The experiences of women with breast cancer who undergo fertility preservation

STUDY QUESTION: How do women, who have just been diagnosed with breast cancer, experience oocyte or embryo banking? SUMMARY ANSWER: Fertility preservation was a challenging yet welcome way to take action when confronted with breast cancer. WHAT IS KNOWN ALREADY: Fertility preservation for women with breast cancer is a way to safeguard future chances of having children. Women who have just been diagnosed with breast cancer report stress, as do women who have to undergo IVF treatment. How women experience the collision of these two stressfull events, has not yet been studied. STUDY DESIGN, SIZE, DURATION: We performed a multicenter qualitative study with a phenomenological approach including 21 women between March and July 2014. Women were recruited from two university-based fertility clinics. PARTICIPANTS/MATERIALS, SETTING, METHODS: Women with breast cancer who banked oocytes or embryos 1-15 months before study participation were eligible. We conducted in-depth, face-to-face interviews with 21 women, which was sufficient to reach data saturation. MAIN RESULTS AND THE ROLE OF CHANCE: The 21 women interviewed had a mean age of 32 years. Analysis of the 21 interviews revealed three main experiences: The burden of fertility preservation, the new identity of a fertility patient and coping with breast cancer through fertility preservation. LIMITATIONS, REASONS FOR CAUTION: Interviewing women after, rather than during, fertility preservation might have induced recall bias. Translation of quotes was not carried out by a certified translator. WIDER IMPLICATIONS OF THE FINDINGS: The insights gained from this study of the experiences of women undergoing fertility preservation while being newly diagnosed with breast cancer could be used as a starting point for adapting the routine psychosocial care provided by fertility clinic staff. Future studies are necessary to investigate whether adapting routine psychosocial care improves women's wellbeing

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

STUDY QUESTION: What is the acceptability of using stem cell-based fertility treatments (SCFT) for different indications according to gynaecologists and the general public? SUMMARY ANSWER: The majority of gynaecologists and the general public accept SCFT for the indications female or male infertility in young heterosexual couples, and female infertility in single women and same-sex couples. WHAT IS KNOWN ALREADY: SCFT could result in genetic parenthood for intended parents with indications that cannot be treated using currently available methods, such as being in a same-sex relationship or female post-menopausal age. It is unclear whether the acceptability of SCFT differs between indications for treatment and whether gynaecologists and the general public differ in their assessments. STUDY DESIGN SIZE, DURATION: In November 2015, a cross-sectional survey was disseminated among 179 gynaecologists and a panel of 1250 respondents comprising a representative sample of the Dutch general public. PARTICIPANTS/MATERIALS, SETTING, METHODS: The potential indications for future SCFT to achieve genetic parenthood were identified by literature review. A questionnaire was developed, reviewed by experts from different disciplines and tested among the general public. The questionnaire asked whether treating eight groups of intended parents with SCFT was acceptable or not. Regression analysis examined whether demographic characteristics influenced choices and whether the general public and gynaecologists differed in opinion. MAIN RESULTS AND THE ROLE OF CHANCE: A total of 82 (46%) gynaecologists and 772 (62%) members of the general public completed the survey. The acceptability of using SCFT varied according to both gynaecologists and the general public between the eight groups of intended parents (P <0.001). The majority of the Dutch general public accepts SCFT for six out of eight possible indications, namely female infertility in young heterosexual couples (94%), male infertility in young heterosexual couples (94%), unexplained infertility in young heterosexual couples (83%), female infertility in single women (69%), lesbian couples (68%) and gay couples (62%). The majority of gynaecologists also found treating these groups acceptable, except for the indication of unexplained infertility, which was only accepted by a minority of gynaecologists (43%). A minority of both the general public and gynaecologists accepted SCFT for fertile women who want a child that is genetically only her own (27 and 6%, respectively) and for female infertility in heterosexual couples in which the woman is over 50 years of age (17% and 26%, respectively). Attaching low importance to religion, having progressive political preferences, not having a university degree, having experienced infertility, being a woman, being older and not being of European ethnicity were positively associated with considering using SCFT acceptable for one or multiple indications. LARGE SCALE DATA: N/A. LIMITATIONS REASONS FOR CAUTION: The generalizability of our findings to future decades or other countries might be limited as opinions about novel technologies change over time and might vary across cultures. Support among gynaecologists and the general public is interesting but not proof of ethical acceptability. WIDER IMPLICATIONS OF THE FINDINGS: Once proven safe and effective, fear of limited acceptability by the general public is unwarranted, and thus should not stop gynaecologists from offering SCFT to single infertile women and same-sex couples in addition to young infertile heterosexual couple

Broad support for regulating the clinical implementation of future reproductive techniques

Do gynaecologists, infertile patients and the general public, consider that regulation of the clinical implementation of stem cell-based fertility treatments is required? There is broad support from gynaecologists, patients and the general public for regulating the clinical implementation of future stem cell-based fertility treatments. There is debate on the need to regulate the clinical implementation of novel techniques. Regulation may hinder their swift adoption and delay benefits for patients, but may prevent the implementation of ineffective or harmful techniques. Stem cell-based fertility treatments, which involve creating oocytes or spermatozoa by manipulating stem cells, are likely to be implemented in clinical practice in the near future and will probably impact future generations as well as the current one. A cross-sectional survey was conducted among gynaecologists working in fertility clinics (n = 179), patients with severe infertility (n = 348) and a representative sample of the general public (n = 1250). The questionnaire was disseminated in the Netherlands in the winter of 2015-2016. The newly developed questionnaire was reviewed by experts and tested among the general public. The questionnaire assessed whether participants wanted each of nine potential negative consequences of the clinical implementation of stem cell-based fertility treatments to be regulated. In addition, the importance of all negative and positive potential consequences, the appropriate regulatory body and its need to consult with advisors from various backgrounds was questioned. In total, 958 respondents completed the questionnaire (response rate: 54%). A large majority of each participant group (> 85%) wanted regulation, for at least one potential negative consequence of the clinical implementation of stem cell-based fertility treatments. The majority of all participant groups wanted regulation for serious health risks for intended parents, serious health risks for children and the disposal of human embryos. Regulation for out-of-pocket costs and the burden of treatment received little support. The majority of gynaecologists and the general public, but not the patients, requested regulation for the risk of minor congenital abnormalities, the success rates and the naturalness of treatments. Nevertheless, the majority of patients did consider the former two potential negative consequences important. The majority of all groups preferred a national bioethics committee as the regulatory body. This committee should consult with advisors from various backgrounds and should consider the broader context of potential consequences of the stem cell-based fertility treatments. This empirical study focuses on only three stakeholder groups. This study reports on the perspective of the majority and this is not per definition the morally right perspective. The transferability of our findings to other cultures and other techniques remains unclear. A national bioethics committee, consulting with advisors from various backgrounds, should regulate the clinical implementation of future stem cell-based fertility treatments. Whether this broad support for regulation applies to novel techniques from other fields of medicine should be examined. The Young Academy of the Royal Netherlands Academy of Arts and Sciences. None of the authors has any conflict of interest to declare. Not applicabl

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

What reproductive choices do women make after they have cryopreserved oocytes for medical reasons? 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. 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. This follow-up study included a cohort of 85 women who cryopreserved their oocytes for medical reasons between 2009 and 2012. 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. 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. 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. 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. This study was not externally funded. There are no conflicts of interest to declar

Great expectations of IVF patients: the role of gender, dispositional optimism and shared IVF prognoses

STUDY QUESTION Which success rates do female and male IVF patients expect, what determines their expectations and do patients reconsider their expectations after receiving a personal IVF prognosis at the expense of anxious reactions? SUMMARY ANSWER Female and male IVF patients have unrealistic high expectations which are positively associated with their dispositional optimism, and which are only reconsidered by patients receiving a less than average IVF prognosis, which leads to more anxious reactions in females. WHAT IS KNOWN ALREADY Female patients undergoing IVF are known to have unrealistic expectations of the success of their own IVF cycle. The available evidence suggests women expect above average performance of their fertility clinic and (family) reproductive systems. The association of gender and personality trait dispositional optimism, with expectations of IVF success and the impact of providing couples with their IVF prognosis have not been studied previously. STUDY DESIGN, SIZE, DURATION A total of 148 partnered individuals participated in this prospective survey at two separate points in treatment: following oocyte aspiration (T1) and embryo transfer (T2) (2019–2020, participation rate = 85%). At the time of embryo transfer, gynaecologists provided couples with their IVF prognosis, calculated with the Adapted van Loendersloot model. Women and their male partners completed questionnaires independently and immediately following oocyte aspiration and embryo transfer. PARTICIPANTS/MATERIALS, SETTING, METHODS Dispositional optimism (‘LOT-R’ questionnaire) and expectations of IVF success (numerical rating scale) were assessed in eligible couples commencing a 2nd–6th IVF cycle on T1. Expectations of IVF success and anxiety (‘Spielberger State-Anxiety Inventory’) were (re)assessed on T2. The inter-partner correlation of expectations of IVF success was examined. Linear mixed models examined hypothesized determinants of expectations of IVF success (T1) and explored (determinants of) whether participants reconsidered their expectations after receiving their IVF prognosis (T1–T2) and whether couple’s IVF prognosis was associated with anxious reactions (T2). MAIN RESULTS AND THE ROLE OF CHANCE The mean of the IVF success rates expected by patients immediately after oocyte aspiration was 59.1% (±20.0), irrespective of gender (P = 0.077). Partners expectations of IVF success were moderately correlated (r = 0.483; P < 0.001). Expectations of IVF success were positively associated with the participant’s dispositional optimism (P < 0.001) but were not associated with their partner’s dispositional optimism, women’s age and their previous (un)successful IVF experiences. Gynaecologists gave couples their calculated IVF prognosis ranging from 4.8% to 69.2% (mean = 30.9%) at the time of embryo transfer. Gender did not influence whether participants reconsidered their expectations after receiving their prognosis. In contrast to the subgroup (n = 78), who received at least an average IVF prognosis and that did not reconsider their expectations of IVF success, the subgroup (n = 70) receiving a below average IVF prognosis lowered their expectations of IVF success (interaction effect: P < 0.001) from 55% to 46%. A below average IVF prognosis was associated with anxious reactions in women but not in men (interaction effect: P = 0.011). LIMITATIONS, REASONS FOR CAUTION The study design and sample size were more optimal for examining hypothesized determinants of patient’s expectations of IVF success than for studying the impact of sharing prognoses with patients. Whether (reconsidering) expectations influences IVF discontinuation rates and achieved live birth rates has yet to be followed-up. WIDER IMPLICATIONS OF THE FINDINGS Clinics are advised to offer patients the opportunity of receiving their IVF prognosis. Providing prognoses is in line with patient preferences and tempers the unrealistic high expectations of both partners in couples with a less than average prognosis. A sensitive communication style is indicated, as lower prognoses are associated with mild anxious reactions in women. STUDY FUNDING/COMPETING INTEREST(S) E.A.F.D. holds a postdoctoral fellowship of the Research Foundation—Flanders (12H9819N) and this study was funded by the Research Council of the KU Leuven (C14/18/106; project of J.V., K.P. and E.A.F.D.) and as an investigator sponsored study of K.P. and E.A.F.D. by Merck nv/sa Belgium, an affiliate of Merck KGaA, Darmstadt, Germany. The authors declare no conflict of interest related to this stud

Patient-centered early pregnancy care: a systematic review of quantitative and qualitative studies on the perspectives of women and their partners

BACKGROUND: Early pregnancy complications, defined as miscarriage, recurrent miscarriage or ectopic pregnancy, affect the physical and psychological well-being of intended parents. Research in this field so far has focused mainly on improving accuracy of diagnostic tests and safety and effectiveness of therapeutic management. An overview of aspects of care valued by women and/or their partners is missing. OBJECTIVE AND RATIONALE: This systematic review aims to provide an overview of aspects of care valued by women and/or their partners faced with early pregnancy complications and to identify potential targets for improvement in early pregnancy healthcare. SEARCH METHODS: We searched five electronic databases for empirical quantitative or qualitative studies on patients' perspectives of early pregnancy care in July 2017. We first identified aspects of early pregnancy care valued by women and/or their partners based on qualitative and quantitative data and organized these aspects of care according to the eight dimensions of patient-centered care. Second, we extracted the assessment of service quality from women and/or their partners on each of these aspects of care based on quantitative data. Third, we combined the findings on patients' values with the findings of service quality assessment to identify potential targets for improvement in five groups according to how likely these targets are to require improvement. OUTCOMES: The search yielded 6240 publications, of which 27 studies were eligible for inclusion in this review. All included studies focused on miscarriage or recurrent miscarriage care. We identified 24 valued aspects of care, which all covered the eight dimensions of patient-centered care. The most frequently reported valued aspect was 'being treated as an individual person experiencing a significant life event rather than a common condition'. Assessment of service quality from women and/or their partners was available for 13 of the 24 identified aspects of care. Quantitative studies all documented service quality as problematic for these 13 aspects of care. We thus identified 13 potential targets for improvement in the patient-centeredness of miscarriage and recurrent miscarriage care of which none were very likely, four were likely, six were unlikely and three were very unlikely, to require improvement. The four likely potential targets for improvement were 'Understandable information provision about the etiology of pregnancy', 'Staff discussing patients' distress', 'Informing patients on pregnancy loss in the presence of a friend or partner' and 'Staff performing follow-up phone calls to support their patients after a miscarriage'. WIDER IMPLICATIONS: It is important for clinicians to realize that women and their partners undergoing a miscarriage experience a significant live event and appreciate an individual approach. Future qualitative studies are needed to explore the identified potential targets for improvement of (recurrent) miscarriage care and to explore patients' perspectives in women suspected and treated for ectopic pregnanc

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

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

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

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 (R2 = 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