Supportive Care in Cancer

, Volume 25, Issue 1, pp 245–253 | Cite as

The multidimensional burden of informal caregivers in primary malignant brain tumor

  • Eléonore Bayen
  • Florence Laigle-Donadey
  • Myrtille Prouté
  • Khê Hoang-Xuan
  • Marie-Eve Joël
  • Jean-Yves Delattre
Original Article

Abstract

Purpose

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

Methods

Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

Results

ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

Conclusions

IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

Keywords

Malignant brain tumor Informal caregiver Burden Informal care time Zarit burden inventory 

Notes

Acknowledgments

The authors thank the Association pour la Recherche sur les Tumeurs Cérébrales (ARTC) and Bérengère Davin for their support during the study. The first author received research grants from the French Society of Physical Medicine and Rehabilitation (SOFMER, 2012), the Fondation des “Gueules Cassées” (2012), the Caisse Nationale de Solidarité pour l’Autonomie (CNSA, 2013), and the Fondation de France (2014) for the project “Informal care and Neurodisability.” These funding sources were not involved in the study design, the collection, analysis, or interpretation of data, or in the writing of the article.

Compliance with ethical standards

All procedures performed in the present study involving human participants were in accordance with the ethical standards of the national research committee and with the 1964 Helsinki declaration and its later amendments.

Conflict of interest

The authors declare that there is no conflict of interest.

References

  1. 1.
    Louis DN, Ohgaki H, Wiestler OD, et al. (2007) The 2007 WHO classification of tumours of the central nervous system. Acta Neuropathol 114:97–109CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    Institut National de la Statistique et des Etudes Economiques. Enquête Handicap Santé-Aidants Informels (HS-HSA-HSM) (2008) http://www.insee.fr/fr/methodes/default.asp?page =sources/ope-enq-handicap-sante-menages-hsm.htm
  3. 3.
    Lageman SK, Brown PD, Anderson SK, et al. (2015) Exploring primary brain tumor patient and caregiver needs and preferences in brief educational and support opportunities. Support Care Cancer 23(3):851CrossRefPubMedGoogle Scholar
  4. 4.
    Sherwood PR, Cwiklik M, Donovan HS (2016) Neuro-oncology family caregiving: review and directions for future research. CNS Oncol 5:41–48CrossRefPubMedGoogle Scholar
  5. 5.
    Whisenant M (2011) Informal caregiving in patients with brain tumors. Oncol Nurs Forum 38:E373–E381CrossRefPubMedGoogle Scholar
  6. 6.
    Sherwood PR, Given BA, Given CW, et al. (2006) Predictors of distress in caregivers of persons with a primary malignant brain tumor. Res Nurs Health 29:105–120CrossRefPubMedGoogle Scholar
  7. 7.
    Keir ST, Guill AB, Carter KE, Friedman HS (2006) Stress and intervention preferences of patients with brain tumors. Support Care Cancer 14:1213–1219CrossRefPubMedGoogle Scholar
  8. 8.
    Madsen K, Poulsen HS (2010) Needs for everyday life support for brain tumour patients’ relatives: systematic literature review. Eur J Cancer Care (Engl) 20:33–43CrossRefGoogle Scholar
  9. 9.
    Sherwood PR, Donovan HS, Given CW, et al. (2008) Predictors of employment and lost hours from work in cancer caregivers. Psychooncology 17:598–605CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Ford E, Catt S, Chalmers A, Fallowfield L (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro-Oncology 14:392–404CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM (2003) Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manag 26:922–953CrossRefGoogle Scholar
  12. 12.
    Harvey K, Catty J, Langman A, et al. (2008) A review of instruments developed to measure outcomes for carers of people with mental health problems. Acta Psychiatr Scand 117:164–176CrossRefPubMedGoogle Scholar
  13. 13.
    Kinsella G, Cooper B, Picton C, Murtagh D (1998) A review of the measurement of caregiver and family burden in palliative care. J Palliat Care 14:37–45PubMedGoogle Scholar
  14. 14.
    Sterckx W, Coolbrandt A, Clement P, et al. (2015) Living with a high-grade glioma: a qualitative study of patients’ experiences and care needs. Eur J Oncol Nurs 19:383–390CrossRefPubMedGoogle Scholar
  15. 15.
    Moore G, Collins A, Brand C, et al. (2013) Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns 91:141–153CrossRefPubMedGoogle Scholar
  16. 16.
    Heese O, Vogeler E, Martens T, et al. (2013) End-of-life caregivers’ perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey. Neuro-Oncology 15:1251–1256CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Finocchiaro CY, Petruzzi A, Lamperti E, et al. (2012) The burden of brain tumor: a single-institution study on psychological patterns in caregivers. J Neuro-Oncol 107:175–181CrossRefGoogle Scholar
  18. 18.
    Janda M, Steginga S, Langbecker D, Dunn J, Walker D, Eakin E (2007) Quality of life among patients with a brain tumor and their carers. J Psychosom Res 63:617–623CrossRefPubMedGoogle Scholar
  19. 19.
    Halkett GK, Lobb EA, Oldham L, Nowak AK (2010) The information and support needs of patients diagnosed with high grade glioma. Patient Educ Couns 79:112–119CrossRefPubMedGoogle Scholar
  20. 20.
    Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14:1094–1103CrossRefPubMedGoogle Scholar
  21. 21.
    Parvataneni R, Polley MY, Freeman T, et al. (2011) Identifying the needs of brain tumor patients and their caregivers. J Neuro-Oncol 104:737–744CrossRefGoogle Scholar
  22. 22.
    Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncology 10:61–72CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Zarit SH, Todd PA, Zarit JM (1986) Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26:260–266CrossRefPubMedGoogle Scholar
  24. 24.
    Braithwaite V (1992) Caregiving burden: making the concept scientifically useful and policy relevant. Res Aging 14:3–27CrossRefGoogle Scholar
  25. 25.
    Koopmanschap M, Van Exel J, Van den Berg B, Brouwer W (2008) An overview of methods and application to value informal Care in Economic Evaluations of healthcare. PharmacoEconomics 26:269–280CrossRefPubMedGoogle Scholar
  26. 26.
    Brouwer WB, van Exel NJ, Koopmanschap MA, Rutten FF (1999) The valuation of informal care in economic appraisal. A consideration of individual choice and societal costs of time. Int J Technol Assess Health Care 15:147–160CrossRefPubMedGoogle Scholar
  27. 27.
    Vecchio N, Cybinski P, Stevens S (2008) The effect of disability on the needs of caregivers. Int J of Social Economics. 782.Google Scholar
  28. 28.
    Schag CC, Heinrich RL, Ganz PA (1984) Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncol 2:187–193PubMedGoogle Scholar
  29. 29.
    Mahoney FI, Barthel DW (1965) Functional evaluation: the Barthel index. Md State Med J 14:61–65PubMedGoogle Scholar
  30. 30.
    Vanier M, Mazaux JM, Lambert J, Dassa C, Levin HS (2000) Assessment of neuropsychologic impairments after head injury: interrater reliability and factorial and criterion validity of the neurobehavioral rating scale-revised. Arch Phys Med Rehabil 81:796–806PubMedGoogle Scholar
  31. 31.
    Ware J Jr, Kosinski M, Keller SD (1996) A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care 34:220–233CrossRefPubMedGoogle Scholar
  32. 32.
    Dalgard OS (2009) Social support - Occurrence. In: EUPHIX E, ed. EUPHIX, EUphact Bilthoven: RIVM, <http://wwweuphixorg > EUphact\ Determinants of health\ Environment\ Social support Google Scholar
  33. 33.
    Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20:649–655CrossRefPubMedGoogle Scholar
  34. 34.
    Rankin ED, Haut MW, Keefover RW, Franzen MD (1994) The establishment of clinical cutoffs in measuring caregiver burden in dementia. Gerontologist 34:828–832CrossRefPubMedGoogle Scholar
  35. 35.
    Wimo A, Winblad B (2003) Ressource utilization in dementia: RUD lite. Brain Aging 3:47–58Google Scholar
  36. 36.
    Décret relatif à la prestation de compensation à domicile pour les personnes handicapées (2005) Décret n° 2005–1591 du 19 décembre 2005 relatif à la prestation de compensation à domicile pour les personnes handicapées. Journal Officiel de la République Française.Google Scholar
  37. 37.
    McDaid D (2001) Estimating the costs of informal care for people with Alzheimer’s disease: methological and practical challenges. Int J Geriatr Psychiatry 16:400–405CrossRefPubMedGoogle Scholar
  38. 38.
    Décret n (2013)° 2013–1190 du 19 décembre 2013 portant relèvement du salaire minimum de croissance Journal Officiel de la République Française du 20 décembre 2013 ;0295(Texte n°43):20809.Google Scholar
  39. 39.
    Ananian S, Demailly D, Pons Y (2014) Allègements et autres dispositifs dérogatoires portant sur les cotisations sociales patronales: une analyse empirique dans les entreprises de 10 salariés ou plus du secteur privé en 2010. Document d’études DARES. n°186.Google Scholar
  40. 40.
    Keir ST, Guill AB, Carter KE, Boole LC, Gonzales L, Friedman HS (2006) Differential levels of stress in caregivers of brain tumor patients-observations from a pilot study. Support Care Cancer 14:1258–1261CrossRefPubMedGoogle Scholar
  41. 41.
    Adelbratt S, Strang P (2000) Death anxiety in brain tumour patients and their spouses. Palliat Med 14:499–507CrossRefPubMedGoogle Scholar
  42. 42.
    Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Educ Couns 71:251–258CrossRefPubMedGoogle Scholar
  43. 43.
    Jackson D, Turner-Stokes L, Murray J, Leese M, McPherson KM (2009) Acquired brain injury and dementia: a comparison of carer experiences. Brain Inj 23:433–444CrossRefPubMedGoogle Scholar
  44. 44.
    Li C, Zeliadt SB, Hall IJ, et al. (2013) Burden among partner caregivers of patients diagnosed with localized prostate cancer within 1 year after diagnosis: an economic perspective. Support Care Cancer 21:3461–3469CrossRefPubMedPubMedCentralGoogle Scholar
  45. 45.
    Ll Wood R, Alderman N, Williams C (2008) Assessment of neurobehavioural disability: a review of existing measures and recommendations for a comprehensive assessment tool. Brain Inj 22:905–918CrossRefPubMedGoogle Scholar
  46. 46.
    Peters KB, West MJ, Hornsby WE, et al. (2014) Impact of health-related quality of life and fatigue on survival of recurrent high-grade glioma patients. J Neuro-Oncol 120:499–506CrossRefGoogle Scholar
  47. 47.
    Blondel F, Delzescaux S, Fermon B (2009) Mesure de la qualité et qualité de la mesure de l’aide au domicile - Construction des points de vue sur la qualité de l’aide à domicile. Rapport post Appel à projet MIRe-DREES-CNSA Google Scholar
  48. 48.
    Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75 discussion 75CrossRefPubMedGoogle Scholar
  49. 49.
    Newberry A, Kuo J, Donovan H, et al. (2012) Identifying family members who are likely to perceive benefits from providing care to a person with a primary malignant brain tumor. Oncol Nurs Forum 39:E226–E232CrossRefPubMedPubMedCentralGoogle Scholar
  50. 50.
    Sizoo EM, Braam L, Postma TJ, et al. (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro-Oncology 12:1162–1166CrossRefPubMedPubMedCentralGoogle Scholar
  51. 51.
    Bayen E, Jourdan C, Ghout I, et al. (2014) Objective and subjective burden of informal caregivers 4 years after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma RehabilGoogle Scholar
  52. 52.
    Bayen E, Papeix C, Pradat-Diehl P, Lubetzki C, Joël ME (2015) Patterns of objective and subjective burden of informal caregivers of patients with multiple sclerosis Behav Neurol. May 20. 2015Google Scholar
  53. 53.
    Gustavsson A, Svensson M, Jacobi F, et al. (2011) Cost of disorders of the brain in Europe 2010. Eur Neuropsychopharmacol 21:718–779CrossRefPubMedGoogle Scholar
  54. 54.
    Bradley SE, Sherwood PR, Kuo J, et al. (2009) Perceptions of economic hardship and emotional health in a pilot sample of family caregivers. J Neuro-Oncol 93:333–342CrossRefGoogle Scholar
  55. 55.
    NICE (2006) Improving outcome for people with brain and other CNS tumours. London: National Institute of Health and Clinical Excellence. http://www.nice.org.uk/csgbraincns.
  56. 56.
    Cashman R, Bernstein LJ, Bilodeau D, et al. (2007) Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma. Can Oncol Nurs J 17:6–15CrossRefPubMedGoogle Scholar
  57. 57.
    Boele FW, Hoeben W, Hilverda K, et al. (2013) Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trial. J Neuro-Oncol 111:303–311CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Eléonore Bayen
    • 1
    • 2
  • Florence Laigle-Donadey
    • 3
  • Myrtille Prouté
    • 2
  • Khê Hoang-Xuan
    • 3
    • 4
    • 5
    • 6
  • Marie-Eve Joël
    • 2
  • Jean-Yves Delattre
    • 3
    • 4
    • 5
    • 6
  1. 1.Department of Neuro-RehabilitationPitié-Salpêtrière HospitalParisFrance
  2. 2.Health Economics Department LEDa-LEGOSPSL University Paris-DauphineParisFrance
  3. 3.Department of Neuro-OncologyPitié-Salpêtrière HospitalParisFrance
  4. 4.Sorbonne University UPMC Paris 06, CRICMParisFrance
  5. 5.INSERM U1127ParisFrance
  6. 6.CNRS, UMR 7225ParisFrance

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