Programs
What to expect from the Case Management team
When a healthcare provider receives out-of-range newborn screening results, they will be notified in a timely manner and receive clear guidance on next steps. It is the provider’s responsibility to communicate results to the family and coordinate additional testing if necessary. Additionally, the provider should refer the baby to the appropriate specialist for further evaluation and treatment as needed. Early intervention is critical to ensuring the best possible outcomes for the baby.
What to do next
Algorithm for Confirmation Testing (ACT) sheets serve as valuable tools in the context of newborn screening. They are concise and standardized documents that outline step-by-step protocols for healthcare providers when interpreting and confirming abnormal or out-of-range newborn screening results. ACT sheets provide clear guidance on the specific actions to take, which may include further testing, consultation with specialists, and/or follow-up procedures. These sheets were developed and are frequently reviewed to streamline the decision-making process, ensuring that healthcare providers follow consistent and evidence-based pathways when there is an abnormal or out-of-range result.
Communicating out-of-range results to families; including talking points, condition information and resources for families
When discussing a child’s out-of-range newborn screening results with families, it’s crucial for healthcare providers to approach the conversation with empathy and clarity. Here’s a suggested way to handle this:
- Begin the conversation with empathy and understanding, acknowledging the concerns and anxieties parents may be feeling.
- Use straightforward and easily understandable language to explain the screening results. Emphasize that these results are not a definitive diagnosis but rather a precautionary step.
- Reassure the parents that early detection is essential for potential intervention and that all conditions screened for are treatable with the right care and support.
- Collaborate with the family to determine the next steps. This may involve additional testing or a referral to a specialist clinic, depending on the specific situation.
- Provide families with access to resources, including information sheets related to the particular condition being screened for. This will help them better understand the situation and their options.
- Acknowledge that this can be a confusing and emotionally challenging time for families. Be prepared to address their questions and concerns to the best of your ability during the appointment.
- Ensure families have the necessary contact information to follow up with the Case Management team or specialist clinic for ongoing support and information.