Patient-Centered Approach to Develop the Patient's Preferences for Prostate Cancer Care (PreProCare) Tool.
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ABSTRACT:
SUBMITTER: Jayadevappa R
PROVIDER: S-EPMC6589971 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:PurposeThis study presents the validation of an index that defines and measures a patient-centered approach to quality survivorship care.MethodsWe conducted a national survey of 1,278 survivors of breast, prostate, and colorectal cancers to identify their priorities for cancer survivorship care. We identified 42 items that were "very important or absolutely essential" to study participants. We then conducted exploratory and confirmatory factor analyses (EFA/CFA) to develop and validate the Patient-Centered Survivorship Care Index (PC-SCI).ResultsA seven-factor structure was identified based on EFA on a randomly split half sample and then validated by CFA based on the other half sample. The seven factors include: (1) information and support in survivorship (7 items), (2) having a medical home (10 items) (3) patient engagement in care (3 items), (4) care coordination (5 items), (5) insurance navigation (3 items), (6) care transitions from oncologist to primary care (3 items), and (7) prevention and wellness services (5 items). All factors have excellent composite reliabilities (Cronbach's alpha 0.84-0.94, Coefficient of Omega: 0.81-0.94).ConclusionsProviding quality post-treatment care is critical for the long-term health and well-being of survivors. The PC-SCI defines a patient-centered approach to survivorship care to complement clinical practice guidelines. The PC-SCI has acceptable composite reliability, providing the field with a valid instrument of patient-centered survivorship care. The PC-SCI provides cancer centers with a means to guide, measure and monitor the development of their survivorship care to align with patient priorities of care.Trial registrationClinicalTrials.gov ID: NCT02362750 , 13 February 2015.
| S-EPMC8684610 | biostudies-literature
Project description:Background/AimsPatient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (2001) promulgates as essential to improving healthcare delivery. The National Cancer Institute?s Strategic Plan for Leading the Nation (2008) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders have different conceptualizations and assumptions about how to measure it. The purpose of our study was to develop a set of self-administered patient survey items for comprehensive PCC assessment.MethodsOur approach was grounded in the PCC conceptual framework, as presented in the NCI monograph, Patient-Centered Communication in Cancer Care (2007), which defines six functions of PCC:First, we developed a comprehensive inventory of measurement domains and subdomains, aligned with the PCC functions, by reviewing relevant literature, consulting experts, and conducting a small qualitative study involving patient interviews. Next, we inventoried over 100 survey and other measurement instruments, identifying over 1,300 possible items. We evaluated items using a systematic question appraisal system, adapted existing measures as appropriate, and developed new questions to fill identified gaps. Finally, we tested more than 200 survey questions with cancer patients (n=46) using cognitive interviews.ResultsOverall, the findings from the cognitive interviews suggest that the survey questions function well. Patients were generally able to understand the questions and apply them to their own experiences. Many participants reported that the questions reflected important aspects of their interaction with providers.ConclusionsThe draft PCC survey items can now be used for population surveillance, quality assessment, and intervention research in the context of cancer care. Although the survey items focus on PCC with respect to cancer care, many are relevant to all patients as patient-centered care is a goal for health care generally. We discuss challenges of PCC assessment, including measuring communication experiences across different care settings, types of clinicians, and stages in the cancer care continuum. Measuring PCC longitudinally over the course of care and balancing parsimony and comprehensiveness are important considerations.
| S-EPMC3251464 | biostudies-other
Project description:BackgroundMuch has been written about how the medical home model can enhance patient-centeredness, care continuity, and follow-up, but few comprehensive aids or resources exist to help practices accomplish these aims. The complexity of primary care can overwhelm those concerned with quality improvement.MethodsThe RE-AIM planning and evaluation model was used to develop a multimedia, multiple-health behavior tool with psychosocial assessment and feedback features to facilitate and guide patient-centered communication, care, and follow-up related to prevention and self-management of the most common adult chronic illnesses seen in primary care.ResultsThe Connection to Health Patient Self-Management System, a web-based patient assessment and support resource, was developed using the RE-AIM factors of reach (e.g., allowing input and output via choice of different modalities), effectiveness (e.g., using evidence-based intervention strategies), adoption (e.g., assistance in integrating the system into practice workflows and permitting customization of the website and feedback materials by practice teams), implementation (e.g., identifying and targeting actionable priority behavioral and psychosocial issues for patients and teams), and maintenance/sustainability (e.g., integration with current National Committee for Quality Assurance recommendations and clinical pathways of care). Connection to Health can work on a variety of input and output platforms, and assesses and provides feedback on multiple health behaviors and multiple chronic conditions frequently managed in adult primary care. As such, it should help to make patient-healthcare team encounters more informed and patient-centered. Formative research with clinicians indicated that the program addressed a number of practical concerns and they appreciated the flexibility and how the Connection to Health program could be customized to their office.ConclusionsThis primary care practice tool based on an implementation science model has the potential to guide patients to more healthful behaviors and improved self-management of chronic conditions, while fostering effective and efficient communication between patients and their healthcare team. RE-AIM and similar models can help clinicians and media developers create practical products more likely to be widely adopted, feasible in busy medical practices, and able to produce public health impact.
| S-EPMC3229439 | biostudies-literature
Project description:With advances in breast cancer (BC) gene panel testing, risk counseling has become increasingly complex, potentially leading to unmet psychosocial needs. We assessed psychosocial needs and correlates in women initiating testing for high genetic BC risk in clinics in France and Germany, and compared these results with data from a literature review. Among the 442 counselees consecutively approached, 212 (83%) in France and 180 (97%) in Germany, mostly BC patients (81% and 92%, respectively), returned the 'Psychosocial Assessment in Hereditary Cancer' questionnaire. Based on the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) BC risk estimation model, the mean BC lifetime risk estimates were 19% and 18% in France and Germany, respectively. In both countries, the most prevalent needs clustered around the "living with cancer" and "children-related issues" domains. In multivariate analyses, a higher number of psychosocial needs were significantly associated with younger age (b = -0.05), higher anxiety (b = 0.78), and having children (b = 1.51), but not with country, educational level, marital status, depression, or loss of a family member due to hereditary cancer. These results are in line with the literature review data. However, this review identified only seven studies that quantitatively addressed psychosocial needs in the BC genetic counseling setting. Current data lack understandings of how cancer risk counseling affects psychosocial needs, and improves patient-centered care in that setting.
| S-EPMC5858388 | biostudies-literature
Project description:ObjectiveEfficiently addressing patient priorities and concerns remains a challenge in oncology. Systematic operationalization of patient-centered care (PCC) can support improved assessment and practice of PCC in this unique care setting. This review aimed to synthesize the qualitative empirical literature exploring the National Academy of Medicine (NAM)'s PCC constructs of values, needs, and preferences among patients' during their cancer treatment experiences.MethodsA systematic review of qualitative studies published between 2002 and 2018 addressing adult patient values, needs, and preferences during cancer treatment was conducted. Medline, EMBASE, PsycINFO, and SCOPUS databases were searched on September 10, 2018. Methodological rigor was assessed using a modified version of the Evaluation Tool for Qualitative Studies. Included study findings were analyzed using line-by-line coding; and the emergent themes were compared to the National Academy of Medicine (NAM)'s PCC dimensions.ResultsTwenty-nine primary studies were included in the synthesis. Descriptive themes for values (autonomy, being involved, family, hope, normality, and sincerity), needs (care coordination, information, privacy, support of physical well-being, emotional support (family/friends, peer, provider), and self-support), and preferences (care coordination, decision-making, information delivery, source of social support, and treatment) were identified. "Cancer care context" emerged as an important domain in which these constructs are operationalized. This thematic framework outlines PCC attributes that oncology care stakeholders can evaluate to improve patient experiences.ConclusionsThese findings build on previous PCC research and may contribute to the systematic assessment of patient priorities and the improvement of oncology care quality from the patient perspective.
| S-EPMC7901502 | biostudies-literature
Project description:To assess the influence of patient preferences and urologist recommendations in treatment decisions for clinically localized prostate cancer.We enrolled 257 men with clinically localized prostate cancer (prostate-specific antigen <20; Gleason score 6 or 7) seen by urologists (primarily residents and fellows) in 4 Veterans Affairs medical centers. We measured patients' baseline preferences prior to their urology appointments, including initial treatment preference, cancer-related anxiety, and interest in sex. In longitudinal follow-up, we determined which treatment patients received. We used hierarchical logistic regression to determine the factors that predicted treatment received (active treatment v. active surveillance) and urologist recommendations. We also conducted a directed content analysis of recorded clinical encounters to determine if urologists discussed patients' interest in sex.Patients' initial treatment preferences did not predict receipt of active treatment versus surveillance, ??2(4) = 3.67, P = 0.45. Instead, receipt of active treatment was predicted primarily by urologists' recommendations, ??2(2) = 32.81, P < 0.001. Urologists' recommendations, in turn, were influenced heavily by medical factors (age and Gleason score) but were unrelated to patient preferences, ??2(6) = 0, P = 1. Urologists rarely discussed patients' interest in sex (<15% of appointments).Patients' treatment decisions were based largely on urologists' recommendations, which, in turn, were based on medical factors (age and Gleason score) and not on patients' personal views of the relative pros and cons of treatment alternatives.
| S-EPMC5587215 | biostudies-other
Project description:ObjectivesTo assess the patient preferences and utility scores for the different conventional and innovative treatment modalities for localised prostate cancer (PCa).Subjects and methodsPatients treated for localised PCa and healthy volunteers were invited to fill out a treatment-outcome scenario questionnaire. Participants ranked six different treatments for localised PCa from most to least favourable, prior to information. In a next step, treatment procedures, toxicity, risk of biochemical recurrence and follow-up regimen were comprehensibly described for each of the six treatments (i.e. treatment-outcome scenarios), after which patients re-ranked the six treatments. Additionally, participants gave a visual analogue scale (VAS) and time trade-off (TTO) score for each scenario. Differences between utility scores were tested by Friedman tests with post hoc Wilcoxon signed-rank tests.ResultsEighty patients and twenty-nine healthy volunteers were included in the study. Before receiving treatment-outcome scenario information, participants ranked magnetic resonance-guided adaptive radiotherapy most often as their first choice (35%). After treatment information was received, active surveillance was most often ranked as the first choice (41%). Utility scores were significantly different between the six treatment-outcome scenarios, and active surveillance, non- and minimal-invasive treatments received higher scores.ConclusionsActive surveillance and non-invasive treatment for localised PCa were the most preferred options by PCa patients and healthy volunteers and received among the highest utility scores. Treatment preferences change after treatment information is received.
| S-EPMC9931535 | biostudies-literature
Project description:Prostate cancer (PCa) is the second most common cancer in men, and the second leading cause of death from cancer in men. Many studies on PCa have been carried out, each taking much time before the data is collected and ready to be analyzed. However, on the internet there is already a wide range of PCa datasets available, which could be used for data mining, predictive modelling or other purposes, reducing the need to setup new studies to collect data. In the current scientific climate, moving more and more to the analysis of "big data" and large, international, multi-site projects using a modern IT infrastructure, these datasets could be proven extremely valuable. This review presents an overview of publicly available patient-centered PCa datasets, divided into three categories (clinical, genomics and imaging) and an "overall" section to enable researchers to select a suitable dataset for analysis, without having to go through days of work to find the right data. To acquire a list of human PCa databases, scientific literature databases and academic social network sites were searched. We also used the information from other reviews. All databases in the combined list were then checked for public availability. Only databases that were either directly publicly available or available after signing a research data agreement or retrieving a free login were selected for inclusion in this review. Data should be available to commercial parties as well. This paper focuses on patient-centered data, so the genomics data section does not include gene-centered databases or pathway-centered databases. We identified 42 publicly available, patient-centered PCa datasets. Some of these consist of different smaller datasets. Some of them contain combinations of datasets from the three data domains: clinical data, imaging data and genomics data. Only one dataset contains information from all three domains. This review presents all datasets and their characteristics: number of subjects, clinical fields, imaging modalities, expression data, mutation data, biomarker measurements, etc. Despite all the attention that has been given to making this overview of publicly available databases as extensive as possible, it is very likely not complete, and will also be outdated soon. However, this review might help many PCa researchers to find suitable datasets to answer the research question with, without the need to start a new data collection project. In the coming era of big data analysis, overviews like this are becoming more and more useful.
| S-EPMC6511704 | biostudies-literature
Project description:ObjectiveIn order to develop patient-centered care we need to know what patients want and how changing socio-demographic factors shape their preferences.MethodsWe fielded a structured questionnaire that included a discrete choice experiment to investigate women's preferences for place of delivery care in four rural districts of Pwani Region, Tanzania. The discrete choice experiment consisted of six attributes: kind treatment by the health worker, health worker medical knowledge, modern equipment and medicines, facility privacy, facility cleanliness, and cost of visit. Each woman received eight choice questions. The influence of potential supply- and demand- side factors on patient preferences was evaluated using mixed logit models.Results3,003 women participated in the discrete choice experiment (93% response rate) completing 23,947 choice tasks. The greatest predictor of health facility preference was kind treatment by doctor (β = 1.13, p<0.001), followed by having a doctor with excellent medical knowledge (β = 0.89 p<0.001) and modern medical equipment and drugs (β = 0.66 p<0.001). Preferences for all attributes except kindness and cost were changed with changes to education, primiparity, media exposure and distance to nearest hospital.ConclusionsCare quality, both technical and interpersonal, was more important than clinic inputs such as equipment and cleanliness. These results suggest that while basic clinic infrastructure is necessary, it is not sufficient for provision of high quality, patient-centered care. There is an urgent need to build an adequate, competent, and kind health workforce to raise facility delivery and promote patient-centered care.
| S-EPMC4532509 | biostudies-literature
Project description:Health information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing first-time HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and single-institution experience, these initial findings are encouraging and support further investigation.
| S-EPMC7293064 | biostudies-literature