Abstracts highlighted two main problems with MYMOP. The structure of MYMOP did not fit with the wide range of physical and psychosocial concerns that were nominated by participants, and many important aspects of care were only elicited in free-text answers to open questions. A multidisciplinary research group utilised the experience and results of this pilot to develop a new questionnaire called MYCaW. MYCaW is an individualised questionnaire that requires patients to nominate, and score on a sevenpoint scale, ‘one or two concerns or problems which you would most like us to help you with’. They also score their general feeling of wellbeing. The MYCAW follow-up questionnaire also includes the question ‘Reflecting on your time with this Centre, what were the most important aspects for you?’ MYCaW is now being used routinely in several cancer support centres. At The Cavendish Centre in 2003, 778 consecutive patients completed MYCaW at their first assessment, 345 returned for follow-up, 254 completed MYCaW on two occasions, and the mean (S.D.) change in score for the first concern was 2.9 (1.63). The 232 answers to the open question provide a rich description of the value of such aspects as relationships, support, hope, and regaining control and coping skills. This iterative process of development appears to have produced a patientcentred tool that is valid for this setting, acceptable, feasible and responsive to change. Funding is being sought for a more formal validation study that will use quantitative and qualitative methods to evaluate the routine use of MYCaW in several centres, and compare and contrast MYCaW to other commonly used measurement tools. doi: 10.1016/j.ctim.2004.07.012
Acupuncture Jacqueline Filshie Department of Anaesthesia, Institute of Cancer Research, Royal Marsden Hospital, Sutton SM2 5PT, UK Acupuncture, the ancient Chinese art of healing has been used for thousands of years and involves the insertion of fine needles into strategically chosen points for disease prevention, treatment or amelioration of symptoms. There is now good evidence for many of the neurophysiological actions of acupuncture, which include release of enkephalins, -endorphins, dynorphins and the up regulation of endogenous opioid gene production. Serotonin and noradrenalin release contribute to descending pain inhibitory pathways. Oxytocin release, which is anxiolytic, and endogenous steroid release also contribute to the analgesic effects. There are now evidence based systematic reviews
167 which show the efficacy of acupuncture for experimental pain, dental pain, headache, fibromyalgia, osteoarthritis of the knee and nausea and vomiting, though rather mixed for back pain, stroke and asthma and sadly negative for weight loss and smoking cessation. Acupuncture over recent years has developed an increased evidence base for pain and symptom control in cancer patients with evidence slowly accumulating for acute and chronic pain, dyspnoea, nausea, xerostomia, and vascular insufficiency to name but a few symptoms. Approximately one third of patients have chronic pain following surgery for breast cancer and half following reconstructive surgery. This has a profound deleterious effect on quality of life in these patients and can prevent close contact with children and partners. Acupuncture in preliminary studies has been shown to decrease pain, distress, depression and interference with lifestyle following breast surgery. We are now using acupuncture needling plus semi-permanent studs in preliminary work pre-, per- and postoperatively in an attempt to try and reduce the acute to chronic pain progression after this surgery. The use of indwelling studs for advanced cancer related dyspnoea is now in common use, as are ‘do it yourself’ or ‘DIY’ ‘one off’ needling or ‘DIY’ semi-permanent studs for long-term treatment of hot flushes for patients suffering from excessive hot flushes and night sweats following hormone manipulation treatment for breast cancer and prostate cancer in particular. The clinical areas described above, would benefit from further formal research as a matter of some urgency. Recent large scale prospective studies on the safety of acupuncture have shown extremely low levels of side effects in the general population. However, patients with cancer are a more vulnerable population, often with rapidly changing clinical symptoms and signs and acupuncture treatment is more complex in such patients. Though the safety aspects of treatment have been reviewed, a similar large scale prospective multicentre study on side effects would be desirable. Numerous factors still limit acupuncture research in cancer patients. Patient recruitment is known to be poor in palliative care studies, with high attrition rates during studies, some patients suffer from ‘trial fatigue’ or may already be involved in an incompatible study or some may be unable to complete questionnaires. A ‘Catch 22’ situation often arises with funding being denied without a named researcher but prospective researchers may not express an interest in performing research without funding streams in place. Busy clinicians may not have sufficient time available or the requisite stamina to write detailed grant ap-
168 plications and the stamina to persist if they fail to get funding. There may be a dearth of suitable/available researchers, as the career structure is less well defined in complementary medical care than for orthodox care. A further factor may be that some degree of tension appears to be developing between service provision and clinical research, which may further compromise clinical research. Despite these, real progress has been made in refining trial methodology in acupuncture studies over recent years and it is hoped that the future is brighter for prospective researchers who will hopefully answer some of the research questions in this important clinical field. doi: 10.1016/j.ctim.2004.07.013
A model for strategic planning at the national level—–the UK National Cancer Research Institute experience Liam O’Toole National Cancer Research Institute, UK E-mail address:
[email protected]. The National Cancer Research Institute (NCRI) is a partnership of the 19 largest UK cancer research funding organisations from the Government, charity sectors and industry. The role of the NCRI is to coordinate a national strategic approach to funding cancer research in the UK. The main benefit of the NCRI is providing an independent forum to tackle national issues that could not be undertaken by an individual organisation. In October 2002, the NCRI published a strategic analysis of cancer research that provided for the first time an accurate overview of cancer research activities in the UK by the NCRI Partner organisations. The report highlighted prevention and supportive and palliative care as areas where the combined UK investment appeared to be relatively low, and where a coordinated national approach between funding organisations was required. Two Strategic Planning Groups were established to bring together NCRI Partners to review in detail research activity in prevention and supportive and palliative care, and to seek input and advice from experts and stakeholders in order to address research barriers and identify opportunities in these areas. During these meetings, presentations from a number of UK cancer charities highlighted the need for evidence on complementary therapies and
Abstracts the challenges associated with generating this evidence. As a result the NCRI is establishing a Clinical Studies Development Group (administered by the National Cancer Research Network Co-ordinating Centre) to support researchers in generating high quality proposals for clinical trials and other well designed studies. This is an ideal time to develop complementary therapy research. There is a new culture of dialogue between the major cancer research funders and new under-pinning infrastructure in the form of the NCRN. All the NCRI partners recognise the challenges but have voiced their willingness to fund high quality research in this area. The establishment of the Complementary Therapy Clinical Studies Development Group is a key step in the right direction. doi: 10.1016/j.ctim.2004.07.014
NCRI Complementary Therapies Clinical Studies Development Group Susie Wilkinson Royal Free & University College Medical School, Department of Mental Health Sciences, Marie Curie Palliative Care Research & Development Unit, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK Complementary therapies are used alongside orthodox medicine with the aim of improving patient’s quality of life. Evidence suggests 25—35% of patients with cancer use complementary therapies. Aromatherapy massage and reflexology are the two most commonly used therapies in cancer care in the UK but to date there is very little evidence of their efficacy (Fellows et al., 2003). Against this background the Complementary Cancer Care Charities Partnership Group (Marie Curie Cancer Care, Breakthrough Breast Cancer, Bristol Cancer Help Centre, Foundation for Integrated Health and Macmillan Cancer Relief) submitted a proposal to the UK National Cancer Research Institute (NCRI) to establish a clinical studies development group to increase research activity in this area. This was accepted. The appointment of the Chair through open competition was undertaken. An expert group is currently being established from a wide range of disciplines. The remit of the group is to: • Review complementary therapy research • Establish a research portfolio • Propose rigorously designed studies