Participation Of Survivors Research Articles

RARE-05. Legal degree of disability in childhood-craniopharyngioma survivors during long-term follow-up – results of the HIT-ENDO study

BACKGROUND: Cranioparyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar region. The prognosis after diagnosis during childhood and adolescence is influenced by endocrine and hypothalamic long-term sequelae. A legal status of the degree of disability (GdB), according to the German Social Code Book V that is worthy of support, provides financial means for psychosocial rehabilitation and participation of craniopharyngioma survivors. The aim of this study was to determine the association of clinical/psychosocial characteristics and quality of life (QoL) indicators with the resulting GdB. PATIENTS AND METHODS: HIT-Endo is a German registry study on craniopharyngioma patients aged ≤ 18 years at diagnosis and included before the year 2000. In a sample of 108 patients, the degree of disability and the association with endocrine, ophthalmological, neuropsychological and psychosocial parameters was analyzed after a mean follow-up period of 16 years (95% CI: 9.8-36.4). RESULTS: 44 patients (41%) did not receive a GdB, three patients (3%) received a GdB of 30-40, 43 patients (40%) a GdB of 50-90 and 18 patients (17%) the maximum GdB of 100. Higher GdB were associated with lower education, higher body mass index standard deviation and a higher degree of visual impairment and hypothalamic involvement of the craniopharyngeoma. Patients with a GdB of 100 reported loss in physical and cognitive function, as well as fatigue, dyspnea, and pain conditions, and limitations in social and occupational contexts. They further had a lower functional capacity (German daily life ability scale (FMH)) compared to those with a smaller GdB. CONCLUSION: The GdB is associated with psychosocial and physical impairments and reflects the long-term consequences of craniopharyngioma during childhood and adolescence. A low functional capacity (assessed by FMH) may indicate the eligibility for a high GdB in later life of craniopharyngioma survivors.

Return to work of Italian cancer survivors: A focus on prognostic work-related factors.

Return to work (RTW) enhances the general well-being and social participation of cancer survivors (CSs). To describe the predictive value of work-related factors on the RTW process of CSs. The work accommodations, the perceived workload, and the barriers and facilitations of RTW are also reported. This population-based cross-sectional survey was conducted in the Province of Reggio Emilia from July 2016 to July 2017. CSs who were 20-59 years old, first diagnosed with cancer, and employed at diagnosis were recruited. The majority of CSs (140/266, 53%) returned to work without difficulties, 42% reported difficulties, and 5% did not RTW. CSs who were shift workers (sex and age-adjusted Relative Risk [adj-RR] 1.30; 95% CI 0.94 -1.78) and who worked at night (adj-RR 1.36 95% CI 0.99 -1.86), in the evening (adj-RR 1.23; 95% CI 0.95 -1.57) and on Sundays (adj-RR 1.15; 95% CI 0.81 -1.63) perceived more difficulties. Physically demanding work and a long commute seemed to negatively impact RTW. Accommodations in work tasks (37%) or schedule (26%) were implemented. Workload was not acceptable for 18% of CSs. The main barriers concerned energy and drive functions, whereas remunerative employment was the foremost facilitation. Healthcare professionals should address work-related factors that might influence RTW with personalized interventions of vocational rehabilitation.

Tailoring work participation support for cancer survivors using the stages of change: perspectives of (health care) professionals and survivors

PurposeInterventions to support work participation in cancer survivors (CSs) have shown limited effectiveness. Applying a behavioral change framework (e.g., stages of change) could make work participation interventions for CSs more timely and tailored. We aimed to explore the application of the stages of change framework to work participation support for CSs and to generate stage-specific intervention content.MethodsEighteen experts (e.g., occupational physicians, reintegration consultants) were individually interviewed, and three focus groups with CSs (n = 6, n = 5, n = 4) were conducted. Data were analyzed along the six work-related behavioral change stages purported by the readiness for return to work framework, which is based on the stages of change.ResultsThe following themes were identified: (1) pre-contemplation: emotional support and staying connected—encourage contact with the employer/colleagues; (2) contemplation: considering return to work is stressful—facilitate the deliberation process; (3) preparation self-evaluative: assess current capabilities—seek guidance from, e.g., occupational physicians; (4) preparation behavioral: planning return to work—allow for personalized solutions and encourage supervised return to work; (5) uncertain maintenance: guard against overload—train self-efficacy strategies and communication tactics; and (6) proactive maintenance: accept and prepare for the long term.ConclusionsOur results support the potential utility of tailoring CSs’ work participation support along the stages of change.Implications for Cancer SurvivorsWe provided recommendations for intervention content and developed a stage-specific work participation intervention for CSs, the effectiveness of which will be evaluated in an upcoming randomized controlled trial.

Perceptions of Clinical Trial Participation in African American Cancer Survivors and Caregivers.

To explore the perceptions of African American survivors and caregivers about participation in clinical trials. 13 participants were enrolled and participated in one of the focus groups, and 11 participated in two focus groups. A qualitative descriptive study using a community-based participatory research approach. Focus groups guided by Freire's dialogic model explored the perceptions of African American patients with cancer about participation in clinical trials. Focus groups were audio recorded and transcribed. The analysis identified three main themes. The under- representation of African American patients in clinical trials contributes to racial health disparity by negatively affecting health outcomes and quality of care delivered to this population. Oncology nurses are at the forefront of cancer care and in the best position to advocate for individuals with cancer, particularly those who face health inequalities. Findings from this study guided the recommendations.

State of Rehabilitation Research in the Head and Neck Cancer Population: Functional Impact vs. Impairment-Focused Outcomes.

Management of head and neck cancer (HNC) typically involves a morbid combination of surgery, radiation, and systemic therapy. As the number of HNC survivors grows, there is growing interest in rehabilitation strategies to manage HNC-related comorbidity. In this review, we summarize the current state of HNC rehabilitation research. We have organized our review using the World Health Organization's International Classification of Function (ICF) model of impairment, activity, and participation. Specifically, we describe the current research on rehabilitation strategies to prevent and treat impairments including dysphagia, xerostomia, dysgeusia, dysosmia, odynophagia, trismus, first bite syndrome, dysarthria, dysphonia, lymphedema, shoulder syndrome, cervicalgia, cervical dystonia and dropped head syndrome, deconditioning, and fatigue. We also discuss the broader impact of HNC-related impairment by exploring the state of rehabilitation literature on activity, participation, psychosocial distress, and suicidality in HNC survivors. We demonstrate that research in HNC rehabilitation continues to focus primarily on impairment-driven interventions. There remains a dearth of HNC rehabilitation studies directly examining the impact of rehabilitation interventions on outcomes related to activity and participation. More high-quality interventional studies and reviews are needed to guide prevention and treatment of functional loss in HNC survivors.

Italian translation and cross-cultural validation of an assessment tool for participation in stroke survivors: the Frenchay Activities Index.

Participation needs to be assessed objectively, to state accurate rehabilitation objectives. The Frenchay Activities Index (FAI) is a widely used tool to measure participation in stroke patients. To date, no cross-culturally validated Italian version of FAI is available. This study provides a translation and cross-cultural adaptation of FAI into Italian, assessing its validity and reliability in sub-acute stroke patients. According to international guidelines, a multistep translation and cultural adaptation protocol of forward and backward translations was conducted by qualified linguists and independent native English translators and revised by a healthcare committee. Patients admitted to intensive inpatient rehabilitation after stroke were recruited. Structural validity, reliability (internal consistency, inter- and intra-rater reliability and measurement error), and construct validity were studied. One hundred and seventy-three patients were included in this study. No significant observations in terms of comprehensibility and conceptual equivalence of the FAI Italian version emerged. The exploratory factorial analysis revealed the presence of two subscales (i.e., domestic chores and work/leisure). The internal consistency resulted good for the first and second subscale (α = 0.821 and 0.716, respectively). Intra- and inter-reliability showed an ICC > 0.90 for both subscales. SEM = 5.75% and 2.33% and MDC = 15.85% and 6.48% were found for the first and second subscale, respectively. Construct validity of first subscale was satisfactory, as 100.0% a priori hypotheses were met, while for the second subscale it was moderate, as 66.6% a priori hypotheses were respected. FAI-I provides a tool for professionals to measure participation in Italian stroke patients in health and social care settings.

Abstract PD5-09: Work status changes and associated factors in a nation-wide sample of 1324 Norwegian long-term breast cancer survivors

Abstract Background: Little is known about work participation in breast cancer survivors (BCSs) beyond two years after diagnosis. This study aims to report work status at diagnosis and at eight years post-diagnosis in a nation-wide sample of BCSs, investigate factors associated with reduced work status, and report on self-perceived reasons for reduced work status or disability pension. Material and Methods: Women diagnosed with stage I-III BC at the age of 20-65 years in 2011 or 2012 were invited to participate (n=2,803), of which 49 % (n=1361) responded. The response rate was 49 % (n=1361). A final sample of 1324 BCSs with complete questionnaire information regarding work status were included in the present study. Logistic regression analyses were applied to identify factors associated with reduced work status. Results At diagnosis, 78% (n=1038) of the BCSs were in paid work, 12% received disability pension and 4 % held early retirement. At survey, 42% of the BCSs were in paid work, 26% held disability pension and 28% were retired. Of the 845 survivors who were in paid work at diagnosis and within working age at survey, 63% maintained their work status, while 37% reduced their work status. Living with children (OR 0.4, p=.007), older age (OR 1.2, p<.001), chemotherapy (OR 2.9, p=.013), three or more comorbid conditions (OR 2.2, p=.016), higher level of fatigue (OR 1.02, p<.001), symptoms of cognitive dysfunction (OR 0.9, p=.038) and higher degree of neuroticism (OR 1.2, p=.012) were associated with reduced work status. BC, complaints and late effects after BC were reported as the main or partial reason for reduced work status and disability. Conclusion Almost two thirds of BCSs in working age who were in paid work at diagnosis remained in the paid work force eight years later. Individual characteristics and various health complaints including fatigue end cognitive dysfunction were associated with reduced work status from diagnosis to survey. Evaluation and treatment of these conditions are warranted, with the ultimate aim of improving work maintenance in long-term BCSs. Citation Format: Synne-Kristin Hoffart Bøhn, Kathrine Vandraas, Cecilie E Kiserud, Alv A Dahl, Marianne Ewertz, Hanne Cathrine Lie, Ragnhild Falk, Kristin Valborg Reinertsen. Work status changes and associated factors in a nation-wide sample of 1324 Norwegian long-term breast cancer survivors [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr PD5-09.

Changes in physical activity and associations with quality of life among a global sample of cancer survivors during the COVID-19 pandemic.

PurposeMeeting physical activity (PA) guidelines (i.e., ≥ 150 min/week of aerobic PA and/or 2 days/week of resistance training) is beneficial for maintaining cancer survivors’ well-being. The impact of the COVID-19 pandemic on PA participation in cancer survivors and its association on quality of life (QoL) remains unknown. The purpose of this study was to compare PA levels prior to and during the COVID-19 pandemic, and examine the association between changes in PA and QoL in cancer survivors.MethodsA global sample of cancer survivors participated in a cross-sectional, online survey. Participants self-reported their PA participation before and during the pandemic using the Godin Leisure Time Exercise Questionnaire and QoL with the Functional Assessment of Cancer Therapy (FACT) scales. Paired t-tests compared PA before and during the pandemic. Analysis of covariance examined differences in QoL between PA categories: non-exercisers, inactive adopters, complete and partial relapsers, single and combined guideline maintainers.ResultsPA participation of cancer survivors (N = 488) significantly decreased during the pandemic (p’s < .001). Cancer survivors were classified as non-exercisers (37.7%), inactive adopters (6.6%), complete (13.1%) and partial (6.1%) relapsers, and single (23.8%) or combined (12.7%) guideline maintainers. Partial relapsers had significantly lower QoL and fatigue than inactive adopters, and combined guideline maintainers (p’s < .05) that were clinically meaningful.ConclusionPA decreased during the pandemic which has negative implications for QoL and fatigue in cancer survivors.Implications for Cancer SurvivorsPA is critical for maintaining QoL during the pandemic; therefore, behavioral strategies are needed to help cancer survivors adopt and maintain PA.

Characteristics and Challenges of Physical Fitness, Activities, and Social Participation of Childhood Cancer Survivors

Characteristics and Challenges of Physical Fitness, Activities, and Social Participation of Childhood Cancer Survivors

Agensi Perempuan Penyintas dalam Inisiatif Keadilan Transisi di Tingkat Lokal

This article will describe the contribution of women survivors of human rights violations in promoting transitional justice initiatives at the local or community level in Indonesia. In their marginal position, both as women and victims of human rights violations, the women survivors show their agencies to face social, political, cultural and structural barriers. The initiatives and participation of women survivors in Central Sulawesi, Aceh, and Yogyakarta Province, have contributed to the emergence of transitional justice models at the local level, such as apologies for victims, health assistance programs, scholarships, and truth-telling. These transitional justice initiatives at the local level not only fill the gap in the accountability that should be borne by the state, but they also strengthen the implementation of transitional justice mechanisms organized by the state or government, both at the local and national levels.

Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland

BackgroundResearch on germline genetic variants relies on enough eligible participants which is difficult to achieve for rare diseases such as childhood cancer. With self-collection kits, participants can contribute genetic samples conveniently from their home. Demographic and clinical factors were identified previously that influenced participation in mailed self-collection. People with pre-existing heritable diagnoses might participate differently in germline DNA collection which might render sampling biased in this group. In this nationwide cross-sectional study, we analysed predictive factors of participation in DNA self-collection including heritable diagnoses.MethodsWe identified childhood cancer survivors from the Swiss Childhood Cancer Registry for invitation to germline DNA self-sampling in September 2019. Participants received saliva sampling kits by postal mail at their home, were asked to fill them, sign an informed consent, and send them back by mail. Two reminders were sent to non-participants by mail. We compared demographic, clinical, and treatment information of participants with non-participants using univariable and multivariable logistic regression models.ResultsWe invited 928 childhood cancer survivors in Switzerland with a median age of 26.5 years (interquartile range 19-37), of which 463 (50%) participated. After the initial send out of the sampling kit, 291 (63%) had participated, while reminder letters led to 172 additional participants (37%). Foreign nationality (odds ratio [OR] 0.5; 95%-confidence interval [CI] 0.4-0.7), survivors aged 30-39 years at study versus other age groups (OR 0.5; CI 0.4-0.8), and survivors with a known cancer predisposition syndrome (OR 0.5; CI 0.3-1.0) were less likely to participate in germline DNA collection. Survivors with a second primary neoplasm (OR 1.9; CI 1.0-3.8) or those living in a French or Italian speaking region (OR 1.3; CI 1.0-1.8) tended to participate more.ConclusionsWe showed that half of childhood cancer survivors participated in germline DNA self-sampling relying completely on mailing of sample kits. Written reminders increased the response by about one third. More targeted recruitment strategies may be advocated for people of foreign nationality, aged 30-39 years, and those with cancer predisposition syndromes. Perceptions of genetic research and potential barriers to participation of survivors need to be better understood.Trial registrationBiobank: https://directory.bbmri-eric.eu/#/collection/bbmri-eric:ID:CH_HopitauxUniversitairesGeneve:collection:CH_BaHOP Research project: Clinicaltrials.gov: NCT04702321.

Developing Personas to Inform The Creation of Novel Interventions to Improve Participation Among People With Stroke During COVID-19

Research ObjectivesPeople living with disabilities have been found to experience reduced participation during the COVID-19 pandemic. In order to inform interventions to improve physical activity and social participation in stroke survivors, we created personas to inform the design and development of products targeting stroke patients during life-changing events such as pandemics after strokeDesignPersona development methodology using qualitative interview data. The personas were developed by mapping participants to behavioural variables identified from coded transcripts. After identifying behaviour patterns, characteristics and goals were synthesized.SettingVirtual-data collection via Zoom; community.ParticipantsCommunity-dwelling individuals who have had a stroke (n = 26) were recruited. We included participants 19 years of age or older and if they were able to communicate in English. Participants were excluded if they had moderate or severe cognitive impairment or aphasia.InterventionsN/A.Main Outcome MeasuresN/A.ResultsOur analysis identified 6 distinct personas that reflect participant behaviours and goals in regard to participation during COVID-19. 1) “The Community Provider” likes to feel involved and wants to engage in daily life. 2) “The Homebody” enjoys alone time but lacks a daily routine. This persona aims to feel motivated to accomplish personal goals. 3) “The Independent” seeks to be an active and integrated part of the community without physical or situational restrictions. 4) “The Lifestyle Person” wants to live the good life and do whatever they want, whenever they want. 5) “The Contributor” wants to feel needed and wants to be responsible for helping in the community. 6) “The Health-Literate Participator” wants to be on top of things and stay healthy for their family and themselves.ConclusionsThe personas highlight behaviours and goals in stroke patients towards physical activity and social participation during COVID-19. The personas will help guide the development of interventions to improve physical activity and social participation. The interventions will be developed based on the behaviours and goals of those living with stroke.Author(s) DisclosuresN/A.

Characterizing the Exercise Behaviour, Preferences, Barriers, and Facilitators of Cancer Survivors in a Rural Canadian Community: A Cross-Sectional Survey.

Barriers, facilitators, and motivators to exercise for cancer survivors living in urban settings are well described in the literature. However, there is a lack of comparable information for cancer survivors living in rural communities. We describe the exercise behaviours, barriers, facilitators, and motivators to exercise participation of cancer survivors living in a rural Canadian community. Adult cancer survivors with a primary address in a rural region of Ontario, Canada, who had visited a community hospital in the previous five years were mailed a cross-sectional survey assessing current exercise volume (minutes of moderate-to-vigorous aerobic and resistance exercise), as well as exercise preferences, barriers, and facilitators. Seventy-two survivors (mean age 65 years) completed the survey (16% response rate). A majority of respondents were diagnosed with breast cancer (49%) in the last 5 years (61%). Aerobic- and resistance-training guidelines for cancer survivors were met by 38% and 10% of respondents, respectively. Physical side effects were the most common barrier to exercise during treatment (65%) and post-treatment (35%). Being unaware of available exercise programs, time for exercise, distance to exercise services, and cost were commonly reported barriers during and post-treatment (reported by 10–22%). Respondents reported needing information from a qualified exercise professional (46%), access to a gym (33%) and exercise equipment (26%), and social support (25%) to facilitate exercise participation. Consistent with urban-based cancer survivors, most rural survivors surveyed in this study were not meeting the physical-activity guidelines and reported numerous exercise barriers. These findings can serve as a resource for this and similar rural communities when developing community-based exercise-support services for cancer survivors.

Clinical efficacy of aerobic exercise combined with computer-based cognitive training in stroke: a multicenter randomized controlled trial

ABSTRACT Purpose The objectives are to evaluate the effects of a sequential combination of aerobic exercise and cognitive training, compared with exercise or cognitive training alone, on cognitive function, physical function, daily function, quality of life, and social participation in stroke survivors with cognitive impairment. Methods This is a single-blind, parallel, randomized controlled trial. Stroke patients with mild cognitive impairment (n = 56) were randomly assigned to aerobic exercise training (n = 18), computerized cognitive training (n = 18), and the sequential combination of aerobic exercise and computerized cognitive training (n = 20) group. All groups underwent training 60 min/day, 3 days/week, for a total of 12 weeks. The primary outcomes included Montreal Cognitive Assessment (MoCA), Wechsler Memory Scale-Third Edition, and the Stroop color-word test. Secondary outcomes were the Timed Up and Go test, 6-Minute Walk Test, Functional Independence Measure, Lawton Instrumental Activities of Daily Living Scale, Community Integration Questionnaire, and Stroke Impact Scale. Results 56 participants completed the trial. Compared with a single type of aerobic exercise or cognitive training, the combined training group showed significant improvement in MoCA (P < .05, η2 = 0.13), and two sub-tests in WMS-III (both P’s < 0.05) following the intervention. However, no between-group differences were observed for physical functions, daily function, quality of life, and social participation measures. Conclusions The findings provide evidence for the potential synergistic intervention in stroke survivors. Future studies investigating the transfer effects and the optimal training parameters with a larger sample is needed.

Occupational Participation of Latinx Cancer Survivors and Family Caregivers Living in Long-Term Survivorship

Abstract Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation during survivorship is a product of cultural values, environmental influences, and occupational gains and losses. To promote occupational justice, the OT profession is called to deliver culturally tailored care to capitalize on this group's strengths and prepare them for daily participation. Primary Author and Speaker: Ricardo Daniel Ramirez Additional Authors and Speakers: Susan Magasi

Cognitive and Motor Predictors of Daily Life Monitoring for Stroke Survivors Using Mobile Health Technology

Abstract Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. We examined cognitive and motor factors predicting adherence to smartphone-based ecological momentary assessment (EMA) for monitoring daily life participation in stroke survivors. Cognitive flexibility and dexterity were significant predictors of EMA adherence. We derived cutoff values to differentiate survivors with high and low adherence. OTs may use them to guide the selection of survivors who can use mobile health technology to monitor poststroke functioning. Primary Author and Speaker: Shijia Li Additional Authors and Speakers: Stephen C. L. Lau, Joanne N. Chin Contributing Authors: Alex Wong

Social participation and depressive symptoms in older African American cancer survivors: a comparison with non-cancer subjects

Objectives African Americans are differentially affected by most cancers compared to other racial groups. Social participation has demonstrated beneficial effects on mental health in older adults with a history of cancer. The purpose of the present study is to examine and compare the effects of specific social participation activities on depressive symptoms among older African Americans with and without a history of cancer. Method The study sample included 2,000 older African Americans selected from the National Health and Aging Trends Study. Waves from 2011 to 2018 were used. Mixed-effects logistic regressions were applied to examine the effects of four social participation activities on depressive symptoms among older African Americans with or without a history of cancer. Results Among older African American who had a history of cancer, visiting family and friends and attending religious services were related to lower odds of depressive symptoms. However, among older African Americans without a history of cancer, joining organized activities and going out for enjoyment predicted lower odds of depressive symptoms. Conclusion Older African Americans with a history of cancer tend to benefit from visiting family and friends and attending religious services in coping with depressive symptoms. Mental health services for this group could focus interventions on promoting social participation activities with family, friends, and religious congregants.

Validation of a translated Chinese version of the Participation Strategies Self-Efficacy Scale: a cross-sectional study

Purpose To examine the psychometric properties of a Chinese version of the Participation Strategies Self-Efficacy Scale (PS-SES) among stroke survivors. Methods The PS-SES was translated into Chinese. A cross-sectional descriptive study was conducted with 336 stroke survivors recruited from the neurology departments of five hospitals in China. Reliability, concurrent validity, and construct validity of the scale were determined. Results The Chinese version of the PS-SES (PS-SES-C) showed good internal consistency and test–retest reliability, with a Cronbach’s α of 0.98 and an intraclass correlation coefficient of 0.79. There was a moderate to strong positive correlation between the PS-SES-C and Chinese version of the General Self-Efficacy Scale (r = 0.59, p < .001), positive correlations between the PS-SES-C and Chinese versions of the Modified Barthel Index (r = 0.59, p < .001), Rivermead Mobility Index (r = 0.70, p < .001), and Reintegration to Normal Living Index (r = 0.70, p < .001), and a negative correlation between the PS-SES-C and National Institutes of Health Stroke Scale (r = −0.63, p < .001). Known-group validity and factorial validity were also supported. Conclusions The PS-SES-C is a reliable and valid instrument for assessing self-efficacy in managing the participation of Chinese stroke survivors. Implications for rehabilitation Self-efficacy significantly predicts activity and participation in stroke survivors and is a major outcome measure in many stroke rehabilitation programmes. The translated Chinese version of the Participation Strategies Self-efficacy Scale is a valid and reliable tool to evaluate stroke survivors’ self-efficacy in managing participation. The Chinese version of the Participation Strategies Self-efficacy Scale can be used to assess stroke recovery among the Chinese population in clinical and research settings.

Recall of clinical trial participation and attrition rates in survivors of acute respiratory distress syndrome.

To measure the rate of recall of study participation and study attrition in survivors of acute respiratory distress syndrome(ARDS). In this ancillary study of the Re-evaluation of Systemic Early neuromuscular blockade(ROSE) trial, we measured the rate of study participation recall 3 months following discharge and subsequent study attrition at 6 months. We compared patient and hospital characteristics, and long-term outcomes by recall. As surrogate decision-makers provided initial consent, we measured the rate of patient reconsent and its association with study recall. Of 487 patients evaluated, recall status was determined in 386(82.7%). Among these, 287(74.4%) patients recalled participation in the ROSE trial, while 99(25.6%) did not. There was no significant difference in 6-month attrition among patients who recalled study participation (9.1%) and those who did not (12.1%) (p = 0.38). Patient characteristics were similar between groups, except SOFA scores, ventilator-free days, and length of stay. 330(68%) were reconsented. Compared to those not reconsented, significantly more patients who were reconsented recalled study participation(78% vs. 66%;p = 0.01). One in 4 ARDS survivors do not recall their participation in a clinical trial during hospitalization 3 months following hospital discharge, which did not influence 6-month attrition. However, more patients recall study participation if reconsent is obtained.

Contextualizing Risk Perception and Trust in the Community-Based Response to Ebola Virus Disease in Liberia.

The 2014–15 Ebola Virus Disease (EVD) outbreaks in Western Africa became widespread in primarily three countries, Guinea, Liberia, and Sierra Leone. Unlike all previous outbreaks in Central and East Africa, which were confined to rural areas, the virus spread rapidly through West Africa as a result of transmission through high-density urban centres coupled with the effects of public distrust in outbreak response teams and local government officials. Objective: In this study, we examine the EVD epidemic in Liberia, the first country to implement a community-based response that led to changes in the trajectory of the epidemic. The focus on the role of community-based initiatives in outbreak response is often neglected in conventional epidemiological accounts. In this light, we consider the manner in which community-based strategies enabled a more effective response based on the establishment of better trust relations and an enhanced understanding of the risks that EVD posed for the community. Methodology: We conducted qualitative research in five distinct communities in Liberia three years after the outbreaks subsided. Data collection procedures consisted of semi-structured interviews and focus group discussions with residents. Results: We found that the implementation of a community-based response, which included the participation of Ebola survivors and local leaders, helped curb and ultimately end the EVD epidemic in Liberia. As community members became more directly involved in the EVD response, the level of trust between citizens, local officials, and non-governmental organization response teams increased. In turn, this led to greater acceptance in abiding to safety protocols, greater receptiveness to risk information, and changes in mobility patterns—all of which played a significant role in turning the tide of the epidemic.