Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

Haywood, Kirstie L.; Wilson, Roger; Staniszewska, Sophie; Salek, Sam

doi:10.1007/s40271-016-0197-5

Cited by 19 publications

(17 citation statements)

References 30 publications

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“…Whilst this review identified that patients’ needs should be considered when implementing PROMs, there was little in the reviews about involving patients with designing the PROMs process. This contrasts with other literature that emphasises the need to involve patients in designing PROMs [ 46 ], and arguably the whole implementation process.…”

Section: Discussionmentioning

confidence: 65%

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

Foster

Croot

Brazier

et al. 2018

J Patient Rep Outcomes

246

294

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BackgroundThere is increasing interest in using Patient Reported Outcome Measures (PROMs) within organisations delivering health related services. However, organisations have had mixed success in implementing PROMs and there is little understanding about why this may be. Thus, the purpose of this study was to identify the facilitators and barriers to implementing PROMs in organisations.MethodA systematic review of reviews was undertaken. Searches were conducted of five electronic databases: MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane Database of Systematic Reviews, during the week of the 20th February 2017. Additional search methods included website searching and reference checking. To be included, a publication had to be a review of the literature, describe its methods and include information related to implementing PROMs. The reviews were extracted using a standardised form and assessed for their risk of bias using the Risk of Bias in Systematic Reviews tool. The findings were synthesised using the Consolidated Framework for Implementation Research. The protocol was registered on the International Prospective Register of Systematic Reviews database (PROSPERO) (CRD42017057491).ResultsInitially 2047 records were identified. After assessing eligibility, six reviews were included. These reviews varied in their review type and focus. Different issues arose at distinct stages of the implementation process. Organisations needed to invest time and resources in two key stages early in the implementation process: ‘designing’ the processes for using PROMs within an organisation; and ‘preparing’ an organisation and its staff. The ‘designing’ stage involved organisations planning not just which PROMs to use and how to administer them, but also how the data would be used for clinical purposes. The ‘preparing’ stage involved getting an organisation and its staff ready to use PROMs, particularly persuading clinicians of the validity and value of PROMs, delivering training, and developing electronic systems. Having an implementation lead overseeing the process and developing the process based on feedback were also identified as facilitating implementation.ConclusionOrganisations implementing PROMs need to invest time and resources in ‘designing’ the PROMs strategy and ‘preparing’ the organisation to use PROMs. Focusing on these earlier stages may prevent problems arising when PROMs are used in practice.Electronic supplementary materialThe online version of this article (10.1186/s41687-018-0072-3) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 65%

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

Foster

Croot

Brazier

et al. 2018

J Patient Rep Outcomes

246

294

View full text Add to dashboard Cite

show abstract

“…Clinicians or researchers wishing to use PROMs in PSC patients may consider use of both generic and disease specific measures. Choice of measurement selection should be informed through consideration on psychometric properties and patient input [ 53 ]. Generic measures such as the SF-36, although not formally validated in PSC patients, are widely used and allow comparison of the burden of PSC with other chronic disease, whilst the EQ-5D and SF-6D may be used to provide estimates of health utility to inform cost-effectiveness analysis [ 54 ].…”

Section: Discussionmentioning

confidence: 99%

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

Isa

Turner

Kaur

et al. 2018

Health Qual Life Outcomes

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BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients’ to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC.MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist.ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study.ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-0951-6) contains supplementary material, which is available to authorized users.

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“…The idea that you can have Patient Reported Outcomes without patient provided inputs to inform the methods and processes used, is irrational and probably unethical. As involved patients we need to move actively beyond patient involvement to becoming patients with a clear purpose and influence in the design process [26]. We, by that I mean established patient advocates/representatives, must use our influence to ensure that recent patients, the ones whose experience is fresh and hurting, actually define content and make decisions.…”

Section: The Role Of Prosmentioning

confidence: 99%

Patient led PROMs must take centre stage in cancer research

Wilson

2018

Res Involv Engagem

Self Cite

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Patient involvement in research is about adding value rather than commenting on technical quality. After 15 years as an involved patient in cancer research I started looking around and I found I was asking myself, where is the next leap in real patient benefit going to come from? Science is making a difference to a few patients with metastatic disease but it has been achieved at a high cost. I looked at the evidence from current practices in cancer care and saw that many patients are still dying within days of taking their last chemotherapy. The ethics of current drug adoption practices and the use of new drugs are being questioned socially and politically. Evidence based practice is asking researchers to find the true value of new treatments. I came to the conclusion that quality of life assessment and patient reported outcome measures (PROMs) which capture subjective patient experience are where real and lasting progress can be made. Quality of life in research is about structured assessment. PROMs are built around the patient experience. Patient involvement is essential. The idea that you can have Patient Reported Outcomes without patient provided inputs to inform the methods and processes used, is irrational and probably unethical. In research there is a lot of scattered activity but no coherent vision for all this work. I propose a vision based on defining patient pathways informed by PROMs. Pathways would underpin a life quality description which patients can easily identify and which doctors would find easy to communicate. Pathways would also offer value to regulators and commissioners by focusing on how clinical activity delivers patient benefit.

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Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

Cited by 19 publications

References 30 publications

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

Patient led PROMs must take centre stage in cancer research

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