Integrating the Patient Perspective to Validate a Measure of Disease Severity in Inflammatory Bowel Disease: Online Survey of Patients and Their Physicians.

BACKGROUND: The patient perspective is essential for assessing disease severity, but it is not always adequately considered. We describe how a comprehensive clinical disease severity index (DSI) for inflammatory bowel disease (IBD) correlates with patient global self-assessment (PGSA). METHODS: In an individually linked parallel online survey, physicians provided the DSI, and patients provided self-assessed severity using a global question and visual analog scale (0-100) (PGSA). Mean DSI values by PGSA were calculated with 95% confidence intervals. Pearson correlation (r) and the intraclass correlation coefficient were calculated for PGSA vs DSI. Positive predictive values for identifying severe disease with PGSA categories as a reference were based on a threshold >22 points. RESULTS: The primary analysis included 89 pairs (46 Crohn's disease [CD], 43 ulcerative colitis [UC]) with strict criteria and 147 pairs when less stringent. Common reasons for exclusion were missing values for albumin or colonoscopy. Mean DSI values showed no clear trend with increasing PGSA in CD but good discrimination between moderate, severe, and very severe PGSA in UC. For PGSA on the visual analog scale, r was 0.54 for CD and 0.59 for UC (difference in means: CD 27.7, UC 13.8; intraclass correlation coefficient: CD 0.48, UC 0.58). A high DSI predicted severe disease in 76.2% of CD and 65.2% of UC. CONCLUSIONS: The DSI showed good discrimination for patient-reported disease severity in UC but performed unsatisfactorily in CD. Correlations were moderate. Further refinement of the DSI is suggested to better reflect the patient perspective.

The performance of an inflammatory bowel disease severity score was compared with self-perceived severity based on an individually linked online survey of patients and their physicians. Agreement and prediction of severe disease were moderate and should be improved by integrating the patients' perspective.

Transition from pediatric to adult medical care - A survey in young persons with inflammatory bowel disease.

BACKGROUND: Transition to adult health services is a vulnerable phase in young persons with chronic disease. We describe how young persons with inflammatory bowel disease in Germany and Austria experience care during the transitional age, focusing on differences by type of provider (pediatric vs. adult specialist, no specialist). METHODS: This was a follow up survey in patients previously registered with a pediatric IBD registry. Patients aged 15 to 25 received a postal questionnaire, including a measure of health care experience and satisfaction. Descriptive analyses were stratified by age. Sub-analyses in the 18-20 year age group compared health care experience by type of provider. Determinants of early or late transfer were examined using multinomial logistic regression. RESULTS: 619 patients responded to the survey; 605 questionnaires were available for analysis. Usual age of completing transition was 18. Earlier transfer was more common with low parental SES (OR 1.8, 95% CI 0.7 to 4.6), and less common with advanced schooling (OR 0.5, 95% CI 0.2 to 1.2). Structured transition was uncommon. 48% of the respondents had not received any preceding transition advice. Overall satisfaction with IBD care was high, especially with respect to interpersonal aspects, but less so in aspects of continuity of care. CONCLUSIONS: Despite high overall patient satisfaction, relevant deficiencies in transitional care were documented. Some of these were associated with lower parental social status. Differences in health care satisfaction by type of provider (adult vs. pediatric) were small.

Beneficial Effects of Education on Emotional Distress, Self-Management, and Coping in Patients with Inflammatory Bowel Disease: A Prospective Randomized Controlled Study.

BACKGROUND: Patients with inflammatory bowel disease (IBD) suffer from various physical as well as psychological impairments, and patient education may help improve their well-being. Therefore, we developed a manualized education program for IBD patients addressing medical and psychological issues. This study aimed to evaluate it in a large controlled trial. METHODS: A total of 181 IBD outpatients participated in a prospective, randomized, waitlist-controlled trial; assessments were made before as well as 2 weeks and 3 months after intervention. Analysis of covariance was used to assess intervention effects on disease-related worries and concerns (primary outcome), fear of progression, coping with anxiety, health competencies, health-related quality of life (HRQoL), perceived disease activity, symptoms of depression and anxiety, disease-related knowledge, and coping strategies. Participants' satisfaction with the program was also evaluated. RESULTS: At 2 weeks and 3 months after intervention, we found significant large effects of our education program on skill and technique acquisition, knowledge, and coping with IBD. Moreover, we found significant medium effects on disease-related worries and concerns, fear of progression, coping with anxiety, constructive attitudes and approaches, as well as coping with disease-related negative emotions. The number of coping strategies used was significantly higher at 3 months. We did not find any effects on perceived disease activity, HRQoL, positive and active engagement in life, or symptoms of anxiety and depression. The program was rated very favorably by the attendees. CONCLUSION: Our education program contributed to improvements in psychological distress, self-management skills, and coping and was appreciated by its attendees.

[Relevanz für Patienten - Naturheilkunde und Komplementärmedizin in medizinischen Leitlinien].

Leitlinien und Patientenleitlinien sind für Patienten von großer Bedeutung. Dies wird hier am Beispiel der chronisch entzündlichen Darmerkrankung dargestellt, wobei der Fokus auf dem Bereich Naturheilkunde und Komplementärmedizin sowie dem Wunsch der Patienten nach qualitätsgesicherten Informationen liegt. Im vorliegenden Beitrag wird auch auf die Forschung im Bereich Komplementär- und Alternativmedizin und die Unterstützungsmöglichkeiten durch den Selbsthilfeverband Deutsche Morbus Crohn / Colitis ulcerosa Vereinigung eingegangen.

Measuring satisfaction with health care in young persons with inflammatory bowel disease--an instrument development and validation study.

BACKGROUND: Patient satisfaction is a relevant prognostic factor in young persons with chronic disease and may be both age and disease specific. To assess health care quality from the patient's view in young persons with inflammatory bowel disease, an easy to use, valid, reliable and informative specific instrument was needed. METHODS: All parts of the study were directed at persons with inflammatory bowel disease aged 15 to 24 ("youth"). A qualitative internet patient survey was used to generate items, complemented by a physician survey and literature search. A 2nd internet survey served to reduce items based on perceived importance and representativeness. Following pilot testing to assess ease of use and face validity, 150 respondents to a postal survey in patients from a paediatric clinical registry were included for validation analyses. Construct validity was assessed by relating summary scores to results from global questions on satisfaction with care using ANOVA. To assess test-retest reliability using intraclass correlation coefficients (ICC), a subset of patients were assessed twice within 3 months. RESULTS: 302 persons with IBD and 55 physicians participated in the item generating internet survey, resulting in 3,954 statements. After discarding redundancies 256 statements were presented in the 2nd internet survey. Of these, 32 items were retained. The resulting instrument assesses both the perceived relevance (importance) of an item as well as the performance of the care giver for each item for calculation of a summary satisfaction score (range 0 to 1). Sensibility testing showed good acceptance for most items. Construct validity was good, with mean scores of 0.63 (0.50 to 0.76), 0.71 (0.69 to 0.74) and 0.81 (0.79 to 0.83) for no, some and good global satisfaction (ANOVA, p < 0.001). Test-retest reliability was satisfactory (ICC 0.6 to 0.7). CONCLUSIONS: We developed an easy to use, patient oriented, valid instrument to assess satisfaction with care in young persons with IBD for use in survey research.