Keywords
survivors - gynecological cancer - sexuality - supportive care needs
Palavras-chave
sobreviventes - câncer ginecológico - sexualidade - suporte de necessidades de cuidados
Introduction
Early detection and treatment of gynecologic cancer at an initial stage allow high
chances of cure and improved survival and, consequently, an increase in the number
of survivors.[1]
[2]
[3]
[4]
[5]
[6]
[7]
[8]
All forms of treatment for gynecologic neoplasia (pelvic surgery, radiation, and drug
therapy) have the potential to impair physiological and psychological functions, and
also generally affect the self-esteem, body image, femininity, and intimate relationships
of women; sexual dysfunction is the most frequently mentioned in the literature.[9]
[10]
[11]
[12]
Sexual health is an essential aspect of quality of life. As a result of the aggressive
treatment received, > 40% of gynecologic cancer patients reported chronic and distressing
sexual difficulties, even after 12 months of treatment.[13]
[14]
[15] Sexual dysfunction, in addition to being extremely distressing, negatively affects
the relationship with their spouses, which can result in emotional estrangement.[16]
[17]
[18]
[19]
Studies indicate that 74% of the surviving participants felt that communication with
oncology professionals about sexual issues was important, but few had received this
information.[20]
[21] Many women reported having no discussion about sexuality with their physicians during
and after treatment, which represents a troubling gap in the provision of supportive
care for health needs.[22]
[23]
Recognizing that post-treatment gynecologic cancer causes various negative impacts
on the health of the female sexual organs, it becomes important to seek to understand
the subjective phenomena about the experience of sexuality after treatment.[24]
[25] Recently, topics such as “cancer survivors” and “supporting care needs” have been
increasingly published, and many researchers are studying these concepts, addressing
dimensions such as “sexuality”, “gynecologic cancer”, and “health dysfunctions after
cancer.”[26]
[27]
[28]
[29]
[30]
Various care strategies that can help survivor patients are mentioned in the scientific
literature, such as the development of support groups with the purpose of providing
an environment of cooperation, solidarity, and readaptation to the disease, multiprofessional
care team support to minimize the difficulties associated with the disease, doctor-patient
communication, and development of rehabilitation programs.[31]
[32]
[33]
[34]
However, there are strategies that may present disadvantages such as the deficiency
of clinical training by health professionals to perform an appropriate approach, because
many patients have personal difficulties and taboos about sexuality.[35]
[36]
About 65% of gynecologic cancer patients do not have their needs met; little is explored
about knowledge on the experience of supportive care for gynecologic cancer survivors
or the supportive resources available.[37]
In this regard, there is a need for a literature review to investigate new resources
that can be developed and incorporated into treatment and healthcare settings for
the benefit of patients.
The current review aimed to explore the main collateral effects on sexuality with
gynecologic cancer survivors after treatment and to identify the care strategies provided.
Methods
Search Selection Strategy
For the development of the present study, a systematic literature review was performed
based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol
(PRISMA-P).[38] The search for articles was performed in the following electronic databases: Scopus,
Web of Science, LILACS, MEDLINE, PsychINFO, and EMBASE. Searches in the electronic
databases was performed from January to February 2021. The search strategies were
changed according to the requirements of each database. Initially, two authors chose
independently the articles selected for eligibility, following a two-phase process.
The initial screening phase resulted in a restricted list of articles, including titles
and abstracts. In the second stage, the screening process involved reading the articles
in full text. The two reviewers independently assessed all articles for eligibility
concerning the selection criteria until consensus was reached. When there was disagreement
and no consensus was reached, a third author reviewed the articles and selected the
one with the greatest adherence to the research. The qualitative synthesis of the
selected papers was based on an integral lecture focusing on post-treatment gynecological
neoplasms ([Chart 1]).
Chart 1
Search terms and strategy
Search ID#
|
Search terms
|
Search mode
|
S1
|
female genital neoplasm OR uterine neoplasm OR vulvar neoplasm OR vaginal neoplasm
|
Boolean/Phrase
|
S2
|
ovarian neoplasm OR female genital cancer OR uterine cancer OR vulvar cancer OR vaginal cancer
|
Boolean/Phrase
|
S3
|
ovarian cancer OR female genital tumors OR uterine tumors OR vulvar tumors OR vaginal tumors
|
Boolean/Phrase
|
S4
|
ovarian tumors OR gynaecological cancer OR gynecological cancer OR gynaecological tumors OR gynecological tumors
|
Boolean/Phrase
|
S5
|
female genital carcinoma OR uterine carcinoma OR vulvar carcinoma OR vaginal carcinoma OR ovarian carcinoma
|
Boolean/Phrase
|
S6
|
sexual health OR sexuality OR sexual function
|
Boolean/Phrase
|
S7
|
patient-centered care OR patient care OR supportive care OR supportive care need* OR helping behavior OR humanization OR survivorship OR survival o OR r cancer survivorship
|
Boolean/Phrase
|
Inclusion and Exclusion Criteria
To be considered eligible, the following inclusion and exclusion criteria was applied
to all identified scientific articles.
Inclusion Criteria
-
Studies that investigate care support needs of women survivors of gynecological cancer
(post-treatment of the disease) with a focus on sexuality.
-
Studies employing quantitative and/or qualitative methods, regardless of research
design.
-
Studies published in English with readily available abstracts.
-
Studies performed with adult individuals ≥ 18 years old diagnosed with gynecological
cancer (endometrial, cervical, ovarian, and vulvar) including the effects and aftertreatment
mainly affecting sexuality.
-
Articles focusing on the medium and long-term effects of gynecological cancer.
-
Studies published as original articles in specialized journals between 2010 and 2020.
Exclusion Criteria
-
Studies in which care support needs of survivors of gynecological cancer focused on
sexuality were not explicitly discussed.
-
Studies conducted with patients with other types of cancer, whether primary or secondary.
-
Systematic reviews and individual publications within systematic reviews were excluded
so as not to duplicate the content.
Data Extraction and Analysis
Data from the included studies were extracted into a predefined data extraction table.
Data extraction was performed by a reviewer and then checked by a second reviewer
jointly and according to the agreement and consistency between them. A third reviewer
analyzed discrepancies. Three time periods were established:
-
Immediately after treatment (0 to 3 months post-treatment).
-
Long-term post-treatment effects (> 3 months to 5 years).
-
Mixed (Studies with patients from both time frames, that is, from 0 to 3 months to
5 years post-treatment.
The included studies were classified according to the type of studies conducted and
to the location of the tumor according to discussions with the research team. The
quality of the studies was independently assessed by two reviewers using the Mixed
Methods Appraisal Tool (MMAT).
Risk of Bias
The articles were independently assessed to maintain methodological quality. The negative
and positive points were analyzed and, at the end, a score from 0 to 4 was attributed
to each article (0 = no criteria fulfilled, 1 = fulfilled one criterion, 2 = fulfilled
two criteria, 3 = fulfilled three criteria, and 4 = fulfilled all four criteria).[39] When any disagreement occurred, the authors discussed them to reach a final agreement.
Qualitative Synthesis
After the search for studies in the databases, a screening was performed independently
by the review team by reading the titles and abstracts. This search in scientific
databases generated the return of a large number of articles, and the strategy adopted
was to ensure sensitivity on the specificity and compliance to the established criteria.
Thus, for the screening of studies, the sum of the total number of articles in all
databases was recorded; the titles were read quickly, allowing the selection of references,
and discarding those that did not fit the eligibility criteria established by the
review team. A free reference management software, Mendeley, was used to sort the
articles, count duplicate articles, and organize the references, thus providing greater
practicality and time optimization. The studies that passed the screening had their
full text retrieved, and the eligibility of studies was confirmed after reading the
full text and selection of studies that investigate support care needs of survivors
of gynecological cancer (post-treatment of the disease) with a focus on sexuality.
Results
Study Selection
Initially, 2,536 potential articles were identified: 102 through Scopus; 153 through
PubMed; 1,062 through EMBASE with a “not PubMed” filter; 760 through Medline; 25 through
Lilacs; 51 through a concurrent search of CINAHL and PsycINFO on the EBSCO platform;
and 383 through Web of Science. Duplicates were removed and 2,329 remaining articles
were evaluated based on title and abstract. Most were discarded because they did not
meet the inclusion criteria. Only 60 potentially relevant articles were retained and
assessed based on full text, leaving 34 included articles ([Fig. 1]).
Fig. 1 Flowchart of the process of search and selection of studies.
Study Characteristics
The studies included most frequently women who had been diagnosed with gynecological
cancer (n = 19; 56%). Only 1 study on cervical cancer was conducted with young adult women
(18 to 39 years old). The remaining studies (n = 5; 12%) reported experiences of gynecological cancer survivors regarding its adverse
effects and the care that needs to be received in the context of sexuality. The most
common countries where the survey was performed were: USA (n = 7; 21%), followed by Canada (n = 5; 15%) and the Netherlands (n = 4; 12%). Few studies (n = 3; 8.8%) included cancer survivors residing in rural or remote locations. Population
studies occurred most frequently at an average of 6 months after the end of treatment
(n = 18; 54%). The average sample size was 180 participants (range: 11 to 1,029). Most
studies had a cross-sectional design (n = 19; 56%). More than 50% of the included studies (n = 19; 56%) were published in the past 5 years. The included studies were mapped using
a descriptive synthesis of the domains of the needs, the study population (for example,
type of cancer, age), and the post-treatment of the disease with after primary treatment/early
survivorship ranging from 1 month to 3 years. Long-term survivorship after 3 years
and mixed phase care when samples are composed of survivors with different periods
after treatment ([Appendix 1, Supplementary material]).
Evaluation of the Methodological Quality of the Studies
All 34 studies selected and included in the systematic review were submitted to a
methodological assessment by the MMAT instrument; 13 received a score of 4 because
they met all criteria in the quality assessment, 19 received a score of 3 because
some topics, such as the interpretation of results, were not sufficiently supported
by valid data, 2 articles received a score of 2, and no article received the lowest
score of 1.
Main Side Effects of Sexuality Dominance in Women Survivors
According to the selected articles, low libido was identified in 18 studies and was
diagnosed as a major problem for gynecological cancer survivors. Therapeutic modalities
such as chemotherapy, radiation therapy, and surgeries performed for the treatment
of gynecological malignancies can contribute to this problem in various ways.[40]
[41]
[42]
[43] Sexual dysfunction is the main cause of suffering for the patient after gynecological
cancer treatment, and ∼ 70% of survivors experience these problems, such as vaginal
dryness, pain during intercourse, and vaginal stenosis.[14]
[15]
[16]
[17]
[18]
[44]
[45] These adverse effects can pose great challenges for survivors in the process of
readaptation after the treatment phase.[46]
[47]
[48]
[49]
[50]
[51] Pain during intercourse was a predominant symptom in 10 of the selected studies
and causes a great impact on the lives of women, as many avoid sex and abandon their
sex life due to fear of the pain they may experience during intercourse.[9]
[15]
[18]
[46] Vaginal dryness was prevalent in several studies, and it has been identified through
research that 70% of sexually active women experienced this side effect.[47]
[50]
[51] Currently, with the help of a variety of symptom management offerings, such as vaginal
lubricators and targeted therapies, this discomfort can be alleviated for patients.[30]
[37]
[49] Studies have reported difficulties for women in adjusting to their altered sex lives
and difficulties with intimacy with their partners.[52]
[53] As a consequence of these problems, many patients experience abandonment by their
husband or partner, who does not understand the new context of female sexuality after
treatment.[18]
[23]
[26]
[47]
[49]
[51]
[52]
[53]
[54] Menopausal symptoms are another side effect associated with female tract cancer,
including vulvar, cervical and ovarian cancer.[41]
[42] Especially in younger women, this causes a devastating effect that interferes with
their body image and psychology.[26]
[36] Sexual distress, although not a physical problem like vaginal symptoms, interferes
directly with the psychological sphere (for example, anxiety or depression).[18]
[36]
[50] Many women have a poorer quality of life and unfortunately do not look for psychological
intervention, which occasionally increases distress rates.[55]
[56]
[57]
[58] A summary of side effects associated with gynecologic cancer patients who had their
sexuality affected after treatment is presented in [Table 1].
Table 1
Main sexuality complaints of women survivors after treatment
Sexuality
|
Survival phase
|
After treatment
|
Long
|
Mixed*
|
Low libido
|
(13, 23, 26, 37, 45, 51, 58)
|
(27, 56)
|
(10, 15, 17, 18, 30, 47, 48, 54, 55)
|
Vaginal dryness
|
(17, 23, 26, 37, 43, 50)
|
(46, 49, 51)
|
(18, 48, 47, 54, 52)
|
Disinterest in sexual activity
|
(15, 23, 26)
|
(49)
|
(14, 18, 41, 48, 50, 55, 59)
|
Pain during intercourse
|
(9, 15, 58)
|
(51, 56)
|
(14, 18, 41, 55, 59)
|
Lower sexual satisfaction
|
(17)
|
(46, 56)
|
(48, 47, 54, 55, 52)
|
Vaginal stenosis / shortening
|
(58)
|
−
|
(47, 54, 55, 52)
|
Menopause symptoms
|
(10, 26, 36)
|
(51)
|
(48)
|
Sexual distress
|
(18, 26, 36, 57, 58)
|
(49, 51)
|
(48, 54)
|
Note: Mixed-phase comprehends studies that included participants from different treatment
periods after cancer, i.e., it covers both studies just after the end of treatment
as well as those that ended a few years ago.
Care and Medical Support Strategies for Collateral Effects on Sexuality
Six strategies were selected to manage adverse effects on sexuality after treatment:
-
Patient-clinician communication
Healthcare providers should understand the sexual, physical, and psychosocial needs
of survivors because after treatment the psychological distress of cancer patients
is already high, and many professionals overestimate this psychological suffering
or fail to detect it, which can lead to detrimental results.[13]
[47]
[57] Open sexual communication is an opportunity for patients to seek information and
emotional support to adapt positively to sexual changes, as they often have to face
fear and stigma related to the disease, complications of treatment. It is an opportunity
for patients to help adjust to a “new normal” even though they have ongoing and emerging
health problems.[26]
-
Developing strategies and practices for sexuality care
The need to design and test known implementation strategies to integrate and disseminate
scientific evidence-based interventions into practice for the benefit of cancer survivorship
research. And the development of interventions such as implanting program in a gynecological
oncology outpatient clinic formed by health professionals to receive information about
sexual health care, the changes that may occur in their bodies and mainly an individual
approach to realize the needs of each of the patients.[41]
[44]
-
Individualized care plan
A care plan should be made based on an assessment of the needs of the patients and
reach those who need rehabilitation to obtain long-term quality of life of their sexual
function.[10]
[27]
[37]
[58]
[59] This individualized approach would also allow for greater flexibility and effective
sexual health assessment with the possibility of discussing symptom management and
strategies to improve sexual function and satisfaction.[41]
-
Multiprofessional team support
Multiprofessional team support could help the sexual functioning of gynecological
cancer survivors in the long term, as it is composed of physicians, psychologists,
social workers, and physiotherapists.[43] Many women suffer with sequelae from treatment, such as vaginal discomfort, and
physiotherapy treatment would help with pelvic floor exercises that could decrease
this problem. The patients would also benefit from the help of psychologists accompanying
them in this difficult period of changes, especially bodily and mental ones.[14]
[23]
[50]
[51]
-
Development of rehabilitation programs
The development of rehabilitation programs for survivors of gynecological cancer is
very important because they can help analyzing the discomforts of sexual complaints
and improve health as a whole.[9] Many female cancer survivors receive part of the medical treatment; however, frequently,
psychosocial issues are not properly addressed. This is problematic because psychosocial
needs impact the lives of patients in various ways, both personal, social, psychological,
and financial. However, existing survival care is often targeted with a focus on the
disease, not covering other aspects of the life of the patient, such as the social
stigma on cancer, which is often seen by society as a death sentence and with little
chance of the patient having quality of life. However, there are experiences in studies
that confirm that, with the implantation of intervention groups formed by professionals
such as physiotherapists, sexual counselors, and psychologists helped patients in
their sexual difficulties and resulted in improvements in their psychological and
physical aspects.[23]
-
Support networks
The creation of support networks aims to understand the emotional concerns and physical
changes that interfere with the sexual identity of female cancer survivors and to
offer the most appropriate support according to their specific needs.[42] Survivors have been living with or beyond cancer for a longer time, and there is
a growing need to focus on health strategies that improve care and support to ensure
a healthy and active life for as long as possible.[50] Because many women do not have their needs met, such as psychosocial and psychosexual
needs, support networks corroborate so that they are welcomed, listened to, and supported
to maintain their recovery and better manage the consequences of treatment.[9]
[40]
[44]
[Chart 2] demonstrates the supportive care strategies that can be offered to female cancer
survivors post gynecological cancer treatment for sexuality complaints.
Chart 2
Matrix of healthcare strategies for post-treatment sexuality complaints
Study
|
Care Strategies
|
Patient-clinician communication
|
Development of rehabilitation programs
|
Multiprofessional team support
|
Individualized care plan
|
Development of strategies and practices for sexuality care
|
Creating a support network for survivors
|
Carter et al. (2010)[46]
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✓
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Levin et al. (2010)[47]
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✓
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Walton et al. (2010)[36]
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✓
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✓
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Beesley et al.(2013)[54]
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✓
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✓
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Grover et al. (2012)[37]
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✓
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Stavraka et al. (2012)[52]
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✓
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Le Borgne et al. (2013)[55]
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✓
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Afiyanti et al. (2013)[48]
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✓
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Sekse et al. (2013)[56]
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✓
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Loyd et al. (2014)[40]
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✓
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✓
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McCallum et al. (2014)[41]
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✓
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✓
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✓
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Vermeer et al. (2015)[18]
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✓
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✓
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Hopkins et al. (2015)[49]
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✓
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Lee et al. (2015)[13]
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✓
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Rowlands et al. (2015)[42]
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✓
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✓
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Westin et al. (2015)[58]
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✓
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Bakker et al. (2016)[44]
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✓
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✓
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Corrêa et al. (2016)[45]
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✓
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✓
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Mikkelsen et al. (2016)[10]
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✓
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Bakker et al. (2017)[9]
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✓
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McCallum et al. (2017)[16]
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Lutgendorf et al. (2017)[43]
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✓
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Teng et al. (2014)[57]
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✓
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✓
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Chow et al. (2018)[26]
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✓
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Mattsson et al. (2018)[50]
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✓
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✓
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Plotti et al. (2018)[27]
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✓
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Abbott-Anderson et al. (2020)[15]
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✓
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Fischer et al. (2019)[17]
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✓
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✓
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Hubbs et al. (2019)[30]
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✓
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Bacalhau et al. (2020)[53]
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Haryani et al. (2020)[51]
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✓
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Roberts et al. (2020)[23]
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✓
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Discussion
The main objective of the present systematic review was to explore the main complaints
in the field of sexuality with women survivors of cancer of the gynecological tract
after treatment and to identify the care strategies that can be offered for these
complaints.
When doing oncological treatment of the female tract, many negative symptoms occur
in women, and each type of tumor causes an effect, such as vulvar cancer. Although
surgery and treatment have become less radical over the decades, it can still cause
scarring and mutilation of the external genitalia, such as local excision to radical
vulvectomy and removal of the clitoris, which can affect various nerves and blood
vessels involved in important sexual, anal, and/or urinary functions.[26]
[31] Thus, the main complaints of affected women resulting from this treatment is the
high risk of psychological distress, low libido, and dissatisfaction in the relationship
with their partner.[60]
[61] And because vulvar cancer is a neoplasm with a rare condition, there is scarcity
of studies on the impact of the disease and little is known about the real emotional,
social, and psychological impacts on surviving patients.[2]
[4]
[8] Studies suggest that, for these cases, the care strategy that can be offered to
surviving patients is psychological and therapeutic support, because many of them
have significant levels of suffering, with an altered perception of their body image
and feelings of isolation and embarrassment resulting from external genital mutilation.[11]
[12]
[13]
Patients who underwent treatment for cervical cancer may also have a worsening quality
of life and complaints in the field of sexuality, because certain treatments, such
as radiotherapy, induce long-term toxicity with decreased urinary and gastrointestinal
function; as a consequence, the main complaints in sexuality is vaginal shortening
and atrophy, leading to dyspareunia and loss of sexual desire.[13] As a care strategy to prevent the atrophy process that affects sexual function,
early initiation of local estrogen therapy is recommended; however, unfortunately,
there is no definitive therapeutic option that fully preserves the quality of life
of cervical cancer patients, because each treatment induces more or less low self-esteem
and variations in reactions to the treatment.[26]
[31]
In the biopsychosocial aspect, a serious problem to be faced arising from the treatment
performed for cervical cancer is stigma and discrimination; as found in a study conducted
in Brazil, the respondents reported that they suffered prejudice and were considered
by the society in which they lived as dirty, lazy, and promiscuous, and due to this
condition, many of them had their social life impaired.[62]
The studies reviewed highlighted that ovarian cancer is usually diagnosed late and
that the disease is detected in advanced stages; however, thanks to recent advances
in treatment options, the number of surviving women is increasing.[29]
[42] However, patients who underwent chemotherapy, radiation, or surgery to remove the
ovaries experience as a complaint in sexuality the psychosexual morbidity (physical
and psychological sexual problems), vaginal atrophy due to the drop in estrogen levels,
and reduction of libido as a consequence of the reduction in testosterone and androstenedione
levels.[35]
[43]
Throughout the trajectory of the patient, cancer-related symptoms and side effects
of the treatment cause significant psychosocial morbidity that directly reflects on
their lives.[23] The psychosocial suffering related to sexual dysfunction and visual effects such
as scars and hair loss may directly affect the perception of the own self-image of
the woman, therefore, referral to specialists is necessary to treat this multiplicity
of chronic problems that occur after treatment.[9]
[21]
[58] In the literature, it is widely reported that regular and prolonged use of vaginal
dilators or vibrators can prevent and delay the development of vaginal adhesions and
stenosis; the use of water-based lubricants and estrogen application are also recommended
to promote vaginal regeneration and decrease sexual complaints; however, there are
cases of women whose sexual health problems have become chronic, needing additional
support.[35]
In this sense, the strategy of doctor-patient communication regarding sexual health
is essential and can help patients face these challenges.[23] However, this care strategy can be challenging in the oncologic scenario, since
despite its importance, there are obstacles in this bond, and on several occasions,
health professionals find it difficult to approach the sexuality and intimacy of the
patient due to lack of time and training and to the fear that the patient will be
embarrassed to talk about her personal life.[12]
[45]
An intimate relationship is a psychosocial process strongly experienced in the female
sexual function and many difficulties faced by women survivors are a result of this.[19]
[34] The partner perceives the changes that occur after treatment, whether physical or
emotional, and in some cases the roles may change, with the partner being the main
caregiver of the patient.[15]
[19] In the biopsychosocial aspect, this has a very relevant factor, because many of
them feel unprepared and without the correct information of care, which brings a negative
psychological, social, and even financial burden, because in many situations it is
necessary to give up the job to be able to give the support that the patient needs.[11]
[13]
[60] Intimate intercourse is a psychosocial process strongly experienced in the female
sexual function and many difficulties faced by surviving women are a result of this.[19]
[34] In addition, sexual dysfunctions are closely linked to the stages of the cycle of
sexual response, that is, the inability of the sexual act to be satisfactory for the
couple. And with women who have undergone cancer treatment, this is more evident because
many lose their will and libido, not only because of their physical appearance, but
also because they are very psychologically shaken, which further distances them from
their partners.
The limitation of the present research lies in the design of the strategies used and
are not considered to be other adverse symptoms that survivors face in the context
of sexuality after gynecological treatment.
Conclusion
The main complaints identified in the scientific literature regarding the post-treatment
of cancer survivors were low libido and lack of interest in sexual activity. The care
strategy that could be adopted would involve initial consultations with medical personnel
and a thorough review of complaints. and symptoms reported patient's hair to find
cause, which may be physical or psychological. Another complaint often referred to
in the selected studies is vaginal dryness and, as a treatment strategy, the use of
vagina moisturizers could improve humidification and thus reduce this discomfort in
women. Pain during intercourse and stenosis or shortening of the vagina were also
identified as common symptoms in women after cancer treatment; therefore, adopting
healthcare strategies and actions can reduce pain and better deal with these complaints,
such as mobilizing rehabilitation focused on sexual health with the participation
of specialist professionals such as physiotherapists to analyze the case of each patient
to help her in the best possible way. And, finally, sexual anxiety is another common
complaint cited in the academic literature that causes severe mental and psychological
problems for patients. An approach to care that could be used would be open communication
and sincere dialogue between the physician and the patient with an integrative therapeutic
approach to identify the major problems affecting them to provide an individualized
care plan with the support of a multidisciplinary health team. It is suggested that
future research should conduct qualitative studies to explore strategies that are
acceptable in the perceptions of patients of suggesting improvements.