Publications by authors named "Willianne Nelen"

Objective: The objective of this study was to examine the hypothesis that experiences with patient-centered endometriosis care are related to the endometriosis-specific quality of life dimensions "emotional well-being" and "social support."

Design: A secondary regression analysis of two cross-sectional studies was conducted. Participants/Materials: In total, data from 300 women were eligible for analysis.

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Background: Assisted reproductive technologies (ARTs) are considered to be physically and mentally stressful. During their treatment trajectory, couples express high information and communication needs. They appreciate using the internet to obtain fertility-related information.

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Background: Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finish treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment.

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Background: An important-and often missing-element of person-centred care is the inclusion of individual patients' values and preferences. This is challenging but especially important for high-burden fertility treatments. We describe the development of a clinical tool that aims to facilitate the delivery of person-centred fertility care by giving insight into the patients' values and preferences.

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Background: Providing patient-centered fertility care is known to improve quality of life and can reduce anxiety and depression. In a previous study, we established the need for a web-based app providing personalized information and interactive functionalities among couples undergoing intracytoplasmic sperm injection with surgically retrieved sperm.

Objective: This study aimed to design, develop, and qualitatively evaluate a multifaceted web-based app for infertile couples undergoing intracytoplasmic sperm injection with surgically retrieved sperm during their treatment trajectory.

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Objectives: Endometriosis is characterized by a long interval between onset of symptoms and diagnosis. Detailed information about the patients' perspective on the diagnostic delay of endometriosis is scarce. The aim of this study was to identify strengths and weaknesses in the diagnostic process of endometriosis from the patients' perspective.

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Semen analysis is characterized by high levels of intra- and inter-laboratory variability, due to a low level of standardization, high subjectivity of the assessments, and problems with automated procedures. To improve consistency of laboratory results, quality control and training of technicians are important requisites. The goals of this study are to evaluate the results of an external quality control (EQC) program and standardized training by ESHRE Basic Semen Analysis Courses (BSAC) on the variability in manual assessments of semen parameters.

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Objective: Infertile couples consider patient information a very important dimension of patient-centred care. Although testicular sperm extraction (TESE) followed by intracytoplasmic sperm injection (ICSI) has long been offered to infertile couples, little is known about couples' informational needs. The aim of this study was to identify the informational needs of couples undergoing TESE and ICSI, including information content and the channels providing the information as a first step to improve patient-centred care.

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Purpose: Oncofertility focuses on providing fertility and endocrine-sparing options to patients who undergo life-preserving but gonadotoxic cancer treatment. The resources needed to meet patient demand often are fragmented along disciplinary lines. We quantify assets and gaps in oncofertility care on a global scale.

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Purpose: In the accompanying article, "Survey of Fertility Preservation Options Available to Patients With Cancer Around the Globe," we showed that specific fertility preservation services may not be offered at various sites around the world because of cultural and legal barriers. We assessed global and regional experiences as well as the legal status of third-party reproduction and adoption to serve as a comprehensive international data set and resource for groups that wish to begin oncofertility interventions.

Methods: We provide data on the legalities of third-party assisted reproductive technologies and other family-building options in the 28 oncofertility-practicing countries surveyed.

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Research Question: Which guideline-based key recommendations can be selected for high-quality female oncofertility care?

Design: The Delphi method was used to select a set of key recommendations for female oncofertility care. First, recommendations from (inter)national clinical practice guidelines were selected in four domains: risk communication, referral, counselling and decision-making. Thereafter, they were scored, per domain, on their importance for high-quality oncofertility care by a multidisciplinary, oncofertility expert panel, consisting of patients, referrers and counsellors, in two Delphi rounds.

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Background: Endometriosis is an invalidating gynaecological condition in women of reproductive age, and a frequent cause of infertility. Unfortunately, the condition is characterized by a long interval between onset of symptoms and diagnosis. GPs in the Netherlands are educated to provide basic gynaecological care and serve as gatekeepers for specialist medical care.

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Research Question: Can reflectance confocal microscopy (RCM) be used to determine follicle density in human ovarian cortex fragments that are intended for fertility restoration?

Design: RCM was used on living cortex tissue fragments derived from five bovine ovaries and 13 human ovaries. All tissue fragments were cryopreserved and thawed before RCM analysis. Follicle numbers and distribution were determined by RCM and histology.

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As cancer survival rates continue to increase, so does the relevance of starting or expanding a family after cancer, impacting quality of life. However, the option of fertility preservation is not always addressed by physicians before treatment. In the meanwhile, many patients look for health information online.

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Research Question: What is the methodological quality and content of internationally available clinical practice guidelines (CPGs) on fertility preservation (FP) care in adult women?

Design: Internationally available CPGs on FP care in adult women were identified after conducting an extensive literature search and consulting (inter)national key experts. The methodological quality of the CPGs was appraised by an (inter)national panel of experts using the Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument. The content of the best CPGs, scoring ≥60% for the domain 'Rigour of development' of the AGREE II instrument, was extracted and categorized according to their topic.

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Objective: To assess the live birth rate in women with WHO II anovulation and the proportion of women that need second or third line treatments if the initial therapy fails.

Study Design: In this multicenter cohort study we included couples with unfulfilled child wish who were referred to three fertility clinics in the Netherlands and selected women with a WHO II ovulation disorder as the only final infertility diagnosis (n = 468).

Results: The cumulative live birth rate of the total group was 82% (383/468).

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Introduction And Hypothesis: We aimed to estimate the level of de-implementation of preoperative routine urodynamics (UDS) before stress urinary incontinence (SUI) surgery in The Netherlands and to analyze facilitators and barriers. Routine UDS was performed by 37% of the medical specialists in 2010. We hypothesized that the recommendations from the recent Value of Urodynamics prior to Stress Incontinence Surgery (VUSIS) and Value of Urodynamic Evaluation (ValUE) studies would have been followed by a reduction of routine UDS.

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ESHRE guideline: recurrent pregnancy loss.

Hum Reprod Open

April 2018

Study Question: What is the recommended management of women with recurrent pregnancy loss (RPL) based on the best available evidence in the literature?

Summary Answer: The guideline development group formulated 77 recommendations answering 18 key questions on investigations and treatments for RPL, and on how care should be organized.

What Is Known Already: A previous guideline for the investigation and medical treatment of recurrent miscarriage was published in 2006 and is in need of an update.

Study Design Size Duration: The guideline was developed according to the structured methodology for development of ESHRE guidelines.

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Article Synopsis
  • A study examined the relationship between patient-centred endometriosis care (PCEC) and health-related quality of life (HRQOL) among 194 Dutch-speaking women who had laparoscopy for endometriosis.
  • Results showed overall HRQOL was rated at 29.3/100 and overall PCEC at 38.0/100, with significant links found between certain PCEC subscales (like 'continuity' and 'respect') and HRQOL factors, particularly 'social support' and 'emotional wellbeing'.
  • The study suggests that improving PCEC may enhance HRQOL, indicating that further large-scale research is necessary to explore these associations more deeply.
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The number of pediatric and young adult cancer survivors is increasing globally due to earlier diagnostics and expansion of targeted chemo- and biological-based therapeutics. As a consequence, cancer-related infertility and reproductive hormone loss is of increasing concern for both male and female survivors. We attempted to estimate the reproductive loss in oncofertility-practicing countries and to develop a global oncofertility index (OFI).

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Background: Approximately one-fifth of all subfertile couples seeking fertility treatment show clinically relevant levels of anxiety, depression, or distress. Psychological and educational interventions are frequently offered to subfertile couples, but their effectiveness, both in improving mental health and pregnancy rates, is unclear.

Objectives: To assess the effectiveness of psychological and educational interventions for subfertile couples on psychological and fertility treatment outcomes.

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Background: Patient involvement in scoping the guideline is emphasized, but published initiatives actively involving patients are generally limited to the writing and reviewing phase.

Objective: To assess patients' added value to the scoping phase of a multidisciplinary guideline on infertility.

Design: Qualitative interview study.

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Objective: To determine the relation of Anti-Müllerian hormone (AMH) with live birth after in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI) in women with (extremely) low ovarian reserve.

Study Design: This study was a retrospective cohort study in a Dutch tertiary fertility clinic. Between January 2009 and March 2012, AMH levels were measured in infertile women when ≥36 years of age or when showing clinical signs of diminished ovarian reserve, before they underwent IVF or ICSI treatment.

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Study Question: Is it feasible to evaluate a personalized e-therapy program (Internet based) for women during fertility treatment aimed to reduce the chance of having clinically relevant symptoms of anxiety and/or depression after unsuccessful assisted reproductive technology (ART) treatment within a randomized controlled trial (RCT)?

Study Answer: The evaluation of a personalized e-therapy program is feasible, reflected by good acceptability and integration within current guidelines, but adjustments to the e-therapy program and study design of the RCT have to be made to enhance demand, practicality and efficacy.

What Is Known Already: Internet-based interventions are promising in reducing psychological distress, especially when treatment is personalized to specific risk profiles of patients. However in fertility care, the beneficial effects of personalized e-therapy on psychological distress and its implementation in daily clinical care still have to be evaluated.

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