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  • 1.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Rosblom, Tomas
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    Pålhagen, Sven
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    A Swedish version of the 16-item Parkinson Fatigue Scale (PFS-16)2012In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 125, no 4, p. 288-292Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 2.
    Höglund, A.
    et al.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Broman, J.-E.
    Department of Neuroscience, Psychiatry, Uppsala University.
    Pålhagen, S.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Fredrikson, S.
    Department of Clinical Neuroscience, Karolinska Institutet.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE.
    Is excessive daytime sleepiness a separate manifestation in Parkinson's disease?2015In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 132, no 2, p. 97-104Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 3.
    Kim, M.-Y.
    et al.
    Department of Health Sciences, Lund University.
    Dahlberg, A.
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Respondent burden and patient-perceived validity of the PDQ-392006In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 113, no 2, p. 132-137Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To evaluate the respondent burden and patient-perceived content validity of the Parkinson's disease (PD)-specific health status questionnaire PDQ-39, and the linguistic validity of its revised Swedish version.

    MATERIALS AND METHODS: Eighteen PD patients completed the revised Swedish version of the PDQ-39. Respondent burden was assessed by recording the time taken to complete the questionnaire. Content and linguistic validity was evaluated qualitatively.

    RESULTS: Patients with mild, moderate and advanced PD needed a mean time of 9.5, 11.3 and 20.1 min, respectively, to complete the PDQ-39. One-third of the patients identified irrelevant items and 50% identified important health-related areas that were missing. Revisions had eliminated previous linguistic problems with the Swedish PDQ-39.

    CONCLUSIONS: Undue respondent burden challenged the appropriateness of the PDQ-39 among patients with more advanced disease. Overall content validity was acceptable but compromised by lack of important content areas. Observations supported the linguistic validity of the revised Swedish PDQ-39.

  • 4.
    Knutsson, I.
    et al.
    Department of Health Sciences, Lund University.
    Samuelson, K..
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Stability of rating scale response category interpretations in neurological disorders2013In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 128, no 4, p. 265-272Article in journal (Refereed)
    Abstract [en]

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

  • 5.
    Nilsson, Maria H.
    et al.
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Freezing of Gait Questionnaire: validity and reliability of the Swedish version2009In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 120, no 5, p. 331-334Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Patient-reported assessments of freezing of gait (FOG) in Parkinson's disease (PD), such as the FOG questionnaire (FOGQ), are needed because FOG is difficult to assess objectively. However, the measurement properties of the FOGQ have been sparsely assessed.

    AIM: To assess the measurement properties of the Swedish FOGQ, and to explore relationships between FOGQ scores and other aspects of PD. Methods - Thirty-seven people with PD were assessed with the FOGQ, Unified PD Rating Scale (UPDRS), Hoehn and Yahr (HY), Falls-Efficacy Scale [FES(S)], timed gait tests, and the SF-36 physical functioning (PF) scale.

    RESULTS: Mean (SD) FOGQ item scores ranged between 1.3 and 2.1 (1.2-1.5); corrected item-total correlations ranged between 0.80 and 0.94. Reliability was 0.95. Mean (SD) and median (q1-q3) FOGQ scores were 9.6 (7.4) and 10 (2-15). Floor and ceiling effects were < or =5.4%. FOGQ correlated strongest with UPDRS part II (ADL), UPDRS item 14 (freezing), and HY (r(S) 0.65-0.66). FOGQ scores correlated with PD duration, the Timed Up and Go test, dyskinesia, motor fluctuations, FES(S), and PF scores (r(S) 0.40-0.62). Fallers had higher FOGQ scores than non-fallers (median 12.5 vs 5.0).

    CONCLUSION: Data support the measurement properties of the Swedish FOGQ by replicating and extending previous psychometric reports.

  • 6.
    Nilsson, Maria H.
    et al.
    Lunds universitet.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Iwarsson, S
    Lunds universitet.
    Psychometric properties of the general self-efficacy scale in Parkinson's disease2015In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 132, no 2, p. 89-96Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: This study aimed to investigate the psychometric properties of the General Self-Efficacy Scale (GSE) in people with Parkinson's disease (PD). More specifically, we investigated data completeness, scaling assumptions, targeting, reliability, and construct validity.

    MATERIALS AND METHODS: This study involves data available from two different projects that included people diagnosed with PD for at least 1 year, yielding two samples (1 and 2). The combined total sample (N = 346; 60% men) had a mean (SD) age and PD duration of 71 (8.9) and 9 years (6.3), respectively. Both samples received a self-administered survey by mail, which was administered twice in sample 2. Additional data (e.g., clinical assessments) were available for Sample 1.

    RESULTS: Total GSE scores were computable for 336 participants (97%). Corrected item-total correlations exceeded 0.4. Principal component analyses identified one component (the eigenvalue of the first component extracted was 6.9), explaining 69% of the total variance. Floor and ceiling effects were < 6%. Internal consistency (coefficient alpha) was 0.95. Analyses of test-retest reliability yielded (ICC) values from 0.69 to 0.80. The highest value refers to those (n = 47) with identical self-ratings of mobility (in the on condition) at both tests; the standard error of measurement was 3.1 points. Construct validity was further supported by correlations in accordance with a priori expectations.

    CONCLUSIONS: This study provides support for the validity and reliability of GSE scores in people with PD; the GSE can thus serve as a valuable outcome measurement in clinical practice and research.

  • 7.
    Rosqvist, Kristina
    et al.
    Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Odin, P.
    Lund University.
    Ekström, H.
    Lund University.
    Iwarsson, S.
    Lund University.
    Nilsson, M. H.
    Lund University.
    Factors associated with life satisfaction in Parkinson's disease2017In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 136, no 1, p. 64-71Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To identify factors associated with life satisfaction (LS) in people with Parkinson's disease (PD), including a specific focus on those with late-stage PD.

    MATERIAL AND METHODS: The study included 251 persons with PD (median age 70 years; PD duration 8 years). Analyses involved the total sample and a subsample with late-stage PD, that is Hoehn and Yahr stages IV and V (n=62). LS was assessed with item 1 of the Life Satisfaction Questionnaire (LiSat-11). Simple logistic regression analyses were performed for both the total sample and for the subsample with late-stage PD. For the total sample, a multivariable logistic regression analysis was also performed.

    RESULTS: In the total sample, 12 of the 20 independent variables were significantly associated with LS: need of help with ADL; walking difficulties; number of non-motor symptoms (NMS); fatigue; depressive symptoms; general self-efficacy; motor symptoms; pain; PD severity; freezing episodes; gender (woman); and fluctuations. When controlling for age and gender in the multivariable logistic regression model, depressive symptoms were negatively associated with high LS and general self-efficacy was positively associated with high LS. In late-stage PD, simple logistic regression analyses (controlling for age and gender) identified the following factors as associated with LS: number of NMS, general self-efficacy, walking difficulties and fatigue.

    CONCLUSIONS: This study provides new knowledge on factors associated with LS in a PD sample, including those with late-stage PD. As the ultimate goal for PD care should be improvement in LS, the results have direct clinical implication.

  • 8.
    Steen Krawcyk, R.
    et al.
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Sjödahl Hammarlund, Catharina
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Danish translation and psychometric testing of the Rivermead Mobility Index2013In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 128, no 4, p. 20-25Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The Rivermead Mobility Index (RMI) is widely used in several neurological conditions including multiple sclerosis (MS), but its psychometric properties have not been documented in Scandinavia. Therefore, the aim of the study was to translate RMI from UK English into Danish and conduct an initial psychometric testing of the Danish RMI. MATERIALS AND METHODS: The Danish translation conducted by the forward-backward method was first field-tested regarding user-friendliness and relevance. It was then psychometrically tested among 40 outpatients with MS regarding unidimensionality (corrected item-total correlations, adherence to an assumed Guttman response pattern), reliability, and construct validity. RESULTS: Field testing found the Danish RMI relevant and user-friendly. Corrected item-total correlations were ≥0.47 and item responses fitted the Guttman pattern. There was a 47.5% ceiling effect, and reliability was 0.91. Correlations supported construct validity. CONCLUSION: The Danish RMI is user-friendly, unidimensional, reliable, and valid. The results correspond to those previously reported with the original UK RMI version. Ceiling effects are limiting but sample related. Larger samples representing a wider variety of MS severities are needed for firmer evaluation of the Danish RMI.

  • 9.
    Timpka, Jonathan
    et al.
    Lund University.
    Svensson, J.
    The Swedish Institute for Health Economics (IHE), Lund.
    Nilsson, M. H.
    Skåne University Hospital, Malmö.
    Pålhagen, S.
    Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health.
    Odin, P.
    Lund University.
    Workforce unavailability in Parkinson's disease2017In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 135, no 3, p. 332-338Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Individuals with Parkinson's disease (PD) become unavailable in the workforce earlier than comparable members of the general population. This may result in significant social insurance expenses, but as workforce participation can be a source for social interaction and a vital part of the personal identity, there are likely to be personal implications extending far beyond the economic aspects. This study aimed to identify aspects that may contribute to workforce unavailability in people with PD.

    MATERIALS & METHODS: This was a cross-sectional registry study using data from the Swedish national quality registry for PD and included persons with PD in Skåne County, Sweden who were younger than 65 years. Variables were selected from the registry based on earlier studies and clinical experience and were tested for association with unavailability in the workforce: first in a series of simple regression analyses and then in a multiple logistic regression analysis.

    RESULTS: A total of 99 persons with PD-of whom 59 were available and 40 were unavailable in the workforce-were included in the study. Age (OR per year: 1.47, 95% CI: 1.18-1.85; P < 0.01) and anxiety (OR: 6.81, 95% CI: 1.20-38.67; P = 0.03) were significant contributing factors for unavailability in the workforce.

    CONCLUSIONS: Based on the findings in this exploratory study, anxiety-a potentially modifiable factor-and age may be contributing factors for workforce unavailability in PD. However, prospective studies are warranted to confirm the findings and the causation of the association between anxiety and workforce unavailability needs to be clarified.

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