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Qualitative research
Protocol
A longitudinal, qualitative and quantitative exploration of daily life and need for rehabilitation among patients with high-grade gliomas and their caregivers
  1. K Piil1,2,
  2. M Jarden2,
  3. J Jakobsen3,
  4. K Bang Christensen4,
  5. M Juhler1,5
  1. 1Department of Neurosurgery, The University Hospital of Copenhagen, Rigshospitalet, Copenhagen, Denmark
  2. 2The University Hospitals Center for Health Science Research (UCSF), Center for Integrated Rehabilitation for patients with Cancer (CIRE), Copenhagen, Denmark
  3. 3The University Hospital of Copenhagen, Rigshospitalet, Neuroscience Center, Copenhagen, Denmark
  4. 4Department of Public Health, Section of Biostatistics, University of Copenhagen, Copenhagen, Denmark
  5. 5Department of Clinical Medicine, Section of Neurology, Psychiatry and Sensory Sciences, The University of Copenhagen, Copenhagen, Denmark
  1. Correspondence to K Piil; Karin.piil{at}rh.regionh.dk

Abstract

Introduction High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions.

Method and analysis This study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of this paper was to describe the design of an upcoming study. Interviews with 30 patients and 30 caregivers will provide information about how the life situation is experienced during the first year after being diagnosed with HGG. Quantitative measurements of quality of life, well-being and physical activity will provide additional information. More precisely, both qualitative and quantitative data will support the planning of the programme regarding the type of intervention(s), with or without supervision, the appropriate time along the trajectory, frequency, localisation, endpoint measurements and eligible patients and/or caregivers.

Ethics and dissemination According to the Research Ethics Committee, approval is not needed for phase I as it is a non-intervention part of the study. Ethical approval of phase II will be sought at the time where the content of the intervention programme has been developed. Dissemination will occur through presentation and findings will be published in peer-reviewed journals.

  • Rehabilitation Medicine

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

https://doi.org/10.1136/bmjopen-2013-003183

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