Transcript: Twitter Journal Club Tenth Meeting 8pm, Sunday 4th September 2011

Temel et al. (2010) Early Palliative Care for Patients with Metastatic NonSmallCell Lung Cancer, NEJM Available at http://bit.ly/nMBx0O Hosted by Natalie Silvey

twitjournalclub Good evening all and welcome to the tenth week of the journal club #twitjc -8:00 PM twitjournalclub The paper for tonight is Early Palliative Care in Patients with Metastatic NSCLC introduction can be found at http://t.co/8jos4iz #twitjc -8:01 PM docshannon @twitjournalclub apologies #twitJC. I am post-hen night and will soon be off to bed! See you next time ... -8:02 PM PaedsSHO I believe @drpaulmorgan sends his apologies ;) #twitjc -8:02 PM twitjournalclub The discussion points for tonight are at http://t.co/ORAcyB8 #twitjc -8:02 PM twitjournalclub Tonight I will be running events (@silv24), tonight is dedicated to my mum who is a lung cancer nurse specialist and to her patients #twitjc -8:03 PM twitjournalclub First of all, as ever, we start with introductions... #twitjc -8:03 PM fidouglas @PaedsSHO @drpaulmorgan "Tired and emotional?" #twitjc -8:03 PM PaedsSHO @fidouglas @drpaulmorgan Euphemistically #twitjc -8:04 PM silv24 Natalie, F2 in acute medicine and trying not to get my accounts mixed up #twitjc -8:05 PM fidouglas Fi - Med student. Looking forward to learning a bit more clinical stuff this evening. :-) #twitjc -8:05 PM PaedsSHO David, paediatrics trainee and man. #twitjc -8:05 PM iamdoctord Richard, Renal Reg in Belfast, with Nelson documentary on in the background #twitjc 8:06 PM dsdarbyshire #twitjc dan, soon to be anatomy dem -8:07 PM drgandalf52 Gandhi. ATF GP in Yorkshire/ University of Leeds, RCGP First5 lead and owner of www.egplearning.co.uk oh and a bit of a geek #twitjc -8:07 PM Chipara RT @twitjournalclub: The paper for tonight is Early Palliative Care in Patients with Metastatic NSCLC - introduction can be found at http://t.co/8jos4iz #twitjc -8:08 PM elaineleung Elaine. ST1 in O&G. Will try to contribute despite suboptimal effort this time ;) #twitjc -8:08 PM twitjournalclub As time is short (and I have MRCP revision to look forward to) I will start the discussion... #twitjc -8:09 PM twitjournalclub The paper does not mention what was involved in early palliative care. Does this detract from the beneficial effect shown? #twitjc -8:09 PM iamdoctord If the intervention is not described, it's difficult to reproduce... #twitjc -8:10 PM

drgandalf52 issue with point 1 is therefore is such treatment transportable to other centers as trial done in a top notch American institution #twitjc -8:11 PM fidouglas What would we expect the "palliative care interventions" to be? Is there a standard for this? #twitjc -8:11 PM silv24 Would have been good to know what it involved, symptom control, emotional support, other interventions... #twitjc -8:11 PM crashmatt @twitjournalclub It doesn't detract as such, but it does make it more difficult to assess and as @iamdoctord says, reporduce #twitjc -8:11 PM PaedsSHO "Early palliative care" seemed to consist of introduction to the palliative care specialists soon after diagnosis. #twitjc -8:12 PM PaedsSHO Exact interventions are much less clear #twitjc -8:12 PM dsdarbyshire #twitjc I think given the personalised nature of palliative care a definition will add little -8:12 PM elaineleung It would also be interesting to see the use of intervention like dexamethasone- assoc w. longer survival #twitjc -8:12 PM crashmatt @fidouglas IME standard interventions vary with trust #twitjc -8:12 PM silv24 It seems a very broad phrase to use when describing an intervention - palliative care encompasses many different things #twitjc -8:12 PM iamdoctord Has anyone looked at the guidelines the authors adapted from the National Consensus Project for Quality Palliative Care? #twitjc -8:13 PM elaineleung psycho/bio/social model would be a good way to divide interventions perhaps #twitjc 8:13 PM PaedsSHO @silv24 Indeed, and due to the nature of palliation, different patients need, and as such would receive, different care. #twitjc -8:13 PM drgandalf52 @elaineleung good point if dex used is the early increased appetite to account for improvements #twitjc -8:14 PM twitjournalclub Can apply the results to clinical practice in other hospitals if we don't actually know what they describe as palliative care? #twitjc -8:14 PM GPL41 #twitjc Surely it matters how the active arm differs from controls to establish what (if anything) is responsible for treatment effect? -8:15 PM iamdoctord Can we infer that some form of frequent consultation was involved? Did this prompt discussion of resusctation etc. #twitjc -8:15 PM iamdoctord RT @GPL41: #twitjc Surely it matters how the active arm differs from controls... #twitjc -8:15 PM PaedsSHO Unless the intervention is simply "introduction to palliative care team" #twitjc -8:15 PM crashmatt #twitjc Only in broad terms, specific learning opportunities are not fully realised. -8:16 PM dsdarbyshire #twitjc investigating the multiple aspects individually is a raft of other studies - this addresses introducing intervention x earlier -8:16 PM iamdoctord @dsdarbyshire I agree that this was the primary aim of the study... #twitjc -8:17 PM

silv24 @GPL41 completely agree, doesn't even mention in the supplementary appendix #TwitJC 8:17 PM iamdoctord Better than not at all? | @PaedsSHO: Unless the intervention is simply "introduction to palliative care team" #twitjc -8:17 PM GPL41 #twitjc if the important element is company, support and chatting for eg. Does it have to be delivered by trained staff? -8:18 PM fidouglas @iamdoctord @PaedsSHO Maybe it's just the fact the support network is set up and already in place?? #twitjc -8:18 PM twitjournalclub @GPL41 but we don't know that that is the important element from reading the paper #twitjc -8:19 PM fidouglas @twitjournalclub @GPL41 Presumably this paper is a springboard for further research into which aspects of palliative care work best. #twitjc -8:20 PM dsdarbyshire #twitjc the face validity of the finding is good and really adds power. I think I should do this. -8:20 PM iamdoctord @fidouglas @PaedsSHO knowing how they implement palliative care in the US, is it comparable to the UK setting? #twitjc -8:20 PM twitjournalclub Point 2 - Did the paper look for appropriate outcomes to measure? How useful were these outcomes & was result clinically relevant? #twitjc -8:21 PM drgandalf52 @fidouglas @twitjournalclub @GPL41 similar to the COPD BBLocker trial from a few weeks back #twitjc -8:21 PM iamdoctord What struck me about the results is that all patients in both arms were dead at almost the same time from intervention. #twitjc -8:22 PM silv24 @Manjit49 if you add the hashtag #twitjc to your tweets everyone involved can see them -8:23 PM iamdoctord Both median survival rate and QoL measures though are clinically relevant and patientorientated outcome measures #twitjc -8:24 PM silv24 Think the measure of quality of life was a good one, after all isn't that actually the most important thing?!! #twitjc -8:24 PM drgandalf52 interesting that the Hada score not as sig diff as the hadd and phq9 scores, would have thought would be with the extra visits #twitjc -8:25 PM PaedsSHO @silv24 When you've got NSCLC, yes. #twitjc -8:25 PM silv24 @iamdoctord metastatic NSCLC has an awful prognosis. Late diagnosis often #twitjc -8:26 PM fidouglas This figure gives a breakdown of the structure of the FACT-L questionnaire that was used in this paper. http://t.co/aO7GmwK #TwitJC -8:26 PM GPL41 #twitjc I was a bit worried about lost data/loss to fu - can anyone see how they accounted for this in analysis of data? -8:26 PM silv24 @PaedsSHO in most if not all conditions surely? Something often overlooked as well!! #twitjc -8:27 PM dsdarbyshire #twitjc the measures allow sensible conclusions to be drawn. I think a strong qualitative element is needed, another study perhaps -8:27 PM fidouglas @silv24 @PaedsSHO I feel that QALYs are going to get mentioned at some point... oh, wait... sorry... #twitjc -8:28 PM

PaedsSHO @silv24 In conditions, in life in general you'd think! We digress... #twitjc -8:28 PM silv24 I think as an intervention I can't see early palliative care involvement being bad, palliative care doesn't always = end of life #twitjc -8:29 PM iamdoctord @silv24 the divergence in survival curves at about 10 months suggests that 'intervention' has had a positive effect, as per @silv24 #twitjc -8:30 PM silv24 The only appropriate measure of a study of this kind is QOL - just depends which measure you use to quantify that #twitjc -8:30 PM fidouglas Can palliative care ever be a bad thing? How might it be use inappropriately? #twitjc -8:31 PM drgandalf52 @silv24 true but from what i read the Fact-L a reasonable method to use #twitjc -8:31 PM silv24 Did find it interesting that there was a letter saying that the FACT-L score wasn't clinically relevant #twitjc -8:31 PM PaedsSHO Early palliative care wasn't in place of standard care though was it? Surely an improved QoL is to be expected. #twitjc -8:31 PM silv24 Highlights that stastistically significant does always equal clinical relevance #twitjc -8:32 PM silv24 Ah, that should have said doesn't - stupid iPhone!! #twitjc -8:32 PM GPL41 @fidouglas #twitjc the difficulty is in persuading managers to pay for it - you need evidence your specialist intervention is key, not cheap -8:33 PM silv24 Point I meant to make, stastically significant doesn't always equal a clinically relevant result #twitjc -8:33 PM GPL41 @fidouglas #twitjc er social support etc. -8:33 PM crashmatt @GPL41 True, important point. Money is very tight, and getting additional spending without a survival increase is a difficult sell. #twitjc -8:35 PM iamdoctord The 'intervention' group received less aggressive chemotherapy, does the mortality rate in control group reflect iatrogenic effects? #twitjc -8:35 PM twitjournalclub A survivial advantage was shown amongst those patients in the early palliative care group over those on standard treatment alone. #twitjc -8:35 PM twitjournalclub Point 3 - What are the possible mechanisms behind this survival advantage? #twitjc -8:36 PM PaedsSHO @iamdoctord Could well do. That was my interpretation. #twitjc -8:36 PM mtvpaul Missed the start of #twitjc, but will be reading everything back! -8:36 PM drgandalf52 refer to earlier comment re earlier palliative care may mean earlier use steroids, increased appetite, better outcomes?? #twitjc -8:37 PM dsdarbyshire #twitjc the very stretched nature of palliative care perhaps makes implementation desirable but unfeasible -8:37 PM iamdoctord Chemotherapy could be complicated by infection etc, all a heavy burden on someone already having metastatic disease #conjecture #twitjc -8:37 PM silv24 @drgandalf52 I think we underuse steroids for that purpose - can be brilliant & have a huge impact #TwitJC -8:38 PM

PaedsSHO Survival advantage may be due to iatrogenic causes; neutropenic sepsis due to chemo etc. #twitjc -8:38 PM GPL41 @twitjournalclub #twitjc Non-specific psychological/support effects (spot the shrink!) -8:38 PM drgandalf52 @silv24 true but also think needs to be some work on GI bleeds in palliative care with aggressive steroid use before adopted.... #twitjc -8:39 PM dsdarbyshire #twitjc i think the iatrogenic effects are vitally important in this -8:39 PM silv24 @scottishphil83: @silv24 well said. palliative care =/= terminal care. #twitjc -8:39 PM fidouglas @GPL41 Remember being told by an oncologist that a patient's attitude had quite a large effect on their life expectancy. #twitjc -8:40 PM iamdoctord Note that median duration in hospice care was greater too for 'intervention' group, accessibility to these resources is key also. #twitjc -8:41 PM fidouglas @GPL41 Presumably, then, anything which helps to life mood has the potential to affect survival times...? #twitjc -8:41 PM tobyhillman @fidouglas when there is a clear case for intervention, but treating docs didn't notice. This does happen... #Twitjc -8:41 PM silv24 @drgandalf52 doesn't need to be aggressive but in patients with terminal ca the benefits can be huge & often get removed quickly #twitjc -8:41 PM silv24 RT @iamdoctord: Note that median duration in hospice care was greater too for 'intervention' group, accessibility to these resources is key also. #twitjc -8:42 PM GPL41 @fidouglas #twitjc I suspect psychological support/input is potentially quite valuable/effective -8:42 PM Albajuly @fidouglas @gpl41 Patient's attitude undoubtedly has an effect in my opinion. We used to talk about 'turning their face to the wall' #twitjc -8:42 PM silv24 Have to admit that this week I am horribly biased, huge supporter of early and good palliative care #Twitjc -8:43 PM iamdoctord RT @Albajuly: Patients attitude undoubtedly has an effect in my opinion. We used to talk about 'turning their face to the wall' #twitjc -8:43 PM drgandalf52 @silv24 fairpoint, but still feel some work needed, seen few anecdotal cases of punt with steroids lead 2 side effects and bleeds #twitjc -8:43 PM crashmatt @silv24 I should think that most people are, only question is how to best define "good" #Twitjc -8:44 PM twitjournalclub The final point for this week's discussion... #twitjc -8:45 PM twitjournalclub How can the results of this study be used to guide treatment in other cancers, including those which may be curable? #twitjc -8:45 PM iamdoctord @drgandalf52 @silv24 steroids only comprise a facet of palliative care, need to holistically examine psycho/bio/social model #twitjc -8:45 PM IanatPHP MT @fidouglas There's a literature on measures like Locus of Control & outcomes for LTCs like diabetes. Apply to cancer? #twitjc -8:45 PM PaedsSHO Early palliative care is probably beneficial in a lot of conditions (including non-malignant life-limiting conditions)... #twitjc -8:47 PM

silv24 @iamdoctord @drgandalf52 oh completely, I work at a hospital with a fantastic palliative care team - they are wonderful #twitjc -8:47 PM tobyhillman RT @iamdoctord: steroids only comprise a facet of palliative care, need to holistically examine psycho/bio/social model #Twitjc -8:47 PM PaedsSHO ...however I fear it will all come down to funding. #twitjc -8:47 PM silv24 This is where we need to get away from the idea that palliative care means end of life care - it really doesn't!!! #twitjc -8:48 PM iamdoctord Docs have a duty too provide all options of care at the initial consultation, and palliative care input is useful in curative dx too #twitjc -8:48 PM drgandalf52 does this paper support early discussion of palliative care regardless of outcomes, the 'just in case' talk #twitjc -8:48 PM IanatPHP Sorry, joining late. Any thoughts on economics of adding to care package (& therefore costs)? What extra benefit for the extra cost? #twitjc -8:48 PM dsdarbyshire #twitjc this paper raises the issue of the degree of seperation between oncology and palliative care both professionally and physically -8:48 PM AlfredLam @silv24 I def agree. BUT some Dr's need 2 realize palliative DNR/do not treat! Even cold meds are considered palliative! #twitjc -8:48 PM IanatPHP MT @iamdoctord: Docs have a duty too provide all options of care <At ANY cost? #twitjc -8:48 PM Jin_Shei All my patients are palliative - can live for over 20 years. Palliative is just treating symptoms, increase quality of life #twitjc -8:49 PM silv24 Good symptom control and the other forms of support palliative care offers are useful in a variety of things, not just cancer #twitjc -8:49 PM tobyhillman Palliative care is part of a spectrum, not a defined therapy. Techniques and approach can help many, with any chronic condition #Twitjc -8:49 PM AlfredLam RT @silv24: This is where we need to get away from the idea that palliative care means end of life care - it really doesn't!!! #twitjc -8:49 PM iamdoctord @drgandalf52 palliative care shouldn't be regarded as the 'just in case' or 'plan B' option, its an adjunct to other care... #twitjc -8:49 PM twitjournalclub MT @Jin_Shei: All my patients palliative - can live for over 20 yrs. Palliative is just treating symptoms, increase quality of life #twitjc -8:49 PM PaedsSHO With my paeds hat on, palliative care can last for years and years, e.g. patients with Duchenne's. #twitjc -8:51 PM iamdoctord @IanatPHP I think there is scope for shared decision making to be expanded in this field, and discussion of all care options useful. #twitjc -8:51 PM drgandalf52 @iamdoctord sorry 2 clarify meant in approach, seen many times the disc of palliative care avoided as patient well, then happens l8 #twitjc -8:51 PM IanatPHP RT @iamdoctord I think there is scope for shared decision making to be expanded in this field<Agree++. #twitjc -8:52 PM dsdarbyshire #twitjc do we need more palliative care docs or do we need docs better at palliative care? -8:52 PM PaedsSHO @dsdarbyshire Quite possibly both. #twitjc -8:53 PM

tobyhillman @iamdoctord @IanatPHP the difficulty often lies with docs feeling unskilled / unable to broach subject when pts relatively ok #Twitjc -8:53 PM iamdoctord The latter I think! RT @dsdarbyshire: do we need more palliative care docs or do we need docs better at palliative care? #twitjc -8:53 PM IanatPHP RT @dsdarbyshire: #twitjc do we need more palliative care docs or do we need docs better at palliative care?<IMNVHO, docs better at.. -8:53 PM tobyhillman Probably both, mosty the latter #Twitjc -8:53 PM silv24 @dsdarbyshire both!! Drs should be taught more about symptom control. I am lucky to have a great team to call for help #twitjc -8:54 PM drgandalf52 RT @dsdarbyshire: #twitjc do we need more palliative care docs or do we need docs better at palliative care? -8:54 PM drgandalf52 @dsdarbyshire both btw, esp latter with DNAR discussions #twitjc -8:55 PM dsdarbyshire #twitjc there is a top down aspect too. Hospital mortality rankings can be a real hindrance to caring -8:55 PM elaineleung Agree-mostly on the latter (palliative docs should be for training and complex cases). My rotation at the Beatson was invaluable #twitjc -8:56 PM rodedun I'll just butt in and say palliative care is generally not covered Well at med school #Twitjc 8:56 PM IanatPHP RT @tobyhillman: Probably both, mosty the latter #Twitjc<Have you read Bending the Cost Curve in Cancer Care? http://t.co/TybLI5J -8:56 PM PaedsSHO What resources are available for non-palliative care specialists? #twitjc -8:56 PM iamdoctord I concur with that RT @rodedun: palliative care is generally not covered well at med school. #twitjc -8:56 PM laikas @ctsinclair U might like 2 follow a twitter journal club session abt Early Palliative Care in Metastatic NSCLC http://t.co/gZ6GuGH #twitjc -8:57 PM PaedsSHO This: http://t.co/izC9j4w #twitjc -8:57 PM mtvpaul I'll also butt in to agree with @rodedun the value of palliative care definitely has not been overlooked at med school in my exp. #twitjc -8:57 PM IanatPHP RT @rodedun: Palliative care is generally not covered Well at med school #Twitjc< I had to wait until SHO job in hospice. 28 years ago. -8:57 PM PaedsSHO was launched for paeds this week, very useful! #twitjc -8:57 PM Trisha_the_doc @PaedsSHO And with the elderly #twitjc -8:58 PM Trisha_the_doc RT @twitjournalclub: MT @Jin_Shei: All my patients palliative - can live for over 20 yrs. Palliative is just treating symptoms, increase quality of life #twitjc -8:58 PM silv24 @PaedsSHO we have a specialist palliative care network in our area avaliable 24/7 - they are fantastic & have used them alot!! #twitjc -8:58 PM iamdoctord I think for other conditions e.g. CKD, COPD, CCF patient education early is invaluable and can comprise palliative care in it... #twitjc -8:58 PM Trisha_the_doc RT @silv24: Good symptom control and the other forms of support palliative care offers are useful in a variety of things, not just cancer #twitjc -8:58 PM

twitjournalclub Thank you all for participating in such an interesting discussion of a fascinating paper #twitjc -8:59 PM GPL41 #twitjc Big problem with this paper is we don't know if any beneficial effects come from Drs or specialists, or non-specific effects. -8:59 PM GPL41 #twitjc They could have controlled for the non-specific effects, but didn't seem to sadly! -8:59 PM twitjournalclub As always a transcript will be published on www.twitjc.com and a summary will also be posted (probably after MRCP part one...sorry!) #twitjc -8:59 PM tobyhillman @iamdoctord patient education important, lots of big pt charities avoid subject too. #Twitjc -9:00 PM mtvpaul Apologies for last tweet; misread a previous one. Must DISAGREE with @rodedun; palliative care is covered VERY well from my exp. #twitjc -9:00 PM twitjournalclub Please feel free to continue the discussion or add any further thoughts to the website - your feedback is invaluable #twitjc -9:00 PM elaineleung Good luck with exam #twitjc -9:00 PM twitjournalclub Once again thank you and have a lovely rest of Sunday evening #twitjc -9:01 PM