Maarten Cuypers

Patients are dissatisfied with information provision: perceived information provision and quality of life in prostate cancer patients

To determine the satisfaction with information received by prostate cancer survivors and associations with health‐related quality of life (HRQoL) and illness perception.

Impact of a web-based treatment decision aid for early-stage prostate cancer on shared decision-making and health outcomes: study protocol for a randomized controlled trial

BackgroundAt an early stage, prostate cancer patients are often eligible for more than one treatment option, or may choose to defer curative treatment. Without a pre-existing superior option, a patient has to weigh his personal preferences against the risks and benefits of each alternative to select the most appropriate treatment. Given this context, in prostate cancer treatment decision-making, it is particularly suitable to follow the principles of shared decision-making (SDM), especially with the support of specific instruments like decision aids (DAs). Although several alternatives are available, present tools are not sufficiently compatible with routine clinical practice. To overcome existing barriers and to stimulate structural implementation of DAs and SDM in clinical practice, a web-based prostate cancer treatment DA was developed to fit clinical workflow. Following the structure of an existing DA, Dutch content was developed, and values clarification methods (VCMs) were added. The aim of this study is to investigate the effect of this DA on (shared) treatment choice and patient-reported outcomes.Methods/designNineteen Dutch hospitals are included in a pragmatic, cluster randomized controlled trial, with an intervention and a control arm. In the intervention group, the DA will be offered after diagnosis, and a summary of the patients’ preferences, which were identified with the DA, can be discussed by the patient and his clinician during later consultation. Patients in the control group will receive information and decisional support as usual. Results from both groups on decisional conflict, treatment choice and the experience with involvement in the decision-making process are compared. Patients are requested to fill in questionnaires after treatment decision-making but before treatment is started, and 6 and 12 months later. This will allow the development of treatment satisfaction, decisional regret, and quality of life to be monitored. Clinicians from both groups will evaluate their practice of information provision and decisional support.DiscussionThis study will describe a web-based prostate cancer treatment DA with VCMs. The effect of this DA on the decision-making process and subsequent patient reported outcomes will be evaluated.Trial registrationThe Netherlands National Trial Register: NTR4554, registration date 1 May 2014.

Prostate cancer survivors with a passive role preference in treatment decision-making are less satisfied with information received: Results from the PROFILES registry

OBJECTIVE To investigate decision-making role preferences and their association with the evaluation of information received in a sample of low-risk and intermediate-risk prostate cancer (Pca) survivors. METHODS Cross-sectional study involved 562 men diagnosed with low-risk or intermediate-risk Pca (median time since diagnosis, 48mo), measuring preferred decision-making role (Control Preference Scale) and the evaluation of information received (EORTC QLQ-INFO25). Analyses were performed using analysis of variance, chi-square tests, and multivariable linear regression models. RESULTS Men who preferred a passive role were older and less educated than other preference groups and more often selected a noninvasive treatment option (all with P<0.001). The passive role preference group reported having received less information, judged the received information as less helpful, and indicated lower overall satisfaction with information received (all with P<0.05). Role preference groups did not differ in their desire to receive more information. CONCLUSION Compared with nonpassive preference groups, the preference for a passive role in Pca treatment decision-making is associated with less satisfaction with the information received. PRACTICE IMPLICATIONS Assessment of role preferences and tailored information provision could improve satisfaction with information received and perhaps may ultimately lead to improved patient participation in treatment decision-making.

A global, incremental development method for a web-based prostate cancer treatment decision aid and usability testing in a Dutch clinical setting:

Many new decision aids are developed while aspects of existing decision aids could also be useful, leading to a sub-optimal use of resources. To support treatment decision-making in prostate cancer patients, a pre-existing evidence-based Canadian decision aid was adjusted to Dutch clinical setting. After analyses of the original decision aid and routines in Dutch prostate cancer care, adjustments to the decision aid structure and content were made. Subsequent usability testing (N = 11) resulted in 212 comments. Care providers mainly provided feedback on medical content, and patients commented most on usability and summary layout. All participants reported that the decision aid was comprehensible and well-structured and would recommend decision aid use. After usability testing, final adjustments to the decision aid were made. The presented methods could be useful for cultural adaptation of pre-existing tools into other languages and settings, ensuring optimal usage of previous scientific and practical efforts and allowing for a global, incremental decision aid development process.

Impact of a web-based prostate cancer treatment decision aid on patient-reported decision process parameters: results from the Prostate Cancer Patient Centered Care trial

PurposeTo compare patients’ evaluation of the treatment decision-making process in localized prostate cancer between counseling that included an online decision aid (DA) and standard counseling.MethodsEighteen Dutch hospitals were randomized to DA counseling (n = 235) or the control group with standard counseling (n = 101) in a pragmatic, cluster randomized controlled trial. The DA was provided to patients at, or soon after diagnosis. Decisional conflict, involvement, knowledge, and satisfaction with information were assessed with a questionnaire after treatment decision-making. Anxiety and depression served as covariates.ResultsThe levels of decision involvement and conflict were comparable between patients in both groups. Patients with a DA felt more knowledgeable but scored equally well on a knowledge test as patients without a DA. Small significant negative effects were found on satisfaction with information and preparation for decision-making. A preference for print over online and depression and anxiety symptoms was negatively associated with satisfaction and conflict scores in the DA group.DiscussionThe DA aimed to support shared decision-making, while outcomes for a majority of DA users were comparable to patients who received standard counseling. Patients, who are less comfortable with the online DA format or experience anxiety or depression symptoms, could require more guidance toward shared decision-making. To evaluate long-term DA effects, follow-up evaluation on treatment satisfaction and decisional regret will be done.

Longitudinal regret and information satisfaction after deciding on treatment for localized prostate cancer with or without a decision aid. Results at one-year follow-up in the PCPCC trial

OBJECTIVE To investigate the effect of including an online decision aid (DA) during prostate cancer treatment counseling on decisional regret and information satisfaction in a one-year follow-up. METHODS Within a cluster RCT, 18 Dutch hospitals were randomized to DA counseling or care-as-usual, patients (n = 382) initially completed questionnaires directly after treatment decision making. Six and twelve months later regret (Decisional Regret Scale) and information satisfaction (SCIP-B) were assessed. Anxious and depressive symptoms (HADS) was included as possible covariate. RESULTS After 12 months, 43 participants (15%) regretted their treatment choice and 105 participants (36%) were dissatisfied with the information that was received at the time of decision-making, regardless of being exposed to the DA. Anxious and depressive symptoms at follow-up were associated with regret and information dissatisfaction. CONCLUSION No long-term benefical effects emerged from DA usage compared to patients who underwent standard counseling. PRACTICE IMPLICATIONS During PCa treatment counseling, healthcare providers should be aware of anxious and depressive symptoms.

Uptake and usage of an online prostate cancer treatment decision aid in Dutch clinical practice: A quantitative analysis from the Prostate Cancer Patient Centered Care trial

Implementation of patient’s decision aids in routine clinical care is generally low. This study evaluated uptake and usage of a novel Dutch web-based prostate cancer treatment decision aid within the Prostate Cancer Patient Centered Care trial. From an estimated total patient sample of 1006 patients, 351 received a decision aid (35% implementation rate; hospital ranges 16%–84%). After receipt of the decision aid, most patients accessed the decision aid, utilized most functions, although not completely, and discussed the decision aid summary in a subsequent consultation with their care provider. Including nurses for dissemination of decision aids seemed to positively affect decision aid uptake. Once received, patients seemed able to use the decision aid and engage in shared decision-making as intended; however, decision aid uptake and complete usage of all decision aid components should be further improved. Prior to the diagnosis consultation, handing out of the decision aid should be prepared.

PD47-07 The effect of a preference sensitive online decision aid on localized prostate cancer treatment: First results of a randomized cluster controlled trial

85% of younger patients. The vast majority of cT3 patients received radiotherapy in combination with hormonal therapy, regardless of age. However, in the eldest patients ( 80 years) hormonal monotherapy was applied most frequently (>60%). In the patients with cT4/N+/M+ PC, the use of hormonal therapy as monotherapy increased strongly with increasing age. The 5-year relative survival decreased with increasing age: 92% for the patients aged <70 years, 87% for patients aged 70-80 years, and 68% for patients aged 80 years. The 5-year relative survival of low stage PC appeared to be similar for patients aged <70 years versus 70, whereas the survival of advanced PC ( T3) was worse for older patients: 5-year relative survival is 97% versus 91% for the cT3 patients and 53% versus 43% for the cT4/N+/M+, respectively for patients aged <70 years versus 70 years. CONCLUSIONS: Elderly men with PC are more often diagnosed with advanced disease, possibly as a result of patients’ or doctors’ delay. After adjusting for disease stage, older patients have a worse prognosis than younger patients. Further research should elucidate whether elderly PC patients are treated optimally while taking the increased life expectancy and the trade-off between the beneficial effects and adverse events of the treatments into account.

14 Ervaren informatievoorziening bij prostaatkanker en aanbevelingen voor verbetering

SamenvattingHet kiezen voor een behandeloptie waarbij arts en patiënt beiden betrokken zijn, heet shared decision making (SDM). Urologische ziektebeelden lenen zich bij uitstek voor SDM, omdat er vaak meerdere gelijkwaardige behandelopties mogelijk zijn.