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

Abstract

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