PedsQL^TM Family Impact Module as a method to assess the impact of childhood cancer on the family life. Linguistic validation and a pilot study

Chronic diseases, in particular cancer, have a negative impact on daily functioning of not only the child, but also its family. Unfortunately, in Poland the quality of life of caregivers of children with cancer can be assessed to a limited extent only. There are no standardized tools for characterizing good psychometric parameters that take into account specific characteristics of the disease. Therefore, we have decided to adapt PedsQL^TM Family Impact Module to the Polish conditions, the module which is widely used abroad to assess the impact of a variety of different chronic diseases, including cancer of the child. The study aimed at presenting the process and results of the linguistic adaptation of PedsQL^TM Family Impact Module to Polish and the results of a pilot study conducted in 10 parents of children diagnosed with cancer of the hematopoietic system. Adaptation of the questionnaire included Polish translation that was subsequently translated back to English and the final Polish version was determined. Additionally, the verification by the thinking-aloud protocol was performed in 5 target respondents. The final version was used in a pilot study in which the results from all spheres and total summaries were significantly lower than in the published studies. Although the distributions of results are in the bottom of the one-hundred point scale, they are so remote from its lower end that they hold a promise as regards the accuracy of the range in which the test questionnaire measures a given variable.