Quality of life in patients awaiting lung transplant: cystic fibrosis versus other end-stage lung diseases.
ABSTRACT The symptoms associated with chronic lung disease can impair quality of life and psychosocial functioning. The purpose of the present study was to provide a thorough baseline assessment of quality of life in patients with end-stage lung disease and being evaluated for transplant; and to assess potential differences in quality of life between patients with cystic fibrosis (CF) and those with other types of end-stage lung disease (e.g., chronic obstructive pulmonary disease (COPD), interstitial pulmonary fibrosis (IPF)). We evaluated 58 patients with CF and 52 patients with other types of end-stage lung disease who were recruited for this study during an assessment of their candidacy for lung transplant. Subjects completed a battery of questionnaires that assessed demographic factors (including work and educational status), the presence of psychological distress (anxiety and depression), availability of social support, coping styles, and physical functioning. Despite significant impairment in physical functioning in the areas of recreation, household activities, sleep, and ambulation, other indices of life quality suggested good adaptation in the majority of patients. Also, quality of life differed for patients with CF and for those with other types of end-stage lung disease. Patients with CF were more likely to be working, had lower levels of anxiety and higher levels of social support, and used more functional coping strategies than did patients with other end-stage lung disease. These results highlight the fact that patients with different types of lung disease may require different psychosocial services as they await transplant. These findings also raise the question of whether there is a difference in quality of life after transplant between patients with CF and those with other types of lung disease.
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ABSTRACT: Context-Effective lung transplant education helps ensure informed decision making by patients and better transplant outcomes.Objective-To understand the educational needs and experiences of lung transplant patients.Design-Mixed-method study employing focus groups and patient surveys.Setting-Barnes-Jewish Hospital in St Louis, Missouri.Patients-50 adult lung transplant patients: 23 pretransplant and 27 posttransplant.Main Outcome Measures-Patients' interest in receiving specific transplant information, the stage in the transplant process during which they wanted to receive the education, and the preferred format for presenting the information.Results-Patients most wanted information about how to sustain their transplant (72%), when to contact their coordinator immediately (56%), transplant benefits (56%), immunosuppressants (54%), and possible out-of-pocket expenses (52%). Patients also wanted comprehensive information early in the transplant process and a review of a subset of topics immediately before transplant (time between getting the call that a potential donor has been found and getting the transplant). Patients reported that they would use Internet resources (74%) and converse with transplant professionals (68%) and recipients (62%) most often.Discussion-Lung transplant patients are focused on learning how to get a transplant and ensuring its success afterwards. A comprehensive overview of the evaluation, surgery, and recovery process at evaluation onset with a review of content about medications, pain management, and transplant recovery repeated immediately before surgery is ideal.Progress in transplantation (Aliso Viejo, Calif.) 06/2014; 24(2):132-41. DOI:10.7182/pit2014432 · 0.69 Impact Factor
Article: Cystic Fibrosis and Sleep[Show abstract] [Hide abstract]
ABSTRACT: Sleep disturbances are frequently observed in cystic fibrosis (CF). The resultant sleep fragmentation, short sleep duration, and gas-exchange abnormalities are postulated to contribute to the neurocognitive, cardiovascular, and metabolic abnormalities associated with CF. There are no outcomes data to establish the optimal procedure for screening and treating CF patients for sleep-related respiratory abnormalities. Therapy with supplemental oxygen and bilevel ventilation are widely considered to be effective in the short term, but there are few evidence-based data to support long-term improvements in morbidity and mortality.Clinics in Chest Medicine 09/2014; DOI:10.1016/j.ccm.2014.06.005 · 2.17 Impact Factor
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ABSTRACT: There are no European recommendations on issues specifically related to lung transplantation (LTX) in cystic fibrosis (CF). The main goal of this paper is to provide CF care team members with clinically relevant CF-specific information on all aspects of LTX, highlighting areas of consensus and controversy throughout Europe. Bilateral lung transplantation has been shown to be an important therapeutic option for end-stage CF pulmonary disease. Transplant function and patient survival after transplantation are better than in most other indications for this procedure. Attention though has to be paid to pretransplant morbidity, time for referral, evaluation, indication, and contraindication in children and in adults. This review makes extensive use of specific evidence in the field of lung transplantation in CF patients and addresses all issues of practical importance. The requirements of pre-, peri-, and postoperative management are discussed in detail including bridging to transplant and postoperative complications, immune suppression, chronic allograft dysfunction, infection, and malignancies being the most important. Among the contributors to this guiding information are 19 members of the ECORN-CF project and other experts. The document is endorsed by the European Cystic Fibrosis Society and sponsored by the Christiane Herzog Foundation.01/2014; 2014:621342. DOI:10.1155/2014/621342