Where are persons with intellectual disabilities in medical research? A survey of published clinical trials

Feldman, Maurice A.; Bosett, J.; Collet, Christian; Burnham-Riosa, P.

doi:10.1111/jir.12091

Cited by 108 publications

(119 citation statements)

References 42 publications

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“…We thus fund ourselves with too little information to address the pressing disparities experienced by people with intellectual disability, alongside conditions that threaten justice. To address tenacious disparities and promote human rights, we must respectfully and safely include people with intellectual disability in population-specific and general population research (Brooker et al, 2014; Feldman, Bosett, Collet, & Burnham-Riosa, 2013; Iacono & Carling-Jenkins, 2012; Northway, 2014; Welch et al, 2015). Righting past wrongs requires attention to promoting research benefits desired by community members (Dresser, 2014); importantly, like the general population, the prospect of direct and/or indirect benefits motivates adults with intellectual disability to participate in research (McDonald, Kidney, & Patka, 2012).…”

mentioning

confidence: 99%

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

McDonald¹,

Conroy²,

Olick³

2016

Intellectual and Developmental Disabilities

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Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits, and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and Institutional Review Board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

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mentioning

confidence: 99%

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

McDonald¹,

Conroy²,

Olick³

2016

Intellectual and Developmental Disabilities

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“…Considerando además sus perfiles particulares de salud, es de esperar que tampoco reaccionen a los tratamientos de la misma forma que las personas sin TDI. 40 En general, los médicos carecen de formación sobre el cuidado y la atención de las personas con discapacidad, condición que puede comprometer la salud de este tipo de pacientes y contribuir a las disparidades en su atención. 41 Tener una información fiable de la realidad sanitaria es esencial para identificar las disparidades de salud, pero, en las encuestas de salud, las personas con TDI no suelen estar representadas.…”

Section: Atención Sanitariaunclassified

Nuevas consideraciones sobre la salud de las personas con trastornos del desarrollo intelectual

et al. 2017

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La literatura reciente indica que las personas con trastornos del desarrollo intelectual (TDI) presentan diferencias respecto de la población general en cuanto a la prevalencia de determinadas enfermedades y a la atención sanitaria que reciben. El conocimiento actual con base en la evidencia es aún muy escaso en países no anglosajones. Los proyectos europeos POMONA-I y POMONA-II tenían el objetivo de recoger información sobre el estado de salud de las personas con TDI en Europa. Actualmente, el proyecto POMONAESP en España pretende recoger dicha información en una muestra amplia y representativa de personas con TDI. También se están llevando a cabo otros estudios sobre la necesidad de contar con servicios especializados y sobre la formación que reciben los profesionales sanitarios sobre TDI. En este artículo se revisan las últimas evidencias sobre la salud de las personas con TDI y se exponen las principales actividades de investigación y asistencia sanitaria sobre este tema.

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“…12 19 There are modifications and adaptations that can be made to study designs and procedures to minimise obstacles including accessible information materials (eg, easy-read formats were successfully used in WIELD-see online supplementary material), simplified consent procedures, modified procedures to allow support from carers and simplified data collection materials. 19 People with learning disabilities are positive about participating in research and highlight the importance of researchers understanding their experiences and opinions. 52 Two key factors in this study facilitated successful recruitment and high levels of acceptability of the design.…”

Section: Research In Contextmentioning

confidence: 99%

“…People with learning disabilities are often excluded from clinical trials19 resulting in a weak evidence base for effective treatment and services for this population. This is particularly evident in epilepsy research,12 illustrated by a recent review of service responses for epilepsy in learning disabilities which identified no evaluations using randomisation or a matched comparison group 15.…”

Section: Introductionmentioning

confidence: 99%

“…16 However, this group continue to experience poor access to diagnostic investigations and specialist services; access to services with appropriate expertise appears to be highly dependent on location. 7 15 17 18 People with learning disabilities are often excluded from clinical trials 19 resulting in a weak evidence base for effective treatment and services for this population. This is particularly evident in epilepsy research, 12 illustrated by a recent review of service responses for epilepsy in learning disabilities which identified no evaluations using randomisation or a matched comparison group.…”

Section: Introductionmentioning

confidence: 99%

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Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial

et al. 2016

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ObjectiveTo investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities.Trial designA randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio.SettingEpilepsy clinics in 1 English National Health Service (NHS) Trust.ParticipantsPatients with learning disabilities and epilepsy who had: a seizure within the past 12 months, meaningful communication and a carer with sufficient proficiency in English.InterventionParticipants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20 weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study.Outcome measures7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness.OutcomeThe recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20 weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis.ConclusionsAll feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial.Trial registration numberISRCTN80067039.

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Where are persons with intellectual disabilities in medical research? A survey of published clinical trials

Abstract: The findings highlight the exclusion of persons with ID in medical research. Efforts are needed to increase inclusion through research policy initiatives and education.

Cited by 108 publications

References 42 publications

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

Nuevas consideraciones sobre la salud de las personas con trastornos del desarrollo intelectual

Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial

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