Available online at www.sciencedirect.com European Journal of Integrative Medicine 3 (2011) e105–e116 Abstracts from the CAMSTRAND Conference 2011, Southampton, UK Involving patients in designing research into using acupunc- ture and moxibustion in the management of breast cancer related lymphoedema Beverley de Valois * , Teresa Young, E. Melsome Lynda Jackson Macmillan Centre, United Kingdom Background: The National Institute of Health Research (NIHR) encourages active involvement of patients and public in health care research [1]. This is to ensure that research focuses on what is important to service users and is relevant and acceptable to them. We used patient involvement to design an exploratory study into using acupuncture and moxibustion (acu/moxa) to promote wellbeing and improve quality of life for breast and head and neck cancer patients with secondary lymphoedema [2]. Our objective is continue to use patient involvement in design- ing the next step, a pilot pragmatic randomised controlled trial to further investigate the potential for using acu/moxa as an adjunct to usual care for lymphoedema in breast cancer survivors. Objectives: To gain insight in how best to continue to use patient participation in designing the randomised controlled trial. Methods: In our exploratory study, we used focus groups to explore what patients and their healthcare professionals might want from an acupuncture research study. Eight focus groups were conducted during the spring of 2008 with breast cancer (n = 23) and head and neck cancer (n = 8) patients and their clinicians (n = 8). Participants discussed the acceptability of acu/moxa and identified troublesome symptoms for which they would like treatment. They identified facilitating features and potential obstacles of an acupuncture clinic. Results: Participants agreed that acu/moxa was an accept- able adjunct to usual care for lymphoedema, if needling was avoided in the affected area (including the torso quadrant on the affected side for breast cancer participants). Diverse and individ- ual symptom clusters resulted in an individualised, rather than a standardised, protocol for acu/moxa treatment. Participants specified preferences for treatment by the same practitioner, flexible appointment times, and “time off” to accommodate per- sonal events. Patients and clinicians’ opinions about duration of treatment differed. This led us to design an approach that offered both short and longer-term treatment options, to test the duration of treatment and the acceptability of longer-term treatment. Follow-up focus groups with participants of the clin- ical phase confirmed that the study was well conducted, that acupuncture treatment was acceptable and beneficial, and they identified issues with the questionnaires used [3]. Discussion: Patient and clinician inputs actively shaped the design of the clinical phase of the initial exploratory study, help- ing to ensure it was acceptable and relevant to their requirements. This helped to facilitate their compliance with the study proto- cols, which we designed to take account of what was important to them. Our aim is to continue to use a high level of patient involvement in the design of the next phase of our research. We are seeking input on how best to do this. INVOLVE advise planning sufficient time and resources to support patient involve- ment. How can we realistically incorporate patient involvement into a project plan given ethical and financial constraints prior to the award of any funding? In our previous study, we had funding and ethics approval for patient involvement in the early stages. However, we did not foresee that we would be required to submit a second ethics application once we had the patient-informed design. This affected the project schedule and resources. We liked the design that evolved which tested duration of treatment, but this was unforeseen in our grant application and had a “knock on” effect on resources and timing. How can we anticipate and plan for the unknowns that may arise from patient involvement? Many of our previous participants are keen to take part in shaping our next study. How can we best harness this very valu- able resource when we have limited funding and limited ethical approval? References [1] INVOLVE. INVOLVE: promoting public involvement in NHS, public health and social care research [online]; 2006. Available at: http://www.invo.org.uk. [2] de Valois B, Young T, Melsome E. Changing perceptions: using acupuncture in the management of lymphoedema. J Acupuncture Assoc Chart Physiother 2011;(Spring):63–6. [3] de Valois B. Using acupuncture in the management of lymphoedema. Lym- phLine: Newslett Lymphoedema Support Netw 2011;(Spring):4–5. doi:10.1016/j.eujim.2011.04.002 1876-3820/$ – see front matter doi:10.1016/j.eujim.2011.04.001