English - the European Oncology Nursing Society

Patient Diary Project receives 2008 EPE AwardAn interviewEONS newsteamThe recipients of the EPE award 2008 are Mrs. Catherine Oakleyand Mrs. Jo Johnson for their project ‘Patient Oral ChemotherapyDiary’. The diary was developed to provide a robust generic methodof supporting cancer patients and their carers, to manage oralchemotherapy treatment.The Excellence in Patient Education (EPE) Award was launched in2005 with the aim of honouring individual nurses or organisationsthat have consistently excelled at enlightening cancer patients abouttheir disease and its treatments. EONS believes that this Award willencourage creative and cutting-edge approaches to the developmentof patient education materials.In an interview with Jan Foubert, the winners of the 2008 EPE Awardprovide insight into the background, development, and future of theirpatient education project.Q: At a time when so many patient diaries are provided in all kindsof written form including on the internet and on CD, what led you toconsider producing this kind of format for your patients?A: There are many diaries currently in circulation but they arepredominantly orientated to one brand or method of administrationof oral chemotherapy. We reviewed a large number of diaries duringthe initial stages of designing our diary, and were not able to identifya generic diary which was grounded in research or completelypatient-driven. These elements were both considered essential infacilitating an outcome which could be used across tumour types andbe considered as evidence based.We have considered all modes of delivery. However, a significantproportion of the patient population receiving oral chemotherapy stilldo not have regular access to a computer or feel confident using one.Some of the patients who were interviewed as part of the researchcommunicated that although they had been given both the electronicand paper versions of previous diaries, they favoured the paperversion. This was due to the fact that they were more confidentmanaging this format and that they could carry it with them at alltimes. We would be very keen to develop this diary via a hand heldcomputer device. A further step could be provision of a computeriseddiary to enable pharmacy staff to complete dose scheduling ofmedications electronically and print this information for patients.Q: Is this diary user friendly? How has it been evaluated and used byboth patients and nurses? What are the major key issues and concernssurrounding the care of patients undergoing oral chemotherapy?A: This is a newly developed diary which has recently beenimplemented. It was developed in consultation with patients whotold us what they would like to have included. The diary provides aneducation focus as it provides key information related to self carein terms of managing treatment administration and action to betaken to minimise toxicities. The diary is being used in one healthservice trust within the South West London Cancer Network with aview to extend use to other constituent trusts. At the host trust theindividual patient scheduling regimen is added to the diary by thepharmacy. The diary and chemotherapy tablets are dispensed to thechemotherapy nurse. Patients then have a separate appointmentwith the nurse who provides education including use of the diary.Only when the nurse is confident that the patient can manage thetreatment is this handed over. The session also includes a check listwhich prompts the nurse to educate the patient, assess supportivecare and to ask questions designed to assess a patient’s ability tomanage their oral chemotherapy.The diary has been evaluated with patients through research carriedout by Jo Johnson. This study demonstrated that patients found thediary to be a useful aid to managing their treatment. The schedulingpart of the diary provided a useful prompt to remind patients whento take their tablets. Patients also like to tick doses off when takento help prevent incorrect scheduling (Oakley, Plant and Bloomfield,2006). Participants particularly appreciated the “traffic light system”which alerts them to which symptoms should be reported promptly.It is out intention to role out the diary across two cancer networks forsix months. At this time we will carry out separate focus groups withpatients and staff who are familiar with using the diary.We feel that there are several major key issues and concerns forpatients prescribed oral chemotherapy. Firstly, there is often anunstructured approach to oral chemotherapy services with a lack ofassessment, education, monitoring and support. Patients and carersseem to feel the responsibility of managing their treatment alonewhich can be and overwhelming (Oakley, Plant and Bloomfield, 2006).Patients are not usually able to assess when to interrupt treatmentand nurses don’t generally provide proactive monitoring and supportservices. Anecdotal accounts suggest that patients prescribed oralchemotherapy often don’t phone the hospital when toxicities occur.Postulated reasons for this include patients are not knowing able torecognize severe symptoms and patients deny that side effects willoccur (Oakley, Plant and Bloomfield, 2006) and patients do not wantto interrupt treatment which they urgently want to take to treat thecancer (Chau et al, 2004).Q: In the application you refer to a study (Johnson 2008) which isawaiting publication, can you explain more?The study quoted is part of a Master’s degree which was completedin April 2008. This study is now being formally written up forpublication (Autumn 2008). The results of this study will also be usedin conjunction with the results of the study by Oakley (2005), to allowpublication of an in depth overview of the entire research. An articleproviding a summary of the programme and a pictorial overview ofthe diary has just been published in Cancer Nursing Practice (Oakley,Johnson and Deeprose 2008).Q: For which kind of patients is this diary intended?A: The intention is to use the diary for patients receiving anti-canceroral chemotherapy treatment and the diary has been designed toaccommodate all current oral chemotherapy regimes. Followingevaluation of the diary within colorectal cancer and haematologicalmalignancies, we have made adaptions to include both weekly and28 day cycles. As most haematology regimens run over 28 days,patients within the study struggled to use the weekly equivalent.Patients who have reviewed the diary following this amendmentreport that the instructions on the first page provide a clearexplanation of how to use the two different cycles.Q: How many copies of the diary have been distributed so far?A: 100 diaries were printed (2nd version) and used as part of theresearch process. This diary is now the 4th version, with changes- newsletter fall 200810