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; Myrte Zijlstra; Laurien Ham; Linda Brom; Heidi Fransen; Art Vreugdenhil; Natasja Raijmakers; Lonneke van de Poll-Franse; 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

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^*, Myrte Zijlstra, Laurien Ham, Linda Brom, Heidi Fransen, Art Vreugdenhil, Natasja Raijmakers, Lonneke van de Poll-Franse, 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 BastenVivian 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

^*Corresponding author for this work

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

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.

Original language	English
Article number	139
Journal	BMC Palliative Care
Volume	19
Issue number	1
DOIs	https://doi.org/10.1186/s12904-020-00642-w
Publication status	Published - 9 Sep 2020

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van Roij, J., Zijlstra, M., Ham, L., Brom, L., Fransen, H., Vreugdenhil, A., Raijmakers, N., van de Poll-Franse, L., Vreugdenhil, A., Youssef-Elsoud, M., Creemers, G-J., van den Borne, B., de Jong, W., Baars, A., van den Beuken - van Everdingen, M., Kuip, E., Bunnik, R., Hendriks, M., Mandigers, C., ... Vink, G. (2020). Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): A study protocol. BMC Palliative Care, 19(1), [139]. https://doi.org/10.1186/s12904-020-00642-w

@article{e2b771a8f0774f47b6411394dec70851,

title = "Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): A study protocol",

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.",

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

year = "2020",

month = sep,

day = "9",

doi = "10.1186/s12904-020-00642-w",

language = "English",

volume = "19",

journal = "BMC Palliative Care",

issn = "1472-684X",

publisher = "BioMed Central",

number = "1",

}

van Roij, J, Zijlstra, M, Ham, L, Brom, L, Fransen, H, Vreugdenhil, A, Raijmakers, N, van de Poll-Franse, L, Vreugdenhil, A, Youssef-Elsoud, M, Creemers, G-J, van den Borne, B, de Jong, W, Baars, A, van den Beuken - van Everdingen, M, Kuip, E, Bunnik, R, Hendriks, M, Mandigers, C, van Basten, J-P, van Kampen - van den Boogaart, V, Werner, P, van Zuylen, L, de Graeff, A, van Lindert, A, Soesan, M, Hunting, J, Smals, A, van de Winkel, L, Stege, G, Verhaert, L, Peters, N, Pepels, M, Smilde, T, Nieboer, P, de Hosson, S, den Boer, M, Pitz, C, Heyne, R, Tjin-A-Ton, M, van der Padt - Pruijsten, A, van den Berg, P, Krouwels, F, van Leeuwen-Snoeks, L, van der Meer, F, Vos, A, Veldhuis, GJ, Poppema, B, Thijs-Visser, M, Heller-Baan, R, van Laren, M, van den Brink, KM, Douma, G, Kloover, J, Sommeijer, D , Pronk, L, Janssens - van Vliet, E, van der Velden, L-A, Hafkamp, E, Codrington, H, Tarasevych, S, van Bochove, A, van der Padt - Pruijsten, A, de Boer, J & Vink, G 2020, 'Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): A study protocol', BMC Palliative Care, vol. 19, no. 1, 139. https://doi.org/10.1186/s12904-020-00642-w

TY - JOUR

T1 - Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): A study protocol

AU - van Roij, Janneke

AU - Zijlstra, Myrte

AU - Ham, Laurien

AU - Brom, Linda

AU - Fransen, Heidi

AU - Vreugdenhil, Art

AU - Raijmakers, Natasja

AU - van de Poll-Franse, Lonneke

AU - Vreugdenhil, Art

AU - Youssef-Elsoud, Maggy

AU - Creemers, Geert-Jan

AU - van den Borne, Ben

AU - de Jong, Wouter

AU - Baars, Arnold

AU - van den Beuken - van Everdingen, Marieke

AU - Kuip, Evelien

AU - Bunnik, René

AU - Hendriks, Mathijs

AU - Mandigers, Caroline

AU - van Basten, Jean-Paul

AU - van Kampen - van den Boogaart, Vivian

AU - Werner, Philo

AU - van Zuylen, Lia

AU - de Graeff, Alexander

AU - van Lindert, Anne

AU - Soesan, Marcel

AU - Hunting, Jarmo

AU - Smals, Arno

AU - van de Winkel, Linda

AU - Stege, Gerben

AU - Verhaert, Liese

AU - Peters, Natascha

AU - Pepels, Manon

AU - Smilde, Tineke

AU - Nieboer, Peter

AU - de Hosson, Sander

AU - den Boer, Marien

AU - Pitz, Cordula

AU - Heyne, Rick

AU - Tjin-A-Ton, Manuel

AU - van der Padt - Pruijsten, Annemieke

AU - van den Berg, Paul

AU - Krouwels, Frans

AU - van Leeuwen-Snoeks, Lobke

AU - van der Meer, Femke

AU - Vos, Allert

AU - Veldhuis, Gerrit Jan

AU - Poppema, Boelo

AU - Thijs-Visser, Martine

AU - Heller-Baan, Roxane

AU - van Laren, Marjolein

AU - van den Brink, Karen Maassen

AU - Douma, Gea

AU - Kloover, Jeroen

AU - Sommeijer, Dirkje

AU - Pronk, Lemke

AU - Janssens - van Vliet, Ellen

AU - van der Velden, Lilly-Ann

AU - Hafkamp, Emma

AU - Codrington, Henk

AU - Tarasevych, Svitlana

AU - van Bochove, Aart

AU - van der Padt - Pruijsten, Annemieke

AU - de Boer, Jaap

AU - Vink, Geraldine

PY - 2020/9/9

Y1 - 2020/9/9

N2 - 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.

AB - 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.

UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85090819650&origin=inward

UR - https://www.ncbi.nlm.nih.gov/pubmed/32907564

U2 - 10.1186/s12904-020-00642-w

DO - 10.1186/s12904-020-00642-w

M3 - Article

C2 - 32907564

VL - 19

JO - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

IS - 1

M1 - 139

ER -

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

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