White Book of PRM

Chapter 2 –Why rehabilitation is needed by individual and society

For this paper, the collective authorship name of European PRM Bodies Alliance includes:

  • European Academy of Rehabilitation Medicine (EARM), 
  • European Society of Physical and Rehabilitation Medicine (ESPRM),
  • European Union of Medical Specialists PRM Section (UEMS-PRM Section)
  • European Union of Medical Specialists PRM Board (UEMS-PRM Board)
  • The Editors of the 3rd edition of the White Book of Physical and Rehabilitation Medicine in Europe: Anthony B Ward, Pedro Cantista, Maria Gabriella Ceravolo, Nicolas Christodoulou, Alain Delarque, Christoph Gutenbrunner, Carlotte Kiekens, Sasa Moslavac, Enrique Varela-Donoso, , Mauro Zampolini, Stefano Negrini.
  • The contributors: Pedro Cantista, Carlotte Kiekens, Anthony Ward, Mauro Zampolini Karol Hornaček, Aydan Oral, Bradley, Rory 0`Connor, Christoph Gutenbrunner, Andrew Haig, Geraldine Jacquemin, Vera Neumann, Peter Takač.

Abstract

In the context of the White Book of Physical and Rehabilitation Medicine (PRM) in Europe, this paper describes the background to the context of PRM services and comprises the following: 

  • Epidemiological Aspects of Functioning and Disability
  • Ethical Aspects and Human Rights
  • Rehabilitation and Health Systems
  • Economical Burden of Disability
  • Effects of Lack of Rehabilitation

Health care service planning accounts for the burden of disability among society and the chapter describes the justification for specialist rehabilitation, the background of PRM and why making a functional diagnosis and a management plan based on function is its core competence.

The chapter describes the increasing burden of disability due to conditions seen in PRM practice rather than on all those diseases contributing to physical disablement and does not include mental illness, learning disabilities, etc.  10% of Western Europe’s population have a disability and are surviving longer, resulting in higher costs for health and social care and a greater impact of co-morbidities.  The chapter also describes the impact and increased costs in the absence of rehabilitation.  Not only is money spent on rehabilitation recovered with five to nine-fold savings, (e.g. in return to work), but rehabilitation is effective in all phases of health conditions.  Specialised rehabilitation (as delivered by PRM services) is highly cost-efficient for all neurological conditions, producing substantial savings in ongoing care costs, especially in high-dependency patients.  

Disability discrimination has been outlawed and the text describes what the legal context of a person living in Europe with a disability.  The second part highlights the United Nations Conventions on human rights, confirmed in the World Report on Disability, but also on the principles of ethical practice among PRM specialists.  

The third part addresses the variability of access to and funding of rehabilitation services across countries.  The chapter also distinguishes highly specialist interventions (such as those provided by a PRM specialist) from specialised therapies, (such as pressure ulcer management) and generic therapies (e.g. after an uncomplicated limb fracture).  It will be important for healthcare authorities, public health organisations, payers, providers, healthcare professionals, consumers and the community. 

The economic and social burden of disability on society is considerable and will get worse, although this is difficult to quantify.  Direct costs are variable and include disabled persons’ additional costs for daily living and state disability benefits.  Rehabilitation has a pivotal role in reducing these costs through promoting personal recovery and increasing function through altering environmental factors. This part describes cost savings studies through rehabilitation for persons with severe disabilities.

Key words

Physical and Rehabilitation Medicine; Europe; Burden of Disability; Economics; Human rights; Rehabilitation costs and impact.

Introduction

The White Book (WB) of Physical and Rehabilitation Medicine (PRM) in Europe is produced by the 4 European PRM Bodies and constitutes the reference book for PRM physicians in Europe. It has multiple values, including to provide a unifying framework for the European Countries, to inform decision-makers at the European and national level, to offer educational material for PRM trainees and physicians and information about PRM to the medical community, other rehabilitation professionals and the public. The WB states the importance of PRM, that is a primary medical specialty. The contents include definitions and concepts of PRM, why rehabilitation is needed by individuals and society, the fundamentals of PRM, history of PRM specialty, structure and activities of PRM organizations in Europe, knowledge and skills of PRM physicians, the clinical field of competence of PRM, the place of PRM specialty in the healthcare system and society, education and continuous professional development of PRM physicians, specificities and challenges of science and research in PRM and challenges and perspectives for the future of PRM.

This chapter describes the background to the context of PRM services.  Any planning of the latter has to take into account the burden of disability among society and the chapter provides an overview of the situation not only in Europe, but also generally across the world.  Specialists in PRM need to relate to this context and know how to apply it to permit them to practise within the accepted standards for the specialty.  Other doctors, healthcare professionals and service planners also need to know the background of PRM and why making a functional diagnosis and a management plan based on function is the core element of competence in PRM.

Epidemiological Aspects

Demographic Change in Europe 

Europe’s population is not only growing and, has recently had a further expansion from large numbers of migrants.  The figures in 2013 pointed to a total of 742.5 million inhabitants, of whom 510 million live in the 28 member states of European Union.  The Union of European Medical Specialists (UEMS) includes the Greater European Space with 31 countries– EU member states plus Switzerland, Norway, Iceland).  Turkey is an associate member, but the UEMS section also contains observer countries (Serbia, Bosnia and Herzegovina, Montenegro, Russia and Ukraine).  The UEMS is seeking to include other countries from Eastern Europe and those bordering Asia, such as Bieleorus, Kazakhstan, Azerbaijan, Georgia and Armenia.  

The total population thus rises to 851.6 million according to the more recent statistics (2016).  Life expectancy is also increasing among Europeans.  For instance, it rose in Germany by almost 3 years between 1990 and 2000 and, by 2030, it is estimated that one person in four will be aged 65 years or over (1,2).  In addition to an ageing population, an increased level of disability is seen, which is reflected by a growth in the burden of care, higher costs for health and social care and a greater impact of co-morbidities.  About 10% of Western Europe’s population experience a disability, as described in a British survey (3,4).

Two important factors have also to be considered: 

  • Survival from serious disease and trauma leaves an increasing number of people with complex problems functional deficits. 
  • Many of these people are young at the time of their event/injury and will survive for many decades (5,6)

Examples are numerous, e.g. stroke, traumatic brain injury, polytrauma and childhood cancer, where better-organised acute care and rehabilitation have led to greater survival and better outcomes (7–16).

There is an also expectation of good health in today’s society.  This places further demands on all health care, including PRM specialists.  Dealing with the consequence of disease and trauma, such as spasticity following an insult to the brain or spinal cord, means that not only do patients’ lives improve, but there is also a benefit to the health economy by reducing the expenditure of treating these complications.  This will have a direct effect on care provision, working lives and pensions (12,13,17).  In particular, problems, such as immobility, pain, nutrition, incontinence, communication disorders, mood and behavioural disturbance become important in addition to systemic illness and the complications of the predisposing disabling conditions.  Rehabilitation is effective in reducing the burden of disability and in enhancing opportunities for people with disabilities.  There is evidence that it may be less expensive than providing no such service (17).  There is strong evidence that preventing complications of immobility (e.g. pressure ulcers and contractures), of brain injury (e.g. behavioural problems) and of pain (e.g. mood changes) can lead to many benefits (17).

Epidemiology of Functioning and Disability 

Epidemiological studies have traditionally based their methodology on pathologies.  They have now started to address chronic disease as an entity, but have not yet properly tackled the concepts of functioning, participation and quality of life among persons with disabilities as a population.  A modern approach is to deal with these problems by focusing on Healthy Life Expectancy (HALE) and Disability-Adjusted Life-Years (DALYs).  These are summary measures of population health that combine information on mortality and non-fatal health outcomes to represent population health in a single number. In addition to the incidence and prevalence of the most frequent pathologies in the field (strokes, spinal cord lesions, traumatic brain injuries, amputations, rheumatic diseases, other neurological or musculoskeletal conditions, chronic pain, etc.), epidemiology in PRM should consider the: 

  • Resultant loss of functioning in terms of the ICF categories; 
  • Natural history of functions, activity and participation; 
  • Need for and access to resources for use in rehabilitation (human resources, facilities, equipment, materials); 
  • Access to the available PRM resources. 

Such information aids the planning and prioritisation of regional, national and European services, in the funding of research and in the development of training by giving information on the effectiveness and cost-effectiveness of PRM interventions.  There are many reports giving the incidence and prevalence of the major disabling conditions seen in PRM practice. Some examples are given in Appendix 3.  PRM is particularly concerned with their impact.  As an example we may look for the results of a recent survey in Portugal which reported that at least 0.7 % of the entire population was restricted to bed; 0.4% were restricted to sitting (require wheelchairs); 1.9% did not live in their own homes; 9.0% did not walk or had a significant limitation in walking; 8.5% were limited in transferring to and from bed; 6.2% could not use the toilet without help; 8.6% needed help dressing or undressing; 3.6% of men and 5.3 % of women had urinary incontinence; around 2.3% had speech difficulties.  The overall prevalence of all disabilities in the community was 10% (18). 

In summary, the epidemiological data support the burden of long term conditions among populations in Europe and highlights the need for rehabilitation in Europe.  Specific epidemiologic data focused on functioning and reduced activities are essential to give us the correct idea how we are progressing in global rehabilitation care.  It is thus possible top surmise the importance of the need for rehabilitation and the potentially significant contribution of PRM in reducing this burden as well as to empowering people with disabilities.

Ethical Aspects and Human Rights 

The aim of this chapter is to highlight the progress to date in supporting human rights for people with disabilities, particularly, when they need the advice of and treatment from PRM services.  This chapter deals with two aspects: human rights as a societal approach (macro level) and an ethical approach of practising medicine (micro level).  In reality, there is an interaction of both.

The conclusion was that human rights are playing an increasing role in the struggle to improve health and healthcare globally. They also have important implications for rehabilitation practitioners and researchers and should form the core of any ethical framework for rehabilitation. It might even be argued that rights and dignity are themselves valued outcomes for rehabilitation.

This chapter deals mainly with human rights, but has been included to show where they sit into PRM practice.  Specialists in the field must address the ethical issues concerning the principles & norms of proper professional conduct.  They should also concern themselves with knowing the rights and the duties of health care professionals themselves & their conduct toward patients and fellow practitioners, including the actions taken in the care of patients and family members.  They assume responsibility to adhere to the standards of ethical practice and conduct set by profession and these are set out in all or most European states, e.g. the UK’s General Medical Council’s “Good Medical Practice”).  This includes ethical issues in patient care, professional teamwork and coping with healthcare rationing.  Clinicians should take note of lifestyle issues for persons with disabilities and should follow general professional conduct in ethical issues in rehabilitation research.

Human rights approach:

There has been a considerable change in human rights opportunities for, and in the legal framework surrounding discrimination against people with disabilities.  There are now over one billion persons with disabilities across the world (19) and they form a significant proportion of society.  This equates to about 106 million people living in Europe.  Their rights are thus main-stream and they are not a faction to be catered for.  In the past, they were simply regarded as a group, for whom care should be provided, but it is the norm now in Europe (or should be) that they live as citizens with full autonomy, inclusion, dignity and human rights (20).  This is fundamental in the text of the UNCRPD.  This is also supported in the UN Standard for Human Rights, which forms the basis of legislation to prevent discrimination against people on the grounds of disability.  The UN declaration of Human Rights (21) states that a person with a disability should not be an object of care (a “patient”) throughout life.  Instead, he or she is a citizen with special needs related to a specific disability.  These needs should be catered in the society, but in a “normal” context.  Participation is fundamental and a central aspect of this is access to society.  This includes physical access, e.g. into public and private areas and buildings, as well as to public transport, information etc.  Regulations on accessibility have been established in several European countries for the construction of public buildings.  The UN General Assembly approved the development of UN Standards in December 1993 and, through its development into a convention to provide persons with disabilities full participation and equality, it is important in laying down fundamental principles.  The WHO defines disability as an interaction of a person with a health condition and the environment solving the either or discussion between the medical or social approach to an as well as approach (19). 

The Council of Europe has also published a series of reports and documents on human rights for people with disabilities.  These have not been produced in detail here, as they were published in the 2nd Edition of the White Book (22,23).  Its aims are to: 

  • improve the quality of life of persons with disabilities and their families over the next decade;
  • adopt measures aimed at improving quality of life of people with disabilities, which should be based on a sound assessment of their situation, potential and needs;
  • develop an action plan in order to achieve these goals;
  • allow equity of access to employment as a key element for social participation;
  • adopt innovative approaches, as persons with physical, psychological and intellectual impairments live longer;
  • create activities to enable a good state of physical and mental health in the later stages of life;
  • strengthen supportive structures around persons with disabilities in need of extensive support;
  • promote the provision of quality of services;
  • develop programmes and resources to meet the needs of persons with disabilities.

Disability Rights legislation has also been created in several European countries (24).  Some have had longstanding legislation with a general policy on the rehabilitation of persons with disabilities (e.g. France has had a Disabled Persons Act since 1975), but the majority of countries have passed anti-discrimination legislation only during the last fifteen to twenty years, e.g. Act of Equal Opportunities for Disabled Persons (Germany), Framework Law (Italy), Constitution Act (Finland), Act on Provision of Rights of Persons with Disabilities (Hungary 1998), Health for All 2004 (Slovenia), Disability Discrimination Act 1996 (UK), Toward Inclusion 2001 (UK) etc.  

These are as follows (7): 

  • Rehabilitation & the right to health is described in the World Report on Disability 2011 and the UN Convention on Human Rights 2005 (19,25,26).  Human rights are based on the FREDA values (Freedom, Respect, Equality, Dignity, Autonomy), which gives freedom from discrimination, particularly where minority rights are considered.  All members of society have a right to health in terms of health determinants, sanitation, food, water, nutrition and a right to rehabilitation.   The conceptual description of rehabilitation has previously been described in the context of its provision through the health sector
  • Rehabilitation is also supported through international law and there has been much written in many declarations and conventions – e.g. 2006 UN Convention on Rights of Persons with Disabilities (27).  Equally, rehabilitation is supported under regional EU law and the European Convention on Human Rights describes this.  Finally, PRM and health services support a human rights approach to the practice of rehabilitation and PRM services.  These should be available, acceptable to users, be of high quality and be  accessible  to all (i.e. non-discriminatory, physical, affordable, within the field of ethics, but this is not enshrined in law or conventions.
  • They should also enshrine professional values and standards, medical education and training on ethics and human rights and advocacy 

The recommendations were to (27): 

  • Promote professional standards 
  • Highlight education and training on ethics and human rights for medical undergraduates and doctors in training
  • Encourage education among people with disabilities, influencing policymakers and set advocacy assistance

From a human rights perspective, rehabilitation practice imposes essential standards of healthcare services, which should be

  • Accessible from a physical and information perspective, 
  • Non discriminatory
  • Affordable
  • Acceptable from a ethical and cultural aspect 
  • Scientifically and medically appropriate and of the highest quality. 

Turning to health care, the primary goal of health care policy is to maximize the health of the population within the limits of the available resources, and within an ethical framework built on equity and solidarity principles.  Innovative technologies that offer a therapeutic benefit should be made available at an acceptable cost (28).  The implied choices, at the macro-, meso- and micro- level will be described below.  In 2005 the World Health Assembly adopted a Resolution on “Disability, including Prevention, Management and Rehabilitation” and made a number or recommendations, charging the Director-General with a number of tasks (29). The WHO regards disability as a human rights issue, a public health issue and a development issue (30,31).  

Applying the Principles of (Medical) Ethics

From a medical ethics perspective, what does this mean for medical practice?  Shared decision making is important for clinicians in all medical specialties, but particularly so for those in PRM.  The adoption of human rights as the driving force for an inclusive policy and medical ethics is the underlying principle of patient-centred rehabilitation care and PRM practice.  Advocates in decision making at government and planning level.  This chapter will address only ethical principles at a macro level, i.e. in relation to healthcare policy.

Conceptual choices made by society and health authorities may influence decisions with regard to persons with disabilities. These include the concepts of disability and responses described above.  The World Report on Disability (2011) and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006) have highlighted the importance of advocacy for person with disabilities through the WHO Global Disability Action Plan 2014-2021: “Better health for all people with disabilities” (18,27,30).  Article 1 of the UNCRPD describes the purpose of the convention: to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all people with PWD, and to promote respect for their inherent dignity. The UNCRPD is legally binding in the countries that ratified it and Article 26 “Habilitation and rehabilitation” engages states to organise, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services. 

All of these are enshrined in PRM practice and are supported by PRM specialists and rehabilitation has thus become the key health strategy of the 21st century (32).  This has to address the growing need for rehabilitation because of advances in healthcare and medical technology, ageing populations, increased survival rates and life expectancy and the greater burden of chronic and long-term conditions, which put pressure on extra costs amid shrinking budgets.  

Ethical and cultural issues aspects are also discussed in other chapters in the book and demonstrate that PRM specialists also act as advocates in advising governments and health care planners on decision making.  These chapters will show that they are also addressed in rehabilitation curricula and postgraduate training.  Professionals delivering PRM services should take time (and do) to reflect on these issues.

Rehabilitation and health systems 

Access to and funding of rehabilitation services vary from country to country and many of these variations depend on the relevant health care and social systems (33,34).  Differences are also apparent from the differences in the way that data is collected and calculated.  In some countries, there may even be regional differences.  Stakeholders include healthcare authorities (politicians as well as administration), public health organisations, payers (health and social insurance or other organisations which fund health and social care), providers, healthcare professionals, consumers and the community.  

Access to rehabilitation interventions also varies.  In some countries, this is governed by prescription through a PRM specialist, whereas, in others, referral to rehabilitation therapies can be directly by patients themselves, or by general practitioners or by other hospital specialists.  The discussion of rehabilitation across Europe has to separate highly specialist interventions, such as those provided by a PRM specialist from specialised therapies, such as pressure ulcer management and generic therapies, such as mobilising treatments after, say, an uncomplicated limb fracture.  This chapter will not be able to address all of these, as they are paid for differently, but they are all provided in one way or another. Payers and commissioners of healthcare need to be aware of the value of specialist treatments, which require a multi-professional team as opposed to a single practitioner.  They may appear expensive, but there is good evidence of their cost-efficiency in acute, post-acute and long-term settings (35,36).  PRM is present in all but one of the 34 members of the UEMS and each country needs to define what will be and will not be funded through normal resource streams. 

This book deals primarily with PRM In most European countries, PRM interventions are covered by a public insurance package, especially for specialist rehabilitation in acute settings and Chapter 8 describes the different phases of the PRM process.  However, almost everywhere there is an out of pocket supplement for the patient, usually largest in more chronic and long-term care.  Often, private insurance systems and private hospitals exist for patients, who want to complete their treatment with extra care above the provided public package.  Post-acute PRM programmes and physical therapy can be limited in duration or the number of sessions, but most of the variability exists in long-term rehabilitation. This seems to originate from historical differences, mainly between previous Eastern and Western Europe, but also between northern versus Mediterranean areas. In some countries, there is no public funding for long-term care, even more so since the recent financial crisis.  In most Central and Eastern European countries, long-term rehabilitation is usually relatively well organised and may be combined with ‘Spa-centres’.

Acute PRM services (inpatient and outpatient) are generally embedded in acute/general hospitals or in private practice (outpatient).  Post-acute services are provided in general as well as in specific hospitals/centres, while long-term services are mainly organised in specific facilities, sometimes depending on social service rather than healthcare. 

In some countries, patients have access to PRM programmes through referral to a PRM specialist, but there is a trend of referrals of patients from acute services to start early rehabilitation under the care of PRM specialists.  

Although PRM is recognised in nearly every country of Europe, the distribution of specialists is still relatively low.  There are large differences in the number of specialists by country, in their role in the health system and in their conditions of work.  Appendix 2 shows the variation in numbers of specialists by country and, while an optimal number of PRM specialists per unit of population has yet to be set across Europe, there clearly remains a disparity between states. 

Economical Burden of Disability

The Cost of Disability

The economic burden of disability assumes a greater importance to address the increase in the number of people with disabilities and the impact of greater and longer survival.  In addition, the economic crisis in Europe raises the question of how these people with will be sustained through economic support.  The growth in the numbers already places an economic and social burden on society and it is likely to get worse, as post-World War Two baby boomers pass the age of 70 years.  The true extent of the numbers of people with severe and moderately severe disability is difficult to determine, but they are certainly placing demands on health care.  One reason is that the definitions of disability often change across disciplines.  There are also different assessment tools and different public programmes for disability, leading to difficulties in comparing data from various sources (33).  In addition, the limited data on the cost components of disability makes it difficult to quantify the loss of the productivity and there are no commonly agreed methods for cost estimation1.

In order to understand better, we must use the ICF definition of disability (37) as a functional limitation that results not only from impairment or personal limitation on the daily activity, but also from the relation of a person with the environment, which involves dysfunction at one or more of three levels: impairments, activity limitations and participation restrictions.  The resulting loss of capacity, at physical or mental level, reduces the performance of some of the activities of daily living, increasing the cost of reaching a given level of well-being.  According to the World Report on Disability, the cost of disability could be classified in direct and indirect (19) (fig. 1).

Direct costs can be classified into two categories: (i) the additional costs encountered by that disabled persons and their families for daily living standards and (ii) the disability benefits provided from governments (1).  In the United Kingdom, estimates range from 11% to 69% of standard income (38).  In Ireland, the estimated cost of disability varied from 20.3% to 37.3% of average weekly income, depending on the duration and degree of limitations of these people.  It is higher in those with severe limitations (39).  14% for households in Bosnia and Herzegovina (40) are classified as containing a disabled person.

Public spending on disability programmes includes benefits for full and partial disability benefits, as well as disability-specific early retirement plans or reduced work capacity.  Expenditure is at about 2% of gross domestic product (GDP) with the inclusion of sickness benefits.  This equates to almost 2.5 times the spending on unemployment benefits and reaches about 5% of GDP in the Netherlands and Norway (40).  Estimating loss in productivity due to disability and relevant taxes is thus complex and needs statistical information.

A recent study has proposed that the cost of the disability is related to two problems (41). The first is financial.  People with a disability may have more difficulty in getting a job, retaining the job, or may get a lower income; however, they may have to use their own finances/savings to achieve satisfaction or may need a greater income just for routine activities. The second problem relates to social protection systems, which provide services through direct taxation or facilitate the environment, such as preferred parking or employment subsidies aimed to compensate for the higher costs relevant to disability in many countries (41).

In Europe, some policies address the reintegration of disabled people into the work, while others aim to compensate persons with disabilities.  According to Eurostat, public social spending for disability reached a 2% of GDP in the EU-28 in 2012, ranging from 0.7% in Cyprus to 4.4% in Denmark (41).

The European Commission highlighted in the European Disability Strategy 2010-2020 (42) the eight areas for joint action between the EU and EU member states.  These are:

  • Accessibility
  • Participation
  • Equality
  • Employment
  • Education and training
  • Social protection
  • Health, and External Action

The Role of Rehabilitation in Reducing the Cost of Disability

Rehabilitation has thus, in principle, a pivotal role in reducing the cost of disability via promoting functional recovery and increasing the function with a management of environmental factors. To reduce the cost of the disability, such a hypothesis needs to have a good cost-efficiency ratio.  Recently, two studies of cost-efficiency of inpatient rehabilitation – one for complex neurological disabilities in the UK (43) and the other for brain injury in Ireland (44) – clearly demonstrated substantial ongoing care cost savings produced by rehabilitation with mean weekly cost reductions of £760 (43) or £639 (44) for each highly dependent patient.  The cost-recovery of rehabilitation was achieved in 14.2 or 15.6 months (43,44).  It is important to note that the expected annual savings per patient in this markedly dependent group of patients at admission to inpatient rehabilitation can amount to €50,000 (44).  A residential neurobehavioral rehabilitation programme during the post-acute phase of brain injury led to cost-benefits of £1.13 million for those receiving rehabilitation in the first year following brain injury and reaching to £0.86 million for those receiving rehabilitation later after injury (> one year) (45).  These findings extend the benefit of rehabilitation services (including PRM programmes) over and above just functional improvement, but also to important cost-savings to both families and third-party payers as well as to society in general.  Cost-efficiency outcomes extend to rehabilitation in a variety of settings for diverse disabling conditions.  For instance, two studies revealed the benefits of multidisciplinary pain rehabilitation on cost savings.  There were considerable cost savings with 42.98 fewer days of sickness absence at one year when compared with patients receiving standard care (46).  The other study calculated savings of $27,119 per family in the year following admission to a three-week interdisciplinary paediatric chronic pain rehabilitation programme of physical therapy, occupational therapy, land and water-based group exercise, recreational therapies, and psychological therapies.  There were also significant reductions in the duration of hospitalization, visits to physicians’ offices, physical and occupational therapy services, psychotherapy visits and missed parents’ work days (47).  The long-term cost-efficiency of cardio-pulmonary rehabilitation has also been demonstrated (48,49). There are also benefits in terms of perceived disability, significantly lower hours of sickness absence, when a coordinated and tailored vocational rehabilitation (VR) programme is delivered by a multi- disciplinary team when compared to the controls in those with musculoskeletal disorders. The total indirect cost -savings were of the order of US$ 1,366 per person at six months and US$ 10,666 per person after one year in the intervention group (50).  Community rehabilitation programmes for long-term care in frail elderly people was additionally found to be cost-efficient with high patient satisfaction.  However, when compared with traditional in-patient rehabilitation, it did not reduce the length of hospital stays or hospital readmission rates (51).

A study on occupational musculoskeletal disorders demonstrated that early rehabilitation may result in medical cost-savings of up to 64% and disability benefits cost savings of up to 80%.  The cost of rehabilitation was also up to 56% lower with early delivery and with expected cost savings of approximately $170,000 per claim (52).  Another study calculated the long-term net cost savings at $817,836 (53).

A recent study on multiple sclerosis highlighted significant differences between patients with a low disability score against those with a high disability score – the latter making a significantly greater number healthcare visits and having more hospitalizations, worse health-related quality of life, more significant problems in work, more unemployment and a need to change or stop work, which all increased the direct and indirect costs of disability (54).  Added to this calculation should be further indirect costs of disability of 910 million Euros (accounting for ~0.5% of GDP) in a Portuguese population with rheumatic diseases in 2013 resulting from early retirement.  These figure included the high annual cost due to lost years of working life (55).

It is known that in some situations rehabilitation interventions produce further additional costs.  However, they may be associated with more improvements in clinical outcomes.  In some other situations, rehabilitation interventions may produce similar clinical outcomes at lower costs.  Rehabilitation interventions may result in savings other health care or social services costs through maintaining productivity, which had been lost due to the underlying health condition or disability.

Effects of Lack of Rehabilitation

What happens if rehabilitation and, in particular, physical and rehabilitation medicine services are not provided?  Withholding them may appear less costly, but is that cost-saving cancelled by greater expenditure on health and social care elsewhere as a consequence? (43)  Good rehabilitation provision is, therefore, an important issue in the planning and justification of specialist rehabilitation services, both for the individual and his or her family/caregiver, but also for other services and society in general.  It is known that money spent on rehabilitation is recovered with five to nine-fold savingsand that rehabilitation is effective in all phases of health conditions (22,23).  It is also know that specialised rehabilitation (as delivered by PRM services) is highly cost-efficient for all neurological conditions, producing substantial savings in ongoing care costs, especially in high-dependency patients (43).  PRM services deal with the rehabilitative needs of people with complex needs and they thus consume considerable resources in health care.  For instance, stroke patients with spasticity directly cost up to four times as much as those without spasticity (56).  

Examples of the benefits of PRM services are that 

  • early spasticity management can prevent contractures and reduce the time spent in further inpatient rehabilitation(57);
  • early supported discharge after stroke will reduce the overall costs of health care (58);
  • PRM services are associated with not only a higher return to work, but also sustain people at work by appreciating that vocational rehabilitation needs to consider all the factors required to maximise the likelihood of a sustainable return to work (59).

A person’s rehabilitation potential cannot be considered in isolation from what would have been the outcome without rehabilitation.  The question that specialist rehabilitation attempts to address is “Will the patient benefit from the rehabilitation programme in a way that would not have occurred, had the recovery been left to chance?”  The natural history of the impairment and the consequent disabilities and disadvantages play a major role in the eventual outcome following rehabilitation.  Some conditions recover spontaneously and early intervention may give the false impression that therapy has been efficacious (60,61). On the other hand, early intervention may be associated with an improved outcome even where full recovery does not occur (62).  

The lives of people with persisting disabilities and their families can be enhanced by rehabilitation, but, more importantly, the consequence of them not having rehabilitation may be to reduce independent functioning and quality of life (63).  In the acute hospital, many correctable problems, such as nutrition, swallowing, mobility and equipment issues may not be addressed as the focus is inevitably on treating the primary impairment.  This is where PRM specialists can assist in preventing complications and in ensuring an optimal level of functioning (64).  In the absence of rehabilitation complications and loss of function may occur and discharge may be delayed.  Yet health services have a statutory duty to provide rehabilitation services to meet health needs of all patients (65,66).

The following may be found in the absence of rehabilitation for a variety of conditions.

  • immobility including weakness, cardio-respiratory impairment, muscle wasting, pressure sores, spasticity, contractures and osteoporosis
  • pain
  • nutritional problems
  • swallowing problems
  • bladder and bowel problems (constipation & incontinence)
  • communication problems
  • cognitive problems and an inability to benefit from learning
  • mood and behavioural problems
  • ill-health and systemic illness from a variety of causes, e.g. urinary tract and , cardio respiratory problems, diabetes mellitus
  • complications of underlying conditions.

Knowing this, PRM services need to be involved in longer-term follow up of patients, as they move into living in the community, in order to prevent:

  • secondary health problems and social isolation
  • carers becoming exhausted by the burden of care and thus break down of the domestic situation
  • general practitioners or social workers being called on unnecessarily
  • emergency admissions back to hospital; and;
  • unnecessary placements in residential or nursing home care 
  • inappropriate and untimely prescription of disability equipment
  • inability to update disability equipment in the light of advancing technology, e.g. neuroprostheses

This short text cannot go into great detail with the effects of a lack of rehabilitation, but its overall result may be that the person is frequently left with a poorer functional capacity and quality of life.  This has been demonstrated in community settings through wastage of resources expended in acute and post-acute settings.  Several initiatives have recognised this reversal in abilities after patients are discharged home and an international expert group produced a simple easy-to-use checklist using stroke survivors as a model (67).  The checklist has now been validated and found to be useful, so that it can be used as a means identifying issues for persons with disabilities living at home or in institutional settings (68).  The experience is that many people suffer preventable complications through a lack of rehabilitation and health services end up spending more expensive resources (e.g. surgery) to retrieve the situation or simply repeating treatments, from which the patients should have “moved on”.  

Describing the effects of a lack of rehabilitation is an important issue in promoting and justifying high calibre PRM services.

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