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Personal identifiers in medical research networks: evaluation of the personal identifier generator in the Competence Network Paediatric Oncology and Haematology
Glock, Jutta,Herold, Ralf,Pommerening, Klaus
GMS Medizinische Informatik, Biometrie und Epidemiologie , 2006,
Abstract: The Society for Paediatric Oncology and Haematology (GPOH) and the corresponding Competence Network Paediatric Oncology and Haematology conduct various clinical trials. The comprehensive analysis requires reliable identification of the recruited patients. Therefore, a personal identifier (PID) generator is used to assign unambiguous, pseudonymous, non-reversible PIDs to participants in those trials. We tested the matching algorithm of the PID generator using a configuration specific to the GPOH. False data was used to verify the correct processing of PID requests (functionality tests), while test data was used to evaluate the matching outcome. We also assigned PIDs to more than 44,000 data records from the German Childhood Cancer Registry (GCCR) and assessed the status of the associated patient list which contains the PIDs, partly encrypted data items and information on the PID generation process for each data record. All the functionality tests showed the expected results. Neither 14,915 test data records nor the GCCR data records yielded any homonyms. Six synonyms were found in the test data, due to erroneous birth dates, and 22 synonyms were found when the GCCR data was run against the actual patient list of 2579 records. In the resulting patient list of 45,693 entries, duplicate record submissions were found for about 7% of all listed patients, while more frequent submissions occurred in less than 1% of cases. The synonym error rate depends mainly on the quality of the input data and on the frequency of multiple submissions. Depending on the requirements on maximally tolerable synonym and homonym error rates, additional measures for securing input data quality might be necessary. The results demonstrate that the PID generator is an appropriate tool for reliably identifying trial participants in medical research networks.
Protocol on the constipation in an oncology palliative care unit
Montserrat Cordero Ponce,Isabel María Romero Sánchez
NURE Investigación , 2008,
Abstract: Constipation is a problem relatively common even in healthy people, mainly in the western world, influenced mainly by the nutritional diets and the diminution of the physical activity. It is a symptom of difficult valuation by its subjective nature and the difficulty to establish a normality pattern.The incidence is high. It is observed in a 70 - 80% of the patients in terminal situation, the 40 - 50% of the patients with disease outpost and in 90% of the patients dealing with opiate.As nurses in of a palliative care unit we detected the high number of patients which they present/display the symptom and the time that takes in its diagnose and treatment, increasing the incidence-appearance of fecal impactación and intestinal obstruction. It is one of the symptoms that worry to our patients more.We take too frequently the “rectal measures,” being more painful and a little shameful for these patients, instead of using preventive measures, precocious oral treatment and continuous evaluation of the symptom. The knowledge that these patients have of the constipation is in many deficient cases. In order to be able to educate and to take care of to the oncology terminal patient in terminal state with constipation it is essential that we know its physiopathology, causes and complications. Also we will deepen in the most suitable treatment according to the consistency, the effort that the patient must make when defecating and the symptoms that presents/displays, trying that the treatment is customized and individual, although starting off of a previous protocol of performance decided by the health professionals who are going to treat the patient.
Information needs of neuro-oncology patients and their caregivers: a pilot study  [PDF]
Khryshchuk, Olga
Tobacco Control and Public Health in Eastern Europe , 2012,
Abstract: BACKGROUND: Patients with primary brain tumors (PBT) often have acute depression, anxiety and complications of social adaptation. The goal of this study was to examine difficulties and information needs of patients with PBT and their caregivers during diagnostic and treatment period. METHODS: Thirteen in-depth interviews were conducted with convenience sample of nine patients and four caregivers who were under treatment in the Kyiv “Feofaniya” clinic in October 2011 – April 2012. Convenience strategy was used because of poor availability of the target group. Data collection was stopped when saturation was achieved.RESULTS: PBT patients and their caregivers need information about diagnosis and prognosis, while uncertainty about the future is increased due to a long diagnostic period and delayed contacts with neuro-oncology professionals. In making decision, patients rely on the doctors, which confirms the paternalistic relationships. Most patients avoid talking about their feelings with the family and tend to deny the change of roles in the family due to illness. Those who consider chances of recovery as high express need for psychological support, but those who are emotionally suppressed and scared, don’t want to discuss their state with professionals. Caregivers also experience increased responsibility and fear about the future. Possibly, religious patients have lower information needs and willingness to discuss the disease and its treatment with the doctor. CONCLUSIONS: During the diagnostics patients face problems of uncertainty regarding the diagnosis, the availability of appropriate health professional, and the treatment strategy. Communication with doctor and quality of information provided to the patient is important as well as professional psychological support for patients and their caregivers. Limitations of the study include poor sample strategy, all participants were recruited from a single clinic, which is not the typical for Ukraine, there was no possibility to suggest help when such need was expressed by the respondents.
Exploring the Composition of Unit Test Suites  [PDF]
Bart Van Rompaey,Serge Demeyer
Computer Science , 2007,
Abstract: In agile software development, test code can considerably contribute to the overall source code size. Being a valuable asset both in terms of verification and documentation, the composition of a test suite needs to be well understood in order to identify opportunities as well as weaknesses for further evolution. In this paper, we argue that the visualization of structural characteristics is a viable means to support the exploration of test suites. Thanks to general agreement on a limited set of key test design principles, such visualizations are relatively easy to interpret. In particular, we present visualizations that support testers in (i) locating test cases; (ii) examining the relation between test code and production code; and (iii) studying the composition of and dependencies within test cases. By means of two case studies, we demonstrate how visual patterns help to identify key test suite characteristics. This approach forms the first step in assisting a developer to build up understanding about test suites beyond code reading.
An investigation into the spiritual needs of neuro-oncology patients from a nurse perspective  [cached]
Nixon Aline Victoria,Narayanasamy Aru,Penny Vivian
BMC Nursing , 2013, DOI: 10.1186/1472-6955-12-2
Abstract: Background Spiritual needs of cancer patients should be assessed and discussed by healthcare professionals. Neurosurgical nurses need to be able to assess and support neuro-oncology patients with their spiritual needs from diagnosis and throughout their hospital stay. Methods Data were collected through questionnaires using a Critical Incident Technique (CIT) from neurosurgical nurses, findings were analysed using thematic analysis. Results Nurses reported some awareness of their patients’ spiritual needs during their stay on neurosurgical units although some used expressions approximating what could be described as spiritual needs. Patients’ spiritual needs were identified as: need to talk about spiritual concerns, showing sensitivity to patients’ emotions, responding to religious needs; and relatives’ spiritual needs included: supporting them with end of life decisions, supporting them when feeling being lost and unbalanced, encouraging exploration of meaning of life, and providing space, time and privacy to talk. Participants appeared largely to be in tune with their patients’ spiritual needs and reported that they recognised effective strategies to meet their patients’ and relatives’ spiritual needs. However, the findings also suggest that they don’t always feel prepared to offer spiritual support for neuro-oncology patients. Conclusions There is a need for healthcare professionals to provide spiritual care for neuro-oncology patients and their relatives. Although strategies were identified that nurses can use to support patients with spiritual needs further research is required to explore how effective nurses are at delivering spiritual care and if nurses are the most appropriate professionals to support neuro-oncology patients with spiritual care.
A positioning pillow to improve lumbar puncture success rate in paediatric haematology-oncology patients: a randomized controlled trial
Perrine Marec-Bérard, Alvine Bissery, Kamila Keba?li, Matthias Schell, Fran?oise Aubert, Ségolène Gaillard, Muriel Rabilloud, Behrouz Kassa?, Catherine Cornu
BMC Cancer , 2009, DOI: 10.1186/1471-2407-9-21
Abstract: Children aged 2–18 years undergoing LP were randomly assigned to a positioning pillow or no intervention. The primary outcome was the rate of success, i.e. achieving the LP (sampling or injection) at the first attempt, without bleeding (RBC < 50/mm3). The secondary outcomes included: the child's pain, assessed by a self-administered visual analogical scales (VAS) for children over 6 years of age; the parents' and caregivers' perception of the child's pain; the satisfaction of the children, the parents, the caregivers and the physician. The child's cooperation and the occurrence of post-LP syndrome were also evaluated.124 children (62 in each group) were included. The LP pillow tended to increase the success rate of LPs (67% vs. 57%, p = 0.23), and decreased the post-LP syndromes (15% vs. 24%, p = 0.17) but the differences were not statistically significant. In children over 6-year of age (n = 72), the rate of success was significantly higher in the pillow group (58.5% vs. 41.5%, p = 0.031), with a tendency to feel less pain (median VAS 25 vs. 15 mm, p = 0.39) and being more satisfied (84.4% vs. 75.0%, p = 0.34).Overall results do not demonstrate a benefit in using this pillow for lumbar punctures. This study results also suggest a benefit in the sub group of children over 6-year of age; this result needs confirmation.The trial was registered with Clinical Trials.gov (number NCT00775112).Lumbar punctures (LP) are commonly performed for diagnosis or treatment purposes in children with cancer or haematological diseases. Anaesthesia or deep sedation is not recommended in France for lumbar punctures [1]. Because of lack of anaesthesia, appropriate body posture, muscle relaxation, and quietness of the child are important determinants of the success of the LP. When LPs are performed in a good position, pain is well controlled by local anaesthesia. A good positioning of the child usually requires the presence of at least 3 attendees: one to hold the child, one to perform th
Dental approach in the pediatric oncology patient: characteristics of the population treated at the dentistry unit in a pediatric oncology brazilian teaching hospital
Carrillo, Camila;Vizeu, Heloisa;Soares-Júnior, Luis Alberto;Fava, Marcelo;Odone Filho, Vicente;
Clinics , 2010, DOI: 10.1590/S1807-59322010000600002
Abstract: objectives: the objective of this paper was to characterize the population seen at the dentistry unit of the hematology-oncology service of the oncology-hematology service, instituto da crian?a at the hospital das clínicas, faculdade de medicina, universidade de s?o paulo. oral problems resulting from cancer therapy increase the risk of infection, length of hospital stay, treatment cost and negative impact on the course and prognosis of the disease. method: of the 367 medical records of cancer patients seen from november 2007 until december 2008: 186 with a cancer diagnosis and complete clinical data were selected, while 20 with a cancer diagnosis and incomplete records were excluded; 161 medical records with only hematological diagnosis were also excluded. the following characteristics were assessed: ethnicity, gender, age, diagnosis and characteristics of the neoplasm, cancer therapy status and performed dental procedures. results: review of 1,236 visits indicated that 54% (n=100) of the patients had blood cancers, 46% (n=86) had solid tumors and 63% were undergoing anticancer therapy. the proportion of males (52.7%) in the study population was slightly greater. the most common cancer was acute lymphocytic leukemia (32.2%). cancer occurred more often among those patients aged 5 to 9 years. the most common dental procedures were restorative treatment, preventive treatment and removal of infectious foci. conclusion: the characteristics of the studied population were similar to those of the general brazilian and global populations, especially regarding gender and diagnosis distributions. the aim of implementation of the dentistry unit was to maintain good oral health and patients' quality of life, which is critical to provide oral care and prevent future oral problems.
Prevalence and Prognosis of Relapse of Nephroblastoma at the Pediatric Oncology Unit of Bamako  [PDF]
F. L. F. Diakité, P. Togo, A. K. Doumbia, F. Traoré, M. Traoré, K. Sacko, C. O. Coulibaly, N. L. Traoré, A. Touré, B. Maiga, L. N. Sidibé, D. Konaté, A. Diall, A. Dembélé, C. O. Coulibaly, C. B. Traoré, B. Togo
Open Journal of Pediatrics (OJPed) , 2019, DOI: 10.4236/ojped.2019.94031
Abstract: The nephroblastoma is the third pediatric cancer in Mali, this study aimed to describe the prevalence and prognosis of nephroblastoma relapses. Methods: It was a descriptive retrospective study over a 10-year period from January 2005 to March 2015. We collected children aged 0 to 15 years followed for relapse of nephroblastoma in the pediatric oncology unit of university hospital center (UHC) Gabriel Toure. Results: The frequency of relapse of nephroblastoma was 7.4% (19 cases) whose mean age was 42 months with a sex ratio of 1.3. The relapse occurred before the end of the postoperative course in 16% of cases (3 patients). It was local recurrence in 52% of cases (10 patients), pulmonary 16% (3 patients), and hepatic 11% (2 patients). According to the SIOP classification, 47% of patients were diagnosed in stage III (9 patients) and 21% (4 patients) in stage IV. The tumor was high risk in 37%. Palliative chemotherapy was performed in 63% of the patients (12 patients) and the remaining seven were put on a high risk diet. The overall survival at 5 years was 21% or 4 patients. Conclusion: Our results showed all the difficulties in the management of nephroblastoma relapses in our context.
Exploring the challenges of developing digital literacy in the context of special educational needs communities
Peter Williams
ITALICS , 2006,
Abstract: This paper examines the impact of ‘digital literacy’ in the context of people with moderate to severe learning difficulties. The authors are part of a research consortium developing ‘Project @PPLe: Accessibility and Participation in the World Wide Web for People with Learning Disabilities’, funded by the Economic and Social Research Council’s (ESRC). Project @PPLe aims to explore how people with learning disabilities can access and participate in, and be empowered by, the range of opportunities presented by the digital environment. To meet this aim a multimedia Learning Environment (LE), providing learning resources and tools for self-advocacy, is being developed and tested with young people with learning difficulties, teachers and support-staff. The LE aims to provide routes to learning materials and accessible content for learners matched to individual needs and preferences by a sophisticated content management system underpinned by a range of accessibility, cognitive and pedagogical taxonomies. Although carers, teachers and other supporters are often required to aid the learners in both their online and other tasks, the LE is being developed to facilitate independent use by even those with quite pronounced learning difficulties. In order to develop this system, a usability study was undertaken, partly to inform the software developers with regard to the interface and structure of the particular LE being created, partly to develop a taxonomy of user behaviour to inform this, and also partly to generalise from the findings to inform the wider aim of providing the authoritative guidelines for e-learning and information literacy in the context of special educational needs. This paper explores how a methodology for examining usability was developed, and in particular, the challenges raised by the provision of independent learning for young people with cognitive disabilities.
The accompaniment needs of the family with a loved one in the critical care unit
Charnell Quinton,Dalena van Rooyen,Johanita Strümpher
Health SA Gesondheid , 2003, DOI: 10.4102/hsag.v8i1.118
Abstract: Nurses have unique opportunities to create environments where patient and family needs can be met. Opsomming Verpleegkundiges het ‘n unieke geleentheid om ‘n omgewing te skep waar daar aan die behoeftes van beide die pasi nte en hul gesinslede voldoen word. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.
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