ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

Reeve, Bryce B.; Wyrwich, Kathleen W.; Wu, Albert W.; Velikova, Galina; Terwee, Caroline B.; Snyder, Claire; Schwartz, Carolyn E.; Revicki, Dennis A.; Moinpour, Carol M.; McLeod, Lori; Lyons, Jessica C.; Lenderking, William R.; Hinds, Pamela S.; Hays, Ron D.; Greenhalgh, Joanne; Gershon, Richard; Feeny, David; Fayers, Peter; Cella, David; Brundage, Michael; Ahmed, Sara; Aaronson, Neil K.; Butt, Zeeshan

doi:10.1007/s11136-012-0344-y

Cited by 642 publications

(614 citation statements)

References 48 publications

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“…Its strengths include a large, geographically diverse sample size with demographic and treatment characteristics similar to the broader United States HD population and the use of a survey instrument developed with patient input and attention to patient-reported outcome standards (24).…”

Section: Discussionmentioning

confidence: 99%

Patient-Stated Preferences Regarding Volume-Related Risk Mitigation Strategies for Hemodialysis

Flythe

Mangione

Brunelli

et al. 2014

Clinical Journal of the American Society of Nephrology

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Background and objectives Larger weight gain and higher ultrafiltration rates have been associated with poorer outcomes among patients on dialysis. Dietary restrictions reduce fluid-related risk; however, adherence is challenging. Alternative fluid mitigation strategies include treatment time extension, more frequent dialysis, adjunct peritoneal dialysis, and wearable ultrafiltration devices. No data regarding patient preferences for fluid management exist. A survey was designed, tested, and administered to assess patient-stated preferences regarding fluid mitigation.Design, setting, participants, & measurements A written survey concerning fluid-related symptoms, patient and treatment characteristics, and fluid management preferences was developed. The cross-sectional survey was completed by 600 patients on hemodialysis at 18 geographically diverse ambulatory facilities. Comparisons of patient willingness to engage in volume mitigation strategies across fluid symptom burden, dietary restriction experience, and patient characteristics were performed.Results Final analyses included 588 surveys. Overall, if allowed to liberalize fluid intake, 44.6% of patients were willing to extend treatment time by 15 minutes. Willingness to extend treatment time was incrementally less for longer treatment extensions; 12.2% of patients were willing to add a fourth weekly treatment session, and 13.5% of patients were willing to participate in nocturnal dialysis three nights per week. Patients more bothered by their fluid restrictions (versus less bothered) were more willing to engage in fluid mitigation strategies. Demographic characteristics and symptoms, such as cramping and dyspnea, were not consistently associated with willingness to engage in the proposed strategies. More than 25% of patients were unsure of their dry weights and typical interdialytic weight gains.Conclusions Patients were generally averse to treatment time extension.15 minutes. Patients more bothered (versus less bothered) by their prescribed fluid restrictions were more willing to engage in volume mitigation strategies. Additional study of patient-stated preferences in hemodialysis treatment practices is needed to guide patient care and identify deficiencies in patient treatment and disease-related knowledge.

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Section: Discussionmentioning

confidence: 99%

Patient-Stated Preferences Regarding Volume-Related Risk Mitigation Strategies for Hemodialysis

Flythe

Mangione

Brunelli

et al. 2014

Clinical Journal of the American Society of Nephrology

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“…Alongside the development of measures came work to establish appropriate methods, criteria and minimum standards for the psychometric properties for use in research settings. [257][258][259][260] One example of these criteria, developed by ISOQOL, is reproduced in Table 3. Content validity A PRO measure should have evidence supporting its content validity, including evidence that patients and experts consider the content of the PRO measure relevant and comprehensive for the concept, population, and aim of the measurement application.…”

Section: Review Methodsology: Individual Proms Measuresmentioning

confidence: 99%

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Greenhalgh

Dalkin

Gooding

et al. 2017

Health Serv Deliv Res

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168

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BackgroundThe feedback of patient-reported outcome measures (PROMs) data is intended to support the care of individual patients and to act as a quality improvement (QI) strategy.ObjectivesTo (1) identify the ideas and assumptions underlying how individual and aggregated PROMs data are intended to improve patient care, and (2) review the evidence to examine the circumstances in which and processes through which PROMs feedback improves patient care.DesignTwo separate but related realist syntheses: (1) feedback of aggregate PROMs and performance data to improve patient care, and (2) feedback of individual PROMs data to improve patient care.InterventionsAggregate – feedback and public reporting of PROMs, patient experience data and performance data to hospital providers and primary care organisations. Individual – feedback of PROMs in oncology, palliative care and the care of people with mental health problems in primary and secondary care settings.Main outcome measuresAggregate – providers’ responses, attitudes and experiences of using PROMs and performance data to improve patient care. Individual – providers’ and patients’ experiences of using PROMs data to raise issues with clinicians, change clinicians’ communication practices, change patient management and improve patient well-being.Data sourcesSearches of electronic databases and forwards and backwards citation tracking.Review methodsRealist synthesis to identify, test and refine programme theories about when, how and why PROMs feedback leads to improvements in patient care.ResultsProviders were more likely to take steps to improve patient care in response to the feedback and public reporting of aggregate PROMs and performance data if they perceived that these data were credible, were aimed at improving patient care, and were timely and provided a clear indication of the source of the problem. However, implementing substantial and sustainable improvement to patient care required system-wide approaches. In the care of individual patients, PROMs function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices with patients. Patients valued both standardised and individualised PROMs as a tool to raise issues, but thought is required as to which patients may benefit and which may not. In settings such as palliative care and psychotherapy, clinicians viewed individualised PROMs as useful to build rapport and support the therapeutic process. PROMs feedback did not substantially shift clinicians’ communication practices or focus discussion on psychosocial issues; this required a shift in clinicians’ perceptions of their remit.Strengths and limitationsThere was a paucity of research examining the feedback of aggregate PROMs data to providers, and we drew on evidence from interventions with similar programme theories (other forms of performance data) to test our theories.ConclusionsPROMs data act as ‘tin openers’ rather than ‘dials’. Providers need more support and guidance on how to collect their own internal data, how to rule out alternative explanations for their outlier status and how to explore the possible causes of their outlier status. There is also tension between PROMs as a QI strategy versus their use in the care of individual patients; PROMs that clinicians find useful in assessing patients, such as individualised measures, are not useful as indicators of service quality.Future workFuture research should (1) explore how differently performing providers have responded to aggregate PROMs feedback, and how organisations have collected PROMs data both for individual patient care and to improve service quality; and (2) explore whether or not and how incorporating PROMs into patients’ electronic records allows multiple different clinicians to receive PROMs feedback, discuss it with patients and act on the data to improve patient care.Study registrationThis study is registered as PROSPERO CRD42013005938.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Os resultados encontrados demonstraram que esse instrumento é confiável e válido para aplicação no Brasil, e atende aos critérios de qualidade propostos para medidas de resultados relatados pelo paciente 48,49 .…”

Section: Discussionunclassified

Adaptação transcultural e validação da escala de Saúde Global do PROMIS para a língua portuguesa

et al. 2017

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Este é um artigo publicado em acesso aberto (Open Access) sob a licença Creative Commons Attribution, que permite uso, distribuição e reprodução em qualquer meio, sem restrições, desde que o trabalho original seja corretamente citado. Adaptação transcultural e validação da escala de Saúde Global do PROMIS para a língua portuguesaCross-cultural adaptation and validation of the PROMIS Global Health scale in the Portuguese language Adaptación transcultural y validación de la escala de Salud Global del PROMIS a la lengua portuguesa

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ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

Cited by 642 publications

References 48 publications

Patient-Stated Preferences Regarding Volume-Related Risk Mitigation Strategies for Hemodialysis

Patient-Stated Preferences Regarding Volume-Related Risk Mitigation Strategies for Hemodialysis

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Adaptação transcultural e validação da escala de Saúde Global do PROMIS para a língua portuguesa

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