Women with endometriosis often present with abdominal pain, dysmenorrhoea, dyspareunia and infertility. As a definitive cure for endometriosis is lacking, women with endometriosis are usually in need of long-term treatment which may be recurring if periods of non-treatment are employed. Women with endometriosis often report the feeling of not being heard, not taken seriously and having had different advices from different health care providers. Around half of women with endometriosis are dissatisfied with their medical support. Clear and consistent counselling is one of the important aspects of care that women with endometriosis report to be poor. Infertile women with endometriosis need to consider different aspects before being able to conceive: i) each natural cycle no pregnancy is achieved, endometriosis complaints might recur or aggravate, ii) hormonal treatment of endometriosis is contraceptive and prevents pregnancy, iii) surgical treatment might increase natural chances or make ART possible but could cause ovarian damage, and iv) ART might shorten time to pregnancy and increase chances, but does not allow for natural conception. Advice on fertility care, including ART and surgery, is often based on moderate to poor quality evidence and experts’ opinions. It is important to be able to counsel women with endometriosis adequately, especially when multiple treatments are available and there is no one perfect treatment. Therefore, good quality of care and insights in patient preferences are key. It is important to understand current patient-centeredness of endometriosis care. What can be improved? How can we best support women with endometriosis? What do they need? What are their experiences and how should we change our care in the future?
Study question How completely reported are studies on blood biomarkers of endometriosis, according to their adherence to the STARD 2015 checklist? Summary answer Studies on blood biomarkers of endometriosis are often incompletely reported, with only an overall adherence rate of 28.5% to the STARD 2015 checklist. What is known already Laparoscopy, the gold standard diagnostic method for determining endometriosis, is invasive, expensive, requires anesthesia and is associated with risk of vascular/ visceral damage. Therefore, less invasive diagnostics are needed. Many studies have been published on blood biomarkers of endometriosis with variable methodological quality. To assess applicability and risk of bias of diagnostic accuracy studies, completeness of study reporting must first be ensured. STARD 2015 checklist was introduced to guide reporting of diagnostic accuracy studies. The degree of adherence in studies on blood biomarkers of endometriosis to this 30-item STARD 2015 checklist is not known. Study design, size, duration Our systematic review included 126 studies from the 2016 Cochrane review on blood biomarkers of endometriosis. We added 84 more studies after updating the search in Pubmed, CINHAL and Web of Science, for the period May 2015- July 2021, with the keywords: endometriosis and biomarkers/ non-invasive diagnosis/ laboratory tests/ blood test, using the same eligibility criteria as in the Cochrane review. Totally, 210 studies were assessed for adherence to STARD 2015 checklist. Participants/materials, setting, methods STARD 2015 items were scored 1 if reported, or 0 if unreported. Each study received an adherence rate (percent of reported STARD items). Every item received individual item’s reporting rate (percent of its reporting across studies). Effect of publication year on study adherence and item reporting rates was examined by linear and logistic regressions, respectively. Journal impact factors were classified to tertiles and their relation to study adherence rate examined with one-way ANOVA. Main results and the role of chance Adherence rate was 28.5%, with 8.8± 3.1 reported items per study (range 2-18). Study adherence to STARD 2015 significantly increased with advancing publication years [r = 0.344 (95% CI 0.219 – 0.458), p < 0.001]. Journal impact factor had no effect on adherence to STARD 2015 (P = 0.274). Items with reporting rates >50% included #1 (identification as diagnostic accuracy study), #5 (prospective or retrospective), #7 (participants identification), #10a (index test), #10b (reference standard), #14 (diagnostic accuracy measures), #21a (disease severity), #21b (alternate diagnosis), and #22 (time between index test and reference standard). Items with reporting rates 20 to 50% included #6 (eligibility criteria), #8 (when/ where participants identifies), #12a (test positivity cutoff), #20 (participant characteristics) and #26 (limitations). Reporting rate < 20% seen in items #3 (background), #4 (hypothesis), #9 (consecutive /random recruitment), #13a/b (blinding of index test/ reference standard performers), #15 (intermediate results), #16 (missing data), #17 (analysis of variability), #18 (sample size), #19 (flow diagram), #23 (cross tabulation), #24 (diagnostic accuracy precision), #25 (adverse events), #27 (implications), #28 (registration), #29 (protocol), #30 (funding). Reporting improved for items: #1, #8, #10a, #10b, #12a, #14, #17, #18, #19, #20 and #25 and declined for items #9, #21a and #27 over publication years. Limitations, reasons for caution As the consequence of our choice to adhere to the methodology of the original Cochrane review, a limitation of our study is that we excluded non-English language studies and limited the search to the previously chosen 3 databases only. Wider implications of the findings With inadequately reported diagnostic accuracy studies, the derived evidence can be misleading. Our findings represent a baseline evaluation of the reporting status of studies on blood biomarkers of endometriosis. Our results can guide researchers and editors about poorly reported STARD 2015 items, aiming to improve their future reporting quality. Trial registration number PROSPERO # CRD42021259990
Study question To examine the hypothesis that experiences with patient-centred endometriosis care are associated with the endometriosis-specific quality of life dimensions ‘emotional wellbeing’ and ‘social support’. Summary answer Positive associations were found between experienced patient-centeredness of care and the quality of life domains ‘emotional well-being’ and ‘social support’. What is known already Women with endometriosis have lower quality of life. Furthermore, research showed that the patient-centeredness of endometriosis care could still be improved. The quality of the provided endometriosis care might impact women’s quality of life, as demonstrated in the field of fertility care. A previous explorative study identified associations between patient-centred endometriosis care and two in five dimensions of endometriosis-specific quality of life (i.e. ‘emotional well-being’ and ‘social support’) but concluded that a more focussed and adequately powered study was needed. Study design, size, duration A secondary regression analysis of two cross-sectional cohort studies was performed. Both studies investigated patient-centeredness of endometriosis care and endometriosis-specific quality of life using respectively the ENDOCARE questionnaire (ECQ) and the Endometriosis Health Profile 30 (EHP-30). In total the data from 300 women was eligible for analysis, exceeding the, according to our power calculation, required sample size of 200 women. Participants/materials, setting, methods The participating women all had surgically proven endometriosis and were recruited by one secondary and two tertiary endometriosis clinics in the Netherlands. The regression analysis focused on the previously found association between the ten dimensions of the ECQ and the EHP-30 domains ‘emotional well-being’ and ‘social support’ rather than all five EHP-30 domains. After the Bonferroni correction to limit type I errors, the adjusted p-value was 0.003 (0.05/20). Main results and the role of chance The participating women had a mean age of 35.7 years and had predominantly been diagnosed with moderate to severe (68.6%). Regarding the EHP-30 domain ‘emotional well-being’, an association was found with the following five patient-centeredness dimensions: ‘respect for patients’ values, preferences and expressed needs’ (p = 0.046, Beta=0.159), ‘coordination and integration of care’ (p = 0.013, Beta=0.193), ‘information, communication and integration of care’ (p = 0.010, Beta=0.258), ‘emotional support and alleviation of fear and anxiety’ (p = 0.010, Beta=0.178), and ‘continuity and transition’ (p = 0.015, Beta=0.179). None of the associations between the EHP-30 domain ‘emotional well-being’ and a dimension of patient-centred endometriosis care, were significant when compared to the Bonferroni corrected p-value (all p ≥ 0.010). The EHP-30 domain ‘social support’ proved to be significantly associated to the following three dimensions of patient-centered endometriosis care (in order of strength): ‘information, communication and integration of care’ (p < 0.001, Beta=0.436), ‘coordination and integration of care’ (p = 0.001, Beta=0.307), and ‘emotional support and alleviation of fear and anxiety’ (p = 0.002, Beta=0.259). Limitations, reasons for caution This cross-sectional studies identified associations rather than proving causality between experiencing less patient-centeredness of care and having lower quality of life. Nevertheless, it is very tangible that some causality exists, either directly or indirectly (e.g. through empowerment) and that by improving patient-centeredness, quality of life might be improved as well. Wider implications of the findings Improving the patient-centeredness of endometriosis care was already considered an important goal, but even more so given its association with women’s quality of life, which is increasingly considered the ultimate measure of health care quality. Trial registration number not applicable
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