Development and applicability of a dignity‐centred palliative care programme for people with idiopathic pulmonary fibrosis: A qualitative‐driven mixed methods study

Igai, Yasuko; Porter, Sarah

doi:10.1002/nop2.1274

Cited by 3 publications

(2 citation statements)

References 80 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…13 studies reported narrative results ( supplement 2.2 ). The importance of HCPs and peer support was highlighted most often [ 25 , 28 , 30 , 39 , 48 , 52 , 67 , 92 , 99 ]. Support from HCPs was sought in various settings ( i.e.…”

Section: Resultsmentioning

confidence: 99%

“…62 (71%) studies reported no AEs. 12 (14%) studies reported deaths in the intervention group [ 29 , 35 , 43 , 45 , 49 , 52 , 54 , 66 , 74 , 79 , 86 , 99 ] and 14 (16%) reported other reasons for not completing the intervention [ 27 , 34 , 38 , 42 , 46 , 50 , 52 , 55 , 60 , 72 , 73 , 81 , 100 , 108 ]; however, no links between the study intervention and death or noncompletion were reported. Reasons for noncompletion included acute exacerbation, other respiratory-related issues, nonrespiratory health issues and personal reasons such as lack of motivation, being called to receive lung transplantation and transportation problems.…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Self-management interventions for people with pulmonary fibrosis: a scoping review

Lee,

Tikellis,

Dowman

et al. 2023

Eur Respir Rev

View full text Add to dashboard Cite

BackgroundThe most effective method for encouraging self-management in individuals with pulmonary fibrosis (PF) is unclear. This review aimed to identify common self-management components, the outcome measures used and the impact of these components in PF.MethodsA scoping review was conducted according to theJoanna Briggs Institute Manual for Evidence Synthesisusing Medline, Embase, PsychInfo, CINAHL and the Cochrane Central Register of Controlled Trials. Eligible studies included those with educational, behavioural or support components aimed at facilitating self-management among adults with PF and employed quantitative and/or qualitative methods.Results87 studies were included. Common self-management components included education (78%), managing physical symptoms (66%) and enhancing psychosocial wellbeing (54%). Components were predominantly delivered in a pulmonary rehabilitation setting (71%). No studies tested a PF-specific self-management package. Common outcome measures were 6-min walk distance (60%), St George's Respiratory Questionnaire (37%) and the Medical Research Council Dyspnoea scale (34%). Clinically significant improvements in these outcomes were seen in ≥50% of randomised controlled trials. Qualitative data highlighted the importance of healthcare professional and peer support and increased confidence in managing PF.ConclusionSelf-management components are commonly incorporated into pulmonary rehabilitation programmes rather than being offered as standalone packages. Future research should focus on testing PF-specific self-management packages and employ standardised outcome assessments that include self-efficacy and health-related behaviours.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Self-management interventions for people with pulmonary fibrosis: a scoping review

Lee,

Tikellis,

Dowman

et al. 2023

Eur Respir Rev

View full text Add to dashboard Cite

show abstract

Development and applicability of a dignity‐centred palliative care programme for people with idiopathic pulmonary fibrosis: A qualitative‐driven mixed methods study

Igai

Porter

2022

Nursing Open

Self Cite

View full text Add to dashboard Cite

Idiopathic pulmonary fibrosis (IPF) is a rare, intractable and fatal disease (Mei et al., 2022). Maher et al. (2021) target literature review covering 2009 to 2020 found 22 studies covering 12 countries. The adjusted incidence was from .09-1.30 per 10,000. The adjusted prevalence was from 3-4.51 per 10,000. The lowest incidence and prevalence were found in the Asia-Pacific countries with the exception of South Korea with the highest of all countries. Globally, the incidence is increasing (Maher et al., 2021;Strongman et al., 2018). Japanese people with IPF have a faster illness progressive course; deaths due to acute exacerbations are 40%, although, in other countries 25% died due to respiratory failure (Natsuizaka et al., 2014).

show abstract

The burden of cough in idiopathic pulmonary fibrosis and other interstitial lung diseases: a systematic evidence synthesis

Green,

Baldwin,

Pooley

et al. 2024

Respir Res

View full text Add to dashboard Cite

Background Cough remains a persistent symptom in patients with idiopathic pulmonary fibrosis (IPF) and other interstitial lung diseases (ILDs). To inform future research, treatment and care models, we conducted the first systematic synthesis of evidence on its associated burden. Methods A literature search was performed for articles published between January 2010 and October 2023 using databases including Embase, MEDLINE and the Cochrane Library. Studies in patients with IPF and other ILDs reporting cough-related measures were eligible for inclusion. Included studies were categorised based on the types of ILD they examined and their design. Study details, patient characteristics and outcomes were extracted, and the risk of bias was assessed. A narrative synthesis approach was employed to interpret the findings. Results Sixty-one studies were included: 33 in IPF, 18 in mixed-ILDs, six in connective tissue disease-associated-ILDs and four in sarcoidosis. Across the studies, a range of tools to assess cough and its impact were used. The most frequently used measures of cough were cough severity visual analogue scale (VAS) and objective cough counts, whereas the most frequently used health-related quality of life (HRQoL)/impact measures were the St. George’s Respiratory Questionnaire (SGRQ) and Leicester Cough Questionnaire (LCQ). In IPF, studies consistently reported correlations between various cough and HRQoL measures, including between cough VAS scores and objective cough counts, LCQ scores and SGRQ scores. Similar correlations were observed in studies in other ILDs, but data were more limited. Qualitative studies in both IPF and other ILDs consistently highlighted the significant cough-related burden experienced by patients, including disruption of daily activities, fatigue and social embarrassment. Although there were no studies specifically investigating the economic burden of cough, one study in patients with fibrotic ILD found cough severity was associated with workplace productivity loss. Conclusions Our study underscores the heterogeneity in assessing cough and its impact in IPF and other ILDs. The findings confirm the negative impact of cough on HRQoL in IPF and suggest a comparable impact in other ILDs. Our synthesis highlights the need for standardised assessment tools, along with dedicated studies, particularly in non-IPF ILDs and on the economic burden of cough.

show abstract

Development and applicability of a dignity‐centred palliative care programme for people with idiopathic pulmonary fibrosis: A qualitative‐driven mixed methods study

Cited by 3 publications

References 80 publications

Self-management interventions for people with pulmonary fibrosis: a scoping review

Self-management interventions for people with pulmonary fibrosis: a scoping review

Development and applicability of a dignity‐centred palliative care programme for people with idiopathic pulmonary fibrosis: A qualitative‐driven mixed methods study

The burden of cough in idiopathic pulmonary fibrosis and other interstitial lung diseases: a systematic evidence synthesis

Contact Info

Product

Resources

About