Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Abstract

services in Ghana aims to enhance survival into adulthood, creating emerging need for transition from pediatric to adult care. Anticipating transition for adolescents with SCD, we sought to understand patient and caretaker perspectives on transition to adult care within Ghana. MATERIALS AND METHODS: Structured interviews were conducted with a sample of patients ages 12-15 years and accompanying adults at Ghana's Komfo Anokye Teaching Hospital Sickle Cell Clinic (KATH SCC) covering four areas: SCD medical knowledge, symptom self-management, psychosocial impact, and transition preparation. RESULTS: In total, 46 children (mean age 13 years) paired with 46 adults were interviewed. Most children and caretakers had some knowledge about SCD and disease management. At least one-third lacked knowledge about SCD as an inherited condition. Youth were significantly more concerned about family burden and social stigmatization than adults. Most were unaware that patients are expected to switch care to adult medical providers by age 15 years, but were willing to transfer if needed. CONCLUSIONS: Our clinic-based assessment at KATH SCC identified needs of adolescents and caretakers for education and counseling about disease, self-management, transition, family burden, and stigmatization. These findings provide insights into perspectives and educational gaps of families treated for SCD. Results suggest consideration of transition planning for adolescents with SCD and their caretakers in Ghana. Generalizability of our findings and practical methods to address needs for transition within Africa remain to be tested. Conflict-of-interest statement: The author(s) declare(s) that there is no conflict of interest regarding the publication of this paper. Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http: //creativecommons.org/licenses/by-nc/4.0/ ABSTRACT AIM: Sickle Cell Disease (SCD) is associated with high child mortality and birth incidence in sub-Saharan Africa. Improved SCD medical International Journal of Hematology Research ogy and KATH. Study inclusion criteria were: KATH SCC patients with SCD ages 12-15 years attending the clinic between June-August 2016 and the accompanying adult. Potential participants were approached in the KATH SCC clinic by two research staff members, both Ghanaian-born native speakers of English and Twi (MKS and CKT). Families were approached to offer study participation if the child was not having pain or other acute symptoms. Oral consent and assent were obtained from adult and pediatric subjects, respectively, following the reading of an IRB-approved script by one of these two study staff. Structured interviews using a guide questionnaire were conducted following enrollment. Both the consent/assent script and the guided interview were offered in English or in Twi (a predominant language spoken by most of the clinic attendees), and selected per subject preference. Interview questions had been adapted from two surveys that previously had been used to assess transition readiness and transition related concerns of adolescents in the U.S.: Sickle Cell Transfer Questionnaire (SCTQ) [13] and Transition Intervention Program Readiness for Transition (TIP-RFT) [23]. Those studies had identified four major domains that were relevant to SCD transition from pediatric to adult care cited above. Our interview consisted of 31 questions to touch on all four domains, affording structured and narrative responses. Questions on demographics and clinic utilization were also included in the interview. Responses from pediatric or adult participants were recorded on paper by the interviewer and later analyzed. For each question, the adults were asked for their perceptions of how the child would respond to or think about each question. Interview questions were first piloted with a small number of patients and their accompanying adults. To ensure fidelity of the interview process, the lead interviewer (MKS) demonstrated obtaining consent/assent and interviewing to the secondary interviewer (CKT). Subsequently, interviews by the latter were observed by the former. Periodic discussions on adherence to consistent methodology continued during the course of study period to ensure continued fidelity. In almost all cases, interviews with patients and the accompanying adult were conducted separately to minimize response bias. Notes from the interviews were taken in the interview language, then translated into English by MKS. Following the interview, the child's clinic-based medical record was reviewed to confirm the child's sickle cell type (HbSS, HbSC, other). Descriptive statistics and qualitative analysis were used for data analysis. P-values were calculated using Chi-square test. Quotes from subjects were transcribed and translated by MKS, and used to illustrate specific points. RESULTS Piloting Four children and four accompanying adults were interviewed. Subsequently, minor language changes were made to the guide to improve clarity and two follow-up questions were added on clinic utilization. Recruitment A total of 53 children and 49 adults attending the KATH SCC were invited to participate in the study. Five children were ineligible, one declined and one did not complete an interview. One adult declined to participate and two did not complete interviews. In all, 46 children and 46 accompanying adults met eligibility criteria, consented and