Research ArticlePractice

Primary care of adults with intellectual and developmental disabilities

2018 Canadian consensus guidelines

William F. Sullivan, Heidi Diepstra, John Heng, Shara Ally, Elspeth Bradley, Ian Casson, Brian Hennen, Maureen Kelly, Marika Korossy, Karen McNeil, Dara Abells, Khush Amaria, Kerry Boyd, Meg Gemmill, Elizabeth Grier, Natalie Kennie-Kaulbach, Mackenzie Ketchell, Jessica Ladouceur, Amanda Lepp, Yona Lunsky, Shirley McMillan, Ullanda Niel, Samantha Sacks, Sarah Shea, Katherine Stringer, Kyle Sue and Sandra Witherbee
Canadian Family Physician April 2018, 64 (4) 254-279;

Abstract

Objective To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD).

Methods Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations.

Recommendations Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning.

Conclusion As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers.

The following guidelines for the primary care of adults with intellectual and developmental disabilities (IDD) update those previously published in Canadian Family Physician.1 In these guidelines, IDD refers to various lifelong limitations in intellectual functioning and conceptual, social, or practical skills that emerge in persons before the age of 18 years. These limitations differ in severity and type among people with IDD and can vary during a person’s lifespan. Intellectual and developmental disabilities encompass intellectual disability, developmental disability, learning disability (as used in the United Kingdom), and autism spectrum disorder.2

Adults with IDD are patients that most family physicians have in their practices. As primary care providers, family physicians play a key role in promoting the health and well-being of these patients. People with IDD often have complex health care needs and factors affecting their health that can vary in kind, manifestation, or severity from others in the community. They require approaches to care and interventions that are adapted to their needs.

The revisions in the updated guidelines are based on feedback from users of the previous guidelines and on review and discussion of current knowledge by family physicians and other health professionals experienced in the primary care of adults with IDD. The approaches to care that are outlined in these guidelines can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning. References to clinical tools and other practical resources are incorporated to facilitate implementation.

Objective and scope of the guidelines

The updated guidelines aim to help family physicians and other providers of primary care to make informed decisions with their patients with IDD and patients’ caregivers. Their focus is on health issues that are specific to adults with IDD. These tend sometimes to be overlooked because they can vary from what is encountered in other patients.

As in previous guidelines, emphasis is placed on measures to avoid occurrence of health disorders (primary prevention) and to detect disorders early for effective intervention (secondary prevention). Some new guidelines also address monitoring the health of patients who are living with chronic physical or mental health conditions to mitigate symptoms and avoid additional complications (tertiary prevention). Adults with IDD experience high rates of chronic diseases.3 They might not have the skills and support needed for self-care.

These guidelines outline standards of care for which there is a good basis in current knowledge. Other factors, however, were considered for deciding whether a proposed action is “strongly recommended” or “recommended,” including availability and use of resources. Implementing some recommendations might entail flexibility in managing resources or enabling patients and caregivers to access resources in the community to which they are entitled. The latter might involve promoting better distribution of resources in the health care and social services systems. These are competencies associated with being a health advocate, one of the CanMEDS–Family Medicine roles of family physicians identified by the College of Family Physicians of Canada.4

Rationale for revising the guidelines

At colloquia held in 2016, 45 Canadian family physicians and other health professionals who use the 2011 guidelines suggested revisions and additional topics. Studies published since 2011 also prompted a review of the previous guidelines.

Rationale for method

Our method for updating the guidelines considered international efforts to improve the quality of clinical guidelines while making adaptations for addressing the primary care of adults with IDD. The 2011 guidelines used an evidence-based medicine (EBM) framework with no separate grading of strength of recommendations. To update our guidelines, this approach was revised. We classified and profiled the types of knowledge reviewed as empirical knowledge (derived from randomized controlled trials [RCTs] and observational studies), ecosystem knowledge (population-level data from studies of prevalence, environments, and health care systems), expert knowledge (from practitioners or professional bodies proposed with or without an explicit consensus process), and experiential knowledge (patient and caregiver perspectives). These various types of knowledge were not ranked hierarchically because they offer complementary insights, each contributing a different perspective necessary for making informed clinical judgments. We distinguished the strength of recommendations using a separate grading system that considered other factors such as the proportion of benefit relative to harm, preferences and values of patients and caregivers, and the availability and use of resources. This approach was adapted from that used by the Canadian Task Force on Preventive Health Care for its guidelines.

Underlying these methodologic changes is our view that, while the EBM framework widely used to develop guidelines is helpful for many patient groups, it has some limitations when developing guidelines for certain patient groups such as people with IDD.5 The EBM framework adopts a hierarchical ranking of the quality of evidence that places RCTs at the highest level of quality of evidence and expert opinion at the lowest. This grading system is problematic in developing guidelines for primary care of people with IDD for several reasons. First, very few RCTs involve participants with IDD. Recruiting such participants is difficult and often judged to be ethically inappropriate by research ethics boards.

Second, RCT design can be used most effectively when the number of relevant variables among participants is small. People with IDD, however, are a heterogeneous group of patients with different, sometimes rare, causes of their disabilities, a range of intellectual and adaptive functioning, and multiple comorbidities. These variations often affect health outcomes or response to interventions.

Third, RCTs are not designed to investigate the sorts of holistic interventions that adults with IDD require for comprehensive primary care. In such interventions, effects often interact and cannot be studied in isolation; nor can all outcomes of such interventions be quantified.

Fourth, as Greenhalgh and colleagues have argued, there are potential biases implicit in the EBM framework that run counter to a relational, person-centred approach to care, which is valued in family medicine and in the care of people with IDD.6 Qualitative studies eliciting patient and caregiver perspectives are important in such care.

Moreover, there has been a positive shift within family medicine from approaches to care based exclusively on the medical model of disability, which focuses on patients’ impairments, to approaches that incorporate insights from the social model of disability. The latter elucidates ways in which inappropriate environments, inadequate social supports, and systemic barriers also contribute to disability.7 An ecosystem perspective highlights these contextual factors that are likely to influence service use and patient outcomes in local settings for primary care of adults with IDD.

Finally, in the care of adults with IDD, the cumulative knowledge of expert clinicians who have extensive experience in such care and are aware of current knowledge is another valid and important basis for recommending interventions. The characterization of expert knowledge as “opinion” and its relegation to the lowest level of evidence quality in the EBM framework does not do justice to this valuable type of knowledge.

METHODS

Updating the guidelines involved a group of 45 primary care providers (family physicians, psychiatrists, nurses, and other health professionals) from urban and rural areas across Canada. They participated in a colloquium on February 24, 2016, and another on June 15 and 16, 2016. Participants were invited because they had extensive experience in the primary care of people with IDD. Many were involved in developing the previous guidelines. Before and after these colloquia, most attendees participated in smaller working groups. A health librarian experienced in the field of IDD conducted searches of electronic databases, books, and other publications on IDD between January 2010 and November 2017 (details on the search strategy are available from CFPlus*). Pertinent search results were entered in a bibliographic management system (RefWorks) accessible to members of the various working groups. The groups reviewed knowledge on specific topics assigned to them according to their respective areas of expertise. They also proposed wording for revising or adding to the previous guidelines for discussion at the June 2016 colloquium. A standard form was used to record the publications that the group members considered relevant for their revisions or additions. Leaders were designated to coordinate groups for each section of the guidelines.

After the June 2016 colloquium, a Colloquium Synthesis Group (CSG) and an editorial group were established. The latter was a subgroup of the former. The CSG consisted of 5 family physicians (W.F.S., I.C., B.H., E.G., K.M.), a psychiatrist (E.B.), 2 nurses (S.A., M. Kelly), an ethicist (J.H.), a librarian (M. Korossy), and a research associate (H.D.). Two additional external consultants with expertise in methods of guideline development provided advice. The CSG and editorial group worked in tandem to formulate the text of the guidelines based on discussions at the June 2016 colloquium. The CSG guided decisions regarding the systems employed for categorizing the types of knowledge and for distinguishing the strength of recommendations (Tables 1 and 2). Based on these decisions, the first authors of these guidelines (a family physician [W.F.S.] and a research associate [H.D.]) independently categorized the type of knowledge of publications that the working groups reviewed and proposed the grading of the strength of recommendations. The leaders designated for each section of the guidelines (4 family physicians [I.C., B.H., E.G., K.M.] and a psychiatrist [E.B.]) also separately ranked what they considered to be the most important recommendations to promote in any clinical practice and those recommendations that pertain to health issues that are most commonly overlooked in patients with IDD. Discrepancies were noted and all were then resolved by discussion. The final results were communicated to all the participants in the June 2016 colloquium for their approval.

View this table:
Table 1.

Types of knowledge: This table presents the types of knowledge and their definitions; blue and gray circles for each type of knowledge indicate different subtypes; blue indicates a stronger or especially relevant knowledge subtype for the recommendation compared with gray; open circles indicate that reviewed publications pertain to the guideline’s background (first guideline column).

View this table:
Table 2.

Strength of recommendations

RECOMMENDATIONS

What is new in the updated guidelines?

Most guidelines have been revised and new ones added. The updated guidelines begin with a new section on approaches to care. Feedback from users of the previous guidelines suggested that the quality of primary care experienced by adults with IDD is correlated not only with what their family physicians know medically but also how they relate to their patients and caregivers. These guidelines emphasize placing the person with IDD at the centre of communication, planning, and decisions regarding care. This might require more time than that allocated to the typical office visit, getting to know the patient as a person and the patient’s community, and engaging additional supports. The College of Family Physicians of Canada supports primary care that is person-centred, relational, and integrated.8,9 While these approaches to care apply to all patients, they apply especially to adults with IDD who often face challenges in having their health needs understood. They and their caregivers need to be given opportunities to share their perspectives.

Guideline 3 on capacity for informed consent was renamed capacity for decision making to place the focus less on assessment of intellectual functioning and more on enhancing communication with adults with IDD and assessing their need for accommodations and supports to contribute as much as possible to decisions affecting their health care.

The term behaviours that challenge (BTC) is adopted in these guidelines. This term situates such behaviour in the context of the interaction between people with IDD who have unique developmental needs and their environments and supports. Behaviours that challenge occur when the health, developmental, and personal needs of the individual with IDD might not be fully understood, where necessary supports are not available, when expectations might be inappropriate, and when needed environmental accommodations are not made. This entails a comprehensive and systematic approach to assessing the causes of BTC (eg, the HELP approach outlined in guideline 27).

A new guideline on life transitions (guideline 12) proposes preventive measures to mitigate the distressing effects on people with IDD of losses and changes they experience during these transitions and to prepare for a smooth transfer to new services and supports. Guidelines 27 and 28 emphasize screening for distressing life experiences that sometimes contribute to emerging BTC in adults with IDD or that might precipitate adjustment disorders in some patients if unaddressed.

The health risks and unwanted side effects associated with long-term use of certain medications or combinations of medications by adults with IDD are a concern that underlies several updated recommendations. Guidelines 27, 29, and 30 give advice on the appropriate use and standards for review of psychotropic medications.

To address gaps in the previous guidelines, new recommendations have been developed on care of families and other caregivers of patients with IDD (guideline 4), women’s gynecologic and reproductive health (guideline 19), and sleep problems (guideline 25).

In these updated guidelines, we worded recommendations as easy-to-understand actions that can be applied. Clinical tools and other practical resources are incorporated into the recommendations to aid guideline implementation. The top recommendations by clinicians in each section of the guidelines are highlighted. The central recommendations are those of performing a periodic comprehensive health assessment using adapted tools such as the Preventive Care Checklist Form,10,11 developing a health action plan, and using a comprehensive and systematic approach to assessing the causes of BTC.

The recommendations are presented in full in Table 3.8,10–333

View this table:
Table 3.

Canadian consensus guidelines on the primary care of adults with IDD: Recommendations with Embedded Imageare strongly recommended; the Embedded Image symbol indicates clinicians’ top recommendations; Embedded Image or Embedded Image indicates that reviewed publications pertain to the guideline background; blue indicates a stronger or especially relevant knowledge subtype for the recommendation compared with gray (see Tables 1 and 2).

Future dissemination and implementation

Future dissemination and implementation strategies involve education (eg, online learning modules, curricula), integration of the guidelines in electronic medical record systems, and developing guideline implementation tools in collaboration with stakeholders (eg, primary care providers, patients, caregivers).

Limitations and implications for improvement

The aim of these guidelines is to inform family physicians and other primary care providers of the most prevalent health issues of adults with IDD and optimal standards of care based on current knowledge. Any such guidelines, however, will inherently be limited in their application by the reality that adults with IDD are not a homogeneous group of patients and do not experience health disorders or respond to interventions in the same ways. The guidelines provide advice on reasonable standards of care in general. They are not intended to replace skilled clinical diagnoses or judgments regarding interventions based on discussions with patients and their caregivers.

To identify gaps in the 2011 guidelines and assess new knowledge, we drew on the expertise of family physicians and others who provide primary care to people with IDD at every stage of the updating process. There was not analogous involvement, however, of adults with IDD and their caregivers in this process. This limitation will be addressed in future updates.

Through profiling the range of types of knowledge for recommendations in the updated guidelines, we conclude that there is a need generally for more studies that elicit experiential knowledge from patients with IDD and their caregivers. There is also need for more studies contributing to knowledge of health ecosystems that affect the health and access to health care of adults with IDD. We hope that our approach of classifying and profiling types of knowledge in these guidelines will prompt greater interest and support for research in these areas.

Finally, as noted above, these updated guidelines outline optimal standards of care while indicating that the resources and supports required for following them are not readily available in some settings (eg, specialists who are knowledgeable about IDD, interprofessional teams or programs adapted to the needs of people with IDD). While advocacy to obtain such resources is encouraged, and advocacy is indeed one of the CanMEDS–Family Medicine roles, changes in practices and health systems take time and might not always be possible to achieve. Some of these updated guidelines propose alternative measures that can be considered while awaiting such resources.

Future updates

To keep these guidelines current, a comprehensive review will be conducted within 5 years of publication.

Conclusion

Adults with IDD have different and often more complex health needs and factors affecting their health than other patients do. As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. While they are familiar with common health issues that affect most patients in the community, they can also benefit from knowing what to attend to in their patients with IDD and how best to care for them. These updated guidelines are based on a review and synthesis of current knowledge by colleagues who are experienced in the care of people with IDD. They offer advice that is intended to support clinical decision making in an area of primary care in which they encounter high levels of complexity and ambiguity and in which few comprehensive guidelines by family physicians exist. Papers in a special supplement to Canadian Family Physician elaborate on some of the recommendations.334

Acknowledgement

The development of these guidelines is supported financially by the Ontario Ministry of Community and Social Services, the Ontario Ministry of Health and Long-Term Care, and Surrey Place Centre, which is affiliated with the University of Toronto. We thank the following for their assistance and contributions: Tom Archer, Violet Atkinson, Rob Balogh, Camille Bigras, Terry Broda, Brenda Chang, Cathy Deagle-Gammon, Jim Fagan, Cynthia Forster-Gibson, Angela Gonzales, Terri Hewitt, Barry Isaacs, Sumaiya Karim, Andrea Lauzon, Alvin Loh, Sue Lukersmith, Tammy Roode, Luis Salvador-Carulla, Amanda Sawyer, Anupam Thakur, Janet Vogt, Kevin Pottie, Laurie Green, Vikram Dua, Sue Ehler, Donna Lee, Denise Cahill, and Thomas Cheetham.

Notes

Editor’s key points

  • ▸ Adults with intellectual and developmental disabilities (IDD) have preventable health conditions that can vary from those of other patients.

  • ▸ Primary care of adults with IDD is often complex and requires knowledge from various sources. These updated guidelines categorize complementary types of knowledge (empirical, ecosystem, expert, and experiential) to improve holistic primary care.

  • ▸ A new section on approaches to primary care is applicable to patients with IDD and other patients with similar needs.

  • ▸ These guidelines emphasize periodic preventive health assessments, health action plans, and systematic assessment of behaviours that challenge.

Footnotes

  • ↵* The search strategy details are available in English at www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.

  • Contributors

    All authors contributed to the literature and data analysis and to preparing the manuscript for submission.

  • Competing interests

    There are no conflicts of interest involving the developers and funders of these guidelines.

  • This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www.cfp.ca and click on the Mainpro+ link.

  • This article has been peer reviewed.

  • La traduction en français de cet article se trouve à www.cfp.ca dans la table des matières du numéro d’avril 2018 à la page e137.

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Primary care of adults with intellectual and developmental disabilities
William F. Sullivan, Heidi Diepstra, John Heng, Shara Ally, Elspeth Bradley, Ian Casson, Brian Hennen, Maureen Kelly, Marika Korossy, Karen McNeil, Dara Abells, Khush Amaria, Kerry Boyd, Meg Gemmill, Elizabeth Grier, Natalie Kennie-Kaulbach, Mackenzie Ketchell, Jessica Ladouceur, Amanda Lepp, Yona Lunsky, Shirley McMillan, Ullanda Niel, Samantha Sacks, Sarah Shea, Katherine Stringer, Kyle Sue, Sandra Witherbee
Canadian Family Physician Apr 2018, 64 (4) 254-279;
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