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  • 101.
    Hubel, Marie
    et al.
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Hagell, Peter
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Sivberg, Bengt
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Psychometric properties of the questionnaire version (ERS-Q) of the Environmental Rating Scale (ERS) for assessment of residential programmes for individuals with autism2010In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 12, no 4, p. 245-256Article in journal (Refereed)
    Abstract [en]

    The Environmental Rating Scale (ERS) is the only autism spectrum disorders (ASD) specific tool for assessment of residential services and treatment models. However, one limitation with the ERS is its dependence on expert observations and interviews, particularly in larger scale studies. The ERS has therefore been adapted into a staff self-report questionnaire (ERS-Q). Here the measurement properties of the ERS-Q were examined according to traditional test theory criteria. Data provided support for summation of raw item scores into total and subscale ERS-Q scores and item-total correlations indicated that items within scales tap a common construct, suggesting that the ERS-Q is useful in survey as well as interventional studies. As such the ERS-Q appears a valuable addition to the current ASD research toolbox. The Environmental Rating Scale (ERS) is the only autism spectrum disorders (ASD) specific tool for assessment of residential services and treatment models. However, one limitation with the ERS is its dependence on expert observations and interviews, particularly in larger scale studies. The ERS has therefore been adapted into a staff self-report questionnaire (ERS-Q). Here the measurement properties of the ERS-Q were examined according to traditional test theory criteria. Data provided support for summation of raw item scores into total and subscale ERS-Q scores and item-total correlations indicated that items within scales tap a common construct, suggesting that the ERS-Q is useful in survey as well as interventional studies. As such the ERS-Q appears a valuable addition to the current ASD research toolbox.

  • 102.
    Håkansson, Carita
    et al.
    Lunds universitet.
    Wagman, Petra
    Jönköping universitet.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Construct validity of a revised version of the occupational balance questionnaire2019In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, p. 1-9Article in journal (Refereed)
    Abstract [en]

    Background: Occupational balance is fundamental to occupational therapy and occupational science. Therefore, the Occupational Balance Questionnaire (OBQ) was developed and has previously been found psychometrically valid according to classical test theory. Aim: To investigate the internal construct validity of the OBQ using Rasch measurement theory. Material and methods: Data from two general population samples were used to investigate the psychometric properties of the OBQ according to Rasch measurement theory. Results: The analyses identified problems with the current response scale and multidimensionality of two items. As a result, a revised version, the OBQ11, was suggested and exhibited response categories that worked properly, good reliability (0.92), model fit and measurement invariance across age and gender groups. The hierarchical item ordering was in agreement with previous research. Conclusion: The new OBQ11 satisfies the measurement criteria defined by the Rasch model. However, further studies of additional samples are needed to validate its generic properties. Significance: The purpose of the OBQ11 is to measure occupational balance of individuals or groups, and to identify aspects of occupational balance in need of improvement. Our observations suggest that the OBQ11 is a valid and promising complement to other instruments.

  • 103.
    Höglund, A.
    et al.
    Karolinska institutet.
    Broman, J. -E
    Uppsala universitet.
    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.
    Palhagen, S.
    Karolinska institutet.
    Fredrikson, S.
    Karolinska institutet.
    Excessive daytime sleepiness in Parkinson's disease: a 10-year longitudinal study2017In: European Journal of Neurology, ISSN 1351-5101, E-ISSN 1468-1331, Vol. 24, p. 485-485Article in journal (Other academic)
  • 104.
    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.

  • 105.
    Höglund, Arja
    et al.
    Karolinska Institutet.
    Broman, JanErik
    Uppsala University.
    Pålhagen, Sven
    Karolinska Institutet.
    Fredrikson, Sten
    Karolinska Institutet.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Excessive Daytime Sleepiness in Parkinson’s Disease – relationship to motor and non-motor symptoms2014Conference paper (Refereed)
    Abstract [en]

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

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

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

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

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

  • 106.
    Höglund, Arja
    et al.
    Karolinska institutet.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Broman, Jan-Erik
    Uppsala universitet.
    Palhagen, Sven
    Karolinska institutet.
    Sorjonen, Kimmo
    Karolinska institutet.
    Fredrikson, Sten
    Karolinska institutet.
    A 10-year follow-up of excessive daytime sleepiness in Parkinson's disease2019In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, Vol. 2019, article id 5708515Article in journal (Refereed)
    Abstract [en]

    Introduction. The aim of this prospective study was to investigate excessive daytime sleepiness (EDS) over time and in relation to other PD symptoms among people with Parkinson's disease (PD). Methods. Thirty participants younger than 65 years with PD were randomly selected. At inclusion, mean (SD) disease duration was 6.2 (4.8) years and median (min-max) severity of PD was classified as stage II (stages I-III) according to Hoehn and Yahr. Participants were followed annually for 10 years with clinical assessments of their PD status, medications, comorbidities, and a standardized interview about their sleep habits and occurrence of daytime sleepiness. EDS was assessed by the self-reported Epworth Sleepiness Scale (ESS). Seventeen participants completed the 10-year longitudinal follow-up. Results. Fifteen of 30 persons were classified to suffer from EDS (ESS > 10) at baseline. At the group level, EDS remained stable over 10 years and did not deteriorate in parallel with worsening of motor symptoms. Furthermore, EDS was associated with sleep quality, fatigue, anxiety, depression, and axial/postural/gait impairments. Conclusions. EDS did not worsen over 10 years, although other PD aspects did. EDS in PD seems to be a complex nonmotor symptom that is unrelated to deterioration of motor symptoms in PD.

  • 107.
    Jakobsson, Ulf
    et al.
    Department of Health Sciences, Lund University.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Lindskov, Susanne
    Kristianstad University, Forskningsplattformen Hälsa i samverkan. Department of Geriatrics and Neurology, Central Hospital, Kristianstad.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Construct validity of the SF-12 in three different samples2012In: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 18, no 3, p. 560-566Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 108.
    Johansson, Maurits
    et al.
    Lund University.
    Johansson, Per
    Lund University & Gothenburg University.
    Stomrud, Erik
    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.
    Hansson, Oskar
    Lund University.
    Psychometric testing of a Swedish version of the Apathy Evaluation Scale2017In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 71, no 6, p. 477-484Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 109.
    Johansson, Maurits
    et al.
    Lund University.
    Johansson, Per
    Lund University.
    Stomrud, Erik
    Lund University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hansson, Oskar
    Lund University.
    Psychometric testing of a Swedish version of the Apathy Evaluation Scale in three clinical cohorts2017Conference paper (Refereed)
  • 110.
    Jonasson, Stina B
    et al.
    Lund University & Skåne University Hospital.
    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.
    Hariz, Gun-Marie
    Umeå University.
    Ivarsson, Susanne
    Lund University.
    Nilsson, Maria H
    Skåne University Hospital & Lund University.
    Psychometric evaluation of the Parkinson’s disease Activities of Daily Living Scale2017In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 111.
    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.

  • 112.
    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.

  • 113.
    Knutsson, Ida
    et al.
    Department of Health Sciences, Lund University.
    Rydström, Helena
    Department of Health Sciences, Lund University.
    Reimer, Jan
    Nyberg, Per
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Interpretation of response categories in patient-reported rating scales: a controlled study among people with Parkinson's disease2010In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 8, p. 61-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Unambiguous interpretation of ordered rating scale response categories requires distinct meanings of category labels. Also, summation of item responses into total scores assumes equal intervals between categories. While studies have identified problems with rating scale response category functioning there is a paucity of empirical studies regarding how respondents interpret response categories. We investigated the interpretation of commonly used rating scale response categories and attempted to identify distinct and roughly equally spaced response categories for patient-reported rating scales in Parkinson's disease (PD) and age-matched control subjects.

    METHODS: Twenty-one rating scale response categories representing frequency, intensity and level of agreement were presented in random order to 51 people with PD (36 men; mean age, 66 years) and 36 age-matched controls (14 men; mean age, 66). Respondents indicated their interpretation of each category on 100-mm visual analog scales (VAS) anchored by Never--Always, Not at all--Extremely, and Totally disagree--Completely agree. VAS values were compared between groups, and response categories with mean values and non-overlapping 95% CIs corresponding to equally spaced locations on the VAS line were sought to identify the best options for three-, four-, five-, and six-category scales.

    RESULTS: VAS values did not differ between the PD and control samples (P = 0.286) or according to educational level (P = 0.220), age (P = 0.220), self-reported physical functioning (P = 0.501) and mental health (P = 0.238), or (for the PD sample) PD duration (P = 0.213) or presence of dyskinesias (P = 0.212). Attempts to identify roughly equally spaced response categories for three-, four-, five-, and six-category scales were unsuccessful, as the 95% CIs of one or several of the identified response categories failed to include the criterion values for equal distances.

    CONCLUSIONS: This study offers an evidence base for selecting more interpretable patient-reported rating scale response categories. However, problems associated with raw rating scale data, primarily related to their ordinal structure also became apparent. This argues for the application of methodologies such as Rasch measurement. Rating scale response categories need to be treated with rigour in the construction and analysis of rating scales.

  • 114.
    Kumlien, Christine
    et al.
    Malmö University.
    Miller, Michael
    Lund University.
    Fagerström, Cecilia
    Blekinge County Council.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Evaluation of self-management program outcomes: Adaptation and testing of a Swedish version of the Health Education Impact Questionnaire (heiQ)2018In: Journal of Applied Measurement, ISSN 1529-7713, Vol. 19, no 3, p. 303-319Article in journal (Refereed)
    Abstract [en]

    Self-management programs require a range of indicators to evaluate their outcomes. The Health Education Impact Questionnaire (heiQ) was developed to meet this need. The heiQ contains 40 items with 4 response categories, representing eight scales. We developed a Swedish version of the heiQ that was tested by cognitive interviews (n=15) and psychometrically (n=177) using classical test theory (CTT) and Rasch measurement theory (RMT). The Swedish heiQ was easily understood by interviewees and met CTT criteria, with supported scaling assumptions (corrected item-total correlations, ≥0.37) and reliability (ordinal alpha ≥0.78). General support was demonstrated for the measurement properties of the eight heiQ scales by acceptable RMT fit. However, there were signs of malfunctioning response categories for four items in two scales, and of suboptimal item coverage of the measurement continua. The Swedish heiQ appears comparable to other available language versions. Further efforts may be needed to optimize response categories and measurement precision. 

  • 115. Li, Jia-Yi
    et al.
    Englund, Elisabet
    Holton, Janice L.
    Soulet, Denis
    Hagell, Peter
    University Hospital, Lund.
    Lees, Andrew J.
    Lashley, Tammaryn
    Quinn, Niall P
    Rehncrona, Stig
    Björklund, Anders
    Widner, Håkan
    Revesz, Tamas
    Lindvall, Olle
    Brundin, Patrik
    Lewy bodies in grafted neurons in subjects with Parkinson's disease suggest host-to-graft disease propagation2008In: Nature medicine, ISSN 1546-170X, Vol. 14, no 5, p. 501-503Article in journal (Refereed)
    Abstract [en]

    Two subjects with Parkinson's disease who had long-term survival of transplanted fetal mesencephalic dopaminergic neurons (11-16 years) developed alpha-synuclein-positive Lewy bodies in grafted neurons. Our observation has key implications for understanding Parkinson's pathogenesis by providing the first evidence, to our knowledge, that the disease can propagate from host to graft cells. However, available data suggest that the majority of grafted cells are functionally unimpaired after a decade, and recipients can still experience long-term symptomatic relief.

  • 116.
    Lindholm, Beata
    et al.
    Skåne University Hospital, Malmö.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Hansson, Oskar
    Lund University.
    Nilsson, Maria H.
    Lund University.
    Factors associated with fear of falling in people with Parkinson’s disease2014In: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 14, p. 19-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

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

    METHODS:

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

    RESULTS:

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

    CONCLUSIONS:

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

  • 117. Lindholm, Beata
    et al.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Hansson, Oskar
    Nilsson, Maria H.
    Prediction of Falls and/or Near Falls in People with Mild Parkinson's Disease2015In: PloS one, ISSN 1932-6203, Vol. 10, no 1, p. e0117018-Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 118.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Duzynski, Wojciech
    Skåne University Hospital, Malmö.
    Nilsson, Maria
    Lund University, Lund.
    Future falls and/or near falls in people with Parkinson's disease: sensitivity and specificity of two retropulsion tests2013Conference paper (Refereed)
    Abstract [en]

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

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

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

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

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

  • 119.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Nilsson, Maria
    Lund University.
    Prediction of falls and/or near falls by using tandem gait performance in people with mild Parkinson’s disease2015Conference paper (Refereed)
    Abstract [en]

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

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

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

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

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

  • 120.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Prediction of instability in people with Parkinson's disease - clinical balance and gait tests2013Conference paper (Refereed)
    Abstract [en]

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

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

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

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

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

  • 121.
    Lindholm, Beata
    et al.
    Lund University.
    Nilsson, Maria H
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    The clinical significance of 10-m walk test standardizations in Parkinson's disease2018In: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 265, no 8, p. 1829-1835Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 122.
    Lindholm, Beata
    et al.
    Lund University.
    Nilsson, Maria
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    External validation of a 3-step falls prediction model in mild Parkinson’s disease2016In: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 263, no 12, p. 2462-2469Article in journal (Refereed)
    Abstract [en]

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

  • 123.
    Lindholm, Beata
    et al.
    Lund University.
    Oskar, Hansson
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Walking difficulties is the strongest contributing factor to fear of falling among people with mild Parkinson’s disease2013Conference paper (Refereed)
    Abstract [en]

    Objective: Fear of falling is common among people with Parkinson’s disease (PD) and may cause activity limitations and restrictions in participation. The aim of this study was to investigate contributing factors to fall-related self-efficacy in a clinical sample of people with PD.

    Methods: The study included 104 people with PD that visited a neurological clinic during 2006-2011. Those >80 years of age, requiring support in standing or that did not understand the instructions were excluded. Mean (SD) age and PD-duration were 68 (9.4) and 5 (4.2) years, respectively; the mean (SD) “on” phase UPDRS III score was 14.5 (8.1). Fall-related self-efficacy (the dependent variable) was investigated with the Swedish version of the Falls Efficacy Scale, i.e. FES(S). Multiple linear regression analysis included independent variables targeting walking difficulties in daily life, freezing of gait, dyskinesia, fatigue, need of help in daily activities, age, PD-duration, history of falls/near falls, and pain.

    Results: The median FES(S) score was 117 (q1-q3, 70129; minmax, 11130). Three significant independent variables were identified explaining 66% of the variance in FES(S) scores. The strongest contributing factor to fall-related self-efficacy was walking difficulties (explaining 60%), followed by fatigue and need for help in daily activities. These observations suggest that walking difficulties in daily life is the strongest contributing factor to fall-related selfefficacy in a mildly affected PD-sample. Targeting walking difficulties may help reduce fear of falling among people with PD.

  • 124.
    Lindqvist, Daniel
    et al.
    Department of Clinical Sciences, Section of Psychiatry, Lund University Hospital.
    Janelidze, Shorena
    Department of Clinical Sciences, Section of Psychiatry, Lund University Hospital.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Erhardt, Sophie
    Department of Physiology and Pharmacology, Karolinska Institutet.
    Samuelsson, Martin
    Faculty of Health Sciences, Department of Clinical and Experimental Medicine, Psychiatry Section, Linköping University.
    Minthon, Lennart
    Department of Clinical Sciences, Clinical Memory Research Unit, Lund University.
    Hansson, Oskar
    Department of Clinical Sciences, Clinical Memory Research Unit, Lund University.
    Björkqvist, Maria
    Department of Experimental Medicine, Neuronal Survival Unit, Wallenberg Neuroscience Center, Lund University.
    Träskman-Bendz, Lil
    Department of Clinical Sciences, Section of Psychiatry, Lund University Hospital.
    Brundin, Lena
    Department of Clinical Sciences, Section of Psychiatry, Lund University Hospital.
    Interleukin-6 is elevated in the cerebrospinal fluid of suicide attempters and related to symptom severity2009In: Biological Psychiatry, ISSN 0006-3223, E-ISSN 1873-2402, Vol. 66, no 3, p. 287-292Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Depressive disorders are associated with immune system alterations that can be detected in the blood. Cytokine concentrations in cerebrospinal fluid (CSF) and their relationship to aspects of suicidality have previously not been investigated.

    METHODS: We measured interleukin-1beta, interleukin-6 (IL-6), interleukin-8, and tumor necrosis factor-alpha (TNF-alpha) in CSF and plasma of suicide attempters (n = 63) and healthy control subjects (n = 47). Patients were classified according to diagnosis and violent or nonviolent suicide attempt. We evaluated suicidal ideation and depressive symptoms using the Suicide Assessment Scale and the Montgomery-Asberg Depression Rating Scale (MADRS). We also analyzed the relation between cytokines and monoamine metabolites 5-hydroxyindoleacetic acid (5-HIAA), homovanillic acid (HVA), and 3-methoxy-4-hydroxyphenylglycol (MHPG) in CSF, as well as the integrity of the blood-brain barrier as reflected by the CSF:serum albumin ratio.

    RESULTS: IL-6 in CSF was significantly higher in suicide attempters than in healthy control subjects. Patients who performed violent suicide attempts displayed the highest IL-6. Furthermore, there was a significant positive correlation between MADRS scores and CSF IL-6 levels in all patients. IL-6 and TNF-alpha correlated significantly with 5-HIAA and HVA in CSF, but not with MHPG. Cytokine levels in plasma and CSF were not associated, and patients with increased blood-brain barrier permeability did not exhibit elevated cytokine levels.

    CONCLUSIONS: We propose a role for CSF IL-6 in the symptomatology of suicidal behavior, possibly through mechanisms involving alterations of dopamine and serotonin metabolism.

  • 125.
    Lindskov, Susanne
    et al.
    Kristianstad University, Forskningsplattformen Hälsa i samverkan. Censtralsjukhuset, Kristianstad.
    Hagell, Peter
    Lunds universitet.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Viktförändring - ett problem vid Parkinsons sjukdom2010In: I vården, ISSN 2000-4141, Vol. 1, no 4, p. 24-26Article in journal (Other academic)
  • 126.
    Lindskov, Susanne
    et al.
    Kristianstad University, School of Health and Society. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health.
    Sjoberg, Klas
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Platform for Collaboration for Health.
    Weight stability in Parkinson's disease2016In: Nutritional neuroscience, ISSN 1028-415X, E-ISSN 1476-8305, Vol. 19, no 1, p. 11-20Article in journal (Refereed)
    Abstract [en]

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

  • 127.
    Lindskov, Susanne
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap II. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, K.
    Lunds universitet.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Malnutrition risk in Parkinson's disease2014In: Journal of Aging Research & Clinical Practice, ISSN 2258-8094, Vol. 3, no 2, p. 93-99Article in journal (Refereed)
    Abstract [en]

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

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

    Design: Cross-sectional.

    Setting: South-Swedish outpatient Parkinson-clinic.

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

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

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

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

  • 128.
    Lindskov, Susanne
    et al.
    Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, Klas
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Weight loss in Parkinson´s disease?2013Conference paper (Refereed)
  • 129.
    Lindskov, Susanne
    et al.
    Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Sjöberg, Klas
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Weight loss in Parkinson´s disease?2013Conference paper (Refereed)
  • 130.
    Lindskov, Susanne
    et al.
    Department of Geriatrics and Neurology, Central Hospital Kristianstad.
    Westergren, Albert
    Research and Development Unit, Central Hospital Kristianstad.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    A controlled trial of an educational programme for people with Parkinson's disease2007In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 16, no 11C, p. 368-376Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVE: To evaluate patient-reported health outcomes of a multidisciplinary group educational programme for people with Parkinson's disease (PD), delivered as part of routine clinical practice. BACKGROUND: Studies suggest that educational programmes for people with PD have potential to improve patients' perceived health and well-being. However, controlled trials of multidisciplinary group educational programmes are lacking. DESIGN: Naturalistic non-randomized controlled trial. METHODS: Following ethical approval and informed consent, 48 people with PD (58% men; mean age, 69.3) received the intervention and 48 (52% men; mean age, 72) were allocated to a delayed intervention control group. The intervention was a six-week (two hours per week) multidisciplinary group educational programme. Patient-reported health outcomes were assessed by the 12-item short-form health survey (SF-12) at baseline and one month postintervention. RESULTS: Changes in SF-12 scores at follow-up did not differ between the groups and there were no within-group differences over time. Daily dopaminergic medication increased in the control group but not in the intervention group. CONCLUSIONS: Slightly, but significantly, increased drug requirement in the control group may in part have masked deterioration in perceived health. However, failure to demonstrate improved patient-reported health may relate to the intervention design, response shift (i.e. change in how people perceive their health), and/or quality and choice of outcome measures. Further studies that take these aspects into consideration are needed to determine the potential for patient education interventions in PD. RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals need to document the effects of patient educational programmes and to be aware of the importance of intervention design and challenges associated with evaluating programme outcomes. Otherwise, there is a risk that benefits cannot be demonstrated and that decision makers will not invest resources in interventions that actually are beneficial for chronically ill people.

  • 131.
    Lindskov, Susanne
    et al.
    Centralsjukhuset, Kristianstad.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Hagell, Peter
    Lunds universitet.
    Patientundervisning vid Parkinsons sjukdom2010In: I vården, ISSN 2000-4141, Vol. 1, no 4, p. 28-30Article in journal (Other academic)
  • 132.
    Lindvall, O
    et al.
    Lund University Hospital.
    Hagell, Peter
    Lund University Hospital.
    Cell therapy and transplantation in Parkinson's disease2001In: Clinical Chemistry and Laboratory Medicine, ISSN 1434-6621, E-ISSN 1437-4331, Vol. 39, no 4, p. 356-361Article in journal (Refereed)
    Abstract [en]

    Transplanted human fetal dopamine neurons can reinnervate the striatum in patients with Parkinson's disease (PD). Recent findings using positron emission tomography indicate that the grafts are functionally integrated and restore dopamine release in the patient's striatum. The grafts can exhibit long-term survival without immunological rejection and despite an ongoing disease process and continuous antiparkinsonian drug treatment. In the most successful cases, patients have been able to withdraw L-dopa treatment after transplantation and resume an independent life. About two-thirds of grafted patients have shown clinically useful, partial recovery of motor function. The major obstacle for the further development of this cell replacement strategy is that large amounts of human fetal mesencephalic tissue are needed for therapeutic effects. Stem cells hold promise as a virtually unlimited source of self-renewing progenitors for transplantation. The possibility to generate dopamine neurons from such cells is now being explored using different approaches. However, so far the generated neurons have survived poorly after transplantation in animals.

  • 133.
    Lindvall, O
    et al.
    Lund University Hospital.
    Hagell, Peter
    Lund University Hospital.
    Clinical observations after neural transplantation in Parkinson's disease2000In: Progress in Brain Research, ISSN 0079-6123, E-ISSN 1875-7855, Vol. 127, p. 299-320Article in journal (Refereed)
    Abstract [en]

    This chapter discusses critical analysis of the clinical findings in Parkinson's disease (PD) patients grafted with embryonic mesencephalic tissue. The emphasis is on the magnitude, pattern and time course of clinical recovery and the relation between the graft-induced symptomatic relief and the restoration of striatal dopaminergic neurotransmission. In addition, the chapter discusses some methodological issues and different strategies to improve the functional recovery following neural transplantation. The clinical observations after neural transplantation clearly documents that cell replacement has the potential to become a novel and effective therapeutic strategy for large numbers of patients with PD. However, neural transplantation currently remains an experimental approach and can only be applied to small groups of patients. The urgent problem is to develop the new sources of dopaminergic cells that are available in large amounts and suitable for transplantation in humans. It is conceivable that these cells, to give rise to maximal symptomatic relief, must exhibit several of the properties characteristic of human embryonic mesencephalic dopamine neurons, such as formation of specialized synaptic contacts with host neurons, regulated dopamine release, and functional integration into the patient's brain.

  • 134.
    Lindvall, Olle
    et al.
    Lund University Hospital.
    Hagell, Peter
    Lund University Hospital.
    Role of cell therapy in Parkinson disease2002In: Neurosurgical focus, ISSN 1092-0684, Vol. 13, no 5Article in journal (Refereed)
    Abstract [en]

    Clinical studies involving intrastriatal transplantation of embryonic mesencephalic tissue in patients with Parkinson disease (PD) have provided proof-of-principle for the cell replacement strategy in this disorder. The grafted dopaminergic neurons can reinnervate the denervated striatum, restore regulated dopamine release and movement-related frontal cortical activation, and produce significant symptomatic relief. In the most successful cases, patients have been able to withdraw from levodopa treatment after undergoing transplantation and resume an independent life. There are, however, several problems linked to the use of primary embryonic tissue: 1) lack of sufficient amounts of tissue for transplantation in a large number of patients; 2) variability of functional outcome (major improvement in some and modest if any clinical benefit in others); and 3) occurrence of troublesome dyskinesias in a significant proportion of patients after transplantation. Thus, neural transplantation is still at an experimental stage in the treatment of PD. For the development of a clinically useful cell therapy we need to define better criteria for patient selection and how graft placement should be optimized in each individual. Most importantly, we need to generate large numbers of viable dopamine neurons in preparations that are standardized and quality controlled. Stem cells could be useful as an unlimited source of dopamine neurons. Thus far, neurons with at least some dopaminergic characteristics have been generated from stem cells. In most cases, however, their survival after grafting in animals has been poor, and it is also unclear if they function as normal dopamine neurons. Several scientific issues need to be addressed before stem cell-based therapies can be tested in PD patients.

  • 135.
    Litsfeldt, Sofie
    et al.
    Kristianstad University, Faculty of Health Science.
    Ward, Teresa M
    USA.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Garmy, Pernilla
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Association between sleep duration, obesity, and school failure among adolescents2020In: Journal of School Nursing, ISSN 1059-8405, E-ISSN 1546-8364Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate the association between sleep duration, overweight/obesity, and school failure using data obtained from self-reported questionnaires completed by 13- to 15-year-olds in Sweden (n = 1,363; 50.7% female). The height and weight of the participants were measured by school nurses. A multiple logistic regression analysis was used to analyze the association between sleep duration and overweight/obesity, school failure, and perceived economic situation. A short sleep duration (<7 hr) was associated with overweight/obesity (p = .001), school failure (p = .007), and poorer perceived economic situation (p = .004). Modifying the sleep habits of adolescents is a potential target for obesity intervention as well as for improving school success. This information is particularly well suited for school nurses to disseminate to students and their parents.

  • 136.
    Ljusbäck, Ann Margreth
    et al.
    Umeå University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Sperens, Maria
    Umeå University.
    Forsgren, Lars
    Umeå University.
    Hariz, Gun-Marie
    Umeå University.
    Psychometric properties of a modified self-rating version of the ADL taxonomy for people with Parkinson´s disease2014Conference paper (Refereed)
    Abstract [en]

    Objective: To investigate the reliability and validity of a modified self-rated version of the ADL taxonomy targeting personal activities of daily living (P-ADL) for people with Parkinson’s disease (PD).

    Background: People with PD develop ADL-difficulties early on. There is a need for a reliable and valid self-administered questionnaire targeting P-ADL.

    Methods: A postal survey was sent to 282 non-demented persons with PD; 191 responded of whom 158 (mean±SD age 70±9 years, 41% women, duration of disease 6±5.5 years) answered all items of the following questionnaires: the P-ADL taxonomy, the Parkinson’s disease Activities of Daily Living Scale (PADLS), the Visual Analogue Scale of the EuroQoL-5-Dimensions Questionnaire (EQ-5DVAS), as well as demographic questions. The P-ADL taxonomy was analysed regarding corrected item-total correlations, reliability (Cronbach’s alpha) and floor/ceiling effects; Spearman’s rho (rs) was used to explore external validity relative to the PADLS and EQ-5D-VAS.

    Results: Item-total correlations were above 0.5 and Cronbach’s alpha was 0.98. Floor effect was 15% and there was no ceiling effect. The P-ADL taxonomy correlated 0.75 with the PADLS and -0.63 with the EQ-5D VAS.

    Conclusions: In this PD sample, the modified and selfadministered version of the P-ADL taxonomy showed satisfying reliability and validity; these findings suggest a promising potential for use in clinical practice and research.

  • 137.
    Løvereide, Lise
    et al.
    Norge.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Measuring life satisfaction in Parkinson's disease and healthy controls using the satisfaction with life scale2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 10, article id e0163931Article in journal (Refereed)
    Abstract [en]

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

  • 138.
    Løvereide, Lise
    et al.
    Norge.
    Larsen, Jan-Petter
    Norge.
    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.
    Measuring life satisfaction in people with Parkinson's disease and healthy controls using the satisfaction with life scale2016In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, no Suppl. 1, p. 150-Article in journal (Refereed)
  • 139.
    Masferrer, Roberto
    et al.
    Masferrer Neurosurgical, Colorado Springs.
    Prendergast, Virginia
    Barrow Neurological Institute, Phoenix.
    Hagell, Peter
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Colored pain drawings: preliminary observations in a neurosurgical practice2003In: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 7, no 3, p. 213-217Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Black and white pain drawings were introduced as a proposed means to identify patients, presenting with low back pain, who demonstrated functional overlay upon neurological testing. The use of color may enhance the usefulness of such pain drawings, but has not been described for adult patients.

    AIMS: To retrospectively explore the use of colored pain drawings in patients with neck, low back, or radicular pain.

    METHODS: Patients with neck, low back, or radicular pain referred to a community-based neurosurgical practice for evaluation during 1 year (n=359) depicted their pain on anatomical drawings using colored pencils representing different pain characteristics. Patients with abnormal (n=55) and normal (n=54) pain drawings were selected for this study. Use of medications, findings on physical examination, radiographic findings, activity levels, Waddell signs, and pending litigation were recorded and compared between patients with normal and abnormal pain drawings, as assessed according to the Ransford penalty point system.

    RESULTS: Patients whose colored pain drawings were abnormal, demonstrated a greater use of medications, more non-focal clinical findings, Waddell signs, impaired activity levels, involvement in pending litigation, and significantly fewer pathological radiographic findings than patients with normal pain drawings.

    CONCLUSIONS: Our findings agree with previous observations using black and white pain drawings, indicating that colored pain drawings are no less useful than the black and white approach. Further research is necessary to examine the psychometric properties and clinical usefulness of colored pain drawings to predict outcomes and/or determine treatment.

  • 140.
    McKenna, Stephen P.
    et al.
    Galen Research, Manchester.
    Doward, Lynda C.
    Galen Research, Manchester.
    Twiss, James
    Galen Research, Manchester.
    Hagell, Peter
    Lund University.
    Oprandi, Nadia C.
    University of Verona.
    Fisk, John
    Dalhousie University, Halifax, NS.
    Grand'Maison, François
    Université de Sherbrooke, Sherbrooke, QC.
    Bhan, Virender
    Dalhousie University, Halifax, NS.
    Arbizu, Txomin
    University of Barcelona.
    Brassat, David
    University of Toulouse.
    Kohlmann, Thomas
    Greifswald University.
    Meads, David M.
    Eckert, Benjamin J
    Novartis Pharmaceuticals, Princeton, NJ.
    International development of the patient-reported outcome indices for multiple sclerosis (PRIMUS)2010In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 13, no 8, p. 946-951Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales for assessing symptoms, activity limitations, and quality of life in multiple sclerosis (MS). It was developed in the UK and has been shown to have excellent psychometric properties. This study describes the adaptation of eight language versions for Canadian English, Canadian French, French, German, Italian, Spanish, Swedish, and US English.

    METHODS: The PRIMUS was translated using the dual-panel process. Cognitive debriefing interviews conducted with MS patients assessed face and content validity. Psychometric and scaling properties were assessed via a two-administration postal survey conducted in each country involving the PRIMUS, the Nottingham Health Profile (NHP), the Unidimensional Fatigue Impact Scale (U-FIS), and demographic questions.

    RESULTS: Cognitive debriefing interviews demonstrated the acceptability of the new language versions. Analysis of survey data showed that the new language versions of the three PRIMUS scales were unidimensional (as indicated by fit to the Rasch model) and that they had good internal consistency and reproducibility. PRIMUS scale scores correlated as expected with those on the NHP and the U-FIS. The scales in all countries were able to discriminate between groups of patients on the basis of their self-reported MS severity, general health, and employment status.

    CONCLUSIONS: The PRIMUS was successfully adapted into eight new languages. Most of the tests showed the PRIMUS to have good unidimensionality and to have good internal consistency, reproducibility, and construct validity. The measure is now available for use in clinical studies and trials involving these countries and the UK. Further work is required to assess the measure's responsiveness.

  • 141. Mehta, Shyamal H.
    et al.
    de Roos, Paul
    Uppsala universitet.
    Bloem, Bas
    Kelley, Thomas
    Angelo, Antonini
    Dodel, Richard
    Hagell, Peter
    Kristianstad University, School of Health and Society. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Martinez-Martin, Pablo
    Odin, Per
    Lund University.
    Chaudhuri, Ray
    Weintraub, Daniel
    Uitti, Ryan
    Standard set measuring patient-centred outcomes in Parkinson's disease: an international, cross-disciplinary effort2015Conference paper (Other academic)
  • 142.
    Nilsson, Maria
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Bladh, Stina
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Fatigue in Parkinson’s disease: measurement properties of a generic and a condition-specific rating scale2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 5, p. 737-746Article in journal (Refereed)
    Abstract [en]

    Context: High quality fatigue rating scales are needed to advance understanding of fatigue nd determine the efficacy of interventions. Several fatigue scales are used in Parkinson’s isease, but few have been tested using modern psychometric methodology (Rasch analysis).

    Objectives: To examine the measuring properties of the generic Functional Assessment of hronic Illness Therapy - Fatigue (FACIT-F) scale and the condition-specific 16-item arkinson Fatigue Scale (PFS-16) using Rasch analysis.

    Methods: Postal survey data (n=150; 47% women; mean age, 70) were Rasch analyzed. FS-16 scores were tested according both to the original polytomous and the suggested lternative dichotomized scoring methods.

    Results: The PFS-16 showed overall Rasch model fit whereas the FACIT-F showed signs of isfit, which probably was due to a sleepiness-related item and mixing of ositively/negatively worded items. There was no differential tem functioning by disease uration but by fatigue status (greater likelihood of needing to sleep or rest during the day mong people classified as non-fatigued) in the PFS-16 and FACIT-F. However, this did not mpact total score based estimated person measures. Targeting and reliability (≥0.86) was ood, but the dichotomized PFS-16 showed compromised measurement precision. olytomous and dichotomized PFS-16 and FACIT-F scores identified 6, 3 and 4 statistically istinct sample strata, respectively.

    Conclusion: We found general support for the measurement properties of both scales. owever, polytomous PFS-16 scores exhibited advantages compared to dichotomous PFS-16 nd FACIT-F scores. Dichotomization of item responses compromises measurement recision and ability to separate people, and should be avoided.

  • 143.
    Nilsson, Maria H.
    et al.
    Lund University.
    Drake, Anna-Maria
    Lund University.
    Hagell, Peter
    Lund University.
    Assessment of fall-related self-efficacy and activity avoidance in people with Parkinson's disease2010In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 10, article id 78Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Fear of falling (FOF) is common in Parkinson's disease (PD), and it is considered a vital aspect of comprehensive balance assessment in PD. FOF can be conceptualized differently. The Falls-Efficacy Scale (FES) assesses fall-related self-efficacy, whereas the Survey of Activities and Fear of Falling in the Elderly (SAFFE) assesses activity avoidance due to the risk of falling. This study aimed at investigating the validity and reliability of FES and SAFFE in people with PD.

    METHODS: Seventy-nine people with PD (mean age; 64 years, SD 7.2) completed the Swedish version of FES(S), SAFFE and the physical functioning (PF) scale of the 36-Item Short-Form Health Survey (SF-36). FES(S) and SAFFE were administered twice, with an 8.8 (SD 2.3) days interval. Assumptions for summing item scores into total scores were examined and score reliability (Cronbach's alpha and test-retest reliability) were calculated. Construct validity was assessed by examining the pattern of Spearman correlations (rs) between the FES(S)/SAFFE and other variables, and by examining differences in FES(S)/SAFFE scores between fallers and non-fallers, genders, and between those reporting FOF and unsteadiness while turning.

    RESULTS: For both scales, item mean scores (and standard deviations) were roughly similar and corrected item-total correlations exceeded 0.4. Reliabilities were ≥ 0.87. FES(S)-scores correlated strongest (rs, -0.74, p < 0.001) with SAFFE-scores, whereas SAFFE-scores correlated strongest with PF-scores (rs, -0.76, p < 0.001). Both scales correlated weakest with age (rs ≤ 0.08). Experiencing falls, unsteadiness while turning, and FOF was associated with lower fall-related self-efficacy and higher activity avoidance.

    CONCLUSIONS: This study provides initial support for the score reliability and validity of the FES(S) and SAFFE in people with PD.

  • 144.
    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.

  • 145.
    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.

  • 146.
    Nilsson, Maria H.
    et al.
    Lund University.
    Hariz, Gun-Marie
    Umeå University.
    Wictorin, Klas
    Skåne University Hospital, Lund.
    Miller, Michael
    Lund University.
    Forsgren, Lars
    Umeå University.
    Hagell, Peter
    Lund University.
    Development and testing of a self administered version of the Freezing of Gait Questionnaire2010In: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 10, article id 85Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Freezing of Gait Questionnaire (FOGQ) was developed in response to the difficulties of observing and quantifying freezing of gait (FOG) clinically as well as in laboratory settings. However, as the FOGQ is a clinician-administered patient-reported rating scale it cannot be used in postal surveys. Here we report the development and measurement properties of a self-administered version of the FOGQ (FOGQsa).

    METHODS: A clinical sample and a postal survey sample of non-demented people with Parkinson's disease (PD; total n = 225) completed the FOGQsa and questionnaires concerning physical functioning (PF) and fall-related self efficacy (FES). Additional questions (No/Yes) regarded previous falls and whether they were afraid of falling. The clinical sample was also assessed with the Unified PD Rating Scale (UPDRS). Thirty-five participants completed FOGQsa and were also assessed with the original version (FOGQ) in a clinical interview.

    RESULTS: There were no differences (P = 0.12) between FOGQ (median, 10; q1-q3, 2-14) and FOGQsa (median, 8; 2-14) scores. The Spearman (rs) and intra-class correlations between the two were 0.92 and 0.91 (95% CI, 0.82-0.95), respectively. For FOGQsa, corrected item-total correlations ranged between 0.68-0.89. Reliability was 0.93 (95% CI, 0.91-0.94). FOGQsa scores correlated strongest with UPDRS Item 14 (Freezing; rs, 0.76) and with FES (rs, -0.74). The weakest correlation was found with age (rs, 0.14). Fallers scored significantly (p < 0.001) higher on FOGQsa compared to non-fallers, median scores 8 (q1-q3, 4-14) versus 2 (0-7). Those expressing a fear of falling scored higher (p < 0.001) than those who did not, median scores 2 (0-7) versus 6 (2-14).

    CONCLUSIONS: The present findings indicate that the FOGQsa is as reliable and valid as the original interview administered FOGQ version. This has important clinical implications when investigating FOG in large scale studies.

  • 147.
    Nilsson, Maria H.
    et al.
    Department of Health Sciences, Lund University.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Carlsson, Gunilla
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Neurology, University Hospital, Lund.
    Uncovering indications of the international classification of functioning, disability, and health from the 39-item Parkinson's Disease Questionnaire2010In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, p. 984673-Article in journal (Refereed)
    Abstract [en]

    The 39-item Parkinson's disease questionnaire (PDQ-39) is the most widely used patient-reported rating scale in Parkinson's disease (PD). However, recent studies have questioned its validity and it is unclear what scores represent. This study explored the possibility of regrouping PDQ-39 items into scales representing the International Classification of Functioning, Disability, and Health (ICF) components of Body Functions and Structures (BF), Activities and Participation (AP), and Environmental (E) factors. An iterative process using Rasch analysis produced five new items sets, two each for the BF and AP components and one representing E. Four of these were found to represent clinically meaningful variables: Emotional Impairment (BF), Gross Motor Disability (AP), Fine Motor Disability (AP), and Socioattitudinal Environment (E) with acceptable reliability (0.73–0.96) and fit to the Rasch model (total item-trait chi-square, 8.28–33.2; P>.05). These new ICF-based scales offer a means to reanalyze PDQ-39 data from an ICF perspective and to study its health components using a widely available health status questionnaire for people with PD.

  • 148.
    Nilsson, Maria
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hariz, Gun-Marie
    Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Iwarsson, Susanne
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Walking ability is a major contributor to fear of falling in people with Parkinson’s disease: implications for rehabilitation2012In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, p. 713236-Article in journal (Refereed)
    Abstract [en]

    Although fear of falling (FOF) is common in people with Parkinson's disease (PD), there is a lack of research investigating potential predictors of FOF. This study explored the impact of motor, nonmotor, and demographic factors as well as complications of drug therapy on FOF among people with PD. Postal survey data (including the Falls Efficacy Scale, FES) from 154 nondemented people with PD were analyzed using multiple regression analyses. Five significant independent variables were identified explaining 74% of the variance in FES scores. The strongest contributing factor to FOF was walking difficulties (explaining 68%), followed by fatigue, turning hesitations, need for help in daily activities, and motor fluctuations. Exploring specific aspects of walking identified three significant variables explaining 59% of FOF: balance problems, limited ability to climb stairs, and turning hesitations. These results have implications for rehabilitation clinicians and suggest that walking ability is the primary target in order to reduce FOF. Specifically, balance, climbing stairs, and turning seem to be of particular importance.

  • 149.
    Nilsson, Maria
    et al.
    Lund University.
    Jonasson, Stina
    Lund University.
    Lindholm, Beata
    Lund University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Iwarsson, Susanne
    Lund university.
    Walking difficulties is the main contributor to fear of falling in people with Parkinson’s disease2017Conference paper (Refereed)
    Abstract [en]

    Fear of falling is more common and pronounced in people with Parkinson’s disease than in controls. We conducted a series of studies that used multivariable regression analyses to identify explanatory factors of fear of falling in people with Parkinson’s disease. Three independent samples were used. The first study (n=154) was a postal survey study that used well-established self-rating scales. The second study replicated the first one by using a clinical sample (n=104) and added unexplored motor aspects (e.g., gait speed, functional balance performance) as well as global cognition. The third clinical study (n=241) included independent variables that focused on personal (e.g. general self-efficacy) and environmental factors as well as Parkinson-related disabilities. In all three studies, walking difficulties was the strongest explanatory (60–68%) factor. The results imply that walking difficulties in daily life should be the primary target in order to reduce fear of falling in people with Parkinson’s disease.

  • 150.
    Nilsson, Maria
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Nyberg, Per
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hariz, Gun-Marie
    Department of Pharmacology and Clinical Neuroscience, Umeå University, Umeå, Sweden.
    Forsgren, Lars
    Department of Pharmacology and Clinical Neuroscience, Umeå University, Umeå, Sweden.
    Hagell, Peter
    Lunds universitet.
    Clinic versus patient association sampling of people with Parkinson’s disease2012In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 27, no Suppl. 1, p. 101-102Article in journal (Refereed)
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