Exploring sexual health and function among Malaysian patients with advanced cancer: insights from the EORTC QLQ SH-22 questionnaire

Abstract

Purpose

Sexual health is an essential yet often overlooked component of quality of life in oncological care. This study aimed to explore the sexual health experiences of Malaysian patients with advanced cancer, utilizing a culturally adapted and validated tool to guide gender-sensitive, contextually relevant supportive care interventions.

Methods

Patients diagnosed with advanced solid-organ cancers were recruited from a quaternary healthcare facility in Malaysia. The study employed the validated EORTC QLQ SH-22 (EORTC Quality of Life Questionnaire Sexual Health 22), the 6-item Female Sexual Function Index (FSFI-6), alongside single-item queries regarding self-esteem and life and relationship satisfaction. Correlational analyses were conducted to investigate the relationships among gender, performance status, and sexual functioning.

Results

Of the 120 participants, the average age was 49.1 years (SD = 11.4); 63.3% were female, and 82.5% had good performance status. 51.6% reported recent sexual activity. Improved sexual functioning was linked to sexual satisfaction, perceived importance of sex, and reduced symptoms such as vaginal dryness (r = −0.43, p < 0.01) in women and erectile confidence in men (r = 0.51, p < 0.01). Male gender was associated with perceived importance of sex (p = 0.005, d = 0.54) and less sexual pain (p < 0.001, d = 0.87). Lower performance status correlated with increased fatigue-related sexual dysfunction (p = 0.010) and concerns about incontinence (p = 0.013).

Conclusions

Sexual health interventions for advanced cancer patients should consider gender-specific and cultural factors. Future research should focus on longitudinal trends and intervention strategies tailored to diverse cultural contexts.

Introduction

Sexual health, defined by the World Health Organization, encompasses physical, emotional, mental, and social well-being related to sexuality, beyond mere absence of dysfunction [1]. This framework highlights the multidimensional nature of sexual health. A cancer diagnosis and treatment can negatively impact these areas. Estimates show that over 90% of cancer patients experience sexual dysfunction, including decreased libido, altered sexual satisfaction, and difficulties with arousal [2, 3].

Despite the significance of sexual health for well-being and high sexual dysfunction rates in cancer patients, communication about it remains low, especially among advanced cancer patients [4, 5]. Healthcare professionals are less likely to discuss sexual health with those on life-prolonging and palliative treatments than with those receiving curative care [6]. Nevertheless, advanced cancer patients seek intimacy and support from healthcare providers regarding their sexual issues [4].

Key barriers hinder healthcare professionals from addressing sexual health issues in cancer patients, including insufficient training, time constraints, personal discomfort, and beliefs about patient discomfort discussing such topics [6, 7]. While professionals acknowledge the importance of supporting cancer patients’ sexual health, conversations are inconsistent and often focus on physical symptoms such as libido, lubrication, and painful intercourse [7]. Furthermore, inconsistencies in these conversations may arise from patient-related factors. Discussions on how cancer treatment affects sexual function largely favor male patients, with reported rates of 64% for men versus 28% for women [8]. This gap may reflect women’s lower interest in sexual intimacy or a greater sense of shame surrounding sexual discussions [4].

Performance status relates to sexual health [9, 10]. It is assessed using the Eastern Cooperative Oncology Group (ECOG) scale, in which lower scores indicate better physical function. Patients with lower scores report higher sexual satisfaction and more significant treatment effects on sexual activity and libido compared to those with higher scores. Sexual dysfunction is more common in gynecological, breast, and prostate cancers due to the treatment’s direct effects on sexual organs [11].

The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Sexual Health Questionnaire (EORTC QLQ SH-22) provides a comprehensive framework for assessing sexual health across physical, emotional, and relational domains. While its effectiveness has been confirmed in Western populations and more recently in patients undergoing palliative oncological treatment, research on its relevance in Asian populations remains limited [9, 12].

This study examines how the EORTC QLQ SH-22 measures sexual health in advanced cancer patients in Malaysia. Cultural and religious norms in this Southeast Asian country significantly influence discussions about sexual health [13]. This limitation on sexual discourse correlates with reduced desire [14] and also impacts the clinical environment, making it challenging for patients and healthcare providers to discuss sexual health openly [15].

Since the EORTC QLQ SH-22 has not been validated in Malaysia, we explored its correlations with the Female Sexual Function Index and factors positively associated with sexual health: self-esteem, life satisfaction, and relationship satisfaction [16–18]. A secondary goal was to evaluate how gender, performance status, and cancer type influence sexual health. Understanding these differences can help customize interventions to address patients’ unique needs, ensuring that sexual health evaluations and support strategies align with various cancer types and functional statuses.

Methods

Recruitment

This research is part of a larger investigation into sexual health among patients with advanced cancer and their partners. This cross-sectional, exploratory, correlational study aimed to describe sexual health experiences and to examine associations between demographic and clinical characteristics and sexual health outcomes among Malaysian patients with advanced cancer. We analyzed data from a cross-sectional survey conducted between 1 March 2023 and 31 March 2024 at a private quaternary hospital in Malaysia.

Participants were recruited from an oncology outpatient clinic during routine visits. Trained staff approached eligible patients in person. Inclusion criteria were stage III or IV solid-organ cancer, age 18 years or older, Malaysian citizenship, having a sexual partner, English proficiency, and mental competence to complete the questionnaires. Exclusion criteria included severe cognitive impairment, medical instability, and an estimated life expectancy of less than 3 months. The study focused on patients with sufficient functional capacity to complete self-administered questionnaires, enabling meaningful assessment of sexual health experiences, though this may have limited the inclusion of patients with more advanced functional decline.

Ethics

Ethical approval was granted by the institutional independent research and ethics committee on 13 December 2022 (reference number 022/2022/IND/FR). The study was conducted in accordance with the ethical principles of the Declaration of Helsinki.

Informed consent

Participants provided written consent and completed the study voluntarily without receiving any remuneration. During data collection, efforts were made to ensure that participants had sufficient privacy, and trained researchers were available to address any discomfort or concerns. A clinical psychologist review was also available if needed.

Data collection

The EORTC QLQ SH-22 is an internationally validated instrument that measures the sexual health of patients with cancer [12]. The present study was not intended to validate the instrument but to apply it to a Malaysian population with advanced cancer. The tool assesses sexual health, including functional areas (sexual satisfaction, sexual activity, libido, and partner relationship) and symptom domains (sexual pain, vaginal dryness, erectile function, fatigue, and treatment impact). The instrument’s multidimensional design enables assessment of the physical, emotional, and relational aspects of sexual well-being, aligning with the objectives of the present study. Higher scores indicate more severe symptoms or dysfunction. All items are rated on a scale from 1 (“not at all”) to 4 (“very much”). The scales are transformed to a 0–100 scale without reverse scoring, as reported by Schmalz et al. [9].

The 6-item Female Sexual Function Index (FSFI-6) is a brief measure of sexual function that captures information regarding sexual desire, arousal, lubrication, pain, satisfaction, and orgasm during the previous four weeks [18]. The items for desire and satisfaction are rated on a scale from 1 (“very low or none at all” or “very dissatisfied”) to 5 (“very high” or “very satisfied”), whereas all other items are rated on a scale from 0 (“no sexual activity” or “no partnered sex”) to 5 (“very high” or “almost always or always”). We adapted the lubrication item to include erection (“how often did you become lubricated/wet or erect during partnered sexual activity or intercourse”) [19]. In our study questionnaire, sexual activity referred to sexual experiences occurring during the preceding four weeks and encompassed broader aspects of intimacy and partnered sexual interaction.

Additionally, single-item measures rated on a scale from 1 (“strongly disagree”) to 7 (“strongly agree”) were adapted to assess self-esteem (“I have high self-esteem”), life satisfaction (“All things considered, I am satisfied with my life as a whole”), and relationship satisfaction (“I am satisfied with my relationship with my partner/husband/wife”) [20–22]. Using the same 7-point Likert scale, participants also reported the degree to which they experienced stress related to sexual issues during the previous 4 weeks.

Variables relating to sociodemographic information and medical history were recorded, including age, gender, ethnicity, education level, occupation, religion, cancer status, comorbid medical conditions, and past or current psychological or psychiatric history, as well as cancer treatment. Gender was documented via self-report (male, female, non-binary, or others), consistent with the study questionnaire and clinical records. Data on relationship status and duration, cohabitation status, frequency of sexual activity, and frequency of non-sexual physical intimacy were also collected.

Statistical analysis

All statistical analyses were conducted using SPSS version 25 (α = 0.05). Descriptive statistics were computed for the overall sample and separately for men and women. Pearson correlation analyses were performed separately for men and women to examine the associations between sexual health, self-esteem, life satisfaction, relationship satisfaction, and recent stress related to sex.

Differences in sexual health were assessed using independent t-tests and analyses of variance (ANOVAs) according to gender, cancer type, and performance status. Cancer types were categorized as breast cancer, colorectal cancer, prostate and other genitourinary cancers, head, neck, and lung cancers, and others. ECOG scores of 0 and 1 were classified as good performance status, whereas an ECOG score of 2 and above was classified as poor performance status [9].

Multiple linear regression analysis was performed to determine whether the association between cancer type and sexual pain remained significant after adjustment for gender. Effect sizes (Cohen’s d) were categorized as small (0.2), moderate (0.5), and large (0.8) to improve clinical interpretation. Given the exploratory nature of the study, no formal adjustment for multiple comparisons was performed.

Results

Participant characteristics

Data from 120 of 130 recruited participants were included in the analysis; 10 participants were excluded due to incomplete data or withdrawal from the study. The mean age was 49.1 years (standard deviation (SD) = 11.4). Most participants identified as female (63.3%), ethnically Chinese (70.0%), and Buddhist (50.0%), had tertiary education (46.7%), and were employed or self-employed (68.3%). Tables 1 and 2 summarize the participants’ demographic and clinical characteristics. The most common cancer diagnosis was breast cancer (28.3%), followed by gastrointestinal malignancies (26.7%) and lung cancer (13.3%). The majority of participants reported good functional status (ECOG 0 to 1) (82.5%), were receiving cancer treatment at the time of the study (81.7%), and had not received psychological and psychiatric intervention (92.5%). Additionally, most were married (95.8%), living with their partner (95.0%), and had a relationship duration of over 20 years (57.5%). Up to 51.6% reported having engaged in sexual activity in the past 4 weeks.

Table 1.

Participant sociodemographic characteristics and medical history

Characteristics	Overall (N = 120)		Men (N = 44)		Women (N = 76)
	n	%	n	%	n	%
Age (years) M, SD	49.1	11.4 (SD)	52.6	13.8 (SD)	47.1	9.3 (SD)
Ethnicity
Chinese	84	70.0	32	72.7	52	68.4
Malay	27	22.5	8	18.2	19	25.0
Indian	8	6.7	3	6.8	5	6.6
Others	1	0.8	1	2.3	0	0.0
Education level
Primary school	1	0.8	0	0.0	1	1.3
Secondary school	27	22.5	8	18.2	19	25.0
Diploma	29	24.2	14	31.8	15	19.7
University	56	46.7	20	45.5	36	47.4
Vocational training	1	0.8	0	0.0	1	1.3
Others	6	5.0	2	4.5	4	5.3
Occupation
Managers	22	18.3	12	27.3	10	13.2
Professionals	33	27.5	9	20.5	24	31.5
Clerical support	7	5.8	0	0.0	7	9.2
Service and sales	14	11.7	8	19.2	6	7.9
Not working/retired	37	30.8	11	25.0	26	34.2
Business owner/self-employed	6	5.0	4	9.1	2	2.6
Prefer not to say	1	0.8	0	0.0	1	1.3
Religion
Christian	15	12.5	5	22.4	10	13.2
Hindu	5	4.2	2	4.5	3	3.9
Muslim	27	22.5	8	18.2	19	25.0
Buddhist	60	50.0	24	54.5	36	47.4
Catholic	4	3.3	0	0.0	4	5.3
Taoist	5	4.2	3	6.8	2	2.6
Others	4	3.3	2	4.5	2	2.6
Medical/surgical history
Hypertension	16	13.3	9	20.5	7	9.2
Diabetes	5	4.2	2	4.5	3	3.9
Heart disease	4	3.3	4	9.1	0	0.0
Kidney disease	3	2.5	3	6.8	0	0.0
Liver disease	3	2.5	1	2.3	2	2.6
Lung disease	11	9.2	5	11.4	6	7.9
Others*	38	31.7
Received psychological/psychiatric treatment
Yes, in the past	5	4.2	1	2.3	4	5.3
Yes, currently	4	3.3	1	2.3	3	3.9
No	111	92.5	42	95.5	69	90.8

*Other medical or surgical histories include caesarian section, hernia, cataract, high cholesterol, and spine operation

Table 2.

Participant cancer history and relationship and sexual health characteristics

Characteristics	Overall (N = 120)		Men (N = 44)		Women (N = 76)
	n	%	n	%	n	%
Cancer type
Breast	33	19.3	0	0	33	43.4
Gynecologic	12	7	0	0	12	15.8
Prostate	4	2.3	4	9.1	0	0
Other genitourinary	6	3.5	5	11.4	1	1.3
Head and neck	14	8.2	10	22.7	4	5.3
Colorectal	18	10.5	9	20.5	9	11.8
Lung	16	9.4	8	18.2	8	10.5
Brain	1	0.6	1	2.3	0	0
Esophageal	8	4.7	5	11.4	3	3.9
Hematologic	1	0.6	0	0	1	1.3
Others*	7	4.1	2	4.5	5	6.6
Still receiving cancer treatment
Yes	98	81.7	35	79.5	63	82.9
No	22	18.3	9	20.5	13	17.1
ECOG Score
0	34	28.3	18	40.9	16	21.0
1	65	54.2	21	47.7	44	57.9
2	21	17.5	5	11.4	16	21.1
Marital status
Married	115	95.8	41	93.2	74	97.3
Unmarried	5	4.2	3	6.8	2	2.7
Relationship duration
1–5 years	9	7.5	3	6.8	6	7.9
6–10 years	11	9.2	5	11.4	6	7.9
11–15 years	15	12.5	5	11.4	10	13.1
16–20 years	16	13.3	4	9.1	12	15.8
> 20 years	69	57.5	27	61.4	42	55.3
Living with partner
Yes	114	95.0	42	95.5	72	94.7
No	6	5.0	2	4.5	4	5.3
Sexual activity in the past 4 weeks
None	58	48.3	19	43.2	39	51.3
Once	20	16.7	10	22.7	10	13.2
2–3 times	15	1.5	5	11.4	10	13.2
4 times	18	15.0	6	13.6	12	15.9
8–12 times	9	7.5	4	9.1	5	6.5
Non-sexual physical intimacy in the past 4 weeks
None	19	15.8	7	15.9	12	15.8
Once	7	5.8	4	9.1	3	3.9
2–3 times	11	9.2	5	11.4	6	7.9
4 times	18	15.0	7	15.9	11	14.5
8–12 times	15	12.5	6	13.6	9	11.8
> 12 times (almost every day to a few times a day)	50	41.7	15	34.1	35	46.1

*Other cancer types include liver, thyroid, synovial sarcoma, angiosarcoma, and paraganglioma

Correlates of sexual health

The results of the correlational analyses, categorized by gender, are summarized in Table 3. Among women, better sexual functioning was associated with higher perceived importance of sex (r = 0.60), less interference of treatment with sex (r = −0.35), less vaginal dryness (r = −0.43), more sexual satisfaction (r = 0.61), and less sexual pain (r = −0.33) (ps < 0.01). Among men, better sexual functioning was associated with higher perceived importance of sex (r = 0.46), higher confidence in obtaining and maintaining an erection (r = 0.51), more sexual satisfaction, and less interference of treatment with sex (r = −0.49) (ps < 0.01). No significant correlations with sexual functioning were found for decreased libido, worries about incontinence, fatigue, communication with professionals, partnership, and body image. Among women, only sexual satisfaction was positively associated with self-esteem (r = 0.24, p < 0.05). None of the sexual health variables captured by the EORTC SH-22 were significantly associated with self-esteem among men. Sexual function was not associated with self-esteem. Life satisfaction was negatively associated with worries about incontinence among men (r = −0.31) and positively related to sexual satisfaction among women (r = 0.26) (ps < 0.05). Sexual function was positively associated with satisfaction with life among women (r = 0.22, p < 0.05).

Table 3.

Correlations between sexual health dimensions, sexual function, self-esteem, life satisfaction, relationship satisfaction, and stress related to sex

Variables	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	Men M (SD)
1. Importance of sexual activity		.06	−.21	.12	−.17	.10	.10	.21	.03	−	.15	.25	.46**	.23	.13	−.18	.11	70.5 (33.9)
2. Decreased libido	.09		.17	.09	.21	.13	−.06	−.33*	−.00	−	−.33*	.14	−.22	.09	−.06	−.09	.16	53.0 (38.9)
3. Worries concerning incontinence	.14	.02		.35*	.20	−.07	.04	−.21	.20	−	−.27	.01	−.11	−.27	−.31*	−.11	−.02	26.5 (33.4)
4. Fatigue effect on sex life	.03	.31**	.30**		.32	−.11	.26	−.01	.37*	−	−.04	.19	.08	.11	.10	.01	0.16	49.2 (37.0)
5. Treatment effect on sexual activity	−.28*	.30*	−.07	.48**		.07	.23	−.22	.39*	−	−.54**	.09	−.49**	.13	.24	.06	.45**	70.6 (32.6)
6. Communication with professionals	.25*	.08	.14	.12	.09		.09	−.06	.07	−	−.11	.27	−.08	.06	.09	.02	.31*	4.7 (18.7)
7. Insecurity with partner	−.02	−.06	.20	.22	.25	.39**		−.14	.37*	−	−.07	.06	.03	.10	.22	.21	.35*	37.7 (36.5)
8. Confidence in erection	−	−	−	−	−	−	−		.07	−	.58**	.13	.51**	.15	.10	.02	−.28	51.2 (36.6)
9. Body image	−.03	−.09	.14	.17	.14	.17	.40**	−		−	−.29	.22	.00	.15	.09	−.15	.36*	43.9 (41.2)
10. Vaginal dryness	−.24	.32	.21	.18	.36*	.33*	.27	−	.37*		−	−	−	−	−	−	−	−
11. Sexual satisfaction	.49**	−.10	−.01	−.28*	−.29*	−.04	−.24	−	−.24*	−.51**		.01	.68**	.09	.11	.22	−.50**	57.6 (23.5)
12. Sexual pain	−.14	.27*	.19	.39**	.62**	.23	.34**	−	.32**	.76**	−.39**		.01	−.01	−.07	−.26	.10	13.2 (23.7)
13. Sexual function (FSFI)	.60**	.07	−.07	−.05	−.35**	−.11	−.24	−	−.10	−.43**	.61**	−.33**		.13	.09	−.05	−.17	14.2 (8.9)
14. Self-esteem	−.02	−.00	.03	−.20	−.12	.05	.18	−	.10	−.04	.24*	−.04	.08		.76**	.18	−.04	5.4 (1.2)
15. Life satisfaction	.10	.16	−.15	−.20	−.15	.03	.08	−	−.13	.06	.26*	−.11	.22*	.73**		.26	−.01	5.7 (1.3)
16. Relationship satisfaction	.34**	.02	−.13	.04	.06	−.12	−.16	−	−.16	−.09	.41**	.02	.33**	.21*	.16		−.08	6.1 (1.1)
17. Stress related to sex	0.11	0.18	.37**	.12	.09	.30**	.35**	−	0.09	.39*	−.00	.18	−.07	−.08	−.11	−.09		3.0 (1.5)
Women M (SD)	52.4 (33.0)	46.8 (34.9)	28.1 (35.7)	44.6 (35.4)	62.5 (34.9)	4.4 (16.6)	32.8 (34.6)	−	39.0 (37.5)	37.7 (38.1)	54.8 (22.0)	41.4 (36.6)	12.2 (8.1)	5.4 (1.2)	5.7 (1.3)	5.8 (1.2)	2.8 (1.7)

*p < 0.05, **p < 0.01, ***p < 0.001. Coefficients for men are above the diagonal, while those for women are below

Relationship satisfaction was only positively associated with sexual satisfaction (r = 0.41) and higher perceived importance of sex (r = 0.34) among women (ps < 0.01). No sexual health variables were associated with relationship satisfaction among men. Sexual function was positively associated with relationship satisfaction among women (r = 0.33, p < 0.01), but none of these associations were significant among men.

Overall, more stress related to sex was correlated with more communication with health professionals about sexual issues (rs = 0.30–0.31) and more insecurity about one’s ability to satisfy one’s partner (rs = 0.35) (ps < 0.05). More sex-related stress was linked to more interference of treatment with sex (r = 0.45), poorer body image (feeling less masculine, r = 0.36), and less sexual satisfaction among men (r = −0.50) (ps < 0.05). Women who experienced more vaginal dryness (r = 0.39) and worried more about incontinence (r = 0.37) reported more stress related to sex (ps < 0.05). Sexual functioning was not significantly associated with sex-related stress among men and women.

Differences according to gender and performance status

As shown in Table 4, having an active sex life was more important for men (M = 70.5, SD = 33.9) than women (M = 52.4, SD = 33.0, p = 0.005, d = 0.54). Less sexual pain during and after sex was reported by men (M = 13.2, SD = 23.7) than women (M = 41.4, SD = 36.6, p < 0.001, d = 0.87). No other aspects of sexual health varied significantly according to gender (ps > 0.10). As shown in Table 5, patients with poor performance status reported having more effect of fatigue on their sex life (M = 65.0, SD = 36.6 vs. M = 42.4, SD = 34.7, p = 0.010, d = 0.65) and more worries concerning incontinence (M = 44.4, SD = 38.5 vs. M = 23.9, SD = 33.01 p = 0.013, d = 0.60) than patients with good performance status. No other differences in performance status were found.

Table 4.

Results from t-tests comparing sexual health scores among men and women

	Overall (N = 120)		Men (N = 44)		Women (N = 76)
	n	M (SD)	n	M (SD)	n	M (SD)	t	p	d
Importance of sexual activity	119	59.1(34.3)	44	70.5 (33.9)	75	52.4 (33.0)	2.85	0.005	0.54
Decreased libido	118	49.2 (36.4)	44	53.0 (38.9)	74	46.8 (34.9)	0.89	0.374
Worries concerning incontinence	120	27.5 (34.8)	44	26.5 (33.4)	76	28.1 (35.7)	−0.24	0.814
Fatigue effect on sex life	116	46.3 (35.9)	42	49.2 (37.0)	74	44.6 (35.5)	0.66	0.509
Treatment effect on sexual activity	98	65.3 (34.2)	34	70.6 (32.6)	64	62.5 (34.9)	1.12	0.267
Communication with professionals	119	95.5 (17.3)	43	95.3 (18.7)	76	95.6 (16.6)	0.08	0.936
Insecurity with partner	105	34.6 (35.2)	38	37.7 (36.5)	67	32.8 (34.6)	0.68	0.497
Confidence in erection	-	-	43	51.2 (36.6)	-	-	-	-
Body image (male)	-	-	44	43.9 (41.2)	-	-	-	-
Body image (female)	-	-	-	-	76	39.0 (37.5)	-	-
Vaginal dryness	-	-	-	-	38	37.7 (38.1)	-	-
Sexual satisfaction	120	55.8 (22.5)	44	57.6 (23.5)	76	54.8 (22.0)	0.67	0.507
Sexual pain	116	25.9 (28.8)	43	13.2 (23.7)	73	41.4 (36.6)	−4.53	<.001	0.87

Table 5.

Results from t-tests comparing sexual health scores by performance status

	Good performance status		Poor performance status
	n	M (SD)	n	M (SD)	t	p	d
Importance of sexual activity	99	58.6 (34.4)	20	61.7 (34.7)	−0.37	0.716
Decreased libido	99	50.8 (35.4)	19	40.4 (40.9)	1.15	0.251
Worries concerning incontinence	99	23.9 (33.0)	21	44.4 (38.5)	−2.52	0.013	0.60
Fatigue effect on sex life	96	42.4 (34.7)	20	65.0 (36.6)	−2.63	0.010	0.65
Treatment effect on sexual activity	83	64.7 (33.1)	15	68.9 (40.8)	−0.44	0.661
Communication with professionals	99	4.4 (16.3)	20	5.0 (22.4)	−0.15	0.884
Insecurity with partner	88	33.0 (33.3)	17	43.2 (43.7)	−1.09	0.277
Confidence in erection	38	53.5 (36.8)	5	33.3 (33.3)	1.16	0.252
Body image (male)	39	41.9 (39.5)	5	60.0 (54.8)	−0.93	0.360
Body image (female)	60	38.3 (37.2)	16	41.7 (39.4)	−0.31	0.754
Vaginal dryness	33	37.4 (38.0)	5	40.0 (43.5)	−0.14	0.888
Sexual satisfaction	99	57.1 (22.7)	21	49.7 (21.2)	1.38	0.169
Sexual pain	95	28.1 (33.9)	21	43.9 (38.2)	−1.90	0.061

Good performance status is ECOG = 0 and 1, while moderate to poor performance status is ECOG = 2. Results remained unchanged when age and gender were included in the analyses as control variables

Differences according to cancer type

As shown in Table 6, only sexual pain differed between different types of cancer. Participants with breast cancer (M = 46.2, SD = 32.9, n = 32) and colorectal cancer (M = 43.8, SD = 42.8, n = 18) reported significantly more sexual pain than those with cancers of the head and neck (M = 15.0, SD = 26.6, n = 30, ps = 0.003 and 0.032, respectively). Participants with breast cancer also reported more sexual pain than those with other forms of cancer (M = 16.0, SD = 22.8, n = 16, p = 0.027). Given that sexual pain also varied according to gender, we performed a multiple linear regression analysis to test whether the differences according to cancer type remained after controlling for gender. The differences between types of cancer became non-significant when gender was included in the model (ps > 0.05).

Table 6.

Results from one-way ANOVA comparing sexual health scores by cancer type (breast, colorectal, prostate and other genitourinary, head and neck, lung, and others)

	F	df	p	Partial eta squared
Importance of sexual activity	0.51	4, 114	0.732
Decreased libido	0.14	4, 113	0.968
Worries concerning incontinence	0.35	4, 115	0.845
Fatigue effect on sex life	0.58	4, 111	0.677
Treatment effect on sexual activity	1.08	4, 93	0.373
Communication with professionals*	1.09	4, 62.2	0.369
Insecurity with partner	0.55	4, 100	0.703
Confidence in erection	1.33	3, 39	0.278
Body image (male)	0.32	3, 40	0.809
Body image (female)	0.74	4, 71	0.571
Vaginal dryness*	0.37	4, 12.9	0.825
Sexual satisfaction	0.17	4, 115	0.954
Sexual pain*	4.84	4, 78.3	0.002	.153

*Brown-Forsythe test results were reported due to violation of equality of variance assumptions indicated by significant Levene’s test, p <.05

Discussion

As sexual health remains an understudied aspect of supportive oncology care in Southeast Asia, these findings contribute important evidence regarding the experiences of patients living with advanced cancer within a multicultural and religiously diverse society. This instrument facilitated the collection of data that reflects local cultural and linguistic particularities while conforming to international research standards. The sample primarily consisted of educated Malaysian Chinese women in stable, long-term partnerships who demonstrated relatively good functional status.

Notably, more than half of the participants reported recent sexual activity, suggesting that sexuality remains a significant aspect of life even during serious illness. This observation contrasts with the findings of Bond et al., which indicated that nearly 60% of highly educated men in marital or cohabiting relationships facing advanced cancer had refrained from sexual activity in the preceding month, despite 62% expressing a yearning for intimacy [4]. Furthermore, Yan et al. revealed that fewer than one-third of urban Chinese survivors of breast cancer had been sexually active in the past year, and they often cited concerns that engaging in sexual activity could hinder recovery or lead to reinfection [23]. These discrepancies suggest that sexual attitudes and behaviors may be influenced not only by disease status but also by cultural, relational, and healthcare factors. In the Malaysian context, stable long-term partnerships may facilitate the maintenance of intimacy despite advanced illness. Understanding these influences is important when developing culturally appropriate supportive care interventions.

Better sexual functioning was associated with lower vaginal dryness among women, greater erectile confidence among men, and a higher perceived importance of sexuality in both genders. These findings are consistent with previous studies demonstrating gender-related differences in sexual health among patients with cancer receiving supportive and palliative care [9, 24]. Men in our study placed greater importance on maintaining an active sex life, whereas women reported higher levels of sexual pain, findings that have also been reported in other cancer populations [9, 24]. Furthermore, patients with poorer performance status experienced a greater impact of fatigue on sexual life and increased concerns regarding incontinence, supporting evidence that physical functioning is closely linked to sexual well-being and quality of life among patients with advanced cancer [9]. However, unlike some previous studies, we did not observe significant gender differences in partner insecurity, relationship satisfaction, libido, or body image, suggesting that cultural, interpersonal, or disease-related factors may influence how these domains are experienced within the Malaysian context.

We found notable gender disparities in the emotional and physical dimensions of sexual health. Female participants linked their sexual functioning to emotional intimacy and body image, aligning with Reese et al., who noted that negative changes in body image and emotional connections were critical to women’s sexual well-being following a cancer diagnosis [25]. A recent clinical review further highlighted that body image concerns, emotional distress, and sexual dysfunction are common among female cancer survivors and may adversely affect intimacy and sexual well-being [26]. In contrast, men in this study emphasized physical sexual function and faced fewer pain-related barriers, consistent with Kim et al., who found that men prioritize sexual performance and experience fewer pain-related sexual difficulties [24].

Patients with breast and colorectal cancers experience more sexual pain than those with head and neck cancers. However, after adjusting for gender, this difference lost significance, indicating a greater impact of gender—its physiological and sociocultural aspects—than cancer type alone. Rodrigues-Machado et al. emphasized that female breast cancer survivors often face ongoing sexual dysfunction due to menopausal symptoms, psychological distress, and body image concerns [27]. Although all participants had advanced cancer, disease- and treatment-related factors may have influenced sexual functioning. Patients with poorer performance status reported greater fatigue-related sexual dysfunction and concerns about incontinence, suggesting that functional decline may negatively affect intimacy and sexual well-being. Participants with breast and colorectal cancers reported greater sexual pain, although these differences were no longer significant after adjustment for gender. Cancer treatments such as surgery, chemotherapy, radiotherapy, and endocrine therapy may contribute to sexual difficulties through their effects on body image, fatigue, menopausal symptoms, vaginal dryness, erectile function, and overall physical functioning. Further research is needed to examine the independent contributions of disease site, treatment modality, and symptom burden to sexual health outcomes among patients with advanced cancer. These findings underscore the need for gender-sensitive sexual health care post-treatment to address these challenges.

Our research indicates that sexual distress is influenced by various factors for men and women. Men struggled with concerns about body image, anxiety over meeting their partners’ needs, and inadequate communication with healthcare providers. These findings are consistent with previous research demonstrating that men place greater emphasis on sexual performance and may experience substantial distress when cancer affects sexual functioning and intimacy [24]. In contrast, women experienced distress related to vaginal dryness, incontinence, and physical discomfort. These differing sources of distress highlight the importance of creating nonjudgmental environments and providing customized psychosocial support to address patients’ specific needs and reduce sexual distress. Clinically, these findings support the use of established communication frameworks to facilitate conversations about sexuality, while enabling individualized symptom management strategies, including interventions for vaginal dryness, erectile difficulties, body image concerns, and relationship distress.

In Malaysia, cultural norms such as modesty, religiosity, and traditional gender roles may hinder open discussion of sexual health, particularly among older adults and women, contributing to underreporting and unmet needs. Sexuality is often regarded as a private matter, and traditional expectations surrounding marriage and family roles may shape how patients perceive sexual concerns, the importance they place on sexual well-being, and their willingness to disclose difficulties or seek professional support. Similarly, healthcare professionals may feel uncomfortable initiating discussions about sexuality because of sociocultural sensitivities and limited training, creating additional barriers to addressing these needs in routine oncology practice.

These factors may help explain the sustained sexual activity and relatively limited gender differences observed in our cohort compared with some Western populations, highlighting the importance of culturally sensitive communication and supportive care interventions. [13, 15, 28–30]

Implications for practice

Findings from our study contribute to the understanding of issues regarding sexual function in advanced cancer patients and the impact of gender, performance status, and cancer type on sexual health. Routine assessment of sexual health should be considered as part of comprehensive oncology and palliative care services. Healthcare professionals may benefit from additional training to improve confidence in discussing sexual concerns and providing appropriate referrals when needed. Integrating sexual health assessment into routine practice may facilitate earlier identification of unmet needs and promote more holistic, person-centered care for patients with advanced cancer.

A simple sexual health screening question can be incorporated into routine oncology and palliative care consultations, such as asking whether cancer or its treatment has affected intimacy, sexual functioning, or sexual well-being. Patients reporting concerns can then undergo further assessment using validated instruments such as the EORTC QLQ SH-22, facilitating earlier identification of unmet needs and timely intervention while promoting open discussions about sexuality in routine cancer care [6, 7, 31]. Additionally, gender-sensitive and multidisciplinary approaches to sexual health are important. Women may benefit from management of vaginal symptoms, gynecological assessment, body image support, and couple-based interventions to enhance emotional intimacy, whereas men may benefit from interventions addressing erectile confidence, body image concerns, masculinity-related issues, and communication with partners. Physical symptoms such as fatigue and incontinence should be recognized as integral components of sexual well-being rather than isolated clinical problems. Establishing clear referral pathways to gynecology, urology, psycho-oncology, counseling, and palliative care services may facilitate comprehensive and culturally sensitive management of sexual health concerns among patients with advanced cancer [6, 7, 29, 31].

Research shows that conversations about sexual health are seldom held in oncology care, primarily due to provider discomfort, inadequate training, and cultural stigma [31]. This trend is evident in Malaysia as well. A qualitative study conducted in two tertiary hospitals in North-East Malaysia explored healthcare providers’ perspectives on addressing female sexual dysfunction in breast cancer patients. The findings identified significant challenges, including a lack of knowledge, feelings of embarrassment when discussing sexual topics, and sociocultural taboos surrounding sexuality [29]. Providers often prioritized disease management over comprehensive care, citing time constraints and devaluing sexual health in clinical practice.

A study of Malaysian medical students found that many felt ill-equipped to discuss sexual health with patients, pointing to shortcomings in their medical training [30]. These results underscore the pressing need for culturally sensitive education, enhanced provider training, and systemic changes to better incorporate sexual health discussions into oncology and palliative care in Malaysia. Additionally, using tools such as the EORTC QLQ SH-22 in assessments and health records may help normalize sexual health discussions in clinical settings. Referrals may involve gynecology for vaginal symptoms or menopausal concerns, urology for erectile dysfunction, psycho-oncology or counseling services for sexual distress and relationship difficulties, and palliative care services for holistic symptom management. A multidisciplinary approach involving oncologists, palliative care physicians, nurses, psychologists, rehabilitation specialists, and sexual health professionals may further improve the identification and management of sexual health concerns throughout the cancer trajectory [6, 7, 29, 31].

Limitations

This study has several limitations. First, the cross-sectional design restricts causal inferences, as the associations do not indicate temporal or directional relationships. Second, while the sample was ethnically diverse, the higher number of female and Chinese participants may limit the applicability of the findings to broader populations. The predominance of participants with good performance status may also have influenced the findings, as individuals with greater functional impairment may experience different sexual health concerns and supportive care needs. In addition, the independent effects of treatment modality, symptom burden, and specific disease sites were not examined and may have influenced sexual health outcomes. Future studies should explore these factors using larger samples and multivariable analyses. The small number of male participants and those with low performance status may also diminish the power of some subgroup analyses. Using self-reports can lead to social desirability bias, especially on sensitive sexual health topics. Participants might downplay concerns about intimacy and partner dynamics. Selection bias may also have occurred because recruitment was conducted at a single private quaternary oncology center and might not represent experiences in rural or public healthcare settings. Patients who were physically well enough to complete the questionnaires, had stable relationships, or felt more comfortable discussing sexual matters may have been overrepresented. Consequently, the findings may not fully reflect the experiences of individuals with poorer functional status, limited social support, or greater reluctance to discuss intimate concerns. The underrepresentation of unmarried and LGBTQIA+ individuals in our study also restricts how broadly the findings can be applied. The lack of partner perspectives limits understanding of relationships, particularly with regard to dyadic coping, intimacy, and relational adjustment in the context of advanced cancer.

Conclusion

This study explored sexual health among patients with advanced cancer. It offers culturally appropriate insights and contributes to a broader understanding of this frequently neglected topic. Our findings support the implementation of structured sexual health assessment as part of routine oncology and palliative care, alongside the development of culturally sensitive supportive care pathways. The observed gender differences support the need for gender-sensitive approaches to the assessment and management of sexual health. Patients with poorer performance status and certain cancer types, particularly breast and colorectal cancers, reported greater sexual discomfort, highlighting the contribution of both physical and psychosocial factors to sexual well-being.

To enhance dignity and quality of life, interventions should adopt holistic approaches that accommodate patients’ diverse sexual needs and identities. Our findings also emphasize the importance of delivering culturally responsive and person-centered supportive care that acknowledges the diverse values, beliefs, and relational needs of patients and their partners. Research and policy should continue to prioritize sexual health as part of supportive cancer care, particularly in culturally diverse settings such as Malaysia. Future research should evaluate the effectiveness of culturally adapted sexual health interventions and counseling models, as well as dyadic (patient-partner) approaches designed to improve sexual well-being, relationship functioning, and quality of life among patients with advanced cancer.

Author contribution

Authorship: HY, PHG, HM, JFVH, and MWL conceptualized and designed the research protocol. QYL and PLW contributed to recruitment, data collection and conducted the preliminary data analysis. HM and PHG examined the data, while HY and PHG drafted the manuscript. Editing and review were conducted by HY, PHG, and JFVH. All of the stated authors reviewed and approved the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Sunway Medical Centre, grant number: SRB/IIR/SMC/F/23/001.

Data availability

The data that support the findings from this study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval

The study was conducted in accordance with the ethical standards outlined in the 1964 Declaration of Helsinki. The Sunway Medical Centre Independent Research Ethics Committee approved this study on 13 December 2022, approval number: 022/2022/IND/FR.

Conflict of interest

The authors declare no competing interests.

Clinical trial number

Not applicable.