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  • 1
    Online Resource
    Online Resource
    Informa UK Limited ; 2006
    In:  Human Fertility Vol. 9, No. 4 ( 2006-01), p. 209-216
    In: Human Fertility, Informa UK Limited, Vol. 9, No. 4 ( 2006-01), p. 209-216
    Type of Medium: Online Resource
    ISSN: 1464-7273 , 1742-8149
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2006
    detail.hit.zdb_id: 2145769-4
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  • 2
    In: Health Expectations, Wiley, Vol. 25, No. 3 ( 2022-06), p. 1081-1093
    Abstract: 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. Methods We developed the Tell me tool following the three principles of user‐centred design: (1) early and continual focus on users; (2) iterative design; (3) measurement of user behaviour. Accordingly, our methods consisted of three phases: (1) conducting semi‐structured interviews with 18 couples undergoing fertility treatment, followed by a consensus meeting with relevant stakeholders; (2) performing seven iterative improvement rounds; (3) testing the feasibility of the tool in 10 couples. Results The Tell me tool consists of a ranking assignment of 13 themes and two open‐ended questions. These themes relate to the couples' wellbeing and experience of the treatment, such as mental health and shared decision making. The open‐ended questions ask them to write down what matters most to them. The field test showed variation between the individual patients' answers. The tool proved to highlight what is important to the individual patient and gives insight into patients' personal contexts. Conclusions We developed a tool that gives insight into the values and preferences of the individual patient. The tool seems feasible for facilitating person‐centred fertility care. Patient or Public Contribution The tool was developed with a user‐centred design that strongly involved patients.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2006357-X
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  • 3
    In: Cancer Medicine, Wiley, Vol. 12, No. 3 ( 2023-02), p. 2691-2701
    Abstract: Clinical practice guidelines recommend to inform female cancer patients about their infertility risks due to cancer treatment. Unfortunately, it seems that guideline adherence is suboptimal. In order to improve quality of integrated female oncofertility care, a systematic assessment of current practice is necessary. Methods A multicenter cross‐sectional survey study in which a set of systematically developed quality indicators was processed, was conducted among female cancer patients (diagnosed in 2016/2017). These indicators represented all domains in oncofertility care; risk communication, referral, counseling, and decision‐making. Indicator scores were calculated, and determinants were assessed by multilevel multivariate analyses. Results One hundred twenty‐one out of 344 female cancer patients participated. Eight out of 11 indicators scored below 90% adherence. Of all patients, 72.7% was informed about their infertility, 51.2% was offered a referral, with 18.8% all aspects were discussed in counseling, and 35.5% received written and/or digital information. Patient's age, strength of wish to conceive, time before cancer treatment, and type of healthcare provider significantly influenced the scores of three indicators. Conclusions Current quality of female oncofertility care is far from optimal. Therefore, improvement is needed. To achieve this, improvement strategies that are tailored to the identified determinants and to guideline‐specific barriers should be developed.
    Type of Medium: Online Resource
    ISSN: 2045-7634 , 2045-7634
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2659751-2
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  • 4
    In: BMC Women's Health, Springer Science and Business Media LLC, Vol. 22, No. 1 ( 2022-12)
    Abstract: 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. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material with input of stakeholders. Methods A phenomenological qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4). Results Professionals indicated that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors reported unmet information needs. Women identified the following as most important information needs (a) fertility preservation options, (b) the risk of menopause or infertility, and (c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting breast cancer patients. Conclusions Fertility and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed and nationally implemented. This way, professionals in breast cancer care are provided with an information tool that helps them meet the information needs and preferences of their patients.
    Type of Medium: Online Resource
    ISSN: 1472-6874
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2050444-5
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  • 5
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 25 ( 2023-1-24), p. e38535-
    Abstract: 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. In a previous study, we developed myFertiCare, an eHealth tool providing personalized information and interactive functionalities for infertile couples in order to improve patient-centered care. The app has already been successful in qualitative evaluations of usability. Objective The aim of the current study is to quantitatively evaluate the implementation of myFertiCare by using the human, organizational, and technology–fit (HOT-fit) framework and to study the effects of using myFertiCare on couples’ knowledge about infertility, their experience of the burden of infertility, and their experience of patient-centered care. With these results, implementation can be further improved, and patient-centered care can be enhanced. Methods A quantitative study was performed based on the HOT-fit framework using validated questionnaires focusing on the human, organizational, and technology domains. Questions were added on the effect of using myFertiCare on couples’ knowledge about infertility and treatment. Questions regarding the burden of infertility, the burden of infertility treatment, and the experience of patient-centeredness were based on the main items of the validated fertility quality of life (FertiQoL) and Patient-Centredness Questionnaire–Infertility questionnaires, respectively. Also, nonusers of the app were included to explore motivations for not using the app and identify opportunities for improvement. Finally, user data were analyzed to provide insight into multiple variables concerning app use. Results In the human and technology domains, myFertiCare showed good system usability, high user satisfaction, and high information and interface quality. In the organizational domain, implementation was considered to be sufficient by both patients and staff. Use of the app increased knowledge about the treatment, improved coping with the treatment, and enhanced the experience of patient-centeredness. User data showed that women were the main app users and that use of the app gradually declined during the treatment trajectory. Conclusions A multi-faceted online app, myFertiCare, has been successfully evaluated quantitatively for implementation by using the HOT-fit framework. Use of the app increased knowledge about the treatment, improved coping with the treatment, and enhanced the experience of patient-centeredness. App use could be improved by creating more publicity. By providing myFertiCare, professionals in fertility care are supported in guiding patients through their treatment trajectory and in delivering patient-centered care.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2023
    detail.hit.zdb_id: 2028830-X
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  • 6
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 23, No. 8 ( 2021-8-3), p. e25389-
    Abstract: 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. Methods The web-based app was developed in three phases: (1) we established a patient-centered functional design, (2) developed the app in collaboration with medical and technical professionals, and (3) qualitatively evaluated the app among couples using a think-aloud method. Results The basis of the app is the couple’s visualized treatment trajectory. The app provides personalized and interactive functionalities; for example, customized information and communication options. During qualitative evaluation, myFertiCare was highly appreciated and received a median score of 8 out of 10. The main improvements made upon conclusion of the think-aloud sessions were related to faster login and easier app navigation. Conclusions A patient-centered web-based app aimed at guiding couples through their fertility treatment course was systematically designed, developed, and positively evaluated by patients and medical and technical professionals.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2028830-X
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  • 7
    In: Family Practice, Oxford University Press (OUP), Vol. 37, No. 1 ( 2020-02-19), p. 131-136
    Abstract: 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. Therefore, it is of great importance that they recognize signs and symptoms possibly caused by endometriosis to initiate adequate actions. Objective The main objective of this study was to identify barriers and facilitators to the timely diagnosis of endometriosis from the GPs’ perspective. Methods Semi-structured focus group discussions with GPs were organized throughout the Netherlands. The participants were encouraged to brainstorm about their perspective on daily practice regarding endometriosis and suggestions for interventions to enable early diagnosis and treatment. Analysis was based on grounded theory methodology. Results Forty-three GPs participated in six focus groups. Analysis of the transcripts revealed relevant determinants of practice in four main themes: professionals’ experience and competence, patient characteristics, guideline factors and professional collaboration. A lack of knowledge and awareness appeared to result in a low priority for establishing the diagnosis of endometriosis, especially in young women. Infertility, patient engagement and a recent serious case or training facilitated referral. Conclusion Several factors in daily primary health care contribute to the diagnostic delay in endometriosis. Future interventions to reduce this delay may be aimed at increasing awareness by means of education, incorporating the subject into national clinical guidelines and improvements in interdisciplinary collaboration.
    Type of Medium: Online Resource
    ISSN: 1460-2229
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 1484852-1
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  • 8
    In: Obstetrical & Gynecological Survey, Ovid Technologies (Wolters Kluwer Health), Vol. 76, No. 7 ( 2021-7), p. 408-410
    Abstract: (Abstracted from J Natl Cancer Inst 2021;113:699–709) Despite inconclusive evidence, concerns that assisted reproductive technology may be associated with increased risk of ovarian cancer remain. Significant increases in gonadotropin levels and disruption of ovarian epithelium have been proposed as mechanisms to explain this potential association.
    Type of Medium: Online Resource
    ISSN: 1533-9866 , 0029-7828
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2021
    detail.hit.zdb_id: 2043471-6
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  • 9
    In: JNCI: Journal of the National Cancer Institute, Oxford University Press (OUP), Vol. 113, No. 6 ( 2021-06-01), p. 699-709
    Abstract: Long-term effects of assisted reproductive technology (ART) on ovarian tumor risk are unknown. Methods This nationwide cohort study comprises 30 625 women who received ovarian stimulation for ART in 1983-2000 and 9988 subfertile women not treated with ART. Incident invasive and borderline ovarian tumors were ascertained through linkage with the Netherlands Cancer Registry and the Dutch Pathology Registry until July 2018. Ovarian tumor risk in ART-treated women was compared with risks in the general population and the subfertile non-ART group. Statistical tests were 2-sided. Results After a median follow-up of 24 years, 158 invasive and 100 borderline ovarian tumors were observed. Ovarian cancer risk in the ART group was increased compared with the general population (standardized incidence ratio [SIR] = 1.43, 95% confidence interval [CI] = 1.18 to 1.71) but not when compared with the non-ART group (age- and parity-adjusted hazard ratio [HR] = 1.02, 95% CI = 0.70 to 1.50). Risk decreased with higher parity and with a larger number of successful ART cycles (resulting in childbirth, Ptrend = .001) but was not associated with the number of unsuccessful ART cycles. Borderline ovarian tumor risk was increased in ART-treated women compared with the general population (SIR = 2.20, 95% CI = 1.66 to 2.86) and with non-ART women (HR = 1.84, 95% CI = 1.08 to 3.14). Risk did not increase with more ART cycles or longer follow-up time. Conclusions Increased ovarian cancer risk in ART-treated women compared with the general population is likely explained by nulliparity rather than ART treatment. The increased risk of borderline ovarian tumors after ART must be interpreted with caution because no dose-response relationship was observed.
    Type of Medium: Online Resource
    ISSN: 0027-8874 , 1460-2105
    RVK:
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2992-0
    detail.hit.zdb_id: 1465951-7
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  • 10
    In: Diagnosis, Walter de Gruyter GmbH, Vol. 8, No. 3 ( 2021-08-26), p. 333-339
    Abstract: 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. Methods Qualitative study with semi-structured focus groups. Participants were women between 18 and 45 years old with a recently confirmed diagnosis. The focus groups were audio recorded and fully transcribed. Grounded theory methodology was applied for data analysis. Results Six focus groups were organized, in which 23 women participated. Mean time from start of symptoms to diagnosis was 8.5 years. Dominant themes were knowledge about normal menstruation and endometriosis, being believed and acknowledged by medical staff, and collaboration between health care providers including fast referral to a gynaecologist. Barriers to a timely referral and diagnosis were young age, normalization of symptoms and a lack of awareness in general practitioners. Facilitating factors included adequate knowledge and skills of the general practitioner, a desire for pregnancy and persisting in a request for specialist consultation by the patient. Conclusions The diagnostic process of endometriosis is hampered by delayed consultation, inadequate appraisal of symptoms by general practitioners and the interaction between patients and medical professionals. Efforts should be made to increase public awareness and to provide medical staff with sufficient knowledge and skills to adequately acknowledge presented symptoms.
    Type of Medium: Online Resource
    ISSN: 2194-8011 , 2194-802X
    Language: English
    Publisher: Walter de Gruyter GmbH
    Publication Date: 2021
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