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Medical Care Jul 2023Patients are increasingly interested in data on the economic burdens and impacts of health care choices; caregivers, employers, and payers are also interested in these...
BACKGROUND
Patients are increasingly interested in data on the economic burdens and impacts of health care choices; caregivers, employers, and payers are also interested in these costs. Although there have been various federal investments into patient-centered outcomes research (PCOR), an assessment of the coverage and gaps in federally funded data for PCOR economic evaluations has not been produced to date.
OBJECTIVES
To classify relevant categories of PCOR economic costs, to assess current federally funded data for coverage of these categories, and to identify gaps for future research and collection.
RESEARCH DESIGN
A targeted internet search was conducted to identify a list of relevant outcomes and data sources. The study team assessed data sources for coverage of economic outcomes. A technical panel and key informant interviews were used for evaluation and feedback.
RESULTS
Four types of formal health care sector costs, 3 types of informal health care sector costs, and 10 types of non-health care sector costs were identified as relevant for PCOR economic evaluations. Twenty-nine federally funded data sources were identified. Most contained elements on formal costs. Data on informal costs (eg, transportation) were less common, and non-health care sector costs (eg, productivity) were the least common. Most data sources were annual, cross-sectional, nationally representative individual-level surveys.
CONCLUSIONS
The existing federal data infrastructure captures many areas of the economic burden of health and health care, but gaps remain. Research from multiple data sources and potential future integrations may offset gaps in individual data sources. Linkages are promising strategies for future research on patient-centered economic outcomes.
Topics: Humans; Cross-Sectional Studies; Patient Outcome Assessment; Delivery of Health Care; Caregivers; Outcome Assessment, Health Care
PubMed: 37219065
DOI: 10.1097/MLR.0000000000001862 -
Current Problems in Pediatric and... Dec 2021Healthcare and outcomes for children with medical complexity (CMC) and their families can be improved by conducting well-conceived, designed, implemented, and analyzed...
Healthcare and outcomes for children with medical complexity (CMC) and their families can be improved by conducting well-conceived, designed, implemented, and analyzed research studies of clinical interventions. This article presents a framework for how to approach the study of clinical interventions for CMC, including 7 key questions and example answers to each: (1) What intervention questions should be our focus? (2) What barriers to intervention research exist? (3) How do we design and optimize interventions? (4) How do we characterize and select patients to enroll? (5) How can we enhance data collection and integration? (6) How can we improve enrollment and participation? And (7) which intervention experimental designs should we choose? By exploring each of these key aspects of intervention-based research, we hope to expand thinking about and spark ideas for specific research projects focused on clinical interventions for CMC.
Topics: Child; Humans; Outcome Assessment, Health Care; Pediatrics
PubMed: 34996708
DOI: 10.1016/j.cppeds.2021.101126 -
Heart (British Cardiac Society) May 2022The UK is one of the few countries in the world with national registries that record key statistics across a broad range of cardiovascular disorders. The British... (Review)
Review
The UK is one of the few countries in the world with national registries that record key statistics across a broad range of cardiovascular disorders. The British Cardiovascular Society and its affiliated groups have played a central role in the development of these registries and continue to provide clinical oversight to the present day. Seven of the UK's national registries are now integrated under the management of the National Institute for Cardiovascular Outcomes Research (NICOR) that currently holds records on nearly 6.5 million episodes of care since 1990. This represents a substantial data resource for national audit that has driven up standards of cardiovascular care in the UK with a palpable impact on patient outcomes. The registries have also spawned an impressive programme of research providing novel insights into the epidemiology of cardiovascular disease. Linkage with other datasets and international collaborations create the environment for new outputs, new opportunities for 'big data' research and new ways of performing clinical trials. As the centenary of the British Cardiac Society (now British Cardiovascular Society) approaches, its role in the development of the UK's cardiovascular audits can be counted as one of its outstanding achievements.
Topics: Academies and Institutes; Cardiovascular Diseases; Heart; Humans; Outcome Assessment, Health Care; Registries
PubMed: 35131894
DOI: 10.1136/heartjnl-2021-320151 -
International Journal of Technology... Jun 2023The Patient-Centered Outcomes Research Institute (PCORI) is a nonprofit, nongovernmental organization established by the U.S. Congress to fund comparative clinical... (Review)
Review
The Patient-Centered Outcomes Research Institute (PCORI) is a nonprofit, nongovernmental organization established by the U.S. Congress to fund comparative clinical effectiveness research focusing on patient-centered outcomes through the engagement of stakeholders. Evaluation of emerging healthcare innovations is one of PCORI's five National Priorities for Health. One such initiative is PCORI's Emerging Technologies and Therapeutics Reports program, established to provide timely overviews of evidence on new drugs and other healthcare technologies. This article provides an overview of completed and ongoing Emerging Technologies and Therapeutics Reports including lessons learned to date. In addition to systematic searches, systematic selection of studies, and transparent reporting of the available evidence, informed by a select number of stakeholders (i.e., key informants), these reports focus on contextual factors shaping the diffusion of emerging technologies that are often not reported in the medical literature. This article also compares processes and methodologies of health technology assessments (HTAs) from a selected number of national and international publicly funded agencies with a goal toward potential future enhancement of PCORI's Emerging Technologies and Therapeutics Reports program. HTAs vary considerably in terms of funding, types of assessments, the role of manufacturers, stakeholder engagement, timeline to complete from the start to the finish of a draft report publication, and communication of uncertainty for informed decision making. Future Emerging Technologies and Therapeutics Reports may focus on rapid reports to support a more expedient development of evidence. Future research could explore the role of contextual factors identified in these reports on targeted evidence generation.
Topics: Humans; Patient Outcome Assessment; Outcome Assessment, Health Care; Health Facilities; Delivery of Health Care; Academies and Institutes
PubMed: 37336780
DOI: 10.1017/S0266462323000284 -
Journal of Medical Economics Nov 2021
Topics: Asia; Developing Countries; Economics, Medical; Humans; Outcome Assessment, Health Care
PubMed: 34859736
DOI: 10.1080/13696998.2021.2014164 -
Nature Reviews. Clinical Oncology May 2016Symptomatic toxicities associated with anticancer treatments, such as nausea and vomiting, are frequently underreported by clinicians, even when data are prospectively... (Review)
Review
Symptomatic toxicities associated with anticancer treatments, such as nausea and vomiting, are frequently underreported by clinicians, even when data are prospectively collected within clinical trials. Such underreporting can result in an underestimation of the absolute rate of toxicity, which is highly relevant information for patients and their physicians in clinical practice, and for regulatory authorities. Systematic collection of patient-reported outcomes (PROs) has been demonstrated to be a valid, reliable, feasible and precise approach to tabulating symptomatic toxicities and enables symptoms that are missed by clinicians to be detected. In this Perspectives, the barriers and challenges that should be addressed when considering broad integration of PRO toxicity monitoring in oncology clinical trials are discussed, including challenges related to data collection logistics, analytical approaches, and resource utilization. Instruments conceived to enable description of treatment-related adverse effects, from the patient perspective, bring the potential to improve risk-versus-benefit analyses in clinical research, and to provide patients with accurate information, on the basis of previous experiences of their peers.
Topics: Adverse Drug Reaction Reporting Systems; Antineoplastic Agents; Drug Monitoring; Drug-Related Side Effects and Adverse Reactions; Humans; Neoplasms; Outcome Assessment, Health Care; Physician-Patient Relations; Reproducibility of Results; Surveys and Questionnaires
PubMed: 26787278
DOI: 10.1038/nrclinonc.2015.222 -
Archives of Clinical Neuropsychology :... Aug 2022In the current healthcare climate, reimbursement for services is increasingly linked to the ability to demonstrate beneficial patient outcomes. Neuropsychology faces... (Review)
Review
In the current healthcare climate, reimbursement for services is increasingly linked to the ability to demonstrate beneficial patient outcomes. Neuropsychology faces some unique challenges in outcomes research, namely, that neuropsychologists often do not follow patients over time and the effect of neuropsychological services on patient outcomes may not be fully realized until under another provider's care. Yet there is an urgent need for empirical evidence linking neuropsychological practice to positive patient outcomes. To provide a framework for this research, we define a core set of patient-centered outcomes and neuropsychological processes that apply across practice settings and patient populations. Within each area, we review the available existing literature on neuropsychological outcomes, identifying substantial gaps in the literature for future research. This work will be critical for the field to demonstrate the benefit of neuropsychological services, to continue to advocate effectively for reimbursement, and to ensure high-quality patient care.
Topics: Delivery of Health Care; Humans; Neuropsychological Tests; Neuropsychology; Outcome Assessment, Health Care; Patient-Centered Care
PubMed: 35366309
DOI: 10.1093/arclin/acac015 -
Expert Review of Pharmacoeconomics &... 2023Strong primary care has positive impact on patients' and population health, and high continuity of care is one of its hallmarks. Insight into the underlying mechanisms... (Review)
Review
INTRODUCTION
Strong primary care has positive impact on patients' and population health, and high continuity of care is one of its hallmarks. Insight into the underlying mechanisms is limited and research on this topic requires measures of primary care outputs, which are states that mediate between processes and outcomes of primary care.
AREAS COVERED
Nine potential outputs of high continuity of care were specified to examine 45 validated patient questionnaires, which were identified in a systematic review. Eighteen questionnaires covered one or more primary care outputs, yet at variable and mostly limited extent.
EXPERT OPINION
Measures of primary care outputs can strengthen clinical and health services research, but such measures have yet to be developed and validated for most primary care outputs. The use of these measures in outcome evaluations of interventions in healthcare would enhance the interpretation of intervention effects. Validated measures are also needed to tap the full potential of advanced methods of data-analysis in clinical and health services research. Better understanding of the primary care outputs may also help to mitigate broader challenges in healthcare systems.
Topics: Humans; Delivery of Health Care; Health Services Research; Outcome Assessment, Health Care; Primary Health Care; Surveys and Questionnaires
PubMed: 37306502
DOI: 10.1080/14737167.2023.2224566 -
Pain Mar 2022
Topics: Humans; Outcome Assessment, Health Care; Pain; Pain Management
PubMed: 35148287
DOI: 10.1097/j.pain.0000000000002373 -
Hormone and Metabolic Research =... May 2015Syndromes resulting in Disorders of Sex Development (DSD) are individually rare. Historically, this fact has hindered both clinical research and the delivery of... (Review)
Review
Syndromes resulting in Disorders of Sex Development (DSD) are individually rare. Historically, this fact has hindered both clinical research and the delivery of evidence-based care. Recognizing the need for advancement, members of European and North American medical societies produced policy statements, notably the Consensus Statement on Management of Intersex Disorders, which recognize that optimal healthcare in DSD requires multidisciplinary teams in conjunction with networking of treatment centers and continued development of patient registries. This paper summarizes efforts in Europe and the U.S. toward creating networks focused on expanding discovery and improving healthcare and quality of life outcomes in DSD. The objectives and function of registry-based networks (EuroDSD/I-DSD), learning collaboratives (DSD-net), clinical outcomes research (DSD-Life), and networking hybrids (DSD-TRN) are reviewed. Opportunities for, and barriers to standardization in research and care are highlighted in light of practical considerations, for example, limitations in reliably classifying anatomic phenotypes and gaps in behavioral health staffing resources. The role of patient-reported outcomes is considered, with emphasis on integrating patient perspectives, given findings of limited agreement in outcome ratings by healthcare providers and patients. Finally, the characteristics of clinical centers likely to deliver the highest quality outcomes are discussed.
Topics: Biomedical Research; Cooperative Behavior; Disorders of Sex Development; Humans; Outcome Assessment, Health Care; Practice Guidelines as Topic; Registries
PubMed: 25970713
DOI: 10.1055/s-0035-1548936