This observational cohort study explored the sexual health of cancer patients in oncological treatment with palliative intent in relation to their physical performance status and compared patients with GPS versus PPS.

In our analysis we found significant differences between palliative patients with GPS and PPS in terms of their experience of sexual health. These differences concern their self reported sexual satisfaction, importance of sexual activity, decreased libido, fatigue and treatment effect on sexual activity.

Palliative patients with GPS report a significantly higher level of sexual satisfaction. The multi-item Sexual satisfaction scale of the EORTC-QLQ-SH22 includes various aspects: satisfaction with the level of sexual desire, the ability to reach an orgasm, communication about sexual issues with a partner, level of intimacy, but also sexual activity and sexual enjoyment. All these aspects together reflect a fulfilling sex life. It is remarkable, that a group of patients in a palliative treatment setting reported a similar level of sexual satisfaction as compared to patients undergoing treatment with curative intent [6]. Patients with GPS report significantly more treatment effects on their sexual activity than patients with PPS and correspondingly, decreased libido is reported as a greater issue by them. These results reflect that sexual activity can be seen as a part of physical performance and is therefore expected to correlate with ECOG status.

In this subgroup analysis, the palliative patients with GPS report significantly less fatigue. Fatigue is a very common symptom among oncological patients: 32 to 90% of all patients with advanced cancer experience fatigue [13, 14]. Our results match these assumptions and confirm clinical experience: poor performance status was associated with more fatigue.

One of the results of our investigation stands out: PPS palliative patients place more importance on sexual activity than GPS palliative patients. Though the PPS group of patients suffers significantly from fatigue and loss of libido, sexual activity retains its importance in their lives. These results concur with the results of Wang et al.´s narrative review of the sexual health needs of cancer patients receiving palliative care [4]. The authors conclude that “sexuality and intimacy remain important parts of many people’s lives regardless of their health”, which underlines the importance of addressing sexual health needs in palliative care. Still, sexuality plays a minor role in the care of terminally ill patients, even though a core principle of palliative care is a holistic approach [15]. It is noteworthy that sexual satisfaction decreases with declining ECOG, although physical functioning (such as confidence to get an erection or vaginal dryness) remain stable. One could interpret these results in relation to multiple losses experienced along the treatment trajectory; that in the face of the loss of various physical functions sexuality may accrue special meaning for patients. Or, as Schopenhauer wrote: “It is usually only loss that teaches us about the value of things” (quote from: “Parerga und Paralipomena, Aphorismen zur Lebensweisheit”).

Our decision to divide and compare our sample according to performance status (ECOG 0 and 1 vs ECOG 2 and 3) was primarily informed by the literature which reports a broad consensus, that ECOG performance status has a decisive influence on prognosis and HRQOL, especially in the palliative context [16, 17]. The evidence for the early introduction of specialist palliative care along the cancer trajectory leads to palliative treatment for patients who are still in good status [18, 19, 20], which could be the reason why a large proportion of the patients with palliative oncological therapy considered in this study showed good general congestion. Perhaps most importantly, groundbreaking advances in oncological therapy in the last decade underpinned our decision, for example, implementation of immunotherapy with immune checkpoint-inhibitors, and image-guided therapy. These therapeutic advances in oncology and radiotherapy provide opportunities for second-, third- and fourth-line- treatments for patients in a palliative situation without severe side-effects [21]. Therefore, there are more and more patients with a good performance status undergoing different types of palliative anticancer treatments and specialist palliative symptom management treatments [22]. As QoL is the main therapeutic goal in palliative treatment, it is of central importance to identify factors that may positively impact an individual’s life.

Both patient groups in our study report a very low level of communication with health care professionals about sexual health issues, and patients with GPS reported even lower levels of communication than patients with PPS. This is in line with earlier findings that there is limited communication with cancer patients about sexuality: patients in palliative care settings wish to have discussions concerning their sexual health with health care professionals, but it is well documented that health care professionals are ill equipped to have such discussions [23, 24, 4]. Williams and Addis report major educational needs among health care professionals concerning communication about patients’ sexual problems. If addressed at all in clinical care, it is usually the physical aspects of sexuality that are spoken of, including physical concerns such as erectile function, vaginal dryness or painful intercourse or menopausal changes [25, 26]. Our results support the need for a much broader and more nuanced discussion about sexuality in the curative as well as in the palliative oncological setting. Previously Vitrano et al. showed that even patients with shorter life expectancy considered it important to talk about and face the issue of sexuality with an experienced professional [27]. Patients in their study had not had that opportunity. Patients in our sample also reported low levels of communication about sexual matters. These results underline, that deficiencies in information provision and adequate discussion of sexual health issues in palliative settings are common. If so, then this is unacceptable and against the holistic principle of palliative care. There is an urgent need for palliative patients’ sexual health needs to be identified and addressed. Clinical use of the EORTC QLQ-SH22 could be a first step to identify the wishes and needs of patients and their partners in relation to sexual issues, and facilitate these important conversations with health care professionals.

This study is not a primary analysis, but a secondary analysis of a large oncology patient cohort from the validation study of the EORTC-QLQ-SH22 with different cancer sites. The limited number of patients with large confidence intervals is a drawback of our study. It is possible that covariates (presence or absence of partners or age) could partially explain our findings, in particular because, in contrast to the procedure in the validation study, we did not exclude patients without a sexual partner or patients who were not sexually active from the analysis. In this secondary analyses is was not possible to assess further information on medication and types of comorbidity, which could as well have a great impact on sexual health, as well. Moreover, we are clearly aware of the fact, that the sample may not be representative of the wide diversity of patients in palliative oncological treatment, as recruitment took place in the context of psychometric assessment in the oncological setting. Thus, non-oncology palliative patients and palliative patients in home care may not be represented in our results.