Supportive Care in Cancer

, Volume 27, Issue 5, pp 1709–1719 | Cite as

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

  • R. WoodEmail author
  • G. Taylor-Stokes
  • M. Lees
Original Article



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


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).


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).


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


Caregiver burden Lung cancer Quality of life Work productivity Anxiety Depression 



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.

Compliance with ethical standards

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.


  1. 1.
    European Respiratory Society. European Lung White Book. Chapter 19: Lung cancer. Available at: Accessed Mar 2017
  2. 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 49:1374–1403CrossRefGoogle Scholar
  3. 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:384SGoogle Scholar
  4. 4.
    Sher T, Dy GK, Adjei AA (2008) Small cell lung cancer. Mayo Clin Proc 83:355–367CrossRefGoogle Scholar
  5. 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 43:18–23CrossRefGoogle Scholar
  6. 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 40:337–346CrossRefGoogle Scholar
  7. 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 81:288–293CrossRefGoogle Scholar
  8. 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 22:181–187CrossRefGoogle Scholar
  9. 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:A473CrossRefGoogle Scholar
  10. 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 143:783–791CrossRefGoogle Scholar
  11. 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 102:1460–1467CrossRefGoogle Scholar
  12. 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):755–762Google Scholar
  13. 13.
    Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311:1052–1060CrossRefGoogle Scholar
  14. 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 16:1–8Google Scholar
  15. 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:e011694CrossRefGoogle Scholar
  16. 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–E220CrossRefGoogle Scholar
  17. 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 24:2843–2852CrossRefGoogle Scholar
  18. 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 23:1035–1041CrossRefGoogle Scholar
  19. 19.
    Courtin E, Jemiai N, Mossialos E (2014) Mapping support policies for informal carers across the European Union. Health Policy 118:84–94CrossRefGoogle Scholar
  20. 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:e34188CrossRefGoogle Scholar
  21. 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 82:387–401CrossRefGoogle Scholar
  22. 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 46:436–447CrossRefGoogle Scholar
  23. 23.
    EuroQol Research Foundation. EQ-5D Instruments. Available at: Accessed Sept 2017
  24. 24.
    Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20:649–655CrossRefGoogle Scholar
  25. 25.
    Reilly MC, Zbrozek AS, Dukes EM (1993) The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics 4:353–365CrossRefGoogle Scholar
  26. 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 10:107–111CrossRefGoogle Scholar
  27. 27.
    StataCorp. (2015) Stata Statistical Software: Release 14. College Station: StataCorp LPGoogle Scholar
  28. 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 6:42CrossRefGoogle Scholar
  29. 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.
  30. 30.
    OECD. Part-time employment rate. Available at: Accessed Sept 2017
  31. 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 27:71–78Google Scholar
  32. 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 22:2399–2407CrossRefGoogle Scholar
  33. 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: Accessed Apr 2017
  34. 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 11:151–155CrossRefGoogle Scholar
  35. 35.
    Grun D, Pieri V, Vaillant M, Diederich NJ (2016) Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc 17:626–632CrossRefGoogle Scholar
  36. 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 28:124–129Google Scholar
  37. 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 4:51–64CrossRefGoogle Scholar
  38. 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 27:90–95CrossRefGoogle Scholar
  39. 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 73:1123–1132CrossRefGoogle Scholar
  40. 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 123:832–840CrossRefGoogle Scholar
  41. 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 24:969–977CrossRefGoogle Scholar
  42. 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 5:853–862CrossRefGoogle Scholar
  43. 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 51:519–531CrossRefGoogle Scholar
  44. 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).

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Adelphi Real WorldBollingtonUK
  2. 2.Bristol-Myers SquibbParisFrance

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