Aims Medical advances mean that more children with serious illnesses are surviving into adulthood. Recent legislation and guidelines stress the importance of delivering improved joined-up services for children undergoing transition to adult services.1,2 A qualitative study was performed to explore the experiences of patients receiving long-term ventilation (LTV).
Methods Questionnaire-based telephone interviews were conducted with 21 patients (14 males, median age 26 years, range 14–57) on LTV or their carers. All had previously been within children’s services and were now under adult respiratory care at a UK teaching hospital. The underlying causes for LTV included: Duchenne muscular dystrophy (9), other muscular dystrophies (6), congenital central hypoventilation syndrome (4) and other (2).
Results Thematic analysis of the data identified 3 main themes:
Variability: the age at which transition occurred varied (17–25), as did the option to attend combined clinics, which was only given to 3 of the 21 patients. There were discrepancies in the provision of community services, which was described as being “post-code dependent”.
Unfamiliarity: patients expressed concerns about the unfamiliarity of adult doctors with their background and condition, which was often interpreted as insensitivity or lack of knowledge. They expressed frustration at having to repeat their story to numerous health care professionals.
Separation of services: care under children’s services was reported as being more holistic when compared with the single organ approach in adult services. However, the thoroughness of adult physicians in patient management was appreciated.
Conclusion Our study highlights the gap that needs to be bridged between children and adult services for patients on LTV. Early transition planning should occur to alleviate the unfamiliarity commonly experienced. This should include information about adult care and the differences in service provision. The utilisation of health care passports can do much to avoid physician unfamiliarity with the patient’s situation. These changes need to be uniformly adopted in order to improve patient satisfaction, care and long term outcome.
Care Act 2014
Care Quality Commission. From the pond into the sea: Children’s transition to adult healthcare services. June 2014
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