Access to social services for undiagnosed rare disease patients in France: A pilot study |
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| Institution: | 1. Laboratoire d’Economie de Dijon, Université de Bourgogne Franche-Comté, France;2. Filière AnDDI-Rares – CHU d’Angers, France;3. Filière AnDDI-Rares - APHP, France;4. Filière AnDDI-Rares – CHU, Dijon, France;5. Centre de Référence Anomalies du développement et Syndromes Malformatifs, Filière AnDDI-Rares, CHU, Dijon, France;1. Hacettepe University Faculty of Medicine, Department of Child Health and Diseases, Unit of Cardiology, Ankara, Turkey;2. Ankara City Hospital, Department of Child Health and Diseases, Unit of Cardiology, Ankara, Turkey;3. Hacettepe University Faculty of Medicine, Department of Child Health and Diseases, Unit of Genetics, Ankara, Turkey;4. University of Health Sciences, Department of Pediatric Genetics, Ankara City Hospital, Ankara, Turkey;1. Diagnosis and Development, Murdoch Children''s Research Institute, Royal Children''s Hospital, Melbourne, Parkville, 3052, Australia;2. Faculty of Medicine, Dentistry and Health Sciences, Department of Paediatrics, University of Melbourne, Parkville, 3052, Australia;3. School of Psychology and Public Health, La Trobe University, Melbourne, 3083, Australia;4. Division of Genetics and Genomics, Boston Children''s Hospital, Boston, MA, USA;5. The University of Newcastle, Newcastle, NSW, Australia;6. Department of Psychiatry, Boston Children''s Hospital, Boston, MA, USA;1. Montpellier University, ERN ITHACA, Génétique Clinique, Département de Génétique Médicale, Maladies Rares et Médecine Personnalisée, Centre Hospitalier Universitaire de Montpellier, Centre de Compétence Maladies Osseuses Constitutionnelles, INSERM U1183, Montpellier, France;2. Institut Saint-Pierre, Département de Médecine Physique et Réadaptation Pédiatrique, Palavas-Les-Flots, France;3. Montpellier University, Département d’Imagerie Pédiatrique, Centre Hospitalier Universitaire de Montpellier, Montpellier, France;4. Service de Biochimie Médicale et Génétique Moléculaire, Centre Hospitalier Universitaire Gabriel Montpied, Laboratoire AURAGEN (Plan France Médecine Génomique 2025), Clermont-Ferrand, France;5. Laboratoire de Génétique Chromosomique et Moléculaire, CHU-Hôpital Nord, Laboratoire AURAGEN (Plan France Médecine Génomique 2025), Saint Étienne, France;6. Montpellier University, Département de Pédiatrie Spécialisée, Centre de Compétence Maladies Endocriniennes Rares, Centre Hospitalier Universitaire de Montpellier, Montpellier, France;1. Corporate Medical & Clinical Affairs, Abu Dhabi Health Services Company – SEHA, United Arab Emirates;2. Department of Molecular Genetics, University of Toronto, Toronto, Canada;3. Academic Affairs Department, Corniche Hospital, Abu Dhabi Health Services Company – SEHA, United Arab Emirates;4. Corniche Fertility Center, Corniche Hospital, Abu Dhabi, United Arab Emirates;5. Department of Fetal Medicine & Medical Imaging, Corniche Hospital, Abu Dhabi, United Arab Emirates;6. College of Medicine and Health Sciences, Khalifa University, Abu Dhabi, United Arab Emirates;1. Department of Pediatrics, Seoul National University College of Medicine, Seoul National University Children''s Hospital, South Korea;2. Department of Laboratory Medicine, Seoul National University College of Medicine, Seoul National University Hospital, Seoul, South Korea;3. Department of Otorhinolaryngology-Head and Neck Surgery, Seoul National University College of Medicine, Seoul National University Bundang Hospital, Seongnam, South Korea;1. Department of Laboratory Medicine, Chungbuk National University Hospital, Cheongju, Republic of Korea;2. Department of Pediatrics, Chungbuk National University Hospital, Cheongju, Republic of Korea;3. Rare Genetic Disease Research Center, 3billion Inc, Seoul, Republic of Korea;4. Department of Laboratory Medicine, Chungbuk National University, College of Medicine, Cheongju, Republic of Korea;5. Department of Pediatrics, Chungbuk National University, College of Medicine, Cheongju, Republic of Korea |
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| Abstract: | Although the challenge of access to care for undiagnosed rare disease patients is well documented in the literature, little is known about lack of diagnosis preventing access to social services. Yet this has serious consequences for patients and their families because disability associated with rare disease requires frequent and costly multi-disciplinary support.The aim of this research is to explore, in the French context, access to social assistance for rare disease patients. We investigate the link between diagnosis and access to social services to identify potential barriers and unmet needs for patients.Our study is based on a self-administered online questionnaire, adressed to parents or legal representatives of a child under ten years old with a rare disease and development disorders. The survey has been carried out between November 2019 and the end of January 2020 and includes 103 respondents.While our data does not show any differences in the possibility of obtaining a social benefit depending on the diagnosis status, there are differences in the length of time they are granted and in the satisfaction of families with the assistance obtained. Families with an undiagnosed child obtained social assistance for a shorter period on average. They were also more likely to be dissatisfied with the amount of benefit they received. The results of this pilot study need to be confirmed by further extended studies. |
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| Keywords: | Rare disease Undiagnosed Social services Unmet needs France |
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