Aging adolescents with rheumatic disease adopt responsibility for disease management from parents. Education on transition care is usually provided to patients by healthcare providers or parents. However, parent-focused transition resources are sparse with limited understanding of parental role and involvement during transition. After providing both parent and adolescent with the Transition Toolkit (parent-centered transition pamphlet, 5 domains of transition readiness roadmap, tip sheets) to support transition to adult care, we aimed to i) determine the change in patient’s transition readiness, using the Transition-Q, ii) explore the influence of parent-adolescent relationships on transition readiness, using the Parent-Adolescent Communication Scale (PACS), and iii) obtain feedback on the Toolkit’s effectiveness, using a questionnaire. A prospective cohort study of patients 14-18 years was conducted at McMaster Children’s Hospital rheumatology transition clinic (includes pediatric rheumatologists, allied health, and the adult rheumatologist patients see post-transfer). Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected. After obtaining 2 Transition-Q scores from routine clinical care prior to enrollment, the Toolkit was shared with participants, and 2 follow-up Transition-Q scores were collected. Generalized estimating equation analyses were performed to determine the Toolkit’s impact on transition readiness and explore the parent-adolescent relationship and communication quality. Subgroup analyses were conducted by sex. A questionnaire was used to obtain Toolkit feedback. Of 21 patients, 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared with adolescents and parents (β=7.8, P<0.0 and β=15.5, P<0.0, respectively). Transition readiness did not seem to be influenced by the quality of communication between parent and child. Feedback from questionnaire responses found the Toolkit to be a helpful resource but standardization of transition programs and further investigation into parent-adolescent relationships, gender differences, and intervention sustainability is needed. / Thesis / Master of Science Rehabilitation Science (MSc) / Aging youths with rheumatic disease adopt the responsibility of disease management from parents. However, few resources to educate parents on transition and transition support exist. After giving patients and parents a Transition Toolkit, we aimed to i) determine change in patient’s transition readiness, ii) explore the influence of parent-adolescent relationships on transition readiness, and iii) obtain feedback on Toolkit use. Twenty-one study participants were recruited. Participant demographics, transition readiness scores, and parent-adolescent communication scores were collected. Transition-Q scores were collected before and after Toolkit provision. Analyses were performed to determine Toolkit impact and influence of parent-adolescent communication on transition readiness. Toolkit feedback from parents and adolescents were obtained through a questionnaire. Transition-Q scores increased at each follow-up, with the greatest increase after the Toolkit was shared. Parent-adolescent relationships did not influence transition readiness. Toolkit feedback suggests digital reminders to improve long-term retention of transition education. Future studies with greater patient diversity are recommended.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/29443 |
| Date | 05 1900 |
| Creators | Heera, Simran |
| Contributors | Batthish, Michelle, Gorter, Jan-Willem, Rehabilitation Science |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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