Commentary: Comprehensive health assessments for adults with intellectual disabilities

While regular general health screening has been an expectation of preventative services, it is recognized that, to ensure efficient use of limited resources, protocols should be adapted to reflect the particular risk of individual patients or patient groups.1,2 In a Commentary in the Canadian Medical Association Journal titled ‘Preventive care: so many recommendations, so little time’, Nicholas Pimlott stresses the importance of basing priorities and practice on evidence of effectiveness.3 Furthermore, means of implementing recommendations for preventative services must consider the most appropriate roles for patients, caregivers, allied health professionals and primary care physicians. The authors of the guidelines concerning ‘Preventive Services in Adults’ stipulate that ‘one-on-one interviews by clinicians are the least efficient way to obtain and update [needed] information’.4 Comprehensive health assessments are no longer accepted at face value. One must consider both the evidence for inclusion of specific assessments for a given individual patient, and the evidence indicating how the assessment should be conducted. Over the last 5–10 years, issues of health disparities faced by individuals with intellectual disabilities have become the focus of advocates, clinicians, researchers and policy makers across a number of developed nations.5–8 There is consensus that the lower health status, higher morbidity and premature mortality experienced by adults with intellectual disabilities can be in part attributed to inadequacies in health services and in particular preventative and anticipatory primary care.9 Health screening programmes, tools and protocols as well as guidelines have been developed in an effort to narrow this health gap.10–14 The level of evidence for the proposed guidelines, protocols and programmes has however been poor, most relying on expert opinion or consensus statements. For example, the recently published ‘Consensus guidelines for primary care of adults with developmental disabilities (the term “intellectual disability” is gaining acceptance worldwide, but some jurisdictions use “mental retardation”, “developmental disability” and “learning disability” synonymously)’ include 46 recommendations, only six of which are based on research evidence.11 Of those six recommendations, only two are based on ‘at least one properly conducted randomized controlled trial, systematic review, or meta-analysis’ (p.1412). The study by Lennox et al.15 examined the impact of a comprehensive health assessment—the CHAP—on the pattern of care provided to adults with intellectual disabilities by general practitioners in Queensland, Australia. It is an important study because it is a first in many ways. Few intervention studies in intellectual disabilities succeed in recruiting sufficiently large samples to allow statistical testing of complex interactions; still fewer employ randomized controlled trials. The ethical and practical challenges overcome by the researchers are commendable. As a result, they make a unique contribution to a field in great need of high quality evidence. Lennox et al. demonstrated improvements in the pattern of primary care provision, using a health screening approach tailored to the medical needs as well as the practical realities of individuals living with intellectual disabilities. The uptake by general practitioners was facilitated by the careful design of the assessment tool and protocol, including the engagement of carers throughout the process. The latter appears to have been a critical element of the approach used. The reliance on carers will need to be given consideration in efforts to replicate the intervention across various health and social service systems supporting adults with intellectual disabilities. There exist other tools to record health status and needs of individuals with intellectual disabilities who require support from others to communicate with health professionals. Research has shown that these are acceptable and perceived as useful by carers.13 The CHAP can serve that communication function and much more. In particular, it serves as an education tool for physicians who may not be familiar with the medical needs or the presentation of health problems by adults with intellectual disabilities or specific syndromes. The study by Cooper et al.14 relied on nurses with training in the field of intellectual disabilities and a physician assigned to the research project to review charts, assess patients and formulate recommendations. The CHAP, on the other hand, uses a more naturalistic approach which increases its applicability in jurisdictions where specialist nurses and physicians are not available. Lennox et al. rightly caution that longer term studies are needed to demonstrate reductions in morbidity and premature mortality. However, their study has clearly demonstrated that the CHAP improved access to an array of basic care to which all have a right. Every patient is entitled to immunization, vision and hearing testing and weight monitoring by their physician. In a system as in Canada, where annual general medical examinations are no longer recommended for all patients, we have a duty to promote the adherence to regular comprehensive assessment protocols such as those provided by the CHAP for this vulnerable group of citizens. Many individuals with intellectual disabilities have difficulties speaking for themselves in order to request screening or to describe their symptoms. They are not likely to be served well in a system where preventative care is meant to be integrated in the general care process. An important next step will be to explore ways to ensure preventive services are offered to adults with intellectual disabilities. Research is needed to identify both the barriers and enablers faced by physicians in their attempts to adhere to the relevant guidelines. Possible reasons for non-adherence may be similar to those suggested by Richmond et al.16 in reference to guidelines for adolescent health care. These include lack of time, poor reimbursement, restrictions on referral if subspecialty care is needed, inadequate training, reluctance to discuss sensitive issues, ineffective communication skills and lack of consistent recommendations.

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