Page 66 - Let them speak Towards a patient reported outcome measure set for

Chapter 3
aspects on the ‘Cheer wall’), the impact of a GID on daily life will be
discussed.
Part 2 – By using the ‘Brainstorming’ technique (43) (i.e., generating
and discussing new ideas together), relevant topics regarding
physical, mental and social functioning to discuss with the healthcare
professional during a consultation will be discussed.
The PROs emerging from the focus groups and interviews will be classified
within the conceptual framework by the Study Management Group.
Step 2: Integrating and conceptualizing PROs
Step 2.1 Expert group meeting
The PROs established and classified in step 1.1 to step 1.3 will be integrated
into a pilot generic core PRO set. PROs will be eliminated where appropriate
(e.g., duplicate or no PRO, such as behavior) and multidimensional PROs
will be separated into unidimensional PROs whenever possible. For
example, the multidimensional PRO ‘adaptive functioning’ will be separated
into unidimensional PROs: ‘communication’, ‘daily living skills’, and ‘social
functioning’. The PROs will be conceptualized to ensure clear PRO definition.
Shared experiences identified by the focus groups and interviews, as well
as those found in the literature and guidelines, will be used to conceptualize
the PROs. This approach aims to ensure the applicability of the PRO
conceptualizations to all GID groups. As experiences are meant to be
generic, we expect them to remain manageable and describable within
the conceptualization of a generic PRO. Eventually, a reduced and clearly
defined list of PROs will remain, classified into the conceptual framework:
the pilot generic core PRO set. Step 2.1 will be performed by the Study
Management Group and two PROM/COS experts.
Step 3: Prioritizing the relevant PROs
Step 3.1: European Delphi survey
A European Delphi survey will be performed to reach consensus on
which PROs should be included in the final generic core PRO set. A Delphi
survey is a technique used to gain consensus among relevant experts or
stakeholders. The Delphi method typically involves multiple rounds in which
participants remain anonymous in the surveys (44).
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