ASRM2010: EndoCare study wins prize

Denver, 25 October 2010

The ASRM Nurses Professional Group today awarded a prize for the work of Eline Dancet, midwife and PhD student at Leuven University Hospital, Belgium, for her work in developing a reliable instrument to evaluate the  patient-centredness of endometriosis care.

Eline Dancet

Eline Dancet RM

For this pilot/validation study Ms Dancet and her team developed a 43 item questionnaire based on:

  • a literature review
  • content analysis of two focus groups with patients
  • an expert panel.

For each item ‘important’ and ‘experience’ was measured using the Likert scales. Demographic end medical questions were added, and the questionnaire was pilot tested and translated (iterative) from Flemish into English, Italian and Dutch.

541 women diagnosed with endometriosis, recruited via patient organisations and clinics in Italy, the UK, the Netherlands, and Belgium, filled out the questionnaire online.

Item analysis, interim analysis and Principal Component Factor Analysis (oblique rotation) were conducted to validate the questionnaire along with a reliability analysis of factors.

Questionnaires were completed by women witout a partner were excluded, since three items were not relevant to them. Item analysis deleted a further three items. The factor analysis was performed on 322 questionnaires and 40 items and resulted in eight factors.  Reliability analysis deleted another two items.

The results of this validation study showed that seven domains of patient centred endometriosis care can be reliably measured: ‘caregivers’, ‘patient information and involvement’, ‘partner involvement’, ‘personalised care’, ‘emotional support’, ‘flexibility and waiting’, and ‘timeliness’. One domain, ‘organisation’, cannot be measured reliably but was preserved  due to the high response rate and importance score.

A valid and reliable instrument to measure patient centredness of endometriosis care is now available, and has subsequently been used in a study conducted during the first half of 2010, where almost 4,000 women in ten countries filled in the questionnaire. This study, from which results are still pending, may serve to benchmark clinics and countries for patient-centeredness, compare the patients’ perspectives regionally and culturally, and set targets for health care providers and policy makers for improvement in the care of endometriosis.

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