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

eQuiPe study group, 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 SmalsLinda 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, 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

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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 languageEnglish
Article number139
Pages (from-to)139
JournalBMC palliative care
Volume19
Issue number1
DOIs
Publication statusPublished - 9 Sept 2020

Keywords

  • Advanced cancer
  • Longitudinal cohort study
  • Palliative care
  • Prospective study
  • Quality of care
  • Quality of life
  • Relatives
  • Study protocol

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