Advertisement

Quality of Life Research

, Volume 23, Issue 1, pp 317–326 | Cite as

The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member

  • Catherine Jane Golics
  • Mohammad Khurshid Azam Basra
  • Andrew Yule Finlay
  • Sam Salek
Article

Abstract

Purpose

The impact of patients’ illness on family members has proven to be both widespread and severe. Currently, there is no generic instrument that can be used to measure the impact of illnesses on the partner or family members of patients. This study describes the development of the Family Reported Outcome Measure (FROM-16)©.

Methods

A total of 30 items were generated from the content of previous interviews with family members. Qualitative and quantitative feedback from expert panels was collected. Items were reduced using both Rasch analysis and factor analysis, and full psychometric testing was carried out including construct validity and reliability.

Results

Collapsing response categories, removing misfitting items and combining residually correlating items produced a good fit to the Rasch model (n = 240, total χ 2 = 56.6, df = 48, p = 0.18). Factor analysis produced a 16-item measure with two factors. The FROM showed high internal consistency (n = 120, Cronbach’s α = 0.80–0.89), high reproducibility (n = 51, intraclass correlation = 0.85–0.92) and a mean completion time of 2 min. Construct validity was proven through the correlation between the FROM and the WHOQOL-BREF total scores (n = 119, r = −0.53–0.52, p < 0.001), and the correlation between the FROM and the patient’s overall health score (n = 120, r = −0.45–0.48, p < 0.001).

Conclusion

The FROM-16 is both reliable and valid for use. It has a potential for wide use, including clinical (healthcare professionals or researchers in all medical specialties), industrial and social sciences. The FROM can be used to identify areas where family members need further support, as well as identify those individuals most affected by the patient’s illness.

Keywords

Family Partner Secondary impact of disease Measurement Quality of life FROM-16 

Notes

Acknowledgments

We wish to thank the patients and their family members whose participation allowed this research to be carried out. We also wish to thank Mr Mike Horton for his statistical advice. We wish to thank the clinicians who participated in this study: Dr Shakeel Ahmad, Dr Maria Atkins, Professor Angus Clarke, Dr Annabel Borley, Dr Gwilym Bowen, Dr Adeline Cutinha, Mrs Wendy Davies, Dr Andrew Freedman, Dr Lindsay George, Dr John Green, Professor John Gregory, Professor Julian Halcox, Dr Ben Hope-Gill, Dr Sharon Jones, Mr Hrishi Joshi, Dr Manju Kalavala, Dr Sharmila Khot, Professor Malcolm Mason, Mr Philip Matthews, Dr Richard Moore, Professor James Morgan, Ms Elizabeth Mudge, Mr Declan O’Doherty, Professor Neil Robertson, Dr Clare Rowntree, Dr Caroline Scherf, Professor Jonathan Shepherd, Dr Victor Sim, Dr John Staffurth, Mr Alun Tomkinson, Mr Jared Torkington, Dr Amanda Tristram.

References

  1. 1.
    Basra, M. K., Sue-Ho, R., & Finlay, A. Y. (2007). The Family Dermatology Life Quality Index: Measuring the secondary impact of skin disease. British Journal of Dermatology, 156(3), 528–538.PubMedCrossRefGoogle Scholar
  2. 2.
    Swanberg, J. E. (2006). Making it work: Informal caregiving, cancer, and employment. Journal of Psychosocial Oncology, 24(3), 1–18.PubMedCrossRefGoogle Scholar
  3. 3.
    Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328.PubMedCrossRefGoogle Scholar
  4. 4.
    Basra, M. K., & Finlay, A. Y. (2007). The family impact of skin diseases: The Greater Patient concept. British Journal of Dermatology, 156(5), 929–937.PubMedCrossRefGoogle Scholar
  5. 5.
    Kornblith, A. B., Herr, H. W., Ofman, U. S., Scher, H. I., & Holland, J. C. (1994). Quality of life of patients with prostate cancer and their spouses. The value of a data base in clinical care. Cancer, 73(11), 2791–2802.PubMedCrossRefGoogle Scholar
  6. 6.
    Rees, J., O’Boyle, C., & MacDonagh, R. (2001). Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine, 94(11), 563–566.PubMedCentralPubMedGoogle Scholar
  7. 7.
    Breau, G. M., Camfield, C. S., Camfield, P. R., & Breau, L. M. (2008). Evaluation of the responsiveness of the Impact of Pediatric Epilepsy Scale. Epilepsy and Behaviour, 13(3), 454–457.CrossRefGoogle Scholar
  8. 8.
    Ben-Gashir, M. A., Seed, P. T., & Hay, R. J. (2002). Are quality of family life and disease severity related in childhood atopic dermatitis? Journal of the European Academy of Dermatology and Venereology, 16(5), 455–462.PubMedCrossRefGoogle Scholar
  9. 9.
    Golics, C. J., Basra, M. K. A., Finlay, A. Y., & Salek, M. S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine (in press).Google Scholar
  10. 10.
    Golics, C. J., Salek, M. S., Basra, M. K. A., & Finlay, A. Y. (2013). The impact of patients’ disease on family quality of life: An experience from 26 specialties. Journal of the Royal Society of Medicine. doi: 10.1177/0141076812472616.
  11. 11.
    Skevington, S. M., Lotfy, M., & O’Connell, K. A. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13(2), 299–310.PubMedCrossRefGoogle Scholar
  12. 12.
    Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32(3), 221–233.PubMedCrossRefGoogle Scholar
  13. 13.
    Haynes, N. S., Richard, D. C. S., & Kubany, E. S. (1995). Content validity in psychological assessment: A functional approach to concepts and methods. Psychological Assessment, 7(3), 238–247.CrossRefGoogle Scholar
  14. 14.
    Jones, P. W., Harding, G., Berry, P., Wiklund, I., Chen, W. H., & Kline Leidy, N. (2009). Development and first validation of the COPD Assessment Test. European Respiratory Journal, 34(3), 648–654.PubMedCrossRefGoogle Scholar
  15. 15.
    Pallant, J. F., & Tennant, A. (2007). An introduction to the Rasch measurement model: An example using the Hospital Anxiety and Depression Scale (HADS). British Journal of Clinical Psychology, 46(Pt 1), 1–18.PubMedCrossRefGoogle Scholar
  16. 16.
    Hansen, T., Lambert, H. C., & Faber, J. (2012). Validation of the Danish version of the McGill Ingestive Skills Assessment using classical test theory and the Rasch model. Disability and Rehabilitation, 34(10), 859–868.PubMedCrossRefGoogle Scholar
  17. 17.
    Fisher, W. P. (1992). Reliability statistics. Rasch Measurement Transactions, 6(3), 238.Google Scholar
  18. 18.
    Fabrigar, L. R., Wegener, D. T., MacCallum, R. C., & Strahan, E. J. (1999). Evaluating the use of exploratory factor analysis in psychological research. Psychological Methods, 4(3), 272–299.CrossRefGoogle Scholar
  19. 19.
    Pallant, J. F. (2005). SPSS survival manual: A step-by-step guide to data analysis using SPSS for Windows (Version 12) (2nd ed.). In J. F. Pallant. Maidenhead: Open University Press.Google Scholar
  20. 20.
    Cattell, R. B. (1966). The scree test for number of factors. Multivariate Behavioural Research, 1(2), 245–276.CrossRefGoogle Scholar
  21. 21.
    Finch, H. (2006). Comparison of the performance of varimax and promax rotations: Factor structure recovery for dichotomous items. Journal of Educational Measurement, 43, 39–52.CrossRefGoogle Scholar
  22. 22.
    Cronbach, L. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.CrossRefGoogle Scholar
  23. 23.
    Streiner, D. L., & Norman, G. R. (2008). Health Measurement Scales: A practical guide to their development and use (4th ed.). Oxford: Oxford University Press.CrossRefGoogle Scholar
  24. 24.
    Nunnally, J. C. (1978). Psychometric theory (2nd ed.). New York: McGraw-Hill.Google Scholar
  25. 25.
    Issacs, B. J., Brown, I., Brown, R. I., Baum, N., Myerscough, T., Neikrug, S., et al. (2007). The international family quality of life project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177–185.CrossRefGoogle Scholar
  26. 26.
    Stein, R. E., & Riessman, C. K. (1980). The development of an impact-on-family scale: Preliminary findings. Medical Care, 18(4), 465–472.PubMedCrossRefGoogle Scholar
  27. 27.
    Golics, C. J., Basra, M. K. A., Salek, M. S., & Finlay, A. Y. (2011). Diseases profoundly affect the quality of life of family members of patients. The Journal of Investigative Dermatology, 131(Suppl 2), S39.Google Scholar
  28. 28.
    Grant, J. S., & Davis, L. L. (1997). Selection and use of content experts for instrument development. Research in Nursing & Health, 20(3), 269–274.CrossRefGoogle Scholar
  29. 29.
    Uhlig, T., Lillemo, S., Moe, R. H., Stamm, T., Cieza, A., Boonen, A., et al. (2007). Reliability of the ICF core set for rheumatoid arthritis. Annals of the Rheumatic Diseases, 66(8), 1078–1084.PubMedCrossRefGoogle Scholar
  30. 30.
    Heppner, P. P., Kivlighan, D. M., & Wampold, B. E. (1992). Research design in counseling. Pacific Grove, CA: Brooks/Cole.Google Scholar
  31. 31.
    Clark, L. A., & Watson, D. (1995). Constructing validity: Basic issues in objective scale development. Psychological Assessment, 7(3), 309–319.CrossRefGoogle Scholar
  32. 32.
    Ponterotto, J. G., & Ruckdeschel, D. E. (2007). An overview of coefficient alpha and a reliability matrix for estimating adequacy of internal consistency coefficients with psychological research measures. Perceptual and Motor Skills, 105(3 Pt 1), 997–1014.PubMedGoogle Scholar
  33. 33.
    Housman, T. S., Patel, M. J., Camacho, F., Feldman, S. R., Fleischer, A. B., Jr, & Balkrishnan, R. (2002). Use of the Self-Administered Eczema Area and Severity Index by parent caregivers: Results of a validation study. British Journal of Dermatology, 147(6), 1192–1198.PubMedCrossRefGoogle Scholar
  34. 34.
    Ware, J. E., Jr, & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Catherine Jane Golics
    • 1
    • 2
  • Mohammad Khurshid Azam Basra
    • 2
  • Andrew Yule Finlay
    • 2
  • Sam Salek
    • 1
  1. 1.Centre for Socioeconomic Research, School of Pharmacy and Pharmaceutical SciencesCardiff UniversityCardiffUK
  2. 2.Department of Dermatology and Wound Healing, Cardiff University School of MedicineCardiff UniversityCardiffUK

Personalised recommendations