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The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer
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Contents lists available at ScienceDirect
Maturitas journal homepage: www.elsevier.com/locate/maturitas
The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer
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M.S. Hunter a,∗ , C.F. Sharpley b,c , E. Stefanopoulou a , O. Yousaf a , V. Bitsika c , D.R.H. Christie b,d a
Institute of Psychiatry, King’s College London, UK Brain-Behaviour Research Group, University of New England, New South Wales, Australia c Centre for Autism Spectrum Disorders, Bond University, Queensland, Australia d GenesisCare, Queensland, Australia b
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Article history: Received 10 June 2014 Received in revised form 16 September 2014 Accepted 29 September 2014 Available online xxx
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Keywords: Prostate cancer Hot flushes Night sweats Cognitions Behaviour Oncology
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1. Background
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Objective: Hot flushes and night sweats (HFNS) are commonly experienced by men receiving treatment for prostate cancer. Cognitive behavioural therapy (CBT) has been found to be an effective treatment for HFNS in women, but cognitions and behavioural reactions to HFNS in men are under-researched. This study describes the development of the HFNS beliefs and behaviour scale for men. Methods: HFNS beliefs and behaviour items were generated from a qualitative study, from pilot interviews with men with prostate cancer and HFNS, and from scales used for women. 118 men with prostate cancer, aged above 18, English-speaking, who had minimum of seven HFNS weekly for at least 1 month, completed the initial measure, and measures of HFNS frequency, problem rating, anxiety and depression (HADS). Principal components analyses with orthogonal rotation determined the most coherent solution. Results: Exploratory factor analysis culminated in a 17-item HFNS beliefs and behaviour scale for men (HFBBS-Men) with three subscales: (1) HFNS social context and sleep, (2) Calm/Acceptance, (3) Humour/Openness. The subscales had reasonable internal consistency (Cronbach alpha 0.56–0.83). Validity was supported, by correlations between subscale 1, HFNS frequency, problem-rating and mood; men with locally advanced cancer more likely to adopt Calm/Acceptance and those with metastatic cancer Humour/Openness. Conclusions: Preliminary analysis of the HFBBS-Men suggests that it is a psychometrically sound instrument, grounded in men’s experiences. As a measure of cognitive and behavioural reactions to HF/NS, the HFBBS-Men should increase understanding of the mediators of outcomes of psychological interventions, such as CBT. © 2014 Published by Elsevier Ireland Ltd.
Prostate cancer (PCa) is the most common non-dermatological cancer and the second leading cause of cancer-related death in men in the Western world [1]. While the 5-year survival rate in the UK is generally good, PCa survivors face unwanted treatment side effects, which are particularly troublesome following androgen deprivation therapy (ADT) and which can continue for up to 5–8 years [2]. These include hot flushes and night sweats (HFNS),
∗ Corresponding author at: Institute of Psychiatry, King’s College London, Department of Psychology, 5th Floor Bermondsey Wing, Guy’s Hospital, Great Maze Pond, London Bridge, London SE1 9RT, UK. Tel.: +44 0207 188 0189. E-mail address: [email protected] (M.S. Hunter).
gynecomastia, cognitive function, and changes in sexual function [3]. HF/NS are estimated to affect up to 80% of PCa patients [4], and Q3 are associated with distress and reduced quality of life – particularly affecting sleep and physical well-being [5]. The management of these symptoms is problematic; a recent systematic review of treatments for HFNS in PCa patients concluded that few effective and well-tolerated treatments are available, and that a priority should be the development of acceptable treatments that are free from side effects [6]. Cognitive behaviour therapy (CBT) for HFNS has been developed, by Hunter and colleagues, and found to be a safe and effective intervention for women with troublesome HFNS, going through a natural menopause [7] and experiencing HFNS following breast cancer treatments [8,9]. HFNS in men are under researched compared to those experienced by menopausal women or by women following breast cancer
http://dx.doi.org/10.1016/j.maturitas.2014.09.014 0378-5122/© 2014 Published by Elsevier Ireland Ltd.
Please cite this article in press as: Hunter MS, et al. The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer. Maturitas (2014), http://dx.doi.org/10.1016/j.maturitas.2014.09.014
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treatments. However, the available evidence suggests that they are generally similar in terms of mechanisms and physiological correlates. For example, HFNS in both menopausal women and PCa patients are preceded by small increases in core body temperature [10] and sternal skin responses during HFNS are similar in breast and PCa patients with HFNS [11]. For both men and women with HFNS, symptom frequency and problem-rating are not highly associated; in fact it is problem-rating – the extent to which symptoms are bothersome and interfere with life – that is associated with help-seeking and quality of life and is recommended as a primary outcome measure in clinical trials [12,13]. A cognitive model of HFNS has been proposed [14] to understand relationships between cognitive factors, behaviours, mood, attention and personality factors in the perception and appraisal of HFNS experienced by women. The model has been supported by the results of a study showing that beliefs about HFNS were the main predictors of how problematic or bothersome HFNS were rated [15]. Measures of cognitions and behaviours relating to HFNS have been developed for women, i.e. The Hot Flush Beliefs Scale [16] and Hot Flush Behaviour Scales [17]. Changes in these HFNS beliefs and behaviours were found to be the main mediators of improvement in HFNS in two clinical trials of CBT for women [18,19]. We plan to test this cognitive model, as well as develop and evaluate a CBT intervention to help men to manage HFNS while receiving ADT treatment for PCa [20]. However, the first step is to develop measures of HFNS beliefs and behavioural reactions for men with HFNS, comparable to those that have been developed for women [16,17]. Little research has been carried out on appraisals and reactions to HFNS in men with PCa, but one qualitative study of men having ADT [3] found that men reported a lack of control over their HFNS and there was reluctance to disclose the type of symptoms that they experienced to others. In a qualitative study aimed to specifically examine cognitions and behaviours relating to HFNS in men undergoing ADT for PCa [21], five main cognitive appraisals relating to HFNS were identified: changes in oneself, impact on masculinity, embarrassment/social-evaluative concerns, perceived control and acceptance/adjustment. We aimed to build on these findings and devise a psychometrically sound, self-report questionnaire measure that might be used to increase understanding of the factors that influence the experience and impact of HFNS in men. This paper presents: (i) pilot work to develop the Hot Flush Beliefs and Behaviour Scale in Men (HFBBS-Men), and (ii) initial data on its reliability, validity and factor structure.
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We include participants from UK and Australian sites since we aim to take the CBT interventions forward in these centres. This study was funded by the Prostate Cancer Charity and NHS Research Ethics Committee approval granted (South East London 2 REC, ref: 11/LO/1114) and the Uniting Care Human Research Ethics Committee (Brisbane, Australia).
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2. Pilot work
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Potential questionnaire items to measure HFNS beliefs and behavioural reactions were derived from the qualitative study described above [21], which was carried out for this purpose. We also considered items from the scales that exist for the measurement of HFNS beliefs and behaviours for women, i.e. from the Hot Flush Beliefs Scale [16] and the Hot Flush Behaviour Scale [17]. Subscales of these scales for women included: beliefs about the social and interpersonal consequences of experiencing HFNS (e.g. ‘everyone’s looking at me’), beliefs about coping and control (e.g. ‘there’s
nothing I can do to get rid of them’), and beliefs about night sweats and sleep (e.g. ‘if I have a night sweat, I’ll never get back to sleep’). HFNS behavioural subscales included: avoidance (e.g. of social situations and transport), positive behaviours (e.g. calm breathing, humour), and cooling behaviours (e.g. carrying water, fanning one’s self). The initial version of the HFBBS-Men consisted of a total of 40 items reflecting these domains; however, six items were removed due to repetition of items, leaving a 34-item scale. Items were both positively and negatively worded to minimize response bias. Five men (recruited as described in the Methods section below) Q5 with PCa and experiencing HFNS, were asked to read the questionnaire and comment to the researcher while doing so about each item. They also provided specific feedback on a range of factors, including layout, coherence, ambiguity, rating scale preference. The HFBS was subsequently modified to maximize conceptual clarity. Twelve items were dropped (considered less relevant, unclear, or repetitious), and ambiguously worded items were appropriately rewritten, culminating in a 22-item measure that used a six-point response scale: strongly disagree, moderately disagree, mildly disagree, mildly agree, moderately agree, and strongly agree (coded as 1–6). Participants were asked to: “. . . tick the response that best describes the extent to which you agree or disagree with each statement based on your beliefs and reactions to your flushes and sweats in the past two weeks”. The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) included both beliefs and behaviours in one scale because, in our experience of using the HFNS Beliefs and Behaviour Scales for women, social and control beliefs tend to correlate with positive coping behaviours and avoidance; we also felt that a shorter single scale might be easier to use to assess outcomes and mediators in clinical trials.
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3. Factor structure, reliability and validity
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3.1. Participants
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We recruited 118 men from urology and oncology clinics in two centres (London, UK and the Gold Coast, Australia) from large teaching hospitals, using the following inclusion criteria: PCa patients aged above 18, English-speaking, who had a minimum of seven HFNS weekly for at least 1 month. Patients, attending outpatient clinics, were recruited into the study by cancer nurses, radiologists and oncologists; they were provided with study information and consented in the waiting areas, or were contacted by the research team and after completing a telephone-screening interview, they were provided with information and following consent, questionnaires were completed. 3.2. Measures Sociodemographic and clinical data included: age, marital status, cancer type (localized, locally advanced or metastatic), cancer treatments received (prostatectomy, radiotherapy and ADT) and time since PCa diagnosis. Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men): 22 items scale to measure HFNS beliefs and behaviours. HFNS: Self-reported weekly frequency and HFNS problem-rating were assessed using the Hot Flush Rating Scale (HFRS) [22]. HF/NS measures the total number of HF/NS reported in the past week. HFNS problem-rating is the mean of three items (i.e. ‘To what extent do you regard your flushes/sweats as a problem?’, ‘How distressed do you feel about your hot flushes?’, and ‘How much do your hot flushes interfere with your daily routine?’) rated on a
Please cite this article in press as: Hunter MS, et al. The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer. Maturitas (2014), http://dx.doi.org/10.1016/j.maturitas.2014.09.014
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10-point Likert scales where a higher score indicates that the patient views his HF/NS as highly bothersome and interfering with life. The scale has good internal consistency in studies with women (Cronbach alpha = 0.9) and test–retest reliability (r = 0.8). Mood: Anxiety and depressed mood are measured using the 14item Hospital Anxiety and Depression Scale (HADS) [23], which is widely used in cancer populations [24].
3.3. Analysis 3.3.1. Factor analysis of the HFBS A total of 118 men completed the HFBBS-Men as well as the measures described above. The sample size was considered adequate for conducting a factor analysis [25]. After a preliminary item analysis to discard any items, which might show limited variability, exploratory factor analysis was conducted to examine relationships and constructs measured by the HFBBS items, as well as refine and reduce the number of related items to a conceptually clear scale. Principal components analysis was used in the identification of item clusters and factor loadings generated using both orthogonal and oblique rotations to determine the most coherent and interpretable solution. Reliability of subscales was examined using Cronbach alpha coefficients. Concurrent criterion validity of the HFBBS-Men was investigated by correlating the HFBBS scores with relevant measures of mood (HADS) and HFNS frequency and problem-rating, as well as age, time since diagnosis and cancer type (localized, locally advanced and metastatic). It was hypothesized that men who endorsed anxiety and depressed mood (HADS) might express more negative beliefs on the HFBS. It was hypothesized that men with more negative beliefs on the HFBBS would endorse higher problem ratings as measured by the Hot Flush Rating Scale. Analyses were carried out using SPSS 18.0 for Windows.
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4. Results
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4.1. Characteristics of study participants
One hundred and eighteen participants, aged 69.25 (SD = 7.56) years (range 49–85 years), were recruited from urban centres in the UK (n = 70) and Australia (n = 48). The majority were married or 205 living with a partner (98) 83.1%, with fewer widowed (3) 2.5%, sep206 arated/divorced 9 (7.6%) or never married (8) 6.8%. Cancer types 207 included: localized (43) 36.4%; locally advanced (49) 41.5% and 208 metastatic (26) 22.0%. Cancer treatments included surgery (22) 209 18.60% and radiotherapy (78) 66.10%; while the majority (103, 210 87.28%) were having, or had recently had, ADT. Average time since 211 PCa diagnosis was 21.13 (SD = 23.67), range 3–192, months; the 212 majority (86%) were within 3 years of diagnosis. Scores on the 213 HADS were Anxiety Mean 4.61, SD = 3.57 and Depression Mean 214 3.99, SD = 3.36, and those scoring above the clinical cut-off points 215 Q6 (≥8) were broadly similar to rates reported for men with PCa [26]. 216 HFNS frequency and problem-rating scores are shown in Table 1. 217 203 204
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4.2. Factor analysis A total of 22 items were considered; however, one item, ‘other people manage their hot flushes better than I do’, was omitted at this stage because there was a lot of missing data (14 men left this item blank) specifically for this item. Kaiser and Rice’s [27] Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy was 0.75, and Bartlett’s test of sphericity was significant ([2 ] = 858.74, p < 0.0001), thus justifying factor analysis with these data [28]. The HFBS responses were analyzed using principal components analysis with Varimax rotation to determine the existence of independent factors [29]. Although an initial seven factor solution was identified, several items had low factor loading scores. The scree plot demonstrated a break in the slope between factors three and four [30]. The analysis was therefore repeated and a three-factor solution was selected, on the basis of (i) eigenvalues >1.0, (ii) scrutiny of the scree test and (iii) parallel analysis, which accounted for 44.72% of the variance (range of eigenvalues 1.64–5.30). The initial number of factors and the break in the scree slope was similar for both UK and Australian subgroups. Three distinct dimensions were obtained based on item content, and were well marked by at least three items each (Table 2). The criterion for inclusion in a factor was set at 0.50, in line with standard recommendations with a sample size of 100 [31]. Factor one accounted for 25.26% of the variance, and consisted of ten items, such as ‘When I have a hot flush, other people will be able to tell that I am unwell’, ‘Having a hot flush makes me feel less masculine’ and ‘When I have night sweats I won’t be able to get back to sleep’ reflecting negative beliefs and behaviours relating to HFNS in social contexts and at night, was entitled HFNS Social/Sleep. Factor two accounted for 11.62% of the variance, and consisted of four items, such as ‘When I have hot flushes or night sweats I try to accept them’, ‘When I have a hot flush, I try to be calm and relaxed’ and ‘At least hot flushes mean that my cancer is being treated’ was entitled Calm/Acceptance. Factor three accounted for 7.84% of the variance and was named Humour/Openness, with three items such as, ‘I use humour to deal with hot flushes’ and ‘I deal with my hot flushes by being open and talking about them with other people’. Four items (items 12, 14, 19 and 20, in Table 2), that either loaded on at least two factors or did not load highly on any factor, were removed. A total of 17 items were retained in the HFBBS-Men, with three subscales based on the factor analysis. The final questionnaire is shown in Appendix 1. The responses to the three subscales were normally distributed. Higher scores on subscale 1 indicate more negative beliefs and behaviours, while higher scores on subscales 2 and 3 represent neutral or positive beliefs and behaviours. Table 3 shows the distribution of responses and means (SD) for the HFBBSMen subscales. Scoring of the 17-item HFBBS-Men is as follows, with each subscale score being between 1 and 6 and numbering referring to the items of the scale in Appendix 1. 1. HFNS Social/Sleep (1 + 2 + 3 + 5 + 6 + 7 + 8 + 9 + 11 + 16)/10 2. Calm/Acceptance (4 + 10 + 12 + 15)/4 3. Openness/Humour (13 + 14 + 17)/3. 4.3. Reliability and validity
Table 1 Hot flush measures of frequency, severity and problem-rating (n = 118), means (SD). Mean (SD)
Range
Hot flush weekly frequency Night sweat weekly frequency
32.37 (28.00) 13.58 (12.65)
7–210 10–70
Total HFNS Frequency HFNS Problem-rating
45.94 (35.96) 4.08 (2.28)
7–280 1–10
Internal consistency was assessed for each separate subscale and Cronbach coefficient alphas are shown in Table 3. These findings indicate that all subscales have reasonable reliability. Those with fewer items had lower reliability as might be expected but were retained because of their conceptual relevance. Pearson correlations between the means of the subscales of the HFBS are reported in Table 4. The subscales were relatively independent, however, there was a small but significant negative association between
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Q9 HFBBS-Men items and factor loadings. Factors
1. When I have night sweats it is harder to cope the next day. 2. I should not have to put up with hot flushes I shouldn’t have them. 3. When I have hot flushes I worry about what other people will think of me 4. At least hot flushes mean that my cancer is being treated 5. Having a hot flush makes me feel less masculine 6. I find my night sweats troublesome to manage 7. When I have a hot flush, I am embarrassed 8. When I have a hot flush, other people will be able to tell that I am unwell 9. When I have night sweats I won’t be able to get back to sleep 10. When I have hot flushes or night sweats I try to accept them 11. Night sweats and disrupted sleep affect my general health 12. I don’t have any control over my hot flushes 13. When I have a hot flush, I try to be calm and relaxed 14. I don’t go out as much now because of hot flushes 15. I use humour to deal with hot flushes 16. I take action to cool down (cold drinks, take off layers) when I have a flush 17. When I have hot flushes, I carry on and ignore them 18. I have to leave or avoid some social situations because of hot flushes 19. I don’t talk about hot flushes and night sweats because people wouldn’t understand 20. I carry things with me (cold drinks, tissues) in case I have a hot flush 21. I deal with my hot flushes by being open and talking about them with other people
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2
3
0.707 0.592 0.638 −0.003 0.679 0.732 0.753 0.661 0.714 0.003 0.718 0.297 .114 0.537 0.013 0.038 −0.098 0.637 0.323 0.096 −0.260
0.044 −0.048 0.162 0.631 0.137 −0.219 0.110 0.072 −0.265 0.513 −0.102 −0.093 .577 0.412 −0.048 −0.410 0.599 0.216 0.051 0.527 −0.062
0.132 0.002 0.007 −0.106 −0.201 0.002 −0.050 −0.075 0.029 −0.409 0.064 0.203 −0.134 −0.109 0.620 0.593 0.126 0.088 0.386 0.556 0.594
Extraction Method: Principal Component Analysis. Rotation Method: Varimax with Kaiser Normalization.
Table 3 Hot Flush Beliefs and Behaviour Scale-Men subscales: Means (SD), range and internal reliability (Cronbach alpha).
HFNS Social/Sleep Calm/Acceptance Openness/Humour
Mean
SD
Range
3.09 2.73 3.84
1.11 0.97 1.23
4.80 4.50 5.00
Min–Max
Cronbach alpha
1.00–5.80 1.00–5.50 1.00–6.00
0.83 0.57 0.57
Table 4 HFBBS subscale inter-correlations and correlations between subscales and HFNS frequency, problem-rating and mood (HADS anxiety and depression). HFNS Social/Sleep HFNS Social/Sleep Calm/Accept Openness/Humour * **
280 281 282 283 284 285 286 287 288 289 290 291 292 293 294 295 296 297 298 299 300 301 302
Calm/Accept
Openness/Humour
HFNS Frequ
HFNS Prob-rating
HADS Anxiety
HADS Dep
0.02
−0.09 −0.28*
0.21* −0.23* −0.04
0.56** −0.07 −0.03
0.50** −0.05 0.05
0.44** 0.01 −0.07
p < 0.05. p < 0.01.
Calm/Acceptance and Humour/Openness suggesting that these are quite different strategies. In term of validity, as hypothesized there were significant associations between negative beliefs about HFNS in social situations and at night (subscale 1) and higher frequency and problem rating scores on the HFRS. As hypothesized, there were significant positive correlations between HADS anxiety and depressed mood and subscale 1, reflecting negative beliefs and behaviours about HF and NS. No other relationships between subscales and HFNS or HADS measures were significant, apart from a negative association between more frequent HFNS and lower scores of Calm/Acceptance (subscale 2). Age was not associated with the three subscales, nor was time since prostate cancer diagnosis. However, in terms of cancer type, men who had locally advanced cancer had significantly higher scores on subscale 2, (i.e. they were more likely to report beliefs and behaviours consistent with Calm/Acceptance), than men with diagnoses of localized or metastatic cancer (locally advanced M = 3.17, SD = 0.81 vs. localized M = 2.47, SD = 0.99, t = 3.71, df = 89, p < 0.0001, CI 0.33–1.08; locally advanced M = 3.17, SD = 0.8 vs. metastatic M = 2.27, SD = 0.85, t = 4.48, df = 72, p < 0.0001, CI 0.50–1.31). In addition, men with metastatic cancer (M = 4.41 SD = 1.17) were more likely to use Humour/Openness (subscale 3) compared to men
with locally advanced cancer (M = 3.56 SD = 1.17), t = −2.96 df = 72 p < 0.004 CI −0.85 to −1.42. No other associations were significant. 5. Discussion In this study, we examined HFNS cognitive appraisals and behavioural strategies used by men with PCa and devised a psychometrically sound measure to assess these beliefs and behaviours. Principal components analysis of initial HFBBS-Men items followed by an examination of eigenvalues >1 and the scree test indicated a three-factor solution. The content of these factors suggested that the HFBBS was measuring dimensions of beliefs and behaviours relating to HFNS in social contexts and at night, calm/acceptance, and Humour/Openness. Internal consistency was high for subscale 1, and moderate for subscales 2 and 3, which contained fewer items. The main subscale 1 is similar to two main subscales for women with HFNS [16,17], in that it contains items that reflect embarrassment and concern about what other people might think when the respondent is having a flush, as well as appraisal of night sweats being hard to manage and impacting on health, coping the next day and getting back to sleep. The items differed from the women’s scales in the inclusion of two additional social items: ‘when I have a hot flush people will think that I am unwell’ and ‘having a hot flush
Please cite this article in press as: Hunter MS, et al. The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer. Maturitas (2014), http://dx.doi.org/10.1016/j.maturitas.2014.09.014
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makes me feel less masculine’, which might reflect social stigma associated with ill health and concerns about threats to masculinity. Men with PCa are older, average age 69 years in this study, compared to menopausal women who tend to be in their fifties, and women with HFNS following breast cancer treatment tend to be in remission, while 64% of the current sample of PCa patients were having cancer treatment, and 22% had been diagnosed with metastatic cancer. Their concern about their illness being exposed to others by their HFNS might reflect difficulty in dealing with their illness in general, possibly stigma about a cancer diagnosis or not knowing how to answer questions from other people [21]. Concerns about masculinity are common amongst men with PCa, for whom sexual problems and gynecomastia are treatment side effects [3,32–34], and there is evidence suggesting that this is particularly the case for younger men following radical prostatectomy [35]. For both the current sample and for women with HFNS, embarrassment and concern about hot flushes in social situations is associated with ‘having to leave or avoid social situations because of hot flushes’. As is the case for anxiety, overly negative or in some cases ‘catastrophic’ beliefs about the consequences of HFNS can lead to behavioural avoidance [17]. The second subscale (Calm/Acceptance) included cognitive and behavioural items, such as ‘when I have HFNS I try to accept them’, and ‘when I have a hot flush I try to be calm and relaxed’, and ‘when I have hot flushes I carry on and ignore them’, as well as ‘at least hot flushes mean that my cancer is being treated’. These appear to be positive accepting appraisals and strategies, similar to a subscale of the women’s Hot Flush behaviour Scale [17], apart from the additional meaning of HFNS signifying that a treatment is having an impact. In contrast the third subscale reflects more active behavioural strategies, such as use of humour, taking active steps to cool down and talking to people openly about HFNS. Humour was often reported by men in our pilot work and in the qualitative study [21] in order to deal with potentially distressing HFNS and health problems, as well as interpersonal situations. These two subscales were negatively correlated suggesting that they tap into different types of reactions. Correlational analyses demonstrated relationships in the expected directions between subscale 1 of the HFBBS-Men and measures of frequency and problem-rating of HFNS and mood. These results are consistent with research on women with HFNS, showing that anxiety and depressed mood are associated with negative beliefs about hot flushes in social situations and about night sweats and sleep, which also predict HFNS problem-rating [15]. These findings suggest that the cognitive model of HFNS [14] may be applicable to men, in that that the experience of HFNS might activate cognitive, behavioural and affective systems, and that men’s beliefs and behaviours may have a role in maintaining or exacerbating HFNS. However, the direction of causality cannot be concluded from this cross-sectional study. Subscales 2 and 3 reflected beliefs and behavioural strategies that were not associated with mood or HFNS problem-rating. However, an attitude of Calm/Acceptance was less likely to be present when HFNS were more frequent. Further research is needed to understand the impact of Calm/Acceptance and Humour/Openness as strategies, whether they are helpful or less helpful, and whether they might serve as moderators of psychological interventions, such as CBT [18,19]. When we examined age and clinical factors, scores on the HFBBS-Men did not vary with age or time since diagnosis; however there were differences in cognitive appraisals of HFNS and behavioural reactions depending on cancer type or stage. Calm/Acceptance was more likely to be adopted by men with locally advanced cancer than by those with localized or metastatic cancer. This subscale includes an item ‘at least hot flushes mean that my cancer is being treated’, so having HFNS in the context of active treatment might render them more acceptable if they signify that
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treatment is working. Interestingly, men with metastatic cancer were more likely to use humour and openness than men with localized or locally advanced cancer. Although the HFNS beliefs were not associated with time since diagnosis, men with metastatic cancer are likely to be dealing and adapting to a more complex process of symptoms and bodily changes [35] which could render HFNS as relatively less troublesome. Using humour and openness can be a helpful strategy to maintain well being and access social support [36]. Overall, the results suggest that the main set of beliefs and behaviours for men that might have more theoretical and clinical relevance are likely to be those measured by subscale1, comprising negative beliefs about HFNS, which also have high internal reliability and associations with HFNS measures. A particular strength of the HFBBS-Men is its high content and face validity; specified beliefs and behaviours were generated from a variety of sources enabling it to be firmly grounded in men’s experiences. The HFBBSMen was validated on samples that reflected the population for whom the measure was intended. The participants were typical of men with prostate cancer and HFNS in the UK and Australian centres sampled, including men with localized, locally advanced, and metastatic cancer. Cancer treatments received included surgery and radiotherapy and the majority were having ADT; all men had HFNS and we can assume that for those not currently having ADT that their HFNS were caused by prior surgery or ADT, given that HFNS can continue even after treatments have stopped [2,6]. The HFNS scores reflected a range of severity as measured by frequency and problem-rating of HFNS. The percentages of men scoring within the clinical range for depression and anxiety (HADS) were 15% and 20%, respectively, which are similar to those reported in a recent meta-analysis of prevalence of anxiety and depression (13/27 studies reported HADS data) in men with PCa [26] and to an Australian sample of men with PCa [37], where they are four to five times higher than the national average [38]. Receiving a diagnosis of PCa is often stressful [40], and, while depression tends to peak within the first 3 months, it can fluctuate across the 3 years following diagnosis [40]. In a survey of the supportive care needs of men living with PCa, the areas of greatest need were psychological distress, sexuality related issues and urinary tract symptoms [34]; the results of this study suggest strong associations between depressed mood, anxiety and negative HFNS beliefs and behaviours, factors which can impact on the experience of HFNS, which are one of the most common treatment side effects. Further research is needed to replicate these findings, with larger, socially and ethnically diverse samples; confirmatory factor analysis might be applied to test specific hypotheses about the relationship of beliefs and behaviours to the experience of HFNS.
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The HFBBS-Men was developed to assess men’s cognitive appraisals (beliefs) of and behaviours to their HFNS. Preliminary analyses indicate that this reliable and valid measure could contribute to an increased understanding of their experience of HFNS, help delineate reasons for individual differences in response to these symptoms, and both inform and evaluate psychological interventions to alleviate HFNS. Contributors MSH designed the study, carried out the analysis and wrote the paper; CFS contributed to the analysis and final draft, ES and OY conducted the pilot study and collected and coded data, VB and DRH collected and coded data, and contributed to the final draft.
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Competing interest The authors have no conflicts of interest Funding This study was funded by the Prostate Cancer Charity. Ethics NHS Research Ethics Committee approval granted (South East London 2 REC, ref: 11/LO/1114) and the Uniting Care Human Research Ethics Committee (Brisbane, Australia). Uncited reference [39]. Appendix 1. HFNS Beliefs and Behaviour Scale for Men (HFBBS-Men) This questionnaire lists beliefs about hot flushes and night sweats. Please tick the response that best describes how much you agree or disagree with each statement based on your beliefs and reactions to your flushes and sweats in the past 2 weeks. There are no right or wrong answers. Strongly disagree
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1. When I have night sweats it is harder to cope the next day. 2. I should not have to put up with hot flushes I shouldn’t have them. 3. When I have hot flushes I worry about what other people will think of me 4. At least hot flushes mean that my cancer is being treated 5. Having a hot flush makes me feel less masculine 6. I find my night sweats troublesome to manage 7. When I have a hot flush, I am embarrassed 8. When I have a hot flush, other people will be able to tell that I am unwell 9. When I have night sweats I won’t be able to get back to sleep 10. When I have hot flushes or night sweats I try to accept them 11. Night sweats and disrupted sleep affect my general health 12. When I have a hot flush, I try to be calm and relaxed 13. I use humour to deal with hot flushes 14. I take action to cool down (cold drinks, take off layers) when I have a flush 15. When I have hot flushes, I carry on and ignore them 16. I have to leave or avoid some social situations because of hot flushes 17. I deal with my hot flushes by being open and talking about them with other people
Moderately disagree
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Contents lists available at ScienceDirect
Maturitas journal homepage: www.elsevier.com/locate/maturitas
The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) undergoing treatment for prostate cancer
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M.S. Hunter a,∗ , C.F. Sharpley b,c , E. Stefanopoulou a , O. Yousaf a , V. Bitsika c , D.R.H. Christie b,d a
Institute of Psychiatry, King’s College London, UK Brain-Behaviour Research Group, University of New England, New South Wales, Australia c Centre for Autism Spectrum Disorders, Bond University, Queensland, Australia d GenesisCare, Queensland, Australia b
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Article history: Received 10 June 2014 Received in revised form 16 September 2014 Accepted 29 September 2014 Available online xxx
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Keywords: Prostate cancer Hot flushes Night sweats Cognitions Behaviour Oncology
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1. Background
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Objective: Hot flushes and night sweats (HFNS) are commonly experienced by men receiving treatment for prostate cancer. Cognitive behavioural therapy (CBT) has been found to be an effective treatment for HFNS in women, but cognitions and behavioural reactions to HFNS in men are under-researched. This study describes the development of the HFNS beliefs and behaviour scale for men. Methods: HFNS beliefs and behaviour items were generated from a qualitative study, from pilot interviews with men with prostate cancer and HFNS, and from scales used for women. 118 men with prostate cancer, aged above 18, English-speaking, who had minimum of seven HFNS weekly for at least 1 month, completed the initial measure, and measures of HFNS frequency, problem rating, anxiety and depression (HADS). Principal components analyses with orthogonal rotation determined the most coherent solution. Results: Exploratory factor analysis culminated in a 17-item HFNS beliefs and behaviour scale for men (HFBBS-Men) with three subscales: (1) HFNS social context and sleep, (2) Calm/Acceptance, (3) Humour/Openness. The subscales had reasonable internal consistency (Cronbach alpha 0.56–0.83). Validity was supported, by correlations between subscale 1, HFNS frequency, problem-rating and mood; men with locally advanced cancer more likely to adopt Calm/Acceptance and those with metastatic cancer Humour/Openness. Conclusions: Preliminary analysis of the HFBBS-Men suggests that it is a psychometrically sound instrument, grounded in men’s experiences. As a measure of cognitive and behavioural reactions to HF/NS, the HFBBS-Men should increase understanding of the mediators of outcomes of psychological interventions, such as CBT. © 2014 Published by Elsevier Ireland Ltd.
Prostate cancer (PCa) is the most common non-dermatological cancer and the second leading cause of cancer-related death in men in the Western world [1]. While the 5-year survival rate in the UK is generally good, PCa survivors face unwanted treatment side effects, which are particularly troublesome following androgen deprivation therapy (ADT) and which can continue for up to 5–8 years [2]. These include hot flushes and night sweats (HFNS),
∗ Corresponding author at: Institute of Psychiatry, King’s College London, Department of Psychology, 5th Floor Bermondsey Wing, Guy’s Hospital, Great Maze Pond, London Bridge, London SE1 9RT, UK. Tel.: +44 0207 188 0189. E-mail address: [email protected] (M.S. Hunter).
gynecomastia, cognitive function, and changes in sexual function [3]. HF/NS are estimated to affect up to 80% of PCa patients [4], and Q3 are associated with distress and reduced quality of life – particularly affecting sleep and physical well-being [5]. The management of these symptoms is problematic; a recent systematic review of treatments for HFNS in PCa patients concluded that few effective and well-tolerated treatments are available, and that a priority should be the development of acceptable treatments that are free from side effects [6]. Cognitive behaviour therapy (CBT) for HFNS has been developed, by Hunter and colleagues, and found to be a safe and effective intervention for women with troublesome HFNS, going through a natural menopause [7] and experiencing HFNS following breast cancer treatments [8,9]. HFNS in men are under researched compared to those experienced by menopausal women or by women following breast cancer
http://dx.doi.org/10.1016/j.maturitas.2014.09.014 0378-5122/© 2014 Published by Elsevier Ireland Ltd.
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treatments. However, the available evidence suggests that they are generally similar in terms of mechanisms and physiological correlates. For example, HFNS in both menopausal women and PCa patients are preceded by small increases in core body temperature [10] and sternal skin responses during HFNS are similar in breast and PCa patients with HFNS [11]. For both men and women with HFNS, symptom frequency and problem-rating are not highly associated; in fact it is problem-rating – the extent to which symptoms are bothersome and interfere with life – that is associated with help-seeking and quality of life and is recommended as a primary outcome measure in clinical trials [12,13]. A cognitive model of HFNS has been proposed [14] to understand relationships between cognitive factors, behaviours, mood, attention and personality factors in the perception and appraisal of HFNS experienced by women. The model has been supported by the results of a study showing that beliefs about HFNS were the main predictors of how problematic or bothersome HFNS were rated [15]. Measures of cognitions and behaviours relating to HFNS have been developed for women, i.e. The Hot Flush Beliefs Scale [16] and Hot Flush Behaviour Scales [17]. Changes in these HFNS beliefs and behaviours were found to be the main mediators of improvement in HFNS in two clinical trials of CBT for women [18,19]. We plan to test this cognitive model, as well as develop and evaluate a CBT intervention to help men to manage HFNS while receiving ADT treatment for PCa [20]. However, the first step is to develop measures of HFNS beliefs and behavioural reactions for men with HFNS, comparable to those that have been developed for women [16,17]. Little research has been carried out on appraisals and reactions to HFNS in men with PCa, but one qualitative study of men having ADT [3] found that men reported a lack of control over their HFNS and there was reluctance to disclose the type of symptoms that they experienced to others. In a qualitative study aimed to specifically examine cognitions and behaviours relating to HFNS in men undergoing ADT for PCa [21], five main cognitive appraisals relating to HFNS were identified: changes in oneself, impact on masculinity, embarrassment/social-evaluative concerns, perceived control and acceptance/adjustment. We aimed to build on these findings and devise a psychometrically sound, self-report questionnaire measure that might be used to increase understanding of the factors that influence the experience and impact of HFNS in men. This paper presents: (i) pilot work to develop the Hot Flush Beliefs and Behaviour Scale in Men (HFBBS-Men), and (ii) initial data on its reliability, validity and factor structure.
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We include participants from UK and Australian sites since we aim to take the CBT interventions forward in these centres. This study was funded by the Prostate Cancer Charity and NHS Research Ethics Committee approval granted (South East London 2 REC, ref: 11/LO/1114) and the Uniting Care Human Research Ethics Committee (Brisbane, Australia).
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Potential questionnaire items to measure HFNS beliefs and behavioural reactions were derived from the qualitative study described above [21], which was carried out for this purpose. We also considered items from the scales that exist for the measurement of HFNS beliefs and behaviours for women, i.e. from the Hot Flush Beliefs Scale [16] and the Hot Flush Behaviour Scale [17]. Subscales of these scales for women included: beliefs about the social and interpersonal consequences of experiencing HFNS (e.g. ‘everyone’s looking at me’), beliefs about coping and control (e.g. ‘there’s
nothing I can do to get rid of them’), and beliefs about night sweats and sleep (e.g. ‘if I have a night sweat, I’ll never get back to sleep’). HFNS behavioural subscales included: avoidance (e.g. of social situations and transport), positive behaviours (e.g. calm breathing, humour), and cooling behaviours (e.g. carrying water, fanning one’s self). The initial version of the HFBBS-Men consisted of a total of 40 items reflecting these domains; however, six items were removed due to repetition of items, leaving a 34-item scale. Items were both positively and negatively worded to minimize response bias. Five men (recruited as described in the Methods section below) Q5 with PCa and experiencing HFNS, were asked to read the questionnaire and comment to the researcher while doing so about each item. They also provided specific feedback on a range of factors, including layout, coherence, ambiguity, rating scale preference. The HFBS was subsequently modified to maximize conceptual clarity. Twelve items were dropped (considered less relevant, unclear, or repetitious), and ambiguously worded items were appropriately rewritten, culminating in a 22-item measure that used a six-point response scale: strongly disagree, moderately disagree, mildly disagree, mildly agree, moderately agree, and strongly agree (coded as 1–6). Participants were asked to: “. . . tick the response that best describes the extent to which you agree or disagree with each statement based on your beliefs and reactions to your flushes and sweats in the past two weeks”. The Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men) included both beliefs and behaviours in one scale because, in our experience of using the HFNS Beliefs and Behaviour Scales for women, social and control beliefs tend to correlate with positive coping behaviours and avoidance; we also felt that a shorter single scale might be easier to use to assess outcomes and mediators in clinical trials.
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We recruited 118 men from urology and oncology clinics in two centres (London, UK and the Gold Coast, Australia) from large teaching hospitals, using the following inclusion criteria: PCa patients aged above 18, English-speaking, who had a minimum of seven HFNS weekly for at least 1 month. Patients, attending outpatient clinics, were recruited into the study by cancer nurses, radiologists and oncologists; they were provided with study information and consented in the waiting areas, or were contacted by the research team and after completing a telephone-screening interview, they were provided with information and following consent, questionnaires were completed. 3.2. Measures Sociodemographic and clinical data included: age, marital status, cancer type (localized, locally advanced or metastatic), cancer treatments received (prostatectomy, radiotherapy and ADT) and time since PCa diagnosis. Hot Flush Beliefs and Behaviour Scale for Men (HFBBS-Men): 22 items scale to measure HFNS beliefs and behaviours. HFNS: Self-reported weekly frequency and HFNS problem-rating were assessed using the Hot Flush Rating Scale (HFRS) [22]. HF/NS measures the total number of HF/NS reported in the past week. HFNS problem-rating is the mean of three items (i.e. ‘To what extent do you regard your flushes/sweats as a problem?’, ‘How distressed do you feel about your hot flushes?’, and ‘How much do your hot flushes interfere with your daily routine?’) rated on a
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10-point Likert scales where a higher score indicates that the patient views his HF/NS as highly bothersome and interfering with life. The scale has good internal consistency in studies with women (Cronbach alpha = 0.9) and test–retest reliability (r = 0.8). Mood: Anxiety and depressed mood are measured using the 14item Hospital Anxiety and Depression Scale (HADS) [23], which is widely used in cancer populations [24].
3.3. Analysis 3.3.1. Factor analysis of the HFBS A total of 118 men completed the HFBBS-Men as well as the measures described above. The sample size was considered adequate for conducting a factor analysis [25]. After a preliminary item analysis to discard any items, which might show limited variability, exploratory factor analysis was conducted to examine relationships and constructs measured by the HFBBS items, as well as refine and reduce the number of related items to a conceptually clear scale. Principal components analysis was used in the identification of item clusters and factor loadings generated using both orthogonal and oblique rotations to determine the most coherent and interpretable solution. Reliability of subscales was examined using Cronbach alpha coefficients. Concurrent criterion validity of the HFBBS-Men was investigated by correlating the HFBBS scores with relevant measures of mood (HADS) and HFNS frequency and problem-rating, as well as age, time since diagnosis and cancer type (localized, locally advanced and metastatic). It was hypothesized that men who endorsed anxiety and depressed mood (HADS) might express more negative beliefs on the HFBS. It was hypothesized that men with more negative beliefs on the HFBBS would endorse higher problem ratings as measured by the Hot Flush Rating Scale. Analyses were carried out using SPSS 18.0 for Windows.
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4.1. Characteristics of study participants
One hundred and eighteen participants, aged 69.25 (SD = 7.56) years (range 49–85 years), were recruited from urban centres in the UK (n = 70) and Australia (n = 48). The majority were married or 205 living with a partner (98) 83.1%, with fewer widowed (3) 2.5%, sep206 arated/divorced 9 (7.6%) or never married (8) 6.8%. Cancer types 207 included: localized (43) 36.4%; locally advanced (49) 41.5% and 208 metastatic (26) 22.0%. Cancer treatments included surgery (22) 209 18.60% and radiotherapy (78) 66.10%; while the majority (103, 210 87.28%) were having, or had recently had, ADT. Average time since 211 PCa diagnosis was 21.13 (SD = 23.67), range 3–192, months; the 212 majority (86%) were within 3 years of diagnosis. Scores on the 213 HADS were Anxiety Mean 4.61, SD = 3.57 and Depression Mean 214 3.99, SD = 3.36, and those scoring above the clinical cut-off points 215 Q6 (≥8) were broadly similar to rates reported for men with PCa [26]. 216 HFNS frequency and problem-rating scores are shown in Table 1. 217 203 204
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4.2. Factor analysis A total of 22 items were considered; however, one item, ‘other people manage their hot flushes better than I do’, was omitted at this stage because there was a lot of missing data (14 men left this item blank) specifically for this item. Kaiser and Rice’s [27] Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy was 0.75, and Bartlett’s test of sphericity was significant ([2 ] = 858.74, p < 0.0001), thus justifying factor analysis with these data [28]. The HFBS responses were analyzed using principal components analysis with Varimax rotation to determine the existence of independent factors [29]. Although an initial seven factor solution was identified, several items had low factor loading scores. The scree plot demonstrated a break in the slope between factors three and four [30]. The analysis was therefore repeated and a three-factor solution was selected, on the basis of (i) eigenvalues >1.0, (ii) scrutiny of the scree test and (iii) parallel analysis, which accounted for 44.72% of the variance (range of eigenvalues 1.64–5.30). The initial number of factors and the break in the scree slope was similar for both UK and Australian subgroups. Three distinct dimensions were obtained based on item content, and were well marked by at least three items each (Table 2). The criterion for inclusion in a factor was set at 0.50, in line with standard recommendations with a sample size of 100 [31]. Factor one accounted for 25.26% of the variance, and consisted of ten items, such as ‘When I have a hot flush, other people will be able to tell that I am unwell’, ‘Having a hot flush makes me feel less masculine’ and ‘When I have night sweats I won’t be able to get back to sleep’ reflecting negative beliefs and behaviours relating to HFNS in social contexts and at night, was entitled HFNS Social/Sleep. Factor two accounted for 11.62% of the variance, and consisted of four items, such as ‘When I have hot flushes or night sweats I try to accept them’, ‘When I have a hot flush, I try to be calm and relaxed’ and ‘At least hot flushes mean that my cancer is being treated’ was entitled Calm/Acceptance. Factor three accounted for 7.84% of the variance and was named Humour/Openness, with three items such as, ‘I use humour to deal with hot flushes’ and ‘I deal with my hot flushes by being open and talking about them with other people’. Four items (items 12, 14, 19 and 20, in Table 2), that either loaded on at least two factors or did not load highly on any factor, were removed. A total of 17 items were retained in the HFBBS-Men, with three subscales based on the factor analysis. The final questionnaire is shown in Appendix 1. The responses to the three subscales were normally distributed. Higher scores on subscale 1 indicate more negative beliefs and behaviours, while higher scores on subscales 2 and 3 represent neutral or positive beliefs and behaviours. Table 3 shows the distribution of responses and means (SD) for the HFBBSMen subscales. Scoring of the 17-item HFBBS-Men is as follows, with each subscale score being between 1 and 6 and numbering referring to the items of the scale in Appendix 1. 1. HFNS Social/Sleep (1 + 2 + 3 + 5 + 6 + 7 + 8 + 9 + 11 + 16)/10 2. Calm/Acceptance (4 + 10 + 12 + 15)/4 3. Openness/Humour (13 + 14 + 17)/3. 4.3. Reliability and validity
Table 1 Hot flush measures of frequency, severity and problem-rating (n = 118), means (SD). Mean (SD)
Range
Hot flush weekly frequency Night sweat weekly frequency
32.37 (28.00) 13.58 (12.65)
7–210 10–70
Total HFNS Frequency HFNS Problem-rating
45.94 (35.96) 4.08 (2.28)
7–280 1–10
Internal consistency was assessed for each separate subscale and Cronbach coefficient alphas are shown in Table 3. These findings indicate that all subscales have reasonable reliability. Those with fewer items had lower reliability as might be expected but were retained because of their conceptual relevance. Pearson correlations between the means of the subscales of the HFBS are reported in Table 4. The subscales were relatively independent, however, there was a small but significant negative association between
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Q9 HFBBS-Men items and factor loadings. Factors
1. When I have night sweats it is harder to cope the next day. 2. I should not have to put up with hot flushes I shouldn’t have them. 3. When I have hot flushes I worry about what other people will think of me 4. At least hot flushes mean that my cancer is being treated 5. Having a hot flush makes me feel less masculine 6. I find my night sweats troublesome to manage 7. When I have a hot flush, I am embarrassed 8. When I have a hot flush, other people will be able to tell that I am unwell 9. When I have night sweats I won’t be able to get back to sleep 10. When I have hot flushes or night sweats I try to accept them 11. Night sweats and disrupted sleep affect my general health 12. I don’t have any control over my hot flushes 13. When I have a hot flush, I try to be calm and relaxed 14. I don’t go out as much now because of hot flushes 15. I use humour to deal with hot flushes 16. I take action to cool down (cold drinks, take off layers) when I have a flush 17. When I have hot flushes, I carry on and ignore them 18. I have to leave or avoid some social situations because of hot flushes 19. I don’t talk about hot flushes and night sweats because people wouldn’t understand 20. I carry things with me (cold drinks, tissues) in case I have a hot flush 21. I deal with my hot flushes by being open and talking about them with other people
1
2
3
0.707 0.592 0.638 −0.003 0.679 0.732 0.753 0.661 0.714 0.003 0.718 0.297 .114 0.537 0.013 0.038 −0.098 0.637 0.323 0.096 −0.260
0.044 −0.048 0.162 0.631 0.137 −0.219 0.110 0.072 −0.265 0.513 −0.102 −0.093 .577 0.412 −0.048 −0.410 0.599 0.216 0.051 0.527 −0.062
0.132 0.002 0.007 −0.106 −0.201 0.002 −0.050 −0.075 0.029 −0.409 0.064 0.203 −0.134 −0.109 0.620 0.593 0.126 0.088 0.386 0.556 0.594
Extraction Method: Principal Component Analysis. Rotation Method: Varimax with Kaiser Normalization.
Table 3 Hot Flush Beliefs and Behaviour Scale-Men subscales: Means (SD), range and internal reliability (Cronbach alpha).
HFNS Social/Sleep Calm/Acceptance Openness/Humour
Mean
SD
Range
3.09 2.73 3.84
1.11 0.97 1.23
4.80 4.50 5.00
Min–Max
Cronbach alpha
1.00–5.80 1.00–5.50 1.00–6.00
0.83 0.57 0.57
Table 4 HFBBS subscale inter-correlations and correlations between subscales and HFNS frequency, problem-rating and mood (HADS anxiety and depression). HFNS Social/Sleep HFNS Social/Sleep Calm/Accept Openness/Humour * **
280 281 282 283 284 285 286 287 288 289 290 291 292 293 294 295 296 297 298 299 300 301 302
Calm/Accept
Openness/Humour
HFNS Frequ
HFNS Prob-rating
HADS Anxiety
HADS Dep
0.02
−0.09 −0.28*
0.21* −0.23* −0.04
0.56** −0.07 −0.03
0.50** −0.05 0.05
0.44** 0.01 −0.07
p < 0.05. p < 0.01.
Calm/Acceptance and Humour/Openness suggesting that these are quite different strategies. In term of validity, as hypothesized there were significant associations between negative beliefs about HFNS in social situations and at night (subscale 1) and higher frequency and problem rating scores on the HFRS. As hypothesized, there were significant positive correlations between HADS anxiety and depressed mood and subscale 1, reflecting negative beliefs and behaviours about HF and NS. No other relationships between subscales and HFNS or HADS measures were significant, apart from a negative association between more frequent HFNS and lower scores of Calm/Acceptance (subscale 2). Age was not associated with the three subscales, nor was time since prostate cancer diagnosis. However, in terms of cancer type, men who had locally advanced cancer had significantly higher scores on subscale 2, (i.e. they were more likely to report beliefs and behaviours consistent with Calm/Acceptance), than men with diagnoses of localized or metastatic cancer (locally advanced M = 3.17, SD = 0.81 vs. localized M = 2.47, SD = 0.99, t = 3.71, df = 89, p < 0.0001, CI 0.33–1.08; locally advanced M = 3.17, SD = 0.8 vs. metastatic M = 2.27, SD = 0.85, t = 4.48, df = 72, p < 0.0001, CI 0.50–1.31). In addition, men with metastatic cancer (M = 4.41 SD = 1.17) were more likely to use Humour/Openness (subscale 3) compared to men
with locally advanced cancer (M = 3.56 SD = 1.17), t = −2.96 df = 72 p < 0.004 CI −0.85 to −1.42. No other associations were significant. 5. Discussion In this study, we examined HFNS cognitive appraisals and behavioural strategies used by men with PCa and devised a psychometrically sound measure to assess these beliefs and behaviours. Principal components analysis of initial HFBBS-Men items followed by an examination of eigenvalues >1 and the scree test indicated a three-factor solution. The content of these factors suggested that the HFBBS was measuring dimensions of beliefs and behaviours relating to HFNS in social contexts and at night, calm/acceptance, and Humour/Openness. Internal consistency was high for subscale 1, and moderate for subscales 2 and 3, which contained fewer items. The main subscale 1 is similar to two main subscales for women with HFNS [16,17], in that it contains items that reflect embarrassment and concern about what other people might think when the respondent is having a flush, as well as appraisal of night sweats being hard to manage and impacting on health, coping the next day and getting back to sleep. The items differed from the women’s scales in the inclusion of two additional social items: ‘when I have a hot flush people will think that I am unwell’ and ‘having a hot flush
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makes me feel less masculine’, which might reflect social stigma associated with ill health and concerns about threats to masculinity. Men with PCa are older, average age 69 years in this study, compared to menopausal women who tend to be in their fifties, and women with HFNS following breast cancer treatment tend to be in remission, while 64% of the current sample of PCa patients were having cancer treatment, and 22% had been diagnosed with metastatic cancer. Their concern about their illness being exposed to others by their HFNS might reflect difficulty in dealing with their illness in general, possibly stigma about a cancer diagnosis or not knowing how to answer questions from other people [21]. Concerns about masculinity are common amongst men with PCa, for whom sexual problems and gynecomastia are treatment side effects [3,32–34], and there is evidence suggesting that this is particularly the case for younger men following radical prostatectomy [35]. For both the current sample and for women with HFNS, embarrassment and concern about hot flushes in social situations is associated with ‘having to leave or avoid social situations because of hot flushes’. As is the case for anxiety, overly negative or in some cases ‘catastrophic’ beliefs about the consequences of HFNS can lead to behavioural avoidance [17]. The second subscale (Calm/Acceptance) included cognitive and behavioural items, such as ‘when I have HFNS I try to accept them’, and ‘when I have a hot flush I try to be calm and relaxed’, and ‘when I have hot flushes I carry on and ignore them’, as well as ‘at least hot flushes mean that my cancer is being treated’. These appear to be positive accepting appraisals and strategies, similar to a subscale of the women’s Hot Flush behaviour Scale [17], apart from the additional meaning of HFNS signifying that a treatment is having an impact. In contrast the third subscale reflects more active behavioural strategies, such as use of humour, taking active steps to cool down and talking to people openly about HFNS. Humour was often reported by men in our pilot work and in the qualitative study [21] in order to deal with potentially distressing HFNS and health problems, as well as interpersonal situations. These two subscales were negatively correlated suggesting that they tap into different types of reactions. Correlational analyses demonstrated relationships in the expected directions between subscale 1 of the HFBBS-Men and measures of frequency and problem-rating of HFNS and mood. These results are consistent with research on women with HFNS, showing that anxiety and depressed mood are associated with negative beliefs about hot flushes in social situations and about night sweats and sleep, which also predict HFNS problem-rating [15]. These findings suggest that the cognitive model of HFNS [14] may be applicable to men, in that that the experience of HFNS might activate cognitive, behavioural and affective systems, and that men’s beliefs and behaviours may have a role in maintaining or exacerbating HFNS. However, the direction of causality cannot be concluded from this cross-sectional study. Subscales 2 and 3 reflected beliefs and behavioural strategies that were not associated with mood or HFNS problem-rating. However, an attitude of Calm/Acceptance was less likely to be present when HFNS were more frequent. Further research is needed to understand the impact of Calm/Acceptance and Humour/Openness as strategies, whether they are helpful or less helpful, and whether they might serve as moderators of psychological interventions, such as CBT [18,19]. When we examined age and clinical factors, scores on the HFBBS-Men did not vary with age or time since diagnosis; however there were differences in cognitive appraisals of HFNS and behavioural reactions depending on cancer type or stage. Calm/Acceptance was more likely to be adopted by men with locally advanced cancer than by those with localized or metastatic cancer. This subscale includes an item ‘at least hot flushes mean that my cancer is being treated’, so having HFNS in the context of active treatment might render them more acceptable if they signify that
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treatment is working. Interestingly, men with metastatic cancer were more likely to use humour and openness than men with localized or locally advanced cancer. Although the HFNS beliefs were not associated with time since diagnosis, men with metastatic cancer are likely to be dealing and adapting to a more complex process of symptoms and bodily changes [35] which could render HFNS as relatively less troublesome. Using humour and openness can be a helpful strategy to maintain well being and access social support [36]. Overall, the results suggest that the main set of beliefs and behaviours for men that might have more theoretical and clinical relevance are likely to be those measured by subscale1, comprising negative beliefs about HFNS, which also have high internal reliability and associations with HFNS measures. A particular strength of the HFBBS-Men is its high content and face validity; specified beliefs and behaviours were generated from a variety of sources enabling it to be firmly grounded in men’s experiences. The HFBBSMen was validated on samples that reflected the population for whom the measure was intended. The participants were typical of men with prostate cancer and HFNS in the UK and Australian centres sampled, including men with localized, locally advanced, and metastatic cancer. Cancer treatments received included surgery and radiotherapy and the majority were having ADT; all men had HFNS and we can assume that for those not currently having ADT that their HFNS were caused by prior surgery or ADT, given that HFNS can continue even after treatments have stopped [2,6]. The HFNS scores reflected a range of severity as measured by frequency and problem-rating of HFNS. The percentages of men scoring within the clinical range for depression and anxiety (HADS) were 15% and 20%, respectively, which are similar to those reported in a recent meta-analysis of prevalence of anxiety and depression (13/27 studies reported HADS data) in men with PCa [26] and to an Australian sample of men with PCa [37], where they are four to five times higher than the national average [38]. Receiving a diagnosis of PCa is often stressful [40], and, while depression tends to peak within the first 3 months, it can fluctuate across the 3 years following diagnosis [40]. In a survey of the supportive care needs of men living with PCa, the areas of greatest need were psychological distress, sexuality related issues and urinary tract symptoms [34]; the results of this study suggest strong associations between depressed mood, anxiety and negative HFNS beliefs and behaviours, factors which can impact on the experience of HFNS, which are one of the most common treatment side effects. Further research is needed to replicate these findings, with larger, socially and ethnically diverse samples; confirmatory factor analysis might be applied to test specific hypotheses about the relationship of beliefs and behaviours to the experience of HFNS.
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The HFBBS-Men was developed to assess men’s cognitive appraisals (beliefs) of and behaviours to their HFNS. Preliminary analyses indicate that this reliable and valid measure could contribute to an increased understanding of their experience of HFNS, help delineate reasons for individual differences in response to these symptoms, and both inform and evaluate psychological interventions to alleviate HFNS. Contributors MSH designed the study, carried out the analysis and wrote the paper; CFS contributed to the analysis and final draft, ES and OY conducted the pilot study and collected and coded data, VB and DRH collected and coded data, and contributed to the final draft.
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Competing interest The authors have no conflicts of interest Funding This study was funded by the Prostate Cancer Charity. Ethics NHS Research Ethics Committee approval granted (South East London 2 REC, ref: 11/LO/1114) and the Uniting Care Human Research Ethics Committee (Brisbane, Australia). Uncited reference [39]. Appendix 1. HFNS Beliefs and Behaviour Scale for Men (HFBBS-Men) This questionnaire lists beliefs about hot flushes and night sweats. Please tick the response that best describes how much you agree or disagree with each statement based on your beliefs and reactions to your flushes and sweats in the past 2 weeks. There are no right or wrong answers. Strongly disagree
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References
1. When I have night sweats it is harder to cope the next day. 2. I should not have to put up with hot flushes I shouldn’t have them. 3. When I have hot flushes I worry about what other people will think of me 4. At least hot flushes mean that my cancer is being treated 5. Having a hot flush makes me feel less masculine 6. I find my night sweats troublesome to manage 7. When I have a hot flush, I am embarrassed 8. When I have a hot flush, other people will be able to tell that I am unwell 9. When I have night sweats I won’t be able to get back to sleep 10. When I have hot flushes or night sweats I try to accept them 11. Night sweats and disrupted sleep affect my general health 12. When I have a hot flush, I try to be calm and relaxed 13. I use humour to deal with hot flushes 14. I take action to cool down (cold drinks, take off layers) when I have a flush 15. When I have hot flushes, I carry on and ignore them 16. I have to leave or avoid some social situations because of hot flushes 17. I deal with my hot flushes by being open and talking about them with other people
Moderately disagree
Mildly disagree
Mildly agree
Moderately agree
Strongly agree
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