AAP: Group Decisions Benefit Kids With Disabilities

Shared decision-making (SDM) involving patients and physicians to develop treatment plans should always be used for children with disabilities, stated a clinical report from the Academy of Pediatrics.

For children with disabilities and their families, health-related quality-of-life issues can happen at any time and SDM offers clinicians the ability to create collaborative and informed decisions about care, stated Richard C. Adams, MD, FAAP, and colleagues.

"With the increase of knowledge of and functional use of SDM skills, the clinician will become an effective partner in the decision-making process with families, providing family-centered care. The outcome of the process will support the beneficence of the physician, the authority of the family, and the autonomy and well-being of the child," the authors wrote in Pediatrics.

The report specifically suggested the practice for children with acquired and developmental disabilities, intellectual disabilities, neurodevelopmental disabilities, and those in the state foster care system with intellectual or developmental disabilities.

Key components of shared decision-making include ensuring that information is exchanged in both directions, that all parties are aware of treatment options, and that everyone brings their knowledge and values-related priorities equally into the decision-making process.

Adams and colleagues wrote that it is best to begin developing consensus about routine decisions early, so that in the event of a situation that requires significant decisions, a framework has already been established.

They also noted that it is important to include children in these discussions and provide them with age-appropriate information about their condition as this can help them better understand their condition and treatment options, reduce fear, enhance self-confidence and acceptance, and improve collaboration with treatment decisions.

Several "practical steps" that are common to any SDM process include:

• Acknowledge that a decision needs to be made
• Identify salient stakeholders and formulate an equality of partners for the process
• Present, without bias, the spectrum of treatment options reasonably available
• Review risks and benefits of the options being considered
• Present at appropriate level for the child and investigate their understanding
• Identify preferences and priorities of all parties actively involved
• Reach a decision and arrange a revisiting of the decision to ensure closure

The report noted that although research on pediatric SDM is limited, there have been previous studies which focused on the facilitators and barriers to using SDM, as well as the impact of families.

Barriers included patient characteristics, health system constraints, power imbalance in a relationship, language barriers between families and clinicians, attitudinal biases, and knowledge deficits of clinicians, while common facilitators for the use of SDM included provider motivation, positive impact on clinical process, and patient outcomes.

Parental decision-making on behalf of a child may involve influences, including cultural norms, community standards, impact on siblings, previous experiences, and religious faith.

Adams and colleagues called for further research into measures specific to SDM-related constructs, as well as selection of outcomes measures such as child satisfaction and positive medical outcomes.

They also recommended development of better decision-support tools and technologies.

"These tools should support validity in areas of information presentation, values clarification, and the decision deliberation process. Integration of tools into electronic medical records would support easier and more widespread use," they wrote.