Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy.

BACKGROUND: The quality of life (QoL) of patients with osteosarcoma (OS) may be adversely affected by the disease or its treatment. Therefore, it is important to understand the QoL of patients undergoing treatment for OS to improve the QoL. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups. OBJECTIVE: This paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort. METHODS: A total of 2260 patients registered in the EURopean AMerican Osteosarcoma Study-1 (EURAMOS-1), of whom 97.92% (2213/2260) were eligible for the optional QoL assessment and could participate in terms of questionnaire availability. Overall, 61.86% (1369/2213) of patients and/or proxies completed the QoL evaluation at the first assessment time point (E1) after the start of preoperative treatment. The QoL measures used (self- and/or proxy reports) depending on the patient's age and national study group. Participants and nonparticipants in the ancillary QoL study were compared regarding relevant demographic and disease-related characteristics at registration in the trial. RESULTS: The participation rate at time point E1 did not differ with regard to age, gender, the occurrence of pathological fracture, or the presence of any metastases at diagnosis. No differences were found regarding the primary tumor site. Only the national study group affiliation had an influence on participation. Participation decreased linearly with trial progress up to 20% at the final time point of QoL assessment. CONCLUSIONS: This study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the QoL of pediatric and adolescent/young adult patients with cancer. Future outcomes of this QoL substudy will help to adapt interventions to improve QoL.

High-Intensity Chronic Stroke Motor Imagery Neurofeedback Training at Home: Three Case Reports.

Motor imagery (MI) with neurofeedback has been suggested as promising for motor recovery after stroke. Evidence suggests that regular training facilitates compensatory plasticity, but frequent training is difficult to integrate into everyday life. Using a wireless electroencephalogram (EEG) system, we implemented a frequent and efficient neurofeedback training at the patients' home. Aiming to overcome maladaptive changes in cortical lateralization patterns we presented a visual feedback, representing the degree of contralateral sensorimotor cortical activity and the degree of sensorimotor cortex lateralization. Three stroke patients practiced every other day, over a period of 4 weeks. Training-related changes were evaluated on behavioral, functional, and structural levels. All 3 patients indicated that they enjoyed the training and were highly motivated throughout the entire training regime. EEG activity induced by MI of the affected hand became more lateralized over the course of training in all three patients. The patient with a significant functional change also showed increased white matter integrity as revealed by diffusion tensor imaging, and a substantial clinical improvement of upper limb motor functions. Our study provides evidence that regular, home-based practice of MI neurofeedback has the potential to facilitate cortical reorganization and may also increase associated improvements of upper limb motor function in chronic stroke patients.

Psychological Stress and Coping Resources during Primary Systemic Therapy for Breast Cancer. Results of a Prospective Study.

Introduction This prospective study reports on the impact of psychological factors on women with primary breast cancer undergoing neoadjuvant chemotherapy. These women are in a special situation, where they not only have to deal with the shock of the cancer diagnosis but also with the fact that the malignant tumor will not be removed immediately but only after completing chemotherapy. A situation like this is stressful and requires a personal strength which not every woman may have. Methods In a prospective study 53 patients were assessed using various psychological and psycho-oncological questionnaires which aimed to evaluate their psychological stress and their coping resources. The women were evaluated before starting systemic treatment (t-1) and again immediately after completing chemotherapy but prior to surgery (t-2). The patients were also asked about their coping strategies at t-1 and t-2. Using the Ulm Coping Manual (UCM) the interviews were rated by independent assessors blinded to the respective patient's medical data. Patients were followed up for 3.7-5.5 years after completing chemotherapy. Results Patients with poor psychosocial adjustment to the situation were identified prior to starting treatment (at t-1). The social coping strategies of these women were found to be inadequate. Their coping behavior was characterized by resignation and they did not attempt to seek social support. This was found to increase their overall risk of recurrence or of developing another type of malignancy during the follow-up period. The study also identified patients who coped significantly better with primary systemic treatment by strengthening their coping strategies. Conclusion Careful psychological screening of women's vulnerabilities or strengths immediately after the diagnosis and prior to any oncological treatment is strongly recommended. This would help to identify those patients early on who will require additional psycho-oncological support due to their psychological vulnerability.