Introduction: A high proportion of patients treated for Hodgkin lymphoma and diffuse large B cell lymphoma are cured following chemotherapy/radiotherapy but long term quality of life and survival are undermined by the late toxicities of treatment including second cancers, cardiovascular disease and hormonal disorders. For best outcome these need to be anticipated/well managed and survivors/health care professionals made aware of how best to achieve this. The aim of ADAPT is to improve the management of patients likely cured of lymphoma by increasing survivor/primary care physician awareness of late treatment toxicities whilst reducing the burden on survivors of attendance at hospital clinics and maintaining accurate outcomes data.
Methods: After 5 yrs of hospital follow-up, likely cured patients are offered a final “ADAPT consultation” focused on the future low risk of recurrence and potential for late treatment toxicity. An individualised treatment summary and late toxicity management plan (LTMP) is given to survivors and copied to their primary care physician. The LTMP is constructed by selecting from a menu of pre-written paragraphs describing the possible late toxicities of each treatment, their symptoms, management and key points (cardiac key points; don’t smoke, take exercise, check blood pressure). These paragraphs were all reviewed and approved for relevance and readability by a panel of 25 lymphoma survivors. Following the ADAPT consultation, survivors receive no further routine hospital appointments but can access the service immediately if the need arises. An annual questionnaire is issued by e-mail or letter according to survivor preference enquiring about quality of life, new diagnoses, new medication or surgical interventions and this information added to the survivor database.
Results: 600 survivors have so far been ADAPTed and anecdotal evidence suggests satisfaction with the service. On the basis that the average time for a return journey from home or work, waiting and consultation is 3 hours, 600 x 3 = 1800 survivor hours or 1800/40 = 45 working weeks have been saved per year.
Conclusions: The ADAPT programme provides long term lymphoma survivors and their primary care physician with individualised information about late treatment toxicity, shifts the focus of management of this from the hospital to primary care and saves time whilst maintaining accurate long term outcomes data. Formal evaluation of this new service is planned.