Impact of a telenursing service on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized trial study protocol.

BACKGROUND: Pediatric rheumatic diseases have a significant impact on children's quality of life and family functioning. Disease control and management of the symptoms are important to minimize disability and pain. Specialist clinical nurses play a key role in supporting medical teams, recognizing poor disease control and the need for treatment changes, providing a resource to patients on treatment options and access to additional support and advice, and identifying best practices to achieve optimal outcomes for patients and their families. This highlights the importance of investigating follow-up telenursing (TN) consultations with experienced, specialist clinical nurses in rheumatology to provide this support to children and their families. METHODS/DESIGN: This randomized crossover, experimental longitudinal study will compare the effects of standard care against a novel telenursing consultation on children's and family outcomes. It will examine children below 16 years old, recently diagnosed with inflammatory rheumatic diseases, who attend the pediatric rheumatology outpatient clinic of a tertiary referral hospital in western Switzerland, and one of their parents. The telenursing consultation, at least once a month, by a qualified, experienced, specialist nurse in pediatric rheumatology will consist of providing affective support, health information, and aid to decision-making. Cox's Interaction Model of Client Health Behavior serves as the theoretical framework for this study. The primary outcome measure is satisfaction and this will be assessed using mixed methods (quantitative and qualitative data). Secondary outcome measures include disease activity, quality of life, adherence to treatment, use of the telenursing service, and cost. We plan to enroll 56 children. DISCUSSION: The telenursing consultation is designed to support parents and children/adolescents during the course of the disease with regular follow-up. This project is novel because it is based on a theoretical standardized intervention, yet it allows for individualized care. We expect this trial to confirm the importance of support by a clinical specialist nurse in improving outcomes for children and adolescents with inflammatory rheumatisms. TRIAL REGISTRATION: ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012)

The difference of disease perception by juvenile idiopathic arthritis patients and their parents : analysis of the JAMAR questionnaire.

BACKGROUND: The JAMAR (Juvenile Arthritis Multidimensional Assessment Report) has been developed to evaluate the perception of the patient and his parents on different items: well-being, pain, functional status, quality of life, disease activity, disease course, side effects of medication, therapeutic compliance and satisfaction with illness outcome. Our aim was to compare disease's perception by JIA patients and their parents. METHODS: We included into the study 100 consecutive patients over 7 years of age. We asked both parent and child to complete the JAMAR questionnaire. For each patient we recorded demographic and disease related data. We examined the level of disagreement between children and parents for the quantitative items of the JAMAR: VAS Pain, VAS Disease Activity, VAS Well Being, Juvenile Arthritis Functional Score, HRQoL. Then we looked for a relation between discordance-rate and demographic and clinical variables. RESULTS: Children and parents' median scores for all five items were similar. Individual dyads agreement was low, with a large amount of pairs (80) discordant for at least one item. We found higher MD VAS and JADAS in more discordant dyads, suggesting that when the disease is more active discordance between child and parent increase. CONCLUSION: The JAMAR questionnaire is an important tool that helps clinicians to detect divergent child and parent's disease perceptions. It is essential that both patients and parents fill the JAMAR questionnaire for a complete clinical and psychosocial evaluation

Impact of a nurse led telephone intervention on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized clinical trial.

Children suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics. Symptom management and monitoring of the course of the disease over time are important to minimize disability and pain. Poor disease control and anticipation of the need for treatment changes may be prompted by specialist medical follow-up and regular nurse-led consultations with the patient and families, in which information and support is provided. The purpose of this study was to evaluate the impact of a nurse-led telephone intervention or Telenursing (TN) compared to standard care (SC) on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their parents. A multicentered, randomized, longitudinal, crossover trial was conducted with pediatrics outpatients newly diagnosed with inflammatory rheumatic diseases. Participants were randomly assigned to two groups TN and SC for 12 months and crossed-over for the following 12 months. TN consisted of providing individualized affective support, health information and aid to decision making. Satisfaction (primary outcome) and health outcomes were assessed with the Client Satisfaction Questionnaire-8 and the Juvenile Arthritis Multidimensional Assessment Report, respectively. A mixed effect model, including a group x time interaction, was performed for each outcome. Satisfaction was significantly higher when receiving TN (OR = 7.7, 95% CI: 1.8-33.6). Morning stiffness (OR = 3.2, 95% CI: 0.97-7.15) and pain (OR = 2.64, 95% CI: 0.97-7.15) were lower in the TN group. For both outcomes a carry-over effect was observed with a higher impact of TN during the 12 first months of the study. The other outcomes did not show any significant improvements between groups. TN had a positive impact on satisfaction and on morning stiffness and pain of children with inflammatory rheumatic diseases and their families. This highlights the importance of support by specialist nurses in improving satisfaction and symptom management for children with inflammatory rheumatisms and their families. ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012)

Building a transitional care checklist in rheumatology: A Delphi-like survey.

To design a transitional care checklist to be used by and facilitate the work of health professionals in providing transitional care for children with a chronic rheumatologic disease and their families. A Delphi-like study among an international expert panel was carried out in four steps: (1) a working group of 6 specialists established a draft; (2) a web-survey among a panel of international experts evaluated it; (3) a 2-day consensus conference with an expert panel discussed items not reaching agreement; (4) a web-survey among the panel of international experts with the list of reformulated items. The first draft of the checklist included 38 items in 3 phases of transition and 5 age groups. Thirty-three international experts evaluated the checklist reaching≥80% agreement for 26 items and ≤80% for 12. The consensus conference of 12 experts discussed and redefined the 12 items. Twenty-five international experts filled out the web-survey and all items reached a minimum of 80% agreement except one. The final checklist was reached. This Delphi-like study defined what themes should be included and at what age they need to be addressed with patients with a chronic rheumatology disease and their families during transition. This checklist reached a strong international and interdisciplinary consensus while examining transition in a broad way. It should now be spread widely to health professionals to be used by all those who care for adolescents aged≥12 years at times of transition. It could be transposed to most chronic conditions. Recommendations for further research are given

RefGenes: identification of reliable and condition specific reference genes for RT-qPCR data normalization

Background RT-qPCR is a sensitive and increasingly used method for gene expression quantification. To normalize RT-qPCR measurements between samples, most laboratories use endogenous reference genes as internal controls. There is increasing evidence, however, that the expression of commonly used reference genes can vary significantly in certain contexts. Results Using the Genevestigator database of normalized and well-annotated microarray experiments, we describe the expression stability characteristics of the transciptomes of several organisms. The results show that a) no genes are universally stable, b) most commonly used reference genes yield very high transcript abundances as compared to the entire transcriptome, and c) for each biological context a subset of stable genes exists that has smaller variance than commonly used reference genes or genes that were selected for their stability across all conditions. Conclusion We therefore propose the normalization of RT-qPCR data using reference genes that are specifically chosen for the conditions under study. RefGenes is a community tool developed for that purpose. Validation RT-qPCR experiments across several organisms showed that the candidates proposed by RefGenes generally outperformed commonly used reference genes. RefGenes is available within Genevestigator at http://www.genevestigator.com

Thyrotroph Embryonic Factor Regulates Light-Induced Transcription of Repair Genes in Zebrafish Embryonic Cells

Numerous responses are triggered by light in the cell. How the light signal is detected and transduced into a cellular response is still an enigma. Each zebrafish cell has the capacity to directly detect light, making this organism particularly suitable for the study of light dependent transcription. To gain insight into the light signalling mechanism we identified genes that are activated by light exposure at an early embryonic stage, when specialised light sensing organs have not yet formed. We screened over 14,900 genes using micro-array GeneChips, and identified 19 light-induced genes that function primarily in light signalling, stress response, and DNA repair. Here we reveal that PAR Response Elements are present in all promoters of the light-induced genes, and demonstrate a pivotal role for the PAR bZip transcription factor Thyrotroph embryonic factor (Tef) in regulating the majority of light-induced genes. We show that tefβ transcription is directly regulated by light while transcription of tefα is under circadian clock control at later stages of development. These data leads us to propose their involvement in light-induced UV tolerance in the zebrafish embryo

All Optical Up-Conversion of WLAN signal in 60 GHz Range with Side-Band Suppression

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