Session
26
Oral presentations Nursing, Supportive & Palliative care, Rehabilitation & Survivorship
Nov. 20, 2024,
1:45 p.m. - 3:15 p.m.,
Lima
Abstract
1
Onco-hematology care through patients’ eyes: findings from the 2023 Swiss Cancer Patient Experiences (SCAPE) survey
C. Arditi1, S. Schobinger2, R. Pfau2, A. Heuss2, A. Frei1, M. Eicher1, 3, Presenter: S. Schobinger2 (1Lausanne, 2Aesch, 3Bern)
Objective
Patient-reported experiences of care measures (PREMs) are essential for understanding how well the care system is addressing both the medical and psychosocial needs of patients. To date, experiences of patients diagnosed with hematological cancer have rarely been investigated in Switzerland. Initiated by a patient association, this study aimed to evaluate patient-reported experiences among individuals with leukemia, lymphoma, or myeloma to identify areas for improvement in onco-hematology care.
Methods
We analyzed data from the third Swiss Cancer Patient Experiences (SCAPE) survey, a cross-sectional, multicenter study conducted in 2023. Patients from 23 cancer centers across Switzerland were asked to complete a survey on care experiences before diagnosis, at diagnosis, and during inpatient, outpatient and home care, as well as on survivorship care. Rates of positive experiences were compared between patients with hematological and other cancers.
Results
Of nearly 17,000 invited patients, 7,844 completed the questionnaire (49% response rate), including 1,126 with hematological cancer (14%). Overall, positive experiences were reported for most aspects of care, with some notable differences between onco-hematology and other cancer patients. The highest positive experiences included being treated with respect (95.8%), in regular contact with a reference person (98.3%), and access to diagnostic testing (91.5%). Lower-rated experiences included managing long-term symptoms (59.5%), receiving financial aid information (58.4%) and receiving information on late side effects (57.6%). Fewer onco-hematology patients reported timely access to a specialist (65.7% vs 73.3%) and adequate support for managing radiotherapy side effects (69.9% vs 78.5%) compared to other cancer patients. Despite this, onco-hematology patients rated their overall care slightly higher than patients with solid tumors (9.14 vs 9.01).
Conclusion
While overall experiences with cancer care were positive, onco-hematology patients face distinct challenges, especially in survivorship care. Strengthening collaboration between cancer centers and patient organizations could help address these issues. Theses challenges should be considered in future developments, in line with the national cancer plan currently being developed under the leadership of the Federal Office of Public Health.