Background Nintedanib has been shown to slow disease progression in patients with idiopathic pulmonary fibrosis (IPF). It was approved by the National Institute for Health and Care Excellence (NICE) in January 2016 for IPF patients with a forced vital capacity (FVC) of 50–80% in the United Kingdom (UK). Aim To report real world data about our early clinical experience using nintedanib in 187 patients with a multi-disciplinary (MDT) diagnosis of IPF in a manufacturer funded patient in need scheme (three UK centres) prior to NICE approval. Methods All patients with a MDT diagnosis of IPF from December 2014 to January 2016 commenced on nintedanib were included. Demographic details, adverse events (AEs) and where available lung function results were retrospectively collected from clinical letters. Results 187 patients (76% males) with a median age of 72 years (49–89) were treated with nintedanib. The average pre-treatment FVC was 81.1 ± 19.8% and diffusion capacity of the lungs for carbon monoxide was 43.9 ± 15% (n = 82). Fifty percent of patients started nintedanib because they were ineligible for pirfenidone due to an FVC > 80%. The median treatment course was 8 ± 4 months. The majority of patients experienced 1–3 AEs with nintedanib (52%, n = 97). The most frequent AEs were diarrhoea (50%), nausea (36%), reduced appetite (24%), tiredness (20%) and gastro-oesophageal reflux (18%). The majority of AEs resulted in no change in treatment (64%, n = 461). 21% (n = 150) of AEs resulted in a dose reduction and 13% (n = 94) necessitated discontinuation of treatment. 1 in 5 patients discontinued treatment either temporarily or on a permanent basis during the monitoring period. In a select cohort of patients, a statistically significant greater proportion of patients remained stable or improved and a lower proportion declined, as depicted by FVC changes of > 5% after nintedanib commencement (P < 0.05 using Chi squared test). Conclusions Nintedanib is well tolerated and has an acceptable safety profile. Only 8% of those reporting diarrhoea discontinued treatment either on a temporary or permanent basis. There were no signals with respect to increased cardiovascular morbidity or major bleeding risk. This is in keeping with the INPULSIS clinical trial findings but in a real world cohort.

Participants described the transition period as a difficult time for both the YP and their families, with a perceived lack of adult services available for them. All groups agreed that the pilot project had a positive impact on the YP and their families, with the social benefits highlighted as a key factor. All participants were keen for the project to continue, ideally on a more frequent basis with more overnight stays, and the parents were keen to be more involved in the running of the service. Conclusion The key stakeholders in this service were all positive regarding the impact the service has had on the YP and their families, and were keen to see it continue. This pilot models a service that could be adopted by other organisations. A patient's preferred place of death (PPD) is frequently used as a marker for quality of end of life care. However, surveys of patients with life-limiting conditions indicate that "dying in preferred place" is not their highest priority (Actions for End of Life Care NHSE 2014-2016. As end of life approaches other priorities often take precedence and PPD may change. Aim of our audit To establish how many inpatients referred to our hospital Supportive and Palliative Care Team (SPCT) had PPD recorded, what their preferences were and whether they changed. Methods Data was extracted retrospectively from a database of inpatient deaths referred to the SPCT between July and August 2016 Results 63 patients had a PPD recorded -33 patients at initial consultation and 30 patients at subsequent consultation. Initial PPD was acute hospital (25), home (16), no preference (9), hospice (9), care home (4).13 patients (21%) changed their PPD during their admission. 6 patients with initial PPD home or hospice changed to acute hospital. 4 people changed their preference to care home (from hospice or home). From 16 patients whose initial PPD was home, this remained their final preference in 7 cases. 6 patients changed their PPD more than once. Conclusions Our data shows that almost half of patients do not discuss PPD at initial consultation but are happy to state preferences subsequently. This could be due to development of rapport and relationship with SPCT members. Interestingly, PPD changed during the hospital admission in one fifth of cases with the majority electing to not spend last days of life at home. This could be due to changes in condition, symptoms and performance status coupled with perceived burden on caregivers. Discussing preferences for place of death should be a dynamic process as care related priorities may change as end of life approaches. Background A scoping exercise and literature review of national and local initiatives highlighted innovation and evaluation as critical elements of change within the healthcare system, where NHS policies require healthcare professionals to research effective ways to deliver healthcare, including evaluation and service improvement. Gaps were identified through reflection in and on practice, within a dyspnoea clinic in a palliative care setting. Th...

No abstract

BackgroundDysponea, muscle wasting, and fatigue are common manifestations in interstitial lung disease (ILD). Pulmonary rehabilitation programmes (PRP) aim to improve symptoms and quality of life in ILD but research is very limited about the role and feasibility of inspiratory muscle training (IMT) in PRP.MethodsSix patients with a mixed disciplinary team diagnosis of ILD (5 males, median age 80 range 67–85) participated in a tailored PRP either in an IMT (n=3) or control group (n=3). PRP involved three days of exercises, one conducted in a hospice day therapy unit and two at home. The PRP session involved aerobic, strength, and stretching exercises with integrated education and relaxation sessions. Both groups received the same PRP, supplemented in the IMT group by the use of a POWERbreathe Medic plus respiratory muscle trainer. The trainer use consisted of 30 breaths twice daily with personalised resistance levels of 40% Maximal Inspiratory Pressure (MIP), which was measured and adjusted weekly. ILD outcome measures were recorded before and after PRP.ResultsAll patients completed the PRP with adherence of ≥80% for the full program. There were no major complications or adverse events and patients reported liking and enjoying the PRP and environmental setting. Table 1 report the PRP outcomes. Description: there was a considerable prevalence of baseline limitation in term of depression, anxiety, fatigue severity scale (FSS), forced vital capacity (FVC) and six-minute walk test (6MWT). These limitations were maintained after PRP and there was a reduction in FVC in both groups, consistent with disease progression. In the IMT group there was a trend for an improvement in MIP, 6MWT, FSS, and visual analogue fatigue scale and a maintenance of quadriceps strength when compared with the control group.Abstract P159 Table 1IMTControl OutcomesNormal ValuesBefore PRP (mean±SD)After PRP (mean±SD)Before PRP (mean±SD)After PRP (mean±SD) K-Bild 10570.0+1572±568±1469±12Depression 0–74±2.644.67±0.5776.33±5.775.33±6.65Anxiety 0–76±1.736.33±0.5775.0±2.6464.33±3.22FSS 946±2041±745.0±12.45±15Visual analogue Fatigue scale102.67±2.086.5±0.713.33±0.5774.67±3.51MIP (mmHg) (n=65 to 75)43±12.161.44±18.366.23±38.752.16±35.23FVC (L) 3.13±0.33 2.5±0.522.45±0.782.3±0.79Quadriceps strength(Newtons)289±67286±6328±164294±1216MWT (M) 380±49425±21355±207351±224The table reports the mean and standard deviation of outcomes measured in the pulmonary rehabilitation program.6MWT, six-minute walk test; IMT, inspiratory muscle training; SD, standard deviation; MIP, maximum inspiratory pressure; FVC, forced vital capacity; FSS, fatigue severity scale; KBild, King’s Brief Interstitial Lung Disease health status questionnaire.ConclusionWe believe this is the first description of a successful pilot of bespoke ILD PRP in a hospice and home setting. The PRP was acceptable and appreciated by both patients and healthcare professionals. IMT during PRP for ILD in a hospice setting is feasible and longitudinal measurements of fatigue, 6MWT, and MIP were practica...

Methodology Using Shropshire Doctors Co-operative Ltd (Shropdoc's) recorded data we have collated a representative picture of the palliative care practice over a year period from 161 OOHGP patient interactions. Results 31% of home visits (HV) had documentation of potential reversible factors and out of those 72% were with the patient's estimated prognosis greater than 48 hours. Infection being the most common (57%) reversible factor, the majority being a lower respiratory tract infection. Overall 5.7% of OOH GP palliative HV's resulted in hospital admission, however this decreased to 0.6% adjusting for an estimate of the patient's prognosis to be less than 48 hours. 16% were admitted if the patient had a potentially reversible co-existing condition. 33% of consultations had documentation regarding a continuous subcutaneous infusion (CSCI), 86% of CSCI interventions were made with a prognosis of less than 48 hours. There were CSCI infusion issues requiring an OOHGP 3.4% of the time. Overall anticipatory medications were prescribed 39% of the time. Conclusion The OOHGP deals with a wide variety of scenarios for a heterogeneous population. The symptoms and treatments instigated are on the most part expected within emergency palliative care. This data begins to quantify and describe the role being performed by OOHGP and has implications for service provision and potentially the necessity of 24 hour specialist palliative provision.