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Keywords:

  • cancer;
  • oncology;
  • distress;
  • distress screening;
  • psychosocial oncology

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Objective: The 2008 Institute of Medicine's Report, Cancer Care for the Whole Patient (IOM, 2008), recommends screening cancer patients for distress. Cancer programs throughout the United States are struggling to achieve this standard. The IOM report indicates that only 14% of 1000 randomly selected American Society of Clinical Oncology (ASCO) members and eight of 15 National Comprehensive Cancer Network (NCCN) centers reported screening for distress in at least some of their patients [J Natl Compr Cancer Netw 2007;5:99–103]. Without adequate screening, distress often goes unnoticed by cancer professionals and there is little information about the prevalence of distress. The main objective of this article is to present data from 1281 distress screenings completed by patients treated within a community cancer center. Specifically, this article reports the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers by cancer patients.

Method: Medical and radiation oncology patients completed a distress screener before their first physician appointment. The screening instrument included the Distress Thermometer, a symptom checklist, and a list of psychosocial providers that the patient could request to meet.

Results: Thirty-two percent of this sample rated distress above the threshold level. Worry was the most common problem endorsed followed by financial issues. Emotional concerns were endorsed by 59% of the sample. The cancer dietitian was the psychosocial professional most frequently requested by patients.

Conclusion: Distress screening can be accomplished within a community cancer center but the provision of psychosocial services is difficult given the high volume of need. Copyright © 2011 John Wiley & Sons, Ltd.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

The stress associated with a diagnosis of cancer has been shown to induce considerable psychological morbidity, with 25–50% of all cancer patients indicating significant levels of distress 1–3. Two sub-groups of patients exist within the 25–50% of individuals who evidence high distress: those who meet the criteria for psychiatric illnesses such as major depression or adjustment disorders (up to 25% of all patients), and patients who report distress levels that do not meet criteria for a psychiatric diagnosis but interfere significantly with quality of life and functional status (15–20% of all patients) 1–3. The intensity of distress levels may increase with recurrence 1–3, advanced disease 3, 4, and increased pain and disability, which would suggest that cancer patients' distress levels may fluctuate as they progress through cancer treatment 1–3, 5. This prevalence data comes from a limited number of studies and National Cancer Institute designated comprehensive cancer center patient samples. Therefore, this data may not represent patient populations found in community cancer center settings.

In spite of the prevalence of distress among cancer patients, distress often goes undetected by oncology professionals 2, 6, 7. The lack of recognition and resulting under-treatment of distress has been shown to contribute to a number of negative consequences: increased suffering 7, decreased quality of life for both patients and family members 8, 9, reduced compliance with medical treatment 10, 11, longer hospitalizations 12, and the possibility of decreased survival odds 11, 13–15. Low detection rates are attributable to several factors, including lack of training among oncologists and nurses to detect distress 16–18, a lack of physician training in discussing emotional issues 19, and limitations in the time for allotted patient visits, which do not allow for distress detection 1. The under-detection and subsequent under-treatment of distress are particularly concerning when considering the high degree of efficacy of psychological interventions in decreasing distress 20, enhancing quality of life 21, 22 supporting treatment compliance 22 and managing pain 23, 24.

The National Comprehensive Cancer Network (NCCN) 25, 26 issued a consensus statement recommending the development of improved screening mechanisms to enhance the detection and management of distress in oncology patients and to establish distress screening as a standard of care within oncology health services delivery. This consensus statement was subsequently endorsed by the American Psychosocial Oncology Society (APOS) in 2000 27. APOS augmented the NCCN guidelines by recommending that screening tools be easy to administer, score, and interpret, and be brief and non-stigmatizing for the patient population 25–28. In 2008, the Institute of Medicine's Report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs29, underscored the NCCN and APOS recommendations to establish a screening mechanism to identify psychosocial needs in cancer patients. In addition, the Institute of Medicine report advanced the guidelines for the detection and management of distress by recommending the incorporation of psychosocial services within oncology as a national standard of care to be implemented across all types of cancer treatment settings.

Although screening and detection for distress may appear simple, cancer programs throughout the United States are struggling to achieve this standard. When 1000 randomly selected members of the American Society of Clinical Oncology (ASCO) were surveyed in 2006, only 32% of respondents reported being aware of the NCCN psychosocial screening guidelines and a mere 14% reported they were performing distress screening using a standardized tool 30. In addition, one-third of this sample reported they did not have any mechanism for distress screening. These data are further supported by a NCCN study of screening behaviors that indicated only eight of 15 NCCN member institutions routinely screen for distress in at least some of their patients 31.

The paucity of institutions and oncology practices that screen for distress might lead one to assume there is a lack of screening instruments that meet the NCCN and APOS criteria. This is not the case; developed and piloted by Roth et al. 32, the Distress Thermometer (DT) is endorsed by the NCCN Distress Practice Guidelines panel 32, 33. The DT consists of a single item asking patients to rate their distress using a scale with scores ranging from 0 (‘no distress’) to 10 (‘extreme distress’). The NCCN Clinical Practice Guidelines for Distress Management 25 added a brief problem checklist to the DT to assist in identifying the source of the patient's distress. The DT is a robust and accepted instrument for assessing distress, which has been validated through comparison with more comprehensive and lengthy instruments. The DT has been shown to have sensitivity ratings ranging from 0.65 to 0.77 and specificity ratings from 0.68 to 0.78 when compared with the Hospital Anxiety and Depression Scale 33, 34and sensitivity and specificity ratings both of 0.70 relative to the Brief Symptom Inventory short form (BSI-18) 34. When combined with the problem checklist, the DT satisfies the APOS guidelines for ease in administration, scoring, and interpretation.

Recommendations for distress screening have been in place for over 10 years, but cancer treatment facilities' difficulty in meeting these recommendations leaves us with little information about the prevalence of distress outside the NCI-designated Comprehensive Cancer Centers. The paucity of data regarding distress intensity and sources of distress for cancer patients inhibits the development of clinical programs to reduce distress. This article presents data from 1281 distress screenings completed by patients treated within a community cancer center in Denver, CO. Specifically, this article reports the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Participants

Participants included 1281 cancer patients who completed a distress screening instrument at Exempla Saint Joseph Hospital Cancer Center (ESJH CC) in Denver, CO between January and September of 2009. The participants were (1) over 18 years old, (2) diagnosed with a cancer, (3) able to read Standard English (i.e. the screening instrument), and (4) scheduled for an outpatient appointment within the ESJH CC departments of medical oncology or radiation oncology. Institutional Review Board approval for publishing this clinical data was provided through an expedited review.

Procedure

Medical and radiation oncology patients were asked to complete a paper version the distress screening instrument prior to their first outpatient appointment with their physician. Medical oncology patients were screened at all subsequent appointments and radiation oncology patients were screened one time per week during radiation treatments. However, only the data from the initial screening was used for this project. The distress screeners were given to patients in the waiting room and collected by a member of the health-care team.

Measures

The single page screening instrument included the DT, a problem checklist, and a section in which patients could request to be contacted by specific psychosocial providers (Figure 1). Given that this was a clinical screening instrument the only demographic variables collected were self-reported cancer diagnosis and date of birth.

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Figure 1. We care about you and want to help with your social, financial, and emotional needs. Please tell us how you are doing today by completing this form

Download figure to PowerPoint

The DT is a single-item, self-report measure of distress 24. The DT measures distress levels using a visual analog scale aligned vertically and resembling a thermometer. It has an 11-point range with endpoints labeled ‘no distress’ (0) and ‘extreme distress’ (10). Patients were instructed to circle the number (0–10) that best indicated the amount of distress they had experienced within the past week. A score of 4 is considered adequate to warrant intervention 33. Included in the screening instrument was a problem checklist consisting of 16 problems grouped into four categories: practical problems, emotional concerns, family problems, and nutrition problems. Patients were instructed to check all problems causing them distress within the past week. The final section of the screening instrument included a list of psychosocial providers within the cancer program (psychologist, social worker, dietitian, pharmacist, and resource navigator). Patients were instructed to check the box next to the psychosocial provider if s/he wanted to be contacted by that provider.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Demographic and clinical considerations

Table 1 shows the demographic and disease characteristics of the 1281 patients who completed the screening instrument. Respondents were an average of 61 years of age ((SD = 13.79; range, 22–96). The sample was 67.84% female and 32.16% male. Breast cancer patients constituted a majority of the sample at 20%, with prostate (5%), lymphoma (5%), colorectal (3%), and lung (3%) completing the list of patient-provided diagnoses.

Table 1. Participant characteristics (n = 1281)
VariableNo. of patients (%)
  • a

    aOther diagnoses include: bladder, bone, brain, melanoma, mouth, pancreatic, sarcoma, stomach, testicular, throat, thyroid, and tongue.

Age in yrs (mean; range)61; 22–96
Female869 (68)
Male412 (32)
Cancer diagnosis
 Breast251 (20)
 Cervical17 (1)
 Colorectal39 (3)
 Esophageal11 (1)
 Lymphoma58 (5)
 Lung36 (3)
 Ovarian18 (2)
 Prostate62 (5)
 Othera75 (6)
 Unreported714 (55)

Table 2 presents the frequency distribution of DT scores for the 1281 screeners. Forty-five percent of this sample reported a distress level of 0 (no distress), leaving 55% reporting distress ratings between 1 and 10. The mean distress intensity rating was 2.47 (SD = 2.96) and scores of one and five were the most commonly reported. The data indicate that 33% of subjects rated their distress between 4 and 10. Using 4 as the cut-off score, 423 patients required professional intervention from the psychosocial oncology staff.

Table 2. Frequency distribution of distress thermometer scores (n = 1281)
Score %No. of subjects%Cumulative %
05794545
1107853
293760
395767
460572
5104880
659585
770590
865595
925398
10242100

Table 3 shows the frequency distribution for endorsement of the 15 items in the problem checklist. Worry was the most prevalent problem endorsed on the problem checklist with 23% of patients checking this symptom. Worry was one of four items in the emotional concerns category. Overall, the emotional concerns category was the most frequently endorsed category with 59% of patients endorsing at least one of the four items. The second most prevalent problem, endorsed by 22% of the sample, was concern related to bills/money issues, an item that was located in the practical problem category. The family problems and nutritional problems categories received the lowest endorsement, ranging from 2 to 6%.

Table 3. Frequency distribution of problem checklist endorsement (n = 1281)
ProblemNo. of screeners%
Practical problems
 Housing544
 Bills/Money issues27722
 Insurance716
 Transportation595
 Information/Resources343
Emotional concerns
 Worry29623
 Sadness13010
 Depression14812
 Nervousness17514
Family problems
 Dealing with spouse474
 Dealing with children584
 Dealing with family716
 Dealing with friends222
Nutritional problems
 Weight changes504
 Difficulty eating605
 Loss of appetite363

Table 4 shows the number of problem checklist categories (out of four) endorsed by patients on the screening instrument. The majority (52%) of patients did not endorse a specific problem in any of the problem checklist categories. The remaining 48% of patients endorsed at least one problem item within one or more of the four categories. In addition, 16% of the total sample endorsed at least one problem in all four problem checklist categories.

Table 4. Number of screeners where patients endorsed problem checklist categories
Number of categories checkedNo. of screeners%
066752
116413
212910
31169
420316

Table 5 reports the frequency distribution of patient requests for psychosocial provider contact and the number of patients who requested a specific staff member who also rated their distress level between 4 and 10 on the DT. The percent of patients who asked to speak to a psychosocial provider and scored their distress from 4 to 10 ranged from 57 to 80%. More specifically, 57% of the people asking to speak to the pharmacist rated their distress between 4 and 10, whereas, 80% of the patients requesting the psychologist or resource navigator rated their distress between 4 and 10. The Cancer Dietitian was requested 50 times and 33 of those 50 patients reported distress between 4 and 10. The social worker was requested by 37 patients and 23 of those patients rated their distress between 4 and 10. The majority of patients made no requests for provider contact.

Table 5. Frequency distribution of request for psychosocial provider contact
ProviderNo. of screeners%No. of screeners with distress rating 4–10
Cancer resource navigator30224
Cancer social worker37323
Cancer dietitian50433
Cancer psychologist30224
Clinical pharmacist1418
No request112087 

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Guidelines for distress screening and psychosocial care of cancer patients have been discussed in the literature for over a decade 24–28. The general consensus among professional associations and governmental agencies is that the standard of care for all cancer patients should include screening for distress and the provision of psychosocial care for those cancer patients identified as being in need. The purpose of this article was to present the results of a clinical distress screening program within a community cancer center. Rather than discussing the importance of screening or the reliability and validity of a particular screening instrument, this article attempts to move the discussion forward by reporting the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers within a community cancer center.

A principal finding within this report was that 32% of this patient population reported distress intensity between 4 and 10 on the DT. This percentage falls squarely in the middle of the ranges reported in previous studies, which indicated 25–50% of cancer patient have distress levels that interfere with adaptation and functioning 1, 2, 31. The mean distress intensity rating for this sample was 2.47 (SD = 2.96) which is somewhat lower than the 3.41 (SD = 2.79) reported in Jacobsen 31. This difference may be attributable to differences in the two samples; Jacobsen 31 had a sample size of 380 patients accrued from four NCI-designated comprehensive cancer centers and a major metropolitan cancer center. In contrast, this inquiry has a sample size of 1281 patients accrued from one community cancer center. It is likely that these two samples represent very different demographic populations and therefore contribute to the discrepancy in scores because NCI-designated comprehensive cancer centers often treat rare cancers and patients often have to travel to obtain treatment. Each of these variables would conceivably increase distress levels. Unfortunately, the patient self-report data here do not allow for a deeper exploration of sample differences.

To put the principal finding (32% of DT ratings were between 4 and 10) into perspective, in this sample of 1281 patients 410 patients would require additional assessment and possible intervention from a psychosocial professional. To meet the recommendations of the IOM report 28 this cancer program would need to have adequate psychosocial staffing to not only administer and score the screening instrument, but to also provide the appropriate follow-up assessment resulting from screening as well as the necessary clinical interventions resulting from the assessments. Given the data that it is difficult for cancer programs to provide sufficient resources for screening alone, these data reveal the difficulty in providing psychosocial resources for the assessment and intervention that necessarily follows screening 29, 30.

Examination of the endorsement of the problem checklist indicates that worry is the most pervasive problem on the problem checklist, and the Emotional Concerns category is the most commonly endorsed category, with 59% of the sample indicating problems with one or more items in that category. One hypothesis for this finding could be that patients are more anxious prior to their first appointment with their physician. These data do not allow for this conclusion due to the absence of patient demographic data. It is unknown where in the cancer trajectory the patient was at the time of filling out this screener. Although we obtained our screening at the first appointment with a physician, it is unknown if the patient was experiencing recurrent cancer and/or had seen other physicians at other institutions.

The bills and money issues item was the second most common problem endorsed by this sample. These findings shed light on the concerns of a community cancer center population and help direct limited program resources to the areas of highest need: psychosocial programming and help with financial difficulties, which can fall under the auspices of social work or financial counseling. Reimbursement for psychosocial services covers, at best, a small percentage of the cost required to provide it. At worst, reimbursement for psychosocial services is non-existent. Therefore cancer programs need to utilize their psychosocial resources efficiently; distress screening allows for more efficient targeting of services to match needs.

Although dietary issues were less frequently endorsed on the problem checklist than other problems, the dietitian was the psychosocial provider whose services were most requested by this sample. One possible explanation for this finding is that although cancer patients may not feel dietary issues are creating distress for them; they may have a strong interest in obtaining more information regarding cancer-related dietary issues. A second hypothesis could be that meeting with a cancer dietitian has less stigma associated with it than meeting with a psychologist or social worker. This finding supports previous research indicating that the desire for psychosocial support is not necessarily correlated with distress 6. In addition, this observation demonstrates how oncology patients may have psychosocial needs that could easily go unnoticed in the absence of screening.

The screening program was initiated in September 2009. To make screening feasible, all medical oncology patients were given a screener at each appointment while radiation oncology patients were screened at their weekly physician appointment. The screeners are collected daily by a member of the psychosocial oncology department and the data is entered into a spread sheet. After identifying those patients who scored their distress level above four (57–80%) or asked to be contacted by a psychosocial provider, a message is sent through the electronic medical record and the appropriate psychosocial provider contacts the patient by phone. The psychosocial provider uses the phone contact to assess the responses to the distress screening and then determine the appropriate intervention. The goal of this program is to place the screening instrument on an electronic tablet that can forward the screening data directly to the electronic health record and generate an automatic referral to the appropriate provider.

Although these data come from a relatively large sample, the sample is from a single institution, which may limit its generalizability to other cancer patient populations. This report is limited by a lack of sample demographic data. The clinical screening instrument did not request information regarding stage of disease, new diagnosis or recurrence, location in the cancer trajectory, previous forms of cancer treatment, or verify the data that was provided by our sample. Another limitation is that the data were not designed to allow conclusions to be drawn regarding the clinical benefit of screening for distress. Further empirical investigation is needed to examine the benefits of an integrative model of psychosocial cancer care for patients who participated in screening and utilized the referral for psychosocial services.

This article demonstrates that distress screening can be accomplished within a community cancer center and provides estimates the prevalence of clinically significant levels of distress using a brief distress screening tool. Screening and appropriate intervention for psychosocial concerns are just the beginning of a truly integrative model of cancer care. In addition, prospective and systematic screening may address psychosocial problems before they become time consuming and disruptive to the medical treatment plan. Once needs are identified, it is important to have internal and/or external resources available to meet the identified needs.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

There are no financial and personal relationships between the authors and others that might bias their work.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References