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Forbes, Tom; Goeman, Emma; Stark, Zornitza; Hynson, Jenny; Forrester, Mike
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01351.xpmid: 18638330
Aim: To better understand current attitudes and practices relating to discussions concerning the withholding and withdrawing of life‐sustaining medical treatment (WWLSMT) among medical staff in the paediatric setting. Methods: An anonymous online survey of paediatricians (senior medical staff – SMS) and paediatric trainees (junior medical staff – JMS) likely to be involved in the care of children with life limiting illness. Results: A total of 162 responses were obtained (response rate 42%). SMS indicated feeling more comfortable with their abilities to discuss WWLSMT than JMS. Barriers to discussing WWLSMT were numerous and included clinician concerns about family readiness for the discussion, prognostic uncertainty, family disagreement with the treating team regarding the child's prognosis/diagnosis and concerns about how to manage family requests for treatments that are not perceived to be in the child's best interests. Fifty‐eight per cent of JMS and 35.8% of SMS reported receiving no specific communication training regarding WWLSMT. Most learned through experience and by observing more senior colleagues. There was a high level of support for additional training in this area and for the provision of resources such as discussion guidelines and a structured form for documenting the outcomes WWLSMT discussions. Conclusion: The majority of JMS feel less comfortable with their abilities to facilitate these discussions than their senior colleagues. The results of this study suggest that although confidence correlates with experience, junior and senior clinicians are eager to improve their skills through ongoing professional development and the provision of resources. The education needs of JMS and SMS appear to be different.
Stark, Zornitza; Hynson, Jenny; Forrester, Mike
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01352.xpmid: 18638331
Aim: To understand the circumstances of inpatient deaths at a tertiary paediatric hospital and current practices regarding the timing and documentation of discussions concerning the withholding and withdrawing of life‐sustaining medical treatment (WWLSMT). Methods: Retrospective review of the medical records of 50 consecutive inpatient deaths. Results: In total, 84% of inpatient deaths occurred in an intensive care setting. In all, 74% of patients had an underlying life‐limiting or life‐threatening condition and death was documented as having been expected in the short term in 88% of patients. Life‐sustaining treatment was either withdrawn or limited prior to death in 84% of cases. There was documented family involvement in the decision‐making process in 98% of cases. A total of 83% of discussions first took place on the day of death itself or in the week leading up to the child's death. Although medical staff frequently documented the outcome of these discussions, the content, clarity and accessibility of documentation varied widely. Conclusions: The majority of inpatient deaths at The Royal Children's Hospital occur in acute circumstances and involve patients with chronic conditions. In most cases, death follows WWLSMT. Discussions with families are documented as first occurring relatively late in the course of the final admission although opportunities for earlier discussions may exist. Further research is needed to understand more about how and when discussions actually take place, what the barriers to communication are and to what extent opportunities exist for discussions to be initiated earlier in the illness course.
Moore, Peter; Kerridge, Ian; Gillis, Jonathan; Jacobe, Stephen; Isaacs, David
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01353.xpmid: 18638332
Objectives: To examine withdrawal and limitation of life‐sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. Design: Retrospective chart review and literature review. Source of Data: Review of 12 months of patient records from a tertiary Australian children's teaching hospital. Medline search using relevant key words focusing on death and PICU. Results: Twenty of 27 deaths (74%) followed either WLST (n = 16) or Do Not Resuscitate (DNR) orders (n = 4); five children failed cardiopulmonary resuscitation (CPR); and two children were brain‐dead. Meetings between the medical team and family were documented for 15 of 16 children (93.8%) before treatment was withdrawn. The average time between withdrawal of life support and death was 13 min. A review of the English‐language literature revealed that 18–65% occurring in PICUs worldwide follow WLST and/or institution of DNR orders. Rates were higher (30–65%) in North America and Europe than elsewhere. Most PICU deaths occurred within 3 days of admission. North American and British parents appear to be involved in decisions regarding withdrawal and limitation of treatment more often than parents in other countries. Conclusions: Withdrawal and limitation of life‐sustaining treatment was more common in an Australian children's hospital ICU than has been reported from other countries. Details of discussion with parents, including the basis for any decision to WLST, were almost always documented in the patient's medical record.
Redman, Toni A; Finn, Judith C; Bremner, Alexandra P; Valentine, Jane
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01319.xpmid: 18557810
Aim: Currently, the use of upper limb botulinum toxin‐A (UL BTX‐A) is based on evidence of functional efficacy without supporting evidence of positive change in health‐related quality of life (HRQOL). While function may improve, this cannot be directly correlated with an improvement in HRQOL. Most paediatric studies use caregiver/parent proxy reports. The inclusion of child self‐reports is increasing as poor correlation with proxy reports is being demonstrated. This paper aims to study the effect of UL BTX‐A therapy on HRQOL in children with hemiplegic cerebral palsy (CP). Method: Design: Pilot prospective randomised trial. Participants: 22 children with hemiplegic CP aged 7 years 0 month−13 years 11 months (12 treatment, 10 control). Treatment: One series BTX‐A injections into UL. HRQOL assessed at baseline, and 1, 3 and 6 months post‐injection by completion of Pediatric Quality of Life (PedsQL) 4.0 Generic Core Scales and PedsQL 3.0 CP Module. Outcome: 1. Change in PedsQL scores. 2. Concordance between child self‐report and parent proxy‐report scores. Results: No statistically significant difference between treatment and control groups was observed for any domain of HRQOL. Intraclass concordance was good for the PedsQL CP Module Daily Activities, and Speech and Communication scores (P = 0.0005). Conclusion: This pilot work adds to the emerging evidence that UL BTX‐A therapy has no statistically significant effect on the HRQOL of children with hemiplegic CP. With the increasing use of this therapy in children with CP, further research across the broader CP population is needed to identify whether this therapy is indicated in other target populations. Both child and parent proxy reports should be collected when assessing HRQOL in this population.
Zou, Chao Chun; Liang, Li; Dong, Guan Ping; Zhao, Zheng Yan
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01320.xpmid: 18564081
Aim: To evaluate the clinical and aetiopathogenesis of peripheral precocious puberty (PPP) in Chinese children. Methods: A total of 91 PPP children were reviewed. Clinical features including age, gender, stage of pubertal development, presenting symptoms, features and aetiopathogenesis were investigated. Results: They were 65 girls (71.4%) and 26 boys (28.6%) with a median age of 3.6 years. The median age of girls and boys were 3.7 and 3.4 years, respectively, with a significant difference (P = 0.048). Congenital adrenal cortical hyperplasia (CAH) patients with a median age of 0.2 years were younger than other patients. The major complaint was the appearance of breast buds (56.6%), followed by menstruation (5.5%), vaginal discharge (5.5%) and vomiting (4.4%). Heterosexual PPP was common in CAH girls (10 cases) while exogenic sexual steroid exposure was common in boys (10 cases). Major cause of PPP was gonadal abnormalities (34.1%), including 24 girls with autonomous isolated ovarian cysts, one with Sertoli's cell ovarian tumour, five with testicular tumours and one with testotoxicosis. CAH was the most common cause of PPP in boys. Exogenous sexual steroid exposure was the third cause. MeCune–Albright syndrome was also found in three cases. It was noted that the causes of 24 cases (26.4%), including 20 girls and 4 boys, were still unknown. Conclusion: The results imply that PPP is a common matter of children in the department of endocrinology. It is more frequently in girls. History, physical examination, clinical suspicion and imaging detection should be considered carefully to diagnose and investigate the aetiopathogenesis.
Khoo, Kaylyn; Bolt, Penny; Babl, Franz E; Jury, Susan; Goldman, Ran D
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01322.xpmid: 18564080
Aim: Studies have shown increasing Internet use for health information. We aimed to broadly examine parents' utilisation of information sources for their children's health, their trust in them and to define the role of the Internet for children's health information Methods: Interview of a convenience sample of parents of patients presenting to a tertiary paediatric emergency department (ED) (Royal Children's Hospital, Melbourne, Australia) in 2006/2007. Results: A total of 360 parents completed the interview. Parents had used on average five sources of health information for their children in the previous 6 months. In the previous 6 months and immediately prior to the ED visit, general practitioners were consulted for health information by 87% and 39%, chemists by 44% and 2%, the Internet by 43% and 6% and telephone advice health lines by 30% and 10%, respectively. Of these sources, parents ‘greatly trusted’ Royal Children's Hospital ED doctors and nurses 82% (n = 112) their regular general practitioners in 73% (n = 303), chemists in 45% (n = 160), telephone advice health lines (Nurse‐On‐Call) in 42% (n = 90) and the Internet in general in 10% (n = 112). Overall, 52% had sought health information for their children on the Internet. Only 20% knew and 11% had ever used the regional children's hospital web site (http://www.rch.org.au/kidsinfo), but 97% of the Internet users reported they would trust this information. Conclusion: While using numerous different sources, parents in this study mostly use and trust traditional sources of health information. Scores of respondents use the Internet to seek health information for their children and would value easier access to Internet sources that they trust.
Pritchard, Margo A; Colditz, Paul B; Tudehope, David I; Gray, Peter H; Cartwright, David; Wigg, Neil R; Beller, Elaine M
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01323.xpmid: 18564079
Aim: To assess the efficacy of a preterm‐targeted screening programme against the routine Australian National Health Medical Research Council (NHMRC) universal child health screening programme to detect disability in a general practice setting in children born ≤31 weeks gestation at 12‐months of age. Methods: Multi‐centred trial involving 202 preterm children randomised to receive the preterm‐targeted or NHMRC programme. Primary outcome, correct identification of neurosensory disability by general practitioners assessed against gold standard paediatric assessments. Sensitivity analysis estimated interrater agreement and screening accuracy. Secondary outcomes, post natal depression (PND), parental stress, health service use, screening programme helpfulness and correct identification of levels of disability severity. Results: Of the 195 infants with data on the primary outcome in the preterm‐targeted group, their general practitioners correctly identified the disability status of 61/93 (65.6%) children, as compared with 69/102 (67.6%) in the NHMRC group (odds ratios (OR) 0.91 95% confidence interval (CI) 0.50, 1.65). Responses where general practitioners were unsure of a child's disability status were coded as incorrect and not paired for sensitivity analysis. Sensitivity analysis for 180 diagnostic pairs showed fair interrater agreement for both groups (preterm‐targeted k = 0.30 vs. NHMRC k = 0.29) with screening test results favouring the preterm‐targeted group with greater sensitivity (73% vs. 33%) but lower specificity (70% vs. 92%) resulting in more over referrals (30% vs. 8%); however, these had a significantly lower mean Developmental Quotient (DQ) score compared with non‐disabled children. PND scores were higher in preterm‐targeted group (OR 1.33 95% CI 0.01, 2.66). Conclusion: The preterm‐targeted programme used by general practitioners: (i) did not improve overall identification of disability status compared to the NHMRC universal programme (Australian New Zealand Clinical Trails Registry number, ACTRN 12606000472572); however (ii) it did demonstrate greater efficacy as a screening tool in accurately identifying disabled children.
Koves, Ildiko H; Boucher, Andrew; Ismail, Dunia; Donath, Susan; Cameron, Fergus J
2008 Journal of Paediatrics and Child Health
doi: 10.1111/j.1440-1754.2008.01317.xpmid: 18564082
Aim: Patient satisfaction is regarded as an integral component of the quality of medical care. Therefore, as part of an ongoing process of outcome assessment, we analysed levels of satisfaction of care among patients and parents in our diabetes clinic and its relationship to short‐term metabolic control outcome, diabetes knowledge and health‐related quality of life (HRQOL). Methods: In 2004, parents and their children aged 5–18 years attending the Royal Children's Hospital (RCH) diabetes clinic completed questionnaires reporting their satisfaction with care provided, HRQOL and diabetes knowledge. Concurrent HbA1c levels were also recorded. The reporting profile was 83 patients, 24 fathers and 110 mothers. Results: Generally, both patients and parents were satisfied with diabetes care provided at our tertiary centre. Satisfaction of care was not associated with the clinical outcome of metabolic control (measured by HbA1c levels), diabetes knowledge or HRQOL measures. Conclusion: Most patients and their parents in the RCH diabetes clinic appear generally satisfied with their diabetes care. The degree of satisfaction of care cannot be presumed according to clinical outcome, diabetes knowledge or HRQOL measures.
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