Page 207 - Let them speak Towards a patient reported outcome measure set for

General discussion
Several challenges were identified regarding the use of patient reported
outcomes (PROs) and patient reported outcome measures (PROMs) for
individuals with GID (Table 1). Accordingly, this research aimed to develop a core
PRO(M) set for children and adults with GID. This was achieved by identifying
more issues surrounding the use of PROs and PROMs and develop a strategy
to address these challenges (Part 1). Subsequently, a core PRO set was
established by identifying and prioritizing relevant PROs (Part 2). Finally, a core
PROM set was developed by selecting PROMs and psychometrically testing
them in the GID population (Part 3). This chapter summarizes the key findings,
reflects on their implications, discusses methodological considerations, and
outlines directions for future research and implementation.
Table 1. PRO and PROM challenges for GID.
PROs PROMs 1. Unclear which PROs are most relevant to individuals with GID
2. PROMs are lengthy and complex for GID
3. PROMs are often not psychometrically tested for GID
4. PROMs are not routinely implemented in care for GID
PROs, patient reported outcomes; PROMs, patient reported outcome measures.
The challenge addressed; challenge partly addressed; challenge not addressed.
Main findings
Part 1: A myriad of PROs
The first part of this thesis examined the range of outcomes and
instruments, including PROs and PROMs, used in clinical trials involving
individuals with GID through a scoping review. Chapter 2 identified 91
distinct outcomes, with cognitive function most frequently assessed. A total
of 457 different outcome measurement instruments were used, including
over 200 PROMs. Of these outcome measurement instruments, 288 (63%)
were used in only one clinical trial, and 16 (4%) were self-designed for a
specific trial. To address the wide variation in PROs and PROMs, Chapter 3
proposed a strategy to develop a generic core PRO set for individuals with
GID, intended for use in both care and research. This strategy included
identifying potentially relevant PROs by scoping reviews and a qualitative
study, discussing these PROs with an expert group, and prioritizing them
through an international Delphi study and consensus meetings.
8
205