78 research outputs found

    Health data processes. A framework for analysing and discussing efficient use and reuse of health data with focus on Patient Reported Outcome (PRO) measures

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    This is is the final version. Available from Journal of Medical Internet Research via the DOI in this record.The collection and use of patient health data is central to any kind of activity in the healthcare system. This data may be produced during routine clinical processes or obtained directly from the patient using patient-reported outcome (PRO) measures. Although efficiency and other reasons justify data availability for a range of potential relevant uses, these data are nearly always collected for a single specific purpose. The healthcare data literature reflects this narrow scope, and there is limited literature on the joint use of health data for daily clinical use, clinical research, surveillance and administrative purposes. The aim of this paper is to provide a framework for a discussion of the efficient use of health data with specific focus on the role of PRO measures. PRO data may be used: i) at an individual patient level to inform patient care or shared-decision making and tailor care to individual needs or ii) at group level as a complement to health record data e.g. on mortality and readmission to inform service delivery and measure real-world effectiveness of treatment. PRO may be used either for their own sake, to provide valuable information from the patient perspective, or as proxy for clinical data that would be otherwise not feasible to collect. We introduce a framework to analyse any health care activity that involves health data. The framework consists of four data processes (patient identification, data collection, data aggregation and data use), further structured into two dichotomous dimensions in each data process (level: group vs patient; and timeframe: ad hoc vs systematic). This framework is used to analyse various health activities with respect to joint use of data considering the technical, legal, organisational and logistical challenges that characterize each data process. Finally, we propose a model for joint use of health data with data collected during follow-up as basis. Demands for health data will continue to increase which will further add to the need for the concerted use and reuse of PRO data for parallel purposes. Repeated and uncoordinated PRO data collection for the same patient for different purposes results in misuse of resources for the healthcare system as well as reduced response rates owing to questionnaire fatigue. PRO data can be routinely collected both at the hospital (in- as well as outpatients) and outside of hospital settings, in primary or social care settings, or in the patient’s home provided the health informatics infrastructure is in place. In the future, clinical settings are likely to be a prominent source of PRO data; however we are also likely to see increased remote collection of PRO data by patients in their own home (telePRO). Data collection for research and quality surveillance will have to adapt to this circumstance and adopt complementary data capture methods which take advantage of the utility of PRO data collected during daily clinical practice. The European Union’s regulation with respect to the protection of personal data, General Data Protection Regulation, imposes severe restrictions on use of health data for parallel purposes and steps should be taken to alleviate the consequences while still protecting personal data against misuse.National Institute for Health Research (NIHR

    Association of anorexia nervosa with risk of cancer. A systematic review and meta-analysis

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    This is the final version. Available from the publisher via the DOI in this record.IMPORTANCE Anorexia nervosa is recognized as an important cause of morbidity in young people. However, the risk of cancer in people with anorexia nervosa remains uncertain. OBJECTIVE To evaluate the association of anorexia nervosa with the risk of developing or dying of cancer. DATA SOURCES MEDLINE, Scopus, Embase, and Web of Science from database inception to January 9, 2019. STUDY SELECTION Published observational studies in humans examining the risk of cancer in people with anorexia nervosa compared with the general population or those without anorexia nervosa. Studies needed to report incidence or mortality rate ratios (RRs). DATA EXTRACTION AND SYNTHESIS Screening, data extraction, and methodological quality assessment were performed by at least 2 researchers independently. A random-effects model was used to synthesize individual studies. Heterogeneity (I 2 ) was assessed and 95% prediction intervals (PIs) were calculated. MAIN OUTCOMES AND MEASURES All cancer incidence and cancer mortality associated with anorexia nervosa. Secondary outcomes were site-specific cancer incidence and mortality. RESULTS Seven cohort studies published in 10 articles (42 602 participants with anorexia nervosa) were included. Anorexia nervosa was not associated with risk of developing any cancer (4 studies in women; RR, 0.97; 95% CI, 0.89-1.06; P = .53; I 2 , 0%; 95% PI, 0.80-1.18; moderate confidence). Anorexia nervosa was associated with decreased breast cancer incidence (5 studies in women; RR, 0.60; 95% CI, 0.50-0.80; P < .001; I 2 , 0%; 95% PI, 0.44-0.83; high confidence). Conversely, anorexia nervosa was associated with increased risk of developing lung cancer (3 studies in women; RR, 1.50; 95% CI, 1.06-2.12; P = .001; I 2 , 0%; 95% PI, 0.19-16.46; low confidence) and esophageal cancer (2 studies in women; RR, 6.10; 95% CI, 2.30-16.18; P < .001; I 2 , 0%; low confidence). CONCLUSIONS AND RELEVANCE Among people with anorexia nervosa, risk of developing cancer did not differ compared with the general population, but a significantly reduced risk of breast cancer was observed. Understanding the mechanisms underlying these associations could have important preventive potentialGeneralitat ValencianaCarlos III Health Institut

    Influence of hospital volume of procedures by year on the risk of revision of total hip and knee arthroplasties: a propensity score-matched cohort study

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    The volume of total hip (THA) and knee arthroplasties (TKA) performed in a hospital per year could be an influential factor on the revision of these procedures. The aims of this study were: To obtain comparable cohorts in higher- and lower-volume hospitals; and to assess the association between the hospital volume and the incidence of revision. Data from patients undergoing THA and TKA caused by osteoarthritis and recorded in the Catalan Arthroplasty Register (RACat) between January 2005 and December 2016 were used. The main explanatory variable was hospital volume by year (higher/lower). The cut-off point was fixed, based on previous research, at 50 THA and 125 TKA procedures/year. To obtain comparable populations, a propensity-score matching method (1:1) was used. Patient characteristics prior to and after matching were compared. To assess differences by volume, subhazard ratios (SHRs) from competing risks models were obtained. After matching, 13,772 THA and 36,316 TKA patients remained in the study. Prior to matching, in both joints, significant differences in all confounders were observed between volume groups. After matching, none of them remained significant. Both in THA and TKA, a higher risk of revision in higher-volume hospitals was observed (THA SHR: 1.25, 95%CI: 1.02-1.53; and TKA SHR: 1.29, 95%CI: 1.16-1.44). Unlike other contexts, currently in Catalonia, higher-volume hospitals have a greater risk of revision than lower-volume hospitals. Further research could be valuable to define context-dependent measures to reduce the incidence of revision.This article is freely available via Open Access. Click on the Publisher URL to access it from the publisher's site

    Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research

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    A33-Effects of Out-of-Pocket (OOP) Payments and Financial Distress on Quality of Life (QoL) of People with Parkinson’s (PwP) and their Carer

    Antioxidant and oxidative stress: a mutual interplay in age-related diseases

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    Aging is the progressive loss of organ and tissue function over time. Growing older is positively linked to cognitive and biological degeneration such as physical frailty, psychological impairment, and cognitive decline. Oxidative stress is considered as an imbalance between pro- and antioxidant species, which results in molecular and cellular damage. Oxidative stress plays a crucial role in the development of age-related diseases. Emerging research evidence has suggested that antioxidant can control the autoxidation by interrupting the propagation of free radicals or by inhibiting the formation of free radicals and subsequently reduce oxidative stress, improve immune function, and increase healthy longevity. Indeed, oxidation damage is highly dependent on the inherited or acquired defects in enzymes involved in the redox-mediated signaling pathways. Therefore, the role of molecules with antioxidant activity that promote healthy aging and counteract oxidative stress is worth to discuss further. Of particular interest in this article, we highlighted the molecular mechanisms of antioxidants involved in the prevention of age-related diseases. Taken together, a better understanding of the role of antioxidants involved in redox modulation of inflammation would provide a useful approach for potential interventions, and subsequently promoting healthy longevity
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