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

doi:10.1007/s00520-016-3112-7

. 2016 Jul;24(7):3011-22.

doi: 10.1007/s00520-016-3112-7. Epub 2016 Feb 15.

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

Florien W Boele¹, Cornelia F van Uden-Kraan^{2

3}, Karen Hilverda¹, Jaap C Reijneveld⁴, Wilmy Cleijne¹, Martin Klein¹, Irma M Verdonck-de Leeuw^{5

6}

Affiliations

¹ Department of Medical Psychology, VU University Medical Center, Amsterdam, Netherlands.
² Department of Otolaryngology - Head & Neck Surgery, VU University Medical Center, De Boelelaan 1118, 1081, Amsterdam, HZ, Netherlands.
³ Clinical Psychology, VU University, Amsterdam, Netherlands.
⁴ Department of Neurology, VU University Medical Center, PO Box 7057, 1007, Amsterdam, MB, Netherlands.
⁵ Department of Otolaryngology - Head & Neck Surgery, VU University Medical Center, De Boelelaan 1118, 1081, Amsterdam, HZ, Netherlands. im.verdonck@vumc.nl.
⁶ Clinical Psychology, VU University, Amsterdam, Netherlands. im.verdonck@vumc.nl.

PMID: 26879825
PMCID: PMC4877415
DOI: 10.1007/s00520-016-3112-7

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

Florien W Boele et al. Support Care Cancer. 2016 Jul.

. 2016 Jul;24(7):3011-22.

doi: 10.1007/s00520-016-3112-7. Epub 2016 Feb 15.

Authors

Florien W Boele¹, Cornelia F van Uden-Kraan^{2

3}, Karen Hilverda¹, Jaap C Reijneveld⁴, Wilmy Cleijne¹, Martin Klein¹, Irma M Verdonck-de Leeuw^{5

6}

Affiliations

¹ Department of Medical Psychology, VU University Medical Center, Amsterdam, Netherlands.
² Department of Otolaryngology - Head & Neck Surgery, VU University Medical Center, De Boelelaan 1118, 1081, Amsterdam, HZ, Netherlands.
³ Clinical Psychology, VU University, Amsterdam, Netherlands.
⁴ Department of Neurology, VU University Medical Center, PO Box 7057, 1007, Amsterdam, MB, Netherlands.
⁵ Department of Otolaryngology - Head & Neck Surgery, VU University Medical Center, De Boelelaan 1118, 1081, Amsterdam, HZ, Netherlands. im.verdonck@vumc.nl.
⁶ Clinical Psychology, VU University, Amsterdam, Netherlands. im.verdonck@vumc.nl.

PMID: 26879825
PMCID: PMC4877415
DOI: 10.1007/s00520-016-3112-7

Abstract

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: Informal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise.

Keywords: Brain tumor; Glioma; Informal caregivers; Preferences; Supportive care needs; eHealth.

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Flowchart of participant inclusion

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References

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[1] Sherwood P, Given B, Given C, Schiffman R, Murman D, Lovely M. Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq. 2004;11:43–53. doi: 10.1111/j.1440-1800.2004.00200.x. - DOI - PubMed

[2] Sherwood P, Given B, Given C, Schiffman R, Murman D, Lovely M. Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq. 2004;11:43–53. doi: 10.1111/j.1440-1800.2004.00200.x. - DOI - PubMed

[3] Mukand JA, Blackinton DD, Dilshad D, Croncoli MG, Lee JJ, Santos BB. Incidence of neurologic deficits and rehabilitation of patients with brain tumors. Am J Phys Med Rehabil. 2001;80:346–350. doi: 10.1097/00002060-200105000-00005. - DOI - PubMed

[4] Mukand JA, Blackinton DD, Dilshad D, Croncoli MG, Lee JJ, Santos BB. Incidence of neurologic deficits and rehabilitation of patients with brain tumors. Am J Phys Med Rehabil. 2001;80:346–350. doi: 10.1097/00002060-200105000-00005. - DOI - PubMed

[5] MR L. Psychosocial implications for the patient with a high-grade glioma. J Neurosci Nurs. 2010;42:104–108. doi: 10.1097/JNN.0b013e3181ce5a34. - DOI - PubMed

[6] MR L. Psychosocial implications for the patient with a high-grade glioma. J Neurosci Nurs. 2010;42:104–108. doi: 10.1097/JNN.0b013e3181ce5a34. - DOI - PubMed

[7] Sterckx W, Coolbrandt A, de Casterle BD, Van den Heede K, Decruyenaere M, Borgenon S, Mees A, Clement P. The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. Eur J Oncol Nurs. 2013;17:107–117. doi: 10.1016/j.ejon.2012.04.006. - DOI - PubMed

[8] Sterckx W, Coolbrandt A, de Casterle BD, Van den Heede K, Decruyenaere M, Borgenon S, Mees A, Clement P. The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. Eur J Oncol Nurs. 2013;17:107–117. doi: 10.1016/j.ejon.2012.04.006. - DOI - PubMed

[9] Grov EK, Fossa SD, Sorebo O, Dahl AA. Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden. Soc Sci Med. 2006;63:2429–2439. doi: 10.1016/j.socscimed.2006.06.008. - DOI - PubMed

[10] Grov EK, Fossa SD, Sorebo O, Dahl AA. Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden. Soc Sci Med. 2006;63:2429–2439. doi: 10.1016/j.socscimed.2006.06.008. - DOI - PubMed

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

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

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