Canadian family physician / Médecin de famille canadien : primary care of adults with intellectual and developmental disabilities (Avril 2018)
La revue Canadian family physician / Médecin de famille canadien propose un numéro spécial sur les soins chez les adultes avec troubles du développement et/ou déficience intellectuelle
Primary care of adults with intellectual and developmental disabilities
1. Sullivan WF, Heng J, Salvador-Carulla L, Lukersmith S, Casson I. Approaches to primary care of adults with intellectual and developmental disabilities : Importance of frameworks for guidelines. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 5-7.
2. Boyd K, Diepstra H, Elbard K, Hamdani Y, Lunsky Y. Consumer inclusion : Experience of patients with intellectual and developmental disabilities informs primary care. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 8-11.
3. Grier E, Abells D, Casson I, Gemmill M, Ladouceur J, Lepp A, Niel U, Sacks S, Sue K. Managing complexity in care of patients with intellectual and developmental disabilities : Natural fit for the family physician as an expert generalist. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 15-22.
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.
4. Green L, McNeil K, Korossy M, Boyd K, Grier E, Ketchell M, Loh A, Lunsky Y, McMillan S, Sawyer A, Thakur A, Bradley E. HELP for behaviours that challenge in adults with intellectual and developmental disabilities. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 23-31.
OBJECTIVE : To provide primary care physicians with an understanding of the causes of behaviours that challenge (BTC) in adults with intellectual and developmental disabilities (IDD), as presented in the 2018 Canadian consensus guidelines for primary care of adults with IDD ; to offer a systematic approach to the assessment and treatment of such behaviours ; and to link to tools to support these assessments. SOURCES OF INFORMATION : This review elaborates upon guidelines 26 to 29 in the mental health section of the 2018 Canadian consensus guidelines. Several of the authors participated in the development of these guidelines, which were based on literature searches and interdisciplinary input. MAIN MESSAGE : Most adults with IDD are followed by primary care providers but they comprise a small proportion of primary care practices. Unique ways of communicating needs, diagnostic queries, and BTC are common in this population. This complexity can lead to missed diagnoses and inappropriate antipsychotic medication use with attendant risks. This article presents a systematic approach, HELP, to the assessment and treatment of factors of Health, Environment, Lived experience, and Psychiatric conditions that can lead to BTC and includes tools to support these assessments. CONCLUSION : A structured approach to the assessment and treatment of BTC in adults with IDD helps family physicians provide guideline-directed, individualized care to this population. This includes a systematic evaluation using the HELP framework that takes place over multiple visits. A team of health professionals might be needed for optimal care, but these resources are not routinely available across Canada.
5. Sullivan WF, Heng J. Supporting adults with intellectual and developmental disabilities to participate in health care decision making. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 32-6.
OBJECTIVE : To discuss what is new in the revised guideline 3 of the « Primary care of adults with intellectual and developmental disabilities [IDD]. 2018 Canadian consensus guidelines » on decision-making capacity, and how to implement the recommendations. QUALITY OF EVIDENCE : Integrative review based on a literature search, the framework of the United Nations Convention on the Rights of Persons with Disabilities, and the experience of the authors. MAIN MESSAGE : Person-centred health care of adults with IDD should include all possible contributions from the patient in decision making. At present, legal criteria do not address the relational aspects of decision making that are important for adults with IDD. The revised guideline 3 incorporates recent thinking regarding supported and shared decision making. It envisages decision making as a collaborative exercise in which the patient, trusted caregivers, and the family physician all are involved in deciding on medically appropriate interventions that promote the patient’s goals or values. CONCLUSION : Family physicians and caregivers both play an important role in supporting adults with IDD so that they can participate in health care decision making. Communication, mediation, and advocacy skills, plus the use of tools adapted for adults with IDD, can facilitate the family physician’s role.
6. Ally S, Boyd K, Abells D, Amaria K, Hamdani Y, Loh A, Niel U, Sacks S, Shea S, Sullivan WF, Hennen B. Improving transition to adulthood for adolescents with intellectual and developmental disabilities : Proactive developmental and systems perspective. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 37-43.
OBJECTIVE : To demonstrate how family physicians can contribute to a piece of the journey of improving quality-of-life outcomes for people with intellectual and developmental disabilities (IDD) when they undergo the transition from adolescence to adulthood. SOURCES OF INFORMATION : The « Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines » literature review and interdisciplinary input. MAIN MESSAGE : Family physicians should be proactive in anticipating and supporting the transition of people with IDD from adolescence to adulthood. Interventions should be guided by a developmental perspective regarding the person with IDD and a life-cycle approach to supporting families. Family physicians also have a role in helping people with IDD and their families to navigate successfully through changing community-based support systems in their province, especially health care and social services systems. Therefore, family physicians should be aware of current services available in their regions. CONCLUSION : Community and team-based family physicians can optimize the quality of life of people with IDD and their families by adopting a proactive developmental and systems approach to preparing youth with IDD for adulthood. In doing so, they exemplify the 4 principles of family medicine.
7. Casson I, Broda T, Durbin J, Gonzales A, Green L, Grier E, Lunsky Y, Selick A, Sue K. Health checks for adults with intellectual and developmental disabilities in a family practice. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 44-50.
OBJECTIVE : To provide tips and tools for primary care practitioners carrying out health checks for adult patients with intellectual and developmental disabilities (IDD) and for implementing a systematic program of health checks in a group or team practice. SOURCES OF INFORMATION : The « Primary Care of Adults with Intellectual and Developmental Disabilities. 2018 Canadian Consensus Guidelines » literature review and interdisciplinary input. Experience in implementing health checks in family practices was obtained through the primary care project of H-CARDD (Health Care Access Research and Developmental Disabilities). MAIN MESSAGE : Annual comprehensive health assessments (« health checks ») are a recommendation of the 2018 Canadian consensus guidelines for primary care of adults with IDD because of evidence of benefit in this population. Although health checks might require more time to complete for people with IDD than is usual for encounters in primary care, family physicians are in an ideal position to provide this service because of the attributes of family medicine, which include both an orientation to proactive care and the ability to provide continuity of care. Tips and tools are provided for carrying out health checks for adult patients with IDD and for implementing a systematic program of health checks in a group or team practice. CONCLUSION : Health checks can help enhance a family physician’s approach to providing care for adults with IDD.
8. McNeil K, Gemmill M, Abells D, Sacks S, Broda T, Morris CR, Forster-Gibson C. Circles of care for people with intellectual and developmental disabilities : Communication, collaboration, and coordination. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 51-6.
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.
9. Smith G, Ouellette-Kuntz H, Green M. Comprehensive preventive care assessments for adults with intellectual and developmental disabilities : Part 1 : How do we know if it is happening ?. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 57-62.
OBJECTIVE : To determine how best to measure the provision of comprehensive preventive care assessment of adults with intellectual and developmental disabilities (IDD). DESIGN : Cross-sectional study. SETTING : Ontario. PARTICIPANTS : Adults with IDD between 40 and 64 years of age in 2013 and 2014. MAIN OUTCOME MEASURES : Health examination was defined using the Ontario Health Insurance Plan billing data fee code A003 (with diagnostic code 917 or 319) or fee code K131, and the Primary Care Quality Composite Score (PCQS), a measure combining 7 different screening maneuvers (lipid, glucose, breast cancer, cervical cancer, colorectal cancer, eye, and hemoglobin A1c screening), was identified using administrative health data. RESULTS : A total of 28 825 adults with IDD were identified in 2013 and 2014. Overall, 12.1% of adults with IDD received a health examination ; 51.2% received a high (>/= 0.6) PCQS. Male patients were more likely to have received all of their eligible screening maneuvers if they had had a health examination compared with female patients (odds ratio of 5.73 vs 3.99, respectively). CONCLUSION : Less than 60% of adults with IDD appear to be receiving comprehensive preventive care. Future studies assessing the quality of preventive care received by adults with IDD should combine health examination billing codes and the PCQS.
10. Stringer K, Terry AL, Ryan BL, Pike A. Patient-centred primary care of adults with severe and profound intellectual and developmental disabilities : Patient-caregiver-physician relationship. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 63-9.
OBJECTIVE : To explore the process of the development of the patient-physician relationship in adult patients with severe or profound intellectual and developmental disabilities (IDD), from the perspective of the patients’ caregivers. DESIGN : Constructivist grounded theory. SETTING : St John’s, NL. PARTICIPANTS : Thirteen primary caregivers (5 males, 8 females) of 1 or more adults with severe or profound IDD. METHODS : Data were collected via in-depth, semistructured interviews conducted in person or by telephone. Interviews were audiorecorded and transcribed verbatim. Field notes were documented immediately by the interviewer and discussed with the research team. Memos in the form of reflective notes served as additional sources of data. MAIN FINDINGS : From the perspective of the caregivers, the core process in the development of the patient-physician relationship was protection. This process began as a result of the caregiver’s recognition of the patient’s vulnerability and moved through a number of stages before resulting in the development of a dynamic triangular interaction between the patient, caregiver, and family physician. First, the caregiver provides extreme nurturing to the patient, which results in the development of a strong bond between them. The patient and caregiver approached the family physician together as one unit, and then decided together on whether or not to open the patient-caregiver bond to the physician. The resultant dynamic triangular interaction formed the starting point from which 1 of 4 different relationship-development trajectories began. Which trajectory was taken and, therefore, the character of the relationships that developed was determined by how the caregiver and patient experienced their interaction with the family physician. CONCLUSION : Findings highlight the process of protection and the centrality of the patient-caregiver bond within the development of a triadic relationship involving the patient with IDD, the caregiver, and the family physician. How a physician approaches this bond can influence the trajectory of the resulting relationship.
11. Xie E, Gemmill M. Exploring the prenatal experience of women with intellectual and developmental disabilities : In a southeastern Ontario family health team. Canadian family physician Medecin de famille canadien. 2018 ; 64(Suppl 2) : 70-5.
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.
12. Sullivan WF, Diepstra H, Heng J, Ally S, Bradley E, Casson I, Hennen B, Kelly M, Korossy M, McNeil K, Abells D, Amaria K, Boyd K, Gemmill M, Grier E, Kennie-Kaulbach N, Ketchell M, Ladouceur J, Lepp A, Lunsky Y, McMillan S, Niel U, Sacks S, Shea S, Stringer K, Sue K, Witherbee S. Primary care of adults with intellectual and developmental disabilities : 2018 Canadian consensus guidelines. Canadian family physician Medecin de famille canadien. 2018 ; 64(4) : 254-79.
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.
