The Science Committee advises the Executive Committee of the APM on the scientific basis of palliative medicine, including responding to consultations and commenting on scientific documents for which APM endorsement is being sought. The Committee aims to develop a greater scientific profile for the specialty of palliative medicine, including setting priorities to seek new evidence, aiding in the development of evidence based guidelines and protocols for palliative medical interventions and helping to foster, facilitate and coordinate the development of an ethical research culture in palliative medicine and with other specialties.
|Dr Jason Boland||Chair|
|Prof Paddy Stone|
|Dr Elaine Boland|
|Dr Katherine Webber|
|Dr Ollie Minton|
|Dr Paul Perkins|
|Dr Helen McGee|
|Dr Simon Etkind||Trainee Representative|
|Frank Wang||Junior Representative|
BMJ Supportive & Palliative Care shortcuts
Please click on the link below to view resources for trainees wanting to carry out research
RESEARCH GOVERNANCE: A Guide for Hospices
Twycross Research Prize 2014
Winner: Dr Amara Nwosu
The assessment of hydration states in advanced cancer patients using novel technology: the evaluation of bioelectrical impedance vector analysis (BIVA) in the palliative care setting
Click here to see full research: Twycross Research Winning Entry 2014
Article(s) of the month
These articles have been picked for personal learning but also would be useful for a journal club discussion
Markus K. Schuler, MD, MSc, Leopold Hentschel, Dipl-Psych, Wadim Kisel, Michael Kramer, Dipl-Psych, Felicitas Lenz, BSc, Beate Hornemann, Dipl-Psych, Julia Hoffmann, Stephan Richter, MD, Gerhard Ehninger, MD, Martin Bornh€auser, MD, and Frank Kroschinsky, MD
Journal of Pain and Symptom Management January 2017; Vol. 53; No. 1; 57-66
This randomised controlled trial looked at the impact of a structured individual sports program on fatigue in patients with advanced cancer (undergoing curative and palliative treatments) over 12 and 24 weeks. They found no significant difference in general fatigue at 12 weeks but a significant reduction in mental fatigue both at 12 and at 24 weeks for the groups taught the exercise program and worsening of fatigue in the control group. There was a non significant advantage for the group that had twice weekly therapist supervision as well as the exercise program but as these patients had the worst baseline scores of fatigue this cannot be attributed to the supervision. Although their numbers are small and the study was not blinded, this study adds to the evidence for the advantages of physical therapy in improving fatigue in a heterogenous sample of patients, many of whom were having palliative treatment.
Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A systematic review
Ebony Lewis, Magnolia Cardona-Morrell, Kok Y Ong, Steven A Trankle and Ken Hillman
Palliative Medicine 2016, Vol 30(9), 807-824
This systematic review looked for evidence that the presence of Advance Care Documentation (ACD) enhanced clinician’s involvement in initiating End of Life (EOL) discussions and whether that engagement was perceived or measured as effective. 24 studies were included involving over 23,000 participants with most of the studies being qualitative in nature. The review only found one well designed cohort study that provided high level evidence of a statistical significant association indicating that the ACD prompted an EOLC discussion. The authors’ conclusion is that the evidence to date cannot provide an answer to the effectiveness of ACD on triggering conversations about EOL wishes despite most studies finding staff had a positive attitude to the use of ACD as instruments to improve communication.
Prepared by Helen McGee, on behalf of the APM Science committee
Authors: Lucy N Walker, St Catherine’s Hospice, Scarborough, UK. Lynne Russon, Sue Ryder Wheatfields Hospice, Leeds, UK
BMJ Supportive & Palliative Care
This interesting pair of papers gives an insight into the use of simulation in training for medical students and Palliarive Medicine trainees. It’s clear the training was valued and there are some tips on how to run such training.
Somatostatin Analogues Compared With Placebo and Other Pharmacologic Agents in the Management of Symptoms of Inoperable Malignant Bowel Obstruction: A Systematic Review
George P. Obita, MB, ChB, MPHCM, MSc, MFPH’Correspondence information about the author MB, ChB, MPHCM, MSc, MFPH George P. ObitaEmail the author MB, ChB, MPHCM, MSc, MFPH George P. Obita, Elaine G. Boland, MD, MRCP, PhD, David C. Currow, BMed, MPH, PhD, FRACP, FAHMS, Miriam J. Johnson, MBChB (Hons), FRCP, MD, Jason W. Boland, MB, BChir, FRCP, PhD
JPSM – Journal of Pain and Symptom Management
There’s been a lot of debate about the use of these drugs recently. This is a great starting point for those interested. The implications for future research section is worth reading for anyone who is thinking about doing any further work in the area.
Prepared by Paul Perkins, on behalf of the APM Science committee
A useful study examining why haematological patients die in hospital. While it reinforces the complex and uncertain trajectory of some of these conditions there is a distinction drawn between younger and older patients. There is also a patient expectation to be able to access hospital and on-going supportive treatment which community and hospice settings cannot match. The final theme is that it is not always practical to manage a death at home if complicated. It is probably worth sharing with your local haematologist as includes bereaved relatives views.
Effect of communication skills training on outcomes in critically ill patients with life-limiting illness referred for intensive care management: a before-and-after study
A brave attempt to do a communication skills intervention on the effects of ITU admissions. The study was in Australia but could equally apply to the UK. However the focus was on goals of care and the intervention with simulated patients around this. It is then not surprising the documentation related to this increased but overall admission rate and outcomes did not. The study focused on those admitted to the ICU and you are left wondering if the focus should be on preventing these admissions in the first instance. As a recent conference slide said “ one hour of difficult conversation can prevent two weeks of ITU admission and death”. There is increasing evidence of who is likely to benefit from admission and who won’t – the paper talks about disease specific trajectories to focus on.
The costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs: A systematic review of international evidence
This is a review attempting to quantify the CNS role. Unfortunately the methodology used for the papers does not allow a clear delineation of the role and cost effectiveness. I doubt this is a unique palliative care phenomenon. There is a clear recognition of the value added but a disappointing lack of evidence for business cases – although there is an impact on length of stay and re-admission rates which is maybe all that is needed.
What factors influence emergency department visits by patients with cancer at the end of life? Analysis of a 124,030 patient cohort
This is a reminder of patient factors previously identified for those who use acute services towards the end of their lives. There is more quantified data than usual as it looks at those who attended A&E at least twice. The findings are not unexpected – those of a lower socio-economic class and multi- morbidities are more likely to do so. Also patients with head and neck or lung cancer. This is a large cohort study & the data can be usefully used to target these groups locally through GSF meetings or the like.
Cancer Treatment Side Effects: A Meta-Analysis of the Relationship between Response Expectancies and Experience
This is an updated meta-analysis examining the relationship between perceived and experienced side effects of chemotherapy. This is poorly understood mechanism but may be relevant for patients undergoing palliative treatment and especially with newer immunotherapy. The conclusions suggest that it would be helpful to fag up potential toxicities and to measure their impact on treatment- something on which we can all agree especially when the aim of treatment is quality of life and symptom control.
Prepared by Ollie Minton, on behalf of the APM Science committee
This paper uses interviews with current and formerly homeless people, homelessness staff, and health and social care professionals to explore end of life care delivery for homeless people.
The findings highlight that homeless people often remain in hostels as health deteriorates, and sometimes for end of life care, due to a lack of alternatives. The authors conclude that person centred care is often lacking for this vulnerable group, and that improved training and in-reach into hostels may be beneficial.
Article Available at: http://journals.sagepub.com/doi/full/10.1177/0269216317717101
Salamanca-Balen N, Seymour J, Caswell G, et al. The costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs: A systematic review of international evidence. Palliative Medicine (2017): 0269216317711570.
There is evidence that clinical nurse specialists can improve quality of care and potentially improve costs, but this systematic review points out the great variation in the quality of evidence, and how the impact of nurse specialists is measured. More high quality studies are needed to pinpoint the settings and models of care in which nurse specialists may have the greatest impact.
Article available at: http://journals.sagepub.com/doi/full/10.1177/0269216317711570
Prepared by Simon Etkind, on behalf of the APM Science Committee
Mayland CR, Mulholland H, Gambles M, et al
How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?
BMJ Supportive & Palliative Care 2017;7:316-325.
This paper presents the results of a survey of bereaved relatives of patients who died in hospitals. Quite a few carers were not contacted for various sensible reasons. Of those who responded only 4% said that staff did not do enough to control the patient’s pain. Relatives’ ratings of communication were not so high. This paper might help those of us involved in training hospital staff.
George R, Prasoona TS, Kandasamy R, et al
Improving malodour management in advanced cancer: a 10-year retrospective study of topical, oral and maintenance metronidazole
BMJ Supportive & Palliative Care 2017;7:286-291.
Here’s some practical advice for the management of malodour and a great new ladder – the SNIFF ladder.
Does the EQ-5D capture the concerns measured by the Palliative care Outcome Scale? Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods
Mendwas D Dzingina1, Paul McCrone2, Irene J Higginson1
Palliative Medicine, vol. 31, 8: pp. 716-725.
It’s helpful when academics can guide us as to the best quality of life or health economic measures for studies. The EQ-5D may not be the best tool for measuring economic outcomes in palliative care research. The author’s question how appropriate economic analysis is in palliative care is and argue that further research is needed in this area.
Prepared by Paul Perkins, on behalf of the APM Science Committee
Palliative Care Screening and Assessment in the Emergency Department: A Systematic Review
George N, Phillips E, Zaurova M, Song C, Lamba S, Grudzen C.
J Pain Symptom Manage. 2016 Jan;51(1):108-119
This systematic review included 7 articles addressing palliative care interventions in the emergency department. The interventions assessed in all studies increased palliative care referral, but the study outcomes varied widely and six of the seven studies required additional staff to perform screening for palliative care needs in the emergency department. Standardization of palliative care screening in the emergency department is recommended.
Variations in specialist palliative care referrals: findings from a population-based patient cohort of acute myeloid leukaemia, diffuse large B-cell lymphoma and myeloma.
Howell DA, Wang HI, Roman E, Smith AG, Patmore R, Johnson MJ, Garry AC, Howard MR.
BMJ Support Palliat Care. 2015 Dec;5(5):496-502.
This cohort study collected information on patients with three haematological malignancies. Of the 323 included patients, 155 (48%) were referred to specialist palliative care, with patients living longer or having myeloma being more likely to be referred. People dying at home or hospice were more likely to have been referred to specialist palliative care services compared with those dying in hospital. The authors suggested further research to explore the reasons for specialist palliative care referral and non-referral, and differences in the preferred and actual place of death.
Elaine Boland, on behalf of the APM science committee
Michael J. McNeil, Arif H. Kamal, Jean S. Kutner, Christine S. Ritchie, Amy P. Abernethy
J Pain Symptom Manage. 2016;51(2):178–183
In a secondary data analysis of a multi-centre randomised trial, medication burden of 244 adults estimated to be in the last year of life taking a statin for primary cardiovascular disease prevention was evaluated. Patients took an average of 12 medications at enrolment and 11 medications at death or study termination. Antihypertensives, broncholytics/bronchodilators, laxatives, antidepressants, and gastric protection drugs were the most common classes of medications prescribed near the end of life.
Should we involve terminally ill patients in teaching medical students? A systematic review of patient’s views
Harris DG, Coles B, Willoughby HM.
BMJ Supportive & Palliative Care 2015;5:522–530.
A systematic review using narrative synthesis explored how terminally ill patients feel about being involved in undergraduate medical teaching. Seven studies with 269 patients (mostly hospice based) were included. Patients were generally in favour of being involved in teaching. Negative aspects included concerns about being physically examined; finding it tiring and feeling unable to decline.
Prepared by: Jason Boland, on behalf of the APM science committee
Firn J, Preston N and Walshe C
Palliat Med 2016; 30(3): 240-256
A systematic review using narrative synthesis explored collaboration between generalists in palliative care and specialist palliative care teams in hospital. Twenty-three studies were identified. Five themes were drawn from the literature.
Collaboration was seen as beneficial yet challenging. Communication between specialists and generalists, and clarification of the role of both were important in facilitating collaboration. An integrated approach between specialists and generalists seemed to enhance collaboration. The education provided by specialist teams was identified as a significant benefit of referring.
‘My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers
Mason B, Nanton V, Epiphaniou E et al.
BMJ Support Palliat Care 2016; 6(1): 60-65
A multi-centre interview-based study explored the experiences of care of patients with two or more advanced illnesses. Patients were identified as likely to be in the last year of life. A total of 87 interviews were carried out, at 8-12 week intervals, with a total of 37 patients and 17 carers. Interpretive analysis was used.
Two themes were identified: ‘experiences of care’ and ‘understanding’ (of their illnesses). Patients and carers described a progressive physical decline, with struggles in coping with multiple care systems and multiple, frequently-changing medications. Deterioration was often attributed to ‘getting old’ rather than becoming more unwell, and little evidence of future care planning was described.
Prepared by Richard Kitchen, on behalf of the APM Science Committee
Andrew Davies, FRCP, Gill Mundin, BSc (Hons), Joanna Vriens, MRCP, Kath Webber, PhD, Alison Buchanan, RGN and Melanie Waghorn, RGN
Journal of Pain and Symptom Management 2016 Vol. 51, No.3 538-545
Nine cancer patients with salivary gland hypofunction underwent a series of three pharmacokinetic studies with the sublingual fentanyl orally disintegrating tablet (Abstral). The data suggests that salivary gland hypofunction negatively affects the pharmacokinetics of sublingual fentanyl orally disintegrating tablets (longer Tmax, lower Cmax, a lower AUC-30 and a lower AUClast). The use of a saliva substitute (water) or a saliva stimulant (pilocarpine) were equally effective in terms of optimizing the absorption of the sublingual fentanyl orally disintegrating tablet although this study did not compare this with patients with normal salivary gland function. Given that salivary gland hypofunction is very common in palliative care patients the authors suggest that patients are advised to moisten the oral mucosa before dosing or be prescribed a salivary stimulant.
Methicillin-resistant Staphylococcus aureus: Prevalence, incidence, risk factors, and effects on survival of patients in a specialist palliative care unit: A prospective observational study.
Aoife Gleeson, Philip Larkin, Cathal Walsh and Niamh O’Sullivan
Palliative Medicine 2016, Vol 30(4) 374-381
Data were collected for consecutive patient admissions to a 16-bed specialist palliative care unit in Ireland over an 18 month period resulting in 609 admissions for 466 individual patients. Prevalence of MRSA colonization was 11.59% with a 1 week incidence of colonization of 1.2%. Risk factors included high Waterlow score, high palliative performance scale score, MRSA prior to admission, admission from hospital, presence of urinary catheter or PEG tube and poor dietary intake. MRSA was eradicated in 8.1% with 62.2% of MRSA patients dying before completion of the eradication protocol calling into question the value of the eradication protocol. The authors suggest that MRSA screening be best restricted to high risk patients. MRSA did not significantly impact on survival but was significantly associated with having infection episodes and length of stay
Prepared by Helen McGee, on behalf of the APM Science Committee
Bregje Thoonsen, Stefanie H M Gerritzen, Kris C P Vissers, Stans Verhagen, Chris van Weel, Marieke Groot and Yvonne Engels
– BMJ Supportive & Palliative Care
Training GPs to recognise palliative patients a RCT – a very helpful paper demonstrating the use of a training program for GPs ( in Holland) that had a longer lasting effect over 15 months to keep them aware of likely patients who would be suitable for the GSF equivalent in the UK
Yolanda WH Penders, Judith Rietjens, Gwenda Albers, Simone Croezen, Lieve Van den Block
– Palliative Medicine Journal
A study looking at the differences in out of pocket expenses in the last year of life – useful to compare across Europe – the UK does well as the NHS meets this but there are lots of informal and hidden costs which are made explicit and a reminder of the expenses incurred not simply health related
Marieke H.J. van den Beuken-van Everdingen, MD, PhD, Laura M.J. Hochstenbach, MSc, Bert E.A.J. Joosten, PhD, Vivianne C.G. Tjan-Heijnen, MD, PhD, Daisy J.A. Janssen, MD, PhD
– Journal of Pain and Symptom Management
An updated meta-analysis and review of cancer pain – does not add new knowledge but for educational purposes and training it is a useful reminder that it is still significantly under treated outside of the expert area – reaffirmed by recent voices data on lack of pain relief with patients dying at home
Prepared by Ollie Minton, on behalf of the APM Science Committee
A Mixed-Methods, Randomized, Controlled Feasibility Trial to Inform the Design of a Phase III Trial to Test the Effect of the Handheld Fan on Physical Activity and Carer Anxiety in Patients With Refractory Breathlessness
Miriam Johnson, Sara Booth, David C. Currow, Lawrence T. Lam, Jane L. Phillips
– JPSM 2016; 51:807-815
A multisite, international, parallel, nonblinded, mixed-methods randomised controlled trial where patients were randomised to breathlessness self-management/exercise advice +/- fan. 43 completed the study and interviews showed patients found fans useful. They conclude that a definitive, multisite trial is feasible BUT it’s not going to happen – ‘the value of information for changing practice or policy is unlikely to justify the expense of such a trial, given perceived benefits, the minimal costs, and an absence of harms demonstrated in this study.’
Lucy Selman, Vicky Robinson, Lara Klass, Shaheen Khan, Rob George, Kate Shepherd, Rachel Burman, Jonathan Koffman
– BMJ Support Palliat Care 2016;6:231-236
This is a before and after evaluation of a 2 day End of Life Care course for hospital and community staff – 236 staff completed the course over 2 years. Quantitative and qualitative results showed participants valued the course. Further research is planned to optimise the intervention and determine the optimum trial methodology to evaluate its impact on patient, family carer and staff outcomes and cost-effectiveness.
Prepared by Paul Perkins, on behalf of the APM Science Committee
A recent publication in BMJ Supportive and palliative care illustrates the potential value of routinely collected clinical data and shows how clinical services can engage in collaborative service improvement projects even if they do not necessarily have the infrastructure to participate in randomised controlled trials (Hatano et al. Pharmacovigilance in hospice/palliative care: the net immediate and short-term effects of dexamethasone for anorexia.
Palliative Medicine has recently published the abstracts of the 9th World Research Congress of the European Association for Palliative Care (doi:10.1177/0269216316646056). For those who were unable to attend the conference (and even those who were there but were unable to absorb all of the information that was presented), this provides a valuable resource. It is a valuable resource which documents the wide variety of research occurring across Europe. It is worth searching the abstract book for terms such as “randomised controlled trial” or “systematic review” in order to get a feel for how the quality of the evidence available to help inform our decision making is slowly growing.
Prepared by Paddy Stone, on behalf of the APM Science Committee
A secondary analysis looking at how patients’ define ‘acceptable’ pain intensity on a numerical rating scale.
Wendy H Oldenmenger1⇑ Carin CD van der Rijt1,2 Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands Wendy H Oldenmenger, Department of Medical Oncology, Erasmus MC Cancer Institute
From “Breakthrough” to “Episodic” Cancer Pain? A European Association for Palliative Care Research Network Expert Delphi Survey Toward a Common Terminology and Classification of Transient Cancer Pain Exacerbations.
A Delphi expert survey attempting to re-categorise and redefine breakthrough cancer pain
Løhre ET1, Klepstad P2, Bennett MI3, Brunelli C4, Caraceni A4, Fainsinger RL5, Knudsen AK6, Mercadante S7, Sjøgren P8, Kaasa S6; European Association for Palliative Care Research Network.
A letter responding to the above article questioning the terminology and definitions used
Andrew Davies, Andrew Dickman, Paul Farquhar-Smith, Katherine Webber, John Zeppetella
Journal Pain Symptom Manage DOI:http://dx.doi.org/10.1016/j.jpainsymman.2016.06.002
Prepared by Katherine Webber, on behalf of the APM Science Committee
Erica Witkamp, Mirjam Droger, Rien Janssens, Lia van Zuylen, and Agnes van der Heide. J Pain Symptom Manage 2016;52:235e242.
This is a secondary qualitative analysis of relatives’ comments and answers to 10 open questions on the quality of dying in a general university hospital in the Netherlands. 451 questionnaires were returned and analysed from 951 sent to relatives of deceased adult patients. If bereaved relatives feel acknowledged by the trust staff in their role as caregiver, representative, and close relative, be involved in decision making and be informed in a timely fashion, then they felt they were in a better position to represent the patient.
Katherine Bristowe, Steve Marshall and Richard Harding
Palliative Medicine 2016, Vol. 30(8) 730– 744
This systematic review evaluated the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans people who have lost a partner. There were 13 studies of 555 individuals. Loss of the primary relationship is a universal experience, regardless of sexual or gender identity. Additionally experiences around the time of death were often shaped by interactions with healthcare professionals, legal and financial issues, and HIV or AIDS. Social and familial support, and if their relationship was disclosed openly also influenced bereavement
Prepared by Elaine Boland, on behalf of the APM Science Committee
J Pain Symptom Manage. 2016 Oct 31
Diamond EL, Panageas KS, Dallara A, et al
This case-control study examined factors associated with acute hospital admission within one month of death in 385 patients with GBM. Nearly half were admitted within a month of death, mostly to manage neurologic decline. Of these, a third were admitted to ICU. In-hospital chaplaincy and being in a clinical trial, were associated with hospital admission within one month of death.
J Pain Symptom Manage. 2016 Sep 29.
Poulain P, Berleur MP, Lefki S et al
A multicentre randomized controlled trial was used to assess the effectiveness of stop-and-go and progressive methadone titration in patients with cancer pain who did not have adequate pain relief or side effects from strong opioids. Most patients had improvement in pain (≥2 point reduction on the visual scale and a pain score <5 for 2 consecutive days); this was maintained for the 56 day follow-up period; there was no difference between groups. In both groups, 84% had adverse events; respiratory depression occurred in 12-14%.
Prepared by Jason Boland, on behalf of the APM Science Committee