Clinical trial NCT04888273: Assessing the Feasibility of an Intervention for Youth and Parents Transitioning to Adult Eating Disorder Services
Official title: Assessing the Feasibility of an Intervention for Youth and Parents Transitioning From Pediatric to Adult Eating Disorder Services: A Mixed Methods Study
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Eating Disorders
Eating Disorders in Adolescence
Keywords: healthcare transition
health services
adolescent medicine
Lead sponsor: McMaster University
Sponsor class: OTHER
First posted: 2021-05-17
Enrollment: 19
Sex: ALL
Minimum age (years): 17
Maximum age (years): 17
Standard ages: CHILD
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: Single Group Assignment
Primary purpose: HEALTH_SERVICES_RESEARCH

Brief summary: Teenagers with eating disorders often experience a disruption in care upon turning 18. At this age, they are no longer eligible to receive pediatric treatment but are also not yet set up with the appropriate adult services. There are currently no supports in place to help youth with eating disorders and their families during this transition from child to adult care. In this project, the investigators will be implementing an intervention designed to improve this transition experience; it will include peer support, parent education, a meeting with the child and adult care providers, contact with the family doctor, and a written guide about the transition. Among 10 adolescent-parent pairs leaving McMaster Children's Hospital to adult programs in Hamilton, Ontario, the investigators will assess how feasible the intervention is to implement, how feasible the chosen measures are, participants' experience of the intervention, how many adolescents actually transition to adult care, as well as a few adolescent and parent outcomes, such as how prepared the teen feels or what the parents' needs are.

Detailed description: Eating disorders (EDs) are severe psychiatric illnesses that negatively impact the health and quality of life of sufferers and their families. EDs typically begin in adolescence and often progress into adulthood, often requiring youth to transition from pediatric to adult mental health services. However, patients often experience a discontinuity in care due to a lack of coordinated transition between services, which has a significant impact on their health. Although barriers to a smooth transition and solutions to mend the gap have been identified in the literature, there is no stakeholder-informed protocol in Canada to address this issue.

The aim of this project is to develop and test a protocol to support the health services transition from pediatric to adult treatment for adolescents with EDs and their families.

The investigators have prepared a protocol aimed at improving this transition experience using suggestions from the existing literature. The investigators will also invite stakeholders to offer recommendations for its local use. The proposed suite of interventions will be tested in a sample of adolescents who are in treatment at a pediatric ED program based in Hamilton, Ontario during their transition to adult services, along with their parents. The investigators will report upon enrolment and retention rates into adult programs, feasibility indicators of the intervention and research procedures, self-reported readiness to transition, post-transition qualitative interviews with adolescents and parents regarding their experience, and written reflections by all participants regarding each intervention component. The eligibility criteria and outcome measures will be elaborated upon below.

If this study is successful, the investigators will test the feasibility, acceptability, and cost of this protocol across pediatric ED programs in Ontario, and eventually Canada. This innovative protocol has the potential to improve health outcomes for this population, to decrease long-term disability costs associated with EDs, and to improve the quality and success of the mental health service delivery that directly influences the quality of life of Canadian youth and families affected by EDs.

Eligibility criteria: Inclusion Criteria for Adolescents:

* 3-6 months away from 18th birthday
* Be currently diagnosed with an ED
* Enrolled at McMaster Children's Hospital's Pediatric Eating Disorder Program
* Be in the process of preparing for a healthcare transition to local adult ED services based on pediatric healthcare providers' recommendation

Inclusion Criteria for Parents:

* Must be the parent of an adolescent who meets the criteria above

Inclusion Criteria for Adolescents and Parents

* English-speaking
* Access to a working computer with a functioning microphone and regular internet connection

Primary outcomes:
measure: Proportion of Intervention Components Completed
timeFrame: Post-Intervention (12 weeks)
measure: Type of Intervention Components Completed
timeFrame: Post-Intervention (12 weeks)
measure: Average Duration of Time to Complete Each Intervention Component
timeFrame: Post-Intervention (12 weeks)
measure: Average Duration of Time to Complete the Intervention
timeFrame: Post-Intervention (12 weeks)
measure: Adolescent Perceptions of the Feasibility of the Intervention
timeFrame: Post-Intervention (12 weeks)
measure: Parent Perceptions of the Feasibility of the Intervention
timeFrame: Post-Intervention (12 weeks)
measure: Adolescent Perceptions of the Feasibility of the Each Intervention Component
timeFrame: Throughout the participant's intervention period (0 to 12 weeks)
measure: Parent Perceptions of the Feasibility of the Each Intervention Component
timeFrame: Throughout the participant's intervention period (0 to 12 weeks)
Secondary outcomes:
measure: Study Interest Rate
timeFrame: 10 months after baseline
measure: Study Recruitment Rate
timeFrame: 10 months after baseline
measure: Study Completion Rate
timeFrame: 10 months after baseline
measure: Proportion of Missing Data
timeFrame: 10 months after baseline
measure: Average Duration of Time to Complete Data Collection Measures
timeFrame: 10 months after baseline
measure: Adolescent Perceptions of the Feasibility of the Research Procedures and Methods
timeFrame: Post-Intervention (12 weeks)
measure: Parent Perceptions of the Feasibility of the Research Procedures and Methods
timeFrame: Post-Intervention (12 weeks)
measure: Adolescent Experience of the Intervention
timeFrame: Throughout the participant's intervention period (0 to 12 weeks) and at Post-Intervention (12 weeks)
measure: Parent Experience of the Intervention
timeFrame: Throughout the participant's intervention period (0 to 12 weeks) and at Post-Intervention (12 weeks)
measure: Enrolment and Retention to Adult Care
timeFrame: 1 month after the participating adolescent's 18th birthday
measure: Change in Adolescent's Range and Severity of Eating Disorder Symptoms - Eating Disorder Examination Questionnaire
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each adolescent's time in the intervention
measure: Change in Adolescent's Level of Readiness for Transition - Transition Readiness Assessment Questionnaire
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each adolescent's time in the intervention
measure: Change in Adolescent's Awareness of their Eating Disorder and Ability to Make Healthcare-Relevant Decisions - Self-Management Skills Assessment Guide (Youth Report)
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each adolescent's time in the intervention
measure: Change in Adolescent's Readiness and Motivation to Change Eating Disorder Symptoms and Behaviours - Eating Disorders Readiness Ruler
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each adolescent's time in the intervention
measure: Change in Parent's Perceived Burden and Impact of Child's Eating Disorder Symptoms on Their Lives - Eating Disorder Symptom Impact Scale
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each parent's time in the intervention
measure: Change in Parent's Perceived Needs as a Carer of an Individual with an Eating Disorder- Carers Needs Assessment Measure
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each parent's time in the intervention
measure: Change in Parent Self-Efficacy and Collaboration with Other Parents - Patient and Carer Collaboration Scale
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each parent's time in the intervention
measure: Change in Parent's Perception of their Child's Awareness of their Eating Disorder and Ability to Make Healthcare-Relevant Decisions - Self-Management Skills Assessment Guide (Parent Report)
timeFrame: At Baseline (0 weeks) and Post-Intervention (12 weeks) of each parent's time in the intervention
measure: Adolescent Demographics
timeFrame: At Baseline (0 weeks) of each adolescent's time in the intervention
measure: Parent Demographics
timeFrame: At Baseline (0 weeks) of each parent's time in the intervention
Other outcomes:
Locations:
city: Hamilton
country: Canada
facility: McMaster Children's Hospital
state: Ontario
Study officials:
References: