Mental Health of Adolescent and Young Adult Cancer Survivors

Mental Distress and Healthcare Utilization among Survivors of Adolescent and Young Adult Cancer: A Cross-Sectional Analysis of the National Health Interview Survey

Running Title: Mental Health of AYA Cancer Survivors

Précis: Over 30% of survivors of adolescent and young adult cancer reported non-specific moderate or severe mental distress vs. 20% of the comparison group. Only 14% of survivors reported seeing a mental health professional in the previous year. Moreover, 75% and 52% of survivors with moderate and severe distress, respectively, had not talked to a mental health professional in the previous year.

Abstract

Objectives: Examine the prevalence and correlates of mental distress among survivors of adolescent and young adult (AYA) cancer and a comparison group.

Methods: 875 AYA cancer survivors, diagnosed ages 15-39 years, who were at least 5 years since their initial diagnosis, were identified from the 2013-2014 National Health Interview Surveys. A comparison group was created. Kessler’s non-specific mental/psychological distress scale was used to examine none/low, moderate, and severe distress. Whether individuals talked to mental health professionals in the previous year, and if they could afford mental healthcare were also examined. Variables (i.e., demographics, behavioral [e.g., smoking status], comorbidity and mental health visits) associated with distress among the two groups were identified using multinomial logistic regressions.

Results: Survivors reported mental distress more often than the comparison group (moderate: 23.2% vs. 16.9%, severe: 8.4% vs. 3.0%, p<0.001). Survivors cited not affording mental healthcare more often (6.4% vs. 2.3%, p=0.002). Moreover, 74.7% and 52.2% of survivors with moderate and severe distress, respectively, had not talked to mental health professionals. Contrary to the comparison group, survivors who were current smokers reported severe distress more often (relative risk=3.59, 95% confidence interval=1.46-8.84, p=0.01) than non-smokers. Having public and no insurance vs. private insurance, and report of sleep-related trouble in the previous week were associated with greater distress among survivors.

Conclusion: AYA cancer survivors are more likely to demonstrate mental distress than individuals without cancer. Yet, few survivors may be receiving professional mental health services. Survivors need greater access to mental health screening and counseling to address the current gaps in care delivery.

Key words: adolescent and young adult cancer, mental distress, mental healthcare access

Introduction

Individuals with cancer may experience greater mental distress than those without cancer.^1,2 Management of mental distress may be particularly challenging for survivors of adolescent and young adult (AYA) cancer—defined as individuals who were diagnosed with cancer between 15 and 39 years of age.^3-6 The AYA age range is a key time of development and social growth,³ and these patients may undergo psychosocial and social role changes (transitioning to college/work and building families) during the critical time of survivorship,⁷ which may increase distress.^8-10 AYA cancer survivors are also prone to unhealthy behaviors (e.g., cigarette smoking),¹¹ which may elevate the risk of mental disorders, such as, depression.¹² Poorer self-reported mental health status has been observed among AYA cancer patients compared with the general population,¹³ and this distress may continue over time.¹⁴

There may be inadequate treatment for mental health-related illness in the U.S.^15-17  Identifying individuals who may be at risk for mental illness and examining how best to provide treatment to meet their needs is a critical public health issue.^18-22 Moreover, there is a growing policy-related movement toward reforming the delivery of mental healthcare (e.g., increase the number of child psychiatrists) in the U.S.²³Mental health coverage expansion is also a key element of the Affordable Care Act.²⁴ Yet, there is limited information on the mental health status of survivors of AYA cancer—a particularly vulnerable patient population—and whether the current system meets their mental healthcare needs.

Research indicates that there exists a myriad of factors (demographic, socioeconomic, behavioral [e.g., smoking], health [e.g., comorbidity] and medical factors [mental health visitation]) that may be associated with mental distress.^1,2,20,25 For example, cancer survivors who are unmarried or uninsured report greater mental distress that their counterparts.¹ Being a current cigarette smoker and trouble sleeping have also been associated with poor psychological functioning.^12,26 Cancer survivors have comorbid conditions more often than those without cancer,^11,27 and greater prevalence of comorbidity may also be associated with adverse mental/emotional well-being and distress.¹ Knowledge of how these factors may affect distress among AYA cancer survivors and their comparison counterparts is scarce.

The present study used the National Health Interview Survey (NHIS) to evaluate the prevalence of non-specific mental distress among survivors of AYA cancer in comparison to individuals without a history of cancer matched on age, sex and other variables. Related to this, we identified factors that were associated with mental distress both among survivors and the comparison group. We hypothesized that survivors would report distress more often than the comparison group, and that being uninsured and being a current smoker would be associated with greater distress. Our second objective was to examine whether survivors with distress report using mental healthcare in the past year and whether they faced affordability barriers in receiving this care. We hypothesized that survivors would report greater needs for mental healthcare and more affordability barriers to receiving mental healthcare than the comparison group.

Methods

Data

The NHIS is an annual, in-person, nationwide health-related survey of the non-institutionalized civilian population in the United States.^28,29 The NHIS is an important national resource and these data have been used previously to evaluate health outcomes (e.g., mental health, comorbidity and behaviors) among cancer survivors.^1,11,30 Multistage sampling, clustering and stratification is used in the NHIS to collect representative data.^28,31 We used the 2013-2014 adult survey data component of the NHIS, which include information on health conditions for adults, 18 years or older. The response rates for the NHIS adult surveys were 58.9% and 61.2% in 2014 and 2013, respectively.^32,33 The adult survey data component was merged with the person-level data in NHIS to extract information on variables, such as, insurance status. The University of Texas Medical Branch’s IRB deemed that this study does not require a review since the NHIS data are publicly available.

Survivors and Comparison Group

NHIS participants were asked if they had ever been told by a doctor or other health professional that they had cancer or malignancy of any kind. Information on cancer diagnosis and age at diagnosis was also collected. 71,197 adults with non-missing information on cancer diagnosis were identified; 6,542 reported having diagnosed with cancer at any age. We excluded non-melanoma skin or other unknown skin cancers.¹¹ Of these, 1047 patients reported being diagnosed with initial cancer at AYA ages, i.e., between 15-39 years of age. Delineating the appropriate age at diagnosis for AYA cancer survivors for conducting health outcomes research may be challenging.⁴ We chose to follow the National Cancer Institute’s age group of 15-39 years of age at diagnosis to define AYA cancer.^4,5 Previous studies with AYA cancer survivors in the U.S. have also used this age definition for oncology-based outcomes research, including the national AYA Hope Study.^6,11,34-36 We restricted our sample to 877 survivors of AYA cancer who were at least 5 years since diagnosis. Two individuals with missing information on race and ethnicity were excluded, for a final sample of 875.

We used propensity score matching to create a comparison group following our previously published methodology.^11,36,37 Briefly, a multivariable logistic regression was estimated with 64,655 adults with no history of cancer and 875 AYA survivors. The dependent variable was survivors or comparison group, and independent variables included sex, age at survey, race and ethnicity, census-region and survey year. We followed the general rule of matching—variables such as marital status and insurance may be affected by cancer diagnosis (e.g., survivors are less likely to be married than their counterparts);³⁸ therefore, these variables were excluded from propensity score matching.^11,36,39 The predicted values from this regression were used to match one closest-score individual without a history of cancer with each survivor, which resulted in a sample of 875 individuals for the comparison group.

Mental Distress

We employed the widely used Kessler K6 non-specific distress scale to identify mental distress.^40-43 The K6 scale is a validated population-based measure for evaluating distress, and has good precision, strong and consistent psychometric properties.⁴⁴ The K6 index has been found to be highly correlated with diagnosed mental disorders/emotional impairment, including mood disorders, depression and anxiety, as well as mental healthcare utilization and expenditures.^40,45-47 This index has been used to evaluate mental distress among diverse and vulnerable populations such as cancer survivors,^1,2,25,48 cancer caregivers,⁴⁹ patients with substance abuse problems,⁵⁰ and patients with asthma.⁵¹

The six-item K6 scale in the NHIS asks respondents how frequently in the past 30 days they felt nervous, hopeless, restless or fidgety, worthless, sad, and that everything was an effort. For each symptom, a value of 0 to 4 is assigned to the responses: “none of the time” to “all of the time”. Sum of the responses yields a K6 score ranging between 0 and 24.⁴⁰ Thresholds that have been previously validated for detecting none/low, moderate, and severe mental distress are 0≤K6<5, 5≤K6<13 and K6≥13, respectively.^40,44

Covariates

Covariates were chosen from available data within NHIS based on previous literature demonstrating effects on mental distress.^1,2,20,25 Demographic variables included sex, age at survey, race and ethnicity, marital status, and education. Insurance status (any private, only public and uninsured) in the previous year, which may affect the ability to access mental health services, was also included.

We created a comorbidity indicator from individually reported health conditions including asthma/chronic obstructive pulmonary disorders (includes diagnosis of chronic bronchitis in the past year and emphysema), diabetes, heart diseases (includes coronary heart disease, angina, heart attack, and other heart conditions), liver diseases, kidney diseases and stroke. Diagnosis of each condition was coded as 0 (no) vs. 1 (yes). Responses across all conditions were then summed to create a comorbidity indicator—evaluated as a categorical variable (none, at least 1, or 2 or more comorbid conditions).¹¹

Using the self-reported data, we created an indicator for no trouble falling or staying asleep vs. trouble falling and staying asleep at least one time within the previous week. Smoking status compared current cigarette smokers vs. former/never smokers.¹¹

Mental health visitation was examined by asking participants, “During the past 12 months, have you seen or talked to any of the following healthcare providers about your own health? A mental health professional such as a psychiatrist, psychologist, psychiatric nurse, or clinical social worker (yes or no).” Affordability-related reason for not accessing mental healthcare, was measured by the response to the question—“During the past 12 months, was there any time when you needed mental healthcare or counseling, but didn’t get it because you couldn’t afford it? (yes or no).”

For survivors, age at initial cancer diagnosis, number of diagnoses, and cancer at initial diagnosis were also evaluated.

Statistical Analysis

Summary statistics (frequency and weighted %) of study variables were estimated. We compared the study variables between survivors and comparison group using Chi-Square tests. Bivariate analyses were conducted to compare distress across variables separately for survivors and the comparison group. Results for survey year and census-region are excluded for brevity.

To examine the associations between distress and covariates, we estimated multinomial logistic regressions separately for survivors and comparison group. The dependent variable in these regression models was mental distress (low/none, moderate or severe), and independent variables included demographics, insurance status, comorbidity, behavioral factors and mental healthcare visit. For survivors, we also included age at diagnosis and number of diagnoses as independent variables. To adjust for time and region-specific differences, we included survey year and region (Northeast, Midwest, South and West) as previously done.³⁷ We report the relative risk ratios (RR), i.e., the probability of having moderate and severe distress relative to none/low distress, and 95% confidence intervals.

NHIS sampling procedures were accounted for by using adult survey weights, strata and primary sampling unit, and sampling weights from 2013 to 2014 were divided by 2.⁵² The “SVY” package was used to estimate the weighted results; “PSMATCH2” command was used to implement propensity score matching.⁵³ Two-sided statistical significance was considered for alpha at the 0.05 level. All analyses were conducted in Stata 13.0 SE (College Station, TX).

Results

Participant Characteristics

Most survivors (87.6%) were diagnosed with one cancer (Table 1). Cervical, breast, or ovarian/uterine cancers accounted for 56.8% of all diagnoses. Over a half were diagnosed at 30-39 years of age. The mean time since initial diagnosis was 23 years (standard deviation=13.9).

In Table 2, survivors reported comorbid conditions, trouble falling/staying asleep and being current smokers more often than the comparison group. More survivors reported seeing a mental health professional than the comparison group (13.9% vs. 8.3%, p=0.003).

Mental Distress and Covariates

Figure 1 demonstrates the increased prevalence of mental distress in survivors (moderate=23.2%; severe=8.4%) relative to the comparison group (moderate=16.9%; severe=3.0%) (p<0.001). Many survivors (moderate=74.7% [n=155]; severe=52.2% [n=47] vs. none/low=94.2% [n=515], p<0.001) and the comparison group individuals (moderate=81.3% [n=126]; severe=58.1% [n=20] vs. none/low=95.2% [n=640], p<0.001) at risk of distress had not seen a mental health professional in the previous year (results not reported in tables). Survivors were significantly more likely to report that they could not afford mental healthcare (6.4% [n=54] vs. 2.3% [n=20] of the comparison group, p=0.002). Among survivors who reported not being able to afford mental healthcare, those with moderate and severe distress (45.7% [n=21] and 38.8% [n=26], respectively) reported this affordability barrier more often than those without distress (15.4% [n=12]) (p<0.001).

Bivariate analyses show that survivors diagnosed at younger ages were more likely to report distress than those diagnosed at older ages (Table 3). Survivors with more than one cancer were more likely to report distress. Similar to the comparison group, survivors who were married/living with a partner were less likely to report distress than never married and divorced, separated or widowed survivors. Lower education was associated with distress among survivors only. Public or no insurance, the presence of comorbidities, trouble sleeping in the previous week, being a current cigarette smoker, or having seen a mental health professional in the previous year were associated with higher reports of distress in both groups.

In multinomial analyses (Table 4), survivors with 2 or more cancer diagnoses had 2.1 times the risk of reporting moderate distress than survivors with only one cancer.  Severe distress was not associated with number of cancer diagnoses. Being non-Hispanic white was associated with a .39 times lower risk of severe distress than being a Hispanic among survivors. Compared to survivors with the private insurance, the risk of moderate distress was 2.48 and 1.93 times greater if the survivor had public insurance or no insurance, respectively, while insurance status was not associated with severe distress. The risk of moderate (RR=1.61) or severe (RR=2.09) distress significantly increased if the survivor had 2 or more comorbid conditions. Among survivors, being a current smoker was associated with a 3.59 times higher risk of having severe distress but no difference in the risk of moderate distress was observed.

In the comparison group, gender, age, race/ethnicity and marital status were not associated with distress, and education attainment was associated with lower risks of severe mental distress. Sleep-related problems and visiting a health professional in the previous year were associated with greater distress (moderate and severe) among both the groups.

Discussion

We investigated the prevalence of non-specific mental distress among survivors of AYA cancer in the NHIS data, and identified gaps in mental healthcare delivery for this important population. The prevalence of severe mental distress among survivors was about three times as much as in the comparison group (8.4% vs. 3.0%). Survivors were also at risk for moderate distress more often than the comparison group (23.2% vs. 16.9%). While survivors used mental healthcare more frequently than the comparison group, an overwhelming majority of survivors (86%) had not talked to a mental health professional in the previous year, suggesting that there may be mental health concerns that are undertreated in this population. Each year, over 70,000 AYAs are diagnosed with cancer in the U.S.,³ and as per our estimates many of these survivors may be at risk for mental distress in the future and not receive adequate mental healthcare. Our results point toward the need of evaluating and developing distress tools specifically for AYA oncology in an attempt to identify targeted strategies for treating psychological illness.

Mental distress may substantially impact survivors’ functioning at the work, household and family level,⁴⁰ and it may be particularly challenging for those diagnosed with cancer at AYA ages. An earlier study with NHIS data reported that 5.6% of adult-onset cancer survivors had severe mental distress,¹ which is lower than the proportion we observed among AYA cancer survivors (8.4%). Survivors of AYA cancer are at risk for encountering psychosocial changes during treatment/survivorship that may increase the potential for mental distress.³ Greater distress among survivors may also be caused by treatment-related fatigue and psychological effects of a cancer diagnosis (e.g., fear of recurrence/death).¹ Periodic mental health and social well-being screenings are components of survivorship guidelines because of the recognition of the connection between mental health and quality of life.^54,55  Despite these guidelines, identification of mental distress in survivors may be problematic because providers may lack the resources/time to effectively screen and refer patients to mental healthcare.

Engagement with mental health services represents a substantial challenge. Individuals who talked to a mental health professional in the previous years had more distress suggesting that some survivors are accessing services. Unfortunately 75% and 52% of survivors with moderate and severe mental distress, respectively, had not talked to mental health professionals in the previous year. Of concern is the survivors’ reports of not being able to afford mental healthcare. Our data are post the Affordable Care Act implementation, yet 15% of the survivors were without insurance. Survivors may be impacted financially by cancer diagnoses that may increase the potential for mental distress.⁵⁶ Previous recommendations that uninsured survivors be referred to free-of-charge mental health community services²⁰ may not be an adequate strategy. The current mental health workforce is inadequate for survivor needs, even if patients are able to pay.⁵⁷

In our bivariate analysis, AYA cancer survivors diagnosed at older ages reported severe distress less often than those diagnosed at younger ages, although diagnosis age was not statistically significant in our multivariable regression. The developmental and mental health care needs of patients diagnosed at younger ages (15-19 or 20-29 years) may be different than those diagnosed at older ages (30-39). Patients with younger ages may struggle with their performance at school or starting college potentially leading to stress whereas older patients may be at risk for employment and job-related stress. Using the age range of 15-39 years at diagnosis may capture the breadth of concerns that may influence the likelihood of distress across the AYA age spectrum. Also, as the literature has historically focused on pediatric cancer survivors or survivors of cancers diagnosed at older ages, it is extremely important to investigate the full AYA age range to begin identify age-specific needs for this important population.

Survivors with comorbidities were more likely to report distress, which is consistent with an earlier study with cancer survivors.¹ Survivors and comparison group individuals who reported problems with falling/staying asleep reported mental distress more often.²⁶ Hispanic survivors were more likely to report severe mental distress than non-Hispanic white survivors, which has been observed among general population.⁵⁸ Very importantly, currently smoking survivors reported severe distress more often than those who did not smoke currently, unlike the comparison group. This is crucial as over 30% of survivors of AYA cancer were current smokers, and this is a group who is about 4 times more likely to report severe distress. Our previous research has shown that survivors of AYA cancer who currently smoke cigarettes are at a greater risk for reporting comorbidity and poorer general health,¹¹ and the present study extends that by reporting greater mental distress among cigarette smokers.

As is the case with most survey-based studies, our findings on mental distress and receipt of mental healthcare services may be influenced by self-report bias. The NHIS data used in our analysis were not specifically collected for cancer survivors. Therefore, cancer diagnosis in the NHIS may not represent the national incidence. For example, our survivor population was predominantly female, similar to previous surveys of this population.^37,59 These skewed data may bias cancer diagnoses when compared to medical registry data.⁶⁰ However, mental distress, risk taking behaviors and receipt of mental healthcare services are not captured by cancer registries, and the NHIS data provide important preliminary and prevalence-based insights for designing future studies that may use more accurate and refined data to assess mental health concerns of AYA cancer survivors.

Future studies should investigate how mental distress differs by diagnosis and treatment. Sample size limitations prevented sub-analysis by cancer type and NHIS does not include treatment information. We examined mental health using a cross-sectional dataset; however, mental health lies along a continuum, and may change over time. We recommend future longitudinal examination of the course and influences of mental distress among AYA survivors.

To conclude, the present study evaluated non-specific mental distress among survivors of AYA cancer in comparison to individuals without cancer. Survivors reported distress at greater rates than the comparison group. Yet, few survivors reported seeing mental health professionals. Cancer survivorship and primary care physicians should be aware of the high risk of mental distress in this population. Formal counseling from mental health professionals must be financially possible when needed. Alternatives including mental health awareness/counseling from medical professionals or online help/recovery tools may integrate mental healthcare into primary care settings,⁶¹ and promote mental health among survivors of AYA cancer.

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Table 1: Diagnosis Information for Survivors

^a Includes leukemia, lymphoma and other blood cancers.

Table 2: Characteristics of Survivors and Comparison Group

^a The NHIS sampling design was incorporated to compute weighted %. Bolding indicates statistical significance.

^b Please see the text for the list of comorbidities.

Table 3: Bivariate Analyses for Mental Distress

^a Age at diagnosis and cancer diagnosis frequency is only application to survivors. Bolding indicates statistical significance.

Table 4: Multinomial Logistic Regression Results for Mental Distress^a

^a RR refers to the relative risk ratio and the base outcome for these ratios is none/low mental distress. Age at study and diagnosis were included as continuous variables. Age at diagnosis and diagnosis frequency was only included for survivors. Regressions were adjusted for survey year and region. Bolding indicates statistical significance.

^b Included as linear terms.

Figure 1: Mental Distress among Survivors and Comparison Group^a

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^a The percent on the y-axis indicate the weighted proportion of individuals. Please see the text for mental distress definition.