Patient involvement in complex evidence syntheses provides valuable background experience and may supplement clinical findings

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (4)

Date: 

Sunday 16 September 2018 - 16:20 to 16:30

Location: 

Carrick 1

All authors in correct order:

Brazzelli M1, Montgomery I2, Imamura M1, Hudson J1, Javanbakht M3, Moloney E3, Wallace S4, MacLennan G5, Vale L6, Craig D6
1 Health Services Research Unit, University of Aberdeen, UK
2 Patient and Public Involvement Lay Representative, UK
3 Health Economics Group, Institute of Health & Society, Newcastle University, UK
4 Cochrane Incontinence Group, Institute of Health & Society, Newcastle University, UK
5 Centre for Healthcare Randomised Trials (CHaRT), Health Services Research Unit, University of Aberdeen, UK
6 Evidence Synthesis Group, Institute of Health & Society, Newcastle University, UK
Presenting author and contact person

Presenting author:

Miriam Brazzelli

Contact person:

Miriam Brazzelli
Abstract text
Background:
Public involvement in evidence syntheses and health technology assessments (HTAs) is essential. However, the degree of involvement and how this is reflected in the published reports still varies widely. We describe our experience of involving a member of the public in a complex NIHR HTA assessing the clinical and cost-effectiveness of surgical treatments for women with stress urinary incontinence (ESTER). Surgical interventions for stress urinary incontinence (SUI) have changed over the last decade with less invasive mesh techniques available to women. However, recent concerns regarding supposed severe adverse effects from mesh procedures have caused anxiety in women and uncertainty for clinicians and decision-makers.

Methods:
This was an evidence synthesis and economic decision model, with a value of information analysis. We compared nine surgical interventions for the treatment of SUI. We assessed primary outcomes (cure and improvement rates) in a network meta-analysis (NMA). We analysed data on adverse events, when possible, using pair-wise meta-analyses. The Advisory Group for this project included, among others, patient representatives. In particular, one patient representative was involved as project advisor and formal grant holder, integral to shaping the initial proposal and scope. She contributed to all phases of the research process and attended both Project and Advisory Group meetings.

Results:
Data from 175 RCTs were included in the effectiveness review. The NMA results (121 RCTs) indicated that traditional slings and retropubic mid-urethral slings (MUS) were most likely to cure or improve SUI. Retropubic MUS were also the most cost-effective option. Data for adverse events were limited. Our patient representative helped identify patient-centred issues, guided the direction of work and selection of outcomes, informed the economic modelling and provided perspectives on the advocacy against mesh use. This allowed a fuller contextualisation of the clinical findings. She provided comments on the report and wrote the plain language summary.

Conclusions:
Involving members of the public in complex evidence syntheses can be challenging. Our experience demonstrated that the contribution of a patient representative improved our findings by providing invaluable insight and information that was otherwise unavailable.

Relevance to patients and consumers: 

We describe the involvement of a patient representative in a complex evidence synthesis which included a review of clinical effectiveness and an economic decision model, with a value of information analysis. The patient representative was involved as project advisor and formal grant holder. She contributed to all phases of the research project. In particular, she highlighted patient-centred issues, contributed to inform the development of the economic model and provided invaluable insight and information that was otherwise unavailable.