Saving time and effort: Best practice for adapting existing patient-reported outcome measures in hepatology

Table 3 Some examples of online resources that can be used to identify candidate patient reported outcome measures for adaptation

Resource name and web address	Resource Information
ePROVIDETM (https://eprovide.mapi-trust.org/)	This is an online service provided by Mapi Research Trust and is the official licensor and distributor of more than 450 clinical outcome assessments (or PROMs). This resource allows you to search for PROMs within a specific clinical area and presents: a summary of each tool; the authors of the tool; different version of the questionnaire; the copyright owner; the specific condition/disease in which the PROM has been used; the original language the PROM was developed in; references to the original PROM development publications; and a list of any validated translations of the original questionnaire. If a PROM is deemed appropriate but no valid translation exists, there is also an opportunity to submit a request to undertake a linguistic validation of the questionnaire
COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) (https://database.cosmin.nl/)	The COSMIN initiative (https://www.cosmin.nl/) aims to “develop methodology and practical tools for selecting the most suitable outcome measurement instrument). Their mission statement is: “to improve the selection of outcome measurement instruments of health outcomes by developing and encouraging the use of transparent methodology and practical tools for selecting the most suitable outcome measurement instrument in research and clinical practice”. The COSMIN website provides a link to the COSMIN Database for Systematic Reviews which can be searched to identify literature reviews that have been undertaken within specific clinical areas. The database provides a summary of the review and the PROMs that formed part of the review and links to the original publications. Examination of these reviews is useful in assessing whether an existing PROM may be appropriate to use. Many of these reviews will also present a synthesis of each PROM with an assessment of its methodological quality and validity according criteria outline in more or more of the guidance documents available[2,44,61-65]
International Consortium for Health Outcome Measurement (ICHOM) (https://www.ichom.org/)	As part of a wider initiative ICHOM publish Standard Sets. ICHOM Standard Sets are defined as ‘standardized outcomes, measurement tools and time points and risk adjustment factors for a given condition. Developed by a consortium of experts and patient representatives in the field, our Standard Sets focus on what matters most to the patient’
Measures for Person Centred Coordinated Care (http://p3c.org.uk/about)	Set-up as a result of an NHS England funded project. This online resource describes itself as providing information “about measures for Person Centred Coordinated Care (“P3C”) for people with long-term conditions (LTCs), multiple-LTCs, and those at the end of their life (EoL)”. It provides a compendium of measures — defined as PROMs and patient reported experience measures (PREMs) — that can be utilised within programs that aim to deliver or evaluate P3C in the target populations”
European Organisation for Research and Treatment of Cancer (EORTC) (https://www.eortc.org/tools/)	Amongst other resources, the EORTC website provides a list quality of life questionnaires that have been developed and validated for cancer patients that are available for academic use
Oxford University Innovation/University of Oxford Clinical Outcomes Assessments (https://innovation.ox.ac.uk/clinical-outcomes/patient-reported-outcomes-measures/)	The PRO portfolio is made up of condition-specific questionnaires aimed at assessing the outcome for patients being treated for a range of medical conditions

PROMs: Patient reported outcome measures.