Towards developing an intervention to support periodic health checks for adults with intellectual and developmental disabilities: Striving for health equity.
BACKGROUND: Although the Canadian Consensus Guidelines for Primary Care of Adults with Intellectual and Developmental Disabilities recommends conducting periodic health checks in primary care, uptake is lacking. This study seeks to understand factors influencing the conduct of periodic health checks and identify what needs to change to increase them. METHOD: Qualitative data from five stakeholder groups (adults with intellectual and developmental disabilities, primary care providers, administrative staff, family, disability support workers) was guided by the Behaviour Change Wheel and the Theoretical Domains Framework to identify barriers and 'what needs to change' to support periodic health checks. RESULTS: Stakeholders (n = 41) voiced multiple barriers. A total of 31 common and 2 unique themes were identified plus 33 items 'needing to change'. CONCLUSION: Despite barriers, stakeholders saw merit in periodic health checks as a preventative and equitable healthcare offering for adults with intellectual and developmental disabilities. Results will inform future intervention development steps.
Atkins, L., Francis, J., Islam, R., O'Connor, D., Patey, A., Ivers, N., Foy, R., Duncan, E. M., Colquhoun, H., Grimshaw, J. M., Lawton, R., & Michie, S. (2017). A guide to using the theoretical domains framework of behaviour change to investigate implementation problems. Implement Science, 12(1), 77. https://doi.org/10.1186/s13012-017-0605-9
Breton, M., Lévesque, J. F., Pineault, R., & Hogg, W. (2011). Primary care reform: Can Quebec's family medicine group model benefit from the experience of Ontario's family health teams? Healthcare Policy, 7(2), e122-e135.
Brice, S., Rodgers, J., Ingham, B., Mason, D., Wilson, C., Freeston, M., Le Couteur, A., & Parr, J. R. (2021). The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: Findings from UK surveys. BMJ Open, 11(3), e043336. https://doi.org/10.1136/bmjopen-2020-043336
Buszewicz, M., Welch, C., Horsfall, L., Nazareth, I., Osborn, D., Hassiotis, A., Glover, G., Chauhan, U., Hoghton, M., Cooper, S. A., Moulster, G., Hithersay, R., Hunter, R., Heslop, P., Courtenay, K., & Strydom, A. (2014). Assessments of an incentivized scheme to provide annual health checks in primary care for adults with intellectual disability: A longitudinal cohort study. Lancet Psychiatry, 1, 522-530.
Cane, J., O'Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7, 37. https://doi.org/10.1186/1748-5908-7-37
Casson, I., Broda, T., Durbin, J., Gonzales, A., Green, L., Grier, E., Lunsky, Y., Selick, A., & Sue, K. (2018). Health checks for adults with intellectual and developmental disabilities in a family practice. Canadian Family Physician, 64(Suppl. 2), S44-S50.
Connell, L. E., Carey, R. N., de Bruin, M., Rothman, A. J., Johnston, M., Kelly, M. P., & Michie, S. (2019). Links between behavior change techniques and mechanisms of action: an expert consensus study. Annals of behavioral Medicine, 53(8), 708-720. https://doi.org/10.1093/abm/kay082
Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Alexander, J. A., & Lowery, J. C. (2009). Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science, 4, 50. https://doi.org/10.1186/1748-5908-4-50
Davies, J., Remington, A., Buckley, C., Crane, L., & Smalley, K. (2023). ‘It seems like a luxury to be able to offer that’ factors influencing the implementation of annual health checks for autistic people in England. Autism, 1-18. https://doi.org/10.1177/13623613231182011
Developmental Disability Primary Care Program. (2021). Surrey place. https://ddprimarycare.surreyplace.ca/.
Durbin, J., Selick, A., Casson, I., Green, L., Spassiani, N., Perry, A., & Lunsky, Y. (2016). Evaluating the implementation of health checks for adults with intellectual and developmental disabilities in primary care: The importance of organizational context. Intellectual and Developmental Disabilities, 54(2), 136-150.
Francis, J. J., Johnston, M., Robertson, C., Glidewell, L., Entwistle, V., Eccles, M. P., & Grimshaw, J. M. (2010). What is an adequate sample size? Operationalizing data saturation for theory-based interview studies. Psychology & Health, 25, 1229-1245.
Grier, L. (2016). Health care for people with intellectual and developmental disabilities across the lifespan (3rd ed., p. 289, 300). Springer.
Harris, P. A, Taylor, R., Thielke, R., Payne, J., Gonzalex, N., & Condle, J. G. (2009). Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377-378.
Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: A population-based study. Lancet, 383(9920), 889-895. https://doi.org/10.1016/S0140-6736(13)62026-7
Katz, A., Herpai, N., Smith, G., Aubrey-Bassler, K., Breton, M., Boivin, A., Hogg, W., Miedema, B., Pang, J., Wodchis, W. P., & Wong, S. T. (2017). Alignment of Canadian primary care with the patient medical home model: A QUALICO-PC study. Annals of Family Medicine, 15(3), 230-236. https://doi.org/10.1370/afm.2059
Lennox, N., Bain, C., Rey-Conde, T., Purdie, D., Bush, R., & Pandeya, N. (2007). Effects of a comprehensive health assessment program for Australia adults with intellectual disabilities: A cluster randomized trial. International Journal of Epidemiology, 36(1), 139-146.
Lennox, N., Ware, R., Bain, C., Taylor Gomez, M., & Cooper, S. A. (2011). Effects of health screening for adults with intellectual disability: A pooled analysis. British Journal of General Practice, 61(584), 193-196. https://doi.org/10.3399/bjgp11X561186
Lennox, N. G., Brolan, C. E., Dean, J., Ware, R. S., Boyle, F. M., Taylor Gomez, M., van Dooren, K., & Bain, C. (2013). General practitioners' views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability. Journal of Intellectual Disability Research, 57(10), 913-922. https://doi.org/10.1111/j.1365-2788.2012.01586.x
Lennox, N., van Driel, M., & van Dooren, K. (2015). Supporting primary healthcare professionals to care for people with intellectual disabilities: A research agenda. Journal of Applied Research in Intellectual Disabilities, 28, 33-42.
Leser, K. A., Pirie, P. L., Ferketich, A. K., Havercamp, S. M., & Wewers, M. E. (2014). The perceived role of direct support professionals in the health promotion efforts of adults with developmental disabilities receiving support services. Intellectual and Developmental Disabilities, 56, 40-55.
McNeil, K., Hennen, B., Joyce, M., & Marshall, E. G. (2021). Health check guidelines and billing for family physicians caring for adults with intellectual and developmental disabilities: Incentives to improve care. Canadian Family Physician, 67(7), e197-e201. https://doi.org/10.46747/cfp.6707e197
Michie, S., van Stralen, M., & West, R. (2011). The behaviour change wheel: A new method for characterizing and designing behaviour change interventions. Implementation Science, 6(1), 42.
Michie, S. A., & West, R. (2014). The behaviour change wheel; a guide to designing interventions. Silverback Publishing.
Ouellette-Kuntz, H., Cobigo, V., Balogh, R., Wilton, A., & Lunsky, Y. (2015). The uptake of secondary prevention by adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 28, 43-54.
Patients medical home: PMH in Nova Scotia. (2023). https://patientsmedicalhome.ca/pmh-in-canada/pmh-nova-scotia/
Patton, M. Q. (1999). Enhancing the quality and credibility of qualitative analysis. Health Services Research, 34(5 Pt 2), 1189-1208.
Pipan, M. (2012). Intellectual disability: Definition, classification, and Systems of Supports. Journal of Developmental & Behavioural Pediatrics, 33(5), 386.
Potvin, L. A., Fulford, C., Ouellette-Kuntz, H., & Cobigo, V. (2019). What adults with intellectual and developmental disabilities say they need to access annual health examinations: System navigation support and person-centred care. Canadian Family Physician, 65(Suppl. 1), S47-S52.
Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence. Research in Developmental Disabilities, 35(10), 2450-2462.
Selick, A., Durbin, J., Casson, I., Lee, J., & Lunsky, Y. (2018). Original qualitative research barriers and facilitators to improving health care for adults with intellectual and developmental disabilities: What do staff tell us? Health Promotion and Chronic Disease Prevention in Canada, 38(10), 349-357. https://doi.org/10.24095/hpcdp.38.10.01
Shady, K., Pillips, S., & Newman, S. (2022). Barriers and facilitators to health access in adults with intellectual and developmental disabilities and communication difficulties: An integrative review. Review Journal of Autism and Developmental Disorders, 30, 1-13. 10.1007%2Fs40489-022-00324-8
Shooshtari, S., Temple, B., Waldman, C., Abraham, S., Ouellette-Kuntz, H., & Lennox, N. (2016). Stakeholders' perspectives towards the use of the Comprehensive Health Assessment Program (CHAP) for adults with intellectual disabilities in Manitoba. Journal of Applied Research in Intellectual Disabilities, 30(4), 672-683. https://doi.org/10.1111/jar.12261
Smith, G., Ouellette-Kuntz, H., & Green, M. (2018). Health check guidelines and billing for family physicians caring for adults with intellectual and developmental disabilities: Incentives to improve care. Canadian Family Physician, 67, 3197-3201.
Stankiewicz E, Ouellette-Kuntz H, McIsaac M, Shooshtari S, Balogh R. (2018). Patterns of mortality among adults with intellectual and developmental disabilities in Ontario. Canadian Journal of Public Health. Dec; 109(5-6):866-872. https://doi.org/10.17269/s41997-018-0124-8.
Sullivan, W., Berg, J. M., Bradley, E., Cheetham, T., Denton, R., Heng, J., Hennen, B., Joyce, D., Kelly, M., Korossy, M., Lunsky, Y., McMillan, S., & Colloquium on Guidelines for the Primary Health Care of Adults with Developmental Disabilities. (2011). Primary Care of Adults with developmental disabilities, Canadian consensus guidelines. Canadian Family Physician, 57(5), 541-553.
Sullivan, W., Diepstra, H., Heng, J., Ally, S., Bradley, E., Casson, I., Hennen, B., Kelly, M., Korossy, M., McNeil, K., Abells, D., Amaria, K., Boyd, K., Gemmill, M., Grier, E., Kennie-Kaulbach, N., Ketchell, M., Ladouceur, J., Lepp, A., … Witherbee, S. (2018). Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Canadian Family Physician, 64(4), 254-279.
Tassé, M. J., Schalock, R., Thomson, J. R., & Wehmeyer M. (2005) Guidelines for interviewing people with disabilities: Supports Intensity Scale. https://www.aaidd.org/docs/default-source/sis-docs/sisguidelinesforinterviewing.pdf
The Patient Medical Home, College of Family Physicians of Canada. (2023). https://www.cfpc.ca/en/policy-innovation/health-policy-goverment-relations/the-patient-s-medical-home
United Nations Convention on the rights of persons with disabilities. (2006a). Article 2. United Nations https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-2-definitions.html
United Nations Convention on the rights of persons with disabilities. (2006b). Article 12. United Nations https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-12-equal-recognition-before-the-law.html
Walmsley, J. (2011). An investigation into the implementation of annual health checks for people with intellectual disabilities. Journal of Intellectual Disabilities, 15(3), 157-166.
Ware, R., & Lennox, N. (2016). Characteristics influencing attendance at a primary care health check for people with intellectual and developmental disability: An individual participant data meta-analysis. Research in Developmental Disabilities, 55, 235-241.
Wigham, S., Bourne, J., McKenzie, K., Rowlands, G., Petersen, K., & Hackett, S. (2022). Improving access to primary care and annual health checks for people who have a learning disability: A multistakeholder qualitative study. BMJ Open, 12, e065945. https://doi.org/10.1136/bmjopen-2022-065945
Wullink, M., Veldhuijzen, W., Lantman-de Valk, H. M., Metsemakers, J. F., & Dinant, G. J. (2009). Doctor-patient communication with people with intellectual disability-a qualitative study. BMC Family Practice, 10, 82. https://doi.org/10.1186/1471-2296-10-82
Zworth, M., Selick, A., Durbin, J., Casson, I., & Lunsky, Y. (2019). Improving care for adults with intellectual and developmental disabilities: Role of clerical staff. Canadian Family Physician, 65(Suppl 1), S8-S10.
