Cardiomyopathy PSP question verification form

The purpose of this Question Verification Form is to enable Priority Setting Partnerships (PSPs) to describe clearly how they checked that their questions were unanswered, before starting the interim prioritisation stage of the process .

The JLA requires PSPs to be transparent and accountable in defining their own scope and evidence checking process. This will enable researchers and other stakeholders to understand how individual PSPs decided that their questions were unanswered, and any limitations of their evidence checking.

Name of the PSP

Cardiomyopathy

Please describe the scope of the PSP

For the purposes of this PSP cardiomyopathy is defined as an ‘inheritable intrinsic disease/primary problem with the heart muscle’.

The scope of the Cardiomyopathy PSP will include:

1. Diagnosis (to include assessment of symptoms and investigations);
2. Treatment (including ongoing care and management);
3. Genetic testing, and/or family screening;
4. Lifestyle, physical activity & exercise;
5. Causes;
6. Comorbidities;
7. Outcomes of the conditions for individuals and their family;
8. Impact of the conditions on individuals and their family (including i.e., physical, psychological, social, educational, travel);
   
   associated with all types of cardiomyopathies, including rarer types. It will exclude from its scope questions about:

• Ischemic cardiomyopathy (cardiomyopathy due to coronary artery disease);
• Syndromic cardiomyopathies (cardiomyopathy as part of wider genetic syndromes associated with cardiomyopathy); and
• Hypertension in those without cardiomyopathy and with hypertensive heart disease only due to high blood pressure.

The scope is limited to respondents from the UK.

Please provide a brief overview of your approach to checking whether the questions were unanswered

An information specialist was used to complete the evidence check. Only systematic reviews and meta analysis was considered to ensure that the question had been answered to a high quality with evidence.

For each indicative question all relevant research papers noted, and a summary provided to what degree the question had been answered.

For a question to be considered answered within the scope of the PSP the existing evidence must be applicable to all types of cardiomyopathies (i.e. if research exists for only DCM this was not sufficient to stop the question from proceeding to the next stage) .

Results of the evidence check were published back to the steering group with a traffic light system:
Red – It's been answered. The question does not proceed to the prioritisation survey.
Yellow – It’s been partially answered or the evidence was poor. Discussion required.
Green – Completely unanswered

All outcomes were reviewed by a specific evidence sub-group, ‘Yellow’ questions, those that are partially answered, were discussed by the evidence sub-group, and their recommendations for these questions put before the steering group for agreement.

Please list the type(s) of evidence you used to verify your questions as unanswered

Systematic reviews, meta analysis of existing research literature

The 2023 European Society of Cardiology (ESC) Guidelines for the management of cardiomyopathies

The 2020 ESC Guidelines on sports cardiology and exercise in patients with cardiovascular disease

Please list the sources that you searched in order to identify that evidence

PubMed (online database)

PsycInfo (online database)

The 2023 ESC Guidelines for the management of cardiomyopathies

The 2020 ESC Guidelines on sports cardiology and exercise in patients with cardiovascular disease

What search terms did you use?

“cardiomyopathy” and “systematic review” or “meta-analysis”

Please describe the parameters of the search (eg time limits, excluded sources, country/language) and the rationale for any limitations

The steering group decided that a timescale of 3-5 years was reasonable. Searches were completed from 2020 onwards (providing ~3 and a half years of research history). This is in line with the currently recommendation from the JLA of the last 3 years.

Steering group expertise was sought regarding whether reviews regarding treatment of heart failure need to be considered (key research that included cardiomyopathy).

Steering group expertise was sought regarding whether any well known reviews from previous years should be included. None were identified.

Names of individuals who undertook the evidence checking

Kristina Staley

Steering group members Jayne Partridge and Tootie Bueser.

On what date was the question verification process completed?

26th September 2023

Any other relevant information

As part of the evidence check process those questions that were yellow (ie partially answered) were reworded to capture what still needed to be answered. This change was ratified by the steering group.