Child Health Record Literature Review

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1 Child Health Record Literature Review

2 Prepared for: The Victorian Government Department of Education and Early Childhood Development Prepared by: Centre for Community Child Health Murdoch Childrens Research Institute as represented by the ABN Disclaimer Pricewaterhouse Coopers (PwC) work did not constitute an audit in accordance with Australian Auditing Standards and consequently no assurance or audit opinion is expressed. Except where otherwise stated, PwC have not subjected the financial or other information contained in this report to checking or verification procedures. Accordingly, PwC assume no responsibility and make no representations with respect to the accuracy or completeness of the information in this report, except where otherwise stated. This report is provided solely for use by the Department of Education and Early Childhood Development for the purpose set out in the contract agreement dated 22 June You may not show or provide this report to any third party without PwC prior written consent. PwC accept no liability or responsibility to any third party in connection with PwC services and this report. Child Health Record Literature Review 2

3 Table of Contents 1. Introduction Background to the literature review Scope and aims of the literature review Literature review process 3 2. General overview Concepts Child health and development Child health and development monitoring programs Child health records History and current use of parent-held child health records Whole populations Use in victoria and australia Individual-level factors affecting current use of chrs Children with special needs General evidence regarding child health records Whole populations Children with special needs Practical issues Specific purposes of parent-held child health records Meeting children s needs Record of child s health information Screening Surveillance Meeting parents needs Education and health promotion Parental engagement Meeting the needs of health systems Linking child health records Across settings Across time Shared care Public health data collection and linkage Existing child health record models Content Medium Delivery Conclusions References 23 Child Health Record Literature Review

4 1. Introduction 1.1. Background to the literature review The Victorian Child Health Record (CHR) is currently being reviewed to meet the changing needs of parents, primary health providers and other stakeholders. The Victorian CHR was last reviewed in 2004, and some other Australian states have also recently reviewed their CHRs, which are similar to the Victorian record. The NSW CHR was reviewed in 2007 (NSW Health, 2007), the South Australian CHR was reviewed in 2009 (SA Dept of Health, 2009), and the Queensland CHR is currently under review (QLD Health, 2010). The changes in the Queensland CHR follow input from parents and health professionals to make a clear distinction between each section and the incorporation of suggestions for caring for babies and children (QLD Health, 2010). Child growth and development monitoring programs (with their accompanying CHRs) are conducted in many countries (Bjerkeli et al. 2006), but not all. Changes in the content, delivery and timing of both monitoring programs and CHRs continue as a result of continuing research and evaluation to identify the most effective practices, increasing and changing needs of the population, and in some situations, evolving technology by means of computerisation of health records. A small pool of literature exists evaluating these changes and aiming to identify best practice (e.g. reviews have recently been conducted in NSW & the UK) (Stacy 2008 & NSW Health 2007). Recent local and international literature may describe how CHRs are currently used (e.g. usage rates and patterns) to confirm the validity of using such records and inform how well the record meets the needs for child, parent and health system users. Literature may also identify practices and innovations in other jurisdictions that present future opportunities to improve the Victorian CHR. Child Health Record Literature Review 2

5 1.2. Scope and aims of the literature review Scope The scope of this literature review includes the identification of current CHR practice within Victoria, other Australian jurisdictions and internationally; critique of the evidence regarding how CHRs meet their objectives; identification of current evidence for best practice of the CHR for each user group and the evaluation of existing CHR models. While the scope of this review is limited to CHR, data regarding CHR in combination with child growth and development monitoring programs, or broader health promotion programs are reviewed where relevant. This is due to a general absence of literature discussing CHR independently from monitoring and broader health programs. Aims The overarching aim of the literature review is to inform the current review of the CHR. Specific aims are: (i) (ii Describe the history of the CHR Provide general evidence regarding the use of CHR (iii) Describe specific purposes of the CHR for children, parents and the health system and evaluate how well the record meets these purposes, and (iv) Describe existing CHR models Literature review process Relevant literature was initially identified by searching the Pubmed, Medline, PsychInfo, CINAHL, Cochrane and Current Controlled Trials databases, and relevant government publications during June The primary search terms were child health record, parent held child health record, personal health record and personal child health record. Additional literature was sought through additional searches or retrieving literature cited in papers already sourced, as necessary. Child Health Record Literature Review 3

6 2. General Overview This review begins with an overview of the history and current practice of CHRs and general evidence for benefit of using CHRs. The next section critiques the CHR in meeting the needs of children, parents and the health system. The third section of this review summarises the existing models for CHR. Conclusions are drawn at the end of this literature review. Terminology and definitions used in this literature review are summarised in Table 1. Table 1: Terminology and definitions Definitions and terminology Child health record (CHR): Parent-held record in which the key growth, development and health information relating to a child between birth and early-mid childhood is summarised. Also referred to as parent-held child health or medical records; personal child health or medical records; or personal health records. Electronic Health Record (EHR)/ Electronic Medical Record (EMR): An electronic file in a system specifically designed to support clinicians/parents by providing easy access to health data, alerts, reminders, clinical decision support tools, links to medical knowledge and other aids. Such records may be stored on the internet or portable computer drives. Growth monitoring: Routine measurements (usually height/length, weight, circumference) conducted to detect abnormal growth, followed by further investigation or intervention when abnormal growth is detected (Garner et al. 2000). Health professional/clinician: In this literature review, health professional and clinician are umbrella terms referring to any professional providing health care (including community nurses; general practitioners; secondary and tertiary health providers; etc.). Health promotion: Health education, interventions and support at a population level which is conducive to individuals maintaining or improving their current health status. Maternal and Child Health (MCH) service: The Maternal and Child Health Service is a free, universal primary health service for all Victorian families with children from birth to school age. The service is provided in partnership with the Municipal Association of Victoria, local government and the Department of Education and Early Childhood Development and aims to promote healthy outcomes for children and their families. The service provides a comprehensive and focused approach for the promotion, prevention, early detection, and intervention of the physical, emotional or social factors affecting young children and their families in contemporary communities. Parent: In this literature review, the term parent refers to a child s primary care giver, regardless of biological relationship. Parent Evaluation of Development Status (PEDS): PEDS is an evidence based developmental screening tool, used as an initial screen to detect and address developmental and behavioural problems in children aged 0 6 years. This 10- item questionnaire was developed based on a theory that parents are experts about their own child and is used by MCHN to begin a conversation that elicits parent s concerns. Personal health records: Repository of information from multiple people (including the individual, parents/guardians, clinicians, allied health professionals) regarding the health of an individual that is controlled by the individual or their guardians (Council on Clinical Information Technology 2009). Revised Key Ages and Stages (KAS) Service Activity Framework: Revised Key Ages and Stages (KAS) service activity framework introduces a new approach to the ten KAS consultations provided to parents and children by the universal Maternal and Child Health Service. The new framework sets out new evidence based activities for each of the ten age and stage consultations with additional emphasis on health promotion across a range of domains that address both maternal and child health and wellbeing. The revised KAS framework was rolled out state-wide in Surveillance: Ongoing and systematic measurement and analysis of indices of childhood health, growth and development, with the aim of detecting when individuals deviate from normal trajectories (Stone 1990 in Centre for Community Child Health 2002). Screening: tests performed on all (or as many as practicable) members of a population (i.e. including those showing no symptoms of the problem being screened for) with the aim of identifying those at risk of the problem, referring these people for further investigation, and if relevant, initiating early diagnosis and treatment. Child Health Record Literature Review 4

7 2.1. Concepts Child health and development The early years of a child s life are an important developmental period. Growth and development during this period has consequences for the remainder of the child s life and wellbeing throughout their life (Wake et al. 2007). Within Australia, childhood mortality rates are low and most children progress well throughout this developmental period, however there remain a number of conditions with increasing or stable prevalence that are potentially concerning. Such conditions include mental health disorders, asthma and allergy, obesity, diabetes, neurological problems and learning difficulties (Stanley et al in Wake 2007) Child health and development monitoring programs Early childhood growth, development and health monitoring is widely accepted and considered an important indicator of future health outcomes (Panpanich et al. 2000). In developed countries, child growth and development monitoring programs are typically delivered by nurses at community clinics and include the routine measurement of height (or length) and weight, screening tests and discussions with parents to ascertain the achievement and timing of key developmental milestones, and parental education regarding child development, health, illness and safety. Immunisation schedules are often also included in these programs. Monitoring a child s early growth and development for comparison against population reference values facilitates the identification of abnormal trajectories, which could indicate failure to thrive and early symptoms or indicators of diagnoses. Early professional intervention may correct the problem (e.g. resolve feeding problems) or allow early treatment to prevent exposure or improve quality of life (e.g. hip problem). In Victoria, all families with young children can benefit from information, advice and support relevant to their circumstances and their child s individual development. The Maternal Child Health Service delivers a free state-wide universally accessible service for all families with children aged from birth to school age. The Maternal and Child Health Service is funded jointly by the Department of Education and Early Childhood Development and local government. The service provides a comprehensive and focused approach for the promotion, prevention, early detection, and intervention of the physical, emotional or social factors affecting young children and their families in contemporary communities. The MCH Service provides a schedule of contact and activities for all families through the Key Ages and Stages Service Activity Framework. This includes ten key ages and stages (KAS) consultations, offered as a home visit, 2 weeks, 4 weeks, 8 weeks, 4 months, 8 months, 12 months, 18 months, 2 years and 3.5 years consultations. These consultations provide a schedule of contact and activities for all families, with an emphasis on prevention, promotion, early detection and intervention for health and wellbeing. Child Health Record Literature Review 5

8 The Maternal and Child Health Service provides a universal platform that can: help to identify children and families who require further assessment, intervention referral and/or support bring families together, foster social networks, support playgroups and strengthen local community connections deliver other service and supports, such as family support services and immunisation programs. Additional consultations and a range of other activities, including groups are available for those families who require further support via a flexible funding model Child health records A CHR is a parent-held record of information regarding a child s development and health, recorded by multiple sources (e.g. individual, family, guardians, hospitals, physicians and other healthcare professionals). The CHR serves as a record of child birth details, growth and development (e.g. routine height/length and weight measures at well-child checks, parent record for developmental milestones such as first smile), screening results (e.g. hearing tests), vaccination records and/or major illnesses throughout childhood. Community nurses, general practitioners, specialist clinicians and other health professionals are encouraged to record information in the CHR. Parents are also encouraged to record information in the CHR between health appointments. The parent-held CHR is not intended to replace clinicians medical records but is instead a source of information for parents which is presented in manner appropriate to this audience. The main functions of CHRs in Australia are: (i) To record a child s developmental and medical history (ii) Be a communication tool between health professionals (iii) Improve parent knowledge of childhood health and illness (iv) Engage parents for health promotion and improve their satisfaction/ confidence with relations with health professionals (v) Improve health service utilisation (Bailey et al. 1993). The overarching aim of developing the CHR in Australia was to provide a structure to enhance family based monitoring and parent participation, and highlight the important milestones in a child s life, with the objective of improving child health outcomes (Saffin et al. 1991). Child Health Record Literature Review 6

9 2.2. History and current use of parent-held Child Health Records Whole populations Child Health Records are used extensively across the world, and in some locations have been in use since the 1970s (Bailey et al. 1993; Cormack et al. 1998; Hampshire et al. 2004; Bjerkeli et al. 2006). The records are currently used in some European countries (including but not limited to the United Kingdom, Sweden, Portugal Greece, France), some states in the US (including Colorado, Kansas), Canada, Japan, Australia and New Zealand (Shonkoff 2003; Vincelet et al. 2003; Bhuiyan. 2007; Theodosiou 2007; Rourke et al. 2009) Use in Victoria and Australia Child Health Records were first introduced in Australia in 1981 when South Australia distributed CHRs to parents of all newborns (Jeffs et al. 1993). The National Health and Medical Research Council (NHMRC) endorsed the development of a uniform, Australian-wide personal child health record to be rolled out by 1988 (Jeffs et al. 1993). However this was not achieved, and subsequently individual states introduced CHRs (see Table 2, page 7) (Liaw 1998). By the mid 1990 s, CHRs were in use in all Australian states and territories, and had similar core components. However, despite ongoing attempts at consistency, there were slight differences between the CHRs issued in each Australian jurisdiction (Jeffs et al. 1993). Data regarding current usage rates of CHRs in Victoria are not available, however there are indications that Australian parents surveyed over time were likely to keep the record in their possession during their child s early life. Jeffs et al. (1994) found 93% of parents in New South Wales reported retaining the CHR and 78% were able to locate and produce it on request. Retention rates declined from 95% when the child was aged less than 1 year to 89% when the child was 4 years old. A later survey of South Australian parents of infants reported that at least 71% were able to produce the CHR (Liaw 1998). Table 2 (page 7) summarises historical and current practice of CHRs and child growth and development monitoring programs in Australian states and territories and selected international countries. The exact content and schedule of the wellchild programs and CHRs varies between Australian states and territories, however, in general, well-child programs offer free check-ups at a local clinic, and can also refer families to appropriate support services, for example parenting courses or specialist services. Information on monitoring programs and vaccination schedules are included in the table as the CHR often serves as a record of these programs. Child Health Record Literature Review 7

10 Table 2: Comparison of Australian and Selected International Child Health Records and Monitoring Programs Australia Country/ State Victoria New South Wales Queensland Western Australia Australian Capital Territory South Australia Northern Territory Terminology Child Health Record/ The Blue Book Parent Health Record (PHR)/ The Blue Book / My First Health Record Infant Personal Health Record Child Health Record Personal Health Record Book/ PHR Blue Book My Health Record Child Health Records Tasmania Parent Health Record Other countries Date of Implementation of the First CHR Paper/ Electronic Recommended Child Health Surveillance Schedule early 1990s Paper Following discharge from hospital (home visit) and at the ages of 2 weeks, 4 weeks,8 weeks, 4 months, 6-8 months, 12 months, 18 months, 2 years and 3.5 years 1988 Paper Birth, 1-4 weeks, 6-8 weeks, 6 months, 12 months, 18 months, 2 years, 3 years and 4 years early 1990s Paper 0-4 weeks ( GP within 5-10 days old if baby is discharged from hospital at less than 72 hrs old), 2 months, 4 months, 6 months, 12 months, 18 months and older or as recommended by your health care professional 1989 Paper With GP within 5-10 days old if baby is discharged from hospital at less than 72 hrs old. An initial assessment with a community health nurse or GP between discharge from hospital at 2 weeks and at 6 weeks, 7 to 9 months, 18 months and older or as recommended by your health care professional 1988 Paper Birth, 1-4 weeks, 6-8 weeks, 6 months, 12 months, 18 months, 2 years, 3 years and 4 years 1981 Paper 1-4 weeks, 6-8 weeks, 6-9 months, months, 3 years and 4 years early1990s Paper/ Electronic? Birth, 6 weeks, 6 months, 8-9 months (Hearing Screening), 18 months and 3 years Mid 1990s Paper Birth, 1-2 weeks, 6-8 weeks, 6 months, 18 months, 3.5 yrs Vaccination Schedule 2 months: Diphtheria, Tetanus, Whooping Cough (acellular pertussis) Poliomyelitis, Haemophilus influenzae Type b (Hib) and Hepatitis B1, Pneumococcal2, Rotavirus3 4 months: Diphtheria, Tetanus, Whooping Cough (acellular pertussis) Poliomyelitis, Haemophilus influenzae Type b (Hib) and Hepatitis B1 Pneumococcal2, Rotavirus3 6 months: Diphtheria, Tetanus, Whooping Cough (acellular pertussis), Poliomyelitis, Haemophilus influenzae Type b (Hib) and Hepatitis B1 Pneumococcal2 12 months: Measles, Mumps and Rubella, Haemophilus influenzae Type b (Hib), Meningococcal C 18 months: Varicella-Zoster (chickenpox) 4 4 years: Diphtheria, Tetanus, and Whooping Cough (acellular pertussis) and Poliomyelitis Measles, Mumps and Rubella New Zealand Well Child/ Tamariki Ora Personal Health Record Book 1987 Paper; Moving towards fully electronic Birth, within 24 hours, 5 days, 2-4 weeks, 6 weeks, 3 months, 5 months, 8-10 months, 15 months, months, 3 years and School entrant level. **6 weeks- Diphtheria / Tetanus / Whooping Cough / Polio / Hepatitis B / Haemophilus influenzae type b, Pneumococcal 3 months- Diphtheria / Tetanus / Whooping Cough / Polio / Hepatitis B / Haemophilus influenzae type b, Pneumococcal 5 months- Diphtheria / Tetanus / Whooping Cough / Polio / Hepatitis B / Haemophilus influenzae type b, Pneumococcal 15 months- Haemophilus influenzae type b, Measles / Mumps / Rubella, Pneumococcal 4 years- Diphtheria / Tetanus / Whooping Cough / Polio, Measles / Mumps / Rubella Child Health Record Literature Review 8

11 Country/ State United Kingdom (UK) Canada Terminology Personal Child Health Record (PCHR)/ Red Book (Revised 2009) Child Health Record/ Rourke Baby Record Date of Implementation of the First CHR Paper/ Electronic Recommended Child Health Surveillance Schedule 1983 Paper Up to 1week, 2weeks, 1 month, 2months, 4months, 6months, 9months, 12months, 15months, 18months, 2-3years & 4-5years 1979 Paper Within 1week, 2weeks, 1 month, 2months, 4months, 6months, 9months, 12months, 13months, 15months, 18months, 2-3years & 4-5years * National Australian Standard Immunisation program Schedule adhered by all states ** The National New Zealand Immunisation Schedule Vaccination Schedule 2 months: 1st Diphtheria, Tetanus, Whooping Cough, Haemophilus Influenzae b (HIB), Men C, Polio 3 months: 2nd Diphtheria, Tetanus, Whooping Cough, Haemophilus Influenzae b (HIB), Men C, Polio 4 months: 3rd Diphtheria, Tetanus, Whooping Cough, Haemophilus Influenzae b (HIB), Men C, Polio months: Measles, Mumps, Rubella (1st MMR) 3-5 years: Diphtheria, Tetanus, Whooping Cough, Polio booster, 2nd MMR 2 months: Diphtheria, Tetanus, Pertussis Poliomyelitis, Haemophilus influenzae Type b (Hib), Pneumococcal conjugate vaccine and Menigococcal C conjugate. 4 months: Diphtheria, Tetanus, Pertussis Poliomyelitis, Haemophilus influenzae Type b (Hib), Pneumococcal conjugate vaccine and Menigococcal C conjugate. 6 months: Diphtheria, Tetanus, Pertussis Poliomyelitis, Haemophilus influenzae Type b (Hib), Pneumococcal conjugate vaccine and Menigococcal C conjugate. 12 months: Measles, Mumps and Rubella, Varicella Meningococcal C and Pneumococcal conjugate vaccine 18 months: Diphtheria, Tetanus, Pertussis Poliomyelitis, Haemophilus influenzae Type b (Hib) and Varicalla (if missed at 12months) 4 years: Diphtheria, Tetanus, and Pertussis and Poliomyelitis Measles, Mumps and Rubella (Hepatitis B vaccine: Infancy 3 doses or Pre-teen/teen 2-3 doses) Child Health Record Literature Review 9

12 Individual-level factors affecting current use of CHRs Two British studies investigated which parents were most likely to use the CHR and perceive it to be useful. Collectively the studies found first time mothers more likely to use and find the record useful than those who had already had children, while mother s social class, education or relationship status did not predict her behaviour or opinion regarding the CHR (Cormack et al. 1998; Hampshire et al. 2004). Hampshire et al. also found that teenage mothers were more likely to use the CHR however Cormack et al. found no association between maternal age and perceptions of the CHR Children with special needs Children with special health care needs are defined as: those who have or are at increased risk for a chronic, physical, developmental or emotional condition and who also require health and related services of a type or amount beyond that required by children generally according to USA Federal Maternal and Child Health Bureau (McPherson MA., et al, 1998). A report conducted by the Australian Institute of Health and Welfare in 1998 estimated that approximately 296,400 or 7.6% of children aged between 0-14 years have a disability. Of these 144,300 or 3.7% had a profound core activity restriction or severe disability. The prevalence tended to be lowest in the 0-4 years age group and high among 5-9 year olds, indicating that there is possibly increased identification upon school entry. Given this trend it is important to pinpoint as soon as possible special healthcare needs in children and delineate and implement appropriate interventions to improve children s wellbeing (Department of Families; Welfare 2004). Currently in Victoria, there is no specialised CHR for children with special needs. These children receive the standard CHR however there are some initiatives in the Key Ages and Stages program to identify and monitor children with special needs. One such initiative is the implementation of Parent s Evaluation of Developmental Status (PEDS) as a screen for developmental delay. PEDS is a 10 item questionnaire that asks parents about their child s development. If any concerns are elicited using the PEDS, then a detailed assessment is completed using the BRIGANCE screens. These screens are recognised, validated tools of assessment (Department of Education and Early Childhood Development 2009). They are designed to identify children who may have language, learning or global developmental problems and to identify children who may have academic talent or intellectual giftedness (Department of Education and Early Childhood Development 2009). These screening methods help to identify children with special health care needs and possible disabilities and are an important addition to the program. However, the overall impact of this screening process on improving child quality of life remains unknown. Specialised CHRs for children with special needs have been developed in the USA. These records facilitate clinically relevant information to be incorporated into the CHR. Two examples of specialised CHRs for children with special needs are the American Academy of Paediatrics emergency information form (AAP, 1999) and the American College of Emergency Physicians care notebooks and medical care plans/ assessment forms (National Centre for Medical Home Initiatives, 2008). Child Health Record Literature Review 10

13 2.3. General evidence regarding Child Health Records As previously discussed (section 1.3.3, page 4), the main objectives of using CHRs are to record health and development information; promote parent knowledge, engagement and communication regarding health and health professionals; and to improve health service utilisation. To conclude that the CHR meets these main objectives, using the CHR would result in improved health in the whole population or at least the sub-population screened at risk of poor health outcomes and/or increased health service utilisation, and increased parental knowledge and engagement. The limited literature discussing if CHR use results in these outcomes is reviewed below for both whole populations and children with special needs. No literature evaluating the evidence for CHR use among families with diverse backgrounds was identified in this review Whole populations Health outcomes and health service utilisation Parent held Child Health Records are promoted as an important tool for parents (Bailey et al. 1993; Department of Education and Early Childhood Development 2010), and are supported by professional associations such as the American Academy of Pediatrics (Council on Clinical Information Technology 2009) who recommend that a single CHR is kept for every child. Despite the wide use of the CHR throughout Australia and internationally and the subsequent time and financial costs involved, there is little empirical evidence for or against the effectiveness of CHRs in improving health outcomes in either whole populations or subgroups at elevated risk of poor outcomes. Few high quality studies have been published, and there are no studies in progress that have been registered with the Current Controlled Trials registry (a register of current randomised controlled trials (RCT - the gold standard for assessment) as of July The lack of high quality randomised trials may reflect the fact that CHRs have been rolled out and amended simultaneously for their entire population, curtailing opportunities for randomised trials. A small pool of literature endorsing CHRs to improve health outcomes generally lacks supporting empirical evidence (Nossar 1998). Although there is a lack of empirical evidence regarding the effectiveness of CHRs in improving health outcomes, there is some literature regarding stakeholders perceptions and opinions of CHR effectiveness in improving health outcomes and service use. Only one RCT has investigated how using a CHR impacts on child health and parent outcomes, above and beyond attending well-child visits (Bjerkeli Grøvdal et al. 2006). The trial reported no significant improvements. Upon considering a nation-wide introduction of CHRs in Norway, this randomised controlled trial was conducted to assess if using a CHR (which included educational material) improved healthcare utilisation, parent s ease with talking to health professionals or parent s knowledge of child health information and illness over a 1 year period for children aged between 0 and 5 years (n = 302 parents who had at least 1 previous child). The control group continued to access the existing health surveillance program (scheduled well-child visits with community nurses and vaccination appointments) but did not receive a copy of the records. The intervention group had no significant improvement in healthcare utilisation or parent s comfort or knowledge compared Child Health Record Literature Review 11

14 to the control group. Intervention parents generally supported the use and roll-out of CHRs. However, the Norwegian health authorities deferred the introduction of CHRs on the basis of these findings. There is some cross-sectional evidence that the use of parent-held vaccination records (which are a common component of CHRs) are positively associated with being up to date with recommended vaccination schedules (McElligott et al. 2010). In Western countries, non-compliance with recommended vaccination schedules amongst children is associated with sociodemographic (e.g. low maternal education, low family socio-economic status, non-white ethnicity) and family-level factors (e.g. younger maternal age, large family size and late birth order) (Falagas et al. 2008; Danis et al. 2010). However, after controlling for sociodemographic and family factors, young American children (aged months) with written parent-held vaccination records were significantly more likely to be up to date with scheduled vaccination (according to clinical records held by the vaccine provider) than children without such records (84% vs. 79%, Odds Ratio adjusted for sociodemographic variables = 1.67 (95% CI 1.49 to 1.77) (McElligott et al. 2010). The cross-sectional nature of this study can not confirm the direction of the relationship between vaccination rates and maintaining records; it is very plausible that parents motivated to bring their child to scheduled vaccination appointments are also more motivated to maintain records. Furthermore, these findings may have limited relevance in counties such as Australia where immunisation rates are exceptionally high and closely monitored by a national register (Hull et al. 2009). These findings are consistent with an older Australian study. Richards and Sheridan (1999) analysed immunisation registry data of infants born in Queensland in 1994 who had commenced vaccinations and reported that delays or not receiving the vaccinations recommended by age 12 months was predicted by not keeping CHRs up to date or not bringing the records to vaccination appointments (effect size not given), amongst other reasons. Thus it may be that maintaining vaccination records is a marker and not a cause of high immunisation rates. Parent education, engagement and communication with health professionals Aside from improved health outcomes and health service use, CHR usage has also been promoted to improve parent knowledge, engagement and communication with health professionals (Bailey et al. 1993; Nossar 1998). British (Hampshire et al. 2004) and Australian (Jeffs et al. 1994) surveys found that 88% and 85% parents respectively, had read some or all of the parenting and first aid information within the CHR, which would be expected to improve parent knowledge of child health and development. Furthermore, a survey of CHR use amongst UK mothers of infants aged 0 to 6 months (Cormack et al. 1998) found mothers referred to the CHR to find information about child illness. Cormack reported that 60% of infants had been ill before reaching 6 months of age, and 38% of mothers reported the CHR information about illness was useful. The proportion of mothers who referred to the information within the CHR (32%) when they thought their child was ill, but before seeing a doctor, was equivalent to the proportion who read a baby care book (32%) and higher than those who consulted their husband (22%) or their own mother (24%). Regardless of parents reporting that they read the information in the CHR, this may not be an effective way to educate parents and improve their objective knowledge of child health and development. Bjerkeli s 2006 study found parents given a CHR Child Health Record Literature Review 12

15 and attending well-child check visits did not score higher on a quiz of child health and illness (the answers to which were included in the CHR) than parents who only attended well-child check visits. Only a minority of parents have reported that using the CHR improves their engagement in their child s care or their communication with health professionals. In a survey of British mothers, only 34% of mothers felt the CHR helped them talk to their MCH nurse and 25% felt the record helped them talk to their child s doctor (Hampshire et al. 2004). Similarly, only 31% of Norwegian parents reported that the CHR improve their participation in their child s health care and 39% reported the record had improved their communication with health professionals (Bjerkeli et al. 2006). The randomised trial of Norwegian CHRs found the proportion of parents who experienced difficulty in talking to a health professional was low (less than 20%) and did not differ between the groups with and without a CHR (Bjerkeli et al. 2006). There is surprisingly little empirical evidence for or against the use of CHR in improving health outcomes, health service utilisation or parent education, engagement and communication with health professionals. An exception is that up to date parent-held records are associated with improved compliance to recommended vaccination schedules Children with special needs There is generally a lack of literature assessing how CHRs meet the needs of children with special needs, and no Australian literature was identified. However a British pilot study of an adapted CHR for disabled children may provide insight into how such a record may be designed for use in Australia. The study suggests that CHR supplements given to children with special needs to be focused and relevant to the child s specific diagnosis or problem. In a small trial of a generalised disability CHR supplement for all-type disabled children in Leicestershire, England the additional section was added to the standard CHR (Moore et al. 2000). The supplement included health professionals contact details and appointment times; lists of diagnoses, medication and equipment; and space for parents or professionals to record the child s achievements and future needs. A list of generalised support services for children with a disability was also provided. The study found no change in parents perceptions of their child s health care or the amount of communication between parents and health professionals. The authors concluded that the lack of improvement meant the value of the CHR supplement was limited to being a memory aide. The authors also provided qualitative data that families doubted the record had much influence on plans made for their child and in free text parents asked to be given the record earlier and for pages devoted to specific kinds of disability. Methodological weaknesses included no information on child age or type of disability, and a potential positive bias in reporting high usage of CHR due to only analysing the 53% of participants who returned their CHR and supplement at the end of the study. Ideally therefore these study finding should be replicated, and future research could consider pilot CHR supplements which are more specific to particular diagnoses or problems. Child Health Record Literature Review 13

16 Practical issues Underlying most of the reasons of keeping a CHR (see section 1.3.3, page 5) is an assumption that the data within the record is accurate and reasonably complete. A small number of studies have investigated these aspects of the CHR data in Western Europe. No literature regarding the quality of Australian CHR data was identified in this review, however a survey of Victorian MCH nurses provided information about the quality of the techniques and instruments used to measure infants and children. The literature relating to CHR data accuracy is summarised below and literature relating to CHR data completeness is discussed in section (page 18) below. A 2007 survey of Victorian MCH nurses (n = 175) found that most (70%) had received basic anthropometric training, although in some cases it was not recent and more than 20% reported having no such training (Wake et al. 2007). Most weight scales (64%) had been calibrated in the previous year, however few height measures (e.g. stadiometers, pull-down measuring tape) had been recently calibrated (Wake et al. 2007). A research study measuring infant s height and weight using gold standard procedures used the opportunity to assess how accurately this anthropometric data was recorded in CHRs. A subgroup of infants had their height and weight recorded in both their CHR and by the study researchers within a 2 month period (n = 1051 British infants aged 4-43 months in ) (Howe et al. 2009). The growth data from both sources was adjusted for child age (by converting height and weight into standard deviation scores using a standard growth reference). Compared to the research study s gold standard procedures, height and weight data recorded in the CHRs was generally precise, particularly in older infants. Weight was recorded in CHR with greater accuracy than height (or length), reflecting the difficulty of getting infants to stretch out flat (average difference compared to the research study data was <0.1 kgs and <1 cm). Accuracy of CHR weight and height data improved with child age (95% CI of weight measurement was 12% of the mean weight at age 4 months reducing to 7-8% for subsequent ages, similar pattern in weight data). This study provided reassurance that British CHR data recorded in the 1990s was generally precise, however the accuracy of current Australian CHR data has not been assessed in a similar manner. Authors of a recent French study into the accuracy of neonatal data recorded in the CHR (Troude et al. 2008) concluded that missing data in the record may not be random, and that there is some evidence that socially sensitive data may be omitted or recorded incorrectly in CHRs. The study tested the hypothesis of intentional alteration of socially sensitive data in the CHR (n = 392 mothers of newborns in France, 2006) by comparing the data recorded in maternity hospital medical records and CHRs. The study found that low birth Apgar scores (indicative of poor health) were significantly more likely to be omitted from the CHR (omitted in 38% of CHRs) than normal scores (omitted in 5% of records). Low Apgar scores were also more likely to be incorrectly recorded. Approximately 40% of low Apgar scores were incorrectly recorded as normal, leaving only 21% of low scores accurately recorded in CHRs. No normal Apgar scores were incorrectly recorded as low scores in the CHRs. While the omissions and incorrect recording of low Apgar scores by health professionals may be subconscious, the authors concluded that the study findings supported their hypothesis of a systematic bias against the accurate reporting of socially sensitive data in CHRs. Child Health Record Literature Review 14

17 3. Specific purposes of parentheld Child Health Records Child Health Records have multiple functions that contribute to meeting the needs of children, their parents and health system. The following sections discuss how CHRs contribute to meeting the needs of each of these groups Meeting children s needs Record of child s health information The content and format of CHR facilitates the standardised and concise documentation of key information regarding birth, growth, achievement of key development milestones, personal and family medical history, family demographic information and health professionals contact details (Council on Clinical Information Technology 2009), recorded by both parents and professionals. The record can also include information regarding immunisations, significant illnesses and known allergies. The CHR promotes the child s health needs via aiming to improve health care from clinicians through access to historical information, and from parents by providing access to information regarding their child and standard educational materials about child health and development. The child s broader needs are also promoted through standard educational materials about parenting and sources of help for parents. While the CHR is usually considered a source of information for clinicians and parents, the CHR also gives the child an easily-accessed historical record of their own childhood development, illnesses and vaccinations. This historical information may be useful in retrospect to investigate the onset and trajectory of adolescent and adult health problems, and potential intergenerational transmission of traits to their own children. By its nature, the record accrues an increasing amount of information as the child ages. Therefore it is important to guide users to record key information that is likely to be relevant to others or in the future, and for the record to have a clear and intuitive format so that information is both accurately recorded and efficiently located by others or at a later time. Recording excess amounts of trivial information may be counter-productive to the aims of the CHR Screening The CHR is well-suited to recording the results of screening tests, which by their nature are standardised tests routinely given to whole populations to detect those at risk of the problem being screened for. Examples of problems for which infancy and/ or childhood screening tests are conducted in Victoria and which can be recorded in a CHR include hearing problems, newborn vision difficulties, metabolic or genetic screening and general developmental delay (Department of Education and Early Childhood Development 2009) Surveillance A key component of surveillance (the ongoing and systematic monitoring of a child s health, growth and development over time) is record keeping. The CHR can function as the repository of information recorded by multiple sources, including Maternal and Child Health nurses, general practitioners, clinicians and parents. Child Health Record Literature Review 15

18 Growth percentile charts are a common component of CHRs, and plotting of the child s height, weight and/or Body Mass Index on the charts over time allow users to the CHR to monitor growth over time, in comparison to normal values. Similarly, users can record the timing of numerous developmental achievements and monitor the child s development, again in reference to the average trajectory of children of the same age. The CHR can also be used to record the timing and type of significant childhood illnesses. Collectively, this information recorded in the CHR can facilitate the detection of abnormal growth or development trajectory, and consequently early detection and intervention for any problems. 3.2.Meeting parents needs Education and health promotion It is well accepted that positive parenting is a key determinant in fostering healthy child development (Walton 2006). Postnatal education can provide parents with important information and assist in the transition into parenthood. In developed countries, such education is often provided by nurses, midwives and physicians in hospital or community settings (Campbell et al. 1993). The Victorian CHR contains educational materials that may act as one of numerous sources of information about parenting and child health, illness and development, particularly in the absence of relatives or friends to offer advice. The Victorian CHR also includes contact information for support services which parents can contact if wanting to seek help for their child or themselves Parental engagement Research in Britain has shown that a majority of parents would like to hold records of their child s health and development (Saffin et al. 1991). Parental comments from many focus groups consisted of helpful, convenient, informative and I can keep track of my baby s immunisations and development (Collins R, 2002). Parents felt that the CHR provided immediate information and everything was conveniently complied in a single comprehensive book (Stacy 2008). Many reported the convenience when travelling, whether it is interstate or abroad, it was available wherever and whenever the child is seen. The [universal] sentiment of parents is that the CHR is complete, valuable advice tool which minimises the use of loose leaflets thus reducing the likeliness of misplacement. The major advantage in its use being parents are actively empowered and involved in the child health surveillance programme (Nossar 1998). It encourages partnerships with parents and increases parental knowledge of one s own child and his/her health and development. US research shows that parents reported satisfaction with various aspects of the CHR and this was consistent with results of similar studies internationally which found that parents have high level of satisfaction(collins 2002). Similarly in Queensland Health s child health and safety unit, whilst looking at the range of health promotion information available to parents of children in the 0-8 years age group, found that the CHR was being used as both a recording tool and as a health resources- providing parents with much needed prompts, with pages designated to alert parents and clinicians alike to pin point any maldevelopment of the child. A review of the QLD CHR was carried out in 2005 (QLD, Department of Health 2009) and general recommendations included that of altering the CHR to include more options for parents to use the CHR independently as a recording device, being less prescriptive and more user friendly. The issue that needed to be addressed was making the book less bulky itself so that parents don t feel Child Health Record Literature Review 16

19 overwhelmed by the sheer volume of information presented to them, soon after the birth of their child, and ultimately having troubling making sense of it all (QLD, Department of Health, 2009). Implementation of such suggestions are likely to improve the utilisation of the CHR and therefore improve parental compliance. The ethos behind the record is improved communication, enhanced continuity of care and increased parental understanding of their child s health and development (Walton et al. 2006). A consistent theme throughout the literature is that parents feel snowed under by the bulk of information, much of it conflicting and so dense with text that it becomes a burden to record and isn t utilised to its maximum potential and much if this is consistent with international findings. Parents are so keen to care well for their children and are skilful at sourcing their own information, although it is not always coming from health sources. In these days of commercial enterprise, parenting has become a commodity and health providers need to compete for parental attention. This can only be achieved via continual review and implementation of parental suggestions in the modification of the CHR Meeting the needs of health systems There are two main avenues through which the CHR may benefit the health care system. Firstly, at the level of the family, it may assist clinicians treat their young patient through improved parent knowledge and engagement (see section 1.5.1, page 12), and access to basic information about the child s previous health-related appointments across settings and time. It is possible that these two factors of parent engagement and linked child health records could assist clinicians achieve improved health outcomes (through parents bringing their child to a health professional in situations where this is appropriate) and reduce workload (through easy access to basic information) however these need to be balanced against potential disadvantages and have not been rigorously studied to date. Secondly, at the level of the community, growth and development data collected in individuals CHR has the potential to be collated and used in public health and epidemiological applications to improve prevention, detection, and management of health problems amongst children Linking child health records Victorian parents are advised to bring their child s CHR to appointments with MCH nurses, general practitioners and dentists; and at community health centres, immunisation sessions and hospitals (Department of Education and Early Childhood Development 2007). These health practitioner groups are also educated and encouraged to use the CHR. The aim of providing this advice to parents and professionals is presumably to achieve one of the main aims of the CHR linking child health records across settings and time Across settings A major function of the CHR is to link child health records across settings. Successfully using the CHR for this purpose depends on parents reliably presenting the record and a broad range of health professionals reliably recording information in the record. Current Victorian data on CHR presentation and usage rates is not available but some insight is available from a previous study conducted in NSW in the mid 1990s. This study showed CHR presentation and usage rates differ substantially between different types of health services, and were influenced by a range of factors. Child Health Record Literature Review 17

20 Information was most likely to be recorded in the CHR by a health professional around the time of birth (90% of CHRs had birth weight recorded, 86% had an Apgar score recorded) and at well-child visits (58% of CHRs had growth plotted on percentile charts and 57% had hearing screening results recorded) (Jeffs et al. 1994). Information was less likely to be recorded at hospital emergency department presentations (18% of recent appointments recorded) and least likely at GP appointments (10% of recent appointments recorded) (Jeffs et al. 1994). How often each type of clinician records information, or asks for the CHR is likely to influence if the parents bring the CHR to subsequent appointment (Jeffs et al. 1993; Jeffs et al. 1994). According to health professionals, 96% of parents always or almost always bring the CHR to well-child checks compared to only 26% of parents to GP visits and only 14% of parents to hospital emergency department presentations (Jeffs et al. 1994). That CHRs are most commonly used at MCH visits partially reflects the nature of this universal health care service. Compared to secondary and tertiary health care appointments, universal health care MCH appointments have relatively standardised content, and thus population-wide CHR forms are better suited to recording this routine information than recording more unique and broad ranging content of secondary and tertiary health care appointments. Another possible reason for the high use of CHR in MCH visits is that the lay-out of CHR data mirrors the child age at scheduled MCH appointments. Reasons for the low rates of CHR usage amongst some clinician groups have been explored. A seminal Australian study (n = 574 health professionals in NSW, 1994) found 64% believed the CHR was beneficial to the health care children received however only 53% regularly recorded information in the CHR (Jeffs et al. 1994). This conclusion that a greater proportion of health professional belief the CHR to be valuable than use the record was also found in a later South Australian survey (Liaw 1998). Possible reasons for the discrepancy between perceived value and use may arise from difficulties in using CHRs, including a reluctance to record sensitive information, increased work load due to a duplication of records, difficulty finding the create place to record specific information, parent forgetting to bring it to appointments and incomplete information from other health professionals (n =27 MCH nurses and 28 GPs, UK) (Hampshire 2004) Across time The CHR facilitates the recording of a child s growth, development and health periodically from birth to school-entry age. When used as intended, the CHR can be an easily accessed source of historical health information for the child over time. Furthermore, plotting this information of the centile graphs included in the CHR can provide an indication of the child s growth and development trajectory, and how this relates to average trajectories for children of the same age. An issue to consider when using the Victorian CHR for historical information or tracking trajectories is that less information tends to be recorded in the CHR as the child ages and stops altogether at school entry. Collective evidence suggests that CHR data becomes less complete as the child ages. Maternal and Child Health nurses; the health professionals most likely to record data in the CHR, see the child less frequently as (s)he ages due to the increasing duration between Key Ages and Stages appointments with increasing child age. South Australian parents reported using the CHR less, and that the CHR was less useful as the child aged (Liaw 1998) 73% of parents found the CHR useful when the child was less than 6 months old, compared to 42% when the child was older (age range not specified). Parents in Brisbane, Australia also reported a significant decline in perceived usefulness of the CHR with increasing child age (raw data not presented) (Jeffs et al. 1994). Child Health Record Literature Review 18

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