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Optimizing Care Transitions in CHD

A legfontosabb adatok

Ki végzi
The Hospital for Sick Children
Hol
Kanada1 helyszín, 1 országbanVálassz országot a helyszínekhez
Azonosító
Állapot
Toborzás még nem indult
Résztvevők
110 fő, tervezett
Kezdés
2026. szept.
Várható befejezés
2027. dec.
A vizsgálat típusa
Beavatkozással járó, 2 csoportAz egyik csoport nem kap vizsgálati kezelést, összehasonlításként.
A vizsgált kezelések
  • Peer mentorship
A regiszteradat frissítve
2026. október 27.

Ki vehet részt

MI-összefoglaló

A vizsgálat saját részvételi feltételeiből. Gép olvasta ki az oldalon álló regiszterszövegből, ezért tévedhet. Hogy ki vehet részt, azt a lenti regiszterszöveg és a vizsgálat csapata dönti el.

The trial is looking for young people aged 16-25 with moderate to severe congenital heart disease (a heart problem present from birth) and their parents. It also needs young adult and parent volunteers to act as online peer mentors.

Életkor
Young people (mentees): 16-25 years old. Young adult mentors: 21-30 years old. Parents: no age limit given.
Nem
All sexes can join.
A betegség stádiuma
Moderate to severe congenital heart disease. The treating heart doctor or a qualified health professional must expect a 5-year survival rate of more than 70%.
Korábbi kezelés
Young people cannot join if they had surgery for their heart disease in the last 6 months or had a heart transplant. The same applies to the child of a parent who wants to join.

A részvétel fő kizáró okai

  • Serious problems with thinking or memory, as judged by a qualified health provider
  • An active mental health disorder, such as major depression, that would get in the way of managing care
  • Heart surgery for congenital heart disease in the last 6 months, or a heart transplant (for the young person or the parent's child)
  • Already taking part in another peer support program
  • Receiving end-of-life care (the young person or the parent's child)

A regiszter feltételei, szó szerint

Mind a 7 feltétel megnézéseKevesebb

Ki vehet részt

  • AYA with CHD; diagnosed with moderate to severe CHD with an expected 5-year survival rate of more than 70% according to the treating cardiologist or a qualified healthcare professional,; 16-25 years old with the capacity to give consent,; able to speak and read English,; willingness to commit to 5-10 texts and/or calls of 20-30 minutes each with a peer mentor over a period of 12 weeks,; access to a device (e.g., smartphone, tablet, computer) capable of using free WhatsApp software
  • Parents of AYA with CHD; parent of an AYA between the ages of 16 and 25 with moderate to severe CHD with an expected 5-year survival rate of more than 70% according to the treating cardiologist or a qualified healthcare professional currently followed by SickKids,; access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software,; able to speak and read English, and (4) willingness to commit to 5-10 texts and/or calls of 20-30 minutes each with a parent mentor over a period of 12 weeks
  • Young adult mentors (1)21-30 year old with CHD (2) nominated by a member of their healthcare team as a good candidate to act in the mentor role based on maturity and emotional stability (e.g., good communication skills, positive adaptation and adjustment, strong support network), (3) willingness to commit to virtual peer mentor training, (4) able to speak and read English, (5) access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software
  • Parent mentors; parents of AYA with CHD between the ages of 21-30 year old; willingness to commit to virtual peer mentor training,; able to speak and read English,; access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software

Ki nem vehet részt

  • AYA mentees will be excluded if they: (1) have significant cognitive impairments as assessed by a qualified healthcare provider, or (2) have a diagnosis of an active psychological disorder (e.g., Major Depressive Disorder) likely to interfere with their ability to manage their care as determined by a qualified healthcare provider, or (3) received surgery for a CHD diagnosis in the last 6 months, or (4) have undergone a heart transplant, or (5) are participating in current peer support programs, or (6) are receiving end-of-life care
  • Parent mentees will be excluded if; they have significant cognitive impairments as assessed by a qualified healthcare provider, or; they have a diagnosis of an active psychological disorder (e.g., Major Depressive Disorder) likely to interfere with their ability to manage their child's care as determined by a qualified healthcare provider, or; their child received surgery for a CHD diagnosis in the last 6 months, or; their child has undergone a heart transplant, or; they are participating in current peer support programs, or; their child is receiving end-of-life care
  • Young adult and parent mentors; Significant cognitive impairments as assessed by a qualified healthcare provider, or; have a diagnosis of an active psychological disorder (e.g.: Major Depressive Disorder, etc.; determined through chart review by a qualified HCP) likely to influence assessment of health-related quality of life and/or interfere with their ability to manage their own care, or; are participating in other peer support or self-management interventions

Ennek a vizsgálatnak nincs helyszíne itt: Egyesült Államok.

Egy országban van helyszíne. Válassz országot, hogy lásd a helyszíneket.

A vizsgálatról

Mit akar kideríteni a vizsgálat

Adolescents and young adults (AYA) with congenital heart disease (CHD) face psychosocial stresses as they transition to adult care. Parents of AYA with CHD also experience increased caregiver burden and psychosocial stresses. Peer support provided by a person with a similar experience has been found to improve disease self-management and psychosocial health outcomes in pediatric healthcare. However, many AYA with CHD still do not have access to formal social support resources. The aim of this study is to improve pediatric to adult transitions in healthcare by evaluating peer mentorship programs for AYA with CHD and their parents.

A teljes eredeti leírásKevesebb

Established, online mentorship programs, iPeer2Peer(iP2P)/iParent2Parent, will be employed through a pilot feasibility waitlist randomized controlled trial with repeated measures across four sites. Eighty mentees (AYA and parents of AYA) will be recruited and randomized into intervention and control groups. Forty mentees in the intervention group will be matched 1:1 with 30 trained mentors (young adults and parents of AYA). AYA mentees will be matched with young adult mentors and parents of AYA will be matched with other parent mentors. These pairings will connect over 12 weeks through video calls and text messaging to provide peer support to improve self-management and psychosocial health outcomes.

A vizsgálat 2 csoportja

  • Intervention groupA vizsgált kezelés

    In addition to their standard medical care, mentees in the experimental group will receive mentorship and support via the iP2P/iParent2Parent program. Trained mentors will provide information and support to mentee participants to encourage participation in self-management skill-building tailored to their needs. Each mentor will work with no more than two mentees at once for the study. Efforts will be made to pair mentors and mentees who share similar characteristics (e.g., similar disease severity, symptom profile, treatment regimen experiences, caregiver role, sex/gender, geographic area of residence). To ensure safety, a member of the research team will monitor all calls and messaging conversations as well as intervene in any potential safety concerns (e.g., discussion of suicidal ideation) or inappropriate behavior (e.g. bullying).

    Kezelés: Peer mentorship

  • Waitlist control groupNincs vizsgálati kezelés, összehasonlításként

    The control group will receive standard care without the iP2P/iParent2Parent intervention. The control group will be offered the iP2P/iParent2Parent intervention after completion of all outcome measures for a period of 12 weeks with the same research team support.

Kérdések a vizsgálat csapatának

  1. Milyen gyakran kell bejárnom, és egy-egy alkalom mennyi ideig tart?
  2. Megtérítik az utazási költséget?
  3. Megtarthatom a saját orvosomat?
  4. Mi történik, ha ki akarok lépni?

Contact the study team: see the registry record → Contacts and Locations

Oldal nyomtatása az orvosomnak

Adatok és források

Regiszteradat
Szerepel a ClinicalTrials.gov-on.
Hivatalos cím
Optimizing Care Transitions in Congenital Heart Disease: Pediatric to Adult Transition
MI-összefoglaló
A vizsgálat saját részvételi feltételeiből. Gépi kiolvasás: 2026. november 14.
A regiszteradat frissítve
2026. október 27.