TY - JOUR
T1 - Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type
T2 - results of the multicentre observational eQuiPe study
AU - van Oss, Anouk
AU - Duijts, Saskia F. A.
AU - van Laarhoven, Hanneke
AU - Kuip, Evelien
AU - Raijmakers, Natasja J. H.
AU - Brom, Linda
N1 - Funding Information: The eQuiPe study is funded by the Roparun Foundation. Publisher Copyright: © 2023, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
PY - 2023/8
Y1 - 2023/8
N2 - Purpose: Patients with a rare cancer face difficulties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived quality of care (QoC) and quality of life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers. Methods: In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients. Results: Of the 1087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced significantly lower continuity of care (77.8 vs. 71.1 respectively, p = 0.011) and social functioning (78.8 vs. 72.6 respectively, p = 0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing. Conclusions: Patients with advanced rare cancers experience less continuity of care, and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers. Implications for Cancer Survivors: To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients’ social functioning.
AB - Purpose: Patients with a rare cancer face difficulties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived quality of care (QoC) and quality of life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers. Methods: In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients. Results: Of the 1087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced significantly lower continuity of care (77.8 vs. 71.1 respectively, p = 0.011) and social functioning (78.8 vs. 72.6 respectively, p = 0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing. Conclusions: Patients with advanced rare cancers experience less continuity of care, and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers. Implications for Cancer Survivors: To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients’ social functioning.
KW - Advanced cancer
KW - Continuity of care
KW - Palliative care
KW - Quality of care
KW - Quality of life
KW - Rare cancer
UR - http://www.scopus.com/inward/record.url?scp=85145503679&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s11764-022-01323-8
DO - https://doi.org/10.1007/s11764-022-01323-8
M3 - Article
C2 - 36595186
SN - 1932-2259
VL - 17
SP - 997
EP - 1007
JO - Journal of Cancer Survivorship
JF - Journal of Cancer Survivorship
IS - 4
ER -