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1.  Feasibility of a Wiki as a Participatory Tool for Patients in Clinical Guideline Development 
Background
Patient participation is essential in developing high-quality guidelines but faces practical challenges. Evidence on timing, methods, evaluations, and outcomes of methodologies for patient participation in guideline development is lacking.
Objective
To assess the feasibility of a wiki as a participatory tool for patients in the development of a guideline on infertility determined by (1) use of the wiki (number of page views and visitors), (2) benefits of the wiki (ie, number, content, and eligibility of the recommendations to be integrated into the guideline), and (3) patients’ facilitators of and barriers to adoption, and the potential challenges to be overcome in improving this wiki.
Methods
To obtain initial content for the wiki, we conducted in-depth interviews (n = 12) with infertile patients. Transcripts from the interviews were translated into 90 draft recommendations. These were presented on a wiki. Over 7 months, infertile patients were invited through advertisements or mailings to formulate new or modify existing recommendations. After modifying the recommendations, we asked patients to select their top 5 or top 3 recommendations for each of 5 sections on fertility care. Finally, the guideline development group assessed the eligibility of the final set of recommendations within the scope of the guideline. We used a multimethod evaluation strategy to assess the feasibility of the wiki as a participatory tool for patients in guideline development.
Results
The wiki attracted 298 unique visitors, yielding 289 recommendations. We assessed the 21 recommendations ranked as the top 5 or top 3 for their eligibility for being integrated into the clinical practice guideline. The evaluation identified some challenges needed to be met to improve the wiki tool, concerning its ease of use, website content and layout, and characteristics of the wiki tool.
Conclusions
The wiki is a promising and feasible participatory tool for patients in guideline development. A modified version of this tool including new modalities (eg, automatically limiting the number and length of recommendations, using a fixed format for recommendations, including a motivation page, and adding a continuous prioritization system) should be developed and evaluated in a patient-centered design.
doi:10.2196/jmir.2080
PMCID: PMC3510744  PMID: 23103790
Wiki; patient participation; infertility; Web 2.0; guideline development
2.  Improving patient-centeredness of fertility care using a multifaceted approach: study protocol for a randomized controlled trial 
Trials  2012;13:175.
Background
Beside traditional outcomes of safety and (cost-)effectiveness, the Institute of Medicine states patient-centeredness as an independent outcome indicator to evaluate the quality of healthcare. Providing patient-centered care is important because patients want to be heard for their ideas and concerns. Healthcare areas associated with high emotions and intensive treatment periods could especially benefit from patient-centered care. How care can become optimally improved in patient-centeredness is unknown. Therefore, we will conduct a study in the context of Dutch fertility care to determine the effects of a multifaceted approach on patient-centeredness, patients’ quality of life (QoL) and levels of distress. Our aims are to investigate the effectiveness of a multifaceted approach and to identify determinants of a change in the level of patient-centeredness, patients’ QoL and distress levels. This paper presents the study protocol.
Methods/Design
In a cluster-randomized trial in 32 Dutch fertility clinics the effects of a multifaceted approach will be determined on the level of patient-centeredness (Patient-centredness Questionnaire – Infertility), patients’ QoL (FertiQoL) and levels of distress (SCREENIVF). The multifaceted approach includes audit and feedback, educational outreach visits and patient-mediated interventions. Potential determinants of a change in patient-centeredness, patients’ QoL and levels of distress will be collected by an addendum to the patients’ questionnaire and a professionals’ questionnaire. The latter includes the Organizational Culture Assessment Instrument about the clinic’s culture as a possible determinant of an increase in patient-centered care.
Discussion
The study is expected to yield important new evidence about the effects of a multifaceted approach on levels of patient-centeredness, patients’ QoL and distress in fertility care. Furthermore, determinants associated with a change in these outcome measures will be studied. With knowledge of these results, patient-centered care and thus the quality of healthcare can be improved. Moreover, the results of this study could be useful for similar initiatives to improve the quality of care delivery. The results of this project are expected at the end of 2013.
Trial registration
Clinicialtrials.gov NCT01481064
doi:10.1186/1745-6215-13-175
PMCID: PMC3489822  PMID: 23006997
Patient-centeredness; Quality of life; Distress; Multifaceted approach; Determinants; Protocol
3.  The European Society of Human Reproduction and Embryology guideline for the diagnosis and treatment of endometriosis: an electronic guideline implementability appraisal 
Background
Clinical guidelines are intended to improve healthcare. However, even if guidelines are excellent, their implementation is not assured. In subfertility care, the European Society of Human Reproduction and Embryology (ESHRE) guidelines have been inventoried, and their methodological quality has been assessed. To improve the impact of the ESHRE guidelines and to improve European subfertility care, it is important to optimise the implementability of guidelines. We therefore investigated the implementation barriers of the ESHRE guideline with the best methodological quality and evaluated the used instrument for usability and feasibility.
Methods
We reviewed the ESHRE guideline for the diagnosis and treatment of endometriosis to assess its implementability. We used an electronic version of the guideline implementability appraisal (eGLIA) instrument. This eGLIA tool consists of 31 questions grouped into 10 dimensions. Seven items address the guideline as a whole, and 24 items assess the individual recommendations in the guideline. The eGLIA instrument identifies factors that influence the implementability of the guideline recommendations. These factors can be divided into facilitators that promote implementation and barriers that oppose implementation. A panel of 10 experts from three European countries appraised all 36 recommendations of the guideline. They discussed discrepancies in a teleconference and completed a questionnaire to evaluate the ease of use and overall utility of the eGLIA instrument.
Results
Two of the 36 guideline recommendations were straightforward to implement. Five recommendations were considered simply statements because they contained no actions. The remaining 29 recommendations were implementable with some adjustments. We found facilitators of the guideline implementability in the quality of decidability, presentation and formatting, apparent validity, and novelty or innovation of the recommendations. Vaguely defined actions, lack of facilities, immeasurable outcomes, and inflexibility within the recommendations formed barriers to implementation. The eGLIA instrument was generally useful and easy to use. However, assessment with the eGLIA instrument is very time-consuming.
Conclusions
The ESHRE guideline for the diagnosis and treatment of endometriosis could be improved to facilitate its implementation in daily practice. The eGLIA instrument is a helpful tool for identifying obstacles to implementation of a guideline. However, we recommend a concise version of this instrument.
doi:10.1186/1748-5908-6-7
PMCID: PMC3034686  PMID: 21247418
4.  Wikis and Collaborative Writing Applications in Health Care: A Scoping Review 
Background
Collaborative writing applications (eg, wikis and Google Documents) hold the potential to improve the use of evidence in both public health and health care. The rapid rise in their use has created the need for a systematic synthesis of the evidence of their impact as knowledge translation (KT) tools in the health care sector and for an inventory of the factors that affect their use.
Objective
Through the Levac six-stage methodology, a scoping review was undertaken to explore the depth and breadth of evidence about the effective, safe, and ethical use of wikis and collaborative writing applications (CWAs) in health care.
Methods
Multiple strategies were used to locate studies. Seven scientific databases and 6 grey literature sources were queried for articles on wikis and CWAs published between 2001 and September 16, 2011. In total, 4436 citations and 1921 grey literature items were screened. Two reviewers independently reviewed citations, selected eligible studies, and extracted data using a standardized form. We included any paper presenting qualitative or quantitative empirical evidence concerning health care and CWAs. We defined a CWA as any technology that enables the joint and simultaneous editing of a webpage or an online document by many end users. We performed qualitative content analysis to identify the factors that affect the use of CWAs using the Gagnon framework and their effects on health care using the Donabedian framework.
Results
Of the 111 studies included, 4 were experimental, 5 quasi-experimental, 5 observational, 52 case studies, 23 surveys about wiki use, and 22 descriptive studies about the quality of information in wikis. We classified them by theme: patterns of use of CWAs (n=26), quality of information in existing CWAs (n=25), and CWAs as KT tools (n=73). A high prevalence of CWA use (ie, more than 50%) is reported in 58% (7/12) of surveys conducted with health care professionals and students. However, we found only one longitudinal study showing that CWA use is increasing in health care. Moreover, contribution rates remain low and the quality of information contained in different CWAs needs improvement. We identified 48 barriers and 91 facilitators in 4 major themes (factors related to the CWA, users’ knowledge and attitude towards CWAs, human environment, and organizational environment). We also found 57 positive and 23 negative effects that we classified into processes and outcomes.
Conclusions
Although we found some experimental and quasi-experimental studies of the effectiveness and safety of CWAs as educational and KT interventions, the vast majority of included studies were observational case studies about CWAs being used by health professionals and patients. More primary research is needed to find ways to address the different barriers to their use and to make these applications more useful for different stakeholders.
doi:10.2196/jmir.2787
PMCID: PMC3929050  PMID: 24103318
collaborative writing applications; collaborative authoring; knowledge management; crowdsourcing; medical informatics; ehealth; Internet; Wiki; Wikipedia; Google Docs; Google Knol; Web 2.0; knowledge translation; evidence-based medicine; participatory med
5.  Barriers and Facilitators for the Implementation of an Online Clinical Health Community in Addition to Usual Fertility Care: A Cross-Sectional Study 
Background
Online health communities are becoming more popular in health care. Patients and professionals can communicate with one another online, patients can find peer support, and professionals can use it as an additional information channel to their patients. However, the implementation of online health communities into daily practice is challenging. These challenges relate to the fact that patients need to be activated to (1) become a member (ie, subscription) and (2) participate actively within the community before any effect can be expected. Therefore, we aimed at answering 2 research questions: (1) what factors are associated with subscription to an online health community, and (2) which are associated with becoming an active participant within an online health community.
Objective
To identify barriers and facilitators as perceived by patients for the implementation of an online health community.
Methods
We performed a cross-sectional study. Three Dutch fertility clinics (2 IVF-licensed) offered their patients a secure online clinical health community through which clinicians can provide online information and patients can ask questions to the medical team or share experiences and find support from peers. We randomly selected and invited 278 men and women suffering from infertility and attending 1 of the participating clinics. Participants filled out a questionnaire about their background characteristics and current use of the online community. Possible barriers and facilitators were divided into 2 parts: (1) those for subscription to the community, and (2) those for active participation in the community. We performed 2 multivariate logistic regression analyses to calculate determinants for both subscription and active participation.
Results
Subscription appeared to be associated with patients’ background characteristics (eg, gender, treatment phase), intervention-related facilitators (odds ratio [OR] 2.45, 95% CI 1.14-5.27), and patient-related barriers (OR 0.20, 95% CI 0.08-0.54), such as not feeling the need for such an online health community. After subscription, determinants for participation consisted of aspects related to participant’s age (OR 0.86, 95% CI 0.76-0.97), length of infertility (OR 1.48, 05% CI 1.09-2.02), and to intervention-related facilitators (OR 5.79, 95% CI 2.40-13.98), such as its reliable character and possibility to interact with the medical team and peers.
Conclusions
Implementing an online health community in addition to usual fertility care should be performed stepwise. At least 2 strategies are needed to increase the proportion of patient subscribers and consequently make them active participants. First, the marketing strategy should contain information tailored to different subgroups of the patient population. Second, for a living online health community, incorporation of interactive elements, as well as frequent news and updates are needed. These results imply that involving patients and their needs into the promotion strategy, community’s design, and implementation are crucial.
doi:10.2196/jmir.2098
PMCID: PMC3815434  PMID: 23996964
community networks; infertility; Internet; quality of health care; patient-centered care
6.  Improving the implementation of tailored expectant management in subfertile couples: protocol for a cluster randomized trial 
Background
Prognostic models in reproductive medicine can help to identify subfertile couples who would benefit from fertility treatment. Expectant management in couples with a good chance of natural conception, i.e., tailored expectant management (TEM), prevents unnecessary treatment and is therefore recommended in international fertility guidelines. However, current implementation is not optimal, leaving room for improvement. Based on barriers and facilitators for TEM that were recently identified among professionals and subfertile couples, we have developed a multifaceted implementation strategy. The goal of this study is to assess the effects of this implementation strategy on the guideline adherence on TEM.
Methods/design
In a cluster randomized trial, 25 clinics and their allied practitioners units will be randomized between the multifaceted implementation strategy and care as usual. Randomization will be stratified for in vitro fertilization (IVF) facilities (full licensed, intermediate/no IVF facilities). The effect of the implementation strategy, i.e., the percentage guideline adherence on TEM, will be evaluated by pre- and post-randomization data collection. Furthermore, there will be a process and cost evaluation of the strategy. The implementation strategy will focus on subfertile couples and their care providers i.e., general practitioners (GPs), fertility doctors, and gynecologists. The implementation strategy addresses three levels: patient level: education materials in the form of a patient information leaflet and a website; professional level: audit and feedback, educational outreach visit, communication training, and access to a digital version of the prognostic model of Hunault on a website; organizational level: providing a protocol based on the guideline. The primary outcome will be the percentage guideline adherence on TEM. Additional outcome measures will be treatment-, patient-, and process-related outcome measures.
Discussion
This study will provide evidence about the effectiveness and costs of a multifaceted implementation strategy to improve guideline adherence on TEM.
Trial registration
http://www.trialregister.nlNTR3405. This study is sponsored by ZonMW.
doi:10.1186/1748-5908-8-53
PMCID: PMC3680105  PMID: 23688282
7.  Long term costs and effects of reducing the number of twin pregnancies in IVF by single embryo transfer: the TwinSing study 
BMC Pediatrics  2010;10:75.
Background
Pregnancies induced by in vitro fertilisation (IVF) often result in twin gestations, which are associated with both maternal and perinatal complications. An effective way to reduce the number of IVF twin pregnancies is to decrease the number of embryos transferred from two to one. The interpretation of current studies is limited because they used live birth as outcome measure and because they applied limited time horizons. So far, research on long-term outcomes of IVF twins and singletons is scarce and inconclusive. The objective of this study is to investigate the short (1-year) and long-term (5 and 18-year) costs and health outcomes of IVF singleton and twin children and to consider these in estimating the cost-effectiveness of single embryo transfer compared with double embryo transfer, from a societal and a healthcare perspective.
Methods/Design
A multi-centre cohort study will be performed, in which IVF singletons and IVF twin children born between 2003 and 2005 of whom parents received IVF treatment in one of the five participating Dutch IVF centres, will be compared. Data collection will focus on children at risk of health problems and children in whom health problems actually occurred. First year of life data will be collected in approximately 1,278 children (619 singletons and 659 twin children). Data up to the fifth year of life will be collected in approximately 488 children (200 singletons and 288 twin children). Outcome measures are health status, health-related quality of life and costs. Data will be obtained from hospital information systems, a parent questionnaire and existing registries. Furthermore, a prognostic model will be developed that reflects the short and long-term costs and health outcomes of IVF singleton and twin children. This model will be linked to a Markov model of the short-term cost-effectiveness of single embryo transfer strategies versus double embryo transfer strategies to enable the calculation of the long-term cost-effectiveness.
Discussion
This is, to our knowledge, the first study that investigates the long-term costs and health outcomes of IVF singleton and twin children and the long-term cost-effectiveness of single embryo transfer strategies versus double embryo transfer strategies.
doi:10.1186/1471-2431-10-75
PMCID: PMC2978208  PMID: 20961411

Results 1-7 (7)