Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)

Janneke van Roij; Natasja Raijmakers; Laurien Ham; Marieke van den Beuken-van Everdingen; Ben van den Borne; Geert-Jan Creemers; Jarmo Cornelis Hunting; Evelien Kuip; Lobke van Leeuwen; Hanneke van Laarhoven; Caroline Mandigers; Peter Nieboer; Lilly-Ann van der Velden; Lia van Zuylen; John Gelissen; Myrte Zijlstra; Linda Brom; Heidi P Fransen; Lonneke van de Poll-Franse; eQuiPe study group

doi:10.1016/j.ejca.2022.01.039

Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)

Janneke van Roij^*, Natasja Raijmakers, Laurien Ham, Marieke van den Beuken-van Everdingen, Ben van den Borne, Geert-Jan Creemers, Jarmo Cornelis Hunting, Evelien Kuip, Lobke van Leeuwen, Hanneke van Laarhoven, Caroline Mandigers, Peter Nieboer, Lilly-Ann van der Velden, Lia van Zuylen, John Gelissen, Myrte Zijlstra, Linda Brom, Heidi P Fransen, Lonneke van de Poll-Franse, eQuiPe study group

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account.

METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC).

RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01).

CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care.

TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Original language	English
Pages (from-to)	125-135
Number of pages	11
Journal	European Journal of Cancer
Volume	165
Early online date	27 Feb 2022
DOIs	https://doi.org/10.1016/j.ejca.2022.01.039
Publication status	Published - Apr 2022

Keywords

Advanced cancer
Caregivers
FAMILY CAREGIVERS
OUTCOMES
PALLIATIVE CARE
QLQ-C30
QUESTIONNAIRE
Quality of care
Quality of life
SATISFACTION
SOCIETY

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van Roij, J., Raijmakers, N., Ham, L., van den Beuken-van Everdingen, M., van den Borne, B., Creemers, G.-J., Cornelis Hunting, J., Kuip, E., van Leeuwen, L., van Laarhoven, H., Mandigers, C., Nieboer, P., van der Velden, L.-A., Zuylen, L. V., Gelissen, J., Zijlstra, M., Brom, L., Fransen, H. P., van de Poll-Franse, L., & eQuiPe study group (2022). Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe). European Journal of Cancer, 165, 125-135. https://doi.org/10.1016/j.ejca.2022.01.039

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title = "Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)",

abstract = "AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account.METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC).RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01).CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care.TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.",

keywords = "Advanced cancer, Caregivers, FAMILY CAREGIVERS, OUTCOMES, PALLIATIVE CARE, QLQ-C30, QUESTIONNAIRE, Quality of care, Quality of life, SATISFACTION, SOCIETY",

author = "{van Roij}, Janneke and Natasja Raijmakers and Laurien Ham and {van den Beuken-van Everdingen}, Marieke and {van den Borne}, Ben and Geert-Jan Creemers and {Cornelis Hunting}, Jarmo and Evelien Kuip and {van Leeuwen}, Lobke and {van Laarhoven}, Hanneke and Caroline Mandigers and Peter Nieboer and {van der Velden}, Lilly-Ann and Zuylen, {Lia van} and John Gelissen and Myrte Zijlstra and Linda Brom and Fransen, {Heidi P} and {van de Poll-Franse}, Lonneke and {eQuiPe study group}",

year = "2022",

month = apr,

doi = "10.1016/j.ejca.2022.01.039",

language = "English",

volume = "165",

pages = "125--135",

journal = "European Journal of Cancer",

issn = "0959-8049",

publisher = "ELSEVIER SCI LTD",

}

van Roij, J, Raijmakers, N, Ham, L, van den Beuken-van Everdingen, M, van den Borne, B, Creemers, G-J, Cornelis Hunting, J, Kuip, E, van Leeuwen, L, van Laarhoven, H, Mandigers, C, Nieboer, P, van der Velden, L-A, Zuylen, LV, Gelissen, J, Zijlstra, M, Brom, L, Fransen, HP, van de Poll-Franse, L & eQuiPe study group 2022, 'Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)', European Journal of Cancer, vol. 165, pp. 125-135. https://doi.org/10.1016/j.ejca.2022.01.039

TY - JOUR

T1 - Quality of life and quality of care as experienced by patients with advanced cancer and their relatives

T2 - A multicentre observational cohort study (eQuiPe)

AU - van Roij, Janneke

AU - Raijmakers, Natasja

AU - Ham, Laurien

AU - van den Beuken-van Everdingen, Marieke

AU - van den Borne, Ben

AU - Creemers, Geert-Jan

AU - Cornelis Hunting, Jarmo

AU - Kuip, Evelien

AU - van Leeuwen, Lobke

AU - van Laarhoven, Hanneke

AU - Mandigers, Caroline

AU - Nieboer, Peter

AU - van der Velden, Lilly-Ann

AU - Zuylen, Lia van

AU - Gelissen, John

AU - Zijlstra, Myrte

AU - Brom, Linda

AU - Fransen, Heidi P

AU - van de Poll-Franse, Lonneke

AU - eQuiPe study group

PY - 2022/4

Y1 - 2022/4

N2 - AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account.METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC).RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01).CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care.TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

AB - AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account.METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC).RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01).CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care.TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

KW - Advanced cancer

KW - Caregivers

KW - FAMILY CAREGIVERS

KW - OUTCOMES

KW - PALLIATIVE CARE

KW - QLQ-C30

KW - QUESTIONNAIRE

KW - Quality of care

KW - Quality of life

KW - SATISFACTION

KW - SOCIETY

U2 - 10.1016/j.ejca.2022.01.039

DO - 10.1016/j.ejca.2022.01.039

M3 - Article

C2 - 35235869

SN - 0959-8049

VL - 165

SP - 125

EP - 135

JO - European Journal of Cancer

JF - European Journal of Cancer

ER -