Cystic fibrosis and the transition to adult health services
Child; Female; Humans; Male; Adult; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Health Care Costs/statistics & numerical data; Delivery of Health Care/organization & administration; Great Britain/epidemiology; Child Health Services/organization & administration; Cystic Fibrosis/complications/economics/mortality/therapy; State Medicine/economics
2008
Hewer SC; Tyrrell J
Archives Of Disease In Childhood
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/adc.2008.143578" target="_blank" rel="noreferrer">10.1136/adc.2008.143578</a>
Task force 1: the changing profile of congenital heart disease in adult life
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Survival Rate; Adult; Prognosis; Aged; Middle Aged; Incidence; adolescent; Preschool; patient care team; infant; Adolescent Transitions; Newborn; United States/epidemiology; Heart Defects; Congenital/mortality/rehabilitation; Great Britain/epidemiology
2001
Warnes CA; Liberthson R; Danielson GK; Dore A; Harris L; Hoffman JI; Somerville J; Williams RG; Webb GD
Journal Of The American College Of Cardiology
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0735-1097(01)01272-4" target="_blank" rel="noreferrer">10.1016/s0735-1097(01)01272-4</a>
Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood
Child; Cross-Sectional Studies; infant; Family; Adult; Prevalence; Parent-Child Relations; Mental Health; adolescent; Preschool; Non-U.S. Gov't; infant; Newborn; Human; Support; Great Britain/epidemiology; Child Welfare/statistics & numerical data; Chronic Disease/epidemiology/psychology; Disabled Children/psychology/statistics & numerical data
OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population 411,800). SUBJECTS: Children aged 0-19 years. RESULTS: One hundred and twenty-three children were identified, giving a prevalence of 1.2/1000 children. Morbidity assessed in 93 children showed 60% in pain or discomfort, 35% unable to walk and 25% with severe cognitive impairment. Mental health problems were found in 54% of mothers and 30% of fathers, and significant emotional and behavioural problems in 24% of healthy siblings. CONCLUSIONS: Non-malignant life-threatening illness is more prevalent than reported in previous studies. Considerable morbidity is experienced by the child and their family. An individual and family approach is required. Key messages (1) The prevalence of non-malignant life-threatening illness is four times greater than previous estimates. (2) This group of conditions have significant implications for all family members. (3) Early comprehensive assessment and access to effective interventions may pre-empt later problems.
2001
Lenton S; Stallard P; Lewis M; Mastroyannopoulou K
Child: Care, Health And Development
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Place of death and palliative care following discharge from paediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; Cohort Studies; adolescent; Preschool; infant; Newborn; Hospitalization/statistics & numerical data; Palliative Care/statistics & numerical data; location of death; Pediatric/statistics & numerical data; child mortality; Great Britain/epidemiology; Home Care Services/statistics & numerical data; Hospice Care/statistics & numerical data; Patient Discharge/statistics & numerical data; Referral and Consultation/statistics & numerical data
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to Office of National Statistics death certificate data. SETTING: 31 PICUs in Great Britain. PARTICIPANTS: A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007. MAIN OUTCOME MEASURES: Place of death by palliative care discharge status. RESULTS: 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%). CONCLUSIONS: Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
Fraser LK; Miller M; Draper ES; McKinney PA; Parslow RC; Paediatric Intensive Care Audit Network
Archives Of Disease In Childhood
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/adc.2009.178269" target="_blank" rel="noreferrer">10.1136/adc.2009.178269</a>
A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care
Child; Female; Humans; Male; Cohort Studies; Prevalence; Disease Progression; Multivariate Analysis; Poverty Areas; adolescent; Preschool; infant; retrospective studies; Palliative Care/statistics & numerical data; Disease Specific; Great Britain/epidemiology; Muscular Dystrophy; Duchenne/epidemiology/mortality; Neuromuscular Diseases/epidemiology/mortality; Referral and Consultation/trends; Spinal Muscular Atrophies of Childhood/epidemiology/mortality
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.
Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC
Palliative Medicine
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216311419989" target="_blank" rel="noreferrer">10.1177/0269216311419989</a>