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Sharing Experiences With PRO Surveys
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Hi Everyone,
Have any of you been asked to complete a PRO survey during your treatment? As you know, PRO stands for Patient-Reported-Outcomes.
These surveys are intended to help the research and healthcare communities understand the impact of medical treatments on patients in terms of side effects and disease symptoms.
Personally, I have completed such surveys and have found them to be somewhat frustrating, primarily because they tend to be too black or white and lose the richness of nuance and personal experience that are better expressed in my own words.
If someone has experience of PROs, whether positive or negative, I would welcome the sharing of your experience.
Did the survey capture the reality of your myeloma experience? Were you satisfied that your answers were providing helpful information about your experience to the research or healthcare team?
Did you invest time and effort in your responses or did you simply respond to satisfy the team's request?
Finally, do you feel that the survey captured the range, intensity, and duration of the side effects you experienced?
Thank you in advance for sharing. And good luck on your myeloma journey
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