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The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment.

ABSTRACT: AIM: The aim of this study is to examine the attitudes of patients, who presented with advanced glaucoma in at least one eye, to participation in a randomised prospective trial comparing primary medical treatment with primary surgical treatment for advanced glaucoma. METHODS: Patients who had presented with advanced glaucoma (>15 dB loss mean deviation on Humphrey visual field testing) in at least one eye were asked to participate. Five focus groups comprising of 4-8 patients and consisting of 29 patients in total were undertaken. The group interviews were conducted by two experienced qualitative researchers, an ophthalmic clinician was present to clarify technical issues. The focus group discussions were taped and transcribed in full, and analysed through a process of familiarisation, open (inductive) coding, theme generation, theme refinement, and thematic mapping. RESULTS: Three overarching themes were identified: (1) the extent of patients' knowledge, (2) anxieties about surgery, and (3) concerns about compromised care due to trial involvement; these themes were further classified into eight sub-themes. CONCLUSIONS: Patients' willingness to participate in randomised clinical studies is significantly connected to their level of comprehension and insight about the medical condition, its treatment, and the research process; misunderstandings about any of these aspects may act as a significant barrier to trial recruitment. Recruitment rates for future randomised trials may be enhanced by ensuring that patients have full and accurate information about the treatment alternatives, and that uncertainty exists for best patient outcomes between treatment options, and reassuring potential participants that the research process, in particular randomisation, will not compromise clinical care.

SUBMITTER: Leighton P

PROVIDER: S-EPMC3272192 | biostudies-other | 2012 Feb

REPOSITORIES: biostudies-other

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Project description:ImportanceIn 2021, New Mexico passed legislation allowing nurse practitioners and physician assistants (referred to herein as advanced practice professionals [APPs]) to prescribe medications for medical aid in dying (MAID). Other US states with existing MAID laws (eg, Washington) are also considering expanding MAID prescribing authority to APPs. There is a lack of research exploring APP knowledge of, willingness to, and comfort with acting as a prescribing or consulting clinician for MAID.ObjectiveTo assess perspectives of oncology APPs regarding MAID, including their willingness to prescribe and/or consult for MAID and factors associated with willingness.Design, setting, and participantsThis cross-sectional, self-report survey study used data collected from APPs working at a comprehensive cancer center in Washington State in fall 2021.Main outcomes and measuresThe primary survey question was whether APPs would be willing to participate in death with dignity, the term used for MAID in Washington. Survey questions evaluated how influential specific factors were on APP views on MAID as well as respondents' knowledge of and comfort with aspects of the MAID process.ResultsOf 167 eligible APPs, 77 (46.1%) responded to the survey. Most respondents (68 [88.3%]) reported their race and ethnicity as White; 72 (93.5%) identified as a woman. Medical oncology (28 [36.4%]) was the most common field of practice, and 21 respondents (27.3%) reported having practiced as an APP for 6 to 10 years. Of all respondents, 61 (79.2%) reported having at least 1 patient who inquired about MAID; depending on the question, less than a third of respondents (5.0%-27.0%) endorsed feeling knowledgeable or very knowledgeable about any aspect of the MAID process. In this study, 39 APPs (50.6%) endorsed being willing to participate in MAID either as a consulting or prescribing clinician, whereas 31 (40.3%) were uncertain of whether they would participate. Willingness to participate was associated with having had more patients pursue MAID (33 of the 39 willing participants [84.6%] vs 15 of the 31 unsure participants [48.4%] reported having 1 or more patients pursue MAID). Higher knowledge and comfort scores were both significantly associated with increased odds of being willing to participate (odds ratio, 1.14 per 1-point score increase [95% CI, 1.03-1.27]; P = .01) vs unsure (1.18 [95% CI, 1.07-1.30; P = .001).Conclusions and relevanceThe results of this survey study suggest that oncology APPs may require preparation for the addition of MAID to their scope of practice. This study also raises questions for future research regarding support for APPs who may be considering participation in MAID but question their role or want physician involvement.

Project description:BackgroundPrimary congenital glaucoma (PCG) manifests within the first few years of a child's life and is not associated with any other systemic or ocular abnormalities. PCG results in considerable morbidity even in developed countries. Several surgical techniques for treating this condition, and lowering the intraocular pressure (IOP) associated with it, have been described.ObjectivesTo compare the effectiveness and safety of different surgical techniques for PCG.Search methodsWe searched CENTRAL (which contains the Cochrane Eyes and Vision Group Trials Register) (The Cochrane Library 2014, Issue 6), Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid MEDLINE Daily, Ovid OLDMEDLINE (January 1946 to June 2014), EMBASE (January 1980 to June 2014), (January 1982 to June 2014), PubMed (January 1946 to June 2014), the metaRegister of Controlled Trials (mRCT) (www.controlled-trials.com), ClinicalTrials.gov (www.clinicaltrials.gov), the WHO International Clinical Trials Registry Platform (ICTRP) (www.who.int/ictrp/search/en). We did not use any date or language restrictions in the electronic searches for trials. We last searched the electronic databases on 23 June 2014.Selection criteriaWe included all randomized and quasi-randomized trials in which different types of surgical interventions were compared in children under five years of age with PCG.Data collection and analysisWe used standard methodological procedures specified by The Cochrane Collaboration.Main resultsWe included a total of six trials (four randomized and two quasi-randomized) with 102 eyes in 61 children. Two trials were conducted in the USA and one trial each in Egypt, Israel, Lebanon and Saudi Arabia. All trials included children aged younger than one year when diagnosed with PCG, and followed them for periods ranging from six months to five years.No two trials compared the same pair of surgical interventions, so we did not perform any meta-analysis. One trial compared trabeculotomy versus goniotomy; a second trial compared combined trabeculectomy-trabeculotomy with mitomycin C versus trabeculectomy-trabeculotomy with mitomycin C and deep sclerectomy; a third trial compared combined trabeculotomy-trabeculectomy versus trabeculotomy; a fourth trial compared one goniotomy versus two goniotomies; a fifth trial compared trabeculotomy versus viscocanalostomy; and the sixth trial compared surgical goniotomy versus neodymium-YAG laser goniotomy. For IOP change and surgical success (defined by IOP achieved), none of the trials reported a difference between pairs of surgical techniques. However, due to the limited sample sizes for all trials (average of 10 children per trial), the evidence as to whether a particular surgical technique is effective and which surgical technique is better still remains uncertain. Adverse events, such as choroidal detachment, shallow anterior chamber and hyphema, were reported from four trials. None of the trials reported quality of life or economic data.These trials were neither designed nor reported well overall. Two trials were quasi-randomized trials and judged to have high risk of selection bias; four trials were at unclear or high risk for performance bias and detection bias; and we judged one trial to have high risk of attrition bias due to high proportions of losses to follow-up. Due to poor study design and reporting, the reliability and applicability of evidence remain unclear.Authors' conclusionsNo conclusions could be drawn from the trials included in this review due to paucity of data. More research is needed to determine which of the many surgeries performed for PCG are effective.

Project description:BackgroundParticipation rate is one of the main challenges medical researchers face. We examined how demographic background and trust in medical research affect the willingness of people to participate in medical research in Taiwan.MethodsData from the 2011 Taiwan Genomic Survey (a nationwide representative face-to-face survey) were analyzed. The survey included a vignette of a researcher conducting a clinical trial of an investigative medicinal product, and questions for interviewees regarding their willingness to participate in research after they were informed of the scenario description. A total of 3,159 people, aged 18 to 70 years, were sampled, and 1,538 of them completed the survey. With missing data excluded, a total of 1,389 respondents were included in the final analysis.ResultsAbout 12 percent of the respondents answered that they would be willing to participate in medical research. Respondents who had college degrees or above and were married or lived with significant others were less likely to participate in medical research. By contrast, male respondents, and respondents whose household family members had biomedicine-related degrees or had one themselves were more likely to participate in medical research. After adjustment for demographic factors, respondents were more likely to participate in medical research if: (1) they expressed trust in doctors conducting medical research; (2) they agreed that doctors would never ask them to join medical research studies that might harm them; (3) they thought that participating in a medical research study would be safe; and (4) they agreed that researchers had no selfish reasons for doing the medical research.DiscussionSome of our findings, such as the effects of education level and marital status on participation in medical research, are different from most findings of previous studies conducted in other countries. This study is useful for developing strategies to improve participant recruitment. Relevant discussions on research ethics and policies, such as the importance of public trust in medical researchers, could also be based on this study.

Project description:AimThe aim of the study is to explore to what extent members of the community are willing to participate in the way their primary care practice is organized and which characteristics of people and community are associated with this willingness.BackgroundCommunity participation in primary care refers to involvement of community members in the organization, governance and policy making of primary care facilities. Due to demographic changes and changes in the role of patients and the community concerning health care, it becomes important to include the social environment of patients into healthcare. Community participation may help GPs to improving their practice and providing care according to the needs of the population. Interpreted this way, it may be an important contributor to quality of care.MethodsIn 2016, a web questionnaire was send to 800 members of the Dutch Health Care Consumer Panel. The response rate was 34%. Willingness to participate was divided into perceived readiness, ability and time to participate. The data were analysed using frequency tables and linear regression analysis.FindingsHalf of the participants were ready to give their opinion on primary care and one-third reported willingness to participate in decision making. Participants were less optimistic about their ability to participate and the time they have available for participation. Readiness and perceived ability were mainly determined by the importance that the respondents attributed to participation. Participants with previous experience in volunteering appeared more willing to spend time on participation.ConclusionsThis study showed that half of the respondents are willing to participate, but they are less sure about their ability to do so and that finding time to participate is seen as problematic. Future research should focus on which characteristics influence willingness. This knowledge might help primary care facilities to recruit people more easily and successfully.

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The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment.

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