Dataset Information

The Role of Genetic Testing in Pulmonary Fibrosis: A Perspective From the Pulmonary Fibrosis Foundation Genetic Testing Work Group.

ABSTRACT: Patients with familial pulmonary fibrosis represent a subset of patients with pulmonary fibrosis in whom inherited gene variation predisposes them to disease development. In the appropriate setting, genetic testing allows for personalized assessment of disease, recognition of clinically relevant extrapulmonary manifestations, and assessing susceptibility in unaffected relatives. However currently, the use of genetic testing is inconsistent, partly because of the lack of guidance regarding high-yield scenarios in which the results of genetic testing can inform clinical decision-making. To address this, the Pulmonary Fibrosis Foundation commissioned a genetic testing work group comprising pulmonologists, geneticists, and genetic counselors from the United States to provide guidance on genetic testing in patients with pulmonary fibrosis. This CHEST special feature presents a concise review of these proceedings and reviews pulmonary fibrosis susceptibility, clinically available genetic testing methods, and clinical scenarios in which genetic testing should be considered.

SUBMITTER: Newton CA

PROVIDER: S-EPMC9424324 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

The Role of Genetic Testing in Pulmonary Fibrosis: A Perspective From the Pulmonary Fibrosis Foundation Genetic Testing Work Group.

Newton Chad A CA Oldham Justin M JM Applegate Carolyn C Carmichael Nikkola N Powell Karen K Dilling Dan D Schmidt Shelley L SL Scholand Mary Beth MB Armanios Mary M Garcia Christine Kim CK Kropski Jonathan A JA Talbert Janet J

Chest 20220323 2

Patients with familial pulmonary fibrosis represent a subset of patients with pulmonary fibrosis in whom inherited gene variation predisposes them to disease development. In the appropriate setting, genetic testing allows for personalized assessment of disease, recognition of clinically relevant extrapulmonary manifestations, and assessing susceptibility in unaffected relatives. However currently, the use of genetic testing is inconsistent, partly because of the lack of guidance regarding high-y ...[more]

PMID: 35337808

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Project description:Burnout in healthcare professionals can lead to adverse effects on physical and mental health, lower quality of care, and workforce shortages as employees leave the profession. Hospice professionals are thought to be at particularly high risk for burnout. The purpose of the study was to evaluate workplace perceptions of interdisciplinary hospice care workers who provide care to patients at end of life. Six focus groups and one semi-structured interview were conducted with mixed group of social workers, managers, nurses, hospice aides, chaplains, support staff, and a physician (n = 19). Findings from the groups depicted both rewards and challenges of hospice caregiving. Benefits included intrinsic satisfaction from the work, receiving positive patient and family feedback, and teamwork. Challenges reflected issues with workload, technology issues, administrative demands, travel-related problems, communication and interruptions, difficulties with taking time off from work and maintaining work-life integration, and coping with witnessing grief/loss. Hospice workers glean satisfaction from making meaningful differences in the lives of patients with terminal illness and their family members. It is an expected part of the job that certain patients and situations are particularly distressing; team support and targeted grief support is available for those times. Participants indicated that workload and administrative demands rather than dealing with death and dying were the biggest contributors to burnout. Participants reported episodic symptoms of burnout followed by deliberate steps to alleviate these symptoms. Notably, for all except one of the participants, burnout was cyclical. Symptoms would begin, they would take steps to deal with it (e.g., taking a mental health day), and they recovered. At an organizational level, a multipronged approach that includes both personal and occupational strategies is needed to support professional caregivers and help mitigate the stressors associated with hospice work.

Dataset Information

The Role of Genetic Testing in Pulmonary Fibrosis: A Perspective From the Pulmonary Fibrosis Foundation Genetic Testing Work Group.

Publications

The Role of Genetic Testing in Pulmonary Fibrosis: A Perspective From the Pulmonary Fibrosis Foundation Genetic Testing Work Group.

Similar Datasets

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