Quality of life from childhood to adulthood: Perspectives from adult patients with pediatric-onset intestinal failure.
Marie L NeumannSwapna KakaniAmy LadnerPublished in: Journal of pediatric gastroenterology and nutrition (2024)
Adult patients with pediatric onset short bowel syndrome (SBS) or intestinal failure (IF) have been described as a distinct population warranting further research. The aim of this exploratory study aimed was to offer initial insights into this population's navigation of childhood, adolescence, and transition into adulthood. Both quantitative and qualitative data were collected from a convenience sample of adults with pediatric-onset SBS/IF using a disease-specific pilot survey; 14 questionnaires were completed. Responses indicated childhood and adulthood were complex and marked by joys and trials, while adolescence was experienced by many as a particularly challenging time. As adults, numerous patients experienced barriers to accessing the medical care they desired and described difficulties finding experienced and knowledgeable providers who listened and offered individualized care. This study highlights the importance of further studying this unique patient population, suggesting it can offer critical insights to inform the development of interventions and transition programs.
Keyphrases
- depressive symptoms
- early life
- childhood cancer
- end stage renal disease
- healthcare
- chronic kidney disease
- newly diagnosed
- systematic review
- palliative care
- public health
- high resolution
- quality improvement
- young adults
- chronic pain
- patient reported outcomes
- pain management
- artificial intelligence
- electronic health record