Reasons for non-participation in cancer rehabilitation: a scoping literature review.

BACKGROUND: Rehabilitation plays an important role in addressing the many challenges of living with cancer, but a large proportion of people with cancer do not participate in available cancer rehabilitation. Hence, reasons for non-participation in cancer rehabilitation need to be explored. OBJECTIVE: The present study undertakes a scoping review of research examining reasons for non-participation in cancer rehabilitation among people with cancer. DESIGN: A systematic search was conducted in PubMed, Scopus and CINAHL for articles published until July 2023. Included studies were hand searched for relevant references and citations. ELIGIBILITY CRITERIA: Method: Studies with qualitative, quantitative or mixed-method design. POPULATION: Studies targeting adults (> 18) living with cancer, not participating in rehabilitation. Program type: The review included all studies defining program as rehabilitation but excluded clinical trials. OUTCOME: Studies examining reasons for non-participation in available rehabilitation. DATA EXTRACTION: The extracted data included author(s)/year of publication, aim, population, information, rehabilitation type and main reasons for non-participation. RESULTS: A total of nine studies were included (n = 3 quantitative, n = 2 qualitative, n = 4 mixed methods). Reasons for non-participation included physical, psychosocial and practical aspects. The main reason across studies was 'no need for public support' related to receiving sufficient support from family and friends. All studies focused on individual reasons, and structural conditions were rarely present. CONCLUSION: Research within this field is sparse. Future research should explore how individual reasons for non-participation relate to structural conditions, especially among people in socially disadvantaged positions living with cancer.

Disentangling the reasons why older adults do not readily participate in cancer trials: a socio-epidemiological mixed methods approach.

BACKGROUND: Few studies of the under-representation of older adults in cancer clinical trials (CTs) have encompassed the entire pathway from a trial being available in a cancer centre to the patient's invitation to participate and then agreement or refusal to participate. OBJECTIVES: The study's primary objective was to evaluate CT non-invitation and refusal rates. The secondary objectives were to identify factors associated with non-invitation and refusal and to assess experiences of CT participation from the patients' and professionals' perspectives. METHODS: Here, we used mixed methods and a socio-epidemiological approach to analyse reasons for the non-participation of eligible older patients with a solid cancer in cancer CTs in France. RESULTS: We found that non-invitation and low CT participation are mainly related to the patients' sociodemographic characteristics and living conditions (such as social isolation, being single, divorced or widowed, not having children and the absence of close family members) and the healthcare professionals' perceptions of insufficient informal support or a high homecare requirement. CONCLUSION: Our results suggest that efforts to increase fair inclusion and the participation of older adults in CTs should target the physician-patient relationship, the medical profession and hospital funding, rather than the patient alone.

Barriers to recruitment into emergency department-initiated palliative care: a sub-study of a multi-site, randomized controlled trial.

BACKGROUND: Emergency department (ED) visits among older adults are common near the end of life. Palliative care has been shown to reduce ED visits and to increase quality of life among patients, but recruitment into these programs is often challenging. This descriptive analysis explores the barriers to enrolling seriously ill patients scheduled for discharge from the ED into palliative care research. METHODS: This descriptive sub-study aims to assess the reasons why patients with advanced illness scheduled for discharge home from 11 EDs across the United States decline to participate in Emergency Medicine Palliative Care Access (EMPallA), a Phase IV randomized controlled trial (RCT) comparing two modes of palliative care delivery. Our aim was to understand why patients decline to enroll to improve future recruitment rates and expand care for patients discharged home from the ED. Research coordinators documented reasons that patients declined to enroll in the larger EMPallA trial; reasons for refusing participation were independently analyzed by two researchers to identify overarching themes. RESULTS: Enrollment rate across all sites was 45%; of the 504 eligible patients who declined participation, 47% (n = 237) declined for reasons related to illness severity. 28% of refusals (n = 143) were related to the mode of palliative care delivery, while 24% (n = 123) were due to misconceptions or stigma related to palliative care. Less commonly, patients refused due to general research barriers (16.5%), family/caregiver barriers (11.7%), and physician-related barriers (< 1%). CONCLUSIONS: Patients with advanced illnesses presenting to the ED often refuse to participate in palliative care research due to the severity of their illness, the mode of care delivery, and misconceptions about palliative care. In contrast with other studies, our study found minimal physician gatekeeping, which may be the result of both changing attitudes toward palliative care and the nature of the ED setting. Robust training programs are crucial to overcome these misconceptions and to educate patients and providers about the role of palliative care. Future palliative care programs and study designs should recognize the burden this vulnerable population endures and consider alternative modes of care delivery in an effort to increase participation and enrollment. CLINICAL TRIALS REGISTRATION: NCT03325985 , October 30, 2017.

A qualitative study of physicians' conscientious objections to medical aid in dying.

BACKGROUND: Under Quebec's Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated. AIM: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients' medical aid in dying requests. DESIGN/PARTICIPANTS: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians' motives for their conscientious objections and the reasons behind it. RESULTS: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying. CONCLUSION: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.

MR imaging of the brain in large cohort studies: feasibility report of the population- and patient-based BiDirect study.

OBJECTIVES: To describe the implementation and protocol of cerebral magnetic resonance imaging (MRI) in the longitudinal BiDirect study and to report rates of study participation as well as management of incidental findings. METHODS: Data came from the BiDirect study that investigates the relationship between depression and arteriosclerosis and comprises 2258 participants in three cohorts: 999 patients with depression, 347 patients with manifest cardiovascular disease (CVD) and 912 population-based controls. The study program includes MRI of the brain. Reasons for non-participation were systematically collected. Incidental findings were categorized and disclosed according to clinical relevance. RESULTS: At baseline 2176 participants were offered MRI, of whom 1453 (67 %) completed it. Reasons for non-participation differed according to cohort, age and gender with controls showing the highest participation rate of 79 %. Patient cohorts had higher refusal rates and CVD patients a high prevalence of contraindications. In the first follow-up examination 69 % of participating subjects completed MRI. Incidental findings were disclosed to 246 participants (17 %). The majority of incidental findings were extensive white matter hyperintensities requiring further diagnostic work-up. CONCLUSIONS: Knowledge about subjects and sensible definition of incidental findings are crucial for large-scale imaging projects. Our data offer practical and concrete information for the design of future studies. KEY POINTS: • Willingness to participate in MRI is generally high, also in follow-up examinations. • Rates of refusal and prevalence of contraindications differ according to subject characteristics. • Extensive white matter hyperintensities considerably increase the disclosure rates of incidental findings. • MRI workflow requires continuous case-by-case handling by an interdisciplinary team.

A systematic review of reasons for gatekeeping in palliative care research.

BACKGROUND: When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies. AIM: To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research. DESIGN: A 'Review of Reasons' based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis. DATA SOURCE: PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded. RESULTS: Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included 'difficulty with disclosure of health status', 'fear of burdening the patient's relatives', 'doubts about the importance or quality of the study', 'reticent attitude towards research and (research) expertise' and 'logistics'. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness. CONCLUSION: Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients' perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research.

[Factors influencing the choice of nondonor families in a French organ-harvesting center]. / Analyse des raisons motivant le refus du don d'organes par les familles de patients en état de mort encéphalique dans un centre régional de prélèvement.

OBJECTIVES: Report the reasons that lead families to refuse organ donation during their close solicitation by hospital coordination. MATERIAL AND METHODS: A retrospective study was conducted between 2012 and 2015, including 148 (34%) refusal of organ donation among 426 patients identified in a state of brain death. A questionnaire of the family was completed for each interview. Collected data concerned patient characteristics, cause of death, description of the interview and reasons for refusal. A descriptive statistical analysis was performed. RESULTS: The median age of patients was 50 years with a sex ratio of 1.4 men to 1 woman. The most common reason for non-donor family was the desire to maintain the integrity of the body of the patient (28%) followed by a religious order pattern (11%), brutality and suddenness of death (9%), the denial of death (6%) and early age of the donor (5%). In 39% of cases, the family said that the donor had expressed a written or oral refusal in his lifetime. CONCLUSION: A better understanding of the reasons leading to the refusal of non-donor family could provide assistance to the medical team on actions to general public with the aim to reduce the refusal rate. LEVEL OF EVIDENCE: 4.

Medical Errors and Barriers to Reporting in Ten Hospitals in Southern Iran.

BACKGROUND: International research shows that medical errors (MEs) are a major threat to patient safety. The present study aimed to describe MEs and barriers to reporting them in Shiraz public hospitals, Iran. METHODS: A cross-sectional, retrospective study was conducted in 10 Shiraz public hospitals in the south of Iran, 2013. Using the standardised checklist of Shiraz University of Medical Sciences (referred to the Clinical Governance Department and recorded documentations) and Uribe questionnaire, we gathered the data in the hospitals. RESULTS: A total of 4379 MEs were recorded in 10 hospitals. The highest frequency (27.1%) was related to systematic errors. Besides, most of the errors had occurred in the largest hospital (54.9%), internal wards (36.3%), and morning shifts (55.0%). The results revealed a significant association between the MEs and wards and hospitals (p < 0.001). Moreover, individual and organisational factors were the barriers to reporting ME in the studied hospitals. Also, a significant correlation was observed between the ME reporting barriers and the participants' job experiences (p < 0.001). CONCLUSION: The medical errors were highly frequent in the studied hospitals especially in the larger hospitals, morning shift and in the nursing practice. Moreover, individual and organisational factors were considered as the barriers to reporting MEs.

Factors associated with clinical trial screening failures in gynecologic oncology.

OBJECTIVE: Low enrollment of adult cancer patients in clinical trials is an ongoing challenge in cancer research. We sought to determine factors associated with clinical trial screening failures in women with gynecologic malignancies at a large urban university health system. METHODS: A retrospective review was conducted of women with gynecologic malignancies who presented to an urban university system between 12/2009 and 12/2012. Data collected included demographic, clinico-pathologic and trial-related factors, as well as reasons for non-participation. RESULTS: Two hundred twenty-one patients were eligible for a clinical trial. Of these, 44% participated while 56% did not. There were more screening failures when trials were offered at the time of primary treatment than at recurrence (62% vs. 38%, p=0.001). There was no significant difference in participation based on age, ethnicity, hospital setting, payor status, family history, comorbidities, prior treatment, substance abuse, recent surgery or trial type. Of the non-participants, 62% declined the study due to perceived harm and 10% due to socio-economic barriers while 20% were excluded due to co-morbidities and 8% due to noncompliance. CONCLUSIONS: Significantly more screening failures for clinical trials occurred when trials were offered at the time of primary treatment. The majority of patients declined based on perceived harm from enrolling in a clinical trial, although 20% of eligible patients were not offered enrollment despite not meeting any exclusion criteria. Our findings underscore the importance of appropriate counseling when offering clinical trials, as well as overcoming physician biases in deciding who is an appropriate candidate.

[Family refusal of organ donation: a retrospective study in a French organ procurement center]. / Opposition des familles aux dons d'organes: analyse rétrospective des causes de refus dans un centre régional de prélèvement.

OBJECTIVES: In France, organ donation refusal rates approach 32% of eligible brain deaths. Outright family refusal represents the primary barrier reason for declining organ donation. This retrospective study evaluated factors influencing this decision. MATERIAL AND METHODS: A retrospective chart review at Lille Hospital, France, was conducted on brain-death patients eligible for organ donation between 2010 and 2011. Data were collected regarding patient characteristics, death conditions and reasons for refusal based upon family interview. Descriptive statistic analyses were conducted to identify circumstances associated with family refusal. RESULTS: Of 227 eligible organ donors identified, 70 families (30.8%) refused organ donation. The most frequent reason for refusal was desire to keep the body's wholeness (46.3%), followed by religion (16.4%), mistrust of the medical community (13.4%), and revolt against society (6%). The most common causes of death associated with refusal were brutality and suddenness of death (44.8%), early age (23.9%), denial of death (17.9%), and the family culpability (11.9%). In 30% of cases, the family followed the deceased's wishes before his death. CONCLUSION: Family refusal remains a significant factor associated with the approximately one third of declined eligible organ donations. This retrospective analysis suggested that the most important cause for refusal was a desire to keep the body's wholeness, and the brutality and suddenness of the potential donor's death. Additional research addressing these factors, and their underlying causes, paired with measures to improve professional training and public awareness are warranted to improve organ donation rates.

Responders versus nonresponders in a dementia study of the oldest old: the 90+ study.

Because of difficulties in finding, recruiting, and diagnosing dementia in the oldest old (ages ≥90 years), most incidence studies include few very elderly persons, and little is known about the characteristics of those who refuse participation. In a California longitudinal study of dementia and aging (The 90+ Study, 2003-2011), we compared nonresponders with responders with regard to information collected 20 years earlier and the impression of dementia as determined during telephone recruitment. Of 1,815 eligible subjects, 1,514 (83%) joined the study, 182 refused, and 119 could not be contacted. Responders did not differ from nonresponders by sex or previously collected medical history or lifestyle behaviors. Recruiters' impressions of dementia were similar in responders and nonresponders who refused (35% and 38%), and among responders, impressions of dementia showed high positive predictive value (95%) but low sensitivity (51%) for a diagnosis of dementia made during the study. Although epidemiologic studies among the very old have the potential for significant nonresponse bias due to a high proportion of frail, ill, and cognitively impaired persons, strategies can improve response rates to over 80%. Classifying nonresponders on cognitive ability at recruitment, though crude, will give some idea of the selective bias in dementia prevalence and incidence estimates introduced by nonresponse due to cognitive status.

COVID-19 disease and vaccination in pregnancy: understanding knowledge, perceptions and experiences among pregnant women and community leaders in Uganda.

BACKGROUND: We investigated pregnant women and community leaders' knowledge, perceptions and experiences of the coronavirus disease 2019 (COVID-19) vaccination program during pregnancy in Uganda and how this changed over the course of the pandemic. METHODS: We conducted 20 in-depth interviews (IDIs) and two group discussions (GDs) with pregnant women and four GDs with community leaders in Kawempe division of Kampala, Uganda. The first round of IDIs/GDs were carried out in March 2021. In July 2021, telephone IDIs were conducted with 7 pregnant women and 10 community leaders randomly selected from first-round interview participants. Themes were analysed deductively drawing codes from the topic guides. RESULTS: In the first round, the majority of participants thought COVID-19 was not real because of misconceptions around government messaging/motivation and beliefs that Africans would not be affected. In the second round, participants recognised COVID-19 disease, because of rising case numbers and fatalities. There was increased awareness of the benefits of the vaccine. However, pregnant women remained unsure of vaccine safety and quality, citing side effects like fevers and general body weakness. Role models and coherent public health messaging and healthcare workers were key enablers of vaccine uptake. CONCLUSIONS: Targeted and sustained COVID-19 communication and engagement strategies are needed, especially for pregnant women and others in their communities, to improve vaccine confidence during outbreaks.

Path Analysis of RCT Recruitment: Secondary Analysis of Results from a Systematic Review.

We examine recruitment processes for 71 pragmatic and comparative effectiveness trials identified in a systematic review, using path analysis to examine rates of refusal to screen, test, and consent to trial participation. Our analysis suggests that refusal rates might be on net slightly higher if potential subjects are screened or asked to undergo physical eligibility tests, but this was not significant in our sample of trials (p = .11 by Mann-Whitney test). We find that rates of refusing to provide informed consent are much lower for trials in which subjects have agreed to screening or testing (odds ratio = 0.40, Wilcoxon rank-sum z = 2.67, p = .008). We also observe that the overwhelming majority of trials examined secured consent after determining eligibility, even in trials involving screening or testing activities. The ethical implications and areas for future research are discussed.

Decision-Making And Selection Bias in Four Observational Studies on Duchenne and Becker Muscular Dystrophy.

BACKGROUND: Natural history data are essential for trial design in Duchenne (DMD) and Becker muscular dystrophy (BMD), but recruitment for observational studies can be challenging. OBJECTIVE: We reviewed reasons why patients or caregivers declined participation, and compared characteristics of participants and non-participants to assess possible selection bias in four observational studies, three on DMD and one on BMD. METHODS: Three pediatric DMD studies focused on cross-sectional cognitive function and brain MRI (DMDbrain, n = 35 and DMDperfusion, n = 12), and on longitudinal upper extremity function and muscle MRI (DMDarm, n = 22). One adult BMD study assessed longitudinal functioning (n = 36). Considerations for non-participation were retrospectively reviewed from screening logs. Age, travel-time, DMD gene mutations and age at loss of ambulation (DMDarm and BMD study only), of participants and non-participants were derived from the Dutch Dystrophinopathy Database and compared using nonparametric tests (p < 0.05). RESULTS: The perceived burden of the protocol (38.2%), use of MRI (30.4%), and travel-time to the study site (19.1%) were the most frequently reported considerations for non-participation. Only few patients reported lack of personal gain (0.0- 5.9%). Overall, participating patients were representative for the studied sub-populations, except for a younger age of DMDarm study participants and a complete lack of participants with a mutation beyond exon 63. CONCLUSION: Optimizing patient involvement in protocol design, improving MRI experiences, and integrating research into clinics are important factors to decrease burden and facilitate participation. Nationwide registries are essential to compare participants and non-participants and ensure representative observational research. Specific effort is needed to include patients with distal mutations in cognitive studies.

Mapping non-response in a prevention program for cardiometabolic diseases in primary care: How to improve participation?

Non-response in prevention programs for cardiometabolic diseases (CMD) in primary care is often overlooked. The aim for this study was to define factors that influence the primary response to a selective CMD prevention program and to determine response-enhancing strategies that influence the willingness to participate. We conducted a non-response analysis within a randomized controlled trial evaluating a selective CMD prevention program, the study was conducted from 2013 to 2018 in Netherlands. A random sample of 5616 patients from 15 general practices were invited to complete a risk score (RS) as initial step of the program. Non-responders received an additional questionnaire. The response on the risk score was 51% (n = 2872). From the 3558 non-response questionnaires sent, 786 (22%) were returned. In a multivariable multilevel regression analysis smoking was independently associated with non-response. Of all reported reasons for non-response 'forgot/no time' accounted for 45%. In total, 73% of the non-responders indicated to reconsider participation when approached differently. A personal approach by the patients' own GP, using advertisements and informative campaigns are potentially the best methods to enhance the response. Although a relatively high proportion did not respond to the invitation for the risk score, the majority of them indicated to be willing to participate if a different invitation strategy would be used. With more time and energy, response rates for CMD prevention programs could possibly increase substantially. A next logical step in this process is to test potential response enhancing strategies in research setting.

The Effectiveness of Smoking Prevention Module Towards Knowledge and Smoking Refusal Skills among Adolescents in Kota Bharu, Kelantan, Malaysia.

OBJECTIVE: To study the effectiveness of the smoking prevention module towards knowledge on smoking and its harmful effects and smoking refusal skills among secondary school students in Kelantan, Malaysia. METHODS: A quasi experimental interventional study involving 166 non-smokers adolescents, aged 13 to 14 years old were carried out in two schools located in two different suburbs. Both schools had equal number of participants. One school was given the smoking prevention module for intervention while the control school only received the module after the study had been completed. The knowledge on smoking and its harmful effects and smoking refusal skill score were assessed using a set of validated Malay questionnaires at baseline, two weeks and eight weeks after the intervention. Repeated measure ANCOVA was used to analyse the mean score difference of both groups at baseline and after intervention. RESULT: Baseline analysis shows no significant difference in knowledge score between the study groups (p = 0.713) while post intervention, it shows significant inclination of knowledge score in intervention group and the difference was significant after controlling the gender [F(df) = 15.96(1.5), p <0.001]. The mean baseline for refusal skills score in the control and intervention groups were 30.89(6.164) and 28.02(6.241) respectively (p= 0.003). Post intervention, there is a significant difference in the crude mean and the estimated marginal means for smoking refusal skills score between the two groups after controlling for sex [F(df) = 5.66(1.8), p = 0.005]. CONCLUSION: This smoking prevention module increased the level of knowledge on smoking and its harmful effects and smoking refusal skill among the secondary school students. Thus, it is advocated to be used as one of the standard modules to improve the current method of teaching in delivering knowledge related to harmful effects of smoking and smoking refusal skill to the adolescents in Malaysia.
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Barriers to the non-acceptance of cervical cancer screenings (pap smear test) in women of childbearing age in a rural area of Peru.

INTRODUCTION: According to recent statistics, there is a high percentage of refusal of cervical cancer screening using the Pap smear test by women in rural communities in developing countries such as Peru. There are few studies on the reasons to explain said refusal in this country. The objective of this study was to determine the barriers related to the non-acceptance of cervical cancer screening using the Pap smear test in women of childbearing age from a rural Peruvian community. METHODS: Cross-sectional study, with a total of 892 women of childbearing age from the rural Peruvian community of Marián, Huaraz province, Ancash region, who did not accept screening for cervical cancer using the Pap smear test during their care at the Marián Health Centre. A questionnaire given from September 2017 to April 2018 was used. The information was processed with the statistics programme for social science 22.0 programme, using the Chi-square statistical test. RESULTS: For 4-6 years, 52.5% of women refused cervical cancer screening using the Pap smear test. The barriers that showed a statistically significant relationship to the non-acceptance of cervical cancer screening using the Pap test were socio-demographic (age, marital status, education level, occupation and home income) and institutional barriers (counselling for cervical cancer screening, importance of the gender of health personnel administering the screening, history of mistreatment by health personnel, fear or embarrassment of the screening procedure and a delay in sending the results) (p < 0.05); while a history of sexually transmitted infections and a feeling of physical well-being in sexual and reproductive health were the only related reproductive barriers (p <0.05), this was not demonstrated with the age of first sexual activity, number of sexual partners, age of first pregnancy and total number of pregnancies (p > 0.05). CONCLUSIONS: Socio-demographic and institutional barriers are related to the non-acceptance of cervical cancer screening using the Pap test in women of childbearing age in the rural Peruvian community of Marián, with a lesser emphasis on reproductive barriers. With this in mind, we recommend undertaking broader studies in populations of different age groups, which should be oriented towards the design and application of preventive/promotional programmes by health institutions to promote the participation of community workers with the goal of aiding the identification and control of said barriers, reducing the refusal of cervical cancer screenings by women from rural areas.

Recusa familiar para doação de córneas para transplante: fatores associados e tendência / Negativa familiar para donación de córneas para trasplante: factores asociados y tendencia / Family refusal to donate a cornea for transplantation: associated factors and trends

Resumo Objetivo Analisar a recusa familiar de doação de córnea para transplante em uma Organização de Procura de Órgãos. Métodos Estudo quantitativo do tipo transversal sobre as recusas de córnea de doadores em situação de morte encefálica. A fonte de dados foi constituída pelos Termos de Autorização de Doação de Órgãos e Tecidos firmados entre janeiro de 2001 a dezembro de 2020 em uma Organização de Procura de Órgãos. Os dados foram coletados, tabulados e analisados de forma descritiva e inferencial. O presente estudo foi aprovado pelo Comitê de Ética em Pesquisa. Resultados Dos 2.447 Termos de Autorização de Doação de Órgãos e Tecidos firmados no período, 620 (25.34%) recusaram a doação de córneas. Com relação à tendência temporal de recusas de doação de córneas, o único período que apresentou significância foi de 2001 a 2009, quando as faixas etárias de zero a 11 anos e 12 a 19 anos demonstraram tendência decrescente, e a faixa etária maior ou igual a 60 anos, mostrou-se crescente. No período total de 2001 a 2020, as faixas etárias dos 20 a 40 anos, 41 a 59 anos e maior ou igual a 60 anos apresentaram, 48%, 59% e 73%, respectivamente, menores chances de recusa da doação de córneas. Conclusão A faixa etária apresentou associação com a recusa, tendo em vista que os indivíduos de maior idade apresentaram maiores índices.

Resumen Objetivo Analizar la negativa familiar de donación de córneas para trasplante en una Organización de Búsqueda de Órganos. Métodos: Estudio cuantitativo tipo transversal sobre la negativa de córnea de donantes en situación de muerte encefálica. La fuente de datos estuvo compuesta por los Términos de Autorización de Donación de Órganos y Tejidos firmados entre enero de 2001 y diciembre de 2020 en una Organización de Búsqueda de Órganos. Se recopilaron los datos, luego se tabularon y se analizaron de forma descriptiva e inferencial. El presente estudio fue aprobado por el Comité de Ética en Investigación. Resultados De los 2447 Términos de Autorización de Donación de Órganos y Tejidos firmados en el período, 620 (25,34 %) negaron la donación de córneas. Con relación a la tendencia temporal de negativas de donación de córneas, el único período que presentó significación fue de 2001 a 2009, cuando los grupos de edad de 0 a 11 años y de 12 a 19 años demostraron una tendencia decreciente, y el grupo de edad mayor o igual a 60 años se mostró creciente. En el período total de 2001 a 2020, los grupos de edad de 20 a 40 años, de 41 a 59 años y mayor o igual a 60 años presentaron un 48 %, un 59 % y un 73 %, respectivamente, menor probabilidad de negativa de donación de córneas. Conclusión El grupo de edad presentó relación con la negativa, considerando que los individuos de mayor edad presentan mayores índices.

Abstract Objective To analyze family refusals to donate a cornea for transplantation in an Organ Procurement Organization. Methods This was a quantitative cross-sectional study on corneal donation refusals from potential brain-dead donors. The data source was based on the Terms of Authorization for Donation of Organs and Tissues signed from January 2001 to December 2020 in an Organ Procurement Organization. Data were collected, tabulated, and analyzed in a descriptive and inferential manner. The present study was approved by the Research Ethics Committee. Results Of the 2,447 Terms of Authorization for Donation of Organs and Tissues signed in the above period, 620 (25.34%) of them refused to donate a cornea. Regarding the time trend of corneal donation refusals, the period 2001-2009 was the only one that showed significance, when the 0-11 and 12-19 age groups showed a decreasing trend and that of 60 years or older showed an increasing trend. In the period 2001-2020, the age groups of 20-40, 41-59, and 60 years or older had lower rates of refusal to donate a cornea (48%, 59%, and 73%, respectively). Conclusion The age group is associated with refusal because older individuals had the highest refusal rates.

It's hard to reach the "hard-to-reach": the challenges of recruiting people who do not access preventative healthcare services into interview studies.

In this article, we discuss the challenges faced in recruiting "hard-to-reach" groups for interview studies, specifically those who do not access preventative healthcare services. We do this by reflecting on the varying success of different recruitment methods we have used in two recent studies; one investigating ethnic disparities in human papillomavirus vaccination uptake and another exploring difference in cervical screening non-participation. Engaging new community groups to help with recruitment proved particularly difficult, as did recruiting online. Our most successful recruitment methods included recruiting through community groups with whom we had previously established relationships, recruiting through schools and re-contacting participants who previously completed a related survey. We conclude that successful recruitment is dependent on study awareness and engagement. We urge others to be transparent in reporting recruitment methods in order to benefit the qualitative research community and suggest that details are published as supplementary material alongside qualitative articles in future.

Retention strategies for health disparities preventive trials: findings from the Early Childhood Caries Collaborating Centers.

OBJECTIVES: To identify successful strategies for retention of participants in multiyear, community-based randomized controlled trials (RCTs) aiming to reduce early childhood caries in health disparities populations from diverse racial/ethnic backgrounds and across diverse geographic settings. METHODS: Four RCTs conducted by the Early Childhood Caries Collaborating Centers (EC4), an initiative of the National Institute of Dental and Craniofacial Research, systematically collected information on the success of various strategies implemented to promote participant retention in each RCT. The observational findings from this case series of four RCTs were tabulated and the strategies rated by study staff. RESULTS: Participant retention at 12 months of follow-up ranged from 52.8 percent to 91.7 percent, and at 24 months ranged from 53.6 percent to 85.9, across the four RCTs. For the three RCTs that had a 36-month follow-up, retention ranged from 53.6 percent to 85.1 percent. Effectiveness of different participant retention strategies varied widely across the RCTs. CONCLUSIONS: Findings from this case series study may help to guide the design of future RCTs to maximize retention of study participants and yield needed data on effective interventions to reduce oral health disparities.