Abstract
Objectives:
To (1) describe the prevalence of work- or school-related distress among patients with cancer and (2) compare overall distress among those impacted at work or school to overall distress among those not impacted at work or school.
Design:
Retrospective chart review.
Participants:
All patients visiting the study site March 2016–December 2020 who completed the NCCN Distress Thermometer and Problem List.
Methods:
Descriptive statistics examined work- or school-related distress across patient characteristics and compared mean Distress Thermometer scores between patients with and without work- or school-related distress.
Findings:
Among 1,760 unique patients, 7.5% reported work- or school-related distress at one or more visits. Rates were highest among patients seen for neurological (14.1%), skin (10.6%), and gastrointestinal (9.2%) cancers. Those reporting work- or school-related distress had higher overall distress scores (mean=4.76; SD=2.52) than others (mean=3.37; SD=2.92) (g=−0.482; t=−5.327, p<0.001).
Conclusions:
Although the prevalence of work- or school-related distress was low in this sample, the magnitude of this distress emphasizes the importance of having effective resources available for patients with cancer who experience work- or school-related problems.
Implications:
More research is needed to understand how well distress screening processes identify and support patients with work- or school-related problems.
Keywords: distress thermometer, employment, school
INTRODUCTION
Challenges engaging at work and school are widely recognized among people with cancer,1,2 and existing interventions may not adequately address those challenges.3 The National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List is a validated and widely used screening tool designed to identify the level and source of cancer patients’ distress.4,5 Sources of distress include work or school issues, in addition to other specific areas of physical and psychosocial need. As part of an intervention development process, we sought to explore the extent of work- and school-related distress among patients with cancer in our rural cancer center to inform the staffing and resources required to intervene when patients experience work- and school-related distress.
We therefore aim to 1) describe the degree to which patients at our facility report work- or school-related distress across sociodemographic and disease-related factors and (2) compare the magnitude of overall distress reported by those impacted at work or school to overall distress among those not impacted at work or school.
METHODS
This study was reviewed and designated exempt by the Dartmouth-Hitchcock Health Human Research Protection Program (study #02000975). Informed consent requirements were waived for our secondary analysis of a limited dataset.
Setting
We conducted a retrospective chart review at a rural, academic, National Cancer Institute (NCI)-designated comprehensive cancer center in the northeast United States. The patient population at this cancer center is primarily white. Due to the cancer center’s large catchment area, the patient population is socioeconomically diverse.
Participants
Participants included all patients with cancer attending healthcare visits at the study site between March 2016 and December 2020 who completed the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List.6
Data
We collected the following deidentified patient-level data through the electronic health record’s automated reporting system (Epic): unique patient identifier, unique visit identifier, patient age at time of visit, patient sex, month of visit, clinician, department, disease site, cancer stage, NCCN Distress Thermometer rating (0 “no distress” to 10 “extreme distress”), and binary indicators for patient-reported presence/absence of each of the 39 NCCN Problem List items.
The primary outcome was the single-item binary indicator of work- or school-related distress reported in the NCCN Problem List. The Distress Thermometer and Problem List measure lists “work/school” as one source of distress and, therefore, we are unable to distinguish between people who were distressed regarding their role as a worker versus a student. Distress Thermometer score (0–10) was the secondary outcome.
Analysis
We calculated frequencies to examine work- and school-related distress across sociodemographic and disease-related characteristics. Descriptive statistics compared mean Distress Thermometer scores between patients reporting work- or school-related distress and those not reporting work- or school-related distress. Where descriptive statistics suggested clinically significant differences in mean distress scores between those reporting work/school distress and those not reporting work/school distress, we conducted post hoc t-tests to assess statistical significance and calculated Hedges’ G effect size with further bias correction for small samples.7 To target a working-age population, we conducted subgroup analyses including adult patients ages 18–67 years.8 We used Stata 13 software for all statistical analyses.
RESULTS
Participant and visit characteristics
We reviewed NCCN Distress Thermometer and Problem List data from 1,760 unique patients seen in 1,871 visits. Table 1 presents demographic details.
Table 1.
Participant characteristics (all visits)
| 18–67 years | 68+ years | All ages | ||||
|---|---|---|---|---|---|---|
| Overall (n=1041) | Visits with work/school distress reported (n=113) | Overall (n=829) | Visits with work/school distress reported (n=21) | Overall (n=1871) | Visits with work/school distress reported (n=131) | |
| Mean distress score (SD) | 3.89 (2.95) | 4.91 (2.43) | 2.94 (2.79) | 4.00 (2.89) | 3.47 (2.92) | 4.76 (2.52) |
| Mean age (SD) | 56.85 (8.62) | 54.06 (9.33) | 74.97 (5.74) | 72.43 (4.70) | 64.86 (11.76) | 56.94 (11.02) |
| Overall % (n) | % of visits with work/school distress reported (n) | Overall % (n) | % of visits with work/school distress reported (n) | Overall % (n) | % of visits with work/school distress reported (n) | |
| Sex | ||||||
| Female | 56.3% (586) | 51.3% (58) | 48.1% (399) | 47.6% (10) | 52.7% (986) | 50.8% (68) |
| Male | 43.7% (455) | 48.7% (55) | 51.9% (430) | 52.4% (11) | 47.3% (885) | 49.3% (66) |
| Disease site/type | ||||||
| Breast | 24.4% (254) | 22.1% (25) | 18.8% (156) | 28.6% (6) | 21.9% (410) | 23.1% (31) |
| Endocrine | 0.5% (5) | -- | 0.5% (4) | -- | 0.5% (9) | -- |
| Gastrointestinal | 28.5% (297) | 38.1% (43) | 27.4% (227) | 23.8% (5) | 28.0% (524) | 35.8% (48) |
| Gynecologic | 1.0% (10) | -- | 1.6% (13) | -- | 1.2% (23) | -- |
| Head/neck | 2.9% (30) | 0.9% (1) | 2.2% (18) | 4.8% (1) | 2.6% (49) | 1.5% (2) |
| Hematologic | 5.8% (60) | 4.4% (5) | 7.8% (65) | 4.8% (1) | 6.7% (125) | 4.5% (6) |
| Neurological | 5.8% (60) | 8.0% (9) | 3.9% (32) | 19.1% (4) | 4.9% (92) | 9.7% (13) |
| Skin | 2.1% (22) | 3.5% (4) | 3.0% (25) | 4.8% (1) | 2.5% (47) | 3.7% (5) |
| Thoracic | 14.0% (146) | 13.3% (15) | 13.6% (113) | 14.3% (3) | 13.8% (259) | 13.4% (18) |
| Urological | 7.6% (79) | 7.1% (8) | 13.6% (113) | -- | 10.3% (192) | 6.0% (8) |
| Other, non-malignant | 5.1% (53) | 1.8% (2) | 4.5% (37) | -- | 4.8% (90) | 1.5% (2) |
| Other, unspecified | 2.4% (25) | 0.9% (1) | 3.1% (26) | -- | 2.7% (51) | 0.8% (1) |
| Clinician type | ||||||
| Surgical oncologist | 12.1% (126) | 15.9% (18) | 8.9% (74) | 14.3% (3) | 10.7% (200) | 15.7% (21) |
| Radiation oncologist | 17.2% (179) | 8.0% (9) | 19.9% (165) | 9.5% (2) | 18.4% (345) | 8.2% (11) |
| Medical oncologist | 48.9% (509) | 60.2% (68) | 52.0% (431) | 57.1% (12) | 50.2% (940) | 59.7% (80) |
| Hematologist oncologist | 6.0% (62) | 3.5% (4) | 6.4% (53) | -- | 6.2% (115) | 3.0% (4) |
| Other | 15.9% (165) | 12.4% (14) | 12.8% (106) | 19.1% (4) | 14.5% (271) | 13.4% (18) |
| Cancer stage | ||||||
| Stage 0 | 1.0% (3) | 3.0% (1) | 2.3% (6) | -- | 1.6% (9) | 2.6% (1) |
| Stage 1 | 21.5% (68) | 18.2% (6) | 25.7% (68) | 20.0% (1) | 23.4% (136) | 18.4% (7) |
| Stage 2 | 23.3% (74) | 15.2% (5) | 30.9% (82) | 20.0% (1) | 26.8% (156) | 15.8% (6) |
| Stage 3 | 23.0% (73) | 33.3% (11) | 17.4% (46) | 20.0% (1) | 20.5% (119) | 31.6% (12) |
| Stage 4 | 31.2% (99) | 30.3% (10) | 23.8% (63) | 40.0% (2) | 27.8% (162) | 31.6% (12) |
| Unknown/Not reported | (724) | (80) | (564) | (16) | (1289) | (96) |
Prevalence of work- and school-related distress
7.2% (134/1,871) of all Distress Thermometer and Problem List responses indicated work- or school-related distress. Among unique patients, 7.5% (132/1,760) reported work- or school-related distress at a minimum of one visit. Rates of work- or school-related distress were highest among patients seen for neurological (14.1%; 13/92 reports), skin (10.6%; 5/47 reports), and gastrointestinal (9.2%; 48/524 reports) cancers (see Figure 1).
Figure 1.
Prevalence of work- or school-related distress across cancer types
Among working-age patients (ages 18–67), 10.9% (113/1,041) of Distress Thermometer and Problem List responses indicated work- or school-related distress. 11.4% (112/984) of unique working-age patients reported work- or school-related distress at least once. In this working-age subgroup, reports of work- or school-related distress were most common among patients seen for skin (18.2%; 4/22 reports), neurological (15.0%; 9/60 reports), and gastrointestinal (14.5%; 43/297 reports) cancers.
On average, there were 2.3 reports of work- or school-related distress per month (SD 2.1) and 26.8 reports per year (SD 17.1).
Magnitude of overall distress
Among patients of all ages, those reporting work/school as a source of distress had significantly higher distress scores than those who did not report work/school as a source (g=−0.482, 95% CI: −0.661, −0.304; t=−5.327, p<0.001). The mean distress score (0 “no distress” to 10 “extreme distress”) for those reporting work/school as a source of distress was 4.76 (SD 2.52; n=131), while those who did not report work/school as a source of distress had a mean distress score of 3.37 (SD 2.92; n=1702). The mean distress score for the overall sample was 3.47 (SD 2.92; n=1833). Those patients with work/school distress reported a mean of 10.16 total sources of distress (SD 5.90; n=134). Those without work/school distress reported a mean of 5.67 sources of distress (SD 4.90; n=1737).
Among working-age patients (18–67 years), those reporting work/school as a source of distress also had higher distress scores than those who did not report work/school as a source (g=−0.390, 95% CI: −0.590, −0.192; t=−3.875, p=0.001). The mean distress score for working-age patients reporting work/school as a source of distress was 4.91 (SD 2.43; n=110). Working-age patients who did not report work/school as a source of distress had a mean distress score of 3.77 (SD 2.98; n=912). The mean distress score for the overall working-age sample was 3.89 (SD 2.95; n=1022). On average, working-age patients with work/school distress reported 10.22 sources of distress (SD 5.97; n=113), while those without work/school distress reported a mean of 6.10 sources (SD 5.00; n=928).
DISCUSSION
In order to develop interventions that optimize employment goals of cancer survivors, it is important to assess how many people struggle with work or school and to what extent they struggle. In our subsample of working-aged adults, 11.4% of patients reported work or school as a source of distress. This number was lower than anticipated, as the National Coalition for Cancer Survivorship’s 2021 State of Survivorship Study found that 43% of cancer survivors experienced cancer-related impacts on work status or environment.9 This raises an interesting question regarding the best way to identify patients who may be interested in interventions addressing work or school challenges. Using the Distress Thermometer screening has advantages in that it is widely used in many oncology practices, so it would be logical to build a referral system to employment interventions for people who endorse work/school as a source of distress. It will be important, however, to better understand if “distress” is a construct that will resonate with people experiencing challenges at work or school.
Highlighting the importance of identifying and intervening to support patients with work- or school-related distress, overall distress scores were significantly higher among this group (mean 4.76; SD 2.52) than among patients who did not report work or school-related distress (mean 3.37; SD 2.92). NCCN distress management guidelines recommend referring patients with Distress Thermometer scores at or exceeding 4 to additional supportive resources that address the sources of distress reported in the Problem List.10 Availability of resources to support patients with work- and school-related distress is, therefore, critically important to meet this need.3 Qualitative research is needed to explore what aspects of work or school contribute to distress among patients with cancer.
Strengths and limitations
Strengths of this study were its inclusion of approximately 5 years of distress screening data from an NCI-designated comprehensive cancer center and its use of the validated and widely-studied NCCN Distress Thermometer and Problem List screening measure. However, the study is limited by its convenience sampling approach, introducing the potential for selection bias because patients were not systematically screened for distress during the study period.
A recent audit of screening activity at the study site found that distress screening is conducted with approximately 20% of patients. This limited screening activity also contributed to low sample sizes in some subgroups, limiting our ability to test comparisons across all variables of interest and potentially limiting our power to detect differences and associations. In 2012, the American College of Surgeons’ Commission on Cancer announced a requirement for accredited cancer centers to screen all patients for distress;11 a 2015 nationally representative study found that 28.5% of patients were not screened according to cancer center protocol. This lack of universal distress screening may lead us to underestimate the true prevalence and magnitude of distress among patients with cancer.12 Additionally, the timing of distress screening could influence its usefulness in identifying people who may benefit from services to maximize employment. For example, if distress screening primarily occurs around diagnosis, it may underdetect work-related distress experienced after treatment completion.
Conclusion/Implications
In this single-site sample, patients with cancer infrequently reported work- or school-related distress. However, the magnitude of distress among patients reporting work- or school-related problems was substantial, exceeding the NCCN-recommended threshold for intervention. This emphasizes the importance of identifying and offering resources to support patients with cancer endorsing work- and school-related concerns.
Funding
The authors acknowledge research support from Friends of the Norris Cotton Cancer Center at Dartmouth and its NCI Cancer Center Support Grant (CCSG) P30 CA023108.
Footnotes
Competing interests
The authors report that they have no relevant financial or non-financial competing interests.
Data availability statement
Due to the nature of the secondary data analysis in this study, participants did not agree for their data to be shared publicly, so supporting data are not available.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Due to the nature of the secondary data analysis in this study, participants did not agree for their data to be shared publicly, so supporting data are not available.