This article describes the expected health needs of people with intellectual disabilities in the community and how best to identify and address these needs.

Penny Blake (UK) and Michael Kerr (UK)

For many people with intellectual disabilities, the presence of ill health may impair their ability to achieve the best possible quality of life. The attainment of a good standard of health (at least as good as the rest of the population) is a reasonable goal. Primary care teams are central to the provision of good-quality healthcare. This provision is based on an ability to assess, investigate and manage a range of common and complex conditions, which requires an awareness of the specific needs of this population.

Community prevalence of intellectual disability
A recent, 2010, survey of general practices has found that 4.2 people in every thousand patients has an intellectual disability.  It is thought that approximately 0.33% of people with intellectual disability could be easily recognized by doctors because of the severity of their disability. The prevalence of severe and profound intellectual disabilities is between 3 and 4 per 1000 births (0.3-0.4%), and an estimated 2% of the UK population have a mild intellectual disability. The discrepancy highlights the difficulty of identifying people with intellectual disabilities in primary care settings.

Health needs of people with intellectual disabilities
People with intellectual disabilities suffer from the same range of morbidity as the general population, and thus, on one level, have the same primary care needs as the general population. These include:

  • the treatment of acute and chronic illness
  • appropriate referral to hospital or elsewhere
  • health promotion.

People with intellectual disabilities also have specific additional needs:

Key primary healthcare needs of people with intellectual disabilities
  • Common morbidities - the identification and treatment of conditions is more complex owing, in part, to associated difficulties with communication
  • Some conditions are seen with greater frequency in this population
  • Conditions are seen which appear to be more common in specific syndromes associated with intellectual disability
  • Despite improvements in health care of people with intellectual disability, research still shows that early mortality is higher in this population compared with the general population  (see further reading: Improving Health and Lives)

People with intellectual disabilities suffer from common morbidities:
People with learning disabilities as a group, have much greater health needs than the general population; however, the range of morbidities is the same as in the general population. Identification and treatment are usually more complex, due in part, to associated difficulties with communication, which leads to under-recognition of common disorders .

Certain conditions are more common in people with intellectual disabilities:
Figures vary for the prevalence of the common comorbidities in people with intellectual disabilities, such as epilepsy, behaviour problems, psychiatric illness and mobility and sensory deficits. These conditions are not unique to people with intellectual disabilities but their higher prevalence means that they are an important part of any assessment in this population.

Medical conditions commonly seen in people with intellectual disabilities

Eye conditions 23-25%
Hearing loss 3-24%
Dental disease 11-27%
Epilepsy 21-34%
Psychiatric disorders 10-14%
Behavioural problems 17-56%
(After Beange and Beauman, 1991)

Certain syndromes that cause intellectual disability are particularly associated with an increased risk of specific morbidity, including the following two examples:

  • Down's syndrome is associated with increased risks of cardiovascular disease, respiratory disease, thyroid disorders, Alzheimer's disease, leukaemia and ear and eye problems.  (See also Prasher, Psychiatry 2003; 2:8: 21-4).
  • People with fragile-X syndrome have increased connective tissue disease leading to joint laxity and cardiac abnormalities (80% of adults have mitral valve prolapse). In addition, disorders of communication (e.g. cluttering of speech, social shyness) are more common (see also Sabaratnam, Psychiatry 2003; 2:8: 29-33).

Increasingly, knowledge of these specific patterns of illness will guide the management of healthcare for these groups.

Intellectual disability is associated with early mortality

While life expectancy overall is improving, people with intellectual disabilities continue to have a reduced life expectancy compared with the population as a whole. Predictors for early mortality include:

  • a history of feeding difficulties (at any age)
  • immobility
  • epilepsy
  • Down's syndrome.

Meeting health needs from primary care samples
Studies of community-based populations of people with intellectual disabilities have uncovered three main areas of deficit in care delivery.

Untreated, yet treatable, medical conditions

Most individuals have a range of conditions, which would normally be self-presented to the GP. These include simple conditions such as overproduction of earwax (which is common in Down's syndrome) or dermatitis, and more serious problems such as breast lumps or major cardiac arrhythmias. They also frequently have eye disorders, such as cataracts and squints, which can benefit from a referral to a specialist.

Untreated specific health issues related to the individual's disability

Known health needs are often not addressed. A common example is that many people with Down's syndrome do not receive regular thyroid screening in spite of the high frequency of hypothyroidism. There is now a thyroid register in some parts of the UK, which should include all people who have a diagnosis of Down’s syndrome to ensure that they have regular screening of their thyroid function. The geographical variation throughout the country however does mean that not all patients will have this service and they are therefore reliant on the knowledge of their general practitioner to ensure they have the requisite testing, although the Cardiff Health Check also enquires about whether a thyroid check has been performed.

A lack of uptake of generic (non-targeted) health promotion

People with intellectual disabilities receive fewer health promotion measures than their non-disabled counterparts. These include relatively simple procedures such as weight and blood pressure measurement and more complex processes such as mammography and cervical smears. Clinics have been set up in various parts of the country to try to address this issue, such as well-man and well-woman clinic for individuals with learning disability. There is however no national consensus for this and many patients would anyway be best placed linking in with generic health programmes. Several regions have compiled easy-read information booklets to help patients understand what will happen at screening tests such as mammograms and cervical smears. Again the simple solution to this issue is to receive an annual health check; the Cardiff health Check covers all areas of health promotion.

Barriers to healthcare
The discrepancy in primary healthcare received by people with intellectual disabilities is likely to arise because of a number of barriers. These can be defined as:

  • patient-based issues, which include physical difficulties, behaviour problems and communication difficulties
  • physician-based issues, which include a lack of specialist knowledge about health issues and the need for additional service time and resources by many people with intellectual disabilities
Barriers to the delivery of primary healthcare to people with intellectual disabilities
  • Mobility and sensory impairment
  • Behaviour problems
  • Difficulties with communication
  • Inadequate knowledge and attitudes of staff
  • Reduced access to specialist services
  • Lack of time and resources

Mobility

Lack of mobility can make it difficult to access health services. People with intellectual disabilities are unlikely to have their own transport and often need to rely on others to take them.

Sensory impairment

This may reduce patients' ability to attend appointments on their own and increase distress during consultations and physical examinations because communication and comprehension are reduced.

Behaviour problems

It is difficult to judge the prevalence of behaviour problems that may impair the physician's ability to examine or treat a patient. An individual who is usually compliant may be extremely distressed by a visit to the doctor and express this inappropriately, making an examination very difficult. Behaviour problems may also have an impact on the diagnosis itself, e.g. by being mistaken for seizure disorder or a presentation of physical or psychological ill-health.

Communication

People with intellectual disabilities are often reliant on their family or carers to communicate their health needs on their behalf, and this is a major barrier to care. Even when a carer knows the person well it may be difficult to detect a health problem when the individual's communication skills are limited. In a practice setting, the GP needs accurate, reliable information on which to make clinical decisions, but this is not always available when there is a rapidly changing staff team.

Knowledge, attitudes and accessing specialist services

GPs list a lack of knowledge and confidence in managing conditions or illnesses among the top five barriers to care. The situation is compounded by major deficiencies in the knowledge of disability-related health issues. A further problem is a lack of awareness of appropriate specialist support services, and their availability. Many of the needs assessed require specialist support such as behavioural support teams or psychiatric or neurological assessment.

Time and resources

A study showed that GPs would be willing to see more people with intellectual disabilities if this brought greater remuneration. With the introduction of the Annual Health Check this has to some extent been achieved. In turn it is hoped that the yearly medical screening will be a pro active measure to detect and treat any health problems at an early stage. Practices however do not have to be involved in the scheme so not all patients will receive this service from their family doctor. The numbers of people receiving the Annual Health Check is increasing year on year; however, in many areas the uptake is less than half the predicted number.

Health Checks in primary care

Central to primary health care delivery, but not equitable distributed as we mention above, are annual health checks for people with an intellectual disability. The research base shows quite clearly that such checks, in England and Wales the recommended check is the Cardiff Health Check, will produce substantial increases in health promotion and disease finding activity.

Assessment
Central to the assessment of people with intellectual disabilities is recognition of the potential morbidities and likely problems the physician may meet in clinical practice. It can be daunting to face an individual with a novel symptom and a complex clinical history, who is uncommunicative. The key to assessment is following an appropriate structure, the main components of which are:

  • assessing the initial complaint
  • recognizing and assessing comorbidity
  • providing health promotion.


Delivering health assessment

The comprehensive assessment is essential for enabling people with intellectual disabilities to achieve the best possible health. Research has shown that attempting to deliver comprehensive care in the setting of 'as usual' practice ­consultations is unsuccessful. In order to deliver an assessment successfully the primary care team needs to prepare by addressing two factors, practice organization and clinical competencies.

Practice organization
Primary care teams will inevitably need to reorganize the delivery of care in order to provide assessment for people with intellectual disabilities. Such a change must be appropriate to the needs of patients, families and the professionals concerned, and must tie in with the concurrent changes in healthcare policy for people with intellectual disabilities. The latest Government Plans are outlined in the Department of Health’s Valuing People Now Report and updates.

Valuing People acknowledges the poor access of people with intellectual disabilities to health screening services. Although it covers these broad issues, no direct recommendations for health screening are given. The following specific practice changes are mentioned.

Practice register
To provide an optimum service for their learning disabled patients, practices need to be able to identify individuals with an intellectual disability on their lists and establish a practice register of them. With the current electronic records general practices use it is easily possible to achieve this. Systems can be devised that regularly recall these patients and also flag up any particular problems which an individual may have which may make appointments more challenging, for example communication issues. If a longer appointment is then envisaged in order to overcome this difficulty, this can be arranged.

Recall and audit
People with intellectual disabilities will need to be recalled on a regular basis to ensure that health assessment has taken place and that actions suggested are carried out. In particular, uptake of health promotion should be assessed.

Contact with other services
Practices will need to ensure that contact telephone numbers and referral patterns to intellectual disability services and health facilitators are established and recorded.

Clinical competencies
In addition to the organizational changes needed within primary care, clear clinical competencies are needed to ensure appropriate assessment can take place.Members of the primary care team will need to ensure that they are competent in the use of tools such as the Annual Health Check.

Defining specialist input
The primary care team should know when the needs presented by people with intellectual disabilities are beyond the team's clinical competencies. This is particularly important for conditions such as epilepsy - a very high level of seizures may be accepted when in fact specialist referral is necessary.

Communication and ethics

Since the introduction of the Mental Capacity Act 2005 there is now a legal framework for assessing a person’s capacity. There are also guidelines for what should be done when a person lacks capacity and how treatment should be decided in such circumstances. It is the responsibility of the professional performing the procedure or prescribing the treatment, to assess the person’s capacity. It is therefore essential that all practice members have a good knowledge of the legal framework and are trained in capacity assessment. In order to obtain some information it may be necessary to communicate via non verbal methods such as sign language and as such it is useful if the primary care team can access someone who is able to communicate reliably and effectively with the individual.

Specific competencies
The team may choose to develop specific competencies (e.g. in epilepsy, Down's syndrome or other comorbidities) to enhance their assessment skills. Some practices have an identified doctor within the team who will see all the patients who have a diagnosis of learning disability.

Conclusion
The focus of healthcare for people with intellectual disabilities is now the primary care team. This brings with it certain responsibilities. The most important is that while primary care is the 'point of first call' for people with intellectual disabilities, providing good-quality healthcare involves more than just brief assessment of presenting problems. Primary care assessment needs to be a proactive, structured process that addresses the generic and specific needs of this population while allowing appropriate referral to specialist services.

REFERENCES AND FURTHER READING

Beange H, Beauman A. Health care for the developmentally disabled: is it necessary? In: Fraser W, ed. Key Issues in Mental Retardation. London: Routledge, 1990.

Cardiff Health Check for People with a Learning Disability. In: Fraser W I, Sines D, Kerr M P, eds. Hallas': The Care of People with Intellectual Disabilities. 9th edition. London: Butterworth Heinemann, 1998.

(An example of a structured health assessment tool.)

Department of Health. Action for Health - Health Action Plans and Health Facilitation. Detailed Good Practice Guidance on Implementation of Learning Disability Partnership Boards.
Website: www.doh.gov.uk/learningdisabilities/haps_book.imp.pdf

Fraser W I, Sines D, Kerr M P, eds. Hallas': The Care of People with Intellectual Disabilities. 9th edition. London: Butterworth Heinemann, 1998.
(Multi-professional textbook.)

Improving Health and Lives: Learning Disabilities Observatory /www.improvinghealthandlives.org.uk

International Association for the Scientific Study of Intellectual Disabilities (IASSID) guidelines: www.iassid.org
(IASSID is an international and interdisciplinary scientific organization that promotes worldwide research and exchange of information on intellectual disabilities.)

Lennox N G, Kerr M P. Primary health care and people with an intellectual disability: the evidence base. J Intellect Disabil Res 1997; 41: 365-72.
(Review of primary healthcare delivery.)

Morgan C, Scheepers M, Kerr M. Mortality in patients with intellectual disability and epilepsy. Curr Opin Psychiatry 2001; 14: 471-5.
(Review of mortality in people with intellectual disabilities.)

Noonan Walsh P, Heller T, eds. Health of Women with Intellectual Disabilities. Oxford: Blackwell, 2002.
(Unique view of health of women with intellectual disabilities.)

O'Brien G, Yule W, eds. Behavioural Phenotypes. Cambridge: Cambridge University Press, 1995.
(High-quality book on the association between behaviour and specific causes of intellectual disability.)

Prasher V, Janicki M, eds. Physical Health of Adults with Intellectual Disabilities. Oxford: Blackwell, 2002.
(Up-to-date review of issues in the health of people with intellectual disabilities)

This article was first published in Psychiatry; Volume 2:9, September 2003 and reprinted with the kind permission of The Medicine Publishing Company.

Article updated in 2011

Pictures taken from Going to the Doctor (1996), Gaskell: London. See www.rcpsych.ac.uk/publications/bbw.

Dr Penny Blake is based at the Learning Disability Directorate, Tresedar Way, Caerau, Cardiff and Professor Michael Kerr is at the Department of Psychiatry & Neurology, School of Medicine, Cardiff University, Heath Park, Cardiff.

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