PT - JOURNAL ARTICLE AU - Anjali V Desai AU - Virginia M Klimek AU - Peter J Wan AU - Aileen Heinberg AU - Kelley L Anderson AU - Camila Bernal AU - Judith E Nelson TI - Palliative Medicine in Myelodysplastic Syndromes: Patients and Caregivers - A Qualitative Study AID - 10.1136/bmjspcare-2020-002865 DP - 2021 Apr 26 TA - BMJ Supportive & Palliative Care PG - bmjspcare-2020-002865 4099 - http://spcare.bmj.com/content/early/2021/04/26/bmjspcare-2020-002865.short 4100 - http://spcare.bmj.com/content/early/2021/04/26/bmjspcare-2020-002865.full AB - Objectives Evidence-based guidelines call for integration of palliative care within oncology from diagnosis. Misperceptions about palliative care have impeded implementation. Prior research has not examined perceptions about ‘palliative care’ versus ‘supportive care’ among patients and caregivers to whom this care is introduced routinely as part of comprehensive cancer care. We conducted a qualitative study of patients with myelodysplastic syndromes (MDS) and their informal caregivers to elicit perceptions of ‘palliative care’ and ‘supportive care’ before and after they received integrated primary/specialist palliative care from diagnosis.Methods Patients with newly diagnosed MDS and caregivers were interviewed about their understanding of ‘palliative care’ and ‘supportive care’ at diagnosis and follow-up. Interviews were audio-recorded, transcribed, and analysed by an interdisciplinary team.Results Forty-eight interviews were conducted in total, including with 21 patients and 13 caregivers at diagnosis, and 10 patients and 4 caregivers at follow-up. Initially, 28/34 participants (82%) associated ‘palliative care’ with death or fear/alarm. At follow-up, 11/14 participants (79%) recognised that ‘palliative care’ is not only for terminally ill patients, yet 13/14 participants (93%) still felt apprehensive about the term. Initially, 24/34 participants (71%) felt ‘supportive care’ sounded ‘positive’ and 12/14 participants (86%) reported this at follow-up. No participant associated ‘supportive care’ with death or fear/alarm at either time point. Among participants who had a preference, ‘supportive care’ was the preferred term initially and at follow-up.Conclusions Patients with MDS and caregivers receiving integrated primary/specialist palliative care from diagnosis responded more favourably to and felt less apprehensive about ‘supportive care’, initially and at follow-up.