Boyes et al.

BMC Cancer 2012, 12:150

RESEARCH ARTICLE Open Access

Prevalence and correlates of cancer survivors’

Abstract
Background: An understanding of the nature and magnitude of the impact of cancer is critical to planning how
best to deliver supportive care to the growing population of cancer survivors whose need for care may span many
years. This study aimed to describe the prevalence of and factors associated with moderate to high level unmet
supportive care needs among adult cancer survivors six months after diagnosis.
Methods: A population-based sample of adult cancer survivors diagnosed with one of the eight most incident
cancers in Australia was recruited from two state-based cancer registries. Data for 1323 survivors were obtained by
self-report questionnaire and linkage with cancer registry data. Unmet needs were assessed by the 34-item
Supportive Care Needs Survey (SCNS-SF34). The data were examined using chi-square and multiple logistic
regression analyses.
Results: A total of 444 (37%) survivors reported at least one ‘moderate to high’ level unmet need and 496 (42%)
reported ‘no need’ for help. Moderate to high level unmet needs were most commonly reported in the
psychological (25%) and physical aspects of daily living (20%) domains. The five most frequently endorsed items of
moderate to high unmet need were concerns about the worries of those close to them (15%), fears about the
cancer spreading (14%), not being able to do the things they used to do (13%), uncertainty about the future (13%)
and lack of energy/tiredness (12%). Survivors’ psychological characteristics were the strongest indicators of unmet
need, particularly caseness for anxious preoccupation coping which was associated (OR = 2.2-5.9) with unmet need
for help across all domains.
Conclusions: Unmet supportive care needs are prevalent among a subgroup of survivors transitioning from active
treatment to survivorship, although lower than previously reported. In addition to coping support, valuable insight
about how to prevent or address survivors’ unmet needs could be gained by examining the substantial proportion
of survivors who report no unmet needs.

Background and support needs, and the extent to which these are met
Cancer is increasingly recognised as a chronic illness, with by current services is critical to guiding where to focus
the number of people living with a history of the disease limited healthcare resources in order to deliver care that is
expected to triple to 75 million people worldwide in 2030 responsive to the needs of the growing population of can-
[1]. While most survivors adjust well over time [2], a mi- cer survivors.
nority are at risk of adverse physical [3,4], psychological There are a number of different approaches for more
[5,6] and social [7,8] effects which may emerge soon after fully understanding survivors’ cancer experiences and
diagnosis and treatment, or in the ensuing years. Detailed quantifying their outcomes including assessment of quality
knowledge about the issues faced by survivors, their care of life, satisfaction with health care, and needs assessment
[9,10]. Needs assessment not only identifies needs and
* Correspondence: [email protected] their importance as perceived by the survivor, but also the
1
Priority Research Centre for Health Behaviour, University of Newcastle & extent to which they are met [10]. The key strength of this
Hunter Medical Research Institute, Newcastle, Australia
approach is that it enables resources to be focused on the
Full list of author information is available at the end of the article

© 2012 Boyes et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.
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issues that survivors have expressed they want addressed late treatment to early survivorship phase of the cancer
in order to achieve optimal wellbeing. continuum.
Increasing interest in the application of needs assess-
ment to cancer care has resulted in the development of a Participants & procedures
number of valid and reliable cancer-specific tools asses- The sample was recruited from new notifications to the
sing a comprehensive range of needs [9,11] and a grow- two largest state-based cancer registries in Australia which
ing literature describing their administration across a together account for 60% of all new cancer cases diagnosed
variety of settings, stages in the cancer journey, and [26]. Eligibility was restricted to those who were (1) diag-
populations. A recent systematic review found that while nosed in the previous six months with their first primary
the prevalence of unmet need among cancer survivors cancer of one of the top eight incident cancer types in
varied from 30% to 50% across studies, it is typically Australia (prostate, colorectal, female breast, lung, melan-
highest in the psychological, health information, and oma, non-Hodgkin’s lymphoma, leukaemia, head & neck);
physical aspects of daily living domains [12]. While evi- (2) aged between 18 and 80 years and living in the state of
dence about the factors that influence survivors’ unmet New South Wales (NSW) or Victoria (VIC) at diagnosis;
needs is inconsistent, a number of studies have found (3) considered by their physician to be aware of their diag-
that those who are not in remission [13-15], are psycho- nosis, physically and mentally capable of participating in
logically distressed [14,16-18] and geographically isolated the study, and sufficiently proficient in English to complete
[15,19] are more likely to report unmet needs. However, a questionnaire; and (4) alive.
the literature is plagued by a lack of consistency in the The recruitment and survey methodology have been
methods used to measure, classify and report unmet described in detail previously [22]. Briefly, eligible potential
needs, making it difficult to compare between studies participants whose physician had given active (NSW) or
and to generalise findings [12]. passive (VIC) consent for them to be contacted about the
The seminal publication, From Cancer Patient to Cancer study received a mailed package from the registries. Eli-
Survivor: Lost in Transition [20], focused the attention of gible survivors who agreed to the registries passing on
the cancer control community on the survivorship stage of their contact details to the researchers were sent a self-
the cancer trajectory with a series of recommendations to administered questionnaire to complete. Non-responders
accelerate progress in this area, including the need for were sent a reminder questionnaire three weeks later and
large-scale studies using valid and reliable measures with received a reminder phone call after a further three weeks.
diverse cancer populations to be conducted as a priority. A three week interval was used to allow adequate time for
Furthermore, a recent review [21] identified unmet sup- survivors to receive, respond to and return the mailed
portive care needs as one of four main gaps in knowledge questionnaire prior to receiving a reminder. Return of the
about the problems faced by adult cancer survivors. To questionnaire to the research team indicated voluntary
guide care planning and help inform future health service consent to participate. The Human Research Ethics Com-
delivery, the current study aimed to (1) describe the preva- mittees of the University of Newcastle (H-199-1101), Can-
lence of adult cancer survivors’ supportive care needs, cer Institute NSW and Cancer Council Victoria approved
overall and by cancer type, at six months post-diagnosis; the study.
(2) identify the most prevalent items of moderate to high
level unmet need and (3) identify the individual, disease, Measures
health behaviour, psychological and social factors asso- Data were collected by self-administered questionnaire
ciated with survivors reporting moderate to high level un- with additional clinical information obtained from the
met psychological, health systems and information, Cancer Registries for each participant.
physical and daily living, patient care and support, and
sexuality needs. Outcome measure
Supportive care needs were measured by the 34-item
Methods Supportive Care Needs Survey (SCNS-SF34) which
This paper is based on Time 1 (T1) data collected at six assesses cancer-specific perceived needs across five factor
months post-diagnosis from survivors participating in analytically derived domains: psychological (10 items),
the population-based longitudinal Cancer Survival Study health systems and information (11 items), patient care
(CSS). The study protocol and aspects of the study find- and support (5 items), physical and daily living (5 items),
ings have been reported in detail elsewhere [22,23]. and sexuality (3 items) [27]. For each item, respondents
While the term cancer ‘survivor’ has varied definitions indicate their level of need for help over the last month
[24], this study considers ‘survivor’ to encompass anyone as a result of having cancer on a five point Likert scale
diagnosed with cancer, from the time of diagnosis to the with the following response options: 1 = no need, not ap-
end of life [25]. This paper focuses on survivors in the plicable; 2 = no need, satisfied; 3 = low need; 4 = moderate
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need; and 5 = high need. For each domain, survivors were before and since the cancer diagnosis. Coping was
categorised as having a ‘moderate to high’ level of need if assessed by the 21-item Mini Mental Adjustment to
they selected response options 4 or 5 to at least one item Cancer Scale (Mini-MAC) which measures five cancer-
in the domain or ‘no to low’ need if they selected re- specific coping strategies: helplessness-hopelessness, anx-
sponse options 1, 2 or 3 to all items in the domain [28]. ious preoccupation, fighting spirit, cognitive avoidance
The SCNS-SF34 has high internal consistency with and fatalism [35]. The mini-MAC has demonstrated reli-
Cronbach’s alpha of at least 0.86 for each subscale, and is ability with Cronbach alpha coefficients for each subscale
moderately correlated with the Hospital Anxiety and De- ranging from 0.62–0.88. Raw scores for each subscale
pression Scale, Distress Thermometer and Quality of Life were standardised from 0 to 100 [35] and survivors who
Questionnaire-Core 30 (QLQ-C30) [27]. Furthermore, scored in the top 16% of each distribution were classified
cancer patients have reported a preference for the as a ‘case’ on that specific coping strategy [36].
SCNS-SF34 over the QLQ-C30, Functional Assessment
of Cancer Therapy-General and Kingston Needs Assess- Social
ment–Cancer as a strategy for conveying their needs to Social support was assessed by the MOS Social Support
health care providers [29]. Survey (MOS − SSS) which measures four domains of
functional support: emotional/informational, tangible, af-
Study factors fectionate, and positive social interaction [37]. Raw sub-
Individual scale scores were standardised from 0 to 100 and
Age at diagnosis and sex were obtained from the cancer survivors who scored in the bottom one-third of each
registry. Current marital status, highest level of education distribution were classified as having ‘low’ availability of
completed, health insurance coverage, current employment that particular type of social support (Sherbourne, per-
situation, geographical location, size of household, and sonal communication). The survey has high internal
presence of physical co-morbidities were obtained by consistency with alpha coefficients exceeding 0.91 for
questionnaire. each subscale and demonstrated validity with the chronic
illness population [37].
Disease and treatment
Primary cancer type and spread of disease at diagnosis Statistical methods
were obtained from the cancer registry, with survivors’ Due to small numbers, data from survivors diagnosed
cancer categorised as ‘early/less progressed’ (in-situ or with non-Hodgkin’s lymphoma or leukaemia were com-
localised; grade 1 or 2; T1 or T2), ‘late/more progressed’ bined and categorised as ‘haematological’ cancer. The
(invasion of adjacent organs, regional nodes or distant proportion of survivors who reported either ‘no needs’
metastases; grade 3 or 4; not T1) or ‘not applicable’ (ie. selected response option 1 or 2 to all 34 items), ‘low
(haematological cancers). Extent of disease at six months needs’ (ie. selected response option 3 to at least one
post-diagnosis, and cancer treatments received in the last item, but did not select response option 4 or 5 to any
month were obtained by questionnaire. items) and ‘moderate to high needs’ (ie. selected re-
sponse option 4 or 5 to at least one item) was calculated
Health behaviours overall and by cancer type, with 95% confidence inter-
Seven questionnaire items adapted from existing measures vals. The association between cancer type with reporting
assessed health behaviors: two items assessed smoking be- ‘no needs’, ‘low needs’ and ‘moderate to high needs’ was
examined using chi-square analyses. For each domain,
havior, with participants classified as ‘current’, ‘former’ or
the proportion of survivors who reported ‘moderate to
‘never smoker’ [30]; two items assessed alcohol consump-
high needs’ versus ‘low or no needs’ was calculated with
tion [31] and participants who consumed more than two
95% confidence intervals. The proportion of survivors
standard drinks on any day were classified as being at
who endorsed each SCNS-SF34 item at either a ‘moder-
‘increased lifetime risk of harm’ from alcohol related injury ate’ or ‘high’ level was calculated with 95% confidence
or disease [32]; and three items assessed physical activity intervals and the ten most prevalent items and their cor-
[33] with participants classified as ‘sufficiently active’ (at responding domain identified. Chi-square analyses exam-
least 150 minutes of physical activity per week), ‘insuffi- ined the association between survivors’ individual,
ciently active’ (participating in some activity but not enough disease, health behaviour, psychological and social char-
in total time) or ‘sedentary’ (no physical activity) [34]. acteristics with ‘moderate to high needs’ versus ‘low or
no needs’ for each domain. Multiple logistic regression
Psychological analyses were then conducted to examine factors asso-
Two questionnaire items assessed treatment for mental ciated with ‘moderate to high needs’ while adjusting for
health illness (eg. depression, anxiety, schizophrenia) potential confounders. Variables with a p-value ≤0.2 on
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univariate analyses were included in a backward logistic (n = 207) had five or more ‘moderate to high’ needs.
regression model for each domain. Variables were There was significant variation across cancer types in the
removed from the model if they had a p-value <0.1 on percentage of survivors who reported unmet needs
the likelihood ratio test; those with a p-value ≤0.05 were (χ2 = 91.39; df = 12; p < 0.001). ‘Moderate to high’ level
considered statistically significant. unmet needs were most common amongst survivors of
lung cancer with more than half (60%; 95% CI: 51%-69%)
Sample size endorsing at least one item. Conversely, almost two-
The registries were required to recruit a quota of 1660 thirds (65%; 95% CI: 58%-72%) of melanoma survivors
eligible survivors who consented to being contacted reported ‘no need’ for help with all items.
about the study. Based on previous experience [6], we At the domain level, 318 (25%; 95% CI: 23%-27%) sur-
estimated that 80% of survivors would return a com- vivors reported unmet psychological needs, 251 (20%;
pleted survey, resulting in a sample size of approximately 95% CI: 18%-22%) reported unmet physical aspects of
1320 at T1. Assuming a prevalence of moderate to high daily living needs, and 232 (18%; 95% CI: 16%-20%)
needs of 20%, a sample of this size would allow the pro- reported unmet health systems and information needs at
portion of survivors with unmet needs to be estimated a ‘moderate to high’ level. Only 167 (13%; 95% CI: 11%-
with 95% confidence intervals within ± 3%, and provide 15%) and 103 (8%; 95% CI: 7%-9%) survivors respectively
90% power to detect differences of 7% between categor- reported ‘moderate to high’ level unmet need for help
ies of study factors associated with moderate to high with sexuality, and patient care and support domains.
needs at the 5% significance level.
Most prevalent ‘moderate to high’ level unmet supportive
Results care needs
Sample The 10 highest ranked items that survivors reported a
Of the 3877 potential participants assessed for study eli- ‘moderate to high’ level of need for help with are shown
gibility, 3315 were deemed eligible and of these, 1691 in Table 2. Overall, individual items were endorsed by
(51%) consented to being contacted about the study by relatively few (≤15%) survivors. The highest ranked items
the researchers. A total of 1360 eligible survivors were concerns about the worries of those close to you
returned a T1 survey (41% response rate at T1). Thirty (15%), fears about the cancer spreading (14%), not being
seven participants who returned their T1 survey more able to do the things they used to do (13%), uncertainty
than 9 months after diagnosis were excluded from ana- about the future (13%), and lack of energy/tiredness
lyses. The 1323 survivors included in these analyses were (12%). Half of the top 10 needs items were from the psy-
surveyed at a median of 6 months after diagnosis (SD = 1 chological domain, three were from the physical aspects
month, minimum 4 months, maximum 9 months) and of daily living domain and the remaining two items were
their median age was 63 years (SD = 11 years; minimum from the sexuality domain.
18 years, maximum 80 years). More than half of the par-
ticipants (59%) were male, about half were diagnosed Factors associated with ‘moderate to high’ level unmet
with early stage disease (52%), the most common diagno- need
sis was prostate cancer (26%), almost two-thirds (62%) The individual, health behaviour, disease, treatment, psycho-
were in remission at the time of survey completion and logical and social characteristics associated with survivors
72% had not received any active treatment in the last reporting ‘moderate to high’ level unmet needs by domain
month. While the study sample reflected the national are shown in Tables 3, 4 and 5. Domains are displayed side-
profile [24] for the top eight incident cancers diagnosed by-side for ease of comparison.
in 2005 in terms of gender and age, survivors of colorec-
tal cancer appeared to be under-represented and haem- Individual
atological and head and neck cancers over-represented. Age at diagnosis and current employment status were
Participant characteristics have been reported in detail associated with multiple domains of unmet need (see
elsewhere [22]. Table 3). The odds of reporting sexuality, and health sys-
tem and information needs increased with decreasing
Prevalence of supportive care needs age. Compared to those who were retired, survivors who
As shown in Table 1, 496 (42%, 95% CI: 39%-45%) survi- were currently not working (on leave, student, un-
vors reported ‘no need’ for help with all of the 34 items employed) or doing unpaid work (volunteer, household
assessed. A total of 444 (37%; 95% CI: 34%-40%) survi- duties) had about twice the odds of reporting physical
vors reported having at least one ‘moderate to high’ level aspects of daily living and sexuality needs as those who
unmet supportive care need and of these, 53% (n = 237) were retired. Age was marginally non-significantly asso-
had one to four ‘moderate to high’ needs and 47% ciated with psychological need. Married or defacto
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Table 1 Prevalence of supportive care needs at six months post-diagnosis by cancer type
Total* Prostate Melanoma Breast Blood Colorectal Lung Head & neck
(N = 1187) (n = 309) (n = 188) (n = 186) (n = 164) (n = 145) (n = 108) (n = 87)
n% n% n% n% n% n% n% n%
(95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI)
No needs† 496 134 122 56 54 66 29 35
42 (39–45) 43 (37–49) 65 (58–72) 30 (23–37) 33 (26–40) 46 (38–54) 27 (19–35) 40 (30–50)
Low needs{ 247 58 33 47 38 31 14 26
21 (19–23) 19 (15–23) 17 (12–22) 25 (19–31) 23 (17–29) 21 (14–28) 13 (7–19) 30 (20–40)
Moderate to high needs} 444 117 33 83 72 48 65 26
37 (34–40) 38 (33–43) 17 (12–22) 45 (38–52) 44 (36–52) 33 (25–41) 60 (51–69) 30 (20–40)
* includes those with no missing items across all domains.
†
selected ‘no’ need for help to all 34 items.
{
selected ‘low’ level need for help to at least one item, but did not select ‘moderate’ or ‘high’ need to any item.
}
selected ‘moderate’ or ‘high’ level need for help to at least one item.

survivors had three times the odds of unmet sexuality needs, while lung, breast and haematological cancer sur-
needs compared to those who were single or widowed. vivors had at least two times the odds of unmet physical
and daily living needs. Survivors who received chemo-
therapy in the last month had higher odds of unmet psy-
Health behaviour
chological, and physical and daily living needs than those
Physical activity was the only health behaviour associated
who didn’t receive chemotherapy in the last month.
with moderate to high level unmet needs (see Table 3).
The odds of reporting unmet psychological, and physical
and daily living needs increased with decreasing levels of
Psychological
physical activity.
Coping strategy and mental health treatment were asso-
ciated with multiple domains of unmet need (see Table 5).
Disease and treatment Survivors who engaged in anxious preoccupation coping
Cancer status, cancer type and having received chemo- had two to six times higher odds of reporting unmet
therapy in the last month were associated with multiple needs across all domains compared to survivors who did
domains of unmet need (see Table 4). Compared to sur- not use this coping strategy. Survivors who used help-
vivors in remission, those not in remission (stable, recur- less-hopeless coping had about twice the odds of report-
rent, metastatic disease) had about twice the odds of ing unmet psychological, health system and information,
unmet health system and information, and patient care and patient care and support needs compared to those
and support needs. Compared with survivors of melan- who didn’t use this strategy, while those who used cogni-
oma, survivors of all other cancer types except head and tive avoidance coping had higher odds of reporting un-
neck had at least four times the odds of unmet sexuality met psychological needs compared to those who didn’t

Table 2 Ten most prevalent ‘moderate’ or ‘high’ level unmet supportive care needs
Rank SCNS-SF34 item Number (%) moderate or high needs Domain
1 Concerns about the worries of those close to you 192 (15) Psychological
2 Fears about the cancer spreading 185 (14) Psychological
3 Not being able to do the things you used to do 169 (13) Physical/ daily living
4 Uncertainty about the future 168 (13) Psychological
5 Lack of energy/tiredness 157 (12) Physical/ daily living
6 Changes in your sexual relationships 140 (11) Sexuality
7 Changes in sexual feelings 139 (11) Sexuality
8 Work around the home 137 (11) Physical/ daily living
9. Worry that the results of treatment are beyond your control 128 (10) Psychological
10 Feeling down or depressed 120 (9) Psychological
Total number of observations for each item ranges from 1292–1302 due to missing values.
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Table 3 Individual and health behaviour characteristics associated with moderate to high level unmet needs by
domain*
Psychological Physical & daily Sexuality Health system Patient care
living & information & support
p-value p-value p-value p-value p-value
Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR
(95% CI) (95% CI) (95% CI) (95% CI) (95% CI)
Individual
Sex 0.089
Female 0.56 (0.29-1.1)
Male 1.00
Marital status <0.001
Married/ defacto 3.0 (1.6-5.6)
Single/ widowed 1.00
Age at diagnosis 0.06 0.002 0.008
49 and younger 1.7 (0.98-2.8) 4.4 (1.8-10.6) 2.9 (1.5-5.5)
50-59 1.1 (0.67-1.8) 4.3 (2.0-9.1) 2.5 (1.3-4.6)
60-69 0.88 (0.55-1.4) 2.7 (1.5-5.2) 2.2 (1.3-3.9)
70 and older 1.00 1.00 1.00
Current employment <0.001 0.005
Paid work 0.78 (0.51-1.2) 0.92 (0.54-1.6)
Not working 1.8 (1.2-2.8) 2.0 (1.1-3.4)
Retired 1.00 1.00
Health behaviour
Physical activity 0.05 <0.001
Sedentary 1.7 (1.1-2.7) 2.5 (1.6-4.0)
Insufficient 1.5 (0.99-2.1) 1.8 (1.2-2.7)
Sufficient 1.00 1.00
* also adjusted for disease, treatment, psychological and social characteristics as reported in Tables 4 and 5.
OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test.

use this strategy. Compared to survivors without a his- higher odds of unmet health system and information needs
tory of mental health treatment, those who had been (see Table 5).
treated for such problems before their cancer diagnosis
had around twice the odds of unmet physical and daily Discussion
living, and patient care and support needs, while those This study found that six months after a cancer diagno-
who had been treated for such problems since their can- sis, about one-third (37%) of survivors reported one or
cer diagnosis had almost three times higher odds of un- more items of moderate or high level unmet need, while
met psychological needs. almost two thirds (63%) reported either no or low level
unmet needs. The most commonly reported moderate to
Social high level unmet needs were from the psychological and
Compared to those with some affectionate support, survi- physical and daily living domains. This is consistent with
vors who perceived they had low levels of affectionate sup- other recent needs assessments conducted with samples
port had lower odds of health system and information, and of cancer survivors at the end of treatment [17], in early
higher odds of patient care and support needs. Compared phases of survivorship [15,18] and in long-term survivor-
to survivors with some positive social interaction, survivors ship [14,16]. However, previous studies [13,15,17,18]
who perceived that they had low levels of positive social found between 43%-60% of survivors reported at least
interaction had higher odds of unmet sexuality, and health one moderate or high level unmet need, compared to
system and information needs. Survivors who perceived 37% of survivors in this study. Similarly, unlike earlier
low levels of emotional/informational support also had studies which found the most prevalent item of moderate
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Table 4 Disease and treatment characteristics associated with moderate to high level unmet needs by domain*
Psychological Physical Sexuality Health system Patient care
& daily living & information & support
p-value p-value p-value p-value p-value
Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR
(95% CI) (95% CI) (95% CI) (95% CI) (95% CI)
Disease
Cancer status <0.001 0.001
Not remission 2.0 (1.4-2.9) 2.2 (1.4-3.5)
Remission 1.00 1.00
Cancer type 0.003 <0.001
Breast 2.3 (1.1-4.6) 9.0 (2.5-32.2)
Colorectal 2.1 (0.97-4.5) 6.4 (1.7-24.3)
Blood 2.2 (1.1-4.5) 4.3 (1.2-15.5)
Head neck 1.0 (0.41-2.5) 1.1 (0.21-6.1)
Lung 4.1 (2.0-8.7) 5.8 (1.6-21.8)
Prostate 1.7 (0.86-3.4) 23.1 (6.7-80.4)
Melanoma 1.00 1.00
Treatment
Surgery 0.093
Yes 2.1 (0.89-4.8)
No/DK 1.00
Chemotherapy 0.005 0.023
Yes 1.8 (1.2-2.8) 1.6 (1.1-2.5)
No/DK 1.00 1.00
Radiotherapy 0.05
Yes 1.6 (0.99-2.7)
No/DK 1.00
Other 0.062
Yes 2.3 (0.96-5.7)
No/DK 1.00
* also adjusted for individual, health behaviour, psychological and social characteristics as reported in Tables 3 and 5.
OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test; DK = don’t know.

or high unmet need occurred among 27-40% of recent survivors’ supportive care needs, as measured by the
survivors [13,17,18], the most commonly reported item SCNS-SF34, are relatively well met.
of unmet need in this study was endorsed by only 15% of Due to the size and composition of the study sample,
survivors. we were able to directly compare the prevalence of sup-
The prevalence of unmet need reported by survivors portive care needs between seven common cancer types
in this study is clearly lower than previously reported, in Australia [26]. This bivariable analysis revealed signifi-
despite using the same validated instrument, and clas- cant variation across cancer types, with particularly low
sification of unmet need. This may be because earlier levels of unmet need reported by survivors of melanoma,
studies of cancer survivors diagnosed with a diversity 65% of whom reported no items of unmet need. This is
of cancer sites did not use population-based samples fitting with our anecdotal experience whereby partici-
[13,17,18] and are therefore more susceptible to selec- pants who were survivors of melanoma often questioned
tion bias. In contrast, we used the two largest state- the legitimacy of their contribution to the study as they
based cancer registries in Australia to assemble a perceived themselves to have suffered less than survivors
population-based sample of survivors in the very early of other cancer types, and therefore less deserving of at-
stages of cancer survivorship. Given that the study tention. Australia has the world’s highest incidence rate
sample is generally representative of the source popu- of melanoma; it is typically identified at early stages
lation, we are confident in our findings that most when simple treatment such as surgery will achieve a
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Table 5 Psychological and social characteristics associated with moderate to high level unmet needs by domain*
Psychological Physical Sexuality Health system Patient care
& daily living & information & support
p-value p-value p-value p-value p-value
Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR
(95% CI) (95% CI) (95% CI) (95% CI) (95% CI)
Psychological
Anxious preoccupation <0.001 <0.001 <0.001 <0.001 <0.001
Case 5.9 (4.0-8.7) 2.2 (1.5-3.2) 3.4 (2.2-5.3) 3.3 (2.2-5.1) 3.1 (1.8-5.2)
No case 1.00 1.00 1.00 1.00 1.00
Helpless hopeless <0.001 0.016 0.002
Case 2.2 (1.5-3.3) 1.7 (1.1-2.7) 2.3 (1.3-3.8)
No case 1.00 1.00 1.00
Cognitive avoidance 0.02 0.049
Case 1.5 (1.1-2.1) 1.5 (1.0-2.3)
No case 1.00 1.00
Mental health <0.001 0.032 <0.001
help before cancer
Yes 2.1 (1.4-3.2) 1.7 (1.0-2.8) 2.5 (1.5-4.2)
No 1.00 1.00 1.00
Mental health <0.001
help since cancer
Yes 2.9 (1.6-5.2)
No 1.00
Social
Affectionate support 0.020 0.003
Low 0.47 (0.25-0.89) 2.1 (1.3-3.4)
Some 1.00 1.00
Positive 0.05 0.014 0.002
social interaction
Low 1.4 (0.99-2.0) 1.7 (1.1-2.5) 2.6 (1.4-4.8)
Some 1.00 1.00 1.00
Emotional/ informational 0.04 0.002
Low 1.4 (1.0-2.1) 2.2 (1.3-3.6)
Some 1.00 1.00
* also adjusted for individual, health behaviour, disease and treatment characteristics as reported in Tables 3 and 4.
OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test.

good prognosis [38]. It is possible that the omission of disease, health behaviour, psychological and social
melanoma survivors from the sample composition of factors, cancer type was found to be significantly
previous studies [17,18] may have contributed to their associated with moderate to high level unmet phys-
higher prevalence of unmet need compared to this study. ical and daily living, and sexuality needs only. In par-
In contrast, the highest levels of unmet need were ticular, survivors of lung cancer had the highest odds
reported by survivors of lung cancer, with 60% reporting of reporting unmet physical and daily living needs,
at least one item of moderate or high level need. Given while survivors of prostate cancer had extremely high
the high level of burden associated with lung cancer in odds of reporting unmet sexuality needs. These find-
terms of poor prognosis, treatment side effects and de- ings suggest that the type of unmet need experienced
clining physical health, this finding is not surprising. by survivors does not routinely differ between cancer
Subgroups of survivors with domain-specific and types. Rather, the notion of cancer site- specific un-
widespread unmet needs were identified. After met needs appears to apply to only a few explicit
adjusting for a comprehensive range of individual, dimensions of unmet need.
Boyes et al. BMC Cancer 2012, 12:150 Page 9 of 10
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Consistent with previous studies, not being in remis- questionnaire into other languages and may have
sion was associated with unmet health system and infor- resulted in an underestimate of the prevalence of un-
mation, and patient care and support needs; this is not met needs given that language barriers have been
surprising given this subgroup of survivors is likely to be associated with poorer access to health care services.
receiving intermittent treatment and symptom manage- Our outcome measure, the SCNS-SF34, is a well-vali-
ment. While almost three quarters of survivors reported dated tool for assessing multiple dimensions of sup-
not receiving any active treatment in the last month, we portive care need and was developed with diverse
did not assess if participants had completed all active samples of individuals diagnosed with cancer in terms
treatments given the changeable and uncertain nature of of cancer type and time since diagnosis [27]. However,
adjuvant treatment regimes. While each treatment was it is possible that the SCNS-SF34 may not fully cap-
considered separately, having received chemotherapy in ture the unique needs of cancer survivors in the late
the last month was the only treatment associated with treatment to early survivorship phase of care, and
higher odds of reporting unmet needs. Interestingly, therefore this study may underestimate the prevalence
physical activity was the only health behaviour associated of unmet need reported by survivors at six months
with unmet needs, with sedentary survivors reporting post-diagnosis. Since this study commenced, two can-
higher odds of unmet psychological, and physical and cer survivor-specific needs assessment tools [41,42]
daily living needs. Although 37% of the sample resided in have been developed and should be considered for
regional or remote areas, our results did not support the use in future studies.
findings from previous studies of an association between
rural location and unmet needs. On account of the range Conclusions
of study factors examined in this study, a number of About one-third of cancer survivors in the transition from
associations were established for the first time. Low late treatment to early survivorship had moderate to high
levels of social support and maladaptive coping styles levels of unmet need, particularly in the psychological and
were associated with multiple domains of unmet need. daily living domains. Our findings directly inform health
Notably, survivors who were identified as a case on anx- care professionals and organisations involved in the
ious preoccupation coping had more than twice the odds provision of survivorship care about the actions, resources
of reporting unmet needs across all five domains. While and services most needed by subgroups of survivors. Our
causation cannot be inferred, the new associations iden- findings also suggest that coping support interventions may
tified in this study are particularly valuable because social have the potential to contribute to the prevention or reduc-
support and coping style are potentially amenable to tion of survivors’ unmet needs across all domains. How-
intervention. In particular, attention could be directed ever, it is important not to overlook the finding that 63% of
towards exploring the contribution that targeted coping survivors in this study reported no or low level unmet
interventions focusing on anxiety and helplessness, could needs at six months post-diagnosis and for whom current
make towards the prevention of or reduction in survi- care appears to adequately meet their needs. On the basis
vors’ unmet needs across a number of domains. that a valuable new perspective about how to prevent or
reduce cancer survivors’ unmet needs could be gained from
Strengths and limitations those with no unmet needs, future research should seek to
While previous needs assessments have also included identify and better understand this subgroup of survivors.
a diversity of recent cancer survivors [13,17,18], the
population-based sampling method used in this study Competing interests
is a major strength as it increases the generalisability The authors declare that they have no competing interests.
of the results. In Australia, the notification of cancer
to the cancer registry is a statutory requirement under Acknowledgements
The research on which this paper is based was conducted as part of the
the state and territory Public Health Acts. Indices of Cancer Survival Study led by Allison Boyes and Afaf Girgis. Funding for
registry data quality demonstrate that the level of case this study was provided by the National Health & Medical Research
ascertainment is high and the data collected are ac- Council (ID 252418), Cancer Council NSW, Hunter Medical Research
Institute, Honda Foundation and University of Newcastle. The Victorian
curate [39]. However, the overall response rate was Cancer Registry (Cancer Council Victoria) and NSW Central Cancer
41% (1360/3315 eligible individuals) and may raise Registry (NSW Department of Health and Cancer Institute NSW) assisted
concerns about response bias. While this response with case recruitment. Our sincere thanks to the cancer survivors who
provided the survey data, and Christophe Lecathelinais for statistical
rate seems low, it is higher than that achieved by assistance.
other studies which also used cancer registries to re-
cruit diverse samples of recent survivors [40,41]. Sur- Author details
1
Priority Research Centre for Health Behaviour, University of Newcastle &
vivors who were not proficient in English were Hunter Medical Research Institute, Newcastle, Australia. 2Ingham Institute for
excluded due to the prohibitive cost of translating the Applied Medical Research, University of New South Wales, Liverpool,
Boyes et al. BMC Cancer 2012, 12:150 Page 10 of 10
http://www.biomedcentral.com/1471-2407/12/150

Australia. 3Centre for Clinical Epidemiology and Biostatistics, University of 20. Hewitt M, Greenfield S, Stovall E: From cancer patient to cancer survivor: Lost
Newcastle, Newcastle, Australia. in transition. Washington DC: The National Academies Press; 2006.
21. Brearley SG, Stamataki Z, Addington-Hall J, Foster C, Hodges L, Jarrett N,
Richardson A, Scott I, Sharpe M, Stark D, Siller C, Ziegler L, Amir Z: The
Authors’ contributions
physical and practical problems experienced by cancer survivors: a rapid
AB participated in study conception, design and acquisition of funding; was
review and synthesis of the literature. Eur J Oncol Nurs 2011,15:204–212.
responsible for implementing the study protocol; performed some of the
22. Boyes AW, Girgis A, D’Este C, Zucca AC: Flourishing or floundering?
statistical analysis; interpreted the data and drafted the manuscript. AG
Prevalence and correlates of anxiety and depression among a
participated in study conception, design and acquisition of funding. CD
population-based sample of adult cancer survivors 6 months after
participated in the study design and acquisition of funding, and coordinated
diagnosis. J Affect Disord 2011, 135:184–192.
the statistical analysis. AZ helped to implement the study protocol and
23. Hall AE, Boyes AW, Bowman J, Walsh RA, James, EL, Girgis A: Young adult
performed some of the statistical analysis. All authors participated in revising
cancer survivors’ psychosocial well-being: a cross-sectional study
the manuscript, and read and approved the final version.
assessing quality of life, unmet needs and health behaviors. Support Care
Cancer, in press.
Received: 14 October 2011 Accepted: 18 April 2012
24. Feuerstein M: Defining cancer survivorship. J Cancer Surviv 2007, 1:5–7.
Published: 18 April 2012
25. Office of Cancer Survivorship: About cancer survivorship – definitions.
[http://dccps.nci.nih.gov/ocs/definitions.html]
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