title: Opinions on childhood cancer care and degree of agreement between patient/mother and mother/father pairs.
abstract: During the past decades in Finland and internationally, numerous improvements have been made to relieve the inconveniencies faced by patients and their parents during childhood cancer treatment. The aim of this study was to find out which issues are rated differently by patients and proxies and also by mothers and fathers. The results may, in the future, guide us in planning the assessments aimed to be used near the time of treatment. In a cross-sectional setting, queries were performed from 3 to 48 months after diagnosis, and a questionnaire with visual analog scales was used. The issues in relation to disease, treatment, and social network were assessed. There were 99 families responding, which was 67% of all eligible families. An analysis of observer agreement of categorical assessments was performed between mother and father in 61 families, and between mother and school-aged patient in 34 families. Changes in appearance, influence of isolation, missing school, and treatment-related procedures such as venous punctures were rated more unpleasant/worrisome by school-aged patients than parents. Thus, these issues cannot be assessed reliably by proxies. Child's social relations, acute side effects of treatment, and perceived support and also adequacy of information from hospital team were quite reliably assessed by proxies. The influences of pain and procedures under anesthesia were, however, overestimated by the proxies. The concerns about acute symptoms, possibilities of recovery, and especially late effects did not seem to be an issue affecting the patients' well-being. However, these items did significantly bother the minds of the parents, especially mothers, and may thus have an indirect influence on the patients' life as well. The minor differences between the ratings of fathers and mothers could mainly be explained by mothers' major role as caregivers and fathers' role as breadwinners of the family. However, as fathers may be less involved in hospital-related issues, they also may miss some information and support provided by the hospital team.
authors.affiliation: Department of Pediatrics, University of Turku, Turku, Finland. paivi.lahteenmaki@tyks.fi
authors.forename: Päivi M
authors.initials: PM
authors.lastname: Lähteenmäki
authors.forename: Anne
authors.initials: A
authors.lastname: Mäkipernaa
authors.forename: Hans
authors.initials: H
authors.lastname: Helenius
authors.forename: Toivo T
authors.initials: TT
authors.lastname: Salmi
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005220:Fathers / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009035:Mothers / Q000523:psychology*; D009369:Neoplasms / Q000523:psychology*; D011795:Surveys and Questionnaires