Health checks for adults with intellectual and developmental disabilities in a family practice

What is a health check and why is it necessary?

A health check is a comprehensive health review for an adult with IDD, including a physical examination and prevention or screening, which results in a management plan.^2,3 It involves the following:

• collecting background information about intellectual and adaptive functioning and social supports to make the resulting action plan more achievable (eg, planning a blood test or cancer screening involves understanding the patient’s capacity to consent and facilitating cooperation through appropriate accommodations and support);

• using knowledge of genetic syndromes and other associated conditions to guide care (eg, screening for hypothyroidism in a patient with Down syndrome); and

• undertaking a broader functional inquiry and physical examination, from head to toe, than would be done in a periodic health examination for patients of a similar age and sex in the general population to help compensate for communication challenges. People with IDD might not be able to ask for specific help or say what is wrong with their state of health. Documenting baseline health information can inform subsequent assessments (eg, knowledge of a patient’s tendency to experience heartburn or constipation might help point to the cause in assessment of a nonspecific change in behaviour on another occasion).

Health checks require a proactive approach, including inviting adults with IDD for regular reviews and follow-up. This can reduce barriers to attending appointments caused, for example, by lack of health literacy or by poverty. Scheduling extra time and planning to spread the tasks of a comprehensive review among other caregivers and over multiple appointments helps avoid the risk that encounters will deal only with current symptoms.

A health check helps address inequities in access to health care services experienced by adults with IDD by increasing rates of preventive screening and health promotion and by identifying undiagnosed conditions.^4,5 The recommendation of health checks for adults with IDD might seem to contrast with recent recommendations against annual physical examinations for the general population.⁶ However, those recommendations are for asymptomatic adults with no important risk factors, which is not the case for adults with IDD. The evidence for the benefit of health checks in adults with IDD highlights their special health issues and needs compared with members of the general population.

Why should family physicians perform health checks?

Canada, as a signatory to the United Nations’ Convention on the Rights of Persons with Disabilities,⁷ is committed to providing resources for persons with disabilities that enable them to be included in the community. That would reasonably involve community-based primary health care services, which, in Canada, include access to a personal family physician and, in some places, a nurse practitioner.

Health checks are especially suited to action by family physicians because the fundamental principles of family medicine⁸ and the basic skills of family physicians, such as continuity of care, comprehensiveness, communication skills, and collaboration with other health care providers, facilitate health checks.

Family physicians have a special responsibility to patients with IDD in their practices for multiple reasons. Persons with IDD are more likely to experience increased rates of mortality and morbidity compared with the general population.^9–12 They are vulnerable because of limitations in self-care, communication, and literacy, all of which can have considerable effects on their opportunities for good health and obtaining good health care compared with individuals without disabilities.¹³ They are more likely to be living in poverty and, as such, have additional health risks such as higher rates of cardiovascular disease, diabetes, and compromised mental health.¹⁴ Adults with IDD seek hospital emergency care more frequently than the general population does,^15,16 have higher rates of preventable admissions to hospital,^17,18 and have lower rates of cancer screening.^19–21

Nevertheless, evidence from Ontario indicates that adults with IDD see a family physician as often as those in the general population and with similar continuity of care.¹⁶ This level of access to a personal physician implies that family physicians have the opportunity to make a difference. There are barriers to care, however, that are difficult for family physicians to overcome, including lack of time in the clinical encounter and lack of systematic supports for gathering information, identifying referral resources, and ensuring other follow-up.^22–25 The following are tips and tools that might be helpful for addressing some of the barriers. The tips are based on the experience of 2 family health teams in Ontario^5,26,27 and they align with descriptions of successful health check programs delivered in Australia and the United Kingdom.^2,4,24 Tools that are helpful in implementing the tips can be found in Implementing Health Checks for Adults with Developmental Disabilities: A Toolkit for Primary Care Providers²⁸ and on the primary care webpages of the Surrey Place Centre website.²⁹

Tips for conducting a health check.

Consider using a medical record template for a cumulative patient profile³⁰ and a Preventive Care Checklist Form³¹ based on the 2018 Canadian consensus guidelines¹ to help prompt various components of the health check (see summary of elements of a health check beyond the components applicable to the general population in Table 1).^1,28 If using electronic medical records, have the template embedded functionally in your record. The following are key components:

• “Systems Review in Primary Care for People with [Developmental Disabilities],” a 1-page document in Implementing Health Checks for Adults with Developmental Disabilities: A Toolkit for Primary Care Providers,²⁸ can serve as a reminder of the benefit of a broader functional inquiry among people with IDD, who might not be likely to volunteer symptoms, and can help family physicians focus on preventive care, including secondary prevention around comorbidities that are common among people with IDD.

• Think of the health check not as a single “annual physical,” but as a process to accomplish over several appointments, so that both the needs of the patient and your practice routines can be accommodated.

• Extra time is often necessary to increase the capacity of patients to consent or assent and to decrease barriers to preventive care actions.³² Gynecologic examinations for Papanicolaou tests, for example, are enabled by more preparation, communication, and planning for support from caregivers.³³ Use easy-to-understand patient information on breast, cervical, and colon cancer screening tests, and about going to the doctor for a checkup.^34,35

• Ask your receptionist to inquire and request, when appropriate, that a caregiver who is familiar with the patient accompany him or her to the health check. Also, ask for the contact information of the patient’s substitute decision maker, if different than the caregiver.

• Share the tasks resulting from your assessment or plan, identified through a health check, with other health care professionals.^36,37 The disciplines helpful for people with IDD might be more extensive than regular consultation sources. For example, if a psychologist’s consultation is not available, an occupational therapist might be able to provide a functional assessment. A speech-language pathologist can help with communication issues. A physiatrist or a physiotherapist can address mobility issues. Nurses, including community care nurses and nurse practitioners, might be able to organize assessments at home, where history taking or tests like drawing blood or hearing assessments might be more successful for some patients. The patient’s pharmacist could provide a medication review and reconciliation. Social workers and mental health workers can assess and support emotional needs as well as provide help for system navigation.

• Share the data-gathering tasks of a health check or the plans resulting from it with others who support the patient. Most patients benefit from family members, friends, volunteers, or paid health or social service caregivers, case managers, or other advocates to ensure they can access management and follow-up plans. If a caregiver is unavailable for the appointment, some information could be collected through monitoring tools (eg, for bowel movements, hours of sleep).³⁸ In some cases, however, if a patient is not accompanied to an appointment by a caregiver, it could be a red flag that services and supports are deficient.

• Make health checks more efficient and effective by implementing them as part of a practice-wide systematic effort. Share tasks to the extent possible given the administrative, clerical, and health care staff you have available.^26,27,39

Tips and resources for implementing a program for health checks in your group or team practice.

The following tips are based on, and expanded on with tools for implementation, Implementing Health Checks for Adults with Developmental Disabilities: A Toolkit for Primary Care Providers.²⁸ A discussion of the structural and systemic barriers and facilitators to implementation has been published separately.^5,26

• Meet with members of your primary care team, including administrative, clerical, or reception and nursing or nurse practitioner staff to build awareness and collaboration. Decide who will do the preparatory steps below.

• Consider identifying health checks as a quality improvement program goal for your practice. This could be a strategy for sustainability. Decide what data collection is available or necessary to measure outcomes.

• Prepare a list of local resources to which family physicians in your group and members of your team can refer. A local developmental service organization might already have a listing of helpful local providers and specialists.

• Use resources that are available to build awareness in the practice about IDD. Use resources to help identify, in advance, opportunities for collaboration among the members of the primary care team. For instance, nursing staff can provide education for the family members and other caregivers for various procedures such as blood glucose monitoring, seizure monitoring, and first aid; administration of tube feedings or laxatives (suppositories and enemas); and other procedures. Nurse practitioners could manage many chronic health conditions such as diabetes, in consultation with the physician for more complex cases.

• Ensure the patient-centredness of a health check. Mitigate difficulties faced by patients and caregivers, such as understanding the purpose and content of health checks, booking appointments and coming to offices, time spent in waiting rooms, physical accessibility of clinic rooms and examination tables, expressing and receiving information during the encounter, coordinating what is suggested in your office with other services the patient is receiving, and any financial constraints. In our experience, we have found that some patients might feel stigmatized when receiving an invitation for a health check, an intervention not recommended for the general population (eg, if they do not see themselves as having an IDD).

• Identify the patients with IDD in your practice (eg, search your electronic medical record by key word or disease code, if available); if in a group practice, ask your colleagues or their practice nurses to review patient lists. If currently unidentified patients are thought to potentially have an IDD, use a screening questionnaire to help select those for whom the health check process and focus might be helpful, while seeking confirmation of the disability to facilitate access to social services.

• Promote a consistent way to denote patients as having IDD in your electronic medical record so that office staff and health care team members can subsequently be alerted, from visit to visit, to their special needs. This facilitates program evaluation, as well as annual reminders to receptionists to contact patients to offer appointments for annual health checks.

• Invite the patient, caregiver, and substitute decision maker for the health check. Provide a telephone script for your receptionist. It is helpful to place a reminder telephone call before the appointment to avoid no-shows.

• Consider a “meet and greet” appointment with the nurse or nurse practitioner as an initial step for some patients to get to know staff and help facilitate future assessments; desensitization to taking vital signs and performing other parts of the physical examination might be helpful. This appointment could also be an opportunity to gather background information; update the patient’s cumulative patient profile (medical records summary) with past medical history; request copies of previous psychological, functional, and genetic assessments; and identify social history and supports.

• Make use of available resources developed for patients with IDD to help explain health checks to patients (eg, a narrated online “health booklet”⁴⁰; a “social story” on the health check, available in a free online app⁴¹; and an online video about “going to the doctor.”⁴²)