Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Provider Perspectives of Necessary Factors in Sickle Cell Disease Health Care Transition: Results from an Online Survey
source: American Society of Hematology
year: 2017
authors: Jerlym Porter, Kathryn Russell, Rebecca Rupff, Marsha Treadwell, Maria Ferris, Jane S Hankins, Winfred Wang
summary/abstract: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.
organization: St. Jude Children's Research Hospital, Memphis, TN; UCSF Benioff Children's Hospital Oakland, Oakland, CA; University of North Carolina, Chapel Hill, NCread more
Related Content
-
Julie Makani, FRCP, PhDDr. Julie Makani is an Associate Profess...
-
University of Illinois HospitalThe Sickle Cell Program at UI Health is ...
-
Allison A. King, MD, MPH, PhDDr. King is a pediatric hematologist and...
-
2023 NHLBI Annual Sickle Cell Disease Research MeetingSave the Date for the NHLBI Annual Sickl...
-
Sickle cell patients in UK survey, especially those 16 to 20, voice problems with care and pain relief givenIn a survey, patients across the...
-
High mortality among children with sickle cell anemia and overt stroke who discontinue blood transfusion after trans...BACKGROUND: Chronic blood transfusion is...
-
Sickle Cell Disease: Data Saves Lives“One minute I’d be fine, the next mi...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.