Design of information packages on cancer chemotherapy for patients/carers and General Practitioners

Abstract

Objectives. With the ultimate aims of increasing the knowledge and well-being of patients treated with chemotherapy and improving the communication of information on chemotherapy between the local on cology unit and General Practitioners (GPs), this project was undertaken with the following objec tives. I. Establish the need for written information on chemotherapy among patients receiving treatment at the Oncology Unit. II. Establish the wish of GPs to receive specifi cally designed information on chemotherapy, and to gain their opinion on the provision of such informa tion to both patients and their GPs. III. Design a prototype patient information pack age for oncology patients. IV. Design an information package on chemo therapy for GPs. V. Assess the response of patients, and Consul tant Oncologists and Hematologists to the informa tion packs. Patients and GPs. The patient information package was designed for use by Oncology and Hematology (various disease states) patients treated with chemotherapy within this institution. The pack age for GPs was sent to each GP practice in the institution catchment area. Methods. Objectives I and II were achieved by means of questionnaires designed specifically for pa tients and GPs, respectively. Objective III was achieved by collecting data on chemotherapy from tertiary sources and by reviewing both recent litera ture on patient information leaflet (PIL) design and other available PILs. Objective V was also achieved by means of questionnaire in addition to formal meetings with the hospital consultants. Design. An A5 (5 3/4 × 8¼ in) size patient infor mation booklet was designed containing general in formation on chemotherapy and its side effects. A specific set of information cards, one for each drug, was also prepared. Careful attention was paid to the presentation, style, and content, which were modified in accordance with the comments that patients pro vided to Questionnaire 2. The package for each GP practice comprises an A4 (8½ × 113/4 in) size white plastic ring binder containing a 4-page section giving general guidance and instructions on the treatment of the late side effects of chemotherapy, and a "data sheet" for each cytotoxic drug detailing the mode of action, precau tions, side effects, and special instructions. Results. The patient questionnaire (Question naire 1) indicated that currently only 12% of our oncology patients receive written information, and 40% (plus 24% nonresponders) could not identify any drugs in their chemotherapy regimen. The GP ques tionnaire (Questionnaire 3) indicated that 95% want to receive specially designed information on chemo therapy, and that all thought that patient care would benefit from a patient information booklet. The answers to Questionnaire 2 showed that the information booklets and cards have a high degree of patient acceptability. Most patients (33 out of 43) indicated that the booklets and cards are reassuring or helpful, and 53% indicated that they include a lot or quite a lot of information that they do not already know. Conclusion. Further evaluation will be valuable in determining whether the ultimate aims of this project have been met.