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Abstract
Sexual well-being is often significantly affected by cancer and its treatments. Previous research shows that a patient's sexual well-being is often overlooked in clinical practice.
Objectives The aims of this study were twofold. First, to determine the current practice of healthcare professionals (HCPs) working with cancer and palliative care patients in primary and secondary care settings in relation to sexual well-being. Second, to determine the education requirements of HCPs regarding the management of sexual well-being concerns of cancer/palliative care patients.
Methods An anonymous electronic questionnaire was sent to assess current practice and education needs relating to the management of sexual well-being in cancer and palliative care.
Results The majority of HCPs did not routinely assess sexual well-being in cancer and palliative care patients, with only 13.8% of secondary care staff, 7.9% of district nurses and 4% of general practitioners (GPs) routinely assessing it. The most frequent reason for non-assessment was that it was not the presenting symptom. The majority of respondents felt further support and training would be of benefit, including knowledge of specialist services patients could be referred to, written information for patients and access to assessment tools.
Conclusions This survey identified that sexual well-being in cancer and palliative care patients is not routinely assessed with the majority of respondents stating that further support and training would be beneficial. The results of this questionnaire will be used to inform and develop sexual well-being training for HCPs working with cancer and palliative care patients.
- sexuality
- palliative care
- Cancer
- Quality of life
- Survivorship
- Psychological care
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Introduction
It is recognised that cancer and its treatment can have a huge impact on sexual function. As cancer survival rates increase and there is a greater emphasis on ‘survivorship’ and rehabilitation there is a growing need for sexuality to be considered as part of routine cancer and palliative care management, as has been recommended by National Institute for Health and Care Excellence (NICE).1
Studies have reported sexual dysfunction prevalence rates of 20–100% in patients with cancer2 and it is known that cancer and cancer treatments lead to distressing sexual problems that persist for many years.3 ,4 A Canadian study found that sexuality continues to be important in the last weeks of life for palliative care,5 while another study found that significantly more palliative and oncology patients wanted the opportunity to discuss their sexual lives with a professional than did healthy controls.6 However, it is well established that sexual well-being is rarely explored in cancer and palliative care settings.7–10
This study aimed to identify the current practice of healthcare professionals (HCPs) working with cancer and palliative care patients in one Health Board in Wales in relation to sexual well-being, and to ascertain their need for training on sexual well-being issues in cancer and palliative care.
Methods
A review of the literature relating to sexual well-being in cancer and palliative care was undertaken. Clinical experience of a number of clinicians who form a sexual well-being in cancer and palliative care group was combined with results of the literature review to develop an electronic questionnaire. The questionnaire included a total of seven items which broadly relate to three themes: knowledge levels, practice in assessing sexual well-being concerns and need for further training. All questions were categorical, but five also included the option to insert free text. The questionnaire was developed using SurveyMonkey (an online survey builder) to allow delivery via email.
Inclusion criteria
HCPs who regularly work with cancer and palliative care patients in one health board in Wales: general practitioners (GPs), district health nurses (DNs), specialist palliative care teams (clinical nurse specialists, doctors, healthcare support workers) and multidisciplinary cancer teams (clinical nurse specialists, medical consultants, allied health professionals).
Exclusion criteria
Voluntary sector employed HCPs working with cancer and palliative care patients.
Email addresses for potential participants were identified through contacting the administrative support for each team (general practice, oncology, palliative care, district nursing). An introductory email was sent to potential participants, which contained an overview of the study and the link to the survey. Two reminder emails were sent to potential participants, each 2 weeks apart. Respondents had 6 weeks in which to answer the questionnaire. Informed consent was assumed if the professional had completed the questionnaire.
Results
In total, 121 HCPs completed the survey; this represented an overall 34% response rate. However, 100% of palliative care HCPs surveyed responded, while only 40% of GPs and 8% of DNs responded. The surveys were sent out in four separate batches, first to palliative care and oncology HCPs, second to GPs and third to DNs. The surveys were sent between April 2014 and July 2016. Professional groups represented were: nurses (59%), doctors (33%), healthcare support workers (4%), surgeons (3%) and allied health professionals (1%).
Just under half (48%) of respondents were oncology and palliative care staff working in secondary care, and of these palliative care was the largest represented group. The remainder of the respondents worked with cancer and palliative care patients as part of their role in primary care (31% DNs, 21% GPs).
The majority of HCPs (80% GPs, 73.7% DNs and 65.5% in secondary care) indicated that they did not routinely assess sexual well-being with cancer and palliative care patients. An appreciable minority of staff did not assess sexual well-being at all (13.8% secondary care, 8% GPs and 13% DNs). A relatively small proportion of staff assesses sexual well-being on a routine basis—this was higher for secondary care staff (13.8%) than for GPs and DNs (4% and 7.9%, respectively).
The most endorsed reason by all groups for not assessing sexual well-being was that it was not the presenting problem at the consultation (figure 1). Other highly endorsed reasons included the patient not having raised sexual well-being concerns, sexual well-being not being the predetermined focus of the appointment, not having the right setting to ask, the professional seeing it as an invasion of privacy and a lack of training. Although numbers were small it was noteworthy that some GPs (12%) and DNs (10.5%) cited sexual well-being not being a legitimate clinical issue as the reason for not assessing (compared with 3.5% in secondary care).
Reasons healthcare professionals do not assess sexual well-being with cancer and palliative care patients.
The majority of respondents felt training would encourage them to assess sexual well-being more routinely. All three groups endorsed that knowledge of what services they could refer on to would help, particularly DNs (83.8%). The majority of staff endorsed a need for access to written resources about sexual well-being and cancer to give to patients. Approximately half of secondary care professionals and DNs thought knowledge of assessment guidance and tools would help them assess more (compared with 33% for GPs). The overwhelming majority of staff in primary care and 80% of those in secondary care indicated that they do not currently use tools to aid assessment of sexual well-being.
In total, 70% of district nurses and 50% of secondary care professionals thought that knowing more about how cancer affects sexual well-being would help them assess more routinely, compared with a third of GPs.
Discussion
This study found that the majority of HCPs do not routinely assess sexual well-being in cancer and palliative care patients, with a subgroup not assessing at all. This study has shown that a significant number of HCPs, especially GPs, do not assess sexual well-being because it was not the presenting symptom or they are waiting for the patient to raise the issue. This survey also found that HCPs would welcome further support and training, especially knowledge of specialist services, patient information and tools to aid assessment.
Our findings reflect previous studies that have found that HCPs do not routinely address sexual well-being with cancer and palliative care patients.8–10 While one of the reasons respondents in our survey did not assess sexual well-being routinely was because they were waiting for the patient to raise the issue, existing research indicates patients may be holding back. The third National Survey of Sexual Attitudes and Lifestyles (NATSAL-3) study11 found that most people who had experienced a health problem that affected their sex life had not sought professional help for it. Existing research indicates patients want professionals to initiate the conversation, indicating it as a ‘legitimate’ concern.9
Previous research has shown that staff avoids asking about sexual well-being because of embarrassment and beliefs and attitudes about sex.12 However, there was a relatively low level of endorsement of these factors from respondents in our survey supporting the findings of Kotronoulas et al13 that oncology professionals hold relatively liberal attitudes towards sexuality.
Our results indicate that staff would be more likely to routinely assess sexual concerns if they had more knowledge about sexuality and cancer, if they knew of services to refer their patients who have concerns to, and if they had better access to written resources for patients. This resonates with previous studies; Hautamäki et al10 found that lack of training was the most endorsed reason for HCPs not discussing sexuality, while Price14 suggested the tendency for HCPs to feel responsible for fixing concerns raised by their patients as an inhibitory factor.
There are a number of limitations to this study. The study was designed initially within the spirit of understanding current practice and training needs to guide service development and for that reason our survey lacked the rigour and depth of a more extensive piece of research. The relatively small sample size combined with the fact that not all clinicians working with cancer and palliative care patients were represented (with few responses from surgeons and allied HCPs) limit generalisation to wider HCP groups. A further limitation was the reliance on the survey method which may have created a positive bias with most staff representing their practice in a favourable light, although we attempted to control this through anonymising responses.
A minority of respondents questioned whether routine assessment of sexual well-being was necessary. Future research could explore this in greater detail and could also focus on the impact of training on the knowledge and assessment rates of HCPs.
Conclusion
The sexual well-being of cancer and palliative care patients is something that remains only partially integrated into services. The results of this survey underscore the need for the staff training on the importance of addressing sexual well-being. As Bates15 highlights, assessing sexual well-being is an important part of holistic care and the consequences of poor sexual health are costly. We need to be giving patients opportunities to discuss their sexual well-being in the context of cancer and palliative care.
Footnotes
Contributors All persons who meet authorship criteria are listed as authors, and all authors certify that they have participated sufficiently in the work to take public responsibility for the content, including participation in the concept, design, analysis, writing or revision of the manuscript. Furthermore, each author certifies that this material or similar material has not been and will not be submitted to or published in any other publication before its appearance in the BMJ Supportive and Palliative Care.
Contributions by authors are listed below:
Conception or design of the work is contributed by AG and EH. Data collection is performed by AG and EH. Data analysis/interpretation is performed by AG and EH. Drafting the article is performed by AG and EH. Critical revision of the article is performed by AG and EH. Final approval of the version to be published is provided by AG, EH.
Competing interests None declared.
Ethics approval This study included human subjects. The study was granted approval by the Aneurin Bevan University Health Board Research and Development Department.
Provenance and peer review Not commissioned; internally peer reviewed.
Data sharing statement Additional data from this questionnaire study is available to the BMJ Supportive and Palliative Care through the corresponding author AG.