Eygló Gudmundsdóttir1, Lina Hörnquist, Krister K Boman. 1. Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Astrid Lindgren Children's Hospital, 17176, Stockholm, Sweden. eyglo.gudmundsdottir@ki.se
Abstract
PURPOSE: This study determined the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization. METHODS: Participants were 328 parents of 211 CC patients, in or off treatment. Illness-specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group. RESULTS: Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059). CONCLUSIONS: Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child's cancer.
PURPOSE: This study determined the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization. METHODS:Participants were 328 parents of 211 CC patients, in or off treatment. Illness-specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group. RESULTS: Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059). CONCLUSIONS: Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child's cancer.