A M F Schreurs

Bio: A M F Schreurs is an academic researcher from VU University Amsterdam. The author has contributed to research in topics: Endometriosis & Quality of life (healthcare). The author has an hindex of 2, co-authored 6 publications receiving 7 citations.

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

Abstract: 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 INTERESTS: 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.

Continuous oral contraceptives versus long-term pituitary desensitization prior to IVF/ICSI in moderate to severe endometriosis: study protocol of a non-inferiority randomized controlled trial.

Abstract: STUDY QUESTIONS: The primary objective is to investigate if continuous use of oral contraceptives is non-inferior compared to long-term pituitary desensitization with a GnRH agonist prior to IVF/ICSI in patients with moderate to severe endometriosis with regard to treatment efficacy. Secondary objectives concern treatment safety and cost-effectiveness. WHAT IS KNOWN ALREADY: Long-term pituitary desensitization with a GnRH agonist for 3-6 months prior to IVF/ICSI improves clinical pregnancy rates in women suffering from endometriosis. However, discussion about this treatment strategy exists because of its uncomfortable side effects. Alternatively, IVF/ICSI pre-treatment with continuously administered oral contraceptives may offer fewer side-effects and lower (in)direct costs, as well as encouraging IVF outcomes in women with endometriosis. To date, these two different IVF/ICSI pre-treatment strategies in women with endometriosis have not been directly compared. STUDY DESIGN SIZE DURATION: An open-label, parallel two-arm randomized controlled multicenter trial is planned, including patients with moderate to severe endometriosis. To demonstrate an absolute difference of 13% (delta of 10% with non-inferiority margin of 3%) with a power of 80% 137 patients per group are sufficient. Taking into account a withdrawal of patients of 10% and a cancelation rate of embryo transfer after ovarian pick up of 10% (for instance due to fertilization failure), the sample size calculation is rounded off to 165 patients per group; 330 patients in total will be included. After informed consent, eligible patients will be randomly allocated to the intervention or reference group by using web based block randomization stratified per centre. Study inclusion is expected to be complete in 3-5 years. PARTICIPANTS/MATERIALS SETTING METHODS: The research population consists of patients with moderate to severe endometriosis (ASRM III/IV) who are scheduled for their first, second or third IVF/ICSI treatment attempt. Women aged over 41 years, younger than 18 years, with a known contraindication for the use of oral contraceptives and/or GnRH agonists or with severe male factor infertility will be excluded from participation. After informed consent patients are allocated to the intervention group (one-phase oral contraceptive continuously during three subsequent months) or the reference group (three Leuprorelin 3.75 mg i.m./s.c. depot injections during three subsequent months). Tibolon 2.5 mg can be given daily as add-back therapy in the reference group. After 3 months of pre-treatment the IVF/ICSI stimulation phase will be started. The primary outcome is live birth rate after fresh embryo transfer. Secondary outcomes are cumulative live birth rate after one IVF/ICSI treatment cycle (including fresh and frozen embryo transfers up to 15 months after randomization), ongoing pregnancy rate and time to pregnancy. In addition, treatment outcome parameters, adverse events, side-effects during the first 3 months, complications, recurrence of endometriosis (complaints), quality of life, patient preferences, safety and costs effectiveness will be reported. Measurements will be performed at baseline and at 3, 6, 9, 12 and 15 months after randomization. STUDY FUNDING/COMPETING INTERESTs: All authors have no conflict of interest related to this manuscript. The department of reproductive medicine of the Amsterdam UMC location VUmc has received several research and educational grants from Guerbet, Merck and Ferring not related to the submitted work. TRIAL REGISTRATION NUMBER: The trial is registered as the COPIE trial (Continuous use of Oral contraceptives as an alternative for long-term Pituitary desensitization with a GnRH agonist prior to IVF/ICSI in Endometriosis patients) in the Dutch Trial Register (Ref. No. NTR6357, http://www.trialregister.nl). TRIAL REGISTRATION DATE: 16 March 2017. DATE OF FIRST PATIENT’S ENROLMENT: Enrollment is planned for November 2018.

The impact of the COVID-19 pandemic on infertility patients and endometriosis patients in the Netherlands.

Abstract: Research question How do infertility patients, endometriosis patients and health-care providers rate virtual care as an alternative to physical consultations during the first lockdown of the coronavirus disease 2019 (COVID-19) pandemic in the Netherlands, and how does this influence quality of life and quality of care? Design Infertility patients and endometriosis patients from a university hospital and members of national patient organizations, as well as healthcare providers in infertility and endometriosis care, were asked to participate between May and October 2020. The distributed online questionnaires consisted of an appraisal of virtual care and an assessment of fertility-related quality of life (FertiQol) and patient-centredness of endometriosis care (ENDOCARE). Results Questionnaires were returned by 330 infertility patients, 181 endometriosis patients and 101 healthcare providers. Of these, 75.9% of infertility patients, 64.8% of endometriosis patients and 80% of healthcare providers rated telephone consultations as a good alternative to physical consultations during the COVID-19-pandemic. Only 21.3%, 14.8% and 19.2% of the three groups rated telephone consultations as a good replacement for physical consultations in the future. A total of 76.6% and 35.9% of the infertility and endometriosis patients reported increased levels of stress during the pandemic. Infertility patients scored lower on the FertiQol, while the ENDOCARE results care seem comparable to the reference population. Conclusions Virtual care seems to be a good alternative for infertility and endometriosis patients in circumstances where physical consultations are not possible. Self-reported stress is especially high in infertility patients during the COVID-19-pandemic. Healthcare providers should aim to improve their patients' ability to cope.

A systematic review and secondary analysis of two studies identifying demographic and medical characteristics determining patient-centeredness in endometriosis care as experienced by patients.

Abstract: Study question What are the patient-specific determinants associated with patient-centered endometriosis care as measured by the ENDOCARE questionnaire (ECQ)? Summary answer 'Overall grade for endometriosis care', 'educational level', 'membership of a patient organization' and 'having seen other specialists for endometriosis complaints' are correlated with overall patient-centeredness scores (PCS). What is known already Patient-centeredness of endometriosis care can be evaluated using the validated ECQ. The ECQ leads to an overall PCS and separate PCS for 10 dimensions of endometriosis care. Previously, educational level and quality of life scores were found to be associated with ECQ results. Study design size duration First, a systematic literature review was performed (PROSPERO registration number: CRD42020169872). MEDLINE, Cochrane CENTRAL and EMBASE databases were searched from inception to May 2020 for studies in any language reporting on the results of the ECQ in patients with endometriosis. Two studies were identified. From the two studies, all original data were merged. In total, data from 546 patients were available for analysis. Second, univariate and multivariate regression analyses were performed to identify determinants for patient-centeredness of endometriosis care. Participants/materials setting methods The two included studies evaluated patient-centeredness in four endometriosis care centers in Belgium and the Netherlands. All participants had surgically proven endometriosis. Possible patient-specific determinants were selected from the demographic and medical questions from the first part of the ECQ. These determinants were evaluated using linear regression analysis and all possible determinants with a P > 0.2 in the univariate analysis were selected for stepwise multivariate analysis. Separate analyses were performed for overall PCS and each of the 10 dimensions. Main results and the role of chance The two included studies provided data from 546 patients. After adjustment for care center, multivariate analysis showed that a higher 'grade for endometriosis care' (B = 0.66), a 'lower educational level' (B = 0.50), 'being member of a patient organization' (B = 0.49) and 'having seen other specialists for endometriosis complaints' (B = 0.34) were independently associated with higher overall PCS (R 2 = 0.41). 'Grade for endometriosis care' was a determinant for all dimensions of endometriosis care. 'Having seen other specialists for endometriosis complaints' was positively associated with the care dimensions 'respect for patients' values, preferences and expressed needs', 'continuity and transition' and 'technical skills'. Members of a patient organization showed higher scores on the care dimensions 'emotional support and alleviation of fear and anxiety', 'continuity and transition' and 'endometriosis clinic staff'. Furthermore, we found that having a higher level of education is associated with lower scores in the care dimensions 'physical comfort', 'emotional support and alleviation of fear and anxiety' and 'involvement of significant other'. Limitations reasons for caution These results delineate the patient-specific determinants of patient-centered care as measured using the Dutch ECQ. Whether results are generalizable to other countries should be investigated in an international study. This requires the ECQ to be validated in other languages first. Wider implications of the findings The aforementioned determinants of patient-centered care are of value for studies benchmarking clinics for their patient-centeredness. In addition, they help clinicians to determine how to tailor their care to individual patients. At every visit, patients could be asked to grade the endometriosis care (on a scale of 0-10) to easily investigate patient-centeredness. When there is more time, women with endometriosis should be asked to complete the entire ECQ to investigate patient-centeredness in depth. Study funding/competing interests The department of reproductive medicine (involving C.B.L. and V.M.) of the Amsterdam UMC, Vrije Universiteit Amsterdam has received several research and educational grants from Guerbet, Merck and Ferring. The authors have no conflict of interest related to this manuscript.

Severe psychological impact and impaired quality of life after a spontaneous haemoperitoneum in pregnancy in women with endometriosis and their partners.

Abstract: Background Spontaneous Haemoperitoneum in Pregnancy (SHiP) is a rare, but life-threatening complication of pregnancy that occurs predominantly in the third trimester of pregnancy and is associated with adverse pregnancy outcomes. Recently the largest case series in literature was published describing 11 Dutch cases of SHiP in women with endometriosis. Purpose To investigate experiences, psychological impact, and quality of life after SHiP. Methods A mixed-methods study was performed in women with a history of SHiP and their partners, including all known cases in the Netherlands between 2007 to 2015. Semi-structured in-depth interviews were organized between 2016 and 2017 and analysed thematically with a framework approach. Participants were asked to complete questionnaires investigating the impact of the event (Impact of Event Scale) and Quality of Life (RAND-36). Results Out of a total of 11 known cases, 7 women agreed for be individually interviewed. From these, all women described a freeze response at the moment of SHiP, combined with either an anxious reaction or a survival mode mind-set. All women received psychological help after SHiP. Still, the feeling of not being heard by the medical staff was present in all women. Other themes such as postpartum period, bonding with their child, effect on daily life, reviving the event, and future pregnancies were also identified in the interviews. In regard to their partners, 3 were interviewed, hence no saturation was achieved. Finally, the questionnaires showed lower Quality of Life and an impact score of ≥ 8/10. Conclusion SHiP had a profound impact on women and their partners. Dedicated psychological help should be offered to all women after experiencing SHiP.

The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres (vol 27, pg 1292, 2012)

Abstract: BACKGROUND This study aimed to calculate costs and health-related quality of life of women with endometriosis-associated symptoms treated in referral centres. METHODS A prospective, multi-centre, questionnaire-based survey measured costs and quality of life in ambulatory care and in 12 tertiary care centres in 10 countries. The study enrolled women with a diagnosis of endometriosis and with at least one centre-specific contact related to endometriosis-associated symptoms in 2008. The main outcome measures were health care costs, costs of productivity loss, total costs and quality-adjusted life years. Predictors of costs were identified using regression analysis. RESULTS Data analysis of 909 women demonstrated that the average annual total cost per woman was €9579 (95% confidence interval €8559-€10 599). Costs of productivity loss of €6298 per woman were double the health care costs of €3113 per woman. Health care costs were mainly due to surgery (29%), monitoring tests (19%) and hospitalization (18%) and physician visits (16%). Endometriosis-associated symptoms generated 0.809 quality-adjusted life years per woman. Decreased quality of life was the most important predictor of direct health care and total costs. Costs were greater with increasing severity of endometriosis, presence of pelvic pain, presence of infertility and a higher number of years since diagnosis. CONCLUSIONS Our study invited women to report resource use based on endometriosis-associated symptoms only, rather than drawing on a control population of women without endometriosis. Our study showed that the economic burden associated with endometriosis treated in referral centres is high and is similar to other chronic diseases (diabetes, Crohn's disease, rheumatoid arthritis). It arises predominantly from productivity loss, and is predicted by decreased quality of life.

Women with combined adenomyosis and endometriosis on MRI have worse IVF/ICSI outcomes compared to adenomyosis and endometriosis alone: A matched retrospective cohort study.

Abstract: To assess the effect of adenomyosis, endometriosis and combined adenomyosis and endometriosis, diagnosed on MRI, on IVF/ICSI outcomes versus male subfertility controls.This single-centre matched retrospective cohort study was carried out at Catharina Hospital in Eindhoven, The Netherlands. The study group consisted of infertile women undergoing their first, fresh embryo transfer during IVF/ICSI, with adenomyosis only (N = 36), endometriosis only (N = 61), and combined adenomyosis and endometriosis (N = 93) based on MRI. The control group consisted of IVF/ICSI patients undergoing treatment due to male subfertility (N = 889). 1:2 case-control matching based on age during IVF/ICSI, parity and number of embryos transferred was performed. Odds ratios were calculated for biochemical pregnancy, ongoing pregnancy and live birth rate versus matched male subfertility controls, and were corrected for embryo quality.Only the combined adenomyosis and endometriosis group showed a significantly reduced OR for biochemical pregnancy (p = 0.004, OR 0.453 (95% CI :(0.284-0.791)), ongoing pregnancy (p = 0.001, OR 0.302 (95% CI: (0.167-0.608)) and live birth (p = 0.001, OR 0.309 (95% CI: (0.168-0.644)) compared to matched male subfertility controls.The lower (ongoing) pregnancy and live birth rates in the combined adenomyosis and endometriosis women can be attributed to more severe disease in these women, ultimately resulting in increased chances for failed implantation and miscarriage. This highlights the importance of screening for adenomyosis in endometriosis patients, and identifies these women target for additional (hormonal) treatment prior to IVF/ICSI.

The impact of the COVID-19 pandemic on infertility patients and endometriosis patients in the Netherlands.

Abstract: Research question How do infertility patients, endometriosis patients and health-care providers rate virtual care as an alternative to physical consultations during the first lockdown of the coronavirus disease 2019 (COVID-19) pandemic in the Netherlands, and how does this influence quality of life and quality of care? Design Infertility patients and endometriosis patients from a university hospital and members of national patient organizations, as well as healthcare providers in infertility and endometriosis care, were asked to participate between May and October 2020. The distributed online questionnaires consisted of an appraisal of virtual care and an assessment of fertility-related quality of life (FertiQol) and patient-centredness of endometriosis care (ENDOCARE). Results Questionnaires were returned by 330 infertility patients, 181 endometriosis patients and 101 healthcare providers. Of these, 75.9% of infertility patients, 64.8% of endometriosis patients and 80% of healthcare providers rated telephone consultations as a good alternative to physical consultations during the COVID-19-pandemic. Only 21.3%, 14.8% and 19.2% of the three groups rated telephone consultations as a good replacement for physical consultations in the future. A total of 76.6% and 35.9% of the infertility and endometriosis patients reported increased levels of stress during the pandemic. Infertility patients scored lower on the FertiQol, while the ENDOCARE results care seem comparable to the reference population. Conclusions Virtual care seems to be a good alternative for infertility and endometriosis patients in circumstances where physical consultations are not possible. Self-reported stress is especially high in infertility patients during the COVID-19-pandemic. Healthcare providers should aim to improve their patients' ability to cope.

A systematic review and secondary analysis of two studies identifying demographic and medical characteristics determining patient-centeredness in endometriosis care as experienced by patients.

Abstract: Study question What are the patient-specific determinants associated with patient-centered endometriosis care as measured by the ENDOCARE questionnaire (ECQ)? Summary answer 'Overall grade for endometriosis care', 'educational level', 'membership of a patient organization' and 'having seen other specialists for endometriosis complaints' are correlated with overall patient-centeredness scores (PCS). What is known already Patient-centeredness of endometriosis care can be evaluated using the validated ECQ. The ECQ leads to an overall PCS and separate PCS for 10 dimensions of endometriosis care. Previously, educational level and quality of life scores were found to be associated with ECQ results. Study design size duration First, a systematic literature review was performed (PROSPERO registration number: CRD42020169872). MEDLINE, Cochrane CENTRAL and EMBASE databases were searched from inception to May 2020 for studies in any language reporting on the results of the ECQ in patients with endometriosis. Two studies were identified. From the two studies, all original data were merged. In total, data from 546 patients were available for analysis. Second, univariate and multivariate regression analyses were performed to identify determinants for patient-centeredness of endometriosis care. Participants/materials setting methods The two included studies evaluated patient-centeredness in four endometriosis care centers in Belgium and the Netherlands. All participants had surgically proven endometriosis. Possible patient-specific determinants were selected from the demographic and medical questions from the first part of the ECQ. These determinants were evaluated using linear regression analysis and all possible determinants with a P > 0.2 in the univariate analysis were selected for stepwise multivariate analysis. Separate analyses were performed for overall PCS and each of the 10 dimensions. Main results and the role of chance The two included studies provided data from 546 patients. After adjustment for care center, multivariate analysis showed that a higher 'grade for endometriosis care' (B = 0.66), a 'lower educational level' (B = 0.50), 'being member of a patient organization' (B = 0.49) and 'having seen other specialists for endometriosis complaints' (B = 0.34) were independently associated with higher overall PCS (R 2 = 0.41). 'Grade for endometriosis care' was a determinant for all dimensions of endometriosis care. 'Having seen other specialists for endometriosis complaints' was positively associated with the care dimensions 'respect for patients' values, preferences and expressed needs', 'continuity and transition' and 'technical skills'. Members of a patient organization showed higher scores on the care dimensions 'emotional support and alleviation of fear and anxiety', 'continuity and transition' and 'endometriosis clinic staff'. Furthermore, we found that having a higher level of education is associated with lower scores in the care dimensions 'physical comfort', 'emotional support and alleviation of fear and anxiety' and 'involvement of significant other'. Limitations reasons for caution These results delineate the patient-specific determinants of patient-centered care as measured using the Dutch ECQ. Whether results are generalizable to other countries should be investigated in an international study. This requires the ECQ to be validated in other languages first. Wider implications of the findings The aforementioned determinants of patient-centered care are of value for studies benchmarking clinics for their patient-centeredness. In addition, they help clinicians to determine how to tailor their care to individual patients. At every visit, patients could be asked to grade the endometriosis care (on a scale of 0-10) to easily investigate patient-centeredness. When there is more time, women with endometriosis should be asked to complete the entire ECQ to investigate patient-centeredness in depth. Study funding/competing interests The department of reproductive medicine (involving C.B.L. and V.M.) of the Amsterdam UMC, Vrije Universiteit Amsterdam has received several research and educational grants from Guerbet, Merck and Ferring. The authors have no conflict of interest related to this manuscript.

Endometriosis and COVID-19: A Systematic Review and Meta-Analysis

Abstract: Endometriosis is defined as ectopic endometrial tissues dispersed outside the endometrium. This can cause disruption in hormonal and immunological processes, which may increase susceptibility to SARS-CoV-2 infection. Worsening of endometriosis symptoms may occur as a result of this infection. The aim of our review was to estimate the pooled prevalence of SARS-CoV-2 infection and the health impacts of the COVID-19 pandemic in endometriosis patients. We conducted a systematic review and meta-analysis. MEDLINE, Science Direct, Scopus, and Google Scholar databases were searched, using the keywords: (endometriosis) AND (COVID-19 OR SARS-CoV-2). Forest plots and pooled estimates were created using the Open Meta Analyst software. After screening 474 articles, 19 studies met the eligibility criteria for the systematic review, and 15 studies were included in the meta-analyses. A total of 17,799 patients were analyzed. The pooled prevalence of SARS-CoV-2 infection in endometriosis patients was 7.5%. Pooled estimates for the health impacts were 47.2% for decreased access to medical care, 49.3% increase in dysmenorrhea, 75% increase in anxiety, 59.4% increase in depression, and 68.9% increase in fatigue. Endometriosis patients were undeniably impacted by the COVID-19 pandemic, which caused the worsening of symptoms such as dysmenorrhea, pelvic pain, anxiety, depression, and fatigue.