Advice For Children Research Articles

Care at Your Fingertips: Codesign, Development, and Evaluation of the Oncology Hub App for Remote Symptom Management in Pediatric Oncology

To codesign, develop, and evaluate a smartphone app that includes patient-reported measures of symptoms and real-time advice in children's cancer. The Oncology Hub is a comprehensive approach to symptom management that includes a suite of codesigned tools and resources including clinical algorithms to determine the level of concern, symptom management advice, and resources for families of children with cancer. The evaluation involved Think Aloud interviews with parent and adolescent patients to complete tasks in the app as well as a User Experience questionnaire (score range, 0-120) and qualitative feedback. The accuracy of algorithms was determined by repeated testing of inputs and outputs over 4 weeks. Design and wireframes were iteratively refined through consultation with parents and adolescents confirming the final design. Beta testing evaluation was then completed by 25 participants including two adolescents. Across all participants, 84% of tasks were easy to navigate, and the Oncology Hub demonstrated high usability, usefulness, and acceptability with participants' scores ranging between 90 and 120 (mean = 112.2, standard deviation = 9.43). Qualitative feedback was positive. Testing of algorithms identified inconsistencies in understanding between clinical research and coding teams; refinements were made until the expected response notifications were returned with 100% accuracy. Technology offers new ways to think about how clinicians and families communicate and share information to harness the best of community and hospital services. Understanding how information is exchanged using health apps, and how this affects clinical workflow is critical to successful implementation, and optimizing symptom assessment and management in children with cancer.

N08 The influence of the Covid-19 epidemic on access to medical advice for children with Inflammatory Bowel Disease (IBD), based on patients from The Children’s Memorial Health Institute, Warsaw (IPCZD)

BackgroundCOVID -19 significantly affected all levels of medical care as well as access to medical care for children with Inflammatory Bowel Diseases (IBD).The purpose of the study was to investigate how the Covid-19 epidemic influenced on the access to medical care for children with IBD, on the quality of medical care during this period and on the health of young patients.MethodsThe analysis was based on the results of the questionnaire containing 15 questions addressed to the parents of children with IBD. The questions concerned mainly access to GP consultations and gastroenterology consultations, but also access to medicines and parents’ concerns about the health of children during the pandemic.Since December 2020, 150 questionnaires have been sent to parents of children with IBD. 72 completed questionnaires were returned and 60 of them were included into the analysis (12 were excluded due to lack of complete data). The T-Student test was used for statistical analysis.ResultsOnly 5 % of respondents (n=3) stated that the pandemic had no impact on access to a GP, as many as 83% (n = 50) indicated that the epidemic made access to primary care physicians very difficult.Changes in access to health care during the Covid-19 epidemic caused anxiety about further treatment of the child in 96.7% (n = 58, p<0,05) of the surveyed parents.In The Children’s Memorial Health Institute due to the limitations of visits related to the development of the pandemic, telemedicine was introduced on a large scale. Due to the easy access to medical telepaths and the resulting, if necessary, outpatient visits, the respondents assessed the access to medical consultations of doctors from the IBD team in IPCZD as much better than before the pandemic 58% (n = 35, p<0,05) or no changes compared to the time before the pandemic 42% (n = 25). 90% (n=54) of the surveyed parents indicated that they would also like to use telemedicine after the epidemic as an alternative to some hospital visits.Statistical analysis also showed a correlation between difficulties with access to specialized medications during a pandemic and the occurrence of an exacerbation of the disease in a child during that period.Out of the 40 (67%) group of parents who showed difficulties in purchasing medicines for their children in the survey, as many as 75% (n = 30, p <0.05) reported exacerbation of the disease during the epidemic.ConclusionBased on the above results, we concluded that the pandemic had a major impact on access to medical care as well as on access to specialized medications. In The Children’s Memorial Health Institute, thanks to the development of telemedicine, access to specialist care in the IBD team has not changed.

Impact of the COVID-19 pandemic on access to the cerliponase alfa managed access agreement in England for CLN2 treatment

BackgroundCerliponase alfa, an enzyme replacement therapy for neuronal ceroid lipofuscinosis type 2 (CLN2), is currently available in England through a managed access agreement (MAA). It is administered every 2 weeks via an intracerebroventricular device. Here we report qualitative research with families of children with CLN2 disease and healthcare professionals (HCPs) who run the MAA, to understand how access to cerliponase alfa via the MAA at Great Ormond Street Hospital (GOSH) in London, and the overall management of CLN2 disease, was affected during the coronavirus disease 2019 (COVID-19) pandemic.MethodsTelephone interviews were conducted with nine families, representing 11 children with CLN2 disease, and two HCPs in November and December 2020.ResultsChildren had received cerliponase alfa treatment for a mean (SD) of 23.1 ± 24.7 months (7.1 ± 4.6 months in the MAA). Families travelled 7–398 km for treatment (mean 210 ± 111 km). Treatment with cerliponase alfa was designated “essential” by GOSH and continued as normal during the pandemic but with extra safety precautions, and no children missed any treatments. Families were highly motivated to continue treatment, despite considerable anxiety about the risk of coronavirus infection from travelling and staying overnight but were reassured by communications from GOSH and the safety precautions put in place. Support therapy services were widely compromised, causing families concern about deterioration in their children’s condition. Families were confused about COVID-19 testing and shielding, and were unclear whether children with CLN2 disease were vulnerable to COVID-19.ConclusionsLooking forward, advice for children with CLN2 disease should be specific and tailored, taking into account the family unit. Support therapies should be considered essential alongside cerliponase alfa treatment.

Top Tips on How to Support Care-Experienced Young People in Higher Education

The Care Leaver Covenant is a national programme to support care leavers to live independently. The programme and its partner organisations put together this advice for children's services professionals and universities on what good practice looks like

P515 A 12-week tailored physical training program including dietary advice in children with Inflammatory Bowel Disease: a randomized crossover trial

BackgroundInflammatory Bowel Disease (IBD) is a chronic inflammatory disease of the gastrointestinal tract. Recently, physical activity has been suggested to improve the quality of life and course of disease in adult IBD patients. The aim of this study was to investigate physical functioning in paediatric IBD patients and to determine the effects of a tailored 12-week lifestyle intervention including a physical training program.MethodsFigure 1 shows our study design and measurements. The tailored 12-week lifestyle intervention consisted of 3 strenuous physical training sessions a week and dietary advice. Effects on exercise capacity, endurance, physical activity levels, disease activity, quality of life, and fatigue were measured in paediatric IBD patients. Mild disease activity was defined as a PCDAI between 10 - 27.5 or PUCAI between 10 - 34. ResultsSixteen paediatric IBD patients (median age 15 [9 - 17]) were included, 13 patients successfully completed the training program, 2 patients are still participating. At baseline, most patients had mild disease activity (n=9). Patients had reduced exercise capacity (76.8%±17.7% of predicted PeakVO2 , and reduced physical activity levels as shown by 80.3%±7.4% of measured time being spent in sedentary activity. PCDAI/PUCAI scores decreased significantly over the intervention period (13.8±11.7 vs. 3.65±4.5, P=0.002). Fecal calprotectin also decreased significantly (400 [18–3089] vs. 128 [20–2704], P=0.041). All patients but one had no changes in medical regimens before or during the lifestyle intervention that could have influenced disease activity. After the 12-week lifestyle intervention period, 9 out of 13 patients were in clinical remission. Maximum walked distance increased significantly (503±69 vs. 540±77 meters, P=0.001), although PeakVO2 and percentage of time spent in moderate-to-vigorous activity did not. Patients improved on overall quality of life measured by the Impact III questionnaire (+2.4 points, p=0.017). The Child Health Questionnaire showed a significant improvement on the child-reported physical functioning scale and on 5 parent-reported scales of quality of life. Child-reported fatigue measured by the PedsQol MFS did not improve significantly, parents-reported fatigue did. No changes were found on mentioned outcomes during the control period. After baseline measurements, the COVID-19 lock-down period started, possibly affecting normal daytime activities of the patients during the lifestyle intervention period.ConclusionA 12-week tailored physical training program including dietry advice is safe and beneficial for paediatric IBD patients and may contribute to better control of inflammation.

Leave against Medical Advice in Children: Rural Indian Perspective.

To determine the burden and etiological factors of leave against medical advice (LAMA) in Indian children. In this prospective study, legal guardians of 528 patients who took the decision of LAMA were interviewed (using structured question answers based multi-option) and data were captured over a period of 16 months. The resultant database was analyzed using standard statistical methods. About 6.12% of childhood LAMA cases were dealt out of total pediatric admission including newborns. Neonatal preponderance noted in cases of LAMA from intensive care unit (ICU; 57.14%, p < 0.05). The overall male (n = 293) to female (n = 235) ratio in this study was 1.25:1. Number of LAMA patients was higher from rural area (83.33%), mostly admitted in ICU (93.65%, Pearson's chi-squared test, p < 0.05). Higher proportion (29.47%) of patients with infection availed LAMA from neonatal age group but overall LAMA patients fall under category of respiratory disorders (22.35%). Interest of the domestics issues other than suffering child was considered primary during LAMA for those admitted in ward as compared with ICU patients [odds ratio (OR): 1.73, CI: 1.02-2.94, p < 0.05]. ICU patients were reportedly to be taken to private health care facility (OR: 1.93, CI: 1.06-3.49, p < 0.05). Duration of stay before taking LAMA from ward was <7 days (85.59%, OR: 0.19, CI: 0.11-0.35, p < 0.05). Upper-lower socio-economic class attributed financial constraint as the main reason for LAMA (Pearson's chi-squared test, Chi-square value: 152.23, p < 0.05). This study tried to elucidate the determinants of childhood LAMA in rural Indian setting.

Bringing together child health professionals and dental experts to tackle oral health in children.

In the UK, poor oral health among children continues to be a major public health concern. Primary care professionals are encouraged to take a proactive approach in engaging parents and carers to develop better oral health practices for their children. Unfortunately, research has shown that patients are often exposed to inconsistent and at worst conflicting advice. To increase the confidence of primary care professionals in their knowledge surrounding preventative oral health and ensure the delivery of consistent and proactive oral health advice. A local dentist and dental health educator were invited to a general practice multidisciplinary meeting to deliver an educational session on oral health advice for children. Qualitative and quantitative data in form of a questionnaire was collected to analyse the impact of the education session. The meeting was attended by 15 healthcare professionals including GPs, paediatricians, a community mental health representative, and a school nurse. There were 78% of attendees who reported that they had never received any formal teaching on oral health care prior to this session. Qualitative data highlighted specific gaps in knowledge, while confidence ratings suggest significant improvement in confidence of attendees in their knowledge of oral health in children. Achieving good oral health for all children requires the support of a wide range of healthcare professionals. Further education sessions such as this encourages joint learning and relationship building between professionals and influences behaviour to improve child health care as part of making every contact count. The emerging Primary Care Networks provide an excellent setting to deliver this education.

SUBMICROSCOPIC CHROMOSOMAL VARIATIONS IN CHILDREN WITH IDIOPATHIC INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Objective: Intellectual disability is the most common developmental disorder that originates before the age of 18 years and is characterized by limitation in intellectual functioning and adaptive behaviour. The fact that &gt;30 to 50% of all causes are still unknown in etiology is increasing the burden of the clinical evaluators and managers handling these children. The purpose of this study was to have an optimal genetic diagnostic evaluation to assist paediatricians in providing medical advice for children with intellectual disabilities and global developmental delays.&#x0D; Methods: The study was initiated with 385 cases; however, only 201 cases had no cytogenetic abnormality and negative for PCR test for FXS. However, these subjects showed characteristic signs of facial dysmorphisms, developmental delay, mild to severe intellectual disability, which were unique and unspecific with lack of major hallmarks for any particular syndrome/phenotype, considered as “idiopathic” and tested for MLPA analysis and subsequently confirmed by FISH and RT-qPCR.&#x0D; Results: A total of 23 (11.44%) cases were found to have submicroscopic chromosomal variations [microdeletions (18 cases), microduplications (5 cases)]. We categorized the aberrations detected in these cases as novel and as variants of uncertain significance. All these cases showed clear evidence for segregation of the variation and were provided with the required genetic counselling.&#x0D; Conclusion: MLPA method gives a better yield in combination with karyotype analysis. The detection rate as per current analysis suggests that the use of MLPA could be a robust, high throughput yet cost-effective technique for use in a diagnostic set up.

Evaluation of an oral health education program for young aboriginal children: feedback from parents, aboriginal health workers and managerial staff

ABSTRACTEarly Childhood Caries (ECC) is an aggressive type of dental caries that affects preschool-age children. It has a high prevalence among Australia’s Aboriginal child population but can be prevented with appropriate advice. Trained Aboriginal Health Workers provided parents with young Aboriginal children advice about preventing dental caries as part of a health education program, ‘Smiles not Tears’. The objectives of the study were to evaluate the health education program in terms of its cultural appropriateness, content, accessibility, sustainability and implementation. Parents, Aboriginal Health Workers and Managers from Aboriginal Community Controlled Health Services (ACCHS) were individually asked questions by an independent interviewer to gather feedback about the ‘Smiles not Tears’ health education program. Questions were answered as ‘yes’, ‘no’; ‘unsure’ or ‘not applicable’ and any further comments were scribed by the interviewer. The results showed that most parents (n = 96; 99.0%), Aboriginal Health Workers (n = 9; 100%) and Managers (n = 4; 100%) thought the program was culturally appropriate. All parents (n = 97; 100%) thought the advice given was easy to understand and most thought the information was easy to put into practice (n = 95; 97.9%). Aboriginal Health Workers (n = 9; 100%) and Managers (n = 4; 100%) would like to see the health education program continue in their Community Controlled Health Services. The ‘Smiles not Tears’ dental education program was well received by the majority of parents, Aboriginal Health Workers and managers. The program was culturally appropriate and easy to understand.

Parenting Advice School-Age Kids Offer to Parents to Promote Healthier Child Weight-Related Behaviors

ObjectiveTo explore parenting advice children would provide to help parents encourage positive health-related behaviors by children. DesignFocus group discussions were conducted, and children shared the advice they would provide parents to help them encourage healthy weight-related behaviors (ie, diet, physical activity, and sleep) for children. SettingFocus groups (n = 65) were conducted in 3 states (Florida, New Jersey, and West Virginia). ParticipantsSchool-age children (n = 194) between the ages of 6 and 11 years old. Phenomenon of InterestWhat parenting practices are recommended by children, and are they in line with best-practice guidelines? AnalysisFocus group data were analyzed to identify themes and trends. ResultsChildren's recommendations were congruent with authoritative parenting styles (ie, high levels of warmth and control). Most of the advice shared by children aligned with recommended parent practices (ie, responsive feeding, facilitation, environmental restructuring, parent modeling, and encouragement). However, not all of the children's advice aligned with best practices guidelines (ie, use of food rewards and deception). Conclusions And ImplicationsFuture nutrition education programs may be strengthened by helping parents adopt best practices for promoting healthy child behaviors. Furthermore, teaching children about recommended child feeding parenting practices may help protect future generations by preparing children to care for younger siblings or raise their children using best parenting practices.

Attention deficit hyperactivity disorder for children and young people: overview of guideline 87

The National Institute of Health and Care Excellence have updated the guideline on attention deficit hyperactivity disorder. The updated guideline offers advice for children under 5 years, children and young people aged 5 to 17 years and adults aged over 18 who are at risk of attention deficit hyperactivity disorder. The new guidance makes recommendations about recognising the condition, offering information and support, managing attention deficit hyperactivity disorder, medication; maintenance and monitoring and adherence to treatment and review of medication and discontinuation.

Frequency and Causes of Discharge against Medical Advice in Children

Frequency and Causes of Discharge against Medical Advice in Children

Public awareness of delayed language development in Upper Egypt

AimThe aim of this study was to investigate public awareness and the attitude of delayed language development (DLD) in children in Sohag, Upper Egypt.Patients and MethodsThe Phoniatric Unit at Sohag University Hospital receives a considerable number of belated cases of children with DLD. No Egyptian surveys were found collecting information about public awareness and knowledge of DLD and speech–language pathology services. A cross-sectional survey was done of both male and female participants who were asked to fill in a questionnaire. The questionnaire contains participant’s demographic information, eight closed-ended questions, and one open-ended question, addressing their knowledge and attitudes toward DLD.ResultsThe questionnaire was introduced to 1500 questionnaires (1380 have returned; 92% response). Good awareness of DLD in children was recognized in 74.49% of the study group. The age of 2 years was thought to be the most suitable age to seek medical advice for children with DLD in 48.84% of the study group. Some occupations such as teachers did not value early intervention of language delay. Language therapy was thought to be the best way to treat DLD in 68.7% of the study group.ConclusionThere is limited awareness of the value of early language learning and the best treatment of DLD. Awareness should be raised and changing the attitude of individuals in some occupations, especially teachers, toward DLD should be addressed.

Dietary advice for children has good effect on parents too.

Nutrition advice given to children can also improve parents' diets, an ongoing study has revealed.

Evaluation of the effect of 3-month bladder basic advice in children with monosymptomatic nocturnal enuresis

Advice (BBA) into the standards of patients' care in both monosymptomatic and non-monosymptomatic nocturnal enuresis. Although the idea of this recommendation was clear and reflects clinical experience, duration and efficacy have not been definitely established. Recent data have demonstrated the lack of efficacy of BBA and a fierce discussion has ensued. The present study was aimed to assess the efficacy of BBA in a group of previously untreated children with primary monosymptomatic nocturnal enuresis (MNE). The study was a prospective interventional multicenter trial in a cohort of previously untreated MNE patients. Forty-nine children (36 males, 13 females, mean age 7.2 years) were included in the analysis. The treatment efficacy was assessed at the 30th, 60th, and 90th days of BBA. We discovered that the mean number of wet nights decreased significantly (p<0.001) only after 3 months of BBA from 8.9 to 5.9 episodes every 2 weeks. BBA was fully successful in 2% o the children after 30 day, 12% after 60 days, and 18% after 90 days (Figure). Partial response (by ICCS) was assessed for 8%, 20%, and 34% of the patients. We noted a relatively high rate of non-responders that decreased from 90% to 47% after 90 days. We detected no differences in BBA efficacy between children with night-time polyuria or decreased maximal voided volume. A lower number of wet nights initially predicted the response to the BBA. Our study confirmed rather limited efficacy of BBA, similarly to previous observations, but provided more information on isolated MNE, because of a more specific study group and longer period of observation. The limitation of the study was lack of randomization. Our study revealed that in treatment-naïve children with monosymptomatic enuresis basic bladder training had a low (18%) and late effect, mostly pronounced after the third month of therapy. It seems that only if the patient presents with a favorable profile of bedwetting, occasionally and with a high maximum voided volume, it is worth maintaining BBA for a longer period of up to 3 months before initiating second-line therapy. In an unfavorable initial profile desmopressin or an alarm may be introduced much earlier.

Parenting, Adolescents’ Future Orientation, and Adolescents’ Efficient Financial Behaviors in Young Adulthood

The current study examined how parenting behaviors during adolescence would be related to adolescent children’s financial efficiency in early adulthood. We also examined if there was a possible mediator o f this link. Data for this investigation (N = 1385) were drawn from the high school and young adult in the Michigan Study of Adolescent Life Transitions, 22-year 9-wave investigation. It was found that parenting behaviors including parental advice for children’s future and parents’ involvement in children’s activities in middle adolescence (10th grade) predicted children’s future oriented attitudes in late adolescence (12th grade), which in turn predicted efficient financial behaviors in their early adulthood (21 years old and 24 years old). Contribution, limitations and implication of the study were discussed.

Pediatric Travel Medicine: Challenges for the Primary Care and Travel Medicine Specialist

Children are traveling internationally with increasing frequency, and some are traveling at young ages. While excellent sources of information exist about travel vaccines, malaria prevention, and general advice for children, clinicians may face situations where evidence-based recommendations are lacking. This article discusses some common challenging travel vaccine scenarios and approaches to malaria prevention and general travel advice for children.

24-Hour Helpline Access for Food Allergic Reaction Treatment Advice in Children Prescribed Epinephrine Auto-Injectors: Randomised Controlled Trial

Anaphylaxis is a life-threatening paediatric emergency. Many food allergic patients are unsure when to use their epinephrine auto-injectors. This contributes to a low quality of life and worse outcomes in the setting of an acute allergic reaction. We assessed the effectiveness of 24-hr telephone access to specialist advice in improving their quality of life.

Events Reported to a 24 Hour Helpline for Food Allergic Reaction Treatment Advice in Children Prescribed Epinephrine Auto-Injectors: Randomised Controlled Trial

Events Reported to a 24 Hour Helpline for Food Allergic Reaction Treatment Advice in Children Prescribed Epinephrine Auto-Injectors: Randomised Controlled Trial

Empowering Children for Social Transformation

A Peace, Moral and Value education program-'Mulyavardhan' is being conducted by a NGO in 500 Government run rural primary schools since 2008 to date in Maharashtra. The immediate effect has been on children's interpersonal and conflict resolution skills. Children' s learning about the personal benefits of being socio-emotionally skilled, self-controlling, respectful, and responsible for self and others, honest, empathetic towards others, has boosted their self-confidence and transformed them into empowered beings. It was reported by large number of parents that children always/often applied these learnt skills in incidents relating to domestic violence, smoking and alcohol indulgence in the family and community . Parents reported to pay attention to children's advice and act kindly towards them. Children's informed interventions in such situations have led to positive changes in the parents. This change process triggered by the 'Mulyavardhan' children is enhancing the ambience of the whole community thus setting the stage for social transformation.