From: Pain points in parents’ interactions with newborn screening systems: a qualitative study
Recommendation | |
---|---|
– In putatively positive cases where follow-up is required, the appropriate primary care clinician should contact parents with accurate and culturally sensitive information, and take steps to coordinate timely specialist care | |
– For conditions where early onset of severe symptoms are likely, contact with parents should be immediate (and preferably via telephone) | |
– Communication with parents should be rapid, confidential, and shared with all stakeholders | |
– Relevant information should be available to all stakeholders, including parents and clinicians at the point of care | |
– Systems should allow (to the greatest extent possible) linkage or integration with other child health systems | |
– NBS-related education should be provided to parents in the third trimester of pregnancy | |
– Information regarding appropriate follow-up should be provided by a clinician who has an established relationship with the parents | |
– Educational material should be adequately detailed, culturally sensitive, and linguistically appropriate | |
– After an initial positive result, education should be provided to explain why further testing is necessary, the probability of an initial false positive result, the process & timeframe for confirming results, whether or not intervention is immediately required prior to a confirmatory result, and additional basic information regarding the condition |