Quality Of Life
The ITP Support Association awarded a research grant to support the British part of the International ITP Quality of Life study in March 2006.
How Do You Measure Quality Of Life (QoL) In Childhood Immune Thrombocytopenic Purpura (ITP)?
by Robert J Klaassen, MD Victor S. Blanchette, FRCP, Dorothy Barnard, MD, Cindy D. Wakefield, RN, Christine Curtis, MSc and Nancy L. Young, PhD
Much of the focus by patients, doctors and other health care professionals when dealing with ITP has been on the platelet count. Fortunately, patients with even very low platelet counts may have minimal or no bleeding. Relying solely on the platelet count to decide when to treat, and what treatment is needed, does not seem to be the best way to manage this condition. Other approaches are needed.
Quality of life (QoL) has been defined by the World Health Organization as the "net consequence of life characteristics on a person's perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns". The key to measuring QoL is that it is subjective, reflecting present lifestyle, past experience, hopes for the future, dreams and ambitions. Those of us who see patients with ITP are keenly aware of the impact it can have in all of these areas.
Back in 1997, two pediatric hematologists in Canada, Dr. Dorothy Barnard and Dr. Victor Blanchette, decided to do something about this and started the process of developing three questionnaires (also called measures) to try to measure the quality of life of children with ITP and their parents. It took a lot of work and the contribution of 140 parents and 95 children for that vision to come to fruition. Dr. David Feeney, an expert in the development of disease specific quality of life measures, provided invaluable input for the initiative which was funded by Cangene (Canada). Details of the ITP QoL instrument were published in 2003 in the Journal of Pediatric Hematology and Oncology.
But that was only the beginning. In 2004, a total of 13 families reviewed the measures in detail, allowing for further refinements to be made. The revised questionnaires were given the name Kid's ITP Tools (KIT). We then gave the KIT to 49 families with chronic ITP and 40 with acute ITP spread out over four treatment centres in Canada (Ottawa, Kingston, Toronto, and Hamilton) and two in the United States (Boston and Dallas). This North American study was led by Dr. Rob Klaassen, a pediatric hematologist in Ottawa, and Dr. Nancy Young, a Canadian expert in the field of outcome measures development. The study was a success and showed that the KIT was reliable, valid and responsive to change. This was demonstrated by the fact that the results were stable (reliable) when given repeatedly to patients whose QoL was stable, found higher QoL in children with chronic ITP when compared to children newly presenting with ITP (valid), and improved when the children's platelet count went back to normal (responsiveness).
Once we showed that the KIT worked in North America, we decided to test it in four other countries: UK (Queen's English), Germany (German), France (French) and Uruguay (Spanish). The first step in the non-English countries was to complete a rigorous process of translation. This involved translating the measures to the various languages and then back translating the questionnaires into English. We then compared the back-translated measures to the original KIT to identify any discrepancies. Three Canadian pediatric hematologists with expertise in French, German and Spanish reviewed the problem areas and corrections were made by consensus over the telephone. We had quite the phone bills!
Next we took the translated measures and asked 10-20 families in each of the four countries to review them in detail. Canadian investigators and their counterparts from the UK (Manchester), France (Nantes, Angers, Lyon), Germany (Berlin) and Uruguay (Montevideo), together with research coordinators for the study, Chris Curtis and Cindy Wakefield, met in December 2006 in Orlando, Florida to go over the comments from the families. Interestingly even after all the previous work there were many refinements and the European and South American versions were finalised.
Over the next 6 to 9 months we will be asking families in the UK, France, Germany and Uruguay to fill out the questionnaire to make sure that it works as well as it did in North America. In the UK, this will be done by Dr. John Grainger, Dr. Paula Bolton-Maggs, Dr Russell Keenan and Dr Mike Richards. If you are contacted by one of these physicians about this international ITP study please help. The questionnaires only take a few minutes to fill out and you will be contributing to the success of this study.
At this point we would like to thank the ITP Support Association for awarding us £10,000 to support the British part of the International ITP QoL study. The money will be well spent and we think the end result will be a useful tool that can be used in future ITP studies.
Acknowledgement
Our thanks are due to Cangene who have funded all parts of the development of the KIT, and to patients/families who participated in our studies and without whose help this research would not have been possible.
Investigators
Study Coordinators: Cindy Wakefield, Chris Curtis, Catharine Bradley; Canada: Dr Nancy Young, Dr. Robert Klaassen, Dr. Mariana Silva, Dr. Victor Blanchette, Dr. Anthony Chan, Dr. Dorothy Barnard, Dr. Vicky Price; USA: Dr. George Buchanan, Dr. Ellis Neufeld; UK: Dr. John Grainger, Dr. Paula Bolton- Maggs, Carol Beane; France: Dr. Eliane Tarral, Dr. Isabelle Pellier, Dr. Françoise Mechinaud, Dr Anne Ponthieux, Anne Marie Favreaux; Uruguay: Dr. Gustavo Dufort, Dr. Estela Citrin; Germany: Prof. Gerhard Gaedike, Dr. Tillmann Taube, and Arne Riedlinger.
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| Dr. Victor S. Blanchette | Dr. John Grainger |
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