GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This paper describes the development of the GRIPP2 reporting checklists, which aim to improve the quality, transparency, and consistency of the international patient and public involvement (PPI) evidence base, to ensure that PPI practice is based on the best evidence

BackgroundWhile the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.ObjectiveTo develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2.MethodsThe EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.ResultsOne hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus.ConclusionsGRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.Electronic supplementary materialThe online version of this article (doi:10.1186/s40900-017-0062-2) contains supplementary material, which is available to authorized users.

BackgroundThe needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.ObjectivesTo examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.MethodsThe MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.ResultsThe conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).ConclusionsThis is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.Future workPriorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.Study registrationThis study is registered as PROSPERO CRD42012002223.FundingThe National Institute for Health Research Health Technology Assessment programme.

AIM The aim of this study was to develop a valid classification system to describe eating and drinking ability in people with cerebral palsy (CP), and to test its reliability. INTERPRETATION The EDACS provides a valid and reliable system for classifying eating and drinking performance of people with CP, for use in both clinical and research contexts. METHODPeople with cerebral palsy (CP) are affected by a range of activity limitations, attributed to non-progressive disturbances occurring in the developing fetal or infant brain. 1 The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.1 Impairments can limit the oral skills required for eating, drinking, and swallowing, with consequent risks of respiratory problems linked to direct aspiration of food and fluid into the lungs, 2-4 and inadequate nutrition and hydration. 5,6 Activity limitations also affect the ability to bring food and drink to the mouth. The degree to which a person with CP can control the posture and movement of the trunk and head has a direct impact on the efficient use of the muscle systems which support feeding and breathing. 7,8 The prevalence of eating and drinking difficulties in individuals with CP is unclear.9 Estimates depend on the definitions and tools used, ranging from 27% 10 to 90%. 11Prevalence has been proposed to be related to severity of motor impairment, 12 although eating and drinking problems have also been reported to occur in individuals at Gross Motor Function Classification System (GMFCS) levels I and II. 13,14 There is no agreement in the literature about the definition of the terms mild, moderate, and severe in relation to limitations to eating and drinking ability, or whether focus should be at the level of body functions and structures, activity, and/or participation. A recent systematic review identified the lack of a valid and reliable ordinal scale to classify the eating and drinking abilities of people with CP in both clinical and research contexts. 15The purpose of this study was to develop the Eating and Drinking Ability Classification System (EDACS) for people with CP, and evaluate its validity and reliability, making use of defined quality standards. Content validity is considered positive if there is a clear statement of purpose of the assessment and clear identification of the target population and concepts being measured. Content should be identified with input from the target population as well as experts and investigators. Reliability is considered satisfactory if the intraclass correlation coefficient (ICC; or weighted kappa) is at least 0.7 in a sample size of at least 50 patients. 16The EDACS is analogous and complementary to the GMFCS, 17 the Manual Ability Classification System (MACS) 18 or the Communication Function Classification System (CFCS).19 Thus, the intention is for the EDACS Stage 1: Drafting of the eating and drinking ability classification systemThe initial d...

Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research.