Psycho-Oncology Psycho-Oncology 24: 458–464 (2015) Published online 2 September 2014 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3663
Sexual issues among cervical cancer survivors: how can we help women seek help? Willemijn M. Vermeer1*, Rinske M. Bakker1, Gemma G. Kenter3, Cor D. de Kroon1, Anne M. Stiggelbout2 and Moniek M. ter Kuile1 1
Department of Gynaecology, Leiden University Medical Centre, Leiden, The Netherlands Department of Medical Decision Making, Leiden University Medical Centre, Leiden, The Netherlands 3 Centre for Gynaecological Cancer Amsterdam, Amsterdam, The Netherlands 2
*Correspondence to: Department of Gynaecology, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, The Netherlands. E-mail: [email protected]
Received: 6 June 2013 Revised: 7 August 2014 Accepted: 7 August 2014
Abstract Objective: Many women treated for cervical cancer (CC) report sexual complaints and sexual distress. It is important to assess these women’s and their partners’ sexual healthcare needs. This study aims to (a) investigate the prevalence of psychosexual healthcare needs and help-seeking behaviour among CC survivors, (b) identify the association between psychosocial variables and help-seeking intentions among CC survivors and (c) assess survivors’ and partners’ preferences regarding psychosexual healthcare services. Methods: A multicentre cross-sectional questionnaire study was conducted in a cohort of women with a history of CC (n = 343, mean age = 48.7), and their partners (n = 154, mean age = 50.8). Questions concerned professional healthcare needs, help-seeking behaviour, help-seeking intentions and preferences regarding sexual healthcare services. Furthermore, the questionnaire assessed social cognitive variables related to help-seeking intentions. Data were analysed with multivariate linear regression analyses with future help-seeking intention as an outcome variable. Results: About 51% of the women reported a need for information and/or professional help, although only 35% of these women had initiated a conversation with a professional about sexuality. Women considering sexual functioning important, expecting relief from seeking help, perceiving social support to seek help and having positive beliefs about the quality of professional psychosexual support had higher help-seeking intentions. Women who were embarrassed to discuss sexual issues with a professional were less likely to seek help. Most participants would appreciate receiving information about sexuality and CC. Conclusions: Many CC survivors have psychosexual healthcare needs, although few seek professional help. Women and their partners should be facilitated in accessing sexual healthcare services. Copyright © 2014 John Wiley & Sons, Ltd.
Introduction Improved treatment and early detection have led to higher survival rates and a larger number of women living with a history of cervical cancer (CC) [1]. These developments have contributed to an increasing attention to quality of life aspects such as sexuality [2,3]. The different treatment modalities for CC can have a negative impact on sexual functioning, and 23% to 70% of CC survivors report one or more sexual dysfunctions [4–7]. Sexual dysfunctions that are especially prevalent among CC survivors are pain during intercourse, vaginal dryness, stenosis, or shortening, and a decreased interest in sex [4–7]. Especially for younger CC survivors, sexual dysfunctions are an important source of distress [8] and relational sexual concerns, such as perceived changes in their partners’ sexual interest or feeling unable to meet their partners’ sexual needs [9,10]. Concurrently, partners of CC survivors can also experience negative emotions resulting from the changes that have occurred in their Copyright © 2014 John Wiley & Sons, Ltd.
sexual life [11], and CC survivors are at an increased risk for divorce [12]. With respect to medical interventions for psychosexual dysfunction in women treated for gynaecological cancer, it has been shown that vaginal oestrogen cream lead to a short-term reduction of dyspareunia [13]. Psychological interventions targeting sexual complaints after gynaecological cancer that have been developed and evaluated so far include – among others – elements from cognitive behavioural therapy. In general, these interventions have shown to be feasible and moderately effective in reducing sexual complaints following gynaecological cancer [14]. Despite the high prevalence of sexual problems among CC survivors, few seek treatment. It has been found that 42% to 74% of women with a history of gynaecological or breast cancer were interested in receiving professional help [6,15,16]. Only 7% to 40% of the survivors, however, actually sought or received such help [6,15,16]. Possibly, cancer survivors with sexual healthcare needs have difficulties accessing healthcare services. Only one
Sexual issues and help-seeking among cervical cancer survivors
very small study has qualitatively explored barriers in seeking or utilising sexual health-related services among (n = 15) gynaecological cancer survivors [17]. Moreover, the partner’s perspective has not yet been taken into account in studies assessing gynaecological cancer survivors’ sexual healthcare needs and help-seeking. Social cognitive variables such as those defined in the theory of planned behaviour (TPB) have been used to explain various types of health behaviour [18] and contain several constructs (such as attitudes or normative beliefs towards the behaviour) that can predict professional help-seeking for sexual concerns among CC survivors. This study (a) investigated the prevalence of needs for sexual healthcare and help-seeking behaviour among CC survivors, (b) explored the association between TPB variables and help-seeking intentions among CC survivors (while controlling for participant characteristics such as age, relationship dissatisfaction and sexual distress) and (c) assessed CC survivors’ and partners’ preferences regarding sexual healthcare services.
Methods Participants and study procedures A multicentre cross-sectional questionnaire study was conducted at the Leiden University Medical Centre (LUMC) in partnership with the Centre for Gynaecological Oncology Amsterdam. Patient records of women treated between January 2000 and June 2011 were screened for study eligibility. Inclusion criteria were having undergone a radical hysterectomy with pelvic lymphadenectomy (RHL) with or without adjuvant (chemo)radiotherapy (CT)RT or a treatment consisting of primary CTRT. Exclusion criteria were recurrent or metastatic cancer, age (>70 years), treatment other than RHL and/or primary or adjuvant (CT)RT, living abroad or a language barrier. Invitation letters were sent to all eligible women. Women who did not respond within 1 month were sent a reminder and were telephoned 1 week later. The questionnaire, in the Dutch language, was available in a paper and pencil version or could be completed online. A separate envelope with a questionnaire was sent to all women to invite their partner (if applicable) to participate. The LUMC Medical Ethical Committee approved the protocol.
Measurements Healthcare needs, help-seeking intentions and behaviour
Women’s professional healthcare needs were asked with the following five-point Likert item (1 = never to 5 = very often): ‘Do you currently experience professional healthcare needs with respect to CC treatment and sexual functioning or have you experienced such needs in the past?’ This item was dichotomised in never versus once or more often. In the remainder of this paper, professional Copyright © 2014 John Wiley & Sons, Ltd.
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healthcare needs will be described in the present perfect tense. Help-seeking behaviour was measured with a number of investigator-derived (not validated) questions. Women, who had indicated a need for help, were asked how often they had had a conversation with a healthcare professional about sexual concerns using a five-point Likert scale item (ranging from 1 = never to 5 = very often). If 2 or higher was scored, women were asked to indicate with which healthcare provider they had talked. Lastly, we asked them who initiated the consultation. Help-seeking was defined as the woman initiating the consultation as opposed to the healthcare provider. Intention to seek professional help if experiencing sexual problems within the next year was measured with a fivepoint Likert item ranging from definitely not to definitely. Social cognitive variables
Because no validated measures were available with respect to determinants of professional help-seeking for sexual issues, we developed 21 five-point Likert items (1 = totally disagree – 5 = totally agree). Eighteen of the 21 items measured TPB constructs [19]. TPB constructs that were included in this study were (a) attitudes (the degree of favourable or unfavourable appraisals of helpseeking for sexual concerns), (b) social support and influence (the expected amount of support from significant others to seek help and perceptions of how likely significant others are to seek help for sexual concerns) and (c) perceived behavioural control (the perceived ease or difficulty of performing a specific behaviour, such as for instance knowing which professional to consult when seeking help for sexual concerns) [19]. The items were pilot-tested with respect to their comprehensibility on a limited number of healthy women varying in age and educational level. A principal components analysis (eigenvalue = 1) indicated a five-component solution. Seventeen of the 18 items loaded at least 4 on one of the five components and were retained. The first component termed ‘Beliefs with respect to the importance of sexual functioning’ contained two items (e.g. ‘Sexual functioning is important for my quality of life’) and accounted for 20% of the variance (α = .70). The second component, ‘Beliefs about sexual dysfunctions as a normal result of cancer treatment’, consisted of three items (e.g. ‘In light of a cancer diagnosis, sexual complaints are bearable’) and accounted for 10% of the variance (α = .64). The third component was described as ‘Beliefs with respect to the quality of professional psychosexual support’ and contained six items (e.g. ‘Healthcare workers offer enough privacy to talk with me about my sexual functioning’) accounting for 9% of the variance (α = .80). The fourth component, ‘Perceived social support and influence’, consisted of four items (e.g. ‘My partner would support Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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me if I discussed my sexual functioning with a professional’ or ‘If a friend had sexual complaints, she would talk with a professional’) and accounted for 8% of the variance (α = .65). The fifth component, which was termed ‘Perceived behavioural control’, contained two items (e.g. ‘I know whom to consult if I have questions about my sexual functioning’) accounting for 6% of the variance (α = .64). In addition to the TPB subscales, three single items were included in the questionnaire that we expected to be associated with professional help-seeking intentions for sexual dysfunctions. This was based on clinical experience and a qualitative study among gynaecological cancer about reasons for not seeking medical help for severe pelvic floor symptoms [20]. These items were ‘I would be embarrassed to discuss my sexual functioning with a professional’, ‘Unless it is medically necessary, I rather avoid hospitals’ and ‘It would relieve me to discuss my sexual functioning with a professional’.
Healthcare preferences
Partner perceptions about sexual dysfunctions and social support
Demographic and disease and treatment-related variables
The partner questionnaire consisted of 7 five-point Likert items (1 = totally disagree – 5 = totally agree) measuring social cognitive variables related to help-seeking again based on TPB constructs. By means of a principal components analysis (eigenvalue = 1), two components were derived. Items with at least a loading of 4 on one component were retained. The first component, termed ‘Beliefs with respect to the negative impact of sexual dysfunctions on their quality of life and relationship’, contained four items (e.g. ‘Our relation suffers from my partner’s sexual problems’) and accounted for 46% of the variance (α = .90). The second component, ‘Social support according to the partner’, consisted of three items (e.g. ‘I would support my partner if she were to decide to talk with a professional about her sexual functioning’) and accounted for 25% of the variance (α = .65). We expected that help-seeking intentions were positively associated with having positive beliefs with respect to the importance of sexual functioning, beliefs with respect to the quality of professional psychosexual support, social support and influence, perceived behavioural control and expected relief from discussing sexual issues with a professional. Furthermore, we expected that stronger beliefs that sexual dysfunctions are a normal result of cancer (treatment), hospital avoidance and embarrassment were negatively associated with help-seeking intentions. Furthermore, we expected that partnered cancer survivors’ intentions to seek help were positively associated with social support from the partner and their partners’ beliefs with respect to the negative impact of sexual dysfunctions on quality of life and the relationship. Copyright © 2014 John Wiley & Sons, Ltd.
Women were asked to indicate at what moment they experienced a need for help, and both women and partners were asked which communication modes (e.g. oral, written or online) they would prefer to receive help from. Sexual distress and relation dissatisfaction
Sexual distress was measured with the 12-item Female Sexual Distress Scale (FSDS) [21,22]. The FSDS has been previously used with cancer survivors [23], and Cronbach’s α = .97 within the current sample and α = .90 in the original validation study [21]. Higher scores indicate more feelings of distress, and scores ≥15 have been signified to establish the presence of sexually related personal distress [21,22]. Relation dissatisfaction was measured with the 10-item marital dissatisfaction subscale of the Maudsley Marital Questionnaire [24,25], with Cronbach’s α = .94 within the current sample and α = .88 in the original validation study [24]. Higher scores indicate more dissatisfaction.
Demographic variables included age, having children (yes versus no), having a partner (yes versus no; male versus female), relationship duration, educational level (primary versus secondary versus tertiary) and whether or not the participant was able to work (yes versus no). Additionally, we collected disease (e.g. International Federation of Gynecology and Obstetrics stage) and treatment (e.g. treatment modality, date of treatment) related variables from women’s medical records.
Statistical analyses If more than 20–25% (depending on the subscale) of a subscale was missing, it was excluded from the regression analyses (listwise). Descriptive statistics (i.e. frequencies and percentages) were used to analyse demographic, disease and treatment-related information, to calculate the proportion of women who (had) experienced healthcare needs and who had initiated a conversation with a professional and to quantify the preferences of women and their partners regarding sexual healthcare services. Bivariate correlation (Pearson and Spearman) analyses were conducted to identify which variables were associated with help-seeking intentions. Variables that were significantly (p < .05) correlated with help-seeking intentions were included in the multivariate regression analysis. A hierarchical regression analysis was conducted with help-seeking intention as the dependent variable. To control for participant characteristics (i.e. age, having a partner, time since treatment, relationship duration,1 relationship dissatisfaction1 and sexual distress), variables that were significantly correlated (p < .05) with help-seeking intentions were entered in block 1 of the hierarchical Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
Sexual issues and help-seeking among cervical cancer survivors
model. In block 2, TPB variables were entered that were significantly correlated with help-seeking intentions (stepwise entry: pin < .05). The programme IBM SPSS version 21 (Armonk, NY, USA) was used for the statistical analyses.
Results Descriptives A total of 770 women were invited to participate of whom 541 responded (71%) and 343 (45%) completed the questionnaire. The most frequently mentioned reason for refusing to participate was that the study topic was too upsetting or intimate. Of the 252 women with a partner, 154 partners (61%) participated in the study, and 81 (32%) did not respond. Seventeen men (7%) who responded but did not want to participate stated that the topic was too intimate and/or that they did not have time. Figure 1 (see supporting information for details) gives an overview of the participant selection. Women who participated in the study did not differ from women who did not respond or participate with respect to age, time since treatment, medical centre and International Federation of Gynecology and Obstetrics stage, but had more often undergone RT (51%) than the participating women (42%, χ 2 (1) = 5.57, p ≤ .05). Furthermore, women in a relationship with a partner who participated in the study had lower scores (mean = 12.14, standard deviation (SD) = 13.01) on relation dissatisfaction than women with a partner who did not participate (mean = 17.90, SD = 15.44), t(247) = 3.16, p ≤ .05. Women’s mean age was 49 years, and the majority of the women (74%) were in a relationship. Table 1 gives an overview of the participants’ background characteristics. About one third of the women (36%) were sexually distressed according to the FSDS cut-off score. Thirty nine per cent of the participating women agreed that healthcare workers had adequately informed them about possible consequences of the cancer treatment on sexual functioning. Only 26% thought that healthcare workers have enough time to talk with them about their sexual functioning, and 40% thought that healthcare workers offer enough privacy to discuss sexual functioning.
Prevalence of psychosexual healthcare needs and help-seeking behaviour About half of all participants (51%, n = 175) reported to have experienced a need for information and/or professional help for their sexual concerns. The prevalence of sexual healthcare needs did not differ between women with and without a partner. Among women with a need for help, 63% (n = 111) reported to have had a conversation with a professional. Sixty-one of the women who talked about sexuality with a professional had initiated this conversation themselves, which is equal to 35% of all women with a need for help. Of the 61 women who Copyright © 2014 John Wiley & Sons, Ltd.
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Table 1. Participant characteristics (n = 343) % Age woman (years) Age partner (n = 149, years) Time since treatment (years) Having children Having a partner Male partnera Relationship duration (years) Educational level
FIGO ≤ stage IIA Radiotherapy Chemotherapy Surgery Type of surgeryb
Surgery only Surgery and adjuvant (chemo)radiotherapy Primary (chemo)radiotherapy Clinical level of sexual distress (FSDS >15) Healthcare workers have adequately informed me about possible consequences of the cancer treatment for my sexual functioning.
Healthcare workers have enough time to talk with me about my sexual functioning.
Healthcare workers offer enough privacy to talk with me about my sexual functioning.
Mean (SD) 48.7 (8.9) 50.8 (9.6) 5.7 (3.1)
74.0 74.1 98.2 18.4 (12.3) Primary Secondary Tertiary
RHL-WOc RHL-WMNSd RHL-WMe
2.4 65.6 32.0 84.9 40.7 29.2 84.5 50.0 31.9 18.1 59.8 23.6 16.6 35.7
(totally) Disagree
35.2
Neutral (totally) Agree (totally) Disagree
25.6 39.1 18.3
Neutral (totally) Agree (totally) Disagree
56.2 25.6 6.1
Neutral (totally) Agree
54.1 39.8
Percentages may not add up to hundred due to rounding. SD, standard deviation; FIGO, International Federation of Gynecology and Obstetrics; FSDS, Female Sexual Distress Scale. a Among the participants with a partner (n = 250). b Among the women who had surgery (n = 284). c Wertheim–Okabayashi. d Wertheim Meigs nerve sparing. e Wertheim Meigs.
had initiated a conversation themselves, the most often mentioned professional with whom they had discussed their sexual concerns was a gynaecologist (mentioned by 82% of 61 women), followed by a radiotherapist (48% of the 27 women treated with radiotherapy), a general practitioner (18% of 61 women) and a sexologist (14% of 61 women). Among the women with a need for information or support for sexual concerns (n = 175), the moment that the highest need was reported differed between women who were treated with RT (n = 74) compared with women who were not (n = 97), χ 2 (2) = 12.89, p ≤ .01. Results Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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The variables that had significant correlations (p < .05) with help-seeking intentions were stepwise entered in the multivariate regression analyses with help-seeking intentions as the dependent variable (Table 2), after controlling for relevant biographic and patient characteristics in the first step. The first step explained 7% of the total variance in help-seeking intention. The subsequent steps accounted for significant additional proportions in the variance of help-seeking intention with the final model explaining 29% of the variance. Help-seeking intentions were positively associated with beliefs with respect to the importance of sexual functioning (ß = .20), expecting relief (ß = .19), social support and influence (ß = .17) and having positive beliefs towards the quality of professional psychosexual support (ß = .16). Finally, there was a negative association between embarrassment and help-seeking intentions (ß = .16). When the multivariate regression analysis was conducted on women with a participating partner only (n = 144), the final model was comparable with the model for all women except that in this subgroup, embarrassment and expected relief were not associated with help-seeking intentions. This was likely the result of a lack of statistical power. Variables related to the partners’ perceptions about sexual dysfunctions and social support were not associated with help-seeking intentions in the final model.
showed that 14% of the women who had received RT reported the highest need for information or support during treatment compared with 1% of the women who were not treated with radiotherapy. Directly after treatment, 13% of the women treated with RT reported the highest need for information or support compared with 23% of the women who did not receive RT.
Demographic and social cognitive variables associated with professional help-seeking intentions Help-seeking intentions had significant negative correlations with age, r(332) = .26, p = .00, and relationship duration, r(243) = .29, p = .00. Furthermore, significant positive correlations were found between women’s helpseeking intentions and beliefs with respect to the importance of sexual functioning, r(329) = .37, p = .00, social support and influence, r(327) = .34, p = .00, beliefs with respect to the quality of professional psychosexual support, r(319) = .31, p = .00, and relief, r(326) = .27, p = 00. A negative correlation was found between helpseeking intention and embarrassment, r(329) = .24, p = .00. Among women with a participating partner, help-seeking intentions were positively correlated with social support as reported by the partner, r(148) = .18, p = .01. Furthermore, help-seeking intentions were negatively correlated with partner beliefs with respect to the negative impact of sexual dysfunctions on the relationship and quality of life, r(148) = .16, p = .03. This means that women with a partner who strongly believed that their relationship and quality of life suffered from sexual dysfunctions were less likely to seek help.
Cervical cancer survivors’ and partners’ preferences regarding sexual healthcare services A large majority of the women (83%) and their partners (82%) would appreciate receiving information about
Table 2. Final model of stepwise hierarchical regression of social cognitive variables associated with the intention to seek help within the next year if experiencing sexual concerns Women with a participating partner only (n = 144)
All women (n = 320)
Block 1 Age Relationship duration Block 2 Social support and influence Beliefs with respect to the importance of sexual functioning Beliefs with respect to the quality of professional psychosexual support ‘It would relieve me to discuss my sexual functioning with a professional’ ‘I would be embarrassed to discuss my sexual functioning with a professional 2
B
SE
ß
ΔR
.01
.01
.10
.08 .15
.02 .04
.05
2
2
B
SE
ß
ΔR
.07**
.00 .00
.01 .01
.01 .00
.06*
.17** .20**
.09** .06**
.16 .25
.04 .07
.33** .28**
.18** .08**
.02
.16**
.03**
.08
.02
.25**
.05**
.24
.06
.19**
.03**
.17
.06
.16**
.02*
2
SE, standard error. All women. Block 1: Total R = .07, F(319) = 22.80, p = .00, final model: Total R = .29, F(319) = 21.58, p = .00. Women with a participating partner only. Block 1: 2 2 Total R = .06, F(143) = 4.26, p = .02, final model: Total R = .37, F(143) = 16.12, p = .00. *p ≤ .05. **p ≤ .001.
Copyright © 2014 John Wiley & Sons, Ltd.
Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
Sexual issues and help-seeking among cervical cancer survivors
sexuality and CC. In general, all communication channels were highly endorsed by the women and their partners. The most preferred channels among women however were a website (78%) and verbal information (77%). Among partners, verbal information was most popular (81%) followed by a website (71%). The least supported service (but still endorsed by the majority of the participants) was the provision of an email address for questions about sexual issues (women: 70%, partners: 66%), and a list with contact information of professional healthcare workers (women: 69%, partners: 58%). Lastly, 76% of the women and 65% of the partners considered it desirable that partners are involved in sexual healthcare provision.
Discussion and conclusion The study results show that about half of the CC survivors reported current or past professional healthcare needs for their sexual concerns. In line with other research [16], a large proportion (i.e. approximately two thirds) of these women, however, did not initiate a conversation about sexual functioning with a professional. Prognostic variables of help-seeking intentions were the extent to which women considered sexual functioning important for their quality of life, expecting relief from seeking help, social support and influence with respect to help-seeking (i.e. having a partner or friends who would support women if they were to seek help) and having positive beliefs towards the quality of professional psychosexual support (e.g. believing that professionals offer sufficient time and privacy to discuss sexual issues). Corresponding with other studies [17], embarrassment was negatively associated with help-seeking intention. Surprisingly, the partners’ perceptions with respect to the severity of the sexual dysfunctions and social support were not associated with women’s help-seeking intentions. Lastly, the results show that 83% of the women and 82% of their partners reported a need for information about sexuality and cancer and that the majority would value a website or the provision of verbal information. Preferences with respect to psychosexual support
The finding that a large majority of women and partners would appreciate receiving information about sexuality and CC corresponds with that of other research [17]. In line with other research [26], the need for psychosexual support started from 3 months after treatment until more than a year after treatment. Lastly, our results affirm previous findings [26] that most women and partners considered it desirable that partners were involved in the sexual healthcare and information provision. Limitations and suggestions for further research
The most important limitation was that the internal consistency of some subscales measuring TPB variables Copyright © 2014 John Wiley & Sons, Ltd.
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related to help-seeking intentions was relatively low. In addition, three constructs (i.e. embarrassment to seek help, expecting relief from seeking help and avoidance of hospitals) were measured with single items instead of validated scales. Although the items were derived from well-established theories explaining health behaviour and were pilot-tested with respect to their comprehensibility, the use of single items and scales with a relative low internal consistency can compromise the validity and reliability of these measurements. Another issue is that the study design allowed us to gather retrospective data only, which makes it impossible to make causal inferences. Furthermore, studies in sexuality are prone to suffer from selection bias [27], and our study sample might have been overrepresented by women with positive attitudes towards sexuality and sexual healthcare services. Furthermore, qualitative research could complement and deepen the results that were obtained in this study with insights in women’s experiences with psychosexual support, and unmet needs that they possibly experience. Implications for clinical practice
Healthcare professionals need to be aware that many women (regardless of their relational status or age) have a need for information and/or professional care for their sexual concerns. Because our data show that only 39% of the participants thought that they were adequately informed about the consequences of the treatment on their sexual functioning, there seems to be room for improvement. Information and care provision with respect to sexual functioning should start before treatment and continue during follow-up. This study demonstrated differences in the desired timing of the provision of information and support between women who were treated with radiotherapy and women who were not. Furthermore, preferences regarding the content of psychosexual support are likely to differ as well, for instance, as a function of women’s ethnic background. Ethnicity was not measured in this study and would be worth investigating in the future. All in all, a tailored approach with respect to the timing and content of support is recommended. Because our study results clearly showed that beliefs related to the amount of time and privacy professionals offer to discuss sexual concerns are related to helpseeking intentions, a last suggestion for professionals is to allocate sufficient time and privacy to address sexuality. A lack of time to screen women for sexual dysfunctions is however a commonly mentioned barrier by healthcare professionals [28]. Oncology professionals can be trained to provide, even with a small amount of time, basic sexual counselling to patients [29], and McKee and Schover advocate that a very brief Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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assessment of sexual function should be part of initial information gathering for new patients as well as a routine part of a follow-up visit [30]. Having gained more insight in CC survivors’ (and their partners’) psychosexual healthcare needs and help-seeking intentions, it is time for researchers to focus on the development and evaluation of interventions supporting CC survivors’ sexual rehabilitation.
References 1. Benedet JL. Progress in gynecologic cancer detection and treatment. Int J Gynaecol Obstet 2000;70:135–147. 2. Bjelic-Radisic V, Jensen PT, Vlasic KK, et al. Quality of life characteristics in patients with cervical cancer. Eur J Cancer 2012;48: 3009–3018. 3. Vistad I, Fossa SD, Dahl AA. A critical review of patient-rated quality of life studies of long-term survivors of cervical cancer. Gynecol Oncol 2006;102:563–572. 4. Bergmark K, Avall-Lundqvist E, Dickman PW, Henningsohn L, Steineck G. Vaginal changes and sexuality in women with a history of cervical cancer. N Engl J Med 1999;340:1383–1389. 5. Jensen PT, Groenvold M, Klee MC, Thranov I, Petersen MA, Machin D. Early-stage cervical carcinoma, radical hysterectomy, and sexual function. A longitudinal study. Cancer 2004;100:97–106. 6. Lindau ST, Gavrilova N, Anderson D. Sexual morbidity in very long term survivors of vaginal and cervical cancer: a comparison to national norms. Gynecol Oncol 2007;106:413–418. 7. Pieterse QD, Maas CP, ter Kuile MM, et al. An observational longitudinal study to evaluate miction, defecation, and sexual function after radical hysterectomy with pelvic lymphadenectomy for early-stage cervical cancer. Int J Gynecol Cancer 2006;16:1119–1129. 8. Bergmark K, Avall-Lundqvist E, Dickman PW, Henningsohn L, Steineck G. Patient-rating of distressful symptoms after treatment for early cervical cancer. Acta Obstet Gynecol Scand 2002;81:443–450. 9. Abbott-Anderson K, Kwekkeboom KL. A systematic review of sexual concerns reported by gynecological cancer survivors. Gynecol Oncol 2012;124:477–489. 10. Kwekkeboom KL, Abbott-Anderson K, Cherwin C, Roiland R, Serlin RC, Ward SE. Pilot randomized controlled trial of a patient-
11.
12.
13.
14.
15.
16.
17.
18.
19. 20.
Acknowledgements This study was supported by the Dutch Cancer Society (grant no. UL 2010-4760).
Note 1. This only applies to participants in a relationship.
controlled cognitive-behavioral intervention for the pain, fatigue, and sleep disturbance symptom cluster in cancer. J Pain Symptom Manage 2012. Gilbert E, Ussher JM, Hawkins Y. Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer. Health (London) 2009;13:523–541. Carlsen K, Dalton SO, Frederiksen K, Diderichsen F, Johansen C. Are cancer survivors at an increased risk for divorce? A Danish cohort study. Eur J Cancer 2007;43:2093–2099. Flynn P, Kew F, Kisely SR. Interventions for psychosexual dysfunction in women treated for gynaecological malignancy. Cochrane Database Syst Rev 2009. Brotto LA, Yule M, Breckon E. Psychological interventions for the sexual sequelae of cancer: a review of the literature. J Cancer Surviv 2010;4:346–360. Berman L, Berman J, Felder S, et al. Seeking help for sexual function complaints: what gynecologists need to know about the female patient’s experience. Fertil Steril 2003;79:572–576. Hill EK, Sandbo S, Abramsohn E, et al. Assessing gynecologic and breast cancer survivors’ sexual health care needs. Cancer 2011;117:2643–2651. McCallum M, Lefebvre M, Jolicoeur L, Maheu C, Lebel S. Sexual health and gynecological cancer: conceptualizing patient needs and overcoming barriers to seeking and accessing services. J Psychosom Obstet Gynaecol 2012;33:135–142. Godin G, Kok G. The theory of planned behavior: a review of its applications to healthrelated behaviors. Am J Health Promot 1996;11:87–98. Ajzen I.. The theory of planned behavior. Organ Behav Hum Decis Process 1991;50:179–211. Hazewinkel MH, Sprangers MA, TaminiauBloem EF, van der Velden J, Burger MP, Roovers JP. Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer. BJOG 2010;117:39–46.
21. Derogatis LR, Rosen R, Leiblum S, Burnett A, Heiman J. The Female Sexual Distress Scale (FSDS): initial validation of a standardized scale for assessment of sexually related personal distress in women. J Sex Marital Ther 2002;28:317–330. 22. ter Kuile MM, Brauer M, Laan E. De Female Sexual Index (FSFI) en de Female Sexual Distress Scale (FSDS): Psychometrische eigenschappen in een Nederlandse populatie [psychometric properties within a Dutch population]. Tijd Seksuol 2009;33:207–222. 23. Brotto LA, Erskine Y, Carey M, et al. A brief mindfulness-based cognitive behavioral intervention improves sexual functioning versus wait-list control in women treated for gynecologic cancer. Gynecol Oncol 2012;125:320–325. 24. Arrindell WA, Boelens W, Lambert H. On the psychometric properties of the Maudsley Marital Questionnaire (MMQ) – evaluation of self-ratings in distressed and normal volunteer couples based on the Dutch version. Pers Individ Differ 1983;4:293–306. 25. Crowe MJ. Conjoint marital-therapy – controlled outcome study. Psychol Med 1978; 8:623–636. 26. Rasmusson E, Thome B. Women’s wishes and need for knowledge concerning sexuality and relationships in connection with gynecological cancer disease. Sex Disabil 2008; 26:207–218. 27. Strassberg DS, Lowe K. Volunteer bias in sexuality research. Arch Sex Behav 1995;24: 369–382. 28. Pauls RN, Kleeman SD, Segal JL, Silva WA, Goldenhar LM, Karram MM. Practice patterns of physician members of the American Urogynecologic Society regarding female sexual dysfunction: results of a national survey. Int Urogynecol J Pelvic Floor Dysfunct 2005;16:460–467. 29. Carter J, Goldfrank D, Schover LR. Simple strategies for vaginal health promotion in cancer survivors. J Sex Med 2011;8:549–559. 30. McKee AL, Jr., Schover LR. Sexuality rehabilitation. Cancer 2001;92:1008–1012.
Supporting information Additional supporting information may be found in the online version of this article at the publisher's web site.
Copyright © 2014 John Wiley & Sons, Ltd.
Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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Sexual issues among cervical cancer survivors: how can we help women seek help? Willemijn M. Vermeer1*, Rinske M. Bakker1, Gemma G. Kenter3, Cor D. de Kroon1, Anne M. Stiggelbout2 and Moniek M. ter Kuile1 1
Department of Gynaecology, Leiden University Medical Centre, Leiden, The Netherlands Department of Medical Decision Making, Leiden University Medical Centre, Leiden, The Netherlands 3 Centre for Gynaecological Cancer Amsterdam, Amsterdam, The Netherlands 2
*Correspondence to: Department of Gynaecology, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, The Netherlands. E-mail: [email protected]
Received: 6 June 2013 Revised: 7 August 2014 Accepted: 7 August 2014
Abstract Objective: Many women treated for cervical cancer (CC) report sexual complaints and sexual distress. It is important to assess these women’s and their partners’ sexual healthcare needs. This study aims to (a) investigate the prevalence of psychosexual healthcare needs and help-seeking behaviour among CC survivors, (b) identify the association between psychosocial variables and help-seeking intentions among CC survivors and (c) assess survivors’ and partners’ preferences regarding psychosexual healthcare services. Methods: A multicentre cross-sectional questionnaire study was conducted in a cohort of women with a history of CC (n = 343, mean age = 48.7), and their partners (n = 154, mean age = 50.8). Questions concerned professional healthcare needs, help-seeking behaviour, help-seeking intentions and preferences regarding sexual healthcare services. Furthermore, the questionnaire assessed social cognitive variables related to help-seeking intentions. Data were analysed with multivariate linear regression analyses with future help-seeking intention as an outcome variable. Results: About 51% of the women reported a need for information and/or professional help, although only 35% of these women had initiated a conversation with a professional about sexuality. Women considering sexual functioning important, expecting relief from seeking help, perceiving social support to seek help and having positive beliefs about the quality of professional psychosexual support had higher help-seeking intentions. Women who were embarrassed to discuss sexual issues with a professional were less likely to seek help. Most participants would appreciate receiving information about sexuality and CC. Conclusions: Many CC survivors have psychosexual healthcare needs, although few seek professional help. Women and their partners should be facilitated in accessing sexual healthcare services. Copyright © 2014 John Wiley & Sons, Ltd.
Introduction Improved treatment and early detection have led to higher survival rates and a larger number of women living with a history of cervical cancer (CC) [1]. These developments have contributed to an increasing attention to quality of life aspects such as sexuality [2,3]. The different treatment modalities for CC can have a negative impact on sexual functioning, and 23% to 70% of CC survivors report one or more sexual dysfunctions [4–7]. Sexual dysfunctions that are especially prevalent among CC survivors are pain during intercourse, vaginal dryness, stenosis, or shortening, and a decreased interest in sex [4–7]. Especially for younger CC survivors, sexual dysfunctions are an important source of distress [8] and relational sexual concerns, such as perceived changes in their partners’ sexual interest or feeling unable to meet their partners’ sexual needs [9,10]. Concurrently, partners of CC survivors can also experience negative emotions resulting from the changes that have occurred in their Copyright © 2014 John Wiley & Sons, Ltd.
sexual life [11], and CC survivors are at an increased risk for divorce [12]. With respect to medical interventions for psychosexual dysfunction in women treated for gynaecological cancer, it has been shown that vaginal oestrogen cream lead to a short-term reduction of dyspareunia [13]. Psychological interventions targeting sexual complaints after gynaecological cancer that have been developed and evaluated so far include – among others – elements from cognitive behavioural therapy. In general, these interventions have shown to be feasible and moderately effective in reducing sexual complaints following gynaecological cancer [14]. Despite the high prevalence of sexual problems among CC survivors, few seek treatment. It has been found that 42% to 74% of women with a history of gynaecological or breast cancer were interested in receiving professional help [6,15,16]. Only 7% to 40% of the survivors, however, actually sought or received such help [6,15,16]. Possibly, cancer survivors with sexual healthcare needs have difficulties accessing healthcare services. Only one
Sexual issues and help-seeking among cervical cancer survivors
very small study has qualitatively explored barriers in seeking or utilising sexual health-related services among (n = 15) gynaecological cancer survivors [17]. Moreover, the partner’s perspective has not yet been taken into account in studies assessing gynaecological cancer survivors’ sexual healthcare needs and help-seeking. Social cognitive variables such as those defined in the theory of planned behaviour (TPB) have been used to explain various types of health behaviour [18] and contain several constructs (such as attitudes or normative beliefs towards the behaviour) that can predict professional help-seeking for sexual concerns among CC survivors. This study (a) investigated the prevalence of needs for sexual healthcare and help-seeking behaviour among CC survivors, (b) explored the association between TPB variables and help-seeking intentions among CC survivors (while controlling for participant characteristics such as age, relationship dissatisfaction and sexual distress) and (c) assessed CC survivors’ and partners’ preferences regarding sexual healthcare services.
Methods Participants and study procedures A multicentre cross-sectional questionnaire study was conducted at the Leiden University Medical Centre (LUMC) in partnership with the Centre for Gynaecological Oncology Amsterdam. Patient records of women treated between January 2000 and June 2011 were screened for study eligibility. Inclusion criteria were having undergone a radical hysterectomy with pelvic lymphadenectomy (RHL) with or without adjuvant (chemo)radiotherapy (CT)RT or a treatment consisting of primary CTRT. Exclusion criteria were recurrent or metastatic cancer, age (>70 years), treatment other than RHL and/or primary or adjuvant (CT)RT, living abroad or a language barrier. Invitation letters were sent to all eligible women. Women who did not respond within 1 month were sent a reminder and were telephoned 1 week later. The questionnaire, in the Dutch language, was available in a paper and pencil version or could be completed online. A separate envelope with a questionnaire was sent to all women to invite their partner (if applicable) to participate. The LUMC Medical Ethical Committee approved the protocol.
Measurements Healthcare needs, help-seeking intentions and behaviour
Women’s professional healthcare needs were asked with the following five-point Likert item (1 = never to 5 = very often): ‘Do you currently experience professional healthcare needs with respect to CC treatment and sexual functioning or have you experienced such needs in the past?’ This item was dichotomised in never versus once or more often. In the remainder of this paper, professional Copyright © 2014 John Wiley & Sons, Ltd.
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healthcare needs will be described in the present perfect tense. Help-seeking behaviour was measured with a number of investigator-derived (not validated) questions. Women, who had indicated a need for help, were asked how often they had had a conversation with a healthcare professional about sexual concerns using a five-point Likert scale item (ranging from 1 = never to 5 = very often). If 2 or higher was scored, women were asked to indicate with which healthcare provider they had talked. Lastly, we asked them who initiated the consultation. Help-seeking was defined as the woman initiating the consultation as opposed to the healthcare provider. Intention to seek professional help if experiencing sexual problems within the next year was measured with a fivepoint Likert item ranging from definitely not to definitely. Social cognitive variables
Because no validated measures were available with respect to determinants of professional help-seeking for sexual issues, we developed 21 five-point Likert items (1 = totally disagree – 5 = totally agree). Eighteen of the 21 items measured TPB constructs [19]. TPB constructs that were included in this study were (a) attitudes (the degree of favourable or unfavourable appraisals of helpseeking for sexual concerns), (b) social support and influence (the expected amount of support from significant others to seek help and perceptions of how likely significant others are to seek help for sexual concerns) and (c) perceived behavioural control (the perceived ease or difficulty of performing a specific behaviour, such as for instance knowing which professional to consult when seeking help for sexual concerns) [19]. The items were pilot-tested with respect to their comprehensibility on a limited number of healthy women varying in age and educational level. A principal components analysis (eigenvalue = 1) indicated a five-component solution. Seventeen of the 18 items loaded at least 4 on one of the five components and were retained. The first component termed ‘Beliefs with respect to the importance of sexual functioning’ contained two items (e.g. ‘Sexual functioning is important for my quality of life’) and accounted for 20% of the variance (α = .70). The second component, ‘Beliefs about sexual dysfunctions as a normal result of cancer treatment’, consisted of three items (e.g. ‘In light of a cancer diagnosis, sexual complaints are bearable’) and accounted for 10% of the variance (α = .64). The third component was described as ‘Beliefs with respect to the quality of professional psychosexual support’ and contained six items (e.g. ‘Healthcare workers offer enough privacy to talk with me about my sexual functioning’) accounting for 9% of the variance (α = .80). The fourth component, ‘Perceived social support and influence’, consisted of four items (e.g. ‘My partner would support Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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me if I discussed my sexual functioning with a professional’ or ‘If a friend had sexual complaints, she would talk with a professional’) and accounted for 8% of the variance (α = .65). The fifth component, which was termed ‘Perceived behavioural control’, contained two items (e.g. ‘I know whom to consult if I have questions about my sexual functioning’) accounting for 6% of the variance (α = .64). In addition to the TPB subscales, three single items were included in the questionnaire that we expected to be associated with professional help-seeking intentions for sexual dysfunctions. This was based on clinical experience and a qualitative study among gynaecological cancer about reasons for not seeking medical help for severe pelvic floor symptoms [20]. These items were ‘I would be embarrassed to discuss my sexual functioning with a professional’, ‘Unless it is medically necessary, I rather avoid hospitals’ and ‘It would relieve me to discuss my sexual functioning with a professional’.
Healthcare preferences
Partner perceptions about sexual dysfunctions and social support
Demographic and disease and treatment-related variables
The partner questionnaire consisted of 7 five-point Likert items (1 = totally disagree – 5 = totally agree) measuring social cognitive variables related to help-seeking again based on TPB constructs. By means of a principal components analysis (eigenvalue = 1), two components were derived. Items with at least a loading of 4 on one component were retained. The first component, termed ‘Beliefs with respect to the negative impact of sexual dysfunctions on their quality of life and relationship’, contained four items (e.g. ‘Our relation suffers from my partner’s sexual problems’) and accounted for 46% of the variance (α = .90). The second component, ‘Social support according to the partner’, consisted of three items (e.g. ‘I would support my partner if she were to decide to talk with a professional about her sexual functioning’) and accounted for 25% of the variance (α = .65). We expected that help-seeking intentions were positively associated with having positive beliefs with respect to the importance of sexual functioning, beliefs with respect to the quality of professional psychosexual support, social support and influence, perceived behavioural control and expected relief from discussing sexual issues with a professional. Furthermore, we expected that stronger beliefs that sexual dysfunctions are a normal result of cancer (treatment), hospital avoidance and embarrassment were negatively associated with help-seeking intentions. Furthermore, we expected that partnered cancer survivors’ intentions to seek help were positively associated with social support from the partner and their partners’ beliefs with respect to the negative impact of sexual dysfunctions on quality of life and the relationship. Copyright © 2014 John Wiley & Sons, Ltd.
Women were asked to indicate at what moment they experienced a need for help, and both women and partners were asked which communication modes (e.g. oral, written or online) they would prefer to receive help from. Sexual distress and relation dissatisfaction
Sexual distress was measured with the 12-item Female Sexual Distress Scale (FSDS) [21,22]. The FSDS has been previously used with cancer survivors [23], and Cronbach’s α = .97 within the current sample and α = .90 in the original validation study [21]. Higher scores indicate more feelings of distress, and scores ≥15 have been signified to establish the presence of sexually related personal distress [21,22]. Relation dissatisfaction was measured with the 10-item marital dissatisfaction subscale of the Maudsley Marital Questionnaire [24,25], with Cronbach’s α = .94 within the current sample and α = .88 in the original validation study [24]. Higher scores indicate more dissatisfaction.
Demographic variables included age, having children (yes versus no), having a partner (yes versus no; male versus female), relationship duration, educational level (primary versus secondary versus tertiary) and whether or not the participant was able to work (yes versus no). Additionally, we collected disease (e.g. International Federation of Gynecology and Obstetrics stage) and treatment (e.g. treatment modality, date of treatment) related variables from women’s medical records.
Statistical analyses If more than 20–25% (depending on the subscale) of a subscale was missing, it was excluded from the regression analyses (listwise). Descriptive statistics (i.e. frequencies and percentages) were used to analyse demographic, disease and treatment-related information, to calculate the proportion of women who (had) experienced healthcare needs and who had initiated a conversation with a professional and to quantify the preferences of women and their partners regarding sexual healthcare services. Bivariate correlation (Pearson and Spearman) analyses were conducted to identify which variables were associated with help-seeking intentions. Variables that were significantly (p < .05) correlated with help-seeking intentions were included in the multivariate regression analysis. A hierarchical regression analysis was conducted with help-seeking intention as the dependent variable. To control for participant characteristics (i.e. age, having a partner, time since treatment, relationship duration,1 relationship dissatisfaction1 and sexual distress), variables that were significantly correlated (p < .05) with help-seeking intentions were entered in block 1 of the hierarchical Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
Sexual issues and help-seeking among cervical cancer survivors
model. In block 2, TPB variables were entered that were significantly correlated with help-seeking intentions (stepwise entry: pin < .05). The programme IBM SPSS version 21 (Armonk, NY, USA) was used for the statistical analyses.
Results Descriptives A total of 770 women were invited to participate of whom 541 responded (71%) and 343 (45%) completed the questionnaire. The most frequently mentioned reason for refusing to participate was that the study topic was too upsetting or intimate. Of the 252 women with a partner, 154 partners (61%) participated in the study, and 81 (32%) did not respond. Seventeen men (7%) who responded but did not want to participate stated that the topic was too intimate and/or that they did not have time. Figure 1 (see supporting information for details) gives an overview of the participant selection. Women who participated in the study did not differ from women who did not respond or participate with respect to age, time since treatment, medical centre and International Federation of Gynecology and Obstetrics stage, but had more often undergone RT (51%) than the participating women (42%, χ 2 (1) = 5.57, p ≤ .05). Furthermore, women in a relationship with a partner who participated in the study had lower scores (mean = 12.14, standard deviation (SD) = 13.01) on relation dissatisfaction than women with a partner who did not participate (mean = 17.90, SD = 15.44), t(247) = 3.16, p ≤ .05. Women’s mean age was 49 years, and the majority of the women (74%) were in a relationship. Table 1 gives an overview of the participants’ background characteristics. About one third of the women (36%) were sexually distressed according to the FSDS cut-off score. Thirty nine per cent of the participating women agreed that healthcare workers had adequately informed them about possible consequences of the cancer treatment on sexual functioning. Only 26% thought that healthcare workers have enough time to talk with them about their sexual functioning, and 40% thought that healthcare workers offer enough privacy to discuss sexual functioning.
Prevalence of psychosexual healthcare needs and help-seeking behaviour About half of all participants (51%, n = 175) reported to have experienced a need for information and/or professional help for their sexual concerns. The prevalence of sexual healthcare needs did not differ between women with and without a partner. Among women with a need for help, 63% (n = 111) reported to have had a conversation with a professional. Sixty-one of the women who talked about sexuality with a professional had initiated this conversation themselves, which is equal to 35% of all women with a need for help. Of the 61 women who Copyright © 2014 John Wiley & Sons, Ltd.
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Table 1. Participant characteristics (n = 343) % Age woman (years) Age partner (n = 149, years) Time since treatment (years) Having children Having a partner Male partnera Relationship duration (years) Educational level
FIGO ≤ stage IIA Radiotherapy Chemotherapy Surgery Type of surgeryb
Surgery only Surgery and adjuvant (chemo)radiotherapy Primary (chemo)radiotherapy Clinical level of sexual distress (FSDS >15) Healthcare workers have adequately informed me about possible consequences of the cancer treatment for my sexual functioning.
Healthcare workers have enough time to talk with me about my sexual functioning.
Healthcare workers offer enough privacy to talk with me about my sexual functioning.
Mean (SD) 48.7 (8.9) 50.8 (9.6) 5.7 (3.1)
74.0 74.1 98.2 18.4 (12.3) Primary Secondary Tertiary
RHL-WOc RHL-WMNSd RHL-WMe
2.4 65.6 32.0 84.9 40.7 29.2 84.5 50.0 31.9 18.1 59.8 23.6 16.6 35.7
(totally) Disagree
35.2
Neutral (totally) Agree (totally) Disagree
25.6 39.1 18.3
Neutral (totally) Agree (totally) Disagree
56.2 25.6 6.1
Neutral (totally) Agree
54.1 39.8
Percentages may not add up to hundred due to rounding. SD, standard deviation; FIGO, International Federation of Gynecology and Obstetrics; FSDS, Female Sexual Distress Scale. a Among the participants with a partner (n = 250). b Among the women who had surgery (n = 284). c Wertheim–Okabayashi. d Wertheim Meigs nerve sparing. e Wertheim Meigs.
had initiated a conversation themselves, the most often mentioned professional with whom they had discussed their sexual concerns was a gynaecologist (mentioned by 82% of 61 women), followed by a radiotherapist (48% of the 27 women treated with radiotherapy), a general practitioner (18% of 61 women) and a sexologist (14% of 61 women). Among the women with a need for information or support for sexual concerns (n = 175), the moment that the highest need was reported differed between women who were treated with RT (n = 74) compared with women who were not (n = 97), χ 2 (2) = 12.89, p ≤ .01. Results Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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The variables that had significant correlations (p < .05) with help-seeking intentions were stepwise entered in the multivariate regression analyses with help-seeking intentions as the dependent variable (Table 2), after controlling for relevant biographic and patient characteristics in the first step. The first step explained 7% of the total variance in help-seeking intention. The subsequent steps accounted for significant additional proportions in the variance of help-seeking intention with the final model explaining 29% of the variance. Help-seeking intentions were positively associated with beliefs with respect to the importance of sexual functioning (ß = .20), expecting relief (ß = .19), social support and influence (ß = .17) and having positive beliefs towards the quality of professional psychosexual support (ß = .16). Finally, there was a negative association between embarrassment and help-seeking intentions (ß = .16). When the multivariate regression analysis was conducted on women with a participating partner only (n = 144), the final model was comparable with the model for all women except that in this subgroup, embarrassment and expected relief were not associated with help-seeking intentions. This was likely the result of a lack of statistical power. Variables related to the partners’ perceptions about sexual dysfunctions and social support were not associated with help-seeking intentions in the final model.
showed that 14% of the women who had received RT reported the highest need for information or support during treatment compared with 1% of the women who were not treated with radiotherapy. Directly after treatment, 13% of the women treated with RT reported the highest need for information or support compared with 23% of the women who did not receive RT.
Demographic and social cognitive variables associated with professional help-seeking intentions Help-seeking intentions had significant negative correlations with age, r(332) = .26, p = .00, and relationship duration, r(243) = .29, p = .00. Furthermore, significant positive correlations were found between women’s helpseeking intentions and beliefs with respect to the importance of sexual functioning, r(329) = .37, p = .00, social support and influence, r(327) = .34, p = .00, beliefs with respect to the quality of professional psychosexual support, r(319) = .31, p = .00, and relief, r(326) = .27, p = 00. A negative correlation was found between helpseeking intention and embarrassment, r(329) = .24, p = .00. Among women with a participating partner, help-seeking intentions were positively correlated with social support as reported by the partner, r(148) = .18, p = .01. Furthermore, help-seeking intentions were negatively correlated with partner beliefs with respect to the negative impact of sexual dysfunctions on the relationship and quality of life, r(148) = .16, p = .03. This means that women with a partner who strongly believed that their relationship and quality of life suffered from sexual dysfunctions were less likely to seek help.
Cervical cancer survivors’ and partners’ preferences regarding sexual healthcare services A large majority of the women (83%) and their partners (82%) would appreciate receiving information about
Table 2. Final model of stepwise hierarchical regression of social cognitive variables associated with the intention to seek help within the next year if experiencing sexual concerns Women with a participating partner only (n = 144)
All women (n = 320)
Block 1 Age Relationship duration Block 2 Social support and influence Beliefs with respect to the importance of sexual functioning Beliefs with respect to the quality of professional psychosexual support ‘It would relieve me to discuss my sexual functioning with a professional’ ‘I would be embarrassed to discuss my sexual functioning with a professional 2
B
SE
ß
ΔR
.01
.01
.10
.08 .15
.02 .04
.05
2
2
B
SE
ß
ΔR
.07**
.00 .00
.01 .01
.01 .00
.06*
.17** .20**
.09** .06**
.16 .25
.04 .07
.33** .28**
.18** .08**
.02
.16**
.03**
.08
.02
.25**
.05**
.24
.06
.19**
.03**
.17
.06
.16**
.02*
2
SE, standard error. All women. Block 1: Total R = .07, F(319) = 22.80, p = .00, final model: Total R = .29, F(319) = 21.58, p = .00. Women with a participating partner only. Block 1: 2 2 Total R = .06, F(143) = 4.26, p = .02, final model: Total R = .37, F(143) = 16.12, p = .00. *p ≤ .05. **p ≤ .001.
Copyright © 2014 John Wiley & Sons, Ltd.
Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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sexuality and CC. In general, all communication channels were highly endorsed by the women and their partners. The most preferred channels among women however were a website (78%) and verbal information (77%). Among partners, verbal information was most popular (81%) followed by a website (71%). The least supported service (but still endorsed by the majority of the participants) was the provision of an email address for questions about sexual issues (women: 70%, partners: 66%), and a list with contact information of professional healthcare workers (women: 69%, partners: 58%). Lastly, 76% of the women and 65% of the partners considered it desirable that partners are involved in sexual healthcare provision.
Discussion and conclusion The study results show that about half of the CC survivors reported current or past professional healthcare needs for their sexual concerns. In line with other research [16], a large proportion (i.e. approximately two thirds) of these women, however, did not initiate a conversation about sexual functioning with a professional. Prognostic variables of help-seeking intentions were the extent to which women considered sexual functioning important for their quality of life, expecting relief from seeking help, social support and influence with respect to help-seeking (i.e. having a partner or friends who would support women if they were to seek help) and having positive beliefs towards the quality of professional psychosexual support (e.g. believing that professionals offer sufficient time and privacy to discuss sexual issues). Corresponding with other studies [17], embarrassment was negatively associated with help-seeking intention. Surprisingly, the partners’ perceptions with respect to the severity of the sexual dysfunctions and social support were not associated with women’s help-seeking intentions. Lastly, the results show that 83% of the women and 82% of their partners reported a need for information about sexuality and cancer and that the majority would value a website or the provision of verbal information. Preferences with respect to psychosexual support
The finding that a large majority of women and partners would appreciate receiving information about sexuality and CC corresponds with that of other research [17]. In line with other research [26], the need for psychosexual support started from 3 months after treatment until more than a year after treatment. Lastly, our results affirm previous findings [26] that most women and partners considered it desirable that partners were involved in the sexual healthcare and information provision. Limitations and suggestions for further research
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related to help-seeking intentions was relatively low. In addition, three constructs (i.e. embarrassment to seek help, expecting relief from seeking help and avoidance of hospitals) were measured with single items instead of validated scales. Although the items were derived from well-established theories explaining health behaviour and were pilot-tested with respect to their comprehensibility, the use of single items and scales with a relative low internal consistency can compromise the validity and reliability of these measurements. Another issue is that the study design allowed us to gather retrospective data only, which makes it impossible to make causal inferences. Furthermore, studies in sexuality are prone to suffer from selection bias [27], and our study sample might have been overrepresented by women with positive attitudes towards sexuality and sexual healthcare services. Furthermore, qualitative research could complement and deepen the results that were obtained in this study with insights in women’s experiences with psychosexual support, and unmet needs that they possibly experience. Implications for clinical practice
Healthcare professionals need to be aware that many women (regardless of their relational status or age) have a need for information and/or professional care for their sexual concerns. Because our data show that only 39% of the participants thought that they were adequately informed about the consequences of the treatment on their sexual functioning, there seems to be room for improvement. Information and care provision with respect to sexual functioning should start before treatment and continue during follow-up. This study demonstrated differences in the desired timing of the provision of information and support between women who were treated with radiotherapy and women who were not. Furthermore, preferences regarding the content of psychosexual support are likely to differ as well, for instance, as a function of women’s ethnic background. Ethnicity was not measured in this study and would be worth investigating in the future. All in all, a tailored approach with respect to the timing and content of support is recommended. Because our study results clearly showed that beliefs related to the amount of time and privacy professionals offer to discuss sexual concerns are related to helpseeking intentions, a last suggestion for professionals is to allocate sufficient time and privacy to address sexuality. A lack of time to screen women for sexual dysfunctions is however a commonly mentioned barrier by healthcare professionals [28]. Oncology professionals can be trained to provide, even with a small amount of time, basic sexual counselling to patients [29], and McKee and Schover advocate that a very brief Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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assessment of sexual function should be part of initial information gathering for new patients as well as a routine part of a follow-up visit [30]. Having gained more insight in CC survivors’ (and their partners’) psychosexual healthcare needs and help-seeking intentions, it is time for researchers to focus on the development and evaluation of interventions supporting CC survivors’ sexual rehabilitation.
References 1. Benedet JL. Progress in gynecologic cancer detection and treatment. Int J Gynaecol Obstet 2000;70:135–147. 2. Bjelic-Radisic V, Jensen PT, Vlasic KK, et al. Quality of life characteristics in patients with cervical cancer. Eur J Cancer 2012;48: 3009–3018. 3. Vistad I, Fossa SD, Dahl AA. A critical review of patient-rated quality of life studies of long-term survivors of cervical cancer. Gynecol Oncol 2006;102:563–572. 4. Bergmark K, Avall-Lundqvist E, Dickman PW, Henningsohn L, Steineck G. Vaginal changes and sexuality in women with a history of cervical cancer. N Engl J Med 1999;340:1383–1389. 5. Jensen PT, Groenvold M, Klee MC, Thranov I, Petersen MA, Machin D. Early-stage cervical carcinoma, radical hysterectomy, and sexual function. A longitudinal study. Cancer 2004;100:97–106. 6. Lindau ST, Gavrilova N, Anderson D. Sexual morbidity in very long term survivors of vaginal and cervical cancer: a comparison to national norms. Gynecol Oncol 2007;106:413–418. 7. Pieterse QD, Maas CP, ter Kuile MM, et al. An observational longitudinal study to evaluate miction, defecation, and sexual function after radical hysterectomy with pelvic lymphadenectomy for early-stage cervical cancer. Int J Gynecol Cancer 2006;16:1119–1129. 8. Bergmark K, Avall-Lundqvist E, Dickman PW, Henningsohn L, Steineck G. Patient-rating of distressful symptoms after treatment for early cervical cancer. Acta Obstet Gynecol Scand 2002;81:443–450. 9. Abbott-Anderson K, Kwekkeboom KL. A systematic review of sexual concerns reported by gynecological cancer survivors. Gynecol Oncol 2012;124:477–489. 10. Kwekkeboom KL, Abbott-Anderson K, Cherwin C, Roiland R, Serlin RC, Ward SE. Pilot randomized controlled trial of a patient-
11.
12.
13.
14.
15.
16.
17.
18.
19. 20.
Acknowledgements This study was supported by the Dutch Cancer Society (grant no. UL 2010-4760).
Note 1. This only applies to participants in a relationship.
controlled cognitive-behavioral intervention for the pain, fatigue, and sleep disturbance symptom cluster in cancer. J Pain Symptom Manage 2012. Gilbert E, Ussher JM, Hawkins Y. Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer. Health (London) 2009;13:523–541. Carlsen K, Dalton SO, Frederiksen K, Diderichsen F, Johansen C. Are cancer survivors at an increased risk for divorce? A Danish cohort study. Eur J Cancer 2007;43:2093–2099. Flynn P, Kew F, Kisely SR. Interventions for psychosexual dysfunction in women treated for gynaecological malignancy. Cochrane Database Syst Rev 2009. Brotto LA, Yule M, Breckon E. Psychological interventions for the sexual sequelae of cancer: a review of the literature. J Cancer Surviv 2010;4:346–360. Berman L, Berman J, Felder S, et al. Seeking help for sexual function complaints: what gynecologists need to know about the female patient’s experience. Fertil Steril 2003;79:572–576. Hill EK, Sandbo S, Abramsohn E, et al. Assessing gynecologic and breast cancer survivors’ sexual health care needs. Cancer 2011;117:2643–2651. McCallum M, Lefebvre M, Jolicoeur L, Maheu C, Lebel S. Sexual health and gynecological cancer: conceptualizing patient needs and overcoming barriers to seeking and accessing services. J Psychosom Obstet Gynaecol 2012;33:135–142. Godin G, Kok G. The theory of planned behavior: a review of its applications to healthrelated behaviors. Am J Health Promot 1996;11:87–98. Ajzen I.. The theory of planned behavior. Organ Behav Hum Decis Process 1991;50:179–211. Hazewinkel MH, Sprangers MA, TaminiauBloem EF, van der Velden J, Burger MP, Roovers JP. Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer. BJOG 2010;117:39–46.
21. Derogatis LR, Rosen R, Leiblum S, Burnett A, Heiman J. The Female Sexual Distress Scale (FSDS): initial validation of a standardized scale for assessment of sexually related personal distress in women. J Sex Marital Ther 2002;28:317–330. 22. ter Kuile MM, Brauer M, Laan E. De Female Sexual Index (FSFI) en de Female Sexual Distress Scale (FSDS): Psychometrische eigenschappen in een Nederlandse populatie [psychometric properties within a Dutch population]. Tijd Seksuol 2009;33:207–222. 23. Brotto LA, Erskine Y, Carey M, et al. A brief mindfulness-based cognitive behavioral intervention improves sexual functioning versus wait-list control in women treated for gynecologic cancer. Gynecol Oncol 2012;125:320–325. 24. Arrindell WA, Boelens W, Lambert H. On the psychometric properties of the Maudsley Marital Questionnaire (MMQ) – evaluation of self-ratings in distressed and normal volunteer couples based on the Dutch version. Pers Individ Differ 1983;4:293–306. 25. Crowe MJ. Conjoint marital-therapy – controlled outcome study. Psychol Med 1978; 8:623–636. 26. Rasmusson E, Thome B. Women’s wishes and need for knowledge concerning sexuality and relationships in connection with gynecological cancer disease. Sex Disabil 2008; 26:207–218. 27. Strassberg DS, Lowe K. Volunteer bias in sexuality research. Arch Sex Behav 1995;24: 369–382. 28. Pauls RN, Kleeman SD, Segal JL, Silva WA, Goldenhar LM, Karram MM. Practice patterns of physician members of the American Urogynecologic Society regarding female sexual dysfunction: results of a national survey. Int Urogynecol J Pelvic Floor Dysfunct 2005;16:460–467. 29. Carter J, Goldfrank D, Schover LR. Simple strategies for vaginal health promotion in cancer survivors. J Sex Med 2011;8:549–559. 30. McKee AL, Jr., Schover LR. Sexuality rehabilitation. Cancer 2001;92:1008–1012.
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Psycho-Oncology 24: 458–464 (2015) DOI: 10.1002/pon
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