Scaling up rehabilitation worldwide with the new WHO guideline: is it enough?

CRITIQUE/COMMENTARY

By Adora Chui 

The World Health Organization (WHO) is putting its weight behind rehabilitation with the recent release of their guideline on Rehabilitation in Health Systems (1). Intended to support stakeholders in the expansion and implementation of equitable rehabilitation services, this guideline targets low- and middle-income countries (LMICs) as unmet needs for rehabilitation are experienced most intensely in these regions. Since one in seven people worldwide are estimated to live with disability, the global need for rehabilitation is forecasted to increase with an aging world population (2). Further, as individuals with chronic conditions are living longer, coordinated efforts between governments, international organizations, funding agencies, and service users and providers are essential. “A major scaling up of rehabilitation services” (1) is crucial to enable people to participate fully in work, play, and everyday life with improved health and optimal functioning in their environments. Having acknowledged this global challenge, the WHO is spearheading the critical work of making rehabilitation accessible and affordable.

Intended to be broadly applicable, the guideline is necessarily general. What then are the strengths, limitations, and applications of this document for stakeholders?  Being a Canadian occupational therapist with work experience in research contexts, my perspective is rooted in being a service user and provider within a system of universal health care within a high-income country. Therefore, my appraisal of the guideline is couched from this experience by my doctoral training in rehabilitation sciences. This article presents a critique of the WHO Rehabilitation in Health Systems guideline based on its ethical foundations and research rigour. With the aim to foster discussion in rehabilitation communities across nations on the use of this guideline, this critique concludes with suggestions for its application.

Ethical foundations

The objective of the Rehabilitation in Health Systems guideline is a lofty one: “To provide evidence-based, expert-informed recommendations to guide governments and other stakeholders in developing and extending rehabilitation services and delivering them equitably at all levels of health systems and on all service delivery platforms” (1). The impetus for strengthening rehabilitation is reinforced by two WHO documents grounded in human rights and rooted in a biopsychosocial conceptualization of disability – the Convention on the Rights of Persons with Disabilities, and the Global Disability Action Plan 2014-2021. However, the guideline was developed without explicit participation of persons with disabilities, undermining its ethical solidarity.

The Convention on the Rights of Persons with Disabilities (CRPD) came into effect in 2008, entitling people with disabilities to civic, cultural, economic, political, and social freedoms (3). Of primary relevance to the Rehabilitation in Health Systems guideline are two articles of this treaty. First, persons with disabilities “have the right to the highest attainable standard of health without discrimination on the basis of disability” (Article 25). Second, persons with disabilities must be enabled “to attain maximum independence and ability, [and] countries are to provide comprehensive habilitation and rehabilitation services in the areas of health, employment, and education” (Article 26).

As a human rights document, the CRPD provides a foundation for nations to deliver health services equitably for persons with disabilities. These Articles imply that rehabilitation should be available across the lifespan and continuum of care without discrimination due to disability, and that government must respond with requisite policies and interventions. To date, 173 nations have ratified the CRPD treaty, legally committing to enact these Articles (3); subsequently, the recommendations in the Rehabilitation in Health Systems guideline can assist governments to deliver targeted rehabilitation services.

Aside from advocating based on human rights, the WHO prioritizes disability as an international public health issue. The Global Disability Action Plan 2014-2021 (GDAP) aims for persons with disabilities to realize their best possible health, functioning, and well-being through three core objectives. Strengthening and extending rehabilitation is the second of these objectives (4). However, the Rehabilitation in Health Systems guideline appears to fall short of certain values outlined in the GDAP. Paragraph 16 states that persons with disabilities “should be fully consulted and actively involved in all stages of formulating and implementing policies, laws, and services that relate to them.” Paragraph 40 describes barriers due to “insufficient consultation with and involvement of persons with disabilities in the provision of rehabilitation and habilitation services.”

Despite the ideals of the CRPD and GDAP, the Rehabilitation in Health Systems guideline does not highlight involvement of persons with disabilities. Although applications were solicited from organizations of disabled peoples in LMICs to engage in guideline research (5), none were declared to have supported development of the actual guideline. Of the 44 individuals listed as contributors to the recommendations, only two people belonged to organizations representing persons with disabilities. What weight does this guideline truly carry when it is more the creation of international experts and less the involvement of persons with disabilities?

Rather, in attempting to include the perspectives of persons with disabilities, the WHO guideline creators completed a systematic review of the literature on values, preferences, acceptability, and feasibility was undertaken (1). However, minimal literature was available, ranging from 0 to 23 records per recommendation (mean= 5.7; median= 2). Although this procedure strengthens the trustworthiness of the guideline, given the dearth of stakeholder literature, involvement of persons with disabilities should have been highly prioritized. During guideline development, an online, self-administered stakeholder survey was conducted (1). Stakeholders were invited to participate if they were policymakers, administrators, health care professionals, or rehabilitation service users (1). Presumably the final category of eligible participants consisted of persons with disabilities, but their representation is unstated.

Persons with disabilities are anticipated to play a greater role in guideline dissemination since the WHO stakeholder network includes organizations for disabled peoples, and because implementation at the administrative level should occur via “participatory, consensus-driven planning” (1). While these suggestions are admirable, involving persons with disabilities throughout guideline development would have lent greater credence. This missed opportunity to strengthen the ethical foundation of the Rehabilitation in Health Systems guideline may prove costly in the weakened adoption of recommendations.

Research Rigour

While a thorough and well-documented method was used to develop the Rehabilitation in Health Systems guideline, for those areas of literature where gaps were identified, greater transparency is warranted to justify the finalized recommendations and statements. This section highlights the changes in scope from the initial call for  proposals to guideline release, examining the methodology used in guideline development.

The research process underlying guideline development began with a Call for Research Proposals (Figure 1, see PDF link at end of article) containing seven work packages available for bidding (5). The Rehabilitation in Health Systems guideline was envisioned to address six building blocks required to strengthen health systems (5). These six building blocks were reflected in the work packages within the Call for Research Proposals, but only two (service delivery, financing) were undertaken to inform the rehabilitation guideline. Presumably the remaining work packages were either not bid upon or that the quality of the applications was inadequate. The inference is that against the WHO’s own standard, the guideline is not yet comprehensive and that further guidelines are required to progress rehabilitation worldwide.

The 25-member team from the Institute for Work and Health (IWH) and the University of Toronto in Toronto, Canada was awarded the work package on service delivery. They contributed five of the seven recommendations presented in Table 2 (6). The systematic review underpinning the financial Recommendations F and G were undertaken by another group comprised of two persons (1). The disparity in literature review capacity between teams call into question whether pertinent literature was missed in the work package on financing, because 32 248 records were supposedly screened by those two individuals.

The Rehabilitation in Health Systems guideline (see Table 1 for summary; see PDF link at end of article) consists of seven evidence- and expert-based recommendations plus two good practice statements. Recommendations were developed according to the WHO Handbook for Guideline Development (7), but the good practice statements on assistive products were constructed separately. The Guideline Development Group based these two statements on indirect evidence and expert opinion, rationalizing that they had “sufficient confidence in [assistive products] benefits that the process of evidence collection and appraisal would have been unproductive and a poor use of resources.” (1)  A truly evidence-based approach would have been to conduct a systematic literature search as done with the recommendations, and if a small evidence pool was found, then possibly defer to best practice statements. This procedure would more closely fulfill the assertion within the Call for Research Proposals where “the resultant rehabilitation guidelines must be based on the best available evidence” (1).

However, stringent methodology was utilized to arrive at the guideline recommendations. Each recommendation was based on a review question, systematic retrieval of appropriate literature, assessment of evidence using the criterion GRADE method (Grading of Recommendations Assessment, Development and Evaluation), and consensus decision-making per recommendation (1). An internationally-used approach, GRADE links evidence quality to recommendations for predefined outcomes of import (8). The Rehabilitation in Health Systems guideline indicates that strong evidence was only located for Recommendations C and D. Published literature precisely related to the research question could not be located for three recommendations (A, F, G), and limited evidence was available for two recommendations (B, E) (1). Therefore, though the GRADE approach was followed closely, the evidence base supporting the recommendations is limited and variable.

Further, the strength of recommendation is determined by additional considerations assessed by researchers. These factors include the degrees of uncertainty between desirable and adverse effects, in target group values and preferences, and whether the intervention is a prudent use of resources (9). Therefore, greater onus is placed on expert judgment which accounts for the seemingly unrelated strength of recommendation and quality of evidence. For example, the quality of evidence was very low for Recommendations B and G, but Recommendation B is strongly recommended whereas Recommendation G is conditionally recommended. Anticipating questions regarding this discrepancy, the guideline developers ask “that users of this document not assume that a recommendation based on low- or very low-quality evidence is weaker or less important than those based on moderate- or high-quality evidence” (1).

However, this expectation obligates guideline users to trust the experts; consequently, transparency of reporting is essential. While efforts were made to capture literature and outcomes from LMICs, evidence originated predominantly from high-income countries (1). Subsequently, IWH researchers described the difficulties encountered during deliberations where evidence requiring “downgrading” within the GRADE system due to its equivocal relevance to LMICs (6). Further, once findings from the systematic literature reviews were submitted, the Guideline Development Group had to vote on which research questions would become recommendations. This vote would also have considered the relevance of evidence to LMICs, but again transparency of reporting is found wanting.

Since the overall yield of evidence was slight, sizeable trust rests on guideline developers who had to reach consensus for each recommendation. Intended to help stakeholders apply the recommendations, remarks are provided for each recommendation, yet are wide-ranging in their usefulness. For instance, Recommendation E that hospitals should include specialized rehabilitation units for inpatients with complex needs is an exemplar for the nuances of translating evidence into use. The researchers caution that specialized units should be contingent upon availability of a multidisciplinary workforce and sufficient funding, and that these units cannot replace rehabilitation available in general wards, nor in the community (1). Convincingly, Recommendation E is a strong recommendation based on high quality of evidence, suggesting that better quality evidence leads to better utility of recommendations.

In contrast, Recommendation G that where health insurance exists or is to become available, it should cover rehabilitation services, is a conditional recommendation based on very low-quality evidence. The remarks on its application are vague (“This recommendation does not endorse any particular method or arrangement of health insurance but indicates that, where it is used, rehabilitation should be covered” [1]) and are exceedingly difficult to apply in high-income countries, let alone in LMICs. Although somewhat opaquely developed from a heterogeneous literature base, the Rehabilitation in Health Systems guideline nevertheless represents a substantial step forward in the use of research evidence to strengthen rehabilitation within LMICs.

Applied Usefulness

Having considered the ethical foundations and research rigour of the Rehabilitation in Health Systems guideline, what is the applicability and usefulness of this landmark document? Branching from this WHO guideline, I suggest three opportunities for governments of LMICs, persons with disabilities, and rehabilitation communities in high-income countries to advance rehabilitation in health systems internationally.

First, although this rehabilitation guideline has limitations, the strengths greatly outweigh the risks of remaining at the status quo. Governments cannot afford to wait as delaying action is the costlier option, financially and ethically. Just as clinicians within an evidence-based framework must decide on a course of action after reflecting on their personal competencies, patient preferences, and research evidence (10), governments must act now to implement this rehabilitation guideline within their national contexts using the best available evidence while considering stakeholder preferences. The WHO, United Nations, and World Bank have committed to strengthening rehabilitation in health systems globally (6), so momentum is growing. Governments can leverage this investment into immediate action and monitor the implementation of recommendations using the indicators provided in the guideline (e.g. Recommendation C that three or more different types of rehabilitation professionals provide services in the country).

Second, the WHO expects the Rehabilitation in Health Systems guideline to have an “unusually long shelf life of 30 years” compared with the usual five-year currency of clinical practice guidelines (6). This anticipation is due to the time required for large-scale improvements at the systems level, funding to expand the rehabilitation workforce, and beliefs that the evidence base will be slow to change. An extended shelf life should allow plentiful opportunities for persons with disabilities to have integral roles in guideline implementation. Organizations for disabled peoples can advocate for representatives to be centrally involved in government consultations, strategic planning, and policy development. They can also promote regional awareness of their rehabilitation needs and hold governments that have signed the CRPD accountable to their legal commitment. Having persons with disabilities in influential roles will ensure health system changes are appropriate and guard against marginalization. Given the high-level statements provided within the guideline, persons with disabilities must be engaged in translating recommendations to their local situations.

Third, rehabilitation communities in high-income countries can address the seven research priorities identified within the Rehabilitation in Health Systems guideline. As these needs were evident from the available literature – the majority of which was conducted in high-income countries – high-income countries themselves stand to address these gaps. Also, governmental, professional, and research groups can collaborate with LMICs to increase their capacity to conduct independent research. In return, rehabilitation networks in high-income countries may discover efficient and effective ways of delivering rehabilitation, such as to geographically remote locations within their own nations. Academic institutions in high-income countries can instill within their trainees an awareness of global rehabilitation needs, and champion knowledge exchanges between rehabilitation professionals from their nations and LMICs. Importantly, organizations of disabled peoples from high-income countries have much insight to offer and to receive from their LMIC counterparts.

The global need for rehabilitation services continues to intensify and international efforts are required to invest in rehabilitation. Although the WHO Rehabilitation in Health Systems guideline is targeted to LMICs, the worldwide rehabilitation community has a role to play. Despite limitations, this guideline is the best available resource to government leaders and health policymakers to improve outcomes for persons with disabilities and their societies by scaling up rehabilitation. As a global village and rehabilitation community, let us bring a concerted response to strengthening rehabilitation by its ethical foundation, research rigour, and participatory action.

References

  1. World Health Organization. Rehabilitation in health systems. Geneva: WHO; 2017.
  2. World Health Organization, The World Bank. World report on disability. Geneva: WHO; 2011.
  3. United Nations. Convention on the rights of persons with disabilities and optional protocol [Internet]. 2006. [cited 2017 May 6]. Available from: http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
  4. World Health Organization. Global disability action plan 2014–2021: better health for all people with disability. Geneva: WHO; 2015.
  5. World Health Organization. Call for research proposals [Internet]. Geneva: WHO; 2013. [cited 2017 May 6]. Available from: http://www.who.int/disabilities/media/news/2012/12_12/en/
  6. Furlan A, Irvin E. WHO guideline on rehabilitation in health systems. Institute for Work and Health Plenary; 2017 Apr 18; Toronto, Canada.
  7. World Health Organization. Handbook for guideline development, 2nd ed. Geneva: WHO; 2014.
  8. Schünemann H, Guyatt G, Oxman A. Criteria for applying or using GRADE [Internet]. GRADE Working Group; 2016. [cited 2017 May 6]. Available from: http://www.gradeworkinggroup.org/docs/Criteria_for_using_GRADE_2016-04-05.pdf
  9. Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, Schünemann HJ, for the GRADE Working Group. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. British Medical Journal. 2008; 336:924.
  10. Sackett DL, Rosenberg W, Gray JA, et al. Evidence based medicine: what it is and what it isn’t. British Medical Journal. 1996; 312:71-2.

Supplementary File – WHO Guideline