Patient Story ID: 1420407

Patient Story

Spina bifida (SB) is a longitudinal condition, with limited literature assessing how to best support adults with SB. In partnership with a patient advocate who has SB, we developed a needs assessment study to (1) determine the unique psychosocial needs of adults with SB and (2) understand how an adult SB social program could meet these unmet needs.

A 5-point Likert scale survey was administered to all adult SB patients receiving urological care at the academic institution’s transitional SB clinic and urology clinics. Surveys were administered in person and online between May and December 2022. Information was collected on participant demographics, attitudes surrounding the establishment of an adult SB social group, and preferences for how the program would be conducted. Responses of 4 or 5 on the 5-point Likert scale were categorized as agreement and 1-3 as lack of agreement. A total of 67 patients completed the survey. Sixty-four percent (n = 43) of respondents identified as female, and 35.8% (n = 24) identified as male. The median age of participants was 38 years (IQR 20). A total of 41.8% (n = 28) of participants were interested in a social SB program. Ninety-one percent of (n = 61) participants preferred the program to occur at least partly virtually, such as via videoconferencing or prerecorded videos, with 55.2% desiring an exclusively online format. In terms of topics, 62.7% (n = 42) were interested in discussing how to navigate health issues, 29.9% (n = 20) were interested in advice on daily living, and 13.5% (n = 9) were interested in receiving support from peers. About half of the participants (58.2%) desired a health care provider to lead the program, and 29.9% preferred a peer advocate with SB to lead the group. There was no significant difference in patient preferences for group format or leader based on respondent age, education, and residential independence.

With an understanding of what patients with SB will value in a social group, steps to plan the group’s events have started to take place. Because patients desired an organized discussion on topics related to health concerns, one predetermined topic will be discussed at each session. Topics most saliently suggested by patients in the survey included (1) sexual health, (2) establishing a healthy work-life balance when disabled, (3) health issues related to SB across the lifespan, (4) financial health, and (5) coping strategies while having health struggles. With notable interest in a health care provider and an SB patient advocate in leading the group, the group will be co-led by a peer advocate and physician. Each session will include sharing medical information relevant to the day’s topic by the physician, followed by group discussion led by the peer advocate. To include as many interested patients as possible, a hybrid model with virtual and in-person components will be offered.

An SB social group may address the unmet needs of adults with SB and improve patients’ quality of life. The social group will provide a space for patients to engage in the disability community and to discuss issues related to health and wellness.

Future work will describe the impact of the social groups on multiple aspects of quality of life.