Evidence map›Paper›PMID 37970217›Full record

ArticleCJC pediatric and congenital heart disease2023

Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care.

Emily K Hyde, Annette S H Schultz, Robin Ducas, Reeni Soni, Holly Bekkering, Dawn Barker, Andrea Klippenstein, Mudra G Dave, Chloe Frechette, Joanne St Goddard-Frechette and 3 more

Abstract read
In one paragraph

Article in CJC pediatric and congenital heart disease, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Emily K HydeWinnipeg Regional Health Authority, Winnipeg, Manitoba, Canada.
Annette S H SchultzCollege of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Robin DucasSection of Cardiology, Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
Reeni SoniChildren's Heart Centre, Department of Pediatrics, University of Manitoba, Winnipeg, Manitoba, Canada.
Holly BekkeringHealth Sciences Center, Winnipeg, Manitoba, Canada.
Dawn BarkerSt Boniface Hospital, Winnipeg, Manitoba, Canada.
Andrea KlippensteinCollege of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Mudra G DaveSt Boniface Hospital, Winnipeg, Manitoba, Canada.
Chloe FrechettePatient partner.
Joanne St Goddard-FrechettePatient partner.
Lori LesterPatient partner.
Shelly MclartyPatient partner.
Anna M ChudykWinnipeg Regional Health Authority, Winnipeg, Manitoba, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Transitioning from paediatric to adult congenital heart disease (CHD) care is a high-risk time for being lost to follow-up. Existing CHD transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences. Methods: We used a multilevel participatory process that engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops that culminated in the generation of recommendations for the essential components of a CHD transition programme. Results: The Transition Essentials recommendations inform what information, education, or support is required, who should provide it, and when and how it should be provided. Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones' life. The health care team should provide this information, education, and support with peer support options when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person. Conclusions: Engaging those with lived and clinical expertise to develop recommendations for the essential components of a CHD transition programme provides important insights missing from previous studies.

Identifiers

PMID37970217
PMCPMC10642106

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.