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  • 1. Anandavadivelan, Poorna
    et al.
    Wiklander, Maria
    Eriksson, Lars E.
    Wettergren, Lena
    Lampic, Claudia
    Department of Women’s and Children’s Health, Karolinska Institutet, Solna, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale2020Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 18, nr 1, artikel-id 273Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer.

    METHODS: The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity.

    RESULTS: The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (- 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children.

    CONCLUSION: The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.

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  • 2. Baldeh, Tejan
    et al.
    Saz-Parkinson, Zuleika
    Muti, Paola
    Santesso, Nancy
    Morgano, Gian Paolo
    Wiercioch, Wojtek
    Nieuwlaat, Robby
    Gräwingholt, Axel
    Broeders, Mireille
    Duffy, Stephen
    Hofvind, Solveig
    Nyström, Lennarth
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. European Commission Initiative on Breast Cancer Guidelines Development Group, European Commission, JRC, Ispra, Italy.
    Ioannidou-Mouzaka, Lydia
    Warman, Sue
    McGarrigle, Helen
    Knox, Susan
    Fitzpatrick, Patricia
    Rossi, Paolo Giorgi
    Quinn, Cecily
    Borisch, Bettina
    Lebeau, Annette
    de Wolf, Chris
    Langendam, Miranda
    Piggott, Thomas
    Giordano, Livia
    Van Landsveld-Verhoeven, Cary
    Bernier, Jacques
    Rabe, Peter
    Schunemann, Holger J.
    Development and use of health outcome descriptors: a guideline development case study2020Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 18, nr 1, artikel-id 167Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: During healthcare guideline development, panel members often have implicit, different definitions of health outcomes that can lead to misunderstandings about how important these outcomes are and how to balance benefits and harms. McMaster GRADE Centre researchers developed ‘health outcome descriptors’ for standardizing descriptions of health outcomes and overcoming these problems to support the European Commission Initiative on Breast Cancer (ECIBC) Guideline Development Group (GDG). We aimed to determine which aspects of the development, content, and use of health outcome descriptors were valuable to guideline developers.

    Methods: We developed 24 health outcome descriptors related to breast cancer screening and diagnosis for the European Commission Breast Guideline Development Group (GDG). Eighteen GDG members provided feedback in written format or in interviews. We then evaluated the process and conducted two health utility rating surveys.

    Results: Feedback from GDG members revealed that health outcome descriptors are probably useful for developing recommendations and improving transparency of guideline methods. Time commitment, methodology training, and need for multidisciplinary expertise throughout development were considered important determinants of the process. Comparison of the two health utility surveys showed a decrease in standard deviation in the second survey across 21 (88%) of the outcomes.

    Conclusions: Health outcome descriptors are feasible and should be developed prior to the outcome prioritization step in the guideline development process. Guideline developers should involve a subgroup of multidisciplinary experts in all stages of development and ensure all guideline panel members are trained in guideline methodology that includes understanding the importance of defining and understanding the outcomes of interest.

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  • 3. Callus, Edward
    et al.
    Pagliuca, Silvana
    Boveri, Sara
    Ambrogi, Federico
    Luyckx, Koen
    Kovacs, Adrienne H.
    Apers, Silke
    Budts, Werner
    Enomoto, Junko
    Sluman, Maayke A.
    Wang, Jou-Kou
    Jackson, Jamie L.
    Khairy, Paul
    Cook, Stephen C.
    Chidambarathanu, Shanthi
    Alday, Luis
    Eriksen, Katrine
    Dellborg, Mikael
    Berghammer, Malin
    Johansson, Bengt
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Avdelningen för medicin.
    Mackie, Andrew S.
    Menahem, Samuel
    Caruana, Maryanne
    Veldtman, Gruschen
    Soufi, Alexandra
    Fernandes, Susan M.
    White, Kamila
    Kutty, Shelby
    Moons, Philip
    Phenotypes of adults with congenital heart disease around the globe: a cluster analysis2021Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 19, nr 1, artikel-id 53Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL).

    METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL.

    RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities.

    CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.

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  • 4.
    Eriksson, Irene
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Geriatrik.
    Gustafson, Yngve
    Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Geriatrik.
    Fagerström, Lisbeth
    Olofsson, Birgitta
    Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Geriatrik.
    Do urinary tract infections affect morale among very old women?2010Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 8, s. 73-Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    As UTI seems to be independently associated with low morale or poor subjective wellbeing, there needs to be more focus on prevention, diagnosis and treatment of UTI in old women.

  • 5. Fröjd, Camilla
    et al.
    Larsson, Gunnel
    Lampic, Claudia
    Department of Public Health and Caring Sciences, Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Caring Sciences and Sociology, Gävle University, Sweden.
    von Essen, Louise
    Health related quality of life and psychosocial function among patients with carcinoid tumours. A longitudinal, prospective, and comparative study2007Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 5, artikel-id 18Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis.

    METHODS: At four assessments during the first year after diagnosis, HRQoL was measured by the EORTC QLQ-C30 3.0, anxiety and depression by the HADS, and prevalence, and worst aspects of distress by an interview guide. ANOVA was performed in order to study changes over time with regard to HRQoL, anxiety and depression. Comparisons regarding HRQoL between patients and the Swedish population were made by the use of one-sample t-tests and changes over time regarding the prevalence of distress was investigated by means of Cochran's Q.

    RESULTS: High levels of physical-, emotional-, cognitive-, and social function and somewhat lower levels of role function and global quality of life were reported at all assessments. Role- and emotional function increased over time. Patients reported lower role function and global quality of life and more problems with fatigue and diarrhoea than the Swedish general population, at all assessments. Fatigue, limitations to work and pursue daily activities, and worry that the illness will get worse were among the most prevalent aspects at all assessments. At all assessments the majority reported worrying about the family's situation, the ability to care for the family, and worrying before the check-up.

    CONCLUSION: It is concluded that HRQoL and psychosocial function among patients with carcinoid tumours remains stable during the first year, that the patients report a lower HRQoL than the Swedish general population, and that a majority of the patients report a number of aspects of emotional distress. In the clinical care, it should be considered that the majority of patients report not only fatigue and diarrhoea but also worries about their prognosis, their families, tests, and examinations. Efforts to reduce these worries should be made.

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  • 6.
    Geale, Kirk
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Dermatologi och venereologi. PAREXEL Int, Stockholm, Sweden.
    Henriksson, Martin
    Linköping Univ, Dept Med & Hlth Sci, Linköping, Sweden.
    Schmitt-Egenolf, Marcus
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Dermatologi och venereologi.
    How is disease severity associated with quality of life in psoriasis patients?: Evidence from a longitudinal population-based study in Sweden2017Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 15, nr 1, artikel-id 151Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Assessing the impact of disease severity on generic quality of life (QOL) is a critical step in outcomes research and in the development of decision-analytic models structured around health states defined by clinical measures. While data from routine clinical practice found in healthcare registers are increasingly used for research, more attention should be paid to understanding the relationship between clinical measures of disease severity and QOL. The purpose of this work was therefore to investigate this relationship in psoriasis using a population-based dataset.

    METHODS: Severity was measured by the Psoriasis Area and Severity Index (PASI), which combines severity of erythema, induration, and desquamation into a single value ranging from 0 to 72. The generic EQ-5D-3L utility instrument, under the UK tariff, was used to measure QOL. The association between PASI and EQ-5D-3L was estimated using a population-based dataset of 2674 patients with moderate to severe psoriasis enrolled over ten years in the Swedish psoriasis register (PsoReg). Given the repeated measurement of patients in the register data, a longitudinal fixed-effects model was employed to control for unobserved patient-level heterogeneity.

    RESULTS: Marginal changes in PASI are associated with a non-linear response in EQ-5D-3L: Moving from PASI 10 to 9 (1 to 0) is associated with an increase of 0.0135 (0.0174) in EQ-5D-3L. Furthermore, unobserved patient-level heterogeneity appears to be an important source of confounding when estimating the relationship between QOL and PASI.

    CONCLUSIONS: Using register data to estimate the impact of disease severity on QOL while controlling for unobserved patient-level heterogeneity shows that PASI appears to have a larger impact on QOL than previously estimated. Routine collection of generic QOL data in registers should be encouraged to enable similar applications in other disease areas.

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  • 7.
    Ghatnekar, Ola
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Medicin.
    Eriksson, Marie
    Umeå universitet, Samhällsvetenskapliga fakulteten, Handelshögskolan vid Umeå universitet, Statistik.
    Glader, Eva-Lotta
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Medicin.
    Mapping health outcome measures from a stroke registry to EQ-5D weights2013Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 11, nr 34Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: To map health outcome related variables from a national register, not part of any validated instrument, with EQ-5D weights among stroke patients.

    Methods: We used two cross-sectional data sets including patient characteristics, outcome variables and EQ-5D weights from the national Swedish stroke register. Three regression techniques were used on the estimation set (n = 272): ordinary least squares (OLS), Tobit, and censored least absolute deviation (CLAD). The regression coefficients for “dressing“, “toileting“, “mobility”, “mood”, “general health” and “proxy-responders” were applied to the validation set (n = 272), and the performance was analysed with mean absolute error (MAE) and mean square error (MSE).

    Results: The number of statistically significant coefficients varied by model, but all models generated consistent coefficients in terms of sign. Mean utility was underestimated in all models (least in OLS) and with lower variation (least in OLS) compared to the observed. The maximum attainable EQ-5D weight ranged from 0.90 (OLS) to 1.00 (Tobit and CLAD). Health states with utility weights <0.5 had greater errors than those with weights ≥0.5 (P < 0.01).

    Conclusion: This study indicates that it is possible to map non-validated health outcome measures from a stroke register into preference-based utilities to study the development of stroke care over time, and to compare with other conditions in terms of utility.

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  • 8. Gojlo, Marek K.
    et al.
    Paradowski, Przemyslaw T.
    Umeå universitet, Medicinska fakulteten, Institutionen för kirurgisk och perioperativ vetenskap, Ortopedi. Department of Orthopaedics and Traumatology, Faculty of Health Sciences, Ludwik Rydygier Collegium Medicum, Nicolaus Copernicus University inToruń, Jan Biziel University Hospital, Bydgoszcz, Poland; Clinical Epidemiology Unit, Orthopaedics, Department of Clinical Sciences, Lund University, Lund, Sweden.
    Polish adaptation and validation of the hip disability and osteoarthritis outcome score (HOOS) in osteoarthritis patients undergoing total hip replacement2020Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 18, nr 1, artikel-id 135Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: The Hip disability and Osteoarthritis Outcome Score (HOOS) is a frequently used patient-reported outcome measure (PROM) for assessment of hip disorders and treatment effects following hip surgery. The objective of the study was to translate and adapt the Hip disability and Osteoarthritis Outcome Score (HOOS) into Polish and to investigate the psychometric properties of the HOOS in patients with osteoarthritis undergoing total hip replacement (THR).

    Materials and methods: The Polish version of the HOOS was developed according to current guidelines. Patients completed the HOOS, Short Form 36 Health Survey (SF-36), the visual analogue scale (VAS) for pain and the global perceived effect (GPE) scale. Psychometric properties including interpretability (floor/ceiling effects), internal consistency (Cronbach's alpha), test-retest reliability (intra-class correlation coefficient, ICC), convergent construct validity (a priori hypothesized Spearman's correlations between the HOOS subscales, the generic SF-36 measure and the VAS for pain) and responsiveness (effect size, association between the HOOS and GPE scores) were analyzed.

    Results: The study included 157 patients (mean age 66.8years, 54% women). Floor effects were found prior to THR for the HOOS subscales Sports and Recreation and Quality of Life. The Cronbach's alpha was over 0.7 for all subscales indicating satisfactory internal consistency. The test-retest reliability was good for the HOOS subscale Pain (0.82) and excellent for all other subscales with ICCs ranging from 0.91 to 0.96. The minimal detectable change ranged from 12.0 to 26.2 on an individual level and from 1.4 to 3.0 on a group level. Seven out of eight a priori hypotheses were confirmed indicating good construct validity. Responsiveness was high since the expected pattern of effect sizes in all subscales was found.

    Conclusions: The Polish version of the HOOS demonstrated good reliability, validity and responsiveness for use in patient groups having THR.

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  • 9.
    Henje Blom, Eva
    et al.
    Karolinska Institutet.
    Bech, Per
    Högberg, Göran
    Larsson, Jan Olov
    Serlachius, Eva
    Screening for depressed mood in an adolescent psychiatric context by brief self-assessment scales--testing psychometric validity of WHO-5 and BDI-6 indices by latent trait analyses.2012Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 10, artikel-id 149Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Major depressive disorder is prevalent in the adolescent psychiatric clinical setting and often comorbid with other primary psychiatric diagnoses such as ADHD or social anxiety disorder. Systematic manual-based diagnostic procedures are recommended to identify such comorbidity but they are time-consuming and often not fully implemented in clinical practice. Screening for depressive symptoms in the child psychiatric context using brief, user-friendly and easily managed self-assessment scales may be of clinical value and utility. The aim of the study is to test the psychometric validity of two such scales, which may be used in a two-step screening procedure, the WHO-Five Well-being Index (WHO-5) and the six-item version of Beck's Depression Inventory (BDI-6).

    METHOD: 66 adolescent psychiatric patients with a clinical diagnosis of major depressive disorder (MDD), 60 girls and 6 boys, aged 14-18 years, mean age 16.8 years, completed the WHO-5 scale as well as the BDI-6. Statistical validity was tested by Mokken and Rasch analyses.

    RESULTS: The correlation between WHO-5 and BDI-6 was -0.49 (p=0.0001). Mokken analyses showed a coefficient of homogeneity for the WHO-5 of 0.52 and for the BDI-6 of 0.46. Rasch analysis also accepted unidimensionality when testing males versus females (p > 0.05).

    CONCLUSIONS: The WHO-5 is psychometrically valid in an adolescent psychiatric context including both genders to assess the wellness dimension and applicable as a first step in screening for MDD. The BDI-6 may be recommended as a second step in the screening procedure, since it is statistically valid and has the ability to unidimensionally capture the severity of depressed mood.

  • 10.
    Henje Blom, Eva
    et al.
    Karolinska Institutet, University of California San Francsisco.
    Serlachius, Eva
    Larsson, Jan-Olov
    Theorell, Töres
    Ingvar, Martin
    Low Sense of Coherence (SOC) is a mirror of general anxiety and persistent depressive symptoms in adolescent girls - a cross-sectional study of a clinical and a non-clinical cohort.2010Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 8, artikel-id 58Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The Sense of Coherence (SOC) scale is assumed to measure a distinct salutogenic construct separated from measures of anxiety and depression. Our aim was to challenge this concept.

    METHODS: The SOC-scale, Beck's Depression Inventory (BDI), Beck's Anxiety Inventory (BAI) , the emotional subscale of the Strengths and Difficulties Questionnaire (SDQ-em) and self-assessed health-related and physiological parameters were collected from a sample of non-clinical adolescent females (n = 66, mean age 16.5 years with a range of 15.9-17.7 years) and from female psychiatric patients (n = 73), mean age 16.8 years with a range of 14.5-18.4 years), with diagnoses of major depressive disorders (MDD) and anxiety disorders.

    RESULTS: The SOC scores showed high inverse correlations to BDI, BAI and SDQ-em. In the non-clinical sample the correlation coefficient was -0.86 to -0.73 and in the clinical samples -0.74 to -0.53 (p < 0.001). Multiple regression models showed that BDI was the strongest predictor of SOC in the non-clinical (beta coefficient -0.47) and clinical sample (beta coefficient -0.52). The total degree of explanation of self assessed anxiety and depression on the SOC variance estimated by multiple R2 = 0.74, adjusted R2 = 0.73 in the non-clinical sample and multiple R2 = 0.66, adjusted R2 = 0.65 in the clinical sample.Multivariate analyses failed to isolate SOC as a separate construct and the SOC-scale, BDI, BAI and SDQ-em showed similar patterns of correlations to self-reported and physiological health parameters in both samples. The SOC-scale was the most stable measure over six months.

    CONCLUSIONS: The SOC-scale did not appear to be a measure of a distinct salutogenic construct, but an inverse measure of persistent depressive symptoms and generalized social anxiety similar to the diagnostic criteria for major depressive disorder (MDD), dysthymic disorder, generalized anxiety disorder (GAD) or generalized social anxiety disorder (SAD) according to DSM-IV. These symptoms were better captured with SOC than by the specialized scales for anxiety and depression. Self-assessment scales that adequately identify MDD, dysthymic disorder, GAD and SAD need to be implemented. Comorbidity of these disorders is common in adolescent females and corresponds to a more severe symptomatology and impaired global function.

  • 11.
    Lindkvist, Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa. Umeå universitet, Samhällsvetenskapliga fakulteten, Handelshögskolan vid Umeå universitet, Statistik.
    Feldman, Inna
    Assessing outcomes for cost-utility analysis in mental health interventions: mapping mental health specific outcome measure GHQ-12 onto EQ-5D-3L2016Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 14, artikel-id 134Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Many intervention-based studies aiming to improve mental health do not include a multi-attribute utility instrument (MAUI) that produces quality-adjusted life-years (QALYs) and it limits the applicability of the health economic analyses. This study aims to develop 'crosswalk' transformation algorithm between a measure for psychological distress General Health Questionnaire (GHQ-12) and MAUI EuroQoL (EQ-5D-3L). Methods: The study is based on a survey questionnaire sent to a random sample in four counties in Sweden in 2012. The survey included GHQ-12 and EQ-5D instruments, as well as a question about self-rated health. The EQ-5D index was calculated using the UK and the Swedish tariff values. Two OLS models were used to estimate the EQ-5D health state values using the GHQ-12 as exposure, based on the respondents (n = 17, 101) of two counties. The algorithms were applied to the data from two other counties, (n = 15, 447) to check the predictive capacity of the models. Results: The final models included gender, age, self-rated health and GHQ-12 scores as a quantitative variable. The regression equations explained 40 % (UK tariff) and 46 % (Swedish tariff) of the variances. The model showed a satisfying predictive capacity between the observed and the predicted EQ-5D index score, with Pearson correlation = 0.65 and 0.69 for the UK and Swedish models, respectively. Conclusion: The algorithms developed in this study can be used to determine cost-effectiveness of services or interventions that use GHQ-12 as a primary outcome where the utility measures are not collected.

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  • 12.
    Lindvall, Kristina
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Vaezghasemi, Masoud
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Feldman, Inna
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Stevens, Katherine J.
    School of Health and Related Research, The University of Sheffield, Sheffield, United Kingdom.
    Petersen, Solveig
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Feasibility, reliability and validity of the health-related quality of life instrument Child Health Utility 9D (CHU9D) among school-aged children and adolescents in Sweden2021Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 19, nr 1, artikel-id 193Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: This study was conducted in a general population of schoolchildren in Sweden, with the aim to assess the psychometric properties of a generic preference-based health related quality of life (HRQoL) instrument, the Swedish Child Health Utility 9D (CHU9D), among schoolchildren aged 7–15 years, and in subgroups aged 7–9, 10–12 and 13–15 years.

    Methods: In total, 486 school aged children, aged 7–15 years, completed a questionnaire including the CHU9D, the Pediatric quality of life inventory 4.0 (PedsQL), KIDSCREEN-10, questions on general health, long-term illness, and sociodemographic characteristics. Psychometric testing was undertaken of feasibility, internal consistency reliability, test–retest reliability, construct validity, factorial validity, concurrent validity, convergent validity and divergent validity.

    Results: The CHU9D evidenced very few missing values, minimal ceiling, and no floor effects. The instrument achieved satisfactory internal consistency (Cronbach’s Alfa > 0.7) and strong test–retest reliability (r > 0.6). Confirmatory factor analyses supported the proposed one-factor structure of the CHU9D. For child algorithm, RMSEA = 0.05, CFI = 0.95, TLI = 0.94, and SRMR = 0.04. For adult algorithm RMSEA = 0.04, CFI = 0.96, TLI = 0.95, and SRMR = 0.04. The CHU9D utility value correlated moderately or strongly with KIDSCREEN-10 and PedsQL total scores (r > 0.5–0.7). The CHU9D discriminated as anticipated on health and on three of five sociodemographic characteristics (sex, age, and custody arrangement, but not socioeconomic status and ethnic origin).

    Conclusions: This study provides evidence that the Swedish CHU9D is a feasible, reliable and valid measure of preference-based HRQoL in children. The study furthermore suggests that the CHU9D is appropriate for use among children 7–15 years of age in the general population, as well as among subgroups aged 7– 9, 10–12 and 13–15 years.

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  • 13. Magnusson, Peter
    et al.
    Mörner, Stellan
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Kardiologi.
    Gadler, Fredrik
    Karlsson, Jan
    Health-related quality of life in hypertrophic cardiomyopathy patients with implantable defibrillators2016Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 14, artikel-id 62Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Health-related quality of life (HRQL) in hypertrophic cardiomyopathy (HCM) patients with implantable cardioverter-defibrillators (ICDs) is largely unknown. The aim was to assess HRQL, including comparisons between groups, using the questionnaire SF-36, and compare it to a Swedish age-and sex-matched population. Methods and Results: Validated data on adult HCM patients with ICDs were used. The SF-36 response rate was 82.5 % and 245 patients (mean age 55.9 years, 70.2 % men) were analyzed using the Mann-Whitney U-test, t-test, Spearman correlation and effect size calculations. In all SF-36 domains the patients' score was lower (p-value of <0.0001) than norms except for bodily pain. The general health domain showed the highest effect size (0.77) and the impact was more pronounced in the SF-36 physical component summary score (0.62) than the mental component summary score (0.46). Older age was correlated with lower scores on the physical component and higher scores on the mental component. Atrial fibrillation and/or systolic heart failure were associated with worse physical health. HRQL was similar in primary vs secondary prevention cases. Inappropriate ICD shock was associated with worse mental health while appropriate therapy trended toward better mental health. Conclusion: HCM patients with ICDs suffer from poor HRQL regardless of age, sex, or primary vs secondary prevention indication. Atrial fibrillation and systolic heart failure are determinants of poor physical health. Inappropriate shocks, but not appropriate therapies, are associated with poorer mental health.

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  • 14.
    Neumann, Anne
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa. Cancer Epidemiology, University Cancer Center, University Hospital.
    Schoffer, Olaf
    Cancer Epidemiology, University Cancer Center, University Hospital.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Norberg, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Klug, Stefanie J
    Cancer Epidemiology, University Cancer Center, University Hospital.
    Lindholm, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Health-related quality of life for pre-diabetic states and type 2 diabetes mellitus: a cross-sectional study in Västerbotten Sweden2014Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, nr 1, artikel-id 150Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Type 2 diabetes (T2D) decreases health-related quality of life, but there is a lack of information about the health status of people in pre-diabetic states. However, information on health utility weights (HUWs) for pre-diabetic states and T2D are essential to estimate the effect of prevention initiatives. We estimated and compared HUWs for healthy individuals, those with pre-diabetes and those with T2D in a Swedish population and evaluated the influence of age, sex, education and body mass index on HUWs.

    Methods: Participants of the Västerbotten Intervention Program, Sweden, between 2002 and 2012, who underwent an oral glucose tolerance test or indicated they had T2D and who filled in the Short Form-36 questionnaire (SF-36) were included. Individuals were categorized as healthy, being in any of three different pre-diabetic states, or as T2D. The pre-diabetic states are impaired fasting glucose (IFG), impaired glucose tolerance (IGT) or a combination of both (IFG&IGT). The SF-6D index was used to convert SF-36 responses to HUWs. HUWswere stratified by age, sex, education and body mass index. Beta regression analyses were conducted to estimate the effect of multiple risk factors on the HUWs.

    Results: In total, 55 882 individuals were included in the analysis. The overall mean HUW was 0.764. The mean HUW of healthy individuals was 0.768, 0.759 for those with IFG, 0.746 for those with IGT, 0.745 for those with IFG&IGT, and 0.738 for those with T2D. In the overall model, all variables except underweight vs. normal weight were significantly associated with HUW. Younger age, male sex, and higher education were associated with increased HUW. Normal weight, or being overweight was associated with elevated HUW, while obesity was associated with lower HUW.

    Conclusions: Healthy individuals had higher HUWs than participants with T2D, while individuals with IFG, IGT or IFG&IGT had HUWs that ranged between those for NGT and T2D. Therefore, preventing the development of pre-diabetic states would improve health-related quality of life in addition to lowering the risk of developing T2D.

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  • 15.
    Nordyke, Katrina
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Rosén, Anna
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Emmelin, Maria
    Lund University.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Internalizing the threat of risk: a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis2014Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, artikel-id 91Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [en]

    BACKGROUND: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved.

    METHODS: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis.

    RESULTS: The overall theme - "Internalizing the threat of risk" - illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. "continuing to fear it is "all in vain".

    CONCLUSIONS: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.

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  • 16. Ståhl, Elisabeth
    et al.
    Lindberg, Anne
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Lungmedicin.
    Jansson, Sven-Arne
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Yrkes- och miljömedicin.
    Rönmark, Eva
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Yrkes- och miljömedicin.
    Svensson, Klas
    Andersson, Fredrik
    Löfdahl, Claes-Göran
    Lundbäck, Bo
    Health-related quality of life is related to COPD disease severity.2005Ingår i: Health and Quality of Life Outcomes, E-ISSN 1477-7525, Vol. 3, s. 56-Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The aim of this study was to evaluate the association between health-related quality of life (HRQL) and disease severity using lung function measures. METHODS: A survey was performed in subjects with COPD in Sweden. 168 subjects (70 women, mean age 64.3 years) completed the generic HRQL questionnaire, the Short Form 36 (SF-36), the disease-specific HRQL questionnaire; the St George's Respiratory Questionnaire (SGRQ), and the utility measure, the EQ-5D. The subjects were divided into four severity groups according to FEV1 per cent of predicted normal using two clinical guidelines: GOLD and BTS. Age, gender, smoking status and socio-economic group were regarded as confounders. RESULTS: The COPD severity grades affected the SGRQ Total scores, varying from 25 to 53 (GOLD p = 0.0005) and from 25 to 45 (BTS p = 0.0023). The scores for SF-36 Physical were significantly associated with COPD severity (GOLD p = 0.0059, BTS p = 0.032). No significant association were noticed for the SF-36, Mental Component Summary scores and COPD severity. Scores for EQ-5D VAS varied from 73 to 37 (GOLD I-IV p = 0.0001) and from 73 to 50 (BTS 0-III p = 0.0007). The SGRQ Total score was significant between age groups (p = 0.0047). No significant differences in HRQL with regard to gender, smoking status or socio-economic group were noticed. CONCLUSION: The results show that HRQL in COPD deteriorates with disease severity and with age. These data show a relationship between HRQL and disease severity obtained by lung function.

  • 17.
    Sun, Sun
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. Research Group Health Outcomes and Economic Evaluation, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Chuang, Ling-Hsiang
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Sahlen, Klas-Göran
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Lindholm, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Estimating a social value set for EQ-5D-5L in Sweden2022Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 20, nr 1, artikel-id 167Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: The study aims to elicit a value set based on the EQ-VT for the EQ-5D-5L that can be used to support decision-making in Sweden.

    Methods: Participants were recruited from the general population based on age, sex and urban/rural area quota sampling from five regions across Sweden. In total, 785 interviews were conducted from February 2020 to April 2021 using the EQVT 2.1 protocol, and both composite time trade-off (c-TTO) and discrete choice experiments (DCE) were used to elicit health preferences. A variety of models have been tested for the c-TTO data (generalized least square, Tobit, heteroskedastic models) and DCE data (conditional logit model), as well as the combined c-TTO and DCE data (hybrid modelling). Model selection was based on theoretical considerations, logical consistency of the parameter estimates, and significance of the parameters (p = 0.05). Model goodness-of-fit was assessed by AIC and BIC, and prediction accuracy was assessed in terms of mean absolute error. The predictions for the EQ-5D-5L health states between models were compared using scatterplots.

    Results: The preferred model for generating the value set was the heteroskedastic model based on the c-TTO data, with the health utilities ranging from -0.31 for the worst (55,555) to 1 for the best (11111) EQ-5D-5L states.

    Conclusion: This is the first c-TTO-based social value set for the EQ-5D-5L in Sweden. It can be used to support the health utility estimation in economic evaluations for reimbursement decision making in Sweden.

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  • 18.
    Yang, Zhihao
    et al.
    Health Services Management Department, Guizhou Medical University, Gui’an, China; Center of Medicine Economics and Management Research, Guizhou Medical University, Gui’an, China.
    Zeng, Xueyun
    Shanghai Chest Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China; School of Health Management, Harbin Medical University, Harbin, China.
    Huang, Weidong
    School of Health Management, Harbin Medical University, Harbin, China.
    Chai, Qingqing
    Department of Pharmacy, School of Medicine, Huangpu Branch, Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University, Shanghai, China.
    Zhao, Angela
    Analysis Group, MA, Boston, United States.
    Chuang, Ling-Hsiang
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. GongJing Healthcare (Nanjing) Co. Ltd, Nanjing, China.
    Wu, Bin
    School of Medicine, Ren Ji Hospital, Shanghai Jiao Tong University, Shanghai, China.
    Luo, Nan
    Saw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore.
    Characteristics of health-state utilities used in cost-effectiveness analyses: a systematic review of published studies in Asia2023Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 21, nr 1, artikel-id 59Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Introduction: Cost-utility analysis (CUA) is the preferred form of economic evaluation in many countries. As one of the key data inputs in cost-utility models, health state utility (HSU) has a crucial impact on CUA results. In the past decades, health technology assessment has been expanding rapidly in Asia, yet research examining the methodology and process used to generate cost-effectiveness evidence is scarce. The aim of this study was to examine the reporting of the characteristics of HSU data used in CUAs in Asia and how the characteristics have changed over time.

    Methods: A systematic literature search was performed to identify published CUA studies targeting Asian populations. Information was extracted for both the general characteristics of selected studies and the characteristics of reported HSU data. For each HSU value identified, we extracted data for four key characteristics, including 1) estimation method; 2) source of health-related quality of life (HRQoL) data; 3) source of preference data; and 4) sample size. The percentage of nonreporting was calculated and compared over two time periods (1990–2010 vs 2011–2020).

    Results: A total of 789 studies were included and 4,052 HSUs were identified. Of these HSUs, 3,351 (82.7%) were from published literature and 656 (16.2%) were from unpublished empirical data. Overall, the characteristics of HSU data were not reported in more than 80% of the studies. Of HSUs whose characteristics were reported, most of them were estimated using the EQ-5D (55.7%), Asian HRQoL data (91.9%), and Asian health preferences (87.7%); 45.7% of the HSUs was estimated with a sample of 100 or more individuals. All four characteristics showed improvements after 2010.

    Conclusion: Over the past two decades, there has been a significant increase in CUA studies targeting Asian populations. However, HSU’s characteristics were not reported in most of the CUA studies, making it difficult to evaluate the quality and appropriateness of the HSUs used in those cost-effectiveness studies.

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  • 19.
    Zashikhina, Anna
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Barn- och ungdomspsykiatri.
    Hägglöf, Bruno
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Barn- och ungdomspsykiatri.
    Health-related quality of life in adolescents with chronic physical illness in northern Russia: a cross-sectional study.2014Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, nr 1, s. 12-Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Health related quality of life (HRQoL) is an important subjectively evaluated outcome of adolescents physical, mental, and social functioning. It gives us the possibility to assess the disease impact on life of adolescents, and to sort out target groups of adolescents for future psychological interventions. The objective of this cross-sectional survey was to study HRQoL in 173 adolescents with chronic physical illness (CPI - diabetes, asthma, and epilepsy), and to find HRQoL predictors in each disease group.

    METHODS: Disease-specific questionnaires were completed by each adolescent recruited from the local outpatient clinic; mothers answered the questions on socioeconomic status (SES); and the patients' clinicians evaluated the severity of the disease.

    RESULTS: A high proportion of adolescents in each disease specific sample reported moderate to high levels of HRQoL. Gender was the most prominent predictor of HRQoL in all three studied groups, while disease severity predicted HRQoL in the diabetic group and to some extent in the asthma group.

    CONCLUSIONS: Our results provide evidence that adolescents with diabetes, asthma, and epilepsy in northern Russia maintain relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES). Our study suggests that future psychosocial interventions should focus on aspects of CPI impacting adolescents in gendered ways, furthermore taking into account disease specific factors.

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