Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion

Thickett, David; Kendall, Clare; Spencer, Lisa; Screaton, Nick; Wallace, William; Pinnock, Hilary; Bott, Julia; Pigram, Lucy; Watson, Sarah; Millar, Ann

doi:10.1136/thoraxjnl-2014-206284

Cited by 33 publications

(37 citation statements)

References 22 publications

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“…As discussed in the introductory section, it has not been demonstrated that this approach results in improved survival or QoL for IPF patients; nevertheless, experts recommend this approach for IPF patients in tertiary reference centres for ILDs, mainly based on the experience derived from cancer and other progressive diseases [19]. A very important task for the multidisciplinary/interdisciplinary teams will be to show how this approach is beneficial for IPF patients and eventually to explore the possibility of delegating some of its components to healthcare players in the field.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, three radiologists, one pathologist and one physiologist work closely with the team, taking regular part in monthly multidisciplinary conferences. The costs of this approach are high, and policies and guidelines recommend it only in tertiary, specialised reference centres [19], where patients with relatively rare diseases should be referred.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, the possibility to build a multidisciplinary team is strictly dependent on local resources, so great variability can be expected across the same healthcare system and especially among different countries and cultures/continents [20]. Although based on expert opinion with very few studies supporting this approach, it is recommended that access to specialised healthcare professionals should be regulated via referrals from primary care to specialists and thereafter to specialised centres [19]. At the tertiary level, a very important role is played by nurses specialising in the care of patients with ILDs [21,22].…”

Section: Multidisciplinary Care For Patients With Ipfmentioning

confidence: 99%

“…Multidisciplinary conferences have rapidly become the main way to ensure quality and consistency in the diagnostic process, especially in university hospitals, and are recommended as the best possible "gold standard" for diagnosis in difficult cases [1,18]. Highly specialised centres for the diagnosis and treatment of interstitial lung diseases (ILDs) have been developed and have been recommended by expert panels for the UK National Health Service on the model of current cancer services [19].…”

Section: Multidisciplinary Care For Patients With Ipfmentioning

confidence: 99%

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Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions

Ferrara

Luppi²,

Birring

et al. 2018

Eur Respir Rev

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Best supportive care (BSC) is generally defined as all the interventions and the multiprofessional approach aimed to improve and optimise quality of life (QoL) in patients affected by progressive diseases. In this sense, it excludes and might be complementary to other interventions directly targeting the disease. BSC improves survival in patients with different types of cancer. Patients with idiopathic pulmonary fibrosis (IPF) experience a vast range of symptoms during the natural history of the disease and might have a beneficial effect of BSC interventions. This review highlights the current evidence on interventions targeting QoL and gaps for the clinical assessment of BSC in the treatment of IPF patients. Very few interventions to improve QoL or improve symptom control are currently supported by well-designed studies. Sound methodology is paramount in evaluating BSC in IPF, as well as the use of validated tools to measure QoL and symptom control in this specific group of patients.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Multidisciplinary Care For Patients With Ipfmentioning

confidence: 99%

Section: Multidisciplinary Care For Patients With Ipfmentioning

confidence: 99%

See 2 more Smart Citations

Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions

Ferrara

Luppi²,

Birring

et al. 2018

Eur Respir Rev

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“…Since then, we have been asked on several occasions whether this phenomenon can perhaps also explain another apparent anomaly between these two trials, and a challenge in interpretation, namely the "mixed results in terms of … exacerbations" [3]. Indeed, the effects of treatment on investigator-reported acute exacerbations between the INPULSIS-1 and INPULSIS-2 trials were also heterogeneous [1].…”

mentioning

confidence: 99%

The INPULSIS trials of idiopathic pulmonary fibrosis treatment: explaining further discrepancies on exacerbations

Suissa

Ernst

2015

Eur Respir J

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In a recent paper on the INPULSIS trials, two duplicate 1-year randomised controlled trials evaluating nintedanib in the treatment of idiopathic pulmonary fibrosis (IPF) [1], we provided the methodological explanation for the apparent inconsistent results arising from the two different definitions of exacerbations used in those studies [2]. These trials reported vastly different findings in their pooled analysis [1]. Indeed, the risk of an investigator-reported acute exacerbation was lower by 36% with nintedanib compared with placebo but not statistically significant ( p=0.08), while, after adjudication according to a complex definition involving multiple criteria, the risk was lower by 68% and statistically significant ( p=0.001). We explained that such differences in risk reductions and in statistical significance are simply the result of including outcome events that are not actual exacerbations, leading to the phenomenon of treatment effect dilution and false nonsignificant effects [2]. The correct risk reduction of 68% based on the accurate adjudicated events is diluted to a less impressive and now nonsignificant risk reduction of 36% when "false" events were added in the same proportion to both groups.

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A narrative literature review of palliative care regarding patients with idiopathic pulmonary fibrosis

Igai

2018

Nursing Open

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AimThe aim of this study was to examine the reported characteristics of extant studies on palliative care for patients with idiopathic pulmonary fibrosis.DesignNarrative review.MethodsA comprehensive search of the following electronic databases in English and Japanese commenced from 2002 ‐ December 2017. Eligibility criteria was determined by the inclusion and exclusion criteria.ResultsNineteen articles were eligible. The characteristics of palliative care for patients with idiopathic pulmonary fibrosis were symptoms relief, start time of palliative care and palliative care needs of patients and care partners. Also, patients' education of disease management including advanced care planning and developing a palliative care system by the healthcare provider including multidisciplinary professional teams was identified. The care provided was a “care conference” and integrated palliative care was carried out in the patient's home. The majority of the studies were qualitative and retrospective in design. The palliative care system and the development of palliative care were limited.

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Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion

Cited by 33 publications

References 22 publications

Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions

Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions

The INPULSIS trials of idiopathic pulmonary fibrosis treatment: explaining further discrepancies on exacerbations

A narrative literature review of palliative care regarding patients with idiopathic pulmonary fibrosis

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