Ageing with Interstitial lung disease: preserving health and well being

Saketkoo, Lesley Ann; Ndili, Ogugua; Patterson, Karen; Russell, Anne-Marie

doi:10.1097/mcp.0000000000000880

Cited by 4 publications

(7 citation statements)

References 146 publications

(235 reference statements)

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“…We describe a framework containing four overarching domains that encapsulate holistic well-being [3,6 ▪▪ ,9 ▪▪ ,11,12,32,33] and focuses on the assessment and fortification of resilience in sarcoidosis and other multiorgan conditions. Figure 1 depicts an open-ended nonprescriptive confluence intended to invigorate opportunities for risk recognition, health education, personalization, and possibility centered on patients’ priorities and preferences.…”

Section: Framework For Holistic Well-beingmentioning

confidence: 99%

“…cognitive-psychological well-being (Table 2) [3,9 ▪▪ ,35 ▪▪ ,36 ▪▪ ,37 ▪▪ ,38,39] which involves awareness of domain-relevant history and changes, and includes communication access and literacy, sensory optimization, social connectedness, memory, capacity to learn, self-governance, sense of purpose, interest and pleasure…”

Section: Framework For Holistic Well-beingmentioning

confidence: 99%

“…Concepts of frailty risk are presented from the lens of preserving holistic well-being when living with sarcoidosis, with the consideration of ageless holistic resilience as a unifying concept in frailty prevention. The framework is informed by previous work [3,6 ▪▪ ,9 ▪▪ ,10 ▪ ] on patient-experiences in sarcoidosis, in interstitial lung disease (ILD) and frailty in ILD. This study sets out to support clinicians in considering early, ageless and positive health-centred strategies for frailty prevention in sarcoidosis [11]…”

Section: Introductionmentioning

confidence: 99%

“…Healthcare access and adequacy correlate with disparities in race and ethnicity and with lower socioeconomic status, which impact sarcoidosis-related death and disability [4 ▪▪ ,6 ▪▪ ,8 ▪▪ ]. These factors are crucial influences on outcomes for reversible/modifiable risk for frailty [8 ▪▪ ,9 ▪▪ ].…”

Section: Introductionmentioning

confidence: 99%

“…)[3,9 Factors of Societal Vulnerability that Influence Holistic Resilience in Sarcoidosis Factors of Societal Vulnerability include health risk factors related to the following living areas:…”

mentioning

confidence: 99%

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Sarcoidosis and frailty: recognizing factors that foster holistic resilience

Saketkoo,

Russell,

Patterson

et al. 2023

Current Opinion in Pulmonary Medicine

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Purpose of review Sarcoidosis is a multiorgan system disease exerting significant impact on biophysical, social, psychological and emotional well-being. Mortality and disability correlate to accessible, timely, expert care for sarcoidosis and its related complications. Across health conditions, positive healthcare interactions and interventions can rehabilitate unfavourable factors tied to concepts of ‘frailty’. Here, we set out to introduce concepts related to frailty and their impact in the context of sarcoidosis. Recent findings Studies examining frailty across other multiorgan and single organ-based diseases that mirror organ involvement in sarcoidosis demonstrate findings that bear relevance in sarcoidosis. Namely, factors predisposing a person to frailty are a multifactorial phenomenon which are also reflected in the lived experience of sarcoidosis; and that early diagnosis, intervention and prevention may alter a course towards more favourable health outcomes. Summary Factors predisposing to frailty in other health conditions may also signal a risk in sarcoidosis. In turn, proactive health preservation – regardless of age – may lead to improved biopsychosocial reserve and health-related quality of life. Fortifying holistic resilience in sarcoidosis is anticipated to reduce risk of the occurrence and prolongation of health-related complications, and facilitate swifter recovery from biophysical complications as well as from psychosocial and emotional stressors.

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Section: Framework For Holistic Well-beingmentioning

confidence: 99%

Section: Framework For Holistic Well-beingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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Sarcoidosis and frailty: recognizing factors that foster holistic resilience

Saketkoo,

Russell,

Patterson

et al. 2023

Current Opinion in Pulmonary Medicine

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Multi-Organ System Screening, Care, and Patient Support in Systemic Sclerosis

Varjú¹,

Pauling²,

Saketkoo³

2023

Rheumatic Disease Clinics of North America

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Supporting self-management for patients with Interstitial Lung Diseases: Utility and acceptability of digital devices

Althobiani,

Shuttleworth,

Conway

et al. 2024

PLOS Digit Health

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Introduction Patients diagnosed with Interstitial Lung Diseases (ILD) use devices to self-monitor their health and well-being. Little is known about the range of devices, selection, frequency and terms of use and overall utility. We sought to quantify patients’ usage and experiences with home digital devices, and further evaluate their perceived utility and barriers to adaptation. Methods A team of expert clinicians and patient partners interested in self-management approaches designed a 48-question cross-sectional electronic survey; specifically targeted at individuals diagnosed with ILD. The survey was critically appraised by the interdisciplinary self-management group at Royal Devon University Hospitals NHS Foundation Trust during a 6-month validation process. The survey was open for participation between September 2021 and December 2022, and responses were collected anonymously. Data were analysed descriptively for quantitative aspects and through thematic analysis for qualitative input. Results 104 patients accessed the survey and 89/104 (86%) reported a diagnosis of lung fibrosis, including 46/89 (52%) idiopathic pulmonary fibrosis (IPF) with 57/89 (64%) of participants diagnosed >3 years and 59/89 (66%) female. 52/65(80%) were in the UK; 33/65 (51%) reported severe breathlessness medical research council MRC grade 3–4 and 32/65 (49%) disclosed co-morbid arthritis or joint problems. Of these, 18/83 (22%) used a hand- held spirometer, with only 6/17 (35%) advised on how to interpret the readings. Pulse oximetry devices were the most frequently used device by 35/71 (49%) and 20/64 (31%) measured their saturations more than once daily. 29/63 (46%) of respondents reported home-monitoring brought reassurance; of these, for 25/63 (40%) a feeling of control. 10/57 (18%) felt it had a negative effect, citing fluctuating readings as causing stress and ‘paranoia’. The most likely help-seeking triggers were worsening breathlessness 53/65 (82%) and low oxygen saturation 43/65 (66%). Nurse specialists were the most frequent source of help 24/63 (38%). Conclusion: Patients can learn appropriate technical skills, yet perceptions of home-monitoring are variable; targeted assessment and tailored support is likely to be beneficial.

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Ageing with Interstitial lung disease: preserving health and well being

Cited by 4 publications

References 146 publications

Sarcoidosis and frailty: recognizing factors that foster holistic resilience

Sarcoidosis and frailty: recognizing factors that foster holistic resilience

Multi-Organ System Screening, Care, and Patient Support in Systemic Sclerosis

Supporting self-management for patients with Interstitial Lung Diseases: Utility and acceptability of digital devices

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