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PubMed1999

Measuring quality of life in paediatric patients.

The purpose of this paper is to highlight important considerations in the measurement of health-related quality of life (HR-QOL) in paediatric populations. Considerations specific to the evaluation of HR-QOL in children include children's understanding of the questions being asked, their understanding of their own disease, using parents as proxies, time perception problems and simply the fact that children are continually changing. We provide a review of the currently available literature regarding paediatric HR-QOL assessments to examine the different instruments and approaches taken to assess HR-QOL in paediatrics. Asthma-specific measures are discussed as examples of condition-specific HR-QOL instruments because of the considerable amount of methodological and developmental work that has been conducted in this disease. Our search strategy revealed 15 main generic and 5 main asthma-specific instruments that met our criteria for inclusion. The main points high-lighted for each instrument are the description of domains, respondent (i.e. the child, parent or clinician), age group, number of items, format of instrument (usually self-administered or by interview), original country and language, and the existence of translations. For the various studies in which the different instruments are used, the issues of patient population tested, sample size, reliability and validity are addressed. Although this paper does not attempt to be an exhaustive study of paediatric HR-QOL instruments, we provide an overview of the main generic and asthma-specific instruments, as well as an examination of the different methods used in assessing paediatric HR-QOL. Many challenges exist in the measurement of HR-QOL in paediatric patients. With increased attention to the considerations high-lighted, the field will continue to grow, and the usefulness and application of HR-QOL measures in paediatric patients is likely to improve.

Child↗

PubMed2004

Trends in paediatric health economic evaluation: 1980 to 1999.

BACKGROUND: Although standard methods for conducting economic evaluations have evolved, little attention has been paid to their application in paediatrics. The Paediatric Economic Database Evaluation (PEDE) Project was conceived to promote research into paediatric health economic methods. AIM: To examine trends in paediatric economic evaluation between 1980 and 1999. METHODS: A comprehensive literature database created for the PEDE project was the source of the data. Descriptive statistics were used to summarise trends. Publication volume, study outcome category, analytical technique, and journal type were examined over the study period. RESULTS: The literature search resulted in 787 full paediatric economic evaluations. The volume of publications increased from 61 to 440 citations per 5 year period. The most common health outcome category was cases of disease/condition/abnormality. Cost-effectiveness analysis (CEA) was the most common technique used, accounting for a majority of evaluations in all time periods. The proportion of studies using CEA increased by 23 percentage points, while the proportion using cost-benefit analysis decreased from 31% in 1980-84 to 12% in 1995-99. Cost-utility analysis was the least common analytical technique. Publication in journals of paediatrics/perinatal medicine was the most common venue for all intervals and increased as a proportion of the total over time. CONCLUSIONS: The growth in publication of paediatric economic evaluations suggests that increasing attention should be paid to the application of health economic methods to a paediatric population to ensure high quality allocation decisions.

Child↗

PubMedDate not supplied

Implementing family-centred care: an exploration of the beliefs and practices of paediatric nurses.

OBJECTIVE: This study explored paediatric nurses' perceptions of how they include and involve parents in the care of hospitalised children. DESIGN: This qualitative study used individual unstructured interviews to gather data, the data was analysed using thematic coding. SETTING: Paediatric wards within two regional area health services of New South Wales, Australia. SUBJECTS: Fourteen paediatric nurses were asked to describe their beliefs and practices regarding the clinical application of family-centred care. MAIN OUTCOME MEASURE: Paediatric nurses' beliefs and practices about family-centred care were explored in an effort to explain how the concept was implemented. RESULTS: The findings are presented as four interconnected themes. The first describes how participants either allocated tasks to parents or retained them, the second relates to the nurses' professional identity, the third theme identifies barriers and constraints to the implementation of family-centred care, while the fourth describes the nurses' beliefs about their responsibilities when delivering family-centred care. CONCLUSIONS: Together these findings suggest that while nurses endorse the concept of family-centred care, the implementation into practice is more problematic. While it is not possible to generalise these findings to other paediatric nurses, the authors believe the insight gained will resonate with paediatric nurses internationally. The findings from this study are being used as the basis for the development of clinical practice guidelines to assist paediatric nurses to more consistently apply the concepts of family-centred care to their practice.

Adult↗

PubMed1999

Paediatric admissions to the general intensive care unit at palmerston north hospital.

OBJECTIVES: To report Palmerston North Hospital's (PNH) recent experiences with paediatric admissions to the general Intensive Care Unit (ICU), and to identify any aspects relevant to regionalisation of paediatric intensive care. METHODS: Retrospective review of the ICU database and admission register to enable clinical and demographic profiling of all paediatric (aged < 15 years) admissions to PNH ICU from 1996 to 1998. Observed and predicted mortalities were compared using the Paediatric Index of Mortality (PIM). RESULTS: Seventy-five paediatric patients had 76 admissions, comprising 7.4% of ICU admissions during the study period. Forty-eight (64%) were male, and 59 (79%) of the patients received mechanical ventilatory support. The median ICU stay was 21.5 hours (range 0.1 to 568 hours). There were 3 deaths in the ICU, and one following ICU discharge but prior to hospital discharge, compared with 6.37 predicted deaths. The median PIM score overall was 5.3% predicted probability of death (range 0.8 - 61.4%), with 6 patients (7.9%) having a PIM score of greater than 30%. Fifteen patients (20%) were transferred to tertiary services. CONCLUSIONS: If the PNH experience reflects that of other similar institutions, then non-tertiary ICUs admit small numbers of critically ill paediatric patients who tend to be of low to moderate severity, but who cover the full spectrum of severity. Most cases can be well managed locally, but appropriate referral and transfer is an important component in the delivery of a rational and integrated paediatric intensive care service.

Journal Article↗

PubMed2005

Can Canada sustain paediatric phase I trials? A national survey of cancer relapse in children.

BACKGROUND: Paediatric phase I trials are critical to the evaluation of new agents using standardized methodology. However a large proportion of paediatric patients in Canada do not have access to phase I therapy. OBJECTIVES: A National Paediatric Cancer Relapse Survey was conducted to collect preliminary data to evaluate the feasibility of multi-centre paediatric phase I trials within Canada. METHODS: A survey consisting of 20 individual questions was sent out to all of the 17 paediatric oncology centres in Canada. RESULTS: Fifteen centres (88%) responded to the survey. 1027 children are diagnosed with cancer each year in Canada while 241 present with recurrent cancer. Of the 85 patients who are considered to be eligible for phase I study each year, only 53% were referred for phase I therapy. Two centres have more than 10 eligible patients a year, while the remaining 13 centres have less than 10 eligible patients each year. CONCLUSIONS: We estimate that 20% of the eligible patients could be accrued to phase I trials and Canada may provide sufficient patient number, i.e. 25 to 30 solid tumour patients every 2 years, to allow one multi-centre paediatric phase I trial to be completed over a 2-year period.

Adolescent↗

PubMed2004

Use of donor aorta for arterial reconstruction in paediatric liver and multivisceral transplantation.

BACKGROUND: Arterial reconstruction remains the most important technical issue in paediatric transplantation. The arteries of paediatric donors as well as recipients are small and friable. The aim of this study was to assess the use of the donor aorta as a conduit for arterial reconstruction in paediatric liver and multivisceral transplantation. METHODS: Between June 1994 and January 2002, 284 paediatric transplants, including 197 cadaveric liver and multivisceral transplants, were performed in children at this centre. Of these, 41 (20.8 per cent), including nine cadaveric liver transplants and 32 multivisceral transplants, were revascularized by donor aortic reconstruction. Patient demographics, types of donor arterial reconstruction, technical complications and incidence of hepatic artery thrombosis were reviewed. RESULTS: None of the 41 donor aortic reconstructions used in revascularization of paediatric liver and multivisceral transplants thrombosed. There were no bleeding complications and no pseudoaneurysms developed. CONCLUSION: Arterial reconstruction using donor aorta is a useful option with a low incidence of thrombosis in paediatric transplantation.

Aorta↗

PubMed2007

Adolescents with acute lymphoblastic leukaemia: outcome on UK national paediatric (ALL97) and adult (UKALLXII/E2993) trials.

BACKGROUND: Adolescents with acute lymphoblastic leukaemia (ALL) have languished in the shadow of success of the outcome of therapy in childhood ALL. Their treatment has always been incorporated into either paediatric or adult clinical trials depending on the mode of referral and hence there is a need to address an age and risk specific strategy for improving the outcome of this neglected group of patients. This article has summarised the recent and updated retrospective comparative analysis of adolescents treated on the Medical Research Council (MRC) trials. This analysis adds further emphasis to the treatment approach and the merits and limitations of treatment of adolescents on paediatric and adult trials. METHODS: A retrospective comparative analysis of adolescents aged 15-17 years, treated on either MRC ALL97/revised 99 (n = 61), a randomised paediatric trial or UKALLXII/E2993 (n = 67), an adult trial, between 1997 and 2002 was undertaken. RESULT: Results suggest a trend towards a superior outcome on paediatric trials. The 5-year EFS on ALL97 was 65% (95% CI = 52-78%) and on UKALLXII/E2993 was 49% (95% CI = 37-61%; P = 0.01). Multivariate analysis allowing for age and Ph status, diminished the EFS difference, but confirmed a reduced rate of death in remission in patients managed on the paediatric protocol. CONCLUSIONS: Despite limitations in the methodology, comparative studies including our MRC study suggest a consistent advantage for adolescents managed intensively on paediatric trials. Redefining age limits with risk-based strategy and multi-centre collaboration should be considered to improve the survival of young adults.

Adolescent↗

PubMed1990

Appropriate training in paediatric nephrology for developing countries: hypothesis and proposals.

Appropriate training in paediatric nephrology is a comprehensive approach designed to develop skills and capabilities to deal with the following basic components of medical care: (1) medical competence for clinical and research activities; (2) interpersonal relationships directed at maintaining patients' freedom and autonomy; and (3) adequate incorporation of technological, financial and managerial aspects of paediatric nephrology services. Inappropriate training causes frequent, dramatic and paradoxical negative feedback in developing countries: shortage of functioning medical equipment, skilled manpower and trained paediatric nephrologists co-exist with unused high-cost medical equipment and loss of skilled health care professionals. Appropriate training, tailored to the needs and resources of developing countries, could be an efficient way to develop high-quality paediatric nephrology care. Efficient training must develop self-reliant, self-sufficient and skilled health care professionals in the local economic, educational, technological and political context. Regional and international co-operation is essential to promote adequate training in paediatric nephrology. Developing countries lack an effective and accurate information communication network for selecting modern technology for paediatric nephrology. The development of this network through international co-operation, is an urgent requirement.

Developing Countries↗

PubMed1993

Contribution to scientific research in paediatrics in The Netherlands: evaluation according to subspeciality over a 10-year period.

The board of the Dutch Paediatric Association requested a survey of the scientific research performed in all academic and non-academic paediatric hospitals, authorized to train medical doctors in paediatrics in the Netherlands. Contributions to the international and the Dutch scientific literature, in the form of regular publications, chapters in books, contributions to proceedings and Ph.D. theses were counted over two 5-year periods, i.e. 1981-1985 and 1986-1990. The quality of publications in the international journals was assessed using the average impact factor of the journals over the 10-year period. The number of publications in the international literature doubled during the observation period 1986-1990 compared to the period 1981-1985. Nevertheless, the quality of the publications remained the same. Metabolism, oncology/haematology, immunology/infectious diseases and cardiology are the subspecializations in which scientific research takes place in four or more academic paediatric hospitals. In total, 84 Ph.D. theses were produced in which a paediatrician was either the project leader (mostly a professor in paediatrics) or the investigator-in-charge. Insight into structure and major research efforts of paediatric hospitals in other countries of Europe may lead to exchange of views and, maybe, profitable co-operation.

Netherlands↗

PubMed1998

Postdural puncture headache in paediatric oncology patients.

PURPOSE: Previous studies have not determined the correlation between dural puncture and postural headache in paediatric patients. Furthermore, no studies have evaluated the correlation between atypical headache and dural puncture in the paediatric population. Therefore, we prospectively analyzed the incidence of typical postdural puncture headache (PDPHA) and atypical headache in paediatric oncology patients following dural puncture. METHODS: The study population consisted of 66 paediatric patients undergoing 128 consecutive procedures, including 99 lumbar punctures and 29 bone marrow aspirations without concomitant lumbar puncture. Patients were prospectively randomized into four groups: Group I, preteens (< 13 yr) undergoing lumbar puncture, Group II, adolescents (13-21 yr) undergoing lumbar puncture, Group III, preteens undergoing bone marrow aspiration, and Group IV, adolescents undergoing bone marrow aspiration. The presence and description of headache was documented immediately after dural puncture or bone marrow aspiration, and on post-procedure days # 1, 3 and 5 by personnel blinded to the type of procedure. RESULTS: There was an increase in the incidence of headache (9.1%) after lumbar puncture in patients < 21 yr relative to patients undergoing bone marrow aspiration (P < 0.05). No difference was found between the incidence of typical PDPHA after dural puncture in preteens and adolescents. There was also no difference in the incidence of atypical headache after dural puncture or after bone marrow aspiration among preteens and adolescents. CONCLUSIONS: Paediatric patients experience an increased incidence of typical postdural puncture headache after dural puncture compared with age-matched patients undergoing bone marrow aspiration only. Atypical headache is relatively common in the paediatric population after dural puncture or bone marrow aspiration.

Adolescent↗

PubMedDate not supplied

Non-orthopaedic paediatric trauma in a regional hospital.

BACKGROUND: In the Republic of Ireland there are no paediatric surgeons outside Dublin. Most paediatric trauma is managed in general hospitals by general or orthopaedic surgeons. AIM: In this study we audited our experience with paediatric trauma in a regional setting. METHODS: We carried out a retrospective review of all non-orthopaedic paediatric trauma patients admitted to our institution over a two-year period.The method of injury, management and outcome were recorded and the TRISS (revised trauma injury severity score) method was used to calculate the probability of survival. RESULTS: One hundred and fifty four paediatric patients were admitted following trauma. Falls, RTAs and burns were the commonest reasons for admission. Twenty nine of these patients (19%) required surgical procedures. There were no unexpected deaths. CONCLUSION: The majority of paediatric trauma admissions were for minor injuries. A number of seriously injured children were successfully treated with no unexpected deaths.

Adolescent↗

PubMed2000

Significant regional heterogeneity of coronary flow reserve in paediatric hypertrophic cardiomyopathy.

Previous studies have indicated that cardiac events in young patients with hypertrophic cardiomyopathy (HCM) are related to ischaemia rather than to arrhythmia. We measured coronary flow reserve in paediatric HCM and compared the values with those in adult HCM. We studied 12 patients with HCM including six paediatric (<20 years old; mean 13 years) and six adult patients (>20 years old: mean 62 years), and six healthy young adults (mean 29 years) as controls. Every patient underwent magnetic resonance imaging (MRI) for anatomical assessment. Myocardial blood flow at rest and after dipyridamole infusion was measured with dynamic nitrogen-13 ammonia positron emission tomography (PET). Partial volume effect was corrected for using the anatomical data obtained with MRI. In adult patients with HCM, coronary flow reserve in the hypertrophied septal region was not significantly different from that in the non-hypertrophied lateral wall (1.38+/-0.29 vs 1.77+/-0.39, respectively). In the paediatric patients, coronary flow reserve in the hypertrophied septal region was significantly lower than in the non-hypertrophied lateral wall (0.84+/-0.33 vs 2.74+/-0.90, respectively, P<0.01). In addition, coronary flow reserve in adult patients was lower than in control subjects both in the septal wall (1.38+/-0.29 vs 2.94+/-0.35, respectively, P<0.0001) and in the lateral wall (1.77+/-0.39 vs 2.85+/-0.69, respectively, P<0.05). In contrast, coronary flow reserve in paediatric patients was not significantly different from that in control subjects in the lateral wall (2.74+/-0.90 vs 2.85+/-0.69, respectively), while absolute reduction of myocardial blood flow was noted after pharmacological vasodilatation in the hypertrophied septal region. In conclusion, significant regional differences of coronary flow reserve were present in the paediatric patients with HCM. These results suggest that paediatric patients with HCM intrinsically have the potential to experience significant regional ischaemia even in the absence of coronary stenosis.

Adolescent↗

PubMed1998

The Internet and the paediatric surgeon.

The Internet, which has truly united the world, is an extensive network of inter-linked computers storing immense bytes of information that can be accessed by anyone, transcending all barriers. The paediatric surgery Internet consists of exponentially growing material that deals with information specifically for paediatric surgeons and patients of the paediatric age group. We reviewed the methods available to take advantage of this network to enable busy paediatric surgeons to accrue the benefits easily and efficiently rather than be lost in the information ocean by surfing individually. By getting connected to the Internet, the paediatric surgeon gains enormous information that can be useful for patient care. The Internet has revolutionised scientific publications by virtue of its fast and accurate transmission of manuscripts. Paediatric surgeons can send manuscripts by this channel and also access journals, obviating the inherent lag period of communication by post.

Communication↗

PubMed2005

After-hours paediatric telephone triage and advice: the Neuchâtel experience.

UNLABELLED: Delivery of paediatric primary care by call centres has emerged as a satisfactory system. It has been reported in the literature in the United States and Australia. European public-funded paediatric emergency departments (ED) have little epidemiological data to rely on to match the demand in care. Since 1996, we have run a free nurse-led after-hours paediatric telephone triage and advice (TTA) system. To determine whether other Swiss public paediatric departments practiced formal TTA, we conducted a nation-wide postal survey. To delineate who used our call centre and for what reasons, we embarked on a retrospective study of all the 1997/2000 calls. Most of the units run a TTA (27/35) but few specifically train their staff (14/27). A 43% increase in call numbers was seen between 1997 (3242) and 2000 (4628). During week-days, most of the calls were between 6 and 11 pm and at weekends, a mid morning activity peak was seen. Some 75% of calls were for children aged 5 years or less. Fever, earache and cough accounted for 42% of the main complaints. Of all calls, 27% were dealt by nurses' advice only. About 15% of the calls were transferred to the on-call resident. About 50% led to a same day ED appointment. CONCLUSION: Nurse-led paediatric telephone triage and advice is common in Switzerland where training seems to be irregular. Our data can help units to better plan an eventual paediatric telephone triage and advice service.

After-Hours Care↗

PubMed2000

Effects of continuing paediatric education in interpersonal communication skills.

UNLABELLED: Paediatric care places great demands on interpersonal communication skills, especially as regards the handling of psychosocial issues. Recent shifts in paediatric morbidity and increases in patient empowerment furthermore emphasize the need for continuing paediatric education in communication skills. It is, however, debatable, whether after residency paediatric education can influence paediatrician performance. This study evaluated the effects of a 5-day experiential communication training by means of a pretest/post-test control group design. A total of 21 consulting paediatricians (10 experimental, 11 control group paediatricians) videotaped two series of consecutive outpatient encounters. Compared with the untrained control group, trained paediatricians asked more psychosocial questions and looked at the patients and their parents more often. In addition, they gave patients and parents more room to talk. No difference was found in the length of the outpatient visits. CONCLUSION: Paediatric education after residency influences paediatricians' verbal and nonverbal communication skills positively, especially as regards handling psychosocial issues. On the basis of these findings, it appears worthwhile to encourage continuing paediatric education in interpersonal communication skills.

Adult↗

PubMed2026

Shared genetic architecture and therapeutic targets across paediatric immune-mediated diseases.

OBJECTIVES: Paediatric-onset immune-mediated inflammatory diseases (IMIDs), including juvenile idiopathic arthritis and related rheumatic diseases, remain genetically undercharacterised. We aimed to define shared and category-specific genetic architecture across paediatric IMIDs, compare signals with adult IMIDs, and identify therapeutic opportunities. METHODS: We analysed 24 paediatric IMIDs classified as autoimmune, polygenic-autoinflammatory, mixed-pattern, or allergic. Genome-wide association analyses included 18,086 cases and 131,019 controls of European ancestry. We estimated single nucleotide polymorphism (SNP)-based heritability, genetic correlations, and polygenic overlap; performed subset-based meta-analysis; and conducted functional annotation, gene prioritisation, pathway and protein network analyses, adult-IMID comparison, and drug-target prioritisation. RESULTS: SNP-based heritability ranged from 28.9% for allergic IMIDs to 61.9% for autoimmune IMIDs. Genetic correlation and polygenic modelling supported partial sharing across categories with category-specific components. Meta-analysis identified 39 genome-wide significant loci outside the Major Histocompatibility Complex (MHC) region, including 15 previously unreported loci; 19 loci were shared between categories. Gene-prioritisation and protein interaction analyses identified a core MHC-centred antigen-presentation network, with category-enriched modules involving complement, innate/barrier pathways, epithelial biology, and type 2 immunity. Enriched pathways included nuclear factor κB signalling, T helper 17 related pathways, Janus kinase-signal transducer and activator of transcription signalling, programmed cell death protein 1/programmed death‑ligand 1, cytotoxic T‑lymphocyte associated protein 4 regulation, and osteoclast differentiation, several of which are relevant to rheumatic diseases. Paediatric IMIDs shared broad polygenic architecture with adult IMIDs, whereas top-ranked genes converged strongly with adult rheumatic diseases. Priority Index analysis identified 178 high-scoring genes, including 43 approved or investigational IMID drug targets. CONCLUSIONS: Paediatric-onset IMIDs share core pathways with adult forms but exhibit distinct genetic architecture shaped by age-specific immune and neurodevelopmental biology. These findings provide a genomic framework for paediatric precision medicine, guiding classification, risk prediction, and therapeutic development.

Humans↗

PubMed2005

Is the variable-stiffness paediatric colonoscope more effective than a standard adult colonoscope for outpatient adult colonoscopy? A randomised controlled trial.

BACKGROUND: Trials with variable-stiffness colonoscopes have yielded conflicting results regarding efficacy and patient tolerance. AIM: We compared a variable-stiffness paediatric colonoscope with a standard adult colonoscope. METHODS: Two hundred and forty consecutive adult outpatients presenting for colonoscopy were randomised to either a variable-stiffness paediatric colonoscope or an adult colonoscope. If there was difficulty in performing colonoscopy with the assigned scope, the endoscopist was given the option of switching to the alternative instrument. In the condition of a severely fixed, angulated sigmoid colon, a final 'salvage' (backup) option was that of switching to an even thinner diameter paediatric colonoscope. RESULTS: The initial frequency of total colonoscopy was similar with the variable-stiffness paediatric colonoscope and adult colonoscope (95.8% versus 96.6%, p=1.0). Factoring in scope changes, the final frequency was 98.3% versus 99.2% (p=1.0). There was no statistical difference between the two groups in terms of insertion time, doses of sedative medications, scales of procedure difficulty, or patient satisfaction. CONCLUSIONS: Adult colonoscope and variable-stiffness paediatric colonoscope are both effective instruments for routine colonoscopy. In cases when the use of the initial scope is unsuccessful, switching to the alternative scope may permit passage to the caecum. There are occasional patients with fixed, angulated sigmoid colons in whom use of an even thinner diameter paediatric colonoscope can be helpful.

Adult↗

PubMed2006

Paediatric surgery: trends in UK surgical trainees' operative experience.

AIM: This study assesses the effects of the reconfiguration of postgraduate surgical training and changes to work patterns through legislation within UK on the operative experience of trainees completing specialty training in paediatric surgery. METHODS: Data were collected from the consolidation record of operative experience submitted by every candidate sitting the Intercollegiate Specialty Board Examination in Paediatric Surgery in UK from 1996 through 2004. A number of index procedures were chosen as surrogates of the overall operative experience and underwent detailed analysis. These comprised operations performed in the following categories: Neonatal Surgery, General Paediatric Surgery, Paediatric Urology, Paediatric Oncology, and Emergency Paediatric Surgery. RESULTS: Sixty-three sets of data comprising 12,866 operations were ultimately identified as being suitable for analysis. The average number of operations performed annually by trainees increased over the study period as did the number in each of the operative categories. The number of operations performed with senior assistance or supervision increased over this period by an average of 12.5%. This trend was also evident in emergency surgery where the average number of sample procedures performed by trainees increased by 28% over the study period. CONCLUSION: In 1995, reforms to the training grade within UK reduced the time spent in specialist training from a previously unregulated period to 72 months of higher surgical training. Subsequent directives in response to health and safety legislation have further abbreviated the length of time spent at the workplace, initially to 72 hours and more recently to 58 hours per week. This combination has been generally perceived throughout the surgical community as prejudicial to acquisition of clinical and operative competence. This study, however, fails to endorse this perception and suggests to the contrary that perhaps through increased delegation, the volume of training operations is being preserved and that operative training is now better supervised than ever before.

Clinical Competence↗