Utilizing qualitative methods, this study describes the perceptions of and reliance on spirituality among indigent Latino men with prostate cancer. Sixty men were interviewed in Spanish. Transcripts were transcribed verbatim, translated, and analyzed using grounded theory techniques. Common across all men was a process involving the formation of an alliance of support that included God, doctors, and self. From this alliance, men drew strength to manage their disease, maintained hope for the future, and found new existential meaning. By recognizing the potential value of this alliance, health care professionals may tap into a beneficial empowering resource for some Latino men.

Background

Decisional conflict is a source of anxiety and stress for men diagnosed with prostate cancer given uncertainty surrounding myriad treatment options. Few data exist to help clinicians identify which patients are at risk for decisional conflict. The purpose of this study was to examine factors associated with decisional conflict in economically disadvantaged men diagnosed with prostate cancer before any treatment choices were made.

Methods

A total of 70 men were surveyed at a Veterans Administration clinic with newly diagnosed localized prostate cancer enrolled in a randomized trial testing a novel shared decision-making tool. Baseline demographic, clinical, and functional data were collected. Independent variables included age, race, education, comorbidity, relationship status, urinary/sexual dysfunction, and prostate cancer knowledge. Tested outcomes were Decisional Conflict Scale, Uncertainty Subscale, and Perceived Effectiveness Subscale. Multiple linear regression modeling was used to identify factors associated with decisional conflict.

Results

Mean age was 63 years, 49% were African American, and 70% reported an income less than $30,000. Poor prostate cancer knowledge was associated with increased decisional conflict and higher uncertainty (P < .001 and P = 0.001, respectively). Poor knowledge was also associated with lower perceived effectiveness (P = 0.003) whereas being in a relationship was associated with higher decisional conflict (P = 0.03).

Conclusions

Decreased patient knowledge about prostate cancer is associated with increased decisional conflict and lower perceived effective decision-making. Interventions to increase comprehension of prostate cancer and its treatments may reduce decisional conflict. Further work is needed to better characterize this relationship and identify effective targeted interventions.

Background. Multiple studies have shown that digitally mediated decision aids help prepare patients for medical decision making with their providers. However, few studies have investigated whether decision-support preferences differ between non-English-speaking and English-speaking Latino men with limited literacy. Objective. To identify and compare health information seeking patterns, preferences for information presentation, and interest in digital decision aids in a sample of Southern Californian underserved Latino men with newly diagnosed prostate cancer at a county hospital. Methods. We conducted semistructured, in-depth telephone interviews with 12 Spanish-speaking and 8 English-speaking Latino men using a purposive sampling technique. Following transcription of taped interviews, Spanish interviews were translated. Using a coding protocol developed by the team, two bilingual members jointly analyzed the transcripts for emerging themes. Coder agreement exceeded 80%. Differences were resolved through discussion. Results. Thematic differences between groups with different preferred languages emerged. Most respondents engaged in online health information seeking using cellphones, perceived a paternalistic patient-provider relationship, and expressed willingness to use hypothetical digital decision aids if recommended by their provider. English speakers reported higher digital technology proficiency for health-related searches. They also more frequently indicated family involvement in digital search related to their condition and preferred self-guided, web-based decision aids. In comparison, Spanish speakers reported lower digital technology proficiency and preferred family-involved, coach-guided, paper and visual decision aids. English speakers reported substantially higher levels of formal education. Conclusion. Preferences regarding the use of digital technology to inform prostate cancer treatment decision making among underserved Latino men varied depending on preferred primary language. Effective preparation of underserved Latino men for shared decision making requires consideration of alternative approaches depending on level of education attainment and preferred primary language.

Aims

To develop a means to measure the quality of care provided to women treated for urinary incontinence (UI) through the development of quality-of-care indicators (QIs).

Methods

We performed an extensive literature review to develop a set of potential quality indicators for the management of UI. QIs were modeled after those previously described in the Assessing the Care of Vulnerable Elders (ACOVE) project. Nine experts ranked the indicators on a nine-point scale for both validity and feasibility. We analyzed preliminary rankings of each indicator using the RAND Appropriateness Method. A forum was then held in which each indicator was thoroughly discussed by the panelists as a group, after which the indicators were rated a second time individually using the same nine-point scale.

Results

QIs were developed that addressed screening, diagnosis, work-up, and both non-surgical and surgical management. Areas of controversy included whether routine screening for incontinence should be performed, whether urodynamics should be performed before non-surgical management is initiated, and whether cystoscopy should be part of the pre-operative work-up of uncomplicated stress incontinence. Following the expert panel discussion, 27 of 40 potential indicators were determined to be valid for UI with a median score of at least seven on a nine-point scale.

Conclusions

We identified 27 quality indicators for the care of women with UI. Once these QIs are pilot-tested for feasibility, they will be applied on a larger scale to measure the quality of care provided to women with UI in the United States.

Purpose

Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP).

Participants

Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP.

Findings to date

A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC.

Future plans

Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on performance against quality indicators will be provided to LDCs.

Aims and objectives

To describe the spirituality and religiosity of 30 non-directed (altruistic) living kidney donors in the USA and explore how they may have affected their motivations to donate and donation process experiences.

Background

The rise in non-directed donors and their ability to initiate kidney chains offer a novel approach to help alleviate the overextended kidney transplant wait list in the USA. However, little is known about the non-directed donors' motivations, characteristics and experiences.

Design

We conducted a qualitative-dominant study and used a grounded theory approach to analyse data.

Methods

Thirty participants completed in-depth interviews between April 2013-April 2015. Three analysts independently read and coded interview transcripts. Grounded theory techniques were used to develop descriptive categories and identify topics related to the non-directed donors donation experience.

Results

Sixteen of the 30 non-directed donorss discussed the topic of spirituality and religiosity when describing their donation experiences, regardless of whether they were actively practising a religion at the time of donation. Specifically, three themes were identified within spirituality and religiosity: motivation to donate, support in the process, and justification of their donation decisions postdonation.

Conclusions

Findings from this study are the first to describe how spirituality and religiosity influenced the experiences of U.S. non-directed donorss and may help improve non-directed donors educational resources for future spiritual or religious non-directed donors, and the overall non-directed donors donation experience in efforts to increase the living donor pool.

Relevance to clinical practice

Spirituality and religiosity are often overlooked yet potentially influential factors in Western medicine, as demonstrated through the experiences of Jehovah's Witnesses and their religious restrictions while undergoing surgery and the beliefs of Christian Scientists against taking medications and receiving medical procedures. Understanding needs of non-directed donors specifically with spirituality and religiosity can better position kidney transplant centres and teams to improve predonation screening of non-directed donor candidates and provide support services during the donation process.

Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.

Background

The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR.

Methods

Eleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate).

Results

Consensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site's relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements.

Conclusions

International collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.