CarerQol instrument

CarerQol instrument

The CarerQol-7D comprises five negative and two positive dimensions of providing informal care, derived from a literature review of subjective burden measures (Brouwer et al., 2006). The five negative dimensions are

(i) relational problems;
(ii) mental health problems;
(iii) problems combining daily activities with care; (iv) financial problems; and
(v) physical health problems.

The two positive dimensions are
(i) fulfilment from caregiving; and
(ii) support with lending care.

Respondents are asked to indicate whether an item applies to them with three possible responses:
(i) no;
(ii) some; and
(iii) a lot.

The combination of items and answering categories potentially distinguishes 2,187 caregiving situations.

Answers on the negative dimensions of the CarerQol-7D receive a value of 0 (a lot), 1 (some) or 2 (no); answers on the positive dimensions receive a value of 0 (no), 1 (some), or 2 (a lot). Summing the values for the seven dimensions, a score of 0 translates into the worst informal care situation (a lot of problems and no support or fulfilment); the higher the score, the better the care situation. A weighted sum score of the CarerQol-7D, based on preferences of the general public, can also be calculated (see under ‘Valuation sets’).

User conditions

The CarerQol is available for use without prior permission from the authors. Its use is the responsibility of the researcher. Please reference the use of this document in any publication:

Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006 Aug;15(6):1005-21.

Comments or questions can be directed to carerqol@imta.nl.

Related publications

  1. Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006 Aug;15(6):1005-21. [view]
  2. Hoefman RJ, van Exel NJ, Foets M, Brouwer WB. Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care. Aging Ment Health. 2011 Nov;15(8):1018-27. [view]
  3. Payakachat N, Tilford JM, Brouwer WB, van Exel NJ, Grosse SD. Measuring health and well-being effects in family caregivers of children with craniofacial malformations. Qual Life Res. 2011 Nov;20(9):1487-95. [view]
  4. Hoefman RJ, van Exel NJ, Looren de Jong S, Redekop WK, Brouwer WB. A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving. Qual Life Res. 2011 Aug;20(6):875-87. [view]
  5. Pangalila RF, van den Bos GA, Stam HJ, van Exel NJ, Brouwer WB, Roebroeck ME. Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy. Disabil Rehabil. 2012;34(12):988-96. [view]
  6. Flyckt L, Löthman A, Jörgensen L, Rylander A, Koernig T. Burden of informal care giving to patients with psychoses: a descriptive and methodological study. Int J Soc Psychiatry. 2013 Mar;59(2):137-46. [view]
  7. Hoefman RJ, van Exel J, Brouwer WB. Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument. Health Qual Life Outcomes. 2013 Oct 21;11:173. doi: 10.1186/1477-7525-11-173. [view]
  8. Kanters TA, van der Ploeg AT, Brouwer WB, Hakkaart L. The impact of informal care for patients with Pompe disease: an application of the CarerQol instrument. Mol Genet Metab. 2013 Nov;110(3):281-6. [view]
  9. Hoefman RJ, van Exel J, Rose JM, van de Wetering EJ, Brouwer WB. A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Med Decis Making. 2014 Jan;34(1):84-96. [view]
  10. DeKoven M, Karkare S, Kelley LA, Cooper DL, Pham H, Powers J, Lee WC, Wisniewski T. Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States. Haemophilia. 2014 Jul;20(4):541-9. [view]
  11. Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J. The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care. J Alzheimers Dis. 2014;40(3):631-42. [view]
  12. Stjernswärd S, Hansson L. A web-based supportive intervention for families living with depression: content analysis and formative evaluation. JMIR Res Protoc. 2014 Feb 14;3(1):e8. [view]
  13. Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, Tilford JM. Caring for a child with autism spectrum disorder and parents’ quality of life: application of the CarerQol. J Autism Dev Disord. 2014 Aug;44(8):1933-45. [view]
  14. DeKoven M, Karkare S, Lee WC, Kelley LA, Cooper DL, Pham H, Powers J, Wisniewski T. Impact of haemophilia with inhibitors on caregiver burden in the United States. 2014 Nov;20(6):822-30. [view]
  15. Hoefman R, Al-Janabi H, McCaffrey N, Currow D, Ratcliffe J. Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Qual Life Res. 2015 May;24(5):1255-1273. [view]
  16. Lutomski JE, van Exel NJ, Kempen GI, Moll van Charante EP, den Elzen WP, Jansen AP, Krabbe PF, Steunenberg B, Steyerberg EW, Olde Rikkert MG, Melis RJ. Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Qual Life Res. 2015 May;24(5):1281-1293 [view]
  17. Palmer R, Cooper C, Enderby P, Brady M, Julious S, Bowen A, Latimer N. Clinical and cost effectiveness of computer treatment for aphasia post stroke (Big CACTUS): study protocol for a randomised controlled trial. Trials. 2015 Jan 27;16(1):18. [view]
  18. Kraijo H, Leeuw R, Schrijvers G. How spouses evaluate Nursing Home Placement of their demented partner: a study about the end of perseverance time. Scandinavian journal of caring sciences. 2015 Mar 1;29(1):101-9. [view]
  19. Ament BH, Wolfs CA, Kempen GI, Ambergen T, Verhey FR, De Vugt ME. The benefit of a geriatric nurse practitioner in a multidisciplinary diagnostic service for people with cognitive disorders. BMC research notes. 2015 Jun 4;8(1):217. [view]
  20. Vroomen JM, Bosmans JE, van de Ven PM, Joling KJ, van Mierlo LD, Meiland FJ, van Charante EP, van Hout HP, de Rooij SE. Community-dwelling patients with dementia and their informal caregivers with and without case management: 2-year outcomes of a pragmatic trial. Journal of the American Medical Directors Association. 2015 Sep 1;16(9):800-e1. [view]
  21. Garrido-García S, Sánchez-Martínez FI, Abellán-Perpiñán JM, van Exel J. Monetary valuation of informal care based on carers’ and noncarers’ preferences. Value in Health. 2015 Sep 30;18(6):832-40. [view]
  22. Flyckt L, Fatouros-Bergman H, Koernig T. Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders. International Journal of Social Psychiatry. 2015 Nov;61(7):684-92. [view]
  23. Tilford JM, Payakachat N, Kuhlthau KA, Pyne JM, Kovacs E, Bellando J, Williams DK, Brouwer WB, Frye RE. Treatment for sleep problems in children with autism and caregiver spillover effects. Journal of autism and developmental disorders. 2015 Nov 1;45(11):3613-23. [view]
  24. Verbakel E, Metzelthin SF, Kempen GI. Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences. 2016 Apr 29 [view]
  25. Kerpershoek L, de Vugt M, Wolfs C, Jelley H, Orrel M, Woods B, Stephan A, Bieber A, Meyer G, Engedal K, Selbaek G. Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study. BMC health services research. 2016 Aug 23;16(1):423. [view]
  26. McCaffrey N, Al-Janabi H, Currow D, Hoefman R, Ratcliffe J. Protocol for a systematic review of preference-based instruments for measuring care-related outcomes and their suitability for the palliative care setting. BMJ open. 2016 Sep 1;6(9):e012181. [view]
  27. Janssen EP, de Vugt M, Köhler S, Wolfs C, Kerpershoek L, Handels RL, Orrell M, Woods B, Jelley H, Stephan A, Bieber A. Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health. Aging & Mental Health. 2016 Nov 1:1-9. [view]
  28. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study. BMC geriatrics. 2016 Dec 7;16(1):208. [view]
  29. Hanly P, Maguire R, Balfe M, Hyland P, Timmons A, O’Sullivan E, Butow P, Sharp L. Burden and happiness in head and neck cancer carers: the role of supportive care needs. Supportive Care in Cancer. 2016 Oct 1;24(10):4283-91. [view]
  30. van Dam PH, Achterberg WP, Caljouw MA. Care-Related Quality of Life of Informal Caregivers After Geriatric Rehabilitation. JAMDA. 2016 [view]
  31. Hoefman RJ, van Exel J, Brouwer WB. Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics. 2016 Dec 31:1-0. [view]
  32. Stjernswärd S, Hansson L. Outcome of a web-based mindfulness intervention for families living with mental illness–A feasibility study. Informatics for Health and Social Care. 2017 Jan 2;42(1):97-108 [view]
  33. Duvekot J, Leontine W, Slappendel G, van der Ende J, Verhulst FC, van der Sijde A, Greaves-Lord K. Design and cohort characteristics of the social spectrum study: a multicenter study of the autism spectrum among clinically referred children. Journal of Autism and Developmental Disorders. 2017 Jan 1;47(1):33-48. [view]