Randomized experimental population-based study to evaluate the acceptance and completion of and preferences for cervical cancer screening.

Cervical cancer has high incidence and mortality rates, especially in less-developed countries. Prevention methods are well established, but there are still barriers preventing some Brazilian women from undergoing a Pap sample. The objective of the study was to evaluate the acceptance, preferences and completion of four screening methods. This has an experimental design (community trial). A total of 164 participants who had never had a Pap sample or had not had one for more than three years were included. The city's urban area was stratified by census tracts and divided according to income and education levels. Women belonging to the lower-income strata were considered in the study. Random blocks were numbered into five intervention groups (Group 1- Pap sample at the hospital; Group 2- Pap sample in the mobile unit; Group 3- urine self-collection; Group 4- vaginal self-collection; Group 5- woman's choice). Only 164 women met all of the eligibility criteria (15.3%). Most of them accepted the assigned method (92%), but only 84% of the women completed the collection step. The acceptance rates were as follows: Group 1 (100%), Group 2 (64.5%), Group 3 (100%) and Group 4 (91.4%). In Group 5, the women's preferences were distributed as follows: examination performed at the hospital, 13 women (33.3%); examination performed at the mobile unit, 11 women (28.2%); urine self-collection, 11 women (28.2%); and vaginal self-collection, 4 women (10.3%). This study suggests that methods that allow cervical sampling collected near the women's domicile might improve the acceptance and completion of preventive tests. This finding is relevant for the development of new cervical cancer screening strategies.

Women's caesarean section preferences: A multicountry cross-sectional survey in low- and middle-income countries.

OBJECTIVE: To measure the proportion of women's preferences for CS in hospitals with high caesarean section rates and to identify related factors. DESIGN: A cross-sectional hospital-based postpartum survey was conducted. We used multilevel multivariate logistic regression and probit models to analyse the association between women's caesarean section preferences and maternal characteristics. Probit models take into account selection bias while excluding women who had no preference. SETTING: Thirty-two hospitals in Argentina, Thailand, Vietnam and Burkina Faso were selected. PARTICIPANTS: A total of 1,979 post-partum women with no potential medical need for caesarean section were included among a representative sample of women who delivered at each of the participating facilities during the data collection period. FINDINGS: The overall caesarean section rate was 23.3 %. Among women who declared a preference in late pregnancy, 9 % preferred caesarean section, ranging from 1.8 % in Burkina Faso to 17.8 % in Thailand. Primiparous women were more likely to prefer a caesarean section than multiparous women (ß=+0.16 [+0.01; +0.31]; p = 0.04). Among women who preferred caesarean section, doctors were frequently cited as the main influencers, and "avoid pain in labour" was the most common perceived benefit of caesarean section. KEY CONCLUSIONS: Our results suggest that a high proportion of women prefer vaginal birth and highlight that the preference for caesarean section is linked to women's fear of pain and the influence of doctors. These results can inform the development of interventions aimed at supporting women and their preferences, providing them with evidence-based information and changing doctors' behaviour in order to reduce the number of unnecessary caesarean sections. CLINICAL TRIAL REGISTRY: The QUALI-DEC trial is registered on the Current Controlled Trials website (https://www.isrctn.com/) under the number ISRCTN67214403.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Do women prefer caesarean sections? A qualitative evidence synthesis of their views and experiences.

BACKGROUND: Caesarean sections (CS) continue to increase worldwide. Multiple and complex factors are contributing to the increase, including non-clinical factors related to individual women, families and their interactions with health providers. This global qualitative evidence synthesis explores women's preferences for mode of birth and factors underlying preferences for CS. METHODS: Systematic database searches (MEDLINE, EMBASE, CINAHL, PsycINFO) were conducted in December 2016 and updated in May 2019 and February 2021. Studies conducted across all resource settings were eligible for inclusion, except those from China and Taiwan which have been reported in a companion publication. Phenomena of interest were opinions, views and perspectives of women regarding preferences for mode of birth, attributes of CS, societal and cultural beliefs about modes of birth, and right to choose mode of birth. Thematic synthesis of data was conducted. Confidence in findings was assessed using GRADE-CERQual. RESULTS: We included 52 studies, from 28 countries, encompassing the views and perspectives of pregnant women, non-pregnant women, women with previous CS, postpartum women, and women's partners. Most of the studies were conducted in high-income countries and published between 2011 and 2021. Factors underlying women preferences for CS had to do mainly with strong fear of pain and injuries to the mother and child during labour or birth (High confidence), uncertainty regarding vaginal birth (High confidence), and positive views or perceived advantages of CS (High confidence). Women who preferred CS expressed resoluteness about it, but there were also many women who had a clear preference for vaginal birth and those who even developed strategies to keep their birth plans in environments that were not supportive of vaginal births (High confidence). The findings also identified that social, cultural and personal factors as well as attributes related to health systems impact on the reasons underlying women preferences for various modes of birth (High confidence). CONCLUSIONS: A wide variety of factors underlie women's preferences for CS in the absence of medical indications. Major factors contributing to perceptions of CS as preferable include fear of pain, uncertainty with vaginal birth and positive views on CS. Interventions need to address these factors to reduce unnecessary CS.

Preference for caesarean attitudes toward birth in a Chilean sample of young adults.

BACKGROUND: Little empirical research exists about what motivates birth mode preferences, and even less about this topic in Latin America, where obstetric interventions and caesareans are some of the highest worldwide. AIM: To identify factors associated with caesarean preference among Chilean men and women who plan to have children and to inform childbirth education and informed consent procedures. METHODS: An online cross-sectional survey measuring attitudes toward birth was administered to graduate students at a large public university in Chile. Eligible students were under the age of 40 and had no children but intended to have children. Logistic regression modelling was used to determine which sociodemographic factors, knowledge and beliefs were associated with caesarean preference. FINDINGS: Among eligible students, 730 responded and 664 provided complete answers to the variables of interest. Respondents had a mean age of 28.8; 38% were male and 62% female. Positive attitude toward technological intervention (Odds Ratio 7.4, 95% Confidence Interval 3.9-14.0), high risk perception of vaginal birth (Odds Ratio 1.8, 95% Confidence Interval 1.1-2.8), family history of caesarean (Odds Ratio 1.9, 95% Confidence Interval 1.0-3.8) and high fear of birth (Odds Ratio 3.7, 95% Confidence Interval 2.0-6.8) were associated with caesarean preference. DISCUSSION: Preference for caesarean birth was highly associated with positive attitudes toward technological intervention and may be related to a lack of knowledge about the realities of caesarean and vaginal birth. CONCLUSIONS: Patient-centered education on the relative benefits and risks of birth modes has the potential to influence preferences toward vaginal birth.

Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil.

We examined people's preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting "choosing who makes decisions about your care" as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil / Preferência por morrer em casa e fatores associados de pessoas idosas da cidade de Belo Horizonte, Brasil

Abstract We examined people's preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting "choosing who makes decisions about your care" as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Resumo Examinamos as preferências das pessoas para o local da morte e identificamos os fatores associados com a preferência pela morte em casa. Perguntamos para uma amostra representativa (N = 400) de pessoas idosas (≥ 60 anos) residentes da cidade de Belo Horizonte, sobre suas preferências pelo local da morte numa situação de doença grave, com menos de um ano de vida. Os dados foram analisados utilizando regressão binomial para identificar os fatores associados. Indicaram a casa como o local preferido de morte, 52,2%. Cinco variáveis foram associadas à preferência por morte em casa: aqueles que vivem com 1 criança (odds ratio(OR)0,41; intervalo de confiança (CI)95%:0,18-0,92; ref: nenhuma criança); ter até 4 anos de escolaridade (OR0,42; CI95%:0,20-0,89; ref: ensino superior); ser difícil viver com o rendimento atual (OR3,18; CI95%:1,53-6,62; ref: vive confortavelmente); avaliar a sua saúde geral como razoável (OR2,07; CI95%:1,06-4,03; ref: saúde muito boa) e selecionar "escolher quem toma decisões sobre os cuidados" como a prioridade de cuidado mais importante (OR2,43; CI95%:1,34-4,40; ref: morrer no local que se quer). A maioria dos entrevistados expressaram preferência por morrer em casa. No entanto, a maioria dos residentes de Belo Horizonte morre nos hospitais, sugerindo que as preferências não estão sendo consideradas.

Evaluation of the Interrater Reliability of End-of-Life Medical Orders in the Physician Orders for Life-Sustaining Treatment Form.

Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied. Objective: To assess the interrater reliability of the medical orders documented in POLST forms. Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016. Main Outcomes and Measures: Interrater reliability as measured by κ statistics. Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The κ statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00). Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.

Physical activity levels and preferences of patients with breast cancer receiving chemotherapy in Chile.

PURPOSE: In Chilean patients with breast cancer (BC) receiving chemotherapy we aimed to (a) report the levels of physical activity (PA), (b) compare clinical/socio-demographic parameters among patients with different levels of PA, and (c) explore exercise preferences. METHODS: Patients (n = 112) completed a questionnaire regarding their PA habits, and another questionnaire regarding their preferences for an exercise program. Patients were then divided into three groups based on the exercise guidelines for patients with BC (150 min/week of moderate exercise, or 75 min/week of vigorous exercise). The groups were (i) not engaging in any moderate-to-vigorous PA (MVPA), (ii) engaging in some MVPA, but not meeting the guidelines, and (iii) meeting the guidelines. Clinical/socio-demographic parameters and preferences for exercise were compared between groups. RESULTS: Only 13% of patients with BC met the exercise guidelines. These patients were younger, had been diagnosed more recently, and had fewer children than patients not engaging in MVPA. There were no differences in the preferences for exercise between groups. Overall, patients preferred to exercise with other patients (76%), at moderate intensity (67%), performing different activities (94%), supervised (94%), with a fixed schedule (69%), and to do group activities (90%). CONCLUSION: Most patients with BC receiving chemotherapy did not meet the exercise guidelines. Patients > 50 years old and with > 2 children were the most inactive. Efforts to increase PA levels should focus especially on these patients. The preferences for exercise reported here will help to increase adherence to exercise programs and improve outcomes for these patients in Chile.

Expectativas de los pacientes respecto de la consulta con un médico de familia: estudio de corte transversal / Patient expectations regarding consultation with a family doctor: cross-sectional study

Antecedentes. El modelo biopsicosocial propone que la atención de la salud se centre en las necesidades de las personas.Sin embargo, no siempre los profesionales de la salud conocen adecuadamente lo que esperan de los encuentros clínicos sus pacientes. Objetivo. Explorar las expectativas respecto de sus encuentros clínicos de los/as pacientes atendidos por médicos de familia en un Centro de Salud de Atención Primaria del Conurbano Bonaerense (Buenos Aires, Argentina). Métodos. Estudio observacional descriptivo de corte transversal llevado a cabo sobre una muestra consecutiva de pacientes que acudieron a las consultas médicas de un centro de salud. Se les pidió a los pacientes que de un listado de diez potenciales expectativas, valoraran y priorizaran las más importantes para esa consulta. Resultados. Fueron entrevistadas 146 personas (91 % mujeres) con una mediana de edad de 30 años.Las expectativas más mencionadas (94 % de las personas encuestadas) fueron que el médico demuestre interés y escuche a sus pacientes, y que les brinde explicaciones sobre sus problemas y dudas. Conclusiones. Hemos podido documentar que las expectativas de nuestros pacientes respecto de sus entrevistas clínicas están muy vinculadas a su componente actitudinal (predisposición a escuchar con interés sus problemas) y al de las habilidades comunicacionales del profesional de la salud (explicaciones). (AU)

Background. The biopsychosocial model proposes that health care focus on the needs of people. However, health profes-sionals do not always know what their patients expect from clinical meetings. Objective. To explore the expectations regarding their clinical meetings of the patients attended by family doctors in aPrimary Health Care Center of Buenos Aires, Argentina. Methods. Descriptive cross-sectional observational study carried out on a consecutive sample of patients who attendedthe medical consultations of a health center. Patients were asked to rate and prioritize the most important ones for thatconsultation from a list of ten potential expectations. Results. 146 people (91 % women) with a median age of 30 years were interviewed.The most mentioned expectations (94 % of the people surveyed) were for the doctor to show interest and listen to theirpatients, and to give them explanations about their problems and doubts. Conclusions. We have been able to document that our patients' expectations regarding their clinical interviews are closelylinked to their attitudinal component (predisposition to listen with interest to their problems) and to the communication skillsof the healthcare professional (explanations). (AU)

Brief Intervention Among Mexican-Origin Young Adults in the Emergency Department at the USA-Mexico Border: Examining the Role of Patient's Preferred Language of Intervention in Predicting Drinking Outcomes.

AIMS: Determine if the language in which brief intervention (BI) is delivered influences drinking outcomes among Mexican-origin young adults in the emergency department when controlling for ethnic matching. SHORT SUMMARY: Aim of study was to determine if a patient's preferred language of intervention influences drinking outcomes among Mexican-origin young adults in the emergency department. Results indicate no significant differences in drinking outcomes among those who received BI in Spanish and BI in English. METHODS: This is a secondary data analysis on data from 310 patients randomized to receive a BI completed in Spanish (BI-S) or English (BI-E), with 3- and 12-month follow-up. Outcome measures of interest were drinking days per week, drinks per drinking day, maximum drinks in a day and negative consequences of drinking. RESULTS: There were no significant differences in drinking outcomes among those who received BI in Spanish and BI in English. CONCLUSIONS: Reduced drinking outcomes following BI among Mexican-origin young adults in the emergency department may not have been due to the language used to deliver intervention. Thus, our results provide evidence that language of intervention is not a crucial factor to achieve cultural congruence. In addition, our findings suggest that receiving the intervention is beneficial regardless of language, thus, facilitating real-world implementation.

Obstetrical providers' preferred mode of delivery and attitude towards non-medically indicated caesarean sections: a cross-sectional study.

OBJECTIVE: To describe obstetrical providers' delivery preferences and attitudes towards caesarean section without medical indication, including on maternal request, and to examine the association between provider characteristics and preferences/attitudes. DESIGN: Cross-sectional study. SETTING: Two public and two private hospitals in Argentina. POPULATION: Obstetrician-gynaecologists and midwives who provide prenatal care and/or labour/delivery services. METHODS: Providers in hospitals with at least 1000 births per year completed a self-administered, anonymous survey. MAIN OUTCOME MEASURES: Provider delivery preference for low-risk women, perception of women's preferred delivery method, support for a woman's right to choose her delivery method and willingness to perform caesarean section on maternal request. RESULTS: 168 providers participated (89.8% coverage rate). Providers (93.2%) preferred a vaginal delivery for their patients in the absence of a medical indication for caesarean section. Whereas 74.4% of providers supported their patient's right to choose a delivery method in the absence of a medical indication for caesarean section and 66.7% would perform a caesarean section upon maternal request, only 30.4% would consider a non-medically indicated caesarean section for their own personal delivery or that of their partner. In multivariate adjusted analysis, providers in the private sector [odds ratio (OR) 4.70, 95% CI 1.19-18.62] and obstetrician-gynaecologists (OR 4.37, 95% CI 1.58-12.09) were more willing than either providers working in the public/both settings or midwives to perform a caesarean section on maternal request. CONCLUSIONS: Despite the ethical debate surrounding non-medically indicated caesarean sections, we observe very high levels of support, especially by providers in the private sector and obstetrician-gynaecologists, as aligned with the high caesarean section rates in Argentina. TWEETABLE ABSTRACT: Non-medically indicated c-section? 74% of sampled Argentine OB providers support women's right to choose.

Patient's perspective of sustained remission in rheumatoid arthritis.

BACKGROUND: During the course of rheumatoid arthritis (RA), patients have profound negative effects on their patient-reported-outcomes (PRO); in addition, the impact of sustained remission (SR) on PROs may differ for each particular outcome. The objectives of this study were to identify SR from an inception cohort of RA patients and to examine the impact of SR in an ample spectrum of PROs. METHODS: The study was developed in a well characterized and ongoing cohort of RA patients with recent onset disease recruited from 2004 onwards. In November 2016, the cohort included 187 patients, of whom 145 had at least 30 months of follow-up, with complete rheumatic assessments at regular intervals in addition to a pain visual analogue scale (PVAS), overall disease-VAS (OVAS), health assessment questionnaire (HAQ), Short-Form 36v2 Survey (SF-36) and fatigue assessment. First SR was defined according to the DAS28 cut-offs (DAS28-SR) and ACR/EULAR 2011 Boolean definition (B-SR), if maintained for at least 12 consecutive months. The dependent t test and Mc Nemar's tests were used for comparisons between related groups. Local IRB approval was obtained. RESULTS: More patients achieved DAS28-SR than B-SR: 78 vs. 63, respectively. Fifty patients met both SR definitions. Follow-up to DAS28-SR was shorter than to B-SR and the duration of DAS28-SR was longer, p ≤ 0.023 for all comparisons. At SR, patients had PRO proxy to normal values; the percentage of patients with normal PRO varied from 97% (95% CI: 91-99) for HAQ to 50% (95% CI: 39-61) for absence of fatigue. In DAS28-SR patients, acute reactant phases within the normal range were detected very early (after 1.5-2.9 months). HAQ, PVAS, OVAS and SF-36 were scored within the normal range after 6-7 months. The absence of fatigue was detected at 8.7 months of follow-up, which was similar to DAS28-SR. In the 63 patients with B-SR, a similar pattern was observed. The follow-up to outcomes of the 50 patients who met both SR definitions was similar, but the absence of fatigue and physical component SF-36 normalization were achieved earlier in B-SR patients (p ≤ 0.02). CONCLUSIONS: The impact of SR on PRO differs accordingly to each particular outcome.

La perspectiva del paciente del ensayo clínico / The clinical trial patient's perspective

Introducción: El reclutamiento de pacientes en ensayos clínicos es lento. Se desconoce la perspectiva de estos pacientes y las barreras que perciben para participar en estos estudios. Objetivo: Identificar la percepción de los sujetos de investigación sobre la participación en ensayos clínicos. Métodos: Estudio descriptivo transversal, realizado desde septiembre/2014 hasta septiembre/2015. Se emplearon técnicas cualitativas y cuantitativas. Se trabajó con sujetos sanos y pacientes participantes en ensayos clínicos. Se exploraran ventajas y barreras percibidas en relación con su participación e intereses. Resultados: Le confirieron importancia social al ensayo clínico. El 96,7 por ciento señaló como ventaja la oportunidad de acceder a un tratamiento. Las barreras más importantes fueron el desconocer su estado de salud (65 por ciento) y no entender lo explicado (60,8 por ciento). Al 92,5 por ciento le gustaría le informaran los resultados y el 87,5 por ciento consideró que esta sería una manera de agradecerle su participación. Conclusiones: Los sujetos sanos poseen un conocimiento básico sobre ensayos clínicos, pero insisten en la necesidad de educación y comunicación a la población. Le confieren importancia social y muestran disposición a participar aunque reconocen cierto temor y asumen una responsabilidad. Los pacientes que participan en un ensayo clínico lo consideran ventajoso pues reciben un tratamiento que puede mejorar su salud, y tienen prioridad para realizarse pruebas diagnósticas. No entienden lo que se le propone y la dificultad para acceder al sitio de investigación es señalada como posible barrera. Así mismo, los pacientes muestran un marcado interés en conocer el resultado de la investigación(AU)

Introduction: Recruitment of patients in clinical trials is slow. The perspective of these patients and the barriers that they perceive to participate in these studies are unknown. Objective: To identify the perception of research subjects about participation in clinical trials. Methods: Descriptive cross-sectional study carried out from September 2014 to September 2015. Qualitative and quantitative techniques were used. Healthy subjects and participant patients in clinical trials were involved. Advantages and perceived barriers were analyzed in terms of their participation and interests. Results: The participants attached some social importance to the clinical trial. In the group, 96.7 percent pointed out that the opportunity to have access to a treatment was an advantage. The most important barriers were ignoring their health status (65 percent) and not understanding the explanations provided (60.8 percent). On the other hand, 92.5 percen would like to be informed about the results and 87.5 percent felt that the aforementioned would be a way of thanking them for their participation. Conclusions: Healthy subjects have a basic knowledge of clinical trials, but they insist on the need for education of and communication with the population. They attach social importance to the participation in clinical trials and are willing to do so, although they admit feeling some fear and assuming this type of responsibility. The patients participating in a clinical trial consider it advantageous because they receive treatment that may improve their health, and are prioritized in performance of diagnostic tests. Lack of understanding about the proposals of the trials and difficulties in acceding to the research website are identified as possible barriers. The patients are also very interested in knowing the results of the research study(AU)

Examining patients' preferences for participation in clinical decision-making: the experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population.

BACKGROUND AND AIMS: It is generally accepted that patients prefer to be told the truth by their physicians; however, the practice of partial truth-telling is frequent with an existing 'norm of nondisclosure.' Our primary objective was to determine what patients wanted to be told about their illness, and whether there might be differences between patients with either cancer or advanced chronic obstructive pulmonary disease (COPD). A second objective was to determine how these patients envisioned their participation, or lack thereof, in the treatment decision-making process. METHODS: Subjects were eligible for this prospective study if they were attending the oncology or pulmonary outpatient consultation services at the British Hospital or the Sanatorio Güemes Private Hospital in Buenos Aires, Argentina between June 2009 and May 2010. RESULTS: Ninety-nine patients were recruited. Forty-four had a diagnosis of COPD, and 55 patients had cancer. Seventeen of the patients expected their health to improve in the future, but a significantly higher proportion of patients with malignant disorders expected to get better in the near future as compared with those with COPD (98.2% vs 62.8%, P < 0.001). Most study participants expressed a desire to receive all the information available about their condition. A majority of the participants expressed a preference for making treatment decisions in collaboration with their physician (40.4%) CONCLUSIONS: While they considered the role of their families relevant and wanted information to be shared so that family members might participate in decision-making, they did not want their families to have a right to withhold information, make final decisions.

Treatment expectations among adolescents with chronic musculoskeletal pain and their parents before an initial pain clinic evaluation.

OBJECTIVES: To understand expectations regarding treatment recommendations among treatment-seeking adolescents with chronic musculoskeletal pain and their parents. METHODS: A total of 102 adolescent-parent dyads were recruited at the time of initial contact with a multidisciplinary pain management clinic. Each participant completed reports of adolescent pain intensity and disability, biopsychosocial perspective of pain, and treatment expectations related to recommendations and feedback for a vignette description of an adolescent presenting at an initial multidisciplinary pain clinic evaluation. RESULTS: Descriptive findings for individual treatment expectations and adolescent-parent dyad agreement statistics were examined. Slight to fair levels of agreement occurred for 50% of the expectations assessed. The strongest shared expectations were for recommendations to return to school, pursue psychological counseling, and pursue PT/OT treatment. Stronger agreement occurred for items reflecting alternative, emotional, behavioral, and activity recommendations with weaker agreement for medical interventions (eg, medication and surgery). Correlations emerged between individual expectations and adolescent pain intensity, disability, with the greatest number of significant relationships found for adolescent and parent expectations and biopsychosocial perspectives of pain. DISCUSSION: Our results document that adolescents and parents show modest levels of agreement on expectations for treatment at the time of an initial pain clinic evaluation. This may relate to expectations being internal perspectives not clearly expressed within families; thus, the initial treatment consultation may provide an important opportunity to create and align appropriate expectations. Implications of our findings are considered with respect to education, treatment, and future research to understand factors that contribute to treatment adherence and outcomes.