How to reform western care payment systems according to physicians, policy makers, healthcare executives and researchers: a discrete choice experiment

Background: Many developed countries are reforming healthcare payment systems in order to limit costs and improve clinical outcomes. Knowledge on how different groups of professional stakeholders trade off the merits and downsides of healthcare payment systems is limited. Methods: Using a discrete choice experiment we asked a sample of physicians, policy makers, healthcare executives and researchers from Canada, Europe, Oceania, and the United States to choose between profiles of hypothetical outcomes on eleven healthcare performance objectives which may arise from a healthcare payment system reform. We used a Bayesian D-optimal design with partial profiles, which enables studying a large number of attributes, i.e. the eleven performance objectives, in the experiment. Results: Our findings suggest that (a) moving from current payment systems to a value-based system is supported by physicians, despite an income trade-off, if effectiveness and long term cost containment improve. (b) Physicians would gain in terms of overall objective fulfillment in Eastern Europe and the US, but not in Canada, Oceania and Western Europe. Finally, (c) such payment reform more closely aligns the overall fulfillment of objectives between stakeholders such as physicians versus healthcare executives. Conclusions: Although the findings should be interpreted with caution due to the potential selection effects of participants, it seems that the value driven nature of newly proposed and/or introduced care payment reforms is more closely aligned with what stakeholders favor in some health systems, but not in others. Future studies, including the use of random samples, should examine the contextual factors that explain such differences in values and buy-in. JEL classification: C90, C99, E61, I11, I18, O5

Good practice recommendations for information provision for those involved in reproductive donation(dagger)

© The Author(s) 2022. Published by Oxford University Press on behalf of European Society of Human Reproduction and Embryology. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact [email protected] question: What information and support should be offered to donors, intended parents and donor-conceived people, in general and in consideration of the availability of direct-to-consumer genetic testing and matching services? Summary answer: For donors, intended parents and donor-conceived offspring, recommendations are made that cover information needs and informed consent, psychosocial implications and disclosure. What is known already: Trends indicate that the use of donor-assisted conception is growing and guidance is needed to help these recipients/intended parents, the donors and offspring, navigate the rapidly changing environment in which donor-assisted conception takes place. Study design size duration: A working group (WG) collaborated on writing recommendations based, where available, on evidence collected from a literature search and expert opinion. Draft recommendations were published for stakeholder review and adapted where relevant based on the comments received. Participants/materials setting methods: Papers retrieved from PUBMED were included from 1 January 2014 up to 31 August 2020, focusing on studies published since direct-to-consumer genetic testing has become more widespread and accessible. The current paper is limited to reproductive donation performed in medically assisted reproduction (MAR) centres (and gamete banks): donation outside the medical context was not considered. Main results and the role of chance: In total, 32 recommendations were made for information provision and support to donors, 32 for intended parents and 27 for donor-conceived offspring requesting information/support. Limitations reasons for caution: The available evidence in the area of reproductive donation is limited and diverse with regards to the context and types of donation. General conclusions and recommendations are largely based on expert opinion and may need to be adapted in light of future research. Wider implications of the findings: These recommendations provide guidance to MAR centres and gamete banks on good practice in information provision and support but should also be considered by regulatory bodies and policymakers at a national and international level to guide regulatory and legislative efforts towards the protection of donors and donor-conceived offspring. Study funding/competing interests: The development of this good practice paper was funded by European Society of Human Reproduction and Embryology (ESHRE), covering expenses associated with the WG meetings, the literature searches and dissemination. The WG members did not receive any payment. The authors have no conflicts of interest to declare. Disclaimer: This document represents the views of ESHRE, which are the result of consensus between the relevant ESHRE stakeholders and where relevant based on the scientific evidence available at the time of preparation. The recommendations should be used for informational and educational purposes. They should not be interpreted as setting a standard of care, or be deemed inclusive of all proper methods of care nor exclusive of other methods of care reasonably directed to obtaining the same results. They do not replace the need for application of clinical judgement to each individual presentation, nor variations based on locality and facility type. †ESHRE pages content is not externally peer reviewed. The manuscript has been approved by the Executive Committee of ESHRE.info:eu-repo/semantics/publishedVersio

Bridging the gap between evidence based and patient-centred infertility and endometriosis care in Europe

Scientific summary Previously, quality management in the field of infertility and endometriosis care mainly focussed on only two out of the six dimensions of the quality of care defined by the Institute of Medicine, namely effectiveness and safety .The studies included in this PhD project represent important steps to bridge the gap between the quality dimension patient-centredness and evidence based medicine by examining six hypotheses in eleven studies. Every hypothesis was examined in at least two Western-European countries.Based on the results of the studies included in this PhD project, we can summarize the following statements regarding the quality dimension patient-centredness : (i) it is important, (ii) it can be described by ten dimensions, (iii) it can be reliably assessed, (iv) it can be a basis for benchmarking between clinics, (v) specific care aspects requiring improvement can be identified, and (vi) it can be integrated in a quality indicator set. Different stakeholder groups of reproductive medicine from different countries agree that patient-centred care is important The discrete choice experiments on infertility care (chapter 2) and the systematic Delphi-consensus-study on infertility and endometriosis care (chapter 11) complemented each other in ranking patient-centredness for importance among the other five quality dimensions. Patients and professionals, including gynaecologists, embryologists, counsellors and nurses/midwifes, agree that the patient-centredness of infertility and endometriosis care is important (chapters 2, 11). The only quality dimensions valued more than patient-centredness, bysome stakeholder groups, are safety and effectiveness (chapters 2, 11). Remarkably, patients and physicians are willing to trade-off a proportion of pregnancy rate per cycle for more patient-centred care (chapter 2). Infertility and endometriosis clinic staff should know that patients value the patient-centredness of care more than they do themselves (chapters 2, 11). Quality managers should monitor and improve thepatient-centredness of their clinic. International condition-specific concepts can clearly describe patient-centred infertility and endometriosis care Systematic reviews (chapters 1, 7), monolingual qualitative studies (chapter 3, 8) and multilingual qualitative studies (chapter 4, 8) were complementary for the development of concepts valid for Western-Europe. Patient-Centred Infertility Care (PCIC) and Patient-Centred Endometriosis Care (PCEC) are defined by ten similar dimensions, including human factors of care, such as emotional support , and system factors of care, like continuity and transition of care (chapters 1, 3, 4, 7, 8). All specific care aspects important to infertile and endometriosis patients can be fitted into these ten dimensional concepts (chapters 1, 3, 4, 7, 8). The concepts of PCIC and PCEC provide infertility and endometriosis clinic staff with insight into how to interact with patients in a patient-centred way. All ten dimensions of PCIC and PCEC should be watched over by quality managers of Western-European fertility and endometriosis clinics. The patient-centredness of infertility and endometriosis care can be internationally assessed in a valid and reliable way The included studies developed the following two reliable and internationally valid patient-centredness questionnaires: the Patient-Centred Infertility Care Questionnaire (E-PCIC-Q) and the ENDOCARE-questionnaire (ECQ; chapter 6, 8). The questionnaires assessed all ten dimensions of, respectively, PCIC and PCEC. Qualitative research proved a trustworthy alternative for assessing the patient-centredness of specific infertility and endometriosis care pathways not covered by these questionnaires (chapter 5). The ECQ proved valid and reliable for Western-Europe (chapters 8, 9, 10). European studies on the E-PCIC-Q are being performed, but the first intermediate analysis showed that both reliability and validity results for Belgium and the Netherlands were satisfactory (chapter 6).Western-European fertility and endometriosis clinics are advised to assess regularly the patient-centredness of their care with the E-PCIC-Q and ECQ. ´International benchmarking for the patient-centredness of infertility and endometriosis care is feasible´ Three international benchmarking studies reliably detected differences in the patient-centredness of two fertility clinics (chapter 6), two endometriosis clinics (chapter 9) and ten European countries providing endometriosis care to members of patient associations (chapter 10) with the E-PCIC-Q and the ECQ. The cultural differences within Western-Europe in the rankings of important care dimensions, and the differences between clinics /countries samples in the patient characteristics influencing patients assessments were taken into account by the E-PCIC-Q and the ECQ (chapter 6, 8, 9, 10). The overall patient-centredness of infertility and endometriosis care was similar across two European university clinics (chapters 6, 9). However, each clinic proved more patient-centred than the other with respect to specific and different dimensions of PCIC and PCEC (chapters 6, 9). AcrossWestern-Europe, Belgium, Denmark and Italy provided the most patient-centred endometriosis care (chapter 10) and are therefore likely to host clinics with excellent patient-centredness. Western-European fertility and endometriosis clinics are advised to use the reciprocally translated E-PCIC-Q and ECQ to reliably compare their patient-centredness with other clinics across Europe. Sound targets for patient-centred quality improvement projects can be identified Systematic reviews on the patients perspective on care (chapters 1, 7), qualitative research (chapter 5) and E-PCIC-Q and ECQ-assessments(chapters 6, 9, 10) all identified reliable targets for patient-centredquality improvement projects at, respectively, overall (chapters 1, 7),clinic (chapters 5, 6, 10) or national level (chapter 9). Frequently identified targets for improving the patient-centredness of infertility care are: informing patients on the emotional aspects of fertility problems and treatments (chapter 1, 6) and using different accommodations for infertile and pregnant patients (chapters 1, 5). Frequently identified targets for improving the patient-centredness of endometriosis care are: staff showing respect for patients by taking their health complaints seriously (chapter 7, 10) and surgically diagnosing endometriosis timely (chapter 7, 9). To identify clinic specific targets to improve the patient-centredness of their care Western-European infertility and endometriosis clinics are encouraged to use, respectively, the E-PCIC-Q and the ECQ. ´Patient-centredness can be integrated in a quality indicator set, integrating allquality dimensions, to be used for international benchmarking of reproductive medicine´ The included quality indicator set covering all six quality dimensions including patient-centredness, serves to provide a balanced judgement of quality of care (chapter 11). Nevertheless, more in-depth insight in all quality dimensions is required. For patient-centredness, this insight can be provided by the E-PCIC-Q and the ECQ. The patient-centred approach of involving patients in the development and selection of quality indicators was successful (chapter 11).Quality management of fertility and endometriosis clinics should monitor all sixquality dimensions, including patient-centredness. The mentioned six hypotheses will all benefit from further research. Furthermore, the included studies are inspirational for future research designed to improve the patient-centredness of care and to expand the patient-centred approach by involving patients in the management of quality dimensions like safety and effectiveness, and in the formulation of priorities for reproductive research.Table of contents List of abreviations 1 General introduction 5 Objectives of the research 19 Chapter 1: The patients’ perspective on infertility care: a systematic review 23 Chapter 2: Physicians underestimate the importance of patient-centredness to patients: a discrete choice experiment in infertility care 63 Chapter 3: Patient-centred infertility care: A qualitative study to listen to the patient’s voice 85 Chapter 4: Patients from across Europe have similar views on Patient Centred Care: an international multi-lingual qualitative study in infertility care 109 Chapter 5: Testicular biopsy before ART: the patients’ perspective on the quality of care 131 Chapter 6: Interim report: The European Patient Centred Infertility Care Questionnaire (E-PCIC-Q): a valid and reliable instrument to measure the patient-centredness of infertility care in Europe 155 Chapter 7: The patient-centredness of endometriosis care and targets for improvement: a systematic review 211 Chapter 8: The ENDOCARE questionnaire (ECQ): a valid and reliable instrument to measure the patient-centredness of endometriosis care in Europe 237 Chapter 9: The ENDOCARE questionnaire guides European endometriosis clinics to improve the patient-centredness of their care 275 Chapter 10: The international ENDOCARE questionnaire (ECQ) study evaluating the patient-centredness of specialist endometriosis care in ten European countries 299 Chapter 11: Quality indicators for all dimensions of infertility care quality: consensus between professionals and patients 329 General discussion 359 Scientific summary 385 Lay summary 391 Leken samenvatting 395 References 401 Curriculum Vitae 429 Bibliography 437 Acknowledgements 443nrpages: 450status: publishe

Detecting Endometriosis in Adolescents: Why Not Start from Self-Report Screening Questionnaires for Adult Women?

Endometriosis in adolescent girls is often diagnosed after a long delay. This diagnostic delay can be associated with more advanced stages of endometriosis and with a higher likelihood of fertility problems at a later age.status: publishe

The acceptability of stem cell-based fertility treatments for different indications

What is the acceptability of using stem cell-based fertility treatments (SCFT) for different indications according to gynaecologists and the general public?status: publishe

Reproductive choices and outcomes after freezing oocytes for medical reasons: a follow-up study

STUDY QUESTION: What reproductive choices do women make after they have cryopreserved oocytes for medical reasons? SUMMARY ANSWER: Women who had cryopreserved oocytes for medical reasons and tried to become pregnant, either attempted natural conception or resorted to assisted reproduction with fresh oocytes. WHAT IS KNOWN ALREADY: Women confronted with a risk of premature ovarian insufficiency, due to gonadotoxic therapy, ovarian surgery or genetic predisposition, have an indication to cryopreserve oocytes. Many of these women will retain ovarian function, thus will retain the possibility of natural conception. The added value of cryopreserved oocytes to reproductive outcomes is unknown as there is a lack of follow-up of women who have cryopreserved oocytes for medical reasons. STUDY DESIGN, SIZE AND DURATION: This follow-up study included a cohort of 85 women who cryopreserved their oocytes for medical reasons between 2009 and 2012. PARTICIPANTS/MATERIALS, SETTING AND METHODS: Medical data from women who cryopreserved their oocytes at the Centre for Reproductive Medicine in the Academic Medical Centre in Amsterdam were extracted and self-report questionnaires were disseminated. The collected data considered demographics, outcomes of ovarian stimulation, fertility-threatening treatments, menstrual cycle changes, pregnancy attempts and outcomes and intended plans for the cryopreserved oocytes. MAIN RESULTS AND THE ROLE OF CHANCE: A total of 68 women, followed up for an average 25.3 months, returned the questionnaire (response rate: 80%). None of the women had used her cryopreserved oocytes although 16 women had tried to conceive. Of these women, eight were trying to conceive naturally, five had conceived naturally within 2 months and three had conceived with assisted reproduction not requiring cryopreserved oocytes (two women with conventional IVF because of tubal pathology and endometriosis and one woman with IUI because of polycystic ovary syndrome). Three out of the eight pregnancies had resulted in live births, two resulted in miscarriages and three were ongoing. Most women (71%) intended to conceive with their cryopreserved oocytes as a last resource option. LIMITATIONS, REASONS FOR CAUTION: Transferability of our findings is challenged by the small sample but positively affected by our high response rate. As the time span between cryopreservation of oocytes and follow-up was short, follow-up of the cohort should be repeated in 2 years. WIDER IMPLICATIONS OF THE FINDINGS: After a mean follow-up of 2 years, none of the women with a medical reason to cryopreserve oocytes had used her oocytes. Women who were trying to conceive during follow-up were doing so without using their stored oocytes. It is unclear whether starting assisted reproduction while having cryopreserved oocytes is the most appropriate clinical decision. Our findings emphasize the relevance of taking the chances of natural conception into account in counselling women about cryopreservation of oocytes. STUDY FUNDING/COMPETING INTERESTS: This study was not externally funded. There are no conflicts of interest to declare.status: publishe

Ongoing pregnancy qualifies best as the primary outcome measure of choice in trials in reproductive medicine: an opinion paper

The most appropriate primary outcome measure for reproductive medicine has been discussed frequently. In 2003 the European Society for Human Reproduction and Embryology recommended that the outcome measure of assisted reproductive technology (ART) and non-ART should be singleton live birth. Although live birth is indeed the aim of clinical practice, and there is no discussion that it should be reported in infertility trials, we hereby provide arguments that plead for using ongoing pregnancy as the primary outcome in such trials. We feel that ongoing pregnancy best serves the many purposes of a primary outcome and best reflects the effectiveness of a treatment.status: publishe