Support Care Cancer (2012) 20:3343–3354

DOI 10.1007/s00520-012-1468-x

ORIGINAL ARTICLE

Psychosocial health care needs assessment of adult cancer

patients: a consensus-based guideline
D. Howell & S. Mayo & S. Currie & G. Jones & M. Boyle &
T. Hack & E. Green & L. Hoffman & V. Collacutt &
D. McLeod & J. Simpson

Received: 3 March 2011 / Accepted: 9 April 2012 / Published online: 13 May 2012
# Springer-Verlag 2012

Abstract (CAPO) partnered to develop consensus-based recommenda-

Purpose Although recommended as an essential part of
cancer care, there is limited evidence regarding the optimum
approach to psychosocial health care needs assessment in
this setting. To address this gap, the Cancer Journey Action
Group of the Canadian Partnership Against Cancer (CPAC)
and the Canadian Association of Psychosocial Oncology
tions regarding the routine assessment of psychosocial and
supportive care needs. The purpose of this paper is to sum-
marize the evidence that informed the guideline and dissem-
inate the recommendations developed by the expert panel.
Methods Clinical practice recommendations were developed
by a panel comprised of psychosocial and interdisciplinary

Disclaimer The views expressed herein represent the views of the

National Guideline Expert Panel, a sub-group of the Standards,
Guidelines and Indicators Working Group of The Cancer Journey
Action Group, Canadian Partnership Against Cancer. Care has been
taken in the preparation of the information contained in this document.
Nonetheless, any person seeking to apply or consult the practice
guideline is expected to use independent clinical judgment in the
context of individual clinical circumstances or seek out the supervision
of a qualified clinician. The Canadian Association of Psychosocial
Oncology makes no representation or warranties of any kind whatso-
ever regarding their content or use or application and disclaims any
responsibility for their application or use in any way.
Electronic supplementary material The online version of this article
(doi:10.1007/s00520-012-1468-x) contains supplementary material,
which is available to authorized users.
D. Howell : S. Mayo G. Jones
University Health Network (Princess Margaret Hospital), Peel Regional Oncology Program, Credit Valley Hospital,
Toronto, ON, Canada Mississauga, ON, Canada

D. Howell (*) M. Boyle

Lawrence S. Bloomberg Faculty of Nursing, Interlock Employee Assistance/BC Cancer Agency,
University of Toronto, Victoria, BC, Canada
Toronto, ON, Canada
e-mail: doris.howell@uhn.on.ca
T. Hack
S. Currie Faculty of Nursing, University of Manitoba,
Canmore, AB, Canada Winnipeg, MB, Canada

G. Jones T. Hack
Department of Medicine, McMaster University, Cancer Care Manitoba,
Hamilton, ON, Canada Winnipeg, MB, Canada
3344
experts. Recommendations were informed by a review of
oncology clinical practice guidelines, systematic reviews,
and primary research, through to May 2008. Following expert
consensus on the recommendations, the clinical practice
guideline was externally reviewed by a purposively selected
sample of national and international interdisciplinary experts.
Results A total of nine clinical practice guidelines, three sys-
tematic reviews, and 14 primary studies were included in the
review. Overall, this body of literature suggested that routine
collection of psychosocial health care data has an influence on
communication with oncologists and other study specific out-
comes, but the evidence was limited by heterogeneity and
methodological limitations. Based on the interpretation of this
body of evidence by clinical experts, research methodologists,
and external reviewers, 12 substantive recommendations were
developed regarding the process and parameters of psychoso-
cial needs assessment in adult cancer patients.
Conclusion Given the limitations in the current body of
evidence, there remains a need for rigorous empirical re-
search regarding the optimal approach to psychosocial
needs assessment, including the specific characteristics that
influence effectiveness on patient outcomes. This guideline
fills an important gap in psychosocial care, regarding the
routine assessment of psychosocial health care needs.
Keywords Psychosocial . Assessment . Guideline .
Consensus . Review . Cancer
Introduction
Individuals with cancer experience an array of psychosocial
health and supportive care needs [1–7] that are unfortunately
E. Green
Cancer Care Ontario,
Toronto, ON, Canada
L. Hoffman
McGill University Health Centre,
Montreal, QC, Canada
L. Hoffman
Royal Victoria Hospital/McGill University,
Montreal, QC, Canada
V. Collacutt
Alberta Health Services Cancer Care,
Edmonton, AB, Canada
D. McLeod
QEII Cancer Care Program,
Halifax, NS, Canada
J. Simpson
Halifax, NS, Canada
Support Care Cancer (2012) 20:3343–3354
not fully addressed in North American cancer systems [5,
8–10]. Psychosocial health needs encompass the mental,
emotional, social, and spiritual aspects of health and the
actions necessary to attain optimal well-being [10]. Cancer
patients also experience other physical, informational, and
practical needs that may influence psychosocial health. The
supportive care framework is inclusive of the psychosocial
as well as the physical, informational, and practical needs
that are important to address in cancer care [6]. Unmet needs
arise when there is a mismatch between cancer patients’
perception of their need and the appropriateness of services
provided [5]. Unmet needs contribute to physical and psy-
chological morbidity, generalized distress, poor quality of
life, and further disability [5, 11].
Routine distress screening using valid tools has recently
emerged as best practice across North America [10, 12, 13]
and international [14] cancer systems since clinicians are not
always accurate in their identification of patients who are
significantly distressed. However, the identification of the
presence and severity of distress does not fully explain the
underlying reason for distress nor does it point to a specific
course of action [15]. Moreover, the clinicians’ ability to
engage in discussions to identify factors contributing to
distress as well as patients’ ability to raise psychosocial
issues varies widely [7, 10]. A systematic and comprehen-
sive approach to screening and assessment that incorporates
psychosocial and supportive care needs may be a valuable
clinical tool [10, 15–20] and is key to identifying unmet
needs and for appropriate targeting of clinical interventions.
To date, there are no clinical guidelines to guide practi-
tioners and promote optimal and consistent practices regard-
ing psychosocial health and supportive care needs screening
and assessment [10]. This lack of clinical guidance for oncol-
ogy health professionals led to a partnership between the
Cancer Journey Action Group of the Canadian Partnership
Against Cancer (CPAC) and the Canadian Association of
Psychosocial Oncology (CAPO) to develop a clinical guide-
line on routine assessment of psychosocial and supportive
care needs. The purpose of this paper is to summarize evi-
dence that informed the development of the guideline and to
disseminate the recommendations for use in cancer care.
Guideline scope
The guideline entitled “A Pan-Canadian Clinical Practice
Guideline: Assessment of Psychosocial Health Care Needs
of the Adult Cancer Patient” was developed through consen-
sus of an expert panel guided by a conceptual framework of
supportive care needs developed by a task force of the Ontario
Cancer Treatment and Research Foundation [6]. Based on this
Supportive Care Framework [6], psychosocial health care
needs were defined as those parameters of needs arising in
Support Care Cancer (2012) 20:3343–3354
seven domains: physical, informational, emotional, psycho-
logical, social, spiritual, and practical as depicted in Table 1.
Specifically, the panel aimed to develop recommenda-
tions to address the following questions established a priori:
(1) Which domains of need should be included in a routine
psychosocial health care needs assessment for persons with
cancer?; (2) What are the appropriate timing and frequency
of assessments in the cancer continuum?; (3) What impact
does needs assessment as part of routine care have on out-
comes?; (4) Are there any well-established, evidence-based,
and valid measures that could facilitate assessment?; and (5)
Who should conduct these assessments?
Guideline development methodology
The guideline recommendations were developed following
the ADAPTE guideline development methodology [21].
The ADAPTE process was established by an international
collaborative group of guideline experts (www.adapte.org)
to ensure a systematic approach to the development of
recommendations from a synthesis of evidence from existing
guidelines and current primary research.
Expert panel
An interdisciplinary expert panel was purposively selected
based on their clinical and/or research expertise to develop
the guideline. This panel included a medical and radiation
Table 1 Domains and dimensions of supportive care needs an abbreviated list (adapted from [6]; published with permission)
Assessment parameters
Physical needs
• Physical comfort and freedom from pain, optimum nutrition,
activities of daily living; may include assessment of
complications such as late effects of treatment
Informational needs
• Information to reduce confusion, anxiety, and fear, to
inform patient and family decision-making, and to
assist in skill acquisition
Emotional needs
• sense of comfort, safety, understanding, and reassurance
Psychological needs
• Coping with illness experience and its consequences,
personal control, self-esteem
Social needs
• Related to family relationships, community acceptance,
and involvement in relationships
Spiritual needs
• Hope, belonging, meaning, and purpose of life
Practical needs
• Direct assistance or resources to accomplish tasks or activities
3345
oncologist, social worker, nurses, a psychologist, a psychi-
atrist, researchers, methodologists, administrative leaders,
and a cancer survivor.
Literature search
A systematic search for evidence was conducted in consul-
tation with a skilled information specialist. Clinical practice
guidelines, systematic reviews, and primary studies relevant
to the clinical questions were identified through a search of
electronic health science databases (HealthStar, Medline,
CINAHL, Embase, PsychINFO, Cochrane Database of Sys-
tematic Reviews, Database of Abstracts of Reviews of
Effects, Health Technology Assessments, and Cochrane
Central Register of Controlled Trials), online repositories
for guidelines (e.g., National Guideline Clearinghouse), and
cancer care organization websites [e.g., National Compre-
hensive Cancer Network (NCCN)]. Search terms included
cancer, neoplasm combined with various terms for “psycho-
social” screening, assessment, and support. Initial screening
of abstracts to determine eligibility for inclusion, quality
appraisal of studies, and data extraction were conducted by
a nurse coordinator and an experienced guideline method-
ologist. Identified guidelines were scored for quality by four
panel members based on the Appraisal of Guidelines for
Research and Evaluation (AGREE) methodology [22]. In-
clusion and exclusion criteria are listed in Table 2. A full
description of the search strategy is available in the guide-
line technical document (www.capo.ca).
Examples of needs
Nausea and vomiting, pain, fatigue, fertility, lymphoedema,
respiratory issues, cognitive impairment, bowel difficulties,
genitourinary difficulties, sleep disturbances, sexual dysfunction, etc.
Cancer treatment and side effects, how to handle or manage side effects,
care processes, patient education resources, system orientation, etc.
Fear, distress, guilt, grief, anxiety and depression, hope and
hopelessness, sadness, etc.
Changes in lifestyle, concerns about sexuality, loss of personal control,
fear of recurrence, self-image problems, body image problems, etc.
Changes in social roles, coping with interpersonal problems, starting
new social relationships, re-integration, return to work, social
support available to the patient
Search for meaning, existential despair, examining personal
values and priorities, hope and hopelessness
Costs (diagnosis, treatment, prostheses, aids), daily home help,
transportation, child care, elder care, loss of income, legal
and financial issues, system navigation
3346 Support Care Cancer (2012) 20:3343–3354

Table 2 Inclusion/exclusion criteria

Inclusion criteria Exclusion criteria

Clinical practice guidelines
Search for primary studies:
Search for psychosocial
assessment measures:
(1) Published since 2003[42] Focus limited to (1) individual physical symptoms
(2) Relevant to psychosocial health (e.g., pain management guidelines) or (2) specific
care needs assessment decision-making and/or communication techniques
(3) Specific to adult cancer patients
(4) Provided explicit links between empirical
evidence and substantive recommendations,
or were in widespread use in North America
Publication date: 2002–2008 Not published in English
Study design: systematic reviews, randomized
controlled trials, quasi-experimental trials,
and comparative cohort studies
Intervention: psychosocial assessment
Outcome: psychosocial outcomes
(1) Evaluated any measure to assess the psychosocial Study or measure not published in English
needs of adult cancer patients
(2) Provided data on the psychometric Study reviewed in included systematic review
properties of the measure

Development of recommendations Clinical guidelines identified varied in scope, although

The panel met monthly over a period of 12 months to
discuss the results of the literature review and to reach
consensus on the guideline recommendations based on the
body of evidence identified. Final consensus was achieved
in a full day face-to-face meeting using nominal consensus
voting procedures. Following completion of the draft guide-
line, a diverse interdisciplinary group of 25 clinicians with
content or methodological expertise internal and external to
Canada were sent a draft of the guideline. This group rep-
resented the fields of medicine, psychology, nursing, social
work, vocational rehabilitation, chaplaincy, research, and
health care administration. Each participant was invited to
complete a survey evaluating the guideline methodology,
interpretation of the evidence, and agreement with the draft
recommendations. Feedback was reviewed by the panel and
considered in the finalization of the guideline.
Results
each addressed some aspect of psychosocial health care
needs assessment. The effectiveness of psychosocial health
care needs assessment in primary randomized or quasi-
experimental studies was challenging to synthesize due to
heterogeneity in study design and outcomes of interest (see
Table 4). Psychosocial assessment approaches in these stud-
ies differed significantly both in format (e.g., semi-
structured interviews [23, 24], self-administered question-
naires [25–31]) and domains of need assessed. Three sys-
tematic reviews [7, 11, 32] and five primary studies [33–37]
provided information regarding the psychometric quality of
15 different measures that could be used for the comprehen-
sive assessment of psychosocial health care needs.
Answers to clinical questions based on literature and expert
consensus
Which domains of need should be included in a routine
psychosocial health care needs assessment for persons
with cancer?

Overview of the literature
A total of nine clinical practice guidelines, three systematic
reviews, and 14 primary studies met the criteria for inclusion
and comprised the evidentiary base (see Table 3). Due to a
paucity of primary evidence on effectiveness of psychoso-
cial assessment, all guideline recommendations were con-
sidered important if derived from a systematic review of
evidence even though rigor scores were low. The methodo-
logical strengths and weaknesses of the primary evidence
were considered by the panel to inform recommendations.
Relevant domains of need were apparent in two guidelines
[13, 14]. Based on a systematic review of the evidence, the
Australian National Breast Cancer Centre and National
Cancer Control Initiative [14] identified physical, emotion-
al, psychological, social, practical, and financial needs as
highly prevalent domains of need for individuals with can-
cer. Spiritual and existential issues were also identified as
important needs for inclusion at end-of-life [14]. Similarly,
the NCCN [13] identified practical, family, emotional, spir-
itual/religious, and physical problems as possible contrib-
utors to distress. While specific definitions for the domains
Support Care Cancer (2012) 20:3343–3354
Table 3 Included guidelines and studies reviewed by the panel
Clinical practice guidelines Applied studies of psychosocial assessment
Internet search of electronic databases 421 abstracts/titles
(Medline, CINAHL, Embase, PsycINFO), • 412 did not meet inclusion criteria
gray literature sources, and guideline (i.e., did not evaluate the effectiveness
repositories of assessment on psychosocial outcomes)
[13, 14, 20, 43–49] [23–31]
suggested by these guidelines were lacking, they appear to
be largely consistent with those outlined in the Supportive
Care Framework. That is, they reflect a consensus that
individuals with cancer may experience unmet needs that
extend beyond their physical symptoms, but also concern
many aspects of their psychosocial health and well-being.
Given these parallels and the expert opinion of the guideline
panel, a recommendation regarding the domains of need was
developed (Recommendation 2, Table 6).
What are the appropriate timing and frequency
of assessments in the cancer continuum?
It is commonly recognized in clinical practice that patients
have specific psychosocial and supportive care needs that
change across the continuum and which differ, or emerge, at
critical phases or points of transition [4, 10, 13, 38]. Based
on a systematic review of empirical evidence, the National
Institute for Clinical Excellence (NICE) [20] recommended
that systematic assessment should be particularly focused at
key points in the continuum, such as diagnosis, start of
treatment, completion of primary treatment, recurrence,
and palliative care. The NCCN [13] and Australian National
Breast Cancer Centre and National Cancer Control Initiative
[14] also identified similar periods of transition during
which a patient may be particularly vulnerable to distress
or experience unmet needs. Therefore, at a minimum, crit-
ical transition points along the cancer continuum should be
considered for the initial assessment or re-assessment of
these needs in order to ensure that psychosocial care needs
are identified in a timely manner as they change and evolve.
An adapted model of the cancer care continuum suggests
that these points include, but are not limited to, discovery of
initial symptoms, waiting period, medical workup, diagno-
sis, site staging, decision making, treatment, experience of
side effects, rehabilitation, recurrence or progression, ad-
vanced cancer, and end-of-life [38]. Prioritization of specific
psychosocial domains for assessment at particular phases in
the trajectory was not recommended in the guidelines
reviewed. However, it is recognized that different needs
may be more prominent at points in the cancer trajectory.
For example, emotional needs related to fear may be most
prominent at the time of diagnosis, while physical needs
3347
Psychosocial assessment measures
119 abstracts/titles
• 111 did not meet the inclusion criteria
(i.e., did not evaluate or provide psychometric
data regarding psychosocial assessment measure)
[7, 11, 32–37]
requiring symptom management may be the patients’ pri-
mary concern during the course of cancer treatment. A
consideration of this evidence by the expert panel led to
the development of recommendations regarding timing of
assessments (Recommendations 5 and 6, Table 6).
What impact does needs assessment as part of routine care
have on outcomes?
Five studies [26–30], as summarized in Table 4, investigated
the effect of providing raw questionnaire data to the treat-
ment team, particularly medical oncologists. Improved com-
munication regarding quality-of-life issues was reported in
three of these studies [26, 29, 30]. In a study by Taenzer et
al. (2000), more quality-of-life issues were discussed during
the clinic visit, as well as documented in the clinical chart,
when patients’ self-reported questionnaire responses were
provided to the nurse or physician, as compared to controls.
Similarly, in a randomized trial by Detmar et al. (2002),
standardized assessment of health related quality of life data
facilitated discussion of issues. Velikova and colleagues [30]
also reported that a significantly greater number of quality-
of-life issues were discussed during clinical encounters in the
intervention group, when the physician received self-
administered assessment questionnaire responses. In this par-
ticular study, improvements in emotional distress and overall
health-related quality of life were noted compared to a control
group that did not complete the questionnaires, but not when
compared to an attention control group who completed the
questionnaires that were not provided to physicians.
Two studies [25, 31] evaluated assessment protocols that
provided “interpreted” self-administered questionnaire
results to the treatment team. In a study by Boyes et al.
(2006), computer software was used to score questionnaire
responses and a feedback summary report of physical and
psychological symptom severity, supportive care needs, and
suggested interventions was provided to the oncologist [25].
In a study by Rosenbloom et al. (2007), an interviewer met
with each participant to discuss their self-reported responses
and a summary relayed to the treatment nurse [31]. Al-
though the Boyes et al. study [25] reported fewer debilitat-
ing symptoms in the intervention group at the third clinic
visit, there were no significant differences reported in either
3348 Support Care Cancer (2012) 20:3343–3354

Table 4 Effectiveness of routine, structured assessment on outcomes

Authors N Design Assessment Outcome domainsa Conclusions

intervention

Bramsen 2008 129 Cohort Interview Physical; Emotional/Psychological; Face-to-face screening appears to be
Netherlands Functional; Other: referral more effective in identifying patients
to psychosocial care interested in formal psychosocial
counseling as compared to an
ad hoc referral process. This may
result in improved physical and
mental health
Rosenbloom 2007 213 RCT Self-administered Physical; Emotional/Psychological; Routine assessment of health-
USA questionnaire Social; Spiritual; Functional; related quality of life, with
(interpreted) Other: satisfaction with medical feedback provided to treating
treatment; overall HRQOL nurses, is insufficient to
improve patient health-related
quality of life and satisfaction
Boyes 2006 80 Quasi-RCT Self-administered Physical; Emotional/Psychological; Repeated patient assessment, with
Australia questionnaire Other: supportive care needs feedback of summary results and
(interpreted) management strategies to medical
oncologists may improve symptom
control, but has limited impact on
emotional well-being
Kristeller 2005 118 Quasi-RCT Interview Physical; Emotional/Psychological; Exploring spiritual concerns
USA Social; Spiritual; Functional; with patients improves the
Other: sense of interpersonal perception of care and
caring from their physician; overall well-being
overall HRQOL
Velikova 2004 286 RCT Self-administered Physical; Emotional/Psychological; Routine repeated assessments of
UK questionnaire Social; Functional; Other: HRQL in individual patients had a
(uninterpreted) overall HRQOL; positive impact on physician–patient
clinical management communication and improved
some patients’ HRQL and
emotional functioning
Detmar 2002 214 RCT Self-administered Physical; Emotional/Psychological; Standardized assessment of
Netherlands questionnaire Social; Functional; Other: health-related quality of life
(uninterpreted) HRQOL; communication; facilitates the discussion of
physician awareness of patient’s quality-of-life issues
HRQOL; patient management;
patient or physician satisfaction;
duration of visits
McLachlan 2001 450 RCT Self-administered Physical; Emotional/Psychological; Making patient-reported cancer needs
Australia questionnaire Social; Spiritual; Functional; and quality of life data available to
(uninterpreted) Other: health information the health care team at a single
needs; visit times consultation does not appear to
reduce needs or improve quality
of life or satisfaction. Identification
of patients with moderate to severe
levels of depression may reduce later
incidence of depression in this group
Taenzer 2000 53 Cohort Self-administered Other: Patient satisfaction; number Screening quality-of-life information
Canada questionnaire and specificity of HRQOL items has the potential to result in marked
(uninterpreted) discussed during visit; documentation improvements in addressing and
of HRQOL items; actions taken based treating quality of life issues
on quality-of-life assessment
Sarna 1998 48 RCT Self-administered Physical Systematic nursing assessment of
USA questionnaire symptoms forestalled the increase
(uninterpreted) in symptom distress

HRQOL health-related quality of life, RCT randomized controlled trial, Quasi-RCT quasi-randomized controlled trial, Cohort prospective cohort study
a
As based on the Supportive Care Framework
Support Care Cancer (2012) 20:3343–3354
study across measures of physical, psychological, functional
well-being, quality of life, supportive care needs, or patient
satisfaction. These studies suggest that providing interpreted
questionnaire data to the clinician is insufficient for improv-
ing patient outcomes. More than half of the physicians in the
Boyes et al. study [25] did not discuss the report with their
patients.
As an alternative to self-administered assessment ques-
tionnaires, the use of a semi-structured assessment approach
by clinicians was also shown in two studies to have some
modest benefits for patients. In both studies, the intervention
involved use of a framework to guide the clinical assessment
of psychosocial needs, though clinicians were able to probe
for further information if required. Bramsen et al. [24]
reported an increased referral rate, improved physical func-
tioning and pain scores, and better role functioning in a group
of oncology patients who underwent a semi-structured inter-
view by a psychologist or social worker regarding their psy-
chosocial issues at the beginning of their inpatient stay, as
compared to a usual care group. In a study by Kristeller et al.
[23], when the treating oncologist used a semi-structured
interview to assess spiritual concerns, an improvement in the
relationship between the patient and oncologist was noted.
Based on the findings of these studies, the consensus of the
panel is that the systematic assessment of psychosocial health
care needs appears to have a modest impact on communica-
tion and may improve psychosocial, symptom, or health-
related quality-of-life outcomes. However, it is unclear what
processes of care or clinical interventions used by clinicians
following assessment may have contributed to changes in
outcomes. Our findings are consistent with conclusions in
the IOM report that there is little high quality evidence that
routine screening and assessment influences either patient or
family outcomes [10]. Although the current evidence fails to
establish the effectiveness of psychosocial health care needs
assessment, routine assessment of needs is acceptable to both
patients and clinicians, means to enhance communication [26,
29, 30]. Routine assessment of these needs is a policy in
countries such as Australia to ensure optimal provision of
supportive care [14]. This interpretation of evidence resulted
in the development of recommendations regarding the clinical
application of psychosocial health care needs assessment
(Recommendations 1, 7, and 8, Table 6).
Are there any well-established, evidence-based, and valid
measures that could facilitate assessment?
Across the guidelines reviewed, there were no recommen-
dations to guide clinicians in the selection of a measure to
facilitate a comprehensive and standardized assessment of
psychosocial health care needs [10]. In our search for data to
support the development of such a recommendation, three
systematic reviews [7, 11, 32] and five primary studies
3349
[33–37] were identified that provided information regarding
the psychometric quality (e.g., validity, reliability, respon-
siveness) of 15 different measures (see additional docu-
ments). Based on the scope of the current guideline, the
measures were further limited to those that were designed
for application to a general cancer population, could be self-
administered by patients, assessed a range of psychosocial
health care needs, and were psychometrically sound. Using
these criteria, the panel identified four measures that may be
useful for clinical application (Table 5). While the selection
of any tool for clinical implementation must also consider its
appropriateness to the local context, the use of such meas-
ures may help to capture a broad range of needs across
cancer populations consistent with the domains identified
in the Supportive Care Framework [6] and foster a more
person-centered approach in cancer care. Based on this
shared understanding and consensus of the panel, a recom-
mendation regarding the selection of assessment tools was
developed (Recommendation 9, Table 6).
Given the high volume of ambulatory visits in most
cancer organizations, initial screening might precede a com-
prehensive psychosocial health needs assessment of patients
as part of a triaging system. In the context of psychosocial
care, a screening process allows for a rapid identification of
individuals who are at high risk for distress and are likely to
benefit from a more comprehensive assessment to target
interventions and/or referral to psychosocial services. Clin-
ical tools utilized for screening are diverse and may be
limited to only some aspects of needs or include simple
yes/no problem checklists [4, 10, 13]. Although a psycho-
social health care needs assessment may be performed with-
out a preceding screen, a positive screen should always be
followed by a comprehensive assessment [4, 10, 13].
Patients who exhibit moderate or severe distress should be
discussed by the oncology team to determine a planned
response to distress based on the identified problems, scope
of practice, and if a need for specialist assessment and/or
intervention is required [16]. An extensive review of screen-
ing tools was not within the scope of this guideline. Overall,
it is acknowledged that while screening is a useful means of
indicating the need for further assessment, it is not
sufficient without attention to evidence-based clinical prac-
tices that could translate into improved patient outcomes
(Recommendations 3, 4, 10, and 11, Table 6).
Who should conduct these assessments?
An inter-professional model has been recommended for the
assessment of distress [10]. The expert panel agreed that
members of the front-line inter-professional health care team
hold primary responsibility for routine psychosocial health
care needs assessment. While the specific responsibility for
comprehensive psychosocial health care needs assessment

Table 5 Measures for psychosocial health care needs assessment
Cancer Rehabilitation Evaluation
System (CARES) [formerly the Cancer
Inventory of Problem Situations (CIPS)]
Purpose To assess day-to-day problems and
rehabilitation needs of patients with
cancer, and to measure health-related
quality of life. Developed for clinical
and research use
Method of Self-administered using paper
administration form; computerized scoring
and report writing
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Tauer, K., & Houts, A. C. (2003)
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of a computer administered system
for symptom screening and quality
of life in adult cancer patients.
Journal of Pain and Symptom
Management, 26(6), 1077–1092
3350
Cancer Patient Needs Questionnaire
(CPNQ) or Supportive Care Needs
Survey (SCNS)
To assess the unmet global needs
of people living with cancer
Self-administered using paper form
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people living with cancer. Cancer
Forum, 19(2), 131–135
Girgis, A., Burton, L., Cook, P.,
Care Review Group) (2000)
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assess the needs of patients
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Sanson-Fisher, R. W., Girgis, A.,
Boyes, A., Bonevski, B., Burton, L.,
Cook, P., et al. (the Supportive Care
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Support Care Cancer (2012) 20:3343–3354
Support Care Cancer (2012) 20:3343–3354 3351

Table 6 Psychosocial health care needs assessment for adults: substantive recommendations

Psychosocial Health Care Needs Assessment for Adults Substantive Recommendations*

Essential Domains of Assessment

Recommendation 1: A routine, systematic, and standardized assessment of psychosocial health care needs common across cancer populations is
recommended as a critical first step in the provision of appropriate, and relevant psychosocial and supportive care interventions and/or services.
Recommendation 2: Routine, standardized, psychosocial health care needs assessment should include physical, informational, emotional,
psychological, social, spiritual, and practical domains that are common across cancer populations.
Screening for Distress and Assessment
Recommendation 3: Screening for distress is recommended for use as an initial “red flag” indicator of psychosocial health care needs that should be
followed by a more comprehensive and focused assessment to ensure that interventions are targeted, appropriate, and relevant to the needs and
specific problems identified by the individual and family.
Recommendation 4: Screening for distress should not be limited to depression and anxiety symptoms alone but also include identification of
physical, informational, psychological, social, spiritual, and practical domains of psychosocial health care needs or concerns that contribute to
distress of cancer and treatment.
Critical Assessment Time Points
Recommendation 5: Routine psychosocial health care needs screening for distress and assessment is recommended at critical time points in the
cancer continuum. These include: initial diagnosis, start of treatment, regular intervals during treatment, end of treatment, post-treatment or at
transition to survivorship, at recurrence or progression, advanced disease, when dying, and during times of personal transition or re-appraisal
(e.g., in a family crisis, during survivorship, when approaching death).
Recommendation 6: Disease, treatment, or phase-specific psychosocial health care needs assessments should be added to routine, standardized
assessment across populations (generic) in order to tailor assessments to problems that are unique to a specific type of cancer, treatment modality,
or phase in the cancer continuum (e.g., post-treatment survivorship or incontinence after pelvic surgery).
Screening for Distress and Assessment Is Recognized as a Therapeutic Interpersonal Process
Recommendation 7: Routine psychosocial health care needs screening for distress and assessment is recommended as an interpersonal process to
elicit comprehensive information regarding patients’ needs for psychosocial and support interventions. Assessment may involve a combination of
self-report questionnaires and interview approaches and is dependent on effective communication as part of a therapeutic relationship between
patient and clinician.
Recommendation 8: Routine psychosocial health care needs screening for distress and assessment should be followed by evidence-based
interventions and targeted care processes appropriate to the identified need in order to improve patient outcomes including relief of symptoms,
emotional well-being and quality of life.
Tools that Support Comprehensive and Focused Assessment
Recommendation 9:
(a) A comprehensive assessment tool with sound psychometric properties that addresses all domains of psychosocial health care needs is recommended
for use in routine clinical practice. A number of valid and reliable tools that can support a systematic approach to identify the broad range of
psychosocial and support needs (i.e., Cancer Rehabilitation Evaluation System: CARES and the Supportive Care Needs Survey) are listed in Table 1.
(b) Focused assessments using a valid and reliable tool should follow a comprehensive assessment and be targeted to identification of the
parameters and dimensions of a specific problem (e.g. pain). For instance, use of the Memorial Symptom Assessment or similar tool to assess all
dimensions of symptoms (frequency, severity, distress) amenable to intervention or a specific tool to assess parameters of pain (location, severity,
quality, timing, aggravating or alleviating factors).
Tools that Support Screening for Distress
Recommendation 10: Screening for distress tools used as part of routine screening should be brief so as to minimize patient burden and maximize
ease of uptake into clinical practice; and should possess adequate sensitivity and specificity and established cut-offs for rapid identification of high
risk populations.
Recommendation 11: Problems and concerns checklists for use as part of “red flag” screening for distress should include all dimensions of
psychosocial health care needs using valid and reliable tools where they exist. Problems and concerns checklists should be recognized as
“indicators” of a need or concern only and should trigger a therapeutic dialogue between patient and clinician to obtain a more comprehensive
and/or focused understanding of the problem or concern.
Preparation of Providers and the Care System
Recommendation 12:
(a) Ongoing education of all members of the health care team is critical to ensure competent psychosocial health care needs assessment and
appropriate clinician response to findings of “red flag” screening for distress, and comprehensive and focused assessments.
(b) Interdisciplinary collaboration is recommended for routine, standardized psychosocial health care needs assessment and screening for distress
and targeting of interventions consistent with practice scope to effectively address multidimensional domains of need and/or facilitate appropriate
referral to discipline-specific and/or psychosocial oncology specialists and services.

*The recommendations are based on the expert consensus of an inter-professional panel, after a review of available evidence, guidelines from other
groups and current clinical practice in Canada.
3352
will vary based on organizational structure and available
resources, identification of health care needs is essential at
the patients’ first point of access to care. As such, those who
perform these assessments may include nurses, family
physicians, oncologists, and social workers appropriately
trained in the care of cancer populations and competent in
psychosocial assessment, therapeutic communication, and
psychosocial interventions appropriate to their scope of
expertise [15]. The use of patient-reported outcomes
(PRO) information systems that facilitate collection of self-
report data is becoming a viable option in clinical practice
and is acceptable to clinicians and patients [25, 26]. How-
ever, assignment of accountability for reviewing and
responding to self-report PRO data will be key to improving
outcomes.
A percentage of the population will have needs that
cannot be addressed by front-line clinicians who will require
referral to specialized psychosocial services. This reflects
emerging international health care policy and guidance
documents regarding a tiered approach for psychosocial
intervention, where the involvement of different health care
professionals is based on the level of distress identified [39].
For example, an identification of mild distress related to
informational needs may be addressed by front-line clini-
cian, whereas severe psychological distress may require
referral for more specialized or intensive psychosocial care
(e.g., psychologist, psychiatrist, mental health team).
Based on the consensus of the expert panel, a recommen-
dation regarding the responsibility of assessment was devel-
oped (Recommendation 12, Table 6).
Strengths and limitations
The combination of data sources to inform the recommen-
dations and the use of clinical opinion may have introduced
expert panel subjectivity bias in the development of guide-
line recommendations. However, every effort was made to
ensure that the recommendations developed were informed
by the available evidence and endorsed by a purposefully
selected diverse panel of medical and psychosocial experts
as part of the development and external review panels (e.g.,
all conflicts of interest were declared).
Moreover, the inclusion of evidence from non-randomized
and cohort studies may have introduced bias in the estimation
of the benefits of psychosocial assessment. For instance, the
small sample sizes in studies that tested the effectiveness of
standardized assessment may have overestimated the effects
on psychosocial outcomes.
The synthesis of evidence from North America and in-
ternational guidelines and primary research to inform rec-
ommendations developed in this guideline may have
enhanced its generalizability for use in cancer organizations
Support Care Cancer (2012) 20:3343–3354
outside of Canada who lack the resources necessary for
guideline development. It is recognized that adaptation of
the guideline may still be necessary based on contextual
differences (e.g., care delivery structures, professional
scopes of practice) and clinical judgment is still necessary
in use of the guideline by clinicians.
Discussion
While a large body of literature has documented the unmet
psychosocial health care needs of cancer populations, the
use of a structured and systematic assessment of a broad
range of these needs as part of routine distress screening and
clinical practice is lacking. As routine screening for distress
becomes a priority and standard of care for cancer care
organizations [18], equal attention needs to be paid to a
broad range of needs that should be included for assessment
as part of distress screening programs if a reduction in unmet
meets and other important outcomes such as improved quality
of life is to be realized. More important, although screening is
essential to identifying needs, evidence reviewed in this
papers suggests that alone it will not translate into improved
patient outcomes unless followed by a change in care process-
es [40] inclusive of comprehensive assessment, appropriate
interventions, and referral to specialists when required [41].
Screening programs should ensure that clinicians are prepared
to respond effectively through structured and focused assess-
ment processes and knowledge and skills in evidence-based
clinical practices. More important, barriers to implementation
of routine distress and supportive care screening must be
systematically identified and addressed.
In order to understand the impact of routine, standardized
assessment of psychosocial health and supportive care
needs, robust research is needed that reflects the complexity
of assessment as an intervention. Equal attention in such
trials must be placed on the selection of appropriate out-
comes that are causally related to the intervention and on the
processes of care or clinical practices necessary as part of
the intervention to influence the outcomes measured. Studies
that allow for the identification of the specific characteristics
that influence effectiveness (e.g., method of assessment, tim-
ing/frequency, and responsibility for these assessments) are
needed. More important, it will be necessary to identify sen-
tinel needs that when routinely assessed and acted upon have
the greatest potential to improve patient outcomes and possi-
bly health care-related costs. Further research is necessary to
guide practice and policy and promote uptake of routine
screening and assessment in cancer care.
This guideline fills an important gap in existing psycho-
social oncology guidelines, which to date have not offered
specific recommendations regarding assessment. The
NCCN [13] and the evidence reviewed in this paper
Support Care Cancer (2012) 20:3343–3354
suggests that early recognition and management of needs
may have several benefits, such as enhanced quality of care,
trust and satisfaction, and improvement in patient–provider
communication. Conversely, the failure to address psycho-
social problems results in needless patient and family suf-
fering, obstructs quality health care, and can potentially
affect the course of the disease and patient experience of
cancer [10].
Acknowledgments We acknowledge Health Canada and the BC
Cancer Foundation for supporting an initial review of psychosocial
guidelines; Mary Johnson, Carol Digout, and Patricia Oakley for their
technical expertise and contributions to this project; Margaret B.
Harrison, RN, PhD, and Joan van den Hoek for their consultation regard-
ing the ADAPTE process; Fay Bennie for administrative support; and the
expert clinicians and other stakeholders who provided valuable feedback
prior to the finalization of the guideline.
Research Support Production of this guideline has been made pos-
sible through a financial contribution from Health Canada, through the
Canadian Partnership Against Cancer.
Authors’ disclosures of potential conflicts of interest All authors
and expert panel members completed a disclosure declaration regarding
any conflicts of interest and none indicated a financial interest or conflict
of interest due to any other reason.
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