Observational Study

. 2020 Sep 9;19(1):139.

doi: 10.1186/s12904-020-00642-w.

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

Janneke van Roij^{1

2

3

4}, Myrte Zijlstra^{5

6

7}, Laurien Ham^{5

6}, Linda Brom^{5

6}, Heidi Fransen^{5

6}, Art Vreugdenhil⁸, Natasja Raijmakers^{5

6}, Lonneke van de Poll-Franse^{5

9

10}; eQuiPe study group

Collaborators, Affiliations

Collaborators

eQuiPe study group:
Art Vreugdenhil, Maggy Youssef-ELSoud, Geert-Jan Creemers, Ben van den Borne, Wouter de Jong, Arnold Baars, Marieke van den Beuken-van Everdingen, Evelien Kuip, René Bunnik, Mathijs Hendriks, Caroline Mandigers, Jean-Paul van Basten, Vivian van Kampen-van den Boogaart, Philo Werner, Lia van Zuylen, Alexander de Graeff, Anne van Lindert, Marcel Soesan, Jarmo Hunting, Arno Smals, Linda van de Winkel, Gerben Stege, Liese Verhaert, Natascha Peters, Manon Pepels, Tineke Smilde, Peter Nieboer, Sander de Hosson, Marien den Boer, Cordula Pitz, Rick Heyne, Manuel Tjin-A-Ton, Annemieke van der Padt-Pruijsten, Paul van den Berg, Frans Krouwels, Lobke van Leeuwen-Snoeks, Femke van der Meer, Allert Vos, Gerrit Jan Veldhuis, Boelo Poppema, Martine Thijs-Visser, Roxane Heller-Baan, Marjolein van Laren, Karen Maassen van den Brink, Gea Douma, Jeroen Kloover, Dirkje Sommeijer, Lemke Pronk, Ellen Janssens-van Vliet, Lilly-Ann van der Velden, Emma Hafkamp, Henk Codrington, Svitlana Tarasevych, Aart van Bochove, Annemieke van der Padt-Pruijsten, Jaap de Boer, Geraldine Vink

Affiliations

¹ The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB, Utrecht, The Netherlands. j.vanroij@iknl.nl.
² CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands. j.vanroij@iknl.nl.
³ Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands. j.vanroij@iknl.nl.
⁴ Department of Psychology, Pantein, Boxmeer, The Netherlands. j.vanroij@iknl.nl.
⁵ The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB, Utrecht, The Netherlands.
⁶ Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands.
⁷ Department of Internal Medicine, St. Jans Gasthuis, Weert, The Netherlands.
⁸ Department of Medical Oncology, Maxima Medical Centre, Eindhoven, The Netherlands.
⁹ CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands.
¹⁰ Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.

PMID: 32907564
PMCID: PMC7488051
DOI: 10.1186/s12904-020-00642-w

Observational Study

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

Janneke van Roij et al. BMC Palliat Care. 2020.

. 2020 Sep 9;19(1):139.

doi: 10.1186/s12904-020-00642-w.

Authors

Collaborators

eQuiPe study group:
Art Vreugdenhil, Maggy Youssef-ELSoud, Geert-Jan Creemers, Ben van den Borne, Wouter de Jong, Arnold Baars, Marieke van den Beuken-van Everdingen, Evelien Kuip, René Bunnik, Mathijs Hendriks, Caroline Mandigers, Jean-Paul van Basten, Vivian van Kampen-van den Boogaart, Philo Werner, Lia van Zuylen, Alexander de Graeff, Anne van Lindert, Marcel Soesan, Jarmo Hunting, Arno Smals, Linda van de Winkel, Gerben Stege, Liese Verhaert, Natascha Peters, Manon Pepels, Tineke Smilde, Peter Nieboer, Sander de Hosson, Marien den Boer, Cordula Pitz, Rick Heyne, Manuel Tjin-A-Ton, Annemieke van der Padt-Pruijsten, Paul van den Berg, Frans Krouwels, Lobke van Leeuwen-Snoeks, Femke van der Meer, Allert Vos, Gerrit Jan Veldhuis, Boelo Poppema, Martine Thijs-Visser, Roxane Heller-Baan, Marjolein van Laren, Karen Maassen van den Brink, Gea Douma, Jeroen Kloover, Dirkje Sommeijer, Lemke Pronk, Ellen Janssens-van Vliet, Lilly-Ann van der Velden, Emma Hafkamp, Henk Codrington, Svitlana Tarasevych, Aart van Bochove, Annemieke van der Padt-Pruijsten, Jaap de Boer, Geraldine Vink

Affiliations

¹ The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB, Utrecht, The Netherlands. j.vanroij@iknl.nl.
² CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands. j.vanroij@iknl.nl.
³ Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands. j.vanroij@iknl.nl.
⁴ Department of Psychology, Pantein, Boxmeer, The Netherlands. j.vanroij@iknl.nl.
⁵ The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB, Utrecht, The Netherlands.
⁶ Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands.
⁷ Department of Internal Medicine, St. Jans Gasthuis, Weert, The Netherlands.
⁸ Department of Medical Oncology, Maxima Medical Centre, Eindhoven, The Netherlands.
⁹ CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands.
¹⁰ Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.

PMID: 32907564
PMCID: PMC7488051
DOI: 10.1186/s12904-020-00642-w

Abstract

Background: Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care.

Methods: A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients' death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors.

Discussion: This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care.

Trial registration: Trial NL6408 ( NTR6584 ). Registered in Netherlands Trial Register on June 30, 2017.

Keywords: Advanced cancer; Longitudinal cohort study; Palliative care; Prospective study; Quality of care; Quality of life; Relatives; Study protocol.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

See this image and copyright information in PMC

References

1. CBS. 2017. https://www.cbs.nl/nl-nl/nieuws/2018/28/kanker-oorzaak-bij-31-procent-va.... Last checked April 24th 2019.
1. CBS. 2014. https://www.cbs.nl/nl-nl/nieuws/2014/50/de-meeste-mensen-sterven-aan-kan.... Last checked April 24th 2019.
1. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011. - PMC - PubMed
1. WHO . Definition palliative care. 2002.
1. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–742. - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

n.a./Roparun Foundation

LinkOut - more resources

Full Text Sources
Medical
- MedlinePlus Health Information
- The YODA Project

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

Collaborators

Affiliations

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical