Background: Despite the well-organized follow up of Sickle Cell Disease patients in Northern countries, the knowledge of this chronic disease mostly relies on data collected during hospital stays or ...visits. There is scare patients reported data and little is known about the daily impact of the disease, assessed by the patient him or herself. Sickle-O-Scope is the first mobile phone application allowing patients with SCD and their families' caregivers to self-monitor the disease symptoms on a daily basis. The mobile app is able to save the daily records and to restitute results on Excel charts, ready to be sent. This qualitative survey presents how patients with sickle cell disease or caregivers perceive the benefits from the use of this first mobile app and their suggestions for improvement of this app
Method: 8 French speaking patients (n=7) and a caregiver (n=1), living in France had been enrolled in a qualitative survey to assess their satisfaction. They had been asked to use the mobile app, during 30 days. They had been submitted to a phone administrated questionnaire. The questionnaire comprises the Hospital Anxiety and Depression Scale, questions based on their expectations of symptoms following hospital stays or visits, their global satisfaction, their detailed satisfaction and the perceived benefit for their disease management.
Results: Results show that most of the participants have no sign of anxiety and depression. There is no significant before app/after app evolution of the anxiety and depression scores. Most of the participants are satisfied (75%) or very satisfied (25%) with this mobile app. All participants find the mobile app very easy to use and encounter no difficulty. The majority of participants (75%) find the mobile app useful for their follow up and think it could help them to have a better monitoring of their disease (62,5%). 75% of participants find it could facilitate the communication with their physician and 88% of them will be ready to use it on a daily basis if asked by the physician. All participants are ready to send data to their physicians and will recommend other patients or caregivers to use it. Only half of participants think that the monitoring of their symptoms could help them to avoid complications. Participants suggestions to improve the mobile app are: integrating a reminder of data collection, integrating an agenda of the hospital appointments, allowing a more precise pain localization, monitoring hemoglobin rate, indicating the name of used medicines.
Conclusion: This limited survey indicates that an app could be of interest for the patient follow-up and monitoring. Following these initial results, a second improved version was published. Further studies on a larger scale are ongoing to see what impact this type/sort of application can have on global health improvement.
Adjibi:ADDMEDICA: Consultancy. Meddeb:ADDMEDICA: Consultancy. Dauvergne:ADDMEDICA: Employment. Duguet:ADDMEDICA: Employment.
Thalidomide is effective in several cutaneous diseases. Peripheral neuropathy is the most important adverse event limiting its use. Its incidence rate and its relation to thalidomide doses remain ...unclear. We prospectively monitored 135 patients treated with thalidomide for various dermatologic diseases for 2 y in order to estimate the annual incidence rate and risk factors for neuropathy. Patients underwent standardized neurologic examination and nerve conduction studies prior to, and regularly during treatment. Risk factors for neuropathy were assessed using a Cox proportional-hazards model. Clinical and electrophysiologic evidence of a thalidomide-induced neuropathy were present in 25.2% of the patients; however, when considering all potential cases, this rate reached 55.6%. The incidence rate was maximal during the first year of treatment (20%). The risk of neuropathy was related to the daily dose whatever the duration of treatment (p<10-3). Considering a daily dose ≤50 mg per day as reference, the relative risk for thalidomide neuropathy was 8.2 for a daily dose comprised between 50 and 75 mg per day and 20.2 for a daily dose >75 mg per day (p<10-3). No neuropathy occurred for daily doses ≤25 mg per day. The neuropathy was subclinical in nearly a quarter of patients with such an adverse event. These data confirm the high rate of thalidomide neuropathy and identify the daily dose as the main risk factor. The risk of neuropathy seems to be negligible for doses less than 25 mg per day, whatever the duration of therapy.
Toxic epidermal necrolysis (TEN) is associated with a 30% death rate. Tumour necrosis factor a (TNF-α) has been implicated in the pathogenesis of TEN. Thalidomide is a potent inhibitor of TNF-α ...action. We did a double-blind, randomised, placebo-controlled study of thalidomide in TEN.
The patients received a 5-day course of thalidomide 400 mg daily or placebo. The main endpoint was the progression of skin detachment after day 7. Secondary endpoints were the severity of the disease, evaluated with the simplified acute physiology score (SAPS), and the mortality. TNF-α and interleukin 6 were measured.
The study was stopped because there was excess mortality in the thalidomide group—ten of 12 patients died compared with three of ten in the placebo group (Fisher's exact test with Katz's approximation, relative risk=2·78, p=0·03). After adjustment for SAPS, mortality remained significantly higher in the thalidomide group than in the placebo group (exact logistic regression mid-p=0·007; 95% CI for odds ratio 2·7 to infinity). Plasma TNF-α concentration was higher in the thalidomide group than the placebo group on day 2, though the difference was not significant (Wilcoxon rank-sum test p=0·07).
Even though few patients were included, our data suggest that thalidomide is detrimental in TEN, possibly because of a paradoxical enhancement of TNF-α production.
To evaluate treatment by thalidomide and identify predictive factors of survival, event free survival and response among patients with advanced multiple myeloma treated with thalidomide as single ...agent therapy.
Patients with advanced multiple myeloma (n=83) were treated with an oral dose of thalidomide (median 400 mg/day). At start of treatment, all patients had active disease and 58 (69%) had received at least one autologous transplantation.
With a median follow-up of 338 days (range, 247-629 days), 52 patients are alive, whereas 31 died between 8 and 150 days after the first administration of thalidomide. The response to thalidomide was considered as major in 11 patients (13%), partial in 29 patients (35%) and minor in 15 patients (18%), giving a total response rate of 66% (54 out of 83 patients). Thirteen patients had stable disease and 15 patients progressed. In multivariable analysis, age greater than 60 years, short interval between diagnosis and onset of thalidomide, requirement for red blood cell transfusion, IgA isotype, platelets' count <80 x 10(9)/l and serum albumin level <30 g/l at the start of thalidomide were associated with poor outcome. These three last factors produced a simplified prognostic model for patients with advanced myeloma and treated with thalidomide. Thus, among the 38 patients without any of these unfavorable risk features, one-year overall survival and event free survival were 87% and 78%. By contrast, the 43 patients with at least one unfavorable feature had one-year overall survival and event free survival of 40% and 32%, respectively (Log-Rank, P=0.0002 for both). Patients who received > or =34.4 g of thalidomide in the first 90 days of treatment had a better outcome than those who received <34.4 g. However, the mean received daily dose of thalidomide in the first 90 days has not been found to influence survival, event free survival or response. Short-term side effects of thalidomide were generally moderate.
Thalidomide is an effective treatment for patients with advanced myeloma, in particular, who have no poor-risk features. The poor results achieved by the other patients emphasize the need for prospective protocols using thalidomide in combination, especially with dexamethasone. In addition, further studies are needed to determine the optimal thalidomide dose and duration.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
7.
Thalidomide in patients with advanced multiple myeloma Yakoub-Agha, I; Moreau, P; Leyvraz, S ...
The hematology journal : the official journal of the European Haematology Association,
2000, Letnik:
1, Številka:
3
Journal Article
Recently, a report has suggested the efficacy and safety of thalidomide in refractory multiple myeloma. In an attempt to assess the efficacy and tolerance of thalidomide in advanced multiple myeloma ...(on behalf of the Intergroupe Franchophone dy Myelome (IFM)), we report the preliminary experience of the IFM with this drug.
Patients with advanced multiple myeloma (n=27) were treated with an oral dose of thalidomide (median 400 mg/day). At the start of treatment, all patients had active disease and 20 patients had received at least one autologous transplantation.
Median follow-up was 105 days from the first administration. The serum and/or urine levels of the M-component were reduced by at least 75% in four patients including one patient with a >90% reduction, by at least 50% in five patients and by at least 25% in three patients, giving a total response rate of 45% (12 out of 27 patients). Nine patients had stable disease and six patients had progressed disease. Short-term side-effects of thalidomide were generally moderate.
This study confirms that thalidomide is an effective agent in patients with advanced myeloma.
Experiments and computations are performed to assess the interfacial bonding between Cu and a poly-epoxy surface relevant to many applications. The surface of the poly-epoxy is characterized by X-ray ...photoelectron spectroscopy (XPS) and atomic force microscopy before and after ultrahigh vacuum Cu deposition. Modifications of the XPS spectra are observed, suggesting a strong interaction between specific C and O atoms of the surface with Cu. Density functional theory (DFT) calculations are then performed to simulate XPS spectra and to better understand bonding. DFT computations are performed in the framework of the uGTS methodology, which takes initial and final state effects into account, and allows to calculate chemical shifts between the different C 1s and O 1s molecular orbitals with good accuracy, for the pristine surface. DFT calculations are then set to determine the preferential adsorption sites of Cu on different sites of the polymer surface. Finally, XPS simulation of the C 1s and O 1s spectra with Cu adsorbed at these sites matches very well with the experimental spectra, indicating that Cu atoms interact preferentially with hydroxyls to form Cu–O–C bonds, stabilized by a transfer of 0.5 electrons from Cu to O; hence, Cu is partially oxidized.
A metal–polymer interface is pertinent to numerous technological applications, especially in spatial sectors. The focus of this work is to elaborate on the metallization process of the poly-epoxy ...surface with aluminum thin films, using atomistic details. To this end, X-ray photoelectron spectroscopy (XPS) under ultrahigh vacuum and density functional theory calculations are employed. The interfacial bonding between Al atoms and the poly-epoxide surface, represented by a dimer model, is studied by determining adsorption energies and by simulating XPS spectra. The latter simulations are mainly performed using the ΔKS method, taking into account the initial and the final state effects. Simulated atom-by-atom metal deposition on model epoxy systems is attempted to further elucidate energetics of metallization and preferential arrangement of metal atoms at the interface. A fair agreement obtained between XPS experiments and computations rationalizes the interaction mechanism at the atomic scale explaining the formation of the Al/poly-epoxy interface. Electronic structure properties highlight the charge transfer from the Al atom(s) to dehydrogenated model epoxy system.