We agree with the authors of “Managing patients with multimorbidity in primary care” on the significance of multimorbidity in the ageing of patients and on its impact on their quality of life, the increase in treatment burden they experience and the likelihood of additional health service utilization. Multimorbidity represents chronicity that is difficult to manage disease by disease or through the use of pharmaceutical agents and a more holistic approach is called for. The encouragement of primary care to assume the responsibility of complex care management is commendable and the appraisal of the challenges for primary care realistic. Our concern is that the challenges described are both increased and somewhat different if the person also has an intellectual disability. As deinstitutionalization efforts and associated encouragement of accessing of community based health services increase, people with intellectual disabilities are ageing in the community, are experiencing increased multimorbidity and are increasingly present in primary care caseloads. Their multimorbidity experiences are also different.
Recent data from the nationally representative sample utilized in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) has highlighted:
- There was a 71.2% rate of multimorbidity (2 chronic conditions or more) among the participants who were aged 40 years and old
- Although rates of multimorbidity did increase with age, the rate was 63% for those aged 40-49 years
- Women were twice as likely to be multimorbid as men.
- The emphasis on cardiovascular/metabolic conditions noted by the authors here were not replicated in IDS-TILDA; instead neurological, mental health, gastrointestinal and eye disease were most likely to be co-morbid conditions
(McCarron et al., 2013)
For these reasons, in the preparation of primary care practitioners to assume care of anyone with multimorbidity, there must also be education on the higher rates of comorbidity at earlier ages and for women and the different patterns of multimorbidity among people with intellectual disability. The authors highlighting of a “painful condition factor” in reported multimorbidity factor analyses is also of note; people with an intellectual disability are even more likely to under-report associated pain, particularly given that a number will lack the language skills to self-report. An additional concern is that people with an intellectual disability are less likely to participate in preventive interventions, health promotion and self-management training (McCallion et al., 2013). A critical challenge is both the levels of health literacy among people with intellectual disability and the lack of “easy read” materials targeting their education about the types of chronic conditions they will face. There is a critical need for the development and distribution of such materials.
Primary care physicians themselves should seek additional preparation to understand health issues which are different as well as effective communication approaches for people with intellectual disability. This is an area where collaboration with intellectual disability services agencies will help with the needed supports. The regular planned reviews and attention to continuity of care proposed by the authors we also support but we wish to point out that there is evidence of many people with intellectual disability being afraid of attending health clinics and sometimes being uncooperative in health reviews; suitable responses will require innovative approaches, time and planning for success. The authors’ acknowledgement of the challenge posed by 10 minute health screen approaches for all is of even more concern for care of people with intellectual disability who are multimorbid; the building of trust and complexity in examination will simply require additional time. Devoting such time is important!
As was recently noted in a review of deaths of people with intellectual disability in the UK, there is a higher rate of avoidable deaths in people with intellectual disability (as compared to the general population) from causes where better health care would have made a difference and inattention to needed changes in care as chronic conditions progress was a highlighted contributor (Heslop et al., 2014)
We agree with the authors’ recommendations to take a more interdisciplinary approach to care, and to undertake targeted assessments of chronic diseases, as well as psychological and functional assessment but we recommend that these interventions be expanded to include intellectual disability specific tools and again, collaboration with staff in intellectual disability services who may assist not only with assessment but also with subsequent care plan implementation.
In the recent past improved responses to health concerns such as upper respiratory disease among people with intellectual disabilities contributed to their increased longevity. However, increased longevity has also been associated with increased multimorbidity. Primary care playing its role in the management of multimorbidity will be important to assuring that there is quality of life during that increased longevity. Ageing in poor health is an empty prize!
Heslop, P., Blair, P.S., Fleming, P.J., Hoghton, M.A., Marriott, A.M., & Russ, L.S. (2014). The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet, 383(9920), 889–895.
McCallion, P. Burke, E., Swinburne, J., McGlinchey, E., Carrol, R., & McCarron, M. (2013). Influence of environment, predisposing, enabling and need variables on personal health choices of adults with intellectual disability. Health, 5(4), 749-756.
McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Carroll, R., & McCallion P. (2013). Patterns of Multimorbidity in an Older Population of Persons with an Intellectual Disability: Results from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Research in Developmental Disabilities. 34, 521–527.
Competing interests: No competing interests