Article Text

A longitudinal study of sexual health and quality of life in endometrial carcinoma survivors
  1. Amrita Datta1,
  2. Thomas S Ram2,
  3. Reka Karuppusami3,
  4. Anitha Thomas1,
  5. Ajit Sebastian1,
  6. Vinotha Thomas1,
  7. Rachel George Chandy1 and
  8. Abraham Peedicayil1,4
  1. 1 Gynaecologic Oncology, Christian Medical College and Hospital Vellore, Vellore, Tamil Nadu, India
  2. 2 Radiation Oncology, Christian Medical College and Hospital Vellore, Vellore, Tamil Nadu, India
  3. 3 Biostatistics, Christian Medical College Vellore, Vellore, Tamil Nadu, India
  4. 4 Gynecologic Oncology, Sultan Qaboos Comprehensive Cancer Care and Research Center, Muscat, Oman
  1. Correspondence to Dr Abraham Peedicayil, Gynecologic Oncology, Sultan Qaboos Comprehensive Cancer Care and Research Center, Muscat, 135, Oman; apeedicayil{at}yahoo.com

Abstract

Objectives This study aimed to assess sexual health and quality of life (QoL) in endometrial cancer survivors and the factors influencing these variables.

Methods A mixed method design comprising quantitative (cohort design) and qualitative (face-to-face interviews) aspects was chosen. A total of 132 patients who underwent surgery alone, surgery followed by adjuvant vaginal brachytherapy, or surgery followed by chemotherapy and radiation were included. Female Sexual Function Index (FSFI) and Functional Assessment of Cancer Therapy General (FACT-G) questionnaires were used to assess the participants’ sexual health and QoL at 6 months and 1 year post-treatment. Multivariate logistic regression models were used to analyze the factors associated with general and sexual well-being.

Results At 1 year, 89% of the participants still had low sexual function scores. Survivors over 50 years (OR 284.7, 95% CI 13 to 364, p<0.001) and educated below graduate level (OR 26.8, 95% CI 2 to 370, p=0.014) had low sexual function scores. Patients who had surgery alone had better QoL than those who received adjuvant radiation. Women who had surgery, chemotherapy, and radiation had the lowest QoL scores (OR 6.4, 95% CI 2.1 to 19.5, p=0.001). All scores improved with time.

Conclusions This study demonstrated the high prevalence of low sexual function and poor QoL in endometrial cancer survivors. There was a communication gap between the women and their partners as well as their healthcare providers. This study highlights the need for discussion about the survivors’ sexual well-being and QoL.

  • Surgery
  • Radiotherapy
  • Uterine Cancer
  • Quality of Life (PRO)/Palliative Care

Data availability statement

Data are available upon reasonable request.

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WHAT IS ALREADY KNOWN ON THIS TOPIC

  • Cancer treatments impact psychological, spiritual, and sexual well-being of women. Age, family income, and time from treatment have been shown to impact quality of life.

WHAT THIS STUDY ADDS

  • This study from a low resource country provides new perspectives, and also looks at treatment modality as well as qualitative aspects impacting sexual health and quality of life longitudinally.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

  • The findings of this study emphasize the need for discussing quality of life and sexual dysfunction prior to, and in the follow-up after, cancer treatment. Choice of treatment modality also needs to be considered.

Introduction

Endometrial cancer is the most common gynecological malignancy in high-income countries,1 affecting young nullipara as well as postmenopausal women. Most cases are detected early, and have a favorable prognosis.1 2 The standard of care is total hysterectomy with or without lymph node assessment. Post-operative adjuvant radiation and/or chemotherapy are administered in advanced or high-risk cases.3 Though a few studies have explored the quality of life (QoL) in cancer survivors,4 5 the impact of treatment on sexual health, an important component of well-being, remains poorly elucidated.

Sexual dysfunction, an often-overlooked complication of gynecological cancer treatments, refers to issues during any phase of the sexual response cycle.6 Studies report high levels of sexual dysfunction in cancer survivors.6 7 We sought to evaluate sexual function and QoL at 6 months and 1 year after treatment. Secondary objectives included assessment of the factors affecting sexuality and QoL.

Methods

Study Design

This study involved mixed method research comprising both quantitative and qualitative aspects. The quantitative part comprised a cohort design while the qualitative part involved in-depth interviews. After approval from the Institutional Review Board, all patients having endometrial cancer were screened for the study. Eligible patients were recruited and followed up at 6 and 12 months. The study was conducted in the Departments of Gynaecologic and Radiation Oncology of a teaching hospital in India.

Participants

Women were considered eligible if they: (1) had treatment of endometrial cancer between June 2018 and June 2019, (2) underwent staging laparotomy/laparoscopy as the primary mode of treatment and, (3) gave written informed consent. Patients with advanced or recurrent malignancies, psychiatric illness, or unwillingness to consent, were excluded from the study.

Based on their treatment, participants formed three groups. Group A patients underwent only surgery while group B had surgery followed by vaginal brachytherapy consisting of three fractions of 7 Gy high-dose-rate brachytherapy. Group C underwent surgery, chemotherapy (four cycles of 3-weekly carboplatin area under the curve 5 or 6 and paclitaxel 175 mg/m2), and external beam radiation (50.4 Gy in 25 fractions as intensity modulated radiation therapy), with or without brachytherapy.

Of 153 eligible patients, 143 consented to participation. There were six incomplete questionnaires while five were lost to follow-up. Eventually, 132 patients were included. Each of the three groups had 44 patients (Figure 1).

Figure 1

Flow diagram of patient population. EBRT, external beam radiation therapy; FACT-G, Functional Assessment of Cancer Therapy General; FSFI, Female Sexual Function Index; VBT, vaginal brachytherapy.

Data Collection

We used the Female Sexual Function Index (FSFI) to measure sexual function and the Functional Assessment of Cancer Therapy (FACT-G) questionnaire to assess QoL during their follow-up visits at 6 months and 1 year post-treatment. A trained social worker or staff nurse helped the participants answer the questionnaires.

We conducted face-to-face interviews with five selected participants. Interviews were held, ensuring privacy, by the principal investigator and a nurse. Each session lasted approximately 60–90 min, covering topics like survivors’ sexual experiences, interactions with partners or family members, and the impact of treatment modalities on their sexuality and well-being. Interviews were audiotaped, transcribed verbatim, and arranged according to themes into broad descriptive categories (open coding).

Validated Measures

FACT-G (version 4) is a 27-item validated cancer-specific questionnaire assessing overall QoL,8 and is divided into four core subscales for physical, social, emotional, and functional well-being. Scores ranged from 0 to 108 and higher scores denoted better QoL. In our study, the median FACT-G score at 1 year was taken as the cut-off to suggest a poor or good QoL.

The FSFI is a 19-item questionnaire assessing sexual function in six domains, namely desire, arousal, lubrication, orgasm, satisfaction, and pain. Scores range from 2.0 to 36.0.9 An FSFI score ≤26 suggests possible sexual dysfunction.

Addressing Bias

All endometrial cancer patients operated on during the recruitment period were included if eligible to avoid selection bias. The change in FACT-G and FSFI scores for each participant was calculated so that they were their own controls.

Sample Size

Assuming FSFI scores of 30 for the surgery group, 28 for the brachytherapy group, and 26 for the chemotherapy and radiation group, and a standard deviation (SD) of 6, with alpha (type I error)=0.05 and beta (power)=0.8, 45 in each treatment group would be required. Similarly, for FACT-G scores of 60, 58, and 56 at 12 months, 45 in each group would be required.

Statistics

For continuous data, descriptive statistics were used to calculate the mean, median, range, and SD. Frequencies and percentages were presented for categorical data. χ2 or Fisher’s exact test were applied to find an association between categorical variables. One way analysis of variance (ANOVA) and Kruskal-Wallis test determined the relationship between variables among different groups. Bonferroni’s correction was used for post hoc analysis. Logistic regression identified factors independently associated with FSFI and FACT-G scores. All tests were two-sided. P value <0.05 was considered significant. Analyses were done using the Statistical Package for Social Sciences (SPSS) software version 25.0 (International Business Machines (IBM) Corp, Armonk, NY).

Results

Quantitative

Table 1 elaborates on the sociodemographic characteristics. The mean (SD) age was 54 (8) years and mean body mass index was 29 (5) kg/m2. Most women were married and from rural Tamil Nadu. Table 2 highlights the surgico-pathological aspects. Most women had open surgery for endometrioid cancer stages I or II.

Table 1

Demographic characteristics of patients treated for endometrial cancer

Table 2

Surgical characteristics among different treatment groups

At 6 months, all women in our study had sexual function scores below the cut-off, but after a year 103 out of 116 married patients (88.8%) had low scores. Lower age strongly correlated with better FSFI values (p<0.001). Women with higher education had higher FSFI scores at the end of 1 year (p=0.014) (Table 3). The individual FSFI domain scores showed no significant difference among the treatment groups (Online Supplemental Files 1 and 3). However, the change in scores of all domains from 6 months to a year was statistically significant in all groups (p<0.001; Kruskal-Wallis test).

Supplemental material

Supplemental material

Table 3

Factors associated with low FSFI scores (sexual function) at 1 year: univariate and multivariate logistics regression (n=116)

Similarly, younger aged patients recorded significantly better FACT-G scores (p=0.001), but education levels were not statistically significant. Variables like body mass index, place of residence or ethnicity, socioeconomic or marital status as well as the comorbidities of the patients had no impact on either QoL or sexual function of the survivors. Laparoscopy and the final histology were not found to be statistically significant in our participants.

Most FACT-G domain scores increased significantly with time (p<0.001; one-way ANOVA; Online Supplemental Files 2 and 4). Group A subjects performed better than the others in terms of physical, emotional, and social well-being at the end of 6 months and in all the domains after a year. There was a significant difference in FACT-G scores of group A (QoL better after surgery alone) in comparison to the other two groups (p=0.027 and p<0.001 after post hoc Bonferroni correction). Patients who had surgery, chemotherapy, and radiation had lower FACT-G scores than those who had only surgery (OR 6.4, 95% CI 2.1 to 19.5, p=0.001) (Table 4).

Supplemental material

Supplemental material

Table 4

Factors associated with low FACT-G scores (QoL) at 1 year: univariate and multivariate logistics regression (n=132)

Qualitative

The following themes emerged from the interviews.

Theme 1: Relationship Worries

All participants were unhappy about their relationship with their partners. They narrated how they craved conversation. All had grown-up children who were also not very attentive to them as they were busy with their own lives. They could not talk about sex with their spouses. They admitted feeling lonely and socially alienated after having cancer.

‘Nobody talks to me neither can I talk to them about my loneliness or my fears.’ (Participant 1, 47 years)

‘There was no one to talk to. My husband and daughter are busy with their own lives.’ (Participant 2, 50 years)

Theme 2: Perceived Societal Beliefs

Most participants had not resumed sexual activity after the surgery. They felt having sexual desires at an older age was something to be ashamed of and worried about what society would think.

‘We had some intimacy in the last 7 to 8 years which stopped altogether after my illness. I’m old and have grown up children. Do old people do these activities? This is not the time. My daughters will think I'm mad.’ (Participant 3, 52 years)

‘People of our age are not supposed to do these things. Does it even matter after the cancer diagnosis and treatment.’ (Participant 4, 50 years)

Theme 3: Worries about Body Image

Two of the participants wondered if they were attractive enough in the eyes of their spouses after surgery. One of them recalled the hair loss post-chemotherapy and loss of self-esteem.

‘I lost a lot of hair and wore a scarf. It was so depressing.’ (Participant 2, 50 years)

‘I think I'm not attractive in his eyes now.’ (Participant 1, 47 years)

Theme 4: Impact of Treatment Modality

All the women were annoyed with the long-term side effects of the treatments. They recalled having perineal pain, easy fatigability, loss of appetite, and urinary or bowel complaints which impeded their daily life. They recalled doing household chores even when they were not fully fit, and lamented about the lack of a support system at home and outside. Although all had mostly recovered from their ailments, they were still perturbed about their experience.

‘I had diarrhea, urinary problems, and vomiting. I’m better and don’t want to remember the pain.’ (Participant 2, 50 years)

‘It was horrible after surgery and radiation. I felt like I would die due to all the pain.’ (Participant 5, 61 years)

Theme 5: Anxiety

All the participants were apprehensive about the cancer coming back. Fear of death loomed large on their minds. Financial insecurity added to their emotional woes. They also worried about their children’s future. All these had taken a toll on their emotional health. Self-care and sexual concerns had taken a backseat.

‘I worry about death. Will my cancer come back? My daughter must get married. All our discussions now are about my treatment. Sex was the last thing on our minds.’ (Participant 2, 50 years).

Discussion

Summary of Main Results

We found poor sexual function scores in all domains: desire, arousal, lubrication, orgasm, satisfaction, and pain. Six months after treatment for endometrial cancer, both sexual health and QoL were similar in the treatment groups. Irrespective of the initial treatment, sexual health and QoL improved over time. Those who had only surgery had the best QoL a year after treatment. Age above 50 years and lack of college education were risk factors for low sexual function scores. Adjuvant therapy was a risk factor for the low QoL scores.

In-depth interviews revealed that women felt alienated from their husbands, worried about body image, were bothered by the side effects of treatment, and were anxious about cancer recurrence. Women ignored sexual issues and felt their partners did not understand them.

Results in the Context of Published Literature

Sexual health is an important aspect of a women’s sense of well-being, and ensuring the same is a vital component of care in endometrial cancer survivorship.7 This study was on predominantly Hindu rural women with low levels of education, poor housing, and societal restrictions. The diagnosis and treatment of cancer were a deterrent to normal sexual functioning. All our patients had poor sexual function scores at 6 months. Reports have estimated up to 89% of patients with early endometrial cancer have sexual dysfunction.7 10 11 Such high rates can be due to elderly age and multiple comorbidities. Vaginal dryness and dyspareunia were the most common complaints of the survivors, as noted in a similar patient cohort.11

Sexual functioning is complex and influenced by various factors, including cultural and psychological. Earlier studies found age at diagnosis, body mass index, educational status, and occupation influenced sexual health, and QoL of endometrial cancer survivors.10–19 Laparotomy has been reported as a risk factor for sexual dysfunction. In the literature, minimally invasive surgery resulted in better sexual functioning and QoL.12 18 20 Most of our patients had laparotomy but we were not able to show improved sexual function with laparoscopy.

Adjuvant vaginal brachytherapy or external beam radiation therapy with chemotherapy tended to result in lower sexual function scores in our study. Other reports have not found a difference in sexual functioning between patients who had only surgery and those who received only brachytherapy following surgery.7 10 An earlier study reported that sexual dysfunction was more frequent in patients undergoing combined treatment modalities.21 Radiation could lead to vaginal stenosis requiring the use of vaginal dilators, but these were not routinely prescribed. Patients may not use vaginal dilators or lubrication as instructed.11 We found age and education level of the survivors to be significant determinants of sexual health, but there was no association with other demographic parameters. Though sexual scores were initially very low in our cohort, there was a significant improvement in FSFI scores over all domains with time as reported in an earlier study.15

Healthy sexual functioning improves QoL.15 Severe adverse events and reduced health-related QoL have been seen in patients receiving chemoradiation during the first year of treatment for endometrial cancer.20 21 FACT-G scores in all our groups increased over the span of a year. Our participants who had only surgery were found to have the best QoL at 6 months and 1 year after treatment. Patients treated with brachytherapy reported better social functioning and lower symptom scores for diarrhea, fecal leakage, and limitation in daily activities due to bowel symptoms as compared with external beam radiotherapy.20 Women receiving combined treatment reported more severe grade 3 adverse events than the ones receiving only brachytherapy in the first year of treatment.21 Till a year post-surgery, women were susceptible physically and psychologically, dealing with the aftermath of their treatment.10 22 We also found that those receiving adjuvant chemoradiation had the worst QoL in comparison with the other two groups. However, unlike studies where adjuvant brachytherapy did not significantly affect QoL and sexual health,23 our brachytherapy group had lower FACT-G values than those who had only surgery. Regardless of the treatment received, survivors are at risk of poor QoL as reported earlier.20 The improved scores of emotional and functional domains of QoL in our population could be attributed to healing with time and the support of family members and social workers. Although we could not demonstrate an advantage for laparoscopy, other studies have shown better QoL with laparoscopy.24 25

The face-to-face interviews revealed that patients considered sex taboo and did not actively seek information about sexual well-being. Societal perceptions of increasing age and menopausal status also hindered an active sexual life. There was a communication gap between the endometrial cancer survivors, their partners as well as healthcare providers. Side effects of radiation and chemotherapy (dyspareunia, lack of lubrication, vaginal stenosis) were often accepted as inevitable and not discussed.

Interventions such as education on sexual health and providing vaginal lubricant and dilators should become routine clinical practice. Distressed women should receive sex therapy, behavioral therapy, and sessions on mindfulness to combat negative thinking and stress.26 27

Strengths and Weaknesses

The strength of our study was that the qualitative angle supplemented the quantitative analysis. Validated questionnaires to assess sexual health and QoL were used. We used multivariate regression to assess risk factors, controlling for demographic and disease variables. A limitation of the study was that there was no baseline documentation of sexual function and QoL. The follow-up period was only a year which, although sufficient for surgery, might not have captured late radiation problems. It would have been good to study the effect of cancer treatment on sexuality on just the women who were sexually active before the cancer diagnosis. Another limitation was that only screening questionnaires were used, and psychological distress was not assessed.

Implications for Practice and Future Research

Endometrial cancer survivors and their spouses need to be screened for sexual problems and could meet with a psychologist at follow-up visits if they are distressed. The use of vaginal dilators and lubricants needs to be emphasized. Strengthening physician–patient interaction would enhance survivorship programs. Cross-cultural qualitative research and prospective studies with longer follow-up are warranted. The effect of newer radiation techniques on sexual health needs to be better elucidated. Interventions to improve QoL and sexual well-being should be evaluated.

Conclusion

Sexual dysfunction is high among endometrial cancer survivors. Increased age and poor education levels were risk factors for sexual well-being, while adjuvant therapy was associated with poor QoL. Communication between the survivors and healthcare workers is vital in approaching this sensitive issue.

Data availability statement

Data are available upon reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by Research & Ethics Committees of the Christian Medical College, Vellore, IRB # 12053-OBSERVE dated 3 June 2019. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors graciously acknowledge the efforts of Dr Vinitha Ravindran in framing the qualitative part of this study.

References

Supplementary materials

Footnotes

  • Contributors AP and TSR conceptualized and designed the study. AD collected the data and drafted the initial manuscript. RK performed the statistical analyses. All authors critically reviewed the earlier versions of the manuscript and approved the final submitted version. AP is responsible for the overall content as guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.