Quality of life, health-related quality of life, and associated factors in Huntington’s disease: a systematic review
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Published:2023-01-30
Issue:5
Volume:270
Page:2416-2437
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ISSN:0340-5354
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Container-title:Journal of Neurology
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language:en
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Short-container-title:J Neurol
Author:
van Lonkhuizen Pearl J. C.ORCID, Frank WiebkeORCID, Heemskerk Anne-Wil, van Duijn ErikORCID, de Bot Susanne T.ORCID, Mühlbäck AlzbetaORCID, Landwehrmeyer G. BernhardORCID, Chavannes Niels H.ORCID, Meijer ElineORCID, Chavannes Niels H., de Bot Susanne T., van Lonkhuizen Pearl J. C, Landwehrmeyer G. Bernhard, Steck Franziska, Klempíř Jiří, Konvalinková Romama, Bezuchová Eva, Dolečková Kristýna, Klempířová Olga, Roth Jan, Ulmanová Olga, Squitieri Ferdinando, Maffi Sabrina, Scaricamazza Eugenia, Migliore Simone, Di Giorgio Chiara, D’Alessio Barbara, Casella Melissa, Hoblyn Jennifer, Thangaramanujam Muthukumaran, Burke Tom, O’Malley Emer, McKenna Stephen, McKenna Ian, Thorpe Jeanette, Coffey Anna, Moldovan Ramona, Foley Peter, Kerr Jacqueline,
Abstract
Abstract
Background
Huntington’s disease (HD) is a genetic, neurodegenerative disease. Due to the progressive nature of HD and the absence of a cure, (health-related) quality of life ((HR)QoL) is an important topic. Several studies have investigated (HR)QoL in HD, yet a clear synthesis of the existing literature is lacking to date. We performed a systematic review on self-reported (HR)QoL, and factors and intervention effects associated with (HR)QoL in premanifest and manifest HD gene expansion carriers (pHDGECs and mHDGECs, respectively).
Methods
PubMed, EMBASE, Web of Science, and PsycINFO were searched systematically from September 17th, 2021, up to August 11th, 2022. Methodological and conceptual quality of the included studies was assessed with two appraisal tools.
Results
30 out of 70 eligible articles were included. mHDGECs experienced lower (HR)QoL compared to pHDGECs and controls, whereas mixed findings were reported when compared to other neurological diseases. Several factors were associated with (HR)QoL that might contribute to lower (HR)QoL in mHDGECs, including depressive symptoms, physical and psychological symptoms, lower functional capacity, lower support, and unmet needs. Multidisciplinary rehabilitation programs and a respiratory muscle training were beneficial for (HR)QoL in mHDGECs.
Discussion
(HR)QoL is experienced differently across the course of the disease. Although (HR)QoL is key for understanding the impact of HD and the effect of symptomatic treatment, there is a need to improve the methodological and conceptual shortcomings that were found in most studies, especially regarding the conceptual clarity when reporting on QoL and HRQoL. Suggestions for strengthening these shortcomings are provided in this review.
Publisher
Springer Science and Business Media LLC
Subject
Neurology (clinical),Neurology
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