Health status assessment for persons with chronic illness includes not only symptoms, but also an appraisal of the psychosocial concomitants of illness. In this national study of persons with inflammatory bowel disease (IBD), we standardized a disease-specific 25-item measure of perceived health status: the Rating Form of IBD Patient Concerns (RFIPC). Factor analysis yielded four indices: a) impact of disease (e.g., being a burden, loss of energy, loss of bowel control); b) sexual intimacy; c) complications of disease (e.g., developing cancer, having surgery, dying early); and d) body stigma (e.g., feeling dirty or smelly). A higher level of IBD concerns was associated with greater disease severity, female gender, and lower educational status. When controlling for these factors, as well as disease type and age, we found that concerns about: a) impact of disease was positively associated with poorer perception of health and well-being, greater psychological distress (SCL-90), and poorer daily function (Sickness Impact Profile) (p less than 0.0001); b) sexual intimacy was related to poorer psychologic function (p less than 0.01); and c) complications of disease was related to several measures of poorer daily function (p less than 0.0001 to 0.01). This standardized measure of the worries and concerns of persons with IBD may be used in clinical care and research to evaluate the effects of interventions on IBD patient outcomes.
We randomly surveyed 997 members of the Crohn's and Colitis Foundation of America with inflammatory bowel disease (320 ulcerative colitis and 671 Crohn's disease) in order to: (1) assess their health status, (2) compare members with ulcerative colitis and Crohn's disease, and (3) determine the correlates of health care use. Data collection included variables relating to physical and psychological symptoms, medication use, daily functional status, perceptions of health, and coping styles. The findings indicate that: (1) despite a number of symptoms and complications related to inflammatory bowel disease, the health status of this population is generally good and may be a result of effective coping styles; (2) those with Crohn's disease have more psychosocial difficulties, which appear related to greater symptom severity; (3) both psychosocial and physical health variables are related to number of physician visits, while primarily physical health variables are related to number of hospitalizations and surgeries. Further studies are needed to determine the representativeness of this self-selected sample with others having IBD. In this study, we have provided the basis for developing a more sensitive measure of health status than currently exists, and one which may have implications for future clinical studies.
The assessment of health-related quality of life may be an adjunct to understanding the chronic illness experience and its effects on health outcomes. In this study, we evaluated health-related quality of life of 150 patients with inflammatory bowel disease (63 ulcerative colitis, 87 Crohn's disease). We used a standardized measure, the Sickness Impact Profile, and a questionnaire we developed that elicits and prioritizes the disease-related worries and concerns of patients with IBD. Our preliminary data indicate that: (1) IBD patients experience moderate functional impairment more in the social and psychological than in the physical dimensions; (2) Crohn's disease patients report psychosocial dysfunction to a greater degree than ulcerative colitis patients; (3) IBD patients report greatest concerns about having surgery, degree of energy, and body image issues such as having an ostomy bag; and (4) functional status and patient concerns correlate better with other measures of health status and previous health care utilization than the physician's rating of disease activity. We believe that questionnaires measuring health-related quality of life (HRQOL) can be used in research and patient care to extend the clinical assessment of patients with IBD. Further work is needed to determine the role of HRQOL relative to disease activity and other physician-based assessments in predicting health outcomes.
Preadolescence involves cognitive, social, and physiological changes along with changes in the child's environment. During this developmental stage, young adolescents are transitioning into middle school, forming a larger social network, and managing parental expectations for assuming more responsibility for self-care. The impact of these developmental changes on asthma management is not well understood. The purpose of this study was to better understand asthma and asthma management from the perspective of middle school students. A partnership was formed between the university researcher, several school nurses, and a representative of the health department, through the Orange County Asthma Coalition. Funds were secured from the American Lung Association. School nurses helped to identify and recruit 50 middle school students with asthma to participate in focus groups. The focus-group discussions centered on asthma management with implications for intervention development. Analyses sought to identify developmental issues that affect management. Results indicated that the transition to middle school represents a challenge to managing asthma. As compared with the elementary school environment, support structures are broader and more diffuse, physical education is more demanding, and peer pressure is greater. Nevertheless, the desire for greater autonomy and independence in self-care was strong, particularly among eighth graders. Most interventions are designed for either children or adults, without recognizing the important developmental changes that are occurring in preadolescents with implications for asthma management. A school-based intervention in middle school may help students with asthma transition to greater autonomy of care, while easing transition in other domains of life.
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