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

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' attit...

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Publicado en:Supportive Care in Cancer Vol. 24; no. 7; pp. 3011 - 3023
Autores principales: Boele, Florien, Uden-Kraan, Cornelia, Hilverda, Karen, Reijneveld, Jaap, Cleijne, Wilmy, Klein, Martin, Verdonck-de Leeuw, Irma, Boele, Florien W, van Uden-Kraan, Cornelia F, Reijneveld, Jaap C, Verdonck-de Leeuw, Irma M
Formato: Journal Article
Publicado: Springer Nature Jul2016
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jul2016
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      pub: Springer Nature
      place: New York, New York
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        10.1007/s00520-016-3112-7
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        atl: Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers.
      aug:
        au:
          Boele, Florien
          Uden-Kraan, Cornelia
          Hilverda, Karen
          Reijneveld, Jaap
          Cleijne, Wilmy
          Klein, Martin
          Verdonck-de Leeuw, Irma
          Boele, Florien W
          van Uden-Kraan, Cornelia F
          Reijneveld, Jaap C
          Verdonck-de Leeuw, Irma M
        affil: Department of Medical Psychology, VU University Medical Center, Amsterdam Netherlands
      sug:
        subj:
          Brain Neoplasms Psychosocial Factors
          Glioma Psychosocial Factors
          Caregivers Psychosocial Factors
          Quality of Life Psychosocial Factors
          Middle Age
          Aged
          Adult
          Male
          Attitude
          Female
          Ferrans and Powers Quality of Life Index
          Personal Resource Questionnaire
          Questionnaires
          Middle Aged: 45-64 years
          Aged: 65+ years
          Adult: 19-44 years
          Male
          Female
      ab: 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.
      pubtype: Academic Journal
      doctype: Journal Article
      ougenre: Article
    language: English
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