Health-related quality of life in post-infectious bronchiolitis obliterans: agreement between children and their proxy / Qualidade de vida relacionada à saúde na bronquiolite obliterante pós-infecciosa: concordância entre as crianças e seus cuidadores

Abstract Objective: To assess the level of agreement in health-related quality of life between children with Post-infectious Bronchiolitis Obliterans and their parent (so-called proxy). Methods: Participants aged between 8and 17 years who had been previously diagnosed with Post-infectious Bronchiolitis Obliterans were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for the study. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 was used for the assessment of health-related quality of life. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of health-related quality of life was determined by intra-class correlation coefficient and dependent t-tests. Results: The majority of participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the Pediatric Quality of Life Inventory 4.0 domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to have a significantly lower health-related quality of life score than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of four points in all other domains. Conclusion: Proxies of children and adolescents with Post-infectious Bronchiolitis Obliterans appear to consistently perceive their children as having lower health-related quality of life than how the patients perceive themselves.

Resumo: Objetivo: Avaliar o nível de concordância a respeito da qualidade de vida relacionada à saúde entre crianças com bronquiolite obliterante pós-infecciosa e seus pais (responsáveis). Métodos: Os participantes entre 8-17 anos, anteriormente diagnosticados com bronquiolite obliterante pós-infecciosa, foram acompanhados regularmente no ambulatório de pneumologia pediátrica. Os pais ou responsáveis legais (cuidadores) desses pacientes também foram convidados a participar do estudo. Uma versão validada e adequada para a idade do Inventário Pediátrico de Qualidade de Vida, versão 4.0, foi utilizada para a avaliação da qualidade de vida relacionada à saúde. Os cuidadores concluíram as versões do questionário correspondentes aos responsáveis. A correlação entre os autorrelatos e os relatos dos responsáveis da qualidade de vida relacionada à saúde foi determinada pelo coeficiente de correlação intraclasse e pelos testes t dependentes. Resultados: A maior parte dos participantes era do sexo masculino (79,4%) e a idade média foi 11,8 anos. As correlações intraclasse entre cada um dos domínios do Inventário Pediátrico de Qualidade de Vida e o escore total foram todas inferiores a 0,6, com intervalo entre 0,267 (baixo) e 0,530 (justo). Quando as médias de cada domínio e o escore total dos questionários foram comparados, observamos que os cuidadores apresentaram qualidade de vida relacionada à saúde significativamente menor em comparação com as crianças, com exceção do domínio social, no qual a diferença não foi significativa. Contudo, as diferenças no escore ultrapassaram o limite de diferença essencial de 4 pontos em todos os outros domínios. Conclusão: Os responsáveis pelas crianças e adolescentes com bronquiolite obliterante pós-infecciosa parecem perceber de forma consistente que suas crianças possuem qualidade de vida relacionada à saúde menor que os próprios pacientes.

Health-related quality of life in post-infectious bronchiolitis obliterans: agreement between children and their proxy.

OBJECTIVE: To assess the level of agreement in health-related quality of life between children with Post-infectious Bronchiolitis Obliterans and their parent (so-called proxy). METHODS: Participants aged between 8and 17 years who had been previously diagnosed with Post-infectious Bronchiolitis Obliterans were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for the study. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 was used for the assessment of health-related quality of life. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of health-related quality of life was determined by intra-class correlation coefficient and dependent t-tests. RESULTS: The majority of participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the Pediatric Quality of Life Inventory 4.0 domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to have a significantly lower health-related quality of life score than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of four points in all other domains. CONCLUSION: Proxies of children and adolescents with Post-infectious Bronchiolitis Obliterans appear to consistently perceive their children as having lower health-related quality of life than how the patients perceive themselves.

Juniper Subtle Energy Healing: A Case Study.

OBJECTIVES: This pilot case study sought to examine the efficacy of subtle energy treatments as conducted by Buddhist healing master Segyu Rinpoche at his Juniper Integrative Clinic in Northern California. DESIGN: Over the course of a year, this study followed two patients with terminal diagnoses, their treating physicians, and Segyu Rinpoche as the patients underwent treatment at the Juniper Clinic. The patients entering the study had exhausted all known medical options. One patient suffered from chronic lymphocytic leukemia [CLL] and the other from bronchiolitis obliterans [BOS] brought about by graft versus host disease following a bone marrow transplant for leukemia. Their treating physicians are prominent members of two different teaching/research hospitals. This was an IRB approved study conducted in conformity with HIPAA standards. SETTING: The patients participated in treatments with Segyu Rinpoche twice a month at his clinic and engaged in daily meditation as instructed by Rinpoche. The study followed both patients through in-depth, face-to-face interviews, wellness surveys, weekly journal entries, and medical records. The study also followed the physicians and Segyu Rinpoche through face-to-face interviews. RESULTS: Both patients and physicians identified significant shifts in patient wellbeing, including less pain, greater happiness and more ease. In addition, both physicians and patients reported a reduced need for medication. Some aspects of the design were more or less successful in tracking patient experience (i.e., health and wellness survey vs. personal journals). The success of the pilot indicates that more qualitative case studies are needed. CONCLUSIONS: Patients and physicians identified a significant increase in overall patient wellbeing. Hence, on an anecdotal level, the study demonstrated the usefulness of subtle energy healing as practiced by Segyu Rinpoche and the Juniper Clinic. The success of the pilot indicates the potential value of full qualitative studies for this modality.

Health-related quality of life in patients with bronchiolitis obliterans / Qualidade de vida relacionada à saúde em pacientes com bronquiolite obliterante

Abstract Objective: To evaluate the overall health-related quality of life in patients with bronchiolitis obliterans. Methods: Participants with a diagnosis of post-infectious bronchiolitis obliterans, who were being followed-up at two specialized outpatient clinics of Pediatric Pulmonology in Porto Alegre, Brazil, and controls aged between 8 and 17 years, of both genders, were included in the study. Controls were paired by gender, age, and socioeconomic level in relation to the group of participants with post-infectious bronchiolitis obliterans. The version of the Pediatric Quality of Life Inventory (PedsQ) tool validated for Brazil was applied for the assessment of Health-related Quality of Life, through an interview. The comparison of the Health-related Quality of Life means between the groups was performed using Student's t-test for independent samples and the chi-squared test, for categorical variables. Results: 34 patients diagnosed with post-infectious bronchiolitis obliterans and 34 controls participated in the study. The mean age of the children included in the study was 11.2 ± 2.5 years, and 49 (72%) of them were males. The groups showed no significant differences in relation to these variables. The quality of life score was significantly and clinically lower in the post-infectious bronchiolitis obliterans group when compared with controls in the health (72.36 ± 15.6, 81.06 ± 16.4, p = 0.031) and school domains (62.34 ± 20.7, 72.94 ± 21.3, p = 0.043), as well as in the total score (69.53 ± 14.9, 78.02 ± 14.8, p = 0.024), respectively. Conclusion: Patients with post-infectious bronchiolitis obliterans presented lower health-related quality of life scores when compared with healthy individuals in the total score and in the health and school domains.

Resumo Objetivo: Avaliar a qualidade de vida relacionada à saúde geral em participantes com bronquiolite obliterante. Métodos: Foram incluídos no estudo participantes com diagnóstico de bronquiolite obliterante pós-infecciosa que estavam em acompanhamento em dois ambulatórios especializados de pneumologia pediátrica em Porto Alegre, Brasil e controles, entre 8 e 17 anos, de ambos os sexos. Os controles foram pareados por sexo, idade e nível socioeconômico em relação ao grupo de participantes com bronquiolite obliterante pós-infecciosa. Para avaliação da Qualidade de Vida Relacionada à Saúde geral foi aplicado a versão validada para o Brasil do instrumento PedsQL (Pediatric Quality of Life Inventory), por meio de entrevista. A comparação entre as médias da Qualidade de Vida Relacionada à Saúde entre os grupos foi realizada mediante o teste t para amostras independentes e para as variáveis categóricas por teste qui-quadrado. Resultados: Participaram do estudo 34 pacientes com diagnóstico de bronquiolite obliterante pós-infecciosa e 34 controles. A média da idade das crianças incluídas foi de 11,2 ± 2,5 anos e 49 (72%) deles eram do sexo masculino. Os grupos não apresentaram diferenças significativas em relação a essas variáveis. O escore de qualidade de vida foi significativamente e clinicamente menor no grupo bronquiolite obliterante pós-infecciosa em comparação com o controle nos domínios saúde: (72,36 ± 15,6; 81,06 ± 16,4; p = 0,031); escolar: (62,34 ± 20,7; 72,94 ± 21,3; p = 0,043) e no escore total (69,53 ± 14,9; 78,02 ± 14,8, p = 0,024), respectivamente. Conclusão: Os pacientes com bronquiolite obliterante pós-infecciosa apresentam escores de qualidade de vida relacionados à saúde menor do que indivíduos saudáveis no escore total e nos domínios saúde e escolares.

Health-related quality of life in patients with bronchiolitis obliterans.

OBJECTIVE: To evaluate the overall health-related quality of life in patients with bronchiolitis obliterans. METHODS: Participants with a diagnosis of post-infectious bronchiolitis obliterans, who were being followed-up at two specialized outpatient clinics of Pediatric Pulmonology in Porto Alegre, Brazil, and controls aged between 8 and 17 years, of both genders, were included in the study. Controls were paired by gender, age, and socioeconomic level in relation to the group of participants with post-infectious bronchiolitis obliterans. The version of the Pediatric Quality of Life Inventory (PedsQ) tool validated for Brazil was applied for the assessment of Health-related Quality of Life, through an interview. The comparison of the Health-related Quality of Life means between the groups was performed using Student's t-test for independent samples and the chi-squared test, for categorical variables. RESULTS: 34 patients diagnosed with post-infectious bronchiolitis obliterans and 34 controls participated in the study. The mean age of the children included in the study was 11.2±2.5 years, and 49 (72%) of them were males. The groups showed no significant differences in relation to these variables. The quality of life score was significantly and clinically lower in the post-infectious bronchiolitis obliterans group when compared with controls in the health (72.36±15.6, 81.06±16.4, p=0.031) and school domains (62.34±20.7, 72.94±21.3, p=0.043), as well as in the total score (69.53±14.9, 78.02±14.8, p=0.024), respectively. CONCLUSION: Patients with post-infectious bronchiolitis obliterans presented lower health-related quality of life scores when compared with healthy individuals in the total score and in the health and school domains.

Psychiatric Predictors of Long-term Transplant-Related Outcomes in Lung Transplant Recipients.

BACKGROUND: Long-term survival after lung transplantation remains poor, yet modifiable risk factors for late-term morbidity and mortality have yet to be identified. Because psychiatric disorders increase risk for poor health outcomes in many nontransplant chronic disease populations, lung recipients with depression or anxiety before or early after transplantation may be at heightened risk for late-term transplant-related morbidity and mortality. METHODS: Among 178 patients from a prospective study of mental health after lung transplantation, we identified 1-year survivors and examined whether they experienced major depression or anxiety disorders during that year as well as before transplantation. We used multivariable Cox regression to examine the relationship between these disorders and risk for subsequent bronchiolitis obliterans syndrome (BOS), mortality and graft loss for up to 15 years posttransplant, controlling for other known risk factors for the outcomes. RESULTS: One hundred fifty-five recipients were studied. Recipients with posttransplant depression had an elevated risk of BOS (hazard ratio [HR], 1.91; 95% confidence interval [95% CI], 1.10-3.31), patient death (HR, 1.65; 95% CI, 1.01-2.71) and graft loss (HR, 1.75; 95% CI, 1.06-2.88). A trend toward reduced risk of BOS was observed in recipients with posttransplant anxiety (HR, 0.61; 95%CI, 0.37-1.00). Neither pretransplant disorder was related to risk for any outcome. CONCLUSIONS: Early posttransplant depression increases risk for long-term transplant-related morbidity and mortality. Screening to identify depression should therefore be routine in posttransplant care. Although anxiety was not significantly associated with poor outcomes, screening for posttransplant anxiety should also be routine, to reduce patient distress. Research is needed to better understand mechanisms underlying depression-outcome associations.

Chronic suppurative lung disease in a developing country: impact on child and parent.

OBJECTIVES: To investigate the impact of chronic suppurative lung disease (CSLD) on growth and lung function in the child as well as quality of life of the child and parent. METHODS: Cross-sectional study in 60 children with CSLD, bronchiectasis (including cystic fibrosis) and bronchiolitis obliterans. Thirty-five parents were interviewed while the remaining patients' data were collated from medical notes. Anthropometric measurements at first diagnosis and at interview were compared. The most recent lung function was also collected. The Parent Cough-Specific Quality of Life (PC-QOL) and the Depression, Anxiety and Stress (DASS21) questionnaires were administered to parents. RESULTS: The median (range) age at diagnosis was 1.3 (0.2-11) years. The median (IQR) duration between anthropometric measurements was 35 (15, 59) months. Children with cystic fibrosis (CF) had improvements both in weight and BMI, whereas children with non-CF CSLD had no improvements in any growth parameter. Seventy-eight percent of children who performed spirometry had values <80% of normal predicted value. PC-QOL scores were low. Frequent exacerbations (more than twice in the past 6 months) and cough (more than 2 days/week) were not associated with significantly lower PC-QOL scores. Seventy-seven percent of interviewed parents had abnormal DASS21 scores with 54% being stressed and 51% being depressed. Mental health was better in parents of children with CF. CONCLUSION: CSLD had a negative impact on growth, lung function, and quality of life. Children with CF had a better outcome in growth as well as better parental mental health compared to children with other etiologies. Pediatr Pulmonol. 2014; 49:435-440. © 2013 Wiley Periodicals, Inc.

Función pulmonar y calidad de vida en niños y adolescentes con bronquiolitis obliterante por adenovirus / Pulmonary function and quality of life in children and adolescents with bronchiolitis obliterans post-adenoviral infection

Introduction: Adenovirus infection is an important cause of pneumonia in Chilean children. Postinfectious Bronchiolitis Obliterans (PIBO) is the most important complication. There are few studies assessing pulmonary function and quality of life in PIBO patients. Objective: The aim of this study is to assess the pulmonary function and the quality of life of patients with PIBO and the correlation between both variables. Methods: 14 children with PIBO in follow up at the pediatric pulmonology outpatient clinic of a public children hospital were included in this study. Study period: April 2009 - April 2010. Pulmonary function was assessed in a medical visit by spirometry, flow/volume curve and intrathoracic gas volume measurement. The following indices were analyzed FVC, FEV1, FEV25-75, FEV1/FVC, RV, TLC, RV and RV/TLC. A survey of a self-administered Quality of Life (PedsQL, version 4.0, Spanish for Chile) was applied at the visit to investigate their global, physical and psychosocial quality of life. The Pearson linear correlation between quality of life and the pulmonary function test parameters was assessed, in the statistical analysis ap value < 0.05 was considered significant. Results: The mean age of our patients was 12.4 (range: 9-19 years-old). The functional alterations were characteristics of an obstructive respiratory disorder in 64.3 percent of the patients. Average pulmonary function test indices showed decreases in FEV1 (75 percent), FEV25-75 (48.8 percent), FEV1/FVC (67.6 percent) with normal value of FVC (93,7 percent) as well as pronounced increases in RV (333.5 percent), TLC (156 percent) and RV/TLC (51.8 percent). Mean change of FEV1 and FEV25-75post-bronchodilator was 11.3 percent and 26.4 percent respectively. Only 14.3 percent of our patients showed normal pulmonary function. The quality of life parameters were in average 58.2 percent of overall quality of life, 58.6 percent of physical quality of life and 57.9 percent of psychosocial ...

Introducción: La infección por adenovirus es una causa importante de neumonía en niños chilenos. La bronquiolitis obliterante (BOPI) es la complicación más importante. Existen pocos estudios donde evalúen la función pulmonar y la calidad de vida de los pacientes con BOPI. Objetivo: Evaluar la función pulmonar y la calidad de vida de los pacientes con BOPI y la correlación entre ambas variables. Métodos: Se incluyeron 14 niños con BOPI en el policlínico de la unidad de broncopulmonar de un hospital público de niños. Período de estudio: abril de 2009-abril de 2010. La función pulmonar se evaluó en una visita médica por espirometría, curva flujo / volumen y la determinación de volumen de gas intratorácico. Los índices analizados fueron los siguientes CVF, VEF1, FEV25-75, VEF1/CVF, VR,CPT, VR y VR / CPT. En la misma visita se realizó una encuesta auto-administrada de Calidad de Vida (PedsQL, versión 4.0, español de Chile) para investigar la calidad de vida global, física y psi-cosocial. Se aplicó la correlación lineal de Pearson entre calidad de vida y los parámetros de función pulmonar. Se consideró estadísticamente significativo unp <0,05. Resultados: La edad media de nuestros pacientes fue de 12,4 (rango: 9-19 años). La alteración funcional característica fue la obstructiva en el 64,3 por ciento de los pacientes. El promedio de los índices de pruebas de función pulmonar mostraron una disminución en VEF1 (75 por ciento), FEV25-75 (48,8 por ciento), VEF1/CVF (67,6 por ciento) con un valor normal de la CVF (93,7 por ciento), así como aumentos pronunciados en VR (333,5 por ciento), CPT (156 por ciento) y VR/CPT (51,8 por ciento). La media del cambio del VEF1 y FEV25-75post-broncodilatador fue 11,3 por ciento y 26,4 por ciento respectivamente. Sólo el 14,3 por ciento mostró una función pulmonar normal. Los parámetros de calidad de vida fueron en promedio 58,2 por ciento de calidad de vida general, 58,6 por ciento de calidad de vida física y el 57,9 por ciento...

Distress and alexithymia in lung recipients - psychosocial strains and associations with chronic allograft dysfunction.

QUESTIONS UNDER STUDY: In recent years, distress and alexithymia have been recognised as psychosocial factors related to both somatic and psychosomatic diseases. In this study distress and alexithymia and their associations with physical parameters were investigated in lung recipients. METHODS: The study, which included 76 patients after a lung transplant, measured psychological distress (Symptom Checklist, SCL-K-9) and alexithymia (Toronto Alexithymia Scale, TAS-20). Physical health was assessed by means of lung function (FEV1), exhaled nitric oxide (eNO), and comorbidity (CCI) at the time of the questionnaire survey. A bronchiolitis obliterans syndrome (BOS) was assessed at the time of the questionnaire survey and one year later. RESULTS: Mean values of distress were found to be significantly higher in lung recipients than in a normal community sample, and mean values of alexithymia were significantly higher in lung patients than in healthy persons. There is a significant positive correlation between distress and BOS at the time of the questionnaire survey (p = .008). Distress is a predictor for new-onset BOS one year after the questionnaire survey (p = .026). No significant correlations were found between alexithymia and physical parameters. CONCLUSIONS: Lung transplants go hand-in-hand with increased alexithymia and psychological distress. In addition, psychological distress may contribute to the development of BOS. This association underlines the importance of psychosocial support after lung transplantation.

Quality of life and bronchiolitis obliterans syndrome in patients after lung transplantation.

BACKGROUND: Lung transplantation has become an established and effective treatment for patients with end-stage pulmonary disease. OBJECTIVE: To investigate health-related quality of life in correlation with occurrence and degree of bronchiolitis obliterans syndrome after transplantation. METHODS: In a cross-sectional study design, 119 consecutive lung transplant recipients (63.9% bilateral and 36.1% single lung transplants) responded voluntarily to a set of standardized questionnaires (12-Item Short-Form Health Survey, Center for Epidemiologic Studies-Depression Scale, Coping With Everyday Life, Beck Anxiety Inventory, Zerssen list of complaints) that covered health-related quality of life and psychological well being. Also, we performed pulmonary function studies to clinically grade bronchiolitis obliterans syndrome in all patients. RESULTS: In this cohort, 41.2% of patients developed bronchiolitis obliterans syndrome at a mean interval of 5.6 years after lung transplantation. Actuarial freedom from bronchiolitis obliterans syndrome was 90.1% +/- 2.3% at 1 year, 79.9% +/- 3.7% at 3 years, and 59.5% +/- 4.8% at 5 years after lung transplantation. Recipients with bronchiolitis obliterans syndrome reported significantly lower well being and quality of life than those without bronchiolitis obliterans syndrome, who scored similar to healthy volunteers. In a subanalysis, body functioning (P < .001) and related areas of coping (P < .001) were mostly affected by bronchiolitis obliterans syndrome. CONCLUSIONS: Quality of life was negatively affected by the onset of bronchiolitis obliterans syndrome. However, even patients who develop bronchiolitis obliterans syndrome reported a temporary benefit from lung transplantation. In addition to optimal medical care and efforts in preventing bronchiolitis obliterans syndrome, psychological support of lung recipients seems to be essential, especially when bronchiolitis obliterans syndrome occurs.