A Systematic Review of The Supportive Care Needs of Women Living With

Gynecologic Oncology 136 (2015) 478490
Contents lists available at ScienceDirect
Gynecologic Oncology
journal homepage: www.elsevier.com/locate/ygyno
Review
A systematic review of the supportive care needs of women living with

and beyond cervical cancer
Roma Maguire a,, Grigorios Kotronoulas a, Mhairi Simpson b, Catherine Paterson c
a
b
c
School of Health Sciences, University of Surrey, Guildford, Surrey, UK

NHS Lanarkshire, Lanarkshire, UK
Ninewells Hospital, NHS Tayside, Dundee, UK
H I G H L I G H T S
A predominant focus on sexuality/intimacy and information seeking needs is noted, despite a host of additional needs.
Over-time variation of these needs throughout the cancer trajectory requires investigation.
The effects of age, race/ethnicity, disease stage or treatment modality warrant future investigation.
a r t i c l e
i n f o
Available online 20 November 2014

Keywords:
Supportive care needs
Cervical cancer
Unmet needs
Patient-centred care
Systematic review
a b s t r a c t
Background. Women with cervical cancer constitute a patient population in need for ongoing, person-centred
supportive care. Our aim was to synthesise current available evidence with regard to the supportive care needs of
women living with and beyond cervical cancer.
Methods. A systematic review was conducted according to the PRISMA Statement guidelines. Seven electronic
databases (DARE, Cochrane, MEDLINE, CINAHL, BNI, PsychINFO and EMBASE) were searched to identify studies
employing qualitative and/or quantitative methods. Pre-specied selection criteria were applied to all records
published between 1990 and 2013. Methodological quality evaluation was conducted using the standardised
QualSyst evaluation tool. Findings were integrated in a narrative synthesis.
Findings. Of 4936 references initially retrieved, 15 articles (13 unique studies) met eligibility criteria. One
study fell below a pre-specied 55% threshold of methodological quality and was excluded. Individual needs
were classied into ten domains of need. Interpersonal/intimacy (10; 83.3%), health system/information (8;
66.7%), psychological/emotional (7; 58.3%) and physical needs (6; 50%) were those most frequently explored.
Spiritual/existential (1; 8.3%), family-related (2; 16.7%), practical (2; 16.7%), and daily living needs (2; 16.7%)
were only rarely explored. Patientclinician communication needs and social needs were addressed in 4 studies
(33.3%). Dealing with fear of cancer recurrence, concerns about appearance/body image, lack of sexual desire, requiring more sexuality-related information, dealing with pain, and dealing with difculties in relationship with
partner were the most frequently cited individual needs (4 studies).
Conclusions. Despite a host of additional needs experienced by women with cervical cancer, a predominant
focus on sexuality/intimacy and information seeking issues is noted. Study limitations preclude drawing conclusions as to how these needs evolve over time from diagnosis to treatment and subsequently to survivorship.
Whether demographic or clinical variables such as age, race/ethnicity, disease stage or treatment modality
play a moderating role, only remains to be answered in future studies.
2014 Elsevier Inc. All rights reserved.
Contents
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
479
479
479
Corresponding author at: Faculty of Health and Medical Sciences, School of Health Sciences, University of Surrey, Standard Buildings, Ofce 2.4, 94 Hope Street, Glasgow, G2 6PH, UK.
E-mail address: r.maguire@surrey.ac.uk (R. Maguire).
http://dx.doi.org/10.1016/j.ygyno.2014.10.030
0090-8258/ 2014 Elsevier Inc. All rights reserved.
R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490
Inclusion criteria . . . . . . . . . . . . . . . .
Exclusion criteria . . . . . . . . . . . . . . .
Study selection and data extraction procedures . .
Study methodological quality evaluation . . . . .
Operational denitions of domains of need . . . .
Synthesis of study ndings . . . . . . . . . . .
Findings . . . . . . . . . . . . . . . . . . . . . .
Search results . . . . . . . . . . . . . . . . .
Study characteristics and methodological quality .
Characteristics of the study samples . . . . . . .
Evidence on SCNs by domain of need . . . . . .
Physical needs . . . . . . . . . . . . .
Psychological/emotional needs . . . . . .
Family-related needs . . . . . . . . . .
Social needs . . . . . . . . . . . . . .
Interpersonal needs/intimacy concerns . .
Practical needs . . . . . . . . . . . . .
Daily living needs . . . . . . . . . . . .
Spiritual/existential needs . . . . . . . .
Health system/information needs . . . . .
Patientclinician communication needs . .
Most and least frequently reported/addressed needs
Discussion . . . . . . . . . . . . . . . . . . . . .
Summary and critique of evidence . . . . . . . .
Review strengths and limitations . . . . . . . .
Implications . . . . . . . . . . . . . . . . . . . .
Implications for research . . . . . . . . . . . .
Implications for clinical practice . . . . . . . . .
Conclusions . . . . . . . . . . . . . . . . . . . .
Conict of interest statement . . . . . . . . . . . .
Funding source . . . . . . . . . . . . . . . . . . .
Acknowledgments . . . . . . . . . . . . . . . . .
References . . . . . . . . . . . . . . . . . . . . .
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.
Introduction
Worldwide, cervical cancer is the most common type of
gynaecological cancer, accounting for approximately 8% (527,624
cases in 2012) of all female malignancies, second only to breast and colorectal cancer [1]. The incidence of cervical cancer varies, with more
than 85% of the global burden of the disease occurring in low-tomedium resource countries and the lowest incidence rates observed
in high-resource countries following the introduction of screening
programmes and timely access to treatment [2]. Despite recent advances in the identication and management of cervical cancer, Dizon
et al. [2] argue that much progress is still required to improve the outcomes for women diagnosed with invasive cervical cancer (p. 2282).
Whilst such statements are warranted, it may be argued that linked to
advances in the medical management of cervical cancer is a need to address the supportive care needs (SCNs) of this patient group [3]. Indeed,
the diagnosis of a potentially life-threatening disease, coupled with the
effects of invasive and prolonged treatments, often results in a wide
array of short- and long-term sequelae that are known to have a negative impact on patient outcomes [3].
Supportive care is a person-centred approach to the provision of
the necessary services for those living with or affected by cancer to
meet their informational, emotional, spiritual, social, or physical needs
during their diagnostic, treatment, or follow-up phases encompassing
issues of health promotion and prevention, survivorship, palliation,
and bereavement [46]. SCNs have been dened as requirements for
patient care that relate to the management of symptoms and sideeffects, enablement of adaption and coping, optimisation of understanding and informed decision-making, and minimisation of functional deficits [7]. Identifying and addressing such needs can prevent patient
distress, poor quality of life, and dissatisfaction with care [8], as well
as resultant increases in health care utilisation and costs [9]. This
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seems to be of particular importance for women with cervical cancer

given that, compared to women with other gynaecological cancers,
this patient group has been shown with worse emotional distress and
quality of life [10]. Potential reasons may include their younger age, contextual or cultural barriers, or the need to undergo integrated therapies
and aggressive surgical procedures [11,12]. Admittedly, research in this
area is still in its infancy. Nevertheless, to improve the quality of care
provided, it is paramount that women's needs in the context of cervical
cancer are clearly understood and steps to increase clinical knowledge
and provide direction for future research are conceptualised.
The aim of this systematic literature review was to synthesise current available evidence with regard to the SCNs of women living with
and beyond cervical cancer, driven by the following research questions:
What is the current evidence with regard to the different domains of
SCNs in women living with cervical cancer?
What are the most frequently and what are the least frequently individual needs and domains of need addressed/reported in the current
available literature?
Methods
This systematic review was conducted according to the Preferred
Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)
guidelines published in 2009 [13].
Search strategy
Seven electronic databases (DARE, Cochrane, MEDLINE, CINAHL,
BNI, PsychINFO and EMBASE) were searched through a two-step systematic search strategy that was devised to identify studies employing
qualitative and/or quantitative methods. A wide range of keywords
480
Table 1
Working denitions for the 11 domains of need.
Domain of need
Denition
Expressed needs/concerns pertinent to (the)
Physical needs
Psychological/emotional needs
Family-related needs
Social needs
Interpersonal/intimacy needs
Practical needs
Daily living needs
Spiritual/existential needs
Health system/information needs
Patientclinician communication needs
Cognitive needs
Experience of physical symptoms such as pain, fatigue, dry mouth, insomnia, sleepiness etc.
Experience of psychological/emotional symptoms such as depressive mood, anxiety, fear/worry, despair etc.
Experience of dysfunctional family relationships, fears/concerns for family future etc.
Experience of situations such as isolation, inefcient social support, diminished socialisation etc.
Experience of altered body image, altered sexuality, sexual health problems, compromised intimacy with partner, fertility etc.
Situations such as transportation, living will, out-of-hours accessibility, funeral care, nancial strain etc.
Experience of restriction in daily living tasks such as housekeeping, exercise etc.
Existential concerns, death and dying, fear of death, fear regarding afterlife etc.
Experience of lack of information, uncertainty about diagnosis/treatment, amount of exercise allowed etc.
Quality of communication between patients and clinicians, satisfaction with care, participation in decision-making etc.
Experience of cognitive dysfunction, memory loss etc.
and free text terms were used to increase inclusiveness and sensitivity
of the searches (see Table S1). Pre-specied selection criteria were applied to all records identied. Reference lists of all full-text articles
were also examined for any studies that might have been overlooked.
Electronic searches began on 20th March 2013 and concluded on 30th
April 2013. The following inclusion and exclusion criteria were applied
to all references identied.
Inclusion criteria
Studies investigating the SCNs/concerns of women with cervical
cancer irrespective of disease stage, treatment protocol or stage in
the illness trajectory.
Studies employing quantitative and/or qualitative methods irrespective of research design.
Reports of primary/secondary research.
Studies published in the English language with readily available abstracts.
Studies conducted with adult (18 years of age) individuals.

Studies published as original articles in peer-reviewed journals between 1990 and 2013.
Exclusion criteria
Studies where SCNs/concerns of women with cervical cancer were
not explicitly discussed, including studies reporting only on total
scale scores.
Studies testing the psychometric properties of SCNs questionnaires.
Studies conducted with patients with mixed cancer diagnoses, except when separate sub-group analyses were reported.
Study selection and data extraction procedures
Two co-authors independently screened the retrieved articles for eligibility, following a two-stage process. The initial screening stage resulted in a shortlist of articles including titles and abstracts. In the
Fig. 1. CONSORT diagram of the article selection process.
481
second stage, the screening process involved retrieval of articles in fulltext, whereby the two co-authors independently assessed all articles for
eligibility against selection criteria until consensus was reached. Data
extraction tables were specically developed for this review, pilottested on three randomly selected studies of the nal sample, and rened accordingly. One author extracted data from the nal sample of
studies.
qualitative methods [24,25,27,28] and one was a mixed-methods

study [38]. Five articles (5/14; 36%) were published from 2008 onwards,
whereas three articles were published before 2000. In their majority,
studies were single-centred (10/12; 83%), and all used convenience
samples of women with cervical cancer. Where reported or relevant,
studies were characterised by moderate to high recruitment rates
(34%91%) [26,28,3135] and moderate attrition rates (32%) [30].
Study methodological quality evaluation
Characteristics of the study samples
Methodological quality evaluation was conducted using the

standardised QualSyst evaluation tool [14], which includes an extensive
manual for quality scoring with denitions and detailed instructions.
QualSyst consists of two separate scoring systems, one quantitative
scale and one qualitative scale. The qualitative scale consists of ten
items with scores from zero to two, yielding a maximum total score of
20. The quantitative scale consists of fourteen items with scores from
zero to two and the possibility to score not applicable. The maximum
total score is 28. Summary scores were reported as percentages (see
Tables S2 and S3). Studies were retained in this review if they were
awarded a summary score of 55%. This score has been suggested as
a relatively liberal threshold, indicating acceptable study quality [14].
Study sample sizes varied widely among the studies from 10 to 968
women (median 33), representing 1414 participants in total. In terms
of their ethnic background, women resided in both developed (USA,
Canada, UK) and developing countries (Indonesia, South Korea, Nigeria,
Thailand). The total sample of participants included mainly White Caucasian, but also Asian, African and Latin American women, thus contributing to the diversity of cancer experiences and needs described. Withinstudy age-means ranged from 33 to 55 years with a grand mean of
50.7 (SD = 5.88) years. Where reported, 74% of women were married
[25,27,30,3436,38]; 49% had at least some high school education [24,
30,3336,38]; and 27% were employed [24,35,36,38] (Table 3).
Cervical cancer diagnosis ranged from b 1 to 6 years prior to study
participation [24,25,28,32,35,36]. Across studies the majority of women
were diagnosed with stage II cervical cancer [3235,37]. Notably, virtually no women with metastatic disease participated in the studies
reviewed. Thirty nine to 100% of women underwent gynaecologic surgery (hysterectomy or trachelectomy), either as a single treatment modality or followed by radiotherapy (RT), chemotherapy (ChT) or
brachytherapy (BrT), and/or combinations thereof. In ve studies,
women were reported to have been treated with RT [28,36], RT/ChT
[27,38] or RT/BrT [34] without any reference to surgical procedures.
Operational denitions of domains of need

To facilitate synthesis and presentation of study ndings, individual
needs where classied into eleven primary domains of need based
on current literature [1522] and clinical expertise. These included
physical, psychosocial/emotional, family-related, social, interpersonal/
intimacy, practical, daily living, spiritual/existential, health system/
information, patientclinician communication, and cognitive needs.
The Supportive Care Framework [23] and current denition of supportive care [6] were also used to support this classication (Table 1).
Synthesis of study ndings
Due to heterogeneity of the studies retrieved, ndings were integrated in a narrative synthesis. Individual needs were classied according to pre-specied domains of need and were synthesised. Prevalence
(%) of studies examining each individual need and domain of need was
also examined using Microsoft Excel spread-sheets.
Findings
Search results
The initial electronic search retrieved 4936 references. After initial
screening, 54 potentially eligible articles were retained and retrieved
in full-text. Of these, 39 were excluded due to a variety of reasons
(Fig. 1). Finally, fteen articles [2438] reporting on 13 unique studies
met eligibility criteria and were considered for further analysis.
Study characteristics and methodological quality
Methodological quality evaluation of the retained studies was performed in parallel with data extraction. Based on the pre-specied
55% threshold, one study (one article) [26] fell below this cut-off point
and was excluded (see Table S4). As a result, 14 articles reporting on
12 studies were included in a narrative synthesis of ndings. Overall,
studies varied in methodological quality with scores ranging from 56%
to 89%, with a median score of 79% (IQR 16%). A median score of 80%
(IQR 20%; range 6085%) was yielded for the qualitative component,
whereas for the quantitative component the median score was 77%
(IQR 14.5%; range 5689%).
All of the included studies were descriptive and observational
(Table 2). Seven studies employed quantitative methods [2937], four
Evidence on SCNs by domain of need

Physical needs
In descending order of prevalence, dealing with pain [24,25,31],
bleeding/spotting [24,31], urinary incontinence [25,28], poor sleep [25,
36] and hair loss [25] were described as being the most prevalent
needs of women in at least two studies, with within-study frequencies
exceeding 50% of the patient sample. Dealing with fatigue [25], bad
dreams [36], bowel dysfunction [28], prolonged/irregular menstruation
[31], and prolonged/excessive vaginal discharge post-sexual intercourse
[24] were additional frequent needs featuring as single-study reports.
Ohaeri et al. [36] found that over 75% of Nigerian women receiving RT
N1 year post-diagnosis described bad odour emerging from their body
that could be attributed to concurrent gynaecologic symptoms.
Psychological/emotional needs
Six studies consistently described women's fears of cervical cancer
recurrence [24,25,27,29,30,32,34]; these concerns appeared to be consistent throughout several studies (within-study occurrence rates
reaching 90%) and only minimally affected by time elapsed since primary diagnosis. Indeed, Carter et al. [29,30] found that women with earlystage disease rated their post-surgery worries about cancer recurrence
persistently high throughout a six-month [29] and two-year [30]
follow-up period, even after controlling for type of surgery (hysterectomy v. trachelectomy). A wide range of less frequent but clinically important additional needs/concerns were also reported in the studies,
including fear of potential metastasis [25], fear of early [25,36] or painful
[25] death, feeling depressed [25,36], feeling tensed up and unable to
relax [25,36], dealing with loss of self-condence/self-esteem [32,34],
worrying about emotional well-being [25], dealing with uncertainty
[27], self-blame [32], feeling old [32] or empty [25], dealing with intrusive thoughts about the illness [25], feeling easily irritated [36], and feeling a need for help to come in terms with illness [32].
482
Table 2
Summaries of the 14 articles (12 studies) reviewed.
Author
(year)
Purpose and context
Ayanti and
Milanti
2012 [24]
Purpose: To explore physical sexual

concerns and their impact on the
intimate partner relationships
experienced by women with cervical
cancer.
Context: Married survivors of cervical
cancer during follow-up care after
completing ChT-RT treatment.
Setting: One hospital.
Country: Indonesia
Ashing-Giwa
et al. 2004
[25]
Burns et al.
2007 [28]
Carter et al.
2007b [29]
Sample size: n = 13
Sampling: Purposive based on saturation principles.
Response rate: NR
Attrition rate: NA
Design: Descriptive, cross-sectional using
phenomenology based on Husserl's philosophy.
Time points: One
Data collection: In-depth face-to-face interviews using
open-ended questions.
Outcomes: Thoughts, feelings and experiences of sexual
and intimacy problems.
Purpose: To describe the cancer
Sample size: n = 51 (African American n = 10; Asian
experiences of survivors of cervical
American n = 10; Caucasian n = 5; Latina n = 26)
cancer or cervical dysplasia.
Sampling: Convenience.
Context: African American, Asian
Response rate: NR
American, Caucasian and Latina women
Attrition rate: NA
with cervical cancer or cervical dysplasia. Design: Descriptive, exploratory, cross-sectional.
Setting: Hospitals and community health Time points: One
clinics.
Data collection: Culture-specic focus group interviews
Country: USA
based on pre-determined themes. Seven focus group
meetings.
Outcomes: Multi-faceted experiences of cervical cancer
or cervical dysplasia.
Purpose: To describe the experience of
Sample size: n = 10
sexuality women living with cervical
Sampling: Convenience
cancer.
Response rate: NR
Context: Middle-aged Quebec women
Attrition rate: NA
treated with RT at least 6 months prior to Design: Descriptive, cross-sectional using
participation.
Time points: One
Country: Canada
Outcomes: Sexuality-related experiences and concerns.
Purpose: To explore women's sexuality
Sample size: n = 13
following treatment for cervical cancer.
Sampling: Purposive, participants in a parallel study
Context: Women treated with radical RT
Response rate: 46%
within the previous 23 y.
Attrition rate: NA
Design: Descriptive, cross-sectional using
Country: UK
Time points: One
Outcomes: Sexuality-related concerns and needs.
Purpose: To examine the reproductive
Sample size: n = 29
and emotional concerns associated with
radical trachelectomy.
Response rate: NR
Context: Women with early-stage cervical Attrition rate: NR
cancer treated with radical
Design: Repeated-measures, descriptive, exploratory.
trachelectomy.
Time points: Three (pre-operatively; 3 and 6 months
Setting: One cancer centre.
post-operatively)
Country: USA
Data collection: Established outcome measures
(FACT-G; CES-D; IES; FSFI) and qualitative items on
fertility issues, treatment choice, adjustment, and
concerns about recurrence.
Outcomes: Changes in mood, distress, quality of life,
sexual functioning, fear of cancer recurrence,
reproductive concerns.
Participant characteristics
Limitations
QualSyst
scorea
Demographic: Age: 40 (3848) y; 5 elementary school, 6 high school, 2

college or above; 80% housewives; 53% husband uncertain income.
Clinical: No metastatic disease; no other cancer diagnosis; 1 y
post-diagnosis.
Limited transferability of ndings to women

with cervical cancer in other cultural contexts,
or to women with different characteristics
(e.g. older or with metastatic disease).
0.85
Demographic: African American Age: 33 (2257) y; 60% single; Number

of children: 1 (03). Asian American Age: 48 (3560) y; 90% married;
Number of children: 1 (03). Caucasian Age: 56 (4573) y; 40%
married; Number of children: 3 (23). Latina Age: 47 (3666) y; 48%
married; Number of children: 5 (110).
Clinical: African American Stage: 100% dysplasia; Time since diagnosis:
b1 (01) y; 60% biopsy only. Asian American Stage: Mainly unknown;
Time since diagnosis: 2 (19) y; 50% surgery. Caucasian Stage: 40% II;
Time since diagnosis: 5 (19) y; 80% surgery and RT. Latina Stage:
Mainly unknown; Time since diagnosis: 2 (010) y; 50% surgery and
ChT.
Possible selective recall bias due to

retrospective research design. Small,
unbalanced and unrepresentative sample size.
0.60
Demographic: Age: 4060 y; 9 married/partnered.

Clinical: 5 last treatment b7 months before, 5 last treatment 2 y before;
10 CTh/RT/BrT
Self-selection bias possible due to social

desirability as a few single women refused to
take part in the study. Findings cannot be
transferred to women with of other origins.
0.80
Demographic: NR
Clinical: Radical RT for cervical cancer within 23 y prior to study
participation.
Limited description of setting and participant

characteristics compromises transferability of
ndings.
0.80
Demographic: Age: 32 (2340) y; 90% White; 90% employed; 86% at least Small, rather homogenous sample of highly
some college education; 62% married/partnered.
educated Caucasian women, unrepresentative
Clinical: 100% early-stage cervical cancer.
of the population.
0.79
Bilodeau and
Bouchard
2011 [27]
Methods
Carter et al.
2008b [31]
Carter et al.
2010b [30]
de Groot
et al. 2005
[33]
Krumm and
Lamberti
1993 [34]
Sample size: n = 30
Response rate: 72%
Attrition rate: NR
Design: Repeated-measures, descriptive, exploratory
Time points: Six (pre-operatively; 3, 6, 12, 18 and
24 months post-operatively)
fertility issues, treatment choice, adjustment, and
concerns about recurrence.
Purpose: To prospectively assess and
Sample size: n = 71 (n = 43 radical trachelectomy;
describe the emotional, sexual and
n = 28 radical hysterectomy). n = 52 at follow-up
quality-of-life concerns of women with
cervical cancer.
Response rate: NR
Context: Women with early-stage cervical Attrition rate: 32%
cancer undergoing radical surgery
Design: Repeated-measures, descriptive, comparative
(radical trachelectomy or radical
Time points: Six (pre-operatively; 3, 6, 12, 18 and
hysterectomy)
24 months post-operatively)
Country: USA
fertility issues, treatment choice, adjustment/concerns
Sample size: n = 83
Purpose: To describe the range and
incidence of psychosocial and sexual
Response rate: 91%
problems/concerns in women with
Attrition rate: NA
cervical cancer.
Context: Women with early-stage cervical Design: Descriptive, exploratory, cross-sectional.
cancer having received different
Time points: One
anticancer treatments.
Data collection: Established outcome measures (RSC,
STAI, BDI), numerical scales, and semi-structured
Country: UK
interviews.
Outcomes: Psychosocial and/or sexual
problems/concerns.
Purpose: To assess the range and intensity Sample size: n = 26
of psychosocial concerns experienced by Sampling: Convenience
women with cervical cancer and their
Response rate: 43%
male partners.
Attrition rate: NA
Context: Couples in stable, heterosexual
Design: Descriptive, comparative, cross-sectional.
relationship, where the woman had
Time points: One
invasive cervical cancer, up to 2 y
Data collection: CCCQ and additional established
post-treatment.
outcome measures (CES-D, POMS-F, IIRS, DAS, SLEC).
Outcomes: Cervical cancer concerns; psychosocial
Country: Canada
functioning; effects of role, age, disease stage, time
after treatment, marital dissatisfaction.
Purpose: To explore changes in sexual
Sample size: n = 21
behaviour and correlates of sexual
dysfunction in women with cervical
Response rate: 87.5%
cancer.
Attrition rate: NA
Context: Women with early-stage (I-II)
Design: Descriptive, exploratory, correlational,
cervical cancer between 6 months and
cross-sectional
5 y post-RT.
Time points: One
Data collection: Retrospective and prospective
Country: USA
interview accounts and completion of a sexual
behaviour questionnaire.
Outcomes: Changes in sexual behaviour; correlates of
sexual dysfunction.
Demographic: Age: 31 (2045) y; 50% married/partnered; 93% White.

Clinical: 100% Stage I disease; 33% some vaginal scarring, encroachment
and/or stenosis; 40% underwent a neo-cervical dilation.
Small, unbalanced and unrepresentative sample

size. Incomplete study data.
0.86
Demographic: Age: 34.5 5.6 y; 58% married/partnered; 68% childless;

66% at least some college education; 90% White.
Clinical: 61% Radical trachelectomy; 73% desire to preserve ovaries; 77%
fertility was a factor in decision-making on type of surgery.

size. Attrition rates as a potential source of bias.
Unclear comparisons between pre-operative
and post-operative sample after exclusion of 15
women who received CTh and/or RT.
0.82
Demographic: Age: 45 12 (2577) y.

Clinical: 100% Stage 1b disease; 46% hysterectomy, 45% RT, 9%
hysterectomy plus RT; Time since diagnosis: 97 38 (17171) weeks.
Insufcient demographic data to characterise

the sample. Unrepresentativeness of sample in
terms of clinical characteristics.
0.72
Demographic: (patients) Age: 44.4 11.1 y; 42% Secondary school

education, 46% at least some college education.
Clinical: 65% Stage I-II, 35% stage III-IV; 62% Surgery, 65% RT, 58% CTh;
Time post-treatment: 12.6 12.3 y; 62% Recent treatment
(12 months).

size, especially due to low response rate. No
generalizability in other ethnic/racial groups.
Cross-sectional nature of studies precludes
evidence on evolution of concerns.
0.86
Demographic: Age: median 54.4 y; 86% married; N50% some high school
education.
Clinical: 95% Stage II disease; 100% RT and BrT; Time since treatment:
17.8 (635) months.
Small and unrepresentative sample size. No

analysis of personal qualitative interviews was
mentioned. Retrospective data might have
introduced recall bias.
0.56
Cull et al.
1993 [32]
Purpose: To investigate the incidence of

cervical stenosis and related emotional
and sexual adjustment concerns in
women with cervical cancer.
Context: Women with early-stage cervical
cancer treated with radical
trachelectomy.
Country: USA
(continued on next page)

483
484
Table 2 (continued)
Author
(year)
Purpose and context
Noh et al.
2009 [35]
Purpose: To explore the cancer

information needs, utilisation and source
preferences of women with cervical
cancer.
Context: Regardless of disease stage,
diagnosed with cervical cancer between
1983 and 2004.
Setting: Six hospitals.
Country: South Korea
Methods
Limitations
QualSyst
scorea
Demographic: Age: 55 10.8 (2587) y; 76% partnered; 48% at least

high school education; 27% employed.
Clinical: Disease stage: 96% I-II; 86% in complete remission; 67% good
global health status; 79% past surgery; 26% past RT; 29% past ChT; Time
since diagnosis: 6 y (59% N5 y).

retrospective research design. Selection bias
possible. HCPs were not included as preferred
sources for information.
0.70
Demographic: (women with cervical cancer) Age: 51.2 12.4 y; 74%

married; 69% unemployed; 80% at best some primary school education.
Clinical: 100% RT.
Small sample size, unrepresentative of the

Nigerian population.
0.75
Demographic: Age: 45.3 7.8 y; 89% Lower socio-economic status.

Clinical: Disease stage: 15% IA, 77% IB, 2% IIA, 6% IIB; Treatment: 85%
Surgery alone, 8% Surgery and adjuvant ChT, 7% Neo-adjuvant ChT and
surgery; 17% HRT; Time since surgery: median 20.3 (6.235.5) months.
0.90
Sample not entirely representative of the
population (e.g. women with disease stage III or
IV, or sexually inactive women were not
included).
Demographic: Age: 3040 y n = 2, 4155 y n = 9, 5665 y n = 3;

n = 11 married/partnered; n = 8 high school education or less; n = 4
employed.
Clinical: Time since treatment completion 19.6 16.5 (059) months.
Combination EBRT, internal brachytherapy and chemotherapy.

retrospective research design. Small and
non-representative sample precludes
generalizability.
0.65
(quant)
0.65
(qual)
Abbreviations: EBRT External beam radiation therapy; y years; ChT Chemotherapy; RT Radiotherapy; HRT Hormonal replacement therapy; HCP(s) Healthcare professional(s); NR Not reported; NA Not applicable; FACT-G Functional
Assessment Cancer Therapy-General; CES-D Center for Epidemiological Studies Depression Scale; IES Impact of Event Scale; FSFI Female Sexual Function Index; BrT Brachytherapy; RSC Rotterdam Symptom Checklist; STAI State-Trait
Anxiety Inventory; BDI Beck Depression Inventory; FBS Frankfurter Bendlichkeitsskala; GHQ-12 General Health Questionnaire; CCCQ Cervical Cancer Concerns Questionnaire; POMS-F Prole of Mood States-Fatigue; IIRS Illness Intrusiveness Rating Scale; DAS Dyadic Adjustment Scale; SLEC Stressful Life Events Checklist.
a
The qualitative scale consists of ten items with scores from zero to two, yielding a maximum total score of 20. A summary score is calculated for each study by summing obtained scores across the ten items and dividing them by the total possible
score of 20. The quantitative scale consists of fourteen items with scores from zero to two and the possibility to score not applicable (not applicable items were excluded from the calculation of the summary score). The maximum total score is 28.
The summary score was calculated by summing up the total obtained scores across the relevant items and dividing that by the total possible score (i.e. 28 (number of not applicable 2)).
b
Reports are based on the same study.
Sample size: n = 968

Sampling: Convenience, postal survey.
Response rate: 34%
Attrition rate: NA
Design: Exploratory, descriptive, cross-sectional survey
combining prospective and retrospective data.
Time points: One
Data collection: Author-developed survey
questionnaire.
Outcomes: Need for information, satisfaction with
information received, information seeking behaviour,
ways of use of information, preferred sources and
formats, type of information needed.
Ohaeri et al. Purpose: To explore the psychosocial
Sample size: n = 39 (women with cervical cancer);
1998 [36]
concerns and their correlates in women
n = 76 (women with breast cancer)
with cervical or breast cancer.
Context: Women diagnosed with cervical Response rate: NR
or breast cancer at least 1 y prior to study Attrition rate: NA
participation, and treated with RT.
Design: Descriptive, exploratory, comparative,
cross-sectional
Country: Nigeria
Time points: One
Data collection: Established measures of psychosocial
variables (FBS, GHQ-12).
Outcomes: Psychosocial problems and concerns;
between-group differences; correlates of concerns.
Sample size: n = 105
Tangjitgamol Purpose: To assess sexual dysfunction in
Sampling: Convenience, consecutive.
et al. 2007 sexually active women with early-stage
cervical cancer treated with radical
Response rate: NR
[37]
hysterectomy.
Attrition rate: NA
Context: Six to 36 months post-radical
Design: Descriptive, correlational, cross-sectional
hysterectomy with no recurrence.
survey.
Setting: Three hospitals.
Time points: One.
Country: Thailand
Data collection: Author-developed questionnaire.
Outcomes: Sexual functioning and concerns about
sexual health.
Toubassi
Purpose: To retrospectively assess the
Sample size: n = 14
et al. 2006 needs of women affected by cervical
Sampling: Convenience.
[38]
cancer at the time of their preparation for Response rate: NR
treatment.
Attrition rate: NA
Context: Within 5 years post-completion Design: Mixed-methods, cross-sectional. Face-to-face
of combined chemo-radiation for cervical and telephone interviews including quantitative and
cancer.
qualitative questions based on a retrospective needs
assessment.
Country: Canada
Time points: One.
Data collection: Information needs assessment
questionnaire.
Outcomes: Information needs regarding treatment,
practical matters of everyday living, social and
sexuality issues.
Participant characteristics
Family-related needs
Only one study focused on the family-related needs of a mixed sample of Caucasian, African American, Asian American and Latino women
diagnosed with cervical cancer at different time points [25]. These included worries about daughters developing cancer/inheriting the disease; worries about the impact cancer has on family/emotional
impact; concerns about own inability to care for children and full family responsibilities; and concerns about their family living without a
caregiver especially as a result of their premature death. Due possibly
to such concerns and potential worries about the beliefs or reactions
of the extended family, women described their need to keep things
such as the news of their diagnosis from the family [25]. In some
cases, such practices were employed to avoid burdening the family.
Social needs
Women perceived living with cervical cancer as a highly stressful experience, regardless of ethnic background or time since diagnosis [25,
32,36]. Often, women had to deal with feelings of isolation, shame or
embarrassment [25], especially those also dealing with concerns about
unpleasant body odour being noticeable by other people [36] or about
compromised social desirability [32]. Yet, relationships with others
seemed to be unaffected by time since treatment completion [33]. Especially in minority patient groups such as Latino or African Americans,
women were particularly concerned about neighbours or friends' perceptions of them, whilst others worried about thoughts, judgments or
insensitivity of other people towards them [25].
Interpersonal needs/intimacy concerns
Dealing with lack of sexual desire due to dyspareunia, bleeding, foulsmelling discharge, bladder and/or bowel dysfunction, or loss of libido
was the most common individual need expressed in the studies
reviewed [24,25,27,28,32]. A host of concerns and fears contributed to
this compromised sexual drive, including fear of infecting partner
through sexual intercourse [24,34], fear about injuring/aggravating the
affected area during sex [25], fear of resuming sexual activity due to
negative thoughts and emotions about sexuality [31,32], and anxiety
about sexual intercourse after treatment due to fear of cancer recurrence [28,32]. Even if interested in having sex, women often felt unable
to engage in intercourse [24,27], whilst others worried about not being
able to enjoy sex [36]; this was despite sexuality concerns remaining
unaffected by time since treatment completion [33]. In other cases however, mainly associated with cultural pressures and expectations,
women felt forced to full the partner's sexual desires [24,25,37]. Nevertheless, an early study reported that only 16.4% (10/61) of women
expressed a need to have sexual counselling [32]. Tension, confrontations, compromised intimacy and an adversely affected relationship
with the partner were frequently the result of the afore-mentioned issues [24,25,28,32]. Concerns about relationships with partners seemed
to statistically signicantly increase the closer the women were to completion of treatment [33]. In two studies, women found themselves with
partners' negative reactions due to abstinence from sex [24,32]. Sexuality
problems seemed to further adversely impact on marriage [24,25], generating fears of rejection from partner [24,34] or abandonment for another
woman [24,25]. In this situation, some women found difculty to convey
their actual needs or desires to partners [27,32]. Recently, Bilodeau and
Bouchard [27] reported that women with cervical cancer sought sexual
satisfaction in their intimate relationship with their partner, regardless
of whether this involved actual sexual intercourse or not. Additional concerns about appearance (e.g. hair loss or weight gain), self-image, attractiveness, desirability and/or femininity were expressed during and/or
following treatment in seven of the studies reviewed [25,28,32,34,36,
37], whilst Ashing-Giwa et al. [25] also described a hysterectomyrelated stigma on womanhood as well as single women's difculty in dating. Finally, despite only rarely being assessed in the studies reviewed,
concerns about loss of fertility [25,29,30] and/or ability to maintain a
485
pregnancy [29] were prominent, with some women feeling a pressing

need of having a baby before it was too late [29].
Practical needs
Practical needs were examined from the perspectives of women
with different ethnic/racial backgrounds [25,36], and can be classied
as general and situational practical needs. General practical needs included long wait for appointments [25], nancial constraints [25], concerns about being unable to continue working [25,36], fear of becoming
redundant [25] and being unable to provide for their family [25].
Situation-specic practical needs related to the circumstances of
women belonging to minority ethnic/cultural groups, and included
women having to deal with language barriers [25], fear of being reported to immigration ofcials [25], or feeling ashamed in having to ask for
nancial assistance despite current nancial difculties [25].
Daily living needs
Only two studies provided insight into the daily living needs of
women. In their day-to-day experience of cervical cancer, women
seemed to strive to maintain an equilibrium between fear of becoming
incapacitated [25,36] or dependent on others [25], and an urge to act towards preventing recurrence and staying healthy overall [25].
Spiritual/existential needs
Fear of the unknown was the only spiritual/existential concern that
was only supercially explored in one of the studies reviewed [25].
Health system/information needs
Six studies reported a perceived lack of information from physicians
[25,37], especially about the short- [28,35,38] or long-term effects [28,
38] of treatment. Women would value additional information about
the cause of cervical cancer and the potential for recurrence [32,33,35],
information about available treatment options or medical tests [25,35,
38], or sexuality-related information [28,34,37,38]. Interestingly, information regarding prognosis was, on average, the greatest need for
short-term survivors (b 12 months post-treatment) [33]. In an early
study [32], half of the sample (41/83; 49%) expressed a need for counselling, which was further supported in more recent studies where information about cancer support groups [25,38], access to a psychologist or
social worker [38], or access to other patients' experiences [38] would
be of interest to women. The need for more information on the more
practical matters of daily living was also expressed. Indeed, four studies
provided evidence on women's need for more information on nancial,
home or transportation assistance [35,38], but mainly revealed a need
for health practice-related recommendations [25], possibly including information about ways to self-care [35], information on the use of complementary/alternative medicine therapies [35], and information on
appropriate nutrition [38]. However, two studies specically reported
on the logistics of the provision of information. Women cautioned that
too much information might result in despair [26]; therefore, appropriate timing, environment and quality of the information given were
needs to be taken into consideration [28].
Patientclinician communication needs
Effective and sensitive communication with clinicians is a core component of cancer care. Nevertheless, lack of support [25], insufcient
time with doctors [25], and dissatisfaction with the explanation of test
results or the impact treatment may have on sexuality [25,34] were reported in the studies reviewed. Women also identied a lack of continuity in their care as well lack of sensitivity during physical examinations
that adversely affected overall experience [25]. Conversely, ensuring the
presence of a health professional during treatment [27] was suggested
as a vital arrangement to improve satisfaction with care for women
with cervical cancer. Interestingly, de Groot et al. [33] found that
women with cervical cancer who completed treatment within the previous 12 months had greater concerns related to communication with
Most and least frequently reported/addressed needs
Practical
Interpersonal/intimacy
Social
Familyrelated
Domain of need
Cervical cancer remains a primary illness concern for women of reproductive age around the world. In developed countries, early detection of anomalies in the tissue has been linked to prevention or
effective treatment of cervical cancer; in the developing world however,
women still present late, at incurable stages. Irrespective of context,
women with cervical cancer may present with a multitude of needs
and concerns regarding their own life and the lives of their signicant
others. Our systematic review provides insight into the range and complexity of women's SCNs, whilst at the same time highlights the requirement for more work in this under-researched area. Indeed, twelve
studies contributed ndings that resulted in differing degrees of diversity and heterogeneity in the nal synthesis of evidence.
Diversity in study ndings was reected on the range of the SCNs
reported or investigated, as well as the demographic and clinical characteristics of the study samples that allowed for the experiences of women
with cervical cancer from different backgrounds and in different
circumstances to be identied. In their majority, studies focussed primarily on the interpersonal/intimacy, health system/information, psychological/emotional or physical needs of women with cervical cancer,
interacting domains which at a rst glance seem to be related with
the phases of initial diagnosis and active treatment.
Study
Summary and critique of evidence
Table 4
Matrix of domains of need addressed within and across the 12 studies (14 articles) reviewed.
Discussion
Daily
living
In descending order of frequency, interpersonal/intimacy (10/12;

83.3%), health system/information (8/12; 66.7%), psychological/emotional (7/12; 58.3%) and physical needs (6/12; 50%) were the domains
most frequently addressed in the studies reviewed. In comparison,
spiritual/existential (1/12; 8.3%), family-related (2/12; 16.7%), practical
(2/12; 16.7%), and daily living needs (2/12; 16.7%) were only rarely explored in this sample of studies (Table 4).
Across studies, the most frequently cited individual needs (4 studies) were dealing with fear of cancer recurrence (6/12; 50%) [24,25,27,
29,30,32,34], concerns about appearance/body image (6/12; 50%) [25,
28,32,34,36,37], lack of sexual desire (5/12; 42%) [24,25,27,28,32], requiring more sexuality-related information (4/12; 33.3%) [28,34,37,
38], dealing with pain (3/12; 25%) [24,25,31], and dealing with difculties in relationship with partner (3/12; 25%) [25,28,32].
8
Notes: () Domain of need was explored; () Domain of need was not explored.
Spiritual/existential
the treatment team than those whose treatment was completed 12

months earlier.
Abbreviations: X Grand mean; SD Standard deviation.
%
74
49
27
15
81
3
b1
n
871/1174
569/1152
280/1034
180/1203
974/1203
39/1203
b10/1203
10
Max %
90
88
31
100
96
35
4
100
Min %
40
20
20
28
8
4
3
39
50.7 (5.9)
968
968
51
55
6
10
21
10
33
b1
33
71
13
Ayanti and Milanti 2012 [24]

Ashing-Giwa et al. 2004 [25]
Bilodeau and Bouchard 2011 [27]
Burns et al. 2007 [28]
Carter et al. 2007, 2008, 2010 [2931]
Cull et al. 1993 [32]
de Groot et al. 2005 [33]
Krumm and Lamberti 1993 [34]
h et al. 2009 [35]
Ohaeri et al. 1998 [36]
Tangjitgamol et al. 2007 [37]
Toubassi et al. 2006 [38]
Across studies n of domains explored
Max
Cognitive
Min
Patient-clinician
communication
Median
Health
system/Information
Married
At least high school education
Employed
Disease stage I
Disease stage II
Disease stage III
Disease stage IV
Gynaecologic surgery
Within studies
X (SD)
Psychological/emotional
Sample size (all studies)

Sample size (quantitative methods)
Sample size (qualitative methods)
Age (years)
Time since diagnosis (years)
Across studies
Within-study n of
domains explored
Table 3
Across- and within-study demographic and clinical characteristics of the study samples in
the 12 studies (14 articles) reviewed.
3
10
3
3
3
5
6
4
1
6
2
1
46
Physical
486
Women with cervical cancer consistently described their need to deal

with lack of sexual desire, difculties in their relationship with their
partner, concerns about appearance/body image, and a potential loss of
fertility. Such needs were often experienced concurrently and were interrelated. In women with gynaecological cancers, sexual morbidity has
been well documented as a signicant and persisting issue [3941]
that can adversely affect overall quality of life [42,43] and psychological
adjustment [43]. Our ndings suggest that alterations in bodily functions
are just one dimension of the multi-faceted needs of women with cervical cancer. The impact upon the women's psychological and social wellbeing was notable too, possibly associated with a compromised selfesteem and poor body image [44,45]. Over time, changes in social roles
and usual partner interactions leading to unfullling intimate and social
relationships were also likely to develop. Previous research conducted
during and beyond gynaecological cancer suggests that changes in sexuality occur at both an individualistic intra-psychic and an inter-subjective
level that go beyond mere physical manifestations [46]. Moreover, in the
cervical cancer population of younger individuals, fertility concerns can
be a particularly relevant issue [45], especially for those women experiencing abrupt post-radiotherapy menopausal symptoms or postsurgery infertility. Standard treatments of early-stage cervical cancer
are radical hysterectomy and pelvic radiotherapy that are almost incompatible with normal fertility [47]. Radical trachelectomy has gained increasing recognition as an alternative, fertility-preserving option for
young women with cervical cancer [48]; as such, it can be an important
factor to alleviate worries and facilitate decision-making for those
women interested in future childbearing.
The psychological impact of living with cervical cancer primarily
manifests itself in a persistent need to deal with fear of cancer recurrence [45]. High levels of psychological distress have been reported in
women with cervical cancer [49] and other gynaecological cancers
[50] that may persist even at 5 years post-diagnosis [50]. Managing
fear of cancer recurrence remains the single strongest need in the
gynaecologic cancer population [3,50,51], yet still the most frequently
unaddressed one [3,52]. Fear of cancer recurrence has been linked to
decits in quality of life and emotional well-being [52], whilst it has
been shown to persist over an extensive period of time post-diagnosis
[53]. However, only a few interventions targeting fear of recurrence
have been tested, the effectiveness of which is yet to be established
[54]. It may be argued that in order to enhance any psychological interventions for women with cervical cancer, attention to context is paramount, especially given the impact of cultural and/or socio-economic
factors on general attitudes towards cervical cancer and the experience
of this disease [55,56]. For instance, among low-income Latino women
with cervical cancer, 76% reported symptoms similar to diagnosable depression [57]. Socio-economic and racial factors can thus act as moderators of psychological outcomes and needs in this population. In
addition to social reclusion, stigma and embarrassment perceived and/
or experienced by women with cervical cancer especially those residing in or coming from developing countries with strong cultural inuences [49] can only heighten their psychological distress.
Similar to other cancer patient populations [19,22,58], the need of
women with cervical cancer for more tailored information on an array
of illness- and treatment-related issues became apparent in our ndings. Yet, the single most prominent need related to obtaining adequate
information was on sexuality and intimacy issues. This is hardly a surprising nding given the extent of relationship problems in this population and also considering women's concurrent physical needs that
mainly stemmed from the physical manifestations of the cervical cancer
itself that involves the urogenital system [12,46,59,60]. Given that sexual morbidity has been linked to poorer psychological adjustment in
gynaecologic cancer survivors [43], the development of informationrelated interventions focusing on the sexual manifestations of the disease should be regarded as a priority for future research and care. Furthermore, a need for more quality information on cervical cancer
treatment and prognosis is also apparent in this population too [45].
487
Linked to the provision of information is patientclinician communication, which was identied as an area for future action and improvement
[61]. As with previous research [62], perceived lack of support and/or continuity of care can dramatically impact on women's experience, especially
at the time of diagnosis. Current evidence suggests that information giving is not just about quantity [63,64]; sensitively conveying the information requested, investing adequate time to communicate with women,
providing relevant information and assessing the impact of any new
information on those receiving it are paramount components of the patientclinician relationship.
Whilst psychological and information needs were prominent in the
studies reviewed, spiritual, family-related, practical and daily living
needs received little focus and were relatively unexplored. In light of
these domains of need being recognised in denitions of supportive
care and related frameworks [6,23], such ndings are to an extent surprising. With empirical evidence highlighting the impact of a cancer diagnosis on existential and daily living/practical issues [65,66], further
research is required to explore these domains of need in greater depth
in this area.
Heterogeneity in our sample of studies revealed a number of gaps in
current methodology. First, ndings were heavily skewed towards
women diagnosed with non-metastatic cervical cancer, specically
those with stage II disease. As a result, the needs of women with recurrent or metastatic cervical cancer remain unexplored. Existing empirical
evidence suggests that advanced cancer can be predictive of more physical, psychological, information and practical SCNs and increased psychological distress [67,68]. Widening the scope of research to include
women at all stages of the cervical cancer trajectory is thus essential
to grasp the spectrum of SCNs experienced in its entirety. Second, despite the range of potential correlates, predictors of unmet need in this
population remain fairly under-researched. In the current set of studies,
only the effects of disease stage, time since diagnosis and type of
gynaecologic surgery were investigated, but ndings are inconclusive.
For instance, dealing with concerns about intimate relationships and requiring more information regarding prognosis and better communication with the clinical team were needs experienced signicantly more
frequently among women closer to treatment completion. On the contrary, needs pertinent to worries about cancer recurrence, dysfunctional
social relationships and the effects of cancer on self-image appeared
equally pressing regardless of time diagnosis or treatment completion.
Age, family status, employment status ethnic background, migration
status, phase of treatment, and perceived access to information are additional factors that may affect the degree of unmet need in women
with cervical cancer. Third, the collection of data in the quantitative
studies was less than optimal. Indeed, not only were some studies
based on non-validated author-developed scales, but also where
multi-dimensional questionnaires were used, their psychometric robustness is questionable. Closely related, the retrospective nature of
questions rendered unclear whether the needs expressed related to a
specic point in the past or if they continued to be unmet at the time
of data collection. With current research supporting the use of patientreported outcome measures in routine clinical practice [69], inclusion
of appropriate and adequate measures of need is essential. Currently,
only one needs-specic questionnaire currently exists for women with
cervical cancer [33]. Yet, even this questionnaire still requires extensive
validation before it can be reliably used as an outcome measure.
Review strengths and limitations
A strict systematic approach was followed to identify and select all
studies that met our eligibility criteria, assess their methodological quality, and synthesise evidence in accordance to PRISMA guidelines [13]. To
this end, we conducted our synthesis of ndings in an unbiased manner
to promote reproducibility, whilst we endeavoured to enrich our
dataset by contacting study authors for additional information or clarication were study ndings were missing or unclear. Our ndings are
488
constrained due to methodological limitations of the studies reviewed;

however, a few limitations of our review methodology must be acknowledged. Whilst we purposely used an inclusive search strategy,
this was not exhaustive but limited to the most common databases.
Due to time constraints, we also limited our search to peer-reviewed articles and reports, thus excluding grey literature. We have further limited our search to the English language only. Given that nowadays
cervical cancer is primarily diagnosed in developing and potentially
non-English speaking countries we cannot rule out the possibility that
a number of studies published in languages other than English might
have been missed. However, it is anticipated that this number is only
minimal.
Implications
Implications for research
There are undeniable decits in the quality of research thus far conducted on the SCNs of women with cervical cancer, but also opportunities for a more comprehensive and systematic approach. Rigorously
designed, adequately powered and fairly representative quantitative
studies utilising validated patient-reported outcome measures will be
required to fully describe the range of cervical cancer-related needs of
women at different phases of the illness and/or treatment trajectory
and with different backgrounds and circumstances, and explore sociodemographic, clinical and behavioural factors that may place women
with cervical cancer at risk for greater unmet needs and compromised
psychosocial adjustment. It is a fact that, despite rigorous screening
and prevention programmes, cervical cancer is disproportionately
high in developing countries, even in rural and/or underserved areas
of developed countries too. Psychosocial researchers in these countries
are urged to contribute to the existing body of knowledge in an attempt
to improve the care provided. Relying on robust research designs and
protocols [16], intervention studies could also explore the feasibility
and/or effectiveness of patient feedback through the routine use of
patient-reported outcome measures to increase the undertaking of
needs assessment and subsequent interventions. Moreover, coproductive models of care, including peer and professional support
groups, could well serve to direct patients to appropriate services [45].
Relatedly, dyadic quantitative and qualitative studies and intervention
programmes could enhance our understanding of relationship dynamics and manifestation of interrelated needs when cervical cancer is diagnosed, and provide a point for actual support and rehabilitation that
goes beyond the individual and is extended to the partner and the
family. Spanning over extended periods of time, such research could effectively reveal variations in unmet need and time points where immediate and intensive clinician support is required.
vigilant of potential needs throughout the cancer journey, systematically discuss with women about any problematic areas, but importantly reinforce that they are always open to discuss needs and concerns, and
offer reliable and understandable advice and solutions if and when
these needs arise. For instance, facilitating the sharing of information
and support with peers or other women in similar circumstances may
be an extremely benecial process, whilst clarifying misconceptions
about cervical cancer with the woman's family and social network
could prevent insensitivity, stigma and social isolation [45,49,52,70].
Conclusions
The current systematic review reveals a host of SCNs for women
with cervical cancer. A predominant focus on sexuality, information
seeking, psychological and physical needs was noted. Cervical cancer
seems to heighten women's concerns about cancer recurrence, impact
on the physical and psychosocial aspects of sexuality, and be accompanied by physical and psychological sequelae that collectively raise the
requirement for more, tailored and sensitively provided information.
Considerably less attention was given to all other domains of need.
Yet, concerns and worries about the family's well-being and women's
own social desirability, a pledge for more effective communication
with the clinical team, and numerous general and situational practical
needs (involving work productivity, nances, self-care ability, or barriers related to immigration status) became readily apparent. What
the priority of these needs is and the extent to which such needs are experienced and impact on women's well-being are questions to lead future research in this context. Importantly, within-study limitations
precludes denitive conclusions as to how these needs evolve over
time as women move from diagnosis to treatment and subsequently
to survivorship. In conjunction with mapping the trajectories of needs,
identifying women at risk for greater unmet needs and needs-related
distress can signicantly improve our ability to offer more timely and
tailored care. Current evidence is scarce, but urgently needed. Whether
age, race/ethnicity, disease stage, or treatment plan moderate the manifestation of needs related to living with and beyond cervical cancer,
only remains to be answered in future dedicated studies. Meanwhile,
clinicians are urged to use ndings of this review in their everyday consultations with women with cervical cancer to identify their priorities in
relation to needs and concerns to facilitate safe, effective and personcentred care.
Supplementary data to this article can be found online at http://dx.
doi.org/10.1016/j.ygyno.2014.10.030.
Conict of interest statement
The authors declare that there are no conicts of interest in relation with this work.
Implications for clinical practice
Funding source
Investing time to sensitively inquire about and assess any SCNs is a

key message to all health professionals involved in the care of women
with cervical cancer [61]. Engaging in an active process of evaluating
and re-shaping clinical interactions based on women's priorities and
needs is paramount. Regardless of disease stage, women will struggle
to both adapt to their illness and accept their new life situation [49].
Whether they succeed in this endeavour may depend on the extent to
which their cancer-related needs are met. Current evidence suggests
that women with cervical cancer are particularly concerned about issues relating to sexuality/intimacy, availability and quality of information, and the psychological and physical sequelae of cancer and its
treatment. Such concerns may generate needs that may be unique
in their frequency and/or intensity, possibly moderated by this
population's younger age and social circumstances, as well as the location of this specic type of cancer and the associated fertility implications and overall prognosis. Oncology professionals will need to be
The present work was supported through a research grant awarded

by the Cancer Division of NHS Lanarkshire. The views presented in this
article are those of the authors, not of the funding body.
Acknowledgments
We thank Fran O'Brien (NHS Lanarkshire) for her comments on an
earlier version of this article.
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A Systematic Review of The Supportive Care Needs of Women Living With

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A Systematic Review of The Supportive Care Needs of Women Living With

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Gynecologic Oncology 136 (2015) 478490

Contents lists available at ScienceDirect

A systematic review of the supportive care needs of women living with

School of Health Sciences, University of Surrey, Guildford, Surrey, UK

Available online 20 November 2014

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

seems to be of particular importance for women with cervical cancer

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

Studies conducted with adult (18 years of age) individuals.

Fig. 1. CONSORT diagram of the article selection process.

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

qualitative methods [24,25,27,28] and one was a mixed-methods

Study methodological quality evaluation

Characteristics of the study samples

Methodological quality evaluation was conducted using the

Operational denitions of domains of need

Evidence on SCNs by domain of need

Purpose and context

Purpose: To explore physical sexual

Demographic: Age: 40 (3848) y; 5 elementary school, 6 high school, 2

Limited transferability of ndings to women

Demographic: African American Age: 33 (2257) y; 60% single; Number

Possible selective recall bias due to

Demographic: Age: 4060 y; 9 married/partnered.

Self-selection bias possible due to social

Limited description of setting and participant

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

Demographic: Age: 31 (2045) y; 50% married/partnered; 93% White.

Small, unbalanced and unrepresentative sample

Demographic: Age: 34.5 5.6 y; 58% married/partnered; 68% childless;

Small, unbalanced and unrepresentative sample

Demographic: Age: 45 12 (2577) y.

Insufcient demographic data to characterise

Demographic: (patients) Age: 44.4 11.1 y; 42% Secondary school

Small, unbalanced and unrepresentative sample

Small and unrepresentative sample size. No

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

Purpose: To investigate the incidence of

(continued on next page)

Purpose and context

Purpose: To explore the cancer

Demographic: Age: 55 10.8 (2587) y; 76% partnered; 48% at least

Possible selective recall bias due to

Demographic: (women with cervical cancer) Age: 51.2 12.4 y; 74%

Small sample size, unrepresentative of the

Demographic: Age: 45.3 7.8 y; 89% Lower socio-economic status.

Demographic: Age: 3040 y n = 2, 4155 y n = 9, 5665 y n = 3;

Possible selective recall bias due to

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

Sample size: n = 968

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

pregnancy [29] were prominent, with some women feeling a pressing

Most and least frequently reported/addressed needs

Summary and critique of evidence

In descending order of frequency, interpersonal/intimacy (10/12;

the treatment team than those whose treatment was completed 12

Abbreviations: X Grand mean; SD Standard deviation.

Ayanti and Milanti 2012 [24]

Sample size (all studies)

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490

Women with cervical cancer consistently described their need to deal

R. Maguire et al. / Gynecologic Oncology 136 (2015) 478490