Assessment in Primary Care

ASSESSMENT IN PRIMARY CARE
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. Following the deinstitutionalization of people with intellectual disabilities, 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
Most practice audits suggest that in an average GP practice of 7500 patients, 25 individuals (0.33%) 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
Evidence suggests that early mortality is increased in this population compared with the general population (Morgan et al., 2001)

People with intellectual disabilities suffer from common morbidities: although the range of morbidities is the same as in the general population, identification and treatment are more complex. This is 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, eye disorders, Alzheimer's disease, leukaemia and hypothyroidism (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.

Untreated specific health issues related to the individual's disability - known health needs are often not addressed. A common example is that people with Down's syndrome do not receive regular thyroid screening in spite of the high frequency of hypothyroidism.

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.

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 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: one US study identified finance as the most common barrier to healthcare, probably reflecting insurance funding. A further study showed that GPs would be willing to see more people with intellectual disabilities if this brought greater remuneration.

Assessment
Central to the assessment of people with intellectual disabilities is a 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, as laid out in the Government's White Paper, Valuing People (see also Greig, PSYCHIATRY 2003; 2:8: 2-4).
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 - practices will need to be able to identify individuals with a intellectual disability on their lists and establish a practice register of them. This can be done by using a keyword search for conditions such as Down's syndrome, as well as through good communication with practice staff and record-keeping.

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. In the future the presence of Health Action Plans may be an appropriate audit topic (Department of Health, 2003). Each patient should have such a plan, which should be individualized and have its goals met. There is significant debate about how frequent this recall should be; currently an annual review is recommended by the Royal College of General Practitioners.

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.

Knowledge of assessment structure - a full structured assessment needs to be undertaken. Several assessment tools are in use, such as the Cardiff Health Check (see 'Further Reading'). Members of the primary care team will need to ensure that they are competent in the use of such tools.

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 - issues of communication and consent need to be updated. In particular, laws on consent to treatment should be fully understood within the practice team, see Keywood and Flynn, PSYCHIATRY 2003; 2:9: 51-54)

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.

Conclusion
The focus of healthcare for people with intellectual disabilities is now the primary care team. This significant shift 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.)

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.

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

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