Objective: To describe physical and functional impairments after cancer, and whether physical therapy was utilized to address impairments among cancer survivors from the Boston Puerto Rican Health Study.
Methods: Puerto Rican cancer survivors were surveyed about impairments—joint range-of-motion impairment, muscle weakness, pain, fatigue, skin numbness, abnormal posture, and signs and symptoms of lymphedema (localized edema, skin texture or color changes, or self-reported diagnosis of lymphedema)—and referral to physical therapy for impairments. Percentages of cancer survivors with impairments and physical therapy utilization were compared by income, adjusting for cancer treatment, comorbidity, and years since diagnosis.
Results: Among 70 cancer survivors interviewed, 100% had health insurance (Massachusetts state law requirement). Mean age was 67 years, 81% were female, 38% had an income <$10,000, and a mean of 6.8 comorbid conditions (>50% report arthritis and hypertension) were noted. The most common cancers reported (in descending order) were breast, prostate, female reproductive, colorectal, and cancer of the head and neck; 21% were “other” types. None reported lung cancer. Eighty-five percent reported having at least 1 impairment, with an average of 2.9 impairments; 53% reported 3 or more impairments. In addition, 50% had ≥1 signs and symptoms of lymphedema, whereas 35% reported cancer-related swelling. Of those with swelling, 50% received treatment for it. Less than 20% received physical therapy for any impairment.
Conclusions: This sample of Puerto Rican cancer survivors was largely female and nearly all had low income. They reported a high level of comorbid conditions and impairments. Despite state-required health insurance, few received physical therapy, suggesting underutilization of physical therapy for this patient group.
More Americans are living with cancer-related or treatment-related impairments than at any time in US history.1 The population of cancer survivors is estimated at 14.5 million and is projected to approach 18 million by 2022.2,3 Pain, fatigue, and lymphedema are well-known impairments, but lymphedema research is largely performed on samples of breast cancer survivors rather than heterogeneous samples of survivors of other tumor types.4 Poorly controlled pain can lead to sustained contraction of nearby muscles, tissue degradation, psychological distress, disability, and poor quality of life.5,6 Moreover, pain may also contribute to patterns of movement overuse, poor posture, and faulty biomechanics.7-9
More than 90% of cancer survivors report fatigue interfering with health-related quality of life, mood, and activities of daily living.10-14 Lymphedema can occur wherever the lymph system is damaged (eg, by surgical resection, chemotherapy, or radiation). Less obvious impairments, such as muscle weakness, skin numbness, joint range-of-motion impairment, and abnormal posture, may be disabling.1 All of these impairments are frequently observed among cancer survivors and fall within the scope of practice of rehabilitation clinical specialists, including, but not limited to, physical therapy.8,15-21
Most studies describing side effects or impairments have focused on breast cancer survivors who are non-Hispanic, white, middle income, and have health insurance.22 Minorities, the poor, and the medically underserved bear the greatest burden of cancer, especially in terms of mortality, access to healthcare, and the ability to withstand cancer treatment costs.21-28 Among Hispanics, Puerto Ricans have the second highest cancer mortality rate (Cubans have the highest rate).29,30 Hispanic cancer survivors also report significantly worse distress, depression, social support, and health-related quality of life than non-Hispanics.31
Socioeconomic status (SES), unequal access to treatment, race, and ethnicity are cited as contributing to disparities in the prevalence of cancer and its related mortality27-30,32-39 with SES, rather than race or ethnicity, as the strongest predictor of cancer death.29 Despite these mechanisms, little is known about whether impairments and their treatment are also differently experienced for low-income Hispanics.35,40-43 This is one of the first studies to examine the prevalence of impairments for cancer survivors of Puerto Rican descent, and whether physical therapy has been utilized to address these impairments.
We included cancer survivors originally enrolled in the Boston Puerto Rican Health Study (BPRHS). This long-term, prospective, population-based cohort study had recruited Puerto Rican adults (aged 45-75 years) residing in the greater Boston metropolitan area. As with the BPRHS, a requirement of inclusion in our study was that participants be able to speak and understand Spanish or English. This subset of self-reported cancer survivors from the BPRHS (n = 104) was eligible to participate in our study. BPRHS recruitment and survey methods are described online at www.uml.edu/Research/CPHHD/About/default.aspx and elsewhere.44
After receiving institutional review board approval (Northeastern University), we obtained contact information for the BPRHS cancer survivors who were still alive by December 2012. Next, we attempted to reconnect with these survivors by sending them an introductory recruitment packet that included a letter of introduction, a copy of the consent form, and a self-addressed stamped envelope. After the introductory packet was mailed, research staff members followed up by telephone to determine willingness to participate in the study. Up to 15 such attempts were made for each prospective participant, with 2 tries being the most common. Once we established a survivor’s willingness to participate, we scheduled an in-home, face-to-face interview to be conducted in Spanish or English. All of our interviewers were bilingual—fluent in both Spanish and English—and were trained on informed consent and study procedures. Informed consent was obtained at the home visit and took approximately 60 minutes.
The survey and written materials had a readability level of no higher than the 8th grade and were designed to be culturally sensitive and relevant, as per methods described previously by other investigators.44-47 The survey included items on social demographics, medical history, impairments, and utilization of physical therapy to address the reported impairments. Diagrams of the human body were used to indicate regions affected by the cancer and its treatment, as well as the specific locations of impairments.
SES was measured as level of formal education achieved (<9 years, 9-11 years, high school/GED, vocational/technical, some college/junior college, college graduate or higher) and annual household income (<$10,000, $10,000 to <$20,000, $20,000 to <$30,000, $30,000 to <$50,000, and ≥$50,000).
We approximated the 2011 US Census Bureau official poverty threshold to represent “low income” ($22,811 for a family of 4)48,49—our categories of <$10,000 and $10,000 to $20,000.48,49
The number of years since cancer diagnosis was calculated by taking the year of diagnosis and subtracting it from the interview date. Health insurance status was classified by carrier—MassHealth, Medicare, private insurance (eg, Partners HealthCare/Neighborhood Health Plan, Harvard Pilgrim HealthCare, Tufts Health Plan), other type of insurance (not specified), and no insurance reported—at the time of the initial BPRHS interview. We verified that this information was still correct for each participant in the present study of cancer survivors.
Medical History/Comorbid Conditions
Body mass index was calculated as self-reported current weight divided by height squared, from the 2-year BPRHS follow-up interview. Participants were asked to respond by yes or no to a history of high blood pressure; myocardial infarction; heart disease (other than heart attack); diabetes; cerebrovascular accident; respiratory disease (emphysema, chronic bronchitis, asthma); depression; osteoarthritis; osteoporosis; liver or gallbladder disease; kidney disease; intestinal/ulcer disorder; congestive heart failure; Parkinson’s disease; eye disease (cataract or glaucoma); anxiety; depression; seizure disorder; tuberculosis; hepatitis; HIV/AIDS; memory problems; and paralysis. The sum of these conditions represents the total number of comorbid conditions.50
Physical and Functional Impairments
Participants were asked to respond yes or no as to whether they had any of the following impairments in the affected area(s): difficulty moving, muscle weakness, pain, fatigue, skin numbness, and abnormal posture. The sum of an individual’s positive responses comprised the total number of impairments for that participant.
For the cardinal signs of lymphedema, participants were asked to respond yes or no regarding the presence or absence of the following factors in the affected area, in terms of whether (1) swelling stayed the same or came and went; (2) hardening of the skin was exhibited (texture change indicative of tissue fibrosis); (3) darkening of the skin occurred; or (4) feelings of fullness or heaviness were experienced.51-53
Physical Therapy and Potential Barriers to Its Utilization
From the literature, we compiled a list of possible barriers to seeking healthcare services. We asked participants whether they utilized physical therapy for the impairments noted.
Participants were asked if any of the following served as barriers to physical therapy care: cost of care; lack of insurance for >6 months; doctor did not recommend physical therapy; fear that a physical therapist will not speak Spanish; forgot to go to physical therapy; insurance does not cover physical therapy; fear of finding cancer; fear of making cancer spread; too busy to attend physical therapy; fear of prejudice or racism; fear of embarrassment; physical therapy costs too much; fear of discomfort or pain; need to take time off from work to attend physical therapy; clinic has inconvenient hours; transportation problems; inability to secure care for children or adult relatives in order to attend physical therapy; attending physical therapy is not supported by the family; and did not know where to go for physical therapy care.
Participants were stratified by annual household income (<$10,000, ≥$10,000). We describe participant characteristics with frequencies and percentages for categorical variables and means and standard deviation (SD) for continuous measures.
Differences by income strata were assessed with Mantel-Haenszel chi-square tests for ordinal variables, chi-square tests or Fisher exact test for categorical variables, and independent sample t-tests for continuous variables. The threshold for statistical significance of all analyses was determined using a 2-sided P value of .05. Analyses were performed using SAS version 9.3 (Cary, NC).
From the total of 104 men and women who reported having been diagnosed with cancer before entry into the BPRHS and not previously known to have died, we completed 70 interviews resulting in a relatively high (67%) recruitment rate (57 women, 13 men). Of the 34 nonparticipants, 20 could not be reached by telephone, mailing, or home visits; 5 reported never having had cancer; 8 refused to participate; and 1 had died, as confirmed through a search of the National Death Index database.
Cancer Treatment, Demographics, and Comorbidity
Specific demographics and participant characteristics are shown in Table 1. On average, participants in our sample had survived their cancer for 12.5 years and had a mean age of approximately 67 years. Eighty-one percent were female, 87% had annual household incomes ≤$20,000 and 39% had incomes ≤$10,000, 60% had formal education below the 9th-grade level, and 100% had health insurance (required by Massachusetts state law). There were no statistical differences between income levels.
As shown in Table 2, the average number of comorbidities was 7, and the most frequently reported conditions were arthritis (77%), hypertension (74%), and depression (63%). The most frequently reported types of cancer were breast (n = 26; 46% of women), prostate (n = 5; 46% of men), female reproductive (n = 12; 21% of women), colorectal (n = 8; 11% of total sample), and cancer of the head and neck (n = 2; 7.1% of total sample). The remainder reported having “other” (18.6%) types of cancer. Surprisingly, there were no reports of lung cancer, possibly due to low survival from this type of cancer. Nearly 90% of the participants report having had surgery to treat their cancer; 41% had radiation, whereas 30% had chemotherapy and 40% had long-term medication.
Impairments and Physical Therapy Utilization
In our sample, 85% of participants reported having at least 1 impairment. Among the 12 impairments included in our survey, the average number reported was 2.9 (SD, 2.3). More than half of our sample reported having had 3 or more impairments: 30% had 3 to 4 and 23% had >4 impairments (Table 3).
The most prevalent impairments were pain (63%), skin numbness of the hands and feet (40%), fatigue (40%), muscle weakness (34%), movement of the affected area (34%), numbness not in the hands/feet (31.4%), abnormal gait (29%), edema of affected area (23%), and balance impairment (20%). Despite these reported impairments, only 27% reported that their doctor referred them to physical therapy and 18% reported having received physical therapy to treat any impairment. Of those with muscle weakness, 18% report having utilized physical therapy. Similarly, of those with pain or movement impairment, 17%, respectively, reported having had utilized physical therapy. There were no statistical differences by income.
Lymphedema Signs and Symptoms
Of the 23 (33%) participants who reported signs and symptoms of lymphedema (Table 4), the most commonly affected areas were the upper quarter (61%, including the face/head/neck) and lower quarter (39% in the mid-trunk to lower quarter, including the abdomen, pelvis, and genitals, and the middle and lower back, and buttocks), whereas 21% (not shown in Table 4) had more than one area involved. In all, 32% reported swelling only in the area(s) treated for cancer. The most frequently reported sign or symptom of lymphedema was skin darkening (27%; indicating hemosiderin staining), skin hardening (26%; indicating fibrosis), and the affected area feeling heavy or full (20%). In addition, 28.5% reported having at least 2 signs or symptoms of lymphedema. Of those with edema, 57% had received treatment for their swelling. There were no statistical differences by income.
Barriers to Physical Therapy
Table 5 presents the most frequently reported barriers to receiving physical therapy. Nearly 30% of participants cited a lack of a recommendation from their doctor. Some other variables participants mentioned were insurance will not cover physical therapy (28%); do not know where to go for physical therapy (27%); clinic had inconvenient hours (25%); and lack of support from family and friends (22%). There was a tendency for those with very low income (<$10,000) to report these more frequently (27%-39% vs 20%-24%).
Nine percent reported fear of discomfort or pain as a barrier to seeking physical therapy. Notable barriers usually seen for accessing and receiving care for cancer were not identified by this group—only 6% expressed concern that the provider may not speak Spanish or that it would be a problem to take time off from work. Fewer than 5% noted fear of prejudice, fear of recurrence or spreading of the disease, problems with transportation, or concern about care for children or adult dependents. However, Table 5 shows how this is different for those who report having received a referral to physical therapy (n = 20). These participants report barriers of fear of pain (30%) and speaking Spanish (20%).
Lack of support from family and friends, fear of prejudice or racism, fear of spreading cancer, transportation, and cost were each reported by 15% of our participants. Forgetting to schedule physical therapy, the inability to take time off from work to attend physical therapy, and a fear of recurrence were each reported by 10%. A lack of coverage by insurance, not knowing where to go for physical therapy, feeling embarrassed, and the inability to arrange for care for children or adult relatives were each reported by 5% of our participants. Clinic hours, being too busy, and interference with spending time with family were not reported as barriers to physical therapy.
This study is the first to report on impairments and physical therapy utilization across tumor types in a Puerto Rican population. Whereas survivors of different tumor types may have unique side effects in terms of surgery, radiation, and chemotherapy, we can view physical and functional impairments as common across tumor types, with variation by frequency and severity. For example, postmastectomy pain is experienced exclusively by breast cancer survivors, but pain (including neuropathic pain) is clearly experienced by cancer survivors of all types.
Recent evidence suggests that survivors of breast, colorectal, lung, and prostate cancers who are also minorities (including Hispanics) are significantly undertreated for pain, compared with their white counterparts.54 In general, rehabilitation specialists (ie, physiatrists and physical, occupational, or speech therapists) can reduce pain and may help reduce time taken off from work or unemployment claims.1,55 We were encouraged to learn that 20% of our participants had received physical therapy for their pain. Similarly, cancer survivors for whom lymph nodes and/or lymphatic vasculature are removed (surgically) or otherwise damaged (eg, radiation tissue fibrosis involving lymphatic nodes and vasculature) are at risk for lymphedema, and it was encouraging that physical therapy was utilized at least among some of those with edema.56
Our sample is unique in 2 important ways. First, it is comprised mostly of those with low incomes. This likely contributed to the lack of significance for household income. Second, all our participants had health insurance—a requirement by Massachusetts state law.
Recent research on healthcare disparities suggests that residence in neighborhoods of low SES is associated with lower survival among patients across survivors of breast, colorectal, lung, and prostate cancers.57
A cultural value among many Hispanic cultures is living in a multigenerational family setting. Hence, future research may need to take into account family size and roles, in order to fully appreciate the effects of household income.58-63 SES is a strong predictor of health disparities alongside race and ethnicity,57,58,64-67 whereas other studies point to a lack of health insurance as a key explanatory factor for cancer disparities.68-71
Like previous literature, pain and fatigue were frequently reported impairments.10,72,73 Poorly controlled pain is a critically important issue, because it contributes not only to psychological distress but also to disability and poor quality of life.5,6,74 Physical therapy can help reduce pain, and so it was encouraging to see that one-fifth of our participants received physical therapy for pain.
Most cancer survivors are affected by fatigue, which in turn affects quality of life and increases levels of disability and healthcare utilization.10,12,75 In a longitudinal study of 252 breast cancer survivors, 31% reported fatigue by the end of cancer treatment but only 11% had fatigue 6 months posttreatment, declining to 6% by the end of the first posttreatment year.13 In contrast, 40% of our cancer survivors reported cancer-related fatigue well beyond the first year of treatment.
The majority (85%) reported having had at least 1 impairment, with 53% having reported 3 or more impairments, indicating a high persistent symptom burden across a heterogeneous cancer survivor cohort in support of previous literature.72 Nearly one-third of our participants reported signs and symptoms of lymphedema, adding to the already variable prevalences reported across all tumor types.76,77 Despite a high prevalence of impairments among our sample, less than one-third of our sample reported having been referred to physical therapy, despite physical therapy having been identified as an important method to reduce the impact of these impairments.1,56
Other impairments examined represent opportunities to include rehabilitation services in survivorship planning. As licensed professionals, physical therapists are also able to bill insurance companies for reimbursement. In a state where insurance is required and well-subsidized, barriers to physical therapy care posed by underinsurance or lack of insurance may be minimal and, perhaps, limited only by copayment, making physical therapy more affordable for those residing in Massachusetts.
The number of impairments and comorbidities suggest that our participants may be at risk for long-term cancer-related disability. It is interesting to note that in our sample, muscle weakness, pain, and impaired movement had the highest percentages of those who had been referred to physical therapy, whereas the remainder did not. It is possible that other rehabilitation specialties, such as consultations with rehabilitation physicians (physiatrists) and occupational and speech therapists, may have been recommended for some of the other impairments.
Because we only asked about referral to physical therapy and not to other therapies, a limitation of our study is that we may have underestimated rehabilitation services received by our sample participants. It is possible that healthcare providers referring patients for physical therapy need more education on impairments and the role of rehabilitation (including physical therapy) in survivorship planning. This supports recommendations by the Institute of Medicine on cancer survivorship planning and the issue of addressing impairments (such as those noted in our study), as recommended by the American Cancer Society.35,78
Impairments may be subtle, slow to evolve, and difficult for a referring provider to diagnose. For example, early stages of lymphedema may be subtle, making detection difficult even for healthcare providers having much experience with the condition, thereby possibly delaying treatment.76-80 Another possibility is that referring providers do not have adequate thresholds from which to gauge whether a recommendation for physical therapy is warranted.81 It is also possible that some cancer survivors believe that they just have to “live with” side effects or impairments and do not report them.82,83 Combined with previous research, our study suggests that an unmet need for cancer rehabilitation may exist.
Other limitations include the reliance on self-reported outcomes by cancer survivors, which raises possible issues regarding memory recall and attribution by our participants. Verification of these self-reports (eg, medical chart review) would have been ideal but is unrealistic due to the many hospitals, community health centers, and outpatient practice settings visited by participants and a limited budget. Regardless, recent documentation requirements for Medicare patients include the use of outcome measures of function, such as the patient-reported outcome measures used in this study. Clinically speaking, the self-report of the patient is often the only qualifier that the healthcare provider has in order to make a referral to physical therapy. These self-reports are critical for rehabilitation specialists to gauge the extent of interference with function and are linked to Medicare reimbursement.
It is possible that some participants may attribute noncancer-related impairments to their cancer experience. We did not collect baseline or pretreatment data to determine preexistence of impairments. It is possible that physical and functional impairments existed prior to the cancer diagnosis and that cancer treatment exacerbated these impairments. The high level of comorbidity may mean that it is difficult to differentiate whether signs or symptoms are related to cancer versus a comorbid or preexisting condition. Regardless, these impairments are present, no matter the source. Aging can also compound impairments.84,85 It may be that these impairments could be worse for those with advanced age and higher rates of comorbid conditions.86
Our study included participants with low income, and it is possible that our results could be partially explained by differences in other income-related social determinants, such as location of residence. Areas with higher versus lower healthcare spending have been shown to have higher rates of recommended and preferred healthcare as well as lower lung cancer mortality.87 However, all of our participants are long-term urban dwellers in the greater Boston area—an area of relatively high healthcare spending.88
Future research should include these comparisons by taking advantage of hierarchical statistical modeling. Whether levels of impairment and comorbidity differ between those with and without a history of cancer for those of Puerto Rican descent remains to be examined. In the current study, we examined only whether participants reported having (or not having) a particular impairment. However, we recognize that the severity (not number) of impairments or interference with function may be the more important factor in determining whether physical therapy is recommended.
This study limited its health services utilization to physical therapy for a number of reasons. The Institute of Medicine, in its publications concerning cancer survivorship, suggests that rehabilitation services in general are underutilized by cancer survivors. However, whereas they recommend the use of rehabilitation services in general, physical therapy is particularly underrepresented in the cancer survivorship literature. As such, this gap merited a focus on physical therapy. In many states, patients can self-refer to a physical therapist for evaluation. This means that a physician’s referral is not required for a physical therapy evaluation. However, if treatment were to continue, a physician referral is often required for insurance reimbursement. One model of survivorship care delivery involves the physiatrist to manage and lead the care of cancer survivors’ rehabilitation needs.1
Advanced practice oncology nurse practitioners are also in an excellent position to manage these survivorship care needs, as suggested by the Institute of Medicine.35 However, an important part of care management is knowing when to refer to specialists who are best prepared to address specialized cancer survivorship needs—such as those described here. Further, it is incumbent upon the provider to gain the training and expertise needed to manage cancer survivorship issues. For example, if the need involves impairments such as those noted in our study, inclusion of the physiatrist and related rehabilitation specialists such as physical therapists is warranted, as they are an important part of the medical team. This could take the form of a physician-led model of care, as is the case for traditional rehabilitation care, or one that is more shared among oncologists, physiatrists, advanced practice nurses, and other rehabilitation specialists (nursing, physical, occupational, and speech therapies). These rehabilitation specialists bring to bear their training, expertise, and skills to address the multitude of rehabilitation needs of cancer survivors.
Other providers included in the rehabilitation model include social workers, clinical psychologists specializing in rehabilitation, dietitians, and recreational therapists. This model has long been the standard of care in the management of other complicated patient populations. The Commission on Accreditation of Rehabilitation Facilities 2015 Medical Rehabilitation Program Descriptions describe the elements of comprehensive rehabilitation for a variety of patient populations such as stroke, traumatic brain injury, spinal cord injury, burns, amputation, and cancer rehabilitation.89 Some have proposed a “prospective surveillance” model for the management of cancer survivors.90 Although “prospective surveillance” may sound appealing to those not specializing in rehabilitation, the fact is that the rehabilitation model has been in existence for a long time. This model is already established in most hospital and healthcare systems, and the Commission on Accreditation of Rehabilitation Facilities accreditation means that the facility has met rigorous and comprehensive national standards for specialized rehabilitation patient care.91
Irrespective of the conceptual model of care—rehabilitation versus prospective surveillance—both require that patients have health insurance. Massachusetts state law requires health insurance as a requisite for state residence. With the newly enacted Affordable Care Act, it may be that rehabilitation services may be easier to access but it is too early to tell at this time. Regardless, the availability of culturally and linguistically relevant rehabilitation health services may be limited.92 Once this barrier is overcome, the penetration of access to healthcare services will be mixed with improvement or limited improvement.93,94 Nevertheless, the quality of care may not be optimal, as has been shown to be the delivery of mental health services to racial and ethnic minorities.95 Further studies may wish to account for culturally and linguistically accessible, available, and quality rehabilitation services.
Currently, there is little information on physical therapy to address impairments among minority cancer survivors. Our study suggests that the burden of impairments for low-income cancer survivors of Puerto Rican descent may be high and undertreated, regardless of insurance status and despite relatively few barriers to care. The low rate of physical therapy utilization we noted suggests a need for specialty rehabilitation services for cancer survivors.
Our study supports increased education for healthcare providers on impairments that cancer survivors face. Persistent side effects may escalate into impairment spilling over into other aspects of life, including the ability to return to work,96 and may lead to physical disability12 with real and lasting implications for income earnings potential over one’s lifetime. Our results suggest that strategies to enhance opportunities for the access and utilization of rehabilitation services may reduce the burden of impairments experienced by low-income cancer survivors.
This work was supported by an internal seed grant from Northeastern University, Boston, MA, and by National Institutes of Health grants from the National Institute on Aging P01 AG023394, and National Heart, Lung, and Blood Institute, P50 HL105185. We are grateful to Lindsay Mancini, MPH, who conducted the follow-up interviews for this study and Elisa Lopez Martinez who assisted with data entry.
Author Disclosure Statement
The authors have no conflicts of interest to report.
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