Objective: To evaluate the effects that pulmonary resection has on pulmonary function and quality of life (QoL) in patients with primary or metastatic lung cancer. Methods: This was a prospective cohort study involving all patients submitted to pulmonary resection for cancer between September of 2006 and March of 2007 at the A. C. Camargo Hospital in São Paulo, Brazil. Patients underwent spirometry in the preoperative period and at six months after the surgical procedure. After a postoperative period of six months, the patients completed an overall QoL questionnaire (the Medical Outcomes Study 36-item Short-form Health Survey) and another one, specific for respiratory symptoms (the Saint George's Respiratory Questionnaire). The scores obtained in our study were compared with those previously obtained for a general population and for a population of patients with COPD. Results: We included 33 patients (14 males and 19 females), ranging in age from 39 to 79 years. All of the patients, smokers and nonsmokers alike, presented significant worsening of pulmonary function. The mean scores on the overall QoL questionnaire were approximately 5% lower than those obtained for the general population. The scores of various domains of the symptom-specific QoL questionnaire were 50-60% lower than those obtained for the general population and approximately 20% higher than those obtained for the population with COPD. Conclusions: Pulmonary resection has a direct negative impact on pulmonary function and QoL, especially on the QoL related to aspects directly linked to pulmonary function. We highlight the importance of preoperative assessment of pulmonary function in patients undergoing pulmonary resection, in order to predict their postoperative evolution.

Keywords: Thoracic surgery; Lung neoplasms/surgery; Spirometry; Quality of life; Questionnaires.

Objective: To evaluate the health-related quality of life of patients submitted to resection of the pulmonary parenchyma due to neoplasia. Methods: The Medical Outcomes Study 36-item Short-Form Health Survey was used to evaluate patients in the preoperative period and on postoperative days 30, 90 and 180. We used the GEE statistical model, in which the dependent variable (quality of life) changes for each patient over the course of the evaluation. Independent variables were gender, age, educational level, type of surgery, radiotherapy, chemotherapy, forced vital capacity and 6-minute walk test. The level of significance adopted was 5%. Results: The final study sample comprised 36 patients, 20 of whom were men. Of those 36 patients, 17 were submitted to lobectomy, 10 to pneumonectomy, 6 to segmentectomy, and 3 to bilobectomy. Chemotherapy was used in 15 patients, radiotherapy in 2, and a combination of radiotherapy and chemotherapy in 2. Improved quality of life was seen in the following domains: social (on postoperative day 90); physical/functional (some patients presenting better forced vital capacity and 6-minute walk test performance); and physical (in patients undergoing smaller resections). Lowered quality of life was seen in the following domains: social (for female patients); physical/social (resulting from radiotherapy, chemotherapy or both); and physical/functional (by postoperative day 30). Conclusions: It is important that studies evaluating the various determinants of quality of life, as well as the impact that cancer treatment modalities have on such variables, be conducted. The knowledge provided by such studies can contribute to improving the quality of life of patients undergoing pulmonary resection due to neoplasia.

Keywords: Lung neoplasms/surgery; Pneumonectomy; Quality of life; Questionnaires

Objective: To translate the European Organisation for Research and Treatment of Cancer (EORTC) 29-item Quality of Life Questionnaire-Lung Cancer Module (QLQ-LC29, developed for the assessment of quality of life in patients with lung cancer) to Portuguese, conducting a pilot study of the Portuguese-language version and adapting it for use in Brazil. Methods: For the translation, cultural adaptation, and pilot testing of the QLQ-LC29, we followed the guidelines established by the EORTC. The translation (English → Portuguese) and back-translation (Portuguese → English) were both carried out by translators, working independently, who were native speakers of one language and fluent in the other. After review, a draft version was created for pilot testing in lung cancer patients in Brazil. Results: A total of 15 patients diagnosed with lung cancer completed the Portuguese-language version of the questionnaire. At the end of the process, we conducted a structured interview to identify any patient difficulty in understanding any of the questions. The final versions were sent to the EORTC and were approved. Conclusions: The Portuguese-language version of the EORTC QLQ-LC29 appears to be a useful, important, reliable questionnaire that is a valid tool for assessing quality of life in patients with lung cancer in Brazil.

Keywords: Surveys and Questionnaires; Lung neoplasms; Quality of Life; Brazil; Translations.

Objective: To translate, adapt and validate the Patient Generated Index (PGI) for Brazilians with chronic obstructive pulmonary disease (COPD). Methods: 50 volunteers with COPD, mostly men (74%), with 73.1 ± 8.9 years of age, FEV1 of 52.3 ± 14.5% of predicted and FEV1 / FVC of 56.2 ± 8.6% of predicted responded to PGI, to the Saint George Respiratory Questionnaire (SGRQ) and to perform Glittre Activities of Daily Living test (Glittre ADL). After 1-2 weeks, PGI was again applied for the analysis of relative and absolute reliability. Results: The translation occurred without changes in the questionnaire. The score obtained in PGI had weak correlation with the SGRQ total score (r = -0.44, p <0.001) and with the impact domain (r = -0.40, p <0.05), presented a moderate correlation with the symptoms domain of the SGRQ (r = -0.55, p <0.001) and weak correlation with the activity domain (r = -0.31, p <0.05). A weak correlation was observed between PGI and Glittre ADL (r = -0.30; p <0.05). It was observed high reliability among the measures of PGI (ICCr = 0.94). Conclusion: This study shows that the Brazilian version of PGI is a reliable and valid instrument to measure health‑related quality of life (HRQL) in patients with COPD. It is a new and individualized form of evaluation of COPD patient-centered quality of life.

Keywords: Quality of life; Chronic obstructive pulmonary disease; Reproducibility of results and translations.

Objective: Barriers to physical activity can affect the functional capacity and quality of life of patients with pulmonary hypertension (PH). This study aimed to identify the main barriers to physical activity in patients with PH and to examine whether those barriers are related to functional capacity, echocardiographic variables, or quality of life. Methods: This was a cross-sectional observational study involving 70 patients. Participants scored seven potential barriers to their activities, with a score = 5 indicating a significant barrier. Participants completed the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) and Manchester Respiratory Activity of Daily Living questionnaire, as well as the six-minute walk test. Correlation analysis, univariate analysis and multiple logistic regression were performed. Results: As a perceived barrier to physical activity, 'lack of will' or 'lack of energy' was cited by 67% of the patients. The 'lack of will' barrier was found to correlate with all SF-36 domains except bodily pain. We also identified a correlation between the SF-36 vitality domain and the barriers 'lack of energy', 'lack of will' and 'lack of structure'. The logistic regression analysis indicated that the vitality domain correlated significantly with the barriers 'social influence', 'lack of energy', 'lack of will', and 'lack of structure'. For each unit decrease in the vitality score, there was a 10% increase in the probability of citing the barrier 'lack of will'. No significant correlations were identified between any of the perceived barriers and echocardiographic parameters. Conclusions: The perceived barrier most commonly reported was 'lack of will/energy', which correlated with almost all SF-36 domains, especially vitality. The 'lack of will' barrier also correlated with functional capacity.

Keywords: Pulmonary arterial hypertension; Exercise; Motivation; Quality of life; Surveys and questionnaires; Walk test.

Objective: To investigate the impact of a pulmonary rehabilitation program on the functional capacity and on the quality of life of patients on waiting lists for lung transplantation. Methods: Patients on lung transplant waiting lists were referred to a pulmonary rehabilitation program consisting of 36 sessions. Before and after the program, participating patients were evaluated with the six-minute walk test and the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36). The pulmonary rehabilitation program involved muscle strengthening exercises, aerobic training, clinical evaluation, psychiatric evaluation, nutritional counseling, social assistance, and educational lectures. Results: Of the 112 patients initially referred to the program, 58 completed it. The mean age of the participants was 46  14 years, and females accounted for 52%. Of those 58 patients, 37 (47%) had pulmonary fibrosis, 13 (22%) had pulmonary emphysema, and 18 (31%) had other types of advanced lung disease. The six-minute walk distance was significantly greater after the program than before (439 ± 114 m vs. 367 ± 136 m, p = 0.001), the mean increase being 72 m. There were significant point increases in the scores on the following SF-36 domains: physical functioning, up 22 (p = 0.001), role-physical, up 10 (p = 0.045); vitality, up 10 (p < 0.001); social functioning, up 15 (p = 0.001); and mental health, up 8 (p = 0.001). Conclusions: Pulmonary rehabilitation had a positive impact on exercise capacity and quality of life in patients on lung transplant waiting lists.

Keywords: Rehabilitation; Lung transplantation; Quality of life; Exercise; Exercise tolerance.

Background: Pulmonary rehabilitation is widely recommended for the treatment of chronic obstructive pulmonary disease. Objective: To evaluate the efficacy of pulmonary rehabilitation in improving exercise capacity, respiratory muscle strength and quality of life of chronic obstructive pulmonary disease patients. Method: This was an open, non-randomized clinical trial involving 27 clinically stable ex-smokers with chronic obstructive pulmonary disease who were enrolled in a pulmonary rehabilitation program. All were evaluated before and after pulmonary rehabilitation. Results: Mean age was 65 ± 5 years, mean body mass index was 25 ± 4 kg/m2, mean forced expiratory volume in one second was 55 ± 25% of predicted, mean ratio between forced expiratory volume in one second and forced vital capacity was 50 ± 12%, and mean arterial oxygen tension was 70 ± 7 mmHg. Comparison of pre- and post-pulmonary rehabilitation values revealed improvement in the distance walked in the 6-minute walk test (513 ± 99 m vs. 570 ± 104 m), maximum upper limb load (2 ± 1 kg vs. 3 ± 1 kg) and maximal inspiratory pressure (-89 ± 23 cmH2O vs. -102 ± 23 cmH2O), as well as in the activity domain, impact domain and total score on the Saint George's Respiratory Questionnaire. Conclusion: Pulmonary rehabilitation, when performed with care and with a focus on physical training, is efficacious in increasing not only the distance walked in the 6-minute walk test but maximum upper limb load, maximal inspiratory pressure and quality of life as well.

Keywords: Key words: Pulmonary rehabilitation. Chronic obstructive pulmonary disease. Quality of life. Respiratory muscles.

Objective: Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL) of lung cancer patients have on caregiver burden. Methods: This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36). Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV) plus non-impaired or impaired QoL (SF-36 total score > 50 vs. ≤ 50). Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. Results: We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Conclusions: Caregiver burden is more affected by patient QoL than by lung cancer stage.

Keywords: Lung neoplasms; Quality of life; Caregivers; Anxiety; Depression; Cost of illness.

Objective: The objective of this study was to evaluate the applicability of a modified version of the Saint George's Respiratory Questionnaire. The version evaluated elicits "agree" and "do not agree", rather than "yes" and "no", responses. The intention is to facilitate the comprehension of double-negative questions and to promote better recollection of symptoms by patients by shortening their symptom histories from 12 months to 3 months. Methods: A total of 30 clinically stable patients with chronic obstructive pulmonary disease were evaluated. The Saint George's Respiratory Questionnaire and the modified version of the same were administered 15 days apart. Results: All of the patients presented health-related alterations in their quality of life. Comparing mean scores between the two questionnaires, the greatest difference was seen in the Symptoms domain. No significant differences were found in any of the remaining domains or in the total scores. In a subsequent analysis, significant correlations between the two questionnaires were found in all domains: Symptoms (r = 0.71; p < 0.001); Activity (r = 0.75; p < 0.001); Impact (r = 0.73; p < 0.001) and Total (r = 0.86; p < 0.001). Conclusion: The modified version of the Saint George's Respiratory Questionnaire is as effective as the original in gauging quality of life. However, various symptoms recollection time frames should be investigated in order to determine which would be the best time frame to employ in the analysis.

Keywords: Pulmonary disease, chronic obstructive; Quality of life; Reproducibility of results; Cross-cultural comparison; Questionnaires

Pectus excavatum (PEX) is the most frequent congenital deformity of the anterior chest wall and is defined as the dislocation of the medial or inferior portion of the sternal region toward the spinal column. There are various ways to measure the deformity. In this study, we present an objective method of assessing such deformity, the anthropometric index for PEX (AI-PEX). The AI-PEX was developed in the Thoracic Surgery Department of the Heart Institute - University of São Paulo School of Medicine Hospital das Clínicas. The anthropometric measurements are taken during the physical examination. We herein report two cases involving patients with PEX assessed using the AI-PEX and treated with the minimally invasive Nuss technique. The measurements were always taken at the point of greatest deformity. The patients were assessed on the day of the operation and again at 60 days after the surgery. The AI-PEX allowed us to obtain a satisfactory assessment of the defect. In both patients, the post-operative evolution was favorable.

Keywords: Thoracic wall; Thoracic surgery, Video-assisted; Funnel chest.

Objective: To assess the quality of life of patients with lung cancer and to compare it with that of individuals without cancer. Methods: The Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) was administered to 57 patients diagnosed with lung cancer, treated at the Lung Cancer Outpatient Clinic of the Hospital São Paulo, and to a control group of 57 individuals recruited from the Extra Penha workout group. The Mann-Whitney test was used to compare the groups, domain by domain. The first model of logistic regression was adjusted for male gender, nonsurgical treatment, Karnofsky performance status and smoking, which were included as predictors. The second model was adjusted for each SF-36 domain in order to identify increases in the proportions of patients in stage IIIB or IV. Results: The lung cancer group and the control group presented the following mean scores, respectively, for the SF-36 domains: role limitations due to physical health problems, 29.39 ± 36.94 and 82.89 ± 28.80; role limitations due to emotional problems, 42.78 ± 44.78 and 86.55 ± 28.77; physical function, 56.49 ± 28.39 and 89.00 ± 13.80; vitality, 61.61 ± 23.82 and 79.12 ± 17.68; bodily pain, 62.72 ± 28.72 and 81.54 ± 19.07; general health, 62.51 ± 25.57 and 84.47 ± 13.47; emotional well-being, 68.28 ± 23.46 and 82.63 ± 17.44; and social functioning, 72.87 ± 29.20 and 91.67 ± 17.44. The logistic regression model showed that role limitations due to physical health problems, physical function and emotional well-being were predictors of stages IIIB and IV. Conclusions: The patients with lung cancer had a poorer quality of life, especially regarding physical aspects, than did the control subjects.

Keywords: Lung neoplasms; Quality of life; Health status.

Background: Pulmonary hypertension secondary to chronic thromboembolism is a severe and debilitating disease and has been associated with high mortality. Pulmonary thromboendarterectomy is the treatment of choice. Objective: To evaluate the impact of pulmonary thromboendarterectomy on the quality of life of patients with pulmonary hypertension secondary to chronic thromboembolism using the SF-36 Health Survey. Method: The SF-36 Health Survey questionnaire was administered to 13 patients prior to and at least 3 months following thromboendarterectomy. Results: Of the 13 patients studied, 7 were female and 6 were male. Mean age was 45.7 ± 18.3. All were submitted to thromboendarterectomy. After surgery, all SF-36 domains, with the exception of the "mental health" domain, improved. Conclusion: Pulmonary thromboendarterectomy provides significant improvement in patient quality of life.

Keywords: Key words: Hypertension pulmonary. Pulmonary embolism. Endarterectomy/methods. Quality of life.

Objective: To assess the quality of life (QoL) of patients with cystic fibrosis (CF) followed at a university referral center for CF. Methods: A cross-sectional study involving application of the Cystic Fibrosis Questionnaire (CFQ) and Shwachman score in CF patients between April of 2008 and June of 2009. Results: The sample consisted of 75 patients. The mean age was 12.5 ± 5.1 years (range, 6.1-26.4 years). The patients were divided into three groups by age in years: group I (< 12), II (12-14), and III (≥ 14). The highest and lowest CFQ scores were for the nutrition domain in group III (89.3 ± 16.2) and the social domain in group II (59.5 ± 22.3), respectively. Groups I and III differed significantly regarding the treatment domain (p = 0.001). Regarding Shwachman scores, there were significant differences between patients scoring ≤ 70 and those scoring > 70 in the social (group I; p = 0.045), respiratory (group II; p = 0.053), and digestive (p = 0.042) domains. In group III, severity did not correlate with QoL. In groups I and II, patients with an FEV1 < 80% of predicted did not differ from other patients for any CFQ domain. However, in group III, values for the following domains were significantly lower in patients with an FEV1 < 80%: physical (p = 0.012); body image (p = 0.031); respiratory (p = 0.023), emotional (p = 0.041); and social role (p = 0.024). Conclusions: It is important to assess QoL in CF patients, because it can improve treatment compliance.

Keywords: Cystic fibrosis; Quality of life; Questionnaires.

The present article purports to analyze aspects related to the concept of quality of life, taking into account the relevance of setting down parameters that allow for the evaluation of those aspects, especially in patients with chronic diseases. The analysis considered quality of life as one of the essential components of medical care, and pointed out the precautions that should be taken to choose instruments of evaluation, that should be sensitive and reliable to the dimensions they intend to evaluate.

Keywords: quality of life, chronic diseases, asthma, chronic obstructive pulmonary disease

Objective: To assess the 24-month effects of a pulmonary rehabilitation program (PRP) on anxiety, depression, quality of life and physical performance of COPD patients. Methods: Thirty patients with COPD (mean age, 60.8 ± 10 years; 70% males) participated in a 12-week PRP, which included 24 physical exercise sessions, 24 respiratory rehabilitation sessions, 12 psychotherapy sessions and 3 educational sessions. All patients were evaluated at baseline (pre-PRP), at the end of the treatment (post-PRP) and two years later (current) by means of four instruments: the Beck Anxiety Inventory; the Beck Depression Inventory; Saint George's Respiratory Questionnaire; and the six-minute walk test (6MWT). Results: The comparison between the pre-PRP and post-PRP values revealed a significant decrease in the levels of anxiety (pre-PRP: 10.7 ± 6.3; post-PRP: 5.5 ± 4.4; p = 0.0005) and depression (pre-PRP: 11.7 ± 6.8; post-PRP: 6.0 ± 5.8; p = 0.001), as well as significant improvements in the distance covered on the 6MWT (pre-PRP: 428.6 ± 75.0 m; post-PRP: 474.9 ± 86.3 m; p = 0.03) and the quality of life index (pre-PRP: 51.0 ± 15.9; post-PRP: 34.7 ± 15.1; p = 0.0001). There were no statistically significant differences between the post-PRP and current evaluation values. Conclusions: The benefits provided by the PRP in terms of the indices of anxiety, depression and quality of life, as well as the improved 6MWT performance, persisted throughout the 24-month study period.

Keywords: Pulmonary disease, chronic obstructive; Rehabilitation; Exercise; Quality of life; Anxiety; Depression.

Objective: Non-small cell lung carcinoma (NSCLC) is the most common type of lung cancer. Most patients are diagnosed at an advanced stage, palliative chemotherapy therefore being the only treatment option. This study was aimed at evaluating the health-related quality of life (HRQoL) of advanced-stage NSCLC patients receiving palliative chemotherapy with carboplatin and paclitaxel. Methods: This was a multiple case study of advanced-stage NSCLC outpatients receiving chemotherapy at a public hospital in Rio de Janeiro, Brazil. The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire was used in conjunction with its supplemental lung cancer-specific module in order to assess HRQoL. Results: Physical and cognitive functioning scale scores differed significantly among chemotherapy cycles, indicating improved and worsened HRQoL, respectively. The differences regarding the scores for pain, loss of appetite, chest pain, and arm/shoulder pain indicated improved HRQoL. Conclusions: Chemotherapy was found to improve certain aspects of HRQoL in patients with advanced-stage NSCLC.

Keywords: Carcinoma, non-small-cell lung; Quality of life; Palliative care; Carboplatin; Paclitaxel.

Objective: To evaluate quality of sleep and pulmonary function in clinically stable adolescents with sickle cell anemia (SCA). Methods: A cross-sectional descriptive study involving 50 patients with SCA submitted to nocturnal polysomnography and spirometry at the Brasília University Hospital. Anthropometric, polysomnographic and pulmonary function data were analyzed. Patients were divided into two groups according to oxygen saturation by pulse oximetry (SpO2) during rapid eye movement (REM) sleep: SpO2 ≤ 93%; and SpO2 > 93%. Descriptive statistics, Student's t-test, chi-square test and Pearson's correlation coefficient were used. Results: Mean age was 13.9 ± 2.5 years. Total sleep time and REM sleep percentage were lower, whereas REM sleep latency, the number of awakenings, movement during sleep, changes in sleep stage, sleep-disordered breathing index and obstructive apnea index were higher. Two patients (4%) did not present REM. There were statistically significant differences between the groups in most of the polysomnographic variables. The SpO2 in REM sleep presented a strong positive correlation with waking SpO2 and with SpO2 in non-REM sleep, whereas it presented a strong negative correlation with the percentage of total sleep time during which SPO2 was < 90%. Mean spirometric values were within normal ranges. Residual volume and the residual volume/total lung capacity/functional residual capacity ratio were elevated. Conclusion: Sleep impairment in clinically stable patients with SCA is probably due to hemoglobin desaturation and not to individual alterations in pulmonary function.

Keywords: Sleep disorders; Polysomnography; Adolescent; Anemia, sickle cell; Spirometry.

Background: There is currently no consensus regarding which factors influence the quality of life of patients suffering from chronic obstructive pulmonary disease (COPD). However, identifying such factors could orient approaches to improving the quality of the lives of these patients. Objective: To evaluate factors that can interfere with quality of life in COPD patients selected for pulmonary rehabilitation. Methods: Twenty-one patients with moderate to severe COPD were evaluated. Maximal inspiratory pressure (MIP), 6-minute walk test (6MWT), body mass index (BMI), pulmonary function, blood gases, grip strength (measured with a dynamometer), quadriceps strength and St. George's Respiratory Questionnaire (SGRQ) scores were assessed. Results: Statistically significant negative correlations with quality of life were found for the following factors: "impact" scores of: forced expiratory volume in one second (FEV1) (r = -0.68; p = 0.004), FEV1 to forced vital capacity ratio (FEV1/FVC) (r = -0.61; p = 0.014), peak expiratory flow (PEF) (r = -0.53 (p = 0.015), 6MWT (r = -0.63; p = 0.001) and BMI (r = -0.64; p = 0.002); "activity" scores for: MIP (r = -0.57; p = 0.007), baseline arterial oxygen saturation by pulse oximetry (SpO2) (r = -0.52; p = 0.018) and 6MWT (r = -0.58; p = 0.007); "symptom" score for: BMI (r = -0.60; p = 0.005); and "total" scores for: FEV1 (r = -0.64; p = 0.01), PEF (r = -0.47; p = 0.033) and BMI (r = -0.57; p = 0.009). Multiple linear regression revealed the primary factors influencing quality of life to be: BMI, which presented a significant influence on "symptom", "impact" and "total" scores (p = 0.002, p = 0.009 and p = 0.024, respectively); and 6MWT, which had a significant influence on "activity" and "impact" scores (p = 0.048 and p = 0.010, respectively). Conclusions: The BMI and 6MWT were shown to have an influence on quality of life in the COPD patients studied. Therefore, therapeutic approaches to improving the quality of life of COPD patients should take these indices into consideration.

Keywords: Lung diseases, obstructive/rehabilitation. Quality of life

Objective: To evaluate symptoms, lung function, and quality of life of a cohort of patients hospitalized for severe COVID-19 12 months after hospital admission. Methods: This was a cross-sectional study. We included severe COVID-19 survivors hospitalized in one of three tertiary referral hospitals for COVID-19 in the city of Belo Horizonte, Brazil. Participants were submitted to lung function and six-minute walk tests and completed the EQ-5D-3L questionnaire. Results: The whole sample comprised 189 COVID-19 survivors (mean age = 59.6 ± 13.4 years) who had been admitted to a ward only (n = 96; 50.8%) or to an ICU (n = 93; 49.2%). At 12 months of follow-up, 43% of patients presented with dyspnea, 27% of whom had a restrictive ventilatory disorder and 18% of whom presented with impaired DLCO. There were no significant differences in FVC, FEV1, and TLC between the survivors with or without dyspnea. However, those who still had dyspnea had significantly more impaired DLCO (14.9% vs. 22.4%; p < 0.020) and poorer quality of life. Conclusions: After one year, survivors of severe COVID-19 in a middle-income country still present with high symptom burden, restrictive ventilatory changes, and loss of quality of life. Ongoing follow-up is needed to characterize long COVID-19 and identify strategies to mitigate its consequences.

Primary ciliary dyskinesia (PCD) is a genetic disorder that is typically inherited in an autosomal recessive manner. It is clinically characterized by recurrent respiratory infections. However, its repercussions for patient quality of life should not be overlooked. Studies have shown that PCD has a significant impact on the lives of patients, although there are as yet no PCD-specific markers of quality of life. To address that problem, researchers in the United Kingdom developed a quality-of-life questionnaire for patients with PCD. The present communication focuses on the process of translating that questionnaire into Brazilian Portuguese, through a partnership between researchers in Brazil and those in the United Kingdom, as well as its subsequent application in patients in Brazil.

Keywords: Quality of life; Kartagener syndrome; Surveys and questionnaires.