Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and lif
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STUDY PROTOCOL
Open Access
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 Roij1,2,3,4* , Myrte Zijlstra1,3,5, Laurien Ham1,3, Linda Brom1,3, Heidi Fransen1,3, Art Vreugdenhil6, Natasja Raijmakers1,3, Lonneke van de Poll-Franse1,2,7 and eQuiPe study group
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: Study protocol, Prospective study, Longitudinal cohort study, Quality of care, Quality of life, Palliative care, Advanced cancer, Relatives
* Correspondence: [email protected] 1 The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB Utrecht, The Netherlands 2 CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creat
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