Health-related Quality of Life in Chiari Malformation Type 1 - A National Cross-Sectional Patient Survey

Condition(s) studied

Study summary

The goal of this observational survey study is to investigate factors that may affect the health-related quality of life (HRQoL) in adults with Chiari malformation type 1 (CM1). The main questions it aims to answer are:

How do CM1 patients rate their HRQoL compared to the general population? Are there any factors that lead to better or worse HRQoL in CM1 patients? Is there a difference in HRQoL in operated versus non-operated CM1 patients?

Participants will be identified via the Swedish National Board of Health and Welfare's Patient register. They will be asked to participate in a survey of HRQoL containing standardized questionnaires, and their answers will be analyzed together with data from the Patient register. Their questionnaire answers will also be compared to normative Swedish data.

Eligibility

Primary outcome measure(s)

• EQ-5D index score — Baseline
  Combined value of the five dimensions of the Euroqol five-dimensional three level (EQ-5D-3L) questionnaire, based on the United Kingdom value set. The index score has a value between 0 and 1, where 1 represents full health.
• EQ-5D VAS score — Baseline
  The Euroqol five-dimensonial (EQ-5D) visual analog scale (VAS). The respondents rate their current health between 0 (worst imaginable health) and 100 (best imaginable health).

Trial sites (1)

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