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The Patient - Patient-Centered Outcomes Research

, Volume 10, Issue 5, pp 579–592 | Cite as

Psychometric Validation of the Heart Failure Caregiver Questionnaire (HF-CQ®)

  • Anna Strömberg
  • Nicola Bonner
  • Laura Grant
  • Bryan Bennett
  • Misook L. Chung
  • Tiny Jaarsma
  • Marie Louise Luttik
  • Eldrin F. Lewis
  • Frederico CaladoEmail author
  • Celine Deschaseaux
Original Research Article

Abstract

Background

The Heart Failure Caregiver Questionnaire (HF-CQ®) was developed to assess subjective outcomes of heart failure caregivers. The HF-CQ® comprises 21 questions on three domains, namely physical, emotional/psychological and lifestyle. The objective of this study was to evaluate the psychometric properties of the HF-CQ®.

Methods

Patients (n = 150) with heart failure and their primary caregivers (n = 150) were recruited from 11 sites in USA. Caregivers completed the HF-CQ® and additional questionnaires, namely Caregiver Reaction Assessment, Work Productivity and Activity Impairment questionnaire, EuroQol-5 domain, and the Hospital Anxiety and Depression Scale. Patient-completed Global Impression of Severity, construct validity, concurrent validity, reliability and responsiveness of the HF-CQ® were also assessed.

Results

In the physical and lifestyle domains, all items showed acceptable validity. No high correlations between HF-CQ® scores and other caregiver-completed instruments, including the Hospital Anxiety and Depression Scale, Work Productivity and Activity Impairment questionnaire, EuroQol-5 domain or Caregiver Reaction Assessment, were reported. The intra-class correlation coefficient exceeded the threshold for reliability (>0.7) across the physical well-being (0.785), emotional/psychological (0.797), lifestyle (0.787) and total scores (0.850), indicating acceptable reliability. Internal consistency results using Cronbach’s alpha showed the total aggregate score of 0.942 to be reliable. In the responsiveness analyses, each of the three scales and the total score showed responsiveness to changes defined by the Caregiver Global Impression of Severity. The overall caregiver burden score increased with increased severity of illness in the cared-for patients.

Conclusions

The study provides initial evidence for the acceptable validity of the HF-CQ® as an instrument to measure heart failure caregiver burden.

Keywords

Heart Failure Patient Informal Caregiver Caregiver Burden Standardise Effect Size Caregiver Reaction Assessment 
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.

Notes

Acknowledgements

The authors are grateful to Pelle Stolt from MagliaRotta for providing writing support for this article. All authors contributed to the study design, the protocol and the analysis and intrepretation of data. Nicola Bonner, Bryan Bennet, Laura Grant performed the statistical analysis.

Compliance with ethical standards

Funding

This study was funded by Novartis Pharma AG, Basel, Switzerland.

Conflict of interest

Nicola Bonner, Bryan Bennett and Laura Grant work for Adelphi Values and were contracted by Novartis Pharma AG to design and run the validation study and conduct the analyses. Frederico Calado and Celine Deschaseaux are employees of Novartis Pharma AG. Anna Stromberg, Misook Chung, Marie-Louise Luttik, Tiny Jaarsma and Eldring Lewis received consulting fees as advisors on the study scientific design. There are no additional conflicts of interest.

Ethics approval

This study was reviewed and approved by the Copernicus Group Institutional Review Board (Approval Number ADE1-13-493).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Supplementary material

40271_2017_228_MOESM1_ESM.docx (28 kb)
Supplementary material 1 (DOC 28 kb)

References

  1. 1.
    Lainscak M, Blue L, Clark AL, et al. Self-care management of heart failure: practical recommendations from the Patient Care Committee of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail. 2011;13(2):115–26.CrossRefPubMedGoogle Scholar
  2. 2.
    Ponikowski P, Voors AA, Anker SD, et al. 2016 ESC guidelines for the diagnosis and treatment of acute and chronic heart failure: the Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. Eur Heart J. 2016;37(27):2129–200.CrossRefPubMedGoogle Scholar
  3. 3.
    American Heart Association. Classes of heart failure 2016. http://www.heart.org/HEARTORG/Conditions/HeartFailure/AboutHeartFailure/Classes-of-Heart-Failure_UCM_306328_Article.jsp#. Accessed 15 Nov 1999.
  4. 4.
    Blinderman CD, Homel P, Billings JA, et al. Symptom distress and quality of life in patients with advanced congestive heart failure. J Pain Symptom Manag. 2008;35(6):594–603.CrossRefGoogle Scholar
  5. 5.
    Holland R, Rechel B, Stepien K, et al. Patients’ self-assessed functional status in heart failure by New York Heart Association class: a prognostic predictor of hospitalizations, quality of life and death. J Card Fail. 2010;16(2):150–6.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Hobbs FD, Kenkre JE, Roalfe AK, et al. Impact of heart failure and left ventricular systolic dysfunction on quality of life: a cross-sectional study comparing common chronic cardiac and medical disorders and a representative adult population. Eur Heart J. 2002;23(23):1867–76.CrossRefPubMedGoogle Scholar
  7. 7.
    Clark AM, Reid ME, Morrison CE, et al. The complex nature of informal care in home-based heart failure management. J Adv Nurs. 2008;61(4):373–83.CrossRefPubMedGoogle Scholar
  8. 8.
    Luttik ML, Blaauwbroek A, Dijker A, Jaarsma T. Living with heart failure: partner perspectives. J Cardiovasc Nurs. 2007;22(2):131–7.Google Scholar
  9. 9.
    Stamp KD, Dunbar SB, Clark PC, et al. Family context influences psychological outcomes of depressive symptoms and emotional quality of life in patients with heart failure. J Cardiovasc Nurs. 2014;29(6):517–27.Google Scholar
  10. 10.
    Hoskins LM, Walton-Moss B, Clark HM, et al. Predictors of hospital readmission among the elderly with congestive heart failure. Home Healthc Nurse. 1999;17(6):373–81.CrossRefPubMedGoogle Scholar
  11. 11.
    Chin MH, Goldman L. Correlates of early hospital readmission or death in patients with congestive heart failure. Am J Cardiol. 1997;79(12):1640–4.CrossRefPubMedGoogle Scholar
  12. 12.
    Chung ML, Moser DK, Lennie TA, Frazier SK. Perceived social support predicted quality of life in patients with heart failure, but the effect is mediated by depressive symptoms. Qual Life Res. 2013;22(7):1555–63.CrossRefPubMedGoogle Scholar
  13. 13.
    Chung ML, Lennie TA, Riegel B, et al. Marital status as an independent predictor of event-free survival of patients with heart failure. Am J Crit Care. 2009;18(6):562–70.CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Martensson J, Dracup K, Canary C, Fridlund B. Living with heart failure: depression and quality of life in patients and spouses. J Heart Lung Transplant. 2003;22(4):460–7.CrossRefPubMedGoogle Scholar
  15. 15.
    Pihl E, Jacobsson A, Fridlund B, et al. Depression and health-related quality of life in elderly patients suffering from heart failure and their spouses: a comparative study. Eur J Heart Fail. 2005;7(4):583–9.CrossRefPubMedGoogle Scholar
  16. 16.
    Scott LD. Caregiving and care receiving among a technologically dependent heart failure population. ANS Adv Nurs Sci. 2000;23(2):82–97.CrossRefPubMedGoogle Scholar
  17. 17.
    Saunders MM. Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res. 2008;30(8):943–59.CrossRefPubMedGoogle Scholar
  18. 18.
    Pressler SJ, Gradus-Pizlo I, Chubinski SD, et al. Family caregiver outcomes in heart failure. Am J Crit Care. 2009;18(2):149–59.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Bahrami M, Etemadifar S, Shahriari M, Farsani AK. Informational needs and related problems of family caregivers of heart failure patients: a qualitative study. J Educ Health Promot. 2014;3:113.CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Clark AM, Freydberg CN, McAlister FA, et al. Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient for effective self-care. Eur J Heart Fail. 2009;11(6):617–21.CrossRefPubMedGoogle Scholar
  21. 21.
    Feinberg LAH. Assessing family caregiver needs: policy and practice considerations. AARP Public Policy Institute fact sheet. 2012. http://www.caregiving.org/wp-content/uploads/2010/11/AARP-caregiver-fact-sheet.pdf.
  22. 22.
    US Department of Health and Human Services and Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims. US Department of Health and Human Services and Food and Drug Administration. 2009, pp. 1–35.Google Scholar
  23. 23.
    Humphrey L, Kulich K, Deschaseaux C, et al. The Caregiver Burden Questionnaire for Heart Failure (CBQ-HF): face and content validity. Health Qual Life Outcomes. 2013;25(11):84.CrossRefGoogle Scholar
  24. 24.
    Given CW, Given B, Stommel M, et al. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–83.CrossRefPubMedGoogle Scholar
  25. 25.
    Margaret C, Reilly M. Development of the WPAI. New York: Reilly Associates; 2008. http://www.reillyassociates.net/WPAI_General.html. Accessed 2 Jun 2015.
  26. 26.
    Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Snaith RP, Zigmond AS. The hospital anxiety and depression scale. Br Med J. 1986;292:344.CrossRefGoogle Scholar
  28. 28.
    Busner J, Targum SD. The Clinical Global Impressions scale: applying a research tool in clinical practice. Psychiatry (Edgmont). 2007;4(7):28–37.PubMedPubMedCentralGoogle Scholar
  29. 29.
    Luttik ML, Jaarsma T, Tijssen JG, et al. The objective burden in partners of heart failure patients; development and initial validation of the Dutch Objective Burden Inventory. Eur J Cardiovasc Nurs. 2008;7(1):3–9.CrossRefPubMedGoogle Scholar
  30. 30.
    Makdessi A, Harkness K, Luttik ML, McKelvie RS. The Dutch Objective Burden Inventory: validity and reliability in a Canadian population of caregivers for people with heart failure. Eur J Cardiovasc Nurs. 2011;10(4):234–40.CrossRefPubMedGoogle Scholar
  31. 31.
    Rubin A. Research methods for social work. Belmont (CA): Brooks/Cole Cengage; 2011.Google Scholar
  32. 32.
    Karmilovich SE. Burden and stress associated with spousal caregiving for individuals with heart failure. Prog Cardiovasc Nurs. 1994;9(1):33–8.PubMedGoogle Scholar
  33. 33.
    Luttik ML, Jaarsma T, Veeger N, et al. Caregiver burden in partners of heart failure patients; limited influence of disease severity. Eur J Heart Fail. 2007;9(6–7):695–701.Google Scholar
  34. 34.
    Steiger JH. Tests for comparing elements of a correlation matrix. Psychol Bull. 1980;87:245–51.CrossRefGoogle Scholar
  35. 35.
    Ware J, Gandek B, Rogers B, Reese P. MAP-R for Windows: multitrait/multi-item analysis program-revised user’s guide. Boston: Health Assessment Lab, Inc.; 1994.Google Scholar
  36. 36.
    Cappelleri J. Patient-reported outcomes: measurement, implementation and interpretation. Boca Raton: CRC Press/Taylor & Francis Group; 2014.Google Scholar
  37. 37.
    Leidy NK, Revicki DA, Geneste B. Recommendations for evaluating the validity of quality of life claims for labeling and promotion. Value Health. 1999;2(2):113–27.Google Scholar
  38. 38.
    Nunnally JC, Bernstein IH. Psychometric theory. 3rd ed. New York: McGraw-Hill; 1994.Google Scholar
  39. 39.
    Cronbach L. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16:297–334.CrossRefGoogle Scholar
  40. 40.
    Cohen J. Statistical power analysis for the behavioral sciences. New York: Academic Press; 1977.Google Scholar

Copyright information

© Springer International Publishing Switzerland 2017

Authors and Affiliations

  • Anna Strömberg
    • 1
    • 2
    • 3
    • 4
  • Nicola Bonner
    • 5
  • Laura Grant
    • 5
  • Bryan Bennett
    • 5
  • Misook L. Chung
    • 6
  • Tiny Jaarsma
    • 7
  • Marie Louise Luttik
    • 8
  • Eldrin F. Lewis
    • 9
  • Frederico Calado
    • 10
    Email author
  • Celine Deschaseaux
    • 10
  1. 1.Division of Nursing ScienceLinköping UniversityLinköpingSweden
  2. 2.Department of Medical and Health SciencesLinköping UniversityLinköpingSweden
  3. 3.Department of CardiologyLinköping UniversityLinköpingSweden
  4. 4.Program in Nursing ScienceUniversity of California, IrvineIrvineUSA
  5. 5.Adelphi ValuesCheshireUK
  6. 6.College of NursingUniversity of KentuckyLexingtonUSA
  7. 7.Department of Social and Welfare StudiesLinköping UniversityLinköpingSweden
  8. 8.Research Group Nursing DiagnosticsHanze University of Applied Sciences GroningenGroningenThe Netherlands
  9. 9.Cardiovascular DivisionBrigham and Women’s HospitalBostonUSA
  10. 10.Novartis Pharma AGBaselSwitzerland

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