Information needs and sources of information for patients during cancer follow-up.

BACKGROUND: Now more than ever, cancer patients want health information. Little has been published to characterize the information needs and preferred sources of that information for patients who have completed cancer treatment. METHODS: We used a nationally validated instrument to prospectively survey patients attending a cancer clinic for a post-treatment follow-up visit. All patients who came to the designated clinics between December 2011 and June 2012 were approached (N = 648), and information was collected only from those who agreed to proceed. RESULTS: The 411 patients who completed the instrument included individuals with a wide range of primary malignancies. Their doctor or health professional was overwhelmingly the most trusted source of cancer information, followed by the Internet, family, and friends. The least trusted sources of information included radio, newspaper, and television. Patients most preferred to receive personalized written information from their health care provider. CONCLUSIONS: Cancer survivors are keenly interested in receiving information about cancer, despite having undergone or finished active therapy. The data indicate that, for patients, their health care provider is the most trusted source of cancer information. Cancer providers should ask patients about the information they want and should direct them to trusted sources.

Delivery of cancer genetics services: The Royal Marsden telephone clinic model.

We have conducted a telelink telephone-led cancer genetic counselling model at The Royal Marsden NHS Foundation Trust. The study commenced in March 2004 and evaluation of the clinic was conducted over 17 months from March 2005 to the end of July 2006. A total of 612 patients had telephone consultations during this time, 228 of whom were referred from primary care with a median of 30 patients counselled per month (range of 19-63, depending on staff availability with average of two staff per clinic). Waiting times were measured for General Practitioner referrals and all 228 were counselled within the national target-stipulated 13 weeks (median 6 weeks, range 1-12). An additional 132 patients who were sent appointment letters after receipt of their family history questionnaires did not attend their appointments (18% of all potential referrals) and required recontacting by letter. After telephone counselling, 42% of patients were able to be discharged from the telephone clinic without a subsequent face-to-face appointment, thereby saving resources. The telephone clinic also had a short set-up time with flexibility on timing and day of administration, which would be an advantage in centres where outreach clinic facilities are scarce. The telelink telephone counselling model is highly efficient in triaging high risk individuals for face-to-face counselling as per the Kenilworth model, in effecting concentration of resources and in providing a flexible individual-centred approach to cancer genetic counselling delivery.