Paediatrics (RCH) - Research Publications

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    Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia.
    Vemuri, S ; Hynson, J ; Williams, K ; Gillam, L (BMJ, 2022-05-16)
    OBJECTIVES: Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself. DESIGN: Individual, semistructured, vignette-based qualitative interviews. SETTING: Acute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia. PARTICIPANTS: 25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study's design. RESULTS: Four key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child's risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance. CONCLUSION: There is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.
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    Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study.
    Vemuri, S ; Hynson, J ; Williams, K ; Gillam, L (Springer Science and Business Media LLC, 2022-05-16)
    BACKGROUND: For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself. METHODS: This qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician. RESULTS: Two key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians' roles and responsibilities in decision-making, and (2) the specific influences on paediatricians' choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation. CONCLUSIONS: Despite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians' considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making. TRIAL REGISTRATION: Not applicable.
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    Hypoplastic left heart syndrome-pushing the limits.
    Ozturk, M ; d'Udekem, Y ; Yerebakan, C (Elsevier BV, 2022-06)
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    Victorian Specialist Immunisation Services (VicSIS) - bolstering adult clinics for COVID-19 vaccines
    Gordon, SF ; Virah Sawmy, E ; Duckworth, E ; Wolthuizen, M ; Clothier, HJ ; Chea, M ; Tenneti, N ; Blow, N ; Buttery, JP ; de Luca, J ; Korman, TM ; Barnes, S ; Slade, C ; Maggs, C ; Giles, ML ; Teh, BW ; Aboltins, C ; Langan, KM ; Van Diemen, A ; Crawford, NW (TAYLOR & FRANCIS INC, 2022-04-24)
    The Victorian Specialist Immunization Services (VicSIS) was established in Victoria, Australia, in February 2021, aiming to enhance vaccine safety services for Coronavirus disease (COVID-19) vaccines. VicSIS supports practitioners and patients with complex vaccine safety questions, including those who experience adverse events following immunization (AEFI) after COVID-19 vaccines. VicSIS provides individual vaccination recommendations, allergy testing, vaccine challenges, and vaccination under supervision. VicSIS initially comprised of eight adult COVID-19 specialist vaccination clinics, subsequently, expanding to better support pediatric patients as the Australian vaccine roll-out extended to adolescents and children. Since their establishment to September 2021, the inaugural VicSIS clinics received a total of 26,401 referrals and reviewed 6,079 patients. Consults were initially predominantly for pre-vaccination reviews, later predominantly becoming post-vaccination AEFI reviews as the program progressed. Regardless of the type of consult, the most common consult outcome was a recommendation for routine vaccination (73% and 55% of consult outcomes respectively). VicSIS is an integral component of the COVID-19 vaccination program and supports confidence in COVID-19 vaccine safety by providing consistent advice across the state. VicSIS aims to strengthen the health system through the pandemic, bolstering specialist immunization services beyond COVID-19 vaccines, including training the next generation of vaccinology experts.
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    Strategies to prevent central line-associated bloodstream infections in acute-care hospitals: 2022 Update.
    Buetti, N ; Marschall, J ; Drees, M ; Fakih, MG ; Hadaway, L ; Maragakis, LL ; Monsees, E ; Novosad, S ; O'Grady, NP ; Rupp, ME ; Wolf, J ; Yokoe, D ; Mermel, LA (Cambridge University Press (CUP), 2022-04-19)
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    The Genetic and Molecular Basis of Developmental Language Disorder: A Review
    Mountford, HS ; Braden, R ; Newbury, DF ; Morgan, AT (MDPI, 2022-05-01)
    Language disorders are highly heritable and are influenced by complex interactions between genetic and environmental factors. Despite more than twenty years of research, we still lack critical understanding of the biological underpinnings of language. This review provides an overview of the genetic landscape of developmental language disorders (DLD), with an emphasis on the importance of defining the specific features (the phenotype) of DLD to inform gene discovery. We review the specific phenotype of DLD in the genetic literature, and the influence of historic variation in diagnostic inclusion criteria on researchers' ability to compare and replicate genotype-phenotype studies. This review provides an overview of the recently identified gene pathways in populations with DLD and explores current state-of-the-art approaches to genetic analysis based on the hypothesised architecture of DLD. We will show how recent global efforts to unify diagnostic criteria have vastly increased sample size and allow for large multi-cohort metanalyses, leading the identification of a growing number of contributory loci. We emphasise the important role of estimating the genetic architecture of DLD to decipher underlying genetic associations. Finally, we explore the potential for epigenetics and environmental interactions to further unravel the biological basis of language disorders.
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    Delivering multidisciplinary neuromuscular care for children via telehealth
    Carroll, K ; Adams, J ; de Valle, K ; Forbes, R ; Kennedy, RA ; Kornberg, AJ ; Vandeleur, M ; Villano, D ; Woodcock, IR ; Yiu, EM ; Ryan, MM ; Davidson, Z (WILEY, 2022-04-29)
    INTRODUCTION/AIMS: In response to coronavirus disease 2019 (COVID-19) pandemic restrictions int 2020, our face-to-face (F2F) multidisciplinary neuromuscular clinic (NMC) transitioned to widespread use of telehealth (TH). This study aimed to (1) understand parent/guardian, child, and clinician perceptions of TH; (2) examine TH-related changes in clinical activity; and (3) use these findings to inform a future model of care for the NMC. METHODS: A clinical audit was undertaken to examine clinical activity throughout 2018-2020. Online surveys were distributed to clinicians and parents of children attending the NMC via TH in 2020. A working group of clinicians created a checklist to guide a future hybrid model of TH and F2F care. RESULTS: Total clinical activity in 2020 was maintained from previous years; 62.8% of all appointments occurred via TH, and 82.3% of patients attended NMC by TH at least once. Ninety-nine parents (30.6% response rate), 52 children, and 17 clinicians (77% response rate) responded to the survey. All groups reported better interaction when F2F compared to TH. Eighty percent of parents identified advantages of TH and reported lower levels of stress. A lack of "hands-on" physical assessment was identified by parents and clinicians as a TH limitation. Most families (68.1% of parents; 58.8% of children) and all clinicians indicated a preference for a mix of TH and F2F NMC appointments in the future. DISCUSSION: This study has informed a checklist to guide future TH use in a new hybrid model of care. Further investigation is required to assess health impacts of TH use in pediatric neuromuscular care.
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    The Importance of Partnership in the Rollout of Triple-Drug Therapy to Eliminate Lymphatic Filariasis in the Pacific.
    Rainima-Qaniuci, M ; Lepaitai, HB ; Bhagirov, R ; Padmasiri, E ; Naseri, T ; Thomsen, R ; Won, KY ; Brant, TA ; Dodd, E ; Nua, MT ; Utu, F ; Tufa, A ; Chutaro, E ; Camacho, J ; Suiaunoa-Scanlan, L ; Thean, LJ ; Mani, J ; Hardy, M ; Samuela, J ; Romani, L ; Kaldor, J ; Steer, AC ; Faktaufon, D ; Bechu, V ; Naqio, F ; Sosene, V ; Sekihara, M ; Otaki, J ; Buhagiar, TS ; Yajima, A (American Society of Tropical Medicine and Hygiene, 2022-03-15)
    We discuss the experience of some Pacific island countries in introducing the new WHO-recommended treatment protocol for lymphatic filariasis-a triple-drug therapy composed of ivermectin, diethylcarbamazine, and albendazole. The successful rollout of the new treatment protocol was dependent on strong partnerships among these countries' ministries of health, WHO, and other stakeholders. Effective communication among these partners allowed for lessons learned to cross borders and have a positive impact on the experiences of other countries. We also describe various challenges confronted during this process and the ways these countries overcame them.
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    Social Isolation, Social Support, and Loneliness Profiles Before and After Spousal Death and the Buffering Role of Financial Resources
    Freak-Poli, R ; Kung, CSJ ; Ryan, J ; Shields, MA ; Kelley, J (OXFORD UNIV PRESS INC, 2022-04-04)
    OBJECTIVES: We provide new evidence on the profiles of social isolation, social support, and loneliness before and after spousal death for older widows. We also examine the moderating effects of gender and financial resources on changes in social health before and after widowhood. METHODS: We use 19 waves of data from the Household, Income and Labour Dynamics in Australia Survey, including 749 widowed individuals and a comparison group of around 8,000 married individuals. We apply coarsened exact matching weights and control for age and time trends. Local polynomial smoothed plots show the profiles of social health from 3 years pre- to 3 years postspousal death. All analyses were stratified by gender. RESULTS: Spousal death was strongly associated with increased loneliness for women and men, but also an increase in interactions with friends and family not living with the bereaved. For men, financial resources (both income and asset wealth) provided some protection against loneliness. Spousal death was not associated with changes in social support or participation in community activities. DISCUSSION: We demonstrate that loneliness is a greater challenge of widowhood than social isolation or a lack of social support. Our findings suggest that interventions focusing only on increasing social interactions are unlikely to alleviate loneliness following spousal death. Moreover, policies that reduce the cost of formal social participation may have limited effectiveness in tackling loneliness, particularly for women. Alternative strategies, such as helping the bereaved form a new sense of identity and screening for loneliness around widowhood by health care workers, could be beneficial.
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    Nitrogen-based Bisphosphonate Use and Ovarian Cancer Risk in Women Aged 50 Years and Older.
    Tuesley, KM ; Webb, PM ; Protani, MM ; Spilsbury, K ; Pearson, S-A ; Coory, MD ; Donovan, P ; Steer, C ; Stewart, LM ; Pandeya, N ; Jordan, SJ (Oxford University Press (OUP), 2022-06-13)
    BACKGROUND: There are few readily modifiable risk factors for epithelial ovarian cancer; preclinical studies suggest bisphosphonates could have chemopreventive actions. Our study aimed to assess the association between use of nitrogen-based bisphosphonate medicine and risk of epithelial ovarian cancer, overall and by histotype. METHODS: We conducted a case-control study nested within a large, linked administrative dataset including all Australian women enrolled for Medicare, Australia's universal health insurance scheme, between July 2002 and December 2013. We included all women with epithelial ovarian cancer diagnosed at age 50 years and older between July 1, 2004, and December 31, 2013 (n = 9367) and randomly selected up to 5 controls per case, individually matched to cases by age, state of residence, area-level socioeconomic status, and remoteness of residence category (n = 46 830). We used prescription records to ascertain use of nitrogen-based bisphosphonates (ever use and duration of use), raloxifene, and other osteoporosis medicines (no nitrogen-based bisphosphonates, strontium and denosumab). We calculated adjusted odds ratios (OR) and 95% confidence intervals (CI) using conditional logistic regression. RESULTS: Ever use of nitrogen-based bisphosphonates was associated with a reduced risk of epithelial ovarian cancer compared with no use (OR = 0.81, 95% CI = 0.75 to 0.88). There was a reduced risk of endometrioid (OR = 0.51, 95% CI = 0.33 to 0.79) and serous histotypes (OR = 0.84, 95% CI = 0.75 to 0.93) but no association with the mucinous or clear cell histotypes. CONCLUSION: Use of nitrogen-based bisphosphonates was associated with a reduced risk of endometrioid and serous ovarian cancer. This suggests the potential for use for prevention, although validation of our findings is required.