Table 1

Outcomes rated in rounds 1 and 2 of the Delphi survey of outcomes to include in a core outcome set for childhood CVI

RoundsOutcomeDescription given in surveyCOMET taxonomy domain
1&2Ability to see things at a distance of at least 3 metresFor example, looking at an eye chart with letters or pictures, with glasses if appropriate, visual acuityEye outcomes
1&2Ability to focus on near thingsFor example, toys, people’s faces, letters or pictures, with glasses if appropriateEye outcomes
1&2Ability to keep both eyes together on a near targetFor example, when reading, doing artwork, or using a computer or tabletEye outcomes
1&2Ability to recognise visual targetsFor example, in picture books or on worksheets, adapted as necessaryEye outcomes
1&2Ability to track moving objectsFor example, follow the movements of other children, or animals or cars or ballsEye outcomes
1&2Mental healthFor example, anxiety, depression, behavioural problems, self harmMental health including psychiatric problems
1&2Child’s Emotional well-beingFor example, child’s level of confidence, happiness etcEmotional functioning/well-being
1&2Child’s self-perceptionFor example, how child thinks of themselves, self-esteemEmotional functioning/well-being
1&2SleepSleeping during the night or at appropriate timesGeneral physiological/clinical
1&2Tiredness/fatigueFor example, during the day, not just at night; lack of stamina, whatever the causeGeneral physiological/clinical
1&2MobilityFor example, child able to move around their physical environment, including physical obstacles, within the limits of any motor impairment or disabilityPhysical functioning
1&2Self-careFor example, washing, feeding and dressing, both practical and social aspectsPhysical functioning
1&2IndependenceAble to go out and about and/or carry out activities of daily living appropriate to age and development, in and out of the homePhysical functioning
1&2SafetyAwareness of danger (physical and social), appropriate to age or development, in and out of the homePhysical functioning
1&2ToiletingAs appropriate to physical abilities, including physical and social aspectsPhysical functioning
1&2Route-findingFinding way around in the community and in both familiar and new settings, for example, schoolPhysical functioning
1&2CommunicationFor example, with family, friends and others; verbal and non-verbalSocial functioning
1&2Community and social lifeFor example, taking part in clubs, sport, parties, other leisure activities or entertainmentsSocial functioning
1&2BehaviourFor example, managing emotions at home, school and in the wider community, self regulationSocial functioning
1&2PlayAbility to play, be part of playful activities, on own or with othersSocial functioning
1&2LearningWhether at school or home-taught, learning and applying knowledge, attention and concentrationCognitive functioning
1&2Financial costsFor example, costs incurred by parents; working time lostSocietal/carer burden
1&2Family well-beingFor example, parental emotional well-being, family functioningSocietal/carer burden
2 onlyConsistency of visual performanceFor example, changes in ability to process visual information when tired, throughout the dayEye outcome
2 onlyFunctional 3D skillsFor example, making models in Lego, or craft modelling, doing jigsaw puzzles, dressing and feeding themselves, if appropriateEye outcomes
2 onlyAbility to see colour Eye outcomes
2 onlySensitivity to lightFor example, may need additional lighting or reduced lighting, or tinted glassesEye outcomes
2 onlyAbility to deal with crowded or cluttered sceneFor example, finding clothes, toys and people in cluttered or crowded spacesEye outcomes
2 onlyAbility to watch TV, films or run computer games Eye outcomes
2 onlyHearingBeing aware of soundsGeneral physiological/clinical
2 onlyAuditory understandingFor example, knowing the direction of soundGeneral physiological/clinical
2 onlyAppreciation/enjoyment of musicChild enjoys listening to/experiencing music in whatever formSocial functioning
2 onlyPainFor example, discomfort due to positioning, headaches or other sources of pain or discomfortGeneral physiological/clinical
2 onlyChild’s understanding of own needs and their conditionFor example, knowing how CVI and other comorbidities affect them and what helps or hinders their daily lives, including being aware of visual field lossEmotional functioning/well-being
2 onlyChild’s resilienceFor example, child uses appropriate coping mechanisms or strategies to manage CVI and other conditionsEmotional functioning/well-being
2 onlyReading or accessing books Cognitive functioning
2 onlyAbility to cope with moving environmentFor example, car travel, train travel, bus travelPhysical functioning
2 onlyEnvironmental adaptationsAppropriate adaptations available including: learning materials, support with travel and transportPhysical functioning
2 onlyEnvironmental adaptations are acceptable to the childChild can or will access/use environmental adaptations as provided, for example, learning materials, support with travel and transportPhysical functioning
2 onlyManaging in crowded environmentsFor example, in shops, cinemas, streetsSocial functioning
2 onlySocial life/relationshipsFor example, ability to make and sustain friendships and relationshipsSocial functioning
2 onlyGeneral healthSelf or proxy rated health, for example, 'how are you in yourself?'General physiological/clinical
2 onlyRelevant adults aware of CVITeachers, family etc know what CVI is and what helps the childSocial functioning

  • COMET, Core Outcome Measures in Effectiveness Trials; CVI, cerebral visual impairment; 3D, 3 dimensional; TV, television.