Brazilian breast cancer patient-reported outcomes: What really matters for these women.

Introduction: Patient-Reported Outcomes (PRO) are directly reported by the patient without interpretation of the patient's response by a clinician or anyone else and pertains to the patient's health, quality of life, or functional status associated with health care or treatment. It can provide patients' perspectives regarding treatment benefit and harm beyond survival and are often the outcomes of most importance to patients. This study aims to describe and analyze outcomes reported by Brazilian women diagnosed with breast cancer and rank the most important attributes for these patients. Methods: Observational descriptive study composed of exploratory interviews followed by online questionnaires applied to a convenience sample of women diagnosed with breast cancer. Results: Twelve women were interviewed to explore the main outcomes and preferences about their treatments, such as the most common side effects and the most impacted aspects of life after diagnosis and BC treatment. Psychological, emotional, and sexual impacts were frequently described as impacted aspects. Fifty-three women, from all the five Brazilian regions, answered the online questionnaire. Following an order of importance ranking, the following outcomes were chosen, respectively: overall survival, progression-free survival; and quality of life. The treatment effects that were considered less important, among this sample, were pain and adverse events. Conclusions: Thinking about expanding the therapeutic quality of users, it is essential to take into account the experiences of patients. PRO is a trend in current research to achieve this goal, in order to influence the decisions of HTA agencies about the importance of valuing outcomes that affect patients' lives.

Cambio y Psicoterapia: La perspectiva del niño / Change and Psychotherapy: The Child's Perspective

Resumen La investigación a partir de la perspectiva del paciente ha brindado información importante acerca de cómo la terapia es percibida, ayudando a los terapeutas a entender algunas reacciones desde los pacientes. Debido a las pocas investigaciones de este tipo en la población infantil, la terapia con niños no ha sido beneficiada por este movimiento. El presente trabajo es de carácter empírico con un enfoque de análisis cualitativo. En este estudio se exploraron las percepciones de los niños sobre distintos elementos del proceso psicoterapéutico. Para esto, se realizaron entrevistas semiestructuradas a 10 niños entre 6 y 12 años que se encontraban realizando tratamiento psicoterapéutico, o lo habían realizado en el último año. Durante las entrevistas se indagó sobre la "relación terapéutica", las "intervenciones del terapeuta", la "valoración de la terapia", las "nociones sobre la terapia", las "características de la terapia" y el "cambio percibido". Se analizaron las entrevistas bajo una metodología cualitativa consensual (CQR). Los resultados indican que los niños percibieron cambios vinculados a su propia conducta, emociones y relaciones interpersonales y pudieron relacionarlos con sus terapeutas y la alianza establecida con ellos.

Abstract Research from the patients' perspective has provided valuable information about how the psychotherapy process is perceived, helping therapists to understand some of the patient's reactions. Due to the limited research of this type in the children population, therapy with children has not benefited from this movement. The present study is an empirical work framed in a qualitative analysis approach, in which we inquired about children's perceptions about different elements related to the psychotherapeutic process. For this purpose, we conducted semi-structured interviews with 10 children between 6 and 12 years old, who were undergoing a psychotherapeutic treatment or had done it in the last year. During the interviews, we inquired about elements such as "therapeutic relationship," "therapist interventions," "therapy assessments," "notions about therapy," "therapy characteristics," and "perceived change." The interviews were analyzed using a consensual qualitative methodology (CQR). The results indicate that children were able to perceive changes concerning their behavior, emotions, and interpersonal relationships and could link these changes with their therapists and the therapeutic alliance established with them.

Las intervenciones terapéuticas desde la perspectiva del paciente: una aproximación cualitativa / Therapeutic interventions from patient´s perspective: a qualitative approach

Introducción: diferentes autores han presentado la necesidad de complementar investigaciones cuantitativas con otras de carácter cualitativo, que permitan profundizar sobre la experiencia subjetiva de los pacientes en sus tratamientos, y su relación con el cambio en psicoterapia. Objetivos y métodos: con un diseño observacional, exploratorio-descriptivo, y un enfoque cualitativo de análisis, se realizaron 73 entrevistas semi-estructuradas a pacientes de psicoterapia. Se indagó la perspectiva de los pacientes respecto de las intervenciones llevadas a cabo por sus terapeutas. Resultados y discusión: se generaron tres áreas temáticas: 1) la percepción del formato de tratamiento ofrecido por el terapeuta al comienzo de la psicoterapia, 2) las intervenciones del terapeuta percibidas como directivas vs aquellas percibidas como receptivas y 3) la valoración del contenido y la forma en que se realizaron las intervenciones. Se discuten las implicancias de estos resultados para la práctica clínica, la investigación y el entrenamiento de terapeutas.

Introduction: Numerous psychotherapy researchers addressed the need to complement quantitative research with qualitative approaches, in order to reach a deeper understanding of patients´ subjective experience of their treatment and its relationship with change in psychotherapy. Objectives and methods: 73 semi-structured interviews to subjects who had participated in a psychotherapeutic treatment terminated within 36 months prior to the date of interview were conducted. The aim of this observational and exploratory study was to inquire patients´ perspective of the interventions carried out by their therapists. A qualitative approach, based on Hill et al. CQR (1997) was conducted to analyze the interviews. Results and discussion: Three thematic areas emerged as a result of the analysis: 1) the perception of the overview of the treatment done by the therapist at the beginning of psychotherapy, 2) indicative vs. receptive perceived interventions, and 3) participants´ assessment of the content vs. the way in which interventions were made. Implications of these findings for clinical practice, research and training of therapists are discussed.

Continuing to Confront COPD International Patient Survey: methods, COPD prevalence, and disease burden in 2012-2013.

PURPOSE: The Continuing to Confront COPD International Patient Survey aimed to estimate the prevalence and burden of COPD globally and to update findings from the Confronting COPD International Survey conducted in 1999-2000. MATERIALS AND METHODS: Chronic obstructive pulmonary disease (COPD) patients in 12 countries worldwide were identified through systematic screening of population samples. Telephone and face-to-face interviews were conducted between November 2012 and May 2013 using a structured survey that incorporated validated patient-reported outcome instruments. Eligible patients were adults aged 40 years and older who were taking regular respiratory medications or suffered with chronic respiratory symptoms and reported either 1) a physician diagnosis of COPD/emphysema, 2) a physician diagnosis of chronic bronchitis, or 3) a symptom-based definition of chronic bronchitis. The burden of COPD was measured with the COPD Assessment Test (CAT) and the modified Medical Research Council (mMRC) Dyspnea Scale. RESULTS: Of 106,876 households with at least one person aged ≥40 years, 4,343 respondents fulfilled the case definition of COPD and completed the full survey. COPD prevalence ranged from 7% to 12%, with most countries falling within the range of 7%-9%. In all countries, prevalence increased with age, and in all countries except the US was greater among men (range 6%-14%) than among women (range 5%-11%). A significant disease burden was observed when considering COPD symptoms or health status, and showed wide variations across countries. Prevalence of moderate-to-severe dyspnea (mMRC scale ≥2) ranged from 27% to 61%, and mean CAT score ranged from 16.0 to 24.8, indicating medium-to-high impairment. CONCLUSION: This survey, representing 12 countries, showed similar rates of estimated COPD prevalence across countries that were higher than those reported a decade ago in the original Confronting COPD International Survey. A significant burden of COPD was demonstrated by symptoms and health care-resource use, similar to that reported in the original survey.