Adequacy of Depression Treatment in Spouses of Cancer Survivors: Findings From a Nationally Representative US Survey

There are an estimated 15.5 million cancer survivors in the USA1 (defined as any person diagnosed with cancer, from the time of initial diagnosis2). Given that the adverse impacts of cancer extend beyond the cancer patient themselves,2^, 3 millions more family members are considered “co-survivors” of the disease. Co-survivors often serve as informal cancer caregivers, playing a critical role in the well-being of individuals with cancer. In addition to supporting the survivor through their illness, co-survivors often struggle with their own emotional distress. The caregivers of cancer survivors have been found to have equal, if not greater, rates of depression than the survivors themselves (12–59%).4 Spouses in particular often experience greater burden, strain, or distress than other family caregivers5^, 6 and are more likely than the general population to experience depression.7^, 8

Recent research has shown that when their spouses experienced depressed mood, cancer survivors were four times more likely to become depressed over the next year,9^, 10 supporting theoretical and emerging empirical work around the interrelationship between families/caregivers and cancer survivors.11 Given the association between depression in cancer survivors and adverse outcomes ranging from decreased medication adherence to premature mortality,12^–17 appropriately treating spousal depression may afford an opportunity to improve outcomes for both cancer survivors and their spouses. However, despite the existence of effective pharmacotherapy and psychotherapy treatments,18many cancer caregivers (including spouses) may be at risk for under-treatment of depression,19 as informal caregivers often report struggling with self-care,20 and likely face time, cost, and access constraints that may be barriers to receiving health care. Furthermore, low socioeconomic status has been associated with less adequate depression treatment21 and rural populations face known mental health treatment challenges.22 Yet, we know very little about the unique needs and outcomes of rural caregivers.

This study sought to evaluate how cancer caregivers with depression currently receive treatment in the USA. Specifically, we sought to determine how treatment patterns for spouses of cancer survivors differ from the general population, and whether there are socioeconomic or geographic disparities in treatment rates. Better understanding treatment patterns and disparities among cancer caregivers will inform medical practice and caregiver education, with important implications for the well-being of cancer survivors and their families.

Data were obtained from the Medical Expenditures Panel Survey (MEPS). The MEPS is a household-based, nationally representative survey of US adults. Each year, the MEPS collects data on a new panel of households and each panel is followed for five time points over a 2.5-year period. For this study, we concatenated data from panels 9–17 collected between 2004 and 2013. Detailed information about MEPS methodology and data is available at http://meps.ahrq.gov.

Sample Selection

MEPS respondents were eligible for this study if they (1) were married to someone with or without cancer and (2) reported having depression. To identify depressed spouses of cancer survivors, we first used the MEPS medical conditions file to identify adults who had a cancer-related health-problem, medical event, or disability. Adults with any type of cancer or malignancy (excluding those with only non-melanoma skin cancer) were categorized as survivors. All other adults were categorized as general population.

We then linked both survivors and the general population with their spouses (if applicable) using a spousal ID. Depression status was then determined using the Conditions Enumerations section of the MEPS, in which participants reported their physical and mental/emotional conditions, as well as conditions related to any medical events or disabilities. Using this information, MEPS coders assign truncated ICD-9 codes. Participants with ICD-9 code 296 or 311, during any round, were classified as having depression. All depressed spouses of cancer survivors were included in the final sample; couples in which both spouses had cancer were excluded. In the comparison sample of depressed spouses in the general population, when couples both reported depression an index spouse was randomly selected. This resulted in an eligible sample of 4001 adults (n = 229 spouses of cancer survivors, n = 3772 comparison spouses; Fig. 1).

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Co-survivors serve as an integral part of the care team for cancer patients, but may also suffer from unaddressed emotional needs. We performed an analysis of an existing database and found that spouses of cancer survivors were less likely to receive guideline-concordant depression treatment than comparison spouses. Our findings support previous research indicating that distressed family caregivers of lung cancer patients underuse mental health services.30 In our analysis, co-survivors in rural areas were particularly at risk. We did not observe similar disparities in socioeconomic status, and co-survivors and comparisons with depression did not differ in their receipt of any depression treatment (versus no depression treatment). To our knowledge, this is the first study to evaluate rates of guideline-concordant depression care among caregivers.

It is noteworthy that we found differences in guideline-concordant treatment, even though all eligible subjects reported having depression. One interpretation of this finding is that co-survivors, and particularly rural co-survivors, are at risk for under-treatment of depression. Under-treatment of depression is prevalent among the general population.31 Caregivers may be disproportionately affected as they often struggle with self-care20 which may extend into mental health care.30 Cancer caregivers have reported seeing mental health service use as a “last resort” and prioritizing the care recipient’s needs above their own,32 potentially leading them to be less likely to seek out or adhere to treatment for their depression.

In addition, expectations and assumptions around cancer and depression may play a role. Anecdotal evidence from our clinical practice suggests that many co-survivors and patients interpret their depression as part of the “cancer experience”: they feel that they are supposed to be depressed and assume that it is part of the “necessary suffering” of cancer, and therefore do not seek treatment. They may feel that since they cannot change the circumstances or their survivor’s diagnosis, they also cannot change or control their depression. However, to our knowledge, this mindset has not been examined in the literature. Qualitative and quantitative studies are needed to determine to what extent this mindset may act as a modifiable barrier to depression care.

An alternative explanation of these findings relates to differing levels of depression symptoms and/or treatment needs in co-survivors compared to the general population. Although treatment guidelines are a useful tool, they are not meant to supersede clinical judgment. It is therefore possible that lower (guideline non-concordant) levels of treatment were the best course of care for some co-survivors in this study. Although we controlled for level of depressive symptoms to try to mitigate this confounding factor, studies with richer clinical data will be needed to thoroughly evaluate this possibility.

Rural co-survivors received guideline-concordant treatment at particularly low levels. Previous work in the general population33 found no overall rural-urban differences in receipt of depression treatment; similarly, in our study, rural comparisons were statistically no different than urban comparisons to receive treatment. This suggests that caregiving may contribute to under-treatment of depression in rural areas in unique ways. Caregiving may amplify barriers to care observed in rural areas, including the well-documented shortage of mental health providers34^, 35 and possible greater perceptions of stigma and lower belief in the efficacy of and need for treatment in samples from rural versus urban areas.36 Caregiving in particular is associated with time and cost burdens; in rural areas, where the geographical distance to a pharmacy or mental health provider may be farther, such time costs may be more likely to present insurmountable barriers to care.

The findings from this study suggest opportunities for improving treatment of depression in cancer co-survivors, ranging from co-survivor education to implications for clinical care. Caregiver-specific interventions, while effective at decreasing burden, have not been successful in reducing caregivers’ depression.37 This emphasizes the need for guideline-concordant depression treatment for caregivers who are experiencing depression. Given the key role primary care plays in delivering mental health care,38^, 39 this information may be particularly useful for primary care practice. For example, asking about caregiving responsibilities may enable primary care providers to identify high-risk patients who will benefit from close follow-up to maximize the probability that they persist with their depression treatment. Enhancing mental health referrals with active follow-up may also encourage uptake of recommended treatments, and may be particularly important in a rural population.

Oncology and specialty teams may also have a role in supporting co-survivors’ mental health, by integrating co-survivors into family-centered cancer care. Several models for such integration are beginning to emerge, including multidisciplinary hospital-based caregiver clinics,40 caregiver supports through palliative and hospice care,41 and the Family Caregiver Program at the Department of Veterans Affairs.42 Most organizations, however, do not yet have a formal, standardized mechanism for integrating co-survivors into cancer care.43 Early involvement of palliative care—with an additional emphasis on evaluating caregiver depression and stress—may also facilitate optimal mental health care for co-survivors.

Finally, enhanced patient education may improve depression treatment outcomes for co-survivors. Addressing misconceptions about the efficacy and purpose of depression treatment—in general and for caregivers specifically—may reduce feelings of futility and improve depression treatment plan adherence. Such education may be particularly critical for rural co-survivors, for whom stigma and negative beliefs about depression and treatment may be particularly relevant.36 Furthermore, community-level approaches to decreasing cultural barriers such as stigma, or increasing access to mental health care may benefit all communities, and rural communities in particular.

This study should be interpreted in light of several limitations. Our definition of guideline-concordant depression treatment was guided by several assumptions and estimates made necessary by the dataset. Most panels of the MEPS do not include questions about caregiving; actual caregiving involvement (i.e., spouses’ provision of emotional, function, or financial support) is therefore assumed rather than documented. We could not assess subjects’ adherence to treatment or determine the appropriateness of guideline non-concordant treatment on an individual level. This study combined data across cancer types and we were unable to isolate cancer stage; carcinomas in situ were therefore included along with later stage cancers. There are some differences between the characteristics of the co-survivor and comparison groups. We opted to control for these possible confounders in the statistical analysis rather than through matching procedures. Finally, we were only able to examine spouses in this dataset; the findings may therefore not be generalizable to other caregiving populations or relationships. Nevertheless, this study makes use of a large, national dataset with household-level data, and provides compelling, generalizable evidence of differences in treatment for co-surviving spouses with depression, particularly in rural areas. The findings should therefore spur future research to determine these differences and the long-term impacts of such disparities with more precision.

In conclusion, this study found that spouses of cancer survivors were less likely to receive guideline-concordant treatment for depression than the general population of married adults. Those in rural areas were at particularly high risk of potential under-treatment. The findings highlight the need for enhanced follow-up among cancer co-survivors, to encourage uptake of and adherence to depression treatment. Innovative approaches to addressing barriers to mental health care, including family-centered cancer care and community-level approaches to depression education and stigma reduction, may also improve co-survivor outcomes, particularly in rural areas. Future research should examine and seek to mitigate clinical-, community-, and individual-level barriers to depression care for cancer co-survivors, with a focus on how the barriers and solutions may differ by rurality.