The impact of prostate cancer diagnosis and treatment decision-making on health-related quality of life before treatment onset

Between January 2013 and May 2014, ten Dutch hospitals participated in this study and recruited 388 patients who were scheduled for a first prostate biopsy due to suspected Pca (M _age = 66.5, SD = 6.6; Fig. 1). A host hoc power analysis revealed that this sample size was sufficient to achieve a power of 0.80 for detecting differences with an effect size from Cohen’s d = 0.2 (with alpha 0.05). During consultation, patients were informed that the goal of the study was to investigate quality of care in prostate examination and quality of life of patients undergoing this procedure. Together with an information letter, patients received the first questionnaire (t0) on paper and a pre-stamped envelope to return the questionnaire. Follow-up questionnaires were sent to patients whose biopsy result confirmed Pca. These patients received this second questionnaire and a pre-stamped envelope at their home address within 2 weeks after treatment decision-making (t1). Diagnosis and the moment of treatment decision-making were monitored for all included patients from their (electronic) medical record. After review of the study protocol, the medical ethics review board of the initiating hospital waived the need for formal ethical approval (reference 2012.103) and all participating hospitals approved conducting the study. All patients signed an informed consent.

Descriptive statistics are presented as means and standard deviations (SD) for continuous variables and as frequencies and percentages for categorical variables. Mean HRQoL scores at t0 were compared to the scores obtained at t1 using paired-samples t tests. The association between personality traits and HRQoL scores was assessed using bivariate correlation analyses (Pearson’s). Linear regression modeling was carried out with global health as dependent variable and personality characteristics as independent variables, controlling for age, education, PSA levels, and diagnosis (dummy variable; for t0 only). All analyses were performed using SPSS version 22.0 (Statistical Package for Social Sciences, Chicago, IL, USA). p values < 0.05 were considered statistically significant.

At the pre-biopsy baseline (t0), HRQoL did not differ between patients whose biopsy result confirmed Pca and patients with a negative biopsy result (Table 2). After receiving diagnosis and treatment decision-making (t1), patients reported worse role and cognitive functioning and more symptoms (fatigue, constipation, urinary, bowel, and hormonal). Sexual activity and functioning improved after treatment were chosen (all with p < 0.05; Table 2).

In case Pca was detected, symptoms and functioning reported prior to biopsy (t0) were not associated with selection of a particular treatment. At the time point after treatment decision-making (t1), men who chose a curative treatment reported reduced functioning and more symptoms compared to men who selected AS (Table 3). No associations were found between treatment choice and personality characteristics (data not shown).

Prior to biopsy (t0), optimism was a significant predictor for global health (B = .31, p < .001). After receiving diagnosis and treatment decision-making (t1), a positive association was found between global health and decisional self-efficacy (B = 0.29, p = .04). Of the big five traits, extraversion (B = 0.14, p = .03) and neuroticism (B = − 0.17, p = .01) were significant predictors for global health at t0; no relations were found at t1.

Differences in HRQoL between patients who selected curative treatment over AS are not surprising. Men eligible for AS could be expected to be in a more favorable condition compared to men who need (immediate) curative treatment [33]. However, it is remarkable that most HRQoL differences were not present in our sample at baseline but were only reported after diagnosis and treatment selection. Moreover, the highest level of urinary symptoms at t0 was reported by men who later selected AS, while after the treatment decision was made, most symptoms were reported by men who selected a curative treatment. Therefore, changes in HRQoL appear to be influenced by the impact of diagnosis and treatment decision-making, rather than by changes in the patient’s physical condition. Possibly, the Pca diagnosis made men more aware of their symptoms and led them to attribute their overall condition more to their disease. Increased symptom burden and impaired functioning at t1 could also be explained by cognitive dissonance reduction [34]; consequently of a finalized treatment decision, men could be motivated to justify this decision as being the right one. This could have resulted in a revised HRQoL evaluation at t1 to make it consonant with the characteristics that would fit to the selected treatment [35, 36]. If biopsy itself caused a decline in HRQoL, all patients should have reported lower HRQoL at t1, while this was only the case for patients who chose a curative treatment, patients from the AS group even reported (non-significant) improvements [37].

Earlier studies on physical and psychological outcomes in Pca patients highlighted the perceived masculinity threat men could experience [38, 39]. This threat affects how men cope with their condition and the perceived threat could cause a further decline of HRQoL after treatment. Although most of the work on masculinity threats in Pca patients focused on post-treatment outcomes, it is likely that this perceived threat is already present from diagnosis onwards. In our results, reduced role functioning and increased sexual functioning (compensatory behavior) could be indicative for the presence of a masculinity threat [40, 41].

Optimism and decisional self-efficacy were associated with better global health; this is in line with previous research that found optimism and decisional self-efficacy to be associated with less distress and better coping [21, 42]. In the current study, patients scoring higher on optimism report better HRQoL prior to biopsy, when Pca was suspected but not yet confirmed. After diagnosis, and a treatment decision was required, optimism seemed to play less of a role and decisional self-efficacy, the subjective feeling of being able to take the right action, making good decisions, and to ask questions, was positively associated with HRQoL. This adds to previous findings about knowledgeable (and therefore possibly more self-efficated) patients reporting better HRQoL [43].

Instead of focusing on a single trait (e.g., neuroticism), this study investigated a broader spectrum of the big five personality traits. At t0, extraversion and neuroticism were related to global health, while at t1, no relations were present anymore. Hence, we found no evidence of a moderating role of specific traits affecting changes in HRQoL. Another explanation could be that the brief measure we used was not sensitive enough to also detect statistically significant differences in the smaller t1 sample. Future studies should use more extensive measures to investigate this relation in more detail.

Some limitations need to be discussed. First, no detailed clinical data about tumor stage was available, and PSA was self-reported by participants. However, patients were only eligible for inclusion if Pca was suspected, following pre-biopsy screening (rectal examination and PSA testing). Therefore, we were still able to sample a homogeneous patient population. And although we had no registration of the number of patients refusing participation, the average Pca detection rate in our sample was similar to what was expected based on literature [5]. Secondly, dropout of men without Pca diagnosis and non-response at t1 led to a limited number of patients per treatment group available for further analyses. Moreover, the comparison between t1 and t0 on group level had sufficient power; however, the subgroup comparisons were lacking power. As we found no statistically significant differences in patient characteristics between responders and non-responders, we estimate the risk for selection bias was low. Our results should therefore be seen as exploratory findings on the development of HRQoL in Pca patients with a pre-diagnosis baseline. Follow-up studies preferably use larger samples.

Based on the changes in HRQoL we found in this study, future studies should focus on determining the impact of the individual aspects of undergoing biopsy, receiving Pca diagnosis, and selecting treatment. Compared to the current design, this would require an additional measurement in between receiving diagnosis and making a treatment decision.

Furthermore, the current study did not follow up on patients with a negative biopsy result. To have a complete comparison of HRQoL after prostate biopsy, post-biopsy HRQoL should also be compared between patients with a positive and patients with a negative biopsy result. Recently, a prospective study found similar HRQoL before and after diagnosis between Pca patients on AS and a non-cancer control group, indicating HRQoL of patients on AS is similar to that of patients without cancer [44]. However, it would be interesting to investigate if decisional self-efficacy is still associated with HRQoL outcomes when no treatment decision has to be made.

This study emphasizes the impact of undergoing prostate biopsy, receiving a Pca diagnosis, and selecting treatment. Clinicians should be aware that optimism and decisional self-efficacy are associated with HRQoL prior to treatment onset. To ensure that optimism does not backfire post-treatment, it is important to ensure accurate risk perceptions in patients about the chances of treatment success and the occurrence of treatment side effects. Interventions to stimulate shared decision-making, like decision aids, could be helpful for achieving this, as well as to contribute to patients’ decisional self-efficacy levels [45].