Introducing patient-reported outcome in the acute leukemia quality registries in Sweden.

OBJECTIVES: The use of patient-reported outcome (PRO) measured outside clinical trials is not well defined. We report the first analysis of the prospective PRO study within the Swedish acute myeloid leukemia (AML) and the acute lymphoblastic leukemia (ALL) registries. METHODS: PRO was requested 6 months after diagnosis. The EORTC Quality of life Questionnaire Core 30-item, the Patient Health Questionnaire-8 (PHQ-8), and questions from a Swedish National Cancer Questionnaire were used. RESULTS: An invitation letter was sent to 398 patients; 255 (64%) responded, 60% web-based, and 40% on paper. The ALL cohort had lower physical, role and social functioning, higher symptom burden, and more financial difficulties compared to the AML cohort. A PHQ-8 score ≥ 10p, which indicates depression, was reported in 18% of the patients; 33% of these patients reported being prescribed antidepressants. The patients' overall experience of care was satisfying, but more psychological and practical support was desired. There was no difference in survival between patients who reported their PRO and those who did not. Follow-up at 2 and 4 years is ongoing. CONCLUSIONS: PRO collected in a registry-based setting is feasible, but the selection of time points and questionnaires are delicate in a diverse patient population.

Survival of esophageal and gastric cancer patients with adjuvant and palliative chemotherapy-a retrospective analysis of a register-based patient cohort.

PURPOSE: The survival of esophageal and gastric cancer patients treated with chemotherapy is rarely assessed outside of clinical trials. Therefore, we compared the effectiveness of various curative or palliative chemotherapy regimens on the survival of esophageal and gastric cancer patients in a "real world" clinical setting. METHODS: We identified a cohort of 966 incident esophageal and gastric cancer patients in Stockholm/Gotland County (a low-risk Western population) during 2008-2013. Patients who received chemotherapy with curative intention (n = 279) and palliative intention (n = 182) were analyzed separately. Using Cox proportional hazards regression models, we estimated hazard ratios (HRs) with 95% confidence intervals (CIs) and adjusted for the potential confounding factors: age, sex, TNM stage, radiotherapy, comorbidity, marital status, education, income, and country of birth. RESULTS: In esophageal cancer patients with curative treatment intention, we observed a higher hazard for death among patients who received carboplatin-fluorouracil compared to patients who received cisplatin-fluorouracil, corresponding to a HR of 2.18 (95% CI 1.09-4.37). Conversely, in patients with cancer in the gastroesophageal junction who had a curative treatment intention at diagnosis, we observed a reduced hazard for death among those who received fluorouracil-oxaliplatin, compared to patients who received cisplatin-fluorouracil (HR 0.28; 95% CI 0.08-0.96). CONCLUSION: Among patients with esophageal cancer who received treatment with curative intention, cisplatin-fluorouracil was associated with better survival compared to carboplatin-fluorouracil, while patients with gastroesophageal junction cancer who were treated with cisplatin-fluorouracil had worse survival compared to fluorouracil-oxaliplatin.

Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act.

INTRODUCTION: Several supportive care strategies are described in Swedish legislation and policy documents, such as the National Cancer Strategy and the Patient act. No previous systematic evaluation from a patient perspective has been performed. The aim of this study was to evaluate how these supportive care strategies are experienced by patients treated for cancer in the Stockholm-Gotland region. MATERIAL AND METHODS: In this cross-sectional study, we identified patients (diagnosed with gynaecological, haematological, upper gastrointestinal and head and neck cancer during 2014) from the Swedish Cancer Register. The European Organization of Research and Treatment of Cancer, EORTC, Quality of Life Questionnaires, QLQ-C30, Information QLQ-INFO25 and a study-specific questionnaire was used to collect data during follow-up after cancer treatment. We collected data on 869 cancer patients' perception of availability and access to supportive care strategies and how they were experienced. RESULTS: Among the supportive care strategies suggested in the legislation and policy documents, just over half of the patients (n = 393, 53%) reported that they had access to a contact nurse, while 43% (n = 312) had received an individual written care plan and 16% (n= 137) had been referred to palliative care. Only 29% (n = 218) of the patients reported that they had received information about patient advocacy groups and 8% (n= 62) on medical second opinions from their cancer care team. DISCUSSION: The supportive care strategies suggested in Swedish legislation and policy documents may be useful but are only available for some patients. The implementation goals for the National Cancer Strategy and the Swedish Patient act have not been reached.

Increased risks of epilepsy and neuropsychiatric diseases in children of mothers with alcoholic liver disease.

BACKGROUND: Pregnancy in women with liver disease may increase the risk of fetal complication. Data on disease frequencies in children born to mothers with alcoholic liver disease do not exist, although we do know that prenatal alcohol exposure may affect the fetus negatively. AIMS: The aim of this study was to assess the relative risk of neuropsychiatric diseases in children who were born to mothers with chronic liver diseases. METHODS: We linked the Hospital Discharge Register, Medical Birth Register and Pharmaceutical Register in Sweden between 1969 and 2009 to identify women with liver disease. We identified their children, up to the age of 16 in the Medical Birth Register, born between 1973 and 2009. Between 2005 and 2009, we identified every prescription that was dispensed to these children. RESULTS: We identified 5 124 children of mothers with alcoholic liver disease. There were 22,960 children of mothers with non-alcoholic liver disease. For controls, we used 10 sex-, age- and birthplace-matched children. There were more children born to mothers with alcoholic liver disease before the birth who had been dispensed antiepileptics (n = 11, RR = 3.2 (1.6-6.4)), neuroleptics (n = 7, RR = 5.0 (2.0-12.5)) and drugs to treat attention deficit hyperactivity disorders (n = 22, RR = 5.9 (3.7-9.4)) compared with sex-, age- and regionally adjusted controls. Children born to mothers with non-alcoholic liver disease had significantly increased risk of being dispensed drugs to treat attention deficit disorders (RR = 2.2 (1.8-2.6)). CONCLUSIONS: Mothers with alcoholic liver disease have increased risks of having children with severe neurological and psychiatric disorders.

Mothers with alcoholic liver disease and the risk for preterm and small-for-gestational-age birth.

AIMS: To study pregnancy outcome in women with alcoholic liver disease (ALD). METHODS: Using the Swedish nation-wide Patient and Medical Birth Registers, we investigated risk of adverse pregnancy outcome in 720 women diagnosed with ALD before and 1720 diagnosed after birth and compared them with 24 460 population-based control births. RESULTS: Women with ALD diagnosed before or after birth were generally of higher age and body mass index, more likely to smoke cigarettes during pregnancy and to have a low socio-economic status compared with controls. Women diagnosed with ALD before birth had an increased risk of moderately and very preterm birth, adjusted odd ratio (OR) = 1.53 (95% confidence interval (CI): 1.37-1.72 and 1.15-2.06 95%), respectively. Infants of mothers with ALD before birth were more often small-for-gestational age, adjusted OR = 1.22 (95% CI: 1.05-1.43), and were at increased risk for low Apgar scores (<7) at 5 min, adjusted OR = 1.49 (95% CI: 1.15-1.92) compared with controls. Similar associations with slightly lower-risk estimates were found among women diagnosed with ALD after birth. CONCLUSIONS: ALD is associated with adverse-birth outcomes, highlighting the importance of screening women for alcohol dependence in antenatal care.

Increased mortality risk in patients with phenotypic hereditary hemochromatosis but not in their first-degree relatives.

BACKGROUND & AIMS: Hereditary hemochromatosis (HH) is an autosomal-recessive disorder characterized by iron overload. Relatives of HH patients were screened and those with HH-associated mutations and an increased iron load were identified. However, little is known about their mortality or strategies for their management. We assessed mortality among Swedish patients with HH and their first-degree relatives using health and census registers. METHODS: We performed a matched population-based cohort study of 3832 patients with HH and their 14,496 first-degree relatives using data collected from 1990 through 2007. Mortality data from these groups were compared with that of 38,969 population controls and their 143,349 first-degree relatives using Cox regression analyses. RESULTS: Patients identified on the basis of hospitalization with HH had an increased risk (relative risk [RR]) for death (RR, 2.45; 95% confidence interval [CI], 2.27-2.64; 857 deaths). Patients identified through other means had a mortality risk that was lower than those identified in the hospital but higher than controls (RR, 1.15; 95% CI, 1.00-1.33; 216 deaths). Their first-degree relatives had only a marginally increased mortality risk (RR, 1.05; 95% CI, 1.01-1.10); this RR was similar to that of patients' spouses (RR, 1.09; 95% CI, 0.86-1.38; 82 deaths). Patients with HH who also had a family history of HH did not have an increased mortality risk compared with other groups (RR, 1.05; 95% CI, 0.67-1.62; 21 deaths). CONCLUSIONS: Patients with HH have a modestly increased mortality risk compared with controls. The mortality of relatives is increased marginally compared with controls, and is similar among biological and nonbiological relatives.

Increased risk of esophageal varices, liver cancer, and death in patients with alcoholic liver disease.

BACKGROUND AND AIMS: During the last decades, a multitude of different treatments for chronic liver disease have been introduced. New surveillance programs have been established to detect esophageal varices and liver cancer. The aims of our study were to assess whether the prognosis for patients hospitalized with liver diseases between 1969 and 2006 had improved and to study the differences in mortality and complications between patients with alcoholic liver disease and nonalcoholic liver diseases. METHODS: We used the Swedish Hospital Discharge Register and Cause of Death Register at the National Board of Health and Welfare in Sweden between 1969 and 2006 to identify and follow-up a cohort of patients with liver disease according to the International Classification of Diseases-8, -9, and -10. RESULTS: There were 36,462 patients hospitalized with alcoholic and 95,842 with nonalcoholic liver diseases. The main finding was that patients hospitalized with alcoholic liver disease had an increased mortality risk, compared to patient with nonalcoholic liver disease, 1.89 (1.85 to 1.92). In addition, the patients with alcoholic liver disease had an increased risk for esophageal varices and liver cancer. There was a reduced risk for hospitalization with esophageal varices for patients with nonalcoholic liver disease up to 1998. CONCLUSIONS: We found that the prognosis for patients hospitalized with chronic liver diseases had not improved. Patients with alcoholic liver disease have an increased risk of complications, which suggest that the disease is more aggressive and are in need of closer follow-up than other chronic liver diseases.