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Introduction: Children with premature adrenarche (PA) have increased adrenal androgen concentrations and earlier pubertal development than their peers. Early sexual maturation and exposure to androgens have both been associated with an increased risk for neuropsychological adversities in adulthood. Such adversities would presumably influence the experienced health-related quality of life (HRQoL) of those affected. Methods: In a longitudinal case-control cohort study, 30 PA girls and 40 age-matched controls were followed from childhood to young adult age. The main outcome measure was the total 15D HRQoL score. In addition, we assessed specific dimensions of the questionnaire, the subjects’ relationship statuses, and living arrangements. Results: There were no differences between the groups in the overall 15D scores (PA, 0.956 [0.052]; control, 0.947 [0.055]; p 0.482) or on any dimension of this instrument. Conclusion: The study suggests that a history of PA does not lead to impaired HRQoL in adult age. [ABSTRACT FROM AUTHOR]

Introduction: Constitutional delay of growth and puberty (CDGP) is the most common reason for delayed puberty in healthy male adolescents. The main indication for medical treatment for this condition is psychosocial burden. However, to the best of our knowledge, no previous study has addressed the impact of puberty-promoting treatment on health-related quality of life (HRQoL) among boys with CDGP. Methods: We investigated HRQoL in 22 boys with CDGP, who participated in a randomized controlled trial in four Finnish pediatric endocrinology outpatient clinics between 2013 and 2017. The boys were randomized to receive either aromatase inhibitor letrozole (2.5mg/day; n=11) or intramuscular testosterone (1mg/kg/every 4 weeks; n=11) for 6 months and followed up to 12 months. HRQoL was assessed with a generic self-assessment 16D© instrument developed and validated for adolescents aged 12 to 15 years. The 16D includes 16 dimensions (vitality, sight, breathing, distress, hearing, sleeping, eating, discomfort and symptoms, speech, physical appearance, school and hobbies, mobility, friends, mental function, excretion and depression). The results were compared with an age-matched reference population that included 163 boys from the Finnish capital-city area. The study protocol is registered to ClinicalTrials.gov (registration number: NCT01797718). Results: At baseline, the mean 16D score of the CDGP boys was similar to the age-matched reference population (0.95 vs 0.96, p=0.838). However, the physical appearance score (satisfaction with general appearance, height and weight) was significantly lower in the CDGP boys (0.75 vs 0.92, p=0.004) than their peers. Twelve months after treatment, Appearance had improved significantly (0.75 vs 0.87, p=0.004) and no HRQoL dimension was inferior compared to the age-matched reference population. Discussion: In terms of HRQoL, the main impact of delayed puberty was dissatisfaction with physical appearance. Puberty promoting therapy was associated with a positive change in perceived appearance, with no clear difference between low-dose testosterone and letrozole treatments. [ABSTRACT FROM AUTHOR]

Simple Summary: Metastatic colorectal cancer is the second most common cause of cancer death. Long-term survival and cure can be achieved after intensive treatments, including metastasectomy, i.e., the removal of all metastases. We wanted to clarify whether a patient health-related quality of life (HRQoL) was reduced by treatments that aimed to maximise metastasectomy rates, and whether HRQoL of treated patients is comparable to the general population. In a cross-sectional study of 444 patients (1751 questionnaires) in the RAXO-study population, we show that HRQoL of intensively treated patients, sometimes with multiple and multisite metastasectomies—usually combined with systemic therapy—remains at a high level during and after curative treatment and when compared with the general population. Good HRQoL was also seen during non-curative treatment from first- to later-lines, with an impaired HRQoL only at end-of-life. Thus, we should aim at maximising metastasectomies since they give long-term survival and sometimes cure with a high HRQoL. Metastasectomy and/or local ablative therapy in metastatic colorectal cancer (mCRC) patients often provide long-term survival. Health-related quality of life (HRQoL) data in curatively treated mCRC are limited. In the RAXO-study that evaluated repeated resectability, a multi-cross-sectional HRQoL substudy with 15D, EQ-5D-3L, QLQ-C30, and QLQ-CR29 questionnaires was conducted. Mean values of patients in different treatment groups were compared with age- and gender-standardized general Finnish populations. The questionnaire completion rate was 444/477 patients (93%, 1751 questionnaires). Mean HRQoL was 0.89–0.91 with the 15D, 0.85–0.87 with the EQ-5D, 68–80 with the EQ-5D-VAS, and 68–79 for global health status during curative treatment phases, with improvements in the remission phase (disease-free >18 months). In the remission phase, mean EQ-5D and 15D scores were similar to the general population. HRQoL remained stable during first- to later-line treatments, when the aim was no longer cure, and declined notably when tumour-controlling therapy was no longer meaningful. The symptom burden affecting mCRC survivors' well-being included insomnia, impotence, urinary frequency, and fatigue. Symptom burden was lower after treatment and slightly higher, though stable, through all phases of systemic therapy. HRQoL was high in curative treatment phases, further emphasizing the strategy of metastasectomy in mCRC when clinically meaningful. [ABSTRACT FROM AUTHOR]

Background: Behavioral therapy (BT) has been proven effective in the treatment of supragastric belching (SGB) in open studies. The aim was to compare BT to follow‐up without intervention in patients with SGB in a randomized study. Methods: Forty‐two patients were randomized to receive 5 sessions of BT, comprising diaphragmatic breathing exercises, or to follow‐up without intervention. Patients were evaluated at 6 months, at which point the control group was also offered BT and evaluated after another 6 months. The frequency and intensity of belching and mental well‐being were evaluated with a visual analog scale (VAS). Depression, anxiety, and health‐related quality of life (HRQoL) were evaluated with four questionnaires: BDI, BAI, 15D, and RAND‐36. Key results: The frequency and intensity of SGB were significantly lower in the therapy group (n = 19) than in the control group (n = 18) at the 6‐month control (p < 0.001). When all patients (n = 36) were evaluated 6 months after BT, in addition to relief in the frequency and intensity of belching (p < 0.001), mental well‐being had also improved (p < 0.05). Of all 36 patients, 27(75%) responded to BT. Depression scores were lower after therapy (p < 0.05). Only minor changes occurred in anxiety and HRQoL. Conclusions and Inferences: Behavioral therapy is superior to follow‐up without intervention in patients with SGB in reducing belching and depression; it also improves mental well‐being but has only a modest effect on anxiety and HRQoL. [ABSTRACT FROM AUTHOR]

To investigate long-term health-related quality of life (HRQoL) changes over time in younger compared to older disease-free breast cancer survivors who participated in a prospective randomized exercise trial. Survivors (aged 35–68 years) were randomized to a 12-month exercise trial after adjuvant treatment and followed up for ten years. HRQoL was assessed with the generic 15D instrument during follow-up and the younger (baseline age ≤ 50) and older (age >50) survivors' HRQoL was compared to that of the age-matched general female population (n = 892). The analysis included 342 survivors. The decline of HRQoL compared to the population was steeper and recovery slower in the younger survivors (p for interaction < 0.001). The impairment was also larger among the younger survivors (p = 0.027) whose mean HRQoL deteriorated for three years after treatment and started to slowly improve thereafter but still remained below the population level after ten years (difference −0.017, 95% CI: −0.031 to −0.004). The older survivors' mean HRQoL gradually approached the population level during the first five years but also remained below it at ten years (difference −0.019, 95% CI: −0.031 to −0.007). The largest differences were on the dimensions of sleeping and sexual activity, on which both age groups remained below the population level throughout the follow-up. HRQoL developed differently in younger and older survivors both regarding the most affected dimensions of HRQoL and the timing of the changes during follow-up. HRQoL of both age groups remained below the population level even ten years after treatment. • Health-related quality of life of breast cancer survivors was compared to age-matched population. • Quality of life was impaired for at least ten years after diagnosis. • Quality of life impairment was larger and recovery slower in younger survivors. • Largest differences compared to population were in sleeping and sexual activity. [ABSTRACT FROM AUTHOR]

Purpose: The onset of the coronavirus disease 19 (COVID-19) pandemic in Italy induced a dramatic increase in the need for intensive care unit (ICU) beds for a large proportion of patients affected by COVID-19-related acute respiratory distress syndrome (ARDS). The aim of the present study was to describe the health-related quality of life (HRQoL) at 90 days after ICU discharge in a cohort of COVID-19 patients undergoing invasive mechanical ventilation and to compare it with an age and sex-matched sample from the general Italian and Finnish populations. Moreover, the possible associations between clinical, demographic, social factors, and HRQoL were investigated. Methods: COVID-19 ARDS survivors from 16 participating ICUs were followed up until 90 days after ICU discharge and the HRQoL was evaluated with the 15D instrument. A parallel cohort of age and sex-matched Italian population from the same geographic areas was interviewed and a third group of matched Finnish population was extracted from the Finnish 2011 National Health survey. A linear regression analysis was performed to evaluate potential associations between the evaluated factors and HRQoL. Results: 205 patients answered to the questionnaire. HRQoL of the COVID-19 ARDS patients was significantly lower than the matched populations in both physical and mental dimensions. Age, sex, number of comorbidities, ARDS class, duration of invasive mechanical ventilation, and occupational status were found to be significant determinants of the 90 days HRQoL. Clinical severity at ICU admission was poorly correlated to HRQoL. Conclusion: COVID-19-related ARDS survivors at 90 days after ICU discharge present a significant reduction both on physical and psychological dimensions of HRQoL measured with the 15D instrument. Trial Registration: NCT04411459. [ABSTRACT FROM AUTHOR]

Aims: To explore the effectiveness of a new perioperative practice model on anxiety and health‐related quality of life in patients undergoing total hip arthroplasty and total knee arthroplasty under spinal anaesthesia. Design: A randomized clinical trial. Methods: Control group participants (N = 222) received standard perioperative care, meaning they were cared for by various nurses during their perioperative process without postoperative visits. Intervention group participants (N = 231) were assigned one named anaesthesia nurse during their entire perioperative process who visited them postoperatively. Both groups responded to two self‐reported questionnaires: the generic 15D health‐related quality of life instrument and the State‐Trait Anxiety Inventory (STAI) measuring anxiety two to three weeks pre‐operatively and three months postoperatively. Results: There were no statistically significant differences between the groups at baseline or at follow‐up in health‐related quality of life or anxiety. [ABSTRACT FROM AUTHOR]

Objective: To analyze the health-related quality of life (HRQoL) and survival of real-world prostate cancer (PC) patients and to calculate quality-adjusted life-years (QALYs) experienced under different treatment strategies. Materials and Methods: PC patients undergoing active surveillance (n = 226), radiation treatment (n = 280), surgery (n = 299), or hormonal treatment (n = 62) responded to the generic 15-dimensional (15D) HRQoL questionnaire at the time of the diagnosis and were followed up 3, 6, 12, and 24 months later. QALYs experienced during the follow-up were calculated for each treatment group, and variables associated with survival were analyzed using Cox proportional hazards models. Results: HRQoL was stable during the first 2 years after diagnosis in all other treatment groups, except in patients treated with hormonal therapy. The overall survival within 6.5-year follow-up time was 84.4%. The number of QALYs experienced during the 2-year follow-up was similar in patients in active surveillance (1.790), surgery (1.784), and radiation groups (1.767), but significantly lower in the hormonal therapy group (1.665). Conclusions: Patients receiving hormonal treatment had significantly impaired HRQoL and survival compared with other treatments. Although the number of QALYs experienced was similar in the 3 other treatment lines, there were marked differences between treatment lines on some 15D dimensions. [ABSTRACT FROM AUTHOR]

Background and aims: Health-related quality of life (HRQoL) assessments have been widely used in pain medicine as they are able to reflect the subjective and multidimensional nature of chronic pain. Studies have shown a consistent impairment in HRQoL in different chronic pain conditions. However, it is not known whether HRQoL is impaired in chronic orofacial pain (OFP). The generic 15D HRQoL instrument has been shown to fare as well as or better than other generic HRQoL instruments in the study of chronic pain. The aim was to investigate HRQoL in patients with chronic OFP using the generic 15D HRQoL instrument. The validity of the instrument was tested by studying the association of the 15D data with pain interference. Methods: One hundred fifty-one patients (mean age 50 years, SD 15 years, 119 females) were recruited from three tertiary facial pain clinics. HRQoL data of the participants were contrasted with that of an age- and gender- standardized sample of general population by comparing the mean 15D scores and profiles. The data for the general population came from the National Health 2011 Survey representing Finnish population aged 18 years and older. Pain interference was assessed using Brief Pain Inventory. Based on pain interference distribution the participants were divided into tertiles. Statistical comparison between patient and population HRQoL values were performed using Monte-Carlo-type simulations. Statistical significance for the hypothesis of linearity was evaluated by using generalized linear models. Results: The mean 15D score of OFP patients (0.824, SD 0.113) was statistically significantly lower than that of the age- and gender-standardized general population (0.929, SD 0.019) (p < 0.001). The difference between the patients and the general population was also clinically important, i.e. over the minimum clinically important difference in the 15D score. All mean 15D dimension values were significantly lower compared with the general population values (p < 0.001 for all dimensions). The largest differences were seen in the dimensions of discomfort and symptoms (0.418, SD 0.222 vs. 0.816, SD 0.027), sleeping (0.693, SD 0.258 vs. 0.838, SD 0.029), and vitality (0.702, SD 0.221 vs. 0.884 SD 0.026). There was a statistically significant linear decrease in the 15D dimension values (p < 0.001) with increasing pain interference. The greatest differences were found on the dimensions of discomfort and symptoms, sleeping and vitality. Conclusions: HRQoL is significantly impaired in patients with chronic OFP. A decrease in the 15D dimension values with increasing pain interference indicated convergent validity between 15D and pain interference. Implications: The findings suggest that 15D is an appropriate instrument for use in the assessment of HRQoL in OFP patients. By showing the usefulness of the 15D, the present study may encourage further use of generic HRQoL assessments in the study of chronic OFP, and contribute e.g. to the implementation of HRQoL as one of the core outcome measures in future treatment studies on chronic OFP. [ABSTRACT FROM AUTHOR]

Background: An investigator‐driven, real‐life follow‐up study of adult‐onset steroid‐naïve, newly diagnosed asthma (162 patients) to investigate the treatment results over the 25‐year course of the disease and whether the first treatment year's forced expiratory volume in one second (FEV1) predicts the long‐term prognosis. Methods: Eighty‐three per cent of the 133 living patients participated in the 25‐year examinations. At this visit, basic asthma examinations including lung function, as well as questionnaires for health‐related quality of life (HRQoL), GINA and the Asthma Control Test, were used for evaluation. The use of medication and remission was verified. Results: There was no statistically significant change in mean FEV1% predicted (FEV1%) from baseline to the 25‐year control. The changes in FEV1% during the first year predicted the results at the end of follow‐up. Normal FEV1% at the end of the first year predicted normal FEV1, and below‐normal FEV1% at 1 year predicted below‐normal FEV1% at 25 years. Twenty‐nine patients (26.4%) had discontinued their medication, and six (5.5%) used ICS periodically. Clinical remission was reached by 16.4% of the patients, and 7.6% reached functional remission. The general HRQoL remained unchanged. Conclusion: In adult‐onset asthma, the level of FEV1 reached during the first treatment year seems to predict the later lung function level. One quarter of the patients discontinued the asthma treatment, but their HRQoL was better than that of those continuing to use ICS. Clinical remission was reached by 16% of the patients, which is in concordance with other studies. [ABSTRACT FROM AUTHOR]

Background: The prevalence of small intestine neuroendocrine tumors (SI-NETs) is increasing. Disease progression is often slow and treatment options and long-term survival rates have improved, but little is known about health-related quality of life (HRQoL) in these patients. Objective: To assess HRQoL and its predictors in SI-NET patients receiving contemporary treatments. Methods: We measured HRQoL with 15D and SF-36 questionnaires in 134 SI-NET patients and compared the 15D results to those of an age- and gender-standardized sample of the general population (n = 1,153). In the patients, we studied the impact of treatments, Ki-67, liver metastases, circulating tumor markers, comorbidities, and/or socioeconomic factors on HRQoL with linear regression analysis. Results: The mean disease duration of the patients was 81 (4–468) months, 91% had metastatic disease, and 79% received somatostatin analog treatment. Hepatic tumor load was 0% in 44.8%, < 10–25% in 44.0%, and > 25% in 11.2%, respectively. Mean fP-CgA and S-5HIAA concentrations were 15 (1.3–250) and 344 (24–7,470) nmol/L, respectively. Overall, HRQoL was significantly impaired in patients compared to controls (15D score 0.864 ± 0.105 vs. 0.905 ± 0.028, p < 0.001). SI-NET patients scored worse on 9 of 15 dimensions: sleep, excretion (i.e., bladder and bowel function), depression, distress, vitality, sexual activity (p < 0.001), breathing, usual activities, and discomfort and symptoms (p < 0.01–0.05). SF-36 scores were impaired and highly correlated with 15D scores (p < 0.001). HRQoL was impaired in patients with (n = 85) compared to patients without (n = 49) impaired excretion (0.828 vs. 0.933, p < 0.001). In the patient group, number of medications predicted impaired HRQoL. Conclusions: Despite contemporary treatments, SI-NET patients have severely impaired HRQoL, including diarrhea, sleep, depression, vitality, and sexual activity. [ABSTRACT FROM AUTHOR]

Background/Aim: Children with premature adrenarche (PA) are taller and more overweight than their healthy peers, and PA girls have a slightly accelerated pubertal development. There is some evidence that early exposure to androgens may have an influence on psychosocial development. The aim of this cross-sectional case-control study was to evaluate health-related quality of life (HRQoL) in PA children at the age of 12 years. Methods: The HRQoL was assessed for 43 PA (36 girls) and 63 control children (52 girls) at the median age of 12.0 years using the standardized 16D instrument, and the scores of the PA children were compared to those of the control children and reference population. Results: The mean overall HRQoL scores did not differ between PA and control girls, PA and control boys, or all PA and control children or the reference population. Independently of PA, overweight girls had a lower mean overall HRQoL score than lean girls, and both overweight girls and boys were on average worse off on the dimension of appearance than their lean peers. Conclusions: PA children have as good self-rated HRQoL as their peers at the age of 12 years. Overweight is associated with a worse HRQoL profile independently of PA. [ABSTRACT FROM AUTHOR]

We examined how HIV-related self-stigma was associated with different domains of quality of life (QoL), as measured by the World Health Organization Quality of Life in HIV-infected persons instrument (WHOQOL-HIV-Bref), and health-related quality of life (HRQoL) as measured by the generic 15D (15-dimensional measure of HRQoL), to identify the factors associated with self-stigma of people living with HIV (PLWH). The study sample included 440 patients living with HIV followed at the Infectious Disease Clinic of Helsinki University Hospital. Participants with more severe self-stigma reported significantly lower QoL and HRQoL. Male gender, cohabiting with a partner, and disclosure of HIV status were associated with less self-stigma; high education level and financial difficulties were associated with greater self-stigma. Having lived longer with HIV, being unemployed, and living alone were also predictors of self-stigma via financial difficulties. The findings suggest that self-stigma is a complex and multidimensional phenomenon that impacts the HRQoL of PLWH. Psychosocial interventions to enhance the well-being of PLWH are increasingly needed. [ABSTRACT FROM AUTHOR]

Objective:The aims of this study were to measure the real-life health-related quality of life (HRQoL) of newly diagnosed prostate cancer (PCa) patients, to compare it with that of the general male population and to explore factors affecting HRQoL. Methods:All newly diagnosed PCa patients in the Helsinki University Hospital were asked to fill in 15D and EORTC QLQ-C30 questionnaires. Clinical background information was collected retrospectively from patient charts. Patients were categorized into three mutually exclusive groups based on the disease stage: Local, Locally advanced and Metastatic groups. Multivariate linear regression analysis was conducted to explore which factors explained variance in 15D scores. A regression model was built to map the EORTC QLQ-C30 to 15D in a random sample of 50% of patients and the model was tested in the other half of the patients. Results:In total, 1050 men with a mean age of 67 years responded to the questionnaires. The mean ± SD 15D score of patients was slightly lower than that of the age-standardized general male population: 0.905 ± 0.089 vs 0.915 ± 0.082 (p = .057). The mean ± SD 15D utility scores were 0.912 ± 0.084, 0.897 ± 0.102 and 0.855 ± 0.109 for Local, Locally advanced and Metastatic groups, respectively. The mapping model of EORTC QLQ-C30 to 15D was robust and fitted well (root mean square error = 0.042, adjustedR² = .79). Conclusions:The HRQoL of PCa patients entering treatment was similar to that of the general population. HRQoL was most impaired among patients with metastatic disease, whereas the difference between patients with localized PCa and the general population was minor. Mapping indicated that the 15D score aggregates quite accurately the information from the EORTC QLQ-C30. [ABSTRACT FROM PUBLISHER]

Background This study presents a retrospective evaluation of patient, disease, and treatment features predicting long-term survival and health-related quality of life ( HRQoL) among patients who underwent surgery for non-small cell lung cancer ( NSCLC). Methods Between January 2000 and June 2009, 586 patients underwent surgery at the Helsinki University Hospital. The 276 patients still alive in June 2011 received two validated quality of life questionnaires ( QLQ): the generic 15 D and the cancer-specific EORTC QLQ- C30 + QLQ- LC13. We used binary and linear regression analysis modeling to identify patient, disease, and treatment characteristics that predicted survival and long-term HRQoL. Results When taking into account patient, disease, and treatment characteristics, long-term survival was quite predictable (69.5% correct), but not long-term HRQoL ( R2 between 0.041 and 0.119). Advanced age at the time of surgery, male gender, comorbidity (measured with the Charlson comorbidity index), clinical and pathological stages II-IV, and postoperative infectious complications predicted a lower survival rate. Features associated with poorer long-term HRQoL (measured with the 15 D) were comorbidity, postoperative complications, and the use of the video-assisted thoracoscopic surgery ( VATS) technique. Conclusions Long-term HRQoL is only moderately predictable, while prediction of long-term survival is more reliable. Lower HRQoL is associated with comorbidities, complications, use of the VATS technique, and reduced pulmonary function, while adjuvant therapy is associated with higher HRQoL. [ABSTRACT FROM AUTHOR]

Objectives: The objectives of this study were to identify and qualitatively describe, in a systematic literature review, published studies that collected prostate cancer patients' health-related quality of life (HRQoL) estimates by using validated, generic instruments.Methods: Systematic searches of the literature were made using the Medline, Cochrane Library, PsycINFO, and CINAHL electronic databases from 2002 to 2015.Results: The search identified 2,171 references, of which 237 were obtained for full-text assessment; thirty-three of these articles were deemed relevant and included in the systematic review. An indirect valuation method was used in 73 percent (n = 24) of the studies. The most commonly used HRQoL instrument with an indirect valuation method was the EuroQol (EQ-5D; n = 21), and the second most common was the 15D (n = 5). A direct valuation method was used in 48 percent (n = 16) of the studies. Of these, the Visual Analogue Scale (VAS) was the most often used (n = 10), followed by the Time-Trade-Off (n = 6). HRQoL scores varied in localized and early stage disease between 0.63 and 0.91, and in advanced or metastatic disease stage between 0.50 and 0.87. There was also variance in the HRQoL instruments and study methods used, which explains the large variance in HRQoL scores between the various disease stages.Conclusions: Although utility and quality-adjusted life-years gained are considered important measures of effectiveness in health care, the number of studies in which utilities of prostate cancer patients have been estimated using generic HRQoL instruments, based on either direct or indirect measurement of HRQoL, is fairly small. [ABSTRACT FROM AUTHOR]

Objective:The aim of this study was to evaluate health-related quality of life (HRQoL) in adults with hearing impairment in Finland before and after hearing rehabilitation.Design:The study was prospective with hearing-aid rehabilitation as the intervention. The data was collected, using the 15D instrument, before and six months after hearing-aid rehabilitation. The data was analysed using t-tests and multiple linear regression methods.Study sample:The study sample included 949 adults with hearing impairment, and the control group included a sample of age- and gender-standardized general population.Results:The study population had significantly poorer HRQoL on most dimensions of the 15D when compared to the control group both before and after hearing-aid rehabilitation. Hearing-aid rehabilitation resulted in improved mean scores on the dimensions of hearing and in the overall 15D score that were statistically significant, although the mean improvement in the overall score was marginal. Self-reported hearing ability can better predict the change in HRQoL, as a result of a hearing aid, when compared with measured hearing sensitivity.Conclusions:The study supports the hypothesis that on average, use of a unilateral hearing aid results in improved subjective hearing and marginal improvement in HRQoL in adults with hearing impairment. [ABSTRACT FROM PUBLISHER]

Background & Aims To assess health-related quality of life ( HRQoL) of patients with primary sclerosing cholangitis ( PSC), and to compare it with that of the general population. Also, to examine changes in HRQoL in newly diagnosed PSC patients at a follow-up 1-2 years later, and to compare their HRQoL with HRQoL of newly diagnosed inflammatory bowel disease ( IBD) patients. Furthermore, sources of and need for disease-related information among PSC patients were surveyed. Methods Primary sclerosing cholangitis patients filled in the survey questionnaire when attending an endoscopic retrograde cholangiography examination. The 15D served as a general HRQoL instrument. The follow-up questionnaire was mailed to the newly diagnosed patients 1-2 years later. Results No significant difference was seen in 15D scores between PSC patients and general population, but the dimensions of excretion ( P < 0.001), depression ( P = 0.003), distress ( P = 0.003) and vitality ( P = 0.005) were significantly lower in PSC. Age and symptoms affected HRQoL but severity of biliary changes did not. Those with newly diagnosed IBD had lower 15D scores than those with PSC. No significant changes were observed in 15D scores of new PSC patients in the follow-up. Many patients were dissatisfied with information received. Conclusion Newly diagnosed PSC patients have better HRQoL than do IBD patients, and no significant HRQoL changes were observed in the mean follow-up of 1.58 years after PSC diagnosis. ERC findings did not correlate with HRQoL or symptoms. HRQoL of PSC patients was mostly comparable with that of general population, but special attention should be paid to patients' psychological well-being. [ABSTRACT FROM AUTHOR]

Background: Screening for type 2 diabetes helps detect previously unknown diabetes and identify people with pre-diabetes, but the adverse impact of such screening on individuals labelled as pre-diabetes or classified as normal, is less known. In this study the health-related quality of life (HRQoL), depression and lifestyle changes in a rural Chinese population are assessed three years after a screening program. Methods: A total of 647 (39.1%) individuals with pre-diabetes and 1009 (60.9%) individuals with normoglycaemia from a population-based diabetes screening program in 2009 were re-examined in 2012-2013. Changes at the end of 3 years in HRQoL, depression, BMI, weight, frequency of physical activity and vegetable intake were assessed. Results: In men with normoglycaemia the mean (SD) 15D scores were 0.974 (0.04) at baseline and 0.973 (0.05) at follow-up; and 0.971 (0.05) and 0.966 (0.06) for men with pre-diabetes. In women the scores were 0.973 (0.05) and 0.963 (0.06) for normoglycaemia and 0.959 (0.06) and 0.954 (0.07) for pre-diabetes, respectively. Compared to baseline, the HRQoL was slightly lower at 3 years in all groups but the change was not considered to be clinically important, and was only statistically significant for women with normoglycaemia (p < 0.05). The depression score was slightly elevated in women, but not in men. No significant changes in BMI were noticed, but weight increased slightly in the normoglycemia group (p < 0.05). Screening had a significant positive impact on physical activity and vegetable intake. Conclusions: This population-based diabetes screening program generated long-term positive changes toward a healthy lifestyle as measured by physical activity and vegetable intake for all the participants without adverse effects on the HRQoL and depression. [ABSTRACT FROM AUTHOR]

The influence of dialysis modalities on HRQoL before and after kidney transplantation ( KT) and the role of adherence to medication on HRQoL have not been fully studied. Sixty four dialysis patients who answered the 15D HRQoL survey during dialysis were surveyed again after KT. Adherence and employment were also investigated. The mean 15D score was highest among home hemodialysis patients (HHD) and lowest among in-center hemodialysis patients (icHD). After KT, the mean 15D score improved significantly in 78.6% of peritoneal dialysis patients (PD), 47.6% of HHD, and 53.8% of icHD. Then, mean 15D score remained unchanged in 28.6% of HHD and in 23.1% of icHD patients. A deterioration in the 15D score occurred in 14.3% of PD, 23.1% of icHD, and 23.8% of HHD patients, and this was influenced by the number of pills ( P = 0.04). Adherence to medication was the lowest in PD, timing being the most challenging task showing a connection to higher creatinine concentration (never forgot 1.41 mg/ dl vs. forgot 2.08 mg/ dl P = 0.05). Employed patients had a higher mean 15D score. The icHD and PD patients benefited the most from KT and HHD the least. Low pill burden and employment were linked to a better HRQoL. [ABSTRACT FROM AUTHOR]

Few studies compare HRQOL and PSA in children who have undergone different types of solid organ Tx. In this cross-sectional study, HRQOL and PSA were assessed in 74 Tx patients (16 heart, 44 kidney, 14 liver) at a mean age of 11.5 (range 6.3-16.7), 7.2 yr post-Tx (range 1.0-15.0). HRQOL was self-assessed using standardized health utility questionnaires (15D-17D). The patients' PSA was evaluated using the Child Behavior Checklist for parents, Youth Self-Report for patients aged 11-16 yr, and Teacher Report Form. Outcomes did not differ significantly between Tx groups. Preadolescents (8-11 yr) reported poorer HRQOL compared with same-age peers (p = 0.020). In contrast, adolescents reported similar HRQOL and PSA compared to the general population. Proxy-reports revealed more PSA problems compared with age expectations (p < 0.01), mainly in internalizing behavior (p < 0.01). Lower HRQOL was associated with shorter follow-up time since Tx, congenital disease, and a psychiatric or neurological diagnosis. PSA problems were associated with family-related variables, neurological diagnosis, shorter follow-up time, and in teacher-reports longer disease duration before Tx. Different pediatric Tx groups have similar outcome. Neurological comorbidity and shorter follow-up time are important risk factors, but the impact of family-related variables on PSA indicate the need of family interventions. [ABSTRACT FROM AUTHOR]

Objective. We assessed the 10-year effectiveness of self-management guidance in a prospective follow-up study of patients with asthma when inhaled corticosteroids were used from the beginning in the treatment. Methods. Consecutive newly diagnosed asthmatics ( n = 162) were randomized: 80 to an intervention group (IG) and 82 to a control group (CG). Lung function (LF), airway hyperresponsiveness (AHR), and health-related quality of life (HRQoL) were examined at 10 years. Results. The advantages of intensive education with regards to LF measured by forced expiratory volume in 1 second and forced vital capacity were seen only after the first year. Later, there were no statistically significant differences in any parameters between the groups. However, during 10-year follow-up, peak expiratory flow, AHR, and HRQoL improved significantly in both groups (no differences as regards gender, smoking, or atopy). At 10 years, 68% of the IG and 75% of the CG patients still showed AHR after histamine challenge. Generic HRQoL scores in both groups equaled that of the age-standardized group a general population but only 50% in the IG and 55% in the CG had normal disease-specific HRQoL scores. According to Global Initiative for Asthma (GINA) criteria 23% of patients in the IG and 25% in the CG had asthma under control. Conclusions. The effectiveness of intensive self-management education could be shown only in the short term. The groups did not differ significantly in any of the parameters investigated, and showed nearly normal LF and HRQoL. AHR improved only partly and only a minority of the patients had asthma under good control according to GINA criteria. This study showed that evaluation of asthma using LF alone does not show the whole truth about asthma treatment results. HRQoL should be used in conjunction with GINA criteria, to assess asthma treatment outcomes. The value and importance of AHR for the evaluation of treatment remains obscure. [ABSTRACT FROM AUTHOR]

The aim of this prospective randomized study was to evaluate the effect of waiting time (WT) on health-related quality of life (HRQoL), knee pain and physical function, and the use and costs of medication of patients awaiting total knee replacement. When placed on the waiting list, 438 patients were randomized into a short waiting time (SWT ≤ 3 months) or a nonfixed waiting time (NFWT > 3 months) group. HRQoL was measured by the 15D, and pain and physical function by modified Knee Society Clinical Rating System at baseline, admission, and 3 and 12 months postoperatively. The costs of medication due to osteoarthritis were calculated at the same measurement points. All analyses were performed using the intention-to-treat principle. The mean WT was 94 and 239 days in the SWT and NFWT groups, respectively. Apart from higher weekly cost of medication in the SWT group at admission and better HRQoL in the NFWT group 1 year postoperatively, there were no statistically significant differences between the groups in other outcomes during the follow-up. Those in the SWT group had higher weekly costs of medication at admission, and reached better HRQoL 3 months earlier than those in the NFWT group, but the latter had better HRQoL after operation. Otherwise, the length of WT was not associated with different health and HRQoL outcomes in the groups. [ABSTRACT FROM AUTHOR]

Background. The daily treatment of type 1 diabetes with frequent monitoring of blood glucose levels and nuisance caused by insulin administration may affect patients' health-related quality of life (HRQoL). Type 1 diabetes is further burdened with an increased risk of complications which may additionally reduce a patient's HRQoL. We aimed to assess HRQoL and its association with diabetic complications in a large sample of patients with type 1 diabetes. [ABSTRACT FROM PUBLISHER]

Objective. To gain knowledge about the utility of hysterectomy in a real-world setting and to relate the utility of the intervention to its costs. Design. Prospective observational study. Setting. University referral hospital in Helsinki. Population. A total of 337 women entering for routine hysterectomy due to a benign disease (210 benign uterine or ovarian cause, 20 endometriosis, 51 uterovaginal prolapse, 56 menorrhagia). Methods. Patients filled in the 15D health-related quality of life (HRQoL) questionnaire before and six months after the operation. Costs were examined from the perspective of secondary care provider. Benefits of surgery were extrapolated till the end of remaining statistical life expectancy of each woman in the prolapse group and until menopause in the other groups. Main outcome measures. HRQoL and cost per quality-adjusted life year (QALY) gained. Results. Mean [standard deviation (SD)] HRQoL score (on a 0–1 scale) in the whole group improved from the preoperative of 0.905 (0.073) to 0.925 (0.077) six months after the operation ( p < 0.001). The largest mean (SD) improvement was seen in patients with endometriosis [0.048 (0.067)] followed by those with menorrhagia [0.024 (0.054)], benign uterine or ovarian cause [0.018 (0.071)], and prolapse [0.017 (0.055)]. In the whole group, the intervention produced a mean (SD) of 0.222 (1.270) QALYs at mean (SD) direct hospital cost of €3,138 (2,098). Consequently, the cost per QALY gained in the whole group was €14,135 varying from €3,720 to 31,570 in the disease groups. Conclusions. The cost per QALY gained for hysterectomy for benign uterine disorders is strongly dependent on the indication for surgery. [ABSTRACT FROM AUTHOR]

Objective: To examine quality of life after a decade of continuous combined hormone replacement therapy. Study design: The 15D, a generic health-related quality-of-life (HRQoL) instrument, was used to evaluate trends in HRQoL in women who used continuous combined hormone replacement therapy (ccHRT; Indivina®, Orion Pharma, Finland) for up to nine years. These women had a mean age of 56 years of age at the start of therapy. Control data on HRQoL were obtained from age-matched women participating in Finnish population health surveys. Results: Relative to controls, ccHRT was associated with significantly better HRQoL after six and nine years of treatment. Dose minimization at 8.5 years was not associated with a decline in HRQoL in the ensuing six months. One year after discontinuation of ccHRT there was evidence of a decline in HRQoL in women who discontinued ccHRT as planned, whereas HRQoL was maintained in women who had continued or resumed ccHRT during the one-year post-study follow-up. The benefits of ccHRT were apparent in multiple dimensions of the 15D, being largest and most robustly reproduced in the dimension 'discomfort and symptoms'. It is conjectured that the effectiveness of ccHRT in relieving symptoms of menopause may have contributed to the improved HRQoL scores registered in other dimensions, in addition to any direct effects of ccHRT on specific aspects of those other dimensions. Conclusions: These data indicate that up to 10 years of low-dose ccHRT has sustained value in the enhancement of HRQoL when used by women for whom relief of symptoms of menopause and control of bleeding are primary objectives of treatment. [ABSTRACT FROM AUTHOR]

Objective: To estimate the health-related quality of life (HRQoL) of persons with spinal cord lesion. Design: The study design was cross-sectional. Subjects: All adult citizens in Helsinki with traumatic spinal cord lesion were identified. The final study group comprised 117 subjects, corresponding to a participation rate of 77%. Methods: HRQoL was assessed by a generic 15-dimensional self-administered instrument (15D). Clinical examination was based on the manual of the American Spinal Injury Association. Examinations were performed on all subjects by the same experienced physician and physiotherapist. Results: The average 15D score of the study group was significantly lower ( p <0.001) than that measured in the age-matched general population sample. Subjects with spinal cord lesion had significantly more problems due to the neurological lesion but also on the dimensions of sleeping, discomfort and symptoms and vitality. In regression analysis of the study group the only variable explaining HRQoL was the neurological level of the lesion. Spinal cord lesion caused more depression and distress in persons with motor incomplete lesion than those with motor complete lesion. Conclusion: Persons with spinal cord lesion had lower HRQoL than the population in general. The results indicate that spinal cord lesion may cause problems in the areas of sleeping, discomfort and symptoms or vitality, in particular. More attention should be paid to finding ways of improving the situation of persons with motor incomplete lesion, especially in terms of psychological function. [ABSTRACT FROM AUTHOR]

Health-related quality of life (HRQoL) measurement aims to capture the complete, subjective health state of the patients and to comprehensively evaluate treatment outcomes. The aim of this study was to assess, using the 15D HRQoL instrument, HRQoL in a sample of 1528 chronic pain patients, referred to the multidisciplinary pain clinic of the Helsinki University Hospital during 2004 to 2012. The 15D results of the chronic pain patients were compared with those of a matched general population. To analyse the properties of the 15D, the results were compared with the preadmission questionnaire of the pain clinic, containing questions about background factors, aspects of the pain, and its impact on life. The mean 15D score of the chronic pain patients was one of the lowest reported using 15D; 0.710 vs 0.922 in the general population. It equalled the score of advanced cancer patients in palliative care. The 15D scores were normally distributed, and 15D showed both statistically and clinically significant discriminative power in pain-related background factors. Visual analogue scale on pain intensity, visual analogue scale on pain-related distress, and the impact of pain on daily life correlated well with the 15D score. Pain intensity did not have independent predictive value on the score. The results indicate heavy perceived burden of illness in chronic pain patients. In light of the questions analysed, 15D appears sensitive and discriminative in chronic pain patients in tertiary care. Instead of pain intensity, the impaired HRQoL in chronic pain was mainly because of the psychosocial aspects of pain. [ABSTRACT FROM AUTHOR]