Patient preferences for cancer screening in chronic kidney disease: a best-worst scaling survey.

BACKGROUND: Despite an increased cancer risk for patients with chronic kidney disease (CKD), uptake of cancer screening varies due to competing priorities and complex health-related issues. This study aimed to elicit the preferences and important attributes of cancer screening in patients with CKD. METHODS: An on-line best-worst scaling survey was used to ascertain the relative importance of 22 screening attributes among CKD patients using an incomplete block design. Preference scores (0-1) were calculated by multinomial logistic regression. Preference heterogeneity was evaluated. RESULTS: The survey was completed by 83 patients: 26 not requiring kidney replacement therapy, 20 receiving dialysis and 37 transplant recipients (mean age 59 years, 53% men, 75% prior to cancer screening). The five most important attributes were early detection {preference score 1.0 [95% confidence interval (CI) 0.90-1.10]}, decreased risk of cancer death [0.85 (0.75-0.94)], false negatives [0.71 (0.61-0.80)], reduction in immunosuppression if detected [0.68 (0.59-0.78)] and non-invasive interventions after positive results [0.68 (0.59-0.78)]. Preference heterogeneity reflected the stage of CKD. Immunosuppression reduction [mean difference 0.11 (95% CI 0.02-0.19)] and views of family/friends [0.10 (reference attribute)] were important for transplant recipients. Screening frequency [-0.18 (95% CI -0.26 to -0.10)] and overdiagnosis of harmless cancers [-0.14 (95% CI -0.22 to -0.10)] were important for dialysis patients. CONCLUSION: Early detection, risk of cancer-related death, false negatives, immunosuppression reduction and non-invasive interventions following detection are important cancer screening considerations among CKD patients. Patient preferences are key to shared decision-making and individualized cancer screening.

Discrete Choice Experiments to Elicit Patient Preferences for Decision Making in Transplantation.

Providing care for transplant recipients is challenging given the need to maintain optimal graft function and survival while managing the debilitating side effects and complications associated with immunosuppression including infection, cancer, new-onset diabetes mellitus, and cardiovascular disease. Given the complexity of treatment options and the uncertainty about long-term benefits and harms of treatment, understanding patient preferences and values are key to ensuring that clinical decisions take into consideration patient priorities to support shared decision making and self-management. Choice experiments are increasingly used to quantify patient and community preferences, including in the field of transplantation. Discrete choice experiments (DCEs) are a well-established, validated methodology used to elicit preferences for decision making in health and other settings. In transplantation, for example, DCEs have been used to elicit patient preferences for outcomes following kidney transplantation, to identify community preferences factors for organ allocation and in establishing core outcomes. This article provides an overview of the concepts and methods used in the design of DCEs and how patients' preferences can be applied in shared decision making in transplantation.

Behavioural and pharmaceutical interventions for the prevention of skin cancers in solid organ transplant recipients: a systematic review of randomised controlled trials.

OBJECTIVES: Solid organ transplant recipients are at increased risk of skin cancer, affecting more than 50% of recipients. We aimed to determine the effectiveness of interventions for behavioural change for sun protection or skin cancer prevention in solid organ transplant recipients. DESIGN: Systematic review. DATA SOURCES: We searched MEDLINE, Embase, the Cochrane Central Register of Controlled Trials (CENTRAL) and CINAHL from inception to November 2019. ELIGIBILITY CRITERIA: We included randomised controlled trials that evaluated the effect of behavioural or pharmaceutical interventions on behavioural change or skin cancer prevention in solid organ transplant recipients. DATA EXTRACTION AND SYNTHESIS: Risks of bias and evidence certainty were assessed using Cochrane and the Grading of Recommendations Assessment Development and Evaluation framework. RESULTS: Twenty trials (n=2295 participants) were included. It is uncertain whether behavioural interventions improve sun protection behaviour (n=3, n=414, standardised mean difference (SMD) 0.89, 95% CI -0.84 to 2.62, I2=98%) and knowledge (n=4, n=489, SMD 0.50, 95% CI 0.12 to 0.87, I2= 76%) as the quality of evidence is very low. We are uncertain of the effects of mammalian target of rapamaycin inhibitors on the incidence of non-melanocytic skin cancer (n=5, n=1080, relative risk 0.46, 95% CI 0.28 to 0.75, I2 =72%) as the quality of evidence is very low. CONCLUSIONS: Behavioural and pharmaceutical preventive interventions may improve sun protective behaviour and knowledge, and reduce the incidence of non-melanocytic skin cancer, but the overall quality of the evidence is very low and insufficient to guide decision-making and clinical practice. PROSPERO REGISTRATION NUMBER: CRD42017063962.

Identifying and integrating patient and caregiver perspectives in clinical practice guidelines for percutaneous renal biopsy.

AIM: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia - Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient-relevance. METHODS: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. RESULTS: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self-management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self-management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. CONCLUSIONS: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self-management were explicitly addressed; enabling a patient-centred approach to renal biopsies.

Men's perspectives of prostate cancer screening: A systematic review of qualitative studies.

BACKGROUND: Prostate cancer is the most commonly diagnosed non-skin cancer in men. Screening for prostate cancer is widely accepted; however concerns regarding the harms outweighing the benefits of screening exist. Although patient's play a pivotal role in the decision making process, men may not be aware of the controversies regarding prostate cancer screening. Therefore we aimed to describe men's attitudes, beliefs and experiences of prostate cancer screening. METHODS: Systematic review and thematic synthesis of qualitative studies on men's perspectives of prostate cancer screening. Electronic databases and reference lists were searched to October 2016. FINDINGS: Sixty studies involving 3,029 men aged from 18-89 years, who had been screened for prostate cancer by Prostate Specific Antigen (PSA) or Digital Rectal Examination (DRE) and not screened, across eight countries were included. Five themes were identified: Social prompting (trusting professional opinion, motivation from family and friends, proximity and prominence of cancer); gaining decisional confidence (overcoming fears, survival imperative, peace of mind, mental preparation, prioritising wellbeing); preserving masculinity (bodily invasion, losing sexuality, threatening manhood, medical avoidance); avoiding the unknown and uncertainties (taboo of cancer-related death, lacking tangible cause, physiological and symptomatic obscurity, ambiguity of the procedure, confusing controversies); and prohibitive costs. CONCLUSIONS: Men are willing to participate in prostate cancer screening to prevent cancer and gain reassurance about their health, particularly when supported or prompted by their social networks or healthcare providers. However, to do so they needed to mentally overcome fears of losing their masculinity and accept the intrusiveness of screening, the ambiguities about the necessity and the potential for substantial costs. Addressing the concerns and priorities of men may facilitate informed decisions about prostate cancer screening and improve patient satisfaction and outcomes.

Beliefs and Attitudes to Bowel Cancer Screening in Patients with CKD: A Semistructured Interview Study.

BACKGROUND AND OBJECTIVES: Bowel cancer is a leading cause of cancer-related death in people with CKD. Shared decision making regarding cancer screening is particularly complex in CKD and requires an understanding of patients' values and priorities, which remain largely unknown. Our study aimed to describe the beliefs and attitudes to bowel cancer screening in patients with CKD. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Face to face, semistructured interviews were conducted from April of 2014 to December of 2015 with 38 participants ages 39-78 years old with CKD stages 3-5, on dialysis, or transplant recipients from four renal units in Australia and New Zealand. Thematic analysis was used to analyze the transcripts. RESULTS: Five themes were identified: invisibility of cancer (unspoken stigma, ambiguity of risk, and absence of symptomatic prompting); prioritizing kidney disease (preserving the chance of transplantation, over-riding attention to kidney disease, protecting graft survival, and showing loyalty to the donor); preventing the crisis of cancer (evading severe consequences and cognizant of susceptibility); cognitive resistance (reluctance to perform a repulsive procedure, intensifying disease burden threshold, anxiety of a positive test, and accepting the inevitable); and pragmatic accessibility (negligible financial effect, convenience, and protecting anonymity). CONCLUSIONS: Patients with CKD understand the potential health benefits of bowel cancer screening, but they are primarily committed to their kidney health. Their decisions regarding screening revolve around their present health needs, priorities, and concerns. Explicit consideration of the potential practical and psychosocial burdens that bowel cancer screening may impose on patients in addition to kidney disease and current treatment is suggested to minimize decisional conflict and improve patient satisfaction and health care outcomes in CKD.