Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
Gynecologic Oncology
journal homepage: www.elsevier.com/locate/ygyno
Review
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
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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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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.
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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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.
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.
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.
482
Table 2
Summaries of the 14 articles (12 studies) reviewed.
Author
(year)
Ayanti and
Milanti
2012 [24]
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.
phenomenology based on Husserl's philosophy.
Setting: One hospital.
Time points: One
Data collection: In-depth face-to-face interviews using
Country: Canada
open-ended questions.
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
Setting: One hospital.
Design: Descriptive, cross-sectional using
Country: UK
phenomenology based on Husserl's philosophy.
Time points: One
Data collection: In-depth face-to-face interviews using
open-ended questions.
Outcomes: Sexuality-related concerns and needs.
Purpose: To examine the reproductive
Sample size: n = 29
and emotional concerns associated with
Sampling: Convenience
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
0.85
0.60
0.80
Demographic: NR
Clinical: Radical RT for cervical cancer within 23 y prior to study
participation.
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
Sampling: Convenience
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)
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.
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
Sampling: Convenience
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)
Setting: One cancer centre.
Data collection: Established outcome measures
Country: USA
(FACT-G; CES-D; IES; FSFI) and qualitative items on
fertility issues, treatment choice, adjustment/concerns
Outcomes: Changes in mood, distress, quality of life,
sexual functioning, fear of cancer recurrence,
reproductive concerns.
Sample size: n = 83
Purpose: To describe the range and
incidence of psychosocial and sexual
Sampling: Convenience
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,
Setting: One hospital.
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).
Setting: One hospital.
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
Sampling: Convenience
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
Setting: One hospital.
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.
0.86
0.82
0.72
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.
0.56
Cull et al.
1993 [32]
484
Table 2 (continued)
Author
(year)
Noh et al.
2009 [35]
Methods
Limitations
QualSyst
scorea
0.70
0.75
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).
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.
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
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
Table 4
Matrix of domains of need addressed within and across the 12 studies (14 articles) reviewed.
Discussion
Daily
living
8
Notes: () Domain of need was explored; () Domain of need was not explored.
Spiritual/existential
%
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
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
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
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
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.
Funding source
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