%0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e66681 %T Effect on Response Rates of Adding a QR Code to Patient Consent Forms for Qualitative Research in Patients With Cancer: Pilot Randomized Controlled Trial %A Wyse,Rebecca %A Forbes,Erin %A Norton,Grace %A Viana Da Silva,Priscilla %A Fakes,Kristy %A Johnston,Sally Ann %A Smith,Stephen R %A Zucca,Alison %+ School of Medicine and Public Health, The University of Newcastle, University Dr, Callaghan, NSW, 2308, Australia, 61 02 40420272, rebecca.wyse@health.nsw.gov.au %K QR code %K qualitative research %K cancer %K randomized controlled trial %K RCT %K patient recruitment %K consent forms %K response rates %D 2025 %7 21.2.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: The successful conduct of health and medical research is largely dependent on participant recruitment. Effective, yet inexpensive methods of increasing response rates for all types of research are required. QR codes are now commonplace, and despite having been extensively used to recruit study participants, a search of the literature failed to reveal any randomized trial investigating the effect of adding a QR code on qualitative research response rates. Objective: This study aimed to collect data on rates of response, consent, and decline among patients with cancer, and the average time taken to respond following randomization to receive either a QR code or no QR code on the patient consent form for a qualitative research study. Methods: This was a pilot randomized controlled trial (RCT) embedded within a qualitative research study. In total, 40 eligible patients received a recruitment pack for the qualitative study, which included an information statement, a consent form, and an addressed, stamped envelope to return their consent form. Patients were randomized 1:1 to the control (standard recruitment pack only) or intervention group (standard recruitment pack including modified consent form with a QR code). Results: In total, 27 out of 40 patients (age: mean 63.0, SD 14.8 years; 45% female) responded to the consent form. A lower proportion of the QR code group (60%) responded (odd ratio [OR] 0.57, 95% CI 0.14-2.37; P=.44), compared to 75% of the standard recruitment group. However, a higher proportion of the QR group (35%) consented (OR 1.84, 95% CI 0.41-8.29; P=.43), compared to the standard recruitment group (20%). A lower proportion of the QR group (25%) declined (OR 0.34, 95% CI 0.09-1.38; P=.13) relative to the standard recruitment group (55%). The mean response time of the QR code group was 16 days (rate ratio [RR] 0.79, 95% CI 0.47-1.35; P=.39) compared to 19 days for the standard recruitment group. None of the age-adjusted analyses were statistically significant. Conclusions: This underpowered pilot study did not find any evidence that offering an option to respond through a QR code on a patient consent form for a qualitative study increased the overall patient response rate (combined rate of consent and decline). However, there was a nonsignificant trend, indicating that more patients who received the QR code consented compared to those who did not receive the QR code. This study provides useful preliminary data on the potential impact of QR codes on patient response rates to invitations to participate in qualitative research and can be used to inform fully powered RCTs. Trial Registration: OSF Registries 10.17605/OSF.IO/PJ25X; https://doi.org/10.17605/OSF.IO/PJ25X %M 39983108 %R 10.2196/66681 %U https://formative.jmir.org/2025/1/e66681 %U https://doi.org/10.2196/66681 %U http://www.ncbi.nlm.nih.gov/pubmed/39983108 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e63155 %T Heuristics Identified in Health Data–Sharing Preferences of Patients With Cancer: Qualitative Focus Group Study %A Hermansen,Anna %A Pollard,Samantha %A McGrail,Kimberlyn %A Bansback,Nick %A Regier,Dean A %+ BC Cancer Research Institute, 675 W 10th Ave, Vancouver, BC, V5Z 1L3, Canada, 1 (604) 822 2772, ajhermansen@gmail.com %K heuristics %K health data sharing %K cancer patients %K decision-making %K real-world data %K altruism %K trust %K control %K data sharing %K focus group %K precision medicine %K clinical data %K exploratory study %K qualitative %K Canada %K thematic analysis %K informed consent %K patient education %K information technology %K healthcare %K medical informatics %D 2024 %7 17.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Evaluating precision oncology outcomes requires access to real-world and clinical trial data. Access is based on consent, and consent is based on patients’ informed preferences when deciding to share their data. Decision-making is often modeled using utility theory, but a complex decision context calls for a consideration of how heuristic, intuitive thought processes interact with rational utility maximization. Data-sharing decision-making has been studied using heuristic theory, but almost no heuristic research exists in the health data context. This study explores this evidence gap, applying a qualitative approach to probe for evidence of heuristic mechanisms behind the health data-sharing preferences of those who have experienced cancer. Exploring qualitative decision-making reveals the types of heuristics used and how they are related to the process of decision-making to better understand whether consent mechanisms should consider nonrational processes to better serve patient decision-making. Objective: This study aimed to explore how patients with cancer use heuristics when deciding whether to share their data for research. Methods: The researchers conducted a focus group study of Canadians who have experienced cancer. We recruited participants through an online advertisement, screening individuals based on their ability to increase demographic diversity in the sample. We reviewed the literature on data-sharing platforms to develop a semistructured topic guide on concerns about data sharing, incentives to share, and consent and control. Focus group facilitators led the open-ended discussions about data-sharing preferences that revealed underlying heuristics. Two qualitative analysts coded transcripts using a heuristic framework developed from a review of the literature. Transcripts were analyzed for heuristic instances which were grouped according to sociocultural categories. Using thematic analysis, the analysts generated reflexive themes through norming sessions and consultations. Results: A total of 3 focus groups were held with 19 participants in total. The analysis identified 12 heuristics underlying intentions to share data. From the thematic analysis, we identified how the heuristics of social norms and community building were expressed through altruism; the recognition, reputation, and authority heuristics led to (dis)trust in certain institutions; the need for security prompted the illusion of control and transparency heuristics; and the availability and affect heuristics influenced attitudes around risk and benefit. These thematic relationships all had impacts on the participants’ intentions to share their health data. Conclusions: The findings provide a novel qualitative understanding of how health data–sharing decisions and preferences may be based on heuristic processing. As patients consider the extent of risks and benefits, heuristic processes influence their assessment of anticipated outcomes, which may not result in rational, truly informed consent. This study shows how considering heuristic processing when designing current consent mechanisms opens up the opportunity for more meaningful and realistic interactions with the complex decision-making context. %M 39689309 %R 10.2196/63155 %U https://www.jmir.org/2024/1/e63155 %U https://doi.org/10.2196/63155 %U http://www.ncbi.nlm.nih.gov/pubmed/39689309 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e56048 %T Exploring Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials: Cross-Sectional Analysis of Baseline Data From the mychoice Study %A Hoadley,Ariel %A Fleisher,Linda %A Kenny,Cassidy %A Kelly,Patrick JA %A Ma,Xinrui %A Wu,Jingwei %A Guerra,Carmen %A Leader,Amy E %A Alhajji,Mohammed %A D’Avanzo,Paul %A Landau,Zoe %A Bass,Sarah Bauerle %+ Department of Social and Behavioral Sciences, Temple University College of Public Health, 9th Fl, 1301 Cecil B Moore Ave, Philadelphia, PA, 19122, United States, 1 215 204 0377, ariel.hoadley@temple.edu %K oncology clinical trial %K cancer %K decision-making %K racial disparity %K medical mistrust %D 2024 %7 30.9.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity. Objective: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process. Methods: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non–Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups. Results: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non–Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non–Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables. Conclusions: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients. %M 39348891 %R 10.2196/56048 %U https://cancer.jmir.org/2024/1/e56048 %U https://doi.org/10.2196/56048 %U http://www.ncbi.nlm.nih.gov/pubmed/39348891 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e48516 %T Measuring Relationship Influences on Romantic Couples’ Cancer-Related Behaviors During the COVID-19 Pandemic: Protocol for a Longitudinal Online Study of Dyads and Cancer Survivors %A Bowers,Jennifer M %A Huelsnitz,Chloe O %A Dwyer,Laura A %A Gibson,Laurel P %A Agurs-Collins,Tanya %A Ferrer,Rebecca A %A Acevedo,Amanda M %+ Behavioral Research Program, National Cancer Institute, National Institutes of Health, 9609 Medical Center Dr, Rockville, MD, 20850, United States, 1 2402765478, amanda.acevedo@nih.gov %K cancer prevention %K COVID-19 %K risk perceptions %K dyads %K romantic relationships %K cancer %K oncology %K survivor %K survivors %K dyad %K spouse %K spousal %K partner %K health behavior %K health behaviors %K cohabiting %K cohabit %K study design %K recruit %K recruitment %K methodology %K methods %K enrol %K enrolment %K enroll %K enrollment %D 2024 %7 31.7.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Research has established the effects of romantic relationships on individuals’ morbidity and mortality. However, the interplay between relationship functioning, affective processes, and health behaviors has been relatively understudied. During the COVID-19 pandemic, relational processes may influence novel health behaviors such as social distancing and masking. Objective: We describe the design, recruitment, and methods of the relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study. This study was developed to understand how relational and affective processes influence romantic partners’ engagement in cancer prevention behaviors as well as health behaviors introduced or exacerbated by the COVID-19 pandemic. Methods: The relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study used online survey methods to recruit and enroll 2 cohorts of individuals involved in cohabiting romantic relationships, including 1 cohort of dyads (n=223) and 1 cohort of cancer survivors (n=443). Survey assessments were completed over 2 time points that were 5.57 (SD 3.14) weeks apart on average. Health behaviors assessed included COVID-19 vaccination and social distancing, physical activity, diet, sleep, alcohol use, and smoking behavior. We also examined relationship factors, psychological distress, and household chaos. Results: Data collection occurred between October 2021 and August 2022. During that time, a total of 926 participants were enrolled, of which about two-thirds were from the United Kingdom (n=622, 67.8%) and one-third were from the United States (n=296, 32.2%); about two-thirds were married (n=608, 66.2%) and one-third were members of unmarried couples (n=294, 32%). In cohorts 1 and 2, the mean age was about 34 and 50, respectively. Out of 478 participants in cohort 1, 19 (4%) identified as Hispanic or Latino/a, 79 (17%) as non-Hispanic Asian, 40 (9%) as non-Hispanic Black or African American, and 306 (64%) as non-Hispanic White; 62 (13%) participants identified their sexual orientation as bisexual or pansexual, 359 (75.1%) as heterosexual or straight, and 53 (11%) as gay or lesbian. In cohort 2, out of 440 participants, 13 (3%) identified as Hispanic or Latino/a, 8 (2%) as non-Hispanic Asian, 5 (1%) as non-Hispanic Black or African American, and 398 (90.5%) as non-Hispanic White; 41 (9%) participants identified their sexual orientation as bisexual or pansexual, 384 (87.3%) as heterosexual or straight, and 13 (3%) as gay or lesbian. The overall enrollment rate for individuals was 66.14% and the overall completion rate was 80.08%. Conclusions: We discuss best practices for collecting online survey data for studies examining relationships and health, challenges related to the COVID-19 pandemic, recruitment of underrepresented populations, and enrollment of dyads. Recommendations include conducting pilot studies, allowing for extra time in the data collection timeline for marginalized or underserved populations, surplus screening to account for expected attrition within dyads, as well as planning dyad-specific data quality checks. International Registered Report Identifier (IRRID): DERR1-10.2196/48516 %M 39083795 %R 10.2196/48516 %U https://www.researchprotocols.org/2024/1/e48516 %U https://doi.org/10.2196/48516 %U http://www.ncbi.nlm.nih.gov/pubmed/39083795 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e57529 %T Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach %A Wang,Yan %A DeVito Dabbs,Annette %A Thomas,Teresa Hagan %A Campbell,Grace %A Donovan,Heidi %+ Department of Health & Community Systems, School of Nursing, University of Pittsburgh, 3500 Victoria Street, Victoria Building, Pittsburgh, PA, 15261, United States, 1 14126261172, yaw75@pitt.edu %K engagement %K digital health intervention %K framework %K symptom management %K eHealth %K gynecological cancer %D 2024 %7 22.7.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. Objective: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework’s ability to describe and categorize engagement using Nurse WRITE as an example. Methods: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures—total count of socio-affective engagement classes (eg, sharing personal experience) and total word count—and 2 cognitive engagement measures—total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data—the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. Results: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses’ queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. Conclusions: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants’ engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy. %M 39037757 %R 10.2196/57529 %U https://formative.jmir.org/2024/1/e57529 %U https://doi.org/10.2196/57529 %U http://www.ncbi.nlm.nih.gov/pubmed/39037757 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 12 %P e31860 %T Increasing Participation Rates in Germany’s Skin Cancer Screening Program (HELIOS): Protocol for a Mixed Methods Study %A Steeb,Theresa %A Heppt,Markus V %A Erdmann,Michael %A Wessely,Anja %A Klug,Stefanie J %A Berking,Carola %+ Department of Dermatology, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-Nuremberg, Ulmenweg 18, Erlangen, 91054, Germany, 49 1318545852, theresa.steeb@uk-erlangen.de %K skin cancer %K melanoma %K squamous cell carcinoma %K basal cell carcinoma %K screening %K early detection %K focus group %K mixed methods %K cross-sectional study %K prevention %D 2021 %7 13.12.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: In 2008, a nationwide skin cancer screening (SCS) program was implemented in Germany. However, participation rates remain low. Objective: The overall objective of the HELIOS study is to identify subgroup-specific invitation and communication strategies to increase informed SCS participation in Germany. Methods: Focus group discussions will be performed in Erlangen, Germany, to explore potential invitation and communication strategies as well as possible barriers and motivating factors to participate in SCS. Male and female patients of different age groups who have already been diagnosed with skin cancer, as well as participants without a prior diagnosis of skin cancer, will be invited. Based on these results, an online questionnaire will be developed to identify subgroup-specific invitation strategies. A random sample of 2500 persons from the general population aged >35 years from the Munich area will be contacted to complete the questionnaire. Besides descriptive analysis, multinomial logistic regression will be performed. Additionally, a cluster analysis will be conducted to discover patterns or similarities among the participants. Results: Recruitment for the focus group studies started in February 2021 and is ongoing. As of August 2021, we have enrolled 39 participants. We expect to end enrollment in the qualitative study in September 2021 and to finish the analysis in December 2021. The second part of the study will then start in January 2022. Conclusions: The results of this project will enable us to derive improved and more efficient invitation and communication strategies for SCS. These may be implemented in the future to facilitate increased SCS uptake and early skin cancer detection. International Registered Report Identifier (IRRID): DERR1-10.2196/31860 %M 34898465 %R 10.2196/31860 %U https://www.researchprotocols.org/2021/12/e31860 %U https://doi.org/10.2196/31860 %U http://www.ncbi.nlm.nih.gov/pubmed/34898465 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 1 %P e21851 %T Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE %A Calaminus,Gabriele %A Baust,Katja %A Berger,Claire %A Byrne,Julianne %A Binder,Harald %A Casagranda,Leonie %A Grabow,Desiree %A Grootenhuis,Martha %A Kaatsch,Peter %A Kaiser,Melanie %A Kepak,Tomas %A Kepáková,Kateřina %A Kremer,Leontien C M %A Kruseova,Jarmila %A Luks,Ales %A Spix,Claudia %A van den Berg,Marleen %A van den Heuvel-Eibrink,Marry M M %A van Dulmen-den Broeder,Eline %A Kuonen,Rahel %A Sommer,Grit %A Kuehni,Claudia %+ Department of Paediatric Haematology and Oncology, University Hospital Bonn, Venusberg-Campus 1, Bonn, 53127, Germany, 49 228 287 ext 33389, gabriele.calaminus@ukbonn.de %K children %K adolescents %K neoplasms %K quality of life %K health status %K Europe %K epidemiology %K survivors of childhood cancer %D 2021 %7 25.1.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Survival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL). Objective: The project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. Methods: A total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. Results: We identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. Conclusions: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. International Registered Report Identifier (IRRID): RR1-10.2196/21851 %M 33492237 %R 10.2196/21851 %U http://www.researchprotocols.org/2021/1/e21851/ %U https://doi.org/10.2196/21851 %U http://www.ncbi.nlm.nih.gov/pubmed/33492237 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 1 %P e7850 %T Potential of Using Twitter to Recruit Cancer Survivors and Their Willingness to Participate in Nutrition Research and Web-Based Interventions: A Cross-Sectional Study %A Keaver,Laura %A McGough,Aisling %A Du,Mengxi %A Chang,Winnie %A Chomitz,Virginia %A Allen,Jennifer D %A Attai,Deanna J %A Gualtieri,Lisa %A Zhang,Fang Fang %+ Friedman School of Nutrition Science and Policy, Tufts University, 150 Harrison Ave, Boston, MA, 02111, United States, 1 6176363704, fang_fang.zhang@tufts.edu %K social media %K nutrition survey %K cancer survivors %D 2019 %7 28.5.2019 %9 Original Paper %J JMIR Cancer %G English %X Background: Social media is rapidly changing how cancer survivors search for and share health information and can potentially serve as a cost-effective channel to reach cancer survivors and invite them to participate in nutrition intervention programs. Objective: This study aimed to assess the feasibility of using Twitter to recruit cancer survivors for a web-based survey and assess their willingness to complete web-based nutrition surveys, donate biospecimens, and to be contacted about web-based nutrition programs. Methods: We contacted 301 Twitter accounts of cancer organizations, advocates, and survivors to request assistance promoting a web-based survey among cancer survivors. The survey asked respondents whether they would be willing to complete web-based nutrition or lifestyle surveys, donate biospecimens, and be contacted about web-based nutrition programs. Survey promotion rate was assessed by the percentage of Twitter accounts that tweeted the survey link at least once. Survey response was assessed by the number of survey respondents who answered at least 85% (26/30). We compared the characteristics of cancer survivors who responded to this survey with those who participated in the National Health and Nutrition Examination Survey (NHANES) 1999-2010 and evaluated factors associated with willingness to complete web-based surveys, donate biospecimens, and be contacted to participate in web-based nutrition programs among those who responded to the social media survey. Results: Over 10 weeks, 113 Twitter account owners and 165 of their followers promoted the survey, and 444 cancer survivors provided complete responses. Two-thirds of respondents indicated that they would be willing to complete web-based nutrition or lifestyle surveys (297/444, 67.0%) and to be contacted to participate in web-based nutrition interventions (294/444, 66.2%). The percentage of respondents willing to donate biospecimens were 59.3% (263/444) for oral swab, 52.1% (231/444) for urine sample, 37.9% (168/444) for blood sample, and 35.6% (158/444) for stool sample. Compared with a nationally representative sample of 1550 cancer survivors in NHANES, those who responded to the social media survey were younger (53.1 years vs 60.8 years; P<.001), more likely to be female (93.9% [417/444] vs 58.7% [909/1550]; P<.001), non-Hispanic whites (85.4% [379/444] vs 64.0% [992/1550]; P<.001), to have completed college or graduate school (30.1 [133/444] vs 19.9% [308/444]; P<.001), and to be within 5 years of their initial diagnosis (55.2% [244/444] vs 34.1% [528/1550]; P<.001). Survivors younger than 45 years, female, and non-Hispanic whites were more willing to complete web-based nutrition surveys than older (65+ years), male, and racial or ethnic minority survivors. Non-Hispanic whites and breast cancer survivors were more willing to donate biospecimens than those with other race, ethnicity or cancer types. Conclusions: Twitter could be a feasible approach to recruit cancer survivors into nutrition research and web-based interventions with potentially high yields. Specific efforts are needed to recruit survivors who are older, male, racial and ethnic minorities, and from socioeconomically disadvantaged groups when Twitter is used as a recruitment method. %M 31140436 %R 10.2196/cancer.7850 %U http://cancer.jmir.org/2019/1/e7850/ %U https://doi.org/10.2196/cancer.7850 %U http://www.ncbi.nlm.nih.gov/pubmed/31140436 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 2 %N 2 %P e9 %T Online Versus Telephone Methods to Recruit and Interview Older Gay and Bisexual Men Treated for Prostate Cancer: Findings from the Restore Study %A Rosser,BR Simon %A Capistrant,Benjamin %+ University of Minnesota, Division of Epidemiology and Community Health, 1300 S. 2nd. St., #300, Minneapolis, MN, 55410, United States, 1 612 624 0358, rosser@umn.edu %K Qualitative research %K Aged %K Gays %D 2016 %7 19.07.2016 %9 Short Paper %J JMIR Cancer %G English %X Background: Recently, researchers have faced the challenge of conflicting recommendations for online versus traditional methods to recruit and interview older, sexual minority men. Older populations represent the cohort least likely to be online, necessitating the use of traditional research methods, such as telephone or in-person interviews. By contrast, gay and bisexual men represent a population of early adopters of new technology, both in general and for medical research. In a study of older gay and bisexual men with prostate cancer, we asked whether respondents preferred online versus offline methods for data collection. Given the paucity of research on how to recruit older gay and bisexual men in general, and older gay and bisexual men with prostate cancer in particular, we conducted an observational study to identify participant preferences when participating in research studies. Objective: To test online versus offline recruitment demographic data collection, and interview preferences of older gay and bisexual men with prostate cancer. Methods: Email blasts were sent from a website providing support services for gay and bisexual men with prostate cancer, supplemented with an email invitation from the web-host. All invitations provided information via the study website address and a toll-free telephone number. Study tasks included respondents being screened, giving informed consent, completing a short survey collecting demographic data, and a 60-75 minute telephone or Internet chat interview. All materials stressed that enrollees could participate in each task using either online methods or by telephone, whichever they preferred. Results: A total of 74 men were screened into the study, and 30 were interviewed. The average age of the participants was 63 years (standard deviation 6.9, range 48-75 years), with most residing in 14 American states, and one temporarily located overseas. For screening, consent, and the collection of demographic data, 97% (29/30) of the participants completed these tasks using online methods. For the interview, 97% (29/30) chose to be interviewed by telephone, rather than Internet chat. Conclusions: Older gay and bisexual men, when given choices, appear to prefer a mixed methods approach to qualitative investigations. For most aspects of the study, the older men chose online methods; the exception was the interview, in which case almost all preferred telephone. We speculate that a combination of the deeply personal nature of the topic (sexual effects of prostate cancer treatment), unfamiliarity with online chat, and possibly the subject burden involved in extensive typing contributed to the preference of telephone versus online chat. Recruitment of older men into this study showed good geographic diversity. We recommend that other qualitative researchers consider a mixed methods approach when recruiting older populations online. %M 28410183 %R 10.2196/cancer.5578 %U http://cancer.jmir.org/2016/2/e9/ %U https://doi.org/10.2196/cancer.5578 %U http://www.ncbi.nlm.nih.gov/pubmed/28410183 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e11 %T Effect of Web-Based Versus Paper-Based Questionnaires and Follow-Up Strategies on Participation Rates of Dutch Childhood Cancer Survivors: A Randomized Controlled Trial %A Kilsdonk,Ellen %A van Dulmen-den Broeder,Eline %A van der Pal,Helena J %A Hollema,Nynke %A Kremer,Leontien C %A van den Heuvel-Eibrink,Marry M %A van Leeuwen,Flora E %A Jaspers,Monique W %A van den Berg,Marleen H %+ Centre for Human Factors Engineering of interactive Health Information Technology (HIT-lab), Department of Medical Informatics, Academic Medical Center, PO Box 22660, Amsterdam, 1100 DD, Netherlands, 31 205666204, e.kilsdonk@amc.uva.nl %K childhood cancer survivors %K follow-up strategies %K participation rates %K questionnaires %K questionnaire mode %D 2015 %7 24.11.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Questionnaires are widely used in survey research, especially in cohort studies. However, participation in questionnaire studies has been declining over the past decades. Because high participation rates are needed to limit the risk of selection bias and produce valid results, it is important to investigate invitation strategies which may improve participation. Objectives: The purpose of this study is to investigate the effect of Web-based versus paper-based questionnaires on participation rates in a questionnaire survey on late effects among childhood cancer survivors (CCSs). Methods: A total of 750 CCSs were randomized across 3 study arms. The initial invitation in study arms 1 and 2 consisted of a Web-based questionnaire only, whereas in study arm 3 this invitation was complemented with a paper-based version of the questionnaire. The first postal reminder, sent to the nonresponding CCSs in all 3 study arms, consisted of either a reminder letter only (study arms 1 and 3) or a reminder letter complemented with a paper-based questionnaire (study arm 2). The second postal reminder was restricted to CCSs in study arms 1 and 2, with only those in study arm 1 also receiving a paper-based questionnaire. CCSs in study arm 3 received a second reminder by telephone instead of by mail. In contrast to CCSs in study arm 3, CCSs in study arms 1 and 2 received a third reminder, this time by telephone. Results: Overall, 58.1% (436/750) of the CCSs participated in the survey. Participation rates were equal in all 3 study arms with 57.4% (143/249) in arm 1, 60.6% (152/251) in arm 2, and 56.4% (141/250) in arm 3 (P=.09). Participation rates of CCSs who received an initial invitation for the Web-based questionnaire only and CCSs who received an invitation to complete either a paper-based or Web-based questionnaire did not differ (P=.55). After the first postal reminder, participation rates of CCSs invited for the Web-based questionnaire only also did not differ compared with CCSs invited for both the Web-based and paper-based questionnaires (P=.48). In general, CCSs preferred the paper-based over the Web-based questionnaire, and those completing the paper-based questionnaire were more often unemployed (P=.004) and lower educated (P<.001). Conclusion: Invitation strategies offering a Web-based questionnaire without a paper-based alternative at first invitation can be used without compromising participation rates of CCS. Offering the choice between paper- and Web-based questionnaires seems to result in the highest accrual participation rate. Future research should look into the quality of the data delivered by both questionnaires filled in by respondents themselves. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 84711754; http://www.controlled-trials.com/ISRCTN84711754 (Archived by WebCite at http://www.webcitation.org/6c9ZB8paX) %M 28410161 %R 10.2196/cancer.3905 %U http://cancer.jmir.org/2015/2/e11/ %U https://doi.org/10.2196/cancer.3905 %U http://www.ncbi.nlm.nih.gov/pubmed/28410161