PIH51 What Do Patients with Rare Diseases Experience in the Medical Encounter? Exploring Patient-Physician-Interaction Patterns, Its Antecedents and Its Consequences

Abstract

ing 95.51 Ϯ 10.09. Mean rate of own health on EQ-VAS was 80.30 Ϯ 15.21 and mean EQ-5D index, based on Polish TTO value set, was 0.94 Ϯ 0.07 (in the range from -0.523 to 1). Students of 1 st year reported lowest QoL independently of the measure used: EQ-VAS 76.4 Ϯ 17.72 and EQ-index 0.92 Ϯ 0.07. CONCLUSIONS: Generic questionnaires used in the survey are sensitive enough for measuring quality of life in young and relatively healthy population. Students of 1 st year reported lowest quality of life with all questionnaires. The survey needs to be continued in next years.

Childhood/adolescent Sydenham’s chorea in the UK and Ireland: a BPSU/CAPSS surveillance study

“…Reports also suggest that SC is often not recognised promptly 6 7 10. Rare conditions may have greater impact on families, who may become more isolated, lack information on prognosis and experience more diagnostic delays 11–16. This research was therefore developed in partnership with the family-led charity, the Sydenham’s Chorea Association (http://www.sydenhamschorea.org.uk/).…”

“…6 7 10 Rare conditions may have greater impact on families, who may become more isolated, lack information on prognosis and experience more diagnostic delays. [11][12][13][14][15][16] This research was therefore developed in partnership WHAT IS ALREADY KNOWN ON THIS TOPIC ⇒ Sydenham's chorea (SC) is considered a rare disease, but there have been no previous prospective surveillance studies in the UK and Ireland.…”