Transition programs in cystic fibrosis centers: Perceptions of team members

Abstract

We previously surveyed cystic fibrosis (CF) center directors and adult patients with CF to assess their perceptions regarding transition from a pediatric to an adult setting. An important finding in those studies was a lack of standard programs for transfer of young adults with CF from pediatric to adult care settings. Patients with CF typically receive care from clinics utilizing a multidisciplinary approach, suggesting that every member of the CF team can impact the transition process. Our purpose in this study was to gain an appreciation for various team members' perspectives on transition. An Internet survey was offered to all CF centers across the country to be completed by team members, excluding physicians. We received 291 completed surveys, nearly half completed by nurses, but our respondents included social workers, nutritionists, respiratory therapists, and a few team members with other training. Nearly half of the respondents work for both pediatric and adult teams. The majority of respondents (71.8%) reported that their adult patients receive care from an internist in a separate adult program, but nearly 20% reported that a pediatrician follows their adult patients. A minority thought that age (37.4% of respondents), marriage (16.2%), and pregnancy (27.1%) were criteria for transfer, though most (86.2%) suggested that patients should be transferred by age 21 years. Criteria precluding transfer included patient/family resistance (45%), disease severity (34%), and developmental delay (31.3%). It was uncommon (11.4%) for an introduction to the concept of transition at the time of diagnosis. Over one-half of patients did not meet the adult team until time of transfer. Team members' perceptions of patients' concerns were similar to what we had previously measured in physicians, again far greater than what we have measured in patients themselves. In many ways, what we have measured here in team members reflects what we have reported by physicians, demonstrating slow development of standard transition programs and an overestimate of patients' concerns regarding transition. These differences may impede the successful transition of patients into an adult program. It is clear from this study that team members have an interest in and opinions on transition, and are likely play a vital role in the transition process. Standard programs of transition should be developed, and team members should be engaged in that process.

Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions

“…8 It is unclear as to whether this is also true for additional diseases or conditions, although other articles cite nurses as being in the best position to successfully coordinate transition efforts. 7,9 Articles addressing the concerns of providers suggest that pediatricians have apprehensions regarding the care their former patients may receive in an adult care setting. 9 Adult providers also were found to express concern about providing care to patients with conditions for which they may be unfamiliar in treating.…”

“…7 Another article comparing providers who care for patients with sickle cell disease found that of the many potential health care providers, nurse practitioners were more likely to provide services associated with transitioning care. 8 It is unclear as to whether this is also true for additional diseases or conditions, although other articles cite nurses as being in the best position to successfully coordinate transition efforts.…”

Standards of care for patients with cystic fibrosis: a European consensus

“…The time of transition to an adult CF center is 16-18 years of age but should be flexible, reflecting the adolescent's social maturity and health status. To guarantee a lifetime continuity of care there must be a close cooperation between the pediatric and adult units including the development of treatment guidelines [31,32].…”

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

“…[59][60][61] Nonadherence to treatment remains a significant problem, particularly in the pediatric population. [62][63][64] Our study suggests that this may result from self-consciousness and striving to appear normal, engaging in risk-taking behaviors to gain a sense of control and independence, needing to "escape" the illness and exhaustion from the demands of treatment, and a sense of disempowerment.…”