ABSTRACT
The purpose of this single-centre prospective non-randomised study was to evaluate the effectiveness of an interdisciplinary care programme to enhance self-management in patients with haematopoietic stem cell transplantation (HSCT). Patients undergoing HSCT, aged >14 years with informed consent were recruited (n = 79). Patients in the intervention group (IG) received standard care plus the SCION-HSCT intervention to counteract three problems after HSCT: muscle weakness, oral mucositis and malnutrition. Control group patients received standard care. Primary endpoint was global health-related quality of life (HRQoL) at discharge (EORTC QLQ C30 v. 3.0). Baseline characteristics were balanced between both groups, except physical performance (ECOG) being significantly lower for patients of the IG. At discharge, no group differences could be seen regarding HRQoL. Non-confirmatory post hoc analyses showed for patients of the IG a shorter duration of hospitalisation (MD -10.90; 95% CI -18.05 to -3.75) and increased activity during hospitalisation (MD 2.44; 95% CI 1.27-3.61). In conclusion, clinical effectiveness of the intervention could not be proven with respect to the aspired improvement of HRQoL. However, the nurse-led interdisciplinary caring programme could be carried out in every day ward routine. Further research should focus on working mechanisms of complex interventions aiming to improve HRQoL of patients undergoing HSCT.
Subject(s)
Hematopoietic Stem Cell Transplantation , Neoplasms/therapy , Patient Care Team , Self-Management/methods , Activities of Daily Living , Anti-Bacterial Agents/therapeutic use , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Exercise Therapy/methods , Female , Health Status , Hospitalization/statistics & numerical data , Humans , Male , Middle Aged , Muscle Relaxation/physiology , Muscle Strength/physiology , Nutritional Support/methods , Patient Satisfaction , Prospective Studies , Quality of Life , Stomatitis/prevention & control , Surveys and Questionnaires , Treatment OutcomeABSTRACT
In Germany and Austria, more than 90% of pediatric cancer patients are enrolled into nationwide disease-specific first-line clinical trials or interim registries. Essential components are a pediatric cancer registry and centralized reference laboratories, imaging review, and tumor board assistance. The five-year overall survival rate in countries where such infrastructures are established has improved from <20% before 1950 to >80% since 1995. Today, treatment intensity is tailored to the individual patient's risk to provide the highest chances of survival while minimizing deleterious late effects. Multicenter clinical trials are internationalized and serve as platforms for further improvements by novel drugs and biologicals.
Subject(s)
Neoplasms , Registries , Adolescent , Austria/epidemiology , Child , Child, Preschool , Clinical Trials as Topic/history , Clinical Trials as Topic/methods , Disease-Free Survival , Female , Germany/epidemiology , History, 20th Century , History, 21st Century , Humans , Infant , Male , Multicenter Studies as Topic/history , Multicenter Studies as Topic/methods , Neoplasms/diagnosis , Neoplasms/mortality , Neoplasms/therapy , Survival RateABSTRACT
We report on two patients with haemophiliac pseudotumours who did not respond to intensified factor replacement therapy. Therefore the pseudotumours had to be removed surgically in both cases.
Subject(s)
Calcinosis/diagnosis , Hematoma/diagnosis , Hemophilia A/diagnosis , Pelvis , Thigh , Adolescent , Calcinosis/genetics , Calcinosis/surgery , Child , Child, Preschool , DNA Mutational Analysis , Exons/genetics , Factor VIII/administration & dosage , Factor VIII/genetics , Follow-Up Studies , Hematoma/genetics , Hematoma/surgery , Hemophilia A/genetics , Humans , Infant , Introns/genetics , Magnetic Resonance Imaging , Male , Mutation, Missense/genetics , Pelvis/surgery , RNA Splicing/genetics , RNA, Messenger/genetics , Reoperation , Thigh/surgery , UltrasonographySubject(s)
Genetic Carrier Screening , Mutation, Missense/genetics , Paraplegia/genetics , Protein S Deficiency/genetics , Protein S/genetics , Quadriplegia/genetics , Spinal Cord/blood supply , Thromboembolism/genetics , Child , Diagnosis, Differential , Exons/genetics , Humans , Male , Paraplegia/diagnosis , Protein S Deficiency/diagnosis , Quadriplegia/diagnosis , Thromboembolism/diagnosisABSTRACT
OBJECTIVES: Translational medicine research needs a two-way information highway between 'bedside' and 'bench'. Unfortunately there are still weak links between successfully integrated information roads for bench, i.e. research networks, and bedside, i.e. regional or national health information systems. The question arises, what measures have to be taken to overcome the deficiencies. METHODS: It is examined how patient care-related costs of clinical research can be separated and shared by health insurances, whether quality of patient care data is sufficient for research, how patient identity can be maintained without conflict to privacy, how care and research records can be archived, and how information systems for care and research can be integrated. RESULTS: Since clinical trials improve quality of care, insurers share parts of the costs. Quality of care data has to be improved by introducing minimum basic data sets. Pseudonymization solves the conflict between needs for patient identity and privacy. Archiving patient care records and research records is similar and XML and CDISC can be used. Principles of networking infrastructures for care and research still differ. They have to be bridged first and harmonized later. CONCLUSIONS: To link information systems for care (bed) and for research (bench) needs technical infrastructures as well as economic and organizational regulations.
