Life-limiting Conditions In Children Research Articles

Parents' experience of extended viewing in a paediatric hospice: a qualitative study

The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. First, this study aimed to develop a deeper understanding of how extended viewing is experienced by the parents of a deceased child (or young person) with a life-limiting condition, based in Australia. Second, this study aimed to evaluate the quality of bereavement care delivered during the first few days after death. A total of 17 bereaved parents of 13 children completed an interview. In-depth interviews were audio-recorded, transcribed verbatim and thematically analysed. While the authors acknowledge the complexity and individual nature of grief, four broad themes were identified, namely the importance of the 'physical environment' being conducive to spending time with their child; 'seeing their child'; 'time to say goodbye'; and 'supportive care'. The findings of this study reinforce that extended viewing can provide therapeutic benefits for parents, as well as the importance of a skilled palliative care nursing workforce in assisting with grief management.

A randomized controlled trial evaluating the effectiveness of a self-management program for adolescents with a chronic condition: a study protocol

BackgroundSelf-management support is increasingly viewed as an integral part of chronic condition management in adolescence. It is well recognized that markers of chronic illness control deteriorate during adolescence. Due to the increasing prevalence of long-term chronic health conditions in childhood and improved survival rates of previously life-limiting conditions in children and adolescents, significant numbers of adolescents are having to manage their chronic condition effectively as they transition to adult health care. Therapy adherence has been identified as a major challenge for young people living with a chronic condition such as cystic fibrosis, diabetes, or asthma requiring long-term pharmacological therapy and/or lifestyle modifications. Most systematic reviews on self-management interventions address adult populations. Very few intervention studies are directed at adolescents with a chronic condition who are transitioning to adult health services. This protocol describes a prospective randomized controlled trial of a standardized self-management intervention program delivered to adolescents aged 15–18 years prior to their transfer to adult care. This study has been designed to provide evidence regarding self-management programs for adolescents and is the first study to use the Flinders Program with this important, under-researched age group.MethodsA randomized controlled trial is used to investigate the effectiveness of a modified adolescent-friendly version of an adult self-management program. This program is directed at improving self-management in an adolescent cohort 15–18 years of age with a chronic condition being treated in a specialist pediatric hospital. Participants will be randomized to either usual care or the modified Flinders Program plus usual care. Data collection will include measures of specific illness control, unscheduled hospital admissions, and questionnaires to record self-management competencies, quality of life, self-efficacy, and outcome measures specific to the chronic condition at baseline, 3 months, 6 months, and 12 months after delivery.DiscussionThis study will provide a better understanding of the elements required for effective self-management programs in adolescents with a chronic condition and address some important knowledge gaps in current literature. The study will be carried out in collaboration with the Discipline of Behavioural Health at Flinders University, Adelaide, Australia, in order to inform the development of an adolescent version of the successful and validated Flinders Program™.Trial registrationAustralian and New Zealand Clinical Trials Registry (ACTRN12621000390886). Registered on April 8, 2021.

End-of-life issues in the paediatric intensive care unit

<h2>Abstract</h2> Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the population of children cared for and, consequently, the modes of death in paediatric intensive care units. In many countries, children with chronic conditions now constitute a large proportion of both admissions to paediatric intensive care units and the deaths occurring there. Managing end-of-life decisions and care is an integral part of practice and constitutes an imperative skill for all professionals working in paediatric intensive care. The process of end-of-life care involves many uncertainties and ethical, legal, religious, cultural and social considerations. A child's death will always be a tragic and challenging experience, but the way it is managed can influence the impact it has on everyone involved. This article provides a review of the issues surrounding the end-of-life process for patients in paediatric intensive care units and explores the challenges and considerations involved in decision-making to withhold or withdraw life-sustaining therapy. We discuss the practicalities of managing and optimising end-of-life care within and beyond the paediatric intensive care unit and the different aspects that healthcare teams need to address before and after a child's death.

Estimating the current and future prevalence of life-limiting conditions in children in England

Background: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. Aim: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. Design: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. Setting/participants: All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. Results: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)). The prevalence was highest among the most deprived group and in children of Pakistani origin. Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030. Conclusions: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.

Estimating the prevalence of life-limiting conditions in Queensland for children and young people aged 0-21 years using health administration data.

Objective The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland, Australia. Methods An observational study using linked administrative health data from the 2011 and 2016 calendar years was performed for all individuals with an International Statistical Classification of Diseases and Related Health Problems 10th Revision Australian Modification code relating to a life-limiting condition eligible for palliative care recorded against an admission to a public or private hospital and health service provider in Queensland or against a cause or underlying cause of death in the Queensland Registrar General Deaths. Results The overall prevalence of life-limiting conditions per 10000 population increased from 35.2 (95% confidence interval (CI) 34.2-36.2) in 2011 to 43.2 (95% CI 42.1-44.4) in 2016. This increase in prevalence was greatest for children <1 year of age and for those who identified as Aboriginal and Torres Strait Islander. Conclusion This study has estimated the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland. Estimation of the number of children and young people with life-limiting conditions can inform health service planning for paediatric palliative care in Queensland. Future research is needed to identify the number of children and young people with life-limiting conditions who do not have an admitted episode. What is known about the topic? Data from the UK indicate that the prevalence of life-limiting conditions among children and young people is increasing. However, such data are not available for the Australian population. Because prevalence data can be affected by population characteristics, it is important to establish country-specific epidemiological data rather than extrapolating data from other countries. Country-specific data can inform health planners and policy makers of the scale of the problem within a geographical and demographic context. This is essential for Australia given the diverse geographical and demographic characteristics and specific needs of Aboriginal and Torres Strait Islander peoples. What does this paper add? This study is the first to provide an estimate of the prevalence of life-limiting conditions in children and young people aged 0-21 years in Queensland. Estimates include the prevalence of life-limiting conditions in children and young people who identify as being of Aboriginal and/or Torres Strait Islander descent. What are the implications for practitioners? The prevalence of life-limiting conditions in Queensland is greater than previously thought. There is a need to grow both a generalist and specialist paediatric palliative care workforce in response to this increasing prevalence. The estimates of prevalence proportions from this study provide the foundation on which future health service activities can be built because they provide country-specific clinical and demographic characteristics.

Facing the large variety of life-limiting conditions in children.

Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The "Together for Short Lives" (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7years (range 0.0-25.0), mean duration of care 355days (range 1-2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6days in TfSL-1, 18.9days in TfSL-2, 31.7days in TfSL-3, and 31.8days in TfSL-4 (p value < 0.01).Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).What is Known:• The four TfSL (together for short lives) groups represent the four most common illness trajectories of pediatric palliative care patients.• Better understanding the palliative care needs and symptoms of children within these four TfSL groups will result in improved anticipation of clinical problems and tailored care.What is New:• In our study, TfSL-1 represented the largest individual group of patients, also requiring the most intensive care (defined by the number of visits per days of care).• Symptom cluster analysis revealed distinct symptom clusters in TfSL-1 and TfSL-3/4, which can be used to anticipate clinically common challenges in these patients.

Anticipatory prescribing and advance care planning in palliative care for children and young people

The ability to manage the distressing symptoms of life-limiting conditions in children outside of hospital is essential if families are to receive care in their place of choice. A key tool to support practitioners achieve this is the advance care plan. Issues of polypharmacy and comorbidity are common in this population. Many medicines used in children's palliative care are prescribed off-label. Assessment, anticipation and management of symptoms should be child-focused, family-centred, holistic and interdisciplinary, and should be considered a continual process rather than as a single event. In this context, there are a number of barriers to effective interdisciplinary working. Practitioners must ensure effective relationships and communication between health professionals, teams and across organisational boundaries, where individuals work together to share knowledge, skills and expertise. Practitioners must also have access to training and ongoing support and supervision in order to practise safely.

Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions

Background: Recent estimates of the number of children and young people with life-limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. Aim: To compare routine inpatient data and death records as means of identifying life-limiting conditions in children and young people. Design: Two national cohorts of children and young people with a life-limiting condition (primary cohort from England with a comparator cohort from Scotland) were identified using linked routinely collected healthcare and administrative data. Participants: A total of 37,563 children and young people with a life-limiting condition in England who died between 1 April 2001 and 30 March 2015 and 2249 children and young people with a life-limiting condition in Scotland who died between 1 April 2003 and 30 March 2014. Results: In England, 16,642 (57%) non-neonatal cohort members had a life-limiting condition recorded as the underlying cause of death; 3364 (12%) had a life-limiting condition-related condition recorded as the underlying cause and 3435 (12%) had life-limiting conditions recorded only among contributing causes. In all, 5651 (19%) non-neonates and 3443 (41%) neonates had no indication of a life-limiting condition recorded in their death records. Similar results were seen in Scotland (overall, 16% had no indication of life-limiting conditions). In both cohorts, the recording of life-limiting condition was highest among those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses. Conclusion: Using death record data alone to identify children and young people with life-limiting condition – and therefore those who would require palliative care services – would underestimate the numbers. This underestimation varies by age, deprivation, ethnicity and diagnostic group.

Comparing identification of children and young people with a life limiting condition from cause of death with use of an ICD-10 coding framework applied to routine clinical data

ABSTRACTObjectivesTo compare methods of estimating prevalence of life limiting conditions (LLC) among children and young people (CYP) using (i) cause of death recorded on death certificates and (ii) diagnostic codes in routinely collected inpatient and birth records.&#x0D; ApproachCYP with a LLC were identified from NHS inpatient and birth records in Scotland from 1 April 2003 to 30 March 2014 using a LLC ICD-10 coding framework. The cohort was restricted to individuals who died in the study period. For each cohort member, the LLC coding framework was used to determine whether a diagnosis identified as a LLC was recorded as the underlying cause of death. For those without LLC as an underlying cause of death, the underlying cause was checked to determine whether it was related to LLC – either itself indicative of LLC when recorded on a death certificate or related to one or more of the LLCs identified in the individual’s inpatient and birth records. Finally, for those with underlying cause of death neither a LLC nor related to a LLC, the contributing causes of death were checked against the coding framework for LLC; where found, the individual was marked as having a LLC as a contributing cause of death. These analyses were undertaken for the whole cohort, per year, by age groups and by diagnostic categories.&#x0D; Results20436 CYP with a LLC were identified between 1 April 2009 and 31 March 2014, of which 2249 had died and had a death register record. Of these, 1291 (57%) had a LLC as underlying cause of death; 319 (14%) had an LLC-related underlying cause of death and 268 (12%) had LLC only among contributing causes of death. 371 (16%) had no indication of LLC in their death records. Recording of a LLC as underlying cause of death was lower (41%) amongst under 1 year olds and also varied widely by diagnostic group.&#x0D; ConclusionAround one in six of CYP identified using the coding framework as having a LLC (and almost one in five of under 1s) would not have been so identified using all causes of death in death records. More than a quarter (28%) would be missed if only underlying cause of death was used. This, combined with longer survival times, means use of death records has the potential to greatly underestimate prevalence of LLC in children and young people.

Prevalence of life-limiting conditions in children and young people in England: Time trends by area type

Palliative care services in England lack data on the number of children with ‘life limiting conditions’ (LLCs). Recent research determined that the prevalence of LLCs in children in England was double previous estimates. We build on this by analysing time-trends in the prevalence of LLCs by small area deprivation and geodemographic area types. Prevalence is highest for children aged less than one year but time trends show no increase for the youngest age group but significant increases for older children. These increases are mirrored by a decrease in all cause mortality for children suggesting improved survival. Rates are highest in more deprived areas and those typified by multicultural populations. Increasing prevalence and number of cases over time may require increased paediatric palliative care service provision in the future.

Rising national prevalence of life‐limiting conditions in children in England

Child: Care, Health and DevelopmentVolume 38, Issue 4 p. 606-607 CURRENT LITERATURE Rising national prevalence of life-limiting conditions in children in England Richard Reading, Richard ReadingSearch for more papers by this author Richard Reading, Richard ReadingSearch for more papers by this author First published: 04 June 2012 https://doi.org/10.1111/j.1365-2214.2012.01404_3.xRead the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Volume38, Issue4July 2012Pages 606-607 RelatedInformation

Rising National Prevalence of Life-Limiting Conditions in Children in England

Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.

Rising National Prevalence of Life-Limiting Conditions in Children in England

Rising National Prevalence of Life-Limiting Conditions in Children in England

Prevalence of life limiting illness in children and young people in the UK

BackgroundLife-limiting illness describes conditions with no reasonable hope of cure that will ultimately be fatal. There is little national or local data are available to estimate the burden of these...

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals’ rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.