Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences.

Background: Studies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment. Purpose: This study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care. Methods: A qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis. Results: Four sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment. Conclusion: The study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.

Population-based Incidence of Myopericarditis After COVID-19 Vaccination in Danish Adolescents.

In this prospective nationwide multicenter study from Denmark, myopericarditis after Pfizer-BioNTech mRNA COVID-19 vaccination was identified in 13 males and 2 females between May 15 and September 15, 2021, among 133,477 vaccinated males and 127,857 vaccinated females 12-17 years of age, equaling 97 males and 16 females per million. In conclusion, the incidence of myopericarditis after COVID-19 vaccination among males appears higher than reports from the United States.

Improving the cost-effectiveness of laypersons' paediatric basic life support skills training: A randomised non-inferiority study.

AIM: To compare dyad (training in pairs without an instructor) with resource-intensive instructor-led training for laypersons' paediatric resuscitation skills in a non-inferiority trial and examine cost-effectiveness of the training methods. METHODS: In this randomised parallel group non-inferiority trial, 155 dyad and 175 instructor-led laypersons were trained in Basic Life Support and Foreign Body Airway Obstruction Management. Dyads were given instructional videos, hands-on exercises and provided feedback to their partner for 50 min. Instructor-led laypersons trained in groups of six for two hours. Learning were assessed in scenarios immediately after training and, subsequently, at 14 days, 1, and 3 months. Pass rates, cost-effectiveness of producing a competent layperson (passing both tests), and non-inferiority were analysed. RESULTS: Sixty-eight (45.6%) dyad and 130 (74.3%) instructor-led laypersons passed the basic life support test (p < 0.001). For Foreign Body Airway Obstruction Management 77 (54.2%) dyad and 130 (79.3%) for instructor-led laypersons passed (p < 0.001). Skills decreased over three months for both groups. Forty-two (30.4%) dyad and ninety-eight (59.8%) for instructor-led laypersons were competent after training (p < 0.001). The lower effectiveness of dyad training had reduced costs (p < 0.001). For each 10,000 USD allocated to training, dyad training would result in 71 vs. 65 competent laypersons for instructor-led training. Non-inferiority of dyad training could not be established. CONCLUSION: Instructor-led training was the most effective but also the most expensive training method, making it less cost-effective than dyad training. When the aim is to train for quantity rather than quality, dyad training would be the preferred choice of training method.

Assessment of laypersons' paediatric basic life support and foreign body airway obstruction management skills: a validity study.

BACKGROUND: Standardised courses for laypeople in Paediatric Basic Life Support (PBLS) and Foreign Body Airway Obstruction Management (FBAOM) teach essential skills for the initiation of resuscitation by bystanders. Performance assessments are necessary to ensure that skills are acquired. We aimed to examine the validity of developed performance assessments and to determine credible pass/fail standards. METHODS: Validity evidence was gathered in a standardised simulated setting by testing participants with three different levels of PBLS/FBAOM experience: untrained laypersons, trained laypersons, and lifeguards. Two blinded raters assessed participants' performance. The reliability of test scores was analysed using generalizability theory, scores were compared across the three groups, and pass/fail-standards were established. RESULTS: A total of 33 participants were included. More than two raters and two cases were necessary for PBLS to achieve a reliability coefficient above 0.80, which is considered the minimally acceptable level for high-stakes certification. For FBAOM, two tests or three raters were needed. Assessment scores differed across the three groups for PBLS skills, as well as for FBAOM skills (p < 0.001). Pass levels of 74% and 55% of the maximum score for PBLS and FBAOM, respectively, were identified as the levels that best discriminated between competent and non-competent laypersons. CONCLUSIONS: Laypersons' PBLS and FBAOM skills can be assessed in a reliable and valid way in a standardised simulated setting. However, multiple raters and scenario tests are needed to ensure sufficient reliability, which raises questions regarding the feasibility of performing certification tests for laypersons who participate in short paediatric resuscitation courses.

What should be included in the assessment of laypersons' paediatric basic life support skills? Results from a Delphi consensus study.

BACKGROUND: Assessment of laypersons' Paediatric Basic Life Support (PBLS) skills is important to ensure acquisition of effective PBLS competencies. However limited evidence exists on which PBLS skills are essential for laypersons. The same challenges exist with respect to the assessment of foreign body airway obstruction management (FBAOM) skills. We aimed to establish international consensus on how to assess laypersons' PBLS and FBAOM skills. METHODS: A Delphi consensus survey was conducted. Out of a total of 84 invited experts, 28 agreed to participate. During the first Delphi round experts suggested items to assess laypersons' PBLS and FBAOM skills. In the second round, the suggested items received comments from and were rated by 26 experts (93%) on a 5-point scale (1 = not relevant to 5 = essential). Revised items were anonymously presented in a third round for comments and 23 (82%) experts completed a re-rating. Items with a score above 3 by more than 80% of the experts in the third round were included in an assessment instrument. RESULTS: In the first round, 19 and 15 items were identified to assess PBLS and FBAOM skills, respectively. The ratings and comments from the last two rounds resulted in nine and eight essential assessment items for PBLS and FBAOM skills, respectively. The PBLS items included: "Responsiveness"," Call for help", "Open airway"," Check breathing", "Rescue breaths", "Compressions", "Ventilations", "Time factor" and "Use of AED". The FBAOM items included: "Identify different stages of foreign body airway obstruction", "Identify consciousness", "Call for help", "Back blows", "Chest thrusts/abdominal thrusts according to age", "Identify loss of consciousness and change to CPR", "Assessment of breathing" and "Ventilation". DISCUSSION: For assessment of laypersons some PBLS and FBAOM skills described in guidelines are more important than others. Four out of nine of PBLS skills focus on airway and breathing skills, supporting the major importance of these skills for laypersons' resuscitation attempts. CONCLUSIONS: International consensus on how to assess laypersons' paediatric basic life support and foreign body airway obstruction management skills was established. The assessment of these skills may help to determine when laypersons have acquired competencies. TRIAL REGISTRATION: Not relevant.

Pneumocystis jiroveci pneumonia prophylaxis during maintenance therapy influences methotrexate/6-mercaptopurine dosing but not event-free survival for childhood acute lymphoblastic leukemia.

Trimethoprim-sulfamethoxazole (TMP/SMX) is used in children with acute lymphoblastic leukemia (ALL) to prevent Pneumocystis pneumonia (PCP). We explored to which extent TMP/SMX influenced methotrexate (MTX)/6-mercaptopurine (6MP) dosage, myelosuppression, and event-free survival (EFS) during maintenance therapy. Of 447 study patients treated by the NOPHO ALL92 protocol, 120 patients received TMP/SMX continuously for 2-7 d/wk (TMP/SMX(2-7) ) and 287 patients never received TMP/SMX (TMP/SMX(never) ). Ten patients (all TMP/SMX(never) ) developed PCP, eight of which occurred within 7 months from the start of maintenance therapy. The TMP/SMX(2-7) group received lower oral 6MP doses than TMP/SMX(never) patients (50.6 vs. 63.9 mg/m(2) /d; P<0.001) but had lower absolute neutrophil counts (ANC) (median 1.7 vs. 2.0 × 10(9) /L; P<0.001). In Cox multivariate analysis, higher ANC levels (P=0.04) and male gender (P=0.06) were related to reduced EFS. ANC had no effect on EFS among TMP/SMX(2-7) patients (P=0.40) but did for TMP/SMX(never) patients (P=0.02). The difference in the effect on EFS between TMP/SMX(2-7) and TMP/SMX(never) patients was not significant (P=0.46). EFS did not differ between TMP/SMX(2-7) and TMP/SMX(never) patients (0.83 vs. 0.83; P=0.82). These results suggest that TMP/SMX is effective in preventing PCP and may have an antileukemic effect. TMP/SMX should be given the entire duration of maintenance therapy.