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Exploring Perceptions, Opinions, and Needs of Adult and Pediatric Cancer Patients, Caregivers, and Healthcare Professionals Towards Low-Fidelity Versions of the MyPal Project's Applications: Findings from 12 Pre-Pilot Focus Groups in 4 European Countries of an ePRO Intervention for Palliative Cancer Care
ABSTRACT
Background:
Palliative care is crucial for patients with life-threatening and serious diseases like cancer, addressing their physical, psychosocial, and spiritual needs. Haematological Malignancies (HMs) significantly contribute to global cancer cases, impacting both older adults and children. To meet the increasing demand for palliative care, electronic patient-reported outcome (ePRO) interventions have emerged, offering valuable insights into patient monitoring and treatment decision-making.
Objective:
This study aims to explore the perceptions, opinions, and needs of adult and pediatric cancer patients, caregivers, and healthcare professionals towards low-fidelity versions of the MyPal Project's applications, which are designed to improve palliative cancer care.
Methods:
Twelve pre-pilot focus groups were conducted across four European countries, involving a diverse sample of participants. Thematic analysis was utilized to identify and extract themes and subthemes from the focus group discussions.
Results:
Three main themes emerged from the focus group discussions. The first theme, "Improved Care," highlighted MyPal's potential to enhance healthcare through patient-reported measures, improving symptom monitoring, decision-making, and doctor-patient communication. The second theme, "Digital Communication Framework," addressed concerns about data privacy and the need for clearer guidelines regarding app-based reporting and phone calls. The third theme, "Applicability for Use in Healthcare," emphasized the importance of the system's ease of use, while concerns about intrusiveness and burden were raised.
Conclusions:
This study provides valuable insights into the perspectives of adult and pediatric cancer patients, caregivers, and healthcare professionals towards the MyPal Project's low-fidelity applications. Understanding end-users' perceptions and needs is vital for developing patient-centered eHealth interventions that can enhance the quality of life and care for cancer patients of all ages. These findings have implications for optimizing app design and implementation, ultimately promoting the successful integration of eHealth technologies into routine palliative care practice.
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