Provider Perspectives of Necessary Factors in Sickle Cell Disease Health Care Transition: Results from an Online Survey

Jerlym Porter, Kathryn Russell, Rebecca Rupff, Marsha Treadwell, Maria Ferris, Jane S Hankins and Winfred Wang


Introduction: Survivorship of children with sickle cell disease (SCD) has substantially increased due to the advent of medical advances, such as sepsis prevention (prophylactic penicillin) and exposure to disease-modifying therapies (chronic transfusion and hydroxyurea). Despite greater longevity in SCD, the period surrounding the transition from pediatric to adult care has the highest prevalence of undesirable outcomes: youth aged 18-30 years are at high risk for mortality and high rates of healthcare utilization, resulting in increased healthcare costs. As such, health care transition programs have been created to prepare patients with SCD for adult-centered care and subsequently, improve health outcomes. However, few programs have been evaluated for effectiveness in achieving optimal health outcomes in SCD in part because of a lack of identifiable predictors and outcomes.

Objective: To identify factors necessary for successful health care transition, as judged by pediatric and adult healthcare professionals involved with the SCD population.

Method: Individuals who provide clinical care for or conduct clinical research with patients with SCD were eligible to participate in the survey and were collectively defined as providers. Providers were recruited online through nationally recognized professional societies, SCD provider contact lists and in person at a national SCD conference. Links to an online survey, administered via Qualtrics software, were distributed to potential participants. The survey included demographic questions and a list of 36 transition factors, including disease knowledge, self-management behaviors, and independent living skills. Participants were asked to rate the level of importance of each factor in helping a patient with SCD successfully transition from pediatric to adult care on a scale from 1 (not important) to 10 (very important). They were then asked to select five of the 36 factors they believed were most necessary for a successful transition, ranking them from 1 (highest) to 5 (lowest). Descriptive statistics were conducted to determine the top ratings and rankings. A two-way MANOVA was conducted to examine whether the top ratings were different according to provider gender and occupation.

Results: The sample included 258 providers (74% female, 65% White). The majority were hematologists (41%); 38% were other medical staff (e.g., nurse, midlevel providers, other physicians) and 21% were non-medical staff (e.g., psychologist, social worker, researchers). The transition factor ratings (scale 1 to 10) ranged from 5.82-9.62 (M=8.05, SD=1.74). The factors with the highest ratings included: Knows how to take medications (M=9.62, SD=0.82), Explains/communicates medical needs to medical personnel (M=9.50, SD=0.93), Knows when to seek medical assistance if home management fails (M=9.32, SD=1.12), and Knows how to manage pain episodes (M=9.31, SD=1.18). These same four factors also were ranked as the top five most relevant factors: Knows how to manage pain episodes (N=138, 53%, M=2.59, SD=1.30), Explains/communicates medical needs to medical personnel (N=115, 45%, M=2.54, SD=1.38), Knows how to take medications (N=135, 52%, M=2.67, SD=1.31), Knows when to seek medical assistance if home management fails (N=102, 40%, M=2.97, SD=1.46). Knows medical history (N=100, 39%, M=2.57, SD=1.35) was the fifth most relevant factor. Multivariate results indicated a trend toward hematologists giving lower ratings compared to other medical and non-medical professionals, F (8, 486) = 1.91, p = .057.

Conclusions: Our findings reveal the importance of attainment of disease knowledge and self-management skills for optimal transition from pediatric to adult care. Interventions and programming designed to prepare adolescents for transition should target these areas. Furthermore, disease knowledge and self-management skills may be meaningful predictors when evaluating transition outcomes and the effectiveness of transition programs during and after the health care transition process. Our data also indicated differences in provider ratings by profession, demonstrating the value of incorporating a variety of perspectives in assessing transitioning needs. Such efforts are essential to improve health outcomes and quality of care for patients with SCD transitioning to adult care.

Disclosures Porter: NHLBI: Research Funding.

  • * Asterisk with author names denotes non-ASH members.