TY - JOUR

T1 - Integrated palliative care networks from the perspectives of patients

T2 - A cross-sectional explorative study in five European countries

AU - den Herder-van der Eerden, Marlieke

AU - Ebenau, Anne

AU - Payne, Sheila

AU - Preston, Nancy

AU - Radbruch, Lukas

AU - Linge-Dahl, Lisa

AU - Csikos, Agnes

AU - Busa, Csilla

AU - Van Beek, Karen

AU - Groot, Marieke

AU - Vissers, Kris

AU - Hasselaar, Jeroen

PY - 2018/6/1

Y1 - 2018/6/1

N2 - Background: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives. Aim: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Design: Cross-sectional explorative design. Setting/participants: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. Results: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p <0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Conclusion: Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

AB - Background: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives. Aim: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Design: Cross-sectional explorative design. Setting/participants: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. Results: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p <0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Conclusion: Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

KW - cross-sectional studies

KW - Delivery of healthcare

KW - integrated

KW - palliative care

KW - patient navigation

U2 - 10.1177/0269216318756812

DO - 10.1177/0269216318756812

M3 - Journal article

AN - SCOPUS:85042234596

VL - 32

SP - 1103

EP - 1113

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 6

ER -