Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

STUDY QUESTION: What is the performance of the patient-centredness of endometriosis care in a secondary and a tertiary care setting and how can it be improved? SUMMARY ANSWER: Overall, patient-centredness was comparable in the two endometriosis care centres, but differed regarding 'physical comfort' and 'continuity and transition'; both centres can learn how to improve several of their targets from the other's strengths. WHAT IS KNOWN ALREADY: The ENDOCARE questionnaire (ECQ) is a validated questionnaire for assessing the important quality dimension 'patient-centredness'. Patient-centredness is associated with quality of life, although this should be explored further by larger-scale studies. STUDY DESIGN, SIZE, DURATION: A cross-sectional survey, relying on the ECQ, was performed (during 2015 and 2016) among 407 women with surgically diagnosed endometriosis. PARTICIPANTS/MATERIALS, SETTING, METHODS: This study was conducted in a secondary and a tertiary care centre in the Netherlands. A total of 209 Dutch-speaking women who had endometriosis surgery (2013-2014), completed the ECQ after a postal invitation and, if needed, postal reminders. The assessed outcomes were: overall patient-centredness, the patient-centredness for each of its 10 dimensions, and the patient-centred strengths and targets for improvement. Case-mix adjusted patient-centredness scores (PCS) were compared and strengths and targets for improvement were identified with a matrix modelling importance against experience. The need to improve the targets was quantified with quality impact indices. MAIN RESULTS AND THE ROLE OF CHANCE: No difference was demonstrated between the overall PCS of the secondary and tertiary centres (respectively: 4.8 and 4.5; P=0.15). No difference was found in PCS per dimension between the two clinics except for the secondary care centre performing better regarding 'physical comfort' (respectively: 4.5 and 3.0; P=0.01) and 'continuity and transition' (respectively: 6.0 and 4.2; P=0.01). The two centres had nine targets for improvement in common. The secondary and tertiary centres, respectively, had five and seven additional centre-specific targets for improvement. Cross-centre learning is encouraged as 9 out the 12 additional centre-specific targets were strengths in the other centre. The main improvement targets were being able to contact the centre in case of emergency (both centres), the involvement of a significant other (secondary centre), diagnostic delay (secondary centre), personal follow-up (tertiary centre) and disclosing the level of competence of healthcare providers (tertiary centre). LIMITATIONS, REASON FOR CAUTION: Responders did not differ from non-responders in their stage of endometriosis, educational level, rating of endometriosis care and degree to which their complaints are suppressed. Endometriosis is a chronic condition and patient-centredness might be experienced differently at other points of the endometriosis care trajectory. WIDER IMPLICATION OF THE FINDINGS: The ECQ is a useful tool to assess patient-centredness in both secondary and tertiary care centres. Further research should focus on how to improve endometriosis care.