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  • 1.
    af Sandeberg, Margareta
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Johansson, Eva M.
    Department of Medicine, Karolinska Institutet.
    Hagell, Peter
    4Department of Health Sciences, Lund University.
    Wettergren, Lena
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer2010Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 8, s. 109-Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer.

    METHODS: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity.

    RESULTS: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden.

    CONCLUSIONS: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.

  • 2.
    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 clinics2018Ingår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, nr 2, s. 296-304Artikel i tidskrift (Refereegranskat)
    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.

  • 3.
    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 instrument2018Ingår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, nr 2, s. 287-295Artikel i tidskrift (Refereegranskat)
    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.

  • 4.
    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 clinics2018Ingår i: International Conference on Probabilistic Models for Measurement, 2018Konferensbidrag (Övrigt vetenskapligt)
    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.

  • 5.
    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 study2016Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, nr 17-18, s. 2646-2656Artikel i tidskrift (Refereegranskat)
    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.

  • 6.
    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 clinics2012Ingår i: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 10, nr 4, s. 202-211Artikel i tidskrift (Refereegranskat)
    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.

  • 7.
    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 clinics2017Ingår i: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 76, s. 1520-1520Artikel i tidskrift (Refereegranskat)
    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.

  • 8.
    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 disease2012Ingår i: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 259, nr 4, s. 729-738Artikel i tidskrift (Refereegranskat)
    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.

  • 9.
    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.2015Ingår i: International Journal of Caring Sciences, ISSN 1791-5201, E-ISSN 1792-037X, Vol. 8, nr 3, s. 530-535Artikel i tidskrift (Refereegranskat)
    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.

  • 10.
    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 questionnaire2014Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, nr 10, s. 2373-2388Artikel i tidskrift (Refereegranskat)
    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.

  • 11.
    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 screening2015Ingår i: Cancer Epidemiology, Biomarkers and Prevention, ISSN 1055-9965, E-ISSN 1538-7755, Vol. 24, nr 9, s. 1388-97Artikel i tidskrift (Refereegranskat)
    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.

  • 12. Bolejko, Anetta
    et al.
    Sarvik, Cathrine
    Hagell, Peter
    Brinck, Anita
    Meeting patient information needs before magnetic resonance imaging: development and evaluation of an information booklet2008Ingår i: Journal of Radiology Nursing, ISSN 1546-0843, Vol. 27, nr 3, s. 96-102Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim was to develop and evaluate a preparatory information booklet for adult patients undergoing magnetic resonance imaging (MRI). The booklet was developed based on pertinent literature and clinical experience. After ethical approval, it was then evaluated qualitatively in 10 people who had received the booklet before their first ever MRI scan. All patients expressed the need for written preparatory information and seven had experienced prescan anxiety and discomfort. Participants found the booklet informative and easily understood, and expressed appreciation related to procedural, behavioral, and sensory information. A few minor misunderstandings were revealed. The impressions by previously MRI-naive participants in this study indicate that the information booklet was successful in providing procedural, behavioral, and sensory information. Minor booklet modifications should provide means to circumvent current misunderstandings. The process used to develop and evaluate the information booklet for this study illustrates an easily implemented strategy to meet patients' needs for preparatory information in clinical practice.

  • 13.
    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 study2013Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, nr 2, s. 475-486Artikel i tidskrift (Refereegranskat)
    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.

  • 14.
    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 mammography2014Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, nr 13-13, s. 2053-2062Artikel i tidskrift (Refereegranskat)
    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.

  • 15.
    Brundin, P
    et al.
    Lund University.
    Pogarell, O
    Tyskland.
    Hagell, Peter
    Lund University.
    Piccini, P
    England.
    Widner, H
    Lund University.
    Schrag, A
    England.
    Kupsch, A
    Tyskland.
    Crabb, L
    England.
    Odin, P
    Lund University.
    Gustavii, B
    Lund University.
    Björklund, A
    Lund University.
    Brooks, D J
    England.
    Marsden, C D
    England.
    Oertel, W H
    Tyskland.
    Quinn, N P
    England.
    Rehncrona, S
    Lund University.
    Lindvall, O
    Lund University.
    Bilateral caudate and putamen grafts of embryonic mesencephalic tissue treated with lazaroids in Parkinson's disease2000Ingår i: Brain, ISSN 0006-8950, E-ISSN 1460-2156, Vol. 123, nr 7, s. 1380-1390Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Five parkinsonian patients were transplanted bilaterally into the putamen and caudate nucleus with human embryonic mesencephalic tissue from between seven and nine donors. To increase graft survival, the lipid peroxidation inhibitor tirilazad mesylate was administered to the tissue before implantation and intravenously to the patients for 3 days thereafter. During the second postoperative year, the mean daily L-dopa dose was reduced by 54% and the UPDRS (Unified Parkinson's Disease Rating Scale) motor score in 'off' phase was reduced by a mean of 40%. At 10-23 months after grafting, PET showed a mean 61% increase of 6-L-[(18)F]fluorodopa uptake in the putamen, and 24% increase in the caudate nucleus, compared with preoperative values. No obvious differences in the pattern of motor recovery were observed between these and other previously studied cases with putamen grafts alone. The amount of mesencephalic tissue implanted in each putamen and caudate nucleus was 42 and 50% lower, respectively, compared with previously transplanted patients from our centre. Despite this reduction in grafted tissue, the magnitudes of symptomatic relief and graft survival were very similar. These findings suggest that tirilazad mesylate may improve survival of grafted dopamine neurons in patients, which is in agreement with observations in experimental animals.

  • 16.
    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 view2017Ingår i: Movement Disorders, 2017, Vol. 32, s. 175-176Konferensbidrag (Refereegranskat)
    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

  • 17.
    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 Measurement2017Ingår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 7, nr 3, s. 533-543Artikel i tidskrift (Refereegranskat)
    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.

  • 18.
    Doward, Lynda C.
    et al.
    Galen Research, Manchester.
    Meads, David M.
    Galen Research, Manchester.
    Fisk, John
    Dalhousie University, Halifax, Nova Scotia.
    Twiss, James
    Galen Research, Manchester.
    Hagell, Peter
    Lund University.
    Oprandi, Nadia C.
    University of Verona.
    Grand'Maison, François
    Université de Sherbrooke, Sherbrooke, Quebec.
    Bhan, Virender
    Dalhousie University, Halifax, Nova Scotia.
    Arbizu, Txomin
    University of Barcelona.
    Kohlmann, Thomas
    Greifswald University.
    Brassat, David
    Department of Neurology and INSERM U536, University of Toulouse.
    Eckert, Benjamin J.
    Novartis Pharmaceuticals, East Hanover, New Jersey.
    McKenna, Stephen P.
    Galen Research, Manchester.
    International development of the Unidimensional Fatigue Impact Scale (U-FIS)2010Ingår i: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 13, nr 4, s. 463-468Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigue on patients with multiple sclerosis (MS). The objective is to produce eight new language versions of the U-FIS: Canadian-English, Canadian-French, French, German, Italian, Spanish, Swedish, and US-English.

    METHODS: The U-FIS was translated via two translation panels. Cognitive debriefing interviews conducted with patients in each country assessed face and content validity. Scaling and psychometric properties were assessed via survey data with patients in each country completing the U-FIS, Nottingham Health Profile (NHP), and demographic questions.

    RESULTS: Cognitive debriefing interviews demonstrated U-FIS acceptability. Analysis of postal survey data showed all new language versions to be unidimensional. Reliability was high, with test-retest correlations and internal-consistency coefficients exceeding 0.85. Initial evidence of validity was provided by moderate to high correlations with NHP scales. The U-FIS was able to discriminate between groups based on employment status, perceived MS severity, and general health.

    CONCLUSION: The U-FIS is a practical new measure of the impact of fatigue. It was successfully adapted into eight new languages to broaden availability for researchers. Psychometric analyses indicated that the new language versions were unidimensional and reproducible with promising construct validity.

  • 19.
    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 people2012Ingår i: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 66, nr 6, s. 380-388Artikel i tidskrift (Refereegranskat)
    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.

  • 20.
    Eklund, Mona
    et al.
    Department of Health Sciences, Lund University.
    Erlandsson, Lena-Karin
    Department of Health Sciences, Lund University.
    Persson, Dennis
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Rasch analysis of an instrument for measuring occupational value: implications for theory and practice2009Ingår i: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 16, nr 2, s. 118-128Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This study investigated psychometric properties of an instrument for assessing perceived occupational value, the 26-item OVal-pd. Data from 225 Swedish subjects with and without known mental illness were analysed regarding fit to the Rasch measurement model (partial credit model), differential item functioning (DIF), and functioning of the OVal-pd four-category response scale. The reliability (index of person separation, analogous to Cronbach's alpha) was good (0.92) but there were signs of overall and item level (six items) misfit. There was DIF between people with and without mental illness for three items. Iterative deletion of misfitting items resulted in a new 18-item DIF-free scale with good overall and individual item fit and maintained reliability (0.91). There were no disordered response category thresholds. These observations also held true in separate analyses among people with and without mental illness. Thus, the first steps of ensuring that occupational value can be measured in a valid and reliable way have been taken. Still, occupational value is a dynamic construct and the aspects that fit the construct may vary between contexts. This has implications for, e.g., cross-cultural research and calls for identification of a core set of culture-free items to allow for valid cross-cultural comparisons.

  • 21.
    Friedman, Joseph H.
    et al.
    NeuroHealth, Parkinson's Disease and Movement Disorders Center, Warwick, Rhode Island.
    Alves, Guido
    The Norwegian Centre for Movement Disorders, Stavanger University Hospital.
    Hagell, Peter
    Department of Neurology, Lund University Hospital.
    Marinus, Johan
    Department of Neurology, Leiden University Medical Center, Leiden.
    Marsh, Laura
    Department of Psychiatry Johns Hopkins Hospital, Baltimore, Maryland.
    Martinez-Martin, Pablo
    Area of Applied Epidemiology, Center for Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid.
    Goetz, Christopher G.
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Poewe, Werner
    Department of Neurology, Innsbruck Medical University.
    Rascol, Olivier
    Clinical Investigation Center INSERM CIC-9302 and Departments of Clinical Pharmacology and Neurosciences, CHU and University UPS of Toulouse.
    Sampaio, Cristina
    Laboratório de Farmacologia Clínica e Terapêutica e Instituto de Medicina Molecular, Faculdade de Medicina de Lisboa.
    Stebbins, Glenn
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Schrag, Anette
    Department of Clinical Neurosciences, Institute of Neurology, University College London.
    Fatigue rating scales critique and recommendations by the Movement Disorders Society task force on rating scales for Parkinson's disease2010Ingår i: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 25, nr 7, s. 805-822Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Fatigue has been shown to be a consistent and common problem in Parkinson's disease (PD) in multiple countries and cultures. It is one of the most disabling of all symptoms, including motor dysfunction, and appears early, often predating the onset of motor symptoms. Several studies of the epidemiology of fatigue have been published, often using different scales, but few on treatment. The Movement Disorder Society (MDS) commissioned a task force to assess available clinical rating scales, critique their psychometric properties, summarize their clinical properties, and evaluate the evidence in support of their use in clinical studies in PD. Six clinical researchers reviewed all studies published in peer reviewed journals of fatigue in PD, evaluated the scales' previous use, performance parameters, and quality of validation data, if available. Scales were rated according to criteria provided by the MDS. A scale was "recommended" if it has been used in clinical studies beyond the group that developed it, has been used in PD and psychometric studies have established that it is a valid, reliable and sensitive to change in people with PD. Requiring a scale to have demonstrated sensitivity to change in PD specifically rather than in other areas in order to attain a rating of "recommended" differs from the use of this term in previous MDS task force scale reviews. "Suggested" scales failed to meet all the criteria of a "recommended" scale, usually the criterion of sensitivity to change in a study of PD. Scales were "listed" if they had been used in PD studies but had little or no psychometric data to assess. Some scales could be used both to screen for fatigue as well as to assess fatigue severity, but some were only used to assess severity. The Fatigue Severity Scale was "recommended" for both screening and severity rating. The Fatigue Assessment Inventory, an expanded version of the Fatigue severity Scale, is "suggested" for both screening and severity. The Functional Assessment of Chronic Illness Therapy-Fatigue was "recommended" for screening and "suggested" for severity. The Multidimensional Fatigue Inventory was "suggested" for screening and "recommended" for severity. The Parkinson Fatigue Scale was "recommended" for screening and "suggested" for severity rating. The Fatigue Severity Inventory was "listed" for both screening and severity. The Fatigue Impact Scale for Daily Use, an adaptation of the Fatigue Impact Scale was "listed" for screening and "suggested" for severity. Visual Analogue and Global Impression Scales are both "listed" for screening and severity. The committee concluded that current scales are adequate for fatigue studies in PD but that studies on sensitivity and specificity of the scales are still needed.

  • 22.
    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 adolescents2017Ingår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 45, nr 3, s. 253-259Artikel i tidskrift (Refereegranskat)
    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.

  • 23.
    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 ungdomar2017Konferensbidrag (Övrigt vetenskapligt)
    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.

  • 24.
    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 Adolescents2017Konferensbidrag (Övrigt vetenskapligt)
  • 25.
    Garmy, Pernilla
    et al.
    Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO). Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Idecrans, Therese
    Högskolan Kristianstad, Fakulteten för hälsovetenskap.
    Hertz, Malin
    Högskolan Kristianstad, Fakulteten för hälsovetenskap.
    Sollerhed, Ann-Christin
    Högskolan Kristianstad, Fakulteten för lärarutbildning, Avdelningen för humaniora. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön Children's and Young People's Health in Social Context (CYPHiSCO).
    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.
    Sömn, hälsa och nattliga skärmvanor hos tonåringar2019Konferensbidrag (Refereegranskat)
  • 26.
    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?2015Ingår i: Parkinsonjournalen, ISSN 1104-2435, nr 2, s. 40-42Artikel i tidskrift (Övrig (populärvetenskap, 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.

  • 27.
    Hagell, Peter
    Lund University Hospital.
    Compliance and noncompliance in neuroscience2000Ingår i: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 32, nr 3, s. 182-184Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Among the responses to this month's question, the most common strategy for motivating compliance is providing information. This finding is also supported with the example from Australia, where stoke sufferers are highly compliant with any intervention aimed at prevention of future strokes. In this case, the high level of compliance and (probably) motivation can be explained by the fact that stroke is potentially fatal and highly disabling. Other important issues also were identified in the responses: (a) patients' trust and belief in healthcare professionals in terms of providing information and motivation, and (b) a lack of motivation in some patients who simply do not want to comply and prefer a certain level of seizure activity or other impairments and disabilities over the potential side effects of the treatment. This raises another question that goes beyond the concept of compliance and noncompliance: How does the system comply to the patient? I will leave this topic open, and I welcome comments for a future round of discussion here at Global Views.

  • 28.
    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 sclerosis2012Konferensbidrag (Refereegranskat)
  • 29.
    Hagell, Peter
    Lund University.
    Feasibility and linguistic validity of the Swedish version of the PDQ-39.2005Ingår i: Expert review of pharmacoeconomics & outcomes research, ISSN 1473-7167, E-ISSN 1744-8379, Vol. 5, nr 2, s. 131-136Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The Parkinson's Disease Questionnaire - 39 is the most widely used disease-specific health status questionnaire for Parkinson's disease. Evaluations of various language versions have focused on psychometric properties, whereas documented evaluations regarding linguistic validity, respondent burden and questionnaire content are largely lacking. Work with the Swedish Parkinson's Disease Questionnaire - 39 has taken these aspects into account, which has resulted in a linguistically revised version which is currently being evaluated. Initial observations indicate that the revision rectified linguistic but not nonlinguistic problems, and that its feasibility in terms of respondent burden in more advanced disease can be challenged. There are also indications for the need for content improvements. These experiences are discussed along with their implications.

  • 30.
    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?2017Konferensbidrag (Övrigt vetenskapligt)
    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.

  • 31.
    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 activities of daily living in Parkinson's disease: on a road to nowhere and back again?2019Ingår i: Measurement, ISSN 0263-2241, E-ISSN 1873-412X, Vol. 132, s. 109-124Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Parkinson's disease (PD) is a progressive neurodegenerative disorder associated with increasing disability and limitations in performance of activities of daily living (ADL) despite availability of effective symptomatic therapy. Following an overview of classical test theory (CTT) and Rasch measurement theory (RMT), the case of a clinical PD trial aiming to demonstrate ADL improvements by using the ADL section (part II) of the Unified PD Rating Scale (UPDRS) to measure ADL outcomes is considered and central questions related to its validity and interpretation are addressed. It is found that while CTT did not detect any issues, RMT in combination with conceptual considerations seriously challenged the role of the UPDRS II as an ADL outcome measure. Results are discussed from historical, methodological and clinical perspectives. (C) 2018 Elsevier Ltd. All rights reserved.

  • 32.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Nursing and multidisciplinary interventions for Parkinson's disease: what is the evidence?2007Ingår i: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 13, nr Suppl.3, s. S501-S508Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This paper reports the interim results of an ongoing systematic review of the available evidence for the effectiveness of nursing care for people with Parkinson's disease (PD). Five clinical and four health-economic evaluations suggest that the clinical and cost effectiveness of nursing care for PD remain inconclusive. This is in contrast to clinical experience and may be due to issues related to study designs, study interventions, and the outcome measures used. More studies are needed and may benefit from considering specific interventions evaluated using outcome measures that are valid and responsive representations of their expected outcomes.

  • 33.
    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-centered care, what is it and how can it be measured?2019Ingår i: Rheumatology, ISSN 1462-0324, E-ISSN 1462-0332, Vol. 58Artikel i tidskrift (Övrigt vetenskapligt)
  • 34.
    Hagell, Peter
    Department of Clinical Neuroscience, Lund University Hospital .
    Postoperative pain control after craniotomy1999Ingår i: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 31, nr 1, s. 47-49Artikel i tidskrift (Övrigt vetenskapligt)
  • 35.
    Hagell, Peter
    Lund University Hospital.
    Restorative neurology in movement disorders2000Ingår i: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 32, nr 5, s. 256-262Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Cell replacement for restoration of neurological functions in patients with movement disorders has been investigated for more than 15 years. Initial attempts used autologous adrenal medulla grafts implanted into the denervated striatum of patients with Parkinson's disease (PD). This approach was soon abandoned in favor of intrastriatal implantation of human embryonic mesencephalic tissue, rich in dopaminergic neurons. Available data from grafted PD patients show long-term (up to 10 years) graft survival and clinical benefits. The pattern and magnitude of symptomatic relief following transplantation, however, are incomplete and the outcome varies among patients. The need for large amounts of human embryonic tissue has to be circumvented and a better understanding of the relationship between graft placement and symptomatic recovery is necessary before this procedure can be offered to larger groups of patients. Clinical trials in Huntington's disease have so far shown inconclusive results. Neural cell replacement therapy is still an experimental procedure, but has the potential to become a future restorative treatment in PD and other movement disorders.

  • 36.
    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 disease2017Konferensbidrag (Övrigt vetenskapligt)
    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.

  • 37.
    Hagell, Peter
    Lund University.
    Self-reported health in people with Parkinson's disease left untreated at diagnosis2007Ingår i: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 78, nr 5Artikel i tidskrift (Refereegranskat)
  • 38.
    Hagell, Peter
    Lund University Hospital.
    Should boxing be banned?2000Ingår i: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 32, nr 2, s. 126-128Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [en]

    Should boxing be banned? Do the ever-so-obvious risks outweigh everyone's freedom to choose whether to expose oneself to these risks by taking up the sport? On an official level, the RCN in the UK has taken its stand--it does not! So has also the British Medical Association (BMA)--it does! With few exceptions, the responding nurses from Europe, America, and Australia in this month's column seem to agree with the official nursing standpoint in the UK, also emphasizing the importance that any person's choice not only should be free, but also informed. In the United States, where boxing perhaps has its strongest tradition and deepest roots, the whole issue hardly seems to be one of much realistic debate at all. In Australia, however, the debate seems to be similar to that in the UK. What would a total ban on boxing lead to? No more boxing and no more neurological consequences due to boxing? Doubtfully, boxing would probably continue anywhere where there is an interest for it, and a ban might actually increase the attraction to the sport for some people. In this scenario there is also a risk that the safety precautions would be seriously compromised. This month's question exemplifies an area in which it is very important for nurses to make a stand, on a personal as well as on a collective level. As indicated by several of this month's replies, the issue is probably not merely about boxing but also about to what extent people's choices should be controlled by bans and where the line should be drawn. To what extent are people competent to make their own decisions and where/when/how should "big brother" (in this case as represented by, among others, nursing as a profession) be allowed to step in? Anyone who has any further contributions or comments on this issue is welcome to contact me!

  • 39.
    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 note2013Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, nr 1 Suppl., s. 63-64Artikel i tidskrift (Refereegranskat)
  • 40.
    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 statistics2014Ingår i: Open Journal of Statistics, ISSN 2161-718X, E-ISSN 2161-7198, Vol. 4, nr 6, s. 456-465Artikel i tidskrift (Refereegranskat)
    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.

  • 41.
    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 note2015Ingår i: Rasch Measurement Transactions, ISSN 1051-0796, Vol. 28, nr 4, s. 1487-1489Artikel, forskningsöversikt (Övrigt vetenskapligt)
  • 42.
    Hagell, Peter
    Lund University Hospital.
    Timed tests in the clinical assessment of motor function in Parkinson's disease2000Ingår i: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 32, nr 6, s. 331-336Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The clinical evaluation section of the Core Assessment Program for Intracerebral Transplantations (CAPIT) for Parkinson's disease (PD) was developed to standardize the clinical evaluation in cell transplantation trials, but also has been used in other therapeutic trials for PD. An important part of the CAPIT protocol is the standardized timed tests of motor function. In a recent revision of CAPIT, the Core Assessment Program for Surgical Interventional Therapies in Parkinson's Disease (CAPSIT-PD), the timed tests have been modified. There are some practical considerations that need attention when timed tests are used. They should be performed under the same circumstances with the patient in a defined condition and according to the same instructions from one time to another. Also, the examiner should not assist the patient, either directly or indirectly, by cueing. In addition to quantification of motor function as an outcome measure in therapeutic trials and other clinical research, timed tests also can be used for determining dopaminergic responsiveness in differential diagnosis of parkinsonism. Our experience is that timed tests are valuable quantitative and objective measures in scientific as well as clinical assessments of PD. Practical guidelines for and examples of these areas of use are provided.

  • 43.
    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 disease2014Konferensbidrag (Refereegranskat)
    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.

  • 44.
    Hagell, Peter
    Universitetssjukhuset, Lund.
    [Treatment of Parkinsonism--apomorphine increases therapeutic arsenal].1994Ingår i: Vårdfacket, ISSN 0347-0911, Vol. 18, nr 10Artikel i tidskrift (Övrigt vetenskapligt)
  • 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 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 Interview2017Ingår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, nr 2, s. 272-278Artikel i tidskrift (Refereegranskat)
    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.

  • 46.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Broman, Jan-Erik
    Department of Neuroscience, Psychiatry, Uppsala University.
    Measurement properties and hierarchical item structure of the Epworth Sleepiness Scale in Parkinson's disease2007Ingår i: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 16, nr 1, s. 102-109Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this work was to evaluate the measurement properties and hierarchical item structure of the Epworth Sleepiness Scale (ESS) in patients with Parkinson's disease (PD). Data were taken from a cross-sectional study regarding fatigue and sleep-related aspects of PD. One hundred and eighteen consecutive patients with neurologist-diagnosed PD without significant co-morbidities (54% men; mean age, 64 years; mean PD duration, 8.4 years) from four Swedish neurological outpatient clinics participated. The ESS displayed good data quality with few missing items (0-2.5%): good reliability (Cronbach's alpha, 0.84), marginal floor and no ceiling effects (1.7% and 0% respectively), and differentiated between those reporting problems staying awake during the past month and those who did not. Item-total correlations, factor and Rasch analyses indicated that items tap a single underlying construct. Rasch analysis supported basic rating scale assumptions and demonstrated an item hierarchy similar to that previously found in patients with other sleep disorders. Gaps in the levels of sleep propensity covered by ESS items and their response options were identified at the higher and lower ends of the underlying sleepiness continuum. This study provides an evidence base for using the ESS in PD by demonstrating good psychometric properties and a stable hierarchical item structure. However, addition of new items and use of Rasch scoring has potential to further enhance the clinical usefulness of the ESS.

  • 47.
    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 elderly2015Konferensbidrag (Refereegranskat)
    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. 

  • 48.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Brundin, L.
    Department of Clinical Sciences, Section of Psychiatry, Lund University.
    Towards an understanding of fatigue in Parkinson disease2009Ingår i: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 80, nr 5, s. 489-492Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVES: To gain an improved understanding of fatigue in Parkinson disease (PD) by exploring possible predictors among a wide range of motor and non-motor aspects of PD.

    METHODS: 118 consecutive PD patients (54% men; mean age 64 years) were assessed regarding fatigue, demographics and a range of non-motor and motor symptoms. Variables significantly associated with fatigue scores in bivariate analyses were used in multiple regression analyses with fatigue as the dependent variable.

    RESULTS: Fatigue was associated with increasing Hoehn & Yahr stages, specifically the transition from stages I-II to stages III-V. Regression analysis identified five significant independent variables explaining 48% of the variance in fatigue scores: anxiety, depression, lack of motivation, Unified PD Rating Scale (UPDRS) motor score and pain. Gender, age, body mass index, PD duration, motor fluctuations, dyskinesias, symptomatic orthostatism, thought disorder, cognition, drug treatment, sleep quality and daytime sleepiness were not significantly associated with fatigue scores. When considering individual motor symptom clusters instead of the UPDRS motor score, only axial/postural/gait impairment was associated with fatigue.

    CONCLUSIONS: This study found fatigue to be primarily associated with symptoms of depression and anxiety, and with compromised motivation, parkinsonism (particularly axial/postural/gait impairment) and pain. These results are in agreement with findings in other disorders and imply that fatigue should be considered a separate PD entity differing from, for example, excessive daytime sleepiness. Fatigue may have a distinguished neurobiological background, possibly related to neuroinflammatory mechanisms. This implies that novel treatment options, including anti-inflammatory therapies, could be effective.

  • 49.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Brundin, P
    Lund University Hospital.
    Cell survival and clinical outcome following intrastriatal transplantation in Parkinson disease2001Ingår i: Journal of Neuropathology and Experimental Neurology, ISSN 0022-3069, E-ISSN 1554-6578, Vol. 60, nr 8, s. 741-752Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Intrastriatal transplantation of embryonic dopaminergic neurons is currently explored as a restorative cell therapy for Parkinson disease (PD). Clinical results have varied, probably due to differences in transplantation methodology and patient selection. In this review, we assess clinical trials and autopsy findings in grafted PD patients and suggest that a minimum number of surviving dopaminergic neurons is required for a favorable outcome. Restoration of [18F]-fluorodopa uptake in the putamen to about 50% of the normal mean seems necessary for moderate to marked clinical benefit to occur. Some studies indicate that this may require mesencephalic tissue from 3-5 human embryos implanted into each hemisphere. The volume, density and pattern of fiber outgrowth and reinnervation, as well as functional integration and dopamine release. are postulated as additional important factors for an optimal clinical outcome. For neural transplantation to become a feasible therapeutic alternative in PD, graft survival must be increased and the need for multiple donors of human embryonic tissue substantially decreased or alternate sources of donor tissue developed. Donor cells derived from alternative sources should demonstrate features comparable to those associated with successful implantation of human embryonic tissue before clinical trials are considered.

  • 50.
    Hagell, Peter
    et al.
    Lund University.
    Cenci, M Angela
    Wallenberg Neuroscience Center.
    Dyskinesias and dopamine cell replacement in Parkinson's disease: a clinical perspective.2005Ingår i: Brain Research Bulletin, ISSN 0361-9230, E-ISSN 1873-2747, Vol. 68, nr 1-2Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Both increased and decreased dyskinesias have been reported from open label clinical trials of transplantation of human embryonic dopamine rich tissue in Parkinson's disease patients. In the first double-blind clinical transplantation trial, 15% of the grafted patients developed severe postoperative dyskinesias in the "off" phase. Since then, postoperative off-medication dyskinesias have been reported from two additional series of grafted patients. However, such dyskinesias are probably not a novel phenomenon. These dyskinesias have shown a different temporal development postoperatively compared to the antiparkinsonian graft effects, and no significant relationship with the magnitude of graft-derived dopaminergic reinnervation or symptomatic relief. However, positron emission tomography studies have indicated that an unbalanced putaminal dopaminergic function may contribute to this postoperative complication. While there is little doubt that intrastriatal grafts can induce dyskinesias, these appear to differ from common drug-induced dyskinesias. The term graft-induced dyskinesias (GID) is therefore suggested to more clearly identify this complication. While GID bear some phenomenological resemblance to biphasic drug induced dyskinesias, the mechanism(s) behind this complication remains obscure. Available data are scarce but allow for hypotheses to be generated that could (and should) be addressed in experimental animals.

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