Dataset Information

Theoretical framework and methodological development of common subjective health outcome measures in osteoarthritis: a critical review.

ABSTRACT: Subjective measures involving clinician ratings or patient self-assessments have become recognised as an important tool for the assessment of health outcome. The value of a health outcome measure is usually assessed by a psychometric evaluation of its reliability, validity and responsiveness. However, psychometric testing involves an accumulation of evidence and has recognised limitations. It has been suggested that an evaluation of how well a measure has been developed would be a useful additional criteria in assessing the value of a measure. This paper explored the theoretical background and methodological development of subjective health status measures commonly used in osteoarthritis research. Fourteen subjective health outcome measures commonly used in osteoarthritis research were examined. Each measure was explored on the basis of their i) theoretical framework (was there a definition of what was being assessed and was it part of a theoretical model?) and ii) methodological development (what was the scaling strategy, how were the items generated and reduced, what was the response format and what was the scoring method?). Only the AIMS, SF-36 and WHOQOL defined what they were assessing (i.e. the construct of interest) and no measure assessed was part of a theoretical model. None of the clinician report measures appeared to have implemented a scaling procedure or described the rationale for the items selected or scoring system. Of the patient self-report measures, the AIMS, MPQ, OXFORD, SF-36, WHOQOL and WOMAC appeared to follow a standard psychometric scaling method. The DRP and EuroQol used alternative scaling methods. The review highlighted the general lack of theoretical framework for both clinician report and patient self-report measures. This review also drew attention to the wide variation in the methodological development of commonly used measures in OA. While, in general the patient self-report measures had good methodological development, the clinician report measures appeared less well developed. It would be of value if new measures defined the construct of interest and, that the construct, be part of theoretical model. By ensuring measures are both theoretically and empirically valid then improvements in subjective health outcome measures should be possible.

SUBMITTER: Pollard B

PROVIDER: S-EPMC1832179 | biostudies-literature | 2007 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Theoretical framework and methodological development of common subjective health outcome measures in osteoarthritis: a critical review.

Pollard Beth B Johnston Marie M Dixon Diane D

Health and quality of life outcomes 20070307

Subjective measures involving clinician ratings or patient self-assessments have become recognised as an important tool for the assessment of health outcome. The value of a health outcome measure is usually assessed by a psychometric evaluation of its reliability, validity and responsiveness. However, psychometric testing involves an accumulation of evidence and has recognised limitations. It has been suggested that an evaluation of how well a measure has been developed would be a useful additio ...[more]

PMID: 17343739

Similar Datasets

Project description:BACKGROUND:With an increasing awareness of people's satisfaction and feeling, health-related quality of life (HRQoL) has become an essential aspect of measuring health. HRQoL is fundamentally a foreign concept introduced to China from the West. While a growing number of studies applied western HRQoL measures, few content validity tests examined the legitimacy of applying Western developed HRQoL measures in a Chinese cultural setting. If there are distinct differences in health conceptualisation between China and the West, it can be argued that those western measures may fail to ask the most appropriate and important questions among a Chinese population in assessing health. As a limited number of studies have investigated Chinese people's understandings of health, this study aimed to explore how health is defined and described in China. METHODS:A Q-methodological study was conducted to explore subjective constructions of health among Chinese participants. A scoping review of Chinese generic HRQoL measures, supplemented by a series of qualitative interviews conducted in China, produced a list of 42 statements representing aspects of health considered as being important in a Chinese cultural setting. Chinese participants in face-to-face interviews ranked and sorted these statements. Data were analysed to identify clusters of participants who shared a similar perspective, using a by-person factor analysis procedure. RESULTS:110 Chinese participants with various demographics characteristics completed sorting interviews. Five independent factors emerged: (I) "Physical independence and social interaction skills"; (II) "Physical health"; (III) "Sensations and feelings"; (IV) "Lifestyles"; (V) "Learning and working abilities". CONCLUSIONS:The Q-study showed that many health statements were rated highly as most important by a diverse range of Chinese participants but were not covered in the commonly used Western HRQoL measure EQ-5D. It then suggests that the EQ-5D descriptive system might need modification to improve its capacity to measure health status in China. The study thus raises a general question as to how appropriate the Western-developed HRQoL measures are when used to assess health in a significantly different cultural setting.

Project description:Background Subjective cognitive decline (SCD) is present in the early stage of preclinical Alzheimer’s disease (AD) and is associated with an increased risk of further cognitive decline and AD dementia later in life. Early detection of at-risk groups with subjective complaints is critical for targeted dementia prevention at the earliest. Accurate assessment of SCD is crucial. However, current measures lack important psychometric evaluations and or reporting. Objectives To systematically evaluate measurement properties of self-reported outcome measures (PROMs) used to assess SCD in the older adult population with or at risk of AD. Methods and analysis We used the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols 2015 Checklist for reporting. We conducted a literature search, screened, and included validation studies of SCD based on self-reported questionnaires from both population-based and clinical studies, conducted in older adults (≥ 55). We critically appraised the included primary studies using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. Results Sixteen studies met the inclusion criteria. The included studies reported psychometric properties of 17 SCD self-reported questionnaires. We extracted data on the structural validity, internal consistency, test-retest reliability, and cross-cultural validity and found a widespread proneness to bias across studies, and a marked heterogeneity is assessed and reported measurement properties that prevented the consolidation of results. Conclusion Our findings suggest that available SCD questionnaires lack content validity evaluation. Currently available measurements of SCD lack development and validation standards. Further work is needed to develop and validate SCD self-reported measurement with good quality measurement properties. Supplementary Information The online version contains supplementary material available at 10.1186/s13643-022-02018-y.

Project description:Study questionWhich outcome measures are reported in RCTs for IVF?Summary answerMany combinations of numerator and denominator are in use, and are often employed in a manner that compromises the validity of the study.What is known alreadyThe choice of numerator and denominator governs the meaning, relevance and statistical integrity of a study's results. RCTs only provide reliable evidence when outcomes are assessed in the cohort of randomised participants, rather than in the subgroup of patients who completed treatment.Study design, size, durationReview of outcome measures reported in 142 IVF RCTs published in 2013 or 2014.Participants/materials, setting, methodsTrials were identified by searching the Cochrane Gynaecology and Fertility Specialised Register. English-language publications of RCTs reporting clinical or preclinical outcomes in peer-reviewed journals in the period 1 January 2013 to 31 December 2014 were eligible. Reported numerators and denominators were extracted. Where they were reported, we checked to see if live birth rates were calculated correctly using the entire randomised cohort or a later denominator.Main results and the role of chanceOver 800 combinations of numerator and denominator were identified (613 in no more than one study). No single outcome measure appeared in the majority of trials. Only 22 (43%) studies reporting live birth presented a calculation including all randomised participants or only excluding protocol violators. A variety of definitions were used for key clinical numerators: for example, a consensus regarding what should constitute an ongoing pregnancy does not appear to exist at present.Limitations, reasons for cautionSeveral of the included articles may have been secondary publications. Our categorisation scheme was essentially arbitrary, so the frequencies we present should be interpreted with this in mind. The analysis of live birth denominators was post hoc.Wider implications of the findingsThere is massive diversity in numerator and denominator selection in IVF trials due to its multistage nature, and this causes methodological frailty in the evidence base. The twin spectres of outcome reporting bias and analysis of non-randomised comparisons do not appear to be widely recognised. Initiatives to standardise outcome reporting, such as requiring all effectiveness studies to report live birth or cumulative live birth, are welcome. However, there is a need to recognise that early outcomes of treatment, such as stimulation response or embryo quality, may be appropriate choices of primary outcome for early phase studies.Study funding/competing interestsJ.W. is funded by a Doctoral Research Fellowship from the National Institute for Health Research. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. J.W. also declares that publishing research is beneficial to his career. J.W. and A.V. are statistical editors, and M.S. is Information Specialist, for the Cochrane Gynaecology and Fertility Group, although the views expressed here are not necessarily those of the group. D.R.B. is funded by the NHS as Scientific Director of a clinical IVF service. The authors declare no other conflicts of interest.

Project description:The collection and use of patient health data are central to any kind of activity in the health care system. These 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 potentially relevant uses, these data are nearly always collected for a single specific purpose. The health care 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 discussing the efficient use of health data with a specific focus on the role of PRO measures. PRO data may be used at an individual patient level to inform patient care or shared decision making and to tailor care to individual needs or group-level needs as a complement to health record data, such as that on mortality and readmission, in order to inform service delivery and measure the real-world effectiveness of treatment. PRO measures may be used either for their own sake, to provide valuable information from the patient perspective, or as a proxy for clinical data that would otherwise not be feasible to collect. We introduce a framework to analyze 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; timeframe: ad hoc vs systematic). This framework is used to analyze various health activities with respect to joint use of data, considering the technical, legal, organizational, 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 a base. 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 patient and the health care system as well as reduced response rates owing to questionnaire fatigue. PRO data can be routinely collected both at the hospital (from inpatients 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 that 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 the use of health data for parallel purposes, and steps should be taken to alleviate the consequences while still protecting personal data against misuse.

Project description:One of the major debates in implementation research turns around fidelity and adaptation. Fidelity is the degree to which an intervention is implemented as intended by its developers. It is meant to ensure that the intervention maintains its intended effects. Adaptation is the process of implementers or users bringing changes to the original design of an intervention. Depending on the nature of the modifications brought, adaptation could either be potentially positive or could carry the risk of threatening the theoretical basis of the intervention, resulting in a negative effect on expected outcomes. Adaptive interventions are those for which adaptation is allowed or even encouraged. Classical fidelity dimensions and conceptual frameworks do not address the issue of how to adapt an intervention while still maintaining its effectiveness.We support the idea that fidelity and adaptation co-exist and that adaptations can impact either positively or negatively on the intervention's effectiveness. For adaptive interventions, research should answer the question how an adequate fidelity-adaptation balance can be reached. One way to address this issue is by looking systematically at the aspects of an intervention that are being adapted. We conducted fidelity research on the implementation of an empowerment strategy for dengue prevention in Cuba. In view of the adaptive nature of the strategy, we anticipated that the classical fidelity dimensions would be of limited use for assessing adaptations. The typology we used in the assessment-implemented, not-implemented, modified, or added components of the strategy-also had limitations. It did not allow us to answer the question which of the modifications introduced in the strategy contributed to or distracted from outcomes. We confronted our empirical research with existing literature on fidelity, and as a result, considered that the framework for implementation fidelity proposed by Carroll et al. in 2007 could potentially meet our concerns. We propose modifications to the framework to assess both fidelity and adaptation. The modified Carroll et al.'s framework we propose may permit a comprehensive assessment of the implementation fidelity-adaptation balance required when implementing adaptive interventions, but more empirical research is needed to validate it.

Dataset Information

Theoretical framework and methodological development of common subjective health outcome measures in osteoarthritis: a critical review.

Publications

Theoretical framework and methodological development of common subjective health outcome measures in osteoarthritis: a critical review.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets