Patient-reported significant disability after major traumatic upper extremity amputation.

The aims of this study were to record patient-reported outcomes of treatment of proximal upper extremity amputation injuries and subsequent return to work. A consecutive cohort of 38 patients with a traumatic amputation at or proximal to the carpus had been treated with a replantation or revision (completion) amputation in Tampere University Hospital between 2009 and 2019, and 31 of them participated in this study. The primary outcome was the Disabilities of the Arm, Shoulder and Hand Outcome Measure (DASH). Patients reported significant disability indicated by DASH score after replantation (median 30; interquartile range [IQR] 21-47) and revision (completion) amputation (median 33; IQR 16-52). Most patients had cold intolerance and reported low hand function and aesthetics scores. Out of 17 working patients, 10 did not return to their previous work. Our study demonstrates the influence of major upper extremity amputation on daily life activities, even after a successful replantation.Level of evidence: IV.

Burden of illness and use of health care services before and after celiac disease diagnosis in children.

OBJECTIVES: Prevalence of celiac disease in children is approximately 1%, but most patients remain unrecognized by reason of variable clinical presentation. Undetected patients may have an increased burden of illness and use of health care services because of nonspecific complaints. We investigated these issues prospectively in newly detected patients with celiac disease before and after diagnosis in a large nationwide cohort of children. METHODS: A validated questionnaire was sent to consecutive families whose children had been diagnosed as having celiac disease within 1 year. The survey contained questions about the use of medical consultations, on-demand drugs, vitamins and herbal products, children's absenteeism from day care or school and, parents' work absenteeism. A follow-up questionnaire was sent after 1 year of receiving a gluten-free diet. RESULTS: A total of 132 families responded. A total of 44 children were diagnosed because of gastrointestinal and 88 because of extraintestinal symptoms or by risk-group screening. On treatment, outpatient visits to primary health care decreased from a mean of 3.0 to 1.3 visits per year (P < 0.001), the number of hospitalizations from 0.2 to 0.1 (P = 0.008), and antibiotic prescriptions from 1.0 to 0.5/year (P < 0.001). Visits to secondary and tertiary health care increased from 0.6 to 1.4 (P < 0.001), mostly for celiac surveillance. Use of vitamins, micronutrients, and herbal products increased from 7.3 to 10.2 pills per month (P = 0.028). CONCLUSIONS: Implementation of a gluten-free diet resulted in reduced use of health care services and antibiotic prescriptions in children. Our findings support active case-finding and risk-group screening for celiac disease.

Predictors of persistent symptoms and reduced quality of life in treated coeliac disease patients: a large cross-sectional study.

BACKGROUND: Evidence suggests that many coeliac disease patients suffer from persistent clinical symptoms and reduced health-related quality of life despite a strict gluten-free diet. We aimed to find predictors for these continuous health concerns in long-term treated adult coeliac patients. METHODS: In a nationwide study, 596 patients filled validated Gastrointestinal Symptom Rating Scale and Psychological General Well-Being questionnaires and were interviewed regarding demographic data, clinical presentation and treatment of coeliac disease, time and place of diagnosis and presence of coeliac disease-associated or other co-morbidities. Dietary adherence was assessed by a combination of self-reported adherence and serological tests. Odds ratios and 95% confidence intervals were calculated by binary logistic regression. RESULTS: Diagnosis at working age, long duration and severity of symptoms before diagnosis and presence of thyroidal disease, non-coeliac food intolerance or gastrointestinal co-morbidity increased the risk of persistent symptoms. Patients with extraintestinal presentation at diagnosis had fewer current symptoms than subjects with gastrointestinal manifestations. Impaired quality of life was seen in patients with long duration of symptoms before diagnosis and in those with psychiatric, neurologic or gastrointestinal co-morbidities. Patients with persistent symptoms were more likely to have reduced quality of life. CONCLUSIONS: There were a variety of factors predisposing to increased symptoms and impaired quality of life in coeliac disease. Based on our results, early diagnosis of the condition and consideration of co-morbidities may help in resolving long-lasting health problems in coeliac disease.

Factors associated with dietary adherence in celiac disease: a nationwide study.

AIMS: Diagnostics and follow-up of celiac disease have gradually shifted from tertiary centers to secondary and primary health care. In order to establish whether this has affected the success of treatment, and to identify predictors for dietary non-adherence, we carried out a study in a nationwide cohort of treated celiac patients. PATIENTS AND METHODS: 843 biopsy-proven patients, 94 children and 749 adults, were enrolled and interviewed. Adherence to a gluten-free diet was determined by means of an interview and serological testing. RESULTS: Altogether, 88% were on a strict gluten-free diet; the rest had occasional dietary transgressions. Younger age at diagnosis, being currently a teenager, and current symptoms were associated with non-adherence. There was no association between non-adherence and place of diagnosis, gender, disease phenotype or severity of symptoms before diagnosis, presence of comorbidities, family history of celiac disease, smoking, duration of diet, use of oats, self-efficacy for the diet or lack of follow-up. CONCLUSIONS: Good dietary adherence can be achieved also in patients diagnosed and followed in primary health care. In a country with a high prevalence and good general knowledge of celiac disease, only age at diagnosis and age at present would appear to be major determinants for adherence.

Use of health care services and pharmaceutical agents in coeliac disease: a prospective nationwide study.

BACKGROUND: Approximately 1% of the population suffer from coeliac disease. However, the disease is heavily underdiagnosed. Unexplained symptoms may lead to incremented medical consultations and productivity losses. The aim here was to estimate the possible concealed burden of untreated coeliac disease and the effects of a gluten-free diet. METHODS: A nationwide cohort of 700 newly detected adult coeliac patients were prospectively evaluated. Health care service use and sickness absence from work during the year before diagnosis were compared with those in the general population; the data obtained from an earlier study. Additionally, the effect of one year on dietary treatment on the aforementioned parameters and on consumption of pharmaceutical agents was assessed. RESULTS: Untreated coeliac patients used primary health care services more frequently than the general population. On a gluten-free diet, visits to primary care decreased significantly from a mean 3.6 to 2.3. The consumption of medicines for dyspepsia (from 3.7 to 2.4 pills/month) and painkillers (6.8-5.5 pills/month) and the number of antibiotic courses (0.6-0.5 prescriptions/year) was reduced. There were no changes in hospitalizations, outpatient visits to secondary and tertiary care, use of other medical services, or sickness absence, but the consumption of nutritional supplements increased on treatment. CONCLUSIONS: Coeliac disease was associated with excessive health care service use and consumption of drugs before diagnosis. Dietary treatment resulted in a diminished burden to the health care system and lower use of on-demand medicines and antibiotic treatment. The results support an augmented diagnostic approach to reduce underdiagnosis of coeliac disease. TRIAL REGISTRATION: ClinicalTrials.gov NCT01145287.

Gastrointestinal symptoms and quality of life in screen-detected celiac disease.

BACKGROUND: Active serological screening has proved an effective means of increasing the diagnostic rate in celiac disease. The effects of a long-term gluten-free diet on possible gastrointestinal symptoms and psychological well-being in screen-detected patients have nevertheless remained obscure. METHODS: Abdominal symptoms and quality of life were measured in a large cohort of treated screen-detected celiac adults. Comparisons were made with corresponding symptom-detected patients and with non-celiac controls. Dietary adherence was assessed both by structured interview and by serological testing. RESULTS: In both screen- and symptom-detected celiac groups, 88% of the patients were adherent. On a diet, both screen- and symptom-detected patients reported significantly more gastrointestinal symptoms than non-celiac controls. Those screen-detected patients who reported having no symptoms at the time of diagnosis, also remained asymptomatic during the diet. Despite persistent symptoms, psychological well-being in screen-detected patients was comparable with that in non-celiac controls, whereas the symptom-detected patients showed lower quality of life. CONCLUSION: Long-term treated screen-detected celiac patients, especially women, suffer from gastrointestinal symptoms on a gluten free diet similarly to symptom-detected patients. However, despite a similar frequency of persistent symptoms, the quality of life was unimpaired in the screen found, but remained low in the symptom-detected group.

Burden of illness in screen-detected children with celiac disease and their families.

OBJECTIVES: Because of a variable clinical picture, most children with celiac disease remain unrecognized without active serologic screening. Because, however, many patients are asymptomatic, the justification for screening remains unclear. We assessed health and well-being and the effect of a 1-year gluten-free diet in a nationwide cohort of children with celiac disease detected by screening in at-risk groups. METHODS: A total of 222 newly detected children received a validated questionnaire covering aspects of the burden caused by the undiagnosed celiac disease. After 1 year, adherence to the diet and difficulties attending this, attitudes toward and effects of disease and diet on daily life, and parents' satisfaction with the diagnosis were inquired about. The children's health and parents' concern for it were asked about at diagnosis and on treatment. The outcomes of screen-detected children were compared with those of children diagnosed on the basis of clinical symptoms. RESULTS: Forty-three screen-detected and 88 symptom-detected children responded. Also, 65% of the screen-detected patients experienced symptoms; these, however, being less troublesome and of shorter duration than in symptom-detected subjects. There were no differences between the groups in dietary adherence (71% vs 84% strict diet), management of the diet (80% vs 80%), alleviation of symptoms (78% vs 86%), and improvement in daily life (73% vs 69%), or in satisfaction with the diagnosis (93% vs 88%). Improved health and reduced parental concern were observed in both groups. CONCLUSIONS: Screen-detected children with celiac disease can attain satisfactory dietary adherence and benefit from treatment similarly to symptom-detected patients. The results support intensified screening for celiac disease in at-risk children.

Changes in body mass index on a gluten-free diet in coeliac disease: a nationwide study.

OBJECTIVE: The clinical presentation of coeliac disease has changed and patients are often overweight at diagnosis. There is concern that patients might gain further weight while on a gluten-free diet (GFD). The aim of the study was to evaluate the impact of a GFD on the body mass index (BMI) in a nationwide cohort of coeliac patients and to determine variables predictive of favourable or unfavourable BMI changes. METHODS: We prospectively investigated weight and disease-related issues in 698 newly detected adults diagnosed due to classical or extraintestinal symptoms or by screening. BMI at diagnosis and after one year on a GFD were assessed and compared with that in the general population. RESULTS: At diagnosis, 4% of subjects were underweight, 57% normal, 28% overweight and 11% obese. On a GFD, 69% of underweight patients gained and 18% of overweight and 42% of obese lost weight; in the rest BMI remained stable. Changes were similar in both symptom- and screen-detected patients. The coeliac group had a more favourable BMI pattern than the general population. Favourable BMI changes were associated with subjects' self-rated expertise on GFD and young age at diagnosis, but not dietary counselling received. CONCLUSIONS: BMI improved similarly in screen- and symptom-detected coeliac disease patients on a GFD.

Patients' experiences and perceptions of living with coeliac disease - implications for optimizing care.

BACKGROUND AND AIMS: Little is known regarding the impact of coeliac disease on daily living from patients' own viewpoints. The aim of the study was to investigate patients' perceptions of their disease, dietary treatment and self-rated healthcare needs. METHODS: This prospective study involved 698 newly detected adult coeliac disease patients diagnosed due to classical abdominal symptoms, extraintestinal symptoms or active screening in at-risk groups. Participants were asked about their experiences of living with coeliac disease and of adopting a gluten-free diet, as well as their disease-related needs at diagnosis and after one year on treatment. RESULTS: All patients were equally satisfied that they had been diagnosed with coeliac disease irrespective of initial clinical presentation. However, young patients and those with extraintestinal symptoms or asymptomatic and detected by screening in at-risk groups rated the impact on daily living of the disease and adherence to a gluten-free diet with significantly more disapproval than those with classical symptoms. The former groups clarify also reported dietary lapses and a negative attitude to the disease more frequently. Negative perceptions were associated with dissatisfaction with the quality of doctor-patient communication and younger age at diagnosis. CONCLUSIONS: Established doctor-patient communication is essential in minimizing the disease burden. Particularly young and screen-detected asymptomatic patients and those with extraintestinal manifestations require extensive support.

Utility of the new ESPGHAN criteria for the diagnosis of celiac disease in at-risk groups.

OBJECTIVE: Demonstration of small-bowel mucosal damage has been the basis of celiac disease diagnosis, but the diagnostic approach is undergoing changes. The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition recently stated that in a subgroup of children, high positive transglutaminase 2 antibody (TG2ab) values may be sufficient for the diagnosis. The utility of these new criteria was evaluated by applying the human red blood cell TG2 antibody test (RBC-TG2ab) to a large cohort of children and adults belonging to at-risk groups. METHODS: RBC-TG2ab and endomysial antibodies (EmA) were measured in 3031 family members or other relatives of patients with celiac disease. The RBC-TG2ab values were classified as weak (20-29 U), moderate (30-99 U), and strong (≥100 U) positive. Seropositive subjects were further tested by human recombinant TG2ab (Hr-TG2ab) and for the presence of celiac disease-associated human leukocyte antigen-DQ alleles. Gastroscopy was recommended for all with positive RBC-TG2ab, EmA, or Hr-TG2ab, or weak positive RBC-TG2ab and symptoms. RESULTS: Strong positive RBC-TG2ab has good correlation with EmA and Hr-TG2ab and positivity of DQ2/8, and the diagnosis was established in 94% of both children and adults. In contrast, moderately positive (≥30 U) RBC-TG2ab showed poor correlation with the other tests, and celiac disease was diagnosed in 69% of children and 86% of adults. Most participants with weak positive RBC-TG2ab were negative for EmA and Hr-TG2ab. CONCLUSIONS: In accordance with the new European Society for Pediatric Gastroenterology, Hepatology, and Nutrition criteria, strong positive RBC-TG2ab showed good accuracy and excellent correlation with the other antibodies and celiac-type human leukocyte antigen. In contrast, low or moderately positive RBC-TG2ab values were of unsatisfactory prognostic value for a subsequent diagnosis.

Diet improves perception of health and well-being in symptomatic, but not asymptomatic, patients with celiac disease.

BACKGROUND & AIMS: The benefits of serologic screening and early diagnosis of celiac disease in asymptomatic patients are not known. We investigated the impact of a gluten-free diet on self-perceived health and well-being in symptomatic and asymptomatic patients with celiac disease. METHODS: We performed a prospective study of 698 consecutive adults newly diagnosed with celiac disease because of classic (n = 490) or extraintestinal (n = 62) symptoms or through screening of at-risk groups (n = 146; 23 were asymptomatic and analyzed separately). The survey included questions on health and well-being; quality of life was evaluated by the psychological general well-being (PGWB) questionnaire. Patients were followed for 1 year of treatment; 110 healthy subjects served as controls. RESULTS: On a gluten-free diet, self-perceived health improved significantly among patients with classic symptoms and those detected by screening. Patients in all groups were equally concerned about their health before the diagnosis, but anxiety was alleviated by the gluten-free diet. At diagnosis, the quality of life reduced among all 3 groups but improved significantly among patients on the diet. Among the 23 asymptomatic patients, perception of health worsened and concern about health increased while they were on the diet. CONCLUSIONS: Self-perceived health and well-being were low among patients at the time they were diagnosed with celiac disease. Most patients benefited from a gluten-free diet, so it is important to identify patients with celiac disease. Perception of health decreased among asymptomatic cases, which discourages population-based screening.