Page 227 - Let them speak Towards a patient reported outcome measure set for

General discussion
embed the patient perspective on their own health and functioning, thereby
supporting more personalized care for this vulnerable population group.
To illustrate the yields of this thesis, I will present a future patient case:
This time, things are different for Emma, the 30-year-old woman
with fragile X syndrome and mild intellectual disabilities. Prior
to the appointment with her physician, she is asked to complete
the core PROM set for GID at home using the KLIK PROM
portal. Completing the set takes approximately 20 minutes.
The set includes questions about her anxiety, prompting
Emma to reflect on what she would like to discuss during the
consultation. However, some items remain difficult for her
to understand. Before seeing Emma, the physician reviews
Emma’s PROM results and notes high scores on anxiety. During
the consultation, he now not only addresses her physical health,
but also initiates a conversation about her mental functioning.
Emma feels understood and becomes more comfortable
sharing her concerns. Together, they explore treatment options
and agree on referral to a psychologist to reduce her anxiety.
Emma leaves the appointment feeling supported and satisfied
with the care received by her physician.
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Figure 3. Patient case: Emma.
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