Predictors of health-related quality of life in patients with moderate to severely active ulcerative colitis receiving biological therapy

Abstract

Background and aims: Patients with ulcerative colitis have reduced health-related quality of life compared to the general population. Current treatment strategy aims to reduce patients’ symptoms and increase health-related quality of life. We investigated which symptoms of ulcerative colitis correlate to decreased health-related quality of life.

Methods: Among 743 patients with moderate to severely active ulcerative colitis receiving biological therapy in a cross-sectional national study, we determined which disease-related symptoms, as measured by the Simple Clinical Colitis Activity Index, worsened health-related quality of life scores across the Short Health Scale dimensions, while adjusting for treatment, age, and clinical manifestation, and stratifying for sex, by means of multiple linear regression.

Results: Patients with active disease had decreased health-related quality of life compared to those with inactive disease (median 5.8 (range 4.5–7.5) vs. 2 (0.8–3.3)). Both sexes had decreased health-related quality of life in all dimensions for the symptoms: bowel frequency during daytime (0.37–0.86 and 0.46–0.84), urgency of defecation (0.54–0.79 and 0.49–0.65) and blood in stool (0.50–0.75 and 0.36–0.54) for men and women respectively. Women were more often negatively affected by bowel frequency during night-time (4 domains vs. 1) and arthritis (5 domains vs. 3). In non-stratified analysis female sex is an independent predictor of lower health-related quality of life for 3 domains (0.38–0.53).

Conclusions: Health-related quality of life was most prominently associated with bowel frequency during daytime, urgency of defecation, and blood in stool. Other symptoms associated for some health-related quality of life dimensions, and appear to vary between the sexes.     

Pregnant Women's Responses to Information About an Increased Risk of Carrying a Baby with Down Syndrome

Abstract: Background: Fetal screening for Down syndrome by an ultrasound examination, including measurement of fetal nuchal translucency, at 12 to14 weeks’ gestation is presently being evaluated in a Swedish randomized controlled trial. Women at high risk were offered an amniocentesis to obtain a definite diagnosis. The aim of this study was to explore women's reactions and responses to information about being at high risk after the scan, with a special focus on reactions to a false positive test. Method: Interviews were conducted with 24 women within 1 week after the scan, in midpregnancy, and 2 months after the birth. The interviews were analyzed qualitatively. Down syndrome was confirmed in 4 women, who chose to terminate the pregnancy. The remaining 20 women had a false positive test. Results: For the majority, the risk information caused strong reactions of anxiety and worries about the future. A typical way for women to cope was to “withhold” the pregnancy, to take a “timeout,” and try to live as if they were not pregnant any longer. Some weeks later, when the women received normal results from the chromosome analysis, they resumed being pregnant. Six women ages more than 35 years who had a risk score lower than their age‐related risk did not express similarly strong reactions. Two months after the birth of a healthy baby, most stated they would undergo the same procedure in a subsequent pregnancy. One woman still suffered from the experience when interviewed at 2 months after the birth, and another said she regretted participating in the fetal screening program. Conclusions: A false positive test of fetal screening for Down syndrome by ultrasound examination may cause strong reactions of anxiety and even rejection of the pregnancy. The prevalence of such reactions and possible long‐term effects need further investigation. (BIRTH 33:1 March 2006)     

Measuring psychological well-being. The Adapted General Well-being Index in a primary care setting: a test of validity

The measurement of health outcomes is central to the developmentof health services. Many acute and chronic illnesses and healthinterventions have implications for mental health. This studytests the validity of a 22 item measure of psychological well-being,the adapted general well-being index (AGWBI). A postal healthsurvey, including the AGWBI, was sent to a 10% random sampleof patients aged 16 or over drawn from the computerized listof one general practice. Two hundred and sixty-six respondentsreturned questionnaires (a response rate of 76%). The AGWBIwas fully completed by 94% (249) of the respondents who returnedtheir questionnaires. Only respondents who fully completed theAGWBI are included in the analysis. The AGWBI significantlydiscriminated people with a limiting long term illness, thosereporting suffering from anxiety, depression or bad nerves,users of general practitioner services over the previous twoweeks and respondents reporting taking antidepressants, tranquillizersor sleeping tablets. It was also able to discriminate respondentswith psychosocial difficulties in a small sub-sample who reportedthat they were in excellent health and did not have a limitinglong term health problem or psychological illness. The resultsare broadly supportive of the validity of the AGWBI and suggestit may be appropriate for use in the evaluation of several developingareas of primary care. Further research is needed to test concurrentvalidity, responsiveness and to establish population norms.     

Vegans,Vegetarians and Pescatarians Are at Risk of Iodine Deficiency in Norway

Low iodine intakes have been documented in different population groups in Norway. We aimed to assess iodine status, dietary intake, supplement and macroalgae use, and iodine knowledge in vegans, vegetarians and pescatarians. In this study, 115 vegans, 55 vegetarians and 35 pescatarians from the Oslo region of Norway, aged 18–60 years, participated. A spot urine sample was collected along with a dietary assessment of iodine intake, supplement and macroalgae use. The median urinary iodine concentration (MUIC) in vegans was 43 µg/L (moderate iodine deficiency), in vegetarians 67 µg/L and in pescatarians 96 µg/L (mild iodine deficiency). In multiple linear regression analysis, use of iodine supplements was one of the strongest predictors of UIC. About half of the participants had median 24-h iodine intakes below estimated average requirement (EAR) of 100 µg/day. Fifty percent had low knowledge score, while 27% had very low knowledge score. Vegans, vegetarians and possibly pescatarians in Norway, are unable to reach the recommended iodine intake merely from food and are dependent on iodine supplements. There is an urgent need for dietary guidance targeting vegans, vegetarians and pescatarians to avoid inadequate iodine intake in non-supplement users, as well as avoiding excess iodine intake in macroalgae users.