Understanding the reasons for nonparticipation in cancer screening may give clues about how to improve compliance. However, limited cooperation has hampered research on nonparticipant profiles. We took advantage of Sweden's comprehensive demographic and health care registers to investigate characteristics of all participants and nonparticipants in a pilot program for colorectal cancer screening with sigmoidoscopy. A population-based sample of 1986 Swedish residents 59-61 years old was invited. Registers provided information on each individual's gender, country of birth, marital status, education, income, hospital contacts, place of residence, distance to screening center and cancer within the family. Odds ratios (ORs) with 95% confidence intervals (CIs), modeled with multivariable logistic regression, estimated the independent associations between each background factor and the propensity for nonparticipation after control for the effects of other factors. All statistical tests were 2-sided. Being male (OR 5 1.27, 95% CI 5 1.03-1.57, relative to female), unmarried or divorced (OR 5 1.69, 95% CI 5 1.23-2.30 and OR 5 1.49, 95% CI 5 1.14-1.95, respectively, relative to married) and having an income in the lowest tertile (OR 5 1.68, 95% CI 5 1.27-2.23, relative to highest tertile) was associated with increased nonparticipation. Living in the countryside or in small communities and having a documented family history of colorectal cancer was associated with better participation. Distance to the screening center did not significantly affect participation, nor did recent hospital care consumption or immigrant status. To increase compliance, invitations must appeal to men, unmarried or divorced people and people with low socioeconomic status. ' 2007 Wiley-Liss, Inc.Key words: mass screening; colorectal neoplasms; sigmoidoscopy; patient participation; registers To be effective on a population level, screening programs have to be widely accepted. To minimize nonparticipation, it is important to understand the reasons for nonattendance and to identify groups that would benefit from extra recruitment efforts. Further, understanding of selection forces is necessary for valid interpretation of the effects of screening.Investigators of nonparticipation, whether in screening, public health campaigns or scientific investigations typically have to resort to interviews or questionnaires. As the motivation among nonparticipants generally is low, such studies are characterized by low response rates and questionable data quality. For example, in a recently published Norwegian study concerning a colorectal cancer screening program, only 11% of the nonparticipants responded to a follow-up questionnaire. 1 To our knowledge, no comprehensive model explaining nonparticipation in cancer screening has yet gained widespread acceptance. The scarcity of unbiased background information among nonparticipants may have contributed to this lack of a firm conceptual basis for the understanding of underlying mechanisms.We took advantage of 8 national ...

To study quality of life among patients living with a hereditary tumor syndrome, the small group with multiple endocrine neoplasia type 1 (MEN1) was selected. It is characterized by multifocal adenomas of the pancreas, parathyroid, anterior pituitary and other endocrine glands. Patients were assessed at an in-hospital stay and six months later at home. Patients at a specialist ward for MEN1 were recruited consecutively (n = 36) during one year. Eighty-one percent participated (n = 29). Four questionnaires were used: the Hospital Anxiety and Depression Scale (HADS), the Impact of Event Scale (IES), the Life Orientation Test (LOT) and the Short Form-36 (SF-36). Psychosocial outcome measures (anxiety, depression, intrusion, avoidance) changed only marginally between the in hospital stay and six months later at home. However, depression increased for patients categorized as having a high burden of disease and treatment. Compared to population-based norm values, the SF-36 scores of the patient group MEN1were lower for General Health and Social Functioning. Optimism assessed at the hospital was a predictor of Mental Health six months later. Most MEN 1 patients (70%) were pessimists. Patients having a higher burden of disease and treatment are in need of support after discharge. Patients could easily be monitored with questionnaires and, when indicated, offered help for their psychosocial distress.

Background: Self-selection may compromise cost-effectiveness of screening programs. We hypothesized that nonparticipants have generally higher morbidity and mortality than participants. Methods: A Swedish population-based random sample of 1,986 subjects ages 59 to 61 years was invited to sigmoidoscopy screening and followed up for 9 years by means of multiple record linkages to health and population registers. Gender-adjusted cancer incidence rate ratio (IRR) and overall and disease group-specific and mortality rate ratio (MRR) with 95% confidence intervals (95% CI) were estimated for nonparticipants relative to participants. Cancer and mortality rates were also estimated relative to the age-matched, gendermatched, and calendar period-matched Swedish population using standardized incidence ratios and standardized mortality ratios. Results: Thirty-nine percent participated. The incidence of colorectal cancer (IRR, 2.2; 95% CI, 0.8-5.9), other gastrointestinal cancer (IRR, 2.7; 95% CI, 0.6-