Development of the patient experience questionnaire for parents of pediatric patients (PEQP)

Patient experience (PX) is an important evaluation criterion for quality in healthcare. Compared to patient satisfaction, however less research has focused on the development of instruments to measure experiences of patients and their families. In the article, we describe the process of developing a PX questionnaire for the parents of pediatric patients in the context of children's hospital and illustrate the questionnaire items for measuring PX. The phases of the development process included retrospective interviews, description of the themes influencing PX and the metrics for measuring PX, as well as iterative development of three versions of questionnaires including data gathering and factor analysis. The final versions of the surveys suggested for implementation at the hospitals include eight PX statements for the outpatient clinic and five statements for the ward. Compared to satisfaction surveys, the developed surveys emphasize the aspects of parent's attitude towards the illness, support for families, and daily arrangements with a child patient. © 2019 American Psychological Association Inc. All rights reserved.Peer reviewe

Evidence-based diagnosis and treatment of macrophage activation syndrome in systemic juvenile idiopathic arthritis

Background: Macrophage activation syndrome (MAS) is a severe and potentially lethal complication of several inflammatory diseases but seems particularly linked to systemic juvenile idiopathic arthritis (sJIA). Standardized diagnostic and treatment guidelines for MAS in sJIA are currently lacking. The aim of this systematic literature review was to evaluate currently available literature on diagnostic criteria for MAS in sJIA and provide an overview of possible biomarkers for diagnosis, disease activity and treatment response and recent advances in treatment. Methods: A systematic literature search was performed in MEDLINE, EMBASE and Cochrane. 495 papers were identified. Potentially relevant papers were selected by 3 authors after which full text screening was performed. All selected papers were evaluated by at least two independent experts for validity and level of evidence according to EULAR guidelines. Results: 27 papers were included: 7 on diagnosis, 9 on biomarkers and 11 on treatment. Systematic review of the literature confirmed that there are no validated diagnostic criteria for MAS in sJIA. The preliminary Ravelli criteria, with the addition of ferritin, performed well in a large retrospective case-control study. Recently, an international consortium lead by PRINTO proposed a new set of diagnostic criteria able to distinguish MAS from active sJIA and/or infection with superior performance. Other promising diagnostic biomarkers potentially distinguish MAS complicating sJIA from primary and virusassociated hemophagocytic lymphohistiocytosis. The highest level of evidence for treatment comes from case-series. High dose corticosteroids with or without cyclosporine A were frequently reported as first-line therapy. From the newer treatment modalities, promising responses have been reported with anakinra. Conclusion: MAS in sJIA seems to be diagnosed best by the recently proposed PRINTO criteria, although prospective validation is needed. Novel promising biomarkers for sJIA related MAS are in need of prospective validation as well, and are not widely available yet. Currently, treatment of MAS in sJIA relies more on experience than evidence based medicine. Taking into account the severity of MAS and the scarcity of evidence, early expert consultation is recommended as soon as MAS is suspected.Peer reviewe

Evidence-based diagnosis and treatment of macrophage activation syndrome in systemic juvenile idiopathic arthritis

Background: Macrophage activation syndrome (MAS) is a severe and potentially lethal complication of several inflammatory diseases but seems particularly linked to systemic juvenile idiopathic arthritis (sJIA). Standardized diagnostic and treatment guidelines for MAS in sJIA are currently lacking. The aim of this systematic literature review was to evaluate currently available literature on diagnostic criteria for MAS in sJIA and provide an overview of possible biomarkers for diagnosis, disease activity and treatment response and recent advances in treatment. Methods: A systematic literature search was performed in MEDLINE, EMBASE and Cochrane. 495 papers were identified. Potentially relevant papers were selected by 3 authors after which full text screening was performed. All selected papers were evaluated by at least two independent experts for validity and level of evidence according to EULAR guidelines. Results: 27 papers were included: 7 on diagnosis, 9 on biomarkers and 11 on treatment. Systematic review of the literature confirmed that there are no validated diagnostic criteria for MAS in sJIA. The preliminary Ravelli criteria, with the addition of ferritin, performed well in a large retrospective case-control study. Recently, an international consortium lead by PRINTO proposed a new set of diagnostic criteria able to distinguish MAS from active sJIA and/or infection with superior performance. Other promising diagnostic biomarkers potentially distinguish MAS complicating sJIA from primary and virusassociated hemophagocytic lymphohistiocytosis. The highest level of evidence for treatment comes from case-series. High dose corticosteroids with or without cyclosporine A were frequently reported as first-line therapy. From the newer treatment modalities, promising responses have been reported with anakinra. Conclusion: MAS in sJIA seems to be diagnosed best by the recently proposed PRINTO criteria, although prospective validation is needed. Novel promising biomarkers for sJIA related MAS are in need of prospective validation as well, and are not widely available yet. Currently, treatment of MAS in sJIA relies more on experience than evidence based medicine. Taking into account the severity of MAS and the scarcity of evidence, early expert consultation is recommended as soon as MAS is suspected.Peer reviewe

Definition and Validation of the American College of Rheumatology 2021 Juvenile Arthritis Disease Activity Score Cutoffs for Disease Activity States in Juvenile Idiopathic Arthritis

Export Date: 16 February 2023; Cited By: 10Peer reviewe

Lapsus-tutkimushanke: Näkökulmia lapsiperheen potilaskokemukseen: Suomi

Patient experience of children, adolescents and their families has been studied only a little. Patient experience is a multidimensional and ambiguous concept and thus, it is challenging to define and measure. Lapsus research project investigates the perspectives of pediatric patients and their families on hospital visits, received care and services, and the everyday life with the illness. The project is funded by Tekes and is closely related to the design of the New Children’s Hospital. Lapsus is a joint project of two universities, Aalto University and Tampere University of Technology, and three children’s hospitals, Hospital District of Helsinki and Uusimaa, Oulu University Hospital and Turku University Hospital. The aim of the research project is to promote that the experiences of the families with pediatric patients are taken into consideration when constructing new hospitals and improving healthcare services. From the scientific standpoint, the key objectives include describing the dimensions of patient experience from the perspectives of pediatric patients and their families, developing methodology and instrumentation for monitoring patient experience and value creation, and linking patient experience data to continuous improvement. The project consists of several sub-studies: A) The dimensions of the patient experience and patient journeys of families with pediatric patients, B) Questionnaires for measuring the patient experience of parents, C) Video diary as an instrument for studying the patient experience of adolescents, D) Photo elicitation method for studying children’s patient experience, E) Ecosystem’s role in patient experience, F) Collecting and utilizing patient feedback in children’s hospital. The research methods developed in the Lapsus project together with the practical experiences gained from the studies, help to understand which issues are meaningful and valuable for the patients and how patient experience data can be collected and utilized to improve the services of children’s hospital.Lasten ja nuorten sekä heidän perheidensä potilaskokemusta on tutkittu varsin vähän. Potilaskokemus on käsitteenä moniulotteinen ja monimerkityksellinen, minkä johdosta sen määritteleminen ja mittaaminen on haastavaa. Lapsus-tutkimushankkeessa selvitetään lapsipotilaiden ja heidän perheidensä näkökulmia sairaalakäynneistä, saaduista hoidoista ja palveluista sekä sairastamisen arjesta. Kolmivuotinen tutkimushanke on Tekesin rahoittama ja liittyy kiinteästi Uuden lastensairaalan toiminnalliseen kehittämiseen. Hankkeessa ovat mukana Aalto-yliopisto ja Tampereen Teknillinen yliopisto sekä Helsingin, Turun ja Oulun yliopistollisten sairaalojen lastenklinikat. Hankkeen tavoitteena on tukea lapsipotilasperheiden kokemusten huomioimista uusia sairaaloita rakennettaessa ja sairaalojen toimintaa kehitettäessä. Tutkimuksellisesta näkökulmasta keskeisimpiä tavoitteita ovat potilaskokemuksen ulottuvuuksien kuvaaminen lapsipotilaiden ja heidän perheidensä näkökulmasta, potilaskokemuksen ja arvonmuodostuksen seurantaan liittyvän metodiikan ja mittaristojen kehittäminen, sekä potilaskokemustiedon linkittäminen osaksi jatkuvaa parantamista. Hankkeen toteutus koostuu osatutkimuksista, joiden aiheita ovat A) Lapsipotilasperheen potilaskokemuksen ulottuvuudet ja potilaspolut, B) Potilaskokemuskyselyt vanhempien kokemusten mittaamiseksi, C) Videopäiväkirja nuorten potilaskokemusten tutkimusvälineenä, D) Valokuvamenetelmä lasten potilaskokemusten tutkimisessa, E) Ekosysteemi rakentamassa potilaskokemusta, F) Potilaspalautteen keruu ja hyödyntäminen lastensairaalassa. Lapsus-tutkimushankkeessa kehitetyt menetelmät ja tutkimuksesta saadut kokemukset auttavat ymmärtämään, minkälaiset asiat koetaan tärkeiksi ja arvokkaiksi, ja miten kokemustietoa voidaan kerätä ja hyödyntää lastensairaalan toiminnan kehittämisessä

The effect of infliximab plus methotrexate on the modulation of inflammatory disease markers in juvenile idiopathic arthritis: analyses from a randomized, placebo-controlled trial

Peer reviewe

Enhanced Discrimination of Malignant from Benign Pancreatic Disease by Measuring the CA 19-9 Antigen on Specific Protein Carriers

The CA 19-9 assay detects a carbohydrate antigen on multiple protein carriers, some of which may be preferential carriers of the antigen in cancer. We tested the hypothesis that the measurement of the CA 19-9 antigen on individual proteins could improve performance over the standard CA 19-9 assay. We used antibody arrays to measure the levels of the CA 19-9 antigen on multiple proteins in serum or plasma samples from patients with pancreatic adenocarcinoma or pancreatitis. Sample sets from three different institutions were examined, comprising 531 individual samples. The measurement of the CA 19-9 antigen on any individual protein did not improve upon the performance of the standard CA 19-9 assay (82% sensitivity at 75% specificity for early-stage cancer), owing to diversity among patients in their CA 19-9 protein carriers. However, a subset of cancer patients with no elevation in the standard CA 19-9 assay showed elevations of the CA 19-9 antigen specifically on the proteins MUC5AC or MUC16 in all sample sets. By combining measurements of the standard CA 19-9 assay with detection of CA 19-9 on MUC5AC and MUC16, the sensitivity of cancer detection was improved relative to CA 19-9 alone in each sample set, achieving 67–80% sensitivity at 98% specificity. This finding demonstrates the value of measuring glycans on specific proteins for improving biomarker performance. Diagnostic tests with improved sensitivity for detecting pancreatic cancer could have important applications for improving the treatment and management of patients suffering from this disease