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RESEARCH REPORT

Effect of Disrupted Rehabilitation Services on Distress and Quality of Life in Breast Cancer Survivors During the COVID-19 Pandemic

Helm, Erin E. PT, DPT, PhD1; Kempski, Katelyn A. OTR/L2; Galantino, Mary Lou A. PT, PhD, MS, MSCE, FAPTA3,4,5,6

Author Information
doi: 10.1097/01.REO.0000000000000233

Abstract

Current research supports a wide array of targeted and effective therapeutic interventions that directly improve function during and after cancer treatment.1,2 Joining with the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines, the American Cancer Society, and the Association of Community Cancer Centers Cancer Program guidelines, the Commission on Cancer has adopted rehabilitation as a critical component of care. However, cancer survivors' follow-up care as a result of the COVID-19 pandemic has been severely affected because of increasing concerns regarding risk of infection associated with hospital or clinic attendance, as well as reduced workforce and workflow constraints.3

Based on available data, COVID-19 appears to affect people of all ages; however, those who are older and have preexisting medical conditions, including cancer, may be at a higher risk for serious medical complications.4 Effect of COVID-19 on cancer survivors regarding their physical well-being and the psychosocial sequelae of the pandemic may also disproportionately affect this population. Cancer survivors have unique emotional needs related to anxiety, depression, fear of recurrence, as well as family, return-to-work, and financial strain.5,6 The NCCN has recognized distress as an important consequence of cancer diagnosis and treatment. Distress can negatively impact quality of life (QOL) as well as all-cause and cancer-related morbidity and mortality.7 The ramifications of COVID-19 quarantine on distress are currently unknown.

Breast cancer survivors require specific manual assessment and interventions to address side effects of cancer treatment. The Academy of Oncologic Physical Therapy of APTA developed an evidence-based clinical practice guideline to aid clinicians in diagnosing secondary upper-quadrant cancer-related lymphedema.8 Recommendations were based on the characteristics regarding the location and stage of a patientʼs upper-quadrant lymphedema. Treatment strategies may include various manual therapy approaches for lymphedema, axillary webbing syndrome, and range-of-motion (ROM) restrictions that may impact ability to achieve optimal radiation position. Evidence citing the beneficial effects of rehabilitation for breast cancer survivors is well documented.9

Women with, or at risk for, breast cancer–related lymphedema, require active surveillance,1 and early identification and treatment of lymphedema may prevent progression to advanced clinical stages.10 Symptoms reported by breast cancer survivors are frequently associated with functional limitations in upper extremity tasks and warrant intervention. Research incorporating the prospective surveillance model of care improves symptoms, ROM, and functional upper extremity limitations 1 year after breast cancer surgery.11 Assessment and treatment involving manual lymphatic drainage and compression bandaging are mainstays of treatment.

Reduced access to services during mandated COVID-19–related closure may significantly impact ability to prevent and/or manage lymphedema, with significant effect on functional outcomes and emotional and psychosocial well-being.11 Thus, we sought to assess the effect of discontinued rehabilitation services, secondary to mandated closure related to COVID-19, on distress and QOL for women receiving rehabilitation services for breast cancer–related impairments and limitations.

METHODS

Preexisting patients in a follow-up appointment to resume rehabilitation services were asked to complete a survey regarding distress, function, and QOL (see Supplemental Digital Content Appendix A, available at: http://links.lww.com/REHABONC/A25). The survey asked patients to provide a self-report rating of current distress, as well as recall and report distress at the time of closure. Ongoing enrollment and participation took place over 3 weeks. This study was approved by Christiana Care Health System and Stockton University's Institutional Review Board (IRB). Demographic and quantitative survey data were compiled and scored for descriptive statistics, analyzed by SPSS v25.12

Measures

Distress Thermometer. The distress thermometer (DT) is widely used across cancer care settings. This one-item, 11-point Likert scale is represented on a visual graphic of a thermometer that ranges from 0 (“no distress”) to 10 (“extreme distress”).13 The scale is a valid measure of distress, with a cutoff score of 4 indicating a need for further clinical assessment.14 Reliability and temporal stability have been previously assessed in caregivers as well as patients.15 The DT has been previously used to examine change in distress over time among a heterogeneous sample of cancer survivors16; however, to our knowledge, the sensitivity to change has been explored in few studies.17

FACT-G. The Functional Assessment of Cancer Therapy–General (FACT-G) was selected as the measure of self-report QOL. The FACT-G was developed to measure QOL in patients with cancer receiving therapy and has good psychometric properties.18 It includes 4 domains: physical, social/family, emotional, and functional QOL. The FACT-G can be used to objectively quantify issues in areas that are not routinely screened for consistently when advancing through cancer treatments. This early identification of QOL issues of the FACT-G that are not consistently addressed in routine care has the potential to positively impact patient satisfaction and survival rates and reduce hospitalizations and recurrence, resulting in cost-effective care.19

Participants

All returning patients treated in the cancer rehabilitation program at an accredited cancer center in the northeast were recruited to participate. Each woman reviewed and provided institutional approved IRB informed consent. Surveys were administered upon return to the clinic during the week of May 18, 2020, to adhere to phase I opening restrictions. Participants were asked to complete the DT, the FACT-G survey, and visual analog scale questions regarding sleep, fatigue, and physical activity (see Supplemental Digital Content Appendix A, available at: http://links.lww.com/REHABONC/A25), as part of their reevaluation by the clinician. All rights of the participants were protected during this study.

Data Analysis

All statistical analyses were performed using SPSS v25.12 Paired t tests were used to explore differences in report of current distress and distress at the time of closure. Correlations between distress and measures of QOL were assessed using Pearson correlations. Post hoc analyses were performed to assess the relationship of demographics and distress levels.

RESULTS

Fifteen woman were enrolled between 38 and 76 years of age (average age = 55.33 years, SD = 9.8), with diagnostic cancer staging ranging from 0 to 4, and included 4 African Americans, 10 Caucasians, and 1 other (Table). Seventy-three percent of participants in this cohort had received mastectomies and presented initially with complaints of shoulder stiffness, pain, and lymphedema.

TABLE - Participant Demographics and Characteristics
Demographics/Clinical Characteristics
Age, mean (SD), y 53.3 (9.8)
Sex (male/female) 15 (100% female)
Ethnicity
African American 4 (26%)
Caucasian 10 (66%)
Other 1 (6%)
Cancer stage
Stage 0 1 (6%)
Stage 1 3 (20%)
Stage 2 0 (0%)
Stage 3 6 (40%)
Stage 4 3 (20%)
Unknown 1 (6%)
Diagnosis of lymphedema 11 (73%)
Telehealth used 5 (33%)

Reported distress levels at the time of closure were significantly higher than self-reported levels at reopening (t14 = 4.69, P = .000). Higher levels of distress present at the time of closure were correlated with reduced physical activity (r = −0.602, P = .018). Reduced levels of distress following return to rehabilitation were correlated with reduced levels of fatigue (r = 0.575, P = .025). A positive relationship was also present between fatigue and distress level at the initial closure; however, this was nonsignificant (r = 0.486, P = .067). No statistically significant relationships between distress and sleep quality were found. Post hoc analysis demonstrated a small, nonsignificant, positive relationship between increased levels of distress at the time of closure and increasing age (r = 0.456, P = .088) as well as reduced levels of distress at the time of reopening with increased age (r = −0.509, P = .053).

Within the current study, 33% of women received telehealth. The small sample size precludes statistical analyses; however, some mean differences are noted between fatigue and physical activity for those who received telehealth and those who did not. Individuals who received telehealth services demonstrated reduced fatigue at reopening (4.40, SD = 2.51, vs 6.40, SD = 2.11, respectively) and improved physical activity levels (8.40, SD = 2.07 vs 6.70, SD = 2.16, respectively). Distress mean levels (2.60, SD = 2.30 vs 3.00, SD = 2.44) did not differ between groups.

DISCUSSION

The COVID-19 pandemic presents unique challenges to cancer survivors, including reduced access to medical and support services. Breast cancer survivors requiring manual rehabilitation techniques to prevent, maintain, or improve upon cancer-related side effects may be particularly vulnerable to reduced or eliminated services during the COVID-19 pandemic, adding undue distress. The current study demonstrates increased self-reported distress among women experiencing a forced closure in rehabilitation services for treatment-related side effects. The psychosocial effect of closure was evident in reduced physical activity and reduced measures of QOL, as assessed by the FACT-G.

The decline in distress coincident with the patientsʼ physical return to the outpatient clinic may reflect the patientsʼ reconnection with their primary physical therapist. Unfortunately, our data set is too small to determine whether such connections maintained through telemedicine was able to reduce distress relative to those who had no interaction with therapists between clinic closure and clinic reopening. Public emotional effect and psychological response have drawn increasing attention of researchers during the COVID‐19 pandemic. However, most studies have focused on the mental health situations of the general population or medical staff.20,21 The unique implications of COVID-19 on cancer survivorsʼ physical well-being and the psychosocial effect of the pandemic may also disproportionately affect this population.

Cancer survivors have unique emotional needs related to stress, anxiety, depression, and fear of recurrences.22 Complicating matters include family and return-to-work considerations.23 Previous research demonstrates an adverse relationship between unmanaged distress, QOL, and survival among breast cancer survivors.7 Only one study reported to date has explored the relationship between fear of disease progression and psychological stress in patients with cancer during the COVID-19 pandemic.20 Their findings suggest that a significant positive relationship exists between treatment interruption and psychological stress. Possibly, this relationship was not recognized by physicians early in the COVID-19 pandemic, resulting in a failure to address this issue. The current study demonstrates the psychological effect of rehabilitation closure on distress levels. This highlights a need for identification of institutional practices that may facilitate continued treatment of cancer survivors during a pandemic.

Within the current study, 73% of the individuals surveyed had a rehabilitation diagnosis of lymphedema for which they received manual assessment and treatment. The gold standard of lymphedema management is complete decongestive therapy (CDT) performed by a certified lymphedema therapist. CDT involves manual lymphatic drainage, compression therapy including bandaging and compression garments, targeted physical activity, and significant patient education to enhance self-management and reduce risk of infection. Left unmanaged, lymphedema can result in a chronic inflammatory state within the tissue, increasing the risk of tissue fibrosis, infection, and impaired wound healing.24 Lymphedema has been shown to increase distress, alter social roles and physical function, and greatly reduce QOL.25 It is possible the distress levels at notification of rehabilitation closure seen within the current study were driven by concerns about the negative effects of the impending interruption of lymphedema management services. With greater than 20% of cancer survivors citing lymphedema as a physical concern,26 the sequelae of reduced access may be far reaching.

Telehealth interventions have shown promise in supporting cancer survivors to increase their physical activity27,28 and may provide survivors a mechanism for empowerment and strategies for coping in unprecedented times. Telehealth in one study was found to be superior to usual care in patients with breast cancer for improved QOL, higher self-efficacy, and less depression, distress, and perceived stress.29 While only 5 participants received telehealth services in this study, the key components of manual therapy were absent, requiring development of creative strategies for self-management. The current data, although limited, support a role for telehealth in promotion of physical activity and reduced fatigue levels in patients with breast cancer. The utilization of telehealth for health promotion may provide a variety of patient populations a way to maintain or establish healthy habits, achieve American College of Sports Medicine recommendations30 for physical activities, and reduce comorbidities associated with a healthy lifestyle.

There are limited studies on the use of telehealth for cancer survivors in a COVID-19 context.31–33 Incorporating psychologically informed physical therapy34 through telehealth35 is an opportunity to additionally support cancer survivors focus on healthy nutrition and physical activity behaviors to manage fatigue, sleep, and stress related to the pandemic. Further study is needed to assess the effect of telehealth utilization on rehabilitation outcomes as we advance through the pandemic.

Rehabilitation services have been shown to improve physical, psychosocial, and emotional constructs of cancer survivorship. The rehabilitation service team, including physical, occupational, and speech therapists, spend considerable time with the survivor, offering a unique opportunity to assess for distress during the COVID-19 pandemic. Assessing self-efficacy to provide empowerment through rehabilitative services in person or through telehealth may allow for reduced distress and appropriate identification and referrals. It will be important that the cancer survivorship community continue to assess the effect of future closures across cancer rehabilitation centers.

Weighing the benefits versus risk of in-clinic treatment requires significant consideration by the patient, clinician, and health system. Increased distress is one potential negative effect arising from reducing or eliminating rehabilitation services, effects known to cause their own adverse health effects as suggested by this study. The short- and long-term physical and psychosocial effects of reduced services on the cancer survivor will likely be elucidated further over time. Coalescing evidence, resources, and best practices in rehabilitation delivery will be of benefit for this population, given the unpredictability of this future pandemic. Ultimately, key stakeholders will need to optimize decision making for cancer survivors accessing rehabilitation as COVID-19 eventually resolves.

Limitations

This is a small pilot survey study that elucidates the effect of distress, function, and QOL during COVID-19 disruption in services. The current study used patient self-report of distress levels upon return to therapy and asked patients to recall their level of distress at notification of closure. The ability to accurately recall levels of distress at a previous time may limit accuracy and introduce systematic error into the study through recall bias. We did not use the problem list on the DT to the full extent of interpretation yet included simple visual analog scale questions regarding sleep quality, fatigue, and physical activity for the purpose of this study. The NCCN advises the use of the Problem List for patients as part of the assessment to assist the clinician in identifying sources of patient distress.36 The current study demonstrates an increased level of distress at rehabilitation closure that is reduced for patients upon return to services. The distress levels seen, however, are likely multifactorial and cannot be directly linked to rehabilitation closure. Further assessment is required in order to dissect the roles of various stressors on distress levels at the time of closure; however, this was not within the scope of the current article.

While telehealth service was not a primary focus within the current study, the effect of telehealth on self-report of distress, fatigue, physical activity, and QOL cannot be overlooked. Within the current study, 33% of participants received telehealth. The small sample size precludes statistical power; however, differences are noted between fatigue and physical activity for those who received telehealth and those who did not. While the effect of telehealth may be discounted in the current study, future research is warranted to examine the role of telehealth on rehabilitation outcomes.

The APTA Evaluation Database to Guide Effectiveness (EDGE) Task Force was formed with a goal to provide physical therapy professionals with a comprehensive list of outcome measures that can be administered to a specific patient population. The psychometric properties and clinical utility within a particular patient population were detailed for physical therapy professionals to have access to this valuable information for implementing evidence-based practice.37 The FACT-G as recommend by the APTA Academy of Oncologic Physical Therapy EDGE Task Force provided confirmation of similar outcomes with the DT. The FACT-B would provide greater specificity for breast cancer survivors; however, we chose the FACT-G across for all types of cancer in this clinical setting. This pilot study is a subset of the data collected by the clinic to establish a homogeneous group for comparison.

CONCLUSION

Distress is considered the sixth vital sign in oncology care. During COVID-19 quarantine, distress was significantly elevated when rehabilitation facilities closed.

Results from this pilot study demonstrate that (1) the interruption of cancer rehabilitation services increases the sense of distress perceived by those who face the loss of such services and (2) the increased distress worsens fatigue, physical activity levels, and QOL, changes, which further add to the health burden experienced by cancer survivors. Prevalence of distress during a cancer diagnosis and reduced physical activity and decreased QOL in breast cancer survivors is compounded when uncertainty prevails. Further research is needed to validate optimal interventions to navigate survivor needs, especially in a COVID-19 context.

ACKNOWLEDGMENTS

The authors offer special thanks to the dedicated staff of Specialty Rehabilitation Inc providing services for Helen F. Graham Cancer Center. The authors are grateful for statistical support from Dr Tara Crowell, and patients as they traverse the uncertainty of the COVID-19 pandemic.

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Keywords:

distress; fatigue; physical activity; quality of life

© 2020 Academy of Oncologic Physical Therapy, APTA.