Model of Care for Transition from Paediatric to Adult Healthcare Providers in Rare Diseases
| dc.contributor.author | National Clinical Programme for Rare Diseases | |
| dc.date.accessioned | 2019-11-13T12:40:10Z | |
| dc.date.available | 2019-11-13T12:40:10Z | |
| dc.date.issued | 2018-07 | |
| dc.identifier.uri | http://hdl.handle.net/10147/626908 | |
| dc.description | For rare diseases in Ireland, collaboration across various healthcare settings is key given the nature of national services and expertise. This requires system-level solutions which address the alignment of providers in multiple settings, with facilitated communication, record sharing, capacity building and related audit and clinical research nationally. A rare disease is defined in the EU as a disease or disorder affecting fewer than 5 in 10,000 of the European population. There are an estimated 6-8,000 known rare diseases affecting up to 8% of the total EU population, representing up to 300,000 Irish people during their lives. Estimates suggest that around 50-75% of all rare diseases affect children. Recognising the vulnerable situation in which adolescents with rare diseases are often placed at the point in their healthcare where they need to transfer from paediatric to adult healthcare providers, a working group was established from the National Clinical Programme for Rare Diseases to develop a model of care for such individuals. In this process it was established that transition in any condition, either a common chronic illness or an extremely rare condition, must be carried out in a planned, phased approach, which leads ultimately to seamless transfer of care as is appropriate to the patient’s healthcare needs and developmental stage. In the future it is hoped that by developing centres of expertise where there can be concentration of expertise and resources, that patients with specific rare diseases can be managed in a more holistic pathway avoiding potential gaps in care or expertise, loss of access to allied healthcare services previously available to the individual, and loss to follow up during the transition phases. Many challenges in transition are not unique to rare diseases, but certain aspects of a rare disease can bring extra hurdles which can be offset to a degree by involving the patient in the decision on where to refer on to adult care. For this reason it is particularly important that the patient with a rare disease is part of their care pathway from early adolescence such that self-advocacy, independent health care behaviour, and sexual health are addressed. Furthermore, patients with rare diseases should be offered psychosocial support which may include access to genetic counselling, advice on education and vocational planning, and general promotion of a healthy lifestyle. The transfer of information to the adult healthcare provider in a timely fashion is vital in the transition process. The transition pathway in rare diseases needs to recognise and incorporate the intellectual or physical issues facing the patient, and ensure that carers involved are also part of the process. In conditions where multiple systems are involved, it should be agreed in advance which physician involved in the care will be taking a lead in the management of the patient, and this physician should be appropriately resourced, where possible to allow a multi-disciplinary team approach to care. | en_US |
| dc.language.iso | en | en_US |
| dc.publisher | Health Service Executive (HSE) | en_US |
| dc.relation.ispartofseries | National Clinical Programmes | en_US |
| dc.subject | RARE DISEASE | en_US |
| dc.subject | CLINICAL GUIDELINES | en_US |
| dc.subject | CHILD HEALTH | en_US |
| dc.subject | CHILDREN | en_US |
| dc.title | Model of Care for Transition from Paediatric to Adult Healthcare Providers in Rare Diseases | en_US |
| dc.type | Guideline | en_US |
| dc.contributor.department | Health Service Executive; Royal College of Physicians of Ireland | en_US |
| refterms.dateFOA | 2019-11-13T12:40:11Z |
