Quick answer
With a validated questionnaire. For screening purposes, choose a questionnaire that has been validated in the cancer population you are working with against the gold standard of diagnosis by interview.
Definition of Distress
Which questionnaire should I use to measure distress?
Brief review of questionnaires
Other points of interest
Definition of distress
Distress in cancer is defined as:
“a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioural, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.”
(National Comprehensive Cancer Network [NCCN] Clinical Practice Guidelines, p.6)1
The risk of distress varies between different cancer patients and at different points in the cancer journey. The National Breast and Ovarian Cancer Centre has published useful online guidelines on the psychosocial care of adults with cancer 2 that include (p.98) a list of factors associated with increased risk of psychosocial problems. Factors include both characteristics of the individual (e.g., age, gender) and characteristics of disease and treatment (e.g., time of diagnosis).
Which questionnaire should I use to measure distress?
From the definition above, it is clear that symptoms targeted in distress measurement may vary from mild to clinically significant. This has resulted in considerable confusion in the literature around suitable measurement tools. In general, as is usually the case, the specific research question of interest will determine which tool is appropriate.
Instrument type
Van’t Spijker et al. (1997) 3 have distinguished between questionnaires developed to assess the probability of a psychiatric diagnosis (e.g., depression and/or anxiety) and those designed to assess psychological problems more generally or related constructs such as stress response and adjustment.
The validity of questionnaires designed to assess the probability of psychiatric diagnosis is usually assessed against the ‘gold standard’ of diagnosis by interview or, as second-best, against a proxy gold standard of another questionnaire which has proven itself for this purpose. Validation of this kind is aimed at identifying questionnaires that have good sensitivity and specificity in identifying anxiety and/or depression and that are brief enough to use for screening cancer patients in research and in routine clinical practice.
Although questionnaires exist that have been designed specifically to assess psychological distress in cancer patients, the majority of studies continue to use instruments originally developed for use with the general or psychiatric populations.
As always, caution is needed before using a questionnaire that has been designed for use with another group. While the symptoms of distress in cancer patients may closely mirror those seen in other groups,4 their aetiology, characteristics, and assessment and treatment needs may sometimes be quite different. These differences are evident in the fact that items from general measures sometimes function differently when administered to people with cancer 5 and that questionnaire performance may sometimes even vary as a function of cancer type.6
Differences in the properties of various questionnaires are undoubtedly responsible for at least some of the variation seen in prevalence rates for depression and anxiety in cancer.3 However, other factors are also likely to complicate comparisons between different cancer samples, including: differences in symptom burden and prognosis between types;7 the likelihood that depression has a biological basis in some cancers that predates diagnosis;8 that feelings of hopelessness may play a special role in the distress of people with advanced cancer;9 and that some symptoms of cancer, such as pain and fatigue, demonstrate a close relationship with distress and may need to be assessed and treated concomitantly with the distress itself.10
Importantly, too, one needs to remember that distress in people with cancer is unlikely to be exclusively related to their disease or its treatment. For example, perceived social support has been found to be a better predictor of anxiety in women with ovarian cancer than response to chemotherapy, stage of disease or performance status.11
These complications underline the need to choose a questionnaire that has been validated in a population that, as closely as possible, resembles your sample.
Symptoms versus mood
A further distinction between questionnaires concerns the issue of whether they assess the mood and/or symptom/somatic components of psychological distress. While assessment of both will provide a more comprehensive picture, many symptoms commonly associated with distress - such as tiredness or lack of appetite - also arise from cancer and its treatment. Measures that assess the symptom component of distress may therefore lose specificity when used for screening purposes, with an increased likelihood of false positives.
State versus trait
Finally, questionnaires differ as to whether they measure state or trait variables – i.e. those related to a short-term episode of distress or to an individual’s long-term predisposition. One questionnaire, in particular - the State-Trait Anxiety Inventory (STAI) 12 – has been constructed to measure both kinds of variable in regard to anxiety.
Brief review of questionnaires
In 2004, Australia’s National Breast and Ovarian Cancer Centre made available an extensive online review of the psychometric properties of instruments used to assess psychological distress in women with breast cancer.7 The instruments discussed in this report are representative of those used in oncology more widely. See pages 62 to 65 of this review for recommendations on measures for each of a range of purposes.
The following are brief profiles of some of the most commonly used instruments as well as those developed specifically to assess distress in cancer patients. All questionnaires have demonstrated satisfactory psychometric properties in samples of mixed cancer patients. With the exception of the Distress Thermometer, MAX-PC, PDI, DASS and CES-D which are free for use in academic research, use of the questionnaires below attracts a fee. Follow the relevant links for further, up to date information.
Questionnaires used to screen for distress
Cancer-specific questionnaires
The DT and accompanying Problem List has been designated the initial screening tool for assessing distress in cancer patients by a NCCN panel that developed practice guidelines for distress management. The DT consists of a single item in which patients are asked to rate their global distress on a thermometer ranging from 0 to 10. In the Problem List, patients are asked whether they have experienced problems across 35 items covering five domains: practical problems (housing, insurance, work/school, transportation, childcare), family problems, emotional problems, spiritual/religious concerns and physical problems (symptoms). Based on comparisons with cut-offs for the HADS,14 HADS and BSI-18 15 and Centre for Epidemiological Studies-Depression Scale (CES-D),16 a score of 4 or more on the DT is considered a recommendation that a patient be followed-up in clinic. A recent meta-analysis of studies using the DT and other ‘ultra-short’ screening instruments has cautioned against relying on these to diagnose depression, mood disorders and anxiety; these instruments were found to be better at ruling out negative cases than in identifying positive cases.17 However, a study that combined the DT with a second single-item measure that asked patients to rate the impact of distress on their daily activities performed as well as the HADS in identifying adjustment disorders and major depression as the HADS in a sample of Japanese patients.18 The recall period for the DT is over the past week.
The Memorial Anxiety Scale for Prostate Cancer (MAX-PC) 19
The MAX-PC is an 18-item questionnaire that was designed to meet a perceived need for an assessment with greater sensitivity to highly-focused anxiety relating to prostate cancer diagnosis and treatment. The MAX-PC assesses three aspects of prostate-related anxiety: general anxiety related to prostate cancer and treatment, anxiety specifically related to prostate-specific antigen (PSA) testing, and fear of recurrence/disease progression. The MAX-PC has been validated in men both following diagnosis 19, 20 and undergoing tests prior to diagnosis 21 for prostate cancer. Recall period for the majority of items is over the past week, but for three items relating to severe anxiety, patients are asked whether statements have ‘ever’ applied to them.
The Psychological Distress Inventory (PDI) 22
Originally developed in Italian, the PDI is a 13-item questionnaire developed as a screening tool and outcome measure. It has been designed to assess emotional and interpersonal dysfunction in people with cancer at any stage of the disease including those who are terminally ill, specifically with regard to adjustment. While an English translation exists, validation to date has been on the Italian version only. The recall period for the PDI is over the past week.
General questionnaires
Introduced in 1961, the BDI is a 21-item questionnaire that measures both the mood and symptom components of depression. The BDI was constructed to assess the intensity of depression (mild-moderate, moderate-severe, severe) and was substantially revised in 1996 (Version II) to reflect changes in the American Psychiatry Association’s diagnostic criteria. Doubts have been raised as to whether the BDI is restricted to assessment of depression or might also measure other constructs such as stress and anxiety, and whether it measures state or trait variables.24 Anecdotally, researchers have complained of the negative tone of BDI items which have been reported to distress some patients. Patients respond to the BDI regarding the past two weeks.
The BSI is a 53-item tool that assesses 9 dimensions that include both mood and symptom components: somatization, obsession-compulsion, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation and psychoticism. Three global indices - the Global Severity Index, Positive Symptom Distress Index and Positive Symptom Total - measure current or past level of symptomatology, intensity of symptoms, and number of reported symptoms, respectively. The short form BSI-18 has also been validated to screen for distress in cancer outpatients 26 and adult survivors of childhood cancer.27 Patients respond to both instruments regarding the past week. The BSI is recommended by the National Breast and Ovarian Cancer Centre in the review mentioned above.
The CES-D is a 20-item questionnaire that assesses depressed and positive affect, somatic/physical symptoms of distress (loss of appetite, insomnia) and perceptions regarding interactions with others. The CES-D has been validated in cancer patients 29 and has been found to predict survival in long-term survivors.30 Patients are asked to recall their experience over the past week.
The DASS is a 42-item questionnaire developed in <st1:place w:st="on"><st1:country-region w:st="on">Australia</st1:country-region>. Factor analysis of the DASS in two studies carried out with the general population 31, 32 identified 3 factors: Depression, Anxiety and Stress. In its original validation study,31 the DASS showed good internal consistency (Cronbach’s alpha: Depression 0.91; Anxiety 0.84; Stress 0.90); in the second study, 32 the DASS correlated 0.81 with the Beck Anxiety Inventory (BAI) and 0.74 with the Beck Depression Inventory (BDI). Since these studies, The DASS has also been validated in clinical samples of people with psychiatric disorders where the DASS presented with good internal consistency (Cronbach’s alpha minimum: Depression 0.91; Anxiety 0.88; Stress 0.88), distinguished various anxiety and mood disorder groups in the predicted directions and had its factor structure confirmed.33 Convergent and divergent validity was demonstrated in comparisons with other rating measures of anxiety, depression, and negative affect. Patients are asked to recall their experience over the past week.
Published normative data is available for UK adults,34 and the manual includes normative data for the Australian general population.
Use of the HADS in cancer research has surged in recent years but may subside in the future given increases in fees for its use. It was originally designed to detect symptoms of depression and anxiety in patients attending medical outpatient clinics and excludes somatic symptoms. The HADS comprises 14 items, which are summed to provide a total score (HADS-T), as well as two subscales, purporting to measure anxiety (HADS-A) and depression (HADS-D). Despite routine use of the HADS as a proxy ‘gold standard’ against which to compare the performance of new measures, use of the HADS-T as a global measure of distress in cancer patients remains controversial, as does the HADS’ capacity to effectively screen for anxiety and depression in this group,36 especially with regard to patients with advanced cancer.37 More recent findings suggest that, using an optimal cut-off of 14/15, the HADS is effective in screening for major depressive disorder in cancer out-patients;38 the HADS may be less effective at identifying moderate or mild levels of distress.6 Patients respond to the HADS regarding the past week.
The following are points of difference found between the HADS and other questionnaires that may be worthwhile considering within the context of specific research objectives and samples:
- The short-form version of the BDI (13 items) has been found superior to the HADS depression scale in screening for minor depression in women with metastatic breast cancer.39
- The HADS recently outperformed another commonly used measure, the General Health Questionnaire (GHQ-12),40 in screening for anxiety and depression in cancer in- and out-patients.41
- The HADS anxiety subscale has been found to correlate strongly with the DT; the depression subscale and overall score, less so.14
- In its original validation study, an Italian version of the PDI outperformed the HADS in screening for distress in women with breast cancer who had started chemotherapy.22
- The MAX-PC has been found to be more sensitive than the anxiety subscale of the HADS to changes over time in men with prostate cancer.19
Questionnaires used to assess psychological distress more generally
The PSS is a 14 item scale designed to measure the degree to which situations in one's life are appraised as stressful. The PSS is suggested for examining the role of non-specific appraised stress in the aetiology of disease and behavioural disorders and as an outcome measure of experienced levels of stress. A 10-item version has also been developed. The recall period for the PSS is over the past month.
The POMS is a 65-item instrument designed to assess transient mood across 6 subscales: Tension–Anxiety, Depression–Dejection, Anger–Hostility, Fatigue–Inertia, Vigour–Activity, and Confusion–Bewilderment. A seventh score - Total Mood Disturbance - is calculated by subtracting the score on the one positively scored subscale, Vigour–Activity, from the sum of the other five subscales. A number of short-forms have been developed for use with cancer patients. These include an 11-item version that assesses only total mood disturbance 44 and a 14-item version that excludes items ‘reflecting somatic content’ and is summarised in a Negative Affect Scale and a Positive Affect Scale,45 and a 37-item version that retains all 6 subscales and has been extensively validated in cancer patients.46-48 The POMS asks people to report how they feel “right now”.
- Recently, a brief version of the Edinburgh Depression Scale (EDS) 49 – the BEDS - has shown promise for screening for depression in cancer patients.50 Including only 6 items, the BEDS is among the quickest instruments to administer if one excludes ‘ultra-short’ measures such as the DT.
- Research has examined the potential for HRQoL questionnaires to be used in screening for psychological distress. Skarstein et al. (2000) 51 found the emotional subscale of the EORTC QLQ-C33 (a previous version of the QLQ-C30) to be sensitive to anxiety but less so to depression as measured on the HADS.
- Findings from studies with the Rotterdam Symptom Checklist (RSCL) 52 and Edmonton Symptom Assessment System (ESAS) 53 caution against reliance on results from depression/anxiety items on scales designed to assess symptoms more generally.54, 55
- As in the case of other patient-reported measures, work is underway to develop item banks that will enable more efficient individual assessment of psychological distress via touchscreen computer.56
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NOTE: When citing information or advice obtained from PoCoG's Quality of Life Office Frequently Asked Questions, please use the following citation:
Psycho-oncology Co-operative Research Group (PoCoG) (2008). Quality of Life Office (online resource).
Last updated: 16th May, 2008