Loading
Many people with cancer feel worried, low or overwhelmed, and money, work or caring for others add to it. Clinics often ask you to mark a scale from 0 to 10 for your distress in the past week and tick a list of problems. A score of 4 or more is a signal for the team to talk it through and offer help, such as a psychologist, social worker or chaplain. Screening only helps when someone acts on it.
NCCN's standard is that distress should be recognised, monitored, documented and treated promptly at all stages of disease and in all settings, with screening at the first visit, at appropriate intervals and whenever the clinical picture changes (Version 3.2019, the latest full text that could be read; the Version 1.2026 tool page still pairs the 0 to 10 thermometer with a problem list). The tool is a single 0 to 10 distress thermometer for the past week with a problem list of physical, emotional, social, practical and spiritual concerns. In NCCN 2019 a score of 4 or more triggers a further assessment and referral by the problem found (mental health, social work or chaplaincy); a score below 4 is handled by the oncology team as expected distress. The cut-off is a convention with known limits: NCCN itself cites a study in which a cut-off of 4 gave 95 per cent sensitivity and only 45 per cent specificity shortly after a breast cancer diagnosis.
ASCO (2014, adapting the pan-Canadian guideline) recommends that every patient be evaluated for symptoms of depression and anxiety at periodic times across the course of care using validated measures. ASCO's 2023 update sets out stepped care: education about depression and anxiety for everyone; for moderate symptoms, cognitive behavioural therapy, behavioural activation, mindfulness-based stress reduction, structured physical activity or psychosocial interventions; for severe symptoms, psychological therapy; and medicines where first-line care is unavailable, preferred, previously effective or has not worked.
The evidence that screening helps is conditional. In a randomised trial in 1,134 new patients, full screening with a problem checklist and triage lowered distress at three months against the thermometer alone, and the best predictor of improvement was receiving a referral; NCCN also records a randomised trial with no difference at 12 months, and concludes that screening is not enough without follow-up referral and treatment. In England the equivalent is the holistic needs assessment within personalised care and support planning (Macmillan and NHS); NICE's 2004 supportive and palliative care service guidance is retired.
Why: Distress is common and often missed in a busy clinic; asking at set moments catches it when it changes.
“At a minimum, patients should be screened to ascertain their level of distress at the initial visit, at appropriate intervals, and as clinically indicated, especially with changes in disease status (eg, remission, recurrence, or progression; treatment-related complications).”
Journal of the National Comprehensive Cancer Network 2019 · category 2A
Why: One number shows how much distress there is; the problem list shows what it is about, which decides who can help.
“Instructions: Please circle the number (0–10) that best describes how much distress you have been experiencing in the past week, including today.”
National Comprehensive Cancer Network 2026 · category 2A
Why: A validated questionnaire is more reliable than a general impression, and allows a change to be measured over time.
“It is recommended that all patients with cancer be evaluated for symptoms of depression and anxiety at periodic times across the trajectory of care. Assessment should be performed using validated, published measures and procedures.”
Why: Some distress is expected after a cancer diagnosis; the treating team can often address it directly.
“Mild distress (DT score <4) is routinely managed by the primary oncology team and represents what the panel terms “expected distress” symptoms.”
Journal of the National Comprehensive Cancer Network 2019 · category 2A
Why: A higher score needs a conversation and the right professional, matched to the problem behind it.
“If the patient’s distress level is ≥4, a member of the oncology team looks at the Problem List (discussed in the next section) to identify key issues of concern and asks further questions to determine the best resources (psychiatry, psychology, social work, or chaplaincy professionals) to address the patient’s concerns.”
Journal of the National Comprehensive Cancer Network 2019 · category 2A
Why: Most people need information and support; those with more severe symptoms need more intensive help.
“It is recommended to use a stepped-care model, that is, provide the most effective and least resource-intensive intervention based on symptom severity. All oncology patients should be offered education regarding depression and anxiety.”
Why: Psychological therapies improved depression and anxiety in the trials reviewed; the evidence for medicines in people with cancer was less consistent.
“For patients with severe symptoms of depression or anxiety, clinicians should offer cognitive therapy, BA, CBT, MBSR, or interpersonal therapy. Treating clinicians may offer a pharmacologic regimen for depression or anxiety for patients who do not have access to first-line treatment, prefer pharmacotherapy, have previously responded well to pharmacotherapy, or have not improved following first-line psychological or behavioral management.”
Why: Trials of screening without follow-up care found little benefit; those that linked screening to referral or treatment did better.
“Overall, results of these studies show that screening, although a critical component of psychosocial care, is not sufficient to impact patient outcomes without adequate follow-up referrals and treatment.”
How care is usually carried out, read from the guidelines and standards cited. Your own team's protocol and their judgement come first; this page is for understanding it, not for doing it yourself.
Screen at the first visit, at set intervals and at every change in disease, with the NCCN distress thermometer and problem list or another validated measure, and act on what is found: a score of 4 or more (NCCN) leads to assessment and referral by problem, and anxiety and depression are treated by stepped care (ASCO 2023), psychological therapies first. NCCN (2019 full text, 2026 tool) and ASCO (2014, 2023) agree on routine screening with validated tools; they differ in emphasis, NCCN on general distress across practical, social and spiritual problems, ASCO on anxiety and depression specifically. The randomised evidence supports screening only when it is coupled to triage and referral. The full NCCN 2026 text and the full ASCO 2023 text could not be read, so their grades are not given here.
Journal of the National Comprehensive Cancer Network 2019 · National Comprehensive Cancer Network 2026 · Journal of the National Comprehensive Cancer Network 2026 · ASCO, Journal of Clinical Oncology 2014 · ASCO, Journal of Clinical Oncology 2023 · Journal of Clinical Oncology 2010
Where it differs: A structured assessment of physical, practical, emotional and social concerns, on paper or electronically, leading to a personalised care and support plan agreed through a series of conversations, rather than a single distress score. Macmillan's page does not say at which points it should be repeated.
Evidence: Described by Macmillan Cancer Support as part of the NHS personalised care model; no trial of it was read. NICE's 2004 service guidance on supportive and palliative care, which set out a four-level model of psychological support, is retired and NICE says the health system is not expected to follow it.
Where it differs: Adds a problem checklist, an anxiety and depression screen, a personalised report on the medical file and an optional telephone triage with referral, rather than the thermometer alone.
Evidence: Randomised trial of 1,134 new patients with breast or lung cancer: in lung cancer, 20 per cent fewer patients in the triage arm still had high distress at three months; in breast cancer, full screening and triage both lowered distress against the thermometer alone. Receiving a referral was the best predictor of improvement. Read as an abstract.
Where it differs: Uses a cut-off above 4 to reduce false positives, for example 7 in women shortly after a breast cancer diagnosis.
Evidence: NCCN 2019 cites a study of 181 Dutch women in which a cut-off of 4 gave 95 per cent sensitivity and 45 per cent specificity, and a cut-off of 7 gave 73 and 84 per cent. NCCN kept 4 as its trigger.
| Recommendation | Grade, as printed | Source |
|---|---|---|
| NCCN recommendations on distress management “All recommendations are category 2A unless otherwise noted.” | category 2A unless otherwise noted | Journal of the National Comprehensive Cancer Network 2019 |
| A cut-off of 4 is sensitive but not specific shortly after a breast cancer diagnosis “However, an analysis including 181 Dutch women who completed the DT within 1 month after breast cancer diagnosis showed that sensitivity was 95% and specificity was only 45% when the recommended cut-off score of 4 was used.” | single diagnostic accuracy study, as cited by NCCN | Journal of the National Comprehensive Cancer Network 2019 |
Shares Mindfulness-based stress reduction and cognitive therapy, Quality of life and the tags protocol, supportive-care.
Shares Depression during and after cancer: the interview-based prevalence, and the care model that works, Mindfulness-based stress reduction and cognitive therapy, Screening for distress: what the thermometer can and cannot do, Anxiety after cancer, in survivors and in their partners and the tag psychosocial.
Shares National Institute for Health and Care Excellence, American Society of Clinical Oncology (ASCO) and the tags protocol, supportive-care.
Shares National Institute for Health and Care Excellence, American Society of Clinical Oncology (ASCO) and the tags protocol, supportive-care.
Shares National Institute for Health and Care Excellence, American Society of Clinical Oncology (ASCO) and the tags protocol, supportive-care.
Shares National Institute for Health and Care Excellence, American Society of Clinical Oncology (ASCO) and the tags protocol, supportive-care.
Shares Mindfulness-based stress reduction and cognitive therapy, Cognitive behavioural therapy for fatigue and distress, American Society of Clinical Oncology (ASCO) and the tags protocol, supportive-care.
Shares National Institute for Health and Care Excellence and the tags protocol, supportive-care.