State of the art in childhood cancer care: Perceived attitudes of Finnish patients and parents on disease and treatment-related issues

Purpose During the past ten years in Finland as well as internationally, nu merous improvements have been made in the care of childhood cancer patients . To find out possible need for further interventions in modern childhood c ancer care, the ratings of patients and their parents on disease-related me dical and non-medical issues were studied. Patients and Methods In a cross-sectional setting, queries were performed f rom 3 to 48 months after diagnosis, and a questionnaire with visual analogu e scales was used. There were 99 families responding, which was about 67% o f all eligible families. A background variable analysis and analysis of obs erver agreement of categorical assessments were performed. Results and Conclusions The results indicated that, despite some critical v oluntary comments, both patients and parents were satisfied with informatio n given, with possibilities to contribute to the child's care, and with con tinuity in patient-staff relations. However, there seemed to be a desire fo r more systematic psychological support for patients and families, and the school-aged patients wanted to contribute more in medical decision making. The changes in appearances of the school-aged patients, as well as nausea a nd isolation, were the most unpleasant factors for the patients and interve ntions to further alleviate these inconveniences should be planned. Parenta l information on the late-effects of cancer treatment seemed to be needed m ost about 7-12 months after diagnosis, which might be a good timing for par ent/family courses. The school-aged patients were not concerned about late consequences of treatment and this aspect might further stress the need for systematic, person and prevention oriented follow-up. Our results could be taken as a guideline for further interventions and renovations in the fiel d of quality of childhood cancer care. The methods used in this study seeme d to be valid in studying the state of the art in childhood cancer care and , thus, they also could be applicable internationally.