The 2018 Canadian consensus guidelines on the primary care of adults with intellectual and developmental disabilities are an update to a previous version published in 2011 (Canadian Family Physician, Vol 57, May 2011: 541-553). The term intellectual and developmental disabilities (IDD) refers to various lifelong limitations in intellectual functioning and conceptual, social or practical skills that develop before the age of 18 years. These limitations vary in severity and type and can change during a person’s life. IDD includes intellectual disability, developmental disabilities, learning disability (as used in the United Kingdom) and autism spectrum disorder.
The 2018 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 2011 Guidelines used an evidence-based medicine (EBM) framework with no separate grading of strength of recommendations. While the EBM framework for developing guidelines is helpful for many patient groups, it has some limitations when developing guidelines for certain patient groups such as people with IDD. The EBM framework adopts a hierarchical ranking of quality of evidence that places randomized controlled trials 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:
- Very few randomized controlled trials involve participants with IDD. Recruiting such participants is difficult and often judged to be ethically inappropriate by research ethics boards.
- Randomized controlled trial design can be used only when the number of relevant variables among participants is small. People with IDD, however, are a heterogeneous group of patients with different, sometimes rare, etiologies for their disabilities, a broad range of intellectual and adaptive functioning, and multiple co-morbidities. These variations often affect health outcomes and responses to interventions.
- Randomized controlled trials are not designed to investigate the sorts of holistic interventions that adults with IDD need 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.
- 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 care of people with IDD. Qualitative studies eliciting patient and caregiver perspectives are important in such care.
- Family medicine has shifted 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 model explains ways in which inappropriate environments, inadequate social supports and systemic barriers also contribute to disability. A health ecosystem perspective highlights contextual factors that are likely to influence service use and patient outcomes in local settings for primary care of adults with IDD.
- The growing knowledge of expert clinicians on the care of adults with IDD is another valid and important basis for recommending interventions. The characterization of expert knowledge as ‘opinion’ and its downgrading to the lowest level of quality of evidence in the EBM-framework does not do justice to this valuable type of knowledge.
For the 2018 version of the guidelines we revised the 2011 classic EBM approach as follows.
We classified and profiled the literature reviewed for developing the guideline recommendations as:
- empirical knowledge (derived from randomized controlled trials 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).
We did not rank these types of knowledge hierarchically because they offer complementary insights. Each type of knowledge contributes a different perspective necessary for making informed clinical judgments (see How to use and understand the guidelines).
We distinguished strength of recommendations using a separate grading system that considered other factors such as the proportion of benefit to harm, preferences and values of patients and caregivers, and availability and use of resources (see How to use and understand the guidelines). This approach was adapted from that used by the Canadian Taskforce on Preventive Health Care for its guidelines.
Most of the 2011 guidelines have been revised and new ones have been added. The updated guidelines begin with a new section Approaches to Care. The recommendations in this section describe how to relate to patients with IDD and their caregivers. These guidelines promote a person-centred approach to care and stress the importance of placing the person with IDD at the centre of communication, planning and decision making.