Parents' perceptions of their child's symptom burden during and after cancer treatment.

CONTEXT: Previously reported studies of children with cancer mostly provide cross-sectional knowledge of the prevalence of symptoms but do not show when during the disease trajectory and after the end of successful treatment certain symptoms are most prevalent and/or distressing. OBJECTIVES: The aim was to describe parents' perceptions of their child's symptom burden longitudinally during and after cancer treatment and to investigate whether parents' perceptions vary with child characteristics and parent gender. METHODS: One hundred sixty parents (49% fathers) of 89 children answered a modified version of the Memorial Symptom Assessment Scale (MSAS) 10-18 at six different time points from one week after the child's diagnosis (T1) to 12-18 months after the end of successful treatment (T6). RESULTS: Feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms. During treatment, the most prevalent symptom is less hair than usual. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout the treatment. The child's symptom burden decreases over time. There is no difference regarding the reported symptom burden between the parents of a daughter or a son, or parents of a child older or younger than seven years of age. Mothers' and fathers' assessments of the symptom number, total MSAS and the subscales, are associated, but mothers' assessments are often higher than fathers' assessments. CONCLUSION: The prevalence and distress of symptoms and symptom burden decrease over time. However, even though the cancer is cured, feeling sad is reported as being prevalent and psychological distress is an issue. A dialogue between staff and the family about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during the disease trajectory.

Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer.

BACKGROUND: As staff members prioritize medical resources for patients, it is imperative to find out whether their assessments of patients' health status agree with patients' assessments. The degree to which physicians and nurses can identify the distress, anxiety, and depression experienced by adolescents recently diagnosed with cancer was examined here. PROCEDURE: Adolescents undergoing chemotherapy (13-19 years, n = 53), physicians (n = 48), and nurses (n = 53) completed a structured telephone interview, 4-8 weeks after diagnosis or relapse, investigating disease and treatment-related distress, anxiety, and depression. RESULTS: The accuracy of staff ratings of physical distress could be considered acceptable. However, problems of a psychosocial nature, which were frequently overestimated, were difficult for staff to identify. Staff underestimated the distress caused by mucositis and worry about missing school more than they overestimated distress. These aspects were some of the most prevalent and overall worst according to the adolescents. Both physicians and nurses overestimated levels of anxiety and depression. Nurses tended to show higher sensitivity than physicians for distress related to psychosocial aspects of distress, while physicians tended to show higher accuracy than nurses for physical distress. CONCLUSIONS: Staff was reasonably accurate at identifying physical distress in adolescents recently diagnosed with cancer whereas psychosocial problems were generally poorly identified. Thus, the use of staff ratings as a "test" to guide specific support seems problematic. Considering that the accuracy of staff ratings outside a research study is probably lower, identification of and action taken on adolescent problems in relation to cancer diagnosis and treatment need to rely on direct communication.

Psychosocial needs of families with a child with cancer.

PURPOSE: The aims of this study were to map the problems and needs of children with cancer and their families with regard to possible psychosocial interventions, and to do an acceptability study of different ways to provide support. METHODS: The authors performed a cross-sectional structured telephone interview with 56 parents of children with cancer and 13 adolescents from these families. On 0 to 10 analog scales, parents and adolescents rated the importance of different needs, how these needs had been met, the acceptability of different ways of providing supportive interventions, how often these ways had been used, and comfort using them. RESULTS: Parents' mean rating of importance of information needs was 9.42, peer social support 7.84, and self-management therapy 9.21. The ratings of how well these needs had been met were 8.05, 5.30, and 7.13, respectively. Both parents and adolescents ranked getting information written on paper highest, preferred to communicate in a face-to-face support group for peer social support, and preferred a therapist for self-management therapy. The comfort ratings for using different ways to provide the interventions were all high, as was access; 89% of families had computers in their homes, 76% had Internet access. CONCLUSIONS: The needs for information, peer social support, and self-management therapy are all high. There is still room to meet these needs better. Using paper-based, telephone, computer CD, or an interactive Web-based intervention package all seem to be acceptable and accessible ways to meet the needs and might reduce the risk of families developing psychosocial problems.