Patient and provider experiences with active surveillance: A scoping review.
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ABSTRACT:
SUBMITTER: Kim C
PROVIDER: S-EPMC5798833 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
Publications
Patient and provider experiences with active surveillance: A scoping review.
Kim Claire C Wright Frances C FC Look Hong Nicole J NJ Groot Gary G Helyer Lucy L Meiers Pamela P Quan May Lynn ML Urquhart Robin R Warburton Rebecca R Gagliardi Anna R AR
PloS one 20180205 2
<h4>Objective</h4>Active surveillance (AS) represents a fundamental shift in managing select cancer patients that initiates treatment only upon disease progression to avoid overtreatment. Given uncertain outcomes, patient engagement could support decision-making about AS. Little is known about how to optimize patient engagement for AS decision-making. This scoping review aimed to characterize research on patient and provider communication about AS, and associated determinants and outcomes.<h4>Me ...[more]
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Project description:BackgroundA frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results.ObjectiveThis scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals.MethodsPRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles-20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated.ResultsPatient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes.ConclusionsThe timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.
| S-EPMC10623227 | biostudies-literature
Project description:PURPOSE:Prognostic and treatment uncertainty make ductal carcinoma in situ (DCIS) complex to manage. The purpose of this study was to describe research that evaluated DCIS communication experiences, needs and interventions among DCIS patients or physicians. METHODS:MEDLINE, EMBASE, CINAHL and The Cochrane Library were searched from inception to February 2017. English language studies that evaluated patient or physician DCIS needs, experiences or behavioural interventions were eligible. Screening and data extraction were done in duplicate. Summary statistics were used to describe study characteristics and findings. RESULTS:A total of 51 studies published from 1997 to 2016 were eligible for review, with a peak of 8 articles in year 2010. Women with DCIS lacked knowledge about the condition and its prognosis, although care partners were more informed, desired more information and experienced decisional conflict. Many chose mastectomy or prophylactic mastectomy, often based on physician's recommendation. Following treatment, women had anxiety and depression, often at levels similar to those with invasive breast cancer. Disparities were identified by education level, socioeconomic status, ethnicity and literacy. Physicians said that they had difficulty explaining DCIS and many referred to DCIS as cancer. Despite the challenges reported by patients and physicians, only two studies developed interventions designed to improve patient-physician discussion and decision-making. CONCLUSIONS:As most women with DCIS undergo extensive treatment, and many experience treatment-related complications, the paucity of research on PE to improve and support informed decision-making for DCIS is profound. Research is needed to improve patient and provider discussions and decision-making for DCIS management.
| S-EPMC5842253 | biostudies-literature
Project description:BackgroundPatients with chronic conditions require ongoing care which not only necessitates support from health care providers outside appointments but also self-management. Web-based tools for text-based patient-provider communication, such as secure messaging, allow for sharing of contextual information and personal narrative in a simple accessible medium, empowering patients and enabling their providers to address emerging care needs.ObjectiveThe objectives of this study were to (1) conduct a systematic search of the published literature and the Internet for Web-based tools for text-based communication between patients and providers; (2) map tool characteristics, their intended use, contexts in which they were used, and by whom; (3) describe the nature of their evaluation; and (4) understand the terminology used to describe the tools.MethodsWe conducted a scoping review using the MEDLINE (Medical Literature Analysis and Retrieval System Online) and EMBASE (Excerpta Medica Database) databases. We summarized information on the characteristics of the tools (structure, functions, and communication paradigm), intended use, context and users, evaluation (study design and outcomes), and terminology. We performed a parallel search of the Internet to compare with tools identified in the published literature.ResultsWe identified 54 papers describing 47 unique tools from 13 countries studied in the context of 68 chronic health conditions. The majority of tools (77%, 36/47) had functions in addition to communication (eg, viewable care plan, symptom diary, or tracker). Eight tools (17%, 8/47) were described as allowing patients to communicate with the team or multiple health care providers. Most of the tools were intended to support communication regarding symptom reporting (49%, 23/47), and lifestyle or behavior modification (36%, 17/47). The type of health care providers who used tools to communicate with patients were predominantly allied health professionals of various disciplines (30%, 14/47), nurses (23%, 11/47), and physicians (19%, 9/47), among others. Over half (52%, 25/48) of the tools were evaluated in randomized controlled trials, and 23 tools (48%, 23/48) were evaluated in nonrandomized studies. Terminology of tools varied by intervention type and functionality and did not consistently reflect a theme of communication. The majority of tools found in the Internet search were patient portals from 6 developers; none were found among published articles.ConclusionsWeb-based tools for text-based patient-provider communication were identified from a wide variety of clinical contexts and with varied functionality. Tools were most prevalent in contexts where intended use was self-management. Few tools for team-based communication were found, but this may become increasingly important as chronic disease care becomes more interdisciplinary.
| S-EPMC5681721 | biostudies-literature
Project description:Background and objectivesNew payment models resulting from the Advancing American Kidney Health initiative may create incentives for nephrologists to focus less on face-to-face in-center hemodialysis visits. This study aimed to understand whether more frequent nephrology practitioner dialysis visits improved patient experience and could help inform future policy.Design, setting, participants, & measurementsIn a cross-sectional study of patients receiving dialysis from April 1, 2015 through January 31, 2016, we linked patient records from a national kidney failure registry to patient experience data from the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey. We used a multivariable mixed effects linear regression model to examine the association between nephrology practitioner visit frequency and patient-reported experiences with nephrologist care.ResultsAmong 5125 US dialysis facilities, 2981 (58%) had ≥30 In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems surveys completed between April 2015 and January 2016, and 243,324 patients receiving care within these facilities had Medicare Parts A/B coverage. Face-to-face practitioner visits per month were 71% with four or more visits, 17% with two to three visits, 4% with one visit, and 8% with no visits. Each 10% absolute greater proportion of patients seen by their nephrology practitioner(s) four or more times per month was associated with a modestly but statistically significant lower score of patient experience with nephrologist care by -0.3 points (95% confidence interval, -0.5 to -0.1) and no effect on experience with other domains of dialysis care.ConclusionsIn an analysis of patient experiences at the dialysis facility level, frequent nephrology practitioner visits to facilities where patients undergo outpatient hemodialysis were not associated with better patient experiences.
| S-EPMC8425623 | biostudies-literature
Project description:ContextImplicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices.ObjectiveThis study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE).DesignA scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O'Malley.Data collectionA search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisArticles included were charted for general information. All "results" sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles.ResultsThe search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers.ConclusionThis scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers' discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.
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Project description:Policy Points This scoping review reveals a growing literature on the effects of certain state opioid misuse prevention policies, but persistent gaps in evidence on other prevalent state policies remain. Policymakers interested in reducing the volume and dosage of opioids prescribed and dispensed can consider adopting robust prescription drug monitoring programs with mandatory access provisions and drug supply management policies, such as prior authorization policies for high-risk prescription opioids. Further research should concentrate on potential unintended consequences of opioid misuse prevention policies, differential policy effects across populations, interventions that have not received sufficient evaluation (eg, Good Samaritan laws, naloxone access laws), and patient-related outcomes.ContextIn the midst of an opioid crisis in the United States, an influx of state opioid misuse prevention policies has provided new opportunities to generate evidence of policy effectiveness that can inform policy decisions. We conducted a scoping review to synthesize the available evidence on the effectiveness of US state interventions to improve patient and provider outcomes related to opioid misuse and addiction.MethodsWe searched six online databases to identify evaluations of state opioid policies. Eligible studies examined legislative and administrative policy interventions that evaluated (a) prescribing and dispensing, (b) patient behavior, or (c) patient health.FindingsSeventy-one articles met our inclusion criteria, including 41 studies published between 2016 and 2018. These articles evaluated nine types of state policies targeting opioid misuse. While prescription drug monitoring programs (PDMPs) have received considerable attention in the literature, far fewer studies addressed other types of state policy. Overall, evidence quality is very low for the majority of policies due to a small number of evaluations. Of interventions that have been the subject of considerable research, promising means of reducing the volume and dosages of opioids prescribed and dispensed include drug supply management policies and robust PDMPs. Due to low study number and quality, evidence is insufficient to draw conclusions regarding interventions targeting patient behavior and health outcomes, including naloxone access laws and Good Samaritan laws.ConclusionsRecent research has improved the evidence base on several state interventions targeting opioid misuse. Specifically, moderate evidence suggests that drug supply management policies and robust PDMPs reduce opioid prescribing. Despite the increase in rigorous evaluations, evidence remains limited for the majority of policies, particularly those targeting patient health-related outcomes.
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Project description:ObjectiveCurrently, active surveillance systems to monitor adverse events following immunisation are limited to hospitals, and medical and immunisation clinics. Globally, community pharmacies represent a significant destination for immunisation services. However, until recently, pharmacies lacked active surveillance systems. We therefore wished to explore pharmacists' experiences with SmartVax: an active surveillance system that has recently been integrated for use in Australian community pharmacies. Specifically, we wished to explore pharmacists' perceived (1) benefits of using SmartVax, (2) areas for improvement in the system, and (3) issues with future/ongoing access to the system.MethodsThe present study forms the qualitative arm of a convergent mixed-methods pilot study. In the present study, we performed semi-structured interviews with pharmacist immunisers after a 21- to 22-week trial period with SmartVax. Thematic analysis of interview transcripts was performed independently by two researchers in QSR NVivo 12, using the framework method.ResultsFifteen participants completed the semi-structured interviews. A broad range of perceived benefits were cited by participants, including the usability of SmartVax, the ease of patient follow-up facilitated by the system, and enhancement to the patient-pharmacist relationship. Participants voiced a desire for the system to have more granularity and a faster response time in the report generated for pharmacies. When asked about issues with future/ongoing access to SmartVax, cost concerns of the system were the prevailing theme.ConclusionsThe present study suggests that, among pharmacist immuniser end-users of SmartVax, the system is perceived to be easy-to-use, facilitates patient follow-up, and enhances the patient-pharmacist relationship.
| S-EPMC8488908 | biostudies-literature
Project description:BackgroundInvolving community members in identifying and reporting health events for public health surveillance purposes, an approach commonly described as community-based surveillance (CBS), is increasingly gaining interest. We conducted a scoping review to list terms and definitions used to characterize CBS, to identify and summarize available guidance and recommendations, and to map information on past and existing in-country CBS systems.MethodsWe searched eight bibliographic databases and screened the worldwide web for any document mentioning an approach in which community members both collected and reported information on health events from their community for public health surveillance. Two independent reviewers performed double blind screening and data collection, any discrepancy was solved through discussion and consensus.FindingsFrom the 134 included documents, several terms and definitions for CBS were retrieved. Guidance and recommendations for CBS were scattered through seven major guides and sixteen additional documents. Seventy-nine unique CBS systems implemented since 1958 in 42 countries were identified, mostly implemented in low and lower-middle income countries (79%). The systems appeared as fragmented (81% covering a limited geographical area and 70% solely implemented in a rural setting), vertical (67% with a single scope of interest), and of limited duration (median of 6 years for ongoing systems and 2 years for ended systems). Collection of information was mostly performed by recruited community members (80%).InterpretationWhile CBS has already been implemented in many countries, standardization is still required on the term and processes to be used. Further research is needed to ensure CBS integrates effectively into the overall public health surveillance system.
| S-EPMC6461245 | biostudies-literature
Project description:BackgroundThe uptake of digital health technology (DHT) has been surprisingly low in clinical practice. Despite showing great promise to improve patient outcomes and disease management, there is limited information on the factors that contribute to the limited adoption of DHT, particularly for hypertension management.ObjectiveThis scoping review provides a comprehensive summary of barriers to and facilitators of DHT adoption for hypertension management reported in the published literature with a focus on provider- and patient-related barriers and facilitators.MethodsThis review followed the methodological framework developed by Arskey and O'Malley. Systematic literature searches were conducted on PubMed or Medical Literature Analysis and Retrieval System Online, Cumulative Index to Nursing and Allied Health Literature, and Excerpta Medica database. Articles that reported on barriers to and/or facilitators of digital health adoption for hypertension management published in English between 2008 and 2017 were eligible. Studies not reporting on barriers or facilitators to DHT adoption for management of hypertension were excluded. A total of 2299 articles were identified based on the above criteria after removing duplicates, and they were assessed for eligibility. Of these, 2165 references did not meet the inclusion criteria. After assessing 134 studies in full text, 98 studies were excluded (full texts were either unavailable or studies did not fulfill the inclusion criteria), resulting in a final set of 32 articles. In addition, 4 handpicked articles were also included in the review, making it a total of 36 studies.ResultsA total of 36 studies were selected for data extraction after abstract and full-text screening by 2 independent reviewers. All conflicts were resolved by a third reviewer. Thematic analysis was conducted to identify major themes pertaining to barriers and facilitators of DHT from both provider and patient perspectives. The key facilitators of DHT adoption by physicians that were identified include ease of integration with clinical workflow, improvement in patient outcomes, and technology usability and technical support. Technology usability and timely technical support improved self-management and patient experience, and positive impact on patient-provider communication were most frequently reported facilitators for patients. Barriers to use of DHTs reported by physicians include lack of integration with clinical workflow, lack of validation of technology, and lack of technology usability and technical support. Finally, lack of technology usability and technical support, interference with patient-provider relationship, and lack of validation of technology were the most commonly reported barriers by patients.ConclusionsFindings suggest the settings and context in which DHTs are implemented and individuals involved in implementation influence adoption. Finally, to fully realize the potential of digitally enabled hypertension management, there is a greater need to validate these technologies to provide patients and providers with reliable and accurate information on both clinical outcomes and cost effectiveness.
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Project description:IntroductionEarly identification of patients who may suffer from unexpected adverse events (eg, sepsis, sudden cardiac arrest) gives bedside staff valuable lead time to care for these patients appropriately. Consequently, many machine learning algorithms have been developed to predict adverse events. However, little research focuses on how these systems are implemented and how system design impacts clinicians' decisions or patient outcomes. This protocol outlines the steps to review the designs of these tools.Methods and analysisWe will use scoping review methods to explore how tools that leverage machine learning algorithms in predicting adverse events are designed to integrate into clinical practice. We will explore the types of user interfaces deployed, what information is displayed, and how clinical workflows are supported. Electronic sources include Medline, Embase, CINAHL Complete, Cochrane Library (including CENTRAL), and IEEE Xplore from 1 January 2009 to present. We will only review primary research articles that report findings from the implementation of patient deterioration surveillance tools for hospital clinicians. The articles must also include a description of the tool's user interface. Since our primary focus is on how the user interacts with automated tools driven by machine learning algorithms, electronic tools that do not extract data from clinical data documentation or recording systems such as an EHR or patient monitor, or otherwise require manual entry, will be excluded. Similarly, tools that do not synthesise information from more than one data variable will also be excluded. This review will be limited to English-language articles. Two reviewers will review the articles and extract the data. Findings from both researchers will be compared with minimise bias. The results will be quantified, synthesised and presented using appropriate formats.Ethics and disseminationEthics review is not required for this scoping review. Findings will be disseminated through peer-reviewed publications.
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