DESCRIPTION: This project will use improved methods of longitudinal
analysis to evaluate the multidimensional course of quality of life
(QOL) in the four years following bone marrow transplantation (BMT),
providing better descriptions of how QOL changes following BMT, thereby
allowing patients to make more informed choices among competing
treatments. The increased precision and accuracy offered by these methods
may enable clinicians to intervene prospectively to minimize
complications and smooth the path to recovery. The new methods for
longitudinal evaluation are general, and will extend to other cancer
populations.
Building on an existing survey of 125 extreme (6 18 years) long term
survivors and on extensive pilot work with new one year survivors,
approximately 150 new patients will be recruited each year (600 total)
for QOL assessments at 6 month intervals over four years, yielding a
much larger longitudinal BMT sample than any previously studied. The
questionnaire battery assesses functioning in the physical, role,
emotional, cognitive, and social domains, and includes general
psychometric assessments of affective and health perceptions. In
addition, the battery includes BMT specific inventories, developed by
project personnel, assessing late medical complications and demands
imposed by recovery. Participating patients will complete all
questionnaires in their residences, receiving and returning the packets
by mail.
The new longitudinal data collected for this project will enhance
psychometric development by a (a) developing a briefer form of existing
instruments amenable to more frequent administration, and (b) using
structural equation modeling techniques to establish and improve the
sensitivity to change of key indicators in the battery. Because of the
large projected sample, standard longitudinal analyses will precisely
describe the expected quality of life for patients conditional on
survival to each assessment. Surviving subsamples, however, may
selectively overestimate expected trends for the general population of
new patients; thus a major focus of this study is the development of
unconditional estimates of QOL trends that are not subject to this
attrition bias. To obtain unconditional estimates of quality of life
trends, the authors will a) employ mixed effects models as discussed by
Donaldson; and b) develop endpoints, formally similar to Q TWIST, that
use psychometric norms to weight survival times for QOL experienced
during BMT recovery.
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- The DCCPS Team.