Microsoft word - palliative care csg annual report el changed.doc

NCRI Palliative Care Clinical Studies Group 2006-7
The remit of the Group is in line with the existing Clinical Studies Groups and the primary aimis to develop a portfolio of national collaborative studies, which are clinically relevant andlikely to have an impact on day-to-day practice. The full committee is concerned withdeveloping a strategy for the Group and identifying priorities for palliative care research.
The development of protocols has been devolved to subgroups where the detaileddiscussion and review of study proposals takes place.
The Chair was re-appointed in May 2006. Professor Chris Todd left the Group and Dr Julia
Riley joined the Group in June 2006. A number of existing members successfully reapplied to
the Group.
Just one of the ‘original’ Subgroups is still working; Pain. Health Services Research was
dissolved, those skills being co-opted on to other groups as needed. The Pain group has met
on several occasions during the past year, in addition to the twice-yearly meetings of the
main Group. Two newer Subgroups, Cachexia and Palliative Care in a Primary Care Setting
were set up in April and December 2005 respectively, and the newest, the Breathlessness
Subgroup early Summer 2006.
Progress Review
The progress review in January 2006 was in the main satisfactory, but flagged up some
important thoughts for the future. These included the failure of the Health Services Research
(HSR) Subgroup to develop any studies to be taken forward, and the need to broaden the
palliative care portfolio. “It is particularly important that studies in the important area of health
service research are rapidly developed. Additionally the Group could consider developing
ethics studies and work with other CS(D)Gs to develop joint studies on, for example,
complementary therapies or spirituality.”
As a result of the review the title of the Clinical Studies Development Group was changed,
dropping the word development. This change was really an acknowledgement of the
achievements of the Chairs of the Pain and Prognosis Subgroups in developing their ideas
and taking them through successfully to the funding stage. The progress of the Pain
Subgroup continued as the portfolio shows, and the prognosis study is ongoing. Cachexia
have produced and submitted a number of proposals, and the Breathlessness Subgoup are
pleasingly active, with a submission
in June 2007 to CRUK of a study titled “Phase II feasibility study of an RCT of a Breathlessness Intervention Service (BIS) for patients withcancer versus standard care”.
More problematic was the question of how the Group should handle the sharp criticism ofHealth Services Research. At the main meeting of the PCCSDG in March 2006 the decisionwas taken to dissolve the HSR Subgroup pro tem, and to ask the chair of the disbandedsubgroup to write a new strategy document and if accepted then a new committee would beformed to take forward that work. No document was forthcoming and the HSR group wasformally dissolved at the November 2006 CSG.
The Chair attended the June 2007 Complementary Therapies Group Strategy Meeting in anadvisory capacity.
Portfolio and accrual
There are currently 4 open trials in the portfolio and 2 in set up, with others on the way. A
summary of the open and set-up stage trials is given in Table 1 below.
70 patients were accrued to palliative care studies in 2006-07, the same as the previous
year, representing 0.3% of total UK accrual.
Studies in development
A number of studies are in development including a study of hydrox-methyl butyrate and
eicosapentaenoic acid in cancer cachexia, and a randomised double-blinded controlled
parallel trial of s-ketamine, racemic ketamine and placebo in conjunction with best pain
management in nueropathic pain in cancer patients.
The strategy for the Group may be summarised as:
 Developing a large study which makes full use of NCRN resources and which clearly demonstrates the added benefit of being part of NCRI  The publication of results from a national study in a high quality journal  Fully integrating palliative care research into mainstream oncology research (palliative care outcomes built into therapeutic studies)  Agreeing and using common outcome measures in studies  A better understanding of how sponsored services can have a high positive output on In addition there is a need to clarify the relationship between the Group and the two SUPACCollaboratives, to ease communication and prevent unnecessary competition between theCSG and the Collaboratives. The necessary cross-representation has been organised.
These for the reporting year can be found in Appendix 1.
Table 1. Palliative Care CSG Portfolio
preference trial of a care planningdiscussion resistance in patients with advancedcancer - phase 1 (observational Study) resistance in patients with advancedcancer - phase II (interventional Study).
clinicians experiences and views ofpalliative chemotherapy.
proposal for phase one of a two phasestudy blind controlled trial to investigate the supplementation Prosure™ containing the omega-3 fatty acid, eicosapentaenoic acid or EPA to stabilise weight loss andpromote weight gain in patients withspecific incurable solid tumour cancer anda history of on going weight loss(cachexia) perceptions about the quality of end-of-lifecare (50 patient, pre-testing study) patients: a pilot study to determine theoptimum dosage regime strategies in older people with cancer.
measure for use in cancer cachexia trials - stimulation in the management of cancerbone pain An open, randomised, parallel group study in patients with cancer pain, to compare a oxycodone) with conventionalmanagement using a three-step approach.
NCRI-Palliative Care CSG 2006/07 Publications and Abstracts Report Kelly L, White S and Stone P. The B12 / CRP index (BCI) as a simple prognostic indicator inpatients with advanced cancer: a confirmatory study. Annals of Oncology (in press).
Stone PC and Lund S, Predicting Prognosis in patients with advanced cancer. Annals of
2007; 18: 971 – 976
Stone P. Fatigue in advanced cancer – Is it inevitable? Journal of Royal College ofPhysicians of Edinburgh 2007 (Conference proceedings)(in press) Fernandes RJ, Stone P, Andrews PA, Morgan RE and Sharma S. Fatigue, Sleep
Disturbance and Circadian Rhythm in Cancer Inpatients – A Controlled Comparison. Journal
of Pain and Symptom Management
2006; 32: 245 – 254
Murphy H, Alexander S and Stone P. Investigation of diagnostic criteria for cancer-related
fatigue syndrome in patients with advanced cancer: a feasibility study. Palliative Medicine
2006; 20: 413 – 418
Fernandes RJ, Stone P, Andrews PA, Morgan RE and Sharma S. Fatigue, Sleep
Disturbance and Circadian Rhythm in Cancer Inpatients – A Controlled Comparison
(Research abstract). Palliative Medicine 2006; 20(2): 142.
Murphy H, Alexander S and Stone P. Investigation of diagnostic criteria for cancer-related
fatigue syndrome in patients with advanced cancer: a feasibility study (Research abstract).
Palliative Medicine 2006; 20(2): 144-145
Murray SA, Kendall M , Grant E, Barclay S, Sheikh A. Patterns of social, psychological andspiritual decline towards the end of life in lung cancer and heart failure. JPSM 2007, InPress.
Kendall M, Harris FM, Boyd K, Sheikh A, Murray SA, Brown D, Mallinson I, Kearney N,Worth A. Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study. BMJ, doi:10.1136/bmj.39097.582639.55 (published28 February 2007).
Kendall M, Boyd K, Campbell C, Cormie P, Fife S, Thomas K, Weller D, Murray SA. How do
people with cancer wish to be cared for in primary care? Serial discussion groups of patients
and carers. Family Practice 2006; 23:644-650
Murray S, Sheikh A. Serial interviews for patients with progressive diseases. Lancet
2006; 368: 901-902.
Murray S, Sheikh A, Thomas K. Advanced care planning in primary care.
2006;333: 868-869
Murray SA, Mitchell GK, Burge F, Barnard A, Nowels D, Charlton R. It’s time to
develop primary care services for dying. Journal of Palliative Care 2006;22



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