Context

Little is known about adolescents' and young adults' experience with cystic fibrosis while waiting for or after receiving a lung transplant. The psychological and psychosocial factors that may influence these patients' transplant outcomes are yet to be fully explored.

Objective

To explore the psychosocial impact of the lung transplant journey on adolescents and young adults with cystic fibrosis.

Design

A questionnaire-based pilot study was used to enable descriptive, comparative, and correlational analyses between pretransplant and posttransplant groups. Setting—A major lung transplant unit in Australia.

Participants

Twenty-seven patients (9 before and 18 after transplantation) participated in the study. The mean ages were 18.7 years (SD 4.2) and 22.6 years (SD 3.9) in the pretransplant and posttransplant groups, respectively.

Results

In all domains of the Short Form 36 except Mental Health and Social Functioning, the posttransplant group had significantly higher scores (P < .05) compared to the pretransplant group. The Hospital and Anxiety and Depression Scale total Distress score in the posttransplant group was related to the number of rejection episodes (r = 0.47, P = .049) as well as hospital admissions (r = 0.51, P = .012). The number of rejection episodes was significantly related to patients' perceived level of self-efficacy (P = .025), importance to health (P = .001), and ease (P = .10) of monitoring their symptoms.

Conclusion

This study provides some insight into the needs of adolescents and young adults with cystic fibrosis and the differences between those who are awaiting a transplant and those who have received a transplant. Assessing the young person's perceptions in relation to activities such as exercising, monitoring symptoms, and taking medications can give helpful insights into the transition phase, but require further research.