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Gynecol Oncol. Author manuscript; available in PMC 2023 Sep 1.
Published in final edited form as:
Gynecol Oncol. 2022 Sep; 166(3): 503–507.
Published online 2022 Jun 29. doi:10.1016/j.ygyno.2022.06.016
PMCID: PMC9678245
NIHMSID: NIHMS1847485
PMID: 35778291
Jaclyn A. Wall, MD,1 Kelsey Lipking, MD,2 Haller J. Smith, MD,1,3 Warner K. Huh, MD,1,3 Terri Salter, MSNA,3 and Margaret I. Liang, MD, MS1,3
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The publisher's final edited version of this article is available at Gynecol Oncol
Abstract
Objective:
Distress screening and management is a recommended component of oncology care. Our objective was to evaluate distress rate, sources, and compliance with psychosocial follow-up among ovarian cancer patients receiving chemotherapy.
Methods:
We reviewed patient distress surveys completed by ovarian cancer patients receiving chemotherapy from 10/2017–6/2019. Lay or nurse navigators conducted screening with the NCCN Distress Thermometer from 0 (none) to 10 (highest distress). A distress score ≥4 (moderate/severe) was considered a positive screen. A recommendation for psychosocial follow-up was automatically generated in the treatment care plan based upon a yes response to any depression-related concern, independent of distress score. Documentation of referral to a mental health professional or social worker for counseling was considered compliant with psychosocial follow-up. We performed descriptive statistics and bivariate analyses.
Results:
97/211 (46%) ovarian cancer patients screened positive for distress. Average score was 6.1 for those who screened positive and 3.3 for the entire cohort (range 0–10). Unmarried status (p<0.01) was associated with positive screen, whereas non-white race (p=0.26) and recurrent disease (p=0.21) were not. Median age was older for patients with a positive distress screen (p<0.01). Among screened patients, the most frequent sources of distress were: cognitive/physical (87%), psychosocial (62%), practical (84%), and family concerns (40%). Of 50 patients recommended to have psychosocial referral, 4 (8%) patients had documented psychiatric follow-up and 19 (38%) patients had documented psychosocial counseling by a social worker.
Conclusions:
Nearly half of ovarian cancer patients screened positive for moderate/severe distress. Cancer/treatment-related cognitive/physical symptoms were the most frequent sources. Improved methods of symptom monitoring and management during treatment and resources to address psychosocial concerns are needed to improve distress management of ovarian cancer patients.
1. Introduction
Oncology care is associated with high rates of distress. Distress is defined by the National Comprehensive Cancer Network (NCNN) as “a multifactorial unpleasant experience of psychological, social, and/or physical nature that may interfere with the ability to cope affectively with cancer, its physical symptoms, and its treatment (1).” Distress ranges in severity from mild symptoms such as occasional sadness, vulnerability, and fear to more debilitating symptoms of depression, anxiety, and social isolation. Specific domains of distress in cancer patients include cognitive or psychosocial concerns (i.e., fear of recurrence) (2), family-related concerns (i.e., burden of care on family members) (2), physical concerns (i.e., pain, fatigue, sexual dysfunction), and practical concerns. If left untreated, these symptoms have the potential to further progress into crisis.; for example, financial distress due to out-of-pocket costs and/or decreased income-earning ability is estimated to affect nearly half of gynecologic cancer patients (3). In addition, gynecologic cancer patients who are unemployed or have no or Medicaid insurance were more likely to experience distress thermometer scores ≥5 (4). Due to its high prevalence in cancer patients, the NCCN has recommended that all cancer patients undergo screening for distress, ideally at every visit, but particularly in times of transition such as at diagnosis, when initiating therapy, or at the time of recurrence (1). The NCCN Distress Thermometer (Figure 2) is a validated instrument that is recommended for distress screening (5, 6).
Figure 2:
National Comprehensive Cancer Network (NCCN) Distress Thermometer
Rates of distress in gynecologic malignancies have been estimated between 20–35%; however, rates in ovarian cancer patients specifically have not been well described (4). The clinical course of ovarian cancer is often characterized by an advanced stage at diagnosis, frequent recurrences, and longer periods on therapy due to the expanding use of maintenance therapies. These features may contribute to unique or prolonged sources of distress among ovarian cancer patients. Previous studies have suggested that women with ovarian cancer are twice as likely to experience depression and four times as likely to experience anxiety than women without a cancer diagnosis (7) and multiple components of their cancer care may contribute to distress (8). As there are approximately twenty-thousand new cases of ovarian cancer annually (9) and evolving therapies that have resulted in the potential for improved longevity in these patients, it is imperative to address sources of distress that could significantly impact ovarian cancer patients’ quality of life. Our aim was to evaluate the frequency of distress, characterize specific sources of distress, and determine compliance with recommended psychosocial follow up among ovarian cancer patients undergoing systemic therapy who were screened with the NCCN Distress Thermometer.
2. Methods
2.1. Patient population
For this retrospective review, we included all consecutive ovarian cancer patients who were actively receiving systemic therapy at our gynecologic oncology clinic and completed distress screening between June 2017 and October 2019 at our single, tertiary care, academic medical center. Patients were screened face to face or on the phone as part of routine clinical care by our lay or nurse navigators. Navigators would read the questions to the patients in either method and enter the results into Carevive, which is a cancer care management software that is integrated with our electronic medical record. This study was approved by our institution’s Institutional Review Board and there was a waiver of informed consent.
2.2. Distress screening
Patients were presented with an image of the NCCN Distress Thermometer by our lay or nurse navigators and asked to indicate their distress level from 0 (no distress) to 10 (worst possible distress). Based on NCCN guidelines, a distress score ≥4 (indicative of moderate/severe distress) was considered a positive screen (1). Patients were then asked to review a Problem List of potential areas of concern “in the past week, including today,” which included practical problems, family problems, emotional problems, spiritual/religious concerns, and/or physical concerns. A recommendation for psychosocial follow-up was automatically generated by Carevive in the treatment care plan if a patient responded “yes” to any depression-related question, consistent with NCCN guidelines (10) (these specifically included feelings of grief, abuse/neglect, sadness/depression, trouble coping, feelings of hopelessness, and/or thoughts of suicide). This recommendation was independent of the total distress score and was implemented consistently throughout our screening and follow-up process. Referrals were communicated directly to patients and facilitated by our patient navigators or with the assistance of our social worker. We considered 1) documentation of a referral to a mental health professional, 2) documentation of a visit with our social worker specifically for psychosocial counseling, or 3) a note by an outside mental health professional, compliant with the recommendation for psychosocial follow-up.
2.3. Statistical analysis
We performed descriptive statistics calculating frequency, percentage, median, interquartile range, minimum, and maximum. Bivariate analyses using Chi-square analysis and Wilcoxon-Mann-Whitney test were calculated using STATA 17 (College Station, TX) software. A p-value <0.05 was considered statistically significant.
3. Results
Between October 2017 and June 2019, 211 ovarian cancer patients undergoing systemic therapy at our institution completed the distress screening survey. Patient characteristics are summarized in Table 1. The median age was 63 (range 16–92) years old and the majority of patients white (80%) and married (59%). There were similar numbers of patients undergoing treatment for primary versus recurrent disease (54% vs. 46%, respectively).
Table 1:
Patient characteristics (N=211)
| Characteristic | Median (IQR, min-max) N (%) |
|---|---|
| Age | 63 (55–70,16–92) |
| Race | |
| White | 168 (80) |
| Black | 38 (18) |
| Asian | 3 (1) |
| Hispanic | 1 (0.4) |
| Unknown | 1 (0.4) |
| Marital status | |
| Married | 125 (59) |
| Single | 131 (15) |
| Divorced | 30 (14) |
| Widowed | 19 (9) |
| Separated | 5 (2) |
| Unknown | 1 (0.4) |
| Disease status | |
| Primary diagnosis | 114 (54) |
| Recurrent disease | 97 (46) |
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Of the 211 ovarian cancer patients screened, 97 (46%) screened positive for moderate to severe distress (score ≥4), which included 56 (27%) patients who had moderate distress and 41 (19%) patients who had severe distress (Table 2). No or mild distress was reported by 110 (52%) of patients. The average distress score for the entire cohort was 3.3 (median 3, range 0–10). For patients reporting any level of distress (i.e., patients with distress score ≥1), the average score was 6.1 (median 5). Sources of patient distress often spanned several domains. Overall, the most common sources of distress were cognitive or physical (87%), practical (84%), and psychosocial (62%). Family concerns were also described by 40% of patients (Table 2).
Table 2:
Ovarian cancer patient distress scores and sources of distress (N=211)
| Distress Screening Results | Median (IQR, min-max) N (%) |
|---|---|
| NCCN Distress Score* | |
| Mild (1–3) | 110 (52) |
| Moderate (4–6) | 56 (27) |
| Severe (7–10) | 41 (19) |
| No response | 4 (2) |
| Distress Score | 3 (1–6, 0–10) |
| Distress Score of Positive Screens (N=97)† | 6 (5–8, 4–10) |
| Sources of Distress Among All Screened Patients (N=207)‡ | |
| Cognitive/Physical | 180 (87) |
| Fatigue | 59 (29) |
| Nausea | 58 (28) |
| Forgetfulness | 58 (28) |
| Difficulty concentrating | 46 (22) |
| Practical | 173 (84) |
| Cost of care | 26 (13) |
| Ability to work/attend school | 15 (7) |
| Perform activities of daily living | 12 (6) |
| Psychosocial/Emotional | 128 (62) |
| Anxiety | 38 (18) |
| Sadness or depression | 33 (16) |
| Fear of recurrence | 25 (12) |
| Loneliness | 10 (5) |
| Family | 82 (40) |
| Talking to children about cancer | 18 (9) |
| Resources for caregivers | 9 (4) |
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*NCCN distress score as reported by patient on NCCN distress thermometer
†Median score of patients with distress screens at a score of 4 or greater
‡Multiple yes responses were permitted within the same category and patients could site sources of distress in multiple categories; therefore, percentages do not equal 100.
The median age for those with a positive distress screen was 70 years and 55 years for those with a negative distress screen (Table 3, p<0.01). Marital status was also associated with distress as unmarried patients (single, divorced, or separated) had a higher frequency of a positive distress screen (p<0.01). There were no differences in screening positive for distress based on race or whether patients were being treated for primary or recurrent disease.
Table 3:
Factors associated with a positive distress screen among screened ovarian cancer patients (N=207)
| Factor | Positive Distress Screen Median (IQR) N (%) | Negative Distress Screen Median (IQR) N (%) | p-value |
|---|---|---|---|
| Age | 70 (66–76) | 55.5 (49–60) | <0.01 |
| Race | |||
| White | 75 (36) | 91 (43) | 0.26 |
| Non-white | 22 (10) | 19 (9) | |
| Marital status | |||
| Married | 45 (22) | 77 (37) | |
| Not married* | 51 (25) | 33 (16) | <0.01 |
| Disease status | |||
| Primary | 57 (27) | 55 (26) | |
| Recurrent | 40 (19) | 55 (26) | 0.21 |
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*Not married included single, widowed, divorced, or separated. One marital status was unknown and was not included in the analysis.
An automated recommendation for psychosocial follow up was recommended through the Carevive platform if a patient answered affirmatively to any question related to depression, regardless if the patient had a positive distress screen. Of the 211 patients screened, 161 (76%) patients were not recommended and 50 (24%) patients were recommended psychosocial follow up (Figure 1). Among the 50 patients who were recommended psychosocial follow up, 23 (46%) had appropriate follow up (referral to mental health professional, social worker for psychosocial counseling) documented (Figure 1). Of the 50 patients who were recommended and received psychosocial follow up, 19 (38%) patients received this from a clinical social worker in our clinic and 4 (8%) patients had documented follow up with a psychiatrist outside of our clinic.
Figure 1:
Patients receiving recommended psychosocial follow up
*Psychosocial follow up was recommended if a “yes” response to any depression related question in the NCCN distress screening survey, regardless of patient’s distress score † Follow up was determined by documentation of referral to a mental health professional or social worker specifically for psychosocial counseling
4. Discussion
Screening for distress is an increasingly recognized and prevalent component of comprehensive cancer care (11). We found that nearly half (46%) of ovarian cancer patients receiving systemic therapy screened positive for moderate or severe distress using the NCCN Distress Thermometer. This is similar to rates of distress reported among diverse groups of cancer patients, which range between 40–50% (12, 13); previous studies in gynecologic oncology patients have ranged from 20–35% (4) to as high as 60% (11). We postulate these differences could be attributable to our inclusion of only ovarian cancer patients; additionally, we used a cutoff score of ≥4, consistent with NCCN recommendations, whereas others have used higher thresholds (i.e., score ≥5). Further, geographic diversity may contribute as well.
Regardless of distress level, screened patients reported multiple sources of distress. In our cohort, physical and cognitive issues were cited by 87% of screened patients (most notably, fatigue, nausea, and forgetfulness). These symptoms have been commonly reported in studies of gynecologic, especially ovarian, cancer patients (13–16). Small pilot studies have examined behavioral and lifestyle interventions and their effect on chronic fatigue in patients with gynecologic cancers (14, 15). Practical concerns, such as the cost of care, were reported by 84% of the screened patients. Psychosocial issues, such as feelings of sadness or depression, anxiety, loneliness, difficulty adjusting to illness, or fear of recurrence, were reported among 62% of screened patients. These are frequently noted concerns among ovarian cancer patients in general (7, 16). Rates of depression and anxiety in ovarian cancer patients have been estimated between 15–30 percent, and depressive symptoms tend to resolve within the few months completing chemotherapy, while symptoms of anxiety may worsen (17, 18). Importantly, though distress and depression or anxiety are not equivalent, patients reporting mental health problems may be more likely to report higher levels of distress (19).
In our study, patients with positive distress screens were older and had a higher frequency of non-married status compared to those with negative distress screens, although there was no difference in race between groups. Risk factors associated with increased rates of distress across various cancer types include the presence of additional medical problems (20), poor social support (21), financial instability (22), and marital status (non-married) (23). In previous studies, race has been associated with cancer-related distress with non-white (specifically, Black) cancer survivors reporting higher levels of emotional distress (24) (25). Regardless of marital status or family structure, patients’ caregivers face challenges in dealing with the uncertainly that often accompanies navigating a cancer diagnosis and treatment(26); however, this information was not collected in our study. While cancer patients may report distress related to fear of recurrence before a recurrence occurs (27), we did not find an association between recurrent disease and positive distress screen when compared to patients with primary disease. Women with primary and recurrent disease had similar rates of distress in our study, similar to findings in other studies (28). Interestingly, it has been shown previously that distress levels in ovarian cancer patients are high following their initial surgery (29), largely due to the uncertainly in prognosis, next steps, and potential disease progression.
Approximately half of the patients in our study for whom psychosocial follow-up was recommended received it. Our clinic recently implemented universal screening for depression using the Patient Health Questionnaire (PHQ-2 with reflex PHQ-9) screening tool with referral to a trained psycho-oncology counselor for positive screens, which will also allow for more systematic identification and consistent follow up of patients with mental health needs. Importantly, patients were not automatically referred for symptoms of anxiety in the absence of other depressive symptoms; although, with the expansion of resources and personnel, this could be added to the screening and referral system in the future.
The main strength of our study is that we utilized a validated screening tool to systematically assess patient distress (30), which was administered as part of routine care to ovarian cancer patients by trained personnel. Our study has several limitations. As we conducted this study at a single institution, our findings may not be completely reflective of patients in other health systems or geographic regions. For instance, our gynecologic oncology practice utilizes lay and nurse navigators to conduct distress screening with specific referral workflows to social work or financial counseling as indicated. However, moving forward, patient navigators may be increasingly able to monitor and give advice regarding supportive care needs; other work has shown this to be effective in facilitating patient needs particularly in high risk patients (31). Given the retrospective nature, we may not have had complete information on patients accessing mental health professionals outside of our health system, which could underestimate the rate of recommend psychiatric follow up in our patient population. The recent addition of systematic depression screening and the availability of psychosocial counselors specific for oncology patients at our institution will also improve care delivery in the future. Additionally, while we did not investigate if any disparities existed in referral patterns for distressed or depressed patients, this is an important future direction of study as we continue to implement screening and referral practices in our patients. We had 18% Black patients in our cohort, which is lower than the resident population distribution of Alabama in 2021 which is 27% Black (32). In addition to the small sample size, this could limit our findings evaluating the association between race and positive distress screens.
Our study found that rates of moderate to severe distress affect nearly 1 in 2 ovarian cancer patients who are on active therapy and provides insight to the most frequent sources of distress. In addition to routine distress screening, the use of systematic monitoring of patient symptoms remotely between visits, especially for physical and cognitive symptoms, has been shown to improve symptom management, quality of life, and overall survival (27). Furthermore, implementation of more specific screening for practical (i.e., Comprehensive Score for Financial Toxicity) and psychosocial concerns (PHQ-2 and PHQ-9 for depression) with a clear tracking and referral system may augment current efforts to provide comprehensive support for ovarian cancer patients during and after treatment.
Funding Support:
Margaret I. Liang was supported by a National Institute of Child Health and Human Development Women’s Reproductive Health Research Career Development K-12 Grant (5K12HD001258).
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