Medical follow-up visits in adults 5-25 years after treatment for childhood acute leukaemia, lymphoma or Wilms' tumour.

AIM: One aspect of organizing medical follow-up for adult survivors of childhood cancer is to determine to what extent the former patient experiences a need for health services. In the present paper, we studied how the healthcare needs, both subjectively and objectively, were fulfilled for our former patients. METHODS: 335 survivors over 18 y of age, with a follow-up time of more than 5 y after completion of therapy, were sent a questionnaire probing their present use of health services. RESULTS: The response rate was 73%. A majority (60%) of the survivors had no regular follow-up visits, and 42% of these reported that they missed not having one. More than one third were thus far dissatisfied with the follow-up programme. Only 3% of those who had regular follow-ups found them "unnecessary". Complaints subjectively related to their diseases or treatments were reported by 47%. Out of all responders, 34% did not miss having regular follow-up visits. Neither perceived disease-related complaints nor radiation therapy was a predictor for having a scheduled follow-up visit. CONCLUSION: In the absence of a long-term follow-up programme, many survivors were not receiving proper medical healthcare, whether from their perspective or from a professional one.

Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians?

Diagnosis and treatment of pain are central components in the care of children with cancer. The aim of the present study was to compare the viewpoints of children and parents with those of professionals, on different aspects of pain in children with cancer. Information was collected through questionnaires and interviews. In particular, we focused on the extent and causes of pain, strategies to reduce procedural pain, pain evaluation, and attitudes to pain treatment. We found that both families and professionals shared the opinion that pain was a common symptom during different phases of cancer treatment but, surprisingly, professionals regarded it as more frequent than families. The groups agreed that treatment related pain is the most critical problem, followed by procedure and cancer related pain. Concerning strategies to decrease procedural pain, there was a high concordance in views between groups. Nurses and physicians more often claimed that failing pain treatment was associated with psychological factors such as high levels of anxiety in parents and children, loneliness, and lack of preparation. The self-report, according to both parents and professionals, is a feasible procedure even in young children from 4 years of age. Both groups asserted that parents were better in ascertaining the extent of their child's pain. In conclusion, although the families and professionals in this study have many comparable views concerning pain in children with cancer, divergences also exist. To acquire a more accurate picture of the situation we must focus on the views of the children first, and then those of parents and professionals. A tendency to overestimate the problems was observed in professionals. Hopefully this reflects a keen awareness of the current situation.

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.

[Acute lymphatic leukemia in Swedish children 1968-2001. The marked improvement of the survival can be ascribed to successful treatment]. / Akut lymfatisk leukemi hos barn i Sverige 1968-2001. Markant förbättring av överlevnaden tack vare framgångsrik behandling.

This is a survey of acute lymphoblastic leukemia (ALL) in Swedish children from 1968 to 2001. The survival has increased from a few per cent to more than 80 per cent of children with ALL in these national complete patient materials. Changes in diagnosis and treatment are discussed as well as the importance of supportive care. The favorable results can almost certainly be ascribed to continuous cooperation between the Swedish pediatric departments, the Swedish Child Leukemia Group and international working groups.

Transient erythroblastopenia of childhood: prospective study of 10 patients with special reference to viral infections.

PURPOSE: It has been proposed that human parvovirus B19 or human herpesvirus 6 (HHV-6) causes transient erythroblastopenia of childhood (TEC). This study was performed prospectively and accurately in a sufficiently large population to confirm or reject these suggestions, or possibly to find another causative agent for TEC. PATIENTS AND METHODS: The authors studied prospectively the causative aspects of 10 consecutive children with TEC presenting at five Swedish pediatric clinics from 1994 to 1998 using serologic assays and polymerase chain reaction assays for B19, HHV-6, cytomegalovirus, and Epstein-Barr virus (EBV). The authors also performed isolation investigations of virus from bone marrow, stools, and aspirate from the nasopharynx. RESULTS: The authors found acute EBV infection in one child. There were no other instances of IgM positivity for any viruses at presentation, but a few children did show IgG positivity to HHV-6 (n = 2), EBV (n = 1), and cytomegalovirus (n = 1). No children were positive with respect to IgG for B19. However, it could not be determined when these children had been infected, and thus, a connection to TEC cannot be proved or excluded. No child showed B19 or HHV-6 DNA in serum or bone marrow collected at presentation. Isolation of virus from bone marrow, stools, and aspirate from nasopharynx culture was negative in all children but one, who had rotavirus in stool. CONCLUSIONS: HHV-6, B19, EBV, and cytomegalovirus are not common causative agents of TEC. The authors found no proof of any single agent causing TEC.