UnknownNot Applicable

Parents in Transition - a Nurse-led Support and Transfer Education Program

Denmark64 participantsStarted 2021-07-01

Plain-language summary

OBJECTIVE To improve chronically ill adolescents' transition to adult care by preparing and supporting the parents. The study aim is to improve parents' (of chronically ill adolescents, 16-18 years) transition readiness by offering them a brief transition program. HYPOTHESIS Young peoples´ self-management skills are mainly developed at home, guided by their parents, rather than in consultations with health professionals. The investigators hypothesize that a nurse-led transfer intervention focusing on parents' knowledge, skills and attitudes will: 1. improve the parents´ readiness for their child's transition to adult health care 2. support the parents' gradual handing over of treatment responsibility to the adolescent and, that an improvement in parental transition readiness will 3. strengthen the adolescent's self-management skills and increase his/her readiness for transition. BACKGROUND Transfer from paediatric to adult care for chronically ill adolescents is associated with no-shows and low treatment adherence, as well as anxiety and concerns among parents. Studies show that support for parents results in better transition for both parties. INTERVENTION ParTNer-STEPs is a transfer program consisting of three initiatives: 1. a website with information about the adult department and legal changes as well as advice from other parents and young people 2. online teaching events (web based seminars) for parents 3. transfer consultations across the paediatric and adult department METHOD The intervention will be evaluated in a randomized controlled trial (RCT) study over two years. The project will be carried out in four paediatric outpatient clinics at Rigshospitalet, Copenhagen University Hospital, Denmark: nephrology, hepatology, neurology and rheumatology. Based on a power calculation, the investigators aim to include parents of minimum 62 adolescents. Primary outcome: Parents' transition readiness (TR). Secondary outcomes: Adolescents' TR, self-management skills, and quality of life.

Who can participate

Age range

198 Months – 210 Months

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: Parents, stepparents or guardians of chronically ill adolescents, who * are aged 16.5-17.5 years (can be recruited up to six months before transfer) * have been diagnosed for minimum six months * have regular check-ups at the Department of Paediatrics and Adolescent Medicine's nephrology, hepatological, neurological and rheumatological outpatient clinics at Rigshospitalet, Denmark. * are transferred to an adult hospital department * are mentally and cognitively able to take responsibility for their own treatment Exclusion Criteria: * Parents who do not read and speak Danish * Parents of adolescents who will be transferred to their family doctor at the age of 18 year.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Transition readiness (TR)

Timeframe: Change from baseline TR at transfer (last consultation in paediatrics)

Trial details

NCT IDNCT04969328

SponsorGlostrup University Hospital, Copenhagen

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2024-12-31

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