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

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Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study. / Piil, K; Jakobsen, J; Christensen, K B; Juhler, M; Guetterman, T C; Fetters, M D; Jarden, M.

In: European Journal of Cancer Care, Vol. 27, No. 2, e12806, 03.2018, p. 1-13.

Research output: Contribution to journalJournal articlepeer-review

Harvard

Piil, K, Jakobsen, J, Christensen, KB, Juhler, M, Guetterman, TC, Fetters, MD & Jarden, M 2018, 'Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study', European Journal of Cancer Care, vol. 27, no. 2, e12806, pp. 1-13. https://doi.org/10.1111/ecc.12806

APA

Piil, K., Jakobsen, J., Christensen, K. B., Juhler, M., Guetterman, T. C., Fetters, M. D., & Jarden, M. (2018). Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study. European Journal of Cancer Care, 27(2), 1-13. [e12806]. https://doi.org/10.1111/ecc.12806

Vancouver

Piil K, Jakobsen J, Christensen KB, Juhler M, Guetterman TC, Fetters MD et al. Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study. European Journal of Cancer Care. 2018 Mar;27(2):1-13. e12806. https://doi.org/10.1111/ecc.12806

Author

Piil, K ; Jakobsen, J ; Christensen, K B ; Juhler, M ; Guetterman, T C ; Fetters, M D ; Jarden, M. / Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study. In: European Journal of Cancer Care. 2018 ; Vol. 27, No. 2. pp. 1-13.

Bibtex

@article{5dde19da82254ff195e1b532b519278c,
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.",
author = "K Piil and J Jakobsen and Christensen, {K B} and M Juhler and Guetterman, {T C} and Fetters, {M D} and M 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 = "1--13",
journal = "European Journal of Cancer Care",
issn = "0961-5423",
publisher = "Wiley-Blackwell",
number = "2",

}

RIS

TY - JOUR

T1 - Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study

AU - Piil, K

AU - Jakobsen, J

AU - Christensen, K B

AU - Juhler, M

AU - Guetterman, T C

AU - Fetters, M D

AU - Jarden, M

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.

U2 - 10.1111/ecc.12806

DO - 10.1111/ecc.12806

M3 - Journal article

C2 - 29314470

VL - 27

SP - 1

EP - 13

JO - European Journal of Cancer Care

JF - European Journal of Cancer Care

SN - 0961-5423

IS - 2

M1 - e12806

ER -

ID: 199063380