846901

research-article2019
WJNXXX10.1177/0193945919846901Western Journal of Nursing ResearchReb and Cope

Article
Western Journal of Nursing Research
2019, Vol. 41(10) 1385­–1406
Quality of Life and © The Author(s) 2019
Article reuse guidelines:
Supportive Care Needs sagepub.com/journals-permissions
DOI: 10.1177/0193945919846901
https://doi.org/10.1177/0193945919846901
of Gynecologic Cancer journals.sagepub.com/home/wjn

Survivors

Anne M. Reb1 and Diane G. Cope2

Abstract
Gynecologic cancer survivors experience significant distress that can impact
quality of life (QOL). Optimal survivorship care requires an understanding of
the survivor’s QOL and supportive care needs. The purpose of this study was
to describe the QOL and needs of gynecologic cancer survivors. Women
with an initial diagnosis of gynecologic cancer within 7 months of completing
primary treatment (N = 34) completed the QOL-Cancer Survivor tool and
the Cancer Survivors’ Unmet Needs Survey. Fear of cancer recurrence was
a repetitive theme for both tools. The lowest ranking QOL items were
distress from diagnosis and treatment, family distress, and uncertainty about
the future. Commonly reported needs included help to reduce stress, manage
side effects, cope with fears of cancer recurrence, and gain reassurance that
providers were communicating, and providing the very best medical care.
Appreciating QOL and needs can facilitate the development of support
services specifically tailored to gynecologic survivors.

Keywords
gynecologic cancer survivors, quality of life, unmet needs, fear of cancer
recurrence

1City of Hope, Duarte, CA, USA

2Florida Cancer Specialists & Research Institute, Fort Myers, USA

Corresponding Author:
Anne M. Reb, Assistant Professor, Division of Nursing Research and Education, City of Hope,
1500 E. Duarte Rd., Duarte, CA 91010, USA.
Email: areb@coh.org
1386 Western Journal of Nursing Research 41(10)

The overall number of women diagnosed with gynecologic (GYN) cancer is

increasing, and the projected increases in GYN cancer cases will require
additional services and resources for survivorship care (Beesley, Alemayehu,
& Webb, 2018). An estimated 97,580 women will be diagnosed with endo-
metrial, ovarian, or cervical cancer in 2019 (American Cancer Society, 2019).
In the United States, there are an estimated 1.2 million survivors of GYN
malignancy (American Cancer Society, 2017). The most accepted definition
of survivor is any person diagnosed with cancer, from the time of initial diag-
nosis until his or her death. This definition also includes family, friends, and
caregivers who are affected by the diagnosis (National Coalition for Cancer
Survivorship, 2019). For this study, the focus was survivors with mixed can-
cer stages within 7 months of primary treatment completion. Women with
GYN cancers (endometrial, ovarian, cervical, vulvar, and vaginal) experi-
ence significant levels of distress and symptoms that impact quality of life
(QOL) after completing first-line therapy (de Rooij et al., 2018; Olesen et al.,
2015). The prevalence of symptoms differs among disease sites and stage of
disease. For example, ovarian cancer is typically diagnosed at advanced stage
and these women may experience significant side effects related to the dis-
ease and treatment compared with women with early stage cancer which is
generally treated with surgery alone. Common challenges that may affect
GYN cancer survivors include psychological distress, fatigue, sleep distur-
bance, urinary/bowel issues, lymphedema, menopausal symptoms, sexuality
issues, and economic and practical concerns (Beesley et al., 2018; Westin
et al., 2016).
The psychosocial aspects during early survivorship may be overlooked
for a variety of reasons. Care is delivered in busy clinics and providers tend
to focus on treatment issues, physical symptoms, and signs of recurrence
(Olesen et al., 2015). Indeed, the health care system has been described as
deficient with regard to communication of emotional concerns among clini-
cians, patients, and their families (Chawla et al., 2016). In recent surveys,
cancer survivors reported suboptimal communication in addressing psycho-
social and emotional concerns, even among those who receive a survivor-
ship care plan that details the cancer diagnosis and treatment history, future
follow-up tests, and recommendations to manage a healthy lifestyle (Blanch-
Hartigan et al., 2016; Mazor et al., 2016). Among women with GYN cancer,
psychological distress and fear of cancer recurrence (FCR) are frequent con-
cerns; there are few resources or interventions to help them deal with these
issues (Dawson, Madsen, & Dains, 2016; Maheu et al., 2016). It is important
to understand the psychosocial concerns and risk factors that suggest the
need for supportive care to improve survivorship care and develop interven-
tions to support this growing population (Beesley et al., 2018). The purpose
of this study is to describe the QOL and supportive care needs of GYN
Reb and Cope 1387

cancer survivors who have recently completed primary treatment with a

focus on psychosocial concerns. This study is part of an ongoing longitudi-
nal descriptive study assessing the patterns of care and QOL of GYN cancer
survivors treated at a large comprehensive cancer center in the Southwest
United States.

QOL and Supportive Care Needs

QOL of GYN cancer survivors is generally good, especially in early stage
survivors (Gonzalez et al., 2017; Roland, Rodriguez, Patterson, & Trivers,
2013). However, many survivors continue to experience depression, physi-
cal impairment, and adverse QOL outcomes (Roland et al., 2013). The pres-
ence of physical symptoms, fatigue, depression, and impaired physical
function are associated with distress and poor QOL (Gonzalez et al., 2017;
Roland et al., 2013). In a study of the QOL of women with advanced stage
ovarian cancer, survivors with multiple recurrences had worse QOL in the
domains of physical and emotional well-being compared with survivors
with zero to one recurrences (Lutgendorf et al., 2017). A recent study of
GYN survivors diagnosed within the past 6 months identified risk factors for
impaired QOL and found that a subgroup of women reported below normal
QOL, persistent depressive symptoms, and more physical impairment over
time. Holding back from sharing concerns, intrusive thoughts, and taking
pain medication were associated with worse QOL and physical impairment
(Gonzalez et al., 2017).
A recent study compared women with GYN (n = 113) and breast cancer
(n = 897) (all stages) in relation to unmet needs for information and psycho-
social support. Overall, 40% of participants (GYN and breast cancer patients)
reported a need for psychosocial support. Women with GYN cancer reported
wanting information about psychological support significantly more often
and scored lower on global QOL and higher on depressive symptoms (M =
7.48, SD = 4.76) versus women with breast cancer (M = 6.7, SD = 4.47)
(Faller et al., 2017). Given the overall poorer prognosis and higher mortality
rates for some GYN cancers compared with breast cancer, results support the
need for ongoing psychosocial resources for women with GYN cancers.
According to a recent review of unmet supportive care needs of GYN
cancer survivors, the overall burden of needs is mainly lack of comprehen-
sive care and psychological concerns (Beesley et al., 2018). Risk factors for
unmet needs included younger age; more advanced disease; more recent
treatment; poor QOL or symptoms such as anxiety, depression, or insomnia;
less social support; and living in remote locations (Beesley et al., 2018). A
review of the psychosocial needs of ovarian cancer survivors found that they
1388 Western Journal of Nursing Research 41(10)

experience significant levels of depression and anxiety (Roland et al., 2013).

Another study of ovarian cancer survivors reported that higher disease stage,
younger age, preexisting mental health issues, and greater symptom burden
were associated with poorer mental health functioning. Further, women with
higher symptom burden or existing mental health conditions have lower
mental health-related QOL (Zhou et al., 2016).
In a review of the supportive care needs of cervical cancer survivors (all
stages), the most frequently cited unmet needs across studies included FCR,
concerns about body image, lack of sexual desire, pain, and difficulties in
relationship with partner. The single most prominent information need con-
cerned sexuality and intimacy issues. Other needs included information about
prognosis and side effects of treatment, especially for survivors less than 12
months posttreatment. Survivors who had recently completed treatment had
more concerns related to communication with the treatment team (Maguire,
Kotronoulas, Simpson, & Paterson, 2015).
A mixed method study of endometrial cancer survivors who had com-
pleted primary treatment within the past 2 years found that most women were
not given information about their risk of recurrence, late and long-term
effects of treatment, and how to access resources to manage these concerns.
Although women were satisfied with the coordination of their care and infor-
mation about symptoms to report, they struggled with managing unexpected
late effects such as sexual dysfunction, depression, and menopausal symp-
toms and were unaware of community services available to them (Jones
et al., 2012).
A survey of psychosocial support needs of 45 GYN cancer survivors
(average of 4 years since time of diagnosis) found that the most frequent
unmet needs were in existential survivorship and comprehensive care
domains. FCR was a primary unmet need and emotional well-being was the
strongest predictor of FCR (Urbaniec, Collins, Denson, & Whitford, 2011).
Strength of unmet needs was associated with psychological well-being as
well as symptoms of anxiety, depression, and posttraumatic stress disorder.
About 25% of the survivors reported the need for more communication
among doctors in coordinating their care and needing help to manage con-
cerns about the cancer recurring (Urbaniec et al., 2011). In a qualitative
study with GYN cancer survivors, women described unmet psychosocial
needs including guilt, changed sexual desire, chaos, and loss of self-confi-
dence. Furthermore, they experienced FCR and uncertainty about which
symptoms to report to their clinicians (Olesen et al., 2015). According to
recent reviews focusing on QOL, GYN cancer survivors’ greatest concern
was managing FCR (Dahl, Wittrup, Vaeggemose, Petersen, & Blaakaer,
2013; Maguire et al., 2015). FCR is associated with hypervigilance about
Reb and Cope 1389

Figure 1.  Quality of life model for cancer survivors.

Source. Adapted from Quality of Life Cancer Survivor Model, City of Hope Pain & Palliative
Care Resource Center (https://prc.coh.org/).

symptoms, intrusive thoughts and uncertainty about the future; unhelpful

coping behaviors, and fears preceding follow-up tests and appointments
(Simonelli, Siegel, & Duffy, 2017).
In summary, studies suggest that GYN cancer survivors experience anxi-
ety, depression, FCR, and some experience poor QOL (Beesley et al., 2018;
Dahl et al., 2013; Faller et al., 2017; Gonzalez et al., 2017; Maguire et al.,
2015; Olesen et al., 2015; Roland et al., 2013). Furthermore, GYN cancer
survivors express the need for information about their risk of recurrence,
prognosis, late and long-term effects of treatment, and available community
services (Jones et al., 2012; Maguire et al., 2015).

Conceptual Framework
This study is guided by The City of Hope QOL-Cancer Survivor model
encompassing the domains of physical, psychological, social, and spiritual
well-being (Figure 1). This model was developed based on interviews and
focus groups with cancer survivors and includes both positive and negative
aspects of surviving cancer (B. R. Ferrell, Dow, & Grant, 1995; B. R. Ferrell,
Dow, Leigh, Ly, & Gulasekaram, 1995). Examples of symptoms associated
with the physical domain include fatigue, pain, sleep, and sexual issues.
1390 Western Journal of Nursing Research 41(10)

Symptoms/concerns associated with the psychological domain include anxi-

ety, depression, distress, FCR, uncertainty, and cognition. Social well-being
encompasses roles and relationships, family caregiver issues, finances, and
employment. Spiritual well-being encompasses the search for meaning, reli-
giosity, hopefulness, and transcendence (B. R. Ferrell et al., 1995). The model
assumes that patients with GYN cancer may experience symptoms or con-
cerns that are disease and treatment related, and these symptoms may impact
QOL across other domains. The model is holistic and accounts for the inter-
relationship between symptoms and domains. For example, interventions tar-
geting symptoms or concerns in one or more domains may affect other
symptoms or domains and overall QOL.

Purpose
Women with GYN cancer are living longer as a result of improved treatments
including the use of targeted treatments and immunotherapies. Many survi-
vors are trying to manage late and long-term side effects. Optimal survivor-
ship care requires an understanding of the patient’s psychosocial symptoms
and QOL concerns. Only then, can interventions and survivorship programs
effectively address the needs of this growing population. This study explored
QOL and unmet needs of GYN cancer survivors during the early survivor-
ship period, focusing on psychosocial concerns.

Method
Design
This was a descriptive study of QOL and unmet needs of GYN cancer survi-
vors who were being treated at a freestanding, National Cancer Institute–
designated comprehensive cancer center in southern California. Women with
an initial diagnosis of GYN cancer within 7 months of completing primary
treatment, without evidence of recurrent disease, were eligible. Patients were
recruited from the medical and surgical oncology ambulatory clinics.
Participants completed self-report questionnaires assessing their QOL and
unmet needs. Content analysis was used to analyze the responses to the open-
ended question on the unmet needs survey.

Data Collection/Measures
Investigators developed demographic and clinical data forms to collect par-
ticipant baseline information including disease status, comorbidities, and
Reb and Cope 1391

medications. Two advance practice nurses (APNs) completed the clinical

data form based on medical record review. The QOL-Cancer Survivor tool
was used to assess QOL (B. R. Ferrell et al., 1995). This instrument includes
41 items representing the four domains of QOL: physical, psychological,
social, and spiritual well-being. Items are scored on a 0 to 10 Likert-type
scale and higher scores indicate better QOL. Scores can be categorized as low
(0-3), moderate (4-6), and high (7-10) with high representing the best QOL
outcomes. According to the tool developer, item scores of 4 or less suggest a
need for further assessment or intervention. The internal consistency ranges
from .71 to .89 for the subscales and .93 for the overall score. Cronbach’s α
for the current study was .91 for global QOL and .84, .92, .86, and .69 for the
physical, psychological, social, and spiritual subscales, respectively.
The Cancer Survivors’ Unmet Needs (CaSUN) Survey was used to assess
supportive care needs of study participants over the past month (Hodgkinson
et al., 2007). The survey consists of 35 multiple-choice questions in which
respondents are asked to check whether there is “no need” or “some need” in
a particular area; those who indicate “some need” rate the strength of the need
as weak (1), moderate (2), or strong (3). The survey also included one open-
ended question. Twenty-eight need items are categorized into five domains or
areas of need: (a) existential survivorship (14 items), (b) comprehensive can-
cer care (six items), (c) information (three items), (d) QOL (two items), and
(e) relationships (three items). Seven separate items address complementary
therapy, fertility problems, employment/financial support, insurance, legal
services, and case manager. These remaining seven items are labeled “Other.”
The total score reflects the total number of unmet needs reported with higher
scores indicating greater need (range = 0-35). Domains are scored by sum-
ming those items and reporting the average number of needs in the domain.
Cronbach’s α was .96 when tested in mixed cancer survivor populations;
construct validity was supported by significant correlations between CaSUN
scores and variables thought to influence level of need, including QOL, anxi-
ety, and depression scores (Hodgkinson et al., 2007). Cronbach’s α for the
current study was .96 for the overall score and .97, .92, .77, .85, and .89 for
the existential, comprehensive care, information, QOL, and relationship
domains, respectively.

Procedures
The study protocol was approved by the institutional review board and writ-
ten informed consent was obtained from all study participants. Participants’
electronic medical records were screened for eligibility. The research coordi-
nator (RC) and APN reviewed weekly appointment schedules of six GYN
1392 Western Journal of Nursing Research 41(10)

oncology providers and the RC confirmed participant eligibility with the

GYN provider. The RC met with most participants during the initial post-
treatment follow-up visit to explain the study procedures and obtain consent.
Participants completed the web-based demographic form, Quality of Life–
Cancer Survivors (QOL-CS), and CaSUN surveys at a period of 3 months
from time of enrollment. This time period was selected as we anticipated
consenting most patients at their end of treatment visit, allowing a recovery
period from surgery or other treatment which could impact their QOL and
unmet need scores. The Research Electronic Data Capture (REDCap) Internet
platform was used for data collection and management. Participants who did
not have access to a computer completed paper questionnaires. The RC
tracked survey completion on REDCap and emailed or phoned participants
as needed to remind them to complete the surveys.

Analysis Plan
Patient characteristics were reported as frequencies and percentages for cat-
egorical variables and median and range for continuous data. QOL instru-
ment scores were reported using means and standard deviations. Data from
the CaSUN instrument were summarized using mean and standard deviation
for the number and strength of each need. At the subject level, average
strength of unmet needs within each domain was calculated using all ques-
tions which were answered with a 1 (weak), 2 (moderate), or 3 (strong) within
the domain. Frequency and average strength of the most common unmet
needs were reported. QOL and CaSUN results were provided for the entire
cohort as well as stratified by type of GYN cancer (endometrial, ovarian, and
all other gynecological cancers). All instruments were scored according to
instructions provided by the developer. SAS 9.4® was used for statistical
analyses.

Results
Demographics/Clinical Information
Demographic and clinical information are listed in Table 1. A convenience
sample of 34 participants was enrolled over a 7-month period and had com-
pleted baseline questionnaires. The majority of participants were Caucasian
(68%) with a median age of 60 years (range = 28-76). The participant sam-
ple consisted of endometrial cancer (50%), ovarian (29%), cervical (15%),
and vulvar (6%). The majority were diagnosed with Stage I or II disease
(59%), and most GYN cancer patients were treated with both surgery and
Reb and Cope 1393

Table 1.  Clinical and Sociodemographic Characteristics.

Total (N = 34)

Variable N (%)
Age at enrollment, Mdn (range) 60 (28-76)
Race
  American Indian 1 (2.9)
 Asian 4 (11.8)
 Black 1 (2.9)
 White 23 (67.6)
  Multiple races 1 (2.9)
  Don’t know or declined to answer 4 (11.8)
Hispanic or Latino
 Yes 8 (23.5)
 No 25 (73.5)
  Declined to answer 1 (2.9)
Education level
  Up to high school graduate or equivalency 11 (32.3)
  Some college or trade school 10 (29.0)
  Bachelor’s degree 6 (17.6)
  Graduate or professional degree 7 (20.6)
Employment status
  Unemployed, homemaker, or volunteer 7 (20.6)
  Employed full time 12 (35.3)
  Employed part time 5 (14.7)
 Retired 9 (26.5)
  Medical leave from employer 1 (2.9)
  Hours per week, Mdn (range) 15 (0-48)
Marital status
  Never married 8 (23.5)
 Married/partnered 20 (58.8)
  Divorced or widowed 6 (17.6%)
Household income
  Under US$20,000 2 (5.9)
  US$20,000 to US$60,000 6 (17.6)
  US$60,001 to US$100,000 8 (23.5)
  More than US$100,000 11 (32.4)
  Declined to answer 7 (20.6)
Primary care provider
 Yes 26 (76.5)
 No 8 (23.5)
(continued)
1394 Western Journal of Nursing Research 41(10)

Table 1.  (continued)

Total (N = 34)

Variable N (%)
Diagnosis
 Endometrial 17
 Ovarian 10
 Cervical 5
 Vulvar 2
Time since diagnosis (months)
  M (SD) 9.4 (4.2)
 Range 2-16.5
Time since end of treatment (months)
  M (SD) 3.9 (2.3)
 Range 1.3-10.6
Stage
 I 18 (52.9)
 II 2 (5.9)
 III 10 (29.4)
 IV 4 (11.8)
Treatment received
 Surgery 33 (97.1)
 Chemo 20 (58.8)
 Radiation 6 (17.6)
Comorbidities
  M (SD) 2 (1.9)
  Mdn (range) 1 (0-7)
 Anxiety 3
  Autoimmune disorder 3
  Cardiac arrhythmia (tachycardia) 1
 Depression 5
 Diabetes 6
  Heart attack 2
  High blood pressure 13
  High cholesterol 8
  Lung disease 2
 Osteoarthritis 1
 Osteoporosis 6
  Other cancer 5
  Other conditions 13
(continued)
Reb and Cope 1395

Table 1.  (continued)

Total (N = 34)

Variable N (%)
Distance traveled for care
  Less than 10 miles 6 (17.6)
  10 to 20 miles 6 (17.6)
  21 to 30 miles 3 (8.8)
  31 to 40 miles 6 (17.6)
  41 to 50 miles 7 (20.6)
  More than 50 miles 6 (17.6)
Smoke currently or ever
 No 27 (79.4)
 Yes 7 (20.6)
Packs per day smoked, Mdn (range) 1 (0-2)
Years smoked, Mdn (range) 10 (4-68)

chemotherapy. The mean number of comorbidities was 2 (SD = 1.9). The

mean time since diagnosis and end of primary treatment were 9.4 (SD = 4.2)
and 3.9 (SD = 2.3) months, respectively. The majority traveled greater than
30 miles to receive their cancer care.

QOL
The average QOL scores are shown in Table 2. Overall QOL for the entire
sample was in the moderate range (M = 6.4, SD = 1.6). Of the four domains,
the mean scores for physical domain were the highest range for QOL (M = 7.1,
SD = 1.9), followed by spiritual (M = 6.8, SD = 1.8), social (M = 6.4,
SD = 2.3), and psychological (M = 5.9, SD = 1.8). Women with ovarian
cancer (n = 10) scored the lowest in the psychological domain, indicating
lower QOL (M = 5.2, SD = 2.0). Overall the 34-participant sample reported
coping well with their illness (M = 7.3, SD = 2.4); feeling happy (M = 7.9,
SD = 1.9); feeling hopeful (M = 8.0, SD = 2.6); and having sufficient sup-
port from others (M = 8.5, SD = 2.3). Table 3 presents QOL mean item
scores ranked from lowest to highest QOL. The top 5 lowest ranking items
were (a) distress resulting from initial diagnosis (M = 1.7, SD = 2.5), (b)
distress resulting from treatment (M = 2.8, SD = 3.1), (c) illness causing
family distress (M = 3.7, SD = 3.1), (d) FCR (M = 4.4, SD = 3.2), and (e)
uncertainty about the future (M = 4.8, SD = 3.3). Other concerns ranking in
1396 Western Journal of Nursing Research 41(10)

Table 2.  QOL: Average QOL Scores by Domain.

Physical Psychological Social Spiritual Total QOL

(8 Items) (18 Items) (8 Items) (7 Items) (41 Items)

  M (SD) M (SD) M (SD) M (SD) M (SD)

Disease site
 Endometrial 7.1 (2.1) 6.2 (1.6) 6.6 (1.9) 6.6 (1.8) 6.5 (1.4)
(n = 17)
 Ovarian 7.3 (1.4) 5.2 (2.0) 6.1 (2.9) 7.1 (2.0) 6.1 (1.9)
(n = 10)
 Other 6.8 (2.2) 6.1 (2.0) 6.4 (2.5) 7.0 (1.5) 6.4 (1.6)
(n = 7)a
  All patients 7.1 (1.9) 5.9 (1.8) 6.4 (2.3) 6.8 (1.8) 6.4 (1.6)
(N = 34)

Note. Average score in each domain (total) calculated using all reported items within domain.
All scores range from 0 to 10, with higher scores indicating better quality of life.
QOL = quality of life.
a.Other category includes cervical (5) and vulvar (2).

the top 10 lowest scoring items (indicating low QOL) included fear of metas-
tasis, second cancer, and future tests; changes in appearance; and aches or
pains. These 10 lowest ranking items primarily represented the psychological
domain (n = 7); other items represented the social (n = 1), spiritual (n = 1),
and physical (n = 1) domains. The mean item score for anxiety was 5.8
(SD = 3.2) and depression 7.7 (SD = 2.4).

CaSUN
Overall, the mean number of unmet needs for all survivors was 7.7 (SD = 8.8,
range = 0-35) and the average strength of unmet needs was 1.6 (SD = 0.6).
The mean number of unmet needs in each domain was as follows: existential
survivorship 3.1 (SD = 4.6, range = 0-14); comprehensive cancer care 1.6
(SD = 2, range = 0-6); information 0.6 (SD = 2.0, range = 0-3); QOL 0.7
(SD = 0.8, range = 0-2); and relationships 1.6 (SD = 0.7, range = 0-3).
Table 4 reports the most frequently reported unmet needs and the average
strength of the unmet need. Unmet needs reported by at least 30% of the
sample included the following: (a) needing help to reduce stress (n = 15), (b)
needing reassurance that providers talk to each other (n = 14), (c) needing
help to manage side effects (n = 13), (d) needing help to manage concerns
about recurrence (n = 12), (e) needing assurance they were receiving the
very best medical care (n = 11), (f) needing access to complementary
Reb and Cope 1397

Table 3.  QOL Mean Scores and Ranking Order (N = 34).

Rank QOL Item Domain Item Score, M (SD)

 1 Distress of initial diagnosis Psychological 1.7 (2.5)
 2 Distress of cancer treatment Psychological 2.8 (3.1)
 3 How distressing illness has been Social 3.7 (3.1)
for family
 4 Fearful of recurrence Psychological 4.4 (3.2)
 5 Uncertainty about future Spiritual 4.8 (3.3)
 6 Fearful of metastasis Psychological 4.9 (3.5)
 7 Fearful of second cancer Psychological 5.0 (3.1)
 8 Fearful of future tests Psychological 5.2 (3.2)
 9 Changes in appearance Psychological 5.3 (3.8
10 Aches or pains Physical 5.4 (3.1)
11 Anxiety level Psychological 5.8 (3.2)
12 Financial burden Social 5.8 (3.2)
13 Illness caused positive changes Spiritual 5.8 (3.3)
14 Distress since treatment Psychological 5.9 (2.8
completed
15 Illness caused changes in self- Psychological 5.9 (3.2)
concept
16 Fatigue Physical 5.9 (2.8)
17 Sexuality impacted by illness Social 6.0 (3.7)
18 Sleep changes Physical 6.2 (3.3)
19 Importance of other spiritual Spiritual 6.2 (3.6)
activities such as meditation
20 Illness interferes with employment Social 6.4 (3.8)
21 Overall physical health Physical 6.5 (2.2)
22 Concentration and memory Psychological 6.6 (2.4)
23 Illness interferes with activities Social 6.6 (3.1)
24 Feeling in control of things Psychological 6.9 (2.5)
25 How much has your spiritual life Spiritual 7.0 (3.5)
changed as a result of diagnosis
26 Health care interferes with Social 7.1 (3.3)
relationships
27 Feeling isolated due to illness or Social 7.1 (3.3)
treatment
28 Difficulty coping as result of Psychological 7.3 (2.4)
disease
29 How good is quality of life Psychological 7.3 (2.4)
30 Feel useful Psychological 7.5 (2.4)
(continued)
1398 Western Journal of Nursing Research 41(10)

Table 3.  (continued)

Rank QOL Item Domain Item Score, M (SD)

31 Depression Psychological 7.7 (2.4)
32 Life is satisfying Psychological 7.8 (1.9)
33 Appetite change Physical 7.8 (2.9
34 How much happiness Psychological 7.9 (1.9)
35 Have purpose in life Spiritual 7.9 (2.6)
36 How important is participation in Spiritual 7.9 (2.7)
religious activities
37 Feel hopeful Spiritual 8.0 (2.6)
38 Constipation Physical 8.2 (2.4)
39 Support from others is sufficient Social 8.5 (2.3)
40 Menstrual changes or fertility Physical 8.8 (2.7)
41 Nausea Physical 8.9 (2.2)

Note. QOL scores range from 0 to 10 with higher scores indicating better quality of life.
Number of items in each domain: physical (8), psychological (18), social (8), and spiritual (7).
QOL = quality of life.

therapies (n = 11), and (g) needing help to adjust to changes in their body
(n = 11). These highly ranked items were primarily in the existential survi-
vorship category (n = 3), followed by comprehensive cancer care (n = 2),
QOL (n = 1), and “Other” (complementary therapies, n = 1). The strongest
unmet need ratings (mean strength rating of 2 or 3) among the subsample
endorsing those items included the following: (a) complaints about my care
being addressed, (b) the best medical care, (c) having local health services
available when needed, (d) ongoing case manager to find out about services
when needed, (e) information provided in a way I can understand, and (f)
adjusting to changes in my QOL. The 10 strongest unmet needs categorized
by domain were (a) existential survivorship (n = 3), (b) comprehensive can-
cer care (n = 3), (c) information (n = 2), (d) QOL (n = 1), and (e) “Other”
(ongoing case manager; n = 1). In the existential category, 21% of the sample
indicated a moderate to high need for emotional support and help to deal with
others’ expectations of being a “cancer survivor.”
Six participants responded to the open-ended question on the CaSUN
unmet needs tool: “Please list any other needs that you have experienced in the
last month.” The answers related to information needs, emotional and psycho-
social concerns, and physical symptoms. Three participants reported informa-
tion needs, stating, “I have more questions on the causes of cancer. . . . What
changes I can make in my life to prevent recurrences”; another reported the
 Table 4.  CaSUN: Most Frequently Reported Unmet Needs and Mean Strength of Need (N = 34).
No. (%) Mean Strength % With Moderate
CaSUN Unmet Need Reporting of Need Ratinga or High Unmet
Rank I need . . . Domaina Unmet Need (1-3) Needs (2-3)

1 Help to reduce stress in my life Existential 15 (44) 1.5 46.7

2 To know that all my providers talk to each other Comprehensive care 14 (41) 2 57.1
3 Help to manage ongoing side effects/complications Quality of life 13 (38) 1.5 46.2
4 Help to manage concerns about recurrence Existential 12 (35) 1.6 33.3
5 The very best medical care Comprehensive care 11 (32) 2.5 81.8
5 Access to complementary/alternative therapies Other 11 (32) 1.8 54.5
5 Help to adjust to changes to the way I feel about my Existential 11 (32) 1.6 45.5
body
6 Local health care services that are available when I need Comprehensive care 10 (29) 2.2 80.0
them
6 Help to adjust to changes in my quality of life Quality of life 10 (29) 1.7 60.0
7 Ongoing case manager to find out about services needed Other 9 (27) 2 66.7
7 Help to address problems with sex life Relationship 9 (27) 1.9 44.4
7 Information provided in a way I can understand Information 9(27) 1.8 66.7
8 Complaints regarding my care addressed Information 8 (24) 2.5 87.5
8 Up to date information Information 8 (24) 1.8 50.0
8 Help to make decisions about my life in context of Existential 8 (24) 1.4 25.0
uncertainty
9 Help dealing with my/others expectations of me as a Existential 7 (21) 2 57.1
“cancer survivor”
9 Emotional support provided to me Existential 7 (21) 1.7 57.1
9 Help to cope with changes in beliefs that nothing bad will Existential 7 (21) 1.7 57.1
ever happen

Note. Cancer survivors unmet needs survey domains: existential survivorship (14 items), comprehensive cancer care (six items), information (three items), quality of life

1399
(two items), relationships (three items), Other (seven items). CaSUN = cancer survivors’ unmet needs.
a.Mean strength of need rating ranges from 1 to 3 (1 = weak, 2 = moderate, 3 = strong).
1400 Western Journal of Nursing Research 41(10)

need for nutritional information: “. . . in order to know what to eat to be

healthy.” One participant stated, “I need to know that my concerns regarding
my . . . visit have been addressed.” In the emotional area, one participant
expressed concern about the decreased frequency of her son’s visits, stating, “I
pray and ask God to bring back my loving, caring son and (the close relation-
ship) we once had.” Another participant expressed feeling isolated as a result
of cancer treatment stating “I was on house isolation for 3 1/2 months during
most of chemo and the flu epidemic. . . . I am alone most of the time. I have to
force myself to look presentable to walk outside my door.” Two participants
reported physical needs, stating, (I have) “been tired and weak”; and “I have
need for assistance when I have physical setbacks” referring to a rib injury she
experienced. Qualitative responses and CaSUN areas of need (domains) fur-
ther paralleled the results of the quantitative findings.

Discussion
The purpose of this study was to describe the QOL and supportive care needs
of GYN cancer survivors who have recently completed primary treatment for
GYN cancer. The study was guided by The City of Hope QOL-Cancer
Survivor model encompassing the domains of physical, psychological, social,
and spiritual well-being. Previous research suggests that although QOL for
gynecological survivors appears to improve over time, many psychological
and psychosocial issues are reported that alter QOL and produce distressing
symptoms (Dahl et al., 2013; B. Ferrell, Smith, Cullinane, & Melancon,
2003; Roland et al., 2013). Participants of the current study reported a moder-
ate to high overall QOL score of 6.4 and a moderate QOL of 5.9 in the psy-
chological domain during the early survivorship period. The small sample
size limits the ability to compare results among the different GYN cancer
types, but overall and domain-specific QOL scores were similar among the
disease groups. In contrast, women with ovarian cancer (n = 10) reported
lower QOL scores in the psychological domain (5.2 out of 10). This may be
because most ovarian cancer survivors are diagnosed with advanced disease,
undergo aggressive therapies, and their overall prognosis is poor. Similarly,
other studies reported that many ovarian cancer survivors experience
increased distress, and persistent psychological and physical symptoms com-
pared with other cancer survivors (Ahmed-Lecheheb & Joly, 2016; Roland
et al., 2013).
In the QOL-CS data, participants reported concerns in the psychological/
existential domain that included distress of the diagnosis and treatment, FCR
and metastasis, fear of a second cancer, fear of future tests, and changes in
appearance. GYN survivors frequently report needing help dealing with FCR
Reb and Cope 1401

(Dahl et al., 2013; Maguire et al., 2015). FCR is a significant issue for both
early- and late-stage ovarian cancer survivors and can persist for years after a
diagnosis and adversely impact QOL (Kornblith et al., 2010; Ozga et al.,
2015; Roland et al., 2013). In a recent study of survivors of cervical, uterine,
and ovarian cancer, FCR was similar among the different cancer types but
was greater for those younger in age and with a shorter disease-free interval
of 2 to 5 years (Sam, 2018). Other domains represented in the top 10 lowest
QOL items for participants of the current study were illness distress for fam-
ily in the social domain, uncertainty about the future in the spiritual domain,
and reported aches or pains in the physical domain.
Various studies report an association between lower QOL for survivors
reporting pain, fatigue, and other symptoms (Roland et al., 2013; Zhou et al.,
2016). Conversely, several domains suggested that survivors experienced
good QOL. Participants reported feeling hopeful, finding meaning in reli-
gious activities and spiritual life in the spiritual domain and feeling happy,
useful, and satisfied in life in the psychological domain. Spiritual growth and
strengthened personal relationships have been reported in survivors of GYN
cancer (Lutgendorf et al., 2017; Roland et al., 2013).
Findings from the CaSUN suggested that the greatest needs, identified in
the existential domain, were help to reduce stress; make decisions in life in
the context of uncertainty; manage concerns about recurrence; and adjust to
changes in feelings about their body. In addition, 21% of the sample indicated
a need for emotional support; help in dealing with others’ expectations of
being a “cancer survivor”; and coping with changes in beliefs that nothing
bad will ever happen. The strength rating was high for the majority of this
subsample who endorsed the above items (58%). Similar to the prominent
theme of FCR reported in the QOL data, the needs reported by these GYN
cancer survivors reflect feelings of trepidation and pleas for support and
information, as they adjusted to a new way of living.
In the comprehensive care domain, participants reported the need for the
very best medical care, including providers that talk to each other, and for
local health services that are available when they need them. Up-to-date,
easily understood information and information addressing complaints about
their care were rated as a moderate to high need for over 50% of this sample.
Papadakos et al. (2012) assessed the informational needs of GYN cancer
survivors including the importance of information; the amount of informa-
tion desired and preferred mode of delivery; and identified six informational
need areas including medical, practical, physical, emotional, social, and
spiritual (Papadakos et al., 2012). Overall, respondents placed more impor-
tance on receiving medical information, preferring education modalities
consisting of pamphlets, one-on-one discussions with health care
1402 Western Journal of Nursing Research 41(10)

professionals, and websites. Other studies support that women with GYN
cancer desire information about and a need for psychosocial support (Faller
et al., 2017).
Several limitations were noted for the current study. The study used a
small convenience sample that included a diverse group of GYN cancer types
and stages of disease. The sample included participants who had recently
completed treatment capturing data at a single time point; the needs of survi-
vors may be different over an extended survival period. The majority of par-
ticipants were white, well-educated, with household income over US$60,000
per year, thereby limiting generalizability of these findings to other popula-
tions. The sample was heterogeneous and consisted of endometrial, ovarian,
cervical, and vulvar cancers and ranged from Stage I to Stage IV disease.
Although most patients were treated with both surgery and chemotherapy,
treatment regimens and overall prognosis varied which may influence the
type of symptoms noted and participants’ psychosocial concerns. Although
the sample size was too small to make quality of life comparisons across
disease stages, we plan to examine these factors by stage of disease and diag-
nosis on completion of the larger ongoing study.
For this sample of GYN cancer survivors, FCR was a repetitive theme in
both the QOL and the CaSUN data. Oncology nurses are in a key position to
assess survivors’ needs and QOL, and discuss their fears, uncertainties about
the future, and need for psychosocial services. Although FCR is a normal part
of the cancer experience, research supports that high levels at baseline predict
long-term FCR (Simard et al., 2013). Nurses and other providers should rou-
tinely assess for distress to identify patients struggling with FCR and other
existential concerns. Referrals for counseling with social workers, mental
health professionals, and chaplains may help survivors to normalize their
experiences and deal with their fears. Interventions should be tailored to sur-
vivor needs and may include education about support groups and community
services; coping strategies; and relaxation- and mindfulness-based practices.
Cognitive behavior therapies and meditation have been found to be effective
in decreasing anxiety and depression for patients with cancer (Greenlee et al.,
2017; Zhang et al., 2015).
Similar to other studies, QOL was generally good in our sample. Our find-
ings are also similar to other studies that showed the need for coordinated
comprehensive cancer care and support for emotional and existential con-
cerns. Nurse led-survivorship clinics would be beneficial to address QOL,
emotional concerns, and information needs. Nurses should incorporate evi-
dence-based behavioral and self-management strategies including problem-
solving, decision-making, goal-setting, and communication skills coaching
in the delivery of survivorship care. In addition, these clinics should extend
Reb and Cope 1403

beyond patients to provide coaching and supportive services to caregivers

expressing distress. Furthermore, survivorship care plans should include con-
tent on psychosocial and emotional concerns such as FCR including resources
and support services for managing these concerns.
Participants of this study reported finding meaning in religious activities
and spiritual life. Nurses should explore religious and spiritual supports with
survivors as this may bring comfort during this period of uncertainty and
adjustment. Participants also expressed needing help in dealing with others’
expectations of being a “cancer survivor.” Nurses can facilitate open discus-
sions with family members and other caregivers, elicit their fears and con-
cerns, and provide education about common concerns faced by the cancer
survivors.
The current study adds to the body of knowledge regarding QOL and
unmet needs in GYN cancer survivors who have recently completed treat-
ment. Despite the heterogeneity in cancer type and stages in this study, com-
mon themes emerged that suggest a need for psychosocial support, information
provision, and coordination of care including increased availability of local
support services. Future research should focus on nurse-led survivorship care
models and interventions for FCR and survivor adjustment.

Acknowledgments
The authors thank Nancy Guerrero-Llamas, MPH, and Maria De Castro, RN, for
assistance with recruitment and data collection; and Nora Ruel, MA, for consultation
and statistical analysis.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.

Funding
The author(s) received no financial support for the research, authorship, and/or publi-
cation of this article.

ORCID iD
Anne M. Reb https://orcid.org/0000-0002-9223-3519

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