Analysis – disease

What is the importance of disease in rehabilitation? Why are medical diagnostic and analytic expertise needed in a rehabilitation team? I pose these questions because many people – doctors, allied health professionals, and managers – consider that rehabilitation services do not need expert medical input. I hope this page explains the need to include expertise in disease when analysing a patient’s situation within rehabilitation. The requirement extends beyond making a primary diagnosis and beyond diagnosis and disease-specific medical treatments. It is integrated into the rehabilitation programme, just like all other professions. This page considers the role of pathology in the analytic process.

Context

“Rehabilitation considers a patient holistically.” Few people will disagree with that statement. Holistically means that the consideration is “characterised by the belief that the parts of something are interconnected and can be explained only by reference to the whole.” [Oxford English Dictionary] Pathology is one of the parts of the whole (ill person) and must be considered equally with all other parts. It should not be excessively prioritised, as in the biomedical approach, but it must not be ignored or considered irrelevant.

As a full member of any rehabilitation team, it is essential to have a doctor because it obviates some difficulties that can arise. A patient may present new symptoms or problems to another professional, often saying or implying that it may be serious or that it limits what they should do. Equally, the non-medical professional may become concerned that the person has a new disease or a complication of a known condition, tell the patient, and thereby cause anxiety if the patient has to wait and reduce rehabilitation. Third, the team may not recognise or respond to changes requiring a review of the disease diagnosis or management.

Why analyse pathology?

Knowing the pathology or pathologies a patient has – or does not have – is crucial for understanding and managing disability for several reasons. Failure to analyse the contribution of pathology when undertaking rehabilitation can lead to a waste of resources, patient harm, and to failure to achieve the success that would be achievable.

In rehabilitation, it is dangerous to accept the diagnosis reported by a patient without confirming it, directly or indirectly. It is dangerous to take a diagnosis made by another doctor, even a specialist, some years ago without reviewing the evidence and certainty. In follow-up clinics by busy doctors, it is easy for “this might be multiple sclerosis” to become “this 36-year-old woman who has had multiple sclerosis for ten years” without any new evidence. Doctors can make few diagnoses with absolute certainty, and in rehabilitation, patients attend over prolonged periods during which the actual diagnosis can become apparent if one is alert.

Failure to identify a correct diagnosis may, occasionally, deny the patient a cure that saves progression, early death, or (rarely) reverses their losses.

Second, it is dangerous to attribute all observed problems to a diagnosis, even if it is well-proven. A person may have two different pathologies or develop a new pathology unrelated to the first. More commonly, problems arise for other reasons, not from pathology. For example, the stress associated with family strife or debt may lead to significant symptoms and disabilities.

Therefore, one must always ask a series of questions:

what is the evidence for the presenting disease diagnosis, how certain is it that the person has the disease they report?
does the person ahve, or have they developed a second disease?
for each symptom (impairment) and disability, how much of the symptom or disability can reasonably be attributed to a known pathology?
- are other factors causing or worsening observed impairment or disabilities?

How might knowing the pathology help?

The underlying pathology will often suggest what impairments and disabilities are likely to be present and that the team should look for. For example, knowing that someone has a stroke or other neurological lesion in the left cerebral hemisphere dramatically increases the chance of the person’s language impairment (aphasia).

Conversely, knowing the diagnosis can suggest what problems are unlikely and need less attention. For example, it is rare to find visuospatial neglect associated with a left hemisphere lesion and screening for neglect is not a good use of time.

Post-traumatic amnesia?

I once went to see a man who had suffered a traumatic brain injury. I was told he was still in post-traumatic amnesia “because he is always wandering and getting lost“. However, he also interacted socially with nurses. His CT brain scan showed a contusion in his left temporal lobe. On formal testing, he had clear evidence of aphasia and, at the same time, he was oriented; direct questioning of ward staff confirmed this.

His reported wandering resulted from nurses giving him complex verbal instructions with gestures, indicating that he should go towards some part of the ward. He could understand the non-specific non-verbal communication that he should walk in a direction but did not understand why or where.

Once this was recognised and communication was improved, he stopped wandering. He made a good recovery.

The primary disease may be associated with other illnesses that the team should consider. For example, if someone who has had a subarachnoid haemorrhage starts to worsen with headache and drowsiness after two or three weeks, one should consider a diagnosis of hydrocephalus. One family thought Rivermead to have ‘worked a miracle through rehabilitation’ but, in truth, diagnosing hydrocephalus and getting a shunt inserted was the reason for the dramatic recovery.

The prognosis is often dependent on the underlying disease. Therefore it is crucial to know the diagnosis and the prognosis associated with the disease. The diagnosis determines the prognostic field, whether the person is likely to improve, deteriorate progressively or fluctuate over time. In addition, for some pathologies such as stroke and brain tumours, the diagnosis suggests specific features that may refine the prognosis. For example, urinary incontinence three days after stroke means a less promising outcome is likely. (here) The histological features seen under a microscope can classify a glioblastoma and give a more accurate prognosis.

We often overlook the last reason for analysing the pathology. Research has shown that around 25% of patients in hospital outpatient clinics do not have any disease to account for their presenting symptoms, signs, or disability. For inpatients, it may be around 5%. In general practice, the figure is nearer 50%. These patients are ill – their health is not good – but they do not have a disease that explains their illness. (They may have a disease, but it is not the cause.)

These patients have a functional disorder, with impairments (symptoms and signs) and disabilities unrelated to any pathology present. They benefit from rehabilitation (here), but the required rehabilitation will differ from that required if a disease were present. However, the best way to undertake rehabilitation is not yet well-established. Nevertheless, it is vital to be as sure about diagnosing a functional disorder as one is of any other diagnosis. More will be written about functional conditions on this site in due course.

Some aspects of the analysis of pathogy.

I have produced a Mind-Map graphic summarising many aspects to consider when analysing a patient’s situation. Here I will expand on a few points.

One critical point, which is only implicit in the graphic, is that the name or label given to the disease is extremely powerful. We are all used to the idea that the word, cancer, has very emotionally powerful connotations, often quite out of proportion to the actual significance for the individual.

In rehabilitation and many other circumstances, the disease name can affect:

the symptoms noticed or reported, with every natural change in bodily feeling being:
- attributed to the disease and, sometimes
- interpreted as a sign of doom;
some activities, which the person limits because they fear the activity poses a risk
social roles, both positively and negatively:
- taking on a very driven role raising money and support for the disease or doing many things ‘before I die.’
- withdrawal from most social networks, being sick all the time, afraid of getting worse and trying to avoid decline or death
social context, in that other people may treat the person differently because of the label (consider HIV as a label in 1988)
personal context, through developing or having unfounded expectations and beliefs which alter many aspects of a person’s life.

Some benefits arising from education as part of all rehabilitation arise from establishing a fair, evidence-based understanding of the disease. The rehabilitation team needs to include someone, usually a doctor, who can educate the patient, the family, and, if need be, team members about the disease and who can answer questions as and when they arise.

The graphic also highlights that the diagnostic label can influence family members, friends, and others, including official organisations. This influence may be positive. For example, having a diagnosis of motor neurone disease may give someone quick access to generally not readily available resources. The impact is probably negative, much more commonly. For example, a history of a ‘head injury’ or traumatic brain injury may make gaining employment more difficult.

Summary

For a complete formulation of a patient’s rehabilitation problems, the rehabilitation team needs an expert who can diagnose the disease and know how the diagnosis will influence assessment, planning and management. Often, a doctor or medical team unfamiliar with rehabilitation diagnoses a patient’s condition before a rehabilitation team sees the patient. Nevertheless, medical expertise within the multi-professional team is needed to confirm the diagnosis and then integrate all the relevant consequences and implications of the disease into the team’s formulation and planning. This page has explored some aspects of analysing a patient’s situation focused on pathology.