Perceptions of time spent pursuing cancer care among patients, caregivers, and oncology professionals
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ORIGINAL ARTICLE
Perceptions of time spent pursuing cancer care among patients, caregivers, and oncology professionals Evan T. Hall 1,2 & Deepa Sridhar 3 & Surbhi Singhal 4 & Touran Fardeen 5 & Sheila Lahijani 6 & Ranak Trivedi 6,7 & Caroline Gray 8 & Lidia Schapira 9 Received: 10 March 2020 / Accepted: 8 September 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Purpose Patients with cancer spend significant time receiving treatment and recovering from side effects. Little is known about how patients and their caregivers perceive time spent receiving cancer treatment and how this impacts health-related quality of life (HRQoL). Our study aims to characterize perceptions of time invested in receiving cancer therapy as experienced by patients, caregivers, and oncology professionals. Methods We conducted semi-structured interviews with patients undergoing treatment for advanced lung cancer and melanoma, their informal caregivers, and oncology professionals (physicians, nurses, social workers, and chaplains). Participants received and provided care at a tertiary cancer center. Interviews were audiorecorded and transcribed verbatim. Transcripts were analyzed qualitatively using predominantly inductive coding to identify themes relating to time perception and cancer care. Results We interviewed 29 participants (11 patients, 7 informal caregivers, and 11 oncology professionals) and found they consistently differentiated between time remaining in life (“existential time”) and time required to manage cancer treatment and symptoms (“chronological time”). Patients and caregivers reported distress around the mechanics of oncologic care that interrupted their daily lives (hobbies, activities). Participants described the impact of time invested in cancer care on dimensions of quality of life, ranging from minimal to substantial negative impact. Conclusions We found that the time spent undergoing cancer treatment affects well-being and often prevents patients and caregivers from participating in meaningful activities. The investment of personal time undergoing cancer therapy for patients with advanced solid tumors merits further study and can enhance communication between patients, caregivers, and their oncologists. Keywords Quality of life . Cancer . Existential distress . Cancer care logistics
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-020-05763-9) contains supplementary material, which is available to authorized users. * Evan T. Hall [email protected]
5
Stanford Healthcare, Stanford, CA, USA
6
Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA, USA
1
Division of Medical Oncology, University of Washington, 825 Eastlake Ave E, Mail Stop CE2-102, Seattle, WA 98115, USA
7
Center for Innovation to Implementation, VA Palo Alto Healthcare System, Palo Alto, CA, USA
2
Fred Hutchinson Cancer Research Center, Seattle, WA, USA
8
VA Palo Alto Healthcare System, Palo Alto, CA, USA
3
College of Osteopathic Medicin
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