Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer
Florien W BoeleIrma M Verdonck-de Leeuw

Abstract

Glioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients' and caregivers' attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options. In total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently. Advantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments. I...Continue Reading

References

May 1, 2001·American Journal of Physical Medicine & Rehabilitation·J A MukandB B Santos
Feb 14, 2004·Nursing Inquiry·Paula SherwoodMary Lovely
Jun 9, 2004·CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne·Eva GrunfeldRobert Glossop
Sep 18, 2007·International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care·Allison TongJonathan Craig
Jan 1, 2008·Arthritis and Rheumatism·Jennifer N StinsonBrian M Feldman
Apr 7, 2009·International Journal of Medical Informatics·J M Christian Bastien
May 8, 2009·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Elizabeth A KvaleL B Nabors
Feb 16, 2010·Journal of Pain and Symptom Management·Astrid ErharterBernhard Holzner
Apr 29, 2010·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Michele R Lucas
Apr 29, 2010·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Claire F SnyderAlbert W Wu
Dec 14, 2011·Journal of Medical Internet Research·Julia E W C van Gemert-PijnenErwin R Seydel
Mar 8, 2012·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Ingrid C CnossenIrma M Verdonck-de Leeuw
May 16, 2012·Annals of Behavioral Medicine : a Publication of the Society of Behavioral Medicine·Chien-Wen J ChoiPaula R Sherwood
Jun 5, 2012·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·Wendy SterckxPaul Clement
Dec 3, 2013·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Alasdair G RooneyRobin Grant
Jun 9, 2015·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·K PiilM Jarden
Oct 23, 2015·Journal of Medical Internet Research·Sanne Duman-LubberdingIrma M Verdonck-de Leeuw

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Citations

Mar 31, 2017·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Bettina SeekatzBirgitt van Oorschot
Feb 14, 2020·Neurological Sciences : Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology·Milena PertzPatrizia Thoma

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