Uninformed Decisions? The Online Presentation of Success and Failure of IVF and Related Methods on German IVF Centre Websites.
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ABSTRACT:
SUBMITTER: Kadi S
PROVIDER: S-EPMC4686366 | biostudies-literature | 2015 Dec
REPOSITORIES: biostudies-literature
Publications
Uninformed Decisions? The Online Presentation of Success and Failure of IVF and Related Methods on German IVF Centre Websites.
Geburtshilfe und Frauenheilkunde 20151201 12
<b>Background:</b> Patients increasingly use the internet as a source of medical information before initial contact with doctors and during treatment. This applies to reproductive medicine too, where the internet could offer patients the chance to inform themselves in advance about specific procedures and the treatment centres that offer them. In this way it could potentially contribute to informed patient decision-making. This article analyses the web presence of German fertility treatment cent ...[more]
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Project description:BackgroundThe success rate of IVF treatment is low. A recent systematic review and meta-analysis found that the outcome of IVF treatment could be improved in patients who have experienced recurrent implantation failure if an outpatient hysteroscopy (OH) is performed before starting the new treatment cycle. However, the trials were of variable quality, leading to a call for a large and high-quality randomised trial. This protocol describes a multi-centre randomised controlled trial to test the hypothesis that performing an OH prior to starting an IVF cycle improves the live birth rate of the subsequent IVF cycle in women who have experienced two to four failed IVF cycles.Methods and designEligible and consenting women will be randomised to either OH or no OH using an internet based trial management programme that ensures allocation concealment and employs minimisation for important stratification variables including age, body mass index, basal follicle stimulating hormone level and number of previous failed IVF cycles. The primary outcome is live birth rate per IVF cycle started. Other outcomes include implantation, clinical pregnancy and miscarriage rates.The sample size for this study has been estimated as 758 participants with 379 participants in each arm. Interim analysis will be conducted by an independent Data Monitoring Committee (DMC), and final analysis will be by intention to treat. A favourable ethical opinion has been obtained (REC reference: 09/H0804/32).Trial registration[corrected] The trial has been assigned the following ISRCTN number: ISRCTN35859078.
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Project description:FMR1 CGG trinucleotide repeat expansions are associated with Fragile X syndrome (full mutations) and primary ovarian insufficiency (premutation range); the effect of FMR1 on the success of fertility treatment is unclear. The effect of FMR1 CGG repeat lengths on IVF outcomes after ovarian stimulation was reviewed. PubMed was searched for studies on IVF-related outcomes reported by FMR1 trinucleotide repeat length published between 2002 and December 2017. For women with CGG repeats in the normal (<45 CGG), intermediate range (45-54 CGG), or both, research supports a minimal effect on IVF outcomes, including pregnancy rates; although one study reported lower oocyte yields after IVF stimulation in women with lower CGG repeat lengths and normal ovarian reserve. Meta-analysis revealed no association within subcategories of normal repeat length (<45 CGG) and IVF pregnancy rates (summary OR 1.0, 95% CI 0.87 to 1.15). Premutation carriers (CGG 55-200) may have reduced success with IVF treatment (lower oocyte yield) than women with a normal CGG repeat length or a full mutation, although findings are inconsistent. Direct implications of the repeat length on inheritance and the risk of Fragile X syndrome have been observed. Patients may require clinical and psychological counselling, and further preimplantation genetic testing options should be considered. Thus, there are clinical and psychological counseling implications for patients and potential further patient decisions regarding preimplantation genetic testing options.
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Project description:BackgroundPatient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients' risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice.MethodsThe International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice.ResultsThe 'Kidney Failure Decision Aid' consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A 'patients-like-me' infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020.ConclusionsThe 'Kidney Failure Decision Aid' was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial.
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Project description:BackgroundPhysician rating websites (PRWs) allow patients to rate, comment, and discuss physicians' quality. The ability of PRWs to influence patient decision making and health care quality is dependent, in part, on sufficient awareness and usage of PRWs. However, previous studies have found relatively low levels of awareness and usage of PRWs, which has raised concerns about the representativeness and validity of information on PRWs.ObjectiveThe objectives of this study were to examine (1) participants' awareness, use, and contribution of ratings on PRWs and how this compares with other rating websites; (2) factors that predict awareness, use, and contribution of ratings on PRWs; and (3) participants' attitudes toward PRWs in relation to selecting a physician.MethodsA mailed cross-sectional survey was sent to a random sample (N=1542) from four North German cities (Nordhorn, Hildesheim, Bremen, and Hamburg) between April and July 2016. Survey questions explored respondents' awareness, use, and contribution of ratings on rating websites for service (physicians, hospitals, and hotels and restaurants) and products (media and technical) in general and the role of PRWs when searching for a new physician.ResultsA total of 280 completed surveys were returned (280/1542, 18.16% response rate), with the following findings: (1) Overall, 72.5% (200/276) of respondents were aware of PRWs. Of the respondents who were aware of PRWs, 43.6% (86/197) had used PRWs. Of the respondents who had used PRWs, 23% (19/83) had rated physicians at least once. Awareness, use, and contribution of ratings on PRWs were significantly lower in comparison with all other rating websites, except for hospital rating websites. (2) Except for the impact of responders' gender and marital status on the awareness of PRWs and responders' age on the use of PRWs, no other predictors had a relevant impact. (3) Whereas 31.8% (85/267) of the respondents reported that PRWs were a very important or somewhat important information source when searching for a new physician, respondents significantly more often reported that family, friends and colleagues (259/277, 93.5%), other physicians (219/274, 79.9%), and practice websites (108/266, 40.6%) were important information sources.ConclusionsWhereas awareness of German PRWs appears to have substantially increased, the use of PRWs and contribution of ratings remains relatively low. Further research is needed to examine the reasons why only a few patients are rating physicians. However, given the information inequality between provider and consumer will always be higher for consumers using the services of physicians, it is possible that people will always rely more on interpersonal recommendations than impersonal public information before selecting a physician.
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Project description:PurposeTo determine age-adjusted overall success rates for patients undergoing clomiphene citrate only minimal stimulation cycle (mini) in vitro fertilization (IVF) without any gonadotropin administration.MethodsEight hundred thirty-nine women (mean age: 38.4?±?0.1 years; 2488 cycles) underwent clomiphene citrate only mini-IVF. Their first oocyte retrieval was between January 2009 and December 2009, with follow-up until December 2014. The cumulative live birth rate (CLBR) per oocyte retrieval cycle started and live birth rate per oocyte was retrospectively analyzed. The basic CLBR was calculated as the number of women who achieved a live birth divided by the total number of women who started oocyte retrieval.ResultsThe mean number of oocytes retrieved was 1.5. The basic CLBRs for all ages after the first and third cycles were 22.6% and 39.2%, respectively. For ??34 years, 35-37 years, 38-40 years, 41-42 years, and ??43 years, CLBRs after the first and third cycles were 42.5% and 70.1%, 32.9% and 49.1%, 20.0% and 38.6%, 12.6% and 25.2%, and 4.4% and 8.8%, respectively. These rates had a significant relationship with age (P?<?0.01). The LBR per oocyte for all ages was 9.6%.ConclusionAcceptable overall IVF success rates can be achieved in clomiphene citrate only mini-IVF, as well as acceptable LBR. The CLBRs and LBRs per oocyte are evidently influenced by women's age.
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Project description:PurposeEnvironmental influences on reproductive success are recognized. We hypothesized that location of fertility clinics may influence treatment success and explored this hypothesis utilizing donor egg IVF (IVF) embryo transfer (ET) model.MethodsPublicly accessible national registry data (Society for Assisted Reproductive Technology) on fresh & frozen (FET) ET cycles undertaken at participating clinics across North America (n = 444 IVF centers) for 2007 were utilized. Information on number of donor egg IVF cycles, live birth (LB) rate following fresh and frozen ET(FET), average number (#) of ET and IVF center's location, geographical coordinates (latitude, longitude, altitude), annualized average temperatures and midyear regional ultraviolet B (UVB) radiation intensity were obtained. Multivariable logistic regression analyses assessed relationship between LBR (in tertile and uppermost versus lesser quartiles) following fresh and FET with geographical coordinates (region and altitude of clinic location) and ecological influences (average temperature and midyear UVB intensity), adjusting for #ET and clinic experience with donor egg IVF.ResultsAverage number of fresh ET, clinic location (region) and midyear UVB intensity were positive predictors of LBR following fresh ET, whereas altitude and annualized average regional temperature demonstrated an inverse relationship with LBR following fresh ET. For FET cycles, #ET, clinic region and altitude were positive determinants of increasing LBR's. Annualized regional temperature and midyear UVB failed to demonstrate any relationship with LB following donor egg FET.ConclusionOur data suggest that ecological influences may relate to donor egg IVF cycle success. Future studies are needed to better elucidate the mechanisms that could explain the observed associations.
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Project description:BackgroundThe Internet is a frequently used source of health information. Adolescents in particular seem to be receptive to online health information (OHI) and often incorporate such information in their decision-making processes. Yet, OHI is often incomplete, inaccurate, or unreliable. This study assessed the quality of Hebrew online (non-user-generated) content on oral contraceptives (OC), with regard to accuracy/completeness, credibility, and usability.MethodsTwenty-nine websites in Hebrew, including those of the four Israeli HMOs, were identified and evaluated. The websites were categorized as: HMO, health portal, contraception-specific, promotional-commercial, and life style and women's health. A set of established content parameters was selected by a family planning expert to assess accuracy/completeness. The Health on the Net Foundation Code of Conduct (HONcode) principles were used to assess the websites' reliability. Usability was assessed by applying items selected from the Minervation Validation and the University of Michigan's 'Website Evaluation checklist' scale. Mean scores, standard deviations (SD), and ranges were calculated for all websites and for category-specific websites. Correlation between dimensions and Inter-rater reliability were also examined.ResultsThe mean score for accuracy/completeness was 50.9% for all websites (SD=30.1%, range 8-100%). Many websites failed to provide complete information, or provided inaccurate information regarding what to do when a pill is missed and when to use back-up methods. The average credibility score for all websites was 70.6% (SD=15.1, range=38=98%). The credibility parameters that were most commonly absent were funding source, authoring, date of content creation and last modification, explicit reference to evidence-based information, and references and citations. The average usability score for all websites was 94.5% (SD=6.9%, range 79-100%). A weak correlation was found between the three quality parameters assessed.ConclusionsWide variation was noted in the quality of Hebrew-language OC websites. HMOs' websites scored highest on credibility and usability, and contraceptive-specific websites exhibited the greatest accuracy/completeness. The findings highlight the need to establish quality guidelines for health website content, train health care providers in assisting their patients to seek high quality OHI, and strengthen e-health literacy skills among online-information seekers, including perhaps health professionals.
| S-EPMC3475130 | biostudies-literature
Project description:BACKGROUND:Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. OBJECTIVE:The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. METHODS:In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for "melanoma" and "immunotherapy" in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites' popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. RESULTS:Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69% (16%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. CONCLUSIONS:Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency.
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