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  • 1.
    Bala, Sidona-Valentina
    et al.
    Lund University.
    Forslind, Kristina
    Lund University.
    Fridlund, Bengt
    Jönköping University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Measuring person-centred care in nurse-led outpatient rheumatology clinics2018Inngår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, nr 2, s. 296-304Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Measurement of person-centred care (PCC) outcomes is underdeveloped owing to the complexity of the concept and lack of conceptual clarity. A framework conceptualizing outpatient PCC in rheumatology nurse-led clinics has therefore been suggested and operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum).

    OBJECTIVE: The aim of the present study was to test the extent to which the PCCoc/rheum represents the underpinning conceptual outpatient PCC framework, and to assess its measurement properties as applied in nurse-led outpatient rheumatology clinics.

    METHODS: The 24-item PCCoc/rheum was administered to 343 persons with rheumatoid arthritis from six nurse-led outpatient rheumatology clinics. Its measurement properties were tested by Rasch measurement theory.

    RESULTS: Ninety-two per cent of individuals (n = 316) answered the PCCoc/rheum. Items successfully operationalized a quantitative continuum from lower to higher degrees of perceived PCC. Model fit was generally good, including lack of differential item functioning (DIF), and the PCCoc/rheum was able to separate individuals with a reliability of 0.88. The four response categories worked as intended, with the exception of one item. Item ordering provided general empirical support of a priori expectations, with the exception of three items that were omitted owing to multidimensionality, dysfunctional response categories and unexpected ordering. The 21-item PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories and no DIF, and its reliability was 0.86.

    CONCLUSION: We found general support for the appropriateness of the PCCoc/rheum as an outcome measure of patient-perceived PCC in nurse-led outpatient rheumatology clinics. While in need of further testing, the 21-item PCCoc/rheum has the potential to evaluate outpatient PCC from a patient perspective.

  • 2.
    Bala, Sidona-Valentina
    et al.
    Lund University.
    Forslind, Kristina
    Lund University.
    Fridlund, Bengt
    Jönköping University.
    Samuelson, Karin
    Lund University.
    Svensson, Björn
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Person-centred care in nurse-led outpatient rheumatology clinics: conceptualization and initial development of a measurement instrument2018Inngår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, nr 2, s. 287-295Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Person-centred care (PCC) is considered a key component of effective illness management and high-quality care. However, the PCC concept is underdeveloped in outpatient care. In rheumatology, PCC is considered an unmet need and its further development and evaluation is of high priority. The aim of the present study was to conceptualize and operationalize PCC, in order to develop an instrument for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics.

    METHODS: A conceptual outpatient PCC framework was developed, based on the experiences of people with rheumatoid arthritis (RA), person-centredness principles and existing PCC frameworks. The resulting framework was operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum), which was tested for acceptability and content validity among 50 individuals with RA attending a nurse-led outpatient clinic.

    RESULTS: The conceptual framework focuses on the meeting between the person with RA and the nurse, and comprises five interrelated domains: social environment, personalization, shared decision-making, empowerment and communication. Operationalization of the domains into a pool of items generated a preliminary PCCoc/rheum version, which was completed in a mean (standard deviation) of 5.3 (2.5) min. Respondents found items easy to understand (77%) and relevant (93%). The Content Validity Index of the PCCoc/rheum was 0.94 (item level range, 0.87-1.0). About 80% of respondents considered some items redundant. Based on these results, the PCCoc/rheum was revised into a 24-item questionnaire.

    CONCLUSIONS: A conceptual outpatient PCC framework and a 24-item questionnaire intended to measure PCC in nurse-led outpatient rheumatology clinics were developed. The extent to which the questionnaire represents a measurement instrument remains to be tested.

  • 3.
    Bala, Sidona-Valentina
    et al.
    Helsingborg Central Hospital.
    Forslind, Kristina
    Helsingborg Central Hospital.
    Samuelson, Karin
    Lund University.
    Svensson, Björn
    Lund University, Helsingborg.
    Fridlund, Bengt
    Jönköping University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Measuring person-centered care in nurse-led outpatient rheumatology clinics2018Inngår i: International Conference on Probabilistic Models for Measurement, 2018Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC.

    AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics.

    DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. 

    RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86.

    SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.

  • 4.
    Bala, Sidona-Valentina
    et al.
    Lund University & Helsingborg Hospital.
    Samuelson, Karin
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Fridlund, Bengt
    Lund University & Jönköping University.
    Forslind, Kristina
    Helsingborg Hospital & Lund University.
    Svensson, Björn
    Lund University.
    Thomé, Bibbi
    Lund University.
    Living with persistent rheumatoid arthritis: a BARFOT study2016Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, nr 17-18, s. 2646-2656Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM AND OBJECTIVE: To describe and understand the meaning of living with persistent rheumatoid arthritis.

    BACKGROUND: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis.

    DESIGN: A descriptive design based on a hermeneutic phenomenological method was used.

    METHODS: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method.

    RESULTS: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services.

    CONCLUSIONS: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way.

    RELEVANCE TO CLINICAL PRACTICE: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.

  • 5.
    Bala, V.
    et al.
    Lund University.
    Fridlund, B.
    Jönköping University.
    Forslind, K.
    Lund University.
    Svensson, B.
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Towards measurement of person-centered care outcomes in outpatient nurse-led clinics2017Inngår i: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 76, s. 1520-1520Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Person-centered care (PCC) is increasingly emphasized as a key component of effective illness management and of developing high quality of care. Despite considerable progress of PCC in many areas of care there is currently a gap and a need for means to assess PCC practice in outpatient care. In rheumatology, PCC is considered an unmet need and further development and evaluation of this approach to care is thus of high priority.

    Objectives To develop an instrument for measuring person-centered care from the perspective of the person with rheumatoid arthritis (RA) in nurse-led outpatient clinics.

    Methods A conceptual framework of PCC in the outpatient context and focusing on the meeting between the person with RA and the nurse and on the patient as an active care partner was undertaken. Based on this framework, qualitative interviews (1,2) and a literature review, a 35-item questionnaire was proposed and qualitatively tested regarding acceptability and content validity among 50 persons with RA attending a nurse-led outpatient clinic. Two versions of the questionnaire were tested: one using four response categories (0 = Totally disagree; 3 = Completely agree), and one using two response categories (0 = Disagree; 1 = Agree). Content validity was estimated by calculating Content Validity Index of the individual items (I-CVI) and of the overall instrument (S-CVI).

    Results Respondents found the items easy to understand (77%) and relevant (93%). Seventy-three percent of the respondents preferred the questionnaire version with four response categories. This version took a mean (SD) of 5.3 (2.5) minutes to complete. I-CVI values ranged from 0.87 to 1.00 and S-CVI was 0.94. About 80% of the respondents considered some items to be redundant. This resulted in a reduced 24-item draft questionnaire that yield a total score between 0–72.

    Conclusions A preliminary 24-item patient-reported PCC questionnaire was developed. Psychometric testing is needed for validation of this tool before implementation.

  • 6.
    Blom, Lisbeth
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Petersson, Pia
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    The SBAR model for communication between health care professionals: a clinical intervention pilot study.2015Inngår i: International Journal of Caring Sciences, ISSN 1791-5201, E-ISSN 1792-037X, Vol. 8, nr 3, s. 530-535Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: SBAR has been suggested as a means to avoid unclear communication between health care professionals and in turn enhance patient safety in the healthcare sector.

     

    Aim: to evaluate hospital-based health care professionals experiences from using the Situation, Background, Assessment and Recommendation (SBAR) communication model.

     

    Methodology: A quantitative, descriptive, comparative pre- and post-intervention questionnaire-based pilot study before and after the implementation of SBAR at surgical hospitals wards. Open comments to questionnaire items were analyzed qualitatively.

     

    Results: The introduction of SBAR increased the experience of having a well-functioning structure for oral communication among health care professionals regarding patients’ conditions. Qualitative findings revealed the categories: Use of SBAR as a structure, Reporting time, Patient safety, and Personal aspects.

     

    Conclusions: SBAR is perceived as effective to get a structure of the content in patient reports, which may facilitate patient safety.

  • 7.
    Bolejko, Anetta
    et al.
    Department of Health Sciences, Lund University.
    Brodersen, John
    Research Unit and Section for General Practice, Institute of Public Health, University of Copenhagen.
    Zackrisson, Sophia
    Department of Medical Imaging and Physiology, Skåne University Hospital Malmö.
    Wann-Hansson, Christine
    Faculty of Health and Society, Malmö University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Psychometric properties of a Swedish version of the Consequences of Screening: Breast Cancer questionnaire2014Inngår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, nr 10, s. 2373-2388Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: To evaluate the psychometric properties of a questionnaire addressing psychosocial consequences of false-positive mammographic screening.

    BACKGROUND: The Consequences of Screening - Breast Cancer and Lung Cancer questionnaires target psychosocial consequences of false-positive cancer screening. The Consequences of Screening - Breast Cancer questionnaire and ten items not considered lung cancer specific from the Lung Cancer questionnaire have been adapted for use in mammographic screening in Sweden, but remain psychometrically untested.

    DESIGN: Instrument development paper with psychometric cross-sectional and test-retest design.

    METHODS: Twelve scales of a Swedish questionnaire version were tested by the Rasch model and traditional psychometric methods. Women with false-positive (Group I, n = 640) and negative (Group II, n = 802) screening mammography responded to the study questionnaire and the Nottingham Health Profile during 2009-2011.

    RESULTS: Iterative analyses resulted in nine scales demonstrating Rasch model fit, but all scales exhibited poor targeting with relatively large floor effects. Corrected item-total correlations exceeded the recommended criterion. Score differences between Groups I and II and correlations with Nottingham Health Profile sections followed an expected pattern. Cronbach's α and test-retest reliability was acceptable for group-level assessments for ten and seven scales, respectively.

    CONCLUSIONS: Five scales (Sense of dejection, Anxiety, Behavioural, Sleep and Existential values) of the Swedish questionnaire version demonstrated the best psychometric properties. Other scales should be used more cautiously. Although filling an important gap, causes of concern were identified across scales. The questionnaire should therefore be considered for group-level assessments rather than for measurement of individual degrees of psychosocial consequences.

  • 8.
    Bolejko, Anetta
    et al.
    Lund University.
    Zackrisson, Sophia
    Skåne University Hospital Malmö.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Wann-Hansson, Christine
    Department of Caring Science, Malmö University.
    A roller coaster of emotions and sense: coping with the perceived psychosocial consequences of a false-positive screening mammography2014Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, nr 13-13, s. 2053-2062Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aims and objectives To explore coping with the perceived psychosocial consequences of a false-positive screening mammography. Background Mammographic screening has been found effective to decrease breast cancer (BC) mortality, yet there are adverse effects. Psychosocial consequences of false-positive mammographic screening have mainly been investigated from a population-based perspective. A call for qualitative studies to further explore these consequences has thus been postulated. To date, qualitative studies have elucidated women's experiences following their recall breast examinations, but their coping with perceived psychosocial consequences of a false-positive screening mammography has not yet been explored. Design An explorative qualitative study. Methods Face-to-face interviews were held with a purposive heterogeneous sample of 13 Swedish-speaking women with a false-positive screening mammography. The transcripts were analysed by the use of an inductive content analysis. Results Coping with the perceived psychosocial consequences of a false-positive screening mammography implied a roller coaster of emotion and sense. Women described how they imagined the worst and were in a state of uncertainty feeling threatened by a fatal disease. Conversely, they felt protected, surrounded by their families and being professionally taken care of, which together with perceived sisterhood and self-empowerment evoked strength and hope. Being aware of family responsibility became a crucial matter. Experiencing false-positive screening raised thoughts of thankfulness and reappraisal of life, although an ounce of BC anxiety remained. Consequently, gained awareness about BC screening and values in life surfaced. Conclusions Experiencing a false-positive screening mammography triggers agonising experiences evoking a variety of coping strategies. Provision of screening raises the issue of responsibility for an impact on psychosocial well-being among healthy women. Relevance to clinical practice Gained knowledge might provide a basis for interventions to prevent psychosocial consequences of false-positive mammographic screening and provide support for women with a potentially compromised ability to overcome such consequences.

  • 9.
    Carina, Hellqvist
    et al.
    Linköping University.
    Dizdar, Nil
    Linköping University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Berterö, Carina
    Linköping University.
    Sund-Levander, Märta
    Linköping University.
    A national Swedish self- management program for people with Parkinson’s disease: patients and relatives view2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 175-176Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Objective: To identify and describe experiences that people with PD and their relatives after participation inthe self-management intervention NPS (National Parkinson School) find valuable for managing daily life.

    Background: A self-management program called NPS was developed as a collaboration of healthcare providers, researchers and patient organizations. NPS is aiming to provide tools and strategies for people with PD and their relatives to increase ability to manage symptoms and consequences of disease and thereby improving conditions for a good life. Self-monitoring and self-management are central concepts. NPS focuses on life with PD, which via 7 sessions consisting of education/lectures and group discussions are mediated. Home assignments make participants practice the new skills in their own life.

    Methods: The last session, evaluation of the NPS, was audio recorded in its whole and transcribed verbatim. Data was collected from five separate clinics and analysed both inductively and deductively using Thematic Analysis and by applying the Self-and Family management theory.

    Results: Through inductive analysis three themes; Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life and Promoting life satisfaction, were identified and described. The themes are capturing the meaning, value and experience of being a participant of NPS. Deductive analysis indicated thatthe Self-and Family management theory was useful and valid for this group of patients and generated a modified framework applicable for patients with PD and their families [figure1].

    Conclusions: Living with PD affects patients as well as relatives. Meeting others in the same situation gives support and strengthen their self- image. Having the opportunity sharing experiences and practical advices showed that there was a hopeful future to come. Techniques to accept and manage life with PD included seeking information about disease and treatments, self-monitoring in order to adjust to new situations and improve symptoms of disease and having a positive mind-set. Living an active life, participating in enjoyable social, cultural, and physical activities were important to feel happy and satisfied with life. Participation in NPS covered many areas of importance for the ability of self-management in PD. The framework for self-management in chronic disease was found relevant also for the PD population

  • 10.
    de Roos, Paul
    et al.
    Sverige & USA.
    Bloem, Bastiaan R
    Nederländerna.
    Kelley, Thomas A
    USA.
    Antonini, Angelo
    Italien.
    Dodel, Richard
    Tyskland.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Marras, Connie
    Canada.
    Martinez-Martin, Pablo
    Spanien.
    Mehta, Shyamal H
    USA.
    Odin, Per
    Skåne University Hospital.
    Chaudhuri, Kallol Ray
    England.
    Weintraub, Daniel
    USA.
    Wilson, Bil
    USA.
    Uitti, Ryan J
    USA.
    A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement2017Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 7, nr 3, s. 533-543Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative condition that is expected to double in prevalence due to demographic shifts. Value-based healthcare is a proposed strategy to improve outcomes and decrease costs. To move towards an actual value-based health care system, condition-specific outcomes that are meaningful to patients are essential.

    OBJECTIVE: Propose a global consensus standard set of outcome measures for PD.

    METHODS: Established methods for outcome measure development were applied, as outlined and used previously by the International Consortium for Health Outcomes Measurement (ICHOM). An international group, representing both patients and experts from the fields of neurology, psychiatry, nursing, and existing outcome measurement efforts, was convened. The group participated in six teleconferences over a six-month period, reviewed existing data and practices, and ultimately proposed a standard set of measures by which patients should be tracked, and how often data should be collected.

    RESULTS: The standard set applies to all cases of idiopathic PD, and includes assessments of motor and non-motor symptoms, ability to work, PD-related health status, and hospital admissions. Baseline demographic and clinical variables are included to enable case mix adjustment.

    CONCLUSIONS: The Standard Set is now ready for use and pilot testing in the clinical setting. Ultimately, we believe that using the set of outcomes proposed here will allow clinicians and scientists across the world to document, report, and compare PD-related outcomes in a standardized fashion. Such international benchmarks will improve our understanding of the disease course and allow for identification of 'best practices', ultimately leading to better informed treatment decisions.

  • 11.
    Garmy, Pernilla
    et al.
    Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Lund University.
    Berg, Agneta
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Clausson, Eva
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Jakobsson, Ulf
    Lund University.
    Psychometric analysis of the Salutogenic Health Indicator Scale (SHIS) in adolescents2017Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 45, nr 3, s. 253-259Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: The aim of this study was to test the psychometric properties of the Salutogenic Health Indicator Scale (SHIS) in an adolescent population. Methods: The investigation was performed among Swedish students aged 13–15 years (n = 817; 58% girls). The SHIS was assessed for respondent acceptability, and its psychometric properties were evaluated according to classical test theory (regarding unidimensionality, targeting, reliability, and external construct validity). Results: The adolescents found it easy to complete the questionnaire, which was completed in an average of 4 minutes. Exploratory factor analysis, which is based on polychoric correlations, identified one factor, supporting the instrument’s unidimensionality. Floor/ceiling effects were ⩽ 3.3%. Reliability estimates yielded a Cronbach’s alpha value of 0.93; the test–retest reliability (n = 50; 2-week interval) coefficients were 0.89 for the total SHIS score and 0.52–0.79 for item scores. Spearman correlations with other variables were based on a priori expectations (self-rated general health, 0.595; depressive symptoms, −0.773; anxiety, −0.577; and sleep problems, 0.519). Conclusions: Our observations support both the acceptability and the psychometric properties of the SHIS as a brief, unidimensional assessment tool for salutogenic health in adolescents. Further studies using modern test theory are needed to better understand the measurement properties of the SHIS, including the functioning of its response categories and its comparability between adolescents and adults.

  • 12.
    Garmy, Pernilla
    et al.
    Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Lunds universitet.
    Berg, Agneta
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Clausson, Eva
    Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Jakobsson, Ulf
    Lunds universitet.
    Salutogent frågeformulär för ungdomar2017Konferansepaper (Annet vitenskapelig)
    Abstract [sv]

    Våra observationer stöder både acceptansen och de psykometriska egenskaperna för SHIS som ett kort, en-dimensionellt frågeformulär för att mäta salutogen hälsa hos ungdomar.

  • 13.
    Garmy, Pernilla
    et al.
    Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO).
    Clausson, Eva
    Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Berg, Agneta
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Jakobsson, Ulf
    Lunds universitet.
    Psychometric Analysis of the Salutogenic Health Indicator Scale (SHIS) in Adolescents2017Konferansepaper (Annet vitenskapelig)
  • 14.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Behandlingsmål vid Parkinson: vad är viktigt för patientens livskvalitet?2015Inngår i: Parkinsonjournalen, ISSN 1104-2435, nr 2, s. 40-42Artikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
    Abstract [sv]

    Vilka sjukdomsaspekter är väsentligast ur patienternas perspektiv? Vilka mål ska sättas för behandlingen? Livskvalitet, gångförmåga och rörlighet är några av de faktorer som visat sig viktiga att utvärdera.

  • 15.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Is the activities of daily living (ADL) section of the unified Parkinson’s disease rating scale valid for measuring ADL in Parkinson's disease?2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    Parkinson’s disease (PD) is a progressive neurodegenerative disorder characterized by motor as well as non-motor symptoms. While available symptomatic therapy is effective, PD is associated with increasing disability and limitations in performance of activities of daily living (ADL). Maintaining and improving activity performance is therefore a major goal in available symptomatic therapy. The most commonly used rating scale for quantification of ADL outcomes is the ADL section (part II) of the Unified PD Rating Scale (UPDRS). However, the UPDRS II does not only include activity but also impairment items. The consequences of this does not appear to have been addressed from a measurement perspective. This paper describes results from Rasch Measurement Theory analyses of complete UPDRS II (full scale, Activity and Impairment) data (n=675-687). Results show poor fit of the full UPDRS II with, e.g., disordered response thresholds, significant misfit and DIF (reliability, 0.82). The 6 Activity items showed no disordered thresholds, significant misfit or DIF (reliability, 0.86), whereas Impairment items did (reliability, 0.51). In conclusion, dividing the UPDRS II into two scales improves ADL measurement, but alternative approaches are needed and the UPDRS II cannot be recommended for measuring ADL in PD as it may yield misleading outcomes.

  • 16.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Role of the unified Parkinson’s disease rating scale as a tool for measuring clinical motor outcomes in Parkinson's disease2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    Parkinson’s disease (PD) is a neurodegenerative disorder characterized by motor symptoms such as bradykinesia, rigidity, tremor and postural instability. Available therapy is symptomatic, although several approaches have been investigated as potential disease-modifying therapies. Clinical trial outcomes are typically measured by means of rating scales, of which the Unified PD Rating Scale (UPDRS) is the most commonly used, particularly part III, its motor examination section. Despite its central role, the UPDRS has not been examined regarding its role as a measurement instrument. This paper describes results from an analysis according to Rasch Measurement Theory (RMT) of 804 complete clinical UPDRS III assessments. Results show that the scale exhibits mistargeting, with the vast majority of people being located at the lower half (i.e., less severe symptoms) of its measurement range. Furthermore, evidence suggests multidimensionality as well as redundancy, and problems with the empirical functioning of rating scale categories. It is concluded that the UPDRS represents a clinical assessment tool rather than a measurement instrument, which may contribute to a range of missed opportunities regarding therapeutic developments as well as understanding of the disease itself. Potential remedies include separation into symptom specific scales and reconceptualization in order to expand its range of measurement.

  • 17.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Testing rating scale unidimensionality using the Principal Component Analysis (PCA)/t-test protocol with the Rasch Model: the primacy of theory over statistics2014Inngår i: Open Journal of Statistics, ISSN 2161-718X, E-ISSN 2161-7198, Vol. 4, nr 6, s. 456-465Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Psychometric theory requires unidimensionality (i.e., scale items should represent a common latent variable). One advocated approach to test unidimensionality within the Rasch model is to identify two item sets from a Principal Component Analysis (PCA) of residuals, estimate separate person measures based on the two item sets, compare the two estimates on a person-by-person basis using t-tests and determine the number of cases that differ significantly at the 0.05-level; if ≤5% of tests are significant, or the lower bound of a binomial 95% confidence interval (CI) of the observed proportion overlaps 5%, then it is suggested that strict unidimensionality can be inferred; otherwise the scale is multidimensional. Given its proposed significance and potential implications, this procedure needs detailed scrutiny. This paper explores the impact of sample size and method of estimating the 95% binomial CI upon conclusions according to recommended conventions. Normal approximation, “exact”, Wilson, Agresti-Coull, and Jeffreys binomial CIs were calculated for observed proportions of 0.06, 0.08 and 0.10 and sample sizes from n= 100 to n= 2500. Lower 95%CI boundaries were inspected regarding coverage of the 5% threshold. Results showed that all binomial 95% CIs included as well as excluded 5% as an effect of sample size for all three investigated proportions, except for the Wilson, Agresti-Coull, and JeffreysCIs, which did not include 5% for any sample size with a 10% observed proportion. The normal approximation CI was most sensitive to sample size. These data illustrate that the PCA/t-test protocol should be used and interpreted as any hypothesis testing procedure and is dependent on sample size as well as binomial CI estimation procedure. The PCA/t-test protocol should not be viewed as a “definite” test of unidimensionality and does not replace an integrated quantitative/qualitative interpretation based on an explicit variable definition in view of the perspective, context and purpose of measurement.

  • 18.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Testing unidimensionality using the PCA/t-test protocol with the Rasch model: a cautionary note2015Inngår i: Rasch Measurement Transactions, ISSN 1051-0796, Vol. 28, nr 4, s. 1487-1489Artikkel, forskningsoversikt (Annet vitenskapelig)
  • 19.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Broman, Jan-Erik
    Uppsala University.
    Hellström, Amanda
    Blekinge Institute of Technology.
    Fagerström, Cecilia
    Blekinge Institute of Technology.
    Willman, Ania
    Malmö University.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Measurement properties of the Minimal Insomnia Symptom Scale (MISS) as an insomnia screening tool among adults and the elderly2015Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Background: The Minimal Insomnia Symptom Scale (MISS) has been suggested as a brief 3-item screening tool for detecting insomnia. Each item has an ordered 5-category (0-4) response scale and the instrument yields a total score between 0-12 (higher scores = more insomnia). Available MISS evaluations have been based on classical test theory (CTT) approaches. Different cut-offs for identifying insomnia have been suggested for adults (aged 20-64) and elderly (aged 65+). For adults, a cut-off of ≥6 has been suggested, while a cut-off of ≥7 has been suggested for the elderly, as determined from applications of the Youden index.

    Aim: To test the measurement properties of the MISS using the Rasch measurement model, with special emphasis on Differential Item Functioning (DIF) by age, and to explore implications for the two suggested cut-off scores.

    Design: Cross-sectional MISS data from adult (n=1075) and elderly (n=548) populations were analysed by the unrestricted polytomous Rasch measurement model using the RUMM2030 software program. To avoid an inflated type I error rate, sample size was algebraically adjusted to 500 in the calculation of P-values while leaving all other aspects of data (e.g., locations, fit residuals) unaltered.

    Results: Mean person location was -1.095 (SD, 1.28), i.e. items tend to represent more severe levels of insomnia than that experienced by the sample. However, for the purpose of screening this may be considered acceptable. There were no statistically significant deviations from model expectations, with a non-significant overall item-trait interaction (χ2 = 26.94, P=0.173). Reliability (PSI) was 0.59 suggesting that the MISS can separate approximately two statistically distinct groups of people (1.92 strata). The highest Information Function (IF) was found at -0.2 logits. There were no disordered response category thresholds. There was uniform DIF by age for all three items, which disappeared following adjustment (split by age group) for the most pronounced DIF, suggesting that DIF was artificial for two items. Examination of raw scores-to-location estimates between the two age groups revealed differences at the lower and higher ends of the scale. The raw score cut-off of ≥6 was associated with a smaller logit difference between age groups than the ≥7 cut-off (0.09 vs. 0.23). That is, at a raw score of 6 the two age groups were comparable regarding their logit location estimates. This raw score (representing a logit value of -0.03 for the pooled sample) was also the one closest to the location of the highest IF (i.e., -0.2 logits).

    Summary and implications: This study provides general support for the measurement properties of the MISS. However, caution should be exercised in comparing MISS scores between age groups, but applying a ≥6 raw score cut-off appears to allow for valid comparisons between adults and elderly regarding the presence of insomnia. Nevertheless, additional studies are needed to determine the clinically optimal cut-score for identification of insomnia. 

  • 20.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Sandlund, Birgitta
    Skåne University Hospital.
    Direct dopaminergic responsiveness of activity performance2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 460-460Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    Objective: To assess the direct dopaminergic responsiveness of motor and process aspects of activity performance in people with parkinsonian disorders, and to compare this to the symptomatic motor response. 

    Background: Parkinsonian disorders are associated with limitations in daily activity performance. However, while the dopaminergic responsiveness of motor symptoms is well established, the direct dopaminergic responsiveness of aspects of activity performance appears unaddressed since assessments of activity performance typically are retrospective. This is a limitation since impairment (symptoms and signs) is a separate construct from activity limitations, and the latter is not only related to the former. 

    Methods: Twenty-seven people with parkinsonian disorders (18 men; mean age and disease duration, 68 and 8 years, respectively) underwent a clinical dopaminergic drug response test (median (range) L-dopa dose, 150 (100-300) mg) following 12 hours of dopaminergic drug withdrawal. Participants were tested according to the Unified PD Rating Scale (UPDRS) motor examination and the Assessment of Motor and Process Skills (AMPS) scale in the defined ”off” and best ”on” states. Similar to the UPDRS motor examination, AMPS ratings are based on direct observations of activity performance. Average ”off”, ”on” and change scores were compared, and magnitudes of responsiveness were estimated using Cohen’s dzeffect size (ES). Correlations between outcomes were also computed. 

    Results: Motor symptoms (mean UPDRS motor scores) improved from 36.2 in the defined “off” to 22.5 in the best “on” state, representing an ES of 0.74. Mean AMPS motor scores improved from 1.46 (defined “off”) to 2.34 (best “on”) and mean process scores improved from 1.37 to 1.85, representing ESs of 1.13 (motor) and 0.79 (process). Absolute correlations between UPDRS motor scores and AMPS motor/process scores ranged between 0.40-0.61 for defined “off”, best “on” and change scores.

    Conclusions: The dopaminergic responsiveness was more pronounced for activity performance than for motor symptoms, although motor symptom responsiveness was similar to that of process aspects of activity performance. Correlations suggest that symptomatic motor response is a relatively weak predictor of daily activity performance. These observations argue for the need to specifically address activity performance outcomes in clinical studies.

  • 21.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Höglund, Arja
    Karolinska University Hospital.
    Hellqvist, Carina
    Linköping University Hospital.
    Johansson, Eva-Lena
    Karlstad Central Hospital.
    Löwed, Berit
    Karlstad Central Hospital.
    Sjöström, Ann-Christine
    Sahlgrenska University Hospital.
    Karlberg, Carina
    Sahlgrenska University Hospital.
    Lundgren, Maragreth
    Karolinska University Hospital.
    Dizdar, Nil
    Linköping University Hospital.
    Johansson, Anders
    Karolinska University Hospital.
    Willows, Thomas
    Karolinska University Hospital.
    Rådberg, Johan
    Karlstad Central Hospital.
    Bergquist, Filip
    Sahlgrenska University Hospital.
    Apomorphine formulation influences subcutaneous complications in continuous apomorphine pump therapy for Parkinson’s disease2017Inngår i: Movement Disorders, 2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    Objective: To explore if the occurrence and severity of subcutaneous (sc) nodules is influenced by the pharmaceutical formulation of apomorphine used for sc infusion in advanced Parkinson’s disease (PD).

    Background: Apomorphine infusion is an effective therapy in advanced PD, but a limitation is troublesome sc nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal clinical experience has suggested that shifting from one of these (Apo-Go PumpFill; apoGPF) to another (Apomorphine PharmSwed; apoPS, developed in Sweden) may influence the occurrence and severity of sc nodules.

    Methods: In this multicenter open-label prospective observational study, 15 people with advanced PD (mean PD- duration, 13.4 years; median Hoehn & Yahr, IV) on apoGPF since a mean of 2.1 years and with troublesome sc nodules were switched to apoPS. Ongoing interventions to treat existing nodules (ultrasound, massage, Hirudoid cream) continued, and apomorphine as well as other drugs was managed according to clinical routines. Data were collected between May 2015 and March 2017; at baseline, at the time of switching (about 2 weeks later), and up to 1.7-4.2 (mean, 2.5) months post-switch follow-up. Primary outcomes were total nodule numbers, size (mm diameter for the 5 worst nodules), consistency (scored 0-3 for the 5 worst nodules), and associated skin changes (scored 0-4 for the 5 worst nodules) and pain (scored 0-5). Patients also rated their perceived PD severity and motor complications (UPDRS IV). Patient preferences 5-12 months post-switch (2-9 months after follow-up) were also recorded.

    Results: Apomorphine and L-dopa doses did not change over the observation period (P≥0.400). Baseline nodule numbers (7.4 vs. 4.6; P<0.003), size (92.9 vs. 54.1 mm; P=0.016), consistency (11 vs. 5; P=0.003), skin changes (3 vs. 1.5; P=0.205), and average pain (1 vs. 0; P=0.020) improved 11 weeks post-switch. Patient-reported PD severity (P=0.020) and motor fluctuations improved (P=0.051), whereas dyskinesias tended to increase (P=0.205). At 5-12 months post-switch, 13 patients had decided to remain on apoPS; mainly due to improved nodules.

    Conclusions: These observations suggest that apoPS may have a better safety profile compared to apoGPF in terms of sc nodule occurrence and severity. There is a need for larger, randomized controlled studies for firmer conclusions.

  • 22.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Nilsson, Maria
    Lund University.
    Chaudhuri, Ray
    England.
    Odin, Per
    Lund University.
    The non-motor symptoms questionnaire and non-motor symptoms scale for use in Sweden2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 74-74Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    Objective: To translate the Non-Motor Symptoms Questionnaire (NMSQ) and the Non-Motor Symptoms Scale (NMSS) into Swedish, and test their linguistic validity and user-friendliness.

    Background: Non-motor symptoms (NMS) are common but under recognized among people with Parkinson’sdisease (PwPD). The NMSQ and NMSS were developed to ease NMS detection and assessment. The NMSQ is a patient-reported checklist regarding the presence of 30 NMS. The NMSS is a clinician-administered interview based rating scale regarding the frequency and severity of 30 NMS. Both are widely used, but Swedish versions have been lacking.

    Methods: The English NMSQ and NMSS were translated into Swedish in two stages. First, Swedish translations were produced by a professional translator and 3 bilingual PD-clinicians. Second, translations were reviewed by 3 independent PD-clinicians, resulting in minor revisions. The subsequent Swedish versions were then field-tested by 4 PD-clinicians on 5 PwPD each (n=20; 15 men; mean age and PD duration 67.6 and 9 years; HY stages II-IV). Evaluations included user burden (completion time), content relevance, and easiness to understand and use.

    Results: PwPD completed the NMSQ in a mean (range) of 4.8 (2-8) minutes. NMSQ content was considered relevant by 19 PwPD; 19 found instructions easy to understand and 17 found items easy to understand and respond to. The NMSS was completed in 13 (8-25) minutes. All 4 clinicians considered NMSS contents as relevant and instructions easy to understand; 1 considered items easy to rate. Two clinicians reported NMSS items as easy to understand for PwPD, and 1 clinician reported items as easy to answer for PwPD. Two clinicians considered theNMSS “very much” or “moderately”, and 2 considered it “a little” useful for clinical research. One clinician considered the NMSS “moderately”, and 3 considered it “a little” useful for clinical practice, but none would use it themselves. Translators, reviewers and field-test clinicians highlighted ambiguities with the NMSS not related to the translation.

    Conclusions: The NMSQ and NMSS were translated into Swedish and the linguistic validity of both translations was supported. There was also support for the user-friendliness of the NMSQ, but not for the NMSS. Issues detected with the NMSS do not appear to be specific for the Swedish version. Further evaluations of the NMSS in larger samples are needed.

  • 23.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Odin, Per
    Department of Neurology, Skåne University Hospital, Lund, Sweden.
    Apomorphine in Parkinson’s disease: 3rd edition2014 (oppl. 3)Bok (Annet vitenskapelig)
  • 24.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Rouse, Mathew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a family member with Alzheimer's disease2017Konferansepaper (Annet vitenskapelig)
  • 25.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Rouse, Matthew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a spouse with Alzheimer's disease: validation of the Alzheimer’s patient partners life impact questionnaire (APPLIQue)2018Inngår i: Journal of Applied Measurement, ISSN 1529-7713, Vol. 19, nr 3Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Alzheimer’s disease (AD) is the most common form of dementia, characterized by cognitive, psychiatric and behavioral symptoms and increasing dependency. Family members typically assume increasing caregiving responsibilities, with considerable quality of life (QoL) impact. This article describes the testing of a needs-based QoL questionnaire for AD family caregivers. Initial analyses according to Rasch measurement theory suggested that items applied to spousal rather than non-spousal caregivers. Following removal of non-spousal responders, a 25-item questionnaire was identified that exhibited acceptable model fit, a mean (SD) person location of 0.194 (1.42) logits, residual correlations ≤0.173 and absence of DIF by age, gender or administration. Reliability was 0.85. This new measure, the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), may fill an important gap in assessing the impact of AD on spousal caregivers and outcomes of interventions aimed at caregivers as well as persons with AD.

  • 26.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Smith, Steve
    Storbritannien.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Manual for translation and cultural adaptation of the Minimal Eating Observation and Nutrition Form – Version II (MEONF-II)2015Rapport (Annet vitenskapelig)
    Abstract [en]

    This report describes the procedure for translation and cultural

    adaptation of the Minimal Eating Observation and Nutrition Form –

    Version II (MEONF-II) from Swedish or U.K. English for use in other

    languages and countries, including adaptations from Swedish and

    U.K. English to other Swedish (e.g., Finland) and English speaking

    regions (e.g., United States, Canada, Australia), respectively. The

    prescribed methodology is based on the dual-panel approach for

    patient-reported rating scales, but modified for clinical assessment

    tools used by health care professionals. The approach emphasises the

    importance of achieving conceptual rather than linguistic equivalence,

    as well as ease and immediacy of the translation. The procedure

    comprises three main steps: (1) A panel of 3-7 bilingual health care

    professionals work together to produce a first draft target language

    version; (2) Review the first draft target language version by a second

    panel of 3-7 monolingual nurses and/or final year student nurses

    native in the target language; (3) Clinical field-testing of the new

    target language version by 15-30 hospital ward nurses/final year

    student nurses using the MEONF-II with at least five patients each to

    evaluate its user-friendliness and appropriateness. Following a written

    report including all major discussions and difficulties experienced by

    the panels and during field-testing, there is a need for evidence of the

    equivalence of the translated MEONF-II relative to the original

    version, before it can be recommended for general implementation

    into clinical practice. This final step is not covered in any detail here,

    but only outlined in summary. The procedures described here provide

    an easy to follow step-by-step practically oriented manual to facilitate

    the production of high quality translations and adaptations of the

    MEONF-II into new linguistic and cultural settings. This will ease the

    process for nurses and others who are interested in implementing the

    MEONF-II as a means of improving nutritional care for hospital

    inpatients.

  • 27.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Sample size and statistical conclusions from tests of fit to the Rasch measurement model according to the RUMM2030 program2015Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Sample size is a major contributor to statistical null hypothesis testing, which is the basis for many approaches to testing Rasch model fit. To allow for taking this into account, the RUMM2030 Rasch analysis software has the ability to adjust n in the calculation of its chi-2 based fit statistics. This paper examines the effects of such post-hoc adjustments on the statistical conclusions, and explores the occurrence of type I errors with Rasch model fit statistics implemented in RUMM2030. Data simulations of Rasch model fitting 25-item dichotomous scales with sample sizes ranging from n=50-2500 were generated an analysed regarding fit with and without adjusted sample sizes corresponding to the same n values as those simulated. Results suggest that post-hoc downward sample size adjustment is a useful procedure to avoid type I errors when working with relatively large data sets (n≥500). The value of upward adjustment with small data sets is less clear, particularly regarding the total item-trait chi-2 test, which tends to falsely signal misfit. Under the assumption of Rasch model fit, our observations suggest that a sample size around 250 (up to about 500) provides a good balance for the statistical interpretation of RUMM2030 fit statistics.

  • 28.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sample size and statistical conclusions from tests of fit to the Rasch model according to the Rasch Unidimensional Measurement Model (RUMM) program in health outcome measurement2016Inngår i: Journal of Applied Measurement, ISSN 1529-7713, Vol. 17, nr 4, s. 416-431Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Sample size is a major factor in statistical null hypothesis testing, which is the basis for many approaches to testing Rasch model fit. Few sample size recommendations for testing fit to the Rasch model concern the Rasch Unidimensional Measurement Models (RUMM) software, which features chi-square and ANOVA/F-ratio based fit statistics, including Bonferroni and algebraic sample size adjustments. This paper explores the occurrence of Type I errors with RUMM fit statistics, and the effects of algebraic sample size adjustments. Data with simulated Rasch model fitting 25-item dichotomous scales and sample sizes ranging from N=50 to N=2500 were analysed with and without algebraically adjusted sample sizes. Results suggest the occurrence of Type I errors with N≥500, and that Bonferroni correction as well as downward algebraic sample size adjustment are useful to avoid such errors, whereas upward adjustment of smaller samples falsely signal misfit. Our observations suggest that sample sizes around N=250 to N=500 may provide a good balance for the statistical interpretation of RUMM fit statistics studied here with respect to Type I errors and under the assumption of Rasch model fit within the examined framed of reference (i.e., about 25 item parameters well targeted to the sample).

  • 29.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Westergren, Albert
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Hobart, Jeremy
    England.
    Wictorin, Klas
    Lund University.
    Measuring the impact of drug-induced dyskinesias in Parkinson’s disease: the PDYS-26 revisited2018Inngår i: International Conference on Probabilistic Models for Measurement, 2018Konferansepaper (Annet vitenskapelig)
    Abstract [en]

    BACKGROUND: Drug-induced dyskinesias (DID) are a common long-term complication of dopaminergic drug therapy for Parkinson’s disease (PD). The 26-item PD dyskinesia scale (PDYS-26) is a patient-reported rating scale intended to quantify the everyday impact of DID. However, its measurement properties have not been scrutinized since its development some 10 years ago.

    AIM: To examine the measurement properties of the PDYS-26 using Rasch Measurement Theory (RMT).

    DESIGN: The PDYS-26 was administered to people with PD and varying degrees of DID recruited from six Swedish (n=172) and three British (n=150) outpatient movement disorder clinics. RMT analyses were conducted using the RUMM2030 software.

    RESULTS: RMT model fit was generally good with only three items exhibiting relatively minor misfit. Response categories worked as intended and targeting was acceptable and reliability was 0.96. There was no differential item functioning (DIF) by age, PD duration or time, but three items exhibited DIF by country and one by sex, neither of which appear to notably bias person measurement. Item hierarchy review suggested a variable of dubious clinical/theoretical coherence. Therefore, a recently proposed three-dimensional reduced (21-item) PDYS version was explored. Results were similar to those from the original scale but with improved conceptual coherence, albeit with close to a 2- to 3-fold decrease in measurement precision. 

    SUMMARY AND IMPLICATIONS: The PDYS-26 appears useful for measuring the impact of DID, and yields sufficiently invariant measurement across core patient subgroups. Scale reconceptualization improves the meaning of scores, but at the cost of measurement uncertainty.

  • 30.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Janelidze, Shorena
    Lund University.
    Hansson, Oskar
    Lund University.
    The Swedish SCOPA-SLEEP for assessment of sleep disorders in Parkinson's disease and healthy controls2016Inngår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, nr 10, s. 2571-2577Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE: SCOPA-SLEEP is a rating scale for night-time sleep and daytime sleepiness (DS) proposed for use among people with Parkinson's disease (PD) as well as others. We translated it into Swedish and assessed its psychometric properties in PD and age-matched healthy controls.

    METHODS: Following translation according to the dual-panel approach, the Swedish SCOPA-SLEEP was field-tested regarding comprehensibility, relevance and respondent burden (n = 20). It was then psychometrically tested according to classical test theory (data completeness, scaling assumptions, targeting, reliability and construct validity) using data from 149 people with PD and 53 age-matched healthy controls from the prospective Swedish BioFINDER study.

    RESULTS: SCOPA-SLEEP took a mean of 3.5 min to complete and was considered easy to use and relevant. Missing item responses were <8 %, corrected item-total correlations were ≥0.47 (except for one DS item among controls), factor analyses suggested one dimension per scale, floor/ceiling effects were ≤17 %, reliability was ≥0.85 except for the DS scale among controls (0.65) and construct validity was supported.

    CONCLUSIONS: Observations concur with previous evaluations, thus providing initial support for the Swedish SCOPA-SLEEP among people with PD. Further studies are needed to establish its generic properties and to understand its measurement properties in better detail.

  • 31.
    Hellström, A
    et al.
    Linnaeus University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Broström, A
    Jönköping University & Linköping University.
    Ulander, M
    Linköping University.
    Ņrestedt, K
    Linnaeus University.
    Initial psychometric testing of the sleep condition indicator in a Swedish context2017Inngår i: Sleep Medicine, ISSN 1389-9457, E-ISSN 1878-5506, Vol. 40, Supplement 1, s. 129-130Artikkel i tidsskrift (Fagfellevurdert)
  • 32.
    Henriksson, Anette
    et al.
    Ersta Sköndal University College.
    Hudson, Peter
    Australien.
    Öhlen, Joakim
    Ersta Sköndal University College.
    Thomas, Kristina
    Australien.
    Holm, Maja
    Ersta Sköndal University College.
    Carlander, Ida
    Karolinska Institutet.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Årestedt, Kristofer
    Linnaeus University.
    Use of the preparedness for caregiving scale in palliative care: a Rasch evaluation study2015Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 50, nr 4, s. 533-541Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    CONTEXT: Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care.

    OBJECTIVES: The aim of this study was to evaluate the measurement properties of the original English version as well as a Swedish version of the Preparedness for Caregiving Scale (PCS).

    METHODS: The sample (n=674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model.

    RESULTS: Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex were detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index.

    CONCLUSION: The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions.

  • 33.
    Höglund, A.
    et al.
    Karolinska institutet.
    Broman, J. -E
    Uppsala universitet.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Palhagen, S.
    Karolinska institutet.
    Fredrikson, S.
    Karolinska institutet.
    Excessive daytime sleepiness in Parkinson's disease: a 10-year longitudinal study2017Inngår i: European Journal of Neurology, ISSN 1351-5101, E-ISSN 1468-1331, Vol. 24, s. 485-485Artikkel i tidsskrift (Annet vitenskapelig)
  • 34.
    Jakobsson, Ulf
    et al.
    Department of Health Sciences, Lund University.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Lindskov, Susanne
    Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan. Department of Geriatrics and Neurology, Central Hospital, Kristianstad.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Construct validity of the SF-12 in three different samples2012Inngår i: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 18, nr 3, s. 560-566Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Rationale, aims and objectives  Studies have challenged the validity and underlying measurement model of the physical and mental component summary scores of the 36-item Short-Form Health Survey in, for example the elderly and people with neurological disorders. However, it is unclear to what extent these observations translate to physical and mental component summary scores derived from the 12-item short form (SF-12) of the 36-item Short-Form Health Survey. This study evaluated the construct validity of the SF-12 in elderly people and people with Parkinson's disease (PD) and stroke.

    Methods  SF-12 data from a general elderly (aged 75+) population (n = 4278), people with PD (n = 159) and stroke survivors (n = 89) were analysed regarding data quality, reliability (coefficient alpha) and internal construct validity. The latter was assessed through item-total correlations, exploratory and confirmatory factor analyses.

    Results  Completeness of data was high (93–98.8%) and reliability was acceptable (0.78–0.85). Item-total correlations argued against the suggested items-to-summary scores structure in all three samples. Exploratory factor analyses failed to support a two-dimensional item structure among elderly and stroke survivors, and cross-loadings of items were seen in all three samples. Confirmatory factor analyses showed lack of fit between empirical data and the proposed items-to-summary measures structure in all samples.

    Conclusions  These observations challenge the validity and interpretability of SF-12 scores among the elderly, people with PD and stroke survivors. The standard orthogonally weighted SF-12 scoring algorithm is cautioned against. Instead, when the assumed two-dimensional structure is supported in the data, oblique scoring algorithms appear preferable. Failure to consider basic scoring assumptions may yield misleading results.

  • 35.
    Johansson, Maurits
    et al.
    Lund University.
    Johansson, Per
    Lund University & Gothenburg University.
    Stomrud, Erik
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Hansson, Oskar
    Lund University.
    Psychometric testing of a Swedish version of the Apathy Evaluation Scale2017Inngår i: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 71, nr 6, s. 477-484Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Apathy, a prevalent and clinically relevant symptom in neurodegenerative disease, is often evaluated by the instrument Apathy Evaluation Scale (AES). However, this instrument has not been translated into Swedish, halting clinical and research efforts. Furthermore, previous studies lack analyses of some basic properties, such as the legitimacy of a total score, or have analysed dimensionality by questionable methods.

    AIM: To translate and psychometrically evaluate a Swedish version of the AES.

    METHOD: The AES was translated, and its psychometric properties were tested in the Swedish BioFINDER study, including cognitively well elderly, and subjects with mild cognitive or parkinsonian symptoms. Psychometric analyses were conducted according to classical test theory (CTT) and aimed to resemble those performed in the English original study by Marin et al. in 1991. Dimensionality was additionally analysed on a matrix of polychoric correlations and parallel analyses.

    RESULTS: Data indicate that the Swedish AES performs satisfactorily regarding data completeness, scaling assumptions, targeting, and reliability. Principal component analyses (with parallel analysis) of polychoric correlation matrices identified a single component. Convergent and discriminative validity correlations accorded with a priori expectations.

    CONCLUSIONS: The study provides initial support that this Swedish AES performs similarly to the English original, and exhibits acceptable psychometric properties according to CTT, including supported unidimensionality, and may be adopted for use in clinical and research settings.

  • 36.
    Jonasson, Stina B
    et al.
    Lund University & Skåne University Hospital.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Hariz, Gun-Marie
    Umeå University.
    Ivarsson, Susanne
    Lund University.
    Nilsson, Maria H
    Skåne University Hospital & Lund University.
    Psychometric evaluation of the Parkinson’s disease Activities of Daily Living Scale2017Inngår i: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective: To evaluate a set of psychometric properties (i.e., data completeness, targeting andexternal construct validity) of the Parkinson’s disease Activities of Daily Living Scale (PADLS) in people with Parkinson’s disease (PD). Specific attention was paid to the association between PADLS and PD severity, according to the Hoehn & Yahr (H&Y) staging.

    Methods: The sample included 251 persons with PD (mean age 70 [SD 9] years). The data collection comprised a self-administered postal survey, structured interviews and clinical assessments at home visits.

    Results: Data completeness was 99.6% and the mean PADLS score was 2.1. Floor and ceiling effects were 22% and 2%, respectively. PADLS scores were more strongly associated (rs>0.5) with perceived functional independence, dependence in ADL, walking difficulties and self- rated PD severity than with variables such as PD duration and cognitive function (rs<0.5).PADLS scores differed across H&Y stages (Kruskal-Wallis test, p<0.001). Those in H&Y stages IV-V had more ADL disability than those in stage III (Mann-Whitney U-test, p<0.001), whereas there were no significant differences between the other stages.

    Conclusion: The PADLS revealed excellent data completeness, acceptable targeting and external construct validity. It seems to be well suited as a rough estimate of ADL disability inpeople with PD.

  • 37.
    Lindholm, Beata
    et al.
    Skåne University Hospital, Malmö.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Hansson, Oskar
    Lund University.
    Nilsson, Maria H.
    Lund University.
    Factors associated with fear of falling in people with Parkinson’s disease2014Inngår i: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 14, s. 19-Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND:

    This study aimed to comprehensibly investigate potential contributing factors to fear of falling (FOF) among people with idiopathic Parkinson's disease (PD).

    METHODS:

    The study included 104 people with PD. Mean (SD) age and PD-duration were 68 (9.4) and 5 (4.2) years, respectively, and the participants' PD-symptoms were relatively mild. FOF (the dependent variable) was investigated with the Swedish version of the Falls Efficacy Scale, i.e. FES(S). The first multiple linear regression model replicated a previous study and independent variables targeted: walking difficulties in daily life; freezing of gait; dyskinesia; fatigue; need of help in daily activities; age; PD-duration; history of falls/near falls and pain. Model II included also the following clinically assessed variables: motor symptoms, cognitive functions, gait speed, dual-task difficulties and functional balance performance as well as reactive postural responses.

    RESULTS:

    Both regression models showed that the strongest contributing factor to FOF was walking difficulties, i.e. explaining 60% and 64% of the variance in FOF-scores, respectively. Other significant independent variables in both models were needing help from others in daily activities and fatigue. Functional balance was the only clinical variable contributing additional significant information to model I, increasing the explained variance from 66% to 73%.

    CONCLUSIONS:

    The results imply that one should primarily target walking difficulties in daily life in order to reduce FOF in people mildly affected by PD. This finding applies even when considering a broad variety of aspects not previously considered in PD-studies targeting FOF. Functional balance performance, dependence in daily activities, and fatigue were also independently associated with FOF, but to a lesser extent. Longitudinal studies are warranted to gain an increased understanding of predictors of FOF in PD and who is at risk of developing a FOF.

  • 38.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Nilsson, Maria
    Lund University.
    Prediction of falls and/or near falls by using tandem gait performance in people with mild Parkinson’s disease2015Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Objective: To investigate whether tandem gait test (TG) can predict future falls and/or near falls in people with Parkinson’s disease (PD).

    Background: People with PD have balance problems and an increased risk for falls. Although TG has been considered a predictor of falls, no PD-study has controlled results for demographic and disease-specific characteristics or included near falls when investigating falls prospectively.

    Methods: The study included 141 participants with PD (mean age and PD-duration, 68 and 4 years, respectively). Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. TG includes taking 10 consecutive tandem steps along a straight line without walking aids and support, with eyes open. Performance was scored as follows: no side steps=0; one or more side steps=1; unable to take 4 consecutive steps=2. If TG was abnormal ("1 side steps) during the first attempt, a second trial was allowed and the best performance was registered. Anti-Parkinsonian medications were recorded from medical records. All assessments were conducted in the “on” condition. Participants thereafter registered all falls and near falls by using a diary for six months.

    Results: Mean score for UPDRS III was 14 (SD 8.0). The median (q1-q3) daily total levodopa equivalent (LDE) dose (mg) was 400 (286-600). Sixty-three participants (45%) experienced ≥1 fall and/or near fall. The median (q1-q3) TG score was 2 (1-2) for those that experienced falls and/or near falls and 0 (0-1) for those without any incidents. Logistic regression (controlling for age, gender, UPDRS III and daily LDE dose) showed that TG score 2 (OR, 5.40; 95% CI, 1.75-16.70; P=0.003) predicted falls and/or near falls. TG score 1 was not significant (OR, 2.24; 95% CI, 0.84-5.98; P=0.109). This model correctly classified 39/63 (62%) of individuals with falls and/or near falls and 64/78 (82%) of individuals without any incidence, and accounted for 32% of the variability between groups.

    Conclusions: The results suggest that TG may be able to predict a future fall and/or near fall in people with mild PD. Further studies using larger samples are needed for firmer conclusions and establishment of additional properties in relation to other assessments.

  • 39.
    Lindholm, Beata
    et al.
    Lund University.
    Nilsson, Maria H
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    The clinical significance of 10-m walk test standardizations in Parkinson's disease2018Inngår i: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 265, nr 8, s. 1829-1835Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: The 10-m walk test (10MWT) is a widely used measure of gait speed in Parkinson's disease (PD). However, it is unclear if different standardizations of its conduct impact test results.

    AIM OF THE STUDY: We examined the clinical significance of two aspects of the standardization of the 10MWT in mild PD: static vs. dynamic start, and a single vs. repeated trials. Implications for fall prediction were also explored.

    METHODS: 151 people with PD (mean age and PD duration, 68 and 4 years, respectively) completed the 10MWT in comfortable gait speed with static and dynamic start (two trials each), and gait speed (m/s) was recorded. Participants then registered all prospective falls for 6 months.

    RESULTS: Absolute mean differences between outcomes from the various test conditions ranged between 0.016 and 0.040 m/s (effect sizes, 0.06-0.14) with high levels of agreement (intra-class correlation coefficients, 0.932-0.987) and small standard errors of measurement (0.032-0.076 m/s). Receiver operating characteristic curves showed similar discriminate abilities for prediction of future falls across conditions (areas under curves, 0.70-0.73). Cut-off points were estimated at 1.1-1.2 m/s.

    CONCLUSIONS: Different 10MWT standardizations yield very similar results, suggesting that there is no practical need for an acceleration distance or repeated trials when conducting this test in mild PD.

  • 40.
    Lindskov, Susanne
    et al.
    Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan. Censtralsjukhuset, Kristianstad.
    Hagell, Peter
    Lunds universitet.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Viktförändring - ett problem vid Parkinsons sjukdom2010Inngår i: I vården, ISSN 2000-4141, Vol. 1, nr 4, s. 24-26Artikkel i tidsskrift (Annet vitenskapelig)
  • 41.
    Lindskov, Susanne
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sjoberg, Klas
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Weight stability in Parkinson's disease2016Inngår i: Nutritional neuroscience, ISSN 1028-415X, E-ISSN 1476-8305, Vol. 19, nr 1, s. 11-20Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: Parkinson's disease (PD) has traditionally been associated with weight loss. However, recent studies have not found any evidence of underweight in PD. Nevertheless, few studies have addressed nutritional status changes over time in relation to other clinical PD features. Here, we explore changes in nutritional status and motor and non-motor PD features (including dopaminergic drug therapy) in PD patients after 1 year. Methods: Motor and non-motor PD features, dopaminergic drug therapy, under-nutrition and malnutrition risk, and anthropometric measures (BMI, handgrip strength, triceps skin-fold, mid-arm circumference, and mid-upper arm muscle circumference) were assessed at baseline and 1 year later among 65 people with PD. Results: Disability, PD motor symptoms, dysautonomia, and dopaminergic drug therapy increased. Underweight was uncommon both at baseline (n= 3) and follow-up (n = 2); malnutrition risk was common but stable (88 and 92%), whereas triceps skin-fold increased (P = 0.030); mid-upper arm muscle circumference decreased (P = 0.002); and the proportion of people with low handgrip strength (P = 0.012) increased. Correlations between nutritional variables and motor and non-motor PD features were absent to modest. Multiple linear regression analysis showed that baseline pupillomotor functioning was associated with decreased weight and BMI, and sleep with increased weight and BMI. In addition, increases in anxiety were associated with decreased weight, BMI, and triceps skin-fold. Discussion: During the PD course, there seems to be redistribution in body composition from muscle to fat. Studies are needed to identify possible explanations for the findings. This implies that malnutrition should be regularly screened to identify those at risk of developing reduced muscle mass and increased morbidity.

  • 42.
    Lindskov, Susanne
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap II. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, K.
    Lunds universitet.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Malnutrition risk in Parkinson's disease2014Inngår i: Journal of Aging Research & Clinical Practice, ISSN 2258-8094, Vol. 3, nr 2, s. 93-99Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Unintentional weight loss and undernutrition have been found common in  Parkinson’s disease but its relation to other disease aspects is unclear.

    Objectives: To explore nutritional status in relation to disease duration in Parkinson’s disease, as well as associations between nutritional status and motor and autonomic features.

    Design: Cross-sectional.

    Setting: South-Swedish outpatient Parkinson-clinic.

    Participants: Home-dwelling people with Parkinson’s disease (n=71), without significant cognitive impairment (mean age, 67.3 years; 56% men; mean disease duration, 6.3 years).

    Measurements: Parkinsonian motor symptoms, mobility, activity level, disability, dyskinesias, dysautonomia, under- and malnutrition risk screening (using MEONF II and MUST for undernutrition and SCREEN II for malnutrition) and anthropometric measures (BMI, handgrip strength, triceps skin-fold, mid-arm circumference and mid-upper arm muscle circumference) were recorded. The sample was divided into those with longer (n=34) and shorter disease duration (n=37) according to the median (5 years).

    Results: Longer disease duration was associated with more, disability, dyskinesias and dysautonomia than shorter duration (P ≤0.04). Mean (SD) body weight and BMI were 80.3 (16.3) kg and 28.1 (4.8) kg/m 2, respectively, and did not differ between duration groups (body weight, 80.9 vs. 79.6 kg; BMI, 28.0 vs. 28.3 kg/m 2; P≥0.738). There were no differences in other anthropometric measures between duration groups (P ≥0.300). BMI identified 4% and 62% as under- and overweight, respectively, and 4% exhibited  undernutrition risk, whereas 87% were at risk for malnutrition. Nutritional and motor/dysautonomic variables showed relatively weak correlations (r s, ≤ 0.33), but people with orthostatic hypotension had lower BMI (26.7 vs 29.2 kg/m 2; P=0.026) and lower handgrip strength (33.2 vs 41.6 kg; P=0.025) than those without orthostatic hypotension.

    Conclusion: Motor and autonomic features showed expected relationships with disease duration. In contrast to these observations, and to most previous reports on nutrition in PD, frequencies of underweight and undernutrition were low. However, malnutrition risk was high, emphasizing the need for regular clinical monitoring of nutritional status. The reasons for the preserved nutritional status have to be explored prospectively.

  • 43.
    Lindskov, Susanne
    et al.
    Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, Klas
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Weight loss in Parkinson´s disease?2013Konferansepaper (Fagfellevurdert)
  • 44.
    Lindskov, Susanne
    et al.
    Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, Klas
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Weight loss in Parkinson´s disease?2013Konferansepaper (Fagfellevurdert)
  • 45.
    Løvereide, Lise
    et al.
    Norge.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna.
    Measuring life satisfaction in Parkinson's disease and healthy controls using the satisfaction with life scale2016Inngår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, nr 10, artikkel-id e0163931Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The 5-item Satisfaction With Life Scale (SWLS) was designed to measure general life satisfaction (LS). Here we examined the psychometric properties of the SWLS in a cohort of persons with Parkinson`s disease (PwPD) and age and gender matched individuals without PD. The SWLS was administered to PwPD and controls from the Norwegian ParkWest study at 5 and 7 years after the time of diagnosis. Data were analysed according to classical test theory (CTT) and Rasch measurement theory. CTT scaling assumptions for computation of a SWLS total score were met (corrected item-total correlations >0.58). The SWLS was reasonably well targeted to the sample and had good reliability (ordinal alpha, 0.92). The scale exhibited good fit to the Rasch model and successfully separated between 5 statistically distinct strata of people (levels of SWLS). The seven response categories did not work as intended and the scale may benefit from reduction to five response categories. There was no clinically significant differential item functioning. Separate analyses in PwPD and controls yielded very similar results to those from the pooled analysis. This study supports the SWLS as a valid instrument for measuring LS in PD and controls. However, Rasch analyses provided new insights into the performance and validity of the SWLS and identified areas for future revisions in order to further improve the scale.

  • 46.
    Løvereide, Lise
    et al.
    Norge.
    Larsen, Jan-Petter
    Norge.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Measuring life satisfaction in people with Parkinson's disease and healthy controls using the satisfaction with life scale2016Inngår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, nr Suppl. 1, s. 150-Artikkel i tidsskrift (Fagfellevurdert)
  • 47.
    Olsson, Yvonne
    et al.
    Lund University.
    Clarén, Lena
    Lund University.
    Alvariza, Anette
    Ersta Sköndal University College.
    Årestedt, Kristofer
    Ersta Sköndal University College.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna.
    Health and social service access among family caregivers of people with Parkinson's disease2016Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 6, nr 3, s. 581-587Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Being a family caregiver for a person with Parkinson's disease (PD) can negatively impact health and wellbeing, but it appears less clear to what extent caregivers' health/social service needs are met.

    OBJECTIVE: We explored the extent to which PD family caregivers experience sufficient access to health/social services, as compared to age-matched controls; and the associations between this and demographic and health-related variables.

    METHODS: A cross-sectional survey of 66 PD family caregivers and 79 age-matched control subjects including the SF-36 health survey, the Nottingham Health Profile Sleep section (NHP-Sleep), and questions regarding contacts with various health/social related services and whether these were perceived as sufficient.

    RESULTS: People reporting insufficient access (n = 29) were more often PD family caregivers than controls (83% vs. 37%), did more often have a disease of their own (79% vs. 46%), and reported poorer health according to the SF-36 and the NHP-Sleep. Being a PD family caregiver (OR, 8.90), reporting more pain (OR, 1.02) and having an own disease (OR, 3.46) were independently associated with insufficient health/social service access.

    CONCLUSIONS: Our results imply that those in greatest need for health/social services (i.e., those with poorer health, an own disease, and who are PD family caregivers) are those whose health/social service needs are least met. Larger studies are needed for firmer conclusions and regarding how unmet health/social service needs impacts caregiver health and wellbeing. Health/social service providers should not only focus on patients but also consider their family members' needs.

  • 48.
    Persson, Carina U
    et al.
    University of Gothenburg.
    Linder, Annika
    Physiotherapy Department NU-Hospital Group, Trollhättan/Uddevalla.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Measurement properties of the Swedish modified version of the Postural Assessment Scale for Stroke Patients (SwePASS) using Rasch analysis2017Inngår i: European Journal of Physical and Rehabilitation Medicine, ISSN 1973-9087, E-ISSN 1973-9095, Vol. 53, nr 6, s. 848-855Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: A previous small-sample (n=150) Rasch analysis of the Swedish modified version of the Postural Assessment Scale for Stroke Patients (SwePASS) suggested problems regarding response categories and redundant items that need confirmation in larger samples with more severe strokes.

    AIM: To evaluate the measurement properties of the SwePASS in patients with acute stroke.

    DESIGN: A multicentre, cross-sectional study.

    SETTING: Two stroke units in Western Sweden.

    POPULATION: The study cohort included 250 consecutive inpatients undergoing rehabilitation after acute stroke.

    METHODS: The SwePASS assessments were performed once within the first four days after admission to the stroke units. The data were analysed according to the Rasch measurement model regarding targeting, model fit, reliability, response category function, local dependence and differential item functioning.

    RESULTS: Postural control of 250 patients (median age, 76.5 years) was assessed with the SwePASS within median of two days after admission to the stroke units. The SwePASS covered a continuum of different levels of postural control, but had suboptimal targeting with insufficient representation of lower and higher levels of postural control. The reliability was high, the item fit statistics were generally acceptable and there was no differential item functioning by sex, age and stroke localization. However, response categories did not function as expected for four of the 12 SwePASS items and five items exhibited local dependency.

    CONCLUSIONS: The SwePASS exhibited several promising measurement properties. To improve the scale, poor targeting, illogical response categories and local dependency should be addressed.

    CLINICAL REHABILITATION IMPACT: The SwePASS provides valuable clinical information regarding postural control in the acute phase after stroke.

  • 49.
    Rosqvist, Kristina
    et al.
    Lund University.
    Horne, Malcolm
    Australien.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Iwarsson, Susanne
    Lund University.
    Nilsson, Maria H
    Lund University.
    Odin, Per
    Lund University.
    Levodopa effect and motor function in late stage Parkinson's disease2018Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 8, nr 1, s. 59-70Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: It is unclear to which degree Levodopa (L-dopa) remains effective also in the late stage of Parkinson's disease (PD) and to which degree motor fluctuations and dyskinesias remain a problem.

    OBJECTIVE: To assess responsiveness of motor symptomatology to L-dopa in a group of patients with late stage PD. Moreover, to investigate the extent to which motor fluctuations and dyskinesias occur.

    METHODS: Thirty PD patients in Hoehn and Yahr (HY) stages IV and V in "on" were included. L-dopa responsiveness was assessed with a standardized L-dopa test in the defined "off" and defined "on" states. Motor function was assessed by the Unified PD Rating Scale (UPDRS) III and timed tests. Motor fluctuations and dyskinesias were assessed by the UPDRS IV. The participants were further monitored for 10 days with a mobile movement-analyses-system, the Parkinson's Kinetigraph (PKG). The median (q1-q3) L-dopa equivalent daily dose (LEDD) was 799 (536-973) mg.

    RESULTS: The UPDRS III score improved with ≥15% in 15 (50%) and with ≥30% in six (20%) participants during the L-dopa test. The median (q1-q3) UPDRS III score in "off" was 46 (37-53) and in "on" 36 (28-46). Twenty-one (70%) of the participants reported either predictable or unpredictable "off" fluctuations (items 36-37). The prevalence of dyskinesias (item 32, duration of dyskinesias ≥1) was 47%. The PKG indicated that dyskinesias primarily were mild and that a majority had a pronounced "off" symptomatology, spending a large proportion of the day either asleep or very inactive.

    CONCLUSIONS: Half of a group of patients with late stage PD had an L-dopa response of ≥15% on the UPDRS III. According to the UPDRS IV, a majority of the patients had motor fluctuations and about half had dyskinesias, although the PKG results suggested that these were not very severe.

  • 50.
    Sjödahl Hammarlund, Catharina
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Andersson, Karolina
    Lund University.
    Andersson, Margareta
    Lund University.
    Nilsson, Maria H.
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    The significance of walking from the perspective of people with Parkinson's disease2014Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 4, nr 4, s. 657-663Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Parkinson's disease (PD) is associated with progressive mobility and walking difficulties. Although these aspects have been found to be central from a patient perspective, the perceived significance of walking is less well understood. Objective: To explore the significance of walking as perceived and experienced by individuals with PD. Methods: Eleven persons with PD (seven men; median age, 71 years; median PD duration, 7 years) participated. Data were collected through semi-structured interviews, which were recorded and transcribed verbatim. Data were qualitatively analysed by systematic text condensation. Results: The ability to walk had a complex and multifaceted impact on the participants, including physical, psychological and emotional aspects as well as on the ability to be active in daily life and to participate in society. The central role of coping strategies was prominent in filtering emotional reactions to physical changes, and when managing the activities and participation in everyday situations. The sense of unpredictability, uncertainty and loss of control were underlying phenomena in all categories. Furthermore, inability to manage walking difficulties had a negative impact on the participants' self-concept. Conclusions: The central meaning of being able to walk appears to be intimately linked to an individual's social identity, emotional well-being and integrity. Consequently, being able to walk independently was a prerequisite to an autonomous life and participation in society. This implies that rehabilitation and other mobility interventions also need to consider individual emotional, psychological, and social implications, and to facilitate appropriate compensatory and coping strategies.

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