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Needs and preferences among patients with high-grade glioma and their caregivers: a longitudinal mixed methods study

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@article{b22d704f847f49e5a5cf64d417aff496,
title = "Needs and preferences among patients with high-grade glioma and their caregivers: a longitudinal mixed methods study",
abstract = "Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.",
keywords = "Journal Article",
author = "Karin Piil and Janus Jakobsen and Christensen, {Karl Bang} and Marianne Juhler and Guetterman, {Timothy C} and Fetters, {Michael D} and Mary Jarden",
note = "{\textcopyright} 2018 The Authors. European Journal of Cancer Care Published by John Wiley & Sons Ltd.",
year = "2018",
month = mar,
doi = "10.1111/ecc.12806",
language = "English",
volume = "27",
pages = "e12806",
journal = "European journal of cancer Care",
issn = "0961-5423",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "2",

}

RIS

TY - JOUR

T1 - Needs and preferences among patients with high-grade glioma and their caregivers

T2 - a longitudinal mixed methods study

AU - Piil, Karin

AU - Jakobsen, Janus

AU - Christensen, Karl Bang

AU - Juhler, Marianne

AU - Guetterman, Timothy C

AU - Fetters, Michael D

AU - Jarden, Mary

N1 - © 2018 The Authors. European Journal of Cancer Care Published by John Wiley & Sons Ltd.

PY - 2018/3

Y1 - 2018/3

N2 - Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.

AB - Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.

KW - Journal Article

U2 - 10.1111/ecc.12806

DO - 10.1111/ecc.12806

M3 - Journal article

C2 - 29314470

VL - 27

SP - e12806

JO - European journal of cancer Care

JF - European journal of cancer Care

SN - 0961-5423

IS - 2

ER -

ID: 53727119