Implementation of Health Links coordinated care plans for adults with intellectual and developmental disabilities: Cross-sectoral pilot program.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD) are a complex population that could benefit from improved care coordination across health and social sectors, as they experience poorer health and have higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions. OBJECTIVE OF PROGRAM: To pilot a novel, enhanced model of care coordination for complex patients with IDD. PROGRAM DESCRIPTION: Health Links is a provincial care-coordination program for patients with complex health care needs. This pilot program adapted Health Links to include a guide and training specific to adults with IDD to ensure that these patients' needs were met and high-quality, efficient care was provided. CONCLUSION: A tailored care-coordination approach for adults with IDD was able to identify complex patients in need and successfully bridge cross-sectoral care.

Teaching family medicine residents about care of adults with intellectual and developmental disabilities.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD), a group with complex health problems and inequities in access to health care, look to family physicians for primary care. OBJECTIVE OF PROGRAM: To enable residents to learn and demonstrate competencies that are unique to the care of adults with IDD with minimal extra time and resources required of the residency program. PROGRAM DESCRIPTION: In their regular family medicine teaching practices, residents undertake planned encounters with adults with IDD involving comprehensive health assessments with physical examinations. Tools to implement the Canadian guidelines for primary care of adults with IDD are available to support the residents in their encounters. Background information in the form of self-learning and small group learning resources, field notes with rubrics to assess residents' development of competencies, and faculty development resources are also available. CONCLUSION: It is important to include such planned clinical experiences in family medicine residency curricula because people with IDD have special needs that are difficult to learn about in other settings. It is a benefit to residents to have patients and families actively contributing to teaching.

Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines.

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.

Soins primaires aux adultes ayant des déficiences intellectuelles et développementales: Lignes directrices consensuelles canadiennes de 2018.

OBJECTIF: Mettre à jour les Lignes directrices consensuelles canadiennes 2011 en matière de soins primaires aux adultes ayant une déficience développementale. MÉTHODES: Des médecins de famille et d'autres professionnels de la santé expérimentés dans les soins aux personnes ayant des DID ont examiné et synthétisé les récentes connaissances empiriques, d'écosystèmes, expertes et expérientielles. Un système a été conçu pour catégoriser la qualité des recommandations. RECOMMANDATIONS: Les adultes ayant des DID sont un groupe hétérogène de patients qui présentent des affections médicales et des facteurs qui influent sur leur santé, qui diffèrent de ceux qui touchent les autres membres de la communauté de par leur nature, leurs manifestations, leur gravité ou leur complexité. Ces personnes nécessitent une approche de soins et des interventions adaptées à leurs besoins. Les présentes lignes directrices offrent des conseils en matière de normes de soins. Nous avons incorporé des références à des outils cliniques et à d'autres ressources pratiques. Les approches de soins décrites ici s'appliquent aussi à d'autres groupes de patients ayant un déficit cognitif ou de la communication, ou d'autres déficits des fonctions adaptatives. CONCLUSION: À titre de fournisseurs de soins de première ligne, les médecins de famille jouent un rôle vital de promotion de la santé et de bien-être auprès des adultes ayant des DID. Ces lignes directrices peuvent les aider à prendre des décisions avec les patients et les aidants naturels.

Managing complexity in care of patients with intellectual and developmental disabilities: Natural fit for the family physician as an expert generalist.

OBJECTIVE: To delineate the factors inherent in caring for patients with intellectual and developmental disabilities (IDD) that lead to complexity and to provide perspectives and techniques mapped to the phases of the clinical encounter. SOURCES OF INFORMATION: The authors of the physical health section of the 2018 Canadian consensus guidelines on the primary care of adults with IDD consisted of family physicians, all of whom practise comprehensive family medicine with additional clinical experience in care of adults with IDD. These authors reviewed evidence on which their recommendations are based and these recommendations have undergone a rigorous peer review to ensure that they deserve special attention because they highlight what is different from what a family physician would consider to constitute "normal care" for the general population. MAIN MESSAGE: Additional factors across the phases of clinical encounters with patients with IDD include the need for the following: an initial assessment that identifies genetic or neurologic conditions to guide anticipatory care and isolates unique barriers to health promotion and chronic disease management; adaptations to history taking, particularly for patients who are unable to describe symptoms owing to cognitive and communication deficits; overcoming challenges to performing physical examinations and certain investigations; addressing uncertainty in the formulation of hypotheses to establish an appropriate diagnosis; and involvement of resources of the developmental services sector to provide a management plan as well as an adapted empathetic approach in order to integrate the patient's illness experience. CONCLUSION: Although each patient with IDD is unique, and care of patients with IDD requires knowledge of certain conditions, these considerations are readily identifiable, and family physicians as expert generalists are well equipped to provide excellent care to patients with IDD.

Circles of care for people with intellectual and developmental disabilities: Communication, collaboration, and coordination.

OBJECTIVE: To review health information exchange (HIE) processes that affect the health of people with intellectual and developmental disabilities (IDD) and to suggest practical tips and strategies for communicating, collaborating, and coordinating in the primary care setting. SOURCES OF INFORMATION: The "Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines" literature review and interdisciplinary input. MAIN MESSAGE: Disparities exist between the provision of health care for the general population and that for people with IDD. These disparities are due in part to gaps in HIE. Health information exchange involves documenting, collecting, and disseminating a patient's health information. In exploring ways to improve HIE for people with IDD, the communication skills of the family physician are considered in the context of the triad that includes the patient, his or her caregivers, and the family physician. The framework of the Patient's Medical Home is used in exploring these processes, and various strategies are offered for communicating, collaborating, and coordinating health care that can be implemented by family physicians in order to narrow the gaps in care that exist for people with IDD. CONCLUSION: Improvements in HIE by communicating, collaborating, and coordinating health care better will improve health outcomes for people with IDD.

Exploring the prenatal experience of women with intellectual and developmental disabilities: In a southeastern Ontario family health team.

OBJECTIVE: To identify psychosocial challenges facing pregnant women with intellectual and developmental disabilities (IDD) using retrospective, routinely collected electronic medical record data. DESIGN: A retrospective qualitative study using narratives and supporting documents found in the electronic medical record of an academic family health team (FHT). SETTING: Academic FHT in southeastern Ontario. PARTICIPANTS: A sample of 10 women with a diagnosis of IDD, rostered to physicians at the academic FHT, who delivered a child between January 2010 and June 2015 (14 pregnancies). Exclusion criteria included women who received prenatal care from a midwife and women for whom no delivery or antenatal records were available. METHODS: Thematic analysis of data collected from a retrospective chart review. MAIN FINDINGS: Many women with IDD had yes marked on their antenatal records for poor social supports, family violence, and parenting concerns. Women with IDD had pregnancies that were characterized by complex social environments, financial instability, discord between their perceptions and their physicians' perceptions, and stressful encounters with Child and Family Services. CONCLUSION: Findings in this study support previous research that pregnant women with IDD are a vulnerable population, at higher risk of adverse health outcomes. There is a need for specific care guidelines for health care providers, as well as additional resources and social supports.