X-linked hypophosphatemia: The value of feedback focus groups to assess patient and caregiver needs.

X-linked hypophosphatemia (XLH) is a rare, multi-systemic, invalidating disease requiring a multi-disciplinary approach. No specific action in XLH, neither for the patients' specific needs nor for the methodology for the evaluation of these were found. Thus, to identify the needs of XLH patients and their caregivers, we organised focus groups in our reference centre with a view to build educational sessions. Focus groups including either XLH children, XLH adults, or caregivers ran in parallel. Each group was led by a person trained in therapeutic education (nurse, paediatric nephrologist) with another healthcare provider specialised in XLH (rheumatologist, nephrologist). One additional person with knowledge of XLH (clinical research associate, paediatric resident) took minutes. The duration of each session was 1.5h; XLH patients/caregivers were asked to answer age-adapted "open questions" on their daily life and quality of life. At the end, a global restitution was made. The needs identified were later grouped and analysed, which allowed us to build the educational sessions. The XLH children group included 5 children, the XLH adults group included 10 adults, and the caregivers group included 6 parents or partners. Major needs were identified: knowledge of XLH, treatment, dental care and adapted physical activity, with additional questions on socio-professional adaptations and financial support in adults. Partner patients were also identified to co-build the support programme. The study allowed us to identify the needs of XLH patients and their caregivers using the focus group method and then, using these needs, to build educational sessions and a therapeutic education programme for XLH patients.

[« Forum Passerelle ¼: an opportunity for caregivers to meet the professionals of service and support in Alzheimer's disease and related diseases.] / « Forum Passerelle ¼ : une opportunité pour les proches aidants de rencontrer les professionnels des dispositifs d'aide et d'accompagnement dans le cadre de la maladie d'Alzheimer et maladies apparentées.

The aim of this study was to assess 1) the satisfaction of caregivers of patients with Alzheimer's disease or related diseases regarding a new collective support intervention called "Forum Passerelle"(Gateway forum), and 2) to assess the impact of "Forum Passerelle" on the implementation of services and support for patients or caregivers. This is an observational study carried out on the basis of 3 "Forum Passerelle" (between October 2018 and February 2020). Following each "Forum Passerelle", the caregivers' satisfaction was assessed and the number of services and support was counted. In total, 78 caregivers took part in these first "Forum passerelle". The satisfaction survey showed that 98% of caregivers were satisfied with the topics covered by "Forum Passerelle". The forum fully met the expectations of 61% of caregivers and partially for 39%. Among the caregivers contacted 3 or 6 months after the forum, 68% had set up a new service/support (85 new services/support for the sick relatives and 32 for caregivers) and 59% declared that these changes had taken place thanks to the "Forum Passerelle". To conclude, the first 3 "Forums Passerelle" were received very favorably by caregivers and contributed to the implementation of new services to optimize home support for the sick relative.