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  • 1.
    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.

  • 2.
    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.

  • 3.
    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.

  • 4.
    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.

  • 5.
    Rosqvist, Kristina
    et al.
    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.
    Nilsson, Maria H
    Lund University.
    Odin, Per
    Lund University.
    Satisfaction with care in late stage Parkinson’s disease2019In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, Vol. 2019Article in journal (Refereed)
    Abstract [en]

    In late stage Parkinson’s disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers’ satisfaction with support and to identify factors associated with caregivers’ satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers () and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; ), less depressive symptoms (Geriatric Depression Scale, GDS-30; ), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; ). Multivariable logistic regression analyses identified depressive symptoms () and independence in ADL () as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients’ HY stage () and caregivers’ QoL (Alzheimer’s Carers Quality of Life Inventory, ACQLI; ) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

  • 6.
    Sjödahl Hammarlund, Catharina
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Lund University.
    Westergren, Albert
    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.
    Åström, Ingrid
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Edberg, Anna-Karin
    Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    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 Impact of Living with Parkinson’s Disease: Balancing within a Web of Needs and Demands2018In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, Vol. 2018, article id 4598651Article in journal (Refereed)
    Abstract [en]

    This study explores the impact of living with Parkinson’s disease (PD). Nineteen persons (11 women) aged 55–84 diagnosed with PD 3–27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: “Changed prerequisites for managing day-to-day demands,” “Loss of identity and dignity,” “Compromised social participation,” and “The use of practical and psychological strategies.” There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.

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