Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary

Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and physical function. Thus, ILD can accelerate age-related vulnerabilities that lead to early onset frailty, which makes frailty prevalent in ILD at any age. Frailty confers a three-fold increase of, and predicts, mortality in ILD. Objective: To present a feasible approach to understanding and addressing holistic health in ILD to fortify physical and psychological capacity markedly enhances a person’s tolerance of ILD and aging. Methods: From our previous published work that consisted of serial Medline and PubMed scoping reviews (with search terms such as frailty, interstitial lung disease, ILD, idiopathic pulmonary fibrosis, IPF, systemic sclerosis, sarcoidosis, well-being), patient focus groups, ILD outcome measures deconstruction and linking to the World Health Organization’s International Classification of Disability, and nominal group processes, we iteratively isolated factors that seem to accelerate and, importantly, protect against and reverse frailty. These factors were presented at The Eastern Pulmonary Conference in September 2024 and summarized herein. Results: The result is a collective statement that (a) summarizes health-care system responsibilities in providing sustainable, humane environments for patients and clinicians; (b) advocates for early intervention and shared decision-making from the time of diagnosis to fortify well-being when living with ILD; and (c) offers guidance to fortify physical, mental, and social well-being as well as health literacy and strength of patient voice. Conclusion: Proactive measures to protect against frailty begins at the time of diagnosis. Interventions that are incremental and based on patient priorities and preferences introduce a feasible approach to holistic well-being.

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Publication Details

Journal
Journal of Precision Respiratory Medicine
Published
2024-10-01
DOI
https://doi.org/10.2500/jprm.2024.7.240003
Citations
2
Primary Topic
Health, psychology, and well-being
Type
article
Field-Weighted Citation Impact
1.70

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article

Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary

Latika Gupta, Didem Saygın, Henrik Pettersson, Malin Regardt et al.
2 citations
Journal of Precision Respiratory Medicine
Health, psychology, and well-being
1.70
article

Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary

Latika Gupta, Didem Saygın, Henrik Pettersson, Malin Regardt, Elizabeth R. Volkmann, Kim Fligelstone, Fulden Sarı, Helene Alexanderson, Cecília Varjú, Susan Shenoi, Lee Shapiro, Anne‐Marie Russell, Karen Patterson, Antonia Valenzuela, Julie J. Paik, Nicoline Voet, Eileen C. Rife, Dawn M. Wahezi, Tracy Frech, János Tamás Varga, Pedro Machado, Robyn T. Domsic, Janet L. Poole, Humza Ahmad Chaudhry, Sue Maillard, Aviya Lanis, Barbara Shafranski, Lesley Ann Saketkoo, Kristin B. Highland, Ingrid de Groot, N Ogugua
article en
2 citations

Abstract

Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and physical function. Thus, ILD can accelerate age-related vulnerabilities that lead to early onset frailty, which makes frailty prevalent in ILD at any age. Frailty confers a three-fold increase of, and predicts, mortality in ILD. Objective: To present a feasible approach to understanding and addressing holistic health in ILD to fortify physical and psychological capacity markedly enhances a person’s tolerance of ILD and aging. Methods: From our previous published work that consisted of serial Medline and PubMed scoping reviews (with search terms such as frailty, interstitial lung disease, ILD, idiopathic pulmonary fibrosis, IPF, systemic sclerosis, sarcoidosis, well-being), patient focus groups, ILD outcome measures deconstruction and linking to the World Health Organization’s International Classification of Disability, and nominal group processes, we iteratively isolated factors that seem to accelerate and, importantly, protect against and reverse frailty. These factors were presented at The Eastern Pulmonary Conference in September 2024 and summarized herein. Results: The result is a collective statement that (a) summarizes health-care system responsibilities in providing sustainable, humane environments for patients and clinicians; (b) advocates for early intervention and shared decision-making from the time of diagnosis to fortify well-being when living with ILD; and (c) offers guidance to fortify physical, mental, and social well-being as well as health literacy and strength of patient voice. Conclusion: Proactive measures to protect against frailty begins at the time of diagnosis. Interventions that are incremental and based on patient priorities and preferences introduce a feasible approach to holistic well-being.

Journal of Precision Respiratory MedicineVol. 7(1)
Brighton and Sussex Medical School (GB), Semmelweis University (HU), Tulane University (US), Seattle Children's Hospital (US), Cleveland Clinic (US), Karolinska University Hospital (SE), Johns Hopkins University (US), Bingöl University (TR), University of California, Los Angeles (US), University of New Mexico (US), University of Pittsburgh (US), East Carolina University (US), Johns Hopkins Medicine (US), Great Ormond Street Hospital for Children NHS Foundation Trust (GB), Karolinska Institutet (SE), University of Alabama at Birmingham (US), VA Tennessee Valley Healthcare System (US), University Hospital and Clinics (US), Children's Hospital at Montefiore (US), The Royal Wolverhampton NHS Trust (GB), Wolverhampton Hospital (GB), University College London (GB), Albany Medical Center Hospital (US), University of Pecs (HU), Vanderbilt University Medical Center (US)
Vanderbilt University, Cleveland Clinic, Cleveland Clinic Foundation, Tulane University, Johns Hopkins University, University of Pittsburgh, Louisiana State University, East Carolina University, Brody School of Medicine, Seattle Children's Research Institute, Vanderbilt University Medical Center, University College London, University of Manchester, Radboud Universiteit, Semmelweis Egyetem, Great Ormond Street Hospital for Children, Karolinska Institutet, Radboud Universitair Medisch Centrum, Scleroderma and Raynaud's UK, University College London Hospitals NHS Foundation Trust, European League Against Rheumatism, Pécsi Tudományegyetem, Bingöl Üniversitesi, National Institutes of Health, Directorate for Biological Sciences, University of California, Los Angeles, School of Medicine, University of New Mexico, Általános Orvostudományi Kar, Pécsi Tudományegyetem, National Heart, Lung, and Blood Institute, National Institute of Arthritis and Musculoskeletal and Skin Diseases, David Geffen School of Medicine, University of California, Los Angeles
Quality Education
Openalex Percentile: Top 13%
Health, psychology, and well-being
1.70
DOIOpen Access PDFOpenAlex
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