Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary
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.
Keywords: : Interstitial lung disease; disparity; exercise; exerkines; frailty; health-related quality of life; holistic well-being; myokines; myositis; patient-centered; physical activity; pulmonary fibrosis; resilience; sarcoidosis; survival; systemic sclerosis
Document Type: Research Article
Affiliations: 1: From the New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, Louisiana; 2: Division of Pulmonary, Critical Care and Sleep Medicine, Department of Internal Medicine, Brody School of Medicine, East Carolina University, Greenville, North Carolina; 3: Department of Pulmonology, Semmelweis University, Budapest, Hungary; 4: Occupational Therapy Graduate Program, School of Medicine, University of New Mexico, Albuquerque, New Mexico; 5: Department of Rheumatology and Immunology, Medical School, University of Pécs, Hungary; 6: Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital and Division for Occupational Therapy, Karolinska Institutet, Stockholm, Sweden; 7: Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland; 8: Division of Rheumatology, University of Pittsburgh, Pittsburgh, Pennsylvania; 9: Division of Rheumatology, Albany Medical College, Albany, New York; 10: Spierziekten Nederland (Dutch patient association for NeuroMuscular Diseases), Baarn, The Netherlands; 11: Tulane University School of Medicine, New Orleans, Louisiana; 12: Federation of European Scleroderma Associations, Saint Maur, Belgium; 13: Division of Rheumatology Immunology, Department of Internal Medicine, Vanderbilt University Medical Center and Tennessee Valley Healthcare System, Nashville, Tennessee; 14: Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, United Kingdom; 15: Division of Pulmonary Medicine, Cleveland Clinic Foundation, Cleveland, Ohio; 16: Division of Rheumatology, Seattle Children’s Hospital, Seattle, Washington; 17: Centre for Rheumatology and Department of Neuromuscular Diseases, University College London, London, United Kingdom; 18: Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom; 19: Division of Rheumatology, Departments of Internal Medicine and Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama; 20: Department of Physiotherapy and Rehabilitation, Faculty of Physical Therapy and Rehabilitation, Bingöl University, Bingöl, Turkey; 21: Patient Research Partner, Myositis International Health and Research Collaborative Alliance, (MIHRA Foundation), Seaside Park, New Jersey; 22: University Medical Center - Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, Louisiana; 23: Rehabilitation Center Klimmendaal, Arnhem, the Netherlands; 24: Division of Rheumatology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, California; 25: Division of Pediatric Rheumatology, Children’s Hospital at Montefiore, Bronx, New York; 26: Brighton and Sussex Medical School, Farmer, United Kingdom; and 27: School of Nursing and Midwifery, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom.
Publication date: October 1, 2024
- The Journal of Precision Respiratory Medicine (JPRM) is a peer reviewed publication dedicated to distributing timely information regarding cutting edge advancements in the knowledge and practice of respiratory medicine. Its primary readership extends to all medical providers with an interest in respiratory diseases.
The incorporation of the term, 'precision medicine' in its title serves to direct the journal's focus on this revolutionary approach to disease prevention and treatment that takes into account the individual differences which result from the interplay of lifestyle, environment and human biology/genetics.
JPRM seeks to publish articles characterized by both a predominant clinical focus and by having the potential to directly impact the quality of patient care. JPRM welcomes the submission of original works including peer-reviewed original research and clinical trial results. Additionally, as the official journal of the Eastern Pulmonary Conference (EPC) JPRM will publish content from EPC poster sessions as well as review articles derived from EPC lectures.
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