Point of View

Moving child health outcomes forward

Correspondence to: Elizabeth Waters, Co-ordinator, Child Public Health Unit, Centre for Community Child Health and Ambulatory Paediatrics, Department of Paediatrics, University of Melbourne, Royal Children’s Hospital, Flemington Road, Parkville, Victoria 3052. Fax: (03) 9345 5900; e-mail: waterse @cryptic.rch.unimelb.edu.au

Elizabeth Waters Centre for Community Child Health and Ambulatory Paediatrics, Department of Paediatrics, University of Melbourne, Royal Children ’s Hospital, Victoria

Martin Wright Department of Paediatrics, University of Melbourne, Royal Children’s Hospital, Victoria

he shift in emphasis to health out- comes as a way of evaluating serv- T ices and establishing service expec-

tations is moving at a rapid pace. The ability of contractual arrangements between funders and service providers to provide a mecha- nism for monitoring quality of care and the achievement of articulated outcomes is vari- able. This is of particular concern where ad- equate valid, reliable and responsive outcome indicators are not available for some service sectors, particularly in community-based child health services.

Moving at an equally rapid pace is the em- phasis on funding programs and interven- tions that have been shown to be effective and efficient. This approach is particularly difficult when there is inadequate available evidence or where the nature of interventions is not sympathetic to performing randomised control trials.

Changing child health patterns

Within the past generation in developed countries there have been many dramatic re- ductions in infant mortality, childhood infec- tious diseases and nutritional deficiency syn- dromes.’ An increasing awareness has emerged of the impact of chronic illnesses, childhood injury, behavioural problems, de- velopmental delay, child abuse and mental health concerns. This pattern of conditions was characterised in 1975 by Haggerty as the ‘new morbidity’.2 They have attracted in- creasing societal interest and resource con- sumption as a result of the raised expecta- tions of families and communities, societal stresses and social inequalities, and improved surveillance and detection methods. Addi- tionally, the relatively rare and serious child- hood genetic or congenital anomalies) are receiving more attention as awareness of so-

cial and intergenerational health concerns evolves, an increasing number of genetic markers or risk factors are identified, and use of community family genetic screening pro- grams increases4

Many of the existing and emerging child health issues are directly influenced by changing familial, social, physical and envi- ronmental conditions. These multifactoral influences make it difficult to identify chil- dren or population groups most likely to de- velop health-related problems.

Traditional indices of individual and population health such as mortality rates and birth weight are still critical pieces of infor- mation to collect, but have inherent inadequa- cies in their ability to reflect the health and well-being of the majority of children in de- veloped countries.

Current threats to child health

Health policy shifts such as the tendering out of public services pose particular threats to child health. This is due to the paucity of valid outcome measures by which to evalu- ate and compare programs, the move to con- sumer decision-making processes and the lack of politically vocal lobby groups advo- cating for this sector.

For children as consumers, in the context of their families, success depends on reliable information, excellent communication sys- tems between services and consumers, fam- ily interaction and appreciation of the chang- ing needs of children, commitment to unrav- elling the health system maze and sophisti- cated advocacy skills.

The terminology and intent of health out- comes aim to link a health status indicator to a precise resource input or the process of health care i n t e r ~ e n t i o n . ~ , ~ The definition is complicated because attribution of outcomes

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to antecedent determinants is normally a process that requires spe- cific research tailored to the community or the population base where the program or service is delivered,’ a complex and resource inten- sive process. What needs to be prevented is the potential for only services which are able to link and attribute health outcomes clearly to set health program standards and receive resources.

Programs need to focus on outcomes that are important and use- ful for their service, and are relevant and sensitive to children, not just those which at this stage can be readily measured, e.g. hospital admissions and patient satisfaction. For services that are not able to adequately identify and measure attribution, greater reliance is placed on process or output indicators as outcome-proxies.

In some cases, there is evidence to suggest that the outputs are reliable proxy indicators of the eventual outcome, such as with immunisation rates,*,’ but often there is not, as with local area in- jury prevention programs. As well, even if adequate information is available to demonstrate that certain processes lead to some im- proved health outcomes, services would still be unaware of the outcomes and va1ue:s which may be important to the consumer, such as the overall changes in the child’s health or quality of life, or levels of parental confidence.

New instruments, that measure child health, well-being, quality of life and functional status are now receiving due attention.’-’’ They incorporate not only physical but also mental and social di- mensions of health, and reflect positive as well as negative con-

Various instruments for children to report their own perceptions of health and illness are also in development and use as well as investigation into the best means to engage parti~ipation.’~

cepts.‘0J

Benefits of an outcome approach

Despite the current confusing economic incentives such as out- put-based or historical funding, the principle of an outcomes orien- tation has many benefits for children. Services are beginning to focus on long term outcomes as well as more easily measured short and medium-term outcomes. The health outcomes debate has also emphasised that:

many effective approaches to child health problems cut across professional disciplines and sectors, and require attention to health, education, social services, justice, employment, income distribution, housing and child care, e.g. child abuse, injury pre- vention and learning problems; wide disparities in health status among various population groups can be reduced by improving the nature, quality, availability, and access to health services and health information; and many unrealised opportunities for preventive intervention occur during pregnancy, early childhood and adole~cence.’~

How children are different to adults and what this means for outcome measurement

In an outcome measurement context, children differ from adults in at least three important ways.

First, children continuously demonstrate change in their func- tional capacity as they develop and grow, so the method for assess- ing the effect a particular intervention has on a child’s physical, emotional, or cognitive developmental status must incorporate a

mechanism for identifying change outside the normal range. Second, children’s dependency on adults raises measurement

challenges related to the attribution of outcomes to the health serv- ices versus the intervening effects of adult behaviour.

Third, children have a differing pattern of morbidity to those of adults, i.e. type, intensity and prevalence of health conditions3 Of most relevance are physical, emotional and cognitive developmen- tal changes. These factors influence the types of problems children present to health services with, how they present, the impact the problem will have, how it can best be addressed and how a service can measure attribution.

Children may have problems due to abnormalities of the devel- opment trajectory, such as language delay or impaired growth. Al- ternatively, health problems may be influenced by the developmental stage of the child, not necessarily as an abnormality of the develop- mental process. For example, the way suspected child abuse or be- havioural problems are detected and managed in a child of 8 years will differ to a child of 18 months. Classical patterns of symptoms and communication with the child will vary at different develop- mental stages.

A critical component for outcome measurement and service evaluation is the ability of children to act as reporters of their health. It will generally closely match the age of the child and their devel- opmental expectations, but may vary in the presence of learning difficulties or emotional problems. Not only is i t influenced by the child’s ability to read and write or to understand a question, but also by the developmental stage of their cognitive processes. A 6- year-old may be able to respond to the question, “do you have tlif- ficulty sleeping?’ but may interpret i t differently to a 16-year-old.

Some of these measurement difficulties relate to methods of com- munication and can be solved by using pictorial formats in young children, e.g. pain scales,I6 but issues surrounding cognitive ability are less easily solved. External criteria such as the perceptions and observations of parents may need to be used, or it may mean that certain information collectable from adults cannot be collected from children. Information relating to the levels of consumer satisfac- tion and perception of individual health care outcomes may not be as informative in a young child as in an adolescent or an adult, despite the fact that self-report health data can be gathered from older and younger persons without significant decrement in data quality.”

Nonetheless, children are inextricably linked to the families and the environment in which they are growing more so than adults, and may not be able to be considered as an independent consumer unit until the adolescent years.

Valid and reliable measurement tools for children

Generic health and well-being or quality of life instruments for children have been developed only relatively recently. This is partly because child health problems in most developed countries are not considered as high a priority as the adult and ageing populations.

The proportion of children is decreasing across the populations, there is a lower prevalence of costly acute-health problems in the childhood age-group, and therefore a lower financial burden on the core health system. As a result, because the total pool of children with specific health problems is small it has been difficult to obtain sufficient numbers to develop and evaluate discriminatory instru-

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Waters and Wright Point of View

ments, and the pressure to develop them have not been to the same extent as the adult field.’O

On the other hand, there is greater complexity required because instrument designers need to consider the effect of development on the nature of child health problems, how they present and who the suitable respondent to the instrument will be - whether parent, child or proxy sources such as extended family members or care-givers. The interpretation of results needs to allow for differences meas- ured over time attributable to the reporter’s characteristics, the com- ponent attributable to developmental changes in the child, and the different situations they might be observed in, e.g. home, school, playground. lo These different settings will influence how health- related concerns are exposed, and how they impact upon the child’s functional status and well-being. Allergic rhinitis may have great- est impact on classroom function at school, for example.

An approach to child health outcomes in Australia

We have identified the need for a three-armed approach that in- corporates research-driven development of valid child health out- come measures, intensive developmental efforts with individual programs and professional groups, and a national and international commitment to develop and share child health outcome knowledge and expertise.

Initiatives are needed to further develop and validate scientifi- cally sound measures. The process is resource and time intensive and as a result often works best through international collabora- tions and cultural adaptations.

Obtaining valid and reliable information can be hampered when instruments, measures and processes are borrowed from other health systems such as the United Kingdom, the United States or Canada, without considering the cultural, social and environmentally sensi- tive differences that exist across Australia and within local areas.

Research projects which trial existing measures in the Austral- ian context, evaluate their utility and reliability, validate them and provide normative data are an important contribution to this area. These endeavours will obtain an understanding of the validity of the core information from the use of these instruments, and the settings in which they are valid and reliable, such as cuIturaVage groupings.

Furthermore, there needs to be a commitment by services and those working with them to identify realistic and useful outcomes for themselves and their consumers.

Each service may provide a slightly different intervention and this will impact on the usefulness of broadly specified outcome indicators. It is important that indicators of outcomes are those which have been identified to be relevant by the majority of those persons or organisations involved with the intervention or case. This may include the child, family, case workers, program managers, f u n d e d purchasers and relevant health policy-makers. Each level will have different values and expectations of outcomes that need to be iden- tified and considered for each stage of the intervention or series of interventions.

Many services have varied levels of understanding of outcome concepts and changes in health policy directions, differing training and experiences in ‘measuring’ health and well-being, and varying pressures to provide information to support the efficacy and effi- ciency of their program. For these services, specifications of out-

comes and ability to measure them is expected by state and federal funding sources. The identification of service-specific outcomes needs to be informed by research, but incorporated into the service evaluation framework that acknowledges their time restrictions, interest and available resources.

The third arm is at a macro-level. Individual programs need to be able to draw upon the findings of others.

Walker and Gortmaker stated in 1984 that it was often difficult to generate convincing evidence for the effectiveness and efficacy of health programs, often because of the difficulties of implement- ing powerful research designs and because of the relatively small effects of many programs, even those including random assignment to treatment. l 5

Too often, outcomes are measured on populations that are too small to show statistically significant differences. There should be more attempt to monitor the process of the actual program, and ensure quality as well as outcomes. The inability to show success- ful outcomes is often due to problems of adequately measuring outcomes.I5 There is a danger of abandoning a program because a large population study does not show successful outcomes when, in fact, i t may be due to the quality of the program.*Additionally, if the goals of a program are so vague that no appropriate target group or outcome measure can be specified, then the chances of demon- strating a significant program effect are extremely remote.15 As a general principle, the use of health outcomes to measure the effects of services at a community or local can only occasionally be help- ful.8

The new challenges for child health involve a rethink of models available for the delivery of health care interventions, reorientation of the economic incentives for health care practices, changes in the ways that health professionals are selected and trained, and better ways of influencing medical practice and public health through find- ings from biomedical, behavioural, and social sciences3 It will also involve a multi-sectoral approach, improved education programs for all those who have contact with children and their families (not just those in the traditional ‘health’ sector), continued research into the efficacy and outcomes of screening and surveillance activities, and innovative ways of using information technology for efficient and ethical child health information management.

The ways in which Australian child health services collect, man- age and use information is overdue for a change. Increased use of information technology, combined with an increasing awareness for the need to transfer information accurately and in a timely way, has led to a window of opportunity for improvements in child health outcome measurement and monitoring. For this to advance, it re- quires adherence and commitment to a national health information process’* that, to date, has little to offer the area of child health in the community.

Conclusion Child health poses unique challenges for health outcome direc-

tions. We have outlined an approach that recognises the role of all those involved in child health, but requires a particular focus by those from the health outcomes’ movement, and those planning and working in child health services. The time has come for child health to be recognised as a unique area of focus for health outcome and evidence-based health care decisions.

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Point of View

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