If you’re an adult diagnosed with severe combined immunodeficiency (SCID), or a parent or caregiver of a child with SCID, researchers at the University of California San Francisco (UCSF) want your input for the development of a long-term follow-up program designed to aid individuals and families coping with a SCID diagnosis.

The UCSF Needs Assessment Survey of Patients and Families Affected by Severe Combined Immunodeficiency is open to anyone in the United States living with a SCID diagnosis and takes about 20 minutes to complete.

The anonymous survey begins by asking for biographical information about diagnosis, treatment, education, income, and employment, and leads into several other areas including:

• Information support needs on topics such as genetic counseling/family planning, frequency of follow-up visits, complications, and how parents or caregivers can talk about SCID with their child.

• SCID research needs inquiring about what type of research is sought, trusted sources, the difficulty of understanding the research, and research that should take place in the future.

• Emotional support on topics such as mental health services, dealing with uncertainty, managing changes in relationships, and finding opportunities to connect with other families.

• Financial aspects of a SCID diagnosis including questions on how families finance treatment and what causes the greatest financial challenge.

• Developmental support exploring the effects of SCID on developmental progress; access to specialists like psychologists, neurologists, and social workers; receiving guidance on developmental outcomes; and knowledge of school-based support programs.

• Access to care issues focused on the availability of primary care providers familiar with SCID, referrals to specialists, and care coordinators; types of specialists sought such as immunologists, gastroenterologists, hematologists, and pulmonologists; transitioning from pediatric care to adult care; and top five most important things that should be included in long-term follow-up.

UCSF is leading the California Severe Combined Immunodeficiency Consortium Long-Term Follow-up Program, known as CalSCID, to distribute the survey. The results will be used to design a long-term follow-up program that supports child and caregiver well-being and anticipates the future needs of children with SCID.

“Fundamentally, we recognize there’s a need to develop a SCID-specific long-term follow-up program that provides comprehensive family-centered care and addresses long-term outcomes of patients and families with SCID,” said Dr. Morna Dorsey, UCSF immunologist and professor of pediatrics who specializes in primary immunodeficiencies.

“We hope this program can provide care throughout the lifespan of persons with SCID.”

Contributors who helped shaped the questions on the survey include SCID family advocates such as SCID Angels for Life, clinicians from six different centers in California who specialize in taking care of SCID patients, social worker/patient navigators, family care center experts, Immune Deficiency Foundation members, Primary Immune Deficiency Treatment Consortium members, and state newborn screening health experts.

Dorsey said it’s critical to have persons with SCID and caregivers of children with SCID participate in the survey so that their needs inform the direction of the program.

“I think this is hugely important. With this survey, patients and families can tell us what they need from long-term follow-up care and the kind of support and services they desire in a comprehensive program. Their input is essential for developing something that is family-centered,” said Dorsey.

The CalSCID Long-term Follow-up project is funded by the U.S. Health Resources Services Administration (HRSA).