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      Health determining concepts important to people with Crohn's disease and their coverage by patient-reported outcomes of health and wellbeing.

      Journal of Crohn's & Colitis
      Elsevier BV
      Patient-reported outcomes, Inflammatory bowel disease, Health promotion, Health and wellbeing, HP, Determinants of health, DHs, DH, Crohn's disease, health promotion, determinants of health, determinant of health

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          Abstract

          Busy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD.

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          Development and testing of a short form of the patient activation measure.

          The Patient Activation Measure (PAM) is a 22-item measure that assesses patient knowledge, skill, and confidence for self-management. The measure was developed using Rasch analyses and is an interval level, unidimensional, Guttman-like measure. The current analysis is aimed at reducing the number of items in the measure while maintaining adequate precision. We relied on an iterative use of Rasch analysis to identify items that could be eliminated without loss of significant precision and reliability. With each item deletion, the item scale locations were recalibrated and the person reliability evaluated to check if and how much of a decline in precision of measurement resulted from the deletion of the item. The data used in the analysis were the same data used in the development of the original 22-item measure. These data were collected in 2003 via a telephone survey of 1,515 randomly selected adults. Principal Findings. The analysis yielded a 13-item measure that has psychometric properties similar to the original 22-item version. The scores for the 13-item measure range in value from 38.6 to 53.0 (on a theoretical 0-100 point scale). The range of values is essentially unchanged from the original 22-item version. Subgroup analysis suggests that there is a slight loss of precision with some subgroups. The results of the analysis indicate that the shortened 13-item version is both reliable and valid.
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            DS14: standard assessment of negative affectivity, social inhibition, and Type D personality.

            Type D personality-a joint tendency toward negative affectivity (NA) and social inhibition (SI)-is related to poor cardiac prognosis, but there is no standard for assessing Type D. This study reports on the Type D Scale-14 (DS14) as a standard measure of NA, SI, and Type D. The study included 3813 participants (2508 from the general population, 573 cardiac patients, 732 hypertension patients). They all filled out the DS14, containing 7-item NA and SI subscales; 275 subjects also completed the NEO-FFI, and 121 patients filled out the DS14 twice. Factor analysis of the DS14 yielded 2 dominant traits; all of the NA and SI items loaded between 0.62 to 0.82 on their corresponding factor (N = 3678). The NA scale covered dysphoria, worry, and irritability; the SI scale covered discomfort in social interactions, reticence, and lack of social poise. The NA and SI scales were internally consistent (alpha = 0.88/0.86; N = 3678), stable over a 3-month period (test-retest r = 0.72/0.82) and not dependent on mood and health status (N = 121). NA correlated positively with neuroticism (r = 0.68); SI correlated negatively with extraversion (r = -0.59/-0.65). Scale-level factor analysis confirmed the construct validity of the DS14 against the NEO-FFI. Using a cutoff of 10 (NA > or =10 and SI > or =10), 1027 subjects (28%) were classified as Type D, 21% in the general population versus 28% in coronary heart disease and 53% in hypertension (p < or = .001). Age, sex, and Type D (odds ratio, 3.98; 95% confidence interval, 3.2-4.6; p <.0001) were independently associated with cardiovascular morbidity. The DS14 is a brief, psychometrically sound measure of negative affectivity and social inhibition that could readily be incorporated in epidemiologic and clinical research.
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              A new measure of health status for clinical trials in inflammatory bowel disease.

              We have developed a measure of subjective health status (quality of life) for patients with inflammatory bowel disease (IBD). Ninety-seven patients with IBD described problems they had experienced as a result of the disease; the 32 most frequent and important items were included in the Inflammatory Bowel Disease Questionnaire (IBDQ). Sixty-one IBD patients were evaluated twice. One month separated the evaluations, at which disease activity indices, the IBDQ, and a number of other questionnaires were administered. Reproducibility studies in 19 stable patients showed improvement in scores, but also a small within-person standard deviation. Responsiveness studies revealed large changes in scores in patients who had improved or deteriorated and suggested that the IBDQ was more responsive than a general health status measure. Responsiveness appeared greater in patients with ulcerative colitis than in those with Crohn's disease. Predicted and observed correlations between changes in IBDQ score and changes in other measures were similar. We conclude that although further testing is required, particularly in examining the relation between changes in the IBDQ and changes in the activity of Crohn's disease, the IBDQ shows promise as a measure of health status for clinical trials in IBD.
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