The ENDOCARE questionnaire guides European endometriosis clinics to improve the patient-centeredness of their care

Dancet, Eline; Apers, Silke; Kluivers, Kirsten B.; Kremer, J.A.M.; Sermeus, Walter; Devriendt, Chaja; Nelen, W.L.D.M.; D’Hooghe, Thomas

doi:10.1093/humrep/des299

Cited by 29 publications

(53 citation statements)

References 64 publications

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“…Specialized tertiary endometriosis clinics aiming to identify clinic-specific targets for patient-centered improvement projects could use the published, freely available ENDOCARE questionnaire developed by our group based on insights from this review and validated and reliable for Europe [24,63]. The ENDOCARE questionnaire meets the 8 methodological requirements for questionnaires [21,64], evaluates the 10 dimensions of patient-centered endometriosis care and allows the identification of improvement targets [24].…”

Section: Discussionmentioning

confidence: 99%

The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

Dancet¹,

Apers

Kremer

et al. 2014

Gynecol Obstet Invest

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Background: Endometriosis is a prevalent condition compromising physical and psychosocial health and thus requiring patient-centered care, which is guided by patients' values.This study aimed to find out what the patient's perspective on endometriosis care is and how the patient-centeredness of endometriosis care can be improved. Methods: Electronic databases were searched systematically, and study selection was based on eligibility and quality. Study methodology was examined. Specific care aspects valued by patients were organized according to 10 dimensions of patient-centered endometriosis care. Based on patients' assessments of service quality, patient-centered improvement targets and strengths were identified. Results: Twelve of 20 eligible studies had sufficient quality to be included. Endometriosis patients valued all 10 dimensions of patient-centered endometriosis care. Problematic service quality was reported for all dimensions but ‘coordination and integration' and ‘involvement of significant others'. Two patient-centered strengths and 29 patient-centered improvement targets were identified. The most frequently reported improvement targets on which studies agreed were ‘timely diagnosis' and ‘being believed and respected by staff'. Conclusion: Endometriosis patients value patient-centeredness in addition to effectiveness and safety of care, and its 10 dimensions require attention in clinical practice. Research into the assessment and improvement of patient-centered endometriosis care is required.

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Section: Discussionmentioning

confidence: 99%

The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

Dancet¹,

Apers

Kremer

et al. 2014

Gynecol Obstet Invest

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“…Obstetric-gynecological history. The obstetric-gynecological history investigated: any use of hormonal contraceptives, the reason why they are taken, any previous abortion, pregnancy, the age at which the menstrual cycle began, its regularity, frequency, the heaviness and length of menstrual bleeding, dysmenorrhea, any consequence on usual daily life, painful defecation during menstrual cycle, dyspareunia and chronic pelvic pain unrelated to the menstrual cycle [40]. Some studies showed that women who have endometriosis are more likely to have experienced premature menarche and more regular and shorter menstrual cycles, with more massive and longer bleeding than controls [41].…”

Section: Questionnaire Designmentioning

confidence: 99%

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

et al. 2020

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Background Endometriosis is a debilitating gynecologic disease characterized by the implantation of endometrial tissue in ectopic locations, with signs of severe and chronic inflammation. The new knowledge on endometriosis has highlighted the value of secondary prevention through the early diagnosis and treatment of lesions to reduce serious consequences, first of all, infertility and chronic pelvic pain. The purpose of this study is to assess the reliability and validity of the questionnaire, as a tool to precociously identify women with endometriosis, to prevent the progression of symptoms. Method We reviewed the literature and selected risk factors, symptoms, and phenotypic traits of the women affected by endometriosis to create the questionnaire divided into 8 modules, with 47 questions. A total of 151 women completed the questionnaires: 51 patients who have endometriosis (the cases) and 100 matched women without endometriosis (the controls). After data collection, bivariate and multivariate analyses were conducted. Results We retained four of the significant variables from a step-down logistic regression, namely chronic pelvic pain, dyspareunia with VAS�3, painful defecation, and acne, to develop a final "predictive" logistic model achieving 90.2% sensitivity and 75% specificity. Conclusion Our pilot study demonstrated that the questionnaire provides a powerful tool for the secondary prevention of endometriosis.

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“…In women with endometriosis, patient-centredness can be measured with the ENDOCARE questionnaire (ECQ), which has been validated in tertiary care centres ( Dancet et al , 2011 , 2012 ). The current study aimed to investigate patient-centredness of endometriosis care in a secondary care setting and a tertiary care setting and aimed to investigate how patient-centredness can be improved.…”

Section: Introductionmentioning

confidence: 99%

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

Schreurs

Wijsard

Dancet

et al. 2020

Human Reproduction Open

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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. STUDY FUNDING/COMPETING INTEREST(S) No external funding was used. V.M. and C.B.L. report grants from Guerbet, grants from Merck and grants from Ferring outside the submitted work. All authors declare that they have no competing interests concerning this publication.

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The ENDOCARE questionnaire guides European endometriosis clinics to improve the patient-centeredness of their care

Abstract: This work was funded by KU Leuven and European Network of Endometriosis (ENE), supported by the European Commission (Public Health Executive Agency). No competing interests are declared.

Cited by 29 publications

References 64 publications

The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

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

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