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Development of a core outcome set for evaluative research into paediatric cerebral visual impairment (CVI), in the UK
Anna Pease1, Trudy Goodenough1, Cath Borwick1
1Bristol Medical School, University of Bristol, Bristol, UK.
Insights
Researchers developed a core outcome set (COS) for cerebral visual impairment (CVI) research. This ensures studies on interventions for children with CVI focus on outcomes important to families and professionals, improving care.
Area of Science:
- Ophthalmology and Neuroscience
- Pediatric Research
- Clinical Trial Methodology
Background:
- Cerebral visual impairment (CVI) is a complex neurological condition affecting vision in children.
- Existing research on CVI interventions often lacks a standardized set of outcomes, hindering comparability and relevance.
- A Core Outcome Set (COS) is crucial for aligning research priorities with the needs of patients, families, and clinicians.
Purpose of the Study:
- To establish a consensus-driven Core Outcome Set (COS) for research evaluating interventions for children with cerebral visual impairment (CVI).
- To enhance the relevance and impact of CVI research by prioritizing outcomes meaningful to children, families, and healthcare professionals.
- To improve the quality of life and developmental trajectories for children affected by CVI.
Main Methods:
- Employed methods recommended by the Core Outcome Measures in Effectiveness Trials (COMET) Initiative.
- Conducted a literature review of outcomes in 13 CVI intervention studies.
- Utilized qualitative interviews with 24 participants (children, parents) and a two-round Delphi survey with 80 professionals and stakeholders, followed by a consensus meeting.
Main Results:
- The literature review identified 37 outcomes, and interviews yielded 22 additional outcomes.
- A consensus meeting involving 5 attendees ratified 15 key outcomes for the CVI COS.
- The ratified outcomes encompass vision, family well-being, information dissemination, and the child's engagement with their environment.
Conclusions:
- A robust Core Outcome Set (COS) for cerebral visual impairment (CVI) research has been successfully developed through multi-stakeholder engagement.
- The established COS will guide future research, ensuring a focus on clinically and personally relevant outcomes for children with CVI.
- Further research is recommended to refine measurement tools for COS items and adapt the COS as CVI interventions evolve.
Objectives:
Cerebral visual impairment (CVI) comprises a heterogeneous group of brain-related vision problems. A core outcome set (COS) represents the most important condition-specific outcomes according to patients, carers, professionals and researchers. We aimed to produce a COS for studies evaluating interventions for children with CVI, to increase the relevance of research for families and professionals and thereby to improve outcomes for affected children.
Design:
We used methods recommended by the Core Outcome Measures in Effectiveness Trials Initiative. These included a proportionate literature review of outcomes used in previous studies; qualitative interviews with children and families; a two-round Delphi survey involving parents, children and professionals and a consensus meeting to ratify the most important outcomes.
Setting:
Telephone interviews and online Delphi surveys of participants who all lived in UK or Eire.
Participants:
Eighteen parents and six young people were interviewed. Delphi participants (n=80 did both rounds) included professionals working with children who have CVI (teachers, orthoptists, ophthalmologists, optometrists, qualified teachers for visually impaired, family members (parents and siblings) and affected children.
Results:
The literature review included 13 studies yielding 37 outcomes. Qualitative interviews provided 22 outcomes. After combining and refining similar items, the first round contained 23 outcomes and the second 46. At the consensus meeting, 5 attendees recommended 27 outcomes for inclusion in the CVI COS, of which 15 were ratified as most important, including 4 related to vision; 1 to family well-being; 1 to adults around the child being informed about CVI and the rest to the child's abilities to engage with people and surroundings.
Conclusions:
Good engagement from participants led to the development of a COS. Future research will be useful to identify the best ways to measure COS items and potentially to update this COS as more interventions for CVI are developed.
Trial Registration Number:
ISRCTN13762177.