Patients' fears and unmet needs in inflammatory bowel disease
The management of chronic illness is becoming increasingly patient-
centred.
Although patients with inflammatory bowel disease have a normal life
expectancy, most individuals experience an impact of inflammatory
bowel
disease on their daily lives as well as on their attitudes, fears and
beliefs. Although currently available therapies for ulcerative
colitis and
Crohn's disease are becoming increasingly effective, there are still
many
unmet needs to address in this patient population. Physicians and
patients'
spouses or significant others underestimate the type and severity of
problems reported by inflammatory bowel disease patients. Physical
problems
are frequently measured using disease activity indices. Emotional
and social
problems are reported using quality of life questionnaires and other
specific measurement tools pertinent to the question of interest.
Studies
have indicated a poorer physical and emotional function in
inflammatory
bowel disease patients than in the general population. Effective
therapies,
both medical and surgical, produce significant improvements in the
general
and disease-specific quality of life. The quality of life is worse
when the
disease is more severe. Concomitant anxiety or depression appears to
impair
the quality of life even further. Common fears include the
possibility of
unanticipated flares, the need for surgery, poor energy levels and
the
side-effects of medication. Recent studies have suggested that more
prominent patient participation in management has the potential for
greater
patient satisfaction, better outcomes and more efficient health
resource
utilization. Thus, future studies should focus not only on ensuring
the
wider availability of effective therapies, but on increasing access
to
health care that is tailored to individuals — more structure for
some and
more independence and self-management for others, with health
provider
supervision.