Translation, Cross-Cultural Adaptation, and Psychometric Evaluation of the Swedish Version of ENDOCARE: An Instrument to Measure Patient Centeredness of Endometriosis Care.

Objectives The need for quality improvement within endometriosis healthcare is widely acknowledged. The ENDOCARE questionnaire (ECQ) measures patient centeredness of endometriosis care. The aims of this study were (1) to translate and culturally adapt ECQ into Swedish, (2) to evaluate validity (construct validity), and (3) to measure reliability (internal consistency and test-retest reliability). Design This is a cross-sectional randomized study. Participants, Setting, and Methods: ECQ was first translated according to a well-established guideline and was thereafter sent to 500 randomly selected women with endometriosis, who had visited participating clinics during the past 3 years. The first 150 women who returned their questionnaires were immediately sent the same questionnaire again. The ECQ consists of 3 parts. The first part contains demographic and clinical questions, while part II has 38 items that are answered according to 2 aspects: percentage of negative experience of care and mean personal importance. A patient-centeredness score (PCS) is calculated based on these 2 aspects. The items are also divided into 10 dimensions of care. Part III is a grading of overall experience and an open-ended question on any missing aspect in the questionnaire. Results A total of 187 native Swedish-speaking women participated. Data completeness was high (>90%). The overall PCS median was 3.5. The highest median PCS was found in the dimension regarding endometriosis clinic staff and the lowest in emotional support and alleviation of fear and anxiety and the involvement of significant others. Factor analysis could roughly confirm 2 of the 10 dimensions. The Cronbach's α coefficient for PCS ranged from 0.35 to 0.73. The test-rest analysis showed acceptable reliability. Limitations The most important limitation was the relatively low participation rate and the risk of recall bias. It is likely that women gave their answers based on their most recent experiences. Conclusions Overall, our results indicate that the Swedish version of the ECQ is a usable instrument to measure patient centeredness in endometriosis care, but due to the unstable factor analysis, conclusions based on the dimensions should be made with caution.