Deciding about lung transplantation: informational needs of patients and support persons.

CONTEXT: Information is essential for informed decision making. To date, the informational needs of patients and support persons making the lung transplant decision are unexplored; in addition, the role of support persons in the transplant decision is unknown. OBJECTIVE: To identify the informational needs of patients and support persons attending a transplant clinic for consultation on lung transplantation, and to identify the involvement of support persons in the decision. DESIGN: A qualitative descriptive study and qualitative content analysis. SETTING: Participants were recruited from the Toronto General Hospital Lung Transplant Program. PARTICIPANTS: Twenty-two patients (8 candidates, 14 recipients) and 16 support persons. RESULTS: Most patients made the lung transplant decision in collaboration with their support person and reported receiving adequate information to make an informed decision. Diverse learning needs were identified among and between patients and support persons. Many participants identified the need for more information on practical issues, life after transplantation, and the experiences of transplant recipients. CONCLUSION: Most patients attending a transplant clinic for consultation on lung transplantation felt they made an informed decision; however, modifications to the content, timing, and ways of providing information could enhance the decision-making process for patients and support persons. Specifically, the transplant team can provide information on core lung transplant topics with access to supplementary information to meet specific needs and use materials that vary in source, formats, and time points during the decision-making period.

Factors affecting attainment of paid employment after lung transplantation.

BACKGROUND: Limited data exist regarding return to or attainment of paid employment after lung transplantation. Accordingly, the purpose of our study was to identify the issues relating to paid employment after this procedure. METHODS: We conducted a mailed survey using Dillman's protocol. We mailed questionnaires to surviving Toronto General Hospital lung transplant recipients (n = 190). We used descriptive statistics, t-tests, and chi-square tests to analyze the data. RESULTS: A total of 117 lung transplant recipients completed the questionnaires (70% response rate). The mean age of respondents was 51 +/- 13 years. Fifty-one percent of the sample were women and 72% were married. Cystic fibrosis and chronic obstructive pulmonary disease were the most frequent pre-transplant diagnoses. Fifty-six percent of participants had paid employment at some point before transplant. After transplant, 37% of respondents obtained employment. Individuals who obtained paid employment were more likely to be younger (p = 0.002), to have university degrees (p = 0.02), to report higher health ratings (p = 0.001), and to feel physically able to work (p = 0.01). They also were more likely to express a desire to enter the paid workforce (p < 0.0001); to describe receiving physician encouragement to work (p < 0.0001); to identify the possibility of obtaining paid employment as a primary motivator for the transplantation (p = 0.01); and to report that their previous jobs were available after transplantation (p = 0.01). All individuals who did not obtain paid employment cited personal or transplant-related factors. CONCLUSIONS: Medical and social factors influence attainment of paid employment after lung transplantation. Important components of the pre-transplant assessment are discussion of expectations about attaining employment and openly exploring the recipient's motivation for employment.