Disparities in Psychosocial Distress Screening and Management of Lung and Ovarian Cancer Survivors

INTRODUCTION

Studies have shown that 33%-50% of cancer survivors (ie, a person who has ever been diagnosed with cancer)¹ experience psychosocial distress at some point during their cancer treatment journey^2-7; differences in prevalence of distress vary by cancer type^3,4 and prognosis.^2,8,9 Distress in cancer survivors is defined as an unpleasant psychological, social, emotional, and/or spiritual experience that interferes with the ability to effectively cope with a cancer diagnosis, symptoms, or subsequent treatment side effects.¹⁰

Since 2016, the American College of Surgeons' Commission on Cancer (CoC) has required accredited programs to screen patients with cancer for distress at least once during their initial course of treatment and to document distress screening (DS) and follow-up to a positive screen.^11,12 DS provides an opportunity to identify survivors with psychosocial concerns who may be reluctant to discuss them with providers unless asked.^13,14 Addressing distress with timely psychosocial interventions reduces distress experienced by survivors, which can improve cancer-related outcomes and reduce strain on the medical system.^15-17 Screening for and managing distress in cancer survivors is an essential component of quality care,^18-20 and meeting psychosocial needs has been associated with longer survival.^21,22

Survival from lung and ovarian cancer is relatively low (5-year survival: 23% and 49%, respectively); lung cancer is the leading cause of cancer death among all Americans, and ovarian cancer is the fifth leading cause of cancer death among American women.²³ Lung cancer survivors experience high levels of distress.^24-28 In 2016, the National Academies of Science, Engineering, and Medicine called for increased study and attention on psychosocial needs of ovarian cancer survivors,²⁹ recognizing both high rates of depression, anxiety, and distress and under-representativeness in psychosocial research (including DS).³⁰

Studies of DS implementation in oncology settings have identified gaps and highlighted different factors to be considered in some survivor populations^31,32 and have documented racial disparities in screening for^33,34 and treating distress.^31,35 Successful implementation of routine DS in oncology settings requires thoughtful planning, appropriate use of a scientifically valid and culturally responsive tool, and appropriate follow-up.^18,32,36,37 Psychosocial distress among older (ie, over 60 years old) cancer survivors who are Black and Hispanic is relatively unknown, because of their under-representation in the literature.³⁸

Given the under-representation of both lung and ovarian cancer survivors in the existing psychosocial literature, this study focused on the extent to which these survivors received CoC-mandated DS and whether racial, ethnic, or other disparities existed in screening percentages or patterns of DS-related care. To our knowledge, this is the first study focused entirely on disparities experienced by lung and ovarian cancer survivors related to DS and management.

METHODS

We designed a mixed-method study that included a quantitative review of existing electronic health records (EHRs) to assess DS and management and qualitative interviews and focus groups with health care practitioners about challenges and facilitators of conducting DS and management. This article reports on the analysis of EHR data. A detailed description of the methods has been published previously.³⁹ Briefly, we enrolled 21 CoC-accredited health care facilities between August 2018 and May 2020 to participate in the study. Facility location and urbanicity were as follows: Midwest (4), Northeast (5), South (7), and West (5); urban (16); and rural (5). As incentive for study participation, facilities were offered credit toward CoC's Standard 4.7 Study of Quality (2016 Edition)¹² or credit for the number of survivors as accrued for Standard 9.1 Clinical Research Accrual Study (2020 Edition).⁴¹ On study completion, each facility received tailored feedback reports of their findings compared with findings aggregated across all study facilities to be used for identifying gaps in DS and management and opportunities for quality improvement. The investigation was performed after approval by the Centers for Disease Control Human Subjects Review Board (Protocol #7225.0), Westat's Institutional Review Board (Protocol #6282.07), and a local Human Investigations Committee, in accordance with an assurance filed with and approved by the Centers for Disease Control and Prevention. Informed consent was not needed since this analysis used data already collected in EHRs.

RESULTS

We abstracted data for 2,258 survivors with lung or ovarian cancer across 21 cancer treatment facilities. The primary DS tool used was the Distress Thermometer (61.5%), followed by the Patient Health Questionnaire (PHQ)-9 (11.5%), PHQ-4 (7.7%), PHQ-2 (3.8%), and other local instruments (15.4%). Characteristics of participating survivors are summarized in Table 1. Lung and ovarian cancer survivors differed significantly across several demographic characteristics. The majority of survivors were non-Hispanic White (77.2%), age 65 years or older at the time of diagnosis (60.3%), lived in urban areas (79.9%), had no history of mental health conditions (61.7%), and were insured by public (Medicare or Medicaid) insurance (69.4%). Approximately one third (34.1%) of survivors had stage IV disease, and 69% had former (42.2%) or current (26.8%) smoking histories.

DISCUSSION

This study identified disparities in the administration and receipt of DS and distress management at both the facility level and the survivor level. DS rates differed greatly depending on the facility where survivors received cancer treatment, and a higher percentage of survivors were screened at rural versus urban facilities. Among cancer survivors, we found disparities throughout the DS and management process, from screening to referral for additional psychosocial services.

The wide variation of DS rates (6%-91%) of lung and ovarian cancer survivors across cancer care facilities was unexpected and indicates that some facility protocols for DS did not include lung and/or ovarian cancer service lines. This can contribute to disparities in DS by cancer diagnosis if survivors are treated in facilities with DS protocols that do not include their diagnosis. At the time of the study, the CoC's main method of determining compliance with the DS standard was based on a facility's reporting of their policies and procedures. If DS protocols were in place and being followed, regardless of whether all cancers were included in the DS protocols, a facility is considered in compliance.⁴⁷ On the other hand, for facilities to ensure that they are providing the same level of psychosocial care to all cancer survivors, it is important for them to include all service lines in DS and management protocols. Other US studies, not focused on lung and ovarian cancer survivors, found higher rates of DS (62.7%-75.7%),^48-50 further supporting our assumption that facility DS protocols may be driving disparities. Institutional capacity, such as availability of psychosocial staff,⁵¹ may make such comprehensive protocols difficult to implement. A surprising finding was that cancer survivors treated in rural facilities were screened for distress at higher rates than those treated in urban facilities. Although this finding was unexpected because health and mental health disparities are routinely reported among rural cancer survivors,^52-55 it may be an indication of better balance between staff and patients and that progress is being made in addressing disparities in rural cancer survivorship.⁵⁶

Our study found that disparities in receipt of DS existed across demographic categories, most notably, race/ethnicity, cancer diagnosis, age at diagnosis, and cancer stage. Non-Hispanic White and non-Hispanic Black survivors were screened for distress at similar rates; however, Hispanic/Latino and Asian/Pacific Islander survivors were screened at rates lower than all other survivors. This is concerning given that Latino and Asian/Pacific Islander lung cancer survivors have previously reported a greater number of unmet supportive care needs than their White counterparts⁵⁷ and a systematic review found quality-of-life outcomes among Hispanic/Latino cancer survivors to be worse than any other racial/ethnic group.⁵⁸ Our findings that lung cancer survivors were screened at higher rates than ovarian cancer survivors could reflect that some CoC-accredited facilities focus screening efforts on the most common cancer diagnoses at their facilities. Our study also found that survivors with more advanced disease got screened at higher rates than those with an earlier disease stage. All survivors, regardless of cancer diagnosis or cancer stage, could benefit from DS and management since they are components of quality cancer care,^18-20 and psychosocial support has been associated with longer survival.²¹

An encouraging finding was that among survivors who screened positive for distress, nearly all (97%) received a psychosocial assessment. This is higher than those documented in other studies.^4,48,49,59 Consistent with the previous literature, this study found that the three most common reasons survivors reported feeling distressed were physical symptoms, emotional problems, and practical problems.^48,60 Although consistent with other literature,⁶¹ our finding that nearly a third of non-Hispanic Black survivors declined psychosocial support is concerning because Black cancer survivors experience higher distress^62,63 and have more unmet psychosocial needs than White cancer survivors.⁵⁸ It is not clear from our data why survivors decline follow-up support, although stigma around mental illness may contribute and has been found to be higher among people from racial and ethnic minority groups than those from majority groups.⁶⁴ Oncologist recommendations increase survivor uptake of psychosocial support,⁶⁵ and implicit bias^66-69 may contribute to fewer oncologist recommendations of psychosocial support to Black survivors. Relatedly, a study found that the perception of racism in one's health care provider increased the likelihood of delaying or forgoing necessary medical care.⁶⁹ Our study found that the professionals to whom cancer survivors were most often referred were oncology social workers, a large proportion (91%) of whom are White.⁷⁰ The lack of racial concordance between psychosocial staff and survivors may also contribute to the higher percentage of Black survivors declining follow-up support, given that studies have shown longstanding mistrust^71,72 in the medical system among many in the Black community.^73-76

Despite the CoC requirement to maintain DS documentation, our study found that facilities were not always able to document DS results or postassessment referrals. Other studies have also found documentation of DS and management to be lacking.^48,49,59 Tools, such as the OSWii, that capture the range and complexity of psychosocial interventions delivered in cancer care may improve documentation of psychosocial support recommended to and received by survivors.⁴²

Study limitations specific to data include that since EHR data were not collected for research purposes, analyses were limited by available data (eg, mental health history was missing in nearly 18% of EHRs reviewed), data collection varied by EHR system and facility, study participants were extremely heterogenous, and DS documentation was not standardized. We developed a data abstraction tool to standardize data from each facility's cancer registry database, including the manual abstraction of nonstandardized data fields. The abstraction tool included the OSWii,⁴² developed by oncology social work practitioners, to standardize how intervention data after the DS were collected. Second, our study only included a sample of CoC facilities who met the minimum number of lung and ovarian case requirements and who could support study procedures. The findings of DS processes and completion may not be generalizable to all CoC facilities, CoC facilities with smaller numbers of cancer survivors or lesser EHR capabilities, or non-CoC facilities; however, significant ongoing, intentional collaboration between the study investigators and CoC staff and leadership informed development of the study, analyses, reporting, and implementation of findings. Finally, although we captured a large number of cancer survivors overall and oversampled non-White survivors, our sample was not demographically representative of all cancer survivors, and we were limited in the comparisons that could be completed for the various distress-related patterns of care beyond non-Hispanic White and non-Hispanic Black survivors.

In conclusion, DS and management hold promise to improve the quality of life for cancer survivors. Our findings demonstrate that DS is performed variably among lung and ovarian cancer survivors and disparities exist. These results may be used to improve DS processes and enhance access to DS and appropriate psychosocial care for lung and ovarian cancer survivors. Collaborating with CoC enabled them to use these findings to improve processes for collecting DS data for accreditation purposes. This study illustrated that DS protocol reporting may be insufficient for CoC to determine compliance with DS standard and resulted in improvements to the data collection tool in the CoC prereview questionnaire⁷⁷ that captures how facilities are meeting this standard. Future studies could aim to understand the factors, including implicit bias and structural racism, contributing to refusal of psychosocial services that may help survivors manage their distress. Studies could also explore the intersectionality among race/ethnicity, rural/urban location, and socioeconomic status to further identify disparities in DS and management to ensure that all cancer survivors receive adequate psychosocial care.

AUTHOR CONTRIBUTIONS

Conception and design: Elizabeth A. Rohan, M. Shayne Gallaway, Grace C. Huang, Diane Ng, Jennifer E. Boehm, Karen Stachon

Administrative support: All authors

Provision of study materials or patients: Diane Ng, Karen Stachon

Collection and assembly of data: M. Shayne Gallaway, Diane Ng

Data analysis and interpretation: Elizabeth A. Rohan, M. Shayne Gallaway, Jennifer E. Boehm, Ruvini Samarasinha, Karen Stachon

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST