Protocol for a scoping review exploring the use of patient-reported outcomes in adult social care.
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ABSTRACT: Introduction
Patient-reported outcomes (PROs) are measures of a person's own views of their health, functioning and quality of life. They are typically assessed using validated, self-completed questionnaires known as patient-reported outcome measures (PROMs). PROMs are used in healthcare settings to support care planning, clinical decision-making, patient-practitioner communication and quality improvement. PROMs have a potential role in the delivery of social care where people often have multiple and complex long-term health conditions. However, the use of PROMs in this context is currently unclear. The objective of this scoping review is to explore the evidence relating to the use of PROMs in adult social care.Methods and analyses
The electronic databases Medline (Ovid), PsychInfo (Ovid), ASSIA (ProQuest), Social Care Online (SCIE), Web of Science and EMBASE (Ovid) were searched on 29 September 2020 to identify eligible studies and other publically available documents published since 2010. A grey literature search and hand searching of citations and reference lists of the included studies will also be undertaken. No restrictions on study design or language of publication will be applied. Screening and data extraction will be completed independently by two reviewers. Quality appraisal of the included documents will use the Critical Appraisal Skills Programme and AACODS (Authority, Accuracy, Coverage, Objectivity, Date, Significance) checklists. A customised data charting table will be used for data extraction, with analysis of qualitative data using the framework method. The review findings will be presented as tables and in a narrative summary.Ethics and dissemination
Ethical review is not required as scoping reviews are a form of secondary data analysis that synthesise data from publically available sources. Review findings will be shared with service users and other relevant stakeholders and disseminated through a peer-reviewed publication and conference presentations. This protocol is registered on the Open Science Framework (www.osf.io).
SUBMITTER: Hughes SE
PROVIDER: S-EPMC8051391 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundPatient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are self-reporting tools that can measure important information about patients, such as health priorities, experience, and perception of outcome. The use of traditional objective measures such as vital signs and lab values can be supplemented with these self-reported patient measures to provide a more complete picture of a patient's health status. Machine learning, the use of computer algorithms that improve automatically through experience, is a powerful tool in health care that often does not use subjective information shared by patients. However, machine learning has largely been based on objective measures and has been developed without patient or public input. Algorithms often do not have access to critical information from patients and may be missing priorities and measures that matter to patients. Combining objective measures with patient-reported measures can improve the ability of machine learning algorithms to assess patients' health status and improve the delivery of health care.ObjectiveThe objective of this scoping review is to identify gaps and benefits in the way machine learning is integrated with patient-reported outcomes for the development of improved public and patient partnerships in research and health care.MethodsWe reviewed the following 3 questions to learn from existing literature about the reported gaps and best methods for combining machine learning and patient-reported outcomes: (1) How are the public engaged as involved partners in the development of artificial intelligence in medicine? (2) What examples of good practice can we identify for the integration of PROMs into machine learning algorithms? (3) How has value-based health care influenced the development of artificial intelligence in health care? We searched Ovid MEDLINE(R), Embase, PsycINFO, Science Citation Index, Cochrane Library, and Database of Abstracts of Reviews of Effects in addition to PROSPERO and the ClinicalTrials website. The authors will use Covidence to screen titles and abstracts and to conduct the review. We will include systematic reviews and overviews published in any language and may explore additional study types. Quantitative, qualitative, and mixed methods studies are included in the reviews.ResultsThe search is completed, and Covidence software will be used to work collaboratively. We will report the review using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and Critical Appraisal Skills Programme for systematic reviews.ConclusionsFindings from our review will help us identify examples of good practice for how to involve the public in the development of machine learning systems as well as interventions and outcomes that have used PROMs and PREMs.International registered report identifier (irrid)DERR1-10.2196/36395.
| S-EPMC9345029 | biostudies-literature
Project description:BackgroundIn palliative oncology settings, electronic patient-reported outcome (PRO) assessment can play an important role in supporting clinical activities for clinicians and patients. This scoping review aims to map the technological innovation of electronic patient-reported outcome measures (e-PROMs) in cancer palliative care and how PRO data collected through e-PROMs can influence the monitoring and management of symptoms and enable better communication between health professionals and patients.MethodsA scoping review study was designed according to the Arksey and O'Malley framework. Medline, Embase, Web of Science, SCOPUS, PsycINFO and CINAHL and gray literature sources were consulted. The inclusion criteria were people over 18 years old receiving palliative and/or end-of-life care using e-PROMs.ResultsThirteen primary studies were included: nine quantitative studies, two qualitative studies, and two mixed-method studies. The recently developed software that supports e-PROMs allows patients to receive feedback on their symptoms, helps clinicians prioritize care needs and monitors patients' conditions as their symptoms change. Electronic PRO data prompt difficult, end-of-life communication between clinicians and patients to better organize care in the last phase of life.ConclusionThis work shows that electronic PRO data assessment provides valuable tools for patients' well-being and the management of symptoms; only one study reported conflicting results. However, with studies lacking on how clinicians can use these tools to improve communication with patients, more research is needed.
| S-EPMC9500127 | biostudies-literature
Project description:IntroductionFollowing a cancer diagnosis, patients and their caregivers face crucial decisions regarding goals of care and treatment, which have consequences that can persist throughout their cancer journey. To foster informed and value-driven treatment choices, evidence-based information on outcomes relevant to patients is needed. Traditionally, clinical studies have largely focused on a few concrete and easily measurable outcomes such as survival, disease progression and immediate treatment toxicities. These outcomes do not capture other important factors that patients consider when making treatment decisions. Patient-centred outcomes (PCOs) reflect the patients' individual values, preferences, needs and circumstances that are essential to directing meaningful and informed healthcare discussions. Often, however, these outcomes are not included in research protocols in a standardised and practical fashion. This scoping review will summarise the existing literature on PCOs in gastrointestinal (GI) cancer care as well as the tools used to assess these outcomes. A comprehensive list of these PCOs will be generated for future efforts to develop a core outcome set.Methods and analysisThis scoping review will follow Arksey and O'Malley's expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL, Cochrane Library and APA PsycINFO databases for studies examining PCOs in the context of GI cancer. We will include studies published in or after the year 2000 up to the date of the final searches, with no language restrictions. Studies involving adult patients with GI cancers and discussion of any PCOs will be included. Opinion pieces, protocols, case reports and abstracts will be excluded. Two authors will independently perform two rounds of screening to select studies for inclusion. The data from full texts will be extracted, charted and summarised both quantitatively and qualitatively.Ethics and disseminationNo ethics approval is required for this scoping review. Results will be disseminated through scientific publication and presentation at relevant conferences.
| S-EPMC9198790 | biostudies-literature
Project description:BackgroundThere exists scant evidence on the optimal approaches to integrating patient-reported outcomes (PROs) in clinical practice. This study gathered oncology practitioners' experiences with implementing PROs in cancer care.MethodsBetween December 2019 and June 2020, we surveyed practitioners who reported spending > 5% of their time providing clinical care to cancer patients. Respondents completed an online survey describing their experiences with and barriers to using PROs in clinical settings.ResultsIn total, 362 practitioners (physicians 38.7%, nurses 46.7%, allied health professionals 14.6%) completed the survey, representing 41 countries (Asia-Pacific 42.5%, North America 30.1%, Europe 24.0%, others 3.3%). One quarter (25.4%) identified themselves as "high frequency users" who conducted PRO assessments on > 80% of their patients. Practitioners commonly used PROs to facilitate communication (60.2%) and monitor treatment responses (52.6%). The most commonly reported implementation barriers were a lack of technological support (70.4%) and absence of a robust workflow to integrate PROs in clinical care (61.5%). Compared to practitioners from high-income countries, more practitioners in low-middle income countries reported not having access to a local PRO expert (P < .0001) and difficulty in identifying the appropriate PRO domains (P = .006). Compared with nurses and allied health professionals, physicians were more likely to perceive disruptions in clinical care during PRO collection (P = .001) as an implementation barrier.ConclusionsOnly a quarter of the surveyed practitioners reported capturing PROs in routine clinical practice. The implementation barriers to PRO use varied across respondents in different professions and levels of socioeconomic resources. Our findings can be applied to guide planning and implementation of PRO collection in cancer care.
| S-EPMC8440726 | biostudies-literature
Project description:BackgroundPatient-reported data are widely used for many purposes by different actors within a health system. However, little is known about the use of such data by health insurers. Our study aims to map the evidence on the use of patient-reported data by health insurers; to explore how collected patient-reported data are utilized; and to elucidate the motives of why patient-reported data are collected by health insurers.MethodsThe study design is that of a scoping review. In total, 11 databases were searched on. Relevant grey literature was identified through online searches, reference mining and recommendations from experts. Forty-two documents were included. We synthesized the evidence on the uses of patient-reported data by insurers following a structure-process-outcome approach; we also mapped the use and function of those data by a health insurer.ResultsHealth insurers use patient-reported data for assurance and improvement of quality of care and value-based health care. The patient-reported data most often collected are those of outcomes, experiences and satisfaction measures; structure indicators are used to a lesser extent and often combined with process indicators. These data are mainly used for the purposes of procurement and purchasing of services, quality assurance, improvement and reporting, and strengthening the involvement of insured people.ConclusionsThe breadth to which insurers use patient-reported data in their business models varies greatly. Some hindering factors to the uptake of such data are the varying and overlapping terminology in use in the field and the limited involvement of insured people in a health insurer's business. Health insurers are advised to be more explicit in regard to the role they want to play within the health system and society at large, and accommodate implications for the use of patient-reported data accordingly.
| S-EPMC7769438 | biostudies-literature
Project description:IntroductionDespite the use of a wide variety of improvement tools and approaches, healthcare organisations continue to struggle in several key areas. Complexity-informed approaches have the potential to offer health and social care a new paradigm for understanding, designing, implementing and evaluating solutions, yet so far has failed to gain the traction anticipated some years ago. There is a growing need for high quality syntheses of the existing knowledge base in this area and given the diversity of theory and approaches, a scoping review is the best approach to curate this knowledge.MethodsA scoping review of relevant literature from January 2000 to present, using the refined Arksey and O'Malley six-stage framework will be conducted. This protocol will follow the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols Extension for Scoping Reviews. A three-step search strategy will be used. An initial search of databases will be undertaken to identify key search terms followed by an analysis of retrieved papers title and abstract text words, and of index terms used to describe the articles. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference lists of identified reports and articles will be searched. Authors of primary articles will be contacted and a search for grey material performed. Finally, a complete search strategy of one major database will be included.Ethics and disseminationAs this is a scoping review, ethical approval is not required. The results of the scoping review will be published in a peer-reviewed journal and presented at national and international conferences and will guide a large research project investigating teamwork. All data will be stored in accordance with best General Data Protection Regulation practice.RegistrationThis scoping review protocol has been registered with Open Science Framework.
| S-EPMC8319978 | biostudies-literature
Project description:ObjectiveVirtual reality is increasingly used in healthcare settings. Potentially, it's use in palliative carecould have a positive impact; however, there is limited evidence on the scope, purpose and patient outcomes relating to virtual reality use in this context. The objective of this scoping review is to chart the literature on virtual reality use in palliative care, identifying any evidence relating to biopsychosocial patient outcomes which could support its use in practice.MethodsA scoping review of the literature, involving . a systematic search across 10 electronic bibliographic databases in December 2021, . Eligibility criteria were primary research studies, of any research designwithin a 10-year timeframe, which reported on virtual reality use and patient outcomes in palliative care. A total of 993 papers were identified, andcomprehensive screening resulted in 10 papers for inclusion.ResultsThis scoping review identified 10 papers addressing virtual reality in palliative care, published within a three-year timeframe 2019-2021. Research methodologies included mixed methods, quantitative and qualitative. The evidence highlightsvirtual reality use with patients receiving palliative care in a variety of settings, and data around useability, feasibility and acceptability is positive. However, the evidence regarding biopsychosocial patient outcomes linked to virtual reality use is limited.ConclusionVirtual reality is gathering momentum in palliative care and is potentially a helpful intervention; however more research is needed to underpin the evidence base supporting its application, particularly in understanding the impact on biopsychosocial patient outcomes and ascertaining the best approach for measuring intervention effectiveness.
| S-EPMC10621306 | biostudies-literature
Project description:BackgroundIn recent decades, the literature on Social Network Analysis and health has experienced a significant increase. Disease transmission, health behavior, organizational networks, social capital, and social support are among the different health areas where Social Network Analysis has been applied. The current epidemiological trend is characterized by a progressive increase in the population's ageing and the incidence of long-term conditions. Thus, it seems relevant to highlight the importance of social support and care systems to guarantee the coverage of health and social needs within the context of acute illness, chronic disease, and disability for patients and their carers. Thus, the main aim is to identify, categorize, summarize, synthesize, and map existing knowledge, literature, and evidence about the use of Social Network Analysis to study social support and care in the context of illness and disability.MethodsThis scoping review will be conducted following Arksey and O'Malley's framework with adaptations from Levac et al. and Joanna Briggs Institute's methodological guidance for conducting scoping reviews. We will search the following databases (from January 2000 onwards): PubMed, MEDLINE, Web of Science Core Collection, SCOPUS, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, PROSPERO, and DARE. Complementary searches will be conducted in selected relevant journals. Only articles related to social support or care in patients or caregivers in the context of acute illnesses, disabilities or long-term conditions will be considered eligible for inclusion. Two reviewers will screen all the citations, full-text articles, and abstract the data independently. A narrative synthesis will be provided with information presented in the main text and tables.DiscussionThe knowledge about the scientific evidence available in the literature, the methodological characteristics of the studies identified based on Social Network Analysis, and its main contributions will highlight the importance of health-related research's social and relational dimensions. These results will shed light on the importance of the structure and composition of social networks to provide social support and care and their impact on other health outcomes. It is anticipated that results may guide future research on network-based interventions that might be considered drivers to provide further knowledge in social support and care from a relational approach at the individual and community levels.Trial registrationOpen Science Framework https://osf.io/dqkb5 .
| S-EPMC8751069 | biostudies-literature
Project description:BACKGROUND:Providing patient-centered health care requires that patient needs, preferences, and valued outcomes are more fully integrated into all decisions. Patient-reported outcome (PRO) measures provide unique information from the patient perspective on overall health, symptoms, burden, and treatment response. OBJECTIVE:We sought to describe applications of PROs in clinical settings and considerations for implementation from the perspectives of PRO researchers, clinicians, administrators, policy makers, and patients attending a multidisciplinary meeting. DISCUSSION:Clinical applications of PROs include individual level use for medical decision making and aggregate use for comparative effectiveness research, program evaluation, quality improvement, and performance assessments. Considerations of feasibility on workflow impact and patient burden, display of results, and administration frequency are important. PROs with strong psychometric properties, actionable thresholds, and interpretable results should be selected. We provide current exemplars of PRO use in various clinical applications, initial lessons learned, and highlight conceptual, logistical, and consequential considerations of PRO data collection. A research agenda is proposed to address critical knowledge gaps. In conclusion, PROs can be used in clinical settings to support patient-centered care. This requires an assessment of feasibility in the intended setting of use, measurement considerations, and process measures to optimize integration and use.
| S-EPMC6529209 | biostudies-literature
Project description:BackgroundDigital health technologies can support primary care delivery, but clinical uptake in primary care is limited. This study explores enablers and barriers experienced by primary care providers when adopting new digital health technologies, using the example of the electronic Patient Reported Outcome (ePRO) tool; a mobile application and web portal designed to support goal-oriented care. To better understand implementation drivers and barriers primary care providers' usage behaviours are compared to their perspectives on ePRO utility and fit to support care for patients with complex care needs.MethodsThis qualitative sub-analysis was part of a larger trial evaluating the use of the ePRO tool in primary care. Qualitative interviews were conducted with providers at the midpoint (i.e. 4.5-6 months after ePRO implementation) and end-point (i.e. 9-12 months after ePRO implementation) of the trial. Interviews explored providers' experiences and perceptions of integrating the tool within their clinical practice. Interview data were analyzed using a hybrid thematic analysis and guided by the Technology Acceptance Model. Data from thirteen providers from three distinct primary care sites were included in the presented study.ResultsThree core themes were identified: (1) Perceived usefulness: perceptions of the tool's alignment with providers' typical approach to care, impact and value and fit with existing workflows influenced providers' intention to use the tool and usage behaviour; (2) Behavioural intention: providers had a high or low behavioural intention, and for some, it changed over time; and (3) Improving usage behaviour: enabling external factors and enhancing the tool's perceived ease of use may improve usage behaviour.ConclusionsMultiple refinements/iterations of the ePRO tool (e.g. enhancing the tool's alignment with provider workflows and functions) may be needed to enhance providers' usage behaviour, perceived usefulness and behavioural intention. Enabling external factors, such as organizational and IT support, are also necessary to increase providers' usage behaviour. Lessons from this study advance knowledge of technology implementation in primary care.Trial registrationClinicaltrials.gov Identified NCT02917954. Registered September 2016, https://www.clinicaltrials.gov/ct2/show/study/NCT02917954.
| S-EPMC8714873 | biostudies-literature