Cancer survivors may be burdened by the effects of cancer for years after completion of treatment. For some survivors, cancer and its treatment come with long-term or chronic pain [1]. The prevalence of long-term pain is reported to be two times higher among cancer survivors compared to the general population, with an estimated 5.39 million cancer survivors reporting chronic pain [2]. Cancer-related pain is defined as daily pain lasting 3 or more months that is caused by the malignant process itself, anticancer treatment, or comorbid conditions [3, 4]. This persistent pain survivors experience for years after diagnosis has been considered a “consequence of cancer” or “the cost of survival” [2]. Within the healthcare system, cancer survivors have expressed that their pain is “easily dismissed” and there is not an appropriate system in place for management of this long-term pain, especially after the conclusion of cancer treatment and care by their oncology team [2, 5, 6].

Current practice guidelines from the American Society of Clinical Oncology published in “Management of Chronic Pain in Survivors of Adult Cancers” recommends that clinicians should screen cancer survivors for pain at each encounter [1]. With such assessment, clinicians should determine when pain management is necessary and consider nonpharmacologic and pharmacologic interventions [1]. Recent findings show that pharmacological treatments are the principal modality of pain control provided to cancer survivors [7]. Cancer survivors are prescribed opioids at a higher rate than those with non-cancer pain, with an estimated 5% of all opioid prescriptions in the United States going to cancer patients [8].

Through epidemiologic research there is evidence associating multiple clinical factors to long term cancer-related pain, and to date a few sociodemographic factors have been associated with cancer-related pain as well. Known clinical factors associated with pain are cancer site, cancer stage, treatment type and other physical comorbidities [6, 9–11]. All cancer treatments have the potential to cause long-term pain, notably neuropathic pain from surgery and chemotherapy, and pain from tissue damage due to radiotherapy [6]. By cancer site, head and neck cancers have shown higher proportions of patients reporting pain [10, 12], as well as breast cancer, although this cancer is studied more extensively than others [8, 11, 13]. Cancer survivors who are female, have a higher BMI, depression, and anxiety disorders are more likely to report cancer-related pain [5, 14, 15]. There are equivocal findings on the relationship with cancer-related pain and age, with some research showing direct and some inverse relationships between these variables [5, 13–15].

Additionally, there are many social factors associated with cancer-related pain including socioeconomic status, educational attainment, and social connectedness [14]. Research has found that lower levels of all three of these factors are related to chronic pain in general, and specifically cancer-related pain [14, 16]. Those with lower socioeconomic status and educational attainment face greater barriers to pain treatment, and those with poor social connectedness have hindered pain perception and coping [17–19]. New research is showing evidence of an overlap between physical pain and social pain, with common neural and inflammatory pathways [20]. It is also likely that the interplay of clinical and sociodemographic factors influence a survivor’s response to treatment, and therefore the severity of their pain over time [16].

Cancer-related pain has been studied in samples limited to certain cancer sites, age groups, and single cancer treatment centers, with few studies that encompass a broad sample of participants [11]. The purpose of this analysis is to identify the clinical and sociodemographic factors associated with cancer-related pain among Utah cancer survivors during the early years after diagnosis and treatment. Additionally, we identify the most common modalities used to control pain. By using a representative sample of survivors ascertained through a population-based central cancer registry, this study can provide a more complete picture of the survivorship experience with cancer-related pain. Our findings have the potential to expand clinical understanding of factors which may be associated with cancer-related pain 2–5 years from diagnosis, thereby better informing clinical care and interventions to improve survivorship quality of life.

The analytic sample was comprised of 2232 individuals. Table 1 shows descriptive statistics for all survivors and stratified by reported experience of pain. The percentages displayed are weighted to account for survey sample design and nonresponse. There were 493 survivors (weighted percentage: 22%) who reported current physical pain caused by their cancer or cancer treatment.

One third of survivors were under age 57 at diagnosis, a third between the ages of 57 and 67, and the final third 68 years and older. Age at diagnosis was statistically significantly associated with experiencing cancer-related of pain, with 31% of the youngest tertile of survivors experiencing pain, followed by 18% of the middle age group, and only 15% of the oldest third (p <0.001). There was also a difference in experience of pain by sex (p <0.001) with a higher fraction of females experiencing pain (26%) than males (16%). The Utah cancer survivor population is largely non-Hispanic White (71%), with 80% of these survivors not reporting pain, compared to 77% of non-Hispanic survivors of any race other than White, and 64% of Hispanic survivors, a statistically significant difference (p = 0.001). Over half of survivors had a local stage at diagnosis (64%). Survivors who were at a more advanced stage at diagnosis reported pain at a higher proportion (distant stage 39%, regional 30%) compared to local stage (16%, p <0.001). The cancer sites that were represented by 40 or more survey participants are displayed in the table, and all other sites are grouped into the “Other” category. Breast cancer is the most common diagnosis, representing 21% of the survivors, followed by prostate cancer (17%), and melanoma (14%). There was an association between cancer site and experience of pain (p <0.001), with 37% of breast, 27% of lymphoma, and 23% of lung cancer survivors reporting pain. Survivors who had a caregiver during or after cancer were more likely to have pain (p <0.001). Social connectedness of survivors was associated with report of pain (p <0.001), and those categorized as most connected had the lowest proportion experiencing pain from cancer at 14.1%. Some types of insurance coverage (plans provided through an employer or union, Medicare, Medicaid, and Military-related healthcare) were statistically significantly associated with likelihood of having cancer-related pain. The total number of material financial hardships faced by the survivor was associated with reporting pain (p <0.001), and those with 3 or more hardships had the highest proportion experiencing pain from cancer at 40.8%.

As shown in Table 2, 40% of survivors experiencing pain had their pain under control with medication or treatment, and 36% had their pain under control without medication or treatment. The remaining 24% of survivors did not feel their pain is under control. The most commonly used treatment modalities were nonopioid analgesics (49%), physical activity (37%), local therapies (27%), opioids (17%), and antidepressants or anticonvulsants (14%). Survivors, on average, indicated using 2.2 different treatments from the provided list.

Adjusted odds ratios (ORs) and 95% confidence intervals (CIs) from the multivariable logistic regression model are displayed in Figure 2 (see Supplemental Table for univariable results). Younger survivors (Tertile 1, age < 57 years, OR 1.59, CI: 1.09, 2.34) were more likely to experience pain than the oldest third of survivors (Tertile 3, 68+ years). Compared to those with normal BMI, underweight and obese survivors both had higher odds of reporting pain (underweight OR 3.94, CI: 1.14,13.66; obese OR 1.58, CI: 1.10, 2.27). Those diagnosed with a distant stage cancer had higher odds of pain than those with a local stage (OR 2.87, CI: 1.81, 4.55). Breast cancer survivors had higher odds of pain compared to the reference cancer, colorectal cancer (OR 1.94, CI: 1.05, 3.57). Survivors who received 2 cancer treatment modalities (OR 2.07, CI: 1.41, 3.04), 3 or more modalities (OR 3.56, CI: 2.18, 5.83), or no treatment (OR 1.85, CI: 1.10, 3.12) had higher odds of pain compared to those who received 1 treatment type. Those without a caregiver during treatment had lower odds of pain than those with a caregiver (OR 0.52, CI: 0.34, 0.80). Survivors who have no insurance coverage (OR 0.41, CI: 0.17, 0.98) or unknown/missing coverage status (OR 0.49, CI: 0.17, 1.44) had lower odds of pain than those reporting coverage. Those facing material financial hardships had higher odds of pain than those who did not (1–2 hardships OR 1.90, CI: 1.34, 2.68; 3 or more hardships OR 2.95, CI: 1.94, 4.48). There were no statistically significant associations between cancer pain and survivor sex, years from diagnosis, or social connectedness in multivariable analysis.

Breast cancer patients comprised 22% of survivors and 40% of the female cancer cases in the study. After finding that breast cancer survivors had a notably higher prevalence of cancer-related pain (37% compared to 22% of all survivors), we repeated all analyses stratified by cancer site (breast vs. other). There were no substantial differences in the findings among only breast cancer patients compared to the remainder of the sample, thus results are not shown here.

This analysis provides an estimated prevalence of cancer-related pain among a representative sample of the recent cancer survivor population of the entire state of Utah. Just under a quarter of survivors (22%) experience current pain related to their cancer or its treatment, with 24% of those experiencing pain reporting that their pain is not under control. Survivors commonly use nonopioid analgesics, physical activity, and local therapies for pain control. Many factors were found to be significantly associated with the report of pain, in multivariate analysis including younger age, a BMI in the underweight or obese ranges, diagnosis with a more advanced stage cancer, and cancer of the breast. The analysis also showed association with cancer-related pain among those who received a higher number of treatment modalities, had a caregiver during treatment, were currently without health insurance, and those facing higher levels of material financial hardship. This study is notable in that our sample is without restriction by cancer site and is derived from a population-based registry rather than a single clinical practice or health center.

There are mixed findings to date on the relationship between age at diagnosis and cancer-related pain [5, 15]. We found that those aged below 57 were more likely to report pain than those under age 68 and above. More research is needed to better understand the relationship between age and the experience of cancer pain and the factors driving this association. To note, today’s cancer survivors are in a unique position as they face serious pain during an opioid epidemic [33]. A recent qualitative study by Marshall, et al. discovered that their sample of survivors would rather let their pain remain uncontrolled than risk addiction to opioids or be labelled as “drug-seeking” by their providers, commonly addressing this by taking the lowest suggested dose even when it did not fully relieve their pain [34]. The sample of survivors interviewed by Marshall, et al. expressed interest in pain treatments other than opioids or other pharmaceutical treatments, however explained that these were less likely to be covered by insurance and were difficult to obtain on a regular basis [34]. Financial barriers are especially prevalent in the younger cancer survivor population, where they are known to report their cancer diagnosis has a greater impact on finances, work, and school than their older counterparts [35]. The knowledge that younger survivors face chronic pain from cancer and its treatment and likely have many years of life ahead of them, highlights the importance of pain management in this population.

Our analysis confirmed that survivors of metastatic cancers and those who received more extensive cancer treatment (treatment with 2 or more modalities) are more likely to experience cancer-related pain than those with earlier stage disease and those who received one type of treatment, even while controlling for other factors. These findings are consistent with prior literature [6, 8] and highlight the physical toll that multimodal cancer treatment can take. We also found that cancer site is associated with the likelihood of experiencing cancer-related pain. While breast cancer survivorship has been well researched, it is usually studied in isolation and is not usually compared to other cancer sites [8, 11, 15]. In general, there is a lack of literature comparing cancer-related pain by site, with the most recent systematic review from 2007 [12]. Our analysis found that the odds of reporting pain as a breast cancer survivor are 1.94 times that of a colorectal cancer survivor, and there were no other cancer sites that had statistically significant differences compared to the reference site, colorectal cancer. Prior literature has found that breast cancer survivors commonly experience chronic pain in the ipsilateral limb, aromatase inhibitor-induced arthralgia, lymphatic complications, and numbness [8, 11, 15]. This finding suggests that it may be beneficial to closely monitor breast cancer survivors’ pain after conclusion of cancer treatment. Our analysis did not include a “head and neck cancer” grouping and therefore was unable to confirm previous findings that this cancer site is associated with higher reports of pain. Looking at the proportion of Utah cancer survivors experiencing pain, oral cavity and pharynx survivors had the 5^th highest percentage (22%) out of the 11 specific sites examined.

Our analysis showed that those with a caregiver during cancer treatment had higher odds of pain than those without a caregiver. This could be interpreted multiple ways, one explanation being that those facing aggressive cancer and treatment sought out or required additional support during treatment, and due to the effects of this aggressive cancer are continuing to experience pain [36]. Another finding from the multivariable model was that survivors without insurance coverage were less likely to report pain than those with coverage. Although this is a unique finding that differs from current literature, it should be interpreted with caution due to the small number of survivors represented in the “No coverage” (2%) and “Unknown coverage” groupings (2%).

Our study further contributes to knowledge of cancer pain experiences by evaluating additional sociodemographic variables that are less studied but important to assess from a social determinants of health perspective [37]. We found that survivors who are experiencing 1–2 material financial hardships are 1.90 times more likely to report pain than those with 0 hardships, and those facing 3 or more hardships are 2.95 times more likely to report pain. Survivors with lower socioeconomic status may have fewer resources to help with pain management, as doing so can require additional medical appointments and treatment costs [19, 38, 39]. The treatments indicated by NCCN Pain Guidelines for cancer survivors are largely pharmacologic, with others requiring multiple medical visits such as physical therapy, interventional procedures, and psychosocial support [29]. These survivors may also have more demands and fewer resources to help with activities of daily living, which further exacerbates pain. After facing the cost of cancer diagnosis and treatment, survivors may have financial difficulties preventing them from managing cancer-related pain [40, 41].

The lack of an association between social connectedness and cancer-related pain indicates that pain experience doesn’t seem to hinder involvement with family or the community, or that those with stronger social connection have a different experience with pain than those with less connection. There was also no significant association between race and ethnicity and pain, and education level and pain, indicating that other social determinants of health have stronger relationships with pain. Although not explored in this analysis, mental health is another important factor in a survivors’ experience with pain [42]. Depression likely has a bidirectional relationship with chronic pain [43]. Some research shows chronic pain can lead to the development of depression [44], and depression has been known to aggravate and accentuate the pain experience [45].

Many pain control interventions have been studied among cancer survivors, with newer options such as medical cannabis, neuromodulary techniques, and psychological interventions. These interventions are important as they are generally associated with fewer side effects than traditional pharmacological options and can be used in conjunction with other treatments [1, 46–49]. The most common intervention reported among Utah cancer survivors were nonopioid analgesics, with very few survivors reporting use of cannabis, interventional procedures, or psychosocial support as methods of pain control. It is possible that there are some barriers to access these options, such as physical barriers presented by the COVID-19 pandemic, or shortages of providers knowledgeable in these interventions [50]. More research is needed to identify the most effective pain treatments and ensure access within the cancer survivorship community.

A limitation of this analysis is the cross-sectional nature of the data. Due to the study design, directionality between the clinical and sociodemographic factors and experience of pain cannot be assumed. A further limitation is the inability to determine objectively if the survivors’ pain is cancer-related. Cancer survivors in this sample may have concomitant chronic pain that is not directly attributable to cancer or its treatment, given that cancer is usually a disease of middle and older age when other causes of chronic pain may be involved [8]. However, the subjective nature of the survey questions do offer a unique angle that fully involves the survivor’s perspective of the impact of their cancer on their current state. Another limitation is that the survey did not include measures of all relevant factors that are likely associated with pain, such as mental health conditions. Next, while our sample is representative of the cancer survivor population of Utah, these results may not generalize elsewhere. Particularly with respect to race, since Utah’s survivor population is predominantly of White race, we were unable to analyze the data without collapsed race and ethnicity groupings. This limited our ability to fully assess the relationship between race and cancer pain with our data, where prior research has indicated Black cancer survivors are more likely to have pain [5, 51]. Lastly, we acknowledge that a portion of the survivors in our analysis were diagnosed and/or treated for cancer during the COVID-19 pandemic. It is possible that social distancing negatively impacted social connectedness, health communication, and access to care, worsening cancer-related pain in our survivor population [17, 50, 52].

In conclusion, chronic pain is a serious negative consequence of cancer which affects a range of cancer survivors for their lifetime. By using population-based samples of cancer survivors from central cancer registries we can better understand the magnitude of this problem. Findings from this analysis representing cancer survivors in Utah are consistent with recent studies on more restricted populations and highlight the need for greater attention to cancer-related pain. Cancer-related pain is not solely related to clinical features, and the findings here within social determinants of health can guide clinicians and researchers toward a better understanding of the needs of survivors. By further developing this understanding of the correlates of cancer-related pain, clinicians can apply the knowledge to tailor pain management to this unique population.