Skip to main content

Advertisement

SpringerLink
Log in

The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries—a real-world survey of caregivers

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.

Methods

Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).

Results

The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients’ caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).

Conclusions

Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. European Respiratory Society. European Lung White Book. Chapter 19: Lung cancer. Available at: http://www.erswhitebook.org. Accessed Mar 2017

  2. Ferlay J, Steliarova E, Lortet-Tieulent J et al (2013) Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012. Eur J Cancer 49:1374–1403

    Article  CAS  PubMed  Google Scholar 

  3. Navada S, Lai P, Schwartz AG et al (2006) Temporal trends in small cell lung cancer: analysis of the national Surveillance Epidemiology and End-Results (SEER) database. J Clin Oncol 24(18S):Suppl:384S

    Google Scholar 

  4. Sher T, Dy GK, Adjei AA (2008) Small cell lung cancer. Mayo Clin Proc 83:355–367

    Article  CAS  PubMed  Google Scholar 

  5. Borges EL, Franceschini J, Degani Costa LH et al (2017) Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol 43:18–23

    Article  PubMed  PubMed Central  Google Scholar 

  6. Grant M, Sun V, Fujinami R, Sidhu R, Otis-Green S, Juarez G, Klein L, Ferrell B (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncol Nurs Forum 40:337–346

    Article  PubMed  PubMed Central  Google Scholar 

  7. Iyer S, Taylor-Stokes G, Roughley A (2013) Symptom burden and quality of life in advanced non-small cell lung cancer patients in France and Germany. Lung Cancer 81:288–293

    Article  PubMed  Google Scholar 

  8. Iyer S, Roughley A, Rider A, Taylor-Stokes G (2014) The symptoms burden of non-small cell lung cancer in the USA: a real-world cross-sectional study. Support Care Cancer 22:181–187

    Article  PubMed  Google Scholar 

  9. Linnet H, Hansen O, Meldgaard P, Berdeaux G, Mercier F (2015) Health related quality of life of caregivers and patients treated for metastatic non-small cell lung cancer (NSCLC) with oral vinorelbine. Value Health 18:A473

    Article  Google Scholar 

  10. Migliorino MR, Santo A, Romano G, Cortinovis D, Galetta D, Alabiso O, Cartenì G, Vari S, Fasola G, Pazzola A, Giuffrida D, Zaniboni A, Caprioli A, Longo F, Acciai V, de Marinis F (2017) Economic burden of patients affected by non-small cell lung cancer (NSCLC): the LIFE study. J Cancer Res Clin Oncol 143:783–791

    Article  PubMed  Google Scholar 

  11. Rolke HB, Bakke PS, Gallefoss F (2008) Health related quality of life, mood disorders and coping abilities in an unselected sample of patients with primary lung cancer. Respir Med 102:1460–1467

    Article  PubMed  Google Scholar 

  12. Walker MS, Pohl GM, Houts AC, et al (2017) Analysis of the psychological impact of cancer-related symptoms on patients with non-small cell lung cancer. Psychooncology 26(6):755–762

  13. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311:1052–1060

    Article  CAS  PubMed  Google Scholar 

  14. Lynch SH, Shuster G, Lobo ML (2017) The family caregiver experience – examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes. Aging Ment Health 16:1–8

  15. May CR, Cummings A, Myall M, Harvey J, Pope C, Griffiths P, Roderick P, Arber M, Boehmer K, Mair FS, Richardson A (2016) Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease? BMJ Open 6:e011694

    Article  PubMed  PubMed Central  Google Scholar 

  16. Fujinami R, Otis-Green S, Klein L et al (2013) Quality of life of family caregivers: challenges faced in care of the lung cancer patient. Clin J Oncol Nurs 16:E210–E220

    Article  Google Scholar 

  17. Jassem J, Penrod JR, Goren A, Gilloteau I (2015) Caring for relatives with lung cancer in Europe: an evaluation of caregivers’ experience. Qual Life Res 24:2843–2852

    Article  PubMed  Google Scholar 

  18. Hendriksen E, Williams E, Sporn N, Greer J, DeGrange A, Koopman C (2015) Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers. Support Care Cancer 23:1035–1041

    Article  PubMed  Google Scholar 

  19. Courtin E, Jemiai N, Mossialos E (2014) Mapping support policies for informal carers across the European Union. Health Policy 118:84–94

    Article  PubMed  Google Scholar 

  20. Gysels M, Evans N, Menaca A et al (2012) Culture and end of life care: a scoping exercise in seven European countries. PLoS One 7:e34188

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Menaca A, Evans N, Andrew EV et al (2012) End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal. Crit Rev Oncol Hematol 82:387–401

    Article  PubMed  Google Scholar 

  22. Verbakel E (2018) How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms. Scand J Public Health 46:436–447

    Article  PubMed  Google Scholar 

  23. EuroQol Research Foundation. EQ-5D Instruments. Available at: https://euroqol.org/eq-5d-instruments/. Accessed Sept 2017

  24. Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20:649–655

    Article  CAS  Google Scholar 

  25. Reilly MC, Zbrozek AS, Dukes EM (1993) The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics 4:353–365

    Article  CAS  Google Scholar 

  26. Schreiner AS, Morimoto T, Arai Y, Zarit S (2006) Assessing family caregiver’s mental health using a statistically derived cut-off for the Zarit Burden Interview. Aging Ment Health 10:107–111

    Article  CAS  PubMed  Google Scholar 

  27. StataCorp. (2015) Stata Statistical Software: Release 14. College Station: StataCorp LP

  28. Higginson IJ, Gao W (2008) Caregiver assessment of patients with advanced cancer: concordance of patients, effect of burden and positivity. Health Qual Life Outcomes 6:42

    Article  PubMed  PubMed Central  Google Scholar 

  29. Sarmento VP, Gysels M, Higginson IJ, Gomes B (2017) Home palliative care works: but how? A metaethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care 7(4):0. https://doi.org/10.1136/bmjspcare-2016-001141

  30. OECD. Part-time employment rate. Available at: https://data.oecd.org/emp/part-time-employment-rate.htm#indicator-chart. Accessed Sept 2017

  31. Grover S, Nehra R, Malhotra R et al (2017) Positive aspects of caregiving experience among caregivers of patients with dementia. East Asian Arch Psychiatry 27:71–78

    CAS  PubMed  Google Scholar 

  32. Li Q, Loke AY (2013) The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology 22:2399–2407

    Article  PubMed  Google Scholar 

  33. Mulhern B, Feng Y, Shah K, et al. Comparing the UK EQ-5D-3L and the English EQ-5D-5L value sets. Office of Health Economics Research Available at: https://www.ohe.org/publications/comparing-uk-eq-5d-3l-and-english-eq-5d-5l-value-sets. Accessed Apr 2017

  34. Wong RK, Drossman DA, Weinland SR, Morris CB, Leserman J, Hu Y, Kelapure R, Bangdiwala SI (2013) Partner burden in irritable bowel syndrome. Clin Gastroenterol Hepatol 11:151–155

    Article  PubMed  Google Scholar 

  35. Grun D, Pieri V, Vaillant M, Diederich NJ (2016) Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc 17:626–632

    Article  PubMed  Google Scholar 

  36. Nguyen DI, Chao D, Ma G, Morgan T (2015) Quality of life and factors predictive of burden among primary caregivers of chronic liver disease patients. Ann Gastroenterol 28:124–129

    PubMed  PubMed Central  Google Scholar 

  37. Reed C, Belger M, Dell’agnello G et al (2014) Caregiver burden in Alzheimer’s disease: differential associations in adult-child and spousal caregivers in the GERAS observational study. Dement Geriatr Cogn Dis Extra 4:51–64

    Article  PubMed  PubMed Central  Google Scholar 

  38. Verbakel E, Tamlagsronning S, Winstone L et al (2017) Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinant of health. Eur J Pub Health 27:90–95

    Article  Google Scholar 

  39. Dujardin C, Farfan-Portet MO, Mitchell R et al (2011) Does country influence the health burden of informal care? An international comparison between Belgium and Great Britain. Soc Sci Med 73:1123–1132

    Article  PubMed  Google Scholar 

  40. Boele FW, Given CW, Given BA, Donovan HS, Schulz R, Weimer JM, Drappatz J, Lieberman FS, Sherwood PR (2017) Family caregivers’ level of mastery predicts survival of patients with glioblastoma: a preliminary report. Cancer 123:832–840

    Article  CAS  PubMed  Google Scholar 

  41. Litzelman K, Yabroff R (2015) How are spousal depressed mood, distress and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample. Cancer Epidemiol Biomark Prev 24:969–977

    Article  Google Scholar 

  42. Dionne-Odom JN, Hull JG, Martin MY, Lyons KD, Prescott AT, Tosteson T, Li Z, Akyar I, Raju D, Bakitas MA (2016) Associations between advanced cancer patients’ survival and family caregiver presence and burden. Cancer Med 5:853–862

    Article  PubMed  PubMed Central  Google Scholar 

  43. Jacobs JM, Shaffer KM, Nipp RD, Fishbein JN, MacDonald J, el-Jawahri A, Pirl WF, Jackson VA, Park ER, Temel JS, Greer JA (2017) Distress is interdependent in patients and caregivers with newly diagnosed incurable cancers. Ann Behav Med 51:519–531

    Article  PubMed  PubMed Central  Google Scholar 

  44. Tan JY, Molassiotis A, Lloyd-Williams et al (2018) Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: an exploratory study. Eur J Cancer Care (Engl) 27(1). https://doi.org/10.1111/ecc.12691

Download references

Acknowledgements

Editorial support was provided by Dr. Tracey Lonergan (High Peak Communications) funded by Bristol-Myers Squibb.

Financial support

This research was funded by Bristol-Myers Squibb.

Author information

Authors and Affiliations

  1. Adelphi Real World, Bollington, UK

    R. Wood & G. Taylor-Stokes

  2. Bristol-Myers Squibb, Rueil-Malmaison, Paris, France

    M. Lees

Authors
  1. R. Wood
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. G. Taylor-Stokes
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. M. Lees
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to R. Wood.

Ethics declarations

The study protocol was approved by a central Institutional Review Board (Freiburg Ethics Commission International—Ref 015/1196).

Conflict of interest

Robert Wood and Gavin Taylor-Stokes are employees of Adelphi Real World, a consultancy to the health insurance and life science industries. Michael Lees was an employee of Bristol Myers Squibb, the sponsor of this research and a global biopharmaceutical company that researches and develops medicines for NSCLC, at the time the study was conducted.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Wood, R., Taylor-Stokes, G. & Lees, M. The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries—a real-world survey of caregivers. Support Care Cancer 27, 1709–1719 (2019). https://doi.org/10.1007/s00520-018-4419-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-018-4419-3

Keywords

Search

Navigation