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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • 5.
    Bala, 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, s. 202-211Artikkel 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.

  • 6.
    Bala, V.
    et al.
    Lund University.
    Fridlund, B.
    Jönköping University.
    Forslind, K.
    Lund University.
    Svensson, B.
    Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Towards measurement of person-centered care outcomes in outpatient nurse-led clinics2017Inngår i: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 76, s. 1520-1520Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

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

  • 7.
    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, s. 729-738Artikkel 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.

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

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

     

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

     

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

     

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

     

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

  • 9.
    Bolejko, Anetta
    et al.
    Department of Health Sciences, Lund University.
    Brodersen, John
    Research Unit and Section for General Practice, Institute of Public Health, University of Copenhagen.
    Zackrisson, Sophia
    Department of Medical Imaging and Physiology, Skåne University Hospital Malmö.
    Wann-Hansson, Christine
    Faculty of Health and Society, Malmö University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Psychometric properties of a Swedish version of the Consequences of Screening: Breast Cancer questionnaire2014Inngår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, nr 10, s. 2373-2388Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

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

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

  • 10.
    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, s. 1388-97Artikkel 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.

  • 11.
    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, s. 475-486Artikkel 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.

  • 12.
    Bolejko, Anetta
    et al.
    Lund University.
    Zackrisson, Sophia
    Skåne University Hospital Malmö.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Wann-Hansson, Christine
    Department of Caring Science, Malmö University.
    A roller coaster of emotions and sense: coping with the perceived psychosocial consequences of a false-positive screening mammography2014Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, nr 13-13, s. 2053-2062Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 13.
    Carina, Hellqvist
    et al.
    Linköping University.
    Dizdar, Nil
    Linköping University.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Berterö, Carina
    Linköping University.
    Sund-Levander, Märta
    Linköping University.
    A national Swedish self- management program for people with Parkinson’s disease: patients and relatives view2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 175-176Konferansepaper (Fagfellevurdert)
    Abstract [en]

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

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

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

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

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

  • 14.
    de Roos, Paul
    et al.
    Sverige & USA.
    Bloem, Bastiaan R
    Nederländerna.
    Kelley, Thomas A
    USA.
    Antonini, Angelo
    Italien.
    Dodel, Richard
    Tyskland.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Marras, Connie
    Canada.
    Martinez-Martin, Pablo
    Spanien.
    Mehta, Shyamal H
    USA.
    Odin, Per
    Skåne University Hospital.
    Chaudhuri, Kallol Ray
    England.
    Weintraub, Daniel
    USA.
    Wilson, Bil
    USA.
    Uitti, Ryan J
    USA.
    A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement2017Inngår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 7, nr 3, s. 533-543Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

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

  • 15.
    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, s. 380-388Artikkel 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.

  • 16.
    Garmy, Pernilla
    et al.
    Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Lund University.
    Berg, Agneta
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Clausson, Eva
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Jakobsson, Ulf
    Lund University.
    Psychometric analysis of the Salutogenic Health Indicator Scale (SHIS) in adolescents2017Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 45, nr 3, s. 253-259Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 17.
    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.

  • 18.
    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)
  • 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.
    Behandlingsmål vid Parkinson: vad är viktigt för patientens livskvalitet?2015Inngår i: Parkinsonjournalen, ISSN 1104-2435, nr 2, s. 40-42Artikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
    Abstract [sv]

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

  • 20.
    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)
  • 21.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Is the activities of daily living (ADL) section of the unified Parkinson’s disease rating scale valid for measuring ADL in Parkinson's disease?2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

  • 22.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Role of the unified Parkinson’s disease rating scale as a tool for measuring clinical motor outcomes in Parkinson's disease2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

  • 23.
    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., s. 63-64Artikkel i tidsskrift (Fagfellevurdert)
  • 24.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Testing rating scale unidimensionality using the Principal Component Analysis (PCA)/t-test protocol with the Rasch Model: the primacy of theory over statistics2014Inngår i: Open Journal of Statistics, ISSN 2161-718X, E-ISSN 2161-7198, Vol. 4, nr 6, s. 456-465Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 25.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Testing unidimensionality using the PCA/t-test protocol with the Rasch model: a cautionary note2015Inngår i: Rasch Measurement Transactions, ISSN 1051-0796, Vol. 28, nr 4, s. 1487-1489Artikkel, forskningsoversikt (Annet vitenskapelig)
  • 26.
    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.

  • 27.
    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, s. 272-278Artikkel 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.

  • 28.
    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. 

  • 29.
    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, s. 147-153Artikkel 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.

  • 30.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Sandlund, Birgitta
    Skåne University Hospital.
    Direct dopaminergic responsiveness of activity performance2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 460-460Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

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

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

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

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

  • 31.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Höglund, Arja
    Karolinska University Hospital.
    Hellqvist, Carina
    Linköping University Hospital.
    Johansson, Eva-Lena
    Karlstad Central Hospital.
    Löwed, Berit
    Karlstad Central Hospital.
    Sjöström, Ann-Christine
    Sahlgrenska University Hospital.
    Karlberg, Carina
    Sahlgrenska University Hospital.
    Lundgren, Maragreth
    Karolinska University Hospital.
    Dizdar, Nil
    Linköping University Hospital.
    Johansson, Anders
    Karolinska University Hospital.
    Willows, Thomas
    Karolinska University Hospital.
    Rådberg, Johan
    Karlstad Central Hospital.
    Bergquist, Filip
    Sahlgrenska University Hospital.
    Apomorphine formulation influences subcutaneous complications in continuous apomorphine pump therapy for Parkinson’s disease2017Inngår i: Movement Disorders, 2017Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

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

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

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

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

  • 32.
    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, s. 420-32Artikkel 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.

  • 33.
    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., s. 116-117Artikkel i tidsskrift (Fagfellevurdert)
  • 34.
    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)
  • 35.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Nilsson, Maria
    Lund University.
    Chaudhuri, Ray
    England.
    Odin, Per
    Lund University.
    The non-motor symptoms questionnaire and non-motor symptoms scale for use in Sweden2017Inngår i: Movement Disorders, 2017, Vol. 32, s. 74-74Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

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

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

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

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

  • 36.
    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)
  • 37.
    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, s. 288-292Artikkel 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.

  • 38.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Rouse, Mathew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a family member with Alzheimer's disease2017Konferansepaper (Annet vitenskapelig)
  • 39.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Rouse, Matthew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a spouse with Alzheimer's disease: validation of the Alzheimer’s patient partners life impact questionnaire (APPLIQue)2018Inngår i: Journal of Applied Measurement, ISSN 1529-7713, Vol. 19, nr 3Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 40.
    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, s. 315-322Artikkel 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.

  • 41.
    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, s. 455-457Artikkel i tidsskrift (Annet vitenskapelig)
  • 42.
    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.

  • 43.
    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, s. 185-196Artikkel 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.

  • 44.
    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.

  • 45.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Sample size and statistical conclusions from tests of fit to the Rasch model according to the Rasch Unidimensional Measurement Model (RUMM) program in health outcome measurement2016Inngår i: Journal of Applied Measurement, ISSN 1529-7713, Vol. 17, nr 4, s. 416-431Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

  • 46.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Westergren, Albert
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Hobart, Jeremy
    England.
    Wictorin, Klas
    Lund University.
    Measuring the impact of drug-induced dyskinesias in Parkinson’s disease: the PDYS-26 revisited2018Inngår i: International Conference on Probabilistic Models for Measurement, 2018Konferansepaper (Annet vitenskapelig)
    Abstract [en]

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

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

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

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

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

  • 47.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Janelidze, Shorena
    Lund University.
    Hansson, Oskar
    Lund University.
    The Swedish SCOPA-SLEEP for assessment of sleep disorders in Parkinson's disease and healthy controls2016Inngår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, nr 10, s. 2571-2577Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

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

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

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

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

  • 48.
    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, s. 378-386Artikkel 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.

  • 49.
    Heaney, Alice
    et al.
    Galen Research Ltd., Manchester, UK.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    McKenna, Stephen P.
    Galen Research Ltd., Manchester, UK.
    Measuring fatigue in Crohn’s Disease: The importance of a coherent theoretical measurement model2017Konferansepaper (Fagfellevurdert)
  • 50.
    Heaney, Alice
    et al.
    Galen Research Ltd., Manchester, UK.
    McKenna, Stephen P.
    Galen Research Ltd., Manchester, UK.
    Hagell, Peter
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Sengupta, Raj
    The Royal National Hospital for Rheumatic Diseases, Bath, UK.
    Using Rasch analysis to determine the internal validity of the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)2018Inngår i: International Conference on Probabilistic Models for Measurement, 2018Konferansepaper (Fagfellevurdert)
123 1 - 50 of 128
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