People with a learning disability are more likely to suffer from constipation than people without learning disabilities. They are also more likely to have unusual presentations or cannot communicate symptoms very well, which can lead to misdiagnosis and avoidable emergency admissions to hospitals.
Prevalence rates range from 33-50% in studies and this figure increases to nearly 60% in people with profound intellectual and multiple disabilities (PMLD).
The Learning Disabilities Mortality Review (LeDeR) also found that 23% of deaths identified constipation as a long-term health problem.
This is why it is important that carers and anyone supporting a person with a learning disability are aware of the higher risks of constipation and how to manage the condition.
Constipation rates can be higher for a range of reasons, including neurological and genetic causes of disordered bowel function. Abnormal muscle tone can also be a factor.
Other causes include inadequate diet and fluid intake, reduced mobility and lack of exercise, side effects of certain medications, and anxiety or depression.
Environmental factors can also increase the likelihood of constipation such as inappropriate toileting facilities or a lack of privacy or time to use them. Ignoring or not responding to the urge to pass stools can also lead to constipation.
According to the Learning into Action working group, it can be difficult to identify and diagnose constipation in a person with learning disabilities. This then leads to a vicious cycle where constipation worsens, culminating in a large (often loose) stool often thought to be diarrhoea. Laxatives are therefore stopped making stool accumulate again.
Over a period, the bowel becomes hugely distended, storing very large volumes of stool and the problem becomes very uncomfortable (and risky) for the sufferer. Deaths have occurred because of bowel ischaemia and bowel perforation.
Diagnostic overshadowing also means that symptoms of constipation can be overlooked and deemed to be behavioural issues or personality change.
Laxative use is high in the learning disability population. A quarter of people with a learning disability and two-thirds of the PMLD group had been prescribed laxatives in the previous year. In comparison, only 0.5% of the general population are on regular laxatives.
One study found that the treatment of constipation appeared to be unsystematic and there is a need for evidence-based treatment guidelines developed especially for people with intellectual disabilities to provide effective, quality care.
Another study in the British Journal of General Practice (BJGP) said it was important to review any long-term use of laxatives with patients/carers to identify possible deprescribing. Also to consider interventions that offer holistic medicines understanding and support around appropriate use.
This would include a healthy diet with adequate fibre, fresh fruit and vegetables, regular exercise, an active lifestyle and a good fluid intake.
The Learning into Action Group say that there also needs to be increased awareness of the additional risk of constipation due to certain medications such as anti-depressants, anti-psychotics and analgesics and effective monitoring of this.
It is also important to encourage good bowel habits such as raising the feet onto a low stool (‘squatty potty’) which is known to help empty the bowel. These effective lifestyle interventions, they say, could help reduce the annual £101 million laxative bill.
A review by South, Central and West (SCW), an NHS organisation providing support and transformation services to health and care systems, also recommended Structured Medication Reviews (SMRs) to be conducted for patients prescribed regular, or long-term, laxatives.
The evidence review highlighted that inappropriate laxative prescribing and over-prescribing of medicines that can contribute to constipation is a causal factor in the poorer outcomes for people with a learning disability and autistic people. It is therefore likely to be beneficial for GP Practice clinical pharmacists to conduct an SMR with patients/carers. The SMR will provide an opportunity to identify possible deprescribing, offer support around appropriate medication use and consider interventions that offer holistic medicines understanding.
Focused reviews of bowel health should be an essential part of Annual Health Checks. Those with chronic problems require in-depth assessment, including medication review to exclude iatrogenic causes. Detailed evidence of bowel habits should also be sought in advance from the person and/or their carers.
Chronic, untreated constipation can be very serious and can lead to more complex problems such as rectal bleeding due to anal fissures, haemorrhoids or rectal prolapse.
Symptoms can include:
A systematic approach to monitoring bowel pattern and function can assist early identification of constipation in people with learning disabilities. In some cases abdominal radiography may be necessary to confirm the diagnosis.
The SCW review made a series of recommendations on how to improve management of constipation for people with a learning disability. It found that further work should be carried out to understand the views and training needs of primary care practitioners including GPs. This includes guidelines and support for clinicians to enable reasonable adjustment modifications to general population guidelines for the management of constipation.
Suitable materials should also to be developed for adolescents and children and young people with autistic spectrum conditions and/or a learning disability.
This should be in addition to a clear structured bowel care plan developed and lead by a named clinician, with multidisciplinary input to support consistent implementation of interventions that is effective and holistic. Other treatment modalities such as abdominal massage and biofeedback may be considered as part of an individualised, integrated bowel management programme.
Further training and resources are also needed to help tailor the approach for people with a learning disability and autistic people to improve outcomes, including accompanying tools to help develop bespoke care plans. Medical approaches alone can treat a single episode of constipation, however without acquiring toileting skills, an individual is likely to become constipated again, therefore, repeating the cycle.
A qualitative review of the experiences of parents and carers of children with a learning disability and or autism who suffer from constipation would help identify a number of areas where current support and services could be improved, from a potential over reliance on prescribing medication, to the need for greater information and education (both for parents, children and clinicians).
The importance of taking a holistic approach to treatment and management which includes the availability of nonmedical support was an apparent key theme, as well as the impact of both experience of service and treatment concordance when families do not feel heard by professionals.
Professor Rohit Shankar, Professor in Neuropsychiatry, Peninsula School of Medicine, University of Plymouth, concluded: “People with intellectual disability are susceptible to multimorbidity and polypharmacy. They are also less likely to have an active healthy lifestyle in the form of nourishment, adequate drinking, and exercise. The biological and social vulnerabilities independently or compounded with the iatrogenic influences lead to chronic issues of bowel problems, particularly constipation.
“This in turn predisposes to mental and physical disturbances contributing significantly to poor health outcomes, overprescribing of laxatives and premature mortality. The malignant impact of this matter needs to be brought out of the shadows and the work carried out by SCW is a step towards this. An active plan to discuss and reduce constipation in people with intellectual disability is essential in the quest for improved lives and reduced mortality.”
