Article Text

Inferences for health provision from survival data in cystic fibrosis
  1. P A LEWIS
  1. Public Health Group
  2. School of Postgraduate Medicine
  3. University of Bath
  4. Bath BA2 7AY, UK

    Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    Patients with cystic fibrosis (CF), their families, carers, insurers, health care planners, and CF carriers all have an interest in knowing the lifespan of people with the disease. Evidence-based medicine is now explicitly practised by many clinicians in their everyday clinical work. This practice should include prognosis,1 where the expected lifespan is the most important statistic.

    However, clinicians with a responsibility for these patients are faced with a large literature on the survival of people with CF, which presents a contradictory picture. My purpose is to show how these contradictions may be resolved by reference to other published material. I have examined three “notable” observations to show what inferences may be reasonably drawn from them concerning the lifespan of people with CF.

    In the absence of properly conducted randomised controlled clinical trials, observational methods have been used to try to determine the relative efficacy of different models of providing clinical care, even though such studies provide only weak evidence.2 In particular, the possible advantage of care at specialist centres compared to care by local paediatricians has been debated for many years. Because of the relatively small numbers of cases and local variations in the care delivered, international comparisons have been used to assess these two different strategies for care.

    Basic epidemiological considerations

    All data should relate to a well defined population, preferably the residents of a geographical region. Where a group is studied (such as people with CF) rules should exist which allow individuals to be allocated to that group (diagnosed) and members should be found by population screening. Case finding is less reliable than screening.

    Two different ways of estimating survival

    There are two different methods for calculating survival. Cohort survival would identify all people born with CF in a given time period; each subsequent year those surviving would be noted. Eventually all the cohort will …

    View Full Text