The clinical utility of the Distress Thermometer: a review

Abstract

The Distress Thermometer (DT) is a well validated screening tool, demonstrably sensitive and reasonably specific to the construct of distress in cancer. Its brevity makes it ideal to incorporate into a system of distress management. To ascertain how far this idea has been developed in practice, and to support future research, a literature review was undertaken. Medline, CINAHL, PsycINFO, Embase, ASSIA, British Nursing Index, AMED, CCTR, and HMIC were systematically searched. Forty studies were reviewed that examined the function of the DT alone, together with the problem list (PL), and/or other validated measures. The majority of studies validated the DT against other robust measures of distress in order to establish 'caseness' in these populations, and establish factors associated with distress. Many of the studies recommended that further research should test their findings in clinical practice. A small section of the literature focused on the clinical utility of the DT as a facilitator of consultations, and found it to have potential in this regard. It is concluded that there is enough validation research, and in line with the majority of these studies' recommendations, future research should focus on the utility of DT as part of a structured distress management programme.

Full text

The clinical utility of the Distress
Thermometer: a review
Austyn Snowden is Research Fellow in Psychological
Care and Therapies and Lecturer in Mental Health
Nursing, School of Health Nursing and Midwifery,
University of the West of Scotland; Craig A. White
is Chair in Psychological Therapies (Sessional),
University of the West of Scotland and Assistant
Director (Healthcare Quality, Governance and
Standards), NHS Ayrshire and Arran; Zara Christie
is Psychology Research Assistant, Ayrshire Central
Hospital; Esther Mur ray is Macmillan Consultant
in Psychosocial Oncology, Ayrshire Central
Hospital; Clare McGowan is Clinical Psychologist
in Psychosocial Oncology, Macmillan Distress
Management, Ayrshire Central Hospital; Rhona Scott
is Macmillan Clinical Nurse Specialist, Macmillan
Distress Management Team, Ayrshire Central Hospital
Accepted for publication: January 2011
Approximately 298 000 people in
the UK develop cancer every
year, with more than one in
three developing cancer over a
lifetime (Cancer Research UK, 2010). Many
people with cancer experience distress,
which is compounded by the impact of
However, tailored support is not always
available. Health professionals have historically
been found to be poor at detecting even
severe levels of distress (Fallowfield et al,
2001). Ad hoc methods of evaluation are
known to be less effective than systematic
methods (Homsi et al, 2006; Rosenbloom
et al, 2007). Oncologists tend to leave it
to patients to raise concerns if they have
them, or may even block patients’ attempts
to communicate their concerns (Maguire,
2002). Many clinicians feel uncomfortable
in bringing up the subject of distress and do
not feel this is necessarily part of their role
(Horne, 2006).
There has been a lot of work targeted to
addressing these issues and much of this has
involved the distress thermometer (DT). The
DT was originally developed in 1998 (Roth
et al, 1998) and is ‘a one-item self-report
screening tool for measuring psychological
distress in cancer patients’ (Hegel et al, 2008).
It uses an 11-point visual analogue scale
from 0 (no distress) to 10 (extreme distress)
(Keir et al, 2008). A score of 4 is widely
agreed to indicate a significant degree of
distress (Jacobsen et al, 2005; Hawkes et al,
2010). Increasingly accompanying the DT
in clinical use is a problem list (PL). The PL
identifies more specific aetiologies of distress
(Vitek et al, 2007).
Much of the DT literature has focused on
its ability to accurately capture the construct
of distress. Some studies explored the
function and validity of the DT alone (Roth
et al, 1998; Ransom et al, 2006; Jacobsen,
2007). Other studies have investigated the
utility of the associated PL (Hegel et al,
2006; Dabrowski et al, 2007; Graves et al,
2007; Gessler et al, 2008) or combined the
DT with other short screening tools to
address deficits in its validity (Clover et al,
2009; Mitchell et al, 2010a, 2010b). Some
adapt the original scale to individual local
requirements (Dabrowski et al, 2007; Shim
et al, 2008; Bulli et al, 2009; Grassi et al,
2009). In other instances the DT was tested
to see how well it perfor med as a screening
Austyn Snowden, Craig A. White, Zara Christie,
Esther Murray, Clare McGowan, Rhona Scott
Abstract
The Distress Thermometer (DT) is a well validated screening tool, demonstrably
sensitive and reasonably specific to the construct of distress in cancer. Its brevity
makes it ideal to incorporate into a system of distress management. To ascertain
how far this idea has been developed in practice, and to support future research, a
literature review was undertaken. Medline, CINAHL, PsycINFO, Embase, ASSIA,
British Nursing Index, AMED, CCTR, and HMIC were systematically searched.
Forty studies were reviewed that examined the function of the DT alone, together
with the problem list (PL), and/or other validated measures. The majority of
studies validated the DT against other robust measures of distress in order to
establish ‘caseness’ in these populations, and establish factors associated with
distress. Many of the studies recommended that further research should test their
findings in clinical practice. A small section of the literature focused on the clinical
utility of the DT as a facilitator of consultations, and found it to have potential in
this regard. It is concluded that there is enough validation research, and in line with
the majority of these studies’ recommendations, future research should focus on the
utility of DT as part of a structured distress management programme.
Key Words: Distress thermometer n Distress management n Cancer n Oncology
debilitating treatments (National Institute
for Health and Clinical Excellence (NICE),
(2004). Untreated distress has been shown
to result in greater pain, poorer physical
functioning, higher medical costs and longer
hospital stays, placing an added burden on
the individual and the healthcare system
(White, 2004).
Although evidence is not uniformly
positive (Lepore and Coyne, 2006),
psycho-educational interventions have been
shown to alleviate distress across a range
of factors, such as nausea and depression
(Devine and Westlake, 1995). Targeting
interventions in a systematic manner is
therefore considered the most appropriate
method of alleviating distress (Homsi et al,
2006). This approach aligns strategically with
current notions of shared care (The Health
Foundation, 2008; Elwyn et al, 2010), in
which the focus of the intervention aligns
with problems as defined and articulated by
the individual. Distress can subsequently be
minimized with tailored support (Schofield
et al, 2006), leading to a lower burden on the
individual and the healthcare system.
220 British Journal of Nursing, 2011, Vol 20, No 4

tool for onward referral (Graves et al, 2007;
Tuinman et al, 2008; Steinberg et al, 2009).
In some studies, the central role of the DT
was as a communication facilitator aimed
at identifying and managing distress within
the consultation process (Dabrowski et al,
2007; Thewes et al, 2009; Johnson et al, 2010;
Lynch et al, 2010).
In order to draw together these different
agendas, a qualitative synthesis was conducted
to explore the nature and range of the
conclusions and recommendations within the
DT literature.
Qualitative synthesis
Qualitative synthesis is becoming more
commonplace. In brief, the intention is to
bring the findings from ‘several discrete
studies into a larger interpretive perspective
that will lead to ongoing theory and practice
development’ (Molony, 2010). Methods vary
between syntheses, but all involve systematic
and rigorous comparative analysis of findings
from primary studies (Smith et al, 2005). The
search criteria, quality control and analytic
frame should be explicit (Snowden and
Martin, 2010). These are provided below.
Search criteria
Medline, CINAHL, PsycINFO, Embase,
ASSIA, BNI, AMED, CCTR and HMIC
were searched using the terms in Table
1. Duplicates were discarded. Articles not
available in English, discussing people under
18 years, or not focusing directly on distress
management in cancer, were excluded.
Articles not meeting the quality criteria
discussed were rejected. Only research papers
reporting primary data were included. Thirty-
seven articles were read in full. Interesting
citations not identified within the original
search were followed-up, resulting in 40
articles being eligible for review.
Quality control
Hierarchies exist for ascertaining the value of
quantitative research. Although these are not
without their critics, evaluation criteria for
ascertaining the relative value of qualitative
research are even more controversial. For
example, what may constitute an indication of
rigour in one article may be philosophically
incompatible with the epistemology of
another. In attempt to draw some sort
of consensus, Cohen and Crabtree (2008)
reviewed 4499 publications offering criteria
for evaluating and identifying rigorous
qualitative research. They found seven
evaluative criteria:
■1. Carrying out ethical research
■2. Importance of the research
■3. Clarity and coherence of the research
report
■4. Use of appropriate and rigorous methods
■5. Importance of reflexivity or attending to
researcher bias
■6. Importance of establishing validity and
credibility
■7. Importance of verification and reliability.
The final three points are particularly
problematic as the importance of each varies
between paradigms, and this is the point
made by Cohen and Crabtree (2008). There
is, however, wide agreement on the first
four criteria. Cohen and Crabtree (2008)
concluded that qualitative research should be
ethical, important, clearly articulated and use
appropriate, rigorous methods. The authors
of the present article suggest that these quality
criteria should extend to include all research.
These quality criteria were therefore applied
to the literature searching process, regardless
of paradigm, in order to justify inclusion in
the first instance (Table 2). Articles that did
not meet these criteria were excluded.
Analytic frame
The focus of the synthesis was on the
conclusions and recommendations made in
the individual studies. Practice development
was considered the primary goal of the review
(Molony, 2010), and therefore analysis was
geared towards generating a thematic analysis
of the conclusions and recommendations as
opposed to abstracting a theory of distress
management. This was a reflexive process
(McGhee et al, 2007) involving the research
team agreeing the range and scope of the
main themes.
For ease of reporting, the results were
categorized according to the purpose of
the original study. Those studies categorized
within Table 2 as ‘Comparative Analysis’
(CA) referred to any study in which the
primary purpose was to compare the DT or
an amendment of the DT with another scale
for the purpose of ascertaining its validity.
‘Implementation Study’ (IS) referred to any
examination of the utility of the DT or a
distress management programme in clinical
practice. Table 2 shows summaries of 30
comparative analyses and 10 implementation
studies. It is interesting to note that of these
40 studies, only 11 recommended further
comparative analyses. The majority call for
clinical implementation studies. To present
a synthesis of this trend, the conclusions
and recommendations of the studies were
analysed in detail.
Results
Comparative analyses
The majority of the literature focused on
ascertaining the validity of the DT in cancer
populations (Roth et al, 1998; Akizuki et al,
2003; Mitchell, 2007; Ozalp et al, 2007), with
many (Ransom et al, 2006; Hegel et al, 2008;
Shim et al, 2008) attempting to identify a cut-
off score on DT representive of clinically-
meaningful distress. Some attempted to
improve the deficits in validity by adding
other instruments or changing the DT in
some way. For example, Azikuzi et al (2005)
and Clover et al (2009) showed how the
addition of further scales identified a greater
proportion of distressed people. Two authors
created new instruments (Bauwens et al,
2009; Mitchell et al, 2010a, 2010b: Emotion
Thermometer and Distress Barometer) to
better capture the construct of choice. Keir et
al (2008a) attempted to use the DT to predict
risk factors for distress.
The specificity and sensitivity of the DT
has now been tested in many different cancer
populations and many different stages of
British Journal of Nursing, 2011, Vol 20, No 4 221
oncology
Table 1. Search criteria
Medline (cancer OR oncology OR lymphoma OR leuk) AND 70
(cognitive OR counsel OR therapist OR depression OR
distress OR anxi OR communication OR consultation) AND
(distress thermometer OR problem list)
CINAHL (cancer OR oncology OR lymphoma OR leuk) AND 38
PsycINFO (cognitive OR counsel OR therapist OR depression OR 54
EMBASE distress OR anxi OR communication OR consultation) AND 57
ASSIA (‘distress thermometer’ OR ‘problem list’) 18
British Nursing Index 15
AMED 7
CCTR 5
HMIC 4
Database Search string Returns

222 British Journal of Nursing, 2011, Vol 20, No 4
Table 2. Summary of study characteristics, conclusions and recommendations
(Akizuki et al, Asia Mixed 275 CA One-Question Interview is a valid tool for One-Question Interview may be suitable for
2003) screening patients with cancer for widespread use in routine screening (for
adjustment disorders and major adjustment disorders and depression)
depression. Comparable per formance to DT
(Akizuki et al, Asia Mixed 295 CA Screening performance of DT and IT was Developing an intervention pr ogramme in
2005) comparable to HADS combination with a screening test that can
be administered by the oncologist may
lessen psychological distress
(Bauwens et Europe Mixed 538 CA Dutch version of DT validated against Distress Barometer, which is convenient for
al, 2009) HADS. Overall accuracy of the new both patients and doctors, should be used
Distress Barometer was higher for detecting distress in cancer patients
(Bulli et al, Europe Mixed 209 CA Optimal DT cut-of f score for identifying Combining DT and PL could be a practicable
2009) distressed cancer patients was ≥ 7. These screening instrument for assessing the
patients were more likely to r eport extent and type of distress
problems in all issues on PL
(Campbell et Australia Mixed 439 CA Comparable findings with other studies DT should not substitute for existing
al, 2009) comparing DT with HADS, but conclude diagnostic instruments or be used as an
DT may generate high number of false accurate indicator of pathology
positives
(Child, 2010) UK Haem 30 IS DT appropriate screening tool in patients DT should be r outinely administered during
receiving chemotherapy. Participants all patients’ first and last appointments to
found it useful for structuring clinical facilitate conversation
conversation
(Clover et al, Australia Mixed 340 CA Two-stage screening algorithm improved Sequential administration of a very brief
2009) appreciably on the perfor mance of DT instrument followed by selective use of a
alone to identify distressed patients longer inventory may save time and
increase acceptability
(Dabrowski et US Breast 286 IS DT was an ef fective tool to screen, triage, Distress should be identified early and DT
al, 2007) and prioritize patient interventions, and should be used in clinical discussion
enhanced communication between
patients and staff
(Dolbeault et Europe Mixed 561 CA Optimal cutof f score for identifying Research should focus on the overall
al, 2008) distressed cancer patients on French DT psychometric properties of DT; enabling it
was ≥ 3; ef fective and acceptable in to be used as a clinical research instrument
ambulatory cancer care settings
(Hawkes et al, Australia Mixed 341 CA Community-based cancer helpline Important to have ongoing training and
2010) operators can feasibly use DT to screen support for Cancer Helpline operators who
for distress. Optimal DT cut-off score for will be implementing screening calls for
identifying distress was ≥ 4 distress
(Gessler et al, Europe Mixed 171 CA DT and PL are valid, rapid and acceptable DT should be used as an initial ‘talking
2008) as a scr eening (rather than a diagnostic) point’ to initiate discussions between
tool for UK cancer patients. Optimal DT patients and staf f. DT could be used as a
cutoff for distress was ≥ 4/5 ‘traffic light’ system differentiating severity
(Gil et al, Europe Mixed 312 CA Mood thermometer (MT) and DT were Both tools should be used to focus attention
2005) sensitive and specific. MT perfor med on psychosocial dimensions of cancer to
better than DT against HADS improve the referral process
(Grassi et al, Europe Mixed 109 CA DT cut-of f of 4 maximized detection of Ultra-short methods should only be
2009) anxiety and adjustment disorders, 5 was considered as an initial screen and not
optimal for detecting major depression replace structured clinical interviews
and persistent depressive disorder
(Graves et al, US Lung 333 IS DT, PL and two questions ef fectively Identification of distress must precede
2007) screened for distress. Younger age and referrals. Referrals and treatments should be
specific symptoms predicted clinically monitored to deter mine effectiveness of
significant distress clinical services for managing distress
(Hegel et al, US Breast 321 CA Optimal DT cut-of f score for identifying A comprehensive psychosocial evaluation
2008) distressed cancer patients was ≥ 7. DT should follow a positive DT screening
was comparable to PHQ-9 for detecting
depression
Author Sample Purpose Author conclusion Author recommendation
location Cancer site N

British Journal of Nursing, 2011, Vol 20, No 4 223
oncology
Table 2. Summary of study characteristics, conclusions and recommendations (Continued)
(Hegel et al, US Breast 236 IS DT identifies psychiatric disorders; in Research should refine current screening
2006) particular depression (96%) procedures and develop interventions to
address emotional distress and psychiatric
disorders
(Hurria et al, US Mixed 245 CA Relationship found between distress and Research should explore whether
2009) geriatric assessment, with poor physical interventions (e.g. aimed at improving
function best predicting distress physical functioning) help alleviate distress
in older cancer patients
(Jacobsen et US Mixed 380 CA Optimal DT cut-off for identifying Research must explore characteristics of DT
al, 2005) distressed cancer patients ≥ 4. These in both minority and low-literacy
patients more likely to report 22 of the populations. Clinical benefits of screening
34 problems on PL should be established
(Johnson et al, US Gynaecology 143 IS DT screens, triages and prioritizes. It is Research must explore the properties of DT
2010) cost-effective, can be completed in a busy as a ‘talking point’ for physicians, to
clinic and allows staf f to focus on those demonstrate their concer n about the
who most need help patient’s psychosocial issues
(Keir et al, US Brain 75 CA Distress positively corr elates with self- Research should explore interventions to
2008) reported emotional and physical concerns. reduce the overall distress experienced by
This population report more concerns the patient
compared to the general cancer population
(Keir et al, US Brain 83 CA Similar levels of distress in recently Research should identify the pattern of
2008) diagnosed and long-term survivors of distress and risk factors as they emerge over
brain cancer. Distress levels directly time
related to number of concerns
(Kvale et al, US Brain 50 CA DT is clinically relevant and proposes Research must explore the relationship
2009) interventions to maintain QOL between distress and QOL, and determine
whether interventions maintain QOL
(Low et al, Europe Mixed 171 CA Ultra-short 2Q depression screen has Patients scoring highly must be referred to a
2009) utility as a simple screening tool for suitable professional for a more complex
psychological distress in UK cancer psychological assessment. Adequate
patients resources must be in place
(Lynch et al, Europe Lung 33 IS DT helped patients discuss their feelings Screening tools should not replace clinical
2010) with staff and recognize their own coping interviews
skills. Did not increase referrals for
psychological support
(Mitchell et al, Europe Mixed 130 CA There is an added value of ET to identify Research must explore whether
2010) more emotional difficulties implementing the ET benefits patients
(Mitchell et al, Europe Mixed 130 CA DT can be improved by using in Additional research to determine the
2010) combination with other simple potential bur den on staf f and a cost–benefit
thermometers, incorporating anxiety, economic analysis
anger, depression and help
(Ozalp et al, Asia Mixed 182 CA DT identified distress in Turkish cancer DT should act as the first step for rapid
2007) patients. DT scores ≥ 4 were correlated distress screening. Increased understanding
with more emotional, family, and physical of patients concerns can then be followed
concerns by appropriate psychosocial interventions
(Ransom et US Bone 491 CA Optimal DT cut-off for identifying Research on DT should be conducted in
al, 2006) clinically significant distress was ≥ 4. 32 culturally and socioeconomically diverse
out of the 33 problems on PL were more samples. It should be determined how
likely reported by patients who scored ≥ 4 ef fective DT is as part of routine clinical
practice
(Roth et al, US Prostate 113 IS DT is a rapid and acceptable tool to screen Research needs to test DT and identify
1998) for distress in prostate cancer patients barriers on the part of the patient and
oncologist that hamper identification of the
most distressed cancer patients
(Shim et al, Asia Mixed 108 CA DT and PL is an effective screening tool Research should confirm DTs screening
2008) for detecting psychosocial distress in efficacy and psychometric properties using a
Korean patients (cut-of f ≥ 4). Patients multi-centred study, a large sample, and
scoring ≥ 4 showed more problems validating DT against SCID
on PL
Author Sample Purpose Author conclusion Author recommendation
location Cancer site N

224 British Journal of Nursing, 2011, Vol 20, No 4
illness. The DT has generated consistent
findings when compared with a variety of
other validated instruments. Although there
are exceptions (Hegel et al, 2008; Yamagishi
et al, 2009), possibly owing to studying
unusual populations, a cut-off of 4 is widely
considered to represent ‘caseness’ of distress,
with a sensitivity of 79% and specificity
of 81% against the Hospital Anxiety and
Depression Scale (HADS) (Gessler et al,
2008). In a meta-analysis, Mitchell (2010)
showed the pooled ability of the DT to detect
distress in 1477 patients was slightly lower,
with a sensitivity of 77.1% and specificity of
66.1%. There is now general consensus that
the DT is a clinically useful tool, although its
propensity for false–positive remains an issue
(Campbell et al, 2009).
Many studies attempted to identify factors
correlated with differing levels of distress.
Some found DT scores to be independent of
other variables such as months since diagnosis,
the stage of cancer, recurrence or metastasis
status (Graves et al, 2007; Keir et al, 2008;
Shim et al, 2008). Shim et al (2008) found
females reported significantly higher levels of
distress than males (t=2.7; P < 0.01), and this
finding has been repeated in other studies
(Hegel et al, 2006; Tuinman et al, 2008; Hegel
et al, 2008; Lynch et al, 2010). Younger age has
also been consistently predictive of increased
levels of distress (Hegel et al, 2008; Grassi et
al, 2009; Johnson et al, 2010). Problems with
family relationships, emotional functioning,
lack of infor mation about diagnosis/
treatment, physical functioning, and cognitive
functioning were also associated with higher
reports of distress (Graves et al, 2007).
Hurria et al (2009) found poor physical
Table 2. Summary of study characteristics, conclusions and recommendations (Continued)
(Shimizu et al, Asia Mixed 135 IS DT and IT identifies major depression and RCT should replicate results of the current
2005) adjustment disorders in cancer patients, study. It is necessary to address factors that
resulting in mor e patients being treated will enhance acceptance of psychiatric
by a psychiatric service referrals, optimizing the applicability of a
consultation
(Shimizu et al, Asia Mixed 491 IS DIT (Distress and Impact Thermometer) Work is needed to r educe the burden of
2010) resulted in significantly greater screening on nurses and increase the
identification of major mental illness and acceptability of onward referral to specialist
greater referral to psycho-oncology services
services
(Steinberg et US Lung 98 CA DT discriminates against emotional and Research should explore the cause-and-
al, 2009) physical distress. DT score may verify ef fect nature of the correlation between DT
which patients need further intervention and ESAS, and physical symptoms of lung
for emotional distress cancer
(Swanson and US Mixed 55 IS Cancer patients seen by oncology nurse Research is needed with a larger sample to
Koch, 2010) navigators were less distressed on identify the impact of oncology nurses on
discharge, and had greater patient distress in cancer inpatients
satisfaction
(Thekkumpurath UK Palliative 174 CA One third palliative patients experience Future research should focus on integration
et al, 2009) distress, and DT is as good as longer of psychological screening into routine
measures in its detection palliative care clinical practice and
development of care pathways based on
this
(Thewes et al, Australia Mixed 83 IS Psychological screening using DT did not Systematic implementation of DT is
2009) increase referral rates to psychosocial recommended. Resear ch should compare
support staff for patients with doctor-led vs nurse-led screening
psychological morbidity interventions within rural settings
(Tuinman et al, Europe Mixed 277 CA DT is good for routine screening and Repeat screening from the start of treatment
2008) ruling-out clinically-elevated distress; through to the follow-up. Implementing DT
cut-off ≥ 5. Screening for distress and the in routine clinical practice
wish for a referral can help provide support
(Yamagishi et Asia Mixed 462 CA Optimal DT cut-of f ≥ 6. Repeating DT can Research should explore the effectiveness of
al, 2009) effectively assess distress at follow-up. DT as a clinical tool to identify information
High DT scores do not necessarily about patient’s psychiatric comorbidity
indicate psychiatric comorbidity
(Zainal et al, Asia Mixed 168 CA DT is rapid and easy to administer. For mal psycho-oncology services should be
2007) Psychosocial problems were significantly developed to work jointly with mental
associated with distress health teams to enhance the management
of the patients
CES-D=Center for Epidemiological Studies-Depression Scale; DT=Distress Ther mometer; ESAS=Edmonton Symptom Assessment Scale; ET=Emotional Thermometer; HADS=Hospital
Anxiety and Depression Scale; IT=Impact Thermometer; CA=Comparative Analysis; PHQ-9=Health Questionnaire 9-item Depression Module; PL=Problem List; RCT=Randomized
Controlled Study; QOL=Quality of life; SCID=Standard Clinical Interview Diagnostic; STAI-S=State-Trait Anxiety Inventory Scale; IS=Implementation Study
Author Sample Purpose Author conclusion Author recommendation
location Cancer site N

British Journal of Nursing, 2011, Vol 20, No 4 225
oncology
function to be the best predictor of distress
in their study of older adults with cancer.
In people with brain cancer, Keir et al
(2008) also found a significant correlation
between physical problems and total number
of problems identified.
Eleven of the 40 studies reviewed
recommended further research devoted
to improving the screening potential of
the DT or its equivalent. However, the
remainder of studies reviewed in this
article recommended implementation studies.
For example, Mitchell (2010) made the point
that detection does not necessarily lead to
better care, and suggested the focus of the
research community would be better spent
evaluating the clinical impact of using the
DT as a screening tool. The following studies
have studied the function of the DT in
clinical practice.
Implementation studies
Ten studies were reviewed that evaluated
the implementation of distress management
following detection of distress with the DT.
Graves et al (2007) studied a consecutive
sample of 333 patients with lung cancer, using
the DT and PL to identify which problems
were associated with higher levels of distress.
Graves et al (2007) studied a consecutive
sample of 333 patients with lung cancer,
using the DT and PL to identify people
for referral to a support programme. One
of the most interesting findings is that less
than one third of patients reporting clinically
significant distress wanted further support.
The reason this is interesting is two-fold:
■This finding offers some evidence to
oppose the enduring belief that screening
for distress would overwhelm other services
(Gilbody et al, 2001), or unduly stretch
the skills of non-mental health-trained
clinicians (McDonald et al, 1999)
■This ratio of 1 in 3 consistently aligns
with other studies examining the rates of
offered help following detection of distress
to help actually taken up (Keller et al,
2004; Bauwens et al, 2009; Shimizu et al,
2010) (although the authors point out that
because of the increased detection rates,
this still resulted in an absolute increase in
referrals).
In order to investigate this issue, Lynch et
al (2010) performed an audit over a 3-month
period on the acceptability of the DT to
patients and clinicians in a lung cancer
outpatient setting in the UK. Thirty-three
patients completed the DT and PL. Clinicians
then supported these patients according to
identified need. Although 15 patients scored
4 on the DT, no patients wanted to be
referred for further support. Each individual
gave different reasons for their decision and
Lynch et al (2010) explore these reasons
in detail in their article. In brief, support
services were not overwhelmed in this small
study and the authors concluded that this
may have been because distress was managed
coherently during the clinical interview.
Thewes et al (2009) found no increase
in the rate of referral to a social worker or
psychologist among patients who participated
in a pilot study of distress screening. However,
contrary to their hypothesis that screening
would reduce unmet needs, participants in the
screened cohort reported significantly higher
levels of overall unmet needs, compared with
the unscreened cohort. The authors suggested
that this might have been because only half
of those who scored above cutoff (5 in this
case) on the DT were referred to specialist
psychosocial staff. As is clear from the studies
above, most people may not want a referral,
but screening without follow-up could raise
patients’ expectations and lead to reporting
higher levels of unmet need (Yamagishi et
al, 2009).
In terms of impact on clinical time, Johnson
et al (2010) studied groups of women with
gynaecological cancer and found the DT
could be administered without disrupting the
flow of the clinic. This was, in part, because
clinicians referred the patient to other
professionals once distress was identified.
Clover et al (2008) found that assessment can
be carried out without disruption by using
a touchscreen in the waiting room, and this
appeared acceptable to patients. Shimizu et al
(2010) found the DT took nurses an average
of 132 seconds to help patients complete.
In terms of utility, Dabrowski et al
(2007) suggested that the DT was valuable
as a prompt to encourage more relevant
dialogue between physician and patient.
The authors speculated from observing
clinical interactions that self-reported distress
often did not correlate with physician
estimates of patients’ distress. This has further
empirical support from the counterintuitive
absence of correlations found between DT
score and stage of cancer (Graves et al, 2007;
Johnson et al, 2010). Although this was
not a unanimous finding (Yamagishi et al,
2009), there is clear evidence of the need for
such a screening instrument and the need
to incorporate that information within a
consultation. Two studies (Thewes et al, 2009;
Johnson et al, 2010) focused on highlighting
the potential of the DT to act as a ‘talking
point’. These two studies concluded that
using the DT as a focal point of discussion
indicated to the patient that the clinician
was engaged and capable of coordinating
the entirety of their treatment. These studies
support Lynch et al (2010) by suggesting that
patient satisfaction may be increased in this
way. All implementation studies called for
further studies.
Discussion
There is consensus that a DT cut-off of 4
represents a useful distinction in screening
for distress (Akizuki et al, 2005; Shimizu et
al, 2005; Ransom et al, 2006; Graves et al,
2007; Jacobsen, 2007; Ozalp et al, 2007; Keir
et al, 2008; Shim et al, 2008; Grassi et al, 2009;
Hurria et al, 2009; Kvale et al, 2009; Hawkes
et al, 2010; Johnson et al, 2010; Lynch et al,
2010). There is subsequent overwhelming
agreement that implementation studies are
needed to find out what detecting distress
means in practice (Roth et al, 1998; Akizuki
et al, 2005; Jacobsen et al, 2005; Shimizu et
al, 2005; Hegel et al, 2006; Ransom et al,
2006; Dabrowski et al, 2007; Zainal et al,
2007; Gessler et al, 2008; Hegel et al, 2008;
Keir et al, 2008; Tuinman et al, 2008; Hurria
et al, 2009; Kvale et al, 2009; Low et al,
2009; Thekkumpurath et al, 2009; Thewes
et al, 2009; Yamagishi et al, 2009; Child,
2010; Johnson et al, 2010; Lynch et al, 2010;
Mitchell et al, 2010a, 201b; Shimizu et al,
2010; Swanson and Koch 2010). For example:
‘Further research is called for to
improve assessment and treatment
of distress and psychiatric
syndromes in the context of cancer.’
(Holland and Alici, 2010)
‘Future research should focus
on integration of psychological
screening into routine palliative care
clinical practice and development
of care pathways based on this.’
(Thekkumpurath et al, 2009)
It must be recognized that research
recommendations may not be given as much
critical attention as the body of a study
(Nieswiadomy, 2008). Nonetheless, there is
consistency within the recommendations
articulated here. Data on implementation are
fundamental, as is criticism of the efficacy of
psychosocial interventions in cancer patients
(Lepore and Coyne, 2006), and this type
of criticism is not assuaged by the bulk of
the literature reviewed. As Jacobsen (2007)

226 British Journal of Nursing, 2011, Vol 20, No 4
points out, a structured approach to distress
management has so far not been compared
with treatment as usual in a randomized
controlled trial (RCT). Qualitative data is
almost entirely missing from the literature.
Despite support for the utility of the DT
in structuring a consultation (Dabrowski
et al, 2007; Thewes et al, 2009; Johnson et
al, 2010), there are no studies investigating
how people feel about using the DT to
structure a consultation, nor any on the
clinical outcomes of such an approach.
Conclusions
The purpose of the DT is a screening
instrument for distress. The problem list
allows people to specify the issues of particular
concern to them. However, it is up to clinical
practitioners to help patients manage distress,
which moves beyond screening. Screening
in itself makes no difference even when
the results of this screening are fed-back
to clinicians (Rosenbloom et al, 2007).
When nothing happens as a consequence
of screening, distress may even increase
(Thewes et al, 2009; Yamagishi et al, 2009).
Appropriate support clearly needs to
follow the accurate detection of distress
using the DT (Swanson and Koch, 2010), but
there is minimal evidence that this support is
forthcoming or structured in any meaningful
way. Consistent with the recommendations
of the majority of the studies reviewed, these
disconnected findings need to be aligned by
combining the ability of the DT to detect
distress with the capacity of the workforce to
manage distressing symptoms appropriately.
Macmillan Cancer Support has funded an
evaluation of distress management in NHS
Ayrshire and Arran. Distress management in
this study will involve the patient completing
the DT and PL prior to consultation. The
consultation will then focus on distress as
defined by the patient in order to focus
discussion and offer help in a structured
manner. The evaluation will use a mixed–
methods approach. An RCT will measure
consultation time to provide objective
data to contrast with treatment as usual.
Qualitative analysis of patient interviews will
ascertain the process of distress management
from their perspective and identify factors
contributing to its success or failure. This
evidence will hopefully help move the
DT from screening instrument to active
facilitator of shared care.
Conflict of interest: none
This project was funded by Macmillan Cancer
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