MyMedR

Displaying all 5 publications

Abstract:

Sort:

Fulltext Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration

Rodrigues IA, Sprinkhuizen SM, Barthelmes D, Blumenkranz M, Cheung G, Haller J, et al.

Am J Ophthalmol, 2016 08;168:1-12.
PMID: 27131774 DOI: 10.1016/j.ajo.2016.04.012

PURPOSE: To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care.
DESIGN: Recommendations from a working group of international experts in macular degeneration outcomes registry development and patient advocates, facilitated by the International Consortium for Health Outcomes Measurement (ICHOM).
METHODS: Modified Delphi technique, supported by structured teleconferences, followed by online surveys to drive consensus decisions. Potential outcomes were identified through literature review of outcomes collected in existing registries and reported in major clinical trials. Outcomes were refined by the working group and selected based on impact on patients, relationship to good clinical care, and feasibility of measurement in routine clinical practice.
RESULTS: Standardized measurement of the following outcomes is recommended: visual functioning and quality of life (distance visual acuity, mobility and independence, emotional well-being, reading and accessing information); number of treatments; complications of treatment; and disease control. Proposed data collection sources include administrative data, clinical data during routine clinical visits, and patient-reported sources annually. Recording the following clinical characteristics is recommended to enable risk adjustment: age; sex; ethnicity; smoking status; baseline visual acuity in both eyes; type of macular degeneration; presence of geographic atrophy, subretinal fibrosis, or pigment epithelial detachment; previous macular degeneration treatment; ocular comorbidities.
CONCLUSIONS: The recommended minimum outcomes and pragmatic reporting standards should enable standardized, meaningful assessments and comparisons of macular degeneration treatment outcomes. Adoption could accelerate global improvements in standardized data gathering and reporting of patient-centered outcomes. This can facilitate informed decisions by patients and health care providers, plus allow long-term monitoring of aggregate data, ultimately improving understanding of disease progression and treatment responses.

Matched MeSH terms: Patient-Centered Care/standards*
Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel

Bhidayasiri R, Panyakaew P, Trenkwalder C, Jeon B, Hattori N, Jagota P, et al.

Parkinsonism Relat Disord, 2020 03;72:82-87.
PMID: 32146380 DOI: 10.1016/j.parkreldis.2020.02.013

An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.

Matched MeSH terms: Patient-Centered Care/standards*
Fulltext Information technology for patient safety

Huckvale C, Car J, Akiyama M, Jaafar S, Khoja T, Bin Khalid A, et al.

Qual Saf Health Care, 2010 Aug;19 Suppl 2:i25-33.
PMID: 20693213 DOI: 10.1136/qshc.2009.038497

BACKGROUND: Research on patient care has identified substantial variations in the quality and safety of healthcare and the considerable risks of iatrogenic harm as significant issues. These failings contribute to the high rates of potentially avoidable morbidity and mortality and to the rising levels of healthcare expenditure seen in many health systems. There have been substantial developments in information technology in recent decades and there is now real potential to apply these technological developments to improve the provision of healthcare universally. Of particular international interest is the use of eHealth applications. There is, however, a large gap between the theoretical and empirically demonstrated benefits of eHealth applications. While these applications typically have the technical capability to help professionals in the delivery of healthcare, inadequate attention to the socio-technical dimensions of their use can result in new avoidable risks to patients.
RESULTS AND DISCUSSION: Given the current lack of evidence on quality and safety improvements and on the cost-benefits associated with the introduction of eHealth applications, there should be a focus on implementing more mature technologies; it is also important that eHealth applications should be evaluated against a comprehensive and rigorous set of measures, ideally at all stages of their application life cycle.

Matched MeSH terms: Patient-Centered Care/standards
Designing and evaluating a patient-centred health management system for seniors

Dhillon JS, Wünsche B, Lutteroth C

J Telemed Telecare, 2016 Mar;22(2):96-104.
PMID: 26026175 DOI: 10.1177/1357633X15586082

INTRODUCTION: Telehealth has been widely promoted as a technology to make healthcare more effective and affordable. However, current telehealth systems suffer from vendor lock-in and high cost, and are designed for managing chronic diseases rather than preventing them.
METHODS: We address shortcomings of existing consumer-level health informatics applications in supporting senior health consumers, and provide designers of such systems with a design framework. We assess the feasibility of patient-centred health management systems (HMSs) that are designed based on the proposed framework. In contrast to traditional telehealth, HMSs are patient centred and aim at enabling health consumers to take control of their own health by providing functionality for health self-management. Quantitative and qualitative methods were adopted in evaluating a prototype HMS.
RESULTS: Senior healthcare consumers viewed our HMS prototype positively, and experienced a positive change in their attitude towards their health. We identified requirements and challenges for HMSs. In particular, participants indicated that social networking features must have a clear purpose beyond simple broadcasting of emotions and opinions.
DISCUSSION: Our study indicates that seniors are able and motivated to leverage a web-based patient-centred HMS, provided that there are suitable health support applications tailored to their needs. This could be achieved by making it attractive for third party application developers to contribute HMS content.
KEYWORDS: Telehealth; Web 2.0 technologies; gerontechnology; health management system; patient empowerment; social networking

Matched MeSH terms: Patient-Centered Care/standards
Improving Hypertension Outcome Measurement in Low- and Middle-Income Countries

Zack R, Okunade O, Olson E, Salt M, Amodeo C, Anchala R, et al.

Hypertension, 2019 05;73(5):990-997.
PMID: 30929516 DOI: 10.1161/HYPERTENSIONAHA.118.11916

High blood pressure is the leading modifiable risk factor for mortality, accounting for nearly 1 in 5 deaths worldwide and 1 in 11 in low-income countries. Hypertension control remains a challenge, especially in low-resource settings. One approach to improvement is the prioritization of patient-centered care. However, consensus on the outcomes that matter most to patients is lacking. We aimed to define a standard set of patient-centered outcomes for evaluating hypertension management in low- and middle-income countries. The International Consortium for Health Outcomes Measurement convened a Working Group of 18 experts and patients representing 15 countries. We used a modified Delphi process to reach consensus on a set of outcomes, case-mix variables, and a timeline to guide data collection. Literature reviews, patient interviews, a patient validation survey, and an open review by hypertension experts informed the set. The set contains 18 clinical and patient-reported outcomes that reflect patient priorities and evidence-based hypertension management and case-mix variables to allow comparisons between providers. The domains included are hypertension control, cardiovascular complications, health-related quality of life, financial burden of care, medication burden, satisfaction with care, health literacy, and health behaviors. We present a core list of outcomes for evaluating hypertension care. They account for the unique challenges healthcare providers and patients face in low- and middle-income countries, yet are relevant to all settings. We believe that it is a vital step toward international benchmarking in hypertension care and, ultimately, value-based hypertension management.

Matched MeSH terms: Patient-Centered Care/standards*