Download Unmet needs mediate the relationship between symptoms

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DOI 10.1007/s00520-015-2994-0
ORIGINAL ARTICLE
Unmet needs mediate the relationship between symptoms
and quality of life in breast cancer survivors
K. K. F. Cheng 1 & W. H. Wong 2 & C. Koh 2
Received: 4 June 2015 / Accepted: 26 October 2015
# Springer-Verlag Berlin Heidelberg 2015
Abstract
Purpose This study aimed to compare the symptoms, unmet
needs, and QoL reported by women at 6 months to <2 years
and 2 to 5 years following surgery and adjuvant treatment for
breast cancer. It also evaluated the relationships among symptoms, unmet needs, and QoL using structural equation
modeling.
Methods In this study, 113 and 137 survivors following breast
cancer treatment 6 months to <2 years and 2 to 5 years, respectively, completed the Memorial Symptom Assessment
Scale, the Supportive Care Needs Survey-34, and the Medical
Outcomes Study 12-item Short Form Health Survey version
2.0 during their medical follow-up.
Results The mean numbers of symptoms and unmet needs
were 5.43 and 3.0, respectively, for survivors at <2 years,
and 5.24 and 2.42, respectively, for survivors at 2 to 5 years
following treatment. The most common reported symptoms
were related primarily to physical domains. No significant
differences were found between the two survivor groups on
the MSAS scores. Survivors at <2 years reported significantly
higher scores in Psychological and Health Care System/
Information needs (p<0.01), and lower composite scores in
physical and mental QoL (p<0.05) than those at 2 to 5 years
post-treatment. Significant direct and indirect effects were
found of symptom burden through unmet needs on survivors’
* K. K. F. Cheng
[email protected]; [email protected]
1
Alice Lee Centre for Nursing Studies, Yong Loo Lin School of
Medicine, National University of Singapore, National University
Health System, Level 2, Clinical Research Centre, MD11, 10
Medical Drive, Singapore 117597, Singapore
2
National University Hospital, National University Health System,
Singapore 119074, Singapore
physical and mental QoL after adjustment for survival time,
and the models showed a good fit.
Conclusions Results suggest that breast cancer survivors continue to endure many symptoms independent of the survivorship period. The unmet needs mediate the relationship between symptom burden and survivors’ QoL.
Keywords Breast cancer . Cancer survivorship . Symptoms .
Unmet needs . Quality of life
Introduction
The overall 5-year relative survival rates for localized and
regional breast cancer have been reaching 98.6 and 83.8 %,
respectively [1]. The survival rates are expected to continue to
increase, resulting in an increasing population of patients with
supportive care and psychosocial needs as they are
predisposed to the risk of potentially long-term or late effects
of their cancer treatment and psychosocial concerns [1]. Effective and quality long-term survivorship care has gained an
ever greater emphasis in clinical practice and research. Nevertheless, survivorship is an evolving concept in the literature,
in which medical professionals define a cancer survivor as a
patient who has a minimal risk of cancer recurrence (5 years
after completing treatment) [2]. The latest model of cancer
survivorship incorporating psychosocial concepts has suggested several distinct phases of survival: the time from diagnosis to the end of primary cancer treatment (acute survival),
the transition from treatment completion to return to normal
(transitional survival) and from observation to surveillance
(extended survival), and the period of living with cancer
(chronic survival) towards permanent (long-term disease-free
survival) [3, 4]. Clinically, the first 5 years post-treatment
(transitional and extended survival period) would be a
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vulnerable phase, when the survivors may face a multitude of
problems, including persistent and/or late-emerging symptoms following cancer and treatment, psychosocial distress
associated with the risk of cancer recurrence, chronic uncertainty, and psychosocial disruption. Although symptoms improve over time in some individuals, they often fail to abate
completely and may accompany survival for many of the
cured women [5–7]. Janz et al. (2007) reported a mean number of 7 symptoms in breast cancer survivors (BCS) at about
7 months after the primary cancer treatment [7], and Fu et al.
(2009) reported that 70 % of women at ≥3 years postcompletion of their adjuvant treatment complained of ≥6
symptoms [8]. Fatigue, arm pain, numbness/tingling, lymphedema, and problems with sleeping are the most common
symptoms reported by BCS [9]. Although these symptoms
are subtle or subclinical in nature, they can compromise the
survivors’ daily activities and return to normal daily life, thus
affecting their quality of life (QoL) [10–12]. In addition, significant psychological symptoms, including fear of relapse
and feelings of uncertainty about the future, can contribute
to long-term morbidity and complicate the transition process
[6, 7, 10]. The literature also indicates that depressive symptoms are associated with lower patient satisfaction, less adherence to follow-up care, and poorer health outcomes [13].
The morbidities and distress resulting from cancer- and
cancer treatment-related symptoms can lead to unmet needs
across a range of domains, and vice versa. To date, symptom
burden, unmet needs, and QoL have never been evaluated
together in the BCS setting. In addition, the correlation and
regression modeling used in previous studies did not allow the
exploration of all possible relationships among the study variables and their feedbacks (reciprocal relationships). Also,
both the independent and dependent variables would not allow multiple indicators of broader constructs. It should also be
noted that 5 years post-treatment is a wide time period and we
do not know if the women at the first 2 years post-treatment
have similar or different symptoms and unmet needs to those
between 2 and 5 years post-treatment. This study aimed to
compare the symptoms and unmet needs reported by BCS at
6 months to less than 2 years and at 2 to 5 years following
primary cancer treatment. It also evaluated the direct and indirect
effects (via unmet needs) of the symptom burden on the QoL
of BCS after adjustment for time since treatment completion.
Methods
This cross-sectional study was conducted in a regional hospital in Singapore with the approval of the Institutional Review
Board (Ref No. 2011/01844). The subjects recruited were
aged 21 or above and had completed primary cancer treatment
(surgery±adjuvant cancer therapy) between 2007 and 2011
(6 months to 5 years previously). Those who expressed an
interest in participating were recruited for the study at their
follow-up appointment, and written informed consent was obtained before enrollment in the study. The enrolled subjects
completed the self-reported Memorial Symptom Assessment
Scale (MSAS), the Supportive Care Needs Survey (SCNS34), and the Medical Outcomes Study 12-item Short Form
Health Survey version 2.0 (SF-12v2). The details of subject
recruitment process, and the preliminary findings related to
the prevalence of perceived symptoms and unmet needs have
been reported elsewhere [14].
Instruments
The MSAS, comprising 32 items, was used to measure the
symptom prevalence, frequency, and severity. The score for
that symptom was determined as the average of the scores on
the severity, frequency, and distress scales if a symptom is
being experienced. The scoring of the MSAS yields several
subscale scores, including a Physical Symptom subscale score
(PHYS), a Psychological Symptom subscale score (PSYCH),
and a Global Distress Index (GDI), as well as a total MSAS
score (TMSAS) [15]. In the current study, Cronbach’s alphas
were from 0.72 to 0.78.
The SCNS-34, consisting of 34 items with five domains,
was used to measure the patients’ perceived level of unmet
needs. They are Physical/Daily Living needs, Psychological
needs, Patient Care/Support needs, Sexuality, and Health Care
System/Information needs domains. The need for help for
each item is rated using a 5-point scale. A score of 3 or above
indicates an unmet need for that particular item [16].
Cronbach’s alphas in our study were from 0.70 to 0.91.
The SF-12v2 was used to measure QoL. It contains eight
domains: physical functioning, role limitations due to physical
problems, bodily pain, general health perceptions, energy/vitality, social functioning, role limitations due to emotional
problems, and mental health. Two summary component measures are obtained: the Physical Component Summary (PCS)
and the Mental Component Summary (MCS) [17, 18]. We
used Singapore population norms and weights to compute
the PCS and MCS [19]. Cronbach’s alphas for PCS and
MCS in our sample were 0.79 and 0.81, respectively.
Statistical analysis
Data were analyzed using SPSS and AMOS software version
22.0 for Windows. The Student t test was used to compare the
MSAS, SCNS-34, and SF-12v2 subscale and total scores between BCS at 6 months to <2 years and at 2 to 5 years. All
tests of significance were two-sided and a p value <0.05 was
considered statistically significant. In this study, both symptom burden and unmet needs were hypothesized to have a
direct effect on QoL, and symptom burden was also hypothesized to have an indirect effect on QoL mediated by unmet
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needs. The hypothesized direct and indirect effects among the
latent variables of symptom burden, unmet needs, and QoL
were evaluated using structural equation modeling in two
stages, to determine how well the subscale/domain scores
could be combined as measured indicators for the latent variables using confirmatory factor analysis, and to examine the
structural relationships among the latent variables. The structural model consisted of one exogenous latent variable (symptom burden) and two endogenous latent variables (unmet
needs and QoL), and was tested separately for physical and
mental QoL. Standardized path estimates were estimated for
each latent variable. All analyses were adjusted for the number
of months since treatment completion. All models were estimated using the Maximum Likelihood method. Model fit was
evaluated based on χ2 statistics, the ratio of the χ2 to degrees
of freedom (CMIN/DF), CFI, and RMSEA. For this study, an
acceptable cut-off for CMIN/DF ranged from 1.0 to <2.0,
while the CFI, TLI, and RMSEA were >0.95, >0.95, and
<0.05, respectively [20].
Results
Subjects’ characteristics
A total of 468 eligible subjects were identified, of which 250
(53.4 %) agreed to participate and to sign the informed consent form. Reasons for refusing to participate in the study
included “no answer to the invitation despite repeated telephone calls” (n=123), “cancellation of follow-up appointment” (n=25), and “refusal to participate” (n=70). Among
the study subjects, the mean age was 54.7±8.2 years and
two thirds had been diagnosed with stage 1 or stage 2 breast
cancer (n=175, 70 %). It is of note the age and stage at diagnosis of the study sample are comparable to those of the total
breast cancer population in Singapore [22]. The mean duration
of the time since completion of the primary cancer treatment
was 28.9±17.8 months, with 45 and 55 % having completed
6 months to <2 years and 2 to 5 years, respectively (Table 1).
reported by survivors at <2 years and 2 to 5 years post-treatment, respectively. Worrying was relatively less prevalent but
still common in both groups (31 vs. 25 %, respectively,
p>0.05). As shown in Table 2, the survivors in both groups
reported the highest mean ratings of the MSAS PSYCH score
followed by the GDI. There was a trend in survivors at
<2 years post-treatment to have higher MSAS PSYCH,
PHYS, and GDI scores (mean 0.29 to 0.46) than those at 2
to 5 years post-treatment (mean 0.25 to 0.37); however, the
differences were not significant (p>0.05).
Unmet needs by post-treatment period
Of the 250 survivors, 123 (49 %) reported at least one unmet
need (52 % for survivors at <2 years post-treatment vs. 47 % at
2 to 5 years post-treatment). Of these, 66, 16, and 18 % reported 1–5, 6–10, and >10 needs, respectively. The survivors
at <2 years and at 2 to 5 years post-treatment reported on
average 3.14±5.3 (range 0–23) and 2.24±4.1 (range 0–25)
unmet needs, respectively (p>0.05). The survivors in both
groups endorsed “fears about the cancer spreading” (22 vs.
18 %, respectively) in the Psychological domain most frequently. As shown in Table 2, the survivors in both groups
rated the levels of unmet needs similarly, with the highest
mean ratings of unmet needs in the Health Care System/
Information domain followed by Patient care/Support needs,
while the Sexuality domain revealed the lowest level of unmet
needs. The mean scores for the Health Care System/
Information (mean 26.15 vs. 20.34, respectively; p=0.004)
and Psychological needs (mean 15.13 vs. 9.34, respectively;
p=0.002) were significantly higher in survivors at <2 years
post-treatment compared with those at 2 to 5 years post-treatment, with an effect size of the differences of 0.18 and 0.20,
respectively, indicating a small effect size. Scores for the Patient Care/Support needs were similar, with mean scores of
15.13 and 14.56, respectively (p>0.05), which suggests that
the level of unmet Patient Care/Support needs for help do not
differ upon the time that has elapsed since their completion of
cancer treatment.
Symptoms by post-treatment period
A total of 222 (89 %) of the 250 survivors reported having at
least one symptom (89 % of survivors in each group); of these,
53, 33, and 14 % reported experiencing 1–5, 6–10, and >10
simultaneous symptoms, respectively. The mean number is
5.43±4.3 (range 0–20) and 5.24±5.0 (range 0–27) symptoms
per survivor in the <2 years and 2 to 5 years post-treatment
groups, respectively (p>0.05). The most commonly reported
symptoms were related primarily to physical domains: lack of
energy (49 vs. 36 %, p=0.039), numbness/tingling in the
hands/feet (39 vs. 42 %, p>0.05), pain (35 % in both groups,
p>0.05), and difficulty sleeping (33 vs. 26 %, p>0.05) being
QoL by post-treatment period
As shown in Table 2, there was a trend in survivors at <2 years
post-treatment to have lower domain and composite scores
(mean 44.3 to 54.2) than those at 2 to 5 years post-treatment
(mean 48.7 to 56.2), with general health (GH), role-physical
(RF), vitality (VT), mental health (MH), social functioning
(SF), PCS, and MCS scores being significantly different
(p<0.05 for VT, SF, PCS, and MCS; p <0.01 both for RF
and MH), with an effect size of the differences of 0.13 to
0.21 indicating a small effect size.
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Table 1
Subjects’ characteristics (N=250)
Total N=250 <2 years post-treatment (n=113) 2 to 5 years post-treatment (n=137)
f (%)
Age (mean±SD)
54.7 (8.2)
53.0 (8.4)
69 (27.6)
40 (35.4)
29 (21.2)
181 (72.4)
73 (64.6)
108 (78.8)
Single
34 (13.6)
15 (13.3)
19 (13.9)
Married
Divorced/widowed
192 (76.8)
24 (9.6)
87 (77.0)
11 (9.7)
105 (76.6)
13 (9.5)
<50
≥50
Marital status
Stage of breast cancera
Stage 0
Stage 1–2
Stage 3–4
Type of surgery
Breast conserving
56.1 (7.8)
35 (14.0)
14 (12.5)
21 (15.3)
175 (70.0)
39 (15.6)
74 (66.1)
24 (21.4)
101 (73.7)
15 (10.9)
108 (43.2)
44 (38.9)
64 (46.7)
Mastectomy
Neo-adjuvant/adjuvant
Chemotherapy
142 (56.8)
69 (61.1)
73 (53.3)
29 (11.6)
15 (13.3)
14 (10.2)
Radiotherapy
Chemo-radiotherapy
Chemo drugs
Anthracycline (doxorubicin)
Alkylating agents (cyclophosphamide)
62 (24.8)
110 (44.0)
28 (24.8)
53 (46.9)
34 (24.8)
57 (41.6)
124 (49.6)
120 (48.0)
62 (54.9)
61 (54.0)
62 (45.3)
59 (43.1)
90 (36.0)
49 (43.4)
41 (29.9)
Antimetabolites (5-fluorouracil, methotrexate, capecitabine) 27 (10.8)
Platinum (carboplatin)
1 (0.4)
Target therapy
10 (8.8)
1 (0.9)
17 (12.4)
0
Trastuzumab
Hormone therapy
42 (16.8)
25 (22.1)
17 (12.4)
SERMs (tamoxifen, raloxifene)
Aromatase inhibitors (letrozole, anastrozole, exemestane)
Menopause status
124 (49.6)
78 (31.2)
52 (46.0)
38 (33.6)
72 (52.6)
40 (29.2)
35 (14.0)
215 (86.0)
20 (17.7)
93 (82.3)
15 (10.9)
122 (89.1)
Taxane (paclitaxel, docetaxel)
Pre-menopausal
Post-menopausal
a
One missing case, % was calculated based on n=249
Relationships among symptoms, unmet needs, and QoL
As shown in Table 3 and Fig. 1a, the direct effect
indicated that an increase in symptom burden by 1 SD
was significantly associated with an increase in unmet
needs by 0.71 SD (b=0.71) and a decrease in physical
QoL by 0.30 SD (b=−0.30). Higher unmet needs were
significantly associated with a poor physical QoL (b=
−0.38). The indirect effect revealed that an increase in
symptom burden by 1 SD was significantly associated
with a decrease in physical QoL by 0.27 through increasing unmet needs. Total effects were significant
(b = −0.57), and the model showed a good fit
(CMIN/DF = 1.877; CFI= 0.991; TLI = 0.980; RMSEA =
0.049).
The direct effect indicated that an increase in symptom
burden by 1 SD was significantly associated with an increase in unmet needs by 0.61 SD (b=0.61) and a decrease
in mental QoL by 0.54 SD (b=−0.54). Higher unmet needs
were significantly associated with poor mental QoL (b=
−0.23). The indirect effect showed that an increase in symptom burden by 1 SD was significantly associated with a
decrease in mental QoL by 0.14 through increasing unmet
needs. Total effects were significant (b=−0.674), and the
model demonstrated a good fit (CMIN/DF=1.292; CFI=
0.997; TLI=0.994; RMSEA=0.034) (Table 3 and Fig. 1b).
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Table 2
MSAS subscales/total, SCNS domains, and SF-12 domains/composite scores by years of post-treatment (N=250)
MSAS subscalesa
PHYS
PSYCH
N=250
<2 years post-treatment
(n=113)
2 to 5 years post-treatment
(n=137)
Mean±SD
Mean±SD
Mean±SD
p value
Cohen’s d
Effect size
0.27±0.31
0.41±0.55
0.30±0.30
0.46±0.57
0.25±0.32
0.37±0.53
0.223
0.189
–
–
–
–
0.40±0.47
0.45±0.46
0.36±0.47
0.153
–
–
TMSAS
Total number of symptomsb
SCNS domainsc
Physical and daily living
0.28±0.28
5.33±4.73
0.29±0.27
5.43±4.36
0.27±0.29
5.24±5.04
0.529
0.746
–
–
7.74±12.11
9.20±13.77
6.53±10.46
0.083
–
–
Psychological
Patient care and support
11.96±14.40
14.82±13.36
15.13±16.82
15.13±12.76
9.34±11.46
14.56±13.89
0.002**
0.738
0.40
–
0.20
–
Sexuality
Health care system and information
2.63±7.90
22.96±15.84
2.65±4.67
2.14±5.87
26.15±15.75
3.14±5.28
3.04±9.26
20.34±15.49
2.24±4.08
0.350
0.004**
0.901
–
0.37
–
–
0.18
–
46.8±13.6
52.0±9.8
51.2±6.8
44.3±13.8
50.9±10.5
49.7±7.9
48.7±13.2
53.0±9.2
52.5±5.5
0.013*
0.1
0.001**
0.32
–
0.42
0.16
–
0.21
Role-emotional
Bodily pain
Vitality
Mental health
51.9±5.8
54.6±10.3
52.0±5.8
54.5±11.7
51.7±6.0
54.2±11.0
49.6±15.5
52.3±13.1
52.1±5.6
54.9±9.7
54.1±13.7
56.2±10.1
0.579
0.603
0.017*
0.008**
–
–
0.30
0.33
–
–
0.15
0.16
Social functioning
54.0±10.4
52.5±12.0
55.2±8.8
0.044*
0.25
0.13
Physical composite score
Mental composite score
50.6±8.5
53.5±9.7
49.4±9.3
51.9±10.4
51.7±7.7
54.8±9.0
0.032*
0.020*
0.27
0.30
0.13
0.15
GDI
Total number of unmet needsd
SF-12 domainse
General health
Physical functioning
Role-physical
PHYS Physical Symptom subscale, PSYCH Psychological Symptom subscale, GDI Global Distress Index, TMASA total MSAS
*p<0.05; **p<0.01
a
Score range 0–4 with higher scores indicating high symptom distress
b
Total number of symptom range 0–32
c
Score range 0–100 with higher scores indicating more unmet needs
d
Total number of unmet needs range 0–34
e
Score range 0–100 with higher scores representing better QoL
Table 3
The direct, indirect, and total effects of variables on QoL (N=250)
Symptom burden
(MSAS)
Unmet needs (SCNS)
Symptom burden
(MSAS)
Unmet needs (SCNS)
Direct effect
Indirect effect
Unmet needs Physical QoL
(SF 12-PCS)
0.712***
−0.303*
Unmet needs Physical QoL Unmet needs Physical QoL χ2/df CFI/TLI
0
Total effect
−0.267
−0.375*
Unmet needs Mental QoL
Unmet needs Mental QoL
(SF 12-MCS)
0.609***
−0.536***
0
−0.138
−0.226**
PCS Physical Composite Score, MCS Mental Composite Score
*p<0.05; **p<0.01; ***p<0.001
0.712
Model fit
−0.570
−0.375
Unmet needs Mental QoL
0.609
−0.674
−0.226
RMSEA
1.877 0.991/0.980 0.049
χ2/df CFI/TLI
RMSEA
1.292 0.997/0.994 0.034
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Fig. 1 a Relationships among symptoms, unmet needs, and physical QoL. b Relationships among symptoms, unmet needs, and mental QoL
Discussion
The shift from off-treatment to the first 5 years post-treatment
would be a critical juncture of survivorship. Our results suggest that BCS at 6 months to <2 years and at 2 to 5 years posttreatment report multiple symptoms and unmet needs across a
range of domains; while some symptoms and unmet needs are
shared by both groups, others seem to be specific to an individual group. Our findings confirm the results of earlier studies [9, 21] that lack of energy, numbness/tingling in the hands/
feet, pain, and difficulty sleeping are the most common and
troublesome symptoms in both groups. Our results also show
moderate symptom severity, independent of the length of the
survivorship period. A previous longitudinal study has
revealed persisting moderately severe symptoms in the year
after primary breast cancer treatment [22]. Nevertheless, future longitudinal studies across different phases of cancer survivorship are required to map the trajectory of symptomology
as a function of the length of the survivorship period.
It is of note that more BCS at 6 months to <2 years reported
lack of energy, whereas more survivors at 2 to 5 years reported
numbness/tingling in the hands/feet. Increasingly, fatigue has
been shown to affect many patients during and after cancer
treatment, and it continues to be a significant problem for
cancer survivors many years after treatment [21, 23, 24]. Although the etiology of fatigue in the cancer setting is not fully
understood, research points to the complex biobehavioral
mechanisms involving dysregulation in proinflammatory
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cytokine and hypothalamic pituitary-adrenal function [21,
25], and an interaction of metabolic, somatic, emotional, cognitive, and psychosocial factors associated with cancer and its
treatment [4, 26]. Numbness/tingling in the hands/feet is a
common sensory problem of neurotoxic chemotherapyinduced peripheral neuropathy in the breast cancer setting,
which is often partially reversible and can remain for years
[21].
Congruent with other studies, the unmet needs reported by
BCS in this study were predominantly related to the domains
of Health Care System/Information [27, 28] and Patient
Care/Support needs [29]. It may be that survivors who have
completed primary breast cancer treatments have decreased
contact with health care professionals, resulting in increased
unmet Health Care System/Information needs. The increased
Patient Care/Support needs may have been related to the lack
of holistic approach to post-treatment care for BCS [29]. Yoon
et al. (2008) revealed that women report an unmet need for
symptom management after breast cancer treatment, suggesting the failure of health care professionals to be aware of the
problem as the reason for their unmet needs [30]. A qualitative
study to understand the needs of BCS who had completed
their hospital-based treatment 6–24 months revealed that survivors were seeking ongoing reassurance and emotional support from their doctors and medical staff during their followup [29]. The Psychological need for help concerning “fears
about the cancer spreading” was rated as high, which is confirmed by another study with breast cancer survivors who
were within 1–24 months post-treatment [31]. Of note, persistent fear of recurrence along with the greatest risk of cancer
recurrence in the first 5 years after completing treatment has
been frequently identified in the literature [2, 10, 30, 32].
Hodgkinson et al. (2007) also indicate that many of the women in the early phases of survival are concerned about possible
complications, secondary malignancies, and disease recurrence [2]. A recent study with 396 women followed up from
before surgery to 6 months post-operatively also indicates that
fear of cancer recurrence may persist well after surgery [33].
Our data reveal that women at the first 2 years posttreatment have significantly more intense unmet needs in
Health Care System/Information and Psychological domains,
and poorer QoL in all domains except physical functioning,
role-emotional, and bodily pain than those at 2 to 5 years posttreatment, and this reflects the need for help and the vulnerability to poor patient-reported health outcomes in the early
transitional survivorship. However, because of the crosssectional nature of the study, we would not be able to determine in what way unmet needs and QoL are being influenced
by the survivorship period. Further longitudinal studies are
warranted to associate causality with the length of survivorship period and changes along the transitional trajectory experienced by BCS. It is of note that unmet needs in the Patient
Care/Support domain are moderately intense in both groups of
survivors. Therefore, it is important to have a regular holistic
need assessment including the Patient Care/Support domain
during the first 5 years post-treatment for BCS.
The significant direct and indirect linkage of symptom burden to BCS’s physical and mental QoL through unmet needs
in Physical/Daily Living and Patient Care/Support domains
and Psychological and Patient Care/Support domains after
adjustment for survival time, respectively, observed in this
study confirm our hypotheses and reveal the complex nature
of the relationship between symptom burden and QoL. Although survivors’ QoL is affected negatively by the morbidities and distress associated with symptom burden, unmet
needs with respect to symptom experience constitute a partial
explanation for the variance in poor QoL experienced by
BCS. It is likely that symptoms are perceived to exceed the
individual’s capacity and confidence level to manage, and the
survivors with the worst symptom experiences would expect
additional care, support, and treatment pertaining to symptoms from the health care providers. However, gaps may exist
between a survivor’s expectation of services and the actual
experience of services [29, 34]. A qualitative study to evaluate
the perceptions and needs in relation to the healthcare of BCS
revealed that survivors were frustrated in their transition experiences by confusion about symptom treatment and the perception of an absence of providers within the health care system devoted to their unique needs [33]. Evidence increasingly
suggests that unanticipated persistent and/or late emerging
symptoms and side effects of treatment may remind BCS of
their disease and invoke fears of the cancer recurring or
spreading and feelings of uncertainty about the future [13,
32]. Gray et al. (1998) indicate that uncertainty about how to
interpret and handle symptoms appropriately often leads to
excessive worry [35]. Taken together, this symptom burden
would result in increased unmet needs in Physical/Daily Living, Psychological, and Patient Care/Support domains and
compromise BCS’s physical and mental QoL. Previous studies suggest that uncontrolled symptoms may contribute to
poor physical and psychosocial QoL in BCS [12], and QoL
can be negatively affected by BCS’s negative beliefs about
symptom management [36]. This corroborates the findings
of So et al., who found a significant negative association between physical and psychological unmet needs and QoL
among BCS at 1 year after treatment [37], and Akechi et al.,
who found a moderate to strong association between patients’
needs and QoL in BCS with a mean duration of 2 years and a
half since diagnosis [38].
In conclusion, women continue to endure many symptoms
after completing breast cancer treatment, with lack of energy,
numbness/tingling in the hands/feet, pain, and difficulty
sleeping being the most common symptoms. Symptoms are
the priority that needs to be addressed in the endeavor to
decrease the impact on need for help and QoL in women
who completed surgery±adjuvant cancer therapy 6 months
Support Care Cancer
to 5 years previously. However, this study has some limitations. It employs a cross-sectional design which limits the
ability to assess changes in symptomology, unmet needs,
and QoL over time. Although structural equation modeling
reveals the direct and indirect linkage of symptom burden to
BCS’s QoL through unmet needs, these data should not be
seen as having causal relationships. In addition, SF-12 is a
generic-based QoL measure which may lack sensitivity to
tap dimensions of health status pertaining to QoL in cancer
survivorship. Nevertheless, the findings provide some insights
into symptomology and QoL that contribute to a better understanding of the nature of survivorship beyond the risk of cancer recurrence. Our findings can also help to improve care for
BCS, and have implications for the continuous assessment of
symptoms and their specific needs following cancer treatment.
Survivorship programs embracing symptom management interventions and need-based supportive care services are equally important for women making the transition from the treatment completion phase into the first 5 years after primary
treatment of breast cancer. Further work might include combining quantitative and qualitative methodologies to obtain indepth information about the women’s perceptions and experience of survivorship, as well as to further explore and validate
the complex relationship among symptom burden, unmet
needs, QoL, and other patient-specific and healthcare-related
variables, including coping and patient-provider
communication.
Acknowledgments We thank LYTE and GL for their assistance in data
collection. We also wish to express our gratitude to the patients for agreeing to participate in this study.
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Compliance with ethical standards
17.
Competing interests The authors declare that they have no competing
interests.
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