Aim The aim of this study was to develop, systematically, a consensus‐based definition for ‘neurodisability’ that is meaningful to health professionals and parents of children with neurological conditions. Method A multidisciplinary group of health professionals was recruited through child development teams and professional societies in the UK; several parents of children with neurological conditions worked with the research team. Professionals participated in three rounds of a Delphi survey. Participants rated their agreement with a proposed definition in each round, and feedback was used to refine the definition. Finally, a perspective was sought from international experts. Results Responses to the three rounds were as follows: round 1, 245 out of 290 (84.4%); round 2, 242 out of 300 (80.6%); and round 3, 237 out of 297 (79.7%). Agreement with the proposed definition was extremely high in every round (89.0%, 90.1%, and 93.6% respectively). The final version of the definition was widely endorsed among professionals, parents, and a small number of international colleagues. The final definition is as follows: ‘Neurodisability describes a group of congenital or acquired long‐term conditions that are attributed to impairment of the brain and/or neuromuscular system and create functional limitations. A specific diagnosis may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour'. Interpretation An agreed definition of neurodisability will be useful for conducting research or clinical evaluations with people affected by neurological problems.

BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric performance using English-language questionnaires. Studies were appraised for methodological quality and psychometric performance was appraised using standard criteria. (ii) Focus groups and interviews with children and young people with neurodisability, and separately with parents, sought to identify important outcomes of NHS care, and their feedback on example PROM questionnaires. (iii) An online Delphi survey was conducted with a multidisciplinary sample of health professionals to seek agreement on appropriate NHS outcomes. In addition, we convened a consensus meeting with a small nominal group of young people, parents and professionals; the group sought agreement on a core set of important health outcomes.ResultsFrom the systematic review, we identified 126 papers that reported eligible evidence regarding the psychometric performance of 25 PROMs. Evidence of psychometric robustness was more favourable for a small number of PROMs: KIDSCREEN (generic), DISABKIDS (chronic-generic) and Child Health Utility 9D (preference-based measure). The Pediatric Quality of Life Inventory and KINDL offer both self-report and a proxy report version for a range of age bands, but evidence of their psychometric performance was weaker. Evidence was lacking in one or more respects for all candidate PROMs, in both general populations and those with neurodisability. Proxy reporting was found generally to be poorly correlated with self-report. Focus groups and interviews included 54 children and young people, and 53 parents. The more important health outcomes were felt to be communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, parents of children with intellectual impairment identified behaviour, toileting and safety as important outcomes. Participants suggested problems with the face validity of example PROM questionnaires for measuring NHS care. In the Delphi survey, 276 clinicians from a wide range of professions contributed to at least one of four rounds. Professionals rated pain, hearing, seeing, sleep, toileting, mobility and communication as key goals for the NHS but also identified treating neurological symptoms as important. Professionals in the Delphi survey and parents working with the research team agreed a proposed definition for neurodisability. The consensus meeting confirmed overlap between the outcomes identified as important by young people, parents and professionals, but not complete agreement.ConclusionsThere was agreement between young people, parents and professionals regarding a core suite of more important health outcomes: communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety were identified as important by parents. This research suggests that it would be appropriate to measure these constructs using PROMs to assess health care. None of the candidate PROMs in the review adequately captures all of the identified constructs, and there is inadequate evidence that candidate PROMs are psychometrically robust for use across children with neurodisability. Further consultation with young people, families and professionals is warranted to support the use of PROMs to measure NHS outcomes. Research to test potential PROMs with different age groups and conditions would be valuable.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

What ways of thinking and concrete strategies can assist qualitative health researchers to transition their research practice to online environments? We propose that researchers should foreground inclusion when designing online qualitative research, and suggest ethical, technological and social adaptations required to move data collection online. Existing research shows that this move can aid in meeting recruitment targets, but can also reduce the richness of the data generated, as well as how much participants enjoy participating, and the ability to achieve consensus in groups. Mindful and consultative choices are required to prevent these problems. To adapt to ethical challenges, researchers should especially consider participant privacy, and ways to build rapport and show appropriate care for participants, including protocols for dealing with distress or disengagement, managing data, and supporting consent. To adapt to technological challenges, research plans should choose between online modalities and platforms based on a clear understanding of their particular affordances and the implications of these. Finally, successful research in virtual social environments requires new protocols for engagement before data collection, attention to group numbers and dynamics, altered moderator teams and roles, and new logistical tasks for researchers. The increasing centrality of online environments to everyday life is driving traditional qualitative research methods to online environments and generating new qualitative research methods that respond to the particularities of online worlds. With strong design principles and attention to ethical, technical and social challenges, online methods can make a significant contribution to qualitative research in health.

BackgroundHealth services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients’ priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties.The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.MethodsRelevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health.ResultsA total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable.ConclusionsWe propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.

The Assessment of Living Skills and Resources (ALSAR), an innovative instrumental activities of daily living tool, systematically evaluates the accomplishment of 11 tasks by separately rating patient skill and resource levels for each task and combining these levels to determine risk. The ALSAR was administered to 75 elderly veterans in a home care program. It predicted change to more supportive living arrangements and a more structured living environment, nursing home placement, hospitalization, and death during the 6-month study period. The ALSAR has proven useful for interdisciplinary problem solving and treatment planning.