Page 238 - Let them speak Towards a patient reported outcome measure set for

Addendum
This thesis ends with Chapter 8, the general discussion. This chapter reflects
on the main findings and their implications, and addresses methodological
considerations, including the international applicability of the core PROM
set and its relevance for specific genetic conditions. Directions for
future research are also outlined, including the evaluation of additional
psychometric properties, adaptation of the PROM set for individuals with
ID, and implementation of the set in care and research.
Conclusion
Measuring PROs using PROMs for individuals with GID was challenging
due to uncertainty about the most relevant PROs, the length and complexity
of available PROMs, and limited psychometric evaluation in this population.
Use of PROMs in GID care was scarce. This thesis partly addressed these
challenges by developing a core PRO(M) set for children and adults with
GID. We propose to use this set in care and research to measure what
matters to affected individuals and include patient perspective on their
health and functioning. Further research is needed to evaluate additional
psychometric properties of the core PROM set, to determine whether and
how the set should be adapted for individuals with ID, and to implement the
set in clinical care and research.
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