English - the European Oncology Nursing Society

made in response to patient feed back from the study and evaluationfrom health care professionals. We are currently in the process ofrolling out the diary across the South West London Cancer Network(SWLCN). In the interim, we have secured a print run for 300 copiesof the latest version, which will be used within St George’s Hospital,to continue the excellent model of care introduced to support the useof the diary.Q: What attempts have you made to evaluate use of the diary?This diary has been evaluated at every stage of its development. Theinitial versions were evaluated by primary, secondary and territorycare providers within the SWLCN. It was also evaluated by patients,both within the context of the Diary Development Group and theSWLCN Patient Partnership. The final versions have been evaluatedformally and informally within the units caring for these patients. Wewanted to find out the practicalities of using this diary and also valuedthe varied feedback from healthcare professionals. All feedback hasbeen examined, interpreted and used to shape the final version of thediary.Q: How have you changed the diary to reflect the comments made bypatients?A: The patients’ responses and comments to the diary have driventhis programme from the outset. We were able to work with anumber of patients who had recently undergone a course of oralchemotherapy, thus enabling us to gain a good insight into theproblems encountered.Q: Have any particular groups or minorities had problems using thematerials?A: The initial research study had to exclude patients who did nothave English as their first language for funding reasons. This was afeasibility study and was not attached to any external funding. It isnot possible to predict at this stage whether any particular groups orminorities would have problems using the diary and further researchis required to explore this.Q: What about minority groups? Have you thought about translating itinto other languages?A: We would like to evaluate the diary further before it is translatedinto other languages. These would reflect the ethnicity of our localpopulation.Q: Did you have support to produce the diary?A: Up to this point the diary has progressed and been producedthrough good will! Our graphic designer is a family member andhas worked on the design and creation of each version of the diaryfree of charge. The initial batch of printing was carried out free ofcharge through an independent company who wished to support theprogramme. The majority of the work for this programme has beendone in our own time.us to fully evaluate the model of care chosen to support the diarywhich we hope can be adopted by other providers to improve themanagement of oral chemotherapy patients.Q: How will you use the prize money from the EPE award?A: We are going to use the prize money to fund education. This willallow us to extend our existing skills and knowledge and to be able totake this work forward effectively.Q: What was the most valuable thing you learned from undertaking theproject?A: The most valuable lesson we learned was the importance ofpatient involvement. One of the most poignant moments of theprogramme occurred during a meeting of the Diary DevelopmentGroup. Following long discussions and healthy debate over thepossible contents of the diary, one patient spoke up and asked ‘Isthis diary going to be designed to meet your needs (the healthcareprofessionals) or ours?’ This patient completely refocused the groupand his words stayed with us throughout the diary’s developmentGrounding the development of the diary within the research processhas also been invaluable. It has provided us with a clear beginningand end point, thus allowing structured evaluation.Q: What advice would you give to others who might be thinking aboutdoing something similar?A: It is important to form a project group from the outset whichincludes both patients and representatives from all providers. A clear,structured project plan is essential and should include realistic timelines and deadlines for completion. This maintains the momentumand allows simple monitoring of all progress. Four versions ofthe diary were produced in total. All of these versions have beencommented on by the Diary Development Group, as well as beingsent out for wider consultation throughout the SWLCN.Q: Are there any other members of the production team that you wouldlike to thank?Yes, we would like to thank the Diary Development Group, inparticular the patients and staff who gave time to the project andsupported us through this long and at times stressful process. Weare also very grateful to the continued support from Mark Deeprose,our graphic designer. Without him we would not have been ableto transfer our vision and ideas into print. We also are indebted toKing’s College, London. We both completed our MSc studies thereand received a significant amount of additional support with the diaryfrom Dr. Emma Ream, our shared supervisor and role model. Andlast but not least, we extend thanks to our families for putting up withus!Q: This is a rather involved project. How long did it take to produce thediary?A: Three years.Q: Did you receive funding to conduct the project?A: The research study was not associated with any funding. Wemanaged the overall programme with minimal funds. Refreshmentsfor meetings and reimbursement for patient travel costs wereprovided by the South West London Cancer Network.Q: Do you have plans to develop the project further?We would like to formally evaluate the introduction of the 4th versioninto practice to enable us to roll it out more widely. This will allownewsletter fall 2008 -11