TY - JOUR
T1 - The solitary versus supported experience
T2 - Care inequality between rare and common cancer patients
AU - de Heus, Eline
AU - van de Camp, Kalinka
AU - Driehuis, Esmee
AU - van der Zwan, Jan Maarten
AU - van Herpen, Carla M. L.
AU - Merkx, Matthias A. W.
AU - Duijts, Saskia F. A.
N1 - Funding Information: The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Publisher Copyright: © 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.
PY - 2023/11
Y1 - 2023/11
N2 - Objective: Patients with a rare cancer (RC) often have a more complex disease trajectory than patients with a common cancer. Research involving both patient groups is needed to identify differences and resemblances. In this study, we aimed to explore and compare experiences, needs and quality of life of patients with rare and common cancer throughout the disease trajectory. Methods: A qualitative focus group study was conducted, including patients with rare and common cancer (n = 25). Participants were purposively selected to reflect heterogeneity of cancer types. A semi-structured topic list was used. Focus groups (n = 4) were recorded, transcribed verbatim and analysed, using thematic analysis. Results: Three themes were identified emphasizing care inequality between patients with rare and common cancer: (1) The solitary experience: lack of information and support impact the RC patient, (2) Sudden impact, but recognition reduces the common cancer burden, and (3) Absence of psychosocial care requires being empowered as a cancer patient. Conclusions: Patients with RC are faced with enormous challenges due to the high impact of their solitary experience on their quality of life, while patients with common cancer generally experience social support and recognition alleviating their burden. Centralisation of care for patients with RC is needed and tailored psychosocial care should be provided to overcome inequalities.
AB - Objective: Patients with a rare cancer (RC) often have a more complex disease trajectory than patients with a common cancer. Research involving both patient groups is needed to identify differences and resemblances. In this study, we aimed to explore and compare experiences, needs and quality of life of patients with rare and common cancer throughout the disease trajectory. Methods: A qualitative focus group study was conducted, including patients with rare and common cancer (n = 25). Participants were purposively selected to reflect heterogeneity of cancer types. A semi-structured topic list was used. Focus groups (n = 4) were recorded, transcribed verbatim and analysed, using thematic analysis. Results: Three themes were identified emphasizing care inequality between patients with rare and common cancer: (1) The solitary experience: lack of information and support impact the RC patient, (2) Sudden impact, but recognition reduces the common cancer burden, and (3) Absence of psychosocial care requires being empowered as a cancer patient. Conclusions: Patients with RC are faced with enormous challenges due to the high impact of their solitary experience on their quality of life, while patients with common cancer generally experience social support and recognition alleviating their burden. Centralisation of care for patients with RC is needed and tailored psychosocial care should be provided to overcome inequalities.
KW - cancer
KW - focus groups
KW - oncology
KW - patient experience
KW - qualitative research
KW - quality of life
KW - rare cancer
UR - http://www.scopus.com/inward/record.url?scp=85170660805&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/pon.6216
DO - https://doi.org/10.1002/pon.6216
M3 - Article
C2 - 37698502
SN - 1057-9249
VL - 32
SP - 1667
EP - 1674
JO - Psycho-Oncology
JF - Psycho-Oncology
IS - 11
ER -