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)

Eur J Cancer. 2022 Apr:165:125-135. doi: 10.1016/j.ejca.2022.01.039. Epub 2022 Feb 27.

Authors

Janneke van Roij¹, Natasja Raijmakers², Laurien Ham², Marieke van den Beuken-van Everdingen³, Ben van den Borne⁴, Geert-Jan Creemers⁵, Jarmo Cornelis Hunting⁶, Evelien Kuip⁷, Lobke van Leeuwen⁸, Hanneke van Laarhoven⁹, Caroline Mandigers¹⁰, Peter Nieboer¹¹, Lilly-Ann van der Velden¹², Lia van Zuylen¹³, John Gelissen¹⁴, Myrte Zijlstra¹⁵, Linda Brom², Heidi P Fransen², Lonneke van de Poll-Franse¹⁶; eQuiPe study group

Affiliations

¹ Netherlands Comprehensive Cancer Organization (IKNL), Department of Research & Development, Utrecht, the Netherlands; CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands; Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands; Libra Rehabilitation and Audiology, Tilburg, the Netherlands. Electronic address: j.vanroij@iknl.nl.
² Netherlands Comprehensive Cancer Organization (IKNL), Department of Research & Development, Utrecht, the Netherlands; Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands.
³ Maastricht University Medical Center, Center of Expertise Palliative Care, Maastricht, the Netherlands.
⁴ Catharina Hospital, Department of Pulmonology, Eindhoven, the Netherlands.
⁵ Catharina Hospital, Department of Medical Oncology, Eindhoven, the Netherlands.
⁶ St. Antonius Hospital, Department of Medical Oncology, Utrecht, the Netherlands.
⁷ Radboud University Medical Center, Department of Medical Oncology and Anesthesiology, Pain and Palliative Care, Nijmegen, the Netherlands.
⁸ Diakonessenhuis, Department of Medical Oncology, Utrecht, the Netherlands.
⁹ Amsterdam University Medical Centers, Department of Medical Oncology, Cancer Center Amsterdam, University of Amsterdam, Amsterdam, the Netherlands.
¹⁰ Canisius Wilhelmina Hospital, Department of Medical Oncology, Nijmegen, the Netherlands.
¹¹ Wilhelmina Hospital Assen, Department of Medical Oncology, Assen, the Netherlands.
¹² Department of Head and Neck Oncology and Surgery, Antoni van Leeuwenhoek/Netherlands Cancer Institute, Amsterdam, the Netherlands.
¹³ Erasmus Medical Center Cancer Institute, Department of Medical Oncology, Rotterdam, the Netherlands; Amsterdam University Medical Centers, Department of Medical Oncology, Free University, Amsterdam, the Netherlands.
¹⁴ Tilburg School of Social and Behavioral Sciences, Department of Methodology and Statistics, Tilburg University, Tilburg, the Netherlands.
¹⁵ Netherlands Comprehensive Cancer Organization (IKNL), Department of Research & Development, Utrecht, the Netherlands; Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands; Department of Internal Medicine, St. Jans Gasthuis, Weert, the Netherlands.
¹⁶ Netherlands Comprehensive Cancer Organization (IKNL), Department of Research & Development, Utrecht, the Netherlands; CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands; The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Amsterdam, the Netherlands.

PMID: 35235869
DOI: 10.1016/j.ejca.2022.01.039

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; Quality of care; Quality of life.

Publication types

Multicenter Study
Observational Study
Research Support, Non-U.S. Gov't

MeSH terms

Cohort Studies
Humans
Neoplasms* / complications
Prospective Studies
Quality of Life*
Surveys and Questionnaires

Associated data

NTR/NTR6584