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The accuracy of patients' perceptions of the risks associated with localised prostate cancer treatments

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The accuracy of patients' perceptions of the risks associated with localised prostate cancer treatments
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  The accuracy of patients ’  perceptions of the risksassociated with localised prostate cancertreatments Marie-Anne van Stam* † , Henk G. vander Poel ‡ , Jochem R.N. van der Voort van Zyp § ,Corinne N. Tillier ‡ , Simon Horenblas* ‡ , Neil K. Aaronson † andJ.L.H. Ruud Bosch* Department of *Urology, University Medical Center Utrecht, Utrecht,The Netherlands,  †  Division of Psychosocial Research and Epidemiology ,  ‡ Department of Urology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital,Amsterdam, The Netherlands, and   §  Department of Radiation Oncology, University Medical Center Utrecht, Utrecht, The Netherlands  Objectives To assess the accuracy of patients ’  perceptions of the risksassociated with localised prostate cancer treatments (radicalprostatectomy [RP], radiotherapy [RT], and active surveillance[AS]), and to identify correlates of misperceptions. Patients and methods We used baseline data (questionnaires completed aftertreatment information was provided but before treatment) of 426 patients with newly diagnosed localised prostate cancerwho participated (87% response rate) in a prospective,longitudinal, multicentre study. Patients ’  pretreatmentperceptions of differences in adverse outcomes of treatmentswere compared to those based on the literature. We usedunivariate and multivariate linear regression to identify correlates of misperceptions. Results About two-thirds (68%,  n  =  211) of the patients did notunderstand that the risk of disease recurrence iscomparable between RP and RT. More than half of thepatients did not comprehend that RP patients are atgreater risk of urinary incontinence (65%,  n  =  202) anderectile dysfunction (61%,  n  =  190), and less at risk of bowel problems (53%,  n  =  211) compared to RT patients.Many patients overestimated the risk of requiring de fi nitivetreatment following AS (45%,  n  =  157) and did notunderstand that mortality rates following AS, RP, and RTare comparable (80%,  n  =  333). Consulting a radiotherapistor a clinical nurse specialist was positively associated with,and emotional distress was negatively associated with, betterunderstanding of the risks ( P <  0.05), although effect sizeswere small. Conclusion Prior to choosing treatment, most patients with prostatecancer poorly understood the differences in treatment risks.Greater efforts should be made to better understand why these misperceptions occur and, most importantly, how they can be corrected. Keywords patients ’  risk perceptions, adverse outcomes, correlates of misperceptions, #PCSM, #ProstateCancer Introduction Prostate cancer is one of the most common cancers diagnosedin men in Europe [1]. Treatment options, also termedmanagement options, for localised prostate cancer include:radical prostatectomy (RP), radiation therapy (RT), and activesurveillance (AS) [1]. These options have comparable prostatecancer-speci fi c mortality rates [2], but differ in the risk of adverse outcomes [3]. For example, although RP and RT have acomparable risk of disease recurrence [2,4], RP patients are atmore risk of urinary incontinence and erectile dysfunction, andRT patients are more at risk of bowel problems and increasedurinary frequency [3,5,6].Because of the compromises inherent in choosing amongstthese various treatment options, prostate cancer guidelinesrecommend shared decision-making [1,7,8]. This is a processof interaction between health professionals and patients inwhich information is exchanged about treatment options andpatients ’  personal preferences [9,10]. However, wheninvolving patients in decision making, it is important thatthey have an accurate understanding of the differencesamongst the treatment options [9,11,12]. Several qualitativestudies have suggested that patients ’  treatment preferences arefrequently based on misperceptions rather than on accurateinformation [13  –  16]. To our knowledge, no quantitativestudies have investigated the extent to which patients with © 2017 The AuthorsBJU International © 2017 BJU International | doi:10.1111/bju.14034  BJU Int   2017Published by John Wiley & Sons Ltd. www.bjui.org wileyonlinelibrary.com  prostate cancer have an accurate understanding of the risk of adverse outcomes for the various treatment options [17,18].This detailed information about patients ’  (inaccurate)perceptions, is crucial in the process of creating scalable anddurable interventions to improve patients understanding of the differences between prostate cancer treatments [19].In the present paper, we report on the results of aquantitative study of: (i) patients ’  perceptions of the risk of disease recurrence, urinary continence, and erectiledysfunction, and bowel problems associated with RP and RT,and the perceived likelihood of having to eventually undergode fi nitive treatment after initially opting for AS; (ii) theaccuracy of these risk perceptions when compared to thestate-of-the-art literature on these topics; and (iii) the factorsassociated with patients ’  misperceptions. Patients and Methods Between 2014 and 2016, we recruited newly diagnosedpatients with clinically localised prostate cancer (cT1  –  cT2 orGleason score  ≤ 7, PSA level  ≤ 20 ng/mL) from 13 Dutchclinical facilities (one academic centre, one cancer centre, and11 community hospitals), as part of a longitudinalobservational study of patients with localised prostate cancer.Patients were recruited by the local urologist or clinical nursespecialist after information was provided about the treatmentoption(s) available to the patient. This included one or moreof the following options: RP, external beam radiotherapy (EBRT), brachytherapy (BT), or AS.For the present analysis, we used data from the baselinequestionnaire that was completed after information wasprovided about the treatment options, but before the start of treatment. Clinical data were obtained from the medicalrecords. Study procedures, including informed consentprocedures, were approved by the Medical Ethical Review Committee (reference number WAG/om/14/017805). Study Measures Perceived Risks of RP and RT We assessed patients ’  risk perceptions (in percentages)regarding the most prevalent adverse events after RP and RT.These included disease recurrence, urinary continence, anderectile dysfunction, and bowel problems. There are differentde fi nitions of recurrence after prostate cancer treatments [1],in our questionnaire we needed to use a de fi nitioncomprehensible for patients, we therefore de fi ned the risk of recurrence as  ‘ the likelihood of the tumour returning aftertreatment ’ . For each risk, response options ranged from a 0%to 100% likelihood of occurrence (Table 1) [1]. We assessedthe risks for each treatment option separately (RP, EBRT, andBT); however, patients did not have to answer questionsabout treatments not offered to them. Accuracy of the Perceived Differences between RPand RT Because it is important that patients accurately understandthe differences between RP and RT, we de fi ned an  ‘ accurateperception ’  as a response that was consistent with thedirection of the difference between RP and RT reported inthe state-of-the-art literature [2  –  6,17,20,21]. For example, ‘ Patient X  ’  rated the likelihood of the tumour returning as10% for RP and 40% for RT. His answer was categorised as ‘ RP  <  RT ’ , and thus as having an  ‘ inaccurate perception ’ about disease recurrence because there is currently noevidence that RP or RT is associated with an increased risk of primary treatment failure for patients with low-risk prostatecancer [1,2]. Table 1 describes the details about the adverseevents that were rated, and the decision rules for determining the (in)accuracy of the patients ’  responses [22].RT is a collective term for EBRT and BT. We thereforecalculated these accuracy scores twice, for RP vs EBRT andfor RP vs BT. For both comparisons, the same decision rulesfor determining the (in)accuracy of responses was applied(Table 1) [5,23,24].The overall accuracy of perceptions for differences in therisks associated with RP vs EBRT (AccRPvsEBRT), and RP vsBT (AccRPvsBT), was calculated using the following equation:total # of accurate perceptionstotal # of perceptions   100 Perceived Risks of AS We formulated two questions about AS (Table 1): theperceived likelihood of eventually requiring de fi nitivetreatment, and the expected effect of AS on mortality compared to de fi nitive treatment [13,25]. Accuracy of Perceived Risks of AS Lacking a widely accepted estimate of the probability of eventually needing de fi nitive treatment after a period of AS,we chose threshold points 10 percentage points beyond the28% point estimate from a recently published meta-analysis[26], and the 54% point estimate in the Prostate Testing forCancer and Treatment (ProtecT) trial [2], rounding to thenearest tenths place (20  –  60%; Table 1). We de fi ned apatient ’ s rating of the expected effect of AS vs RP or RT onmortality as correct if he agreed that that risk was equivalent 2 © 2017 The AuthorsBJU International © 2017 BJU International van Stam  et al  .  [2]. The overall accuracy of patients ’  perceptions of AS(AccAS) was calculated as described above. Correlates of Overall Accuracy Scores We investigated a range of patient and clinical variables aspotential correlates of the accuracy of patients ’  perceptions of risk (Table 2). In addition to participants ’  self-reportedsociodemographic and clinical characteristics, we obtainedGleason score, cT-status, and PSA level at time of diagnosisfrom the medical records. Health-related quality of life(HRQoL) was assessed using the HRQoL scales of theEuropean Organisation for Research and Treatment of Cancer quality-of-life 30-item core questionnaire (EORTCQLQ-C30) and prostate cancer-speci fi c quality-of-life 25-item(QLQ-PR25) questionnaire. All scores are linearly transformed to a 0  –  100 scale, with higher scores re fl ecting more symptoms or higher levels of functioning [27,28].Psychosocial factors were assessed by study speci fi c questionsand the Control Preferences Scale to assess patients ’  preferredrole in treatment decision-making (categorised as active,collaborative, passive) [29]. Statistical Analysis We used Student ’ s  t  -tests and chi-squared tests to comparethe characteristics of the men included in and excluded fromthe analysis.To avoid over- or underestimation of patients ’  accuracy rates,we examined the association between risk perception dataand: hospital site, prostate cancer risk-group, age, andbaseline physical functioning [1]. In case of clustering of thedata at the hospital level, we corrected for this by adding hospital as a random effect in the statistical model. In case of a signi fi cant association between one or more of the patientcharacteristics and risk perceptions, we strati fi ed our analysesby subgroup.We used linear regression to identify univariate predictors of the overall accuracy scales (AccRPvsEBRT, AccRPvsBT, andAccAS). Subsequently, we used multivariate regressionanalysis, including all variables signi fi cant at the univariatelevel, to identify those factors most strongly associated withthe overall accuracy scales.We performed a sensitivity analysis to examine the stability of the results for AS by replicating these analyses only including low-risk patients. The reason for doing so is thatthere is considerable variation in selection criteria applied forAS [26,30], but current prostate cancer guidelines recommendAS for low-risk patients only [1].We considered  P   ≤  0.05 as indicative of statistical signi fi cance.Variance explained was used to estimate the strength of       T    a     b     l    e     1      I     t    e    m    s    u    s    e     d     t    o    a    s    s    e    s    s    p    a     t     i    e    n     t    s                            ’     r     i    s     k    p    e    r    c    e    p     t     i    o    n    s    o     f    a     d    v    e    r    s    e    o    u     t    c    o    m    e    s    a     f     t    e    r    p    r    o    s     t    a     t    e    c    a    n    c    e    r     t    r    e    a     t    m    e    n     t ,    a    n     d     t     h    e     d    e           fi     n     i     t     i    o    n    o     f    a    c    c    u    r    a     t    e    a    n     d     i    n    a    c    c    u    r    a     t    e    p    e    r    c    e    p     t     i    o    n    s .      Q    u    e    s     t     i    o    n     A    n    s    w    e    r    o    p     t     i    o    n  ,     %     A    c    c    u    r    a     t    e    p    e    r    c    e    p     t     i    o    n     I    n    a    c    c    u    r    a     t    e    p    e    r    c    e    p     t     i    o    n      R   a     d     i   c   a     l    t   r   e   a    t   m   e   n    t   s 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    1    0    %    (    i   n    d    i   c   a   t    i   n   g   a   p   a   t    i   e   n   t    d    i    d   n   o   t   p   e   r   c   e    i   v   e   a    d    i    f    f   e   r   e   n   c   e    i   n   r    i   s    k   s    b   e   t   w   e   e   n   t    h   e   t   r   e   a   t   m   e   n   t   s    )   w   a   s   s   u   p   p   o   r   t   e    d    b   y   t    h   e    M    i   n    i   m   a    l    l   y    I   m   p   o   r   t   a   n   t    D    i    f    f   e   r   e   n   c   e    f   o   r   m   u    l   a    [   m   e   a   n    (   s   c   a    l   e        |     0 .   5        *     S    D        D     R    P   v   s    R    T    )      =     1    0 .    2    1    ]   a   s    d   e       fi    n   e    d    b   y    N   o   r   m   a   n   e   t   a    l .    [    2    2    ] .    *    F   o   r   e   a   c    h   t   r   e   a   t   m   e   n   t   o   p   t    i   o   n   w   e   a   s   s   e   s   s   e    d   t    h   e   s   a   m   e   q   u   e   s   t    i   o   n  ;       †     E    l   e   v   e   n   a   n   s   w   e   r   o   p   t    i   o   n   s   r   a   n   g    i   n   g    f   r   o   m    0    %   t   o    1    0    0    %  ;       ‡     B   e   c   a   u   s   e    R    T    i   s   a   c   o    l    l   e   c   t    i   v   e   t   e   r   m    i   n   c    l   u    d    i   n   g    E    B    R    T   a   n    d    B    T ,   w   e   c   a    l   c   u    l   a   t   e    d   t    h   e   s   e   a   c   c   u   r   a   c   y   s   c   o   r   e   s   t   w    i   c   e    (    R    P   v   s    E    B    R    T ,   a   n    d    R    P   v   s    B    T    ) . © 2017 The AuthorsBJU International © 2017 BJU International  3 Accuracy of PC patients ’  risk perceptions  Table 2  Participants characteristics and their association with overall accuracy scores. N   or  n/N   % or mean ( SD ) Correlates of:AccRPvsEBRT AccRPvsBT AccAS P   ( R  2  )  P   ( R  2  )  P   ( R  2  ) Clinical characteristics cT-status 0.772 (0.000) 0.146 (0.008) 0.964 (0.000)cT1 221 52cT2 187 44Gleason score 0.072 (0.011) 0.354 (0.003)  < 0.001* (0.046)Gleason 6 253 59Gleason 7 153 36PSA, ng/mL 0.236 (0.009) 0.274 (0.009) 0.322 (0.005) < 10 313 7410  –  20 96 23Risk group † 0.258 (0.009) 0.181 (0.012) 0.181 (0.012)Low risk 170 40Intermediate risk 198 46High risk 58 14Comorbidities 0.998 (0.000) 0.917 (0.001) 0.061 (0.014)0 235 551 102 24 > 1 89 21Primary treatment 0.695 (0.005) 0.253 (0.014) 0.253 (0.014)AS 129 30RP 188 44EBRT 55 13BT 47 11Received information from : Urologist (no/yes) 65/361 15/85 0.119 (0.008) 0.325 (0.003) 0.017 (0.014)Nurse specialist (no/yes) 217/209 51/49 0.099 (0.009) 0.046* (0.014) 0.071 (0.008)Radiotherapist (no/yes) 395/31 93/7 0.014* (0.019) 0.174 (0.006) 0.388 (0.002)GP (no/yes) 403/23 95/5 0.641 (0.001) 0.474 (0.002) 0.055 (0.009)Total number of consulted HPs 426 1.5 (0.64) 0.146 (0.007) 0.056 (0.012) 0.408 (0.002)Received advice from family/friends (no/yes) 277/149 65/35 0.895 (0.000) 0.385 (0.003) 0.189 (0.004)Used other sources of information (no/yes) 26/391 6/92 0.280 (0.004) 0.587 (0.001) 0.830 (0.000)Already decided about treatment (no/yes) 217/209 51/49 0.141 (0.007) 0.594 (0.001) 0.831 (0.000)Weeks between diagnosis and response 426 3.25 (3.40) 0.864 (0.000) 0.950 (0.000) 0.193 (0.004) Demographic characteristics Age 426 66.46 (6.15) 0.595 (0.001) 0.766 (0.000) 0.188 (0.004)Education 0.491 (0.008) 0.836 (0.003) 0.681 (0.004) < High school 21 5High school 132 31Some higher education 104 25Completed higher education 168 39Employment 0.709 (0.000) 0.487 (0.002) 0.497 (0.001)Employed 134 32Not employed or retired 291 68Marital status 0.114 (0.008) 0.397 (0.002) 0.324 (0.002)Married or has partner 381 89Single or widower 45 11Ethnicity 0.164 (0.006) 0.666 (0.001) 0.189 (0.004)Non-Dutch 20 5Dutch 406 95 Psychosocial characteristics Preferred role in decision making 0.163 (0.012) 0.480 (0.002) 0.227 (0.004)Active 158 37Collaborative 220 52Passive 48 11History of depression 0.877 (0.000) 0.888 (0.000) 0.756 (0.000)No 383 89Yes/I am not sure 31 7Family history of cancer 0.399 (0.002) 0.906 (0.000) 0.495 (0.001)No/do not know 138 32Yes 288 68Knows someone with prostate cancer (no/yes) 188/238 44/56 0.705 (0.021) 0.150 (0.007) 0.559 (0.001) 4 © 2017 The AuthorsBJU International © 2017 BJU International van Stam  et al  .  observed associations (i.e., effect size). An  R 2 of 0.01 wasconsidered small, 0.09 as moderate, and 0.25 as large [31]. Results During the recruitment period, 474 of 546 invited patients (87%)agreed to participate and returned the baseline questionnaire(median timing of response was 2 weeks after diagnosis;interquartile range, 1  –  4 weeks). For the present analysis, weexcluded patients who reported that they had not yet received allinformation about their prostate cancer treatment options oranswered none of the risk perception items ( n  =  48). There wereno signi fi cant differences in baseline characteristics (Gleasonscore, cT-status, PSA level, or age) between those patientsincluded ( n  =  426) and those excluded from the analysis ( n  = 120). Characteristics of the patients are presented in Table 2. Perceived Risks of RP, RT, and AS As described in Table 3, on average, patients perceived thefollowing risks of adverse outcomes: disease recurrence - RP16%, EBRT 30%, and BT 28%; urinary incontinence - RP39%, EBRT 38%, and BT 34%; erectile dysfunction - RP 50%,EBRT 46%, and BT 39%; bowel problems - RP 23%, EBRT36%, and BT 31%; and perceived likelihood of eventually requiring de fi nitive treatment after AS, 57% (54% for low-risk patients only). There were no signi fi cant associations betweenthe risk perception scales and: hospital site, prostate cancerrisk group, age, or baseline physical functioning ( P   >  0.10;Table S1). Accuracy of the Perceived Differences between RPand RT As shown in Figure 1 and Table 4, only 32% ( n  =  100) of thepatients understood the risk of disease recurrence is similarfor RP and EBRT. About one-third (35%,  n  =  107) of thepatients comprehended that RP patients are more at risk of urinary incontinence. Similarly, 39% ( n  =  120) understoodthat the risk of erectile dysfunction is higher for RP patients.The accuracy rate did not change considerably (41%,  n  =  89)when excluding patients with problems with acquiring andretaining an erection (based on QLQ-PR25, item 23). Almosthalf (47%,  n  =  142) of the patients understood that the risk of bowel problems is higher after EBRT. Most results weresimilar (accuracy rate difference  < 10%) when comparing therisk perceptions of RP with BT (Table 4). The only differenceconcerned erectile dysfunction, 54% of the patientsunderstood this risk is higher after RP compared to BT (vs39% for RP compared to EBRT). Accuracy of Perceived Risks of AS Most patients (45%,  n  =  157) overestimated the risk of eventually requiring de fi nitive treatment after AS (accuracy rate 43%; Table 4 and Fig. 1). Only 20% ( n  =  82) of thepatients understood that mortality rates after AS andde fi nitive treatment are comparable at 10 years [2]. Whenonly including low-risk patients, the accuracy rates increasedslightly (eventually requiring de fi nitive treatment, 51%,  n  = 76; mortality, 24%,  n  =  40). Predictors of Overall Accuracy of Perceived Risk Univariate correlates of overall accuracy scores(AccRPvsEBRT, AccRPvsBT, and AccAS) are presented inTable 2. At the multivariate level, delivery of treatmentinformation by a radiotherapist was a signi fi cant predictor of a better understanding of differences between RP and EBRT(the average accuracy rate for those who spoke to aradiotherapist was 50%, vs 37% for those who did not; fullmodel  R 2 =  0.038). Similarly, delivery of treatmentinformation by a clinical nurse specialist was a multivariatepredictor of better understanding of differences between RP Table 2  (continued) N   or  n/N   % or mean ( SD ) Correlates of:AccRPvsEBRT AccRPvsBT AccAS P   ( R  2  )  P   ( R  2  )  P   ( R  2  ) HRQoL  Urinary symptoms 426 14.55 (19.97) 0.401 (0.002) 0.675 (0.001) 0.157 (0.005)Bowel symptoms 426 2.76 (6.47) 0.996 (0.000) 0.703 (0.001) 0.913 (0.000)Masculine identity threat 426 7.75 (16.80) 0.988 (0.000) 0.914 (0.000) 0.698 (0.000)Sexual activity 426 32.59 (21.79) 0.503 (0.001) 0.988 (0.000) 0.988 (0.000)Sexual functioning 353 72.33 (21.49) 0.992 (0.000) 0.793 (0.000) 0.531 (0.001)Emotional Functioning 426 78.25 (19.85) 0.130 (0.007) 0.511 (0.001) 0.023 (0.013)Physical functioning 426 94.87 (11.26) 0.715 (0.000) 0.311 (0.004) 0.262 (0.003) HP, health professional. Percentages for a given variable do not add up to 100% if the variable contained missing data. Categories with (n  <  15) are excluded from regressionanalysis. *Signi  fi cant multivariate correlate of the dependent variable;  †   According to European Association of Urology guidelines: Low   =  PSA level   < 10 ng/mL and Gleason score  < 7 and cT1  –  2a; Intermediate  =  PSA level 10   –  20 ng/mL or Gleason score 7 or cT2b; High  =  PSA level   > 20 ng/mL or Gleason score  > 7 or cT2c. © 2017 The AuthorsBJU International © 2017 BJU International  5 Accuracy of PC patients ’  risk perceptions
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