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BACKGROUND: Participation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.METHODS: A population-based, cross-sectional cohort study was performed among long-term (5-20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation.RESULTS: In total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%).CONCLUSIONS: Study participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.

Supplemental Digital Content is available in the text., Background: In the context of declining levels of participation, understanding differences between participants and non-participants in health surveys is increasingly important for reliable measurement of health-related behaviors and their social differentials. This study compared participants and non-participants of the Finnish Health 2000 survey, and participants and a representative sample of the target population, in terms of alcohol-related harms (hospitalizations and deaths) and all-cause mortality. Methods: We individually linked 6,127 survey participants and 1,040 non-participants, aged 30–79, and a register-based population sample (n = 496,079) to 12 years of subsequent administrative hospital discharge and mortality data. We estimated age-standardized rates and rate ratios for each outcome for non-participants and the population sample relative to participants with and without sampling weights by sex and educational attainment. Results: Harms and mortality were higher in non-participants, relative to participants for both men (rate ratios = 1.5 [95% confidence interval = 1.2, 1.9] for harms; 1.6 [1.3, 2.0] for mortality) and women (2.7 [1.6, 4.4] harms; 1.7 [1.4, 2.0] mortality). Non-participation bias in harms estimates in women increased with education and in all-cause mortality overall. Age-adjusted comparisons between the population sample and sampling weighted participants were inconclusive for differences by sex; however, there were some large differences by educational attainment level. Conclusions: Rates of harms and mortality in non-participants exceed those in participants. Weighted participants’ rates reflected those in the population well by age and sex, but insufficiently by educational attainment. Despite relatively high participation levels (85%), social differentiating factors and levels of harm and mortality were underestimated in the participants.

BackgroundUnderstanding women’s life conditions regarding their non-participation in different health-promoting and disease-preventing activities is important as it may draw attention to potential areas for improvement in the healthcare sector. Mammographic screening, a disease-preventing service, facilitates early detection of any potential malignancies and consequently prompts initiation of treatment. The reasons for non-participation in mammographic screening can be understood from different perspectives, such as socioeconomic and lifestyle-related determinants of health. This study aims to gain a deeper understanding of women’s experiences and perceptions about non-participation in mammographic screening in a Swedish region with a single mammographic facility.MethodsData from individual semi-structured interviews, conducted in 2018 with eleven women between the ages of 48 and 73, were analysed by a qualitative content analysis.ResultsThe findings reveal three main categories: 1) doubts regarding mammographic screening and its organisation, 2) sense and sensibility in the decision to refrain from mammographic screening, and 3) dependency and options. These three categories indicate aspects, such as the individual’s life situation, accessibility to the offered service, and the flexibility of the healthcare system, that need to be considered to improve the organisation of mammographic screening.ConclusionListening to the women’s voices regarding their experiences and perceptions about mammographic screening is important as individual characteristics and social circumstances interact with healthcare and affect the degree of participation.

Background: Yoga-based interventions can be effective in preventing type 2 diabetes mellitus (T2DM). We developed a Yoga program for T2DM prevention (YOGA-DP) among high-risk people and conducted a feasibility randomized controlled trial (RCT) in India. The objective of this study was to identify and explore why potential participants declined to participate in the feasibility RCT.Methods: An exploratory qualitative study, using semi-structured interviews, was conducted at a Yoga center in New Delhi, India. Fourteen people (10 women and four men) who declined to participate in the feasibility RCT were interviewed, and 13 of them completed the non-participant questionnaire, which captured their socio-demographics, diets, physical activities, and reasons for declining.Results: Three types of barriers were identified and explored which prevented participation in the feasibility RCT: (1) personal barriers, such as lack of time, perceived sufficiency of knowledge, preferences about self-management of health, and trust in other traditional and alternative therapies; (2) contextual barriers, such as social influences and lack of awareness about preventive care; and (3) study-related barriers, such as lack of study information, poor accessibility to the Yoga site, and lack of trust in the study methods and intervention.Conclusions: We identified and explored personal, contextual, and study-related barriers to participation in a feasibility RCT in India. The findings will help to address recruitment challenges in future Yoga and other RCTs.Clinical Trial Registration:www.ClinicalTrials.gov, identifier: CTRI/2019/05/018893.

Surveys are key means of obtaining policy-relevant information not available from routine sources. Bias arising from non-participation is typically handled by applying weights derived from limited socio-demographic characteristics. This approach neither captures nor adjusts for differences in health and related behaviours between participants and non-participants within categories. We addressed non-participation bias in alcohol consumption estimates using novel methodology applied to 2003 Scottish Health Survey responses record-linked to prospective administrative data. Differences were identified in socio-demographic characteristics, alcohol-related harm (hospitalisation or mortality) and all-cause mortality between survey participants and, from unlinked administrative sources, the contemporaneous general population of Scotland. These were used to infer the number of non-participants within each subgroup defined by socio-demographics and health outcomes. Synthetic observations for non-participants were then generated, missing only alcohol consumption. Weekly alcohol consumption values among synthetic non-participants were multiply imputed under missing at random and missing not at random assumptions. Relative to estimates adjusted using previously derived weights, the obtained mean weekly alcohol intake estimates were up to 59% higher among men and 16% higher among women, depending on the assumptions imposed. This work demonstrates the universal value of multiple imputation-based methodological advancement incorporating administrative health data over routine weighting procedures.

Background Screening programmes for cervical cancer, breast cancer and colorectal cancer have been implemented in many Western countries to reduce cancer incidence and mortality. Ethnic minority women are less likely to participate in cancer screening than the majority population. In worst case this can result in higher incidence rates, later diagnosis and treatment and ultimately inferior survival. In this paper we explored the perceptions about cancer and perceived barriers towards cancer screening participation among ethnic minority women in a deprived area in Denmark. Methods Interview study with ethnic minority women in a deprived area in Denmark. The interviews were transcribed verbatim followed by an inductive content analysis. Results Cancer was perceived as a deadly disease that could not be treated. Cancer screening was perceived as only relevant if the women had symptoms. Knowledge about cancer screening was fragmented, often due to inadequate Danish language skills and there was a general mistrust in the Danish healthcare system due to perceived low medical competences in Danish doctors. There was, however, a very positive and curious attitude regarding information about the Danish cancer screening programmes and a want for more information. Conclusion Ethnic minority women did not have sufficient knowledge about cancer and the purpose of cancer screening. Perceptions about cancer screening were characterised by openness and the study showed positive and curious attitudes towards screening participation. The findings emphasise the importance of culturally adapted interventions for ethnic minority women in attempts to reduce inequality in screening participation.

Background The aim of the study was to estimate the proportion of women giving birth in two hospitals in the Region of Southern Denmark who did not attend the malformation scan and to elucidate the reasons for not participating. Methods In this register-based descriptive study, we used patient administration systems to identify women who had given birth at two Danish hospitals between March 2013 and January 2015. We then linked this information with the hospital database for fetal medicine (Astraia) to identify women who did not attend the malformation scan at week 18–20. We reviewed the medical records of these women to validate the data and to identify the reason for non-participation. Results Of 7690 births, 153 (2%) women did not attend the malformation scan. The main reason for non-participation was a passive deselection (81%). Most of these women were not present in Denmark at the time of the malformation scan (61%) and few women declined (8%). Conclusions Less than 2% of a birth cohort in two major hospitals in Denmark did not attend the free offer of a malformation scan. Most of these women (81%) did not actively decide against the malformation scan. Very few (0.2%) declined the malformation scan. Non-attendance is not always due to an active decision made by the pregnant woman. Electronic supplementary material The online version of this article (10.1186/s12884-018-1877-z) contains supplementary material, which is available to authorized users.

PurposeThe 'Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship' (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.MethodsBetween 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively.ResultsParticipants had a significantly better survival compared to non-participants (HR = 1.47, P ConclusionsCancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes

Population-based screening for osteoporosis is still controversial and has not been implemented. Non-participation in systematic screening was evaluated in 34,229 women age 65-81 years. Although participation rate was high, non-participation was associated with comorbidity, aging other risk factors for fractures, and markers of low social status, e.g., low income, pension, and living alone. A range of strategies is needed to increase participation, including development of targeted information and further research to better understand the barriers and enablers in screening for osteoporosis.INTRODUCTION: Participation is crucial to the success of a screening program. The objective of this study was to analyze non-participation in Risk-stratified Osteoporosis Strategy Evaluation, a two-step population-based screening program for osteoporosis.METHODS: Thirty-four thousand two hundred twenty-nine women aged 65 to 81 years were randomly selected from the background population and randomized to either a screening group (intervention) or a control group. All women received a self-administered questionnaire designed to allow calculation of future risk of fracture based on FRAX. In the intervention group, women with an estimated high risk of future fracture were invited to DXA scanning. Information on individual socioeconomic status and comorbidity was obtained from national registers.RESULTS: A completed questionnaire was returned by 20,905 (61%) women. Non-completion was associated with older age, living alone, lower education, lower income, and higher comorbidity. In the intervention group, ticking "not interested in DXA" in the questionnaire was associated with older age, living alone, and low self-perceived fracture risk. Women with previous fracture or history of parental hip fracture were more likely to accept screening by DXA. Dropping out when offered DXA, was associated with older age, current smoking, higher alcohol consumption, and physical impairment.CONCLUSIONS: Barriers to population-based screening for osteoporosis appear to be both psychosocial and physical in nature. Women who decline are older, have lower self-perceived fracture risk, and more often live alone compared to women who accept the program. Dropping out after primary acceptance is associated not only with aging and physical impairment but also with current smoking and alcohol consumption. Measures to increase program participation could include targeted information and reducing physical barriers for attending screening procedures.

Background: To reduce colorectal cancer (CRC) mortality through population-based screening programmes using faecal tests, it is important that individuals continue to participate in the repeated rounds of screening. We aimed to identify lifestyle predictors for discontinuation of faecal immunochemical test (FIT) screening after the first round, as well as lifestyle predictors for colorectal neoplasia detected in the second-round FIT screening. Methods: In this longitudinal study, we invited 6959 individuals aged 50–74 years from south-east Norway for a first round of FIT screening and to complete a self-reported lifestyle questionnaire on demographic factors, body mass index (BMI, kg m−2), smoking habits, physical activity, consumption of alcohol and dietary items. Two years later, we estimated the associations between these factors, non-participation and screening results in the second round of FIT screening using adjusted odds ratios (ORs) and 95% confidence intervals (CIs). Results: Of the 3114 responders to the questionnaire who completed the first-round FIT and who were invited to participate in second-round FIT screening, 540 (17%) did not participate. The OR and (95% CI) for discontinuation of FIT screening after the first round was 1.61 (1.24–2.10) for current smoking compared with non-smoking; 2.01 (1.25–3.24) for BMI ≥ 35 kg m−2 compared with BMI 16.9–24.9 kg m−2 and 0.70 (0.52–0.94) for physical activity in the third quartile vs the first. Among participants, smoking, high BMI and high alcohol consumption were associated with an increased odds of detecting colorectal neoplasia (n=107). Conclusions: These results may indicate that Norwegian FIT screening participants who discontinue after the first round have lifestyle behaviours associated with increased risk of CRC.

Background Healthcare services are being increasingly digitalised in European countries. However, in studies evaluating digital health technology, some people are less likely to participate than others, e.g. those who are older, those with a lower level of education and those with poorer digital skills. Such non-participation in research – deriving from the processes of non-recruitment of targeted individuals and self-selection – can be a driver of old-age exclusion from new digital health technologies. We aim to introduce, discuss and test an instrument to measure non-participation in digital health studies, in particular, the process of self-selection. Methods Based on a review of the relevant literature, we designed an instrument – the NPART survey questionnaire – for the analysis of self-selection, covering five thematic areas: socioeconomic factors, self-rated health and subjective overall quality of life, social participation, time resources, and digital skills and use of technology. The instrument was piloted on 70 older study persons in Sweden, approached during the recruitment process for a trial study. Results Results indicated that participants, as compared to decliners, were on average slightly younger and more educated, and reported better memory, higher social participation, and higher familiarity with and greater use of digital technologies. Overall, the survey questionnaire was able to discriminate between participants and decliners on the key aspects investigated, along the lines of the relevant literature. Conclusions The NPART survey questionnaire can be applied to characterise non-participation in digital health research, in particular, the process of self-selection. It helps to identify underrepresented groups and their needs. Data generated from such an investigation, combined with hospital registry data on non-recruitment, allows for the implementation of improved sampling strategies, e.g. focused recruitment of underrepresented groups, and for the post hoc adjustment of results generated from biased samples, e.g. weighting procedures.

Early detection of colorectal cancer has the potential to reduce mortality at population level. Colonoscopy is the preferred modality for colon cancer screening and prevention, but attendance rates are low. To exploit colonoscopy’s preventive potential, it is necessary to identify the factors influencing uptake, especially among previous non-participants. This analysis of cross-sectional data involved 936 non-participants in screening colonoscopy aged 55 years or older in Germany. Differences between non-participants with and without future participation intentions were investigated in terms of socio-demographic factors, health status, attitudes and beliefs, and medical counselling. Logistic regression models were fitted to estimate associations between intention to participate and selected factors. Intention to participate was lower among women than among men. For both genders, intention to participate was positively associated with younger age. For women, higher socioeconomic status and counselling were positively associated with intention to participate. Men showed a positive association with favouring joint decision-making. The results draw attention to starting points for improving acceptance of and participation in screening colonoscopy. This includes good medical counselling and successful physician–patient communication, for which the information and communication skills of both medical professions and the general public should be strengthened. Gender differences should be considered.

Background With declining rates of participation in epidemiological studies there is an important need to attempt to understand what factors might affect response. This study examines the pattern of response at different adult ages within a contemporary cross-sectional population-based cohort, the Cambridge Centre for Ageing and Neuroscience (Cam-CAN). Methods Using logistic regression, we investigated associations between age, gender and Townsend deprivation level for both participants and non-participants. Weighted estimates of the odds ratios with confidence intervals for each demographic characteristic were calculated. Reasons given for refusal were grouped into three broad categories: ‘active’, ‘passive’ and illness preventing interview. Results An association of age and participation was found, with individuals in middle age groups more likely to participate (age group 48–57 OR: 1.8, 95% CI: 1.5–2.2 and age group 58–67 OR: 2.1, 95% CI: 1.7–2.4). Overall, there was no difference in participation between men and women. An association with deprivation was found, with those living in the most deprived areas being the least willing to participate (fifth quintile OR: 0.6, 95% CI: 0.5–0.7). An interaction between age and gender was found whereby younger women and older men were more likely to agree to participate (p = 0.01). Conclusion Our findings highlight some of the factors affecting recruitment into epidemiological studies in the UK and suggest that targeted age-specific recruitment strategies might be needed to increase participation rates in future cohort investigations. Electronic supplementary material The online version of this article (10.1186/s12889-018-5663-7) contains supplementary material, which is available to authorized users.

Aims: Health examination surveys (HES) provide important information about population health and health-related factors, but declining participation rates threaten the representativeness of collected data. It is hard to conduct national HESs at examination clinics near to every sampled individual. Thus, it is interesting to look into the possible association between the distance from home to the examination clinic and non-participation, and whether there is a certain distance after which the participation activity decreases considerably. Methods: Data from two national HESs conducted in Finland in 2011 and 2012 were used and a logistic regression model was fitted to investigate how distance was related to non-participation. Results: We found out that non-participation modestly increased with distance to the examination clinic. An additional analysis indicated that the option of having an examination at home may decrease the effect of distance to participation. Conclusions: Long distances from home to the examination clinic are one reason for low participation activity. Possible bias caused by these differences in participation could be decreased by providing the option of a home examination.

Background: Migrants are considered a key population at risk for sexually transmitted and blood-borne diseases in Europe. Prevalence data to support the design of infectious diseases screening protocols are scarce. We aimed to estimate the prevalence of hepatitis B and C, human immunodefiency virus (HIV) infection and syphilis in specific migrant groups in Finland and to assess risk factors for missed diagnosis. Methods: A random sample of 3000 Kurdish, Russian, or Somali origin migrants in Finland was invited to a migrant population-based health interview and examination survey during 2010-2012. Participants in the health examination were offered screening for hepatitis B and C, HIV and syphilis. Notification prevalence in the National Infectious Diseases Register (NIDR) was compared between participants and non-participants to assess non-participation. Missed diagnosis was defined as test-positive case in the survey without previous notification in NIDR. Inverse probability weighting was used to correct for non-participation. Results: Altogether 1000 migrants were screened for infectious diseases. No difference in the notification prevalence among participants and non-participants was observed. Seroprevalence of hepatitis B surface antigen (HBsAg) was 2.3%, hepatitis C antibodies 1.7%, and Treponema pallidum antibodies 1.3%. No cases of HIV were identified. Of all test-positive cases, 61% (34/56) had no previous notification in NIDR. 48% of HBsAg, 62.5% of anti-HCV and 84.6% of anti-Trpa positive cases had been missed. Among the Somali population (n = 261), prevalence of missed hepatitis B diagnosis was 3.0%. Of the 324 Russian migrants, 3.0% had not been previously diagnosed with hepatitis C and 2.4% had a missed syphilis diagnosis. In multivariable regression model missed diagnosis was associated with migrant origin, living alone, poor self-perceived health, daily smoking, and previous diagnosis of another blood-borne infection. Conclusions: More than half of chronic hepatitis and syphilis diagnoses had been missed among migrants in Finland. Undiagnosed hepatitis B among Somali migrants implies post-migration transmission that could be prevented by enhanced screening and vaccinations. Rate of missed diagnoses among Russian migrants supports implementation of targeted hepatitis and syphilis screening upon arrival and also in later health care contacts. Coverage and up-take of current screening among migrants should be evaluated.

Objective Increasing uptake of cancer screening is a priority for health systems internationally, however, some patients may not attend because they are undergoing active treatment for the cancer of interest or have other medical reasons that mean participation would be inappropriate. This study aims to quantify the proportion of non-participants who have a medical reason for not attending cancer screening. Methods Medical reasons for not participating in breast and bowel screening were defined a priori on the basis of a literature review and expert opinion. The notes of 700 patients at two GP practices in Scotland were reviewed, to ascertain the prevalence of medical reasons amongst non-participants. Simple proportions and confidence intervals were calculated. Results 17.4% of breast and 2.3% of bowel screening non-participants had a medical reason to not participate. The two most common reasons were previous breast cancer follow up (8.86%) and recent mammogram (6.57%). Conclusion These patients may not benefit from screening while also being distressed by receiving an invitation. This issue also makes accurate monitoring and target-setting for improving uptake difficult. Further work is needed to estimate robustly the extent to which medical reasons account for screening non-participation in a larger population.

Objective: Optimising uptake of colorectal cancer (CRC) screening is important to achieve projected health outcomes. Population-based screening by flexible sigmoidoscopy (FS) was introduced in England in 2013 (NHS Bowel scope screening). Little is known about reactions to the invitation to participate in FS screening, as offered within the context of the Bowel scope programme. We aimed to investigate responses to the screening invitation to inform understanding of decision-making, particularly in relation to non-participation in screening. Design: Qualitative analysis of semi-structured in-depth interviews and written accounts. Participants and setting: People from 31 general practices in the North East and East of England invited to attend FS screening as part of NHS Bowel scope screening programme were sent invitations to take part in the study. We purposively sampled interviewees to ensure a range of accounts in terms of beliefs, screening attendance, sex, and geographical location. Results: 20 screeners and 25 non-screeners were interviewed. Written responses describing reasons for, and circumstances surrounding, non-participation from a further 28 non-screeners were included in the analysis. Thematic Analysis identified a range of reactions to the screening invitation, decision-making processes and barriers to participation. These include: a perceived or actual lack of need; inability to attend; anxiety and fear about bowel preparation, procedures or hospital; inability or reluctance to self-administer an enema; beliefs about low susceptibility to bowel cancer or treatment; understanding of harm and benefits. The strength, rather than presence, of concerns about the test and perceived need for reassurance were important in the decision to participate for both screeners and non-screeners. Decision-making occurs within the context of previous experiences and day-to-day life. Conclusions: Understanding the reasons for non-participation in FS screening can help inform strategies to improve uptake and may be transferable to other screening programmes.

Background and aims Analytical approaches to addressing survey non‐participation bias typically use only demographic information to improve estimates. We applied a novel methodology which uses health information from data linkage to adjust for non‐representativeness. We illustrate the method by presenting adjusted alcohol consumption estimates for Scotland. Design Data on consenting respondents to the Scottish Health Surveys (SHeSs) 1995–2010 were linked confidentially to routinely collected hospital admission and mortality records. Synthetic observations representing non‐respondents were created using general population data. Multiple imputation was performed to compute adjusted alcohol estimates given a range of assumptions about the missing data. Adjusted estimates of mean weekly consumption were additionally calibrated to per‐capita alcohol sales data. Setting Scotland. Participants 13 936 male and 18 021 female respondents to the SHeSs 1995–2010, aged 20–64 years. Measurements Weekly alcohol consumption, non‐, binge‐ and problem‐drinking. Findings Initial adjustment for non‐response resulted in estimates of mean weekly consumption that were elevated by up to 17.8% [26.5 units (18.6–34.4)] compared with corrections based solely on socio‐demographic data [22.5 (17.7–27.3)]; other drinking behaviour estimates were little changed. Under more extreme assumptions the overall difference was up to 53%, and calibrating to sales estimates resulted in up to 88% difference. Increases were especially pronounced among males in deprived areas. Conclusions The use of routinely collected health data to reduce bias arising from survey non‐response resulted in higher alcohol consumption estimates among working‐age males in Scotland, with less impact for females. This new method of bias reduction can be generalized to other surveys to improve estimates of alternative harmful behaviours.

Background Public health monitoring depends on valid health and disability estimates in the population 65+ years. This is hampered by high non- participation rates in this age group. There is limited insight into size and direction of potential baseline selection bias. Methods We analyzed baseline non-participation in a register-based random sample of 1481 inner-city residents 65+ years, invited to a health examination survey according to demographics available for the entire sample, self-report information as available and reasons for non-participation. One year after recruitment, non- responders were revisited to assess their reasons. Results Five groups defined by participation status were differentiated: participants (N = 299), persons who had died or moved (N = 173), those who declined participation, but answered a short questionnaire (N = 384), those who declined participation and the short questionnaire (N = 324), and non-responders (N = 301). The results confirm substantial baseline selection bias with significant underrepresentation of persons 85+ years, persons in residential care or from disadvantaged neighborhoods, with lower education, foreign citizenship, or lower health-related quality of life. Finally, reasons for non-participation could be identified for 78 % of all non-participants, including 183 non- responders. Conclusion A diversity in health problems and barriers to participation exists among non-participants. Innovative study designs are needed for public health monitoring in aging populations.

BACKGROUND: non-participation in epidemiological studies threatens the generalisability of findings. OBJECTIVE: to investigate the change in non-participation between the Medical Research Council Cognitive Function and Ageing Study (CFAS) I and II. DESIGN: a comparison of two epidemiological studies of older people using identical methods. SETTING: three geographical areas of the United Kingdom. SUBJECTS: older people aged 65 years and over. METHODS: the two studies were conducted approximately two decades apart between 1989 and 1994 (CFAS I) and between 2008 and 2011 (CFAS II). Random samples were drawn from primary care lists. We compared demographic factors associated with non-participation. RESULTS: non-participation in CFAS II was higher than in CFAS I (45.3 versus 18.3%). After adjustment for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.2 to 1.4; CFAS II: 1.1 95% CI 1.1 to 1.2). Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, P = 0.21; CFAS II, P = 0.47). CONCLUSIONS: non-participation in epidemiological studies of older people has increased substantially in the past two decades and public willingness to take part in studies of this kind would appear to be declining. As communities become more diverse and older people have increasing commitments on their time, new ways to engage prospective participants are urgently needed.

Telehealth interventions use information and communication technology to provide clinical support. Some randomised controlled trials of telehealth report high patient decline rates. A large study was undertaken to determine which patients decline to participate in telehealth trials and their reasons for doing so. Two linked randomised controlled trials were undertaken, one for patients with depression and one for patients with raised cardiovascular disease risk (the Healthlines Study). The trials compared usual care with additional support delivered by the telephone and internet. Patients were recruited via their general practice and could return a form about why they were not participating. Of the patients invited, 82.9 % (20,021/24,152) did not accept the study invite, either by returning a decline form (n = 7134) or by not responding (n = 12,887). In both trials patients registered at deprived general practices were less likely to accept the study invite. Decline forms were received from 29.5 % (7134/24,152) of patients invited. There were four frequently reported types of reasons for declining. The most common was telehealth-related: 54.7 % (3889/,7115) of decliners said they did not have access or the skills to use the internet and/or computers. This was more prevalent amongst older patients and patients registered at deprived general practices. The second was health need-related: 40.1 % (n = 2852) of decliners reported that they did not need additional support for their health condition. The third was related to life circumstances: 27.2 % (n = 1932) of decliners reported being too busy. The fourth was research-related: 15.3 % (n = 1092) of decliners were not interested in the research. A large proportion of patients declining participation in these telehealth trials did so because they were unable to engage with telehealth or did not perceive a need for it. This has implications for engagement with telehealth in routine practice, as well as for trials, with a need to offer technological support to increase patients’ engagement with telehealth. More generally, triallists should assess why people decline to participate in their studies. The Healthlines Study has the following trial registrations: depression trial: ISRCTN14172341 (registered 26 June 2012) and CVD risk trial: ISRCTN27508731 (registered 05 July 2012).

Background: non-participation in epidemiological studies threatens the generalisability of findings. Objective: to investigate the change in non-participation between the Medical Research Council Cognitive Function and Ageing Study (CFAS) I and II. Design: a comparison of two epidemiological studies of older people using identical methods. Setting: three geographical areas of the United Kingdom. Subjects: older people aged 65 years and over. Methods: the two studies were conducted approximately two decades apart between 1989 and 1994 (CFAS I) and between 2008 and 2011 (CFAS II). Random samples were drawn from primary care lists. We compared demographic factors associated with non-participation. Results: non-participation in CFAS II was higher than in CFAS I (45.3 versus 18.3%). After adjustment for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.2 to 1.4; CFAS II: 1.1 95% CI 1.1 to 1.2). Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, P = 0.21; CFAS II, P = 0.47). Conclusions: non-participation in epidemiological studies of older people has increased substantially in the past two decades and public willingness to take part in studies of this kind would appear to be declining. As communities become more diverse and older people have increasing commitments on their time, new ways to engage prospective participants are urgently needed.

Introduction: HIV testing is a cornerstone of efforts to combat the HIV epidemic, and testing conducted as part of surveillance provides invaluable data on the spread of infection and the effectiveness of campaigns to reduce the transmission of HIV. However, participation in HIV testing can be low, and if respondents systematically select not to be tested because they know or suspect they are HIV positive (and fear disclosure), standard approaches to deal with missing data will fail to remove selection bias. We implemented Heckman-type selection models, which can be used to adjust for missing data that are not missing at random, and established the extent of selection bias in a population-based HIV survey in an HIV hyperendemic community in rural South Africa.Methods: We used data from a population-based HIV survey carried out in 2009 in rural KwaZulu-Natal, South Africa. In this survey, 5565 women (35%) and 2567 men (27%) provided blood for an HIV test. We accounted for missing data using interviewer identity as a selection variable which predicted consent to HIV testing but was unlikely to be independently associated with HIV status. Our approach involved using this selection variable to examine the HIV status of residents who would ordinarily refuse to test, except that they were allocated a persuasive interviewer. Our copula model allows for flexibility when modelling the dependence structure between HIV survey participation and HIV status.Results: For women, our selection model generated an HIV prevalence estimate of 33% (95% CI 27–40) for all people eligible to consent to HIV testing in the survey. This estimate is higher than the estimate of 24% generated when only information from respondents who participated in testing is used in the analysis, and the estimate of 27% when imputation analysis is used to predict missing data on HIV status. For men, we found an HIV prevalence of 25% (95% CI 15–35) using the selection model, compared to 16% among those who participated in testing, and 18% estimated with imputation. We provide new confidence intervals that correct for the fact that the relationship between testing and HIV status is unknown and requires estimation.Conclusions: We confirm the feasibility and value of adopting selection models to account for missing data in population-based HIV surveys and surveillance systems. Elements of survey design, such as interviewer identity, present the opportunity to adopt this approach in routine applications. Where non-participation is high, true confidence intervals are much wider than those generated by standard approaches to dealing with missing data suggest.

Background Non-participation in second surveys is reported to be associated with certain baseline characteristics; however, such data are unavailable for Japanese populations. Although disease incidence during follow-up might influence participation, few reports have addressed this possibility. This study sought to identify factors associated with non-participation in a second survey of a population-based cohort, and to evaluate the influence of self-reported disease incidence on non-participation. Methods After excluding participants who left the area (n = 423), died (n = 163), and withdrew from the study (n = 9) among 12 078 participants in a baseline survey for the Japan Multi-Institutional Collaborative Cohort Study in the Saga region between 2005 and 2007, 11 483 people were invited by mail to participate in a face-to-face second survey between 2010 and 2012. The 5-year clinical health history of non-participants was assessed by mail or telephone. Baseline characteristics and self-reported clinical outcomes of non-participants were compared with those of participants. Results Among 11 483 people, 8454 (73.6%) participated in the second survey, and 2608 out of 3029 non-participants answered mail or telephone health surveys. Female sex, youngest and oldest ages, lower education, lower occupational class, current smoking, lower physical activity level, shorter sleep time, obesity, and constipation were associated with non-participation. Light drinking (0.1–22.9 g ethanol/day) was associated with participation. Non-participants reported a significantly higher incidence of cancer and a significantly lower proportion of hypertension compared with participants. Conclusions Both baseline characteristics and disease incidence during the follow-up period had significant associations with non-participation in the face-to-face second survey.

Background Trials in primary care to increase physical activity (PA) typically experience poor recruitment rates and may not recruit those with lower PA levels and who are most in need of the intervention. Despite the well-publicised benefits of physical activity, the majority of adults in the UK remain inactive and, therefore, at greater risk of many health problems. Our aim was to investigate the reasons for non-participation in the PACE-UP trial, which is a primary care pedometer-based walking intervention. This is important for successful recruitment and retention in future PA trials and programmes. Method We conducted semi-structured audio-recorded telephone interviews with 30 participants, aged 45–75 years, purposively sampled from those declining participation in the PACE-UP trial. Recruitment continued until data saturation and a demographically balanced sample was achieved. Interviews were transcribed verbatim, coded and subjected to thematic analysis. Results Interviewees supported walking as suitable exercise for most people in this age group, recognised the importance of this type of research and general practice as an appropriate setting. Key reasons for declining were: the perception of being already ‘too active’; existing medical conditions; work; travel and other commitments. Less frequently cited reasons included reluctance to be randomised, the intervention’s duration, wearing a pedometer, perceived inappropriateness of trial literature and a preference for a different kind of PA or for a group activity. Conclusions Whilst most interviewees perceived themselves to be sufficiently active, an important minority did not participate due to existing medical conditions and other commitments. Recruitment to future PA trials might be improved by tailoring activity to compensate for medical problems, and adapting PA interventions to fit around work and travel commitments. Ensuring that patient-targeted literature is succinct and inclusive and that equipment is user-friendly are also important. Primary care is seen as an appropriate setting for PA trials and programmes. Trial registration ISRCTN98538934.

This article is available through the Brunel Open Access Publishing Fund. Copyright 2014 Rogers et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Background: Physical activity is of vital importance to older peoples’ health. Physical activity intervention studies with older people often have low recruitment, yet little is known about non-participants. Methods: Patients aged 60–74 years from three UK general practices were invited to participate in a nurse-supported pedometer-based walking intervention. Demographic characteristics of 298 participants and 690 non-participants were compared. Health status and physical activity of 298 participants and 183 non-participants who completed a survey were compared using age, sex adjusted odds ratios (OR) (95% confidence intervals). 15 non-participants were interviewed to explore perceived barriers to participation. Results: Recruitment was 30% (298/988). Participants were more likely than non-participants to be female (54% v 47%; p = 0.04) and to live in affluent postcodes (73% v 62% in top quintile; p

Background Understanding reasons for non-participation in health studies can help guide recruitment strategies and inform researchers about potential sources of bias in their study sample. Whilst there is a paucity of literature regarding this issue, it remains highly plausible that men and women may have varied reasons for declining an invitation to participate in research. We aimed to investigate sex-differences in the reasons for non-participation at baseline of the Geelong Osteoporosis Study (GOS). Methods The GOS, a prospective cohort study, randomly recruited men and women aged 20 years and over from a region in south-eastern Australia using Commonwealth electoral rolls (2001–06 and 1993–97, respectively). Reasons for non-participation (n=1,200) were documented during the two recruitment periods. We used the Pearson’s chi squared test to explore differences in the reasons for non-participation between men and women. Results Non-participation in the male cohort was greater than in the female cohort (32.9% vs. 22.9%; p Conclusions Improving participation rates in epidemiological studies may require different recruitment strategies for men and women in order to address sex-specific concerns about participating in research.

Background The number of people with a chronic disease will strongly increase in the next decades. Therefore, prevention of disease becomes increasingly important. The aim of this systematic review was to identify factors that negatively influence participation in population-based disease prevention programs in General Practice and to establish whether the program type is related to non-participation levels. Methods We conducted a systematic review in Pubmed, EMBASE, CINAHL and PsycINFO, covering 2000 through July 6th 2012, to identify publications including information about characteristics of non-participants or reasons for non-participation in population-based disease prevention programs in General Practice. Results A total of 24 original studies met our criteria, seven of which focused on vaccination, eleven on screening aimed at early detection of disease, and six on screening aimed at identifying high risk of a disease, targeting a variety of diseases and conditions. Lack of personal relevance of the program, younger age, higher social deprivation and former non-participation were related to actual non-participation. No differences were found in non-participation levels or factors related to non-participation between the three program types. The large variation in non-participation levels within the program types may be partly due to differences in recruitment strategies, with more active, personalized strategies resulting in higher participation levels compared to an invitation letter. Conclusions There is still much to be gained by tailoring strategies to improve participation in those who are less likely to do so, namely younger individuals, those living in a deprived area and former non-participants. Participation may increase by applying more active recruitment strategies.

Brystkræftscreening bliver tilbudt til alle kvinder mellem 50-69 år. Første screeningsrunde blev implementeret i Region Midtjylland i 2008-09, hvor godt 20% ikke deltog. Dette register-studie undersøger sociale karakteristika blandt deltagere og ikke-deltagere og inkluderer alle kvinder som blev inviteret til første screeningrunde i Region Midtjylland (n=149.234).Resultaterne viste, at der er sociale forskelle blandt kvinder som deltager og kvinder som ikke deltager i brystkræft screening. De ældste kvinder, ugifte kvinder, kvinder med lav indkomst og lav uddannelse, kvinder ude for arbejdsmarked, kvinder uden bil og som ikke ejer den bolig de bor i var mere tilbøjelig til ikke at deltage. ABSTRACT: BACKGROUND: A population-based breast cancer screening programme was implemented in the Central Denmark Region in 2008--09. The objective of this registry-based study was to examine the association between socio-demographic characteristics and screening participation and to examine whether the group of non-participants can be regarded as a homogeneous group of women. METHOD: Participation status was obtained from a regional database for all women invited to the first screening round in the Central Denmark Region in 2008--2009 (n=149,234). Participation data was linked to registries containing socio-demographic information. Distance to screening site was calculated using ArcGIS. Participation was divided into 'participants' and 'non-participants', and non-participants were further stratified into 'active non-participants' and 'passive non-participants' based on whether the woman called and cancelled her participation or was a 'no-show'. RESULTS: The screening participation rate was 78.9%. In multivariate analyses, non-participation was associated with older age, immigrant status, low OECD-adjusted household income, high and low level education compared with middle level education, unemployment, being unmarried, distance to screening site >20 km, being a tenant and no access to a vehicle. Active and passive non-participants comprised two distinct groups with different socio-demographic characteristics, with passive non-participants being more socially deprived compared with active non-participants. CONCLUSION: Non-participation was associated with low social status e.g. low income, unemployment, no access to vehicle and status as tenant. Non-participants were also more likely than participants to be older, single, and of non-Danish origin. Compared to active non-participants, passive non-participants were characterized by e.g. lower income and lower educational level. Different interventions might be warranted to increase participation in the two non-participant groups.

Background This paper discusses whether baseline demographic, socio-economic, health variables, length of follow-up and method of contacting the participants predict non-response to the invitation for a second assessment of lifestyle factors and body weight in the European multi-center EPIC-PANACEA study. Methods Over 500.000 participants from several centers in ten European countries recruited between 1992 and 2000 were contacted 2–11 years later to update data on lifestyle and body weight. Length of follow-up as well as the method of approaching differed between the collaborating study centers. Non-responders were compared with responders using multivariate logistic regression analyses. Results Overall response for the second assessment was high (81.6%). Compared to postal surveys, centers where the participants completed the questionnaire by phone attained a higher response. Response was also high in centers with a short follow-up period. Non-response was higher in participants who were male (odds ratio 1.09 (confidence interval 1.07; 1.11), aged under 40 years (1.96 (1.90; 2.02), living alone (1.40 (1.37; 1.43), less educated (1.35 (1.12; 1.19), of poorer health (1.33 (1.27; 1.39), reporting an unhealthy lifestyle and who had either a low (25, 1.08 (1.06; 1.10); especially ≥30 kg/m2, 1.26 (1.23; 1.29)). Conclusions Cohort studies may enhance cohort maintenance by paying particular attention to the subgroups that are most unlikely to respond and by an active recruitment strategy using telephone interviews.

Background Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial. Methods Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes. Results Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents’ views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued. Conclusions These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation.

Purpose To investigate to what degree alcohol use and mental distress are associated with non-response in a population-based health study. Methods From 1995 to 1997, 91,488 persons were invited to take part in a health study at Nord-Trøndelag, Norway, and the response rate was 69.2%. Demographics were available for everyone. Survey answers from a previous survey were available for most of the participants and a majority of non-participants. In addition, the survey responses from spouses and children of the invitees were used to predict participation in the aforementioned study. Crude and adjusted ORs for a number of predictors, among these alcohol consumption and mental distress, are reported. Results Both heavy drinkers (OR = 1.27) and abstainers (OR = 1.64) had a higher probability of dropping out in comparison to people who usually do not drink. High levels of mental distress (OR = 1.84) also predicted attrition. Conclusion Alcohol use and mental distress are moderately associated with non-response, though probably not a major cause, as controlling for other variables weakened the associations. Nevertheless, the moderate but clear underrepresentation at the crude level of people with high alcohol consumption, abstainers and people with poor mental health should be taken into consideration when interpreting results from health surveys.

BACKGROUND: With declining rates of participation in epidemiological studies there is an important need to attempt to understand what factors might affect response. This study examines the pattern of response at different adult ages within a contemporary cross-sectional population-based cohort, the Cambridge Centre for Ageing and Neuroscience (Cam-CAN). METHODS: Using logistic regression, we investigated associations between age, gender and Townsend deprivation level for both participants and non-participants. Weighted estimates of the odds ratios with confidence intervals for each demographic characteristic were calculated. Reasons given for refusal were grouped into three broad categories: 'active', 'passive' and illness preventing interview. RESULTS: An association of age and participation was found, with individuals in middle age groups more likely to participate (age group 48-57 OR: 1.8, 95% CI: 1.5-2.2 and age group 58-67 OR: 2.1, 95% CI: 1.7-2.4). Overall, there was no difference in participation between men and women. An association with deprivation was found, with those living in the most deprived areas being the least willing to participate (fifth quintile OR: 0.6, 95% CI: 0.5-0.7). An interaction between age and gender was found whereby younger women and older men were more likely to agree to participate (p = 0.01). CONCLUSION: Our findings highlight some of the factors affecting recruitment into epidemiological studies in the UK and suggest that targeted age-specific recruitment strategies might be needed to increase participation rates in future cohort investigations.

Background Trials increasingly experience problems in recruiting participants. Understanding the causes of poor recruitment is critical to developing solutions. We interviewed people who had declined a trial of an innovative psychological therapy for depression (REFRAMED) about their response to the trial invitation, in order to understand their decision and identify ways to improve recruitment. Methods Of 214 people who declined the trial, 35 (16 %) gave permission to be contacted about a qualitative study to explore their decision. Analysis of transcripts of semi-structured interviews was informed by grounded theory. Results We interviewed 20 informants: 14 women and six men, aged 18 to 77 years. Many interviewees had prior experience of research participation and positive views of the trial. Interviewees’ decision making resembled a four-stage sequential process; in each stage they either decided not to participate in the trial or progressed to the next stage. In stage 1, interviewees assessed the invitation in the context of their experiences and attitudes; we term those who opted out at this stage ‘prior decliners’ as they had an established position of declining trials. In stage 2, interviewees assessed their own eligibility; those who judged themselves ineligible and opted out at this stage are termed ‘self-excluders’. In stage 3, interviewees assessed their need for the trial therapy and potential to benefit; we term those who decided they did not need the trial therapy and opted out at this stage ‘treatment decliners’. In stage 4, interviewees deliberated the benefits and costs of trial participation; those who opted out after judging that disadvantages outweighed advantages are termed ‘trial decliners’. Across all stages, most individuals declined because they judged themselves ineligible or not in need of the trial therapy. While ‘prior decliners’ are unlikely to respond to any trial recruitment initiative, the factors leading others to decline are amenable to amelioration as they do not arise from a rejection of trials or a personal stance. Conclusions To improve recruitment in similar trials, the most successful interventions are likely to address patients’ assessments of their eligibility and their potential to benefit from the trial treatment, rather than reducing trial burden. Trial registration International Standard Randomised Controlled Trial Number: ISRCTN85784627. Registration date 10 August 2011. Electronic supplementary material The online version of this article (doi:10.1186/s13063-016-1626-4) contains supplementary material, which is available to authorized users.

Background: Failure to include socio-economically deprived or ethnic minority groups in physical activity (PA) trials may limit representativeness and could lead to implementation of interventions that then increase health inequalities. Randomised intervention trials often have low recruitment rates and rarely assess recruitment bias. A previous trial by the same team using similar methods recruited 30% of the eligible population but was in an affluent setting with few non-white residents and was limited to those over 60 years of age. Methods: PACE-UP is a large, effective, population-based walking trial in inactive 45-75 year-olds that recruited through seven London general practices. Anonymised practice demographic data were available for all those invited, enabling investigation of inequalities in trial recruitment. Non-participants were invited to complete a questionnaire. Results: From 10,927 postal invitations, 1150 (10.5%) completed baseline assessment. Participation rate ratios (95% CI), adjusted for age and gender as appropriate, were lower in men 0.59 (0.52, 0.67) than women, in those under 55 compared with those ≥65, 0.60 (0.51, 0.71), in the most deprived quintile compared with the least deprived 0.52 (0.39, 0.70) and in Asian individuals compared with whites 0.62 (0.50, 0.76). Black individuals were equally likely to participate as white individuals. Participation was also associated with having a co-morbidity or some degree of health limitation. The most common reasons for non-participation were considering themselves as being too active or lack of time. Conclusions: Conducting the trial in this diverse setting reduced overall response, with lower response in socio-economically deprived and Asian sub-groups. Trials with greater reach are likely to be more expensive in terms of recruitment and gains in generalizability need to be balanced with greater costs. Differential uptake of successful trial interventions may increase inequalities in PA levels and should be monitored. Trial registration: ISRCTN.com ISRCTN98538934. Registered 2nd March 2012.