Patient and Family Outcomes
Cross-source consensus on Patient and Family Outcomes from 1 sources and 5 claims.
1 sources · 5 claims
Preparation
Other
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Highlighted claims
- The study aims to assess patients’ and family members’ healthcare use and perceived personal utility. — Understanding the impact of genomic secondary findings on clinical care and patient experience: a protocol for a prospective observational study
- Patient or parent questionnaires are administered at baseline and every six months for two years. — Understanding the impact of genomic secondary findings on clinical care and patient experience: a protocol for a prospective observational study
- The baseline questionnaire covers sociodemographics, medical history, health resource use, out-of-pocket costs, perceived utility, and psychological or impact measures. — Understanding the impact of genomic secondary findings on clinical care and patient experience: a protocol for a prospective observational study
- The patient questionnaires were co-designed with patient partners and pilot-tested with adults and parents who previously received secondary findings. — Understanding the impact of genomic secondary findings on clinical care and patient experience: a protocol for a prospective observational study
- Follow-up questionnaires track services used since the previous assessment and changes in perceived utility over time. — Understanding the impact of genomic secondary findings on clinical care and patient experience: a protocol for a prospective observational study