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  • 1.
    Friedman, Joseph H.
    et al.
    NeuroHealth, Parkinson's Disease and Movement Disorders Center, Warwick, Rhode Island.
    Alves, Guido
    The Norwegian Centre for Movement Disorders, Stavanger University Hospital.
    Hagell, Peter
    Department of Neurology, Lund University Hospital.
    Marinus, Johan
    Department of Neurology, Leiden University Medical Center, Leiden.
    Marsh, Laura
    Department of Psychiatry Johns Hopkins Hospital, Baltimore, Maryland.
    Martinez-Martin, Pablo
    Area of Applied Epidemiology, Center for Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid.
    Goetz, Christopher G.
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Poewe, Werner
    Department of Neurology, Innsbruck Medical University.
    Rascol, Olivier
    Clinical Investigation Center INSERM CIC-9302 and Departments of Clinical Pharmacology and Neurosciences, CHU and University UPS of Toulouse.
    Sampaio, Cristina
    Laboratório de Farmacologia Clínica e Terapêutica e Instituto de Medicina Molecular, Faculdade de Medicina de Lisboa.
    Stebbins, Glenn
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Schrag, Anette
    Department of Clinical Neurosciences, Institute of Neurology, University College London.
    Fatigue rating scales critique and recommendations by the Movement Disorders Society task force on rating scales for Parkinson's disease2010In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 25, no 7, p. 805-822Article in journal (Refereed)
    Abstract [en]

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

  • 2.
    Hagell, Peter
    et al.
    Lund University.
    Crabb, L
    USA.
    Pogarell, O
    Schrag, A
    England.
    Widner, H
    Region Skåne.
    Brooks, D J
    England.
    Oertel, W H
    Quinn, N P
    Lindvall, O
    Lund University.
    Health-related quality of life following bilateral intrastriatal transplantation in Parkinson's disease2000In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 15, no 2Article in journal (Refereed)
    Abstract [en]

    Intrastriatal transplantation of embryonic dopaminergic tissue is a new, experimental approach for the treatment of Parkinson's disease (PD). Clinical trials have shown longterm graft survival and therapeutically valuable improvements with decreased L-dopa dose and time spent in the "off"-phase, and reduced rigidity and hypokinesia. We have measured health-related quality of life (HRQoL) using the Nottingham Health Profile (NHP) in five patients subjected to bilateral transplantation in the caudate and putamen to explore the influence of intrastriatal grafts on HRQoL and the value of such measures in trials of restorative therapies. The results demonstrate improved HRQoL following transplantation, with individual patients showing striking improvements within different dimensions of the NHP as well as the NHP distress index (NHPD). The most pronounced improvements after grafting were observed for physical mobility along with emotional reactions and energy. These results indicate that intrastriatal transplantation of embryonic dopaminergic tissue can give rise to improvements within most areas of HRQoL, and that HRQoL measurements provide important information additional to that obtained by traditional, symptom-oriented assessment protocols. However, the optimal approach to HRQoL measurement in PD remains to be determined.

  • 3.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Nordling, Sara
    Swedish Institute for Health Economics.
    Reimer, Jan
    Lund University Hospital.
    Grabowski, Martin
    Lund University Hospital.
    Persson, Ulf
    Swedish Institute for Health Economics.
    Resource use and costs in a Swedish cohort of patients with Parkinson's disease2002In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 17, no 6, p. 1213-1220Article in journal (Refereed)
    Abstract [en]

    We estimated resource use and costs in patients with Parkinson's disease (PD), thereby providing baseline data for future economic evaluations of therapeutic interventions. Data were collected from medical records of a South Swedish cohort of 127 PD patients during 1 year (1996) and a mailed questionnaire inquiring about cost-related consequences and resource use in 1996 and in 2000. Annual costs were calculated based on prevalence and expressed in SEK (monetary value of the year 2000). Direct health care costs averaged approximately SEK 29,000 ( approximately USD 2,900; EUR 3,200) per patient per year, of which drugs were the most costly component. Nonmedical direct costs were higher than direct health care costs, averaging approximately SEK 43,000 ( approximately USD 4,300; EUR 4,800) per patient per year, and costs due to lost production were approximately SEK 52,000 ( approximately USD 5,200; EUR 5,800) per patient per year. The mean total annual cost for PD in our sample approximated SEK 124,000 ( approximately USD 12,400; EUR 13,800) per patient. These findings are roughly within the same range as estimates from other countries and show that PD causes a considerable societal burden. In addition to other outcomes, evaluations of the economic implications of new therapeutic interventions are highly warranted. In this perspective, the present study provides valuable baseline data.

  • 4.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Odin, P
    Tyskland.
    Vinge, E
    Lund University Hospital.
    Pregnancy in Parkinson's disease: a review of the literature and a case report1998In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 13, no 1, p. 34-38Article in journal (Refereed)
    Abstract [en]

    Pregnancy is rare in Parkinson's disease (PD). In the literature on studies of antiparkinsonian drugs in animals during pregnancy, there are reports on malformations of the skeletal and circulatory system. However, the majority of studies in animals have not shown any teratogenicity. Amantadine has been teratogenic in rats and selegiline has caused neurochemical and behavioral alterations in rats when coadministered with clorgyline. The published experience with humans consists of 35 pregnancies among 26 women suffering from PD, including this report, and a number of cases treated with antiparkinsonian agents for other reasons. With the exception of the majority of the cases where amantadine was used, complications have been rare. However, there are indications that suggest a possible risk of a woman's parkinsonism worsening in connection with pregnancy. We also report the case of a woman with PD who was treated with L-dopa-benserazide during an uncomplicated pregnancy and gave birth to a healthy boy without experiencing any worsening of her PD.

  • 5.
    Hagell, Peter
    et al.
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Whalley, Diane
    Galen Research, Manchester.
    McKenna, Stephen P
    Galen Research, Manchester.
    Lindvall, Olle
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Health status measurement in Parkinson's disease: validity of the PDQ-39 and Nottingham Health Profile2003In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 18, no 7, p. 773-783Article in journal (Refereed)
    Abstract [en]

    We assessed the feasibility and psychometric properties of two commonly used health status questionnaires in Parkinson's disease (PD): the generic Nottingham Health Profile (NHP) and the disease-specific 39-item Parkinson's disease Questionnaire (PDQ-39), from a cross-sectional postal survey of PD patients (N = 81), using traditional and Rasch measurement methodologies. Overall response rate was 88%. Both questionnaires were found feasible, although the NHP performed less well. The PDQ-39 had fewer floor effects and was better able to separate respondents into distinct groups than the NHP, whereas the latter exhibited less ambiguous dimensionality and better targeting of respondents with non-extreme scores. Reliability and validity indices were similar, and potential differential item functioning by age and gender groups was found for both questionnaires. PDQ-39 response alternatives indicated ambiguity. With few exceptions, questionnaire scales were unable to meet recommended standards fully. While preliminary, this study illustrates the need for thorough evaluation of outcome measures and has implications beyond the questionnaires used here. Although promising, both questionnaires warrant further developmental work and stronger support of measurement validity before they could be considered fully suitable for valid use in PD, in particular in earlier stages of the disease.

  • 6.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Widner, Håkan
    Lund University Hospital.
    Clinical rating of dyskinesias in Parkinson's disease: use and reliability of a new rating scale1999In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 14, no 3, p. 448-455Article in journal (Refereed)
    Abstract [en]

    Drug-induced dyskinesias (DID) manifested as hyperkinetic and/or dystonic movements or postures are common problems in Parkinson's disease (PD). Novel therapeutic interventions may offer possibilities to counteract these common adverse effects of an otherwise necessary treatment. To be able to evaluate the effects of such interventions on DID, reliable and relevant clinical assessment tools are needed. We tested the inter- and intrarater reliability of a new clinical dyskinesia rating scale consisting of separate ratings of different body parts, including lateralization and separate ratings of dystonia and hyperkinesias. Interrater reliability was tested both with and without a defined scoring code and clarification of the dystonia section. The nondefined version was also tested for intrarater reliability. Thirteen raters independently reviewed 23 videotape sequences showing PD patients performing standardized motor tests. Inter- and intrarater agreement was significant in all evaluations, and no differences were detected when comparing ratings performed with the defined and nondefined version of the scale. The rationale for, and the role and use of, the present scale are addressed.

  • 7.
    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)
1 - 7 of 7
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