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  • 1.
    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, 2646-2656 s.Artikkel 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.

  • 2.
    Bala, Sidona-Valentina
    et al.
    Department of Health Sciences, Lund University.
    Samuelson, Karin
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Svensson, Björn
    Section of Rheumatology at the Institution of Clinical Science, Lund University.
    Fridlund, Bengt
    Department of Health Sciences, Lund University.
    Hesselgard, Karin
    Corpporate office, Skåne Regional Council, Malmö.
    The experience of care at nurse-led rheumatology clinics2012Inngår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 10, nr 4, 202-211 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective To describe how people with rheumatoid arthritis (RA) experience the care provided by Swedish nurse-led rheumatology outpatient clinics. Methods Eighteen adult people with a diagnosis of RA who had had at least three documented contact sessions with a nurse-led clinic were interviewed. The interviews were analysed with qualitative content analysis. Results Care was expressed in three categories: social environment, professional approach and value-adding measures. A social environment including a warm encounter, a familial atmosphere and pleasant premises was desired and contributed to a positive experience of care. The nurses' professional approach was experienced as empathy, knowledge and skill, as well as support. The care was described as person centred and competent, as it was based on the individual's unique experience of his/her disease and needs. The nurses' specialist knowledge of rheumatology and rheumatology care was highly valued. The offered care represented added value for the participants, instilling security, trust, hope and confidence. It was perceived as facilitating daily life and creating positive emotions. The nurse-led clinics were reported to be easily accessible and provided continuity of the care. These features were presented as fundamental guarantees for health care safety. Conclusion The experiences emphasized the need for a holistic approach to care. In this process, the organization of care and the role and skills of the nurse should be focused on the individual's needs and perspectives. The social environment, professional approach and value-adding measures are particularly relevant for optimal care at nurse-led rheumatology outpatient clinics.

  • 3.
    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, 1520-1520 s.Artikkel 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.

  • 4.
    Bladh, Stina
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Nilsson, Maria
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hariz, Gun-Marie
    Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Hobart, Jeremy
    Department of Clinical Neuroscience, Peninsula Medical School, Plymouth, UK.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Psychometric performance of a generic walking scale (Walk-12G) in multiple sclerosis and Parkinson's disease2012Inngår i: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 259, nr 4, 729-738 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Walking difficulties are common in neurological and other disorders, as well as among the elderly. There is a need for reliable and valid instruments for measuring walking difficulties in everyday life since existing gait tests are clinician rated and focus on situation specific capacity. The Walk-12G was adapted from the 12-item multiple sclerosis walking scale as a generic patient-reported rating scale for walking difficulties in everyday life. The aim of this study is to examine the psychometric properties of the Walk-12G in people with multiple sclerosis (MS) and Parkinson’s disease (PD). The Walk-12G was translated into Swedish and evaluated qualitatively among 25 people with and without various neurological and other conditions. Postal survey (MS, n = 199; PD, n = 189) and clinical (PD, n = 36) data were used to test its psychometric properties. Respondents considered the Walk-12G relevant and easy to use. Mean completion time was 3.5 min. Data completeness was good (<5% missing item responses) and tests of scaling assumptions supported summing item scores to a total score (corrected item-total correlations >0.6). Coefficient alpha and test–retest reliabilities were >0.9, and standard errors of measurement were 2.3–2.8. Construct validity was supported by correlations in accordance with a priori expectations. Results are similar to those with previous Walk-12G versions, indicating that scale adaptation was successful. Data suggest that the Walk-12G meets rating scale criteria for clinical trials, making it a valuable complement to available gait tests. Further studies involving other samples and application of modern psychometric methods are warranted to examine the scale in more detail.

  • 5.
    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, 530-535 s.Artikkel 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.

  • 6.
    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, 2373-2388 s.Artikkel 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.

  • 7.
    Bolejko, Anetta
    et al.
    Skåne University Hospital Malmö.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Wann-Hansson, Christine
    Malmö University.
    Zackrisson, Sophia
    Skåne University Hospital Malmö.
    Prevalence, long-term development, and predictors of psychosocial consequences of false-positive mammography among women attending population-based screening2015Inngår i: Cancer Epidemiology, Biomarkers and Prevention, ISSN 1055-9965, E-ISSN 1538-7755, Vol. 24, nr 9, 1388-97 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Cancer screening aims to detect cancer at an asymptomatic stage, although side effects from screening also occur. We investigated the prevalence, longitudinal development, and predictors of psychosocial consequences of false-positive breast cancer screening.

    METHODS: Three hundred ninety-nine women with false-positive screening mammography responded to the Consequences of Screening-Breast Cancer (COS-BC) questionnaire immediately after a negative diagnosis (free from breast cancer) following recall examination(s) (baseline), and 6 and 12 months later. Age-matched controls (n = 499) with a negative mammogram responded to the COS-BC at the same occasions. Five COS-BC scales (Sense of dejection, Anxiety, Behavioral, Sleep, and Existential values) were used as outcome measures.

    RESULTS: Women with false-positive mammography had consistently higher prevalence of all five consequences compared with controls (P < 0.001). The prevalences decreased between baseline and 6 months (P < 0.001) but were stable between 6 and 12 months (P ≥ 0.136). Early recall profoundly predicted long-term consequences for all five outcomes (OR, 3.05-10.31), along with dissatisfaction with information at recall (OR, 2.28-2.56), being foreign-born (OR, 2.35-3.71), and lack of social support (OR, 1.13-1.25).

    CONCLUSION: This 1-year longitudinal study shows that women experience psychosocial consequences of false-positive screening mammography. Early recall should be performed cautiously, and provision of information as well as social support may reduce psychosocial consequences.

    IMPACT: Although delivery of population-based screening reduces breast cancer mortality, it also raises the issue of its impact on the psychosocial well-being of healthy women. Our findings identify predictors that can be targeted in future efforts to reduce the side effects of mammographic screening.

  • 8.
    Bolejko, Anetta
    et al.
    Department of Health Sciences, Lund University.
    Wann-Hansson, Christine
    Department of Caring Sciences, Malmö University.
    Zackrisson, Sophia
    Diagnostic Centre of Imaging and Functional Medicine, Skåne University Hospital, Malmö.
    Brodersen, John
    Research Unit and Section for General Practice, Institute of Public Health, University of Copenhagen.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Adaptation to Swedish and further development of the ‘Consequences of Screening – Breast Cancer’ questionnaire: a multimethod study2013Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, nr 2, 475-486 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Rationale:  Experiencing a false-positive screening mammography can cause considerable psychosocial distress. The Consequences of Screening – Breast Cancer questionnaire (COS-BC parts 1 and 2), recently developed in Denmark, is the only condition-specific questionnaire for measuring short- and long-term psychosocial consequences of false-positive mammographic screening. Additional studies are needed to further test the COS-BC before use across cultures. Furthermore, studies have suggested that the consequences of false-positive screening results are partly common across cancer screening settings, although this hypothesis remains largely untested.

    Objectives:  This study (i) assesses content validity of a Swedish version of the COS-BC, (ii) tests whether items expressing long-term consequences of false-positive lung cancer screening results are relevant in a breast cancer screening context and (iii) explores the usefulness of taking results from Rasch analyses of the source version as an aid in questionnaire translation and adaptation.

    Methods:  Following dual-panel translation, content validity was assessed through qualitative interviews with representatives of the target population and the content validity index (CVI). Item locations and Rasch model fit of the source questionnaires were considered in the translation and assessment process.

    Results:  The COS-BC items were generally found relevant and provided coverage of the target construct. Content validity was supported also for nine of 10 lung cancer screening items. Scale CVI values were ≥0.81. Previous Rasch data were useful in facilitating translation and assessing item content validity. The resulting Swedish version of the COS-BC parts 1 and 2 consists of 34 and 23 items, respectively.

    Conclusion:  This study illustrates the value of methodological triangulation and use of data from previous Rasch analyses in questionnaire translation and adaptation. We found support for the hypothesis that consequences of false-positive screening are common across cancer screening settings. Psychometric properties of the Swedish COS-BC remain to be established.

  • 9.
    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, 2053-2062 s.Artikkel 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.

  • 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, 533-543 s.Artikkel 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.
    Eklund, Mona
    et al.
    Department of Health Sciences, Lund University.
    Erlandsson, Lena-Karin
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Psychometric properties of a Swedish version of the Pearlin Mastery Scale in people with mental illness and healthy people2012Inngår i: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 66, nr 6, 380-388 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Mastery refers to the degree to which people perceive that they can control factors that influence their life situation, and has been found important for people's quality of life and well-being. It is thus essential to be able to measure mastery in a valid and reliable way. Aim: This study aimed at using the Rasch measurement model to investigate the psychometric properties of a Swedish version of the Pearlin Mastery Scale (Mastery-S). Methods: A sample of 300 healthy individuals and 278 persons with mental illness responded to the Mastery-S. Item responses were Rasch analysed regarding model fit, response category functioning, differential item functioning (DIF) and targeting, using the partial credit model. Results: The Mastery-S items represented a logical continuum of the measured construct but one item displayed misfit. Reliability (Person Separation Index) was 0.7. The response categories did not work as expected in three items, which could be corrected for by collapsing categories. Three items displayed DIF between the two subsamples, which caused a bias when comparing mastery levels between subsamples, suggesting the Mastery-S is not truly generic. Conclusions: The Mastery-S may be used to obtain valid and reliable data, but some precautions should be made. If used to compare groups, new analyses of DIF should first be made. Users of the scale should also consider exempting item 6 from the scale and analyse it as a separate item. Finally, rewording of response categories should be considered in order to make them more distinct and thereby improve score reliability.

  • 12.
    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, 253-259 s.Artikkel 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.

  • 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). 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.

  • 14.
    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)
  • 15.
    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, 40-42 s.Artikkel 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.

  • 16.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Effect of recall period on item responses to activity limitation items in multiple sclerosis2012Konferansepaper (Fagfellevurdert)
  • 17.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Testing for unidimensionality using the principal component analysis (PCA)/t test protocol in Rasch analysis: a cautionary note2013Inngår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, nr 1 Suppl., 63-64 s.Artikkel i tidsskrift (Fagfellevurdert)
  • 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 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, 456-465 s.Artikkel 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.

  • 19.
    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, 1487-1489 s.Artikkel, forskningsoversikt (Annet vitenskapelig)
  • 20.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Towards end-user centered outcome measurement: an example from Parkinson’s disease2014Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Clinical trial rating scale based outcome measures have been criticized of lacking relevance and meaning to end-users, particularly patients. This is concerning since inferences regarding the usefulness of therapies are based on rating scale derived numbers. In order to be meaningful and in accord with their purpose in clinical trials, rating scale based outcome measures should not only be rigorous measures of the variables they intend to quantify, but they also need to represent variables that are important to end-users such as patients and health care professionals. This requires an understanding of what to measure, and state-of-the-art psychometric methods to ensure that rating scale derived data represent meaningful quantitative measures. However, relatively little is known about what variables that people with, e.g. Parkinson’s disease (PD) prioritize for outcome measurement and how this compares to the views of health care professionals. These issues will be discussed and illustrated in view of recent mixed-methods (Group Concept Mapping) studies in PD. Results illustrate similarities in patients’ and health care professionals’ views in that both considered quality of life as the most important outcome variable and both ranked walking/mobility and sleeping problems among the top five outcome variables. This may serve as guidance in designing future clinical trials. However, data also illustrate important differences in conceptual perspectives. Considerations such as those revealed in these studies should be taken into account in order to render clinical trial outcomes more meaningful and interpretable from an end-user perspective.

  • 21.
    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 Sjuksköterskeutbildningarna.
    Alvariza, Anette
    Ersta Sköndal University College.
    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.
    Kristofer, Årestedt
    Linnaeus University.
    Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit Burden Interview2017Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, nr 2, 272-278 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Context: Previous studies have supported the psychometric properties of the 22-item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson´s disease (PD). However, its short-forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.

    Objectives: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.

    Methods: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age, 69.6 years) of a local Swedish PD society branch were analysed according to classical test theory methods based on polychoric/polyserial correlations.

    Results: Missing item responses were ≤5%. Corrected item-total correlations were ≥0.42 and floor-/ceiling effects were <20%, besides for the briefest (4- and 1-item) short-forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha, 0.89-0.95).  External construct validity was in general accordance with a priori expectations. Short-forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (AUC, 0.91-0.98) relative to the full ZBI-22.

    Conclusion: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.

  • 22.
    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. 

  • 23.
    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 Sjuksköterskeutbildningarna.
    Edfors, Ellinor
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Hedin, Gita
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Oral hälsa och folkhälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    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.
    Sjödahl Hammarlund, Catharina
    Lund University.
    Group concept mapping for evaluation and development in nursing education2016Inngår i: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 20, 147-153 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The value of course evaluations has been debated since they frequently fail to capture the complexity of education and learning. Group Concept Mapping (GCM), a participant-centred mixed-method was explored as a tool for evaluation and development in nursing education and to better understand students' learning experiences, using data from a GCM-based evaluation of a research training assignment integrating clinical practice and research data collection within a Swedish university nursing program. Student nurses (n = 47) participated in a one-day GCM exercise. Focus group brainstorming regarding experiences from the assignment that the students considered important and instructive yielded 98 statements that were individually sorted based on their student-perceived relationships, and rated regarding their importance/instructiveness and need for development. Quantitative analysis of sort data produced a 2-dimensional map representing their conceptual relationships, and eight conceptual areas. Average cluster ratings were plotted relative to each other and provided a decision aid for development and planning by identifying areas (i.e., "Research methodology", "Patients' perspectives", and "Interviewer role") considered highly important/instructive and in high need for development. These experiences illustrate the use and potential of GCM as an interactive participant-centred approach to evaluation, planning and development in nursing and other higher health science educations.

  • 24.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Department of Health Sciences, Lund University.
    Höglund, Arja
    Reimer, Jan
    Eriksson, Brita
    Knutsson, Ingmari
    Widner, Håkan
    Cella, David
    Measuring fatigue in Parkinson's disease: a psychometric study of two brief generic fatigue questionnaires.2006Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 32, nr 5, 420-32 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study evaluated and compared the measurement properties of the 13-item Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and the 9-item Fatigue Severity Scale (FSS) in 118 consecutive Parkinson's disease (PD) patients, using traditional and Rasch measurement methodologies. Both questionnaires exhibited excellent data quality and reliability (coefficient alpha>or=0.9), and acceptable rating scale functionality, and both discriminated between fatigued and nonfatigued patients. Factor and Rasch analyses provided general support for unidimensionality of both FACIT-F and FSS, although they do not appear to measure identical aspects of fatigue. No signs of differential item functioning (DIF) were found for the FACIT-F, whereas potential age DIF was detected for two FSS items. These results support the measurement validity of both questionnaires in PD, although the FACIT-F displayed better measurement precision and modest psychometric advantages over the FSS. Availability of psychometrically sound fatigue measures that are applicable across disorders provides a sound basis for advancing the understanding of this common and distressing complaint.

  • 25.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Knutsson, Ida
    Lund University.
    Single-item assessment of perceived health in neurological disorders: verbal response categories vs visual analog scale2013Inngår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, nr 1 Suppl., 116-117 s.Artikkel i tidsskrift (Fagfellevurdert)
  • 26.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Knutsson, Ida
    Department of Health Sciences, Lund University, Lund, Sweden.
    Samuelson, Karin
    Institutionen för hälsa, vård och samhälle, Medicinska fakulteten, Lunds Universitet.
    Interpretation of response categories in patient-reported rating scales: a test-retest study among people with neurological disorders2012Konferansepaper (Fagfellevurdert)
  • 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.
    Odin, Per
    Department of Neurology, Skåne University Hospital, Lund, Sweden.
    Apomorphine in Parkinson’s disease: 3rd edition2014 (oppl. 3)Bok (Annet vitenskapelig)
  • 28.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Rosblom, Tomas
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    Pålhagen, Sven
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    A Swedish version of the 16-item Parkinson Fatigue Scale (PFS-16)2012Inngår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 125, nr 4, 288-292 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background –  The PFS-16 is a 16-item fatigue scale for Parkinson’s disease (PD) developed in the UK. However, documented translations and psychometric evaluations are sparse.

    Aim –  To translate the PFS-16 into Swedish and conduct initial testing of its psychometric properties.

    Methods –  Following translation, the PFS-16 was administered twice (2 weeks apart) to 30 people with PD (18 men; mean age/PD duration, 60/6.4 years). The PFS-16 uses five response categories (1 = strongly disagree, 5 = strongly agree), and the total score is the mean over item scores (1–5; 5 = more fatigue). An alternative, dichotomised scoring method has also been suggested (total score, 0–16; 16 = more fatigue). Scaling assumptions, floor/ceiling effects, reliability, and correlations with other variables including the generic fatigue scale Functional Assessment of Chronic Illness Therapy – Fatigue scale (FACIT-F) were tested.

    Results –  Scaling assumptions were generally supported for the original scoring [range of mean (SD) item scores, 2.1–3.3 (1–1.4); corrected item-total correlations, ≥0.40], but not for dichotomised scoring [range of mean (SD) item scores, 0.1–0.6 (0.3–0.5); corrected item-total correlations, ≥0.16]. Reliabilities were ≥0.88. Floor effects were absent (original scoring) and >23% (dichotomised scoring); there were no ceiling effects. Correlations with other variables followed expectations (e.g. −0.88 with FACIT-F scores).

    Conclusions –  These observations support the psychometric properties of the Swedish PFS-16, but cautions against dichotomised scoring.

  • 29.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Smith, Stephen
    School of Nursing Sciences, Faculty of Medicine and Health, University of East Anglia.
    A psychometric comparison of two Carer Quality of Life Questionnaires in Huntington's disease: implications for neurodegenerative disorders2013Inngår i: Journal of Huntington's Disease, ISSN 1879-6397, Vol. 2, nr 3, 315-322 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The carer impact of neurodegenerative disorders such as Huntington's disease (HD) is vast. Attempts to measure carer QoL in neurodegenerative disorders include the three-dimensional (Practical aspects of Caregiving, PC; Satisfaction with Life, SL; Feelings about Living with Huntington's disease, FL) Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) and the unidimensional Alzheimer's Carer's Quality of Life Inventory (ACQLI). However, evidence regarding their psychometric properties is sparse. Objectives: To test and compare the psychometric properties of the HDQoL-C, its short-form, and the ACQLI among HD carers. Methods: Data from 61 HD carers (36 women; mean age, 55) were analysed using traditional psychometric methods. Results: Data completeness was good (&gt;95% computable scale scores) but compromised for the PC and total HDQoL-C scales (≤80% computable scale scores). Scaling assumptions were supported for the SL and ACQLI scales (corrected item-total correlations ≥0.38; scaling success rates, 94–100%) but not for the PC, FL or total HDQoL-C scales (corrected item-total correlations ≥0.08; scaling success rates, 39–62%). Floor/ceiling effects were ≤9.8%. Reliabilities were ≥0.84, except for the PC scale (0.62). Conclusions: The HDQoL-C failed to exhibit suitability as a HD carer outcome measure, as two of its three scales did not meet basic psychometric criteria. The third scale (SL) did not outperform the ACQLI. This suggests that carer impact is not disease specific across neurodegenerative disorders.

  • 30.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Smith, Steve
    School of Nursing Sciences, Faculty of Medicine and Health, University of East Anglia, Norwich.
    Why psychometrics is important - a response to: Aubeeluck, Buchanan & Stupple (2013) Journal of Huntington's Disease 2(4) 453–4542013Inngår i: Journal of Huntington's Disease, ISSN 1879-6397, Vol. 2, nr 4, 455-457 s.Artikkel i tidsskrift (Annet vitenskapelig)
  • 31.
    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.

  • 32.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Westergren, Albert
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Measurement properties of the SF-12 Health Survey in Parkinson's disease2011Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 1, nr 2, 185-196 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The 12-item Short-Form Health Survey (SF-12) is an abbreviated version of the SF-36, one of the most widely used patient-reported health outcome rating scales. Similar to the SF-36, it yields summary scores of physical and mental health (PCS and MCS, respectively). However, SF-36 derived PCS and MCS scores have not been found valid in neurological disorders such as Parkinson's disease (PD). Here we used modern psychometric methodology (Rasch analysis) to test the SF-12 in PD, and explored the appropriateness of a total SF-12 score representing overall health. SF-12 data from 150 non-demented people with PD (56% men; mean age/PD-duration, 70/5 years) were analyzed regarding Rasch model fit for the PCS, MCS, as well as for the full SF-12. Data showed some signs of misfit to the Rasch model for all three scales (overall item-trait interaction, P ≥ 0.003; reliability, ≥ 0.85). For example, all scales exhibited signs of dependency between item responses, and the PCS measured with relatively low precision. Model fit (but not measurement precision) was improved following deletion of one PCS and one MCS item (overall item-trait interaction, P ≥ 0.387; reliability, ≥ 0.82). These observations suggest that the SF-12 can be used as a coarse health survey tool in PD and that a total SF-12 may be useful as a measure of overall health. However, its appropriateness as an outcome measure can be questioned and it is somewhat unclear exactly what the derived scores represent. As such, the SF-12 should probably be considered an assessment tool (or index) rather than a measurement instrument.

  • 33.
    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.

  • 34.
    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, 416-431 s.Artikkel 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).

  • 35.
    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, 2571-2577 s.Artikkel 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.

  • 36.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    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.
    Årestedt, Kristofer
    Linnaeus University, Linköping University.
    Beware of the origin of numbers: Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations2017Inngår i: Research in Nursing & Health, ISSN 0160-6891, E-ISSN 1098-240X, Vol. 40, nr 4, 378-386 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The 12-item Short Form Health Survey (SF-12) is a generic health rating scale developed to reproduce the Physical and Mental Component Summary scores (PCS and MCS, respectively) of a longer survey, the SF-36. The standard PCS/MCS scoring algorithm has been criticized because its expected dimensionality often lacks empirical support, scoring is based on the assumption that physical and mental health are uncorrelated, and because scores on physical health items influence MCS scores, and vice versa. In this paper, we review the standard PCS/MCS scoring algorithm for the SF-12 and consider alternative scoring procedures: the RAND-12 Health Status Inventory (HSI) and raw sum scores. We corroborate that the SF-12 reproduces SF-36 scores but also inherits its problems. In simulations, good physical health scores reduce mental health scores, and vice versa. This may explain results of clinical studies in which, for example, poor physical health scores result in good MCS scores despite compromised mental health. When applied to empirical data from people with Parkinson's disease (PD) and stroke, standard SF-12 scores suggest a weak correlation between physical and mental health (rs .16), whereas RAND-12 HSI and raw sum scores show a much stronger correlation (rs .67-.68). Furthermore, standard PCS scores yield a different statistical conclusion regarding the association between physical health and age than do RAND-12 HSI and raw sum scores. We recommend that the standard SF-12 scoring algorithm be abandoned in favor of alternatives that provide more valid representations of physical and mental health, of which raw sum scores appear the simplest.

  • 37.
    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, 533-541 s.Artikkel 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.

  • 38.
    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, 485-485 s.Artikkel i tidsskrift (Annet vitenskapelig)
  • 39.
    Höglund, A.
    et al.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Broman, J.-E.
    Department of Neuroscience, Psychiatry, Uppsala University.
    Pålhagen, S.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Fredrikson, S.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Is excessive daytime sleepiness a separate manifestation in Parkinson's disease?2015Inngår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 132, nr 2, 97-104 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Excessive daytime sleepiness (EDS) is common in Parkinson's disease (PD), but its role and relation to other PD features is less well understood.

    OBJECTIVE: To investigate potential predictors of EDS in PD and to explore how EDS relates to other motor and non-motor PD features.

    METHODS: 118 consecutive persons with PD (54% men; mean age, 64) were assessed regarding EDS using the Epworth Sleepiness Scale (ESS) and a range of motor and non-motor symptoms. Variables significantly associated with ESS scores in bivariate analyses were used in multiple regression analyses with ESS scores as the dependent variable. Principal component analysis (PCA) was conducted to explore the interrelationships between ESS scores and other motor and non-motor PD aspects.

    RESULTS: Among 114 persons with complete ESS data, significant independent associations were found between ESS scores and axial/postural/gait impairment, depressive symptoms, and pain (R(2) , 0.199). ESS scores did not load significantly together with any other PD features in the PCA.

    CONCLUSIONS: Only a limited proportion of the variation in EDS could be accounted for by other symptoms, and EDS did not cluster together with any other PD features in PCAs. This suggests that EDS is a separate manifestation differing from, for example, poor sleep quality and fatigue.

  • 40.
    Höglund, Arja
    et al.
    Karolinska Institutet.
    Broman, JanErik
    Uppsala University.
    Pålhagen, Sven
    Karolinska Institutet.
    Fredrikson, Sten
    Karolinska Institutet.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Excessive Daytime Sleepiness in Parkinson’s Disease – relationship to motor and non-motor symptoms2014Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Objective: To investigate potential predictors of Excessive daytime sleepiness (EDS) in Parkinson’s disease (PD), and explore how EDS relates to other motor and non-motor PD features.

    Background: EDS is common in Parkinson’s disease, but its role and relation to other PD features is less well understood.

    Methods: 118 consecutive persons with PD (54% men; mean age, 64) were assessed regarding EDS using the Epworth Sleepiness Scale (ESS) and a range of motor and non-motor symptoms. Variables significantly associated with ESS scores in bivariate analyses were used in multiple regression analyses with ESS scores as the dependent variable. Principal component analysis (PCA) was conducted to explore the interrelationships between ESS scores and other motor and non-motor PD aspects.

    Results: Among 114 persons with complete ESS data, significant independent associations were found between ESS scores and axial/postural/gait impairment, depressive symptoms, and pain (R2, 0.199). ESS scores did not load significantly together with any other PD features in the PCA.

    Conclusions: Only a limited proportion of the variation in EDS could be accounted for by other symptoms, and EDS did not cluster together with any other PD features in PCAs. This suggests that EDS is a separate manifestation differing from e.g. poor sleep quality and fatigue.

  • 41.
    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, 560-566 s.Artikkel 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.

  • 42.
    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, 477-484 s.Artikkel 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.

  • 43.
    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.

  • 44.
    Knutsson, I.
    et al.
    Department of Health Sciences, Lund University.
    Samuelson, K..
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Stability of rating scale response category interpretations in neurological disorders2013Inngår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 128, nr 4, 265-272 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives Unambiguous use and interpretation of rating scale data assume that response categories are interpreted and work as intended. This study investigated the stability of interpretations of commonly used patient-reported rating scale response categories among people with neurological disorders. Materials and methods Forty-six people with neurological disorders (26 men; mean age, 57; Parkinson's disease, 50%; multiple sclerosis, 41%) indicated their interpretation of 21 response categories (representing frequencies, intensities and levels of agreement) on 100-mm visual analog scales (VAS) at two occasions, ≥2 weeks apart. Data were analyzed using intraclass correlation and weighted Kappa (ICC/Κw; should be >0.4), mean/median differences, percentages agreement (PA), and the standard error of measurement (SEM). Results Most response categories had ICC/Κw values <0.4. The overall average ICC/Κw was 0.279/0.294 (frequencies, 0.224/0.255; intensities, 0.265/0.251; levels of agreement, 0.362/0.376). The mean/median difference between time points across all 21 categories was 0.43/0.5 mm (mean/median absolute difference, 3.36/9 mm). The overall average PA and SEM were 6.5% and 16.1 mm, respectively. Conclusions Stabilities in interpretations of patient-reported rating scale response categories among people with neurological disorders were generally low. Categories expressing levels of agreement showed best results, suggesting that these may be preferable when appropriate with respect to the scale and its items. Future studies should consider response category interpretations in relation to various contexts. These observations suggest caution when interpreting raw rating scale data and argue for the use of modern rating scale methodologies such as the Rasch measurement model.

  • 45.
    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, 19- s.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.

  • 46. Lindholm, Beata
    et al.
    Hagell, Peter
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I.
    Hansson, Oskar
    Nilsson, Maria H.
    Prediction of Falls and/or Near Falls in People with Mild Parkinson's Disease2015Inngår i: PloS one, ISSN 1932-6203, Vol. 10, nr 1, e0117018- s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: To determine factors associated with future falls and/or near falls in people with mild PD.

    METHODS: The study included 141 participants with PD. Mean (SD) age and PD-duration were 68 (9.7) and 4 years (3.9), respectively. Their median (q1-q3) UPDRS III score was 13 (8-18). Those >80 years of age, requiring support in standing or unable to understand instructions were excluded. Self-administered questionnaires targeted freezing of gait, turning hesitations, walking difficulties in daily life, fatigue, fear of falling, independence in activities of daily living, dyskinesia, demographics, falls/near falls history, balance problems while dual tasking and pain. Clinical assessments addressed functional balance performance, retropulsion, comfortable gait speed, motor symptoms and cognition. All falls and near falls were subsequently registered in a diary during a six-month period. Risk factors for prospective falls and/or near falls were determined using logistic regression.

    RESULTS: Sixty-three participants (45%) experienced ≥1 fall and/or near fall. Three factors were independent predictors of falls and/or near falls: fear of falling (OR = 1.032, p<0.001) history of near falls (OR = 3.475, p = 0.009) and retropulsion (OR = 2.813, p = 0.035). The strongest contributing factor was fear of falling, followed by a history of near falls and retropulsion.

    CONCLUSIONS: Fear of falling seems to be an important issue to address already in mild PD as well as asking about prior near falls.

  • 47.
    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.
    Duzynski, Wojciech
    Skåne University Hospital, Malmö.
    Nilsson, Maria
    Lund University, Lund.
    Future falls and/or near falls in people with Parkinson's disease: sensitivity and specificity of two retropulsion tests2013Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Objective: To investigate the sensitivity and specificity of two retropulsion tests for identifying individuals with Parkinson’s disease that will fall and/or experiencing near falls.

    Background: People with PD have an increased risk for falls and experiencing near falls. They are particularly unstable backwards, and different retropulsion tests exist. Item 30 of the Unified Parkinson’s Disease Rating Scale (UPDRS) is most common, involving an expected shoulder pull. Others advocate using an unexpected shoulder pull, e.g. the Nutt Retropulsion test (NRT).

    Methods: The study included 104 people with PD (mean age and PD-duration, 68 and 4.7 years, respectively) visiting a neurological clinic during 2006–2011. Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. UPDRS and NRT assessments were conducted in the “on” condition. Participants then registered all falls and near falls by using a diary for six months. Based on this, participants were defined as “stable” (no falls/near falls) or “unstable” (1 fall / near fall). Sensitivity, specificity, positive and negative predictive values were calculated.

    Results: Mean (SD) score for UPDRS III was 14.5 (8.1). Fiftyfive (53%) participants were classified as “stable” and 49 (47%) as “unstable”. Both the NRT and item 30 (UPDRS) scores differed significantly (p = 0.003) between the groups. Mean NRT and item 30 scores were 0.18 (0.51) and 0.33 (0.61) for the “stable” group versus 0.63 (0.88) and 0.71 (0.74) for the “unstable” group. Sensitivity/specificity were 37%/87% (NRT), and 55%/75% (UPDRS item 30). Positive/negative predictive values were 72%/61% (NRT) and 66%/65% (UPDRS item 30).

    Conclusions: In this mildly affected sample, both NRT and item 30 had low sensitivity in detecting prospective falls and/or near falls over six months. Our findings speak against using either of these tests alone for this purpose and support previous recommendations of using multiple tests when targeting balance problems in people with PD.

  • 48.
    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.

  • 49.
    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.
    Nilsson, Maria
    Lund University.
    Prediction of instability in people with Parkinson's disease - clinical balance and gait tests2013Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Objective: To explore whether clinical balance and gait tests can predict instability (falls and/or near falls) in people with Parkinson’s disease (PD).

    Background: Current PD-studies suggest that multiple balance tests should be used in order to predict falls. However, few studies have included near falls when investigating falls prospectively as recommended.

    Methods: The study included 74 people with PD (mean age and PD-duration, 69 and 4.9 years, respectively) visiting a neurological clinic during 2006–2010. Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. Assessments included: the Berg Balance Scale (BBS, 0–56 points), Nutt Retropulsion test (NRT, dichotomized; 0 = "normal”, 1 = “abnormal”), tandem gait test (TG, dichotomized; 0 = “normal”, 1 = “abnormal”), 10-meter walk test (fast speed, m/s), and Timed Up & Go test (TUG, s). All assessments were conducted in the “on” condition. Participants then registered all falls and near falls by using a diary for six months.

    Results: Mean score for UPDRS III was 14 (SD 7.5). Thirty-six participants (49%) experienced 1 fall and/or near fall (“unstable” group), whereas 38 (51%) had no incidents at all (“stable” group). Simple logistic regression analyses (controlling for age and gender) showed that (P0.05 in all instances) the NRT was the strongest predictor (OR = 5.70) followed by TG (OR = 3.45). Better BBS-scores (OR = 0.88) and gait speed (OR = 0.26) were associated with a decreased risk of instability. The longer time to perform TUG, the higher risk of being unstable (OR = 1.14). When considering all five variables (i.e. tests) simultaneously only BBS was found significant (OR = 0.91, P 5 0.04).

    Conclusions: Clinical balance and gait tests can predict a future instability in people with PD. Further studies using larger samples are needed for firmer conclusions and to establish sensitivity/specificity and cut-off values for these tests.

  • 50.
    Lindholm, Beata
    et al.
    Lund University.
    Nilsson, Maria
    Lund University.
    Hansson, Oskar
    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 Sjuksköterskeutbildningarna.
    External validation of a 3-step falls prediction model in mild Parkinson’s disease2016Inngår i: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 263, nr 12, 2462-2469 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The 3-Step Falls Prediction Model (3-step model) that include history of falls, history of freezing of gait and comfortable gait speed <1.1m/s was suggested as a clinical fall prediction tool in Parkinson’s disease (PD). We aimed to externally validate this model as well as to explore the value of additional predictors in 138 individuals with relatively mild PD. We found the discriminative ability of the 3–step model in identifying fallers to be comparable to previously studies (area under curve (AUC), 0.74; 95%CI, 0.65-0.84) and to be better than that of single predictors (AUC, 0.61-0.69). Extended analyses generated a new model for prediction of falls and near falls (AUC, 0.82; 95%CI, 0.75-0.89) including history of near falls, retropulsion according to the Nutt Retropulsion Test (NRT) and tandem gait (TG). This study confirms the value of the 3-step model as a clinical falls prediction tool in relatively mild PD and illustrates that it outperforms the use of single predictors. However, to improve future outcomes, further studies are needed to firmly establish a scoring system and risk categories based on this model. The influence of methodological aspects of data collection also needs to be scrutinized. A new model for prediction of falls and near falls, including history of near falls, TG and retropulsion (NRT) may be considered as an alternative to the 3-step model, but needs to be tested in additional samples before being recommended. Taken together, our observations provide important additions to the evidence base for clinical fall prediction in PD. 

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