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Palliative Medicine in Myelodysplastic Syndromes: Patients and Caregivers - A Qualitative Study
  1. Anjali V Desai1,2,
  2. Virginia M Klimek1,2,
  3. Peter J Wan3,
  4. Aileen Heinberg4,
  5. Kelley L Anderson5,
  6. Camila Bernal1 and
  7. Judith E Nelson1,2
  1. 1Medicine, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  2. 2Medicine, Weill Cornell Medical College, New York, New York, USA
  3. 3Touro College of Osteopathic Medicine, New York, New York, USA
  4. 4Wells Fargo and Co, San Francisco, California, USA
  5. 5University of California System, Irvine, California, USA
  1. Correspondence to Dr Anjali V Desai, Medicine, Memorial Sloan Kettering Cancer Center, New York, NY 10065, USA; desaia2{at}mskcc.org

Abstract

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.

  • cancer
  • communication
  • haematological disease
  • supportive care
  • chronic conditions
  • education and training

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Footnotes

  • Presented at This work was presented in abstract form at the American Academy of Hospice and Palliative Medicine Annual Assembly, Orlando, FL, USA, 13–16 March 2019.

  • Funding AVD was the Frances Young Tang Research Fellow in Palliative Medicine at Memorial Sloan Kettering Cancer Center from 2016 to 2017. This project was supported in part by the Charles Hallac Fund for Palliative Care in Oncology at Memorial Sloan Kettering Cancer Center. This research was funded in part through the NCI MSK Cancer Centre Support Grant/Core Grant P30 CA008748.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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