BACKGROUND: Survival for patients with intestinal failure (IF) has improved significantly, resulting in a growing number of patients with childhood‐ onset IF entering adulthood. Because of this trend, there is now great interest in the development of a model for successfully transitioning IF patients from pediatric to adult care. Patients and families contribute invaluable insights and perspectives that can inform the development of a healthcare transition model for this population.
METHODS: A mixed‐methods disease‐specific pilot survey was designed collaboratively by SBS/IF community members and clinicians to investigate quality of life concerns for this population. The survey was shared with a convenience sample of adult patients with pediatric‐onset SBS/IF and parents of children with SBS/IF. Descriptive analyses of select open‐ and closed‐ ended questions were conducted to investigate adult patient and parent utilization of medical care, satisfaction with the medical care received, and perspectives on desired qualities of care.
RESULTS: Twenty‐five parents of children with IF and 13 adult patients with IF since childhood completed the survey. Eleven of the 25 parent respondents (44%) reported having transferred their child's medical care to a different institution, almost exclusively to access what they perceived as better or more specialized care (n=10). Parents who had transferred their child's care reported high satisfaction with the care their child was receiving much more frequently than those who did not (91% compared to 14% respectively). In contrast, eight adult patients (62%) reported having previously transferred their medical care to a different provider/institution, generally due to “aging out” of pediatric care (n=7). One adult patient remained in the pediatric system at the time of this survey, one was uninsured and no longer receiving any care, and three reported not receiving specialized GI care over long periods of time. Of the adult patients having transferred care, only half were highly satisfied with the care they were currently receiving. Reflecting on desired characteristics of their medical team, adult patients tended to value provider recognition of their expertise as patients (n=7) and the utilization of a knowledgeable but nuanced approach to care (recognizing the uniqueness of each IF case) that helps them live their desired lifestyle (n=7). Parent respondents most frequently highlighted a family‐centered team approach that recognized parent expertise (n=16), the provision of whole‐person, multidisciplinary care (n=9), and ease of access and responsiveness on the part of the provider or team (n=8).
CONCLUSION: While many families transition into specialized care to ensure optimized treatment for their child, young adult patients often transition out of this specialized, multidisciplinary care. These patients may experience barriers to accessing the care they desire, including finding knowledgeable providers experienced with adult IF patients and establishing a provider‐patient relationship built on mutual trust. Better understanding the needs of adult patients with IF since childhood may help to inform the development of a transition model for this population.
