The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol.

AIM: This study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers. DESIGN: This is an exploratory qualitative study. METHODS: Participants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1 year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21 years of age, assuming the role as primary caregivers of a pneumoconiosis patient will also be invited to join. In-depth interviews will be conducted in patients' home separately for patients and their caregivers and a home environment assessment will also be undertaken. The interview data will be transcribed verbatim, managed with the software NVivo 11 and analysed with content analysis. The ethical approval has obtained, and this study is supported by a research grant from the Pneumoconiosis Compensation Fund Board of Hong Kong on 14 August 2018. DISCUSSION: This study will advance the knowledge on how pneumoconiosis patients and their family caregivers manage the disease in the family context. The findings of this study can inform the development of a family-oriented care model to support the pneumoconiosis patients and their family caregivers to manage this condition better. IMPACT STATEMENT: Pneumoconiosis is the most common type of occupational lung disease in the Chinese population. These patients require long-term comprehensive services and support to assist their disease self-management. However, little is known about how these patients and their family caregivers manage the disease in the family context. The current study addresses this gap by exploring patients' illness experience and their family members' caregiving experience, which is timely to inform the design of family-oriented model of care to support this clinical cohort. CLINICAL TRIAL REGISTRATION: This study has been registered at ClinicalTrials.gov (NCT04022902).

Outcomes of community-based and home-based pulmonary rehabilitation for pneumoconiosis patients: a retrospective study.

BACKGROUND: Pneumoconiosis patients receive community-based or home-based pulmonary rehabilitation (PR) for symptom management and enhancement of physical and mental well-being. This study aimed to review the clinical benefits of community-based rehabilitation programmes (CBRP) and home-based rehabilitation programmes (HBRP) for PR of pneumoconiosis patients. METHODS: Archival data of pneumoconiosis patients who participated in CBRP and HBRP between 2008 and 2011 was analysed. There were 155 and 26 patients in the CBRP and HBRP respectively. The outcome measures used in the pre- and post-tests were Knowledge, Health Survey Short Form-12 (SF-12), Hospital Anxiety and Depression Scale (HADS), 6-Min Walk Test (6MWT), and Chronic Respiratory Questionnaire (CRQ). Paired t-tests and the Analysis of Covariance (ANCOVA) using the patients' baseline lung functions as the covariates were performed to examine the changes in the outcomes after completing the programmes. Hierarchical multiple regression analyses were used to examine the relationships between patient's programme participation factors and different scores of the outcome measures. RESULTS: After controlling for patients' baseline lung capacities, significant improvements were revealed among patients participated in CBRP in the scores of the 6MWT, Knowledge, HADS, SF-12 PCS, and CRQ emotion and mastery. The different scores in the Knowledge and HADS were correlated with the patients' levels of programme participation. In contrast, significant improvements were only found in the scores of the Knowledge and 6MWT among patients who participated in HBRP. The gain scores of the 6MWT were correlated with the patients' levels of programme participation. CONCLUSIONS: Both CBRP and HBRP benefited patients' levels of exercise tolerance and knowledge about the disease. CBRP provided greater benefits to patients' mental and psychosocial needs. In contrast, HBRP was found to improve patients' physical function, but did not have significant impacts on patients' mental health and health-related quality of life. The attendance of patients and the participation of their relatives in treatment sessions were important factors in enhancing the positive effects of CBRP and HBRP. These positive outcomes confirm the value of pulmonary rehabilitation programmes for community-dwelling pneumoconiosis patients.

[Relationship between quality of life and disability level in patients with occupational disease].

OBJECTIVE: To investigate the relationship between the quality of life (QOL) and disability level in patients with occupational disease and to investigate the influencing factors for QOL. METHODS: A total of 255 patients with occupational disease were selected from three specialized hospitals dedicated to occupational disease and the department of occupational medicine of one comprehensive hospital using cluster sampling from December 2013 to May 2014. A survey was carried out using WHOQOL-BREF and general questionnaire (including disability level), and statistical analysis was also performed using t test, F test, analysis of variance, and multivariate stepwise regression analysis. RESULTS: The QOL scores of patients with occupational diseases, from high to low, were social domain (11.48 ± 2.86), psychological domain (10.60 ± 2.28), physiological domain (10.54 ± 1.65), and environmental domain (10.50 ± 2.55), scores of which were significantly lower than the normal levels (P<0.05). QOL showed no significant differences between patients with occupational diseases of different disability levels (P>0.05). Also, QOL showed no significant differences between stage I, II and III patients with pneumoconiosis (P>0.05). The patients with pneumoconiosis were divided into mild, moderate, and severe groups, and the QOL scores of patients with mild pneumoconiosis in psychological and environmental domains were significantly higher than those of the patients with moderate or severe pneumoconiosis (P< 0.05). Patients with occupational poisoning was divided into mild, moderate and severe groups, and the three groups showed no significant differences in QOL score (P>0.05). Multivariate regression analysis showed that the QOL score of each domain was mainly influenced by the degree of lung injury, complications, course of disease, age of onset, income, and employment status. CONCLUSION: The QOL of patients with occupational disease is significantly reduced, and disability level cannot accurately reflect their QOL. The treatment of patients with occupational disease should focus on their complications, and at the same time QOL should also be improved.

[Life quality in individuals having occupational diseases caused by various occupational factors].

The article presents main results of studies concerning life quality in individuals having chronic occupational diseases of important social value. Life quality in patients with chronic mercurial intoxication and dust bronchitis appeared to result from personal, social and psychologic features.

Health-related quality of life in community-dwelling men with pneumoconiosis.

BACKGROUND: There have been few data on the health-related quality of life (HRQOL) in patients with pneumoconiosis. HRQOL is an important aspect of daily living in patients with industrial diseases. OBJECTIVES: To investigate the HRQOL and factors that contribute to the impairment of HRQOL in patients with pneumoconiosis. METHODS: 297 patients with pneumoconiosis were recruited from a community-based case registry. The HRQOL was measured with the St. George's Respiratory Questionnaire (SGRQ). Pulmonary function, comorbidity and psychosocial variables were also assessed. Patients' mood state was evaluated with the Geriatric Depression Scale (GDS). RESULTS: The mean SGRQ symptom, activity, impact and total scores were 38.0 +/- 19.3, 44.5 +/- 21.9, 34.2 +/- 17.9 and 39.4 +/- 17.4, respectively. These figures were lower than those reported in patients with chronic obstructive pulmonary disease who attended chest clinics. The GDS score (r = 0.38), forced expiratory volume in 1 s predicted (FEV(1)% predicted;r = -0.33) and comorbidity (r = 0.21) were the most important predictors of the HRQOL. CONCLUSIONS: Besides lung functions, chest clinicians should consider the impact of mood symptoms and comorbidity on the HRQOL in the management of patients with pneumoconiosis.

The Geriatric Depression Scale should be shortened: results of Rasch analysis.

BACKGROUND: The purpose of this study was to examine the unidimensionality, item fit, redundancy and differential item functioning (DIF) of the 15-item version of the Geriatric Depression Scale (GDS) in a community sample of 300 Hong Kong Chinese patients with pneumoconiosis. METHODS: Participants were randomly selected from the case register of the Pneumoconiosis Compensation Fund Board of Hong Kong. A trained research assistant administered the GDS to all participants. A psychiatrist, who was blind to the GDS scores, conducted a structured clinical interview to diagnose depressive disorders according to the Diagnostic and Statistical Manual for Mental Disorders, Version IV (DSM-IV) criteria. RESULTS: Of the 300 participants, 37 (12.3%) had a DSM-IV diagnosis of depressive disorders. Eleven out of 15 items (73.3%) had INFIT/OUTFIT statistics between 0.7-1.3. Abbreviated versions were created by removal of misfit and redundant items resulting in similar overall performance as the original 15-item GDS. None of the items had significant DIF for age, level of education and cognitive impairment. CONCLUSIONS: Although the GDS was overall unidimensional, there was evidence of item redundancy indicating that a shortened version would be as adequate as the original version.

Pneumoconiosis: a study of its effect on miners' health in South Wales 1900-1980.

Since its discovery in the late 19th century, pneumoconiosis has shaped the lives of thousands of miners. In some ways it became inextricably linked to the South Wales coal field and was a major public health threat to the men who worked in those mines. The disease was caused by the conditions of work and worsened the situation of many who were already living in poverty. This historical research account traces the miners' plight and touches on some of the public health issues raised by the disease.

Respiratory disease and suicide among U.S. coal miners: is there a relationship?

A case-control study was performed to test whether or not respiratory disease in coal miners presented a risk for suicide. While coal miners in general do not experience elevated rates of suicide, coal miners with respiratory disease have been found to have high rates of psychiatric disability, especially depressive reactions. Further, depression has been related to suicide. To test the hypothesis, 50 suicide deaths from four National Institute for Occupational Safety and Health cohorts of coal miners were matched by age at death to two series of controls, a noncancer, nonaccident control series, and a cancer control series. Using odds ratios (tested by chi-square) the risks of obstructive lung disease and coal workers pneumoconiosis were evaluated together with the risks of years of underground mining, cigarette smoking at the time of cohort creation, and ever having smoked cigarettes. Neither respiratory disease was found to pose a statistically elevated risk of suicide in this sample of U.S. white male coal miners.

Explanatory models of black lung: understanding the health-related behavior of Appalachian coal miners.

Many retired coal miners who are eligible for care in a black lung treatment center at little or no cost to themselves do not enter into available programs or discontinue soon after beginning therapy. Reasons for this behavior are related to the prevalent beliefs among Appalachians concerning the course of black lung and the appropriate treatment for it. The miners' health beliefs are clearly at odds with those of the health care providers who work in the centers. Using the concept of explanatory model, popular and professional health cultures are analyzed, focusing on course of disease, sick role, appropriate treatment, and expected outcome. Differences in explanatory models are discussed with regard to implications for the organization and delivery of care to retired coal miners with black lung.