Diabetes in Children and Adolescents of the Western Pacific Region of the International Diabetes Federation

Margaret McGill, RN, and Martin Silink, MD, FRACP

In 1994, the Board of Management of the International Diabetes Federation (IDF) approved the establishment of a Consultative Section on Childhood and Adolescent Diabetes. That milestone in the history of the IDF created a platform from which the issues of children and adolescents with diabetes and their families could be addressed globally for the first time. To that end, the Board of Management charged the Consultative Section with the responsibility of identifying the needs of children and adolescents and their families in both developed and developing countries of the world.

Under the leadership of the joint convenors of the Consultative Section, Lorna Mellor and Martin Silink, and with the assistance of section members, a program was developed consisting of a series of events extending throughout the triennium 1994-97.

The major objectives of the program were to:

1. develop a model containing the necessary steps to evaluate and prioritize the needs of children and adolescents with diabetes and their families; and
2. adapt and adopt this model to accommodate the needs of any country or region of the IDF.

For reasons of efficiency and expediency, the Consultative Section piloted its model in the IDF's Western Pacific Region. The region fulfilled the requirement that both developed and developing countries be included in the Section's work. The diverse nature of the region makes it a microcosm of the world, with diversities ranging from countries with enormous populations, such as China and Indonesia, to small countries, such as Fiji and Papua New Guinea, and cultures as different from each other as those of Thailand and Australia.

ISSUES MANAGEMENT TECHNOLOGY AND CRITICAL MATRIX ANALYSIS
An important factor in developing the Section's program was the decision to use the business analytical approach of Issues Management Technology (IMT) and Critical Matrix Analysis (CMA), rather than following a purely medical approach. Underpinning IMT and CMA is the principle that issues are identified in the early stages of their development and action is taken before they present major problems. Failure to do this in a systematic manner often results in crisis management and has been the downfall of many corporations. IMT effectively acts as a bridge between where the organization is now and where it would like to be and is a springboard for meaningful action.

To start the IMT process, an issues analysis is required. Therefore, before attending the Section's first workshop, the group's management consultant asked all delegates to undertake the following work:

1. Prepare a short descriptive document detailing relevant demographic data for their country and the situation regarding childhood and adolescent diabetes, in particular.
2. Read information describing IMT to familiarize themselves with this technique.
3. List of the 10 most critical issues they face over the next 3 years in regard to improving the assessment and treatment of childhood and adolescent diabetes.

A CRITICAL PRIORITY MATRIX
Next, the issues (Table 1) were prioritized incorporating the dimensions of a Priority Matrix (Figure 1).

Each issue was assessed according to its impact on the realization of the participants' vision for the care of children with diabetes and the urgency with which it needed to be addressed. (Figure 1). The matrix outlines the level of urgency of each issue on the y axis and the level of its impact on the x axis. Issues located in the bottom right-hand three boxes are identified for further development, resource allocation, and action. The remainder of the issues became the central focus of intelligence monitoring.

Figure 1. Critical strategic issues: priority matrix.

From this prioritized list of critical issues, an action plan was developed. This action plan included specific steps to be taken to meet the stated objectives and included nomination of those responsible, timelines, and costs.

IMPLEMENTATION OF THE MODEL IN THE WESTERN PACIFIC REGION

Phases of the Model for the Triennium 1994-97
The model was developed using a series of steps to ensure that participants had the opportunity to report their progress to both the Western Pacific Region group and the representatives of the IDF Board of Management at various intervals throughout the triennium. Phases for the triennium consisted of:

• Phase I: Leadership Needs Assessment Workshop, Sydney, Australia, March/April 1996
• Phase II: Country Workshops, 1996
• Phase III: Reporting Session at the IDF Western Pacific Regional Congress, Hong Kong, September 1996.
• Phase IV: Reporting Session at the 16th IDF Congress, Helsinki, Finland, 1997.

Phase I: Leadership Needs Assessment Workshop
The aim of the workshop was to teach delegates, using business management principles, to:

• identify critical issues
• prioritize these issues using a Priority Matrix, and
• use this information to develop an action plan both for individual countries and for the Western Pacific Region

Participants
All 14 IDF member organizations of the Western Pacific Region were approached and invited to send two delegates (six for China) who were significantly involved in the care of children and adolescents with diabetes in their country to the 4-day workshop in Sydney (Table 2). Delegates were selected based also on their ability to influence government policy and rally colleagues to national workshops to address the needs of children in their own country. While the majority of delegates were medical practitioners, this was not exclusively the case, and parents of children with diabetes added a welcome broader dimension to the program. In addition, Dr. Olga Ramos of Argentina attended the workshop as an observer on behalf of the IDF South and Central American Region.

Issues Critical to the Western Pacific Region
Much time was spent on this area, as most delegates in listing their critical issues in fact listed the cause of the issue rather than the issue itself. For example, a common issue listed was "lack of money." However, this by itself is not a critical issue. It is how a lack of money affects children with diabetes that is the critical issue. Therefore, in this situation, the real critical issue may be unavailability of insulin or the lack of appropriately trained staff. By identifying these issues, participants were then better equipped to consider a variety of strategies.

Further, in developing a list of critical issues for their own countries, (described in more detail later in this article), delegates used the same process during the Sydney workshop to develop a series of issues common to the Western Pacific Region. These included:

• Lack of epidemiological data
• Lack of clinical guidelines
• Lack of systematic information on diabetes emergency services for families traveling or relocating in the region
• Lack of pediatric-trained health professionals
• Lack of international representation/advocacy for childhood diabetes
• Lack of national school policies and procedures

Phase II: Individual Country Workshops
After attending the Sydney workshop, all delegates were charged with conducting a similar workshop in their own country using CMA. To their credit, all delegates fulfilled their responsibilities and conducted workshops attended by representatives of government, member organizations, and health professionals. All followed the CMA process and achieved the desired outcome of identifying a prioritized list of critical issues.

Phase III: Reporting at the IDF Western Pacific Regional Meeting
The third phase of the program was a formal reporting session on the progress achieved during the first 6 months.

Issues common to individual countries
For many countries, their local workshop was the first time an activity dedicated to the needs of children and adolescents with diabetes had been held. Overwhelmingly, the factor that has most influenced the care and education of children with diabetes in the Pacific Region is its low incidence in many countries of Asia and the Pacific Islands. For example, the incidence of type 1 diabetes in children younger than 15 years living in Beijing in 1996 was 1.09/100,000/year. As a consequence of this low incidence, it is impractical and not economically justifiable to devote significant resources to childhood diabetes and its fight for a place in the minds of health administrators and service planners.

Moreover, in some countries of the region, although type 2 diabetes is developing at a frighteningly fast rate, clinical services have not kept pace with this growth rate, and even adult services are limited. Childhood services are further complicated by the emergence of type 2 diabetes in young people in many countries of the region. Indeed, in Japan the incidence of type 2 diabetes in adolescents is four times greater than that of type 1 diabetes in the same age-group.

In situations in which health professionals have limited exposure to diabetes in children, this adds to the confusion about management. Therefore, despite their best intentions, health professionals often do not have the necessary experience and resources to support them in providing optimal care and education to children and their families. In some countries, this lack of resources may be as vital as an unavailable or unsustainable supply of insulin or simply no education materials for children and families.

Interestingly, but not surprisingly, despite the varied backgrounds of the participating countries, outcomes of all of the country workshops highlighted the following common issues:

Need for guidelines and standards of care. Pediatricians may only diagnose a child with diabetes once every few years. For example, in Malaysia, which has a population of >7 million children younger than 15 years of age, only 52 new cases of diabetes were diagnosed in 1996, and it is likely that most pediatricians rarely treat children with diabetes. Thus, maintenance of skills and knowledge and the development of protocols to assist in management are extremely difficult, and it is to health professionals' credit in these countries that their dedication and determination ensures that those few children with diabetes receive optimum care.

Indeed, one of the outcomes of the IDF activities that has been of assistance to many health professionals has been the development of Clinical Management Guidelines for Childhood and Adolescent Diabetes (Australian Paediatric Endocrine Group Handbook on Childhood and Adolescent Diabetes, edited by Martin Silink). This document is available to all countries, and permission has been given for translation into other languages. Sharing this important resource has helped put development of guidelines for optimum care of children in the region on the fast track.

Lack of expertise. While pediatricians are most often available to care for children with diabetes in many countries, specially trained multidisciplinary teams, including educators, dietitians, and social workers, are rarely accessible or even in existence. It is also uncommon for nonmedical health professionals to be allocated solely to diabetes. Therefore, in many countries of the region, diabetes medical officers whose time is limited provide education. Paradoxically, in other countries of the region, such as Australia, comprehensive pediatric diabetes education services have been operating for many years.

A major obstacle to care is the failure of hospital administrations to appreciate the seriousness of diabetes and the need for the appointment of permanent personnel to a diabetes team. A frequent complaint is that nursing staff are trained only to be moved by the nursing administration to another area of work. In such cases, it is not possible to progress past a very rudimentary role for diabetes health professionals, and achieving positive health outcomes and developing a comprehensive diabetes service is almost impossible.

Few formalized, internal training programs exist focusing on the care of children with diabetes and their families. However, this problem is being addressed in the region by provision of training scholarships for health professionals from areas where services are not well developed to train in specialist diabetes units in countries that have specialized services. These exchanges are always mutually beneficial.

A survey of the region to determine what educational literature and resources were available revealed that, in countries with a low incidence of childhood diabetes, educational resources are almost nonexistent, and health professionals rely on pharmaceutical company materials, which are usually written for people with type 2 diabetes or adults with type 1 diabetes. Very little of this literature is culturally specific, and much of it is written at a literacy level too high for the general community. One of the many positive outcomes of the IDF activities has been the sharing throughout the region of educational resources that can be modified to suit the special needs of each country.

Psychological issues. Despite the variety of cultures in the Western Pacific Region, the impact of diabetes on the psychological well-being of children and families was common in all countries. Overwhelmingly, parents of children with diabetes have feelings of guilt and blame. Fear of needles is entrenched in many communities. Parents worry about how their children will cope at school and in employment.

Unfortunately, psychological counseling at diagnosis and for ongoing support is rarely available even in the most developed countries. In some situations, nongovernmental organizations take responsibility for arranging support groups for parents and young people with diabetes. This is best exemplified by the Touch Diabetes Support services operating in Singapore.

Social discrimination. In some countries of the region, young people with diabetes are discriminated against in school and employment, and in some cases they are refused admission to certain top universities, despite having the required academic qualifications. Families may hide the fact that their child has diabetes because this may reduce their chances for marriage. Delegates from one country reported that a survey sent to schools trying to identify children with diabetes failed due to a lack of response from parents who feared that this information would be used to discriminate against their child. This type of discrimination carries an enormous psychological burden.

Lack of awareness about childhood diabetes is a contributor to social discrimination, and it was agreed unanimously that the needs of children with diabetes and their families have never been the focus of public awareness campaigns about diabetes.

Lack of epidemiological data. The region faces a lack of accurate data on the incidence and prevalence of diabetes in children. Because of this, diabetes is not perceived to be a problem, and resources are not channeled into childhood diabetes. All countries in the region are keen to develop registries to provide clear data with which government agencies and hospital administrations can be persuaded to act. This is especially important for countries in which there are many other competing priorities and childhood diabetes is perceived as a rare problem.

Economic considerations. A significant economic burden is placed on all families who have a child with diabetes. However, this is lessened in countries in which governments subsidize medical supplies and medicines. Unfortunately, not all governments provide assistance, and where they do not, families bear the full responsibility for buying insulin, syringes, and monitoring equipment. It is not surprising, therefore, that in some instances monitoring of urine or blood glucose is very limited, insulin is used sparingly, and syringes are used repeatedly.

Local cultural/traditional medicine issues. In communities where traditional medicine is an integral part of life, family members, particularly elders, often use traditional medicine when a child is first ill. It is only when children become dangerously ill that they are taken to Western-style medical institutions where a diagnosis of diabetes is made. It is also not uncommon for insulin injections to be replaced by local treatments from time to time, and it is only when children are clearly becoming ill that the insulin regimen is restarted. In addition to causing significant friction within families whose members may have differing views on the effectiveness of traditional medicine, this can lead to disastrous health consequences.

Only the order of priority and solutions to the specific issues differed significantly across the region.

Phase IV: Reporting to the 16th IDF Congress in Helsinki
By the time of this meeting in July 1997, the Consultative Section had been in existence for just over 2 years. At the Helsinki Congress, all member organizations reported activity in the period since gathering in Hong Kong in September 1996 for the Western Pacific Region Congress. A new initiative had been undertaken in all countries.

Evaluation at this meeting showed the model to be effective, resulting in the following initiatives:

• Standards of care documents. As outlined previously, Clinical Management Guidelines for Childhood and Adolescent with Diabetes (Australian Paediatric Endocrine Group Handbook on Childhood and Adolescent Diabetes), developed by Martin Silink, has been used as a basis for developing national guidelines in many countries of the region.
• Data-gathering methodologies. Assistance has been given by Professor Trevor Orchard and his team at the University of Pittsburgh, in Pennsylvania, to countries where registries do not exist or are in very early stages of development to ensure that consistent methodologies are used to allow for regional comparisons of incidence and prevalence data.
• National school policy and procedures. In Australia, members of the Consultative Section and representatives of the three different education departments (governmental, private, and independent) decided unanimously that the education departments should develop a generic document for use in schools. This document was also made available to the families of young people with diabetes and to health professionals. It consisted of four parts: 1) a policy and procedure statement, 2) an emergency information flipchart, 3) an individual student information card, and 4) an emergency poster. New Zealand is modifying this document for its own purposes.
• Formation of a Childhood Diabetes Section within some diabetes associations throughout the region.
• Development of twinning/networking. A major advance in communication within the region has been the linking of all countries via e-mail. This has provided an instant and efficient vehicle for networking, case management, and health professional training.
• A regional directory of camping activities. Professor Kiaichi Kida of Japan has developed a comprehensive manual outlining the availability and type of camping activities held throughout the region. An important component of this manual is the development of standards that must be attained to hold safe, reliable camps for young people with diabetes.
• A regional directory of emergency care facilities for families traveling with a child or adolescent with diabetes. This document has been published and is readily available for families traveling in the region. The leaders of all services in the directory have given their permission to be included, thus facilitating these families' access to urgent and appropriate medical help, if required.

CONCLUSION
CMA provides an invaluable tool for identifying critical issues and a structure from which an action plan can be developed. Application of this model has enabled health professionals in the IDF's Western Pacific Region to identify and prioritize critical issues facing children and adolescents with diabetes and their families in a structured and systematic manner. Moreover, it has brought together health professionals from many different countries and cultures who strive for the same goal: to improve the lives of young people with diabetes and their families.

The Consultative Section is very pleased to announce that this model will now be applied in the IDF Eastern Mediterranean and Middle East Region, starting in September 1999. Others with experience in diabetes in children who are interested in this model should contact the Consultative Section Convenor.

Acknowledgments
The IDF Consultative Section wishes to express its gratitude to Dr. John Gattorna of Andersen Consulting in Australia for his generosity in developing the Issues Management Technology concepts with participants in the program in the Western Pacific Region.

IDF Consultative Section on Childhood and Adolescent Diabetes: Membership 1994-97
Full members

• Mrs. Lorna Mellor: IDF Honorary President (Convenor), Australia
• Prof. Martin Silink: Convenor, Australia
• Prof. Edwin Gale, United Kingdom
• Prof. Kaichi Kida, Japan
• Dr. Zvi Laron, Israel, and Dr. Hans Akerblom, Finland, Presidents of the International Society for Paediatric and Adolescent Diabetes
• Ms. Margaret McGill, Diabetes Education Consultative Section Liaison, Australia

Co-opted members

• Prof. Francois Bonnici, South Africa
• Dr. Jean-Claude Mbanya, Cameroon

Margaret McGill, RN, is manager at the Diabetes Centre of Royal Prince Alfred Hospital in Sydney, Australia. Martin Silink, MD, FRACP, is director at the Ray Williams Institute of Endocrinology at New Children's Hospital in Sydney, Australia.

Guest Editor

Betty P. Brackenridge, MS, RD, CDE

Betty P. Brackenridge, MS, RD, CDE, is Director of Professional Education for Diabetes Management and Training Centers, Inc., in Phoenix, Ariz. Professionals from many countries, including Portugal, Poland, Hungary, Korea, Bulgaria, Thailand, and Russia, have attended the innovative teaching programs that she has conducted in more than 25 countries. She is past-president of the American Association of Diabetes Educators and a past member of the Centers for Disease Control and Prevention's Technical Advisory Committee on Diabetes. She has served on the editorial boards of several publications, including Clinical Diabetes and The Office Nurse, and she is a co-opted consultant to the International Diabetes Federation's Diabetes Education Consultative Section. The "Managing Your Diabetes" patient education system that she developed and edits for Eli Lilly and Company is used in more than 15 countries. The most recent of her many publications is the third edition of her popular book Diabetes 101, an innovative book for insulin-using patients, told in story form. Her other book, Sweet Kids, published by the American Diabetes Association, is a guide to pediatric diabetes nutrition management in the context of family relationships and is required reading for parents at many pediatric diabetes programs.

Return to Issue Contents

Copyright © 1999 American Diabetes Association

Last updated: 8/99
For Technical Issues contact webmaster@diabetes.org