Survey response over 15 years of follow-up in the Millennium Cohort Study.

BACKGROUND: Patterns of survey response and the characteristics associated with response over time in longitudinal studies are important to discern for the development of tailored retention efforts aimed at minimizing response bias. The Millennium Cohort Study, the largest and longest running cohort study of military personnel and veterans, is designed to examine the long-term health effects of military service and experiences and thus relies on continued participant survey responses over time. Here, we describe the response rates for follow-up survey data collected over 15 years and identify characteristics associated with follow-up survey response and mode of response (paper vs. web). METHOD: Patterns of follow-up survey response and response mode (web, paper, none) were examined among eligible participants (n=198,833), who were initially recruited in four panels from 2001 to 2013 in the Millennium Cohort Study, for a follow-up period of 3-15 years (2004-2016). Military and sociodemographic factors (i.e., enrollment panel, sex, birth year, race and ethnicity, educational attainment, marital status, service component, service branch, pay grade, military occupation, length of service, and time deployed), life experiences and health-related factors (i.e., military deployment/combat experience, life stressors, mental health, physical health, and unhealthy behaviors) were used to examine follow-up response and survey mode over time in multivariable generalized estimating equation models. RESULTS: Overall, an average response rate of 60% was observed across all follow-up waves. Factors associated with follow-up survey response over time included increased educational attainment, married status, female sex, older age, military deployment (regardless of combat experience), and higher number of life stressors, mental health issues, and physical health diagnoses. CONCLUSION: Despite the challenges associated with collecting multiple waves of follow-up survey data from members of the U.S. military during and after service, the Millennium Cohort Study has maintained a relatively robust response rate over time. The incorporation of tailored messages and outreach to those groups least likely to respond over time may improve retention and thereby increase the representativeness and generalizability of collected survey data.

Does the feedback of blood results in observational studies influence response and consent? A randomised study of the Understanding Society Innovation Panel.

BACKGROUND: While medical studies generally provide health feedback to participants, in observational studies this is not always the case due to logistical and financial difficulties, or concerns about changing observed behaviours. However, evidence suggests that lack of feedback may deter participants from providing biological samples. This paper investigates the effect of offering feedback of blood results on participation in biomeasure sample collection. METHODS: Participants aged 16 and over from a longitudinal study - the Understanding Society Innovation Panel-were randomised to three arms - nurse interviewer, interviewer, web survey - and invited to participate in biomeasures data collection. Within each arm they were randomised to receive feedback of their blood results or not. For those interviewed by a nurse both venous and dried blood samples (DBS) were taken in the interview. For the other two arms, they were asked if they would be willing to take a sample, and if they agreed a DBS kit was left or sent to them so the participant could take their own sample and return it. Blood samples were analysed and, if in the feedback arms, participants were sent their total cholesterol and HbA1c results. Response rates for feedback and non-feedback groups were compared: overall; in each arm of the study; by socio-demographic and health characteristics; and by previous study participation. Logistic regression models of providing a blood sample by feedback group and data collection approach controlling for confounders were calculated. RESULTS: Overall 2162 (80.3% of individuals in responding households) took part in the survey; of those 1053 (48.7%) consented to provide a blood sample. Being offered feedback had little effect on overall participation but did increase consent to provide a blood sample (unadjusted OR 1.38; CI: 1.16-1.64). Controlling for participant characteristics, the effect of feedback was highest among web participants (1.55; 1.11-2.17), followed by interview participants (1.35; 0.99 -1.84) and then nurse interview participants (1.30; 0.89-1.92). CONCLUSIONS: Offering feedback of blood results increased willingness to give samples, especially for those taking part in a web survey.

Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.

BACKGROUND: Patient Reported Outcome Measures (PROMs) are being increasingly introduced in clinical registries, providing a personal perspective on the expectations and impact of treatment. The aim of this study was to describe response rates (RR) to PROMs in clinical registries and databases and to examine the trends over time, and how they change with the registry type, region and disease or condition captured. METHODS: We conducted a scoping literature review of MEDLINE and EMBASE databases, in addition to Google Scholar and grey literature. All English studies on clinical registries capturing PROMs at one or more time points were included. Follow up time points were defined as follows: baseline (if available), < 1 year, 1 to < 2 years, 2 to < 5 years, 5 to < 10 years and 10 + years. Registries were grouped according to regions of the world and health conditions. Subgroup analyses were conducted to identify trends in RRs over time. These included calculating average RRs, standard deviation and change in RRs according to total follow up time. RESULTS: The search strategy yielded 1,767 publications. Combined with 20 reports and four websites, a total of 141 sources were used in the data extraction and analysis process. Following the data extraction, 121 registries capturing PROMs were identified. The overall average RR at baseline started at 71% and decreased to 56% at 10 + year at follow up. The highest average baseline RR of 99% was observed in Asian registries and in registries capturing data on chronic conditions (85%). Overall, the average RR declined as follow up time increased. CONCLUSION: A large variation and downward trend in PROMs RRs was observed in most of the registries identified in our review. Formal recommendations are required for consistent collection, follow up and reporting of PROMs data in a registry setting to improve patient care and clinical practice. Further research studies are needed to determine acceptable RRs for PROMs captured in clinical registries.

Optimising response rates in a national postal survey evaluating community mental health care: four interventions trialled.

BACKGROUND: The Community Mental Health Survey (CMHS) is a valuable resource of information on experiences of mental health care in England; however, response rates are declining. AIM: To increase the overall response rate and response rate of young adult service users. METHODS: Four interventions were trialled in a randomised controlled study design alongside the 2017 CMHS. The questionnaire and information letters were modified based on an established framework for influencing behaviour. The modified materials plus a pre-notification card were tested to increase the overall response rate, identified by one-sided z-tests between the intervention and control groups. An information flyer was modified to target service users age 18 to 35, tested using multilevel logistic regression. RESULTS: The overall response rate significantly increased with the modified information letters compared to the control (29.1% vs. 25.1%; p = 0.007). The targeted information flyer did not increase responses from younger service users; though the combination of modified information letters and questionnaire did (24.6% vs. 15.8%; p = 0.01). CONCLUSIONS: Modifying information letters based on the easy, attractive, social and timely (EAST) framework can increase response rate in postal surveys evaluating community mental health care. Modified letters combined with a modified questionnaire can increase the response from younger service users.

Converting from face-to-face to postal follow-up and its effects on participant retention, response rates and errors: lessons from the EQUAL study in the UK.

BACKGROUND: Prospective cohort studies are challenging to deliver, with one of the main difficulties lying in retention of participants. The need to socially distance during the COVID-19 pandemic has added to this challenge. The pre-COVID-19 adaptation of the European Quality (EQUAL) study in the UK to a remote form of follow-up for efficiency provides lessons for those who are considering changing their study design. METHODS: The EQUAL study is an international prospective cohort study of patients ≥65 years of age with advanced chronic kidney disease. Initially, patients were invited to complete a questionnaire (SF-36, Dialysis Symptom Index and Renal Treatment Satisfaction Questionnaire) at research clinics every 3-6 months, known as "traditional follow-up" (TFU). In 2018, all living patients were invited to switch to "efficient follow-up" (EFU), which used an abbreviated questionnaire consisting of SF-12 and Dialysis Symptom Index. These were administered centrally by post. Response rates were calculated using returned questionnaires as a proportion of surviving invitees, and error rates presented as the average percentage of unanswered questions or unclear answers, of total questions in returned questionnaires. Response and error rates were calculated 6-monthly in TFU to allow comparisons with EFU. RESULTS: Of the 504 patients initially recruited, 236 were still alive at the time of conversion to EFU; 111 of these (47%) consented to the change in follow-up. In those who consented, median TFU was 34 months, ranging from 0 to 42 months. Their response rates fell steadily from 88% (98/111) at month 0 of TFU, to 20% (3/15) at month 42. The response rate for the first EFU questionnaire was 60% (59/99) of those alive from TFU. With this improvement in response rates, the first EFU also lowered errors to baseline levels seen in early follow-up, after having almost trebled throughout traditional follow-up. CONCLUSIONS: Overall, this study demonstrates that administration of shorter follow-up questionnaires by post rather than in person does not negatively impact patient response or error rates. These results may be reassuring for researchers who are trying to limit face-to-face contact with patients during the COVID-19 pandemic.

Participation in survey research among mothers with a recent live birth: A comparison of mothers with living versus deceased infants - Findings from the Pregnancy Risk Assessment Monitoring System, 2016-2019.

BACKGROUND: Despite high infant mortality rates in the United States relative to other developed countries, little is known about survey participation among mothers of deceased infants. OBJECTIVE: To assess differences in survey response, contact and cooperation rates for mothers of deceased versus. living infants at the time of survey mailing (approximately 2-6 months postpartum), overall and by select maternal and infant characteristics. METHODS: We analysed 2016-2019 data for 50 sites from the Pregnancy Risk Assessment Monitoring System (PRAMS), a site-specific, population-based surveillance system of mothers with a recent live birth. We assessed differences in survey participation between mothers of deceased and living infants. Using American Association for Public Opinion Research (AAPOR) standard definitions and terminology, we calculated proportions of mothers who participated and were successfully contacted among sampled mothers (weighted response and contact rates, respectively), and who participated among contacted mothers (weighted cooperation rate). We then constructed multivariable survey-weighted logistic regression models to examine the adjusted association between infant vital status and weighted response, contact and cooperation rates, within strata of maternal and infant characteristics. RESULTS: Among sampled mothers, 0.3% (weighted percentage, n = 2795) of infants had records indicating they were deceased at the time of survey mailing and 99.7% (weighted percentage, n = 344,379) did not. Mothers of deceased infants had lower unadjusted weighted response (48.3% vs. 56.2%), contact (67.9% vs. 74.3%) and cooperation rates (71.1% vs. 75.6%). However, after adjusting for covariates, differences in survey participation by infant vital status were reduced. CONCLUSIONS: After covariate adjustment, differences in PRAMS participation rates were attenuated. However, participation rates among mothers of deceased infants remain two to four percentage points lower compared with mothers of living infants. Strategies to increase PRAMS participation could inform knowledge about experiences and behaviours before, during and shortly after pregnancy to help reduce infant mortality.

Post hoc Analysis of a Randomized, Controlled, Phase 2 Study to Assess Response Rates with Chlormethine/Mechlorethamine Gel in Patients with Stage IA-IIA Mycosis Fungoides.

BACKGROUND: Mycosis fungoides (MF) is the most common form of cutaneous T-cell lymphoma. Patients can be treated using chlormethine gel, a skin-directed therapy developed and approved for MF. In the randomized, controlled 201 trial, chlormethine gel was found to be noninferior to equal-strength chlormethine ointment. However, there remains a need to gain more insight into outcome measures after treatment. OBJECTIVE: The aim of this study was to further investigate the potential of chlormethine gel treatment through a novel post hoc analysis of the 201 trial data (NCT00168064). METHODS: Patients were randomized to chlormethine gel or ointment; response assessments included Composite Assessment of Index Lesion Severity (CAILS) and total body surface area (BSA). In this post hoc analysis, additional subgroup response analyses were performed for stage IA/IB-IIA MF. Very good partial response (75 to <100% improvement) was included as an additional response category. Time to response and overall response trends were determined. Finally, multivariate time-to-event analyses were performed to determine whether associations were observed between treatment frequency, response, and adverse events. RESULTS: Response rates were significantly higher for patients with stage IA MF for CAILS (intent-to-treat [p = 0.0014] and efficacy-evaluable [EE; p = 0.0036] populations) and BSA (EE population [p = 0.0488]) treated with gel versus ointment. Time to first CAILS response and response trends were better for all-stage gel-treated patients overall. No association was seen between treatment frequency and response or occurrence of adverse events at the following visit. An association was observed between the occurrence of contact dermatitis and improved clinical response at the next visit (p = 0.0001). CONCLUSION: This post hoc analysis shows that treatment with chlormethine gel may result in higher and faster response rates compared with chlormethine ointment, which confirms and expands results reported in the original analysis. The incidence of contact dermatitis may potentially be a prognostic indicator for clinical response; this needs to be confirmed in a larger population.

Women's Perspectives on Factors Influencing Florida Pregnancy Risk Assessment Monitoring System (PRAMS) Response.

OBJECTIVES: To inform updates to the Pregnancy Risk Assessment Monitoring System (PRAMS) design and processes, African American/Black and Hispanic/Latina women in Florida provided feedback on their awareness and perceptions of the PRAMS survey, and preferences for survey distribution, completion, design and content. METHODS: Focus groups were conducted in English and Spanish with 29 women in two large metropolitan counties. Participants completed a brief survey, reviewed the PRAMS questionnaire and recruitment materials, engaged in discussion, and gave feedback directly onto cover design posters. RESULTS: Participants reported limited awareness of PRAMS. Preferences for survey distribution and completion varied by participant lifestyle. Interest in topics covered by PRAMS was as a motivator for completion, while distrust and confidentiality concerns were deterrents. Participants were least comfortable answering questions about income, illegal drug use, and pregnancy loss/infant death. Changes to the length of the survey, distribution methods, and incentives/rewards for completion were recommended. CONCLUSIONS FOR PRACTICE: Results highlight the need to increase PRAMS awareness, build trust, and consider the design, length and modality for questionnaire completion as possible avenues to improve PRAMS response rates.

A cost-effective approach to increasing participation in patient-reported outcomes research in cancer: A randomized trial of video invitations.

Maximizing participation in cancer research is important to improve the validity and generalizability of research findings. We conducted a four-arm randomized controlled trial to test the impact of a novel video invitation on participant response. We invited childhood cancer survivors and parents of survivors <16 years to complete questionnaires. We compared response rates to an invitation letter (control) vs receiving the letter plus a video invitation on a flash drive presented by a childhood cancer survivor, a pediatric oncologist or a researcher. We explored factors associated with viewing the video and examined the impact of enclosing the USB on study costs. Overall 54% (634/1176) of questionnaires were returned. Participants who received a video invitation on a USB were more likely to return the questionnaire than those who did not (58% vs 47%, P < .001). Participation rate did not significantly differ by video presenter. Forty-seven percent of participants who received a USB reported watching the video, of whom 48% reported that the video influenced their decision to participate. Participants with a lower income (OR = 0.43, 95% CI = 0.25-0.74, P = .002) were more likely to report watching the video. Participants who received a video invitation required significantly fewer reminder calls than those who only received a written invitation (mean = 1.6 vs 1.1 calls, P < .001), resulting in a 25% recruitment cost-saving for the study. Adding a USB with a video study invitation to recruitment packages is a cost-effective way of improving study participation. This is important in an era of declining study participation and underrepresentation of vulnerable populations in research.

Achieving Enhanced Photochromic Properties of Diarylethene through Host-Guest Interaction in Aqueous Solution.

Diarylethene (DTE) has been widely used in fluorescence probes, molecular logic gates, optical data-storage devices owing to the excellent photochromic property, while constructing high-performance photochromic DTE in aqueous media remains a big challenge. Herein we present several host-guest systems formed between cucurbit[n]uril (CB[n], n=7, 8, 10) and two water-soluble DTE derivatives 1 and 2. It was found that host-guest interactions not only affect the photophysical properties of photochromic guests, but also make great differences on the photoreaction process. Different host-guest binding behaviors also lead to different effects on the photochromic properties of guests. In the presence of CB[n], both 1 and 2 showed enhanced emission and higher fluorescence quenching ratio at photostationary state. Besides, CB[10]⋅1 exhibited faster response rate in cyclization reaction and better photofatigue resistance than free 1 in aqueous solution, while the supramolecular assembly of (CB[8])n ⋅(2)n showed slower response rate in both directions of the reversible photoreaction. Besides, the photofatigue resistance of 2 can be greatly improved through binding with CB[7]. Our results suggest that host-guest interactions could be an efficient way to improve photochromic properties of DTE in aqueous solution.

Differences in Mode Preferences, Response Rates, and Mode Effect Between Automated Email and Phone Survey Systems for Patients of Primary Care Practices: Cross-Sectional Study.

BACKGROUND: A growing number of health care practices are adopting software systems that link with their existing electronic medical records to generate outgoing phone calls, emails, or text notifications to patients for appointment reminders or practice updates. While practices are adopting this software technology for service notifications to patients, its use for collection of patient-reported measures is still nascent. OBJECTIVE: This study assessed the mode preferences, response rates, and mode effect for a practice-based automated patient survey using phone and email modalities to patients of primary care practices. METHODS: This cross-sectional study analyzed responses and respondent demographics for a short, fully automated, telephone or email patient survey sent to individuals within 72 hours of a visit to their regular primary care practice. Each survey consisted of 5 questions drawn from a larger study's patient survey that all respondents completed in the waiting room at the time of their visit. Automated patient survey responses were linked to self-reported sociodemographic information provided on the waiting room survey including age, sex, reported income, and health status. RESULTS: A total of 871 patients from 87 primary care practices in British Columbia, Ontario, and Nova Scotia, Canada, agreed to the automated patient survey and 470 patients (45.2%) completed all 5 questions on the automated survey. Email administration of the follow-up survey was preferred over phone-based administration, except among patients aged 75 years and older (P<.001). Overall, response rates for those who selected an emailed survey (369/606, 60.9%) were higher (P<.001) than those who selected the phone survey (101/265, 38.1%). This held true irrespective of age, sex, or chronic disease status of individuals. Response rates were also higher for email (range 57.4% [58/101] to 66.3% [108/163]) compared with phone surveys (range 36% [23/64] to 43% [10/23]) for all income groups except the lowest income quintile, which had similar response rates (email: 29/63, 46%; phone: 23/50, 46%) for phone and email modes. We observed moderate (range 64.6% [62/96] to 78.8% [282/358]) agreement between waiting room survey responses and those obtained in the follow-up automated survey. However, overall agreement in responses was poor (range 45.3% [43/95] to 46.2% [43/93]) for 2 questions relating to care coordination. CONCLUSIONS: An automated practice-based patient experience survey achieved significantly different response rates between phone and email and increased response rates for email as income group rose. Potential mode effects for the different survey modalities may limit multimodal survey approaches. An automated minimal burden patient survey could facilitate the integration of patient-reported outcomes into care planning and service organization, supporting the move of our primary care practices toward a more responsive, patient-centered, continual learning system. However, practices must be attentive to furthering inequities in health care by underrepresenting the experience of certain groups in decision making based on the reach of different survey modes.

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

AIM: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. METHOD: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. RESULTS: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. CONCLUSIONS: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Who responds? An examination of response rates to a national postal survey of Aboriginal and Torres Strait Islander adults, 2018-2019.

BACKGROUND: Evidence on the effectiveness of postal recruitment methods for Indigenous peoples is lacking. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, uses multi-staged sampling. We aimed to test postal surveys as a primary recruitment method, analysing preliminary response rate data to inform the Study's ongoing sampling approach. METHODS: Twenty thousand adults aged ≥16 years were sampled from Aboriginal and Torres Strait Islander people enrolled in the Medicare Australia Enrolment Database. We calculated response rates at 4 and 15 weeks, overall and by age group, gender, state/territory and remoteness. RESULTS: The overall response rate was 2.3% (n = 456/20000). Highest response rates were observed among males and females ≥50 years from major cities (6.0, 95%CI 4.4-7.9 and 5.5%, 4.1-7.2, respectively) and regional areas (6.0%, 4.6-7.6 and 6.2%, 4.9-7.7, respectively). Younger age groups and remote areas had lower response rates; all remote age groups < 50 years had a response rate ≤ 0.6%. While most participants responded on the paper surveys, online responses were more common among younger age groups and, respondents with higher education levels and whose first language was not English. CONCLUSION: Using a postal survey, we observed response rates of ≥5.5% among older Aboriginal and Torres Strait Islander adults in major cities and regional areas; response rates were lower in other groups. A two-stage postal distribution approach provided an opportunity to adapt sampling approaches to different demographic groups. Based on initial response rates, the sampling strategy was revised to send postal surveys to groups with higher response rates groups and focus field recruitment strategies on low response groups.

Increasing questionnaire response: evidence from a nested RCT within a longitudinal birth cohort study.

BACKGROUND: High response rates are essential when questionnaires are used within research, as representativeness can affect the validity of studies and the ability to generalise the findings to a wider population. The study aimed to measure the response rate to questionnaires from a large longitudinal epidemiological study and sought to determine if any changes made throughout data collection had a positive impact on the response to questionnaires and addressed any imbalance in response rates by participants' levels of deprivation. METHODS: Data were taken from a prospective, comparative study, designed to examine the effects of the reintroduction of water fluoridation on children's oral health over a five-year period. Response rates were analysed for the first year of data collection. During this year changes were made to the questionnaire layout and cover letter to attempt to increase response rates. Additionally a nested randomised control trial compared the effect on response rates of three different reminders to complete questionnaires. RESULTS: Data were available for 1824 individuals. Sending the complete questionnaire again to non-responders resulted in the highest level of response (25%). A telephone call to participants was the only method that appeared to address the imbalance in deprivation, with a mean difference in deprivation score of 2.65 (95% CI -15.50 to 10.20) between the responders and non-responders. CONCLUSIONS: Initially, low response rates were recorded within this large, longitudinal study giving rise to concerns about non-response bias. Resending the entire questionnaire again was the most effective way of reminding participants to complete the questionnaire. As this is a less labour intensive method than for example, calling participants, more time can then be spent targeting groups who are underrepresented. In order to address these biases, data can be weighted in order to draw conclusions about the population.

Sociodemographic Factors Influenced Response to the 2015 National Nutrition Survey on Preschool Children: Results From Linkage With the Comprehensive Survey of Living Conditions.

BACKGROUND: The National Nutrition Survey on Preschool Children, Japan (NNSPC) provides fundamental information for policy making for child nutrition. However, the response rate and background characteristics of subjects are unclear. Here, we examined response rate and sociodemographic factors related with response to the survey and evaluated the magnitude of bias due to selective response in the survey estimates of the NNSPC. METHODS: This study was based on two national surveys conducted in 2015: the NNSPC and the Comprehensive Survey of Living Conditions (CSLC). Because potential survey participants of the NNSPC were children aged <6 years and their households that answered the CSLC, we examined response rates and respondent characteristics by linking the data of the NNSPC and CSLC. Multiple logistic regression analysis was used to identify sociodemographic factors associated with response. Potential bias caused by non-response in the survey estimates was examined after considering missingness through multiple imputation. RESULTS: Among the 5,343 children who participated in the CSLC, 3,426 children responded to the NNSPC (response rate = 64.1%). Variables associated with response were living in a smaller city, a large number of children, three-generation family structure, older maternal age, and a non-working mother. The prevalence of overweight was underestimated by 20%, but the bias for almost all variables examined was small. CONCLUSIONS: Response to the survey varied by sociodemographic characteristics. Some biases, mostly small, were seen in survey estimates of the 2015 NNSPC. Further insight into the effect of selective response is important to assess associations between variables more precisely.

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

Placebo response rates and potential modifiers in double-blind randomized controlled trials of second and newer generation antidepressants for major depressive disorder in children and adolescents: a systematic review and meta-regression analysis.

Children and adolescents with major depressive disorder (MDD) appear to be more responsive to placebo than adults in randomized placebo-controlled trials (RCTs) of second and newer generation antidepressants (SNG-AD). Previous meta-analyses obtained conflicting results regarding modifiers. We aimed to conduct a meta-analytical evaluation of placebo response rates based on both clinician-rating and self-rating scales. Based on the most recent and comprehensive study on adult data, we tested whether the placebo response rates in children and adolescents with MDD also increase with study duration and number of study sites. We searched systematically for published RCTs of SNG-AD in children and/or adolescents (last update: September 2017) in public domain electronic databases and additionally for documented studies in clinical trial databases. The log-transformed odds of placebo response were meta-analytically analyzed. The primary and secondary outcomes were placebo response rates at the end of treatment based on clinician-rating and self-rating scales, respectively. To examine the impact of study duration and number of study sites on placebo response rates, we performed simple meta-regression analyses. We selected other potential modifiers of placebo response based on significance in at least one previous pediatric meta-analysis and on theoretical considerations to perform explorative analyses. We applied sensitivity analyses with placebo response rates closest to week 8 to compare our data with those reported for adults. We identified 24 placebo-controlled trials (2229 patients in the placebo arms). The clinician-rated placebo response rates ranged from 22 to 62% with a pooled response rate of 45% (95% CI 41-50%). The number of study sites was a significant modifier in the simple meta-regression analysis [odds ratio (OR) 1.01, 95% CI 1.01-1.02, p = 0.0003, k = 24) with more study sites linked to a higher placebo response. Study duration was not significantly associated with the placebo response rate. The explorative simple analyses revealed that publication year may be an additional modifier. However, in the explorative multivariable analysis including the number of study sites and the publication year only the number of study sites reached a p value ≤ 0.05. The self-rated placebo response rates ranged from 1 to 68% with a pooled response rate of 26% (95% CI 10-54%) (k = 6; n = 396). This meta-analysis confirms a high pooled placebo response rate in children and adolescents based on clinician ratings, which exceeds that observed in the most recent meta-analysis of placebo effects in adults (36%; 95% CI 35-37%) published in 2016. However, and similar to findings in adults, the pooled response rates based on self-ratings were substantially lower. In accordance with previous meta-analyses, we corroborated the number of study sites as significant modifier. In comparison to the recent adult meta-analysis, the substantially lower number of pediatric studies entails a reduced power to detect modifiers. Future studies should provide more precise and homogenous information to support discovery of potential modifiers and consider no-treatment-if ethically permissible-to allow differentiation between placebo and spontaneous remission rates. If these differ, practicing clinicians should facilitate placebo effects as an addition to the verum effect to maximize benefits. Further research is required to explain the discrepant response rates between clinician and self-ratings.

What do we know about cancer immunotherapy? Long-term survival and immune-related adverse events.

Immunotherapy delivered a new therapeutic option to the oncologist: Ipilimumab (anti-CTLA-4), Nivolumab and Pembrolizumab (anti-PD1), and Atezolizumab (anti-PD-L1) increase overall survival and show a better safety profile compared to chemotherapy in patients with metastatic melanoma, lung, renal cancer among others. But all that glitters is not gold and there is an increasing number of reports of adverse effects while using immune-checkpoint inhibitors. While chemotherapy could weaken the immune system, this novel immunotherapy could hyper-activate it, resulting in a unique and distinct spectrum of adverse events, called immune-related adverse events (IRAEs). IRAEs, ranging from mild to potentially life-threatening events, can involve many systems, and their management is radically different from that of cytotoxic drugs: immunosuppressive treatments, such as corticoids, infliximab or mycophenolate mofetil, usually result in complete reversibility, but failing to do so can lead to severe toxicity or even death. Patient selection is an indirect way to reduce adverse events minimizing the number of subjects exposed to this drugs: unfortunately PDL-1, the actual predictive biomarker, would not allow clinicians select or exclude patients for treatment with checkpoint inhibitors.

Conducting surveys with multidisciplinary health care providers: Current challenges and creative approaches to sampling, recruitment, and data collection.

Surveys represent one of the most common and useful ways to collect self-reported data on a wide variety of topics and from a diversity of respondents, including health care providers (HCPs). Unfortunately, survey response rates have been declining for decades; surveys with HCPs often yield response rates of 40% or less. Another major challenge in surveys with HCPs arises from difficulties in identifying appropriate sampling frames. The lack of appropriate sampling frames is particularly problematic when trying to survey multiple types of HCPs or those who work in unusual practice settings or specialties. The purpose of this paper is to describe the current challenges to survey research with college HCPs who are members of multidisciplinary care teams, and propose alternative approaches to sampling and data collection. An exemplar is provided in which three different approaches to sampling, recruitment and data collection were undertaken with a multidisciplinary sample of college HCPs. The three approaches are compared in terms of response rates, costs, and sample characteristics. Differences were noted in effort, response rates, and sample characteristics. Respondents recruited from professional organization mailing lists were disproportionately from smaller, private college/universities, as compared with those recruited from colleges/universities selected from a U.S. Department of Education list. However, no differences in variables of interest were found between the three samples, reducing concerns of potential bias. Developing best practices for surveying multiple types of HCPs will become increasingly important as we seek to better understand current care processes and plan implementation studies to promote the adoption of practice recommendations.

Alcohol habits in Sweden during 1997-2018: a repeated cross-sectional study.

Aims: This study describes changes in alcohol habits in age and gender strata among the Swedish general population during the 21-year period following the Swedish EU membership in 1995. Methods: The Alcohol Use Disorders Identification Test (AUDIT) was distributed as a postal questionnaire to randomly selected cross-sectional samples every fourth year, starting in 1997. Results: Six samples were included in this study. A comparison between 2014 and 2018 showed a tendency to decreasing average total AUDIT scores, particularly among men and in the youngest age group (Cohen's d = 0.28). Conclusion: The results should be understood in the context of declining response rates in this type of survey.