49 Review of potential geographical disparities in access to anti-fibrotic medication and clinic-based specialist palliative care for patients with idiopathic pulmonary fibrosis

Wakefield, Kym; Palmer, Evelyn; Donaldson, Claire; Bourke, Anne-Marie; Forrest, Ian

doi:10.1136/spcare-2019-mariecuriepalliativecare.49

Cited by 2 publications

(3 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…25 These results imply a geographical disparity in access to palliative care, which has also been identified in previous work by the North East and Cumbria interstitial lung disease service. 39,40 Variability in access to specialist palliative care services is also known to be an issue for patients with other chronic respiratory diseases. 41 Referral to palliative care services is likely to be influenced by healthcare professionals' familiarity with local services and whether specialist services exist.…”

Section: Comparison With Other Workmentioning

confidence: 99%

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

et al. 2021

Self Cite

View full text Add to dashboard Cite

Background: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. Aim: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. Design: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). Data sources: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. Results: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. Conclusions: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

show abstract

Section: Comparison With Other Workmentioning

confidence: 99%

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

et al. 2021

Self Cite

View full text Add to dashboard Cite

show abstract

“…The described service structure barriers to advance care planning described are not unique and have previously been reported by other tertiary regional services. 19–21 A lack of clarity and information sharing is described. Regional and local services need clear understanding of each other’s working practices.…”

Section: Discussionmentioning

confidence: 99%

“…Regional and local services need clear understanding of each other's working practices. 19,20 Agreements regarding responsibility and communication may facilitate good advance care planning and palliative care. Indicators of deterioration, such as frequent admissions, should be highlighted to regional and local teams.…”

Section: Servicementioning

confidence: 99%

Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients’ and healthcare professionals’ recommendations

Kavanagh,

Rowley,

Simkiss

et al. 2023

Palliat Med

View full text Add to dashboard Cite

Background: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. Aim: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. Study design: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. Results: Three themes (‘overlooked’, ‘disjointed care’ and ‘awareness and expertise’) were identified. Patients with chronic obstructive pulmonary disease are a ‘forgotten about’ population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. Conclusions: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.

show abstract

49 Review of potential geographical disparities in access to anti-fibrotic medication and clinic-based specialist palliative care for patients with idiopathic pulmonary fibrosis

Cited by 2 publications

References 0 publications

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients’ and healthcare professionals’ recommendations

Contact Info

Product

Resources

About