| 1. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea
- 2022
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.
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| 2. |
- Aili, Katarina, 1980-, et al.
(författare)
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Health related quality of life and buffering factors in adult survivors of acute pediatric lymphoblastic leukemia and their siblings
- 2021
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Ingår i: Health and Quality of Life Outcomes. - London : BioMed Central. - 1477-7525 .- 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings.METHODS: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed.RESULTS: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy.CONCLUSION: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease. © 2021, The Author(s).
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| 3. |
- Alenius, Sara, et al.
(författare)
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Development and quality assessment of the psychometric properties of the Self-Efficacy in Lifestyle Counselling scale (SELC 20 + 20) using Rasch analysis
- 2024
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central Ltd.. - 1477-7525. ; 22:1, s. 15
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Tidskriftsartikel (refereegranskat)abstract
- Många livsstilssjukdomar kan förebyggas och behandlas genom hälsosammalevnadsvanor. De levnadsvanor som har störst inverkan på hälsan inkluderar matvanor, tobaksbruk, alkoholkonsumtion och fysisk aktivitet. Socialstyrelsen kräver att all vårdpersonal, vid varje vårdmöte, ska erbjuda patienter samtal om deras levnadsvanor, men forskning visar att enbart 30% av alla patienter i Sverige får detta erbjudande. En orsak till detta är att vårdpersonal inte känner sig rustade för samtal om levnadsvanor. Tidigare studier antyder att utbildning om levnadsvanor skulle kunna ge bättre förutsättningar för vårdpersonal och leda till att fler patienter erbjuds samtal om levnadsvanor. Syftet med den här studien var att utveckla ett frågeformulär som mäter tilltro till egen kunskap och förmåga att samtala med patienter om levnadsvanor, samt kvalitetstesta dess mätegenskaper. Grundat på ett redan existerande frågeformulär, nationella riktlinjer och 18 intervjuer medsjuksköterskestudenter, lärare, kliniker och experter inom området levnadsvanor, utvecklades ett frågeformulär. Denna besvarades sedan av 310 sjuksköterskestudenter, och dess mätegenskaper analyserades. Resultatet visar att frågeformuläret är lätt att förstå och har goda mätegenskaper. Det har god reliabilitet för gruppanvändning, svarsalternativen fungerar som förväntat och det finns inga systematiska skillnader i hur frågeformuläret besvaras. Teoretisk kunskap och praktisk förmåga visade sig vara två olika delar, där teoretisk kunskap är en förutsättning för praktisk förmåga att samtala om levnadsvanor. Vår förhoppning är att frågeformuläret i framtiden ska kunna användas i vårdutbildningar och i klinisk verksamhet för att utvärdera utbildningsinsatser kring samtal om levnadsvanor. BACKGROUND: Globally as well as in Sweden, diseases that are caused by unhealthy lifestyle habits are the most common causes of death and disability. Even though there are guidelines that oblige all health-care professionals to counsel patients about lifestyle, studies have shown that it is not prioritized within healthcare. One reason for this among nurses has been shown to be lack of confidence in knowledge and counselling skills. This study aimed to develop, and quality assess the psychometric properties of an instrument to measure self-efficacy in lifestyle counselling. METHODS: An instrument inspired by an American instrument, following Bandura's recommendations for development of self-efficacy measures, was developed according to Swedish national guidelines for disease-prevention. The instrument was revised after cognitive interviews with nursing students, university teachers within health sciences, and clinical experts, then administrated to 310 nursing students at different levels in their education. The instrument was tested with Rasch Measurement Theory, with focus on dimensionality, local dependency, targeting, reliability, response category functioning, Rasch model fit, and differential item functioning by age, gender, educational level and previous health care education. RESULTS: The development of the instrument resulted in 20+20 items, 20 items about self-efficacy in knowledge, and 20 items about self-efficacy in ability to counsel persons about their lifestyle. The analyses showed that knowledge and ability are two different, but related, constructs, where ability is more demanding than knowledge. The findings provide support (considering dimensionality and local dependency) for that all 20 items within the knowledge construct as well as the 20 items within the ability construct can be summed, achieving two separate but related total scores, where knowledge (reliability 0.81) is a prerequisite for ability (reliability 0.84). Items represented lower self-efficacy than reported by the respondents. Response categories functioned as expected, Rasch model fit was acceptable, and there was no differential item functioning. CONCLUSIONS: The SELC 20 + 20 was found to be easy to understand with an acceptable respondent burden and the instrument showed good measurement properties.
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| 4. |
- Anandavadivelan, Poorna, et al.
(författare)
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Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : BMC. - 1477-7525 .- 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundReproductive 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.MethodsThe 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 1.5years 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.ResultsThe 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 Omega total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Omega 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.ConclusionThe 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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| 5. |
- Astrom, M., et al.
(författare)
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EQ-5D-Y-5L as a patient-reported outcome measure in psychiatric inpatient care for children and adolescents - a cross-sectional study
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Psychiatric disorders have a major individual and societal impact. Until now, the association between health-related quality of life and physical disorders has been far more investigated than the association with psychiatric disorders. Patient-reported outcome measures makes it possible to capture the patient perspective to improve treatments and evaluate treatment outcomes. The aim of this study is to measure health-related quality of life with the EQ-5D-Y-5L among patients in child and adolescent psychiatric inpatient care and to test the instrument's psychometric properties in terms of feasibility and construct validity. Methods Data were collected at the child and adolescent psychiatric inpatient facility in Region Stockholm. A questionnaire including the EQ-5D-Y-5L instrument, the Strengths and Difficulties Questionnaire with an impact supplement and a self-rated health question, was administered for self-completion using paper and pencil, with an interviewer present. The Chi-square test was used to investigate differences in proportion of reported problems in the EQ-5D-Y-5L dimensions and the Mann-Whitney U test was used for differences in mean EQ VAS scores. Feasibility was assessed by investigating proportion of missing and ambiguous answers and Spearman's and Pearson's correlation were used to examine construct validity. Results In total 52 adolescents participated in the study and the majority were girls. The most common diagnosis at admission was depressive episode/recurrent depressive disorder. All participants reported problems on at least one dimension. Most problems were reported in the dimension 'feeling worried, sad or unhappy', where 64% reported severe or extreme problems. Mean EQ VAS score was 29.2. Feasibility was supported and construct validity indicated as some of the hypothesised correlations between the EQ-5D-Y-5 L and the Strengths and Difficulties Questionnaire were found, however, for 'doing usual activities' and 'having pain or discomfort' the correlations were weaker than hypothesised. Conclusions This is the first study where the newly developed EQ-5D-Y-5L instrument has been used in psychiatric inpatient care for youth. Participants reported problems in all severity levels in most of the EQ-5D-Y-5L dimensions; mean EQ VAS score was considerably low. Feasibility of the EQ-5D-Y-5L was supported, however other psychometric properties need to be further tested in a larger sample.
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| 6. |
- Baldeh, Tejan, et al.
(författare)
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Development and use of health outcome descriptors : a guideline development case study
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central. - 1477-7525 .- 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 7. |
- Bekes, Katrin, et al.
(författare)
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Pediatric patients' reasons for visiting dentists in all WHO regions
- 2021
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central (BMC). - 1477-7525 .- 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact are the four oral health-related quality of life (OHRQoL) dimensions (4D) or areas in which oral disorders impact pediatric patients. Using their dentists' assessment, the study aimed to evaluate whether pediatric dental patients' oral health concerns fit into the 4D of the Oral Health-Related Quality of Life (OHRQoL) construct.METHODS: Dentists who treat children from 32 countries and all WHO regions were selected from a web-based survey of 1580 international dentists. Dentists were asked if their pediatric patients with current or future oral health concerns fit into the 4D of the Oral Health-Related Quality of Life (OHRQoL) construct. Proportions of all pediatric patients' oral health problems and prevention needs were computed.FINDINGS: Data from 101 dentists treating children only and 523 dentists treating children and adults were included. For 90% of pediatric patients, their current oral health problems fit well in the four OHRQoL dimensions. For 91% of oral health problems they intended to prevent in the future were related to these dimensions as well. Both numbers increased to at least 96% when experts analyzed dentists´ explanations of why some oral health problems would not fit these four categories.CONCLUSIONS: The study revealed the four fundamental components of dental patients, i.e., the four OHRQoL dimensions (Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact) are also applicable for pediatric patients, regardless of whether they have current or future oral health concerns, and should be considered when measuring OHRQoL in the pediatric dental patient population.
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| 8. |
- Bragstad, Line Kildal, et al.
(författare)
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Psychometric properties of a short version of Lee Fatigue Scale used as a generic PROM in persons with stroke or osteoarthritis : assessment using a Rasch analysis approach
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central. - 1477-7525 .- 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Fatigue is a common symptom associated with a wide range of diseases and needs to be more thoroughly studied. To minimise patient burden and to enhance response rates in research studies, patient-reported outcome measures (PROM) need to be as short as possible, without sacrificing reliability and validity. It is also important to have a generic measure that can be used for comparisons across different patient populations. Thus, the aim of this secondary analysis was to evaluate the psychometric properties of the Norwegian 5-item version of the Lee Fatigue Scale (LFS) in two distinct patient populations.METHODS: The sample was obtained from two different Norwegian studies and included patients 4-6 weeks after stroke (n = 322) and patients with osteoarthritis on a waiting list for total knee arthroplasty (n = 203). Fatigue severity was rated by five items from the Norwegian version of the LFS, rating each item on a numeric rating scale from 1 to 10. Rasch analysis was used to evaluate the psychometric properties of the 5-item scale across the two patient samples.RESULTS: Three of the five LFS items ("tired", "fatigued" and "worn out") showed acceptable internal scale validity as they met the set criterion for goodness-of-fit after removal of two items with unacceptable goodness-of-fit to the Rasch model. The 3-item LFS explained 81.6% of the variance, demonstrated acceptable unidimensionality, could separate the fatigue responses into three distinct severity groups and had no differential functioning with regard to disease group. The 3-item version of the LFS had a higher separation index and better internal consistency reliability than the 5-item version.CONCLUSIONS: A 3-item version of the LFS demonstrated acceptable psychometric properties in two distinct samples of patients, suggesting it may be useful as a brief generic measure of fatigue severity.TRIAL REGISTRATION: Clinicaltrials.gov: NCT02338869; registered 10/04/2014 (stroke study).
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| 9. |
- Callus, Edward, et al.
(författare)
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Phenotypes of adults with congenital heart disease around the globe : a cluster analysis.
- 2021
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525 .- 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 10. |
- Danielsson, Louise, 1979, et al.
(författare)
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Measurement properties of the Swedish clinical outcomes in routine evaluation outcome measures (CORE-OM) : Rasch analysis and short version for depressed and anxious out-patients in a multicultural area
- 2022
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Ingår i: Health and Quality of Life Outcomes. - : NLM (Medline). - 1477-7525 .- 1477-7525. ; 20:1, s. 30-
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: The Swedish version of the patient-reported Clinical Outcomes in Routine Evaluation Outcome Measures (CORE-OM) has demonstrated high reliability and acceptable convergent validity in explanatory factor analyses. However, the fundamental scale properties have not yet been validated according to item response theory. The aim of this study was to analyze the measurement properties of the Swedish CORE-OM in a cohort of psychiatric out-patients with depression and anxiety in a multicultural area and to explore combinations of items based on shorter versions of the scale (CORE-10, CORE-6D) to improve measurement properties. METHODS: Data from CORE-OM assessments of 337 patients were analyzed using Rasch analysis. The patients had a mean age of 30 ± 14 years, the majority were women (72%). Requirements for measurement properties were checked: overall model fit, item fit residuals, targeting, internal consistency, differential item functioning and thresholds. Sensitivity to change was also analyzed. RESULTS: The CORE-OM showed high internal consistency (person separation index = 0.947) and adequate targeting, but there was overall model misfit (item trait interaction χ2 = 917.53, p < 0.001), indication of local dependency, and differential item functioning in 9 items. The risk items showed problems with disordered thresholds. The emotional component of the shorter CORE-6D showed the best fit for our sample. Adding 3 items to include depressive and trauma-related content resulted in a unidimensional 8-item set with acceptable reliability, model fit, targeting and sensitivity to change. CONCLUSION: For out-patients with diagnosed depression or anxiety in a multicultural area, the Swedish CORE-OM showed high internal consistency, but also validity problems. Based on the shorter CORE-6D version, a unidimensional 8-item set could be an alternative brief measure of psychological distress for this population, but further validity studies are required. Qualitative studies exploring the CORE-OM items in non-native speakers are also warranted. © 2022. The Author(s).
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