Support Care Cancer (2009) 17:11171128

DOI 10.1007/s00520-009-0615-5

REVIEW ARTICLE

What are the unmet supportive care needs of people

with cancer? A systematic review
James D. Harrison & Jane M. Young & Melanie A. Price &
Phyllis N. Butow & Michael J. Solomon

Received: 14 October 2008 / Accepted: 2 February 2009 / Published online: 25 March 2009
# Springer-Verlag 2009

Abstract
Goals of work The identification and management of unmet
supportive care needs is an essential component of health
care for people with cancer. Information about the prevalence
of unmet need can inform service planning/redesign.
Materials and methods A systematic review of electronic
databases was conducted to determine the prevalence of
unmet supportive care needs at difference time points of the
cancer experience.
Results Of 94 articles or reports identified, 57 quantified the
prevalence of unmet need. Prevalence of unmet need, their
trends and predictors were highly variable in all domains at
all time points. The most frequently reported unmet needs
were those in the activities of daily living domain (173%),
followed by psychological (1285%), information (693%),
psychosocial (189%) and physical (789%). Needs within
the spiritual (1451%), communication (257%) and sexuality (3363%) domains were least frequently investigated.
Unmet needs appear to be highest and most varied during
treatment, however a greater number of individuals were
likely to express unmet need post-treatment compared to any
J. D. Harrison (*) : J. M. Young : P. N. Butow : M. J. Solomon
Surgical Outcomes Research Centre (SOuRCe), Sydney South
West Area Health Service & School of Public Health,
Royal Prince Alfred Hospital, University of Sydney,
PO Box M157, Missenden Road NSW 2050,
Sydney, Australia
e-mail: james.harrison@email.cs.nsw.gov.au
M. A. Price : P. N. Butow
Centre for Medical Psychology & Evidence Based Decision
Making (CeMPED), School of Psychology, University of Sydney,
Sydney, Australia
M. J. Solomon
Discipline of Surgery, University of Sydney,
Sydney, Australia

other time. Tumour-specific unmet needs were difficult to

distinguish. Variations in the classification of unmet need,
differences in reporting methods and the diverse samples
from which patients were drawn inhibit comparisons of
studies.
Conclusion The diversity of methods used in studies hinders
analysis of patterns and predictors of unmet need among
people with cancer and precludes generalisation. Welldesigned, context-specific, prospective studies, using validated instruments and standard methods of analysis and
reporting, are needed to benefit future interventional research
to identify how best to address the unmet supportive care
needs of people with cancer.
Keywords Supportive care needs . Unmet need .
Patient-centred care . Systematic review

Introduction
Patient-centred care is now recognised as a benchmark of
quality care for people who are affected by chronic
conditions such as cancer [19, 21, 37, 50]. Effective, highquality cancer care is now viewed as involving more than
just the delivery of anti-cancer therapy, and increasingly,
cancer service providers are required to address patients
supportive care needs. Supportive care can be defined as care
that helps a person with cancer and their family cope with
cancer and its treatment, from pre-diagnosis through the
process of diagnosis and treatment to cure, continuing illness
or death and into bereavement [29].
Supportive care needs are diverse. They can relate to
coping with the physical effects of cancer and its treatment
to psychological and psychosocial sequelae such as anxiety,
depression and feelings of isolation. Access to evidence-

1118

based information throughout the cancer experience is also

seen as an essential aspect of supportive care. Practical
measures such as assistance with transportation, activities
within the home and the provision of wigs and prostheses
also come under the umbrella of supportive care needs.
To ensure patients needs are addressed, there has been
an increasing interest in formal needs assessment. Over
30 years ago, the American Cancer Society commissioned
what is believed to be the first study that specifically
investigated the supportive care needs of people with
cancer in order to guide the development of new services
to address the social impact of cancer [1]. Needs that were
not addressed and where additional support was required
were classified as unmet needs. There is increasing
evidence that unmet needs can have a detrimental effect
on patients well-being [36, 51].
Assessment tools measuring patients needs are distinctly different to tools assessing quality of life and patient
satisfaction which aim to provide a summary snap shot of
patients health status and their evaluation of their care
processes [28]. In contrast, needs assessment is designed to
identify needs and measure their importance to the patient.
Unmet needs assessment adds a further dimension to needs
assessment by distinguishing how well needs have been
met and identifying those that remain unmet. In turn, unmet
needs assessment can provide the impetus to redesign
services and improve resources for people with cancer.
Assessments of unmet need are often administered
through cross-sectional mailed surveys or interviews with a
variety of patient populations at different stages of the
disease trajectory. Details of the range of instruments
available to assess the needs of people with cancer are
described elsewhere [28, 55, 74]. A commonly used
questionnaire is the Supportive Care Needs Survey [6]
(SCNS; and its precursor, the Cancer Patient Needs
Questionnaire [22]. These instruments contain a range of
items from five need domains (e.g. physical and daily living,
psychological, health system and information, patient care
and support and sexuality). Respondents rate their level of
need for additional support for each item on a five-point
need scale (ranging from no need to high need) for each
item. Similarly, the Cancer Rehabilitation Evaluation System
(CARES) [57, 58] measures need items from six domains,
first on a five-point scale to indicate whether the need applies
and then whether additional help is required. The Problems
and Needs in Palliative Care [54], Needs Evaluation
Questionnaire [68] and Psychosocial Needs Inventory [72]
are other examples of instruments that ascertain unmet need.
Alternate instruments enable a score to be calculated to
highlight how well each need item has been met (Cancer
Patient Needs Survey [23]). More often, however, a series of
questions specifically developed for individual studies are
developed to determine unmet need.

Support Care Cancer (2009) 17:11171128

In order to critically evaluate the body of evidence about

cancer patients unmet needs and to identify gaps in the
literature, a systematic review to determine the prevalence
of unmet supportive care needs at different stages of the
cancer experience was conducted. Specifically, the review
sought to (1) ascertain the prevalence of unmet supportive
care needs in adult cancer patients according to time point
of the cancer illness; (2) investigate differences in unmet
need for different tumour groups and different stages of
disease; (3) identify clinical and personal predictors of
unmet need; (4) document the design of studies that
investigate the prevalence of unmet need.

Search methods used for the identification of studies

A systematic search of electronic bibliographic databases was
conducted during the second week of June 2006. Databases
searched included Medline (1950 to week 1 May 2006),
CINHAL (Nursing and Allied Health; 1982 to present),
EMBASE (1980 to June 2006 week 1) and Psych Info
(1806 to week 3 May 2006). Societies and groups involved in
providing information and support to cancer patients such as
the American Cancer Society and Cancer Council Australia
were contacted for any studies that were commissioned.

Search strategy
The search strategy was developed with independent input
from two medical librarians due to poorly standardised
taxonomy and nomenclature for unmet need within bibliographic databases. The final search strategy was as follows:
(1) exp Neoplasms (MeSH) (all fields); (2) Cancer (free text);
(3) exp Needs Assessment (MeSH) (all fields); (4) Unmet
need$ (free text); (5) Need$ assess$ (free text); (6) Perceived
need$ (free text); (7) Support$ care need$ (free text); (8)
Psycho$ need$ (free text); (9) Physical need$ (free text); (10)
Information need$ (free text); (11) Patient satisfaction
(MeSH) (all fields); (12) Consumer satisfaction (MeSH) (all
fields); (13) #1 OR #2; (14) #3 OR #4 OR #5 OR #6 OR #7
OR #8 OR # 9 OR #10 OR #11 OR #12; (15) #13 AND #14.
Two additional searchers were conducted with specific
terms associated with the unmet needs of people with
colorectal cancer as this was a focus area of the research
team. However, this strategy is not reported and is available
from the authors.

Study identification/data extraction/analysis

Studies were included regardless of sample size, study
design and method of data collection if they reported

Support Care Cancer (2009) 17:11171128

1119

primary data from adults with cancer regardless of site and

stage of disease about the prevalence of unmet supportive
care needs. Exclusion criteria included the unmet needs of
children, young adults, caregivers or those at high risk of
developing cancer and studies in languages other than
English. Quality of life studies were also excluded as these
measures often state if a particular issue is a problem but do
not provide information concerning whether a patient is
receiving help for the issue and whether that help is
adequate [28]. Preliminary searches revealed that articles that
investigated satisfaction indirectly identified patients unmet
needs whilst exploring patients experiences of their care;
thus, it was decided to include these in the search strategy.
The titles and abstracts of all citations identified were
screened. The full texts of potentially relevant articles or
reports were obtained. The reference lists of articles and
Fig. 1 Flow diagram of results
of systematic review of unmet
needs of cancer patients

reports were also examined. Two reviewers independently

extracted data and assessed the quality of the studies using
a standard data collection form. Needs were classified into
11 domains, namely activities of daily living, communication, economic, information, physical, psychological, psychosocial, supportive care, sexuality, spiritual and
transportation. Activity of daily living needs included
instrumental or personal care items, terms which were
frequently referred to in North American studies.

Results
The search identified 22,781 potentially relevant articles, of
which 22,687 were excluded (Fig. 1). The remaining 94
articles were grouped by time point of the cancer illness

22,781 article titles screened by

one reviewer
20,510 rejected as titles
revealed not relevant

2,271 abstracts reviewed by one

reviewer

1,872 rejected as abstract

revealed not relevant

399 full text articles reviewed

independently by at least two
reviewers
305 rejected
22 satisfaction surveys
24 family, carer or health
professional perspective
36 questionnaire development
45 quality of life
58 not relevant
118 reported needs, problems
or concerns not unmet needs
2 non-English

94 articles

1 RCT

41 Surveys

24 Qualitative interviews

1 Cohort

14 Structured interviews

13 Focus groups

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Support Care Cancer (2009) 17:11171128

trajectory then by study design, cancer type and stage of

cancer. Qualitative studies were removed, leaving 57 studies
that quantified unmet need (Tables 1, 2, 4 to 6) with one
article [38] reporting unmet need at two time points.

Description of the studies by timing of cancer journey

Diagnosis phase
Three surveys [33, 67, 75] reported the proportion of unmet
needs of people who were newly diagnosed with cancer
(Table 1). Unmet needs were documented in the following
domains, namely, activities of daily living (510%),
economic (11%); information (1024%), physical (44%),
psychosocial (669%) and psychological (1217%). Cancer
type or stage specific unmet needs are not able to be
extrapolated due to the heterogeneous diagnoses of participants used in each study. Multi-level modelling to predict
unmet need was not conducted in any study at this time
point. Given the small number of studies identified at this
time point, the results may not be generalisable.
Treatment phase
Twenty-five studies [4, 9, 10, 15, 17, 20, 22, 23, 25, 27,
3843, 47, 51, 56, 63, 6871, 76] were identified that
quantified unmet supportive care needs of cancer patients
during the treatment phase of their illness (Table 2).
Seventeen studies document the proportions of unmet need;
the remaining eight calculate scores or infer unmet need.
Prevalence was highly variable in all need domains at this
time point (activities of daily living (489%); communication (257%); economic (1354%); information (1197%);
physical (2170%); psychosocial (2189%); psychological
(1885%); supportive care (1386%); sexuality (4963%)).
The prevalence of unmet need for each domain had the
largest variation during the treatment phase compared to
any other time point of the cancer illness. Furthermore, the

upper prevalence of unmet need for most domains was also

greatest at this time point. However, this is likely due to the
fact more studies have been conducted for people receiving
treatment cancer than at any other time point.
Three studies [20, 40, 41] that investigated the unmet
needs of people with specific diagnosis (prostate and lung)
reported higher levels of unmet needs compared to studies
that used heterogeneous samples of patients. Predictors
associated with a greater number of unmet needs being
reported during treatment also differ and included low
social support networks [48], low income [48], increasing
age [41], decreasing age (<60 years) [56], advanced disease
[41, 56] and not being told that the cancer was diminishing
[56]. There is also evidence to suggest that levels of
anxiety, depression, physical symptoms and perceived
needs appeared interrelated, with elevated depression
associated with unmet need [51].
There was only one study [47] identified in this review
that prospectively measured unmet needs over time, thus
acknowledging the potential for unmet needs to change
over the duration of a cancer illness. Baseline interviews
were completed by 629 (63%), and a further 434 (43%)
completed the final follow-up. Baseline unmet need for
activities of daily living was found to be low, between 2%
and 12% for issues such as bathing, dressing, cooking,
shopping and transportation. Prevalence of these needs at
follow-up remained low at 56%. Whilst the only study to
measure needs over time, the large attrition of 195 patients
and final response rate of 43% is likely to introduce bias
into this study. Furthermore, 116 of those lost to follow-up
had died, and these patients had significantly higher levels
of unmet needs at baseline compared to those who
remained in the cohort for the duration of the study. This
has the potential to bias the study results to more healthy
participants who perhaps had less unmet need.
In 1995, Foot et al. [22] completed the first Australian
study to measure unmet needs using the Cancer Needs
Questionnaire (CNQ) among 358 participants with various
cancers (stage of disease is unclear). Participants perceived

Table 1 Cancer patients unmet supportive care needs at diagnosis

Author

Sample size (consent)

Cross sectional surveys

Houldin [33]
105a
Whelan [75]
134 (86%)
Sutherland [67]
171 (43%)

Patient cancer
characteristics
Type

Clinical stage

Mixed
Mixed
Mixed

Unclear
Mixed
Unclear

Reported level of unmet need by domain (proportion or description)

PS=4369%
ADL=5%; Ec=11%; P=44%; PS=6%; Psy=17%
ADL=10%; I=1024%; Psy=12%

ADL activities of daily living, Ec economic, I information, P physical, PS psychosocial, Psy psychological
a

Response rate not reported

Support Care Cancer (2009) 17:11171128

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Table 2 Cancer patients unmet supportive care needs during treatment

Author

Sample size
(consent)

Patient cancer
characteristics

Reported level of unmet need by domain

(proportion or description)

Type

Clinical stage

Prospective cohort
Mor [47]
Surveys
Billet [4]a
Somjai [63]
Krishnasamy [39]c,d
Li [40]d
Duke [20]c
Lintz [41]
Campbell-Forsyth [10]

434 (43%)

Mixed

Mixed

ADL=56%; T=6%

79 (20%)
90b
209 (45%)
63 (57%)
385 (77%)
210 (89%)
40b

Breast
Gyn
Lung
Lung
Prostate
Prostate
Mixed

Unclear
I-III
Unclear
Mixed
Unclear
Mixed
Mixed

I, PS, SC (unmet needs noted but proportions not reported)

PS (scores highlighted unmet needs were low)
I, SC (infers unmet need but proportions not reported)
ADL50%; Psy40%
DS=5773%; I=93%; Psy= =85%; SC=8586%
Psy=65%; I=59%; P and ADL=58%; Sx=49%; SC=33%
I (score calculated infers unmet needs were low)

Longman [42]
Gates [23]
Newell [51]d
Sanson-Fisher [56]d
Taylor [70]
Tamburini [69]

30b
69 %%
195 (89%)
888 (65%)
120 (44%)
182 (81%)

Mixed
Mixed
Mixed
Mixed
Mixed
Mixed

Mixed
Mixed
Mixed
Mixed
Mixed
Mixed

Jonker-Pool [38]d

264 (78%)

Mixed

Mixed

Bullard [9]
Foot [22]e
McCaughan [43]d

14 (30%)
358 (75%)
40 (53%)

Mixed
Mixed
Mixed

Unclear
Unclear
Unclear

ADL=1214%; C=56%; DS=1517%

ADL, Psy, SC (scores highlight needs well met)
C=2%; I=11%; P and ADL=30%; Psy=23%; SC=4%
I=3136%; P and ADL=33%; Psy=3040%
ADL=31%
C=2045%; DS=1159%; Ec=1940%; I=3261%;
SC=1339%
I, SC (infers unmet need was present for I (5767%)
and SC (5078%))
Sx=63%
I80%, Psy80%; P and ADL70%; SC60%; C40%
I=97%

423 (86%)
28b
111 (95%)

Mixed
Mixed
Mixed

Unclear
Unclear
Unclear

C=3757%; DS=756%; Ec=1347%; I=5175%; SC=1138%

Ec=2530%; I=1832%; P=21%; Psy=1843%
ADL=2873%; Ec=54%; Psy=48%; T=43%

413 (82%)
80 (63%)
90 (79%)

Mixed
Breast
Prostate

Mixed
Mixed
Unclear

ADL=419%; I=11%
ADL and PS=2189%
I, PS (scores highlight unmet needs were high)

Tamburini [68]e
Clavarino [15]d
Gozum [25]
Interviews
Wool [76] and Guadagnoli [27]f
Davis [17]a
Templeton [71]

ADL activities of daily living, C communication, DS disease/study specific, Ec economic, Gyn gynaecologic cancer, I information, P physical,
PS psychosocial, Psy psychological, SC supportive care, Sp spiritual, Sx sexuality, T transport
a

Retrospective assessment of unmet needs

Response rate not reported

Study ascertains retrospective and current unmet needs

Study does not report unmet need by domain, only selected or limited unmet need items reported

Validation of instrument exercise

Studies present the same data

level of need was dichotomised to some need (low,

moderate or high need) or no need (no need, need
satisfied). Lintz et al. [41] used this same classification
when assessing the unmet needs of 210 men with varied
stages of disease using the Supportive Care Needs Survey
[6] (a later version of the CNQ). The level of unmet need in
both studies [22, 41] were found to be high for all domains
and ranged between 65% and 80% for psychological, 59%

and 80% for health information, 58% and 70% for physical
and daily living, 33% and 60% for supportive care and 49%
for sexuality.
Further direct comparisons between studies that have
used either the CNQ or SCNS are not possible, despite use
of the same study instrument, due to differences in how
unmet need is classified and reported. Reports of such a
high prevalence of unmet need however have not been

1122

replicated. For example, Sanson-Fisher et al. [56] measured

the unmet needs of 888 patients of mixed diagnoses and
stages of disease. Some need in this instance was
categorised as those participants reporting a moderate or
high unmet need, and only the top ten ranking needs were
reported, unlike previous studies that reported the total
prevalence of need in each domain. Items within the
psychological and health system and information domains
still dominated. Not surprisingly, rates of patients with
some unmet need were lower using this reporting system.
Between 30% and 40% of respondents were found to have
unmet needs for five psychological issues and three health
system and information issues. In contrast, Newell et al.
[51] identified even lower levels of unmet need despite
using the same categorisation of some need thus highlighting the fluctuating nature of unmet needs in different
contexts.
A recent development in the application of the SCNS is
the ability to report a standardised or mean score for each
need domain. Li et al. [40] calculated the mean number of
needs. Secondary analysis of data from the Sanson-Fisher et
al. [56] study was conducted comparing those diagnosed
with lung (n=68) and other individual cancers. Overall,
lung cancer patients reported a significantly higher burden
of unmet needs (15.6 out of 59 items per person) compared
to all other patients (10.9 per person) and to those being
treated for either breast (p=0.04), prostate <(p<0.001),
colorectal (p=0.05) or melanoma (p<0.001) cancer. This is
not surprising given that a diagnosis of lung cancer was
found to significantly predict high unmet needs in both the
psychological and daily living domains. These results suggest that lung cancer patients have a range of issues that are
specifically associated with their diagnosis which were not
clearly identified within the original cohort [56]. The most
commonly reported items from studies that utilised the
CNQ or SCNS [15, 22, 40, 41, 51, 56] are shown in
Table 3.
Variation in the prevalence of unmet needs was not
confined to those studies that utilised the SCNS. Regardless
of study method used to collect unmet need data, the
prevalence of unmet need was consistently found to vary
for people being treated for cancer [68, 69]. Whilst some
survey instruments allow for the prevalence of unmet needs
to be identified, some surveys and interviews have used
other methods to determine unmet needs. One method
asked participants to rate whether they have a need for an
item on a continuous scale and then to rate how well they
feel that the need was met on a similar scale. The calculated
difference between these scores provides a needs-met score,
with higher scores indicating that needs are met.
Conflicting results using this approach have been published
which makes generalisation difficult to patients with similar
cancers. Two studies have demonstrated that psychosocial

Support Care Cancer (2009) 17:11171128

Table 3 Commonly reported unmet items from studies (n=9) that
used the Supportive Care Needs Survey
Psychological
Fears about the cancer spreading
Concerns about the worries of those closest
Uncertainty about the future
Information
Informed about things you can do to help yourself get well
Being adequately informed about benefits and side effects
of treatment
Informed about remission status
Physical and daily living
Pain
A lack of energy/ tiredness
Not being able to do things you used to do
Work about the home

[63] and information needs [10] were well met with another
revealing high levels of unmet information need [71].
Advanced and palliative care phase
Nine studies [2, 14, 26, 35, 49, 53, 59, 60, 73] identified in
the review looked specifically at people with cancer who
were in the palliative stages of their disease (Table 4).
Needs varied and include those in the activities of daily
living domain (152%), communication (3436%), economic (1360%), information (39%), physical(789%),
psychosocial (744%), psychological (1641%) and spiritual (1433%) domains. Despite all participants having
metastatic or recurrent disease, the level of unmet need in
each domain was comparable to other time points of the
cancer illness.
Needs within the activities of daily living domain were
reported in six of the nine studies, and all highlighted the
challenges of advanced disease on everyday activities. Only
one study [2] reported the needs of a specific cancer type
namely breast cancer. The levels of unmet need in this
study were comparable to studies where mixed cohorts
participated. Predictors of unmet needs were reported in
one study [14] which found that women, those living alone,
diagnosed of breast cancer, reporting more physical
symptoms and non-Caucasians were more likely to express
unmet supportive care needs.
As in the treatment phase, the variety of reporting
methods used in studies of unmet needs in patients with
advanced cancer thwarted synthesis of their findings. For
example, Hwang et al. [35] assessed 296 symptomatic
veterans and found the prevalence of at least one unmet
need was highest for the physical (260 (88%)) domain (e.g.
nausea, fatigue) followed by the psychosocial (130 (44%))

Support Care Cancer (2009) 17:11171128

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Table 4 Cancer patients unmet supportive care needs during the advanced/palliative stages of disease
Author

Sample size
(consent)

Patient cancer
characteristics
Type

Clinical stage

Reported level of unmet need by domain (proportion or description)

Randomised controlled trial

Siegel [59]
109a
Surveys
Aranda [2]b 105 (61%)
Osse [53]
94 (84%)
Hwang [35] 296 (95%)
Voogt [73]
128 (67%)
Interviews
Grobe [26]
30c
Mor [49]
217c

Mixed

Mets and Rect

ADL=447%; T=3338%

Breast
Mixed
Mixed
Mixed

Mets
Mets
Mets
Mets

I=2641%; Psy=2441%; P and ADL=2528%

ADL=636%; C=3436%; Ec=1960%; P=731%; Psy=1635%; Sp=1433%;
Ec=20%; DS=1214%; P=89%; PS=44%;
I=39%

Unclear
Mixed

Mets
Adv

ADL=117%; Ec=13%; PS=79%

ADL=2052%

200c
483 (90%)

Mixed
Mixed

Mets and Rect

Rect

ADL=18%-43%
ADL=20%

Christ [14]
Siegel [60]

ADL activities of daily living, Adv advanced disease, C communication, DS disease/study specific, Ec economic, I information, Mets metastatic
disease, P physical, PS psychosocial, Psy psychological, Rect recurrent disease, Sp spiritual, T transport
a

Control group only data

Study does not report unmet need by domain, only selected or limited unmet need items reported

Response rate not reported

domain (e.g. depression, anxiety, isolation) and then the

economic (59 (20%)) domain (e.g. meeting medical and
basic living expenses). This high prevalence of unmet need
is not reflected, however, in the average number of unmet
needs, which was only 3.2 (SD 2.2; range 012). A similar
pattern has been found elsewhere [53] with the reporting of
the top 20 unmet needs suggesting that the levels of unmet
need are high, yet the mean number of needs was just eight
(out of possible 81). These examples highlight how the
practice of solely reporting the proportion of patients with
any need or just the top rating needs can over estimate the
actual levels of unmet need.
Post treatment, follow-up and survivorship phase
Fourteen studies [3, 5, 7, 8, 12, 13, 16, 20, 24, 38, 45, 52, 62,
65] identified in the review focussed on patients who had
completed treatment for their disease (Table 5). There were
large discrepancies between studies in the length of time
since participants had completed treatment (range from
3 months to more than 5 years). This makes it difficult to
compare studies and generalise findings. Contrasting levels
of unmet need remain a consistent feature at this time point
(activities of daily living (4147%); communication (30%);
economic (513%); information (683%), physical (26
52%), psychosocial (817%), supportive care (3853%)
and sexuality (3334%)). However, it should be noted that
for most domains, the lower prevalence of unmet need was

found to be highest for participants during this post-treatment

phase suggesting that unmet needs are more likely to be
present in a larger number of individuals at this time point.
Cancer-specific unmet needs were frequently investigated post-treatment; however, no clear trends emerged, with
breast [24], melanoma [7] and prostate [65] patients
reporting similar levels of unmet need. However, it should
be noted that cancer-specific assessment, as at the treatment
phase, were more likely to have a higher proportion of
unmet need compared to studies using a general sample of
patients. Predictors of unmet need post-treatment included a
rural locality [7, 13] and individuals who had not attended a
clinical appointment in more than 6 months [7].
The CNQ and the SCNS were again used [7, 24, 65] at
this time point. Documented levels of unmet need were
related to how unmet need was classified and mirror trends
reported within the treatment phase. When some need was
categorised broadly as either low, moderate or high, a
substantial proportion of 198 participants with melanoma
reported unmet needs in all categories (psychological
(58%), information (50%), physical and daily living
(40%), supportive care (38%) and interpersonal communication (30%) [7]. In fact, 28 (14%) and 85 (43%) had some
need for each item. Unsurprisingly, when need was
classified as either moderate or high and only the most
prevalent needs were reported, lower levels of unmet need
in these domains were found (2040%) [24, 65]. Specific
items that were commonly reported are shown in Table 3.

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Support Care Cancer (2009) 17:11171128

Table 5 Cancer patients unmet supportive care needs post-treatment

Author

Sample size Patient cancer

(consent)
characteristics

Reported level of unmet need by domain (proportion or description)

Type

Clinical stage

69 (43%)
229 (53%)
73c
96 (96%)
198 (67%)
206 (62%)
385 (77%)
233 (46%)

Breast
Breast
Gyn
Gyn
Melanoma
Prostate
Prostate
Prostate

Unclear
Mixed
Unclear
I-III
Mixed
Mixed
Unclear
Unclear

Jonker-Pool [38]a
Charles [13]
Ashbury [3]
Interviews
Dale [16]
O'Hare [52]

264 (78%)
362 (63%)
913 (82%)

Mixed
Mixed
Mixed

Mixed
Unclear
Unclear

I (infers unmet need, 45% post discharge)

I=3045%; SC and DS=2441%; P=28%; Psy=3148%;
Sx=59%
PS (infers unmet need, 35% did not receive adequate PS support)
C30%; DS58%; I50%; P and ADL40%; Psy58%; SC38%
DS=915%; I=2634%; P and ADL=26%; Psy=2633%; Sx=3334%
ADL=4147%; DS=54%; P=4752%; SC=53%
I, SC, DS (importance weighted unmet needs score highlight I then SC most
unmet)
I, SC (infers 100% unmet need)
DS=338%; E=513%; I=650%; PS=817%; T=1014%
I (infers unmet need for 3556%)

96 (90%)
63c

Prostate
Mixed

Mixed
Mixed

I=3683%
ADL (unmet needs noted but proportions not reported)

Soderback [62]

102 (84%)

Mixed

Mixed

R (infers unmet need, only 12% of those that needed rehabilitation were
referred)

Surveys
Cawley [12]a
Girgis [24]b
Bourgeois-Law [8]a
Miller [45]
Bonevski [7]
Steginga [65]b
Duke [20]a
Boberg [5]

ADL activities of daily living. C communication, DS disease/study specific, Ec economic, Gyn gynaecologic cancer, I information, P physical, PS
psychosocial, Psy psychological, SC supportive care, Sp spiritual, Sx sexuality, T transport, R rehabilitation
a

Study ascertains retrospective and current unmet needs

Study does not report unmet need by domain, only selected or limited unmet need items reported

Response rate not reported

Miscellaneous time point

In seven studies [1, 11, 18, 46, 61, 64, 66], the specific time
point in the cancer care continuum was unclear or not
reported (Table 6). Unmet needs ascertained included those
within the activities of daily living (5%), information
(31%), psychosocial (135%), supportive care (1416%)
and spirituality (2551%) domains. Unmet needs were
found to be greatest in women, low income earners, those
of low educational status, those residing in rural or remote
areas, those under the age of 45 years and those not in
remission or with advanced disease [11].

Discussion
This systematic review identified 94 articles or reports that
have documented the unmet needs of patients with cancer
during their illness experience. Of these, 57 quantified
unmet need. These studies highlight that people affected by
cancer have a range of unmet needs; however, quantification of these needs presents considerable challenges as does
obtaining a clear idea of the prevalence of need within each

supportive care domain. Prevalence of need was highly

variable in all domains (ranging from 1% to 93%), across
all time points and varied within and between studies. The
most frequently reported unmet needs were those in the
activities of daily living domain (173%), followed by
psychological (1285%), information (693%), psychosocial (189%) and physical (789%). Needs within the
spiritual (1451%), communication (257%) and sexuality
(3363%) domains were least frequently investigated.
Unmet needs in all domains varied at all time points.
Given that needs were ascertained using a variety of different
methods and only one study prospectively measured needs
over time, it is not possible to assess the degree to which
needs change along the cancer illness trajectory. However,
some trends emerged from the data. For example, the highest
levels of unmet need for most domains were identified
during treatment. Furthermore, the prevalence of unmet need
for each domain had the largest variation during the
treatment phase compared to any other time point of the
cancer illness. However, for most domains, the lowest
prevalence of unmet need was found to be highest for
patient post-treatment. This implies that unmet needs are
more likely to be found in a larger proportion of people at

Support Care Cancer (2009) 17:11171128

1125

Table 6 Cancer patients unmet supportive care (phase of the journey not defined)
Author

Surveys
Silveria [61]
Moadel [46]
Soothill [64]
Sullivan [66]
Interviews
Davis [18]b
American Cancer Society [38]c
Canadian Cancer Society [11]c

Sample size Patient cancer

(consent)
characteristics

Reported level of unmet need by domain (proportion or description)

Type

Clinical stage

30a
248a
295 (29%)
166a

Mixed
Mixed
Mixed
Unclear

Mixed
Mixed
Mixed
Unclear

ADL=5%
Sp=2551%
PS=135%
PS=19%

544 (65%)
810a
2000a

Breast
Mixed
Mixed

I-II
Mixed
Mixed

I=31%; SC=1416%
PS=28%;
ADL, Ec, I, P, PS (unmet needs noted but proportions not reported)

ADL activities of daily living, Ec economic, I information, P physical, PS psychosocial, SC supportive care, Sp spiritual
a

Response rate not reported

Retrospective assessment of unmet needs

Study ascertains retrospective and current unmet needs

this time point. These trends however are likely due to the
fact a greater number of studies have been conducted at
treatment and post-treatment for people at these time points
compared to other stages of the cancer illness. This review
has highlighted a paucity of evidence regarding the unmet
needs of people newly diagnosed with cancer with only three
studies identified.
Anxiety and fears about the cancer spreading or returning
were the most commonly identified psychosocial issues,
particularly during the treatment and post-treatment phases.
Patients were concerned about how those closest to them
were coping with their disease. Adequate information about
managing the side effects of treatment were also important
areas where information provision was found to be inadequate. Practical assistance within the home such as cooking,
shopping and cleaning were also regularly noted as areas
where improvements could be made at the treatment and
post-treatment stage. Predictors of unmet need were also
variable; however, there does appear to be evidence to
suggest that patients who are geographically isolated from
health services and those lacking social support were more
likely to have higher levels of unmet need [13, 17, 24, 27,
49, 61, 76]. This suggests that ongoing support when
patients are not in direct contact with the health system or
are living in the community, receiving treatment or are posttreatment are currently areas where supportive care is
deficient. There is also evidence to suggest that people with
more advanced stages of disease or with poor health status
are more likely to have unmet needs [11, 14, 41, 60, 64].
The heterogeneous samples in terms of patients cancer
site and stage used within most studies make interpretation
difficult. Broad, heterogeneous samples often utilised for
pragmatic reasons provide a valuable picture of the chal-

lenges facing cancer patients in general but may overlook

disease and stage specific issues. Li et al. [40] for example
found that not only did lung cancer patients have a
significantly higher burden of unmet needs, but a diagnosis
of lung cancer was found to predict unmet psychological and
daily living needs. Other studies may also suggest that unmet
needs are tumour-specific [41]. In fact, studies that investigated cancer site-specific unmet needs during the treatment
and post-treatment phase generally reported higher levels of
unmet need compared to studies that used mixed cohorts of
patients. These results suggest that assessments should be
conducted with a homogenous sample of patients and could
provide a more detailed analysis of tumour-specific unmet
needs.
The current review has highlighted the difficulties in
gauging levels of unmet needs given the varied study
questionnaires and differences in the classification of unmet
need. The classification of need for additional support is a
major barrier in trying to assess questionnaires that report
unmet need. For example, for some studies that utilised the
SCNS, the prevalence of unmet need can range from 20%
to 40% when responses of moderate or high unmet need
are included [24, 51, 56, 65] but increases to between 50%
and 65% when a low need is also considered indicative of
an unmet need [7, 22, 41]. Variability in which items from
surveys and interviews are actually reported adds to this
confusion. Some studies list the highest rated items, whilst
others cite that a respondent has an unmet need in a given
domain even if only one item within that domain is found
to be unmet. Reporting the combined prevalence of any
item within a single domain has the potential to overrepresent the actual level of unmet need. This is highlighted
when the mean number of needs are reported which can be

1126

low even when the proportion of individuals with a

particular need is high. Consistent reporting methods of
individual surveys are needed to facilitate interpretation of
studies assessing unmet need. Recent guidelines for
calculating standardised scores and classification of unmet
need for the instruments such as the SCNS is an
encouraging strategy to address these problems [44].
There is the potential for selection bias within individual
studies in that a large proportion excluded non-Englishspeaking patients and those who are too unwell. This is
likely to affect the generalisability of results. Furthermore,
samples were often small and drawn from single centres,
limiting generalisability. It is likely that some studies that
report unmet need will have been missed in this review due
to poorly standardised taxonomy and nomenclature of
unmet need within bibliographic databases. However, given
the broad terms employed in the search strategy and that
over 22,000 articles were screened, it is hoped that the
number of articles missed would be small. It should be
noted that whilst undertaking this review further articles
have been published [3032, 34], including a series of
studies by Hodgkinson et al. [3032] which have investigated the unmet needs of cancer survivors.
In conclusion, this systematic review identified 94
articles that reported cancer patients supportive care unmet
needs of which 57 quantified the prevalence of unmet need.
Prevalence of unmet need, their trends and predictors are
highly variable in all domains at all time points of the
cancer illness. This suggests that relying on data from
elsewhere to plan cancer services or interventions to reduce
unmet need may not be appropriate. Unmet needs appear to
be highest during the treatment and post-treatment phase;
however, this is likely due to the fact this is where current
efforts to identify unmet needs have been directed.
Furthermore, the focus of studies at a single time point
during the illness trajectory does not take into account how
unmet needs may change over time. Methodological
inconsistencies further compound this issue. To improve
understanding of unmet need, context-specific, welldesigned, prospective studies are needed. Such studies
could investigate the impact of early assessment and
management of unmet need on subsequent patient outcomes. Standardisation of measures and reporting methods
would also benefit future interventional research to identify
how best to address the unmet supportive care needs of
people with cancer.

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