Revue des maladies respiratoires · 2025
[Social care for adult cystic fibrosis patients in clinical practice].
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Dury S, Mulette P, Vivien A, Yucel-Farcet H, Longueville E, Boutahir A, Ravoninjatovo B, Deforge A, Griffon M, Deschamps F, Deslée G, Ancel J
Аннотация
INTRODUCTION: The complications associated with cystic fibrosis and the daily management of the disease can have significant social, familial, and professional repercussions. The objective of this study was to assess adult patients' knowledge regarding their rights and social support options, along with their access to social care.
MATERIALS AND METHODS: Between May 2021 and December 2023, we conducted a prospective monocentric study at the University Hospital of Reims, including adult patients diagnosed with cystic fibrosis. A questionnaire assessing their knowledge in this area was utilized.
RESULTS: The analysis included 61 patients (64% male; mean age: 29.2 years). In 73% of cases, patients reported being assisted by their social circle in managing administrative tasks. Information sources were diverse, and most patients had already met with a social worker. While the quality of information received was generally rated as good, one-third of the participants felt that the topic of social support was insufficiently addressed. Ten patients were unaware of their being enrolled in the long-term illness coverage program. Half of patients were receiving adult disability benefits.
CONCLUSION: Adult patients often rely on their social support network for the performance of administrative and social tasks. Improved information on social benefits and the organization of specifically targeted workshops are desired by patients.
MATERIALS AND METHODS: Between May 2021 and December 2023, we conducted a prospective monocentric study at the University Hospital of Reims, including adult patients diagnosed with cystic fibrosis. A questionnaire assessing their knowledge in this area was utilized.
RESULTS: The analysis included 61 patients (64% male; mean age: 29.2 years). In 73% of cases, patients reported being assisted by their social circle in managing administrative tasks. Information sources were diverse, and most patients had already met with a social worker. While the quality of information received was generally rated as good, one-third of the participants felt that the topic of social support was insufficiently addressed. Ten patients were unaware of their being enrolled in the long-term illness coverage program. Half of patients were receiving adult disability benefits.
CONCLUSION: Adult patients often rely on their social support network for the performance of administrative and social tasks. Improved information on social benefits and the organization of specifically targeted workshops are desired by patients.