The Needs of Adolescents and Young Adults with Chronic Illness: Results of a Quality Improvement Survey

Abstract

Adolescent and young adults (AYAs) with chronic illnesses cope with complex issues that require unique psychological support and healthcare services to reduce psychosocial difficulties, improve disease management, and facilitate positive transitions to adult care. Engaging patients and caregivers can help providers understand the specific needs of this population and identify the perceived areas of support. The purpose of this quality improvement initiative is to assess the needs of AYAs with chronic medical conditions at a large government research hospital. Eighty-nine AYA patients (age = 23.5 years; range 13–34) with neurofibromatosis type 1, cancer, primary immunodeficiencies, or sickle cell disease, and a sample of caregivers (n = 37, age = 52 years; range: 41–65), completed an anonymized survey that assessed their preferences for a wide range of informational and service-related needs. The results indicate an overwhelming desire for information about general health and wellbeing and disease-specific medical knowledge. The most endorsed item was the need for more information about an individual’s medical condition (72%), which was a primary concern across disease, racial, and gender groups. Demographic and disease-specific needs were also identified. Thus, providing information to AYA patients and caregivers is a critical and largely unmet component of care, which requires the development and implementation of targeted educational and psychosocial interventions.

Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience

“…During the transition from paediatric to adult healthcare, YAs face health barriers such as fragmented communication between paediatric and adult providers, they experience poorly coordinated care, and they lack the knowledge required to properly manage their health conditions 68–70. Recommendations put forth by YAs in this review highlight the need for services that are continuous in nature; patient-centred; and are supported by family, peers, and clinicians.…”

“…During the transition from to adult healthcare, YAs face health barriers such as fragmented communication between paediatric and adult providers, they experience poorly coordinated care, and they lack the knowledge required to properly manage their health conditions. [68][69][70] Recommendations put forth by YAs in this review highlight the need for services that are continuous in nature; patient-centred; and are supported by family, peers, and clinicians. Practice reports and guidelines from the AAP/AAFP/ACP, Children's Healthcare Canada, and the Canadian Paediatric Society on the transition of youth to adult healthcare include recommendations for addressing these same barriers and improving clinical practice outcomes.…”

Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

“…Two studies addressed the needs of adolescents and young adults living with a chronic or rare condition. A quality-improvement study assessing the needs of adolescents and young adults ( n = 89) with neurofibromatosis type 1, cancer, primary immunodeficiencies, or sickle cell disease, and of their caregivers ( n = 37), was conducted by Allen and colleagues [ 12 ]. The subjects completed a survey developed for this study to identify a range of informational and service-related needs.…”

Infection-related hospitalisation in young adults with systemic lupus erythematosus: data from the National Inpatient Sample

“…Young adulthood is a vulnerable period in the life of a patient with chronic disease, due to limited understanding of the disease process and major life transitions that co-occur with chronic healthcare needs, with implications on psychosocial state and treatment adherence. 8 A study reported a mean time of approximately 9 months from last paediatric to first adult provider visit. 9 Poorer outcomes including higher mortality and increased disease activity have been reported in the post-transition period.…”

“…Care of young adults with either a new diagnosis of SLE or those transitioning care from paediatric to adult rheumatology is challenging. Young adulthood is a vulnerable period in the life of a patient with chronic disease, due to limited understanding of the disease process and major life transitions that co-occur with chronic healthcare needs, with implications on psychosocial state and treatment adherence 8. A study reported a mean time of approximately 9 months from last paediatric to first adult provider visit 9.…”