Citation
J Haem Pract 2013; 1(1):J Haem Pract 2014; 1(1): 17-22. doi: 10.17225/jhp00006

Authors: Anica Phillott

Anica Phillott
Haemophilia Network Nurse Manager
North Hampshire Haemophilia Centre, Basingstoke and North Hampshire Hospital NHS Foundation Trust, Uplands House, Aldermaston Road, Basingstoke RG24 9NA, UK.

Abstract

This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study.

References

  1. Weatherhall J, Barnes N, Brown C, Preaud, E. Future characteristics of bypassing agents to improve care of hemophilia inhibitor patients: an economic and healthrelated quality of life perspective. Pharmacoeconomics Outcomes Res 2011; 11: 411-414.
  2. Hay CRM, Brown S, Collins PW, et al. The diagnosis and management of factor Vlll and lX inhibitors: a guideline from the United Kingdom Haemophilia Centre Doctors Organisation. Br J Haematol 2006; 133: 591-605.
  3. Brown TM, Lee WC, Joshi AV, Pashos CL. Health-related quality of life productivity impact in haemophilia patients with inhibitors. Haemophilia 2009; 15: 911-917.
  4. Parahoo K. Nursing Research: Principles, Process and Issues (eds.) Hampshire: Palgrave Macmillan, 2006.
  5. Young NL, Bradley CS, Wakefield CD, et al. How well does the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia? Pediatric Blood & Cancer 2006; 47: 305-311
  6. Endacott R. Clinical research 4: Qualitative data collection and analysis. International Emergency Nursing 2008; 16: 48-52.
  7. Strauss A, Corbin J. Basics of qualitative research: Grounded theory procedures and techniques. Sage Publications, Newbury Park, CA: 1990.
  8. Hofstede FG, Fijnvandraat K, Plug I, et al. Obesity: a new disaster for haemophilic patients? A nationwide survey. Haemophilia 2008; 14: 1035-8.
  9. Verni J, Limbers C, Burwinkle T. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Care Scales. Health and Quality of life Outcomes 2007: 5; 43.
  10. Meuleners LB, Binns CW, Lee AH, Lower A. Perceptions of the quality of life for the adolescent with a chronic illness by teachers, parents and health professionals: a Delphi study. Child: Care, Health and Development 2002; 28: 341-349.
  11. Major D. Utilizing role theory to help employed parents cope with children’s chronic illness. Health Education Research 2003; 18: 45-57.
  12. Eiser C, Morse E. A review of measures of quality of life for children with chronic illness. Arch Dis Childhood 2001; 84: 205-211.
  13. Clarke C, Haines H, Head J, et al. Psychological symptoms and physical health and health behaviours in adolescents: A prospective 2-year study in East London. Addiction 2006; 102: 126-135.
  14. Sawyer S, Drew S, Yeo M, Britto M. Adolescents with a chronic condition: Challenges living, challenges treating. The Lancet 2007; 369:1481-1489.
  15. Michaud PA, Suris JC, Viner R. The adolescent with chronic condition. Arch Dis Child 2004; 89:943-949.
  16. Janse AJ, Uiterwaal CSPM, Gemice RJBJ, et al. A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005; 88: 495-502.
  17. Hopia H, Paavilainen E, Astedt-Kurki P. Promoting health for families of children with chronic condition. Journal of Advanced Nursing 2004; 48: 575-583.
  18. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005; 16: 34.

The Journal of Haemophilia Practice is published by Haemnet.

Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.