Transitioning Patients with Developmental Disabilities to Adult
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Carl V. Tyler, Jr, MD, MSc; Molly McDermott, DO Cleveland Clinic Lerner Transitioning patients with College of Medicine, Case Western Reserve School of Medicine, OH developmental disabilities (Dr. Tyler); Cleveland Clinic Family Medicine Residency Program, OH (Drs. Tyler and to adult care McDermott) [email protected] The pre-visit questionnaire, instructive videos, and Web Dr. Tyler receives royalties from resources detailed here can help you play a pivotal role the sale of his book, Intellectual Disabilities at Your Fingertips: A in planning, commencing, and solidifying this transition. Health Care Resource, referenced in this article. Dr. McDermott reported no potential conflict of interest relevant to this article. doi: 10.12788/jfp.0232 ome adults who have an intellectual or other develop- PRACTICE mental disability (IDD) require extensive subspecialty RECOMMENDATIONS care; many, however, depend primarily on their family ❯ Provide young people who S physician for the bulk of their health care. With that reliance have an intellectual or other in mind, this article provides (1) an overview of important ser- developmental disability (IDD) with a defined, vices that family physicians can provide for their adult patients explicit process for making with IDD and (2) pragmatic clinical suggestions for tailoring the transition into the adult that care. Note: We highlight only some high-impact areas of health care system. A clinical focus; refer to the 2018 Canadian consensus guidelines ❯ Conduct an annual for a comprehensive approach to optimizing primary care for 1 comprehensive, systematic this population. health assessment for patients who have IDD to improve CASE u detection of serious conditions Laura S, a 24-year-old woman with Down syndrome, is vis- and sensory impairments. A iting your clinic with her mother to establish care. Ms. S has ❯ Encourage young people several medical comorbidities, including type 2 diabetes, hy- and adults with IDD to perlipidemia, repaired congenital heart disease, schizoaffective participate in regular physical disorder, and hypothyroidism. She is under the care of multiple activity to reduce psychosocial specialists, including a cardiologist and an endocrinologist. stressors and counteract Her medications include the atypical antipsychotic risperidone, metabolic syndromes. A which was prescribed for her through the services of a commu- Strength of recommendation (SOR) nity mental health center. A Good-quality patient-oriented Ms. S is due for multiple preventive health screenings. evidence She indicates that she feels nervous today talking about these B Inconsistent or limited-quality screenings with a new physician. patient-oriented evidence C Consensus, usual practice, opinion, disease-oriented First step in care: evidence, case series Proficiency in the lexicon of IDD Three core concepts of IDD are impairment, disability, and handicap. According to the World Health Organization2: • impairment “is any loss or abnormality of psychologi- cal, physiological, or anatomical structure or function.” • disability “is any restriction or lack (resulting from an 280 THE JOURNAL OF FAMILY PRACTICE | JULY/AUGUST 2021 | VOL 70, NO 6 For an ideal health care transition, full engagement of the patient, the medical home, and the patient’s family (including the primary caregiver or guardian) is critical. impairment) of ability to perform an ements of an organized HCT process (www. activity in the manner or within the gottransition.org) specific to young adults range considered normal for a human with IDD, including young adults with autism being.” spectrum disorder.5,6 • handicap therefore “represents social- Even young people who are served by a ization of an impairment or disability, family physician and who intend to remain and as such it reflects the consequenc- in that family practice as they age into adult- es for the individual—cultural, social, hood require HCT services that include6: economic, and environmental—that • assessment of readiness to transition stem from the presence of impairment to adult care and disability.” • update of the medical history • assessment and promotion of self-care skills Essential transition: • consent discussions and optimized Pediatric to adult health care participation in decision-making Health care transition (HCT) is the planned • transition of specialty care from pedi- process of transferring care from a pediatric atric to adult specialists. to an adult-based health care setting,3 com- prising 3 phases: For an ideal HCT, full engagement of the pa- • preparation tient, the medical home (physicians, nursing • transfer from pediatric to adult care staff, and care coordinators), and the patient’s • integration into adult-based care. family (including the primary caregiver or guardian) is critical. In addition to preventive Two critical components of a smooth HCT care visits and management of chronic dis- include initiating the transition early in ado- ease, additional domains that require explicit lescence and providing transition-support attention in transitioning young people with IMAGE: ©JOE GORMAN resources, which are often lacking, even in IDD include health insurance, transportation, large, integrated health systems.4 Got Tran- employment, and postsecondary education. sition, created by the National Alliance to Young people who have special health Advance Adolescent Health, outlines core el- care needs and receive high-quality HCT MDEDGE.COM/FAMILYMEDICINE VOL 70, NO 6 | JULY/AUGUST 2021 | THE JOURNAL OF FAMILY PRACTICE 281 demonstrate improvements in adherence the parent or caregiver; beginning the ex- to care, disease-specific measures, quality amination with the least invasive or anxiety- of life, self-care skills, satisfaction with care, provoking components; and stating what you and health care utilization.7 TABLE 13 lists re- plan to do next—before you do it. sources identified by Berens and colleagues that are helpful in facilitating the transition. Systematic health checks provide great value Teach and practice A health check is a systematic and compre- disability etiquette hensive health assessment that is provided Societal prejudice harms people with IDD— annually to adults with IDD, and includes: leading to self-deprecation, alienation from • specific review of signs and symptoms the larger community, and isolation from oth- of health conditions that often co- ers with IDD.8 To promote acceptance and occur in adults with IDD (TABLE 211) inclusivity in residential communities, the • screening for changes in adaptive workplace, recreational venues, and clini- functioning and secondary disability cal settings, disability etiquette should be uti- • lifestyle counseling lized—a set of guidelines on how to interact • medication review and counseling with patients with IDD. These include speaking • immunization update to the patient directly, using clear language in • discussion of caregiver concerns. Successful an adult voice, and avoiding stereotypes about implementation people with disabilities.9 The entire health care Regarding the last point: Many caregivers of preventive team, including all front-facing staff (recep- are the aging parents of the adult patient with health screening tionists and care and financial coordinators) IDD—people who have their own emerging tests for a and clinical staff (physicians, nurses, medical health and support needs. You should initiate patient with IDD assistants), need to be educated in, and prac- conversations about advanced planning for often requires tice, disability etiquette. the needs of patients, which often involves ingenuity and ❚ Preparing for in-person visits. Pre- visit engaging siblings and other family members creativity to preparation, ideally by means of dialogue to assume a greater role in caregiving.12 allay fears and between health care staff and the patient or ❚ Benefits of the health check. A sys- anxieties. caregiver (or both), typically by telephone tematic review of 38 studies, comprising and in advance of the scheduled visit, is often more than 5000 patients with IDD, found critical for a successful first face-to-face en- that health checks increased the detection of counter. (See “Pre-visit telephone question- serious conditions, improved screening for naire and script for a new adult patient with sensory impairments, and increased the im- IDD,” page 287, which we developed for use munization rate.13 Although many patients in our office practice.) Outcomes of the pre- with IDD generally understand the need for visit preparation should include identifying: a periodic health examination, you can en- • words or actions that can trigger anxi- hance their experience by better explaining ety or panic the rationale for the health check; scheduling • de-escalation techniques, such as spe- sufficient time for the appointment, based on cific calming words and actions the individual clinical situation; and discuss- • strategies for optimal communication, ing the value of laboratory testing and refer- physical access, and physical rals to specialists.14 examination. Tailoring preventive care Initial appointments should focus on Many of the preventive services recommen- building trust and rapport with the health dations typically utilized by family physicians, care team and desensitizing the patient to the such as guidelines from the US Preventive clinical environment.10 Examination tech- Services Task Force, have been developed niques used with pediatric patients can be for the general population at average