Trial reportHealth expectations : an international journal of public participation in health care and health policy2011
Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy.
Trial report in Health expectations : an international journal of public participation in health care and health policy, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 4 of them syntheses that pooled 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.
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.
Who cites it
35 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Pooled it
- Patient and service user engagement in research: a systematic review and synthesized framework.Health expectations : an international journal of public participation in health care and health policy · 2015Pooled it
- A systematic review of approaches for engaging patients for research on rare diseases.Journal of general internal medicine · 2014Pooled it
- Patient engagement in research: a systematic review.BMC health services research · 2014Pooled it
- A patient perspective on applying intermittent fasting in gynecologic cancer.BMC research notes · 2023Trial
- Involvement of persons with lived experience in mental health research: recommendations.Neuroscience applied · 2026Article
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review.Research involvement and engagement · 2025Review
- Community Advisors' Effect on a Randomized Pragmatic Clinical Trial for Asthma Treatment: Retrospective Analysis.Journal of participatory medicine · 2025Article
- Patient and Public Involvement in Inflammatory Bowel Disease Research-A Scoping Review.Journal of the Canadian Association of Gastroenterology · 2024Article
- Engaging Cancer Care Physicians in Off-Label Drug Clinical Trials: Human-Centered Design Approach.JMIR formative research · 2024Article
- Patient Involvement in the Design of an Innovative Clinical Study to Compare the Palatability of Anti-Hyperkalemia Medications.Patient preference and adherence · 2024Article
- The co-design of an exercise-based, lifestyle intervention for people with venous leg ulcers; a self-care, expert-supported strategy for a chronic condition.International wound journal · 2023Article
- The most important problems and needs of rasopathy patients with a noonan syndrome spectrum disorder.Orphanet journal of rare diseases · 2023Article
- Including the voice of paediatric patients: Cocreation of an engagement game.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- What Matters to Whom: Patient and Public Involvement in Research.Clinical obstetrics and gynecology · 2022Article
- Motivators and barriers to research participation for individuals with cerebral palsy and their families.PloS one · 2022Article
- Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review.Orphanet journal of rare diseases · 2021Article
- A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one.Research involvement and engagement · 2021Review
- Development of the patient-oriented research curriculum in child health (PORCCH).Research involvement and engagement · 2021Article
- Measuring Quality of Life in Ovarian Cancer Clinical Trials-Can We Improve Objectivity and Cross Trial Comparisons?Cancers · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough the UK Department of Health has advocated the involvement of service users and carers in health research for several years, there is little evidence about their contribution to the design of randomized controlled trials (RCTs).
objectiveTo demonstrate how consulting parents about the design of a study, including which outcomes to use, led to the design and successful delivery of a RCT of osteopathy for children with cerebral palsy (CP).
designSemi-structured interviews were carried out with 20 parents of children with CP and other neurological conditions, asking them to choose between four different trial designs, to talk about noticeable changes in their child's condition and their views about payment for trial treatment. SETTING AND
participantsThe parents interviewed were all members of Cerebra, a charity for 'brain-injured' children and young people. All interviews were carried out at the parents' homes.
resultsParents had mixed views about possible trial designs; however, a waitlist design which allowed all children eventually to receive the treatment emerged as a clear favourite. Parents did not focus on isolated outcomes, but suggested a range of factors relevant to their child's quality of life. They expressed a clear preference for the costs of treatment to be funded by the trial.
conclusionsInvolvement of parents helped design a trial which was acceptable to families and addressed outcomes that mattered to them. By consulting parents about the design of the research, the subsequent trial achieved excellent recruitment and retention rates.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.