Article

Quality of life (QOL) is an important concept for individuals with chronic health
conditions. Measuring and supporting QOL in children, adolescents, and adults
with spina bifida (SB) may be especially unique given the broad range of complex
health and rehabilitative challenges they encounter.
This article provides a
research update on (a) conceptual and methodological considerations in measuring
QOL and a related construct, health-related quality of life (HRQOL); (b) the
state of the science in QOL and HRQOL for individuals with SB; and (c) gaps in
the evidence and implications for future research. A synthesis of the literature
was limited by the use of 17 different QOL and HRQOL instruments to measure these
constructs and notable weaknesses in the most frequently used condition-specific
HRQOL instrument. However, a tentative pattern of lower scores on the physical
domain of HRQOL measures in individuals with SB in comparison to peers emerged,
while discrepancies in emotional, social, and school domains varied by study.
Recommendations for future research include using a lifespan approach to expand
QOL studies to older adults with SB and focusing on intervention research to
prevent or treat decreased HRQOL.

Langue : ANGLAIS