Health-related quality of life in patients with progressive supranuclear palsy.
Identifieur interne : 003765 ( PubMed/Checkpoint ); précédent : 003764; suivant : 003766Health-related quality of life in patients with progressive supranuclear palsy.
Auteurs : Anette Schrag [Royaume-Uni] ; Caroline Selai ; Jennifer Davis ; Andrew J. Lees ; Marjan Jahanshahi ; Niall QuinnSource :
- Movement disorders : official journal of the Movement Disorder Society [ 0885-3185 ] ; 2003.
English descriptors
- KwdEn :
- Aged, Cognition Disorders (diagnosis), Cognition Disorders (etiology), Demography, Depressive Disorder, Major (diagnosis), Depressive Disorder, Major (etiology), Female, Frontal Lobe (physiopathology), Health Status, Humans, Male, Neuropsychological Tests, Quality of Life, Questionnaires, Supranuclear Palsy, Progressive (complications), Supranuclear Palsy, Progressive (diagnosis), Supranuclear Palsy, Progressive (physiopathology).
- MESH :
- complications : Supranuclear Palsy, Progressive.
- diagnosis : Cognition Disorders, Depressive Disorder, Major, Supranuclear Palsy, Progressive.
- etiology : Cognition Disorders, Depressive Disorder, Major.
- physiopathology : Frontal Lobe, Supranuclear Palsy, Progressive.
- Aged, Demography, Female, Health Status, Humans, Male, Neuropsychological Tests, Quality of Life, Questionnaires.
Abstract
We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease-specific QoL instruments for patients with PSP.
DOI: 10.1002/mds.10583
PubMed: 14673883
Affiliations:
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Lees</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Quinn, Niall" sort="Quinn, Niall" uniqKey="Quinn N" first="Niall" last="Quinn">Niall Quinn</name></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2003">2003</date><idno type="RBID">pubmed:14673883</idno><idno type="pmid">14673883</idno><idno type="doi">10.1002/mds.10583</idno><idno type="wicri:Area/PubMed/Corpus">003605</idno><idno type="wicri:Area/PubMed/Curation">003605</idno><idno type="wicri:Area/PubMed/Checkpoint">003765</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Health-related quality of life in patients with progressive supranuclear palsy.</title><author><name sortKey="Schrag, Anette" sort="Schrag, Anette" uniqKey="Schrag A" first="Anette" last="Schrag">Anette Schrag</name><affiliation wicri:level="3"><nlm:affiliation>Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, London, United Kingdom. a.schrag@ion.ucl.ac.uk</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Selai, Caroline" sort="Selai, Caroline" uniqKey="Selai C" first="Caroline" last="Selai">Caroline Selai</name></author><author><name sortKey="Davis, Jennifer" sort="Davis, Jennifer" uniqKey="Davis J" first="Jennifer" last="Davis">Jennifer Davis</name></author><author><name sortKey="Lees, Andrew J" sort="Lees, Andrew J" uniqKey="Lees A" first="Andrew J" last="Lees">Andrew J. Lees</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Quinn, Niall" sort="Quinn, Niall" uniqKey="Quinn N" first="Niall" last="Quinn">Niall Quinn</name></author></analytic><series><title level="j">Movement disorders : official journal of the Movement Disorder Society</title><idno type="ISSN">0885-3185</idno><imprint><date when="2003" type="published">2003</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aged</term><term>Cognition Disorders (diagnosis)</term><term>Cognition Disorders (etiology)</term><term>Demography</term><term>Depressive Disorder, Major (diagnosis)</term><term>Depressive Disorder, Major (etiology)</term><term>Female</term><term>Frontal Lobe (physiopathology)</term><term>Health Status</term><term>Humans</term><term>Male</term><term>Neuropsychological Tests</term><term>Quality of Life</term><term>Questionnaires</term><term>Supranuclear Palsy, Progressive (complications)</term><term>Supranuclear Palsy, Progressive (diagnosis)</term><term>Supranuclear Palsy, Progressive (physiopathology)</term></keywords><keywords scheme="MESH" qualifier="complications" xml:lang="en"><term>Supranuclear Palsy, Progressive</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Cognition Disorders</term><term>Depressive Disorder, Major</term><term>Supranuclear Palsy, Progressive</term></keywords><keywords scheme="MESH" qualifier="etiology" xml:lang="en"><term>Cognition Disorders</term><term>Depressive Disorder, Major</term></keywords><keywords scheme="MESH" qualifier="physiopathology" xml:lang="en"><term>Frontal Lobe</term><term>Supranuclear Palsy, Progressive</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Aged</term><term>Demography</term><term>Female</term><term>Health Status</term><term>Humans</term><term>Male</term><term>Neuropsychological Tests</term><term>Quality of Life</term><term>Questionnaires</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease-specific QoL instruments for patients with PSP.</div></front></TEI><pubmed><MedlineCitation Owner="NLM" Status="MEDLINE"><PMID Version="1">14673883</PMID><DateCreated><Year>2003</Year><Month>12</Month><Day>15</Day></DateCreated><DateCompleted><Year>2004</Year><Month>04</Month><Day>28</Day></DateCompleted><DateRevised><Year>2006</Year><Month>11</Month><Day>15</Day></DateRevised><Article PubModel="Print"><Journal><ISSN IssnType="Print">0885-3185</ISSN><JournalIssue CitedMedium="Print"><Volume>18</Volume><Issue>12</Issue><PubDate><Year>2003</Year><Month>Dec</Month></PubDate></JournalIssue><Title>Movement disorders : official journal of the Movement Disorder Society</Title><ISOAbbreviation>Mov. Disord.</ISOAbbreviation></Journal><ArticleTitle>Health-related quality of life in patients with progressive supranuclear palsy.</ArticleTitle><Pagination><MedlinePgn>1464-9</MedlinePgn></Pagination><Abstract><AbstractText>We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. 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Lees</name><name sortKey="Quinn, Niall" sort="Quinn, Niall" uniqKey="Quinn N" first="Niall" last="Quinn">Niall Quinn</name><name sortKey="Selai, Caroline" sort="Selai, Caroline" uniqKey="Selai C" first="Caroline" last="Selai">Caroline Selai</name></noCountry><country name="Royaume-Uni"><region name="Angleterre"><name sortKey="Schrag, Anette" sort="Schrag, Anette" uniqKey="Schrag A" first="Anette" last="Schrag">Anette Schrag</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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