Search

Background/objectives: Hope is a universal, multidimensional, and nuanced concept that may have specific meaning for young people living with chronic health conditions anticipated to last into adulthood. We previously identified definitions of hope for youth living with chronic health conditions derived from young people's and their caregivers' own words. Here, we aimed to develop a hope assessment tool to facilitate the future evaluation of interventions to support wellness and health for young people growing up with chronic health conditions; Methods: We developed Likert-type scale questions using the young people's and caregivers' definitions of hope and applied the think-aloud cognitive interview method to assess understanding and to inform sequential iteration. Interviews were recorded and insights from participant interviews were analyzed thematically., Results: In total, 11 youth (age 12-16 years) with various chronic health conditions completed surveys and interviews over three iteration cycles. Responses to the six-point Likert-scale questions ranged from 1 (none of the time) to 6 (all of the time) (median 5). All of the young people (n = 11) reported that they do things they enjoy, either all of the time or most of the time. In contrast, only 36% felt energetic, either all or most of the time. Three themes were identified: my body and hope; my identity, self-image, and hope; and my world and hope., Conclusions: In addition to gaining important feedback that allowed us to improve item word choice to maximize assessment tool understanding, we gained valuable insights into the multidimensional construct of hope. Thematic analysis revealed the importance of physical symptoms and identity to the meaning of hope in the context of a young person's life. Our new hope assessment tool derived from the young people's own definition of hope has face and content validity for use in clinical and research settings to evaluate hope among pediatric patients living with chronic health conditions.

Background/objective: We sought to understand healthcare utilization and barriers to care among youth with chronic illness who interact frequently with the healthcare system., Methods: This was a retrospective analysis of healthcare utilization for youth ≤25 years of age with chronic illness during one calendar year (1 January 2021-31 December 2021) in a single urban academic healthcare system. Inclusion criteria were (1) having at least one healthcare encounter in the calendar year of 2021 and (2) having at least six healthcare encounters over the preceding 3-year period or having a qualifying chronic illness. Demographic and clinical characteristics were collected along with self-reported and derived social determinants of health. Univariable and multivariable regression models were created to identify predictors of missed clinic visits, telehealth use, and activated patient portal accounts., Results: The cohort (N = 14,245) was demographically, clinically, and socioeconomically diverse. The youth had frequent clinic visits (median 9, IQR 4-18), multiple subspecialty care referrals (median 4, 1-8), were prescribed multiple medications (median 6, 3-10), and a high proportion received emergency department (18%) or inpatient treatment (15%). Race and public insurance were significant predictors of missed clinic visits and telehealth use. Primary language was a significant predictor of patient portal activation., Conclusions: Youth with chronic illness who are high users of the healthcare system face a high burden of clinic, emergency room, and hospital visits, referrals, and medications. Systematic efforts to lower the healthcare burden and improve care access should address existing racial and socioeconomic disparities affecting this patient population, who are likely to need frequent healthcare over their lifetime.

The impact of thalassemia major and thalassemia intermedia and their associated complications on quality of life (QOL) is largely unknown. Determining the degree of health impairment as perceived by the patient is essential information needed to recommend suitable therapy. The objective of this study was to evaluate QOL in transfusion-independent patients with thalassemia (non-Tx) compared with that in transfused patients (Tx) and to identify the factors that affect QOL in thalassemia. A convenient sample of 48 thalassemia patients (29 Tx and 19 non-Tx) with mean age of 14.6 years (SD = 7.5 years) were selected during a comprehensive visit to complete a Dartmouth Primary Care Cooperative Information Chart System (COOP) questionnaire. Patients rated QOL from excellent (1) to poor (5) on five dimensions of health status. Scores of 4 or 5 represent major limitations. These results were augmented by a brief medical history and chart review. Forty-one percent of Tx patients and 47% of non-Tx patients reported severe impairments in 1-6 and 1-2 domains, respectively. The most commonly reported affected domains were feelings such as anxiety, depression, and concern of overall health status or indications of recent deterioration in health. In contrast with previous beliefs, transfusion-independent thalassemia patients also suffer serious impairment in QOL. Presented data suggest that all patients with thalassemia undergo QOL assessment so that interventions focused on affected domains can be implemented.