Authors: Matthias Bethge, PhD Per von Groote, MA Alessandro Giustini, MD Christoph Gutenbrunner, MD

Health Policy

Affiliations: From the Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany (MB, CG); Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland (PvG); Swiss Paraplegic Research, Nottwil, Switzerland (PvG); and Rehabilitation Hospital San Pancrazio, Arco, Trento, Italy (AG).

Correspondence: All correspondence and requests for reprints should be addressed to: Matthias Bethge, PhD, Department of Rehabilitation Medicine, Hannover Medical School, Carl-Neuberg-StraQe 1, 30625 Hannover, Germany.

Disclosures: Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

0894-9115/14/9301(Suppl)-S4/0 American Journal of Physical Medicine & Rehabilitation Copyright * 2013 by Lippincott Williams & Wilkins DOI: 10.1097/PHM.0000000000000016



The World Report on Disability A Challenge for Rehabilitation Medicine ABSTRACT Bethge M, von Groote P, Giustini A, Gutenbrunner C: The world report on disability: a challenge for rehabilitation medicine. Am J Phys Med Rehabil 2014;93(Suppl):S4YS11. To analyze the life situation of people with disabilities and to summarize the evidence of measures to support their participation, the World Health Assembly requested the World Health Organization to produce a World Report on Disability. This article highlights some of the main contents of the World Report on Disability, with a special focus on the rehabilitation chapter. It starts by presenting epidemiologic findings on the global disability prevalence, views on the role of rehabilitation medicine, discrepancies between met and unmet needs, and challenges for the quality of rehabilitation services and ends with an outlook on the report’s recommendations and efforts toward their implementation. Key Words: World Health Organization, Rehabilitation, Persons with Disability, Epidemiology, Policy


ince the 1970s, there has been growing awareness that disability is a human rights issue and that people with disabilities are particularly vulnerable to discrimination and segregation. Accordingly, disability is increasingly understood as a human experience that occurs as the interaction of a person with a health condition or impairment with his/her environment. This implies that disability is not an attribute of the person but that the environment may disable a person in her/his participation. Accordingly, improved social participation can be achieved by removing these attitudinal and environmental barriers. To strengthen the rights of people with disabilities and to encourage states to take appropriate measures to eliminate discrimination against persons with disabilities, the United Nations adopted the Convention on the Rights of Persons with Disabilities1 in 2006. Moreover, the World Health Assembly resolution 58.23 requested the World Health Organization to produce a World Report on Disability (WRD) to analyze the life situation of people with disabilities and to summarize the evidence of measures to support their participation. Nearly 380 clinicians, researchers, policy makers, and persons with disabilities worked for 3 yrs on this report.2 They reviewed people’s understanding of disability, identified barriers and gaps in service access and availability, and developed numerous recommendations on how to promote the inclusion and dignity of persons with disabilities. This article highlights some of the main contents of the WRD, with a special focus on the chapter dedicated to rehabilitation. The authors start by summarizing Am. J. Phys. Med. Rehabil. & Vol. 93, No. 1 (Suppl), January 2014

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the report’s estimation of the global disability prevalence rate. Second, the authors tackle the report’s view about the role of rehabilitation medicine. Third, this is linked to discrepancies between met and unmet needs. Fourth, the authors outline challenges to six areas that fundamentally impact the quality of rehabilitation services (policies and legislation, funding mechanisms, human resources, service delivery, affordable technology, and research and evidence-based practice). Fifth, the authors give a brief synopsis of the report’s recommendations and efforts toward their implementation.

DISABILITY PREVALENCE The report’s estimation of the global disability prevalence rate is based on epidemiologic data from the World Health Survey3 of 2002Y2004, a multinational health and disability survey that used a single set of questions to collect comparable health data across countries. It measured disability in terms of difficulties in eight domains of health and functioning (affect, cognition, interpersonal relationships, mobility, pain, sleep and energy, self-care, and vision) on a 5-point scale ranging from Bno difficulty[ to Bextreme difficulty.[ A composite score was calculated, with values from 0 to 100. Finally, a threshold of 40 points was used to distinguish persons with and without disabilities. Across all 59 participating countries, the World Health Survey prevalence rate in the adult population 18 yrs or older was 15.6%. This rate exceeds earlier estimates from the 1970s, which suggested a global disability prevalence of approximately 10%.4 On the basis of the 2010 world population estimates and including children, it was estimated that more than a billion people are living with disability. A more detailed look on the data reveals four major issues: 1. Older people have a substantially higher risk for disability. The disability rate is 38.1% for persons 60 yrs or older compared with 8.9% for persons aged 18Y49 yrs. Because of population aging (the number of people 60 yrs or older is expected to increase from 605 million in 2000 to 2 billion by 2050),5 the disability prevalence rate will probably increase rapidly in the next years. 2. The World Health Survey indicated that women (19.2%) are more vulnerable than men (12.0%) to disability and need more intensive support to achieve equal access to rehabilitation services. 3. Disability prevalence rates are clearly associated with personal wealth. There were 20.7% of persons with disability in the lowest wealth quintile vs. 11.0% in the highest wealth quintile.

4. The results of the World Health Survey imply that development must be a major issue of development policy because disability prevalence rates varied strongly between higher (11.8%) and lower (18.0%) income countries.

THE ROLE OF REHABILITATION MEDICINE The WRD defines rehabilitation as Ba set of measures that assists individuals who experience or are likely to experience disability to achieve and maintain optimal functioning in interaction with their environment[ (p. 308)2 and distinguishes rehabilitation from strategies and policies at the societal level to promote the inclusion of people with disabilities. Rehabilitation is cross-sectoral and usually requires the cooperation of different professions to cope with the complex biopsychosocial challenges of disability. Besides therapy and assistive technologies, rehabilitation medicine is thereby stated as a main measure to improve individual functioning. Its focus on functioning is unique among all medical disciplines, making it the medicine of functioning.6,7 The process of rehabilitation is described as a cycle that starts by identifying the patient’s problems and needs, relating the problems to relevant factors of the person and the environment, defining therapy goals, planning and implementing the appropriate interventions, and assessing the effects.8 Moreover, repeated assessments of rehabilitation outcomes may identify further problems and unmet needs.8 The intended benefits of rehabilitation measures are to achieve or maintain optimal functioning of individuals in interaction with their environment. More specifically, this means preventing the loss of function (e.g., exercise for elderly persons to prevent sarcopenia9), slowing the rate of loss of function (e.g., cognitive rehabilitation for people with early-stage Alzheimer disease10), improving or restoring function (e.g., work hardenings or functional restoration programs for patients with chronic low back pain11,12), compensating for lost function (e.g., gait training after a limb amputation13), or maintaining current function (e.g., cognitive-behavioral therapy or relaxation for patients with migraine14). As indicated by the rehabilitation cycle, appropriate measurement of needs and outcomes is essential for the choice of measures and treatments. Narrow definitions of functioning that refer solely to a person’s impairment will restrict the choice of measures to single medical or physical treatments. However, the understanding of disability as represented by the International Classification of Functioning, Disability and A Challenge for Rehabilitation Medicine

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Health15 has increasingly extended rehabilitation aims on outcomes of activity and participation during the past years. This is reflected by the use of performancebased measures to assess the success of rehabilitation as usually done by functional capacity evaluation if maximal medical improvement is achieved16,17 as well as the increasing use of participation measures as return-to-work rates in Cochrane reviews11,18Y21 when analyzing the effectiveness of rehabilitation programs. Furthermore, researchers have developed a range of novel activity and participation assessments (e.g., the World Health Organization Disability Assessment Schedule II22 and ICF Measure of Participation and Activities screener [ICF] S23) and assessments linking ICF categories and ICF core sets to item response theory24,25 that appropriately reflect the complexity of disability and functioning.

MET AND UNMET NEEDS The need for services is different from actual service provision and must also be distinguished from expressed wishes and desires for services.26 Furthermore, need estimates differ from disability prevalence rates and must consider who may benefit from rehabilitation services.26 Although estimates of need and unmet needs are rarely available, some figures indicate that latent needs for rehabilitation do not always evolve into services. For example, German pension insurances provide medical rehabilitation to prevent disability pensions, but half of their disability pensioners did not receive rehabilitation services before health-related early retirement.27 Unmet needs restrict participation, increase dependency, and amass direct and indirect costs for supporting families, communities, and societies. Because of the projected demographic development, the need for rehabilitation is expected to increase. The higher disability rates in vulnerable groups (women, older persons, and poor people) and low-income countries imply greater needs in these groups and countries. Proxy measures of unmet needs are sometimes assessed in terms of unrealized wishes and desires. Several such studies have shown large gaps between wished and received services. In Malawi, Namibia, Zambia, and Zimbabwe, only onequarter to one-half of persons who expressed a need for medical rehabilitation actually received these services.2 These data might underestimate the need for services if there is insufficient information about appropriate measures. These overestimate need if people express needs although they will probably not benefit from a particular service. For instance, there is evidence that physical conditioning programs are


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effective in patients with chronic but not with acute low back pain.11 Persons with acute low back pain may wish for such a program but will not benefit from it.

WHERE ARE THE CHALLENGES? The authors of the WRD identified several domains that comprise barriers challenging equal access to rehabilitation services and the quality of these services. Specifically, these are (1) policies and legislation, (2) funding mechanisms, (3) human resources, (4) service delivery, (5) affordable technology, and (6) research and evidence-based practice.

Policies and Legislation Policy creates the legal framework for rehabilitation services. However, in a global survey conducted in 2005, a total of 42% of countries stated that they had no rehabilitation policies.28 Countries with good legislations often lack consistent implementation, resulting in the uneven distribution of services and infrastructure, as observed in some central and eastern European countries.29 Use of needed rehabilitation services depends on their availability, and the availability of services is still a problem in many countries. A major issue seems to be the division of responsibility, which makes it difficult to coordinate care on a national level. This describes the situation not only in developing countries, as indicated by a recent report of 29 African countries,30 but also in highly developed countries such as Germany, whose healthcare system is characterized by strong segmentation.31

Funding Mechanisms for Rehabilitation Rehabilitation must be affordable. Otherwise, the benefits of rehabilitation services will be unevenly distributed and will cement social inequalities. Many of the assistive devices needed by persons with disabilities are purchased directly by the persons in need or their families, and sometimes, persons with disabilities simply do not have the means to pay for the needed measures.32 Globally, public spending on rehabilitation is low: even in Organisation for Economic Co-operation and Development (OECD) countries, it is estimated to be only 0.02% of the annual gross domestic product.33 Cost control is a common answer to the challenges of economic crises in many countries. However, cost control must relate to the needs of the persons who could benefit from rehabilitation services, especially if Brehabilitation is a good investment[ that Bbuilds

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human capital[ (p. 107)2 and prevents loss of income and poverty and promotes tax revenue. Standardized data on needs are the foundation on which countries can begin to plan spending on rehabilitation. Without these, data rehabilitation budgets will not reflect needs. Even if the identified needs will reveal astonishing gaps between needs and available services, this is a necessary first step to formulate aims and milestones of budget development. Moreover, publicly documented discrepancies will increase pressure to allocate resources and existing services fairly and effectively and to set priorities to target the most vulnerable persons with the greatest needs, especially poor people with disabilities.

Human Resources In many parts of the world, the lack of rehabilitation physicians and specialists poses a challenge. In some countries (e.g., Australia, Canada, and the United States), this shortage is limited to rural and remote areas. In others, rehabilitation specialists simply are not available. A survey in sub-Saharan Africa identified only six rehabilitation physicians for more than 780 million people, whereas Europe and the United States have more than 10,000 and 7,000, respectively.2 Consequently, the role and the tasks of rehabilitation physicians in developing countries may fundamentally differ from those in developed countries. For instance, the focus may shift to training and coordinating community-based and other basic rehabilitation services. Indeed, to specifically train specialists in physical and rehabilitation medicine to cope with this challenge is probably one of the major tasks in the future work of the International Society for Physical and Rehabilitation Medicine. Discrepancies between developing and developed countries are also large for other rehabilitation professionals, such as psychologists, social workers, physiotherapists, and occupational therapists. The main reason for the shortage of rehabilitation professionals is the lack of appropriate educational programs in many countries. Some countries such as China, India, Lebanon, Myanmar, Thailand, Vietnam, and Zimbabwe have therefore established midlevel trainings with shorter training durations.2 Similar reasons have prompted the development of community-based rehabilitation with workers who generally have only minimal training but are able to provide basic rehabilitation services. The authors of this article also believe that there is a strong need to implement rehabilitation contents in the education of other healthcare workers, including nurses and physicians. If development aids are offered, these

should follow the principle of help for self-help and be used to build training capacities instead of sending professionals to do the work themselves.34 Finally, high-resourced countries currently benefit from a wave of trained healthcare workers emigrating from less-resourced countries. There is a strong need for multinational agreements to stop this flow of workers to stabilize rehabilitation delivery in lessresourced countries.

Service Delivery Distance and inaccessibility are major barriers to the use of rehabilitation services, especially for elderly persons and persons with mobility difficulties. Because most of the persons need low-cost and basic to modest services, development strategies must balance local services integrated in existing healthcare settings and facilities that offer intensive multiprofessional rehabilitation. Referrals between different levels of care are common and necessary. Structured and coordinated referral systems help to ensure the continuity of care and to improve patient outcomes. In Germany, integrated care for total hip and knee arthroplasty led to the introduction of joint contracts and reimbursements for operating hospital and rehabilitation centers instead of separate contracts for both providers. This development was associated with intensified communication between providers and better functioning of patients.31 Finally, community-based rehabilitation is an important source that accelerates the supply of services. A meta-analysis of community-based care of elderly persons after hospital discharge in high-resourced countries showed that these interventions reduced the number of falls, decreased admissions to nursing homes and hospitals, and improved functioning.35 Interventions by community-based rehabilitation workers might be simple but have a big impact on the patient’s well-being, for instance, to ensure sufficient active and passive movements to prevent contractures or pressure ulcers in elderly patients.

Affordable Technology Lack of affordable assistive technology can disable people. Some countries such as Vietnam and Nepal at least partly abandoned import taxes for disability-related assistive technologies to promote affordable access.2 Moreover, centralized large-scale purchasing reduces costs. Even if assistive devices are available, they might not fit the environment. However, devices must meet both environment and user requirements. The use of wheelchairs is quite challenging in the Himalayan Mountains, and, at minimum, proper training and adequate follow-up A Challenge for Rehabilitation Medicine

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are essential for their continued use. Locally manufactured devices will probably consider local demands better, and their follow-up support is probably less expensive. Finally, a discussion of assistive technologies has to consider the incredible development of Web-based technologies during the last 20 yrs. If available, Web-based technologies enable various styles of communication between persons with disabilities, between person with disabilities and experts, and between experts. The use of Web-based rehabilitation services has shown promising results in a variety of health conditions.36Y40

trolled trials, cohort studies, case studies, or the practitioner’s experience can also be used. In more general terms, no evidence simply means that there are no eligible studies on a specific topic. It does not mean that an intervention is not effective. Some populations with disability, particularly those with rare health conditions, are too small for large-scale trials. Multicenter and multinational studies can overcome such problems. Consequently, linking universities and rehabilitation providers across countries in joint research activities is a major challenge of future rehabilitation science.

Research and Evidence-Based Practice


Evidence-based practice attempts to use interventions that promise the most success and therefore refers to the best evidence available.41,42 Researchers must provide this knowledge using the most rigorous methods possible. Moreover, both researchers and clinicians are responsible for bridging the gap between research and practice. Researchers must disseminate their findings in such a way that it is meaningful for practitioners, and clinicians must review the most recent research, systematic reviews, and guidelines to ensure that their actions are appropriate. Health service research and feasibility studies should determine whether it is possible to transfer findings from a highly controlled study setting to typical rehabilitation settings. People with disabilities need good evidence to support their decision making, and lack of evidence is probably a major barrier to the use of services. Policy makers, especially, also need to consider the costs of treatments to make decisions about the development of services. Sustainable health policy therefore needs to grant and to support cost-effectiveness studies. At present, the quantity and the quality of rehabilitation research depend on the related health condition. For example, there is significant research on rehabilitation for low back pain and spinal cord injuries; other health conditions such as muscular dystrophy or cystic fibrosis are less recognized in research. Health service research about needs for and provision of rehabilitation services and modifying access barriers and facilitators has also received less attention. A wide range of rehabilitation measures, anticipated outcomes, and settings exists. Therefore, general conclusions about rehabilitation effects cannot be drawn. The absence of randomized controlled trials is sometimes mistakenly classified as no evidence. However, if no randomized controlled trials are available, evidence from nonrandomized con-

The authors of the WRD developed a set of recommendations for each of the abovementioned domains. Their rehabilitation-related recommendations are summarized in Table 1. The primary challenge is deciding how to implement these recommendations. As evidenced by the summary of the report’s main contents and the eight articles in this supplement that provide specific national insights on challenges, gaps ahead of change, and initiatives to bridge these gaps, this special issue therefore also looks for the scientific base that could support implementation actions. Von Groote and coauthors comprehensively reviewed the literature on implementation research for their article and analyzed how to meet the challenge of getting publications such as the WRD implemented at different levels including health policy, service delivery, and practitioner’s work. They thereby identified three main questions to answer when planning and preparing implementation actions: Where are the gaps? What innovations are needed to close the gaps? and How can these innovations be implemented to close the identified gaps? Moreover, they elaborated eight essential components of an implementation framework that need to be considered in implementation work and outlined a variety of activities that can be successfully used to achieve implementation. The authors assume that this work has the potential to be a major guidance framework for future implementation efforts by the International Society for Physical and Rehabilitation Medicine as well as national and regional societies of physical and rehabilitation medicine. The high relevance of the WRD for rehabilitation medicine was clearly reflected in this year’s International Society for Physical and Rehabilitation Medicine world congress in Beijing, where the WRD was the central theme of the opening plenary lectures. Moreover, the WRD was comprehensively discussed in

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TABLE 1 Recommendations of the WRD regarding rehabilitation (pp. 122Y123) Subject of Recommendations Policies and regulatory mechanisms

Financing: develop funding mechanisms to increase coverage and access to affordable rehabilitation services

Human resources: increase the numbers and capacity of human resources for rehabilitation

Service delivery (1): where there are none, or only limited, services introduce minimum services within existing health and social service provision Service delivery (2): Where services exist, expand service coverage and improve service quality Service delivery (3): All settings Technology: Increase access to assistive technology that is appropriate, sustainable, affordable, and accessible

Research and evidence-based practice

Strategies and Actions Assess existing policies, systems, services, and regulatory mechanisms; identify gaps and priorities to improve provision Develop or revise national rehabilitation plans, in accord with situation analysis, to maximize functioning within the population in a financially sustainable manner Where policies exist, make the necessary changes to ensure consistency with the CRPD Where policies do not exist, develop policies, legislation, and regulatory mechanisms coherent with the country context and with the CRPD. Prioritize setting of minimum standards and monitoring Public funding targeted at persons with disabilities, with priority given to essential elements of rehabilitation including assistive devices and people with disability who cannot afford to pay Promoting equitable access to rehabilitation through health insurance Expanding social insurance coverage Public-private partnership for service provision Reallocation and redistribution of existing resources Support through international cooperation including in humanitarian crises Where specialist rehabilitation personnel are in short supply, develop standards in training for different types and levels of rehabilitation personnel that can enable career development and continuing education across level Establish strategies to build training capacity in accord with national rehabilitation plans Identify incentives and mechanisms for retaining personnel especially in rural and remote areas Train nonspecialist health professionals (physicians, nurses, primary care workers) on disability and rehabilitation relevant to their roles and responsibilities Developing basic rehabilitation services within the existing health infrastructure Strengthening rehabilitation service provision through community-based rehabilitation Prioritizing early identification and intervention strategies using community workers and health personnel Developing models of service provision that encourage multidisciplinary and client-centered approaches Ensuring availability of high-quality services in the community Improving efficiency by improved coordination between levels and across sectors Include service users in decision making Base interventions on sound research evidence Monitor and evaluate outcomes Establishing service provision for assistive devices Training users and following up Promoting local production Reducing duty and import tax Improving economies of scale based on established need To further enhance capacity, accessibility, and coordination of rehabilitation measures, the use of information and communication technologies (telerehabilitation) can be explored Increase research and data on needs, type and quality of services provided, and unmet need (disaggregated by sex, age, and associated health condition) Improve access to evidence-based guidelines on cost-effective rehabilitation measures Disaggregate expenditure data on rehabilitation services from other healthcare services Assess the service outcomes and economic benefits of rehabilitation

WRD.2 CRPD, Convention on the Rights of Persons with Disabilities.

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The World Report on Disability: a challenge for rehabilitation medicine.

To analyze the life situation of people with disabilities and to summarize the evidence of measures to support their participation, the World Health A...
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