Previously unidentified morbidity in patients with intellectual disability

Sample

Forty general practices within three health authorities in south and mid-Wales participated. They had a combined registered patient population of 354 000 — 20% of the 1.8 million in the territory. Each practice identified their patients with an intellectual disability with help from the research team and recruited them into the study using a pro forma letter (n = 374). After written consent had been obtained, or assent from carers if the patient lacked the capacity to consent, the initial sample for whom baseline data were collected was reduced to 318. Health checks were conducted for 190 (60%); 128 people moved, died, withdrew from the study, or refused or did not receive a health check.

The characteristics of the initial and final samples are given in Table 1. The latter was similar to the former in terms of age, sex, abilities/disabilities, challenging behaviour, and threshold indicators of mental illness; the final sample, however, had a higher proportion of patients from staffed accommodation and a slightly greater representation of people with the triad of social impairments characteristic of autism: qualitative abnormalities in reciprocal social interaction; qualitative abnormalities in communication; and a restricted, stereotyped and repetitive repertoire of interests and activities.

Procedures

Ethical approval was first obtained, followed by either informed consent by participants or assent on their behalf. In addition to age, sex, and place of residence, information was gained on each participant's skills, challenging behaviour, social abilities, and psychiatric status by interviewing a carer who knew the person well, using the Adaptive Behaviour Scale,14 the Disability Assessment Schedule,15 the Aberrant Behaviour Checklist,16 and the Psychopathology Instrument for Mentally Retarded Adults.17 These data will be reported in greater detail in future publications.

The primary care team then invited participants to attend a health check and physical examination conducted by the doctor or nurse following the Cardiff Health Check format. This included a structured interview to cover health promotion, systems enquiry and specific issues relevant to people with an intellectual disability as covered below.13 In preparation for this, each practice had been given an educational resource package as part of the study, which included chapters covering patient identification, health checking, causation, nutrition, epilepsy, challenging behaviour, autism, sensory impairment, and using antipsychotic medication.

On average, 18 weeks later, a post-health-check interview was conducted by the research team with the primary care team member who had administered the health check. It explored:

• whether all sections of the health check had been performed;

• whether, on the basis of medical notes and clinician's knowledge, identified health needs were newly identified problems or not;

• whether action had been taken; and

• the outcome of that action since the time of the health check.

Indicators of possible health needs found during health promotion screening were classed as health needs for the purposes of this study where they warranted some action on the part of the primary healthcare team. Post-health-check interviews were conducted for 181 patients of the 190 in the final sample.

Summary of main findings

The study found unidentified health problems in over half of the sample and serious illness in an impressively high minority. Although the significance of detecting the latter is self-evident, it is important to note that the other conditions more commonly found — such as vision and hearing difficulties, and blocked ear wax — may be more significant for these people than the general population because of their impact on already limited social, communicative, and practical abilities.

Comparison with existing literature

Untreated causes of possible pain, such as inflammation of the ear canal, have been implicated in the possible aetiology of self-injury among people with severe intellectual disabilities who, unable to communicate their distress and gain appropriate treatment, engage in repetitive behaviour to stimulate endogenous pain control.18 The treatment of obesity has been shown to reduce the likelihood of cardiovascular problems,19^,20 early intervention for sensory impairment or mobility can prevent further deterioration,21^–24 and the importance of the review of psychotropic medication in this population has been particularly emphasised.25

This study has confirmed earlier findings24 that, although patients with disability may fail to report symptoms, conditions can be diagnosed as long as health professionals use routine diagnostic screenings with a knowledge of risk factors and atypical presentations, in addition to taking account of carer observations. Restricted communication, social impairments, and additional behavioural or emotional difficulties are common in people with intellectual disabilities. Such a population is unlikely to fit easily into an on-demand health service.

Strengths and limitations of the study

Based on information from 16 practices on the total number of individuals identified, as opposed to those referred to the research team, it was estimated that the 40 practices would have identified a total of some 745 adults. This is somewhat lower than the 995 that would be predicted from the total number of adults on learning disability registers in Wales for that year extrapolated to a similar base population.

There are also areas where the achieved sample was not representative of the population of people with intellectual disabilities as a whole. For example, one would have expected slightly more males than females and that fewer people were living in staffed accommodation. However, in other aspects, including age, ability and presence of challenging behaviour, the sample characteristics were in line with other surveys.

There are also some other cautions that should be considered in interpreting the findings of this study. In addition to the sample not being entirely representative is the fact that the primary care teams were aware that the outcomes of action taken after completion of the health checks would be monitored. This may have contributed to the high rate of action taken; the link between health checking and action leading to health gain in regular practice may not be so direct. It should also be noted that the results reflect the impact of health checking in a population that had not previously received such proactive screening. Subsequent checking of a previously checked population may well identify fewer new health needs. Whether health checking would need to recur annually or at a greater interval requires further research.

The recognition of disease in the presence of communication disorder takes time and knowledge. People with intellectual disabilities may well need longer, or even additional consultations, to address certain medical problems.26 This intervention offered both the time through the health check to assess patients thoroughly and involve their carers when required, and provided the health professional with key knowledge through the educational package. Such proactive detection and treatment of morbidity in people who have been shown to have a high rate of unmet health needs holds out the promise of health gain, despite the undoubtedly complex nature of the population.

Implications for clinical practice and future research

Any health system needs to be able to deliver the following components at a primary care level: sufficient time and communication skill, education on the special issues of health to the physician at the point of primary care contact, structured physical examination and clinical histories, and monitoring of the outcome of care. Health checking with educational support offers one way of achieving such standards to serve well one of the most important groups in the population.