RESUMO
BACKGROUND: Long-term home non-invasive ventilation (LTH-NIV) has an impact on the health-related quality of life of patients with chronic hypercapnic respiratory failure (CRF) of different causes. There are generic and specific questionnaires for respiratory diseases. In 2003 a specific questionnaire was developed for patients with CRF in LTH-NIV, called the Severe Respiratory Insufficiency (SRI) questionnaire, which has been shown to be reproducible and reliable and has been validated in several languages. The aim of the study was to translate and culturally adapt the SRI questionnaire for adult Chilean patients under LTH-NIV, and to assess its psychometric properties. METHODS: The Chilean version of the SRI was obtained using the translation-back translation method, which was then applied by cross-sectional study to a non-probabilistic convenience sample of stable patients from five regions of Chile. The validated Chilean version of the SRI questionnaire and SF-36 (gold standard) questionnaire were applied, demographic and ventilatory data were collected. Reliability was analysed using Cronbach's alpha and intraclass correlation (test-retest). Construct validity was tested using exploratory factor analysis (principal component extraction and equimax orthogonal rotation) and hypothesis testing (Mann-Whitney test). Convergent criterion validity was tested using Spearman's rho. RESULTS: The sample comprised 248 patients, 132 women (53.2%), median age (IQR) was 62 years (51-75), 146 patients (58.9%) were 60 years or older, 40% had a low education level. The mean ± SD completion time of the questionnaire was 18.8 ± 9.1 min, and 100% of the items were answered. The questionnaire was self-applied by 46.8% of the sample. The validated Chilean version of the SRI questionnaire showed very good overall reliability (0.95) and by scales (> 0.7). It showed a good correlation with the SF-36, with equivalent scales, a rotated matrix with 8 factors and hypotheses that explain the underlying constructs. CONCLUSIONS: The validated Chilean version of the SRI questionnaire has good psychometric properties. It is feasible, valid, and reliable for application to evaluate patients with CRF in LTH-NIV. It was found to be sensitive to assess the characteristics of the local population.
Assuntos
Qualidade de Vida , Insuficiência Respiratória , Adulto , Chile , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Insuficiência Respiratória/terapia , Inquéritos e Questionários , TraduçõesRESUMO
BACKGROUND: Home mechanical ventilation (HMV) is a viable and effective strategy for patients with chronic respiratory failure (CRF). The Chilean Ministry of Health started a program for adults in 2008. METHODS: This study examined the following data from a prospective cohort of patients with CRF admitted to the national HMV program: characteristics, mode of admission, quality of life, time in the program and survival. RESULTS: A total of 1105 patients were included. The median age was 59 years (44-58). Women accounted for 58.1% of the sample. The average body mass index (BMI) was 34.9 (26-46) kg/m2. A total of 76.2% of patients started HMV in the stable chronic mode, while 23.8% initiated HMV in the acute mode. A total of 99 patients were transferred from the children's program. There were 1047 patients on non-invasive ventilation and 58 patients on invasive ventilation. The median baseline PaCO2 level was 58.2 (52-65) mmHg. The device usage time was 7.3 h/d (5.8-8.8), and the time in HMV was 21.6 (12.2-49.5) months. The diagnoses were COPD (35%), obesity hypoventilation syndrome (OHS; 23.9%), neuromuscular disease (NMD; 16.3%), non-cystic fibrosis bronchiectasis or tuberculosis (non-CF BC or TBC; 8.3%), scoliosis (5.9%) and amyotrophic lateral sclerosis (ALS; 5.24%). The baseline score on the Severe Respiratory Insufficiency questionnaire (SRI) was 47 (± 17.9) points and significantly improved over time. The lowest 1- and 3-year survival rates were observed in the ALS group, and the lowest 9-year survival rate was observed in the non-CF BC or TB and COPD groups. The best survival rates at 9 years were OHS, scoliosis and NMD. In 2017, there were 701 patients in the children's program and 722 in the adult´s program, with a prevalence of 10.4 per 100,000 inhabitants. CONCLUSION: The most common diagnoses were COPD and OHS. The best survival was observed in patients with OHS, scoliosis and NMD. The SRI score improved significantly in the follow-up of patients with HMV. The prevalence of HMV was 10.4 per 100,000 inhabitants. Trial registration This study was approved by and registered at the ethics committee of North Metropolitan Health Service of Santiago, Chile (N° 018/2021).