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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)
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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) |
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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
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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)
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This article was first published in Psychiatry;
Volume 2:9, September 2003 and reprinted with the kind permission
of The Medicine Publishing Company.
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Pictures taken from Going to the Doctor (1996), Gaskell: London.
See www.rcpsych.ac.uk/publications/bbw.
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