Sexual dysfunction and its impact on quality of life among female haematological cancer patients: a cross-sectional study in Malaysia.

Background

Female sexual dysfunction (SD) is generally understudied in the general population, although the prevalence has been reported to be as high as 41% in women of reproductive age [ 1 ]. In Asia, where topics on sexual health are usually avoided, a higher prevalence rate of SD was reported when compared to Western populations [ 2 ]. This was further confirmed in a study conducted among female healthcare workers in Singapore, where more than half of them (56.0%) reported SD [ 3 ].

Sexuality is one of the unmet needs among cancer survivors, and this has not been adequately addressed globally [ 4 , 5 ]. Cancer and its related treatments negatively affect sexual function and quality of life (QoL) [ 6 , 7 ]. The effects of chemotherapy and radiotherapy commonly used to treat cancers do not only affect hormone levels, which may induce early menopause; other side effects such as alopecia and nausea are also significant contributory factors, which can lead to reduced interest in sexual activities [ 8 , 9 ]. In addition, the indirect effect, such as concomitant psychological stress associated with cancer diagnosis, has been demonstrated to be associated with worse sexual function [ 10 , 11 ].

Recent meta-analyses on female cancer patients demonstrated an overall high prevalence of SD: 73.4% in women with breast cancer and 75.0% with colorectal cancers [ 12 , 13 ]. Several studies have also consistently shown that health-related QoL (HRQoL) was affected by the diagnosis of cancer and sexual problems [ 14 , 15 ]. In spite of this, there is little information on sexual functions and QoL among female cancer patients, in particular, those in Asian communities. The majority of the studies focused on breast cancer and other solid tumours, with a paucity of information on female patients with haematological cancers. The few studies that focused on patients with haematological cancers reported sexual problems were more prevalent in female survivors when compared to their male counterparts [ 7 , 16 ].

The lack of data on female patients with underlying haematological cancers warrants further study, especially in the Asian population. Therefore, the primary aim of this study is to determine the prevalence of SD in these patients and its associated factors. The secondary objective is to explore the impact of SD on QoL in these patients.

Methods

Study design and participants

This cross-sectional study was conducted at Universiti Malaya Medical Centre (UMMC), a quaternary hospital in Malaysia, and involved the consecutive invitation of patients with haematological cancers from the years 2014 to 2016. Inclusion criteria encompassed females aged 18 years old and above, engaged in an intimate relationship, with confirmed haematological malignancy, and either on active treatment or having completed treatments. Exclusion criteria comprised those who were pregnant at the time of the interview, had undergone previous major gynaecological surgery or pelvic irradiation, had a history of other malignancies, or had a psychiatric illness. The study received approval from the Medical Ethics Committee at UMMC (Reference Number: 1024.3) and adhered to the principles of the Declaration of Helsinki. Written informed consent was obtained from all participants.

Procedures

Demographic data including current age, ethnicity, marital status, education level, comorbidity, menopausal status, type of haematological malignancy, age at treatment initiation, types of active treatment received, and status of treatment were obtained through patient interview and examination of the medical records. Participants underwent assessments using the Female Sexual Function Index (FSFI), the Hospital Anxiety and Depression Scale (HADS), and the European Organization for Research and Treatment of Cancer QLQ-C30 (EORTC QLQ-C30) version 3.0 questionnaire. Patients were instructed to respond to the questionnaires in English, Malay, or Chinese independently, based on their language preferences [ 17 – 22 ]. In cases of uncertainty, participants were encouraged to seek clarification from the investigators. All assessments were completed independently by participants on the same day as the interview.

Operational definition

Haematological cancers were grouped into four types: ‘lymphoma’, ‘acute leukaemia’, ‘chronic leukaemia’, and ‘myeloma and others’. A patient is considered to have achieved menopausal status when they have experienced absence of menstruation for at least 1 year [ 23 ]. Active treatment modalities for haematological cancer patients include chemotherapy, the combination of chemotherapy and radiotherapy, and the combination of chemotherapy with haemopoietic stem cell transplantation (HSCT). Immunotherapy may be added to each of these treatment regimens. Patients are considered to have completed treatment if they have received all courses of treatment regimens in accordance with National Comprehensive Cancer Network® or European Society for Medical Oncology guidelines. Otherwise, they are still in active treatment.

Research tools

Female sexual function

FSFI is a validated self-reported multidimensional questionnaire that has been demonstrated to adequately measure sexual function in female cancer patients [ 24 ]. Consisting of 19 items, it assesses 6 domains: desire, arousal, lubrication, orgasm, satisfaction, and pain. Each domain has the highest score of six, with a higher score indicating better sexual function. The FSFI exhibits excellent reliability for both the total score (Cronbach’s α coefficient, 0.97) and subscales (Cronbach’s α coefficient, 0.89–0.96) [ 24 ]. In this study, a total score of less than 26.55 was used to identify SD [ 25 ].

Psychological assessment

To assess the psychological distress of the patients, we used the HADS. The HADS consists of 14 items, divided into two subscales: anxiety (HADS-A) with 7 items and depression (HADS-D) with 7 items, each rated on a point scale. Both the anxiety and depression subscales have a maximum score of 21. Scores ranging from 0 to 7 on either subscale are considered ‘normal’, while scores of 8 and above indicate the presence of psychological stress [ 26 ]. The HADS-A demonstrates a Cronbach’s α coefficient ranging from 0.69 to 0.93 (mean 0.83), and the HADS-D has Cronbach’s α coefficient ranging from 0.67 to 0.90 (mean 0.82) [ 27 ].

Health-related quality of life

HRQoL was assessed using the EORTC QLQ-C30 version 3.0 [ 28 , 29 ]. It consists of 30 questions that encompass multi-item scales such as the Global Health Status/QoL (QL2), 5 functional scales (physical functioning [PF2], role functioning [RF2], emotional functioning [EF], cognitive functioning [CF], and social functioning [SF]), 3 symptoms scale, and 6 single-items. The symptom scales or items include fatigue [FA], nausea and vomiting [NV], pain [PA], dyspnoea [DY], insomnia [SL], appetite loss [AP], constipation [CO], diarrhoea [DI], and financial difficulties [FI].

Responses to each item were scored on a scale of (1) ‘Not at all’, (2) ‘A little’, (3) ‘Quite a bit’, and (4) ‘Very much’ except for QL2, which ranges from (1) ‘Very poor’ to (7) ‘Excellent’. A linear transformation to a ‘0–100’ scale for the score of the items was carried out according to the EORTC QLQ-C30 Scoring Manual [ 30 ]. High scores on the global and functional scales indicate good QoL, while low scores on symptom scales represent a less intense symptom experience. The EORTC QLQ-C30 version 3.0 has good reliability with Cronbach’s α coefficient consistently exceeding 0.70 in most of its multi-item scales [ 28 ].

Data analysis

Statistical analysis was conducted using IBM Statistical Package for Social Science Version 27. A descriptive analysis was done to describe the characteristics of the participants, in which continuous data were presented in means and standard deviations or median with interquartile range (IQR), while categorical data were presented in numbers and percentages in parentheses. The difference between SD and non-SD groups was analysed using Chi-square test or Fisher’s exact test for categorical data and Mann–Whitney test for continuous non-parametric data. Parameters with p < 0.05 and factors deemed significant in other studies such as current age [ 31 – 33 ], marital status [ 32 , 33 ], education [ 31 – 33 ], diagnosis [ 31 , 33 ], and age at treatment [ 33 ] were included as covariates in the binary logistic regression. The results are presented in odds ratio (OR) with a 95% confidence interval (CI). The correlation between SD and QoL was assessed using the Spearman test, followed by linear regression test. Effect size was interpreted based on the Spearman correlation coefficient, where values of 0.1–0.3 indicate a small effect, 0.3–0.5 a medium effect, and greater than 0.5 a large effect [ 34 ]. All statistical tests were two-tailed with an alpha value of 0.05, where a p -value less than 0.05 is considered statistically significant.

Results

Sociodemographic and clinical characteristics of patients

Of 125 patients identified, 89 patients were included in the study (Fig. 1 ). All exclusions were due to predefined criteria, and no eligible patients declined participation, reducing the risk of selection bias. The median age of these patients during survey was 51.0 years (IQR 23). The demographic and underlying clinical characteristics are shown in Table 1 . The patients were predominantly Chinese (55.1%), married (95%), had comorbid (50.6%), received secondary education and below (73%), and menopause (67.4%). Lymphoma (62.9%) was the commonest type of haematological malignancy, followed by acute leukaemia (16.9%), chronic leukaemia (12.4%), and myeloma and others (7.9%). The median age at treatment initiation was 45 years (IQR 23). Most patients (76.4%) had completed their treatment, which predominantly involved chemotherapy, with or without immunotherapy (73%). Additionally, 11.2% underwent radiotherapy, and 15.7% received HSCT in conjunction with their chemotherapy, with or without immunotherapy. Among those who underwent HSCT, 2 (14.3%) received autologous transplants. The remaining 12 (85.7%) underwent allogeneic transplants, of which 8 were myeloablative and 4 were non-myeloablative.

Sexual dysfunction and its associated factors

SD was reported by 82% of respondents, with an overall median FSFI score of 21.6 (IQR 20.0). The SD group had a median FSFI score of 14.1 (IQR 18.2), and each FSFI domain score showed a significant reduction compared to the non-SD group ( p < 0.001) (Table 2 ). Univariate analysis showed factors associated with SD, including current age ( p = 0.026), menopausal status ( p = 0.005), age at treatment initiation ( p = 0.021), HADS-D score ( p = 0.002), and HADS-A score ( p = 0.005) (Table 3 ). SD was significantly higher in patients reporting menopause compared to those without menopause (OR, 5.7; 95% CI, 1.60–20.34; p = 0.007) and in those reported higher HADS-D score (OR, 1.6; 95% CI, 1.14–2.21; p = 0.006).

Sexual function and its impact on quality of life

Patients with SD exhibited significantly lower median scores in QL2 (66.7 [IQR 33.3] vs. 91.7 [IQR 33.3], p = 0.009), RF2 (83.3 [IQR 33.3] vs. 100 [IQR 16.7], p = 0.033), CF (83.3 [IQR 25.0] vs. 100 [IQR 16.7]), and PA (33.3 [IQR 33.3] vs. 0 [IQR 16.7]) (Table 4 ). Weak positive correlations were observed between FSFI score and QL2 (Rs = 0.252, p = 0.018) and CF (Rs = 0.237, p = 0.026), while a moderate positive correlation was found with RF2 (Rs = 0.315, p = 0.003). However, no significant correlation was observed between the FSFI score and any of the QoL symptom scales (see Supplementary Table 1 ). The linear regressions involving SD and HRQoL domains are detailed in Supplementary Table 1 .

Discussion

General discussion

Patients with cancer are experiencing prolonged survival due to advancements in treatment. However, psychosocial issues and sexual functions are often overlooked during follow-up [ 4 ]. It is well reported that sexual problems are not uncommon among cancer survivors, with the incidence of SD ranging from 30 to 80%, particularly high in female patients with cervical and breast cancer [ 13 , 32 , 35 ]. Nevertheless, there is paucity of data concerning patients with haematological cancers, especially in Asia, where discussing such issues remains uncomfortable for patients.

In our study, the prevalence of SDs was 82%, surpassing rates reported in healthy populations and aligning with findings reported in the local gynaecological cancer survivors [ 36 , 37 ]. Unlike patients with gynaecological or breast cancers, who typically experience changes to their sexual organs due to radiation or surgical procedures, our patient cohort did not undergo these alterations. A plausible explanation could be that the more intensive chemotherapy regimen these patients may have undergone, potentially impacting their sexual function. Psychological distress is also a likely contributing factor.

Consistent with other studies, we found a significant association between depression and SD in our patient population. Previous research consistently demonstrates that the sexual function of cancer survivors is influenced by psychological stress, and patients with haematological cancers tend to report higher levels of anxiety and depression [ 38 – 40 ].

In parallel to the findings of this study, diminished sexual functions are reported in older patients and patients with menopausal symptoms [ 41 – 43 ]. This is partly due to the hormonal changes associated with ageing and menopause. A systematic review by Islam et al. (2018) reported a high prevalence of low sexual desire and vulvovaginal atrophy symptoms among postmenopausal women in Asia. The author pointed out that a more robust data on sexual well-being in Asia is needed in view of the high prevalence of SD [ 44 ].

Patients with different types of haematological malignancies typically undergo distinct chemotherapy regimens. These treatments often precede HSCT for which the conditioning therapy ranges from low intensity to myeloablative. Each regimen is associated with varying levels of toxicity, which may contribute to differing degrees of SD. While most previous studies have reported a higher prevalence of SD in females with multiple myeloma or undergoing autologous HSCT [ 31 , 33 , 45 ], one study found no significant difference [ 46 ]. Our findings align with the latter, suggesting that the impact of haematological malignancy type and its treatment on SD may differ across populations. However, the absence of significant differences in our study could also be attributed to the smaller subgroup of patients with multiple myeloma or undergoing autologous HSCT.

Unlike previous studies that did not distinguish between patients undergoing active treatment and those who had completed treatment, our study found no significant difference in SD prevalence between these groups. SD may arise from the disease itself and early treatment complications during active therapy or from psychological impacts and late treatment complications after treatment completion [ 47 , 48 ]. These findings emphasise the importance of adopting a holistic approach to managing SD across all phases of the patients’ journey. Further research is needed to identify effective interventions to address SD, particularly during active treatment. Since SD is a multifaceted problem, it is not easy to determine if it alone significantly impacts QoL. However, several studies have pointed out that SD does have an impact on QoL [ 49 – 51 ]. In this study, global QoL was significantly poorer in those who had SD, consistent with what had previously been reported [ 51 ]. This underscored the importance of addressing sexual wellbeing among cancer patients to institute appropriate diagnosis or support.

A number of studies alluded to the fact that many patients find it difficult to open up and share with their oncologists regarding their sexual problems [ 5 , 52 ]. This is especially prominent in Asian countries, where a population survey demonstrated that up to 45% of those who reported SD did not seek help [ 53 ]. Cultural and religious factors were some of the reasons provided, influencing their help-seeking behaviours. In Malaysia, ‘embarrassment’ was cited by almost all of them for not approaching their doctors for advice [ 36 ].

Strategies for intervention

Health care providers need to be educated to increase their awareness of the high prevalence of SD in patients with haematological cancers. Active screening for SD, especially in those experiencing menopause or depressive symptoms, should be conducted using standardised, self-reported questionnaires as part of their annual routine assessment. This approach can uncover patients’ symptoms and concerns, facilitating direct discussions regarding their sexual function.

As patients experiencing SD also reported significantly lower scores in every sexual function component, a holistic approach is required when addressing their sexual health. They should receive early referrals to appropriate specialists, particularly because certain distressing symptoms may be improved by hormonal replacement therapies, psychological counselling, or sex therapy.

Strength and limitations

There are several limitations in this study. As this is a cross-sectional study, it focused on sexual function, QoL, and psychological well-being at a specific time-point. However, it is important to note that sexual function can decline over time, while HRQoL and HADS scores may vary at different assessment points.

Other limitations pertain to the potential confounding factors were not explored, such as partner factors. Furthermore, important factors such as duration from last treatment, performance status, hormonal replacement therapy, current medications, and details of comorbidities that can affect sexual function were not included in this study.

Although our study included a sizable dataset, participants were quite heterogenous in terms of age, diagnosis, and treatment modalities, which may limit the generalizability of our findings. The absence of data from before diagnosis and treatment limits our ability to determine whether SD was present prior to the cancer diagnosis, resulted from the malignancy itself, or was caused by treatment. This gap introduces uncertainty into prevalence estimates and complicates causal interpretations. Future studies should explore pre-diagnosis data and include assessments conducted before treatment to clarify how SD develops over time.

However, this is one of the few studies that specifically study SD among female patients with haematological cancers in Asia. Beyond examining sociodemographic and clinical aspects, it delves into the psychological domain and explores the correlation between SD with HRQoL, providing valuable insights into the sexual well-being of these patients.

Conclusion

This study highlighted the high prevalence of SD among female patients with haematological malignancies. The presence of SD significantly impaired their HRQoL. These findings emphasise the importance of early screening and intervention. Open discussions between healthcare professionals and patients are essential for timely identification and management of SD across the treatment trajectory.

Supplementary Information

Below is the link to the electronic supplementary material.

(DOCX 28.0KB) Supplementary Table 1 : Spearman correlation and linear regression between FSFI score and HRQoL

Acknowledgements

We would like to express our gratitude to all respondents who had participated in the study. We also thank Sumaiyah Mat for her contribution to statistical analysis.

Author contribution

Gin-Gin Gan, Diana-Leh Ching Ng, Jesinda Pauline Kerishnan, and Chong-Guan Ng had contributed substantially to this study, which includes: Substantial contributions to concept and design, data acquisition, or data analysis interpretation; drafting the article or critically revising it for important intellectual content; preparing figures and tables; reviewed the manuscript and final approval of the version to be published; and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy and integrity of the work are appropriately investigated and resolved.

Funding

Open access funding provided by The Ministry of Higher Education Malaysia and Universiti Malaya. The study received funding from Universiti Malaysia Sarawak specifically for covering the Article Processing Charges. No additional funding was received from any other source.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval

Ethical approval for this study was obtained from the Medical Ethic Committee of the University Malaya Medical Centre with Ethics No: 1024.3. All the methods in this study were performed in line with the principles of the Declaration of Helsinki.

Consent to participate

Written informed consent was obtained from all the participants in this study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Footnotes

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Gin-Gin Gan, Email: gangg@ummc.edu.my.

Diana-Leh-Ching Ng, Email: nlcdiana@unimas.my.

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Associated Data

Supplementary Materials

(DOCX 28.0KB) Supplementary Table 1 : Spearman correlation and linear regression between FSFI score and HRQoL

Data Availability Statement

No datasets were generated or analysed during the current study.