How to Use and Understand the Guidelines
Scope and what the guidelines address
The 2018 guidelines on the primary care of adults with intellectual and developmental disabilities (IDD) aim to help family physicians and other providers of primary care to make informed decisions with their patients with IDD and the patients’ caregivers. The focus is on health issues that are specific to adults with IDD. These tend to be overlooked because they can vary from what is encountered in other patients.
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. They might not have the skills and support needed for self-care.
Types of knowledge
The guideline recommendations are based on four different types of knowledge: empirical knowledge; knowledge about the health care ecosystem; clinical expert knowledge; and experiential knowledge. Each type of knowledge has two subtypes as defined below. The types of knowledge are the basis for the strength of recommendation as described in the section Strength of recommendation below.
Blue and grey circles indicate different category subtypes. Half circles or indicate that the studies pertain to the background for the guideline. In each category, only the top ranking is shown and in the following priority of highest to lowest: . Tools and other practical resources are not categorized.
Knowledge of the outcome of exposure or intervention acquired from:
experimental studies (eg, RCT) and systematic review or meta-analysis of such studies;
observational studies (eg, case report, case-control, cross-sectional or cohort/longitudinal studies) or systematic review and meta-analysis of such studies.
Knowledge, usually descriptive or employing population-level data, regarding illness prevalence, patient or caregiver characteristics, environmental or socio-economic factors, availability or use of health care resources and services. Such studies use:
Knowledge, including skills, acquired through clinical practice. It can be elicited using qualitative approaches (eg, surveys, focus groups). It includes consensus guidelines, framing statements, position papers or topic reviews developed:
through an explicit consensus process (eg, systematic review, synthesis of knowledge, consultation or discussion);
without an explicit consensus process.
Reflections on experiences of a health condition, care approach, intervention or health care system derived from:
patients with IDD or caregivers;
Strength of Recommendation
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.
These recommendations were selected by 5 clinicians (family physicians and a psychiatrist) as the most important to promote in any clinical practice or recommendations that pertain to health issues that are most commonly overlooked in patients with IDD
A strong recommendation is one that can be supported without qualification by family physicians and other health professionals providing primary care. They can be confident that all the following conditions apply:
- There are at least 3 types of knowledge supporting a recommendation or at least 2, one of which is in a category subtype indicated by a blue circle or . This condition is taken to be an indication of the breadth, depth and special relevance of knowledge.
- There is a greater balance of anticipated medical benefit or positive clinical impact over risk of harm;
- Most people with IDD and their caregivers would find the intervention to be tolerable;
- The family physician or other primary care provider would typically have the resources (eg, time, materials, training, supports) to engage in the approach or offer the intervention, or would be able to accommodate or advocate for the approach or intervention.
- The approach or intervention is an effective use of resources, taking into consideration factors such as the impact on the time, priorities and out-of-pocket expenses of patients and their caregivers and the limits of the practice or health care system.
These actions have a good basis in current knowledge. Family physicians and other health professionals providing primary care will need more extensive discussion than usual, however, with patients with IDD and caregivers and/or consultation with other health professionals, ethicists or health care administrators before deciding to implement the guideline.
The guideline recommendations sometimes refer to clinical resources that facilitate the implementation of a recommendation into clinical practice.
Implementing some guidelines 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 CanMEDS-Family Medicine roles of family physicians identified by College of Family Physicians of Canada.