Quality of Life Measures in Caregivers of Patients with Cancer

  • E. K. Grov
  • A. A. Dahl


Many kinds of tasks and considerable responsibility are put on informal (family) caregivers when impaired cancer patients stay at home during their illness trajectory. The roles and functions of caregivers vary depending on the demands required from the patient and the family situation, but regularly the caregiver situation has five areas of challenge: physical, psychological, social, spiritual and financial. Caregivers’ coping with these challenges in turn influences their quality of life (QOL). In this chapter we review measures that concern caregiving of adult patients, have been published in English, and that cover at least four of the five areas of challenge. We consider caregiver “burden” and “need” as aspects of QOL, and do not considered measures that focus only on “burden” or “need.” Based on these selection criteria, we review six measures: The Caregiver Quality of Life Index – Cancer Scale, The Caregiver Reaction Assessment, The Quality of Life in Life-Threatening Illness – Family Carer Version, The Measurement of Objective Burden and of Subjective Burden, and Bakas Caregiving Outcomes Scale. The reliability and validity data of these scales are presented as well as data of their coverage, format and  feasibility. The measures vary considerably in these regards, and all of them have their merits. The choice between these measures for the clinic or for research has to be guided by purpose, manpower and design considerations.


Informal Caregiver Subjective Burden Objective Burden Caregiver Strain Index Caregiver Quality 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:


activities of daily living


Bakas Caregiver Outcome Scale


The Cancer Quality of Life Index-Cancer Scale


The Caregiver Reaction Assessment


The Caregiver Strain Index


The Measurement of Objective Burden and of Subjective Burden


quality of life


The Quality of life in life-threatening illness – Family carer version


  1. Andershed B, Ternestedt BM. (1998). Cancer Nurs. 21: 106–116.PubMedCrossRefGoogle Scholar
  2. Bachner YG, O’Rourke N, Carmel S. (2007). J Palliat Care. 23: 80–86.PubMedGoogle Scholar
  3. Bakas T, Champion V. (1999). Nurs Res. 48: 250–259.PubMedCrossRefGoogle Scholar
  4. Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G. (2007). JCO. 25: 4829–4834.CrossRefGoogle Scholar
  5. Brown MA, Stetz K. (1999). Qual Health Res. 9: 182–197.PubMedCrossRefGoogle Scholar
  6. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J, Eckberg K, Lloyd S, Purl S, Blendowski C, Goodman M, Barnicle M, Stewart I, McHale M, Bonomi P, Kaplan E, Taylor IV S, Thomas jr CR, Harris J. (1993). JCO. 11: 570–579.Google Scholar
  7. Cella DF, Bonomi AE. (1995). Oncology. 9: 47–60.PubMedGoogle Scholar
  8. Cohen R, Leis AM, Kuhl D, Charbooeau C, Ritvo P, Ashbury FD. (2006). Palliat Med. 20: 755–767.PubMedCrossRefGoogle Scholar
  9. Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. (2003). J Pain Symptom Manage. 26: 922–953.PubMedCrossRefGoogle Scholar
  10. Edwards B, Ung L. (2002). Cancer Nurs. 25: 342–349.PubMedCrossRefGoogle Scholar
  11. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. (1999). N Engl J Med. 341: 956–963.PubMedCrossRefGoogle Scholar
  12. Foxall MJ, Gaston-Johansson F. (1996). J Adv Nurs. 24: 915–923.PubMedCrossRefGoogle Scholar
  13. Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ. (2004). Oncol Nurs Forum. 31: 1161–1169.PubMedCrossRefGoogle Scholar
  14. Given B, Sherwood PR. (2006). Semin Oncol Nurs. 22: 43–50.PubMedCrossRefGoogle Scholar
  15. Given BA, Given CW, Kozachik S. (2001). CA Cancer J Clin. 51: 213–231.PubMedCrossRefGoogle Scholar
  16. Given CW, Given B, Stommel M, Collins C, King S, Franklin S. (1992). Res Nurs Health. 15: 271–283.PubMedCrossRefGoogle Scholar
  17. Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz JC. (1993). Health Psychol. 12: 277–285.PubMedCrossRefGoogle Scholar
  18. Glajchen M. (2004). J Suppl Oncol. 2: 145–155.Google Scholar
  19. Glajchen M, Kornblith A, Homel P, Fraidin L, Mauskop A, Portenoy RK. (2005). J Pain Symptom Manag. 29: 245–254.CrossRefGoogle Scholar
  20. Grov EK, Fossa SD, Tonnessen A, Dahl AA. (2006). Psychooncology. 15: 517–527.PubMedCrossRefGoogle Scholar
  21. Haley WE. (2003). J Suppl Oncol. 1: 25–29.Google Scholar
  22. Hileman JW, Lackey NR. (1990). Oncol Nurs Forum. 17: 907–913.PubMedGoogle Scholar
  23. Hoffmann RL, Mitchell AM. (1998). Nurs Forum. 33: 5–11.PubMedCrossRefGoogle Scholar
  24. Kitrungrote L, Cohen MZ. (2006). Oncol Nurs Forum. 33: 625–632.CrossRefGoogle Scholar
  25. Kristjanson LJ, Ashcroft T. (1994). Cancer Nurs. 17: 1–17.PubMedCrossRefGoogle Scholar
  26. Lawton MP, Brody EM. (1969). Gerontology. 9: 179–186.Google Scholar
  27. McCorkle R, Yost LS, Jepson C, Malone D, Baird S, Lusk E. (1993). Psychooncology. 2: 21–32.CrossRefGoogle Scholar
  28. Montgomery RJ, Gonyea JG, Hooyman NR. (1985). Fam Relat. 34: 19–26.CrossRefGoogle Scholar
  29. Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA. (1999). Soc Sci Med. 48: 1259–1269.PubMedCrossRefGoogle Scholar
  30. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. (1990). Gerontology. 30: 583–594.Google Scholar
  31. Robinson BG. (1983). J Gerontol. 38: 344–348.PubMedGoogle Scholar
  32. Schulz R, Beach SR. (1999). JAMA. 282: 2215–2219.PubMedCrossRefGoogle Scholar
  33. Schumacher KL, Stewart BJ, Archbold PG, Dodd MJ, Dibble SL. (2000). Res Nurs Health. 23: 191–203.PubMedCrossRefGoogle Scholar
  34. Snyder C. (2005). In: Lipscomb J, Gotay CC, Snyder C (eds.) Outcomes Assessment in Cancer. Cambridge University Press, Cambridge, pp. 329–345.Google Scholar
  35. Tebb S. (1995). Health Soc Work. 20: 87–92.PubMedGoogle Scholar
  36. Weitzner MA, Jacobsen PB, Wagner H Jr, Friedland J, Cox C. (1999a). Qual Life Res. 8: 55–63.PubMedCrossRefGoogle Scholar
  37. Weitzner MA, McMillan SC, Jacobsen PB. (1999b). J Pain Symptom Manag. 17: 418–428.CrossRefGoogle Scholar
  38. World Health Organization. (1993). Qual Life Res. 2: 153–159.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • E. K. Grov
  • A. A. Dahl

There are no affiliations available

Personalised recommendations