ISOQOL and Patient Reported Outcome Measures (PROMs)

What is ISOQOL?

ISOQOL is The International Society for Quality of Life Research. From their website https://www.isoqol.org/

Core Values

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL). Together, we are creating a future in which patient perspective is integral to health research, care and policy.

MISSION

The mission of ISOQOL is to advance the science of quality of life (QOL) and related patient-centered outcomes (PCO) in health research, care and policy.

VISION

ISOQOL will improve QOL for people everywhere by creating a future in which their perspective is integral in health research, care and policy.

PATIENT ENGAGEMENT

ISOQOL supports the patient voice in QOL and patient-reported outcomes (PRO) research. Patient engagement initiatives are intended to align ISOQOL’s priorities and infrastructure with efforts to establish best practices in patient engaged QOL research and create educational efforts and model programs that promote best practices and fulfill ISOQOL’s mission.

My involvement with ISOQOL

My involvement with ISOQOL began by attending its 2014 annual conference in Berlin when I presented the results of my MSc dissertation: A Rasch analysis of the PedsQL 3.0 Diabetes Module. I enjoyed it immensely, especially the mentor/mentee reception where I got teamed up to discuss my research and got to spend an hour with Jordi Alonso, one of the top researchers across this field.

It was unfortunate that I was not able to attend again until last year’s virtual conference but the work I had been doing since was clinical trials based and not therefore relevant to ISOQOL. Now doing this Doctoral Fellowship, my research on Patient Reported Outcome Measures (PROMs), psychometrics, content validity and computer adaptive tests for Rheumatoid Arthritis Disease Activity is therefore aligned again with ISOQOL. I presented two posters last year on a general overview of my research and the initial results of my systematic review. At that 2020 annual conference, I attended the psychometrics, statistics, new investigators and UK & Ireland Special Interest Group meetings. I noted in the UK & Ireland SIG Meeting that they did not have a chair elect, who would take over as chair at the next annual meeting, and thought I might apply. I had another mentor/mentee session with Sandra Nolte who thought it would be an excellent idea to apply; I did; and will now be starting as chair elect at this year’s annual conference (as there were two applicants so the other started as chair elect straight away).

A bonus of attending the conference is that it covers your membership fees for the society for the following year, so you get links to ISOQOL events put on by the special interest groups you sign up to, plus newsletters and other information.

The virtual conference set up is largely asynchronous with a few live virtual plenaries, educational workshops and roundtables (the latter two cost extra to attend and you can choose one of 12 roundtables and 8 workshops).

How did you get your poster accepted?

Much like last year’s process, there is an online submission process linked to the ISOQOL website. In submitting my poster, I also applied for a travel scholarship (though a legacy name for previous in-person conference, there was still an award to cover registration costs).

I submitted my abstract and travel scholarship application in mid-April, the abstract was accepted at the start of June and my selection for travel scholarship was notified in mid-June. It is notable that virtual conferences allow for enormous poster halls with no limitation on space; there were many hundreds of virtual posters last year, which could all be viewed throughout the 2 weeks the conference was held and another month afterwards.

What is main focus of the poster?

The poster is titled Patient Reported Outcome Measures for Rheumatoid Arthritis Disease Activity: a systematic review following COSMIN guidelines and summarises the important details of a systematic review I completed following that COSMIN guidelines, which are the globally accepted guidelines to assess patient reported outcome measures. The guidelines are extremely useful is a very difficult area to harmonise but still require some interpretation, so I was grateful to have experienced independent reviewers Rhiannon Macefield (Bristol), Lee Aiyegbusi (Birmingham) and Claire Beecher (Galway) to help me. Rhiannon, Lee and Claire are all members of the Patient Reported Outcomes theme within the MRC-NIHR Trial Methodology Research Partnership (TMRP) Outcomes Working Group. I presented the systematic review to the theme in May 2020 asking if anyone wanted to work as independent reviewers, and was ecstatic that all 3 of them got in touch afterwards.

Following the guidelines requires multiple risk of bias and quality ratings to be made, then summarised and summarised again to give a recommendation category for each PROM. None of the 10 PROMs identified in the review could fulfil the criteria for the top category (A)

“PROM has evidence for sufficient content validity (any level) and at least low-quality evidence for sufficient internal consistency. Therefore, the PROM can be recommended for use and results obtained with these PROMS can be trusted”

as none could provide evidence for sufficient content validity. Content validity is concerned with asking patients and health care professional about comprehensiveness, comprehensibility and relevance of the items in the PROM

How does this fit into to you wider work?

The result of this systematic review proves what we thought anecdotally of the PROMs available for RA DA; that none of them have sufficient psychometric properties. The result justifies collecting data to determine the best items that measure the unidimensional construct of RA DA according to Rasch measurement theory, which will create a potentially new PROM or provide further psychometric evidence for an existing one. The items in this PROM will be assessed for content validity: I will undertake cognitive interviews with 10 to 20 study participants who return data using think aloud techniques.

It is also Rheumatoid Arthritis Awareness Week this week (13-18 September 2021), which is organised by the National Rheumatoid Arthritis Society (NRAS). There is a focus on physical and mental wellbeing, with multiple events running through the week, which can be found here https://nras.org.uk/campaigning/ra-awareness-week/raaw2021/ It is therefore important to highlight this important piece of Rheumatoid Arthritis research.

How did you get an interest in this area?

I knew I wanted to spent more time doing research around PROMs and Rasch measurement theory following my MSc dissertation but I wasn’t sure which disease area I ought to apply it in. After completing my MSc, I started a new role working in CTR and in the CREATE – Cardiff Regional Experimental Arthritis Treatment and Evaluation – Centre with Professor Ernest Choy. In this role, I lead a systematic review of early phase clinical trials in RA, which involved spending time looking at the outcomes used in these trials. The primary outcome was always RA DA but was never measured using a PROM. I started having a look into the available PROMs for RA DA and it seemed like there was plenty more research that could be done in the area. Between myself and Professor Choy, we thought I could apply for an NIHR Doctoral Fellowship so that I could pursue my interests in PROMs and Rasch measurement theory, applying that interest to RA DA, and simultaneously work to get a PhD.

What are you hoping your work could do?

Following on from the above mentioned cognitive interviews, the endgame is to create a computer adaptive test (CAT) built on the items we find that can be used to measure RA DA. A CAT allows for digital capture of this outcome with a minimal number of item responses required as the CAT algorithm can estimate the score based the known item difficulties and the responses given.

What stage are you at in your work?

I am coming to the end of the 2^nd year of my fellowship and PhD, but data collection was significantly delayed by the pandemic and my first attempt at collection solely in Cardiff and Vale University Health Board only gleaned 291 of the desired 500 responses. I have already sought a 5 months funded extension from Health and Care Research Wales and will be applying for another extension soon.

What’s been most unexpected so far?

Being invited to become chair elect of the ISOQOL UK & Ireland SIG was very surprising and I am really looking forward to working with Grace Turner (Birmingham) as past chair and Jon Evans (Exeter) as chair starting at the annual conference in October. A surprising aside was that I saw an advert through the UK & Ireland SIG for panel members for a grant writing event being run by the Mixed Methods SIG. I figured that my work fell under that bracket so I put my hand up and said I could do it. I was asked to join this panel (which was unlikely enough) and later found out that the other panel members are world-leading professors based in Canada.

I recently presented on the same topic at the UK National PROMs Research Conference, which is the image at the top of this post.