Symptoms and concerns amongst cancer outpatients: Identifying the need for specialist palliative care

Abstract

This study aimed to define and prioritize the need for specialist palliative care (SPC) in cancer outpatient clinics. A validated assessment tool, the Symptoms and Concerns Checklist, was used to determine the prevalence and severity of symptoms and concerns. The checklist was completed by 480 outpatients with a cancer diagnosis. Sixty patients from each of eight primary tumour groups (lung, breast, gastrointestinal, gynaecological, urological, head and neck, brain and lymphoma) were recruited. The majority of patients (over 90%) rated 27 of the 29 checklist items, reporting a mean of 10 items as current problems. The influences of disease site and status, demographic factors and treatment on the number and type of symptoms and concerns reported were investigated. The highest number of symptoms and concerns and most severe problems were reported by patients with lung cancer, followed by those with brain tumours; the lowest by those with lymphoma and urological tumours. A high proportion of patients (83%) reported one or more items likely to benefit from SPC intervention. The results of this study suggest an extensive need for better symptom control in all cancer outpatients and in centres where SPC resources are limited, priority could be given to patients attending lung and brain tumour clinics.

Full text

Symptoms and concerns amongst cancer outpatients:
identifying the need for specialist palliative care
V Lidstone and E Butters Sainsbury Department of Palliative Medicine, St. Thomas‘ Hospital, London,
PT Seed Fetal Health Research Group, Department of Obstetrics and Gynaecology, Guy‘s Kings and St. Thomas‘
School of Medicine, King‘s College London, St. Thomas‘ Hospital, London and C Sinnott,T Beynon and
M Richards Sainsbury Department of Palliative Medicine, St. Thomas‘ Hospital, London
Abstract: This study aimed to define and prioritize the need for specialist palliative care
(SPC) in cancer outpatient clinics. A validated assessment tool, the Symptoms and
Concerns Checklist, was used to determine the prevalence and severity of symptoms
and concerns. The checklist was completed by 480 outpatients with a cancer diagnosis.
Sixty patients from each of eight primary tumour groups (lung, breast, gastrointestinal,
gynaecological, urological, head and neck, brain and lymphoma) were recruited. The
majority of patients (over 90%) rated 27 of the 29 checklist items, reporting a mean of 10
items as current problems. The influences of disease site and status, demographic factors
and treatment on the number and type of symptoms and concerns reported were
investigated. The highest number of symptoms and concerns and most severe problems
were reported by patients with lung cancer, followed by those with brain tumours; the
lowest by those with lymphoma and urological tumours. A high proportion of patients (83%)
reported one or more items likely to benefit from SPC intervention. The results of this study
suggest an extensive need for better symptom control in all cancer outpatients and in
centres where SPC resources are limited, priority could be given to patients attending lung
and brain tumour clinics. Palliative Medicine 2003; 17: 588 ¡/595
Key words: cancer; outpatients; palliative symptoms; psychological concerns; questionnaire
Introduction
The Calman ¡/Hine report
1
recommends that specialist
palliative care (SPC) services should integrate in a
seamless way with all cancer treatment services to ensure
optimal symptom control and provide the best possible
quality of life for the patient and their family. The NHS
Cancer Plan
2
supports increased access to SPC services,
stating that SPC should no longer be regarded as a
service which is an ‘optional extra’, but should be
‘available to all patients’. The Cancer Plan provides the
beginnings of a strategy to expand SPC services and
pledges to provide increased financial commitment to
make this possible.
In current practice, hospital SPC teams tend to focus
on the care of inpatients, who are likely to have a higher
prevalence of severe symptoms than outpatients. Studies
from the USA
3
and France
4
have shown that symptom
control can be suboptimal in patients attending cancer
centres. Studies in the UK confirm that intervention from
SPC teams improves symptom control.
5 ,6
However,
guidance in planning appropriate expansion of SPC
services into the outpatient setting is minimal and it is
unclear how limited SPC resources may best be targeted
to benefit the largest number of patients.
This study forms part of a formal needs assessment for
SPC carried out in a large cancer centre in the UK. The
main aims of the study were to assess the prevalence and
severity of symptoms and concerns in outpatients with
cancer and to identify patient groups who might parti-
cularly benefit from routine involvement of SPC teams in
outpatient clinics. A parallel study, which elicited the
views of health care professionals on the potential
benefits and drawbacks of SPC involvement in the
outpatient setting, will be reported separately.
Methods
Patients attending cancer outpatient clinics at a large
cancer centre in London, UK, were invited to participate.
The study was approved by the local research ethics
committee and verbal consent was obtained from each
patient. Patients were eligible for the study if they were
over 18 years of age and had a histologically proven
cancer diagnosis. Sixty patients from each of eight
tumour groups (lung, breast, gastrointestinal, gynaeco-
logical, urological, head and neck, lymphoma and brain)
were recruited. Consecutive patients were recruited
Address for correspondence: Dr V Lidstone, 17 Warren Road,
Banstead, Surrey SM7 1LG, UK.
E-mail: Victoria@Lidstone.net
Palliative Medicine 2003; 17: 588¡/595
#Arnold 2003 10.1191/0269216303pm814 oa

wherever possible, unless they were called to their
consultation immediately after arrival in the clinic.
Patients were asked to complete the 29-item Symptoms
and Concerns Checklist prior to their consultation
(Appendix). The validity and acceptability of the check-
list, developed at Guys’ and St. Thomas’ Hospitals NHS
Trust, have been reported elsewhere.
7 ,8
Fifteen checklist
items relate to physical, psychological or cognitive
problems; the remaining 14 items cover a range of other
concerns (e.g., self-care, relationships, finance, work and
the future). Patients were asked to rate how much of a
problem each item had been over the previous week using
a 0¡/3 scale (0: ‘not at all’, 1: ‘a little’, 2: ‘quite a bit’, 3:
‘very much’).
Information was collected from medical records re-
garding age, gender, diagnosis, current treatment (radio-
therapy and/or chemotherapy), current disease status and
involvement of SPC team for each patient. As the study
progressed, it became apparent that referral to SPC was
not always well documented in the notes, and subse-
quently patients were asked about this specifically at the
time they completed the checklist. Disease status was
classified as early/nonadvanced (patients undergoing
primary or adjuvant treatment with curative intent),
remission (patients in first remission of cancer following
primary treatment) or advanced (all other patients).
Sixty patients in each tumour group were required to
give an estimated 80% power to distinguish (5% two-
sided significance) between a single tumour group
reporting moderate/severe pain at a true rate of 35%
from a possible rate of 20%.
9
Regression using a total of
480 patients allows for an estimation of the level of need
for patients with each particular combination of disease,
age and therapy.
Analysis
For each checklist item, the proportion of patients
reporting checklist ratings of 1, 2 or 3 and the proportion
reporting checklist ratings of 2 or 3 were calculated.
A subgroup of items (Group A) was also studied in
more detail. This included six predominantly physical
items which have been shown to improve in a hospital
inpatient setting following referral to a SPC team: pain;
change in appetite/weight; dry/sore mouth; constipation;
feeling/being sick and difficulty sleeping.
5, 6
Linear regression is used to examine relationships
between the mean number of symptoms and tumour
site, age, gender, disease status, and treatment regimen.
Where the effect of age is analysed, the linear effect of a
difference of 10 years in age is given. Standard errors are
adjusted to allow for non-normality,
1 0
and ordered
logistic regression is used to examine symptom ratings.
1 1
The lung tumour group is used as the reference group for
tumour site as previous studies and the authors experi-
ence indicated that high levels of symptoms/concerns
were likely in this group.
12 , 1 3
Chi-square tests are used for
multiple comparisons of percentages and estimates
(differences in mean numbers of symptoms) and odds
ratios (OR) with 95% confidence intervals (CI) are
presented. Where the CI excludes no effect
(difference ¾/0 or ratio ¾/1) this indicates significance
(PB/0.05). No other P values are reported.
Results
Patient characteristics
Four hundred and ninety-two patients were invited to
participate in the study between February and May 1999,
of whom 480 (97.6%) agreed to participate. Patient
characteristics are shown in Table 1.
Completion of checklist
Average completion time for the checklist was five
minutes. Twenty-six of the 29 items were completed by
over 97% of participants. Lower completion rates were
observed for items related to religious/spiritual issues
(91%), sexual relationships (51%), and work (44%);
however, the latter two items were suffixed ‘leave blank
if not applicable’.
Prevalence of symptoms and concerns
Feeling tired/weak/lacking energy (fatigue) was the most
common problem: 79% of the sample reported fatigue
(items rated 1, 2 or 3) and 43% rated this item as 2 or 3
(Table 2). Fifty per cent or more of the sample reported
concerns about the future, being unable to doing things,
feeling tense/worried/fearful, pain, low mood/depression
and mouth/taste problems, and 20% or more rated these
items 2 or 3 (Table 2).
Number of symptoms and concerns
The mean number (9/SD) of symptoms/concerns re-
ported (items rated 1, 2 or 3) was 10.29/5.8 per patient.
The mean number of items rated 2 or 3 was 4.89/4.6.
Only 2% of the sample reported no symptoms/concerns
at all, whilst 6% reported at least 20 of a possible 29
(Figure 1). The mean number of items reported did not
differ with gender, but was influenced by disease status
(highest in advanced disease: mean 11.49/5.6, lowest in
remission: mean 7.69/5.6, difference 3.8, CI 2.4¡/5.3), age
(highest for 30 ¡/39 years and 40¡/49 years: mean 129/6.5,
decreasing thereafter by an average of 0.82 per decade,
difference ¼
/0.79, CI ¼
/1.18 to ¼
/0.41) and tumour site.
Patients with lung cancer reported the greatest number of
problems (mean 129/6.1), followed by those with brain
(11.49/5.2), breast (10.79/4.8), gastrointestinal (10.59/
5.7), and head/neck (10.29/5.8) cancers. Rankings
Identifying the need for specialist palliative care in cancer outpatients 589

remained similar when only items rated 2 or 3 were
considered: no tumour group changed by more than one
ranking. Significantly fewer symptoms were reported by
the gynaecological group (mean 9.29/6.3, difference ¼
/
3.11, CI ¼
/5.21 to ¼
/1.02), urological group (mean 8.89/
5.5, difference ¼
/3.38, CI ¼
/5.44 to ¼
/1.32), and lym-
phoma group (mean 8.79/6.6, difference ¼
/4.29, CI ¼
/
6.61 to ¼
/1.98). No significant difference was found in
the number of items reported by those receiving radio-
therapy/chemotherapy compared with those not receiving
these treatments.
Subgroup analysis of checklist items
Eighty six per cent of the whole sample reported one or
more of the six Group A items, and 47% 3 or more. Fifty
six per cent rated one or more items 2 or 3, and 14% 3 or
more. The number and severity of items reported was
influenced by tumour type, disease status and gender.
The strongest influence was the presence of a lung
primary, these patients reporting a higher number and
more severe problems than those in other tumour groups
(difference 0.92, CI 0.41 ¡/1.43). No significant differences
were found between other tumour groups. More than
20% of patients with lung or gastrointestinal cancers
reported having five or more Group A symptoms, and
13% of the lung group reported all six, twice as many
than for any other tumour group. Patients in remission
reported a lower number and fewer severe problems than
those in other stages of disease (difference ¼
/0.70, CI ¼
/
1.11 to ¼
/0.29). Females tended to report a higher
number and more severe problems than males (difference
0.36, CI 0.05¡/0.68). No significant associations were
found for age or radiotherapy/chemotherapy treatment.
Influence of disease, treatment and demographic factors
Tumour site. Table 3 shows the prevalence of symp-
toms/concerns reported by patients in each tumour group
(percentage of patients rating checklist items 1, 2 or 3).
Differences between tumour groups were seen in the
prevalence of 14 of the 29 items: pain, mouth/ taste
problems, change in appetite/weight, feeling weak/tired/
lacking energy, not being able to do things, concerns
about future, concentration/memory, feeling short of
breath, worries about others, concerns about appearance,
caring for self, bladder/urinary problems, diarrhoea, and
swallowing problems (x
2
15.76 ¡/57.73, df ¾/7, P B/0.05).
Lung cancer patients reported the highest prevalence for
eleven of the 29 items, including five of the six Group A
items, feeling short of breath (75%), and feeling angry
(43%) (Table 3). Brain tumour patients reported the
highest prevalence for eight of the 29 items, including
fatigue (feeling weak/tired/lacking energy) (90%), pro-
blems with concentration/memory (83%), not being able
to do things (67%), treatment or care (44%) and lack of
information (38%). Brain tumour and breast cancer
patients reported the highest prevalence of concerns
about the future (70%). Breast cancer patients reported
the highest prevalence of worries about others (58%) and
concerns about appearance (48%). Patients with gastro-
intestinal cancer reported the highest prevalence of
diarrhoea (30%) and feeling tense/worried/fearful (68%).
Patients with head and neck tumours reported the
highest prevalence of mouth/taste problems (63%) swal-
lowing problems (50%) and problems with communica-
tion (30%). Patients with genitourinary cancer reported
the highest prevalence of bladder/urinary problems
(48%). The ranking of the prevalence of these items
Table 1 Patient characteristics
Whole
sample
Breast Lung Gastrointestina l Gynaecological Urological Head/neck Brain Lymphoma
Number of patients 480 60 60 60 60 60 60 60 60
Median age (IQR) 61
(41 ¡/79)
57
(49 ¡/66)
65
(55 ¡/72)
66
(57 ¡/74)
62
(56 ¡/68)
69
(60 ¡/72)
64
(52 ¡/73)
51
(42 ¡/59)
48
(38 ¡/65)
Female (%) 49 100 33 47 100 7 33 33 37
Remission (%) 15 18 0 0 3 13 32 5 52
Advanced (%) 52 40 90 70 53 33 30 95 0
Nonadvanced d isease (% ) 33 40 10 30 43 53 38 0 47
On treatment (%) 35 45 33 48 55 32 22 27 18
SPC input: yes (%) 13 17 22 15 18 7 5 15 2
SPC input: no (%) 64 53 58 63 67 75 57 50 92
SPC input: unknown (%) 23 30 20 22 15 18 38 35 5
IQR, interquartile range.
Treatment, chemotherapy/radiotherapy.
SPC, specialist palliative care.
590 V Lidstone et al.

was similar when restricted to those rated 2 or 3 (data not
shown).
Age. Older patients tended to report a similar pre-
valence for most of the physical symptom items com-
pared to the younger groups but tended to report fewer
psychosocial concerns. High levels (over 70%) of fatigue
were reported across all ages (lowest 20 ¡/29 years group:
72%, highest 80 ¡/99 years group: 89%). However, the 20 ¡/
29 years group reported the highest frequency of fatigue
ratings of 2 or 3 (14%).
The 20 ¡/29 years group reported the highest prevalence
of concerns about appearance (59%; OR 0.74, CI 0.65¡/
0.84) and the prevalence of this item decreased after age
30 years. The 30 ¡/39 years group reported the highest
prevalence of feeling tense/worried/fearful (69%; OR
0.84, CI 0.75¡/0.94), low mood/depression (66%; OR
0.80, CI 0.71¡/0.90), feeling angry (53%; OR 0.83, CI
0.73 ¡/0.95), concerns about work (41%; OR 0.51, CI
0.42 ¡/0.61) and lack of support (25%; OR 0.82, CI 0.69¡/
0.98). The prevalence of these items decreased in a linear
fashion after age 40 years. The 40¡/49 years group
reported the highest prevalence of concerns about the
future (75%; OR 0.70, CI 0.62¡/0.79), concentration/
memory problems (60%; OR 0.86, CI 0.77¡/0.97), worries
about others (59%; OR 0.80, CI 0.71¡/0.90), finances
(46%; OR 0.68, CI 0.59 ¡/0.78), problems with treatment/
care (40%; OR 0.87, CI 0.76¡/1.0) and concerns about
sexual relationships (35%; OR 0.76, CI 0.57¡/0.80). The
prevalence of these items decreased after age 50 years.
The 60 ¡/69 years group reported the highest prevalence of
bladder/urinary problems (32%; OR 1.18, CI 1.02¡/1.37)
and the 70 ¡/79 years group the highest prevalence of
feeling short of breath (56%; OR 1.24, CI 1.09 ¡/1.40).
Gender. Women reported more concerns than men
related to appearance (females: 42%, males: 26%; OR
2.02, CI 1.38 ¡/2.95), feeling tense/worried/fearful (60%,
51%; OR 1.70, CI 1.21¡/2.38), pain (60%, 49%; OR 1.58,
CI 1.13 ¡/2.21) and change in appetite/weight (50%, 43%;
OR 1.52, CI 1.08¡/2.15), but fewer problems with sexual
relationships (24%, 33%; OR 0.50, CI 0.30¡/0.84).
Disease status. Overall differences relating to disease
status were found for five items. Patients with advanced
disease reported the most problems and those in remis-
sion the least problems with being unable to do things
(advanced: 68%, nonadvanced: 49%, remission: 34%),
fatigue (87%, 78% and 58%), mouth/taste problems (58%,
47% and 31%), change in appetite/weight (54%, 44% and
29%) and self-care (45%, 25% and 21%). All differences
were highly significant (x
2
17.07¡/36.38, df ¾/2, PB/
0.005). However the prevalence of some items was high
even for those in remission: over a third of patients in
remission reported problems with fatigue (57%), concerns
about the future (41%), pain (45%), concentration/
memory (43%), feeling tense/worried/fearful (41%), sleep
(38%), low mood/depression (38%), feeling short of
breath (36%), and being unable to do things (34%).
Treatment. Patients receiving radiotherapy or che-
motherapy treatment reported more diarrhoea (on treat-
ment: 26%, not on treatment: 12%; OR 2.36, CI 1.44 ¡/
3.86), concerns about appearance (41%, 29%; OR 1.67,
CI 1.13 ¡/2.47), fatigue (86%, 76%; OR 1.47, CI 1.04 ¡/
2.07), and mouth/taste problems (58%, 46%; OR 1.47,
CI 1.03 ¡/2.10) than those not receiving these treatments.
Those receiving radiotherapy reported more problems
than those receiving chemotherapy with relationships
Table 2 Frequency of symptoms and concerns reported by
the whole sample (n¾/480)
Checklist items Patients rating
item as 1, 2 or 3
Patients rating
item as 2 or 3
n (%) n (%)
Group A
Pain 253 (53) 103 (22)
Mouth/taste (e.g., dry/sore
mouth)
240 (50) 113 (24)
Sleep 234 (49) 113 (24)
Change in appetite/weight 220 (46) 102 (21)
Constipation 160 (33) 58 (12)
Feeling/being sick 111 (23) 41 ( 9)
Other items
Feeling tense/worried/fearful 267 (56) 99 (21)
Feeling low i n mood/depressed 247 (51) 98 (20)
Feeling angry 144 (30) 66 (14)
Feeling weak /tired/lacking en-
ergy
379 (79) 207 (43)
Not being able to do the things
you usually do
271 (57) 161 (34)
Worries or concerns about the
future
273 (57) 155 (32)
Concentrating/remembering 2 36 (49) 100 (21)
Feeling short of breath 216 (45) 86 (18)
Worries/concerns about
important people in your life
211 (44) 100 (21)
Appearance 161 (34) 69 (14)
Caring for self 156 (33) 86 (18)
Finance 132 (28) 71 (15)
Anything to do with your
treatment/side effects/care
131 (27) 57 (12)
Lack of information abo ut
illness/treatment
125 (26) 48 (10)
Bladder/urinary 118 (25) 56 (12)
Relationships w ith important
people in your life
115 (24) 59 (12)
The way in which doctors/
nurses communicate with you
94 (20) 52 (11)
Diarrhoea 83 (17) 26 (6)
Work 77 (16) 42 (9)
Swallowing 75 (16) 37 (8)
Sexual relationship 71 (15) 43 (9)
Lack of support from others 61 ( 13) 31 ( 7)
Spiritual/religious issues 27 (6) 13 (3)
26/29 items rated by Í/97% of patients; B/97% for spiritual/
religious issues (91%), sexual relationships (51%), work
(44%).
Identifying the need for specialist palliative care in cancer outpatients 591

with others (radiotherapy: 38%, chemotherapy: 16%; OR
3.18, CI 1.48 ¡/4.61), bladder/urinary problems (33%,
18%; OR 2.31, CI 1.09 ¡/4.91), and lack of information
(33%, 18%; OR 2.06, CI 1.46¡/4.82).
Discussion
We are not aware of any comparable large scale studies
undertaken exclusively in an outpatient setting in which
the prevalence and severity of symptoms and concerns
has been investigated by cancer site and disease status.
The sample is representative and is intended to reflect the
needs of the wider cancer outpatient population. The
very high proportion of patients who agreed to partici-
pate (98%) and high completion rates (over 97%) for 26
of the 29 checklist items in this study provide further
evidence of the acceptability of the checklist. Further-
more, the nature, severity and frequency of the symp-
toms/concerns reported were related to some extent to
the site of the primary tumour, and although this is an
expected outcome, it has not been shown in this setting
before and is a reassuring finding supporting the
relevance of the checklist.
Patients in this study reported an average of 10 items
that had been a problem over the previous week, which
although similar to that reported by Portenoy et al.
14
is
still a relatively large number considering these patients
are at home and only half of the sample had evidence of
advanced disease. The prevalence and relative rankings of
individual items are consistent with previous studies in
cancer patients: fatigue was the most commonly reported
problem and more than half of sample reported having
pain, with 22% reporting pain ratings of 2 or 3.
1 4 ,1 9 ,2 2
Figure 1 Number of symptoms/concenrs reported
Table 3 Frequency of items rated 1, 2 or 3 in relation to primary tumour site
Checklist item s Breast Lung Gastro-
intestinal
Gynae-
cological
Urological Head
and Neck
Brain Lymphoma
n¾/60 n¾/60 n¾/60 n ¾/60 n¾/60 n ¾/60 n¾/60 n ¾/60
(%) (%) (%) (%) (%) (%) (%) (%)
Group A
Pain 62 68 58 50 40 52 53 38
Mouth/taste (e.g., dry/sore mouth ) 42 62 55 48 40 63 52 38
Sleep 50 62 53 40 52 37 50 47
Change in appetite/weight 48 62 52 48 30 43 47 37
Constipation 30 48 28 38 30 37 32 23
Feeling/being sick 18 38 25 25 17 22 17 23
Other items
Feeling weak/tired/lacking energy 83 88 80 70 79 77 90 63
Not being able to do things you usually do 62 63 63 52 43 53 67 43
Worries or concerns about future 70 60 58 45 52 52 70 48
Feeling tense/worried/fearful 62 58 68 47 47 58 50 55
Feeling low in mood/depressed 52 58 58 43 43 57 53 47
Concentrating/remembering 57 45 45 47 32 48 83 37
Feeling short of breath 43 75 38 35 38 48 40 42
Worries/concerns about others 58 48 47 35 45 40 48 32
Appearance 48 28 27 42 18 28 42 35
Caring for self 35 43 42 30 17 30 42 22
Feeling angry 28 43 33 17 25 32 35 27
Finance 35 32 30 18 24 28 27 29
Anything to do with treatm ent/side effects/care 32 25 22 30 23 23 44 20
Lack of informatio n about illness/treatment 18 30 28 23 30 25 38 17
Bladder/urinary 22 18 20 35 48 10 27 17
Relationships with others 25 32 18 25 20 24 28 20
The way in which doctors/nurses co mmunicate with you 18 13 13 17 17 30 25 23
Diarrhoea 15 20 30 23 23 10 7 8
Work 17 13 18 10 15 10 22 30
Swallowing 7 20 12 5 7 50 13 12
Sexual relat ionship 13 13 7 12 20 10 22 22
Lack of support from others 15 15 8 10 10 14 17 13
Spiritual/religious issues 3 8 8 3 5 8 5 3
592 V Lidstone et al.

Studies investigating the effect of intervention by SPC
teams on physical symptoms are scarce because of the
acknowledged practical difficulties of research in this
field; however, a systematic review of the literature in this
area concluded that the specialist approach improved
pain control and symptom management.
2 0
In this study,
one or more of the Group A items was reported by 83%
of the sample, implying widespread unmet need likely to
respond to SPC intervention. Since this study was
completed further information has been published con-
firming that intervention by SPC teams can significantly
improve pain, nausea and vomiting, gastric discomfort
and diarrhoea.
1 5
However, of the six items reported by more than 50%
of the sample, four were not physical in nature, but
reflected psychosocial issues; one previous study has
linked the number of concerns reported to psychological
morbidity,
18
and a more recent Australian study found
the highest level of unmet need was in the psychological
domain.
1 6
Whilst females did not report higher numbers
of symptoms/concerns, a significantly higher prevalence
of pain, change in appetite/weight, concerns about
appearance, and feeling tense/worried/fearful are shown.
Previous studies have also found females report higher
levels of anxiety.
19
In this study younger patients
generally reported more symptoms/concerns, often
centred around the family support or the future and
this may reflect their perceived responsibilities in society
and ability to provide for a family; the prevalence of these
items was not related to disease status. Although there is
little published evidence of the impact of SPC interven-
tion on psychosocial concerns, psychological support is
often considered one of the main functions of the SPC
team by both oncologists, SPC specialists and pa-
tients,
1 7, 2 1
and the multiprofessional nature of a SPC
team has been found to be beneficial increasing satisfac-
tion for both patients and their carers.
2 0
This study reveals a high level of unmet need, physical,
and psychological in the cancer outpatient population.
This need should be met by a collaborative approach
between oncologists and SPC teams (both hospital and
community). Improving awareness amongst oncologists
regarding level of symptoms/concerns is an important
step towards meeting this need, as recognition will hasten
appropriate referral. The skills offered by a SPC team
should complement those offered by oncologists, and a
collaborative approach is essential to achieving optimal
management for this group of patients. The second part
of this study, which involved interviewing all oncology
and SPC doctors and nurses at the study centre regarding
SPC provision, wants, needs and practicalities, confirmed
that oncologists most valued symptom control expertise
and community liaison in the service provided by their
SPC colleagues. The oncologists were keen for further
collaboration between the two services to provide
optimal care for patients, and this provides a good
starting point for development.
Presently, SPC services offer the expertise to tackle a
patient’s physical and psychological needs and where
resources are limited, the results of this study suggest that
priority might be given to patients attending lung and
brain tumour clinics, followed by gastrointestinal, breast
and head and neck clinics.
From a practical viewpoint, in the study centre this
would ideally entail placing a SPC team member in three
to five clinics/week, which clearly would have an impact
on staffing levels within the SPC department. Involve-
ment of appropriate community SPC teams in providing
SPC expertise in clinic would be beneficial not only from
the practical staffing point of view, but also because it
would improve communication, providing useful liaison
between clinic and community. The impact of SPC
provision could then be reevaluated after a period of
time by repeating a study similar to this. Although the
prevalence of symptoms/concerns was lower in patients
with gynaecological and urological cancers and amongst
those with lymphoma, over 20% of lymphoma patients
reported pain ratings of 2 or 3 and ready access to SPC
should be available where resources are insufficient for
routine input by a SPC team.
In conclusion, patients attending cancer outpatient
clinics reported active symptoms and concerns fre-
quently. Further studies are required to assess whether
routine presence SPC teams in the outpatient clinics
would significant reduces the physical and psychological
suffering revealed by this study.
Acknowledgements
All authors contributed to the design of the study and
preparation of the paper; VL collected the data; PS and
VL analysed the data. The authors would like to thank
staff and patients at Guys and St Thomas’ Hospital
outpatient clinics and Pauline Kingston for her help in
data collection.
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Appendix
Symptoms and concerns checklist
We would like you to complete this questionnaire and to give it to the researcher.
Please fill in your name _______________________________Your date of birth ____________
Please answer by circling the number that best applies to you.
Over the past week ¡/how much of a problem have the following been:
Over the past week how much of a problem have the following been?
Not
at all
A
little
Quite
a bit
Very
much
Lack of information about your illness or treatment
»
0 1 2 3
The way in which doctors and nurses communicate with you 0 1 2 3
Anything to do with your treatment (e.g.,. side effects) or care 0 1 2 3
Not being able to do the things you usually do 0 1 2 3
(e.g., social activities)
Caring for yourself 0 1 2 3
Lack of support from others* 0 1 2 3
Your relationships with important people in your life 0 1 2 3
(e.g., your partner, children, other family members)
Worries or concerns about important people in your life 0 1 2 3
Worries or concerns about your appearance 0 1 2 3
Your sexual relationship
#
(leave blank if not applicable) 0 1 2 3
Your finances 0 1 2 3
Your work (leave blank if not applicable) 0 1 2 3
Spiritual/religious issues 0 1 2 3
Worries or concerns about the future 0 1 2 3
Please list any other symptoms/concerns you consider important:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Thank you for completing this form.
NB. Please note the following amendments have been made to checklist since this study:
»
Not being given enough information about your illness or treatment.
* Not getting enough support from others.
#
Your intimate/sexual relationship (leave blank if not applicable).
Not at all A little Quite a bit Very much
Pain 0 1 2 3
Feeling weak, tired or lacking energy 0 1 2 3
A change in your appetite and/or weight 0 1 2 3
Feeling sick and/or being sick 0 1 2 3
Constipation 0 1 2 3
Diarrhoea 0 1 2 3
Bladder/urinary problems 0 1 2 3
Sleeping problems 0 1 2 3
Feeling short of breath 0 1 2 3
Mouth/taste problems (e.g., dry/sore mouth) 0 1 2 3
Swallowing problems 0 1 2 3
Problems concentrating or remembering things 0 1 2 3
Feeling low in mood or depressed 0 1 2 3
Feeling tense, worried or fearful 0 1 2 3
Feeling irritable or angry 0 1 2 3
Identifying the need for specialist palliative care in cancer outpatients 595