Disability and rehabilitation · 2025
Psychosocial aspects, chronic pain, fatigue and quality of life in individuals with Stickler syndrome: a scoping review and a cross-sectional questionnaire study.
СтатьяScoping ReviewНазвание и аннотация: Перевод в очереди
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Velvin Gry, Youssefian Blakstvedt Taran, Olsson Heidi, Langøy Marit, Möller-Omrani Christine, Svendal Sturle, Austeng Marit Erna
Аннотация
PURPOSE: Stickler syndrome is a rare, hereditary connective tissue disorder characterized by visual, auditory, and musculoskeletal complications. Research on quality of life remains limited. This study aimed to: (i) explore existing literature on psychosocial aspects, pain, fatigue, and quality of life in individuals with Stickler syndrome, (ii) describe the impact of health complaints on daily living, contacts with healthcare- and social service systems and quality of life in a cohort of adults with Stickler syndrome.
METHODS: A combination of a systematic scoping review and a cross-sectional questionnaire study was utilized. The questionnaire included questions on demographics and health complaints, and several validated instruments: PROMIS-57, Satisfaction with Life Scale and LiSat-11. Only patients with a verified diagnosis were included.
RESULTS: Of 43 articles read, five studies were included. Four addressed pain and one examined quality of life in children. Chronic pain was a prevalent finding, impacting daily functioning and quality of life. In the questionnaire (n = 24), 92% reported chronic pain, along with fatigue, anxiety symptoms, and reduced quality of life. Still, participants reported education, employment, and family life.
CONCLUSION: Individuals with Stickler syndrome experience health challenges affecting various aspects of life. Further studies are needed to develop evidence-based practice for this group.
METHODS: A combination of a systematic scoping review and a cross-sectional questionnaire study was utilized. The questionnaire included questions on demographics and health complaints, and several validated instruments: PROMIS-57, Satisfaction with Life Scale and LiSat-11. Only patients with a verified diagnosis were included.
RESULTS: Of 43 articles read, five studies were included. Four addressed pain and one examined quality of life in children. Chronic pain was a prevalent finding, impacting daily functioning and quality of life. In the questionnaire (n = 24), 92% reported chronic pain, along with fatigue, anxiety symptoms, and reduced quality of life. Still, participants reported education, employment, and family life.
CONCLUSION: Individuals with Stickler syndrome experience health challenges affecting various aspects of life. Further studies are needed to develop evidence-based practice for this group.