Donabedian’s health care quality model expected improvements in the structures and processes of any healthcare system to result in an improved patient outcome. Most healthcare systems and many people work within the biomedical model, and they assume that curing disease is the necessary outcome and the only worthwhile result to measure. This assumption is not necessarily valid., rendering cure an inappropriate goal. For example, some diseases cannot be cured, yet healthcare has a role. Sometimes the doctor might be able to cure, but the patient may not accept the resultant ‘collateral damage’, and on other occasions, a funder might not accept the cost of achieving the cure. Rehabilitation is challenging in healthcare systems because it works within the biopsychosocial model of illness and has a disability as its primary focus of interest. The cure of disease is outside its scope. In this website section, I consider the appropriate outcomes for rehabilitation.
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The outcome of rehabilitation expected by people depends upon their place in the healthcare context. Most healthcare services work within the biomedical model of illness, and the primary concern is diagnosing and curing disease. Hospital systems have reduced the attention paid to the consequences of the disease, culminating in the concept of someone being medically ready to discharge. This attitude has several roots. The services work within the biomedical model and therefore consider disease control their primary goal. Commissioners, often patients and their families, also focus on disease and have a similar view on the expected outcome. The pressure of demand for healthcare leads to a disregard for rehabilitation.
Rehabilitation works within the biopsychosocial model; within that model, its starting point is the patient’s disability. However, although much effort focuses on reducing the limitation of a patient’s activities, that is not necessarily the outcome of interest. The rehabilitation process uses the patient’s higher-order goals to plan rehabilitation and choose relevant interventions. Generally, higher-order goals relate to life goals, such as where some lives and who with, social relationships, and meaningful activities.
In stark contrast, those paying for rehabilitation focus almost entirely on reducing a person’s dependence sufficient to be able to leave the hospital and live with minimal care support. Some funded services focus on employment or leisure activities, but they are rare.
Healthcare system goals.
I will next discuss three outcomes of rehabilitation used by others to judge the value of rehabilitation services.
Length of hospital stay.
Payment to hospitals is usually based on the number of patients seen with a disease. A shorter inpatient stay enables the hospital to admit more patients and make more money. A person’s length of stay is determined by their disability and need for support and care, and the availability of support at home or a place to care for the patient safely. Providing rehabilitation is one way to reduce the length of stay in an acute hospital.
The emphasis on early discharge often leads to staff focusing on discharge as their primary goal, paying little attention to other rehabilitation needs. This imperative to discharge someone as fast as possible affects the rehabilitation team and the patient adversely; it has adverse effects on the whole organisation and many other organisations such as Social Services.
Moreover, most healthcare services claim to be patient-centred and place meeting patient wishes as a high priority. Most patients are keen to receive rehabilitation centred on their needs, just as they expect acute healthcare services to meet them. Making a speedy discharge a significant outcome associated with higher payments is not patient-centred.
This disconnection between what the patient expects and what healthcare systems state their priority is and the reality that the system’s goals for rehabilitation are financial and related to the system’s needs has extensive adverse effects. These effects affect the patient, the rehabilitation services, and the broader organisational environment, including outside healthcare.
A second commonly recommended measure of rehabilition outcome is a patient’s satisfaction with the service received. There are several problems.
The literature uses many phrases for a collection of related concepts that cover satisfaction. It is unclear how much they overlap or whether different people use the exact term for other ideas. Some examples include patient experience, patient perspective, patient perceptions, patient satisfaction, and patient reports. Therefore it is difficult to compare or combine data from different studies.
Patient satisfaction is primarily associated with the processes of healthcare. For example, a study by Riebling et al. identified four significant determinants of satisfaction: communication such as responding promptly to requests, the environment, particularly concerning toileting and privacy, meeting basic needs including keeping someone comfortable, and logistics, meaning predictable routines. They identified specific data items that would measure these four components.
However, measuring and improving patient satisfaction cannot be considered a rehabilitation outcome. Further, the connection between measures of patient satisfaction (or experience) and the quality of service is, at best, poor, and the relationship with improvement in outcome is likely to be weaker still. The conclusion of a review in 2010 by Gill and White is probably still valid, “The persistent use of patient satisfaction to evaluate the client’s perception of the quality of a health service is seriously flawed.”
Quality of life.
A commonly used healthcare outcome measure is quality of life. Quality of life is also considered an important goal in healthcare; at first glance, this appears reasonable. However, defining and measuring a person’s quality of life is complicated. It is additionally challenging to estimate how much a person’s quality of life is affected by health-related factors. Even though most studies say the study health-related quality of life, there is no means whereby the influence of illness can be separated from the many other vital factors such as employment, poverty, and loneliness, all of which will be associated with illness.
A further problem is the so-called disability-paradox: a person’s reported quality of life is scarcely affected by their level of disability, which has been known for many years. This is often attributed to response-shift, a re-evaluation of quality of life once one has a disabling illness. This has been observed in conditions such as stroke. And many authors have written about this, for example, in the context of dementia and from a philosophical perspective.
In my view, a patient’s quality of life must, in the final analysis, be what they say it is; it must be the person’s answer to the question, “On a scale of one to ten, how do you rate your quality of life?”. There can be no other definition.
Many people have investigated factors influencing a person’s answer to this question. Based on such studies, one may conclude that, on a population basis, many factors influence the response. This has led people to develop multi-axial measures of quality of life. These scales overlook the fact that, in an individual, it may be one factor alone that has a significant influence on their quality of life, for example, having a pet dog or visiting their daughter and her family.
Rehabilitation may alter one factor and even return that factor to its optimal state, but this may not influence the person’s reported quality of life. In other words, measuring the quality of life would be insensitive to change resulting from rehabilitation because other more powerful influences cannot be altered or moderated.
Research into the use of quality of life in health services reveals the difficulties. Marcel Post investigated the use of quality-of-life measures in spinal cord rehabilitation. He concluded that “Researchers should be as specific and clear as possible about the concept and operationalisation of QOL in their studies. Readers should not take the term “quality of life” for granted but should inspect the topic of the study from the actual measures used.” In a systematic review of the quality of life research in medicine and health sciences, Haraldstad et al. concluded that “the majority of QOL studies in health and medicine have conceptual and methodological challenges.”
Rehabilitation service goals.
Rehabilitation professionals are unlikely to accept that their goal is to reduce a patient’s length of stay. They may be interested in patient satisfaction, but they would not set any such goal with a patient; achieving high patient satisfaction might be a professional goal but never a patient goal. Most professionals and services would, if asked, agree that improving a patient’s quality of life is important but would be unlikely to set this as a goal for the team because it would be difficult to measure, and they would expect that the goal would be seen some months or years after the team’s involvement.
So, what are the less distant goals of rehabilitation? What goals would a rehabilitation professional or a rehabilitation service set for themselves with the patient?
One response is that each patient’s goals are unique, and it is impossible to generalise and give generic goals. This approach is used, inevitably, with individual patients. Some people attempt to generate generalised data, allowing the service to evaluate itself and compare itself with other services using goal attainment scaling. The principle is that all patients have their own specific goals, but the achievement of the goals is measured on a standard scale, usually running from -2 to +2 (no change to much more change than expected). As a means of measuring outcome, I and others have argued that it is flawed and should not be used. As a means of identifying goals and setting goals clinically, it is probably helpful.
Another response is to derive goals from first principles. I suggest that the purpose of rehabilitation is to optimise a patient’s well-being, an uncontroversial overall aim. I suggest that this aim leads to one or more of the following objectives:
- To maximise their capability (the ability to perform activities) within their environment, in those activities possible for and of interest to the patient.
- To minimise any pain, discomfort and distress the person may experience
- To help them achieve the degree of social integration and interaction they desire
- To help the process of psychological adaptation to any irreversible losses
- To reduce the stress on and distress of family members and friends (if relevant)
Most patients with a significant disability are likely to need some assistance across all four of these objectives. Still, the proportion of effort required by each will vary significantly between patients. The detailed goals within each domain will depend upon a host of factors such as the person’s condition and losses, their wishes and priorities, their environment etc.
You can see that no single measure will be appropriate as a measure of outcome. Wellbeing is another word for the quality of life. I have already discussed the problems of measuring a patient’s well-being and the additional issues associated with interpreting any data.
One expects improvements in the four major domains targeted by rehabilitation to contribute to and influence well-being, although obtaining direct evidence for individual patients would be impossible.
Despite all the difficulties in interpreting data, it is reasonable to ask for data on outcomes from a service. The purpose would not be ‘to prove’ that the service is effective; data from randomised trials can do that, but data from observational studies cannot. The purpose is to detect unexpected findings that will stimulate further investigation to improve the service; an audit is one of several quality improvement mechanisms. The undertaking of an audit might influence funding; the results should not.
An audit will involve a heterogeneous group of patients, and measures that can be used across the whole range must be chosen. Further, the effort involved must be minimised because collecting detail on only a tiny proportion of patients is much less helpful than a small amount of data from almost everyone.
I only know of one measure that directly covers the quality of life and most domains that impact upon the quality of life, the Euroqol. The fields covered are self-care, mobility, usual activities, which the respondent chooses but does not define, pain/discomfort, and anxiety/depression. The only rehabilitation goal not assessed is an adaptation to limitations associated with the illness.
A good measure covering activities and social participation in the World Health Organisation’s Disability Assessment Scales (WHO DAS). The detailed version with 36 questions covers various activities and social involvement. It is not specific to any disorder; it can be used for all patients, data can be collected most conveniently, and there are shortened versions of 12 and 24 items.
Separate measures would still be needed for pain and emotional distress. Still, these could easily be assessed using three numerical rating scales simply asking about the patient’s experience of pain, anxiety, and depression. Finally, I have suggested elsewhere that a question on loneliness might be a good outcome measure, perhaps six months after rehabilitation has ended.
This page has considered the outcomes of rehabilitation from the perspective of managers and funders, and the view of the rehabilitation professionals and team, with some consideration of the patient’s satisfaction. It has ended by suggesting a restricted set of outcome data related to the primary objectives of most rehabilitation services: the Euroqol, the World Health Organisation Disability Scales, and three numerical rating scales for the patient’s experience of pain, depression, and anxiety.