Background

The population of people with a history of cancer is expanding at an increasing rate as treatment improves and the population ages.¹ As a result of the disease and treatment, patients are at risk for reduced physical and cognitive function, disablement, and numerous impairments, including pain, lymphedema, and peripheral neuropathy. This can reduce health-related quality of life (HRQoL) and reintegration into society.^2,3 The majority of cancer survivors report a need for at least one rehabilitation service⁴ and may develop chronic impairments following treatment, with an increased incidence in patients with active and advanced cancer.⁵ This prevalence is increased in specific cancer diagnoses, including breast⁶ and head and neck cancers.⁷ These functional impairments not only often occur during active treatment but also have the potential for both long-term chronic impairments and progressive decline with late effects.⁵ High prevalence of functional impairments has been documented in prior studies, with 87% of breast cancer survivors reporting an upper extremity symptom and >90% of head and neck cancer survivors developing lymphedema and 70% experiencing shoulder pain.^5,7,8

The WHO has included a definition of rehabilitation as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment.”⁹ Rehabilitation interventions improve function,¹⁰ modulate pain,¹¹ and reduce symptom burden from other impairments.^12,13 Furthermore, a decline in function and ability to perform activities of daily living is associated with greater mortality, suggesting a role for rehabilitation in cancer care beyond functional restoration.^14,15 Unfortunately, rehabilitation services are underutilized in patients with cancer.^16,17 Despite guidelines from oncology organizations recommending referral to rehabilitation services for evaluation and management of declining functional status and relevant symptoms, many factors contribute to the apparent underutilization of rehabilitation. These factors may include lack of knowledge about cancer rehabilitation, uncertainty about the scope of possible services, lack of access to rehabilitation services, failures to identify and document functional impairments, lack of bandwidth on the part of oncologists and primary care physicians to address impairments, concerns about giving false hope to patients with advanced disease patients’ misperceptions regarding the role of rehabilitation, and hesitance from patients to participate in rehabilitation.^18–23 Making guideline-level recommendations clearer, such as specifying to which rehabilitation provider patients should be referred, may demystify some of the process and improve throughput to these valuable services.

Recently, Stout et al²⁴ systematically reviewed oncology guideline recommendations for rehabilitation, finding that rehabilitation was recommended in the management of functional impairments in many cancers. Their review provides an important and exhaustive summary of when rehabilitation is recommended in cancer care, and the authors concluded that there is a discordance between guideline recommendations and rehabilitation utilization. What remains to be discovered, however, is when guidelines mention this treatment in specific patient populations with deficits potentially modifiable with rehabilitation; for example, if rehabilitation is mentioned in a breast cancer guideline or in a guideline regarding peripheral neuropathy. Additionally, this systematic review by Stout et al²⁴ broadly defined rehabilitation as including disciplines such as nutrition and music therapy, which may fall under a different service’s purview and/or not be available at many institutions. As such, a closer look specifically at where rehabilitation disciplines that are near-universal to cancer centers are mentioned, such as physical medicine and rehabilitation (PM&R), physical therapy (PT), occupational therapy (OT), speech-language pathology (SLP), and rehabilitation psychology, would be useful to identify guideline blind spots. Each rehabilitation discipline offers unique services and skill sets. Therefore, providing targeted referrals to the most appropriate discipline is essential for optimizing care. Figure 1 provides a review of rehabilitation disciplines.

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Description of the unique roles of rehabilitation disciplines.

Abbreviation: PM&R, physical medicine and rehabilitation.

Citation: Journal of the National Comprehensive Cancer Network 22, 8; 10.6004/jnccn.2024.7033

This article reports on our iterative process for reviewing key cancer treatment guidelines that include common specific impairments frequently treated with rehabilitation interventions. Specifically, we review existing guideline recommendations with regard to whether rehabilitation is recommended, and if so, what service (eg, PT, OT), and what guidelines do not recommend rehabilitation despite there being a potential benefit to patients.

Methods

Guidelines were selected from the American Cancer Society (ACS), ASCO, and NCCN (Table 1). These organizations were selected due to their international prominence and the fact that they develop and publish guidelines that cut across cancer types and symptoms, giving them a broader audience than a specialty organization’s guidelines. We felt that evaluating guidelines with the largest reader base would provide the most useful information regarding the inclusion of rehabilitation in guideline-level recommendations. Guidelines from organizations like the American Society of Radiation Oncology (ASTRO) and other, smaller, disease-specific organizations were excluded because they often support guidelines from ASCO, ACS, or NCCN, or emphasize specific antitumor treatment and not multidisciplinary interventions (eg, radiation therapy recommendations from ASTRO). Symptom-specific guidelines included in the analysis addressed symptoms routinely managed by cancer rehabilitation providers, including fatigue, pain, peripheral neuropathy, cognitive dysfunction, and lymphedema. These were chosen because they are prevalent impairments across multiple diseases, are experienced by cancer survivors, and are symptoms for which comprehensive cancer rehabilitation can provide benefit in patient function and quality of life.²⁵ In addition, guidelines were also included for cancer type–specific populations representing patients with the most common malignancies seen in cancer rehabilitation clinics and who are therefore more likely to experience functional impairments.²⁶ These inclusion criteria were developed through expert consensus among 7 cancer rehabilitation physiatrists from multiple institutions.

Table 1.

List of Guidelines Reviewed in the Gap Analysis

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For this study, 2 of the authors were randomly assigned to independently review each published guideline. A separate, third reviewer compared their independent reviews and highlighted any discrepancies. When a clear resolution to the discrepancy was available, this was updated by the third reviewer. If unable to be resolved between the 3 reviewers, the discrepancy was discussed with the entire group for consensus toward resolution. Because NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) are regularly updated, the guidelines included for the purpose of this analysis are updated to the latest version as of December 2021.

The clinical practice guidelines for cancer type–specific groups were evaluated to identify whether the selected 5 symptoms commonly addressed in cancer rehabilitation (fatigue, pain, peripheral neuropathy, cognitive dysfunction, and lymphedema) were mentioned and what disciplines of rehabilitation were recommended to address these symptoms. Additionally, some guidelines, such as NCCN Guidelines, provide recommendations for rehabilitation for more general problems, such as weakness and reduced range of motion; these recommendations were also captured. For the analysis of prevalence, rates of inclusion of rehabilitation disciplines were based on the symptoms being included in the guideline, and whether those symptoms were modifiable by rehabilitation. For example, whether lymphedema was mentioned in breast cancer guidelines, and if so, what rehabilitation disciplines were recommended to manage it. Symptom-specific guidelines were reviewed to see which, if any, rehabilitation disciplines were recommended for management. For both types of guidelines, a binary variable of yes or no was used to evaluate recommendations for mention of rehabilitation (in general) or for each of PM&R, PT, OT, SLP, and rehabilitation psychology/neuropsychology specifically. Additionally, it was recorded whether other, nonrehabilitation providers were recommended to address these symptoms, such as pain medicine for the management of peripheral neuropathy. Finally, the presence of a rehabilitation clinician in writing the guidelines was recorded. Of note, for this analysis, “physical activity” was not considered rehabilitation because it is neither skilled nor supervised by rehabilitation providers. When certified lymphedema therapy was recommended, it was not considered PT or OT unless specified, but was considered general rehabilitation.

Results

Cancer Type–Specific Guidelines

In cancer type–specific guidelines, the prevalence of recommendation for rehabilitation was at 29% overall, but lower for specific rehabilitation disciplines compared with symptom-specific guidelines. PM&R was recommended in 11%, PT in 9%, OT in 7%, rehabilitation psychology/neuropsychology in 5%, and SLP in 0% (Table 2).

Table 2.

Prevalence of Rehabilitation Disciplines Included in Analyzed Guidelines

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Individual Symptoms

For cognitive dysfunction, neuropsychology was most recommended at 44%, followed by rehabilitation (in general) at 22% and OT and SLP in 11% each. For the other 4 symptoms, rehabilitation (in general) was the most common recommendation, ranging from 23% to 56%. Additional details on the prevalence of rehabilitation discipline recommendations are included in Table 2 and Figure 2.

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Frequency of rehabilitation discipline recommendations.

Abbreviation: PM&R, physical medicine and rehabilitation.

Citation: Journal of the National Comprehensive Cancer Network 22, 8; 10.6004/jnccn.2024.7033

Discussion

Oncology guidelines are key drivers to influence practice and ensure patients receive appropriate medical care. However, this analysis highlights the relative paucity of recommendations for specialized rehabilitation professionals to be involved in specific diseases and symptoms in which strong evidence supports rehabilitation as an effective intervention. These results provide additional and useful detail to the publication by Stout et al,²⁴ which systematically characterized rehabilitation’s presence in different guidelines. Previous studies have shown a large need for rehabilitation services during and after cancer treatment¹ and a relatively low utilization of these services.² Improving the quality and, when appropriate, quantity of rehabilitation recommendations in oncology care guidelines may increase the appropriate involvement of rehabilitation in cancer care.

To that point, in cancer type–specific guidelines, individual rehabilitation services were not commonly recommended. Instead, the more general term “rehabilitation” was the most frequently suggested (29%). Comparatively, specific rehabilitation services, such as PM&R, PT, OT, SLP, and rehabilitation psychology/neuropsychology were less frequently recommended in these types of guidelines. A general recommendation for “rehabilitation” lacks critical guidance for oncology providers and may stymie referrals. Improving precision of recommendations may make it easier for providers to know to whom they should refer a patient for a given condition.

For symptom-specific guidelines (eg, lymphedema), more specific rehabilitation recommendations were made. Rehabilitation was recommended in 60% of these guidelines and PT and OT were the disciplines with the highest chance of being recommended at 70%. The reason for the discrepancy between cancer type–specific and symptom-specific guidelines is unclear. One possibility is that symptom-specific guidelines are likely to be more focused on interventions to improve patients’ HRQoL, whereas cancer type–specific guidelines may be more focused on cancer treatment.

Of the specific rehabilitation disciplines recommended in guidelines, PM&R and PT were the most frequently suggested. Although this is encouraging for the future utilization of these services, it also brings to light that other critical rehabilitation services may be underrecognized and hence underutilized. Oncology teams may not know which rehabilitation discipline is most appropriate for a given symptom or impairment and guidelines are useful tools to help providers navigate referrals. Each rehabilitation discipline offers a specialized skill set, and targeted referrals facilitate connecting patients with the specific care they need within the expanse of rehabilitation services. The roles of rehabilitation team members have been described in the physiatric literature.²⁷

Rehabilitation specialists must also work to improve patient access and the presence of rehabilitation in guidelines. It is critical for rehabilitation researchers to strengthen the evidence basis for oncologic rehabilitation interventions, because there is a paucity of randomized controlled trials supporting these interventions. Stronger evidence will drive greater utilization of these services. Importantly, organizations should consider inviting more rehabilitation specialists to participate in guideline writing teams.

Because symptom-specific guidelines generated greater recommendations for rehabilitation services compared with cancer type–specific guidelines, creating new and updated symptom focused guidelines may further bring to light the role of rehabilitation services in cancer care. In addition, given the disparity in rehabilitation recommendations between cancer type–specific and symptom-specific guidelines, it is critical for workgroups to cross-reference these 2 types of guidelines to ensure that their recommendations are congruent.

This research has several limitations. First, we only looked at a particular sample of guidelines and omitted specialty-specific and other published guidelines. Although it is possible that other guidelines would provide additional valuable detail, it was thought that given the granular nature of this analysis, a broader scope of guideline review would dilute the results and make them more difficult to interpret. Although we feel that the numbers should be higher given the benefit of rehabilitation in managing these impairments and patients with a history of these malignancies, there are certainly patients who do not need rehabilitative services. As rehabilitation professionals, we are biased toward more rehabilitation, and other specialists may disagree with these findings.

Conclusions

Most oncology guidelines do not include specific recommendations for rehabilitation services. Symptom-specific guidelines recommend rehabilitation services more frequently than cancer type–specific guidelines. With a stronger evidence base, increased involvement of rehabilitation specialists in guideline development, and increased awareness among oncology providers, rehabilitation recommendations in oncologic guidelines may be more precise. This may lead to improved utilization of rehabilitation services so that patients with cancer can receive the support they need to enhance their function and quality of life.