4 research outputs found

    Needle phobia: How to improve the child\u27s experience during blood drawing

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    Pediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas for improvement, such as, the lack of information about the process of blood collection before testing, management of fear or pain, and characteristics of the physical space, among others. Regarding the quantitative approach, 277 persons (patients and families) were interviewed. And, although there were high levels of satisfaction among them about the blood drawing procedure, they also stressed the importance of the information received prior the test, the distraction techniques, and the physical space. From these results, we made different actions like information leaflets and fact sheets, distraction elements in the waiting room (wall vinyl, therapeutic dogs and clowns), and modification of the cabins. Although these results cannot be generalized to the population, they serve as an example of how to improve patient and family experience and include them in the decision-making process. In the current pandemic, further research should be done to adapt these results to the “new normal.” Experience Framework This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

    Needle phobia: How to improve the child's experience during blood drawing

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    Pediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas for improvement, such as, the lack of information about the process of blood collection before testing, management of fear or pain, and characteristics of the physical space, among others. Regarding the quantitative approach, 277 persons (patients and families) were interviewed. And, although there were high levels of satisfaction among them about the blood drawing procedure, they also stressed the importance of the information received prior the test, the distraction techniques, and the physical space. From these results, we made different actions like information leaflets and fact sheets, distraction elements in the waiting room (wall vinyl, therapeutic dogs and clowns), and modification of the cabins. Although these results cannot be generalized to the population, they serve as an example of how to improve patient and family experience and include them in the decision-making process. In the current pandemic, further research should be done to adapt these results to the “new normal.” Experience Framework This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

    Assessment of plasma chitotriosidase activity, CCL18/PARC concentration and NP-C suspicion index in the diagnosis of Niemann-Pick disease type C : A prospective observational study

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    Niemann-Pick disease type C (NP-C) is a rare, autosomal recessive neurodegenerative disease caused by mutations in either the NPC1 or NPC2 genes. The diagnosis of NP-C remains challenging due to the non-specific, heterogeneous nature of signs/symptoms. This study assessed the utility of plasma chitotriosidase (ChT) and Chemokine (C-C motif) ligand 18 (CCL18)/pulmonary and activation-regulated chemokine (PARC) in conjunction with the NP-C suspicion index (NP-C SI) for guiding confirmatory laboratory testing in patients with suspected NP-C. In a prospective observational cohort study, incorporating a retrospective determination of NP-C SI scores, two different diagnostic approaches were applied in two separate groups of unrelated patients from 51 Spanish medical centers (n = 118 in both groups). From Jan 2010 to Apr 2012 (Period 1), patients with ≄2 clinical signs/symptoms of NP-C were considered 'suspected NP-C' cases, and NPC1/NPC2 sequencing, plasma chitotriosidase (ChT), CCL18/PARC and sphingomyelinase levels were assessed. Based on findings in Period 1, plasma ChT and CCL18/PARC, and NP-C SI prediction scores were determined in a second group of patients between May 2012 and Apr 2014 (Period 2), and NPC1 and NPC2 were sequenced only in those with elevated ChT and/or elevated CCL18/PARC and/or NP-C SI ≄70. Filipin staining and 7-ketocholesterol (7-KC) measurements were performed in all patients with NP-C gene mutations, where possible. In total across Periods 1 and 2, 10/236 (4%) patients had a confirmed diagnosis o NP-C based on gene sequencing (5/118 [4.2%] in each Period): all of these patients had two causal NPC1 mutations. Single mutant NPC1 alleles were detected in 8/236 (3%) patients, overall. Positive filipin staining results comprised three classical and five variant biochemical phenotypes. No NPC2 mutations were detected. All patients with NPC1 mutations had high ChT activity, high CCL18/PARC concentrations and/or NP-C SI scores ≄70. Plasma 7-KC was higher than control cut-off values in all patients with two NPC1 mutations, and in the majority of patients with single mutations. Family studies identified three further NP-C patients. This approach may be very useful for laboratories that do not have mass spectrometry facilities and therefore, they cannot use other NP-C biomarkers for diagnosis
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