Willingness Of Participants Research Articles

Abstract P5-14-02: Breast cancer clinical trial participation rate among patients of low socioeconomic status at a comprehensive cancer center

Abstract Background: Patients with higher socioeconomic status (SES) are overrepresented in NCI-sponsored cancer clinical trials (CCT). Inadequate access, social and cultural barriers have been described as reasons for poor accrual of patients with low SES into clinical trials. Racial minorities including African Americans (AA) and Hispanics are underrepresented in CCT and often experience issues related to lack of access. On the other hand, survey studies throughout United States suggest equal willingness for participation in CCT among all racial categories. When access to CCT is not a barrier to enrollment, the rate of CCT participation by Racial and Ethnic minorities with low SES is not well studied. Methods: We performed a retrospective review of the database of new patients screened for breast CCT at Dan L Duncan Comprehensive Cancer Center (DLDCCC). DLDCCC is an ideal venue for studies on clinical trial diversity because it provides cancer care to two very different patient demographics: 1) Smith Clinic is a Harris Health System (HHS) cancer clinic where a majority of the patients are of low SES; half of our patients earn less than $25,000 annually, 60% are uninsured using a county financial assistance program called “Gold Card”, 65% are unable to speak proficient English, and 52% are Hispanic, 25% AA, 9% Caucasian and 5% Asian, 2) Baylor St Luke’s Medical Center (BSLMC) serves predominantly Caucasian patients with >95% of the patients having federal or commercial insurance. Cancer clinical trials are available at both sites, and all patients across the two clinics have equal opportunity for enrollment. The database dates back to 5/2015 and includes 3,084 patients. Using the chi-squared test, we compared the rate of trial availability, trial eligibility and enrollment for breast CCT between two patient populations receiving care at Smith clinic vs. BSLMC. We tabulated the rate of trial participation decline at each clinic per year from 5/2015 to 6/2021. The study had IRB approval from Baylor College of Medicine.Results: Among the 3,084 new-to-practice patients, 1,664 patients were seen at BSLMC and 1,420 were seen at Smith Clinic. Clinical trials were available for 758 (53.4%) patients at Smith clinic and 742 (44.6%) patients at BSLMC, p<0.001. Patients were eligible for clinical trials at a similar rate at each site: 193 (25.5%) at Smith Clinic and 182 (24.5%) at BSLMC clinic. Patients at Smith Clinic were more likely to decline clinical trial enrollment compared to BSLMC (62.2% vs. 41.8%, P<0.001). The rate of CCT participation decline was consistent across the years, 2015-2021. Conclusion: While access to clinical trials has been considered a major rate limiting step towards improving diversity in clinical trials, our experience at DLDCCC Breast Clinics suggests that patients with low SES more frequently refuse trial enrollment even when they have access and are trial eligible. Factors underlying our population’s excess reluctance for enrollment onto CCT at Smith clinic compared to BSLMC is currently under investigation, to be reported at the SABCS. Citation Format: Maryam Nemati Shafaee, Emily L Podany, Katherine Sanchez, Nicole Higashiyama, Valentina Hoyos, Liz Binu Micheal, Kristen Otte, Anne Pavlick, Julie Nangia, Alphi Kuriakose, Kent C Osborne, Maria Jibaja-Weiss, Matthew J Ellis, Shaun Bulsara, Mothaffar Rimawi. Breast cancer clinical trial participation rate among patients of low socioeconomic status at a comprehensive cancer center [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P5-14-02.

Sosialiasi Parenting untuk Peningkatan Kualitas Pendidikan Keluarga Milenial

Partners in Community Service (PKM) activities are PKK in Bangeran Village, Dukun District, Gresik Regency. The main problem that became the background of this socialization was the lack of information, insight, and parenting knowledge possessed by PKK cadres in Bangeran Village even though the majority of cadres were millennials. The purpose of this activity is to socialize parenting models that are in line with today's challenges, namely parenting for millennial parents. The methods of socializing parenting activities this time were lectures, questions and answers, and discussions. The results of this activity are full support from village officials who enthusiastically facilitate the implementation of this activity in full, the enthusiasm of PKK cadres who actively participate in parenting activities to completion, and the willingness of participants to learn and share experiences related to parenting. It is hoped that there will be a follow-up activity in the form of a parenting series considering that this parenting activity is the first to be held in Bangeran Village, Dukun District, Gresik Regency. This activity in itself became new information for PKK cadres who were present in terms of parenting or parenting.

Comparison of factors influencing the willingness to donate biospecimens among guardians of children with cancer and adult cancer patients.

BackgroundThis study examined and compared the attitudes and willingness of guardians of children with cancer and adult cancer patients toward donating biospecimens and clinical data for cancer research.MethodsWe conducted a cross‐sectional study among guardians of children with cancer (Guardian group) from Shanghai Children's Medical Center and adult cancer patients (Adult group) from Shanghai Ninth People's Hospital between February 1, 2019, and January 31, 2020. Participants’ demographic data, willingness, and motivations for biospecimen donation were collected and analyzed.ResultsOf 670 participants, 90.8% (318/350) in the Guardian group and 88.1% (282/320) in the Adult group completed the questionnaire. Most participants were willing to donate residual tissue samples (92.8% in the Guardian group vs. 79.4% in the Adult group, p ψ = 0.032) and clinical data (94.0% vs. 72.3%, p ψ < 0.001) for medical research. Logistic regression analysis indicated that only child status (odds ratio [OR] = 0.140, p = 0.02), history of blood donation (OR = 4.467, p = 0.019) in the Guardian group, education (OR = 0.387, p = 0.037), and history of blood donation (OR = 2.556, p = 0.016) in the Adult group were significantly associated with participants’ willingness to donate biospecimens. The primary motivation for donation was helping other patients with cancer (65.4% vs. 24.5%, p ψ < 0.001). The major barriers to donation were the potential to cause physical discomfort (61.0% vs. 64.9%, p ψ = 0.032).ConclusionsGuardians of children with cancer were more willing to donate biospecimens than adult cancer patients in China. It is essential to promote awareness of biospecimens donation, especially in adult cancer patients.

Peningkatan Pengetahuan dan Keterampilan PHBS Sebagai Upaya Pencegahan Pandemi Covid-19 Dengan Media Video Interaktif di Yayasan Al-Kahfi Surakarta

The Al-Kahfi Foundation is a social institution engaged in education and charity. The results of the preliminary survey conducted through observation and interviews with foundation administrators found that there were problems controlling children's behavior towards personal health, especially those who still lived with their families. The results of a survey of 10 orphanage children showed that as many as 40% of children had insufficient knowledge and did not understand the importance of having a clean and healthy lifestyle (PHBS), and 50% of children did not clearly understand what Covid-19 was and the dangers of the virus. The purpose of this activity is to increase PHBS knowledge and skills; Increase participants' awareness of the importance of preventing the dangers arising from the Covid-19 disease; Increase the willingness and ability of participants to prevent themselves from the dangers of Covid-19. The media used to support these community service activities are: Videos, screening of documentary films about smoking; Power Point about the extension material includes; LCD; Pre-test and post-test sheets. While the methods used are lectures, discussions, and questions and answers. Extension was carried out both verbally and by video playback. The PHBS video screening is intended to provide information on how to wash hands and wear masks properly and correctly, cough etiquette, maintain balanced nutrition, and carry out social distancing. Playing motion pictures is the method chosen so that the steps in preventing Covid-19 are more interesting and can be easily remembered by children and adolescents, so that their implementation is faster. Based on the results of outreach activities, it is known that counseling using the visual method or video playback takes a person's attention more than the lecture method.

What Happened in 'The HERizon Project'?-Process Evaluation of a Multi-Arm Remote Physical Activity Intervention for Adolescent Girls.

This mixed-methods process evaluation examines the reach, recruitment, fidelity, adherence, acceptability, mechanisms of impact, and context of remote 12-week physical activity (PA) interventions for adolescent girls named The HERizon Project. The study was comprised of four arms—a PA programme group, a behaviour change support group, a combined group, and a comparison group. Data sources included intervention deliverer and participant logbooks (100 and 71% respective response rates, respectively), exit surveys (72% response rate), and semi-structured focus groups/interviews conducted with a random subsample of participants from each of the intervention arms (n = 34). All intervention deliverers received standardised training and successfully completed pre-intervention competency tasks. Based on self-report logs, 99% of mentors adhered to the call guide, and 100% of calls and live workouts were offered. Participant adherence and intervention receipt were also high for all intervention arms. Participants were generally satisfied with the intervention components; however, improvements were recommended for the online social media community within the PA programme and combined intervention arms. Autonomy, sense of accomplishment, accountability, and routine were identified as factors facilitating participant willingness to adhere to the intervention across all intervention arms. Future remote interventions should consider structured group facilitation to encourage a genuine sense of community among participants.

Incentive and Game of Information Sharing Based on Blockchain Technology

With the development of the information age, the efficiency of information resource sharing has not been fully released, and the willingness of participants to share information needs to be improved. It is of great significance to promote the willingness of participants to share information and increase the value of information utilization. Aiming at the problem of low information sharing rate of participants, this paper constructs an evolutionary game model between information sharing and non-sharing participants under the blockchain technology platform and introduces the critical value corresponding to the initial proportion of participants under the condition of a stable strategy as a trigger Conditions, dynamic adjustment of incentive coefficients to maintain a stable strategy of information sharing, simulation with MATLAB. Research shows that the use of blockchain smart contract technology to dynamically adjust the evolutionary stability strategy is shown as: When the initial proportion of participants is lower than the critical value, the incentive parameters are transformed into shared incentive benefits to motivate the participants to actively participate in information sharing; when it is higher than the critical value, the incentive parameters are transformed into sharing costs and dynamically adjusted to reach the initial participants. The proportion is maximized, which provides a strategy for participants to choose information-sharing strategies.

Assessment of the level of willingness to donate liver and kidney among the general population in Saudi Arabia

Background: For patients with end-stage liver disease and underlying chronic kidney disease or prolonged acute kidney injury, liver and kidney transplantation is a life-saving procedure. As a result, estimating the general population’s willingness to donate liver and kidney is critical. Objectives: To assess the level of willingness to donate liver and kidney and its relationship with different socio demographic factors among the general population in Saudi Arabia. Methods: This is cross sectional study that was conducted in various regions in Saudi Arabia during March – May 2022. Data were collected through online self-administered questionnaire prepared via Google Form. Participants were selected using a convenient non-probability sampling technique. SPSS was used to perform data analysis. Results: A total of 983 participants were included in this study. The majority were females. The most common age group was 18-30 years. Our results found that 23.6 % of the participants reported their willingness to donate a liver or a kidney for an unknown patient, whereas 71.1% reported willingness to do so for a close family member or a friend. 58.3% were willing to accept a donated liver or kidney from an unknown donor whereas 67.7% were willing to accept it from a close family member or a friend. Moreover, gender was significantly associated with willingness of donation for an unknown patient (P&lt;0.05) whereas gender was not significantly associated with willingness for donation for a close family member or a friend. Age groups, marital status and occupational status was found to be significantly associated with donation for both unknown patients and close family members or friends (P&lt;0.05). Conclusion: According to our findings, the willingness of participants to donate a kidney or a liver was 23.6 percent for unknown patients and 71.1 percent for close relatives. Gender, marital status, age, income and occupation were observed to be significantly associated with willingness to donate an organ for unknown patients or close family members or friends or both. Key words: donation, liver, kidney, general population, Saudi Arabia

Psychosocial effects of COVID-19 pandemic on dental patients

Introduction: The spread of coronavirus infection (COVID-19) has been increasing exponentially with significant impact on every aspect of people's lives. Dentists in particular are at a greater risk of disease contraction since majority of the procedures are based on direct contact with patients. Aim: This study attempted to understand the attitude of patients seeking dental treatment during the pandemic. Materials and Methods: This was a cross-sectional, self-administered survey which included validated questions on (1) sociodemographic information of participants; (2) participants' basic knowledge on COVID-19; and (3) the willingness and mindset of participants to pursuit dental treatment during, and after the curfew period. Data were collected and statistically analyzed for significance. Results and Discussion: A total of 904 residents from 25 countries. Participants who, or their family members, experienced dental complaints during the curfew period were able to manage via in-office emergency visit, using over counter medication, tele-dentistry or following friends' advice. In total, 48% (433/904) stated to likely seek dental treatment (if needed) with local curfew lifting and 50.4% (456/904) were likely to wait for more than 4 weeks before visiting the dentist. In total, 70% of participants reported sufficient social distancing and wearing masks by the dental staff would address their concerns during dental treatments. Conclusion: Personal financial conditions, lack of awareness, and fear of contracting COVI-19 were identified as important influencing factors for the general public to return for professional dental care. Future, long-term studies to better understand the psychosocial effects of the current pandemic on individuals should be considered.

Trust in Researchers As Fiduciaries, but Not Equitable Brokers, Linked to Willingness for Research Participation

Trust in Researchers As Fiduciaries, but Not Equitable Brokers, Linked to Willingness for Research Participation

Factors Affecting the Willingness to Undertake Premarital Screening Test Among Prospective Marital Individuals.

IntroductionAwareness toward premarital screening test and its influence on preventing high risk marriages has become a concern to the health care system in Oman. This is due to the increased rates of inherited diseases and genetic disorders among the Omani population secondary to consanguineous marriages.ObjectivesThis cross-sectional study aims to describe the utilization of premarital screening tests of selected university study participants as future prospective couples.MethodsThe study included 400 Omani study participants from different majors at a national governmental university that receives students from all over the country. Data was collected using a self-administered questionnaire.ResultsOut of the 400 study participants 193 [48.3%] were females and 195 [48.8%] were males, and 380 [95%] were unmarried and 19 [4.8%] were married. Personal and family history of hereditary diseases and consanguinity between parents were reported by 40 participants [10%], 158 [39.5%] and 175 [43.8%] respectively. Three hundred and sixty-one [90.3%] of the total participants were aware of the availability of premarital screening tests in Oman. A total of 357 [89.3%] thought it is necessary to do a premarital screening test and 367 [91.8%] agreed to carry out it in the future. The novel contribution of this manuscript is that our logistic regression showed that people with personal or family history of hereditary disease, and have consanguinity between parents, being a female did not show willingness to undertake the screening while those who are married, have higher GPA, and older supported it.ConclusionUsability of the freely available premarital screening is low despite the study participants awareness and willingness. Future studies should target those who have a history of genetic disease and females as we found them not willing to undertake the test in this study. We also recommend putting in place mandatory rules and regulations for premarital screening tests with better counselling strategies.

Effects of a structured dance program in Parkinson’s disease. A Greek pilot study

IntroductionDance for Parkinson's Disease® (DfPD®) is a structured dance program that has never been evaluated in Greek PD population. This study assesses for the first time the efficacy, safety and feasibility of DfPD® program in Greek PD patients. Material and methodsA total of 16 early-to-mid-stage PD patients (50% men, aged 56 ± 12) underwent a total of 16 60-min classes of adjusted to Greek music and dance culture DfPD®, twice weekly, over 8 weeks. Assessments were performed at baseline and at the end of the study period and included quality of life (PDQ-8), depressive symptoms (BDI-II), fatigue (PFS-16), cognitive functions (MoCA), balance (BBS) and body mass index (BMI). Safety (possible falls, injuries, muscle soreness or excessive fatigue) and feasibility (technical and financial parameters, willingness for participation and continuation, recruitment rates) were also assessed. ResultsStatistically significant improvements were found in quality of life (29 ± 47%, p = 0,020), depressive symptoms (26 ± 52%, p = 0,046), fatigue (13 ± 20%, p = 0,021), cognitive functions (17 ± 23%, p = 0,010), balance (5 ± 4%, p = 0,003) and BMI (2 ± 2%, p = 0,010). No adverse events, high adherence (93,75%) and low attrition (12,5%) rates were reported. ConclusionA twice weekly 60-min DfPD® class for 8 weeks is a safe and feasible non-pharmacological complementary therapeutic intervention for Greek PD patients and may improve their quality of life, depressive symptoms, fatigue, cognitive functions, balance, and BMI. Further research on this intervention is warranted.

Ultrasound‐assisted lumbar puncture in Alzheimer's disease and related disorders research: A pilot study

AbstractBackgroundLumbar puncture (LP) and collection of cerebrospinal fluid (CSF) are increasingly essential in Alzheimer’s disease and related disorders (ADRD) research. Ultrasound‐assisted lumbar puncture (Us‐LP) has not been studied in ADRD research and could improve LP success rates through more accurate anatomical site selection, precise planning, and individualized intra‐procedure adjustments. This pilot study assessed the feasibility, utility, and tolerability of Us‐LP in ADRD research.MethodLP clinician‐researchers from ADRD centers completed simulation‐based Us‐LP training using the Philips Lumify system, a portable hand‐held transducer connecting to a tablet. Thereafter, clinician‐researchers had the option to use Us‐LP during research LPs. Participant demographics and attitudes about LP were obtained prior to LP. The clinician‐researchers completed a post‐LP questionnaire assessing procedural details, choices, and LP performance.ResultFollowing training, four clinician‐researchers implemented Us‐LP into their practices. Between August 2019‐March 2020, 58 research participants (Table 1) underwent LP. Clinician‐researchers used Us‐LP on 37/58 (64%) participants. Compared to conventional‐LP, Us‐LP choice was associated with higher/highest BMI and older/oldest age categories (Tables 2,3). A U‐shaped relationship between BMI and Age in Us‐LP choice was noted (Figure 1). Us‐LP was also the choice in all who were most obese; in most who were moderately overweight‐to‐obese; and in all who were oldest and moderately overweight‐to‐obese. There were no differences between those receiving conventional‐LP compared to US‐LP with respect to participant history of chronic pain or headache, prior attitudes about LP, success rate, or post‐LP complications.ConclusionTraining clinician‐researchers in Us‐LP and implementing portable hand‐held Us‐LP for ADRD research studies demonstrated feasibility, utility and tolerability. Pilot data indicated that clinician‐researchers were more likely to use Us‐LP in perceived challenging cases including the most obese, and those oldest and moderately overweight‐to‐obese. More studies are needed to determine if using Us‐LP in ADRD research will improve LP success rates, tolerability, and participant willingness to undergo LP. Improving these factors will accelerate CSF biomarker, aging and ADRD research. Furthermore, with potential availability of AD disease‐modifying treatments in the coming years, LP and CSF collection are likely to play a crucial role in patient selection for treatment.

Trial readiness amongst EPAD longitudinal cohort study participants: Insights from the SPEAR study

AbstractBackgroundSPEAR (Study of Participant Experience of Alzheimer’s disease Research) was a sub‐study of work on the Ethical, Legal and Social Implications of the European Prevention of Alzheimer’s Dementia (EPAD) project. The EPAD Longitudinal Cohort Study (LCS) aimed to generate a detailed picture of biological and cognitive change over time, and to build a ‘readiness cohort’ to recruit eligible and willing participants into clinical trials. This poster presents findings about the willingness of cohort participants to participate in a future clinical trial.MethodA mixed‐method study was conducted with members of the EPAD Longitudinal Cohort Study (LCS) to explore motivations to participate, study experience and likely future participation in an Alzheimer’s prevention trial. A questionnaire was completed by 101 participants and 7 study partners from 4 EPAD sites across the UK. In‐depth qualitative interviews were conducted with 25 EPAD participants and study visits observed from the same 4 sites.ResultOver half of participants would consider participating in a clinical trial at the time of data collection. Almost none reported that they would “never” participate. The timing, location and duration of trials were important in how likely they would be to participate. The qualitative findings revealed a range of tentative attitudes towards the prospect of being recruited to a clinical trial, including feeling “morally obliged to continue” or indicating “I don’t want a drug,” should they agree to participate. Some said changes in their memory or cognition may also influence future decisions.ConclusionWhilst we saw high levels of willingness to participate in a clinical trial, these data highlight the importance of understanding how motivations, willingness, and expectations for trial participation may change over time. This supports the use of a staged consent model such as that adopted by EPAD. Qualitative research is needed to understand underlying reasons for participants’ trial readiness to identify any ethical issues in the recruitment of future trial participants.

The influence of brand image on the selection and preference of universities of technology

The research focuses on the factors that influence student brand preferences for Universities of Technology in KwaZulu-Natal. Brand preference is a marketing indicator that reflects a brand's market position. This indicator reveals whether consumers prefer one brand in the same category over another. Developing brand preference as a long-term strategy assists in the development of brand equity, which builds a brand's popularity and market domination in comparison to competitors. The primary goals of this research were to: investigate the most influential factors, influencing student brand choices; and identify traits that students in KwaZulu-Natal consider to be critical in the choosing of a University of Technology (UoT). The study also aimed to recommend strategies to improve service delivery in Universities of Technology. An exploratory study was carried out using a quantitative research approach, wherein questionnaires were administered to 500 DUT and MUT first-year students at the KwaZulu-Natal Universities of Technology and analysed using statistical packages for social sciences (SPSS). The study found that factors, such as investments in brand awareness and brand image, and service delivery influenced participants' choice and willingness to recommend their institutions to potential students. As a result, the report proposes that UoTs prioritize branding efforts as a means of guaranteeing institutional profitability, viability, and customer relationship management.

Predictors of nurses' reporting for work at the time of epidemics and natural disasters; solutions for hospital surge capacity.

To identify the predictors of nurses' presence at hospitals at the time of three types of disasters. This cross-sectional study was performed using a researcher-generated questionnaire. This study was performed on 350 nurses of five public hospitals. Data was collected using a questionnaire in which the respondents were asked about their decisions on reporting for work in the event of three scenarios: epidemic of an unknown contagious respiratory disease, earthquake, and flood. Multiple logistic regression was used to analyze the data. The four predictors of nurses reporting for work include receiving trainings on disasters, and concerns on the non-compensation for providing services following the disaster, concerns about family safety and workplace safety. Although slightly different factors affect the willingness of participants to report for work in each scenario, they can be put in two main categories; namely as personal and impersonal. Devising a family disaster plan and providing educational programs on self-care are two main strategies to increase the chances of presence at work following disasters. The presence of more nurses in the hospital at the time of disasters can significantly improve the quality of care, and clinical outcomes of patients and disaster victims.

Acceptability and Feasibility of Geographically Explicit Ecological Momentary Assessment Among Men Who Have Sex with Men

Syphilis among men who have sex with men (MSM) has increased greatly in the past twenty years in the U.S. Geographically explicit ecological momentary assessment (GEMA), in which behaviors are geotagged and contextualized in time and space, may contribute to a greater understanding of transmission risk. The objective was to determine the acceptability and feasibility of GEMA for assessing HIV and syphilis transmission risk behaviors among a sample of MSM. Participants responded to a brief survey five times a day for two weeks. Feasibility was measured by participant recruitment, enrollment, prompts received and answered, geotagged prompts, and technical interference with data collection. Acceptability was measured by ratings of enjoyment and willingness for future participation. Summaries of five behavioral measures from the brief survey were calculated. Among the 83 participants contacted, 67.5% (56) expressed interest, 98% (55) were scheduled, and 81.8% (45) were enrolled. Participants answered 78.3% (2,277) of prompts received and 87.7% (1,998) of answered prompts were geotagged. Overall, 70.5% (31) enjoyed participating and 91.1% (41) were willing to participate in the future. Among prompts answered, missingness was low for five behavioral measures (range 0.2% (4) to 0.7% (16)). Feasibility and acceptability were high and missingness was low on behavioral measures in this MSM study population. Most participants reported that they would participate again. Future work should focus on whether GEMA improves our understanding of syphilis and HIV transmission risk.

The role of branding in the choice of a university of technology

Brand choice has historically played an important role in a wide range of industries, particularly in the private sector, where billions of Rands are invested to entice potential customers. Taking this into consideration, the purpose of this study is to investigate the effect of brand awareness and brand image on first-year student selection of a University of Technology in KwaZulu-Natal. The objectives of the study were to establish and identify the brand preference and image attributes that entice first-year students’ selection of a University of Technology (UoT). The study also examined the biographic variables of those students. To accomplish these objectives, an exploratory study using a quantitative research approach was conducted, in which questionnaires were administered to 500 first-year students at the selected Universities of Technology in KwaZulu-Natal. The study revealed that topics such as investments in brand awareness and brand image, safety and security, the caliber of staff, delays in academic programmes, student-lecturer relationships, and service delivery were identified as factors that influenced the participants' selection and willingness to recommend their institutions to potential students. Thus, the study recommends that UoTs should pay more attention to branding strategies as an agendum to ensuring institutional profitability and viability, relationship management, and human resource. Finally, the findings of this study are limited to KwaZulu-Natal and should not be extrapolated outside this region.

Development and testing of a biobanking acceptability scale: A multistage effort to add a biobank to an existing longitudinal study

BackgroundMore biobanks linked to demographic, phenotypic, and clinical data are needed to advance multiple sclerosis (MS) research; however, little is known about biobanking attitudes among persons with MS, broadly, as well as willingness of participants in an existing longitudinal study to donate biospecimens, specifically. MethodsTo assess biobanking attitudes in a cohort of MS patients in an ongoing longitudinal study, a new Biobanking Acceptability Scale (BAS) was developed, its reliability and predictive validity tested, and factors that influenced biobanking intent as well as behavior were explored. Analysis included descriptive statistics, factor analysis, Cronbach's α, and Pearson's bivariate correlation coefficients. ResultsIn 2018, 227 participants completed the 10-item BAS. Biobanking attitudes were generally positive (BAS total score, M = 38.8 out of 50; SD = 6.7), and most participants expressed willingness to donate hair (87%), saliva (85%), and/or blood (72%). In 2019, 143 participants consented to biobanking and were mailed supplies; 110 individuals provided at least one biospecimen, resulting in 110 saliva samples and 89 hair samples. The 10-item BAS displayed good internal consistency (α = 0.81). Demographic and clinical variables were not significantly associated with BAS score nor actual donation. Total BAS score was related to consent (r = 0.36, p < .001) and to actual donation of hair or saliva samples (r = 0.24, p < .01). ConclusionOverall, the participants had positive attitudes toward biobanking; the scale should be assessed in more diverse samples. The BAS predicted biobanking consent, and thus may be a useful measure to identify individuals most likely to donate biospecimens and/or identify potential barriers to biobanking that can be addressed through study design.

Developing a virtual assessment protocol for the AMPLIFI Randomized Controlled Trial due to COVID-19: From assessing participants' preference to preparing the team

BackgroundDuring the COVID-19 pandemic, in-person research assessments needed to be adapted to ensure safety of participants and staff. Participants' willingness to participate in research activities, how to prepare assessors to ensure data integrity, and the feasibility of modified protocols, were unknown. Within the AMPLIFI randomized clinical trial (RCT) for cancer survivors, we elicited participants' preferences and willingness to participate in Clinic, Home, or Virtual assessments, prepared assessors for, and implemented virtual assessments.Methods1) We conducted phone surveys of potential AMPLIFI participants; 2) Based on survey results, we modified assessments from in-person to virtual visits (VV) by videoconference. Assessors were trained and certified, i.e., assessors recorded 3 assessments that were reviewed and scored by 2 investigators. The modified protocol was proposed to 62 participants: we report numbers of those who agreed to attend VV.Results1) Survey results: Among 74 survey respondents, 44.6% preferred, 75.7% were willing to attend Clinic Visits; 32.4% preferred, 83.8% were willing to do VV; 23% preferred, 77% were willing to do Home Visits. Survivors 70+ were less likely than 50–69 years old to be willing to do VV: no other differences were noted by gender, race, rural status or education. 2) Assessment uptake: 66.1% agreed to attend VV, and of them 75.6% completed them.ConclusionDiverse research participants adapted to protocols that prioritize their safety, although older participants may be reluctant to do virtual assessments. Virtual assessments are feasible and research teams can rigorously prepare to collect quality data through them.

Solidarity with Soufra: Dividuality and joint action with Palestinian women refugees

Based on an exploratory study of Soufra, a women’s catering social enterprise in the Bourj al Barajneh Palestinian refugee camp in Beirut, we analyze how solidarity across difference can be organized. We conceptualize “difference” not in terms of “whole” individuals, but in terms of dividuals, the multiple roles and social positions that individuals occupy; this enables similarities between individuals of different ethnicities, nationalities, and statuses to become apparent. We find that, despite their extreme and protracted marginalization, Soufra does not seek to organize solidarity relationships with co-resisters joining their struggle against oppressors. Rather, they initiate exchange relationships with different others via carefully managed impressions of similar dividualities (e.g. professional cooks and businesswomen) and different dividualities (e.g. having refugee status and lacking any citizenship). These encounters provide opportunities for solidarity relationships to be created and underlying cultural predispositions to be transformed. Whether these opportunities are taken up or rejected is dependent, at least to some extent, on the willingness of participants to allow such transformations to occur.