The Needs of Adolescents and Young Adults with Chronic Illness
Results of a Quality Improvement Survey
Bibliographic Data
| ID | 15715989 |
|---|---|
| Authors | Taryn Allen (0000-0002-7661-1380, National Cancer Institute), Stephanie Reda (0000-0002-8591-2804, National Cancer Institute), Staci Martins (0000-0002-9342-4173, National Cancer Institute), Phoebe Long (0000-0002-2216-9363, National Cancer Institute), Alexis Franklin (National Cancer Institute), Sima Zadeh Bedoya (0000-0002-5431-7965, National Cancer Institute), Lori Wiener (0000-0002-9573-8870, National Cancer Institute), Pamela L Wolters (0000-0001-9319-6281, National Cancer Institute, corresponding author) |
| Year | 2022 |
| Volume | 9 |
| Issue | 4 |
| Pages | 500-500 |
| Publication date | 2022-04-02 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children9040500 |
| PMID | 35455544 |
| OpenAlex | W4224308648 |
| Language | EN |
| Citations received | 4 |
| References cited | 32 |
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
Disease · Environmental health · Family medicine · Health care · Needs assessment · Population · Psychiatry · Psychological intervention · Psychosocial · Quality of life (healthcare · Young adult · Adolescent and Pediatric Healthcare · Childhood Cancer Survivors' Quality of Life · Family Support in Illness · Medicine · Nursing · Gerontology
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| Unique citing works | 4 |
|---|---|
| Citations per year | 2 |
| Citation span | 2024 - 2026 (3) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 3 |