future view

Guidelines for Youth Health Care: how are they developed?

20 December 2016 • 6 min reading time

TNO started developing guidelines for Youth Health Care in 1998. Any new guideline requires intensive preparation. TNO collaborates with various parties on guideline development: the ZonMw research institute, the Dutch Centre for Youth Health (NCJ) and Youth Health Care professionals. “This high-level synergy results in complete and purposeful guidelines that are ready for implementation in the workplace and that are aligned to the realities of professional practice.”

Guidelines are in place to help professionals do their job well. They provide a standard for professional practice, for quality improvement, and for quality assurance in Youth Health Care organizations. These guidelines, which cover the entire breadth of Youth Health Care – from sleep disorders to hip dysplasia, all in the interest of promoting the physical, psychological and social health of babies, children and young people – are developed to the greatest degree possible based on the very latest scientific insights. “These guidelines provide recommendations. A guideline is binding, but reasoned derogations from the recommendations they contain are possible. In the end, each case is unique, and the point is for the healthcare professional to give the best advice in consultation with parents and their children,” explains Maaike Beltman of TNO. 

Gauging needs

Many steps precede the implementation of a new guideline. The entire process begins at the ZonMw research institute, which has established a grant programme for Youth Health Care guidelines at the behest of the Ministry of Public Health. “We use information from the professional field to gauge where new guidelines are needed,” says Mirre Hubers, ZonMw’s programme secretary. “We then consult with the NCJ’s Guidelines Recommendation and Authorization Committee (RAC) on the most suitable priority. We subsequently conduct a bottleneck analysis to identify the issues that the guideline should address, the parties that need to be involved and the standards that the guideline must meet. We then issue a grant call.” 

Submitting a proposal

Relevant parties can submit a grant proposal, though it must be said that there are only a limited number of parties operating in the area of guideline development. “We at TNO often submit proposals for Youth Health Care guidelines, because we have a tremendous amount of expertise and broad experience in developing such guidelines,” says Beltman. ZonMw awards the commission, and provides the winner with preliminary instructions. ZonMw then remains involved throughout the process. “We hold a progress meeting with the guideline developer at the half-way point. Once the final draft is complete, we provide input to the RAC, whose meetings we attend as observers,” says Hubers.

“We will continue to refine the process, which will promote the physical, psychological and social health of babies, children and young people”

Guideline development

Where possible, a draft guideline addresses bottlenecks and needs in professional practice based on scientific research. Should the literature fail to provide sufficient evidence, then a working group (with the support of a broad focus group) will attempt to reach consensus on the most suitable working method to be defined in the guideline. The standard composition of such a working group is two paediatricians, a nurse, a physician assistant and a parent/juvenile. The various relevant professional associations and experts in the guideline-specific field are involved in its development through the working group or focus group. “If TNO receives the commission, then we lead the working group, we conduct the literature search and we write an initial draft of the guideline. Where necessary, we ask experts from the working group or focus group to write parts of the guideline. Subsequently, the working group comments on the draft version. We employ a fixed method for assessing the scientific evidence and for issuing transparent reports. All of this serves as the basis for the guideline, which we then refine with expert opinions and best practices from the field,” Beltman explains. 

Unifying factor

The Dutch Centre for Youth Health Care is responsible for ensuring that the entire process of development, implementation and evaluation takes place coherently. This requires direction, coordination and the appropriate infrastructure. The pivotal actor in all of this is the RAC, in which all professional associations for Youth Health Care (AJN, V&VN, NVDA) and sector organizations (ActiZ, GGD GHOR Netherlands) are represented. “The RAC receives various versions of the guideline during the development process,” says RAC secretary Bronwynn Sterkenburg. “We consult regularly with ZonMw on the content of the guidelines and the required revisions. We are represented as an observer in their Youth Health Care Guidelines programme committee. But we really start to make our presence felt once actual development begins. This process takes about two years. It takes one year to complete the first draft, which is then submitted to the RAC for the first time. We primarily monitor the process and generally do not interfere with the content. We leave that to the representatives of the professional associations and sector organizations. Our primary task is to coordinate the process, to act as a unifying factor.”

“We use information from the professional field to gauge where new guidelines are needed”

Testing and assessment

Once the draft guideline has been developed, it is given to users for testing in order to arrive at a guideline that is workable and ready for implementation. While testing is taking place, other professionals nationwide can request a code which gives them the opportunity to assess and comment on the draft guideline at the NCJ website. The results of the test and the comments are then integrated into the guideline. Following these adjustments and revisions, the final draft goes back to the RAC. The RAC addresses any remaining issues, dots all the i’s and crosses all the t’s, and the guideline is submitted for authorization,” explains Sterkenburg. Once the guideline is authorized, it is published and it appears on the NCJ guidelines website. “But our work doesn’t stop there. We continue to play a role during the implementation programme, which we run in collaboration and with funding from ZonMw. A guideline is meant to be followed, after all,” emphasizes Sterkenburg.

Standards you can build on

Implementation and potential pitfalls are taken into account even during the development phase. Paediatrician Gea Vrieze has been involved in the development of many guidelines and revisions, and she works with these guidelines every day. “Everyone’s input matters when a guideline is being developed. The draft text gets presented multiple times to people in the field who actually work with these guidelines, which means that the final version will be workable and assured of widespread acceptance. Tremendous improvements have been made in the development of guidelines over the past ten to fifteen years. Today’s guidelines provide healthcare providers with reliable guidance. They have been carefully scrutinized and they are the result of scientific research. You really feel that these are standards you can build on,” says Vrieze. Developing and adopting a guideline is just part of the battle. Implementation comes next. “I’ve noticed that it’s getting harder and harder to find time for the implementation phase. There are a great deal of resources available to help get everyone on board, but it remains a tough nut to crack, especially in view of all the changes constantly taking place in the healthcare landscape”, says Vrieze.

Complete and useful

All parties agree that guideline development is a complex but worthwhile process that can only serve to improve Youth Health Care. “I see guideline development as a really special process because of all the different facets and people involved. This high-level synergy results in complete and purposeful guidelines that are ready for implementation in the workplace and that are aligned to the realities of professional practice. Our goal is to ensure that everyone stands behind the final product. In general, you can say that all of the different parties work together in harmony. The challenge can be greater with certain topics due to particular sensitivities or uncertainties,” Beltman explains. “We will continue to refine the process, which will promote the physical, psychological and social health of babies, children and young people,” Hubers concludes.

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