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Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome.
Gocheva, Vanya; Hafner, Patricia; Orsini, Anna-Lena; Schmidt, Simone; Schaedelin, Sabine; Rueedi, Nicole; Rubino-Nacht, Daniela; Weber, Peter; Fischer, Dirk.
Afiliação
  • Gocheva V; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland. vanya.gocheva@ukbb.ch.
  • Hafner P; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
  • Orsini AL; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
  • Schmidt S; Division of Neurology, University Hospital Basel, Basel, Switzerland.
  • Schaedelin S; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
  • Rueedi N; Department of Neurology, General Hospital Hietzing with Neurological Center Rosenhügel, Vienna, Austria.
  • Rubino-Nacht D; Department of Clinical Research, Clinical Trial Unit, University Hospital Basel, Basel, Switzerland.
  • Weber P; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
  • Fischer D; Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
J Patient Rep Outcomes ; 4(1): 59, 2020 Jul 16.
Article em En | MEDLINE | ID: mdl-32676980
ABSTRACT

BACKGROUND:

The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-reported outcome measures (PROMs) are associated with objectively assessed physical function in patients with PPS.

AIM:

To investigate health-related quality of life (HRQOL), self-reported impairments and activities of daily living during 6 months and evaluate their association with clinical muscle function outcomes in individuals with PPS.

METHODS:

Twenty-seven patients with PPS were included in the study. At baseline and 6 months, patients were administered PROMs measuring HRQOL (WHOQOL-BREF), self-reported impairments related to PPS (SIPP-RS) and activities of daily living (IBM-FRS). Clinical muscle function outcomes included 6 min walking distance (6MWD) and motor function measure (MFM).

RESULTS:

There were no changes in self-reported impairments (25.52 to 24.93, p = 0.40), activities of daily living (33.89 to 33.30, p = 0.20), 6MWD (391.52 to 401.85, p = 0.30) and MFM (83.87 to 85.46, p = 0.14) during 6 months, while the HRQOL psychological health decreased during this period (76.85 to 72.38, p = 0.05). A strong association was found between activities of daily living and clinical muscle function outcomes (6MWD ß = 0.02, 95% CI 0.02;0.03, t = 6.88, p < 0.01; MFM ß = 0.25, 95% CI 0.17;0.33, t = 6.69, p < 0.01). Self-reported impairments and HRQOL domains were not associated with the clinical muscle outcomes.

CONCLUSIONS:

Study findings indicate that objectively measured walking and motor abilities do not reflect patient's perspectives of their HRQOL and impairment due to PPS. More research is needed to assess changes over time and capture clinically meaningful changes in individuals with PPS and to increase the understanding of how the patient's perspective of disability measured by PROMs is related to objectively measured walking and motor abilities. TRIAL REGISTRATION ClinicalTrials.gov Identifier ( NCT02801071 ) registered June 15, 2016.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Prognostic_studies Aspecto: Patient_preference Idioma: En Revista: J Patient Rep Outcomes Ano de publicação: 2020 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Prognostic_studies Aspecto: Patient_preference Idioma: En Revista: J Patient Rep Outcomes Ano de publicação: 2020 Tipo de documento: Article