Monica Hytiris1,2, Daisy Johnston3,4, Shannon Mullen3,4, Arlene Smyth3,4, Elizabeth Dougan3,4, Martina Rodie3,4, S Faisal Ahmed3,4. 1. Office for Rare Conditions, School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK. monica.hytiris@ggc.scot.nhs.uk. 2. Royal Hospital for Children, University of Glasgow, Glasgow, G51 4TF, UK. monica.hytiris@ggc.scot.nhs.uk. 3. Office for Rare Conditions, School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK. 4. Royal Hospital for Children, University of Glasgow, Glasgow, G51 4TF, UK.
Abstract
BACKGROUND: Whilst diagnostic pathways for children with rare conditions have shown marked improvement, concerns remain about the care children with rare conditions receive at the level of the health care provider. There is, therefore, a need to improve our understanding of the health care received and explore the development of benchmarks that can be regularly monitored. METHODS: Patients and parents with rare conditions at a tertiary children's hospital were approached to complete a questionnaire-based survey that enquired on their experience of clinical care. The survey explored six key themes: diagnosis; provision of information; availability of support; satisfaction with healthcare team; awareness and support for life-limiting conditions; and participation in research. RESULTS: 130 questionnaires were completed on behalf of 134 patients between 2018 and 2020. Of these, 114 (85%) had received a formal diagnosis, 5 (4%) had a suspected diagnosis and 15 (11%) were undiagnosed. Of the 114 who had received a diagnosis, 24 (20%) were diagnosed within 6 months of developing symptoms, and 22 (20%) within 1-3 years. Seventy patients (53%) reported that they were given little or no information around the time of diagnosis, whilst 81 (63%) felt they were currently well supported, mostly from family members, followed by friends, hospital services, school, other community based healthcare services and lastly, primary care. Of the 127 who were asked, 88 (69%) reported a consistent team of healthcare professionals taking overall responsibility for their care, 86 (67%) felt part of the team, 74 (58%) were satisfied with the level of knowledge of the professionals, and 86 (68%) knew who to contact regarding their condition. Of the 91 who were asked, 23 (25%) were aware their child had a life limiting condition, but only 4 (17%) were receiving specialist support for this. Of 17 who were asked about research, 4 (24%) were actively participating in research, whilst the remainder were all willing to participate in future research. CONCLUSIONS: The survey provides a unique insight into the experience of patients and parents within a specialist centre and the benchmarks that it has revealed can be used for future improvement in services.
BACKGROUND: Whilst diagnostic pathways for children with rare conditions have shown marked improvement, concerns remain about the care children with rare conditions receive at the level of the health care provider. There is, therefore, a need to improve our understanding of the health care received and explore the development of benchmarks that can be regularly monitored. METHODS:Patients and parents with rare conditions at a tertiary children's hospital were approached to complete a questionnaire-based survey that enquired on their experience of clinical care. The survey explored six key themes: diagnosis; provision of information; availability of support; satisfaction with healthcare team; awareness and support for life-limiting conditions; and participation in research. RESULTS: 130 questionnaires were completed on behalf of 134 patients between 2018 and 2020. Of these, 114 (85%) had received a formal diagnosis, 5 (4%) had a suspected diagnosis and 15 (11%) were undiagnosed. Of the 114 who had received a diagnosis, 24 (20%) were diagnosed within 6 months of developing symptoms, and 22 (20%) within 1-3 years. Seventy patients (53%) reported that they were given little or no information around the time of diagnosis, whilst 81 (63%) felt they were currently well supported, mostly from family members, followed by friends, hospital services, school, other community based healthcare services and lastly, primary care. Of the 127 who were asked, 88 (69%) reported a consistent team of healthcare professionals taking overall responsibility for their care, 86 (67%) felt part of the team, 74 (58%) were satisfied with the level of knowledge of the professionals, and 86 (68%) knew who to contact regarding their condition. Of the 91 who were asked, 23 (25%) were aware their child had a life limiting condition, but only 4 (17%) were receiving specialist support for this. Of 17 who were asked about research, 4 (24%) were actively participating in research, whilst the remainder were all willing to participate in future research. CONCLUSIONS: The survey provides a unique insight into the experience of patients and parents within a specialist centre and the benchmarks that it has revealed can be used for future improvement in services.
Authors: Caroline Sanders; Joanne Hall; Caroline Sanders; Arianne Dessens; Jillian Bryce; Nina Callens; Martine Cools; Mariam Kourime; Andreas Kyriakou; Alexander Springer; Laura Audi; Antonio Balsamo; Violeta Iotova; Vilhelm Mladenov; Maciej Krawczynski; Agneta Nordenskjöld; Marta Rozas; Hedi Claahsen-van der Grinten; Olaf Hiort; Stefan Riedl; S Faisal Ahmed Journal: Sex Dev Date: 2018-06-23 Impact factor: 1.824