Skip to main content
Log in

Coping with a newly diagnosed high-grade glioma: patient-caregiver dyad effects on quality of life

  • Clinical Study
  • Published:
Journal of Neuro-Oncology Aims and scope Submit manuscript

Abstract

Patients with high-grade gliomas (HGG) and their caregivers have to confront a very aggressive disease that produces major lifestyle disruptions. There is an interest in studying the ability of patients and their caregivers to cope with the difficulties that affect quality of life (QoL). We examine, in a sample of patient-caregiver dyads in the specific context of newly diagnosed cases of HGG, whether the QoL of patients and caregivers is influenced by the coping processes they and their relatives use from a specific actor–partner interdependence model (APIM). This cross-sectional study involved 42 dyads with patients having recent diagnoses of HGG and assessed in the time-frame between diagnosis and treatment initiation. The self-reported data included QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology QoL), emotional status, and coping strategies (BriefCope). The APIM was used to test the dyadic effects of coping strategies on QoL. Coping strategies, such as social support, avoidance, and problem solving, exhibited evidence of either an actor effect (degree to which the individual’s coping strategies are associated with their own QoL) or partner effect (degree to which the individual’s coping strategies are associated with the QoL of the other member of the dyad) for patients or caregivers. For positive-thinking coping strategies, actor and partner effect were not observed. This study emphasizes that the QoL for patients and their caregivers was directly related to the coping strategies they used. This finding suggests that targeted interventions should be offered to help patients and their relatives to implement more effective coping strategies.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Davis ME, Stoiber AM (2011) Glioblastoma multiforme: enhancing survival and quality of life. Clin J Oncol Nurs 15:291–297. doi:10.1188/11.CJON.291-297

    Article  PubMed  Google Scholar 

  2. Sherwood P, Given B, Given C, Schiffman R, Murman D, Lovely M (2004) Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq 11:43–53

    Article  PubMed  Google Scholar 

  3. Schmer C, Ward-Smith P, Latham S, Salacz M (2008) When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 40:78–84

    Article  PubMed  Google Scholar 

  4. Catt S, Chalmers A, Fallowfield L (2008) Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncol 9:884–891. doi:10.1016/S1470-2045(08)70230-4

    Article  PubMed  Google Scholar 

  5. Soothill K, Morris SM, Harman JC, Francis B, Thomas C, McIllmurray MB (2001) Informal carers of cancer patients: what are their unmet psychosocial needs?. Health Social Care Community 9: 464–475

    Article  CAS  Google Scholar 

  6. Cavers D, Hacking B, Erridge SC, Morris PG, Kendall M, Murray SA (2013) Adjustment and support needs of glioma patients and their relatives: serial interviews. Psychooncology 22:1299–1305. doi:10.1002/pon.3136

    Article  PubMed  Google Scholar 

  7. Veilleux N, Goffaux P, Boudrias M, Mathieu D, Daigle K, Fortin D (2010) Quality of life in neurooncology—age matters. J Neurosurg 113:325–332. doi:10.3171/2010.2.JNS091707

    Article  PubMed  Google Scholar 

  8. Piil K, Jakobsen J, Christensen KB, Juhler M, Jarden M (2015) Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study. J Neurooncol 124:185–195. doi:10.1007/s11060-015-1821-2

    Article  CAS  PubMed  Google Scholar 

  9. Dirven L, Aaronson NK, Heimans JJ, Taphoorn MJ (2014) Health-related quality of life in high-grade glioma patients. Chin J Cancer 33:40–45. doi:10.5732/cjc.013.10214

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Brown PD, Decker PA, Rummans TA et al (2008) A prospective study of quality of life in adults with newly diagnosed high-grade gliomas: comparison of patient and caregiver ratings of quality of life. Am J Clin Oncol 31:163–168

    Article  PubMed  Google Scholar 

  11. Minaya Flores P, Berbis J, Chinot O, Auquier P (2014) Assessing the quality of life among caregivers of patients with gliomas. Neuro-oncol Pract 1:191–197. doi:10.1093/nop/npu027

    Article  Google Scholar 

  12. Munoz C, Juarez G, Munoz ML, Portnow J, Fineman I, Badie B, Mamelak A, Ferrell B (2008) The quality of life of patients with malignant gliomas and their caregivers. Soc Work Health Care 47:455–478. doi:10.1080/00981380802232396

    Article  PubMed  Google Scholar 

  13. 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 63:617–623. doi:10.1016/j.jpsychores.2007.06.018

    Article  PubMed  Google Scholar 

  14. Folkman S, Moskowitz JT (2000) Positive affect and the other side of coping. Am Psychol 55:647–654

    Article  CAS  PubMed  Google Scholar 

  15. Lazarus M, Folkman S (1984) Stress, appraisal and coping. Springer, New York

    Google Scholar 

  16. Folkman S, Lazarus RS, Gruen RJ, DeLongis A (1986) Appraisal, coping, health status, and psychological symptoms. J Pers Soc Psychol 50:571–579

    Article  CAS  PubMed  Google Scholar 

  17. Holahan CJ, Moos RH (1987) Personal and contextual determinants of coping strategies. J Pers Soc Psychol 52:946–955

    Article  CAS  PubMed  Google Scholar 

  18. Lang DA, Neil-Dwyer G, Garfield J (1999) Outcome after complex neurosurgery: the caregiver’s burden is forgotten. J Neurosurg 91:359–363. doi:10.3171/jns.1999.91.3.0359

    Article  CAS  PubMed  Google Scholar 

  19. Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 10:61–72. doi:10.1215/15228517-2007-040

    Article  PubMed  PubMed Central  Google Scholar 

  20. Baider L, Kaplan De-Nour A (1997) Psychological distress and intrusive thoughts in cancer patients. J Nerv Ment Dis 185:346–348

    Article  CAS  PubMed  Google Scholar 

  21. Cook WL, Kenny DA (2005) The actor-partner interdependence model: a model of bidirectional effects in developmental studies. Int J Behav Dev 29:101–109

    Article  Google Scholar 

  22. Crum RM, Anthony JC, Bassett SS, Folstein MF (1993) Population-based norms for the mini-mental state examination by age and educational level. JAMA 269:2386–2391

    Article  CAS  PubMed  Google Scholar 

  23. Botella M, Zenasni F, Pocard M, Gledill J, Rodary C (2007) French adaptation of the patient generated index: metric characteristics and practical limitations. Psycho-Oncologie 2:131–140

    Article  Google Scholar 

  24. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC et al (1993) The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376

    Article  CAS  PubMed  Google Scholar 

  25. Minaya P, Baumstarck K, Berbis J, Goncalves A, Barlesi F, Michel G, Salas S, Chinot O, Grob JJ, Seitz JF, Bladou F, Clement A, Mancini J, Simeoni MC, Auquier P (2012) The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer 48:904–911. doi:10.1016/j.ejca.2011.09.010

    Article  PubMed  Google Scholar 

  26. Carver CS (1997) You want to measure coping but your protocol’s too long: consider the brief COPE. Int J Behav Med 4:92–100. doi:10.1207/s15327558ijbm0401_6

    Article  CAS  PubMed  Google Scholar 

  27. Muller L, Spitz E (2003) Multidimensional assessment of coping: validation of the Brief COPE among French population. Encephale 29:507–518

    CAS  PubMed  Google Scholar 

  28. Boele FW, Heimans JJ, Aaronson NK, Taphoorn MJ, Postma TJ, Reijneveld JC, Klein M (2013) Health-related quality of life of significant others of patients with malignant CNS versus non-CNS tumors: a comparative study. J Neurooncol 115:87–94. doi:10.1007/s11060-013-1198-z

    Article  PubMed  Google Scholar 

  29. Macartney G, Stacey D, Harrison MB, VanDenKerkhof E (2014) Symptoms, coping, and quality of life in pediatric brain tumor survivors: a qualitative study. Oncol Nurs Forum 41:390–398. doi:10.1188/14.ONF.390-398

    Article  PubMed  Google Scholar 

  30. Edvardsson T, Ahlstrom G (2005) Illness-related problems and coping among persons with low-grade glioma. Psychooncology 14:728–737. doi:10.1002/pon.898

    Article  PubMed  Google Scholar 

  31. Sterckx W, Coolbrandt A, Dierckx de Casterle B, Van den Heede K, Decruyenaere M, Borgenon S, Mees A, Clement P (2013) 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 17:107–117. doi:10.1016/j.ejon.2012.04.006

    Article  PubMed  Google Scholar 

  32. Molassiotis A, Wilson B, Brunton L, Chaudhary H, Gattamaneni R, McBain C (2010) Symptom experience in patients with primary brain tumours: a longitudinal exploratory study. Eur J Oncol Nurs 14:410–416. doi:10.1016/j.ejon.2010.03.001

    Article  PubMed  Google Scholar 

  33. Randall AK, Bodenmann G (2009) The role of stress on close relationships and marital satisfaction. Clin Psychol Rev 29:105–115. doi:10.1016/j.cpr.2008.10.004

    Article  PubMed  Google Scholar 

  34. Vanderwerker LC, Laff RE, Kadan-Lottick NS, McColl S, Prigerson HG (2005) Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899–6907. doi:10.1200/JCO.2005.01.370

    Article  PubMed  PubMed Central  Google Scholar 

  35. Tiemensma J, Kaptein AA, Pereira AM, Smit JW, Romijn JA, Biermasz NR (2011) Coping strategies in patients after treatment for functioning or nonfunctioning pituitary adenomas. J Clin Endocrinol Metab 96:964–971. doi:10.1210/jc.2010-2490

    Article  CAS  PubMed  Google Scholar 

  36. Locke DE, Cerhan JH, Wu W, Malec JF, Clark MM, Rummans TA, Brown PD (2008) Cognitive rehabilitation and problem-solving to improve quality of life of patients with primary brain tumors: a pilot study. J Support Oncol 6:383–391

    PubMed  Google Scholar 

  37. Boele FW, Hoeben W, Hilverda K, Lenting J, Calis AL, Sizoo EM, Collette EH, Heimans JJ, Taphoorn MJ, Reijneveld JC, Klein M (2013) Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trial. J Neurooncol 111:303–311. doi:10.1007/s11060-012-1012-3

    Article  PubMed  Google Scholar 

  38. Lucchiari C, Botturi A, Pravettoni G (2010) The impact of decision models on self-perceived quality of life: a study on brain cancer patients. Ecancermedicalscience 4:187. doi:10.3332/ecancer.2010.187

    CAS  PubMed  PubMed Central  Google Scholar 

  39. Badr H, Carmack CL, Kashy DA, Cristofanilli M, Revenson TA (2010) Dyadic coping in metastatic breast cancer. Health Psychol 29:169–180. doi:10.1037/a0018165

    Article  PubMed  PubMed Central  Google Scholar 

  40. Waldron D, O’Boyle CA, Kearney M, Moriarty M, Carney D (1999) Quality-of-life measurement in advanced cancer: assessing the individual. J Clin Oncol 17:3603–3611

    CAS  PubMed  Google Scholar 

  41. Wettergren L, Kettis-Lindblad A, Sprangers M, Ring L (2009) The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW. Qual Life Res 18:737–746. doi:10.1007/s11136-009-9490-2

    Article  CAS  PubMed  Google Scholar 

  42. Kashy DA, Kenny DA (1999) The analysis of data from dyads and groups. Handbook of research methods in social psychology. Cambridge University Press, New York

    Google Scholar 

  43. Campbell LJ, Kashy DA (2002) Estimating actor, partner, and interaction effects for dyadic data using PROC MIXED and HLM5: a brief guided tour. Pers Relatsh 9:327–342

    Article  Google Scholar 

Download references

Acknowledgments

The authors are grateful to all of the patients and the caregivers for their participation in the study. The authors thank Dominique Figarella (responsible-in-chief of the French Site de Recherche Intégrée sur le Cancer (SIRIC) gliomas program), Dominique David (President of the French Association of gliomas research, Association pour la Recherche sur les Tumeurs Cérébrales Sud-Est), and Céline Bequet (research clinic assistant) for their respective support.

Fundings

This project was funded by the French ‘Site de Recherche Intégrée sur le Cancer (SIRIC) gliomas program’. This work was supported by the National Clinical Research Quality of Life in Oncology Platform labelled by the National Cancer Ligue and the French National Cancer Institute (Grant INCa-DGOS-Inserm 6038).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to K. Baumstarck.

Ethics declarations

Ethics

Regulatory monitoring has been performed in accordance with the French law that requires the approval of the French ethics committee (Comité de Protection des Personnes Sud Méditerranée II, 6/6/2014, reference number 2014-A00585-42).

Conflict of interest

No author of this report had any conflicting or competing interest.

Additional information

O. Chinot and P. Auquier have contributed equally to this work.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (DOCX 37 KB)

Supplementary material 2 (DOCX 174 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Baumstarck, K., Leroy, T., Hamidou, Z. et al. Coping with a newly diagnosed high-grade glioma: patient-caregiver dyad effects on quality of life. J Neurooncol 129, 155–164 (2016). https://doi.org/10.1007/s11060-016-2161-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11060-016-2161-6

Keywords

Navigation