ABSTRACT
Objective: This review aims to examine the state of the evidence for interprofessional team-based primary health care for adults with intellectual and developmental disabilities.
Introduction: Adults with intellectual and developmental disabilities have complex health needs, as well as experience health service inequities. Interprofessional primary healthcare teams offer access to comprehensive primary health care and are recommended as an approach to improve the health of this population. At present, limited information is available regarding what services interprofessional primary healthcare teams provide and how services are evaluated specific to the care of adults with intellectual and developmental disabilities.
Inclusion criteria: This review will consider all studies that reference individuals with intellectual and developmental disabilities who are 18 years and over. It will consider all studies that refer to interprofessional healthcare provision within a primary healthcare team context. Interprofessional care is the term that will be used to describe services provided by interprofessional health providers (e.g. nurses, dietitians, social workers) in these teams. Work completed by physicians and nurses within traditional general practices will be excluded.
Methods: This review will be conducted according to the JBI methodology for scoping reviews. It will consider quantitative, qualitative and mixed methods study designs for inclusion. In addition, systematic reviews, program descriptions, clinical reviews and opinion papers will be considered. The review will consider all studies published since 2000 in English or French. All duplicates will be removed from identified citations. A data extraction tool will assist reviewers to identify and synthesize findings from selected papers.
Article Content
Introduction
Intellectual and developmental disabilities (IDDs) impact 1-2% of the global population1,2 and refer to a broad range of developmental conditions associated with lifelong challenges in cognitive and/or adaptive functioning.3 Many terms have been used synonymously to describe this group of conditions including: intellectual disability, developmental disability, learning disability and mental retardation.4 Intellectual and developmental disability is the term now recommended by key international groups5,6 and will be used throughout this review.
Adults with IDD are among the most vulnerable citizens in the world, and consequently have a greater need for healthcare resources compared to the general population.7,8 In Ontario, Canada, more than one in three adults with IDD have been identified as high-cost health service users.9 One difference contributing to healthcare utilization for this group, as compared to the general population, is a higher prevalence of mental and physical health conditions.10,11 Reviews from Canada, the United States (US), Australia and the United Kingdom (UK) identify that adults with IDD are more likely to develop chronic conditions including congestive heart failure, chronic obstructive pulmonary disease, diabetes and mental illness than people without IDD.8,12,13 Furthermore, Beange et al.14 note that in the US, adults with IDD have an average of five medical conditions, of which half are not identified or are poorly managed. This is echoed in the UK where high levels of unmet physical and mental health needs were identified by general physicians completing annual health checks.12 It is expected that healthcare utilization will continue to rise as individuals with IDD live longer and the risk of multimorbidity increases.15
Health care for this population remains largely unorganized and challenging to navigate, resulting in ongoing health inequities.16 Barriers to health care include insufficient training of healthcare professionals, communication challenges, stigma and difficulty managing financial reimbursement systems.16-18 Barriers result in ineffective monitoring of preventable conditions and missed opportunities to promote health and well-being.19 Adults with IDD remain underserved, particularly in mental and oral health, as well as in preventive screening for testicular, breast and cervical health.16 In addition, adults with IDD are more likely to be hospitalized for conditions (e.g. asthma, diabetes) that should be managed through outpatient services, and high hospitalization rates may be indicative of poor access to quality primary health care (PHC).12,20,21
The delivery of quality PHC is critical; as the World Health Organization notes, PHC can meet 80-90% of an individual's health needs over his or her lifespan.22 As the main point of contact with the health system, PHC providers offer screening, ongoing management support and/or assistance with referrals to specialists.23 PHC services are becoming increasingly comprehensive to address global health trends, such as aging and chronic disease, as well as meet the needs of complex or underserved populations.24 Interprofessional, team-based PHC practice models have gained traction over the last decade25 and have been recommended as an approach to meet the needs of adults with IDD.26,27 Team-based models embed interprofessional health providers, such as care coordinators, nurses, social workers and dietitians, in PHC practices to increase access to services and programs of care.28,29 Interprofessional health providers deliver a range of interventions including screening, care coordination, health promotion and chronic disease management.30 Evidence from Canada and the US indicates that these models have the potential to improve quality of care, increase patient and family satisfaction, decrease hospitalization, reduce emergency room use and lead to better health outcomes in general.26,29,31,32 Globally, examples of interprofessional team-based PHC models currently in use include community health centers, family health teams, health homes and patient-centered medical homes.28,30,32-34
This review aims to examine the state of the evidence for interprofessional team-based PHC and adults with IDD. A preliminary search of the literature through MEDLINE, CINAHL, the JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews and Epistemonikos found limited information on interprofessional team-based PHC and adults with IDD. To date, a small number of systematic reviews have been completed that explore PHC for adults with IDD,35-37 and only one on the impact of interventions at the health service/organizational level.38 A systematic review by Balogh et al.38 examined the effects of healthcare organizational interventions for persons with IDD. Although the review did not specifically focus on interprofessional PHC, this group studied organizational interventions such as multidisciplinary teams, formal integration of services, and revision of professional roles, which are relevant to our focus on team-based PHC. Seven studies met the inclusion criteria. The majority of the studies investigated the impact of organizational interventions on the mental health of adults with IDD, while no studies assessed physical health conditions. The authors could not make conclusive recommendations for the organization of healthcare services based on the available evidence.
A systematic review by Byrne et al.35 looked at PHC interventions targeting health promotion and disease prevention of adults with IDD. This review of five studies found that health checks were the only intervention to improve health promotion and secondary prevention outcomes for this population. As of the date of this protocol, there is limited understanding regarding which interprofessional team-based PHC services individuals with IDD are accessing. There are also no formal reviews investigating the evidence for interprofessional team-based PHC services for this population, despite recommendations for the approach.
The lack of understanding of how these interprofessional team-based PHC service models are specifically impacting adults with IDD is concerning. Given the state of the evidence, there is a necessity for system-level PHC research for this population39 that includes a better understanding of interprofessional team-based approaches.8 The objective of this scoping review is to identify the breadth and nature of the current evidence on interprofessional team-based PHC for adults with IDD, as well as determine the gaps.
Review question
i. What are the aims and characteristics (i.e. type, delivery mode and duration, providers) of interprofessional team-based PHC services for adults with IDD?
ii. What types of health or health service outcomes have been reported in the literature relating to the implementation of interprofessional team-based PHC interventions for adults with IDD?
iii. What evidence gaps in interprofessional PHC for adults with IDD can be identified?
Inclusion criteria
Participants
This review will consider studies with individuals 18 years and over with an intellectual and/or developmental disability. Intellectual disability is characterized by impairment in cognitive functioning, as well as challenges in adaptive behaviors and skill development prior to 18 years of age.5 There is known heterogeneity within the IDD population, with 85% of individuals functioning in the mild range of intellectual disability, 10% in moderate, 4% in severe and 2% in profound levels.1 Developmental disability, typically diagnosed before 22 years of age, is a larger umbrella term that is inclusive of intellectual disabilities and is characterized by the presence of a chronic disability due to a mental and/or physical impairment that substantially impacts adaptive skills and functional performance in everyday activities of daily living.5 Individuals may also have concurrent physical, behavioral or mental health conditions. Given the nature of this review, formal diagnosis at the patient level is not required, and papers referencing individuals along the spectrum of cognitive and adaptive functioning will be included. Studies on children and adolescents with intellectual and developmental disabilities will be excluded as healthcare services are typically different.38
Concept
Interprofessional care will be the term used to describe the provision of PHC services by interprofessional health providers. The term will be used to capture all studies that include interventions by interprofessional health providers who work in team-based PHC contexts. Professions could include, but are not limited to, nurse practitioners, registered nurses, registered practical nurses, physician assistants, registered dietitians, social workers, mental health workers, pharmacists, occupational therapists, physiotherapists, psychologists, chiropodists, respiratory therapists, health education workers and case managers.40 Studies that refer solely to the work of a doctor and a nurse in a traditional PHC practice context will be excluded.
Context
The context for this study is PHC and will be defined as "the first level of contact of individuals, the family and community with [a] national health system bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process".41(para.6) Primary healthcare models will be the term used to describe the organization of PHC services.
Types of sources
This scoping review will consider both experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies and interrupted time-series studies. In addition, analytical observational studies including prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies will be considered for inclusion. This review will also consider descriptive observational study designs including case series, individual case reports and descriptive cross-sectional studies for inclusion.
Qualitative studies including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research and feminist research will be considered. In addition, systematic reviews that meet the inclusion criteria will also be considered. Text and opinion papers will also be considered for inclusion in this scoping review.
Studies written in English or French and published since 2000 will be included, as it reflects the beginning of the most current period of PHC reform.42-44
Methods
The proposed scoping review will be conducted in accordance with JBI methodology.45
Search strategy
The search strategy aims to find both published and unpublished studies. An initial limited search of MEDLINE has been undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms applied to relevant articles. This informed the development of a search strategy which will be tailored for each information source. Full search strategies for MEDLINE and CINAHL are detailed in Appendix I. The reference lists of all included articles will be screened for additional studies.
Information sources
Databases will be searched using both OVID and EBSCO platforms (CINAHL). Databases will include AMED, CINAHL, Embase, MEDLINE, Ovid EMCARE, Joanna Briggs Institute EBP Database, Cochrane Library, and Global Health.
The search for unpublished studies will include Custom Google Scholar Search, Grey Literature Report, and OpenGrey.
Hand searches of key paper reference lists will be completed to identify any additional papers. The primary author will also contact key authors in the field and search professional organization websites.
Study selection
Following the search, all identified citations will be collated, deduplicated and uploaded into Covidence (Covidence, Melbourne, Australia) by the primary author (NB). Titles and abstracts will then be screened by two independent reviewers (JD, EW) for assessment against the inclusion criteria for the review. A final author (NB) will decide on any conflicts in the title and abstract review. Studies that may meet the inclusion criteria will be retrieved in full and their details imported into JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; Joanna Briggs Institute, Adelaide, Australia). The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full-text studies that do not meet the inclusion criteria will be excluded, and reasons for exclusion will be provided in an appendix in the final scoping review report. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.46 Any disagreements that arise between the reviewers will be resolved through discussion or with a fourth reviewer (CD).
Data extraction
Data will be extracted from papers included in the scoping review by three primary reviewers (NB, JD, EW) using a data extraction tool developed by the reviewers. A fifth reviewer (LU) will be engaged if French language translation is required. This reviewer (LU) will extract French language research findings and translate into English for the master data extraction sheet. Data extracted will include specific details about the population, concept, context, study methods and key findings relevant to the review objective. A draft charting table is provided (see Appendix II). The draft data extraction tool will be modified and revised as necessary during the process of extracting data from each included study. Modifications will be detailed in the full scoping review report. Any disagreements that arise between the reviewers will be resolved through discussion, or with the fourth reviewer (CD). Authors of papers will be contacted to request missing or additional data, where required.
Data presentation
The extracted data will be presented in diagrammatic and tabular form in a manner that aligns with the objective of this scoping review. A narrative summary will accompany the tabulated and/or charted results and will describe how the results relate to the reviews objective and questions.
Acknowledgments
This review will contribute towards the primary author's doctoral degree (NB). The authors acknowledge the assistance of Dr. Rosemary Lysaght, Queen's University, and Dr. Christina Godfrey, Queen's University, for their assistance with this protocol.
Appendix I: Search strategy
The initial search has been completed using Boolean combinations related to disabled persons, mentally disabled persons, intellectual disability, learning (disability or disorder), neurodevelopmental disorder (combined with OR) and patient care team, interprofessional, multidisciplinary, team-based (care or practice) (combined with OR) and primary health care, primary care, person care (combined with OR).
Ovid MEDLINE Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Ovid MEDLINE Daily, Ovid MEDLINE and Versions <1946 to July 05, 2018>
CINAHL (EBSCOhost)
Appendix II: Data extraction tool
References
1. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: A meta-analysis of population-based studies. Res Dev Disabil 2011; 32 (2):419-436. [Context Link]
2. McKenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: Current trends and issues. Curr Dev Disord Reports 2016; 3 (2):104-115. [Context Link]
3. Daaleman TP. Special population: Adults with intellectual and developmental disabilities. In: Daaleman TP, Helton MR, (Editors). Chronic illness care principles and practice. Cham, Switzerland: Springer; 2018:319-29 [cited 24 September 2018]. Available from: https://link.springer.com/chapter/10.1007/978-3-319-71812-5_26. [Context Link]
4. World Health Organization. Project Atlas: Global Resource for Persons with Intellectual Disability [Internet]. Geneva: World Health Organization; 2007. [Context Link]
5. American Association on Intellectual and Developmental Disabilities. Definition of intellectual disability [Internet]. Washington: American Association on Intellectual and Developmental Disabilities [cited 2018 Sep 24]. Available from: http://aaidd.org/intellectual-disability/definition#.WKyO63_V8s4[Context Link]
6. International Association for the Scientific Study of Intellectual and Developmental Disabilities. About IASSIDD [Internet]. International Association on Intellectual and Developmental Disabilities [cited on 2018 Sep 24]. Available from: https://www.iassidd.org/[Context Link]
7. Krahn GL, Fox MH. Health disparities of adults with intellectual disabilities: What do we know? What do we do? J Appl Res Intellect Disabil 2014; 27 (5):431-446. [Context Link]
8. Lunsky Y, Klein-Geltink J, Yates E. Atlas on the primary care of adults with developmental disabilities in Ontario [Internet]. 2013 [cited 2018 Sep 28]. Available from: http://www.ices.on.ca/Publications/Atlases-and-Reports/2013/Atlas-on-Development[Context Link]
9. Lunsky Y, De Oliveira C, Wilton A, Wodchis W. High health care costs among adults with intellectual and developmental disabilities: A population-based study. J Intellect Disabil Res 2019; 63 (2):124-137. [Context Link]
10. Anderson LL, Humphries K, McDermott S, Marks B, Sisarak J, Larson S. The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellect Dev Disabil 2013; 51 (5):385-398. [Context Link]
11. Haveman M, Heller T, Lee L, Maaskant M, Shooshtari S, Strydom A. Major health risks in aging persons with intellectual disabilities: An overview of recent studies. J Policy Pract Intellect Disabil 2010; 7 (1):59-69. [Context Link]
12. Emerson E, Baines S, Allerton L, Welch V. Health inequalities & people with learning disabilities in the UK [Internet]. 2012 [cited 2018 Sep 29]. Available from: https://www.basw.co.uk/system/files/resources/basw_14846-4_0.pdf[Context Link]
13. Havercamp SM, Scott HM. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disabil Health J 2015; 8 (2):165-172. [Context Link]
14. Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: A population study. Am J Ment Retard 1995; 99 (6):595-604. [Context Link]
15. Hermans H, Evenhuis HM. Multimorbidity in older adults with intellectual disabilities. Res Dev Disabil 2014; 35 (4):776-783. [Context Link]
16. Ervin DA, Hennen B, Merrick J, Morad M. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health 2014; 2 (83):1-8. [Context Link]
17. National Council on Disability. The current state of health care for people with disabilities [Internet]. 2009 [cited 2018 Sep 28]. Available from: http://eric.ed.gov/ERICWebPortal/recordDetail?accno=ED507726[Context Link]
18. Pelleboer-Gunnink HA, Van Oorsouw WMWJ, Van Weeghel J, Embregts PJCM. Mainstream health professionals' stigmatising attitudes towards people with intellectual disabilities: A systematic review. J Intellect Disabil Res 2017; 61 (5):411-434. [Context Link]
19. Office of the Surgeon General, National Institute of Child Health, Human Development, Center for Disease Control, Prevention. Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation [Internet]. Washington: Department of Health and Human Services; 2002. [Context Link]
20. Balogh R, Brownell M, Ouellette-Kuntz H, Colantonio A. Hospitalisation rates for ambulatory care sensitive conditions for persons with and without an intellectual disability-a population perspective. J Intellect Disabil Res 2010; 54 (9):820-832. [Context Link]
21. Dunn K, Hughes-McCormack L, Cooper S-A. Hospital admissions for physical health conditions for people with intellectual disabilities: Systematic review. J Appl Res Intellect Disabil 2018; 31: (Suppl 1): 1-10. [Context Link]
22. World Health Organization. Primary health care: Now more than ever [Internet]. 2008 [cited 2018 Sep 28]; World Health Organization. Available from: http://www.who.int/whr/2008/whr08_en.pdf[Context Link]
23. Starfield B, Shi L, Macinko J. Contribution of primary care to health systems and health. Milbank Q 2005; 83 (3):457-502. [Context Link]
24. De Maeseneer J, Moosa S, Pongsupap Y, Kaufman A, Navarro V, Muntaner C. Primary health care in a changing world. Br J Gen Pract 2008; 58 (556):806-809. i-ii. [Context Link]
25. Naccarella L, Greenstock LN, Brooks PM. A framework to support team-based models of primary care within the Australian health care system. Med J Aust 2013; 199 (5):S22-S25. [Context Link]
26. Sullivan WF, Diepstra H, Heng J, Ally S, Bradley E, Casson I, et al. Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Can Fam Physician 2018; 64 (4):254-279. [Context Link]
27. Royal College of General Practitioners. Learning disabilities [Internet]. London: Royal College of General Practitioners; 2018. [Context Link]
28. van den Berk-Clark C, Doucette E, Rottnek F, Manard W, Prada MA, Hughes R, et al. Do patient-centered medical homes improve health behaviors, outcomes, and experiences of low-income patients? A systematic review and meta-analysis. Health Serv Res 2018; 53 (3):1777-1798. [Context Link]
29. Khan S, McIntosh C, Sanmartin C, Watson D, Leeb K. Primary health care teams and their impact on processes and outcomes of care [Internet]. 2008 [cited 2018 Sep 26]. Available from: http://publications.gc.ca/collections/collection_2008/statcan/82-622-X/82-622-XI[Context Link]
30. Ministry of Health and Long-Term Care. Family health teams [Internet]. 2016 [cited 2018 Sep 26]. Available from: http://www.health.gov.on.ca/en/pro/programs/fht/[Context Link]
31. Weedon D, Carbone P, Bilder D, O'Brien S, Dorius J. Building a person-centered medical home: Lessons from a program for people with developmental disabilities. J Health Care Poor Underserved 2012; 23 (4):1600-1608. [Context Link]
32. Grier L. Rubin IL, Merrick J, Greydanus DEPD. Medical home. Springer, Health care for people with intellectual and developmental disabilities across the lifespan [Internet]. Switzerland: 2016. [Context Link]
33. Health Force Ontario. Family medicine compensation and practice models in Ontario [Internet]. 2017, Jun 26 [cited 2018 Sep 21] Available from: http://www.healthforceontario.ca/UserFiles/file/PracticeOntario/FM%20Compensatio[Context Link]
34. Hoff T, Weller W, DePuccio M. The patient-centered medical home. Med Care Res Rev 2012; 69 (6):619-644. [Context Link]
35. Byrne JH, Lennox NG, Ware RS. Systematic review and meta-analysis of primary healthcare interventions on health actions in people with intellectual disability. J Intellect Dev Disabil 2016; 41 (1):66-74. [Context Link]
36. Robertson J, Hatton C, Emerson E, Baines S. The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence. Res Dev Disabil 2014; 35 (10):2450-2462. [Context Link]
37. Robertson J, Roberts H, Emerson E, Turner S, Greig R. The impact of health checks for people with intellectual disabilities: A systematic review of evidence. J Intellect Disabil Res 2011; 55 (11):1009-1019. [Context Link]
38. Balogh R, McMorris CA, Lunsky Y, Ouellette-Kuntz H, Bourne L, Colantonio A, et al. Organising healthcare services for persons with an intellectual disability. Cochrane Database Syst Rev 2016; (4): CD007492. [Context Link]
39. Lennox N, Van Driel ML, van Dooren K. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda. J Appl Res Intellect Disabil 2015; 28 (1):33-42. [Context Link]
40. Government of Ontario. Ontario boosting access to primary care for people across the province [Internet]. 2017 [cited 2018 Sep 27]. Available from: https://news.ontario.ca/mohltc/en/2017/05/ontario-boosting-access-to-primary-car[Context Link]
41. World Health Organization. Declaration of Alma Ata. [Internet]. 1978 Sep [cited 2018 Sep 19]. Available from: http://www.who.int/publications/almaata_declaration_en.pdf?ua=1[Context Link]
42. Marchildon GP, Hutchison B. Primary care in Ontario, Canada: New proposals after 15 years of reform. Health Policy 2016; 120 (7):732-738. [Context Link]
43. Institute of Medicine (US). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press; 2001. [Context Link]
44. Department of Health (UK). Valuing people: A new strategy for learning disability for the 21st century: a white paper [Internet]. 2001 [cited 2019 Jan 16]. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attac[Context Link]
45. Peters MDJ, Godfrey C, McInerney P, Baldini Soares C, Khahil H, Parker D. Chapter 11: Scoping reviews. In: Aromataris E, Munn Z, (Editors). Joanna Briggs Institute Reviewer's Manual [Internet]. Adelaide: Joanna Briggs Institute; 2017. Available from: https://reviewersmanual.joannabriggs.org/[Context Link]
46. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Ann Intern Med 2009; 151 (4):264-269. [Context Link]