4.3 Article

Delay to celiac disease diagnosis and its implications for health-related quality of life

Journal

BMC GASTROENTEROLOGY
Volume 11, Issue -, Pages -

Publisher

BIOMED CENTRAL LTD
DOI: 10.1186/1471-230X-11-118

Keywords

-

Ask authors/readers for more resources

Background: To determine how the delay in diagnosing celiac disease (CD) has developed during recent decades and how this affects the burden of disease in terms of health-related quality of life (HRQoL), and also to consider differences with respect to sex and age. Methods: In collaboration with the Swedish Society for Coeliacs, a questionnaire was sent to 1,560 randomly selected members, divided in equal-sized age-and sex strata, and 1,031 (66%) responded. HRQoL was measured with the EQ-5D descriptive system and was then translated to quality-adjusted life year (QALY) scores. A general population survey was used as comparison. Results: The mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years. The delay has been reduced over time for some age groups, but is still quite long. The mean QALY score during the year prior to initiated treatment was 0.66; it improved after diagnosis and treatment to 0.86, and was then better than that of a general population (0.79). Conclusions: The delay from first symptoms to CD diagnosis is unacceptably long for many persons. Untreated CD results in poor HRQoL, which improves to the level of the general population if diagnosed and treated. By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD as a common health problem is needed, and active case finding should be intensified. Mass screening for CD might be an option in the future.

Authors

I am an author on this paper
Click your name to claim this paper and add it to your profile.

Reviews

Primary Rating

4.3
Not enough ratings

Secondary Ratings

Novelty
-
Significance
-
Scientific rigor
-
Rate this paper

Recommended

Article Pediatrics

Family socio-economic status and childhood coeliac disease seem to be unrelated-A cross-sectional screening study

Fredrik Norstrom, Fredinah Namatovu, Annelie Carlsson, Lotta Hogberg, Anneli Ivarsson, Anna Myleus

Summary: The study found no significant associations between parents' education level and occupation with coeliac disease prevalence, suggesting that parental socioeconomic status is not a reliable indicator for identifying children at higher risk of coeliac disease.

ACTA PAEDIATRICA (2021)

Article Clinical Neurology

Community health workers to improve adherence to anti-seizure medication in rural South Africa: Is it cost-effective?

Ryan G. Wagner, Fredrik Norstrom, Melanie Y. Bertram, Stephen Tollman, Lars Forsgren, Charles R. Newton, Lars Lindholm

Summary: The study analyzed the cost-effectiveness of deploying community health workers to improve epilepsy treatment adherence in rural South Africa using a Markov model. The results showed that this intervention was cost-effective and had the potential to reduce the treatment gap for epilepsy in rural areas of South Africa.

EPILEPSIA (2021)

Article Gastroenterology & Hepatology

Is mass screening for coeliac disease a wise use of resources? A health economic evaluation

Fredrik Norstrom, Anna Myleus, Katrina Nordyke, Annelie Carlsson, Lotta Hogberg, Olof Sandstrom, Lars Stenhammar, Anneli Ivarsson, Lars Lindholm

Summary: Research indicates that conducting mass screening for coeliac disease can effectively lower diagnosis delay, and is cost-effective at a threshold of 50,000 Euro per gained QALY.

BMC GASTROENTEROLOGY (2021)

Article Geriatrics & Gerontology

Transitions between levels of dependency among older people receiving social care - a retrospective longitudinal cohort study in a Swedish municipality

Magnus Zingmark, Fredrik Norstrom

Summary: Baseline distributions and transitions over time between levels of dependency among older persons after being granted social care in a Swedish municipality were described descriptively and analysed with survival analysis. Older people in Sweden being allocated home help are at high risk for decline towards higher levels of dependency, especially those at mild or moderate dependency levels at baseline. It is important for municipalities to implement cost-effective preventative interventions for older people at an early stage before a decline toward increasing levels of dependency.

BMC GERIATRICS (2021)

Article Pediatrics

Five-year follow-up of new cases after a coeliac disease mass screening

Olof Sandstrom, Fredrik Norstrom, Annelie Carlsson, Lotta Hogberg, Maria van der Palz, Lars Stenhammar, Charlotta Webb, Anneli Ivarsson, Anna Myleus

Summary: The study found a high risk of conversion to coeliac disease among those with potential disease within 5 years, while individuals with a negative serological screening had a very low risk of being clinically diagnosed during the follow-up period.

ARCHIVES OF DISEASE IN CHILDHOOD (2022)

Review Cardiac & Cardiovascular Systems

Rheumatic heart disease prevalence in Namibia: a retrospective review of surveillance registers

Panduleni Penipawa Shimanda, Stefan Soderberg, Scholastika Ndatinda Iipinge, Ebba Mwalundouta Neliwa, Fenny Fiindje Shidhika, Fredrik Norstrom

Summary: This study aimed to estimate the prevalence of rheumatic heart disease (RHD) and assess the related healthcare systems in Namibia. The findings suggest a lower prevalence of clinically diagnosed RHD in Namibia, with a higher impact on young people and a concentration of cases in the northeastern regions. The study also identified weaknesses in the healthcare systems, including lack of patient unique identifiers, missing data, and inadequate clinic-based prevention activities.

BMC CARDIOVASCULAR DISORDERS (2022)

Article Health Care Sciences & Services

Methodological perspectives on the study of the health effects of unemployment - reviewing the mode of unemployment, the statistical analysis method and the role of confounding factors

Fredrik Norstrom, Anne Hammarstrom

Summary: The study examines the relationship between unemployment and health, focusing on the sensitivity of estimates based on different measurements of unemployment and statistical models. The results highlight the importance of how unemployment is measured in estimating the relationship between unemployment and health. The choice of statistical model has minimal impact on the estimates, except for the inclusion of a variable measuring health status before becoming unemployed.

BMC MEDICAL RESEARCH METHODOLOGY (2022)

Article Psychiatry

Healthcare utilisation among patients with stress-induced exhaustion disorder treated with a multimodal rehabilitation programme - a longitudinal observational study

Fredrik Norstrom, Lisbeth Slunga Jarvholm, Therese Eskilsson

Summary: This study aimed to explore the healthcare utilization, health-related quality of life, work ability, sick leave level, and psychological measures of patients with stress-induced exhaustion disorder before, during, and after a multi-modal rehabilitation (MMR) program. The results showed an increase in healthcare consumption during MMR, with residual health problems remaining after the program.

BMC PSYCHIATRY (2022)

Article Health Care Sciences & Services

Estimating a social value set for EQ-5D-5L in Sweden

Sun Sun, Ling-Hsiang Chuang, Klas-Goran Sahlen, Lars Lindholm, Fredrik Norstrom

Summary: This study aims to establish a value set based on EQ-VT for EQ-5D-5L to support decision-making in Sweden. Various models were tested using c-TTO and DCE data, with the preferred model being the heteroskedastic model based on the c-TTO data. The value set can be used in economic evaluations for reimbursement decision making in Sweden.

HEALTH AND QUALITY OF LIFE OUTCOMES (2022)

Article Pediatrics

The prevalence of having coeliac disease in children with type 1 diabetes was not significantly higher during the Swedish coeliac epidemic

Mara Cerqueiro Bybrant, Elsa Palmkvist, Hanna Soderstrom, Marie Lindgren, Hans Hildebrand, Fredrik Norstrom, Annelie Carlsson

Summary: This study investigated whether there was a difference in the prevalence of coeliac disease in children with type 1 diabetes born during and after the Swedish coeliac epidemic. The study found no significant difference in the prevalence of coeliac disease among children with type 1 diabetes between the two cohorts.

ACTA PAEDIATRICA (2023)

Article Public, Environmental & Occupational Health

How does the distribution of work tasks among home care personnel relate to workload and health-related quality of life?

Fredrik Norstrom, Magnus Zingmark, Anita Pettersson-Stromback, Klas-Goran Sahlen, Malin Ohrling, Karin Bolenius

Summary: This study investigates the relationship between workload, health-related quality of life, and work distribution preferences among home care workers in Sweden. It found that higher workloads were associated with tasks such as responding to personal alarms, running errands, rehabilitation, and help with bathing. Personnel preferred to spend less time responding to personal alarms and more time providing social support.

INTERNATIONAL ARCHIVES OF OCCUPATIONAL AND ENVIRONMENTAL HEALTH (2023)

Article Endocrinology & Metabolism

Cumulative incidence of type 1 diabetes in two cohorts of children with different national gluten recommendations in infancy

Marie Lindgren, Elsa Palmkvist, Fredrik Norstrom, Mara Cerqueiro Bybrant, Anna Myleus, Ulf Samuelsson, Johnny Ludvigsson, Annelie Carlsson

Summary: In Sweden, there was a fourfold increase in the incidence of celiac disease in young children between 1985 and 1996. It was believed that the timing and amount of gluten introduced during infancy could explain this epidemic. A national register study compared the cumulative incidence of type 1 diabetes in two birth cohorts, and found that children born after the epidemic had a higher incidence of type 1 diabetes compared to those born during the epidemic.

ACTA DIABETOLOGICA (2023)

Article Health Care Sciences & Services

Digital Graphic Follow-up Tool (Rehabkompassen) for Identifying Rehabilitation Needs Among People After Stroke: Randomized Clinical Feasibility Study

Xiaolei Hu, Karolina Jonzen, Olof A. Lindahl, Marcus Karlsson, Fredrik Norstrom, Erik Lundstrom, Katharina Stibrant Sunnerhagen

Summary: The study evaluated the feasibility and acceptability of Rehabkompassen as a digital follow-up tool for stroke patients in outpatient clinical settings. The results showed high feasibility and adherence of the study protocol, as well as high acceptability of Rehabkompassen among patients and physicians, indicating potential for a large definitive RCT.

JMIR HUMAN FACTORS (2022)

Article Medicine, Research & Experimental

Does a gluten-free diet lead to better glycemic control in children with type 1 diabetes? Results from a feasibility study and recommendations for future trials

Hanna Soderstrom, Matti Cervin, Jonatan Dereke, Magnus Hillman, Iren Tiberg, Fredrik Norstrom, Annelie Carlsson

Summary: The study found that children with newly diagnosed T1D showed better glycemic control after following a GFD, suggesting a positive effect of GFD on blood sugar control. However, the GFD group reported poorer quality of life. The findings should be interpreted with caution due to the small sample size and possible confounding effects.

CONTEMPORARY CLINICAL TRIALS COMMUNICATIONS (2022)

No Data Available