Table 4:

Challenges and Suggested Future Directions of Study and Patient Care

Challenge	Suggested Intervention/Future Studies
Counseling regarding potential diagnosis, treatment and long-term outcome of definitive therapies is given to families of infants with SCID diagnosed via NBS at a time of high stress.	Providers should consider delivering counseling over several sessions, with visual aids or written/tangible educational materials that have been developed in cooperation with patient representatives or patient advocacy groups. The efficacy of this approach should be monitored to document caregiver perceptions of the counseling received.
Currently there is no direct assessment of caregiver understanding of counseling given.	Caregivers could consider using standardized questions immediately after counseling and at later times to ensure that the intended message was received and understood by the caregiver or patient.
Caregivers and adult SCID patients have not always recognized the need for long term, life-long follow-up and may need guidance where to seek this follow-up.	There is a critical need to maintain long-term care throughout childhood and to develop transition programs with expertise in post-transplant evaluation to improve the ability of patients to transition from pediatric-focused to adult-care focused centers.