Franklin, Delengowski, and Yeo have made a strong case for the importance of cancer rehabilitation. Their synthesis points to several important challenges that remain if we are to bridge the existing chasm between oncology and the rehabilitation sciences. These challenges include: (1) a paucity of outcomes evaluation metrics; (2) underdevelopment of the evidence base for cancer rehabilitation; (3) the need for workforce development; and (4) the absence of a health policy framework for cancer rehabilitation to support optimal service delivery, access to care, and reimbursement.
As Franklin and colleagues point out, the current measurement system to screen for and address oncology rehabilitation needs is suboptimal. While instruments exist to evaluate selected cancer rehabilitation outcomes, many of the standard outcome measures in rehabilitation science have had limited testing in cancer samples. Studies of established rehabilitation outcome measures are needed to examine their validity, and to establish normative values, sensitivity to change, and the minimum clinically important difference in cancer samples. Fundamental to efforts to strengthen outcomes-evaluation metrics in the field of cancer rehabilitation is the need to refine the lexicon we apply in cancer care when describing functional goals and outcomes. Terms such as performance status, functional status, functional performance, capacity and reserve, functional impairment, and functional loss may be used imprecisely in oncology specialty care, and the limited conceptual attention given to function, distinct from quality of life or symptom burden, in cancer care has slowed our progress in the areas of measurement, intervention, and policy.
The authors highlight the important role of performance-based measures in assessing rehabilitation needs. Though performance-based measures have had limited application to date in oncology,[1–5] studies in other chronic illnesses suggest that performance-based measures offer complementary and nonredundant information to that gathered by self-report.[6–8] Performance-based indicators are reproducible and safe to perform using prescribed procedures, and they avoid reporter bias as well as issues of response shift that may be inherent in patient self-report. If performance-based measures are to assume a more prominent role in evaluating cancer rehabilitation outcomes, however, research is needed to gauge their psychometric and clinimetric properties in cancer populations, and to inform guidelines for interpretation including normative values and sensitivity to change at different points in the cancer treatment trajectory.
At the same time, significant progress has been made in the area of patient-reported outcome (PRO) measures for oncology rehabilitation. For example, relative to screening, the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) initiative has applied contemporary psychometric approaches to the development of computer-adaptive testing(CAT) for a wide range of patient-reported outcomes of importance to rehabilitation. PROMIS measures have been developed to evaluate physical functioning, and to detect symptoms such as fatigue, pain, and depression, which may be prominent contributors to declines in physical function in cancer survivors. PROMIS measures have the advantages of producing precise assessments efficiently and reliably, and do not demonstrate prominent ceiling or floor effects even when used to evaluate patients who are significantly different from the average individual. The use of a common set of metrics such as PROMIS also promotes outcomes evaluation across time and settings, and can facilitate the conduct of much-needed oncology health services research in rehabilitation settings. Guidelines for selecting patient-reported outcome measures in cancer clinical trials have been recently proposed, and can be translated to guide the selection of PROs in cancer rehabilitation.
Franklin et al emphasize the importance of rehabilitation protocols to reduce and prevent functional impairment during and following cancer treatment. If such protocols are to be evidence-based, however, there is an urgent need to develop and disseminate research-tested interventions to improve functional performance and capacity. Although a limited range of rehabilitative interventions has been evaluated in patients with breast cancer and head and neck cancer, research focused on testing rehabilitative interventions in groups who have been understudied (eg, patients with multiple myeloma, brain tumors, and those with advanced disease) would fill a significant gap in our knowledge base. Technologies including the web, social networking sites, and portable computing devices have become increasingly important tools that clinicians deploy to implement research-tested interventions, support shared decision-making, improve continuity of care, and empower patient self-management.[16–18] The potential to exploit these technologies to improve access to cancer rehabilitation services deserves greater study.
To optimize the delivery of rehabilitation services in accord with the recommendations of Franklin and colleagues, it is essential that we address fundamental gaps in health policy, service delivery infrastructure, and workforce planning. Our clinical programs must be organized and staffed to address the expanding need for rehabilitation heralded by the increasing incidence of cancer, the transformation of cancer from a terminal disease to a complex chronic illness, the aging of the population, and the accompanying prevalence of comorbid conditions. The fact that specialists in oncology and in the rehabilitative sciences have few formalized opportunities for joint education and scientific development has served to segregate these two domains of scientific expertise. Few oncology professionals are dual-certified in oncology and rehabilitation, and there exists no core curriculum or competencies for cancer rehabilitation. The field of cancer rehabilitation would benefit from expanded opportunities to exchange information about contemporary developments in their respective specialties, and to form partnerships in testing interventions, developing patient-centered rehabilitation models, proposing evidence-based guidelines, and advancing health policy to improve rehabilitation outcomes during and following cancer and its treatment.
The development of national standards for cancer rehabilitation could serve to accelerate these needed improvements in health professional education, service delivery, research, and health policy, and such standards have been proposed recently in Great Britain. By emphasizing the importance of cancer rehabilitation in improving quality of life, the article by Franklin et al provides a timely call to action. Health professionals in oncology and rehabilitation science, and the organizations that represent us, must take the next logical step and articulate interdisciplinary, cross-specialty standards for cancer rehabilitation.