Stroke survivors' preferences regarding study participation in rehabilitation research.

BACKGROUND: To pursue high quality research, successful participant recruitment is essential, but recruitment rates are often low. This is specifically true in target populations with impairments, for instance, among stroke survivors. Previous studies focusing on recruitment have mainly relied on information from professionals, and there is therefore a need to contribute with new methodological insights to how potential rehabilitation research participants describe their interest and preferences to participate in research. The purpose of this study was to generate knowledge about stroke survivors' interest in participating in rehabilitation research, reasons for being interested or not, and preferred forms and foci of rehabilitation interventions. An additional aim was to describe preferences regarding survey administration modes and processes for recruitment to studies. METHOD: This cross-sectional study recruited Swedish residents who had sustained a stroke, initially by using advertisement on the National Stroke Association's website, flyers posted at local occupational and physical therapy offices and at local stroke/senior organization meetings. Secondly, participants were recruited through a local stroke register. The survey, administered either in a paper form returned by postal mail; online or as a phone interview with 128 stroke survivors. RESULTS: Most of the participants were interested in participating in rehabilitation research, particularly younger persons (p = 0.001) and those closer to stroke onset (p = 0.047). Contribution to research, possibility to try new rehabilitation interventions and meeting others in the same situation were reasons that attracted an interest to participate. Other important aspects were related to motivation, individual needs, as well as how skilled the people who provided the intervention were. Participants preferred group-based programs, and programs focusing on regaining lost functions were highly requested. A majority wanted to be contacted through postal mail (70%) and most of them (90%) used the paper form to respond to the survey. CONCLUSIONS: A range of personal and external aspects, including challenges related to digitized administration modes, should be considered to achieve high participation rates in rehabilitation research targeting stroke survivors. The importance of addressing individual needs and prerequisites in an individualized manner should not be underestimated and might be a useful strategy to recruitment success.

Associations between interim patient-reported outcome measures and functional status at discharge from rehabilitation for non-specific lumbar impairments.

PURPOSE: Identify impact of frequency and timing of interim Patient-Reported Outcome Measures (PROMs) assessments during episodes of care for rehabilitation services in outpatient clinical settings on functional status (FS) outcomes at discharge for patients with low back pain. METHODS: FS outcomes of patients who had no interim PROMs were compared to outcomes of six patient groups defined by interim timing (early, mid, late) and frequency (1, 2 or more). For each comparison, patients were matched using propensity score matching for variables known to be associated with FS outcomes and for episode duration (days) and number of visits. FS was assessed using the lumbar computerized adaptive test (LCAT) where scores range from 0 to 100 with higher scores representing better physical function. RESULTS: A sample of 140,336 patients was considered for matching (mean age = 58 [SD = 17] range 18-89; 60% females) with 83,101 patients (59%) having no interim PROMs. Patients who had only one interim PROM, administered during early (first 2 weeks), mid (weeks 3-4), or late (week 5 or later) timing, had 4.6, 2.7, and 1.0 additional FS score points at discharge compared to those without an interim PROM, respectively (p < 0.001). Having two or more interim PROMs was associated with an additional 1.2 FS points compared to having only one interim assessment, but only if the first interim was administered early. CONCLUSIONS: Optimal utilization of interim PROM assessment during clinical practice to enhance treatment outcomes was related to administering the first interim PROM within the first 2 weeks after the initial evaluation.

Uncontrolled Web-based administration of surveys on factual health-related knowledge: a randomized study of untimed versus timed quizzing.

BACKGROUND: Health knowledge and literacy are among the main determinants of health. Assessment of these issues via Web-based surveys is growing continuously. Research has suggested that approximately one-fifth of respondents submit cribbed answers, or cheat, on factual knowledge items, which may lead to measurement error. However, little is known about methods of discouraging cheating in Web-based surveys on health knowledge. OBJECTIVE: This study aimed at exploring the usefulness of imposing a survey time limit to prevent help-seeking and cheating. METHODS: On the basis of sample size estimation, 94 undergraduate students were randomly assigned in a 1:1 ratio to complete a Web-based survey on nutrition knowledge, with or without a time limit of 15 minutes (30 seconds per item); the topic of nutrition was chosen because of its particular relevance to public health. The questionnaire consisted of two parts. The first was the validated consumer-oriented nutrition knowledge scale (CoNKS) consisting of 20 true/false items; the second was an ad hoc questionnaire (AHQ) containing 10 questions that would be very difficult for people without health care qualifications to answer correctly. It therefore aimed at measuring cribbing and not nutrition knowledge. AHQ items were somewhat encyclopedic and amenable to Web searching, while CoNKS items had more complex wording, so that simple copying/pasting of a question in a search string would not produce an immediate correct answer. RESULTS: A total of 72 of the 94 subjects started the survey. Dropout rates were similar in both groups (11%, 4/35 and 14%, 5/37 in the untimed and timed groups, respectively). Most participants completed the survey from portable devices, such as mobile phones and tablets. To complete the survey, participants in the untimed group took a median 2.3 minutes longer than those in the timed group; the effect size was small (Cohen's r=.29). Subjects in the untimed group scored significantly higher on CoNKS (mean difference of 1.2 points, P=.008) and the effect size was medium (Cohen's d=0.67). By contrast, no significant between-group difference in AHQ scores was documented. Unexpectedly high AHQ scores were recorded in 23% (7/31) and 19% (6/32) untimed and timed respondents, respectively, very probably owing to "e-cheating". CONCLUSIONS: Cribbing answers to health knowledge items in researcher-uncontrolled conditions is likely to lead to overestimation of people's knowledge; this should be considered during the design and implementation of Web-based surveys. Setting a time limit alone may not completely prevent cheating, as some cheats may be very fast in Web searching. More complex and contextualized wording of items and checking for the "findability" properties of items before implementing a Web-based health knowledge survey may discourage help-seeking, thus reducing measurement error. Studies with larger sample sizes and diverse populations are needed to confirm our results.

Recruiting and Surveying Catholic Parishes for Cancer Control Initiatives: Lessons Learned From the CRUZA Implementation Study.

BACKGROUND: We describe activities undertaken to conduct organizational surveys among faith-based organizations in Massachusetts as part of a larger study designed to promote parish-based cancer control programs for Latinos. METHOD: Catholic parishes located in Massachusetts that provided Spanish-language mass were eligible for study participation. Parishes were identified through diocesan records and online directories. Prior to parish recruitment, we implemented a variety of activities to gain support from Catholic leaders at the diocesan level. We then recruited individual parishes to complete a four-part organizational survey, which assessed (A) parish leadership, (B) financial resources, (C) involvement in Hispanic Ministry, and (D) health and social service offerings. Our goal was to administer each survey component to a parish representatives who could best provide an organizational perspective on the content of each component (e.g., A = pastors, B = business managers, C = Hispanic Ministry leaders, and D = parish nurse or health ministry leader). Here, we present descriptive statistics on recruitment and survey administration processes. RESULTS: Seventy-five percent of eligible parishes responded to the survey and of these, 92% completed all four components. Completed four-part surveys required an average of 16.6 contact attempts. There were an average of 2.1 respondents per site. Pastoral staff were the most frequent respondents (79%), but they also required the most contact attempts (M = 9.3, range = 1-27). While most interviews were completed by phone (71%), one quarter were completed during in-person site visits. CONCLUSIONS: We achieved a high survey completion rate among organizational representatives. Our lessons learned may inform efforts to engage and survey faith-based organizations for public health efforts.

Enhancing Response Rates in Web-Based Surveys: The Impact of Direct Participant Contact.

Achieving a high participation rate is a common challenge in healthcare research based on web-based surveys. A study on local anesthetic systemic toxicity awareness and usage among medical practitioners at two Swiss university hospitals encountered resistance in obtaining personal email addresses from Heads of Departments. Participants were therefore divided into two groups: those who were directly invited via email (personal invitation group) and those who received a generic link through intermediaries (generic link group). The latter group was eventually excluded from survey data analysis. To determine whether one method of survey administration was more effective than another, we carried out a retrospective analysis of response rates and the proportion of new questionnaires completed after initial invitation and subsequent reminders. The results showed significantly higher response rates in the personal invitation group (40.2%, 313/779) compared to the generic link group (25.3%, 22/87), emphasizing the effectiveness of personal invitations on response rate (+14.9%, p = 0.007). The personal invitation group consistently yielded a higher number of completed questionnaires following the initial invitation and each reminder. The method of survey administration can greatly influence response rates and should be acknowledged as a quality criterion when conducting web-based surveys.

Survey Methodology for Data Collection and Analysis in Nutrition and Dietetics Research.

This article is part of a series of articles in the Journal of the Academy of Nutrition and Dietetics exploring the importance of research design, epidemiological methods, and statistical analysis as applied to nutrition and dietetics research. The purpose of this ongoing statistical portfolio is to assist registered dietitian nutritionists and nutrition and dietetic technicians, registered with interpreting nutrition research and applying scientific principles to produce high-quality data analysis. A survey is a systematic method for collecting reportable information on a topic of interest. Developing, adapting, and conducting survey research is a complex process; its aim is to collect accurate and useful data for the intended purpose and context. This article, which accompanies a companion article on electronic survey research, is an overview of survey methodology for data collection and analysis in nutrition and dietetics research. Its purpose is to highlight the general principles and components of survey development and survey administration that would maximize the validity of the data obtained. The goal is to provide a practical guide on the design and implementation of a survey as a method for data collection. Supporting figures are provided for use in direct application by practitioners and students.

Father's perceptions and care involvement for their very preterm infants at French neonatal intensive care units.

Objectives: We aimed to evaluate (1) fathers' perceptions and care involvement for their very premature infants and their views of the hospitalization period based on parental reports and (2) their evolution over time. Methods: We used an online parental survey to assess answers from parents of very preterm infants who were successfully discharged from French neonatal units. We analysed answers from February 2014 to January 2019 to an anonymous internet-based survey from the GREEN committee of the French Neonatal Society. Responses were compared for period 1 (P1, 1998 to 2013) and period 2 (P2, 2014 to 2019). Results: We analyzed 2,483 surveys, 124 (5%) from fathers and 2,359 (95%) from mothers. At birth, 1,845 (80%) fathers were present in the hospital, but only 879 (38%) were near the mother. The presence of fathers in the NICU increased from P1 to P2 (34.5% vs. 43.1%, p = 0.03). Nearly two thirds of fathers accompanied their infants during transfer to the NICU (1,204 fathers, 60.6%). Fathers and mothers had similar perceptions regarding relationships with caregivers and skin-to-skin contact with their infants. However, more fathers than mothers felt welcome in the NICU and in care involvement regarding requests for their wishes when they met their infant (79% vs. 60%, p = 0.02) and in the presentation of the NICU (91% vs. 76%; p = 0.03). Mothers and fathers significantly differed in the caring procedures they performed (p = 0.01), procedures they did not perform but wanted to perform (p < 0.001), and procedures they did not perform and did not want to perform (p < 0.01). Conclusion: Most fathers were present at the births of their very preterm infants, but fewer fathers were near the mother at this time. Less than two thirds of fathers accompanied their infants to the NICU. There should be further changes to better meet the specific needs of the fathers of infants requiring care in the NICU. Continuing assessment with an online questionnaire may be useful to monitor changes over time in father's involvement in NICUs.

Design, deployment, and usability of a mobile system for cardiovascular health monitoring within the electronic Framingham Heart Study.

Background: The electronic Framingham Heart Study (eFHS) is an ongoing nested study, which includes FHS study participants, examining associations between health data from mobile devices with cardiovascular risk factors and disease. Objective: To describe application (app) design, report user characteristics, and describe usability and survey response rates. Methods: Eligible FHS participants were consented and offered a smartwatch (Apple Watch), a digital blood pressure (BP) cuff, and the eFHS smartphone app for administering surveys remotely. We assessed usability of the new app using 2 domains (functionality, aesthetics) of the Mobile App Rating Scale (MARS) and assessed survey completion rates at baseline and 3 months. Results: A total of 196 participants were recruited using the enhanced eFHS app. Of these, 97 (49.5%) completed the MARS instrument. Average age of participants was 53 ± 9 years, 51.5% were women, and 93.8% were white. Eighty-six percent of participants completed at least 1 measure on the baseline survey, and 50% completed the 3-month assessment. Overall subjective score of the app was 4.2 ± 0.7 on a scale from 1 to 5 stars. Of those who shared their health data with others, 46% shared their BP and 7.7% shared their physical activity with a health care provider. Conclusion: Participants rated the new, enhanced eFHS app positively overall. Mobile app survey completion rates were high, consistent with positive in-app ratings from participants. These mobile data collection modalities offer clinicians new opportunities to engage in conversations about health behaviors.

Improving Response Rates and Representation of Hard-to-Reach Groups in Family Experience Surveys.

OBJECTIVE: Most US hospitals conduct patient experience surveys by mail or telephone after discharge to assess patient/family centeredness of care. Pediatric response rates are usually very low, especially for black, Latino, and low-income respondents. We investigated whether day of discharge surveying using tablets improves response rates and respondent representativeness. METHODS: This was a quasi-experimental study of parents of patients discharged from 4 units of a children's hospital. Parents were assigned to receive the Child Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) via an audio-enabled tablet before discharge or via mail at approximately 1 week postdischarge. Intervention and control conditions alternated by week. We compared response rates, child/respondent characteristics, and mean top-box scores between tablet and mail only arms. RESULTS: Administering Child HCAHPS on a tablet was administratively feasible and did not interfere with the discharge process (median completion time, 12.4 minutes). The response rate was 71.1% (424 of 596) for tablet versus 16.3% (96 of 588) for mail only. Although the tablet response rate was higher in every subgroup, tablet respondents were more likely to be fathers (20.4% vs 6.4%; P = .006), more likely to have a high school education or less (17.5% vs 8.4%; P = .002), less likely to be white (56.8% vs 71.9%; P = .006), and more likely to be publicly insured (31.4% vs 19.8%; P = .02). Tablet scores were significantly higher than mail only scores for 3 of 17 measures. CONCLUSIONS: The response rate for day of discharge tablet survey administration was >4-fold higher than with single-wave mail-only administration, with greater participation of hard-to-reach groups. These findings suggest tablet administration before discharge shows great promise for real-time feedback and QI and may transform the field of inpatient survey administration.

Patient Satisfaction Surveys in the Outpatient Clinic Setting: The Variability of Response With Positively or Negatively Toned Questions.

The purpose of this study was to determine whether a patient satisfaction survey in the outpatient clinic setting using questions with either a positive or negative tone would produce consistent responses. This was a prospective study using a 20-question paper survey delivered to medical students who were asked to rate on a scale of 1 to 10 to what degree they either agree or disagree with statements regarding their most recent personal outpatient clinic health care visit (any medical specialty). The same survey was administered again through an e-mail link 1 week later. One hundred fifty (77%) students completed the 20-item survey and 53 (35%) of the participating students completed the follow-up e-mail survey. Seven of the 10 question pairs on the paper survey revealed statistically significant differences in responses based on tone, with greater values for disagreement with negatively toned questions than values representing agreement with positive-toned questions. The match rates for similar questions posed on the paper survey and then the e-mail survey 1 week later ranged between 27.8% and 56.6%. This study demonstrated that, with an outpatient health care patient satisfaction survey, disagreement with a negative-toned question was stronger than agreement with a positive-toned question. There was poor correlation between survey responses when first posed on a paper survey and then repeated on a digital survey 1 week later. These findings suggest that the wording of survey questions may affect responses and that survey answers change with time and across delivery platforms.

Survey response burden in caregivers of civilians and service members/veterans with traumatic brain injury.

PURPOSE: Caregivers have expressed interest in survey research, yet there is limited information available about survey response burden, ie, the time, effort, and other demands needed to complete the survey. This may be particularly important for caregivers due to excessive time demands and/or stress associated with caregiving. METHOD: Survey response burden indicators were collected as part of a study to develop and validate a patient-reported outcome (PRO) measurement system for caregivers of civilians or service members/veterans (SMVs) with traumatic brain injury (TBI). RESULTS: Compared to the group caring for civilians (n=335), the group caring for SMVs (n=123) was comprised of all women, was younger, had fewer racial/ethnic minorities, had more education, and nearly all were the spouse of a person with TBI. All PRO outcomes were poorer for the group caring for SMVs. Although the caregivers of SMVs had poorer PRO outcomes compared to caregivers of civilians, they were more likely to report that they would recommend the study to others. Caregivers with less education and those from racial/ethnic minority groups had more favorable ratings of their study participation experience, even though they needed more help using the computer or answering the questions. CONCLUSION: The results of this study provide useful information about the acceptability of computer-based survey administration for caregiver PROs. PROs are widely gathered in clinical and health services research and could be particularly useful in TBI care programs. More data are needed to determine the best assessment strategies for individuals with lower education who are likely to require some assistance completing PRO surveys. Studies evaluating PROs administered by multimedia platforms could help researchers and clinicians plan the best strategies for assessing health-related quality of life in TBI caregivers.

Prevalence and factors associated with use of hookah tobacco among young adults in the U.S.

INTRODUCTION: Among young adults, use of hookah tobacco (HT) is an emerging health-risk behavior. The goals were to demonstrate that (1) the prevalence of ever-use and current use of HT increased among U.S. young adults (18-30 years old) in the period from 2010 to 2015 and (2) the patterns of HT use differed across diverse demographic subpopulations of young adults. METHODS: We merged and analyzed data from the 2010-2011 and 2014-2015 Tobacco Use Supplement to the Current Population Survey. The sample (n = 55,352) was representative of the young adult population in the U.S. Two binary measures were the ever and current use of HT. The significance level was 5%. RESULTS: The rate of current use of HT increased from 1% in 2010-11 to 2% in 2014-15 (CI = 0.6%:1.1%). The rate of ever-use increased from 7% to 12% (CI = 4.2%:5.6%). The over-time increase was not uniform: the increase was most rapid among 26-30 year-old adults, non-Hispanic Black and African American adults, and in Northeastern and Midwestern U.S. regions. HT ever-use, overall, was associated (all p's < 0.001) with many sociodemographic factors and current tobacco-use behaviors. The rate of HT ever-use was 16% for daily and 23% for occasional cigarette smokers, 23% for users of smokeless tobacco products, 37% for cigar smokers, and 55% for smokers of regular pipe (filled with tobacco). DISCUSSION/CONCLUSION: HT use is becoming increasingly more popular among young adults in the U.S. Methods should target not only cessation of cigarette smoking but use of all tobacco products.

Implementation of a Computerized Tablet-Survey in an Adolescent Large-Scale, School-Based Study.

BACKGROUND: Computerized surveys present many advantages over paper surveys. However, school-based adolescent research questionnaires still mainly rely on paper-and-pencil surveys as access to computers in schools is often not practical. Tablet-assisted self-interviews (TASI) present a possible solution, but their use is largely untested. This paper presents a method for and our experiences with implementing a TASI in a school setting. METHODS: A TASI was administered to 3907 middle and high school students from 79 schools. The survey assessed use of tobacco products and exposure to tobacco marketing. To assess in-depth tobacco use behaviors, the TASI employed extensive skip patterns to reduce the number of not-applicable questions that nontobacco users received. Pictures were added to help respondents identify the tobacco products they were being queried about. RESULTS: Students were receptive to the tablets and required no instructions in their use. None were lost, stolen, or broken. Item nonresponse, unanswered questions, was a pre-administration concern; however, 92% of participants answered 96% or more of the questions. CONCLUSIONS: This method was feasible and successful among a diverse population of students and schools. It generated a unique dataset of in-depth tobacco use behaviors that would not have been possible through a paper-and-pencil survey.