科研之友
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摘要
Purpose of review
To review the contribution of various therapeutic interventions on both longevity and quality of life in cystic fibrosis patients.
Recent findings
Long-term survival in cystic fibrosis has increased markedly in the past 25 years, largely due to a robust clinical trials program carried out at Cystic Fibrosis Foundation accredited clinical centers in the United States and similar organizations worldwide.
Cystic fibrosis patients are recommended complex, time-intensive daily therapies that are often difficult for families and patients to sustain long-term. Recently, attention to the perceived value of a particular therapy on a patient's well being is recognized as important for individualizing therapeutic regimens that provide maximal clinical benefit and are more likely to be adhered to long-term by the patient. Cystic fibrosis care is in a new era in which patient-related outcomes (PROs) for the assessment of health-related quality of life (HRQOL) are regarded with equal importance to medically beneficial therapies.
Summary
Numerous advances in the clinical care of cystic fibrosis have led to improved survival, although definitive correction of the abnormal cystic fibrosis transmembrane regulator protein function remains elusive. Patients struggle to maintain rigorous, time-intensive therapeutic regimens, whereas clinicians strive to identify which interventions preserve quality of life. Cystic fibrosis patients depend on their caregiver's ability to assess both the medical benefit and the contribution to quality of life that therapeutic regimes bring to their disease. Caregivers, in turn, need measures of HRQOL in order to prioritize the various therapeutic interventions that are at their disposal in order to provide not just longevity, but meaningful quality of life.
- 出版日期2011-10
