Survivorship and Patients Perspective
Sally Taylor1, Valerie Goode2, Ellie White2, Richard Cowan2,3, Janelle Yorke1,4, John Radford2,3
1The Christie NHS Foundation Trust, School of Oncology, Christie Patient Centered Research, Manchester, UK,2The Christie NHS Foundation Trust, The Lymphoma team, Manchester, UK,3Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK,4Division of Nursing, Midwifery and Social Work, School of Health, University of Manchester, Manchester, UK
Introduction: Most relapses in curable lymphomas will occur within 5 years. Beyond this time medical attention focuses on managing late treatment toxicity which may be best delivered by GPs. In the ADAPT programme, after 5 years of regular follow-up, disease-free patients have an ADAPT consultation which provides them with a bespoke management plan detailing health issues they may experience, their management and relevant screening programmes/interventions. The same information is sent to GPs. Patients remain in open follow-up to allow rapid access to the lymphoma team if required but are not seen routinely. The study aimed to evaluate patient/GP views of ADAPT.
Methods: A sample of 231 patients randomly selected from 610 ADAPTed patients and their GPs were sent a multiple choice and free text questionnaire. 18 semi-structured patient interviews were conducted and analysed thematically.\
Results: 159 (69%) patients and 119 (52%) GP questionnaires were returned. 17 GP questionnaires were returned uncompleted as the patient was not registered at the practice. Results are presented from 102 completed questionnaires. 118 (74%) patients found the information helpful and 60 (38%) referred back to it often. The programme had several positive patient effects: 68 (43%) made lifestyle changes; 81 (51%) felt in control; 84 (53%) felt more confident managing their health; 130 (82%) were aware of risk factors. Patients were supportive of open follow-up, only 8 (5%) would have preferred discharge. Over 80% of patients felt confident to seek help, knew who to contact and felt they would get help quickly. The majority of patients did not feel worried, vulnerable or neglected. GPs were generally positive: 45 (45%) said the information increased confidence; 51 (51%) did not feel ADAPT had increased their workload; 78 (79%) were aware of risk factors. 70 (69%) felt well-equipped to manage follow-up and 65 (64%) felt GP follow-up after 5 years was appropriate. Patients and GPs emphasised the need for clear guidance of what is expected of them and suggested a digital system may be beneficial.
Conclusion: Patients and GPs are supportive of ADAPT. Patients reported benefits in terms of increased knowledge, confidence and control and some made positive lifestyle changes. GPs also reported that ADAPT information improved their confidence and they felt well equipped to manage follow-up. Both groups requested clearer guidance around ADAPT “kick-off” and subsequent GP consultations.