EACH page also notes the relevant appendix from which additional information is obtained for particular conditions.

Transcription

1 Epidemiology & Health Science Team (Public Health) Topic: INDICATIVE NUMBERS OF CHILDREN WITH GIVEN CONDITIONS FOR ARGYLL & BUTE CHP (NHS HIGHLAND) The following pages present the number of children who MAY be affected by a particular condition or group of conditions. The conditions are given on each of 5 pages depending on the broad type they represent i.e. 1. Public health & Well-being 2. Specialist services 3. Long-term 4. Mental health & well-being 5. Maternity & newborn EACH page relating to types 1 to 4 above is arranged to provide numbers for Nursery, Primary and Secondary school populations pertaining to the Argyll & Bute CHP area as at mid 2010 (NRS estimates). The arrows depict ingoing and outgoing cohort numbers (transitional years) for each school type. EACH page also notes the relevant appendix from which additional information is obtained for particular conditions. There are 3 important caveats to the information 1. The rates from which the numbers of children/babies have been derived have been obtained from the literature. These rates have been applied to the child populations relevant to the Argyll & Bute CHP area. They WILL NOT necessarily reflect the actual or expected number locally as many of these conditions are influenced by population characteristics such as social and economic conditions. NO attempt has been made to accommodate this 2. The numbers derived are based on conditions as if they are mutually exclusive of each other whilst in reality this will not always be the case e.g. co-existence of autism and epilepsy 3. This document is an extension of the original guide previously published: Guide in support of assessing the health needs of children in NHS Highland: expected prevalence rates of various conditions (link to guide). This document should only be used with reference to the guide. December 2012 Epidemiology & Health Science Team, NHS Highland 1

2 ARGYLL & BUTE CHP AREA Indicative numbers of children with: Conditions relevant to Public Health & Wellbeing: Argyll & Bute CHP ARGYLL & BUTE School Populations Nursery (3 to 4 years) Obesity 163 Alcohol Substance Misuse Smoking Teenage Pregnancy N/A Primary (5 to 11 years) Obesity 877 Alcohol 18 Substance Misuse Smoking 6 Teenage Pregnancy N/A Secondary (12 to 17 years) Obesity 1,049 Alcohol 1,430 Substance Misuse 984 Smoking 660 Teenage Pregnancy 60 = not known N/A = not applicable Transitional Populations 2 year olds Obesity 82 Alcohol Substance Misuse Smoking Teenage Pregnancy N/A 4 year olds Obesity 80 Alcohol Substance Misuse Smoking Teenage Pregnancy N/A 11 year olds Obesity 167 Alcohol 20 Substance Misuse Smoking 7 Teenage Pregnancy N/A 16 year olds Obesity 149 Alcohol 352 Substance Misuse 267 Smoking 170 Teenage Pregnancy 21 See appendix 1 for notes on conditions relevant to Public Health & Wellbeing Epidemiology & Health Science Team, NHS Highland 2

3 Indicative numbers of children with: Specialist Conditions: Argyll & Bute CHP School Populations Nursery (3 to 4 years) Diabetes 1 Asthma 122 Cancer 1 <1 Palliative 3 Epilepsy 3 Cystic Fibrosis <1 IBD <1 Endoscopy & Colonoscopy 3 Enteral/Parenteral Nutrition 1 Rheumatoid Conditions 2-3 Primary (5 to 11 years) Diabetes 11 Asthma 475 Cancer 1 <1 Palliative 10 Epilepsy 26 Cystic Fibrosis 2 IBD 1 Endoscopy & Colonoscopy 10 Enteral/Parenteral Nutrition 6 Rheumatoid Conditions 6-12 Secondary (12 to 17 years) Diabetes 32 Asthma 485 Cancer 1 <1 Palliative 10 Epilepsy 33 Cystic Fibrosis 2 IBD 1 Endoscopy & Colonoscopy 10 Enteral/Parenteral Nutrition 6 Rheumatoid Conditions Incidence only i.e. nos. of newly diagnosed cancers during 1 year = not known N/A = not applicable ARGYLL & BUTE Transitional Populations 2 year olds Diabetes <1 Asthma 62 Cancer 1 <1 Palliative 1 Epilepsy 2 Cystic Fibrosis <1 IBD <1 Endoscopy & Colonoscopy 1 Enteral/Parenteral Nutrition 1 Rheumatoid Conditions year olds Diabetes 1 Asthma 60 Cancer 1 <1 Palliative 1 Epilepsy 2 Cystic Fibrosis <1 IBD <1 Endoscopy & Colonoscopy 1 Enteral/Parenteral Nutrition 1 Rheumatoid Conditions year olds Diabetes 5 Asthma 79 Cancer 1 <1 Palliative 2 Epilepsy 5 Cystic Fibrosis <1 IBD <1 Endoscopy & Colonoscopy 2 Enteral/Parenteral Nutrition 1 Rheumatoid Conditions year olds Diabetes 7 Asthma 80 Cancer 1 <1 Palliative 2 Epilepsy 8 Cystic Fibrosis <1 IBD <1 Endoscopy & Colonoscopy 2 Enteral/Parenteral Nutrition 1 Rheumatoid Conditions 1-2 See appendix 2 for notes on specialist conditions Epidemiology & Health Science Team, NHS Highland 3

4 Indicative numbers of children with: Long-term conditions: Argyll & Bute CHP Nursery (3 to 4 years) Hearing impairment 3 Visual impairment 2-3 Speech & Language 24 Stuttering 1 22 Disabilities 2 58 Additional Support Needs 3 13 Exceptional Needs <1 DCD 4 31 Muscular Dystrophy <1 Primary (5 to 11 years) Hearing impairment Visual impairment 6-12 Speech & Language 567 Stuttering 1 88 Disabilities Additional Support Needs Exceptional Needs 2 DCD Muscular Dystrophy <1 Secondary (12 to 17 years) Hearing impairment Visual impairment 7-13 Speech & Language 473 Stuttering 1 34 Disabilities Additional Support Needs Exceptional Needs 2 DCD Muscular Dystrophy <1 1 Caution as wide confidence intervals apply 2 Moderate and severe as per DDA. Caution as wide confidence intervals apply 3 As per SNS 4 Developmental Co-ordination Disorder = not known N/A = not applicable School Populations ARGYLL & BUTE Transitional Populations 2 year olds Hearing impairment 1 Visual impairment 1-2 Speech & Language Stuttering 1 11 Disabilities 2 29 Additional Support Needs 3 6 Exceptional Needs <1 DCD 4 16 Muscular Dystrophy <1 4 year olds Hearing impairment 2 Visual impairment 1-2 Speech & Language 12 Stuttering 1 11 Disabilities 2 28 Additional Support Needs 3 6 Exceptional Needs <1 DCD 4 15 Muscular Dystrophy <1 11 year olds Hearing impairment 2-3 Visual impairment 1-2 Speech & Language 132 Stuttering 1 15 Disabilities 2 86 Additional Support Needs 3 25 Exceptional Needs <1 DCD 4 21 Muscular Dystrophy <1 16 year olds Hearing impairment 3 Visual impairment 1-2 Speech & Language 83 Stuttering 1 6 Disabilities 2 97 Additional Support Needs 3 27 Exceptional Needs <1 DCD 4 23 Muscular Dystrophy <1 See appendix 3 for notes on long-term conditions Epidemiology & Health Science Team, NHS Highland 4

5 Indicative numbers of children with: Conditions relevant to Mental Health & Well-Being: Argyll & Bute CHP School Populations Nursery (3 to 4 years) Autism 13 HKD N/A ADHD (diagnosed) N/A Conduct disorders Emotional disorders Any mental health disorder Bipolar disorder N/A Major depression Self-harm Eating disorders Primary (5 to 11 years) Autism 49 HKD 96 ADHD (diagnosed) 31 Conduct disorders 317 Emotional disorders 171 Any mental health disorder 506 Bipolar disorder N/A Major depression 61 Self-harm Eating disorders Secondary (12 to 17 years) Autism 52 HKD 92 ADHD (diagnosed) 32 Conduct disorders 427 Emotional disorders 324 Any mental health disorder 744 Bipolar disorder 39 Major depression 194 Self-harm Eating disorders 91 = not known N/A = not applicable ARGYLL & BUTE Transitional Populations 2 year olds Autism 6 HKD N/A ADHD (diagnosed) N/A Conduct disorders Emotional disorders Any mental health disorder Bipolar disorder N/A Major depression Self-harm Eating disorders 4 year olds Autism 6 HKD N/A ADHD (diagnosed) N/A Conduct disorders Emotional disorders Any mental health disorder Bipolar disorder N/A Major depression 8 Self-harm Eating disorders 11 year olds Autism 8 HKD 15 ADHD (diagnosed) 5 Conduct disorders 69 Emotional disorders 53 Any mental health disorder 121 Bipolar disorder 6 Major depression 32 Self-harm Eating disorders year olds Autism 9 HKD 16 ADHD (diagnosed) 6 Conduct disorders 75 Emotional disorders 57 Any mental health disorder 131 Bipolar disorder 7 Major depression 34 Self-harm Eating disorders 16 See appendix 4 for notes on conditions relevant to Mental Health & Wellbeing Epidemiology & Health Science Team, NHS Highland 5

6 Indicative numbers of births expected with: Conditions relevant to Maternity & Newborn: Argyll & Bute CHP Area Condition Approx. nos. expected (based on the number of births in 2011) Screenable conditions Heart anomalies Circulatory anomalies Permanent Congenital Hearing Impairment (PCHI) Spinabifida/Anencephaly (NTDs) Downs Syndrome Cleft palate Cleft lip +/- Cleft palate Cystic Fibrosis Sickle-cell Disease Congenital Hypothyroidism (CHT) Phenylketouria (PKU) Medium chain Acyl-CoA Dehydrogenase Deficiency (MCADD) 2 every year 2 every year 1 every year 1 every 1 to 3 years 1 every 1 to 2 years 1 every 2 years 1 every 2 years 1 every 3 years 1 every 3 years 1 every 5 years 1 every 11 years 1 every 14 years Low birth weights < 2500g 47 every year < 1500g 7 every year Other conditions Neo natal abstinence syndrome Cerebral palsy Foetal Alcohol Syndrome Muscular dystrophy 3 every year 2 every year 1 every year 1 every 5 years See appendix 5 for notes on conditions relevant to Maternity & Newborn Epidemiology & Health Science Team, NHS Highland 6

7 Appendix 1: Notes for Public Health & Well-being Obesity: Comparison of the most recent survey (2009) 1 with previous Scottish Health surveys does not reveal any clear upward or downward trend in rates amongst children under 16 years. In contrast, there was an upward trend in those aged (nearly double that in 1995). Rates increase with age in both children and in adults up to the age of 65. Differences between genders are greater in the younger adults than in children under 16 years with 15.5% of females aged years obese compared to 11% of males in this age group. Risk factors 2 for obese children have been found to be (1) dietary habit (junk food) (2) Low rates of physical exercise (3) Sleep deprivation (4) parental obesity (both genetic and non-genetic factors) (5) Socio-economic situation with lower SES in childhood associated with increased fatness in adulthood (6) high birth weight (7) various physical conditions, e.g. muscular dystrophy, hypothyroidism References: 1 The Scottish Health Survey 2009 ( 2 Obesity in Children, PatientPlus article 28 th July Alcohol: Prevalence increased with age and higher rates reported by boys and in those from lower family affluence 1. Drunkenness was more likely to be reported by girls from the age 13 years 2. However, self-reported behaviour may not reflect actual behaviour and it is difficult to get consistent data on prevalence due to different questions being asked and limited ages covered in the various surveys.. Risk for alcohol consumption in children include 2 (1) parental drinking (2) Poor quality relationships with parents (3) Parental behaviour management (4) Peer factors.there is a higher risk in those who have started to drink at an early age (13 years and under) to experience drinking problems in adulthood. References: 1 Young People's Health in Great Britain and Ireland Guidance on the consumption of alcohol by children and young people: report by CMO, DoH 17 th December Substance misuse: Prevalence rates as reported within the last month, have decreased between 2004 and Within 15 year olds, boys reported higher rates than girls 1 Cannabis was by far the most common drug reported to be used 1. The rates of reported cannabis use were higher in 15 year olds in Scotland and lowest in England in and higher rates were reported in those with lower family affluence 2. References: 1 SALSUS Young Peoples Health in Great Britain and Ireland Smoking: The proportions of regular smokers aged 13 and 15 years have substantially declined from the peaks measured in 1996 and Nearly one half of 13 year olds and 40% of 15 year olds reported they would like to give up. Overall, girls were more likely to report daily smoking and the highest rate was reported in Scotland and the lowest rate in England in Risks for smoking were: (1) smoking prevalence of parents and friends (2) low family affluence particularly in girls References: 1 SALSUS Young Peoples Health in Great Britain and Ireland Teenage pregnancy: Fairly steady rates over the last 10 years. Overall the abortion rate is considerably lower than the delivery rate (by a factor of 2) but in those aged under 16 years, the rate is higher than the delivery rate. Rates in Highland Council are higher than in Argyll & Bute but lower than the national average. In 2008, the abortion rate in the under 20 years age group for NHS Highland was the lowest in Scotland. Rates of teenage pregnancy are four times higher in the most deprived areas compared to the least deprived areas. Reference: (ISD ) Epidemiology & Health Science Team, NHS Highland 7

8 Appendix 2: Notes for Specialist conditions Diabetes: Type 1 diabetes represents over 97% of the diabetes prevalent in those aged under 20 years 1. The incidence of type1 in children has been increasing by 2-3% each year since Type 1 diabetes is managed by insulin. The cause of type 1 diabetes is not known but appears to be an auto-immune response against the pancreatic insulin producing cells. In contrast Type 2 makes up a small proportion of the diabetes in children but has increased over the years considered to be the result of increased obesity which is a risk factor for its development. Management of both types of diabetes is important. In type 1 diabetes, Diabetic Ketoacidosis may occur-annual incidence is 1-5% in type 1 diabetics and is commoner in children 2. This condition requires urgent hospital management. Precipitating factors include poor compliance with insulin treatment and infections amongst others. Therefore it is important that those caring for children should be aware of the management of diabetes. References: 1 The Scottish Diabetes Survey Diabetic Ketoacidosis 6 th November 2008, PatientPlus article Asthma: Prevalence of ever doctor-diagnosed asthma in Scottish children aged 0 to 15 years was higher in boys (20%) than in girls (12%). Rates were also higher in those from low Socio-economic groups and deprived areas 1. References: 1 Scottish Health Survey 2003 Volume 3 ( ) Haematological cancers: Leukaemias & Lymphomas are one of the two main cancers of childhood & adolescents making up over 40 % of all cancers in the under 15 year olds and 38% in the year olds. the second most common cancers are those of the central nervous system (mainly brain Tumours). These have increased but survival rates have also increased. Prevalence rates are not routinely available but incidence rates (the nos. of new cases per year) are more relevant in quantifying the need for specialist services. References: Cancer in adolescents and young adults in Scotland, , ISD as at 22/03/2011 and Childhood cancer in Scotland : trends in incidence, mortality and survival Non-Haematological cancers: The main cancers are tumours of the brain. Cancers arising in those aged 0-4 make up nearly 50% of all cancers within the age group 0 to 14 years. Overall, there are more cancers in boys than girls. References: Cancer in adolescents and young adults in Scotland, and Childhood cancer in Scotland : trends in incidence, mortality and survival Palliative care needs: Using uptake of ACH (Association of childrens Hospices), palliative care need was estimated as: for every one death requiring palliative care, there will be 10 living children requiring palliative care 1. By condition, Cystic fibrosis and cerebral palsy made up over one half of the total estimated to require palliative care 2. The main causes in the 1-4y age band were congenital malformations, Deformations & Chromosomal abnormalities and Diseases of the nervous system, whilst in older children, neoplasms made an increasingly greater proportion. 63% of those aged 0 to 19y had a need to access social care as well as healthcare. Of the 0-19y deaths, 68% died in hospital, 22% at home and 8% in the hospice. References 1 Palliative care statistics fort children & young adults, Cochrane H et al Palliative care needs of children & young people in the East of England, ACPHIT occasional report Aug-08, amended Feb continued overleaf Epidemiology & Health Science Team, NHS Highland 8

9 Notes for Specialist conditions continued. Epilepsy: One in five with epilepsy have learning or intellectual disabilities 1. The prevalence of epilepsy has been measured to be 25% higher in the most deprived relative to the least deprived areas 1. Chldhood epilepsy is twice as common as epilepsy in adults 2. The causes of epilepsy in children include (1) Malformations (e.g. Tuberous sclerosis) (2) Infections (meningitis, encephalitis) (3) Electrolyte disturbances (4) Trauma (5) Metabolic defects 2. Reference: 1 Epilepsy prevalence, incidence and other statistics, The Joint Epilepsy Council (August 2005) ( 2 Epilepsy in children & young people, PatientPlus article, 7 th September ) Cystic Fibrosis: Average age at diagnosis is 5 months with those diagnosed in adulthood (<6%) being at the milder end of the severity spectrum 1,2. Symptoms are caused by thickened secretions which affect the lungs and digestive tract and other organs. Ongoing poor nutrition combined with persistent lung symptoms and repeated chest infections often causes failure to thrive in young children, delayed maturation and sexual development in teenagers, and general poor health at any age 3. Lung deficit is one of the main problems, the USA register reports >40% normal, 30% with mild and 5% with a severe respiratory deficit i.e. requiring oxygen 4. Other problems are diabetes, pancreatitis, nose polyps, osteoporosis. A multidisciplinary Healthcare professional team is needed with specialist CF input for many cases. The only risk factor is family history and many cases are now picked up at birth through the blood spot screening which was implemented in 2003 in Scotland. The UK CF register closed after 2007 & the 2004 prevalence data was used in preference due to the proportion of incomplete data in A managed clinical network is to be set up for CF in Scotland. 60% of cases are under 16 years and currently 50% will be expected to live over 38 years. With better management, the life-expectancy is increasing to years 5. References: Fibrosis.htm Gasteroenterological problems: As a specialist service will include management/investigation of GI problems (e.g. Coeliac/GI bleeds, GI reflux IBD (includes Crohn s, Ulcerative Colitis & Indeterminate Colitis etc) Liver disorders and nutrition 1. Parenteral (direct feeding into blood stream) is needed for intestinal failure. Enteral feeding is mainly by PEG into the stomach (78%, 21% by naso-gastric and <1% into the Jeujenum). It provides supportive nutrition in those with malignant conditions, neurological disabilities such as cerebral palsy, brain injury and a primary therapy in those with Cerebral palsy and Crohn s disease. It is also used as a temporary support for pre-term babies in the hospital and after discharge home. There are guidelines with standards of care for enteral feeding in children in the community 2. References: 1 A Guide for Purchasers of Paediatric Gastroenterology, Hepatology and Nutrition Services, British Society for Paediatric Gastroenterology, Hepatology and nutrition, QIS, Caring for children in the Community receiving enteral tube feeding, QIS, Best practice statement Rheumatoid conditions: Onset of juvenile chronic arthritis occurs under 16 years and has 3 main sub-sets which determine the prognosis. Two of the sub-sets are more common in girls. 80% affected will regain normal function. 50% of all cases are Pauciarticular and 15% of these will progressively be more affected. The spectrum in respect of severity, life-time disability, resolution and remissions is wide. There is often visual impairment with those affected with pauciarticular arthritis and prognosis is worst for those with onset before the age of 5 years. References: Juvenile Chronic Arthritis: PatientPlus article21st Jan and Rabinovich CE Juvenile Rheumatoid Arthritis in emedicine June Epidemiology & Health Science Team, NHS Highland 9

10 Appendix 3: Notes for Long-term conditions Hearing Impairment: there is extreme uncertainty in terms of how many children are deaf. The NDCS estimate that local Authorities in 2007 in Scotland recorded only 50% of the estimated number of deaf children 1. There are 2 types of hearing loss (1) conductive, prevalence of 4% of school children (2) sensorineural, prevalence of 0.3% of children 2. It is the latter that is mostly a permanent impairment, the former although more common (e.g. Glue ear) tends not to be. Most sensorineural hearing loss is congenital or acquired perinatally with 10-20% acquired postnatally. Causes include (1) genetic (50%) (2) Intrauterine (8%) including congenital infection (e.g. rubella); maternal drugs (alcohol/drugs); (3) Perinatal (12%) e.g. prematurity, low birth weight (4) postnatal (30%) childhood infections (e.g. meningitis) (5) Unknown (20-30%) 2. References: 1 How many deaf children are there in Scotland? No one knows. National Deaf Children s Society 2 Deafness in Children PatientPlus article 22 nd June Visual Impairment: Serious visual loss in childhood is relatively uncommon-there will be 0.6 per 1000 per year developing severe visual impairment or becoming blind by the their 16 th birthday.the prevalence rate of 2 per 1000 includes those with some visual loss (<6/18 to 6/60); SVI (<6/60 to 3/60) and blindness (<3/60 to no light or visual field) according to the WHO classification. The children with mild visual loss considerably outnumber those with SVI or blindness but in the longer term they will require relatively more resources than the minority with more severe visual impairment. High risk groups to have visual impairment are (1) Sensorineural Hearing Impairment; (2) Neurodevelopmental problems e.g. Downs Syndrome (3) Family history of ophthalmic problems e.g. retinoblastoma. The prevalence of reading difficulties in school-aged population is 100 per 1000 (defined as inability to read at epected level despite intelligencebeing within the normal range, and although this will include those with visual impairment, the vast majority are unrelated to the eye. Reference: Vision testing & screening in young children, PatientPlus article,12 th January Children.htm Speech & language: They can be mild to severe and shorter to longer term. Also they can be a primary condition or a secondary condition-the latter include cognitive, autistic, learning, hearing, behaviour or emotional conditions. Approximately there are twice as many boys affected as girls. ( Stuttering: Prevalence is higher in children aged 2 to 10 years and lower in adolescents. The prevalence is also found to be 2 to 3 times higher in boys than girls (The treatment of Stuttering in the young school-aged child (2005) ed. Roberta lees & Cameron Stark) Disabilities: DDA defined & includes limiting long-standing illness, disability or infirmity experiencing one or more significant difficulties or health problems. Also includes those who if do not take medication, will experience such difficulties/problems. The prevalence is based on an annual x-sectional survey of private households & therefore excludes those in NHS & non-nhs establishments who have disabilities. Rates are higher in boys, lowest in those aged 0-4y, increasing until 12-15y after which it falls slightly. The prevalence of disability is higher in the lower income quintiles and the frequency of lone parents is also higher (1/3 versus 1/4 of non-disabled). In contrast SNS children are those registered on an electronic system (Support Needs System) implemented by 11 Health Boards and assessed as requiring additional support needs. The rates follow the same pattern in respect of gender and age described for the DDA defined disabilities. Although the profile by type of impairment is not completely reported, at least 25% have a severe impairment of which the two most common are Learning & Mental functions and Communication. prevalence of children with exceptional healthcare needs (CEN) has been reported by the national Managed Clinical Network for CEN using criteria that will include only those who have severe impairment together with enteral/parenteral feeding or have severe impairment and require ventilation/cpap*. Impairments must also last for more than 6 months and are ongoing. The profile from Lothian indicated 10% ventilator dependent (prevalence of 0.03/1000), 10% CPAP dependent and 88% require enteral feeding (prevalence of 0.24/1000). * refers to Continuous Positive Airway Pressure continued overleaf Epidemiology & Health Science Team, NHS Highland 10

11 Notes for Long-term conditions continued. Developmental Co-ordination Disorder (DCD): Difficulties include clumsiness, lack of co-ordination and problems with language, perception & thought. Risk factors are (1) prematurity (<37wks gestation); (2) low birth weight; (3) Family History (4) drinking, smoking, drug misuse during pregnancy. In the majority (90%) it is a life-time condition. More common in boys. ADHD is a commonly associated condition (50% of those with DCD). Muscular Dystrophies: Duchenne s dystrophy is the most common of those with an onset in childhood. It is linked to the x-chromosome so is almost exclusively found in boys. Symptoms are clinically present by the age of 3 years and most will need a wheelchair by the age of 12 years. Historically the life-expectation was 20 years but affected individuals are living longer due to better cardiac and respiratory care 1. References: 1 Duchenne s Muscular Dystrophy A PatientPlus article, 15 th November Epidemiology & Health Science Team, NHS Highland 11

12 Appendix 4: Notes for Mental health & well-being Autism: Has a triad of impairments in social interaction, imaginative thought and communication. There is a spectrum of disability, from the most severely affected who cannot produce any meaningful communication to those who are high functioning, articulate but socially awkward and viewed as odd (typically those with Asperger syndrome). Over 80% are boys. Associated disorders are epilepsy (25% of autistic children), visual and/or hearing impairment and depression particularly in adolescents. References: Autism. PatientPlus article 27 th January HKD/ADHD: The survey of the mental health of children in Great Britain in reported that children with HKD are predominantly boys (86%), were more likely to live with lone parents, have parents with no educational qualifications or live in households with lower weekly income than those without HKD. In contrast, surveys have measured higher rates of ADHD but a Scottish review reported that Health Boards were only aware of 50% of the expected number of children with a diagnosis of ADHD 2. References: 1 The Mental Health of children and young people in Great Britain, 2004, DoH 2005, Green H et al 2 ADHD Services over Scotland: report of the Implementation Review Exercise, April Conduct Disorders: More common in boys and more likely to be in the older age groups. In contrast, Oppositional Defiant Disorder (ODD) although again more common in boys, is more common in older than younger children. Symptoms of ODD appear by the age of 8 years and it is estimated that 50-65% also have ADHD (or 35-50% of ADHD children will also demonstrate ODD). Emotional Disorders: More common in girls and in older children. Anxiety disorders constitute the majority of them. Any mental health disorder: Bipolar Disorder: Is an adult disorder that can often have an early onset in adolescence with it manifesting most commonly between ages 17 to 29y and equally in males & females and has a relapsing & remitting course throughout life. There is a genetic component with greater risk if parents are also affected. Major depression: Often with comorbidity of other psychological disorder & is twice as common in females. 10% spontaneously recover, 50% still persistent at 12 m and 30% can have recurrences within 5 years. Greater risk of self-harm. A third of those undergoing a depressive episode attempt suicide with 2-3% dying from it. Risk factors include amongst others,family discord, physical, sexual or emotional abuse. Self-harm: Rare before puberty with 15-24y females and 25-34y males being the most common age bands presenting to hospital. More girls (11%) report self-harm than boys (3%) in a survey of 15-16y olds. There are many risk factors including domestic abuse, but the most severe and persistent self-harm occur in those with a psychiatric disorder. Eating Disorders: Bulimia more common than Anorexia but is not as life-threatening. All are more common in girls, 90% of anorexia cases are in females & in the 1990s anorexia was associated with the highest relative mortality rate of all mental health disorders. Social, psychological and genetic mechanisms contribute to an eating disorder Epidemiology & Health Science Team, NHS Highland 12

13 Appendix 5: Notes for Maternity & newborn MCADD: Healthy most of time-need dietary mgt-prolonged fasting/infections can lead to drowsiness/coma/sudden death Ref. The UK NSC policy on Medium Chain Acyl CoA Dehydrogenase Deficiency (MCADD) screening in newborns PKU: Management is through a dietary programme of certain protein restriction and supplementation including avoidance of phenylalanine and supplementation with tyrosine. The outlook is good if therapy and diet are adhered to. There is some uncertainty in relation to the life-time status and the degree of dietary management. Delayed development, cognitive impairment and in cases of untreated pregnant PKU mothers, congenital malformations of the offspring are complications of PKU. Ref. Phenylketonuria, PatientPlus article, 15-Oct CHT: Good prognosis if treated with thyroxine, if untreated there will be restricted growth & a risk of severe learning difficulties. Ref. Pregnancy & Newborn Screening Standards Oct Cystic Fibrosis: Multi-organ disease & needs individually-tailored management. Need for tertiary care & average life-expectancy for those born now is 40-50y Ref. Cystic Fibrosis PatientPlus article, 02-June 2010) Sickle cell disease-: Children need regular review by Specialist centre & treatments such as blood transfusions and protection from infections. Complications can shorten life e.g. infections. Average life-expectancy is + 50y but likely to go up Ref. PatientPlus article, 29-Jan Anaemia.htm PCHI: 26% have multiple additional disorders; 13% have an additional systemic disorder and 10% a visual impairment Ref. Davis A, Bamford J, Wilson I, et al A Critical Review of the Role of Neonatal Hearing Screening in the Detection of Congenital Hearing Impairment. Health Technology Assessment, 1(10): i-iv, Neural Tube Defect: There are two types: (1) Anencephaly are mainlty still-born or die soon after birth. (2) Spina Bbfida has a spectrum of severity & needs individually-tailored management. Most of these arise from parents without any family histry. The risk of NTDs is significantly reduced with Folic acid supplementation before conception and continued for the first 12 weeks of pregnancy. Ref. NHS Evidence genetic conditions, July 2005 Neural Tube defects Downs Syndrome:10% die before age 5 years. Average Life-expectancy is 50-55y years. 50% have one or more serious congenital anomaly, mainly Heart defects and complications include thyroid disease, epilepsy and celiac disease. Ref. NHS Evidence genetic conditions Jan Heart/circulatory anomalies-wide spectrum from mild to life-threatening. Some genetic conditions e.g. Down s and Turner s syndromes are associated with a higher iincidence. Maternal Diabetes and maternal PKU are also risk factors Ref. Congenital heart Disease in Children, a PatientPlus article 03-mar continued overleaf Epidemiology & Health Science Team, NHS Highland 13

14 Notes for Maternity & newborn continued. Cleft palate : 50% have both cleft lip and palate. Requires specialised surgical care. Support also required for feeding, speech & language, dental psychological and hearing (susceptible to ear infection). Maternal Folic acid supplementation before and during early (12 weeks) pregnancy reduces risk by one half. (CKS as at 07/04/ Low birth weights (LBW): The majority of small for gestational age babies have no significant morbidity or mortality but some have a greater risk of still birth, intrapartum hypoxia, neonatal complications, impaired neurodevelopment and possibly greater risk of type 2 diabetes and hypertension in adulthood. Multiple risk factors for LBW: rates are higher in women smoking in pregnancy and in socio-deprived circumstances. Ref. PatientPlus article, Small for gestational age babies, 11-Oct Foetal Alcohol Syndrome (FAS): spectrum of severity, main risk is maternal alcohol consumption but genetic factors can affect foetal vulnerability to FAS. Three main components: (1) facial abnormality (2) intrauterine growth retardation & failure to catch up (3) Mental problems of cognitive impairment, learning difficulties & impulsiveness Foetal Alcohol Syndrome, PatientPlus article, 23-Jan ) Muscular Dystrophies: Duchenne s dystrophy is the most common of those with an onset in childhood. It is linked to the x-chromosome so is almost exclusively found in boys. Symptoms are clinically present by the age of 3 years and most will need a wheelchair by the age of 12 years. Historically the life-expectation was 20 years but affected individuals are living longer due to better cardiac and respiratory care Ref. Duchenne s Muscular Dystrophy, A PatientPlus article, 15 th November Neonatal Abstinence Syndrome (NAS): Is a group of problems for babies when withdrawing from narcotics during pregnancy. Most common cause is opiates (Heroin/methadone). Most symptoms occur within 24 to 72 hors after birth and these can last for 1 week up to 6 months. Symptoms vary and include poor growth, sleeping difficulties, rapid breathing, tremor/jittering.ref. Health Scotland, 12-Mar-2009, Caring about health: Improving the health of looked after and accommodated children in Scotland Maternal drug misuse rates are highest in mothers aged under 30 years (75% of all) and in women from the highest deprivation quintile (20 per 1000 births) Ref. SD Drug Misuse Scotland Cerebral Palsy: Encompasses a range of movement problems caused by damage or anomalies of the developing brain, mainly before birth but also can occur during or shortly after birth, associated problems may include epilepsy, eating & drinking, visual and hearing impairment and in 50%, learning difficulties. Risk factors are (1) prematurity (<28wks) (2) one of multiple births (3) maternal infections (rubella, chicken Pox, toxoplasmosis) (4) severe jaundice (baby) Diagnosis is made mainly between 6months and 2 years. For mild impairment, life-expectancy can be average but in severely affected individuals, there is a 40% chance of living to the age of 20 years. Refs: Cerebral Palsy, A patientplus article, 06-nov and a patient UK article, Cerebral Palsy, 22-Jan Epidemiology & Health Science Team, NHS Highland 14

15 As part of the Directorate of Public Health & Health Policy of NHS Highland, the Epidemiology & Health Science team provide specialist skills in the areas of: Epidemiology, Evaluation, Literature Review, Health Economics and Database design for Public Health functions Epidemiology and Health Science Team Directorate of Public Health and Health Policy NHS Highland Assynt House Beechwood Park Inverness IV2 3BW Report prepared by: Dr Susan Vaughan and Sara Huc Epidemiology & Health Science Team, NHS Highland