Our findings indicate that SPPB is an independent predictor of long-term survival. The chair stand subtask could be a predictor as useful as the full performance battery, becoming a good alternative for primary care where the burden of performing all three subtasks could be excessive.

Background. Blood diseases and cancer are part of a group of rare conditions in pediatrics. In general, cancer treatments are prolonged (months or years), so psychosocial support has been introduced to provide comprehensive care to these patients. Objective: To explore psychosocial care provided at the public hospitals of Argentina to children and adolescents with cancer. Population and Methods. An electronic questionnaire was sent to the heads of the Departments of Hematology and Oncology, Mental Health, and Social Services of 27 public hospitals providing care to pediatric patients with cancer. The survey included questions related to psychosocial care provided to this group of patients. Answers were collected and processed in the 2013-2014 period. Results. Of the total number of health care providers contacted, 62.6% (47/75) completed the questionnaire. As per hematologistoncologists, the three specialties complied with the recommendations made by the International Society of Pediatric Oncology to a greater extent than that reported by the psychosocial area. Such difference was repeatedly observed in all answers. The standards that were observed more consistently were continuation of education and care of healthy siblings. The health care providers from the three specialties indicated that they lacked formal mechanisms to detect failures in treatment adherence in an early manner, although treatment withdrawal interventions were systematized. Providers from the psychosocial area indicated that human resources were lacking and perceived little interdisciplinary work. Conclusions. This study reported partial adherence to the standards recommended by the International Society of Pediatric Oncology. The assessment made by hematologists-oncologists was different from that made by health care providers from the psychosocial area.

Background Inflammatory bowel diseases (IBD) are chronic relapsing diseases of unknown etiology, usually beginning at a young age. Although life expectancy of IBD patients is near to the mean of healthy population, IBD has a significantly negative impact on patients’ quality of life. Recent research has evidenced that a poorer quality of life can contribute to relapse or worsening of IBD symptoms, reduce treatment adherence and lead to poorer outcomes. The Ezkerraldea-Enkarterri-Cruces Healthcare Organization in Spain has made a firm commitment to adopt the Value-Based Health Care (VBHC) model, which advocates for the incorporation of patient-perceived quality of life variables to the items we normally assess. The IBD Unit, in pursuit of adhering to the VBHC corporate programme, has launched on a process to analyze our health care delivery system and improve the effectiveness of our Performance Improvement Plan based on patients’ experience. Objectives: - To identify and systemize the incorporation of perceived quality of life variables - To reorient medical care towards what really matters to patients Methods We have built a multi-disciplinary team comprised of healthcare professionals involved in IBD management (Figure 1). Patients form the core of the team’s meetings, helping in the development of User Experience (Figure 2) and Empathy Maps (Figure 3) by using Design Thinking strategies. After the detection of the obstacles faced by patients, we outlined a Process Map (Figure 4), where we critically analyzed the route followed by patients in our health-care system before reaching the IBD Unit. Subsequently, a specific route was outlined considering the set proposed for the disease by the ICHOM consortium as a reference framework. Questionnaires and surveys were designed using patient information across different areas of care, in order to guarantee the correct functioning of the route. Results We obtained a list of 14 improvement proposals which are currently at different levels of evaluation. In our first year, we have been able to implement important modifications which include: - A specific remote consultation for IBD patients - Fast track pathways - Nutritional guidelines to assure compliance - Shortening waiting lists - Reduction in patient bureaucracy and paperwork - Virtual monitorization of patients with asymptomatic disease Conclusion - VHBC implementation implies a transformation of the organization - User Experience tools add a different perspective to the route design, focusing on what really matters to patients and improving their quality of life - This change of perspective is important, especially in chronic diseases, so that patients feel less lonely with their disease and better outcomes can be obtained

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