| 1. |
- Algurén, Beatrix, et al.
(författare)
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A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales
- 2020
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer. - 2509-8020. ; 4:1
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Forskningsöversikt (refereegranskat)abstract
- BACKGROUND: Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use or research is challenging because multimorbidity is often common in patients. The aim was therefore to provide an overview of heart-disease specific PROMs and to compare the content of those outcomes using a bio-psycho-social framework of health.METHODS: A scoping review of heart disease-specific PROMs, including arrhythmia/atrial fibrillation, congenital heart disease, heart failure, ischemic heart disease, and valve diseases was conducted in PubMed (January 2018). All items contained in the disease-specific PROMs were mapped to WHO's International Classification of Functioning, Disability and Health (ICF) according to standardized linking rules.RESULTS: A total of 34 PROMs (heart diseases in general n = 5; cardiac arrhythmia n = 6; heart failure n = 14; ischemic heart disease n = 9) and 147 ICF categories were identified. ICF categories covered Body functions (n = 61), Activities & Participation (n = 69), and Environmental factors (n = 17). Most items were about experienced problems of Body functions and less often about patients' daily activities, and most PROMs were specifically developed for heart failure and no PROM were identified for valve disease or congenital heart disease.CONCLUSIONS: Our results motivate and provide information to develop comprehensive PROMs that consider activity and participation by patients with various types of heart disease.
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| 2. |
- Bini, Christina, et al.
(författare)
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How patients with insomnia interpret and respond to the consensus sleep diary : a cognitive interview study
- 2024
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective/BackgroundThe Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is needed. The aim of the study was to evaluate a Swedish translation of the CSD regarding test content and response processes in patients with insomnia.Patients/MethodsIn connection with translating the CSD into Swedish, we used cognitive interviewing to evaluate test content and the response process, that is, how people make decisions when responding to survey items. Cognitive interviews were conducted with 13 primary health care patients with insomnia disorder (mean age, 49 years; SD 15.5). Iterative, reparative analysis was used to investigate test content. Descriptive deductive analysis was used to investigate interview transcripts for the themes of the cognitive model: comprehension, retrieval, decision process, and judgement. Together, the themes explain the response process when responding to a patient-reported outcome measure.ResultsThe overall comprehension of the CSD could be affected by poor adherence to the instructions (comprehension). Patients had difficulty with recall if they did not complete the diary immediately in the morning and just before bedtime (retrieval). They could have problems deciding how to respond to certain items because they imbued sleep-related concepts with extra meaning (decision process), and had trouble finding response alternatives nuanced enough to describe their experience of sleep and tiredness (judgement).ConclusionsThis study contributes knowledge on how the instrument is perceived and used by care-seeking patients with insomnia. In this context, the CSD exhibits known flaws such as memory lapses if the diary is not filled in directly in the morning. To increase the accuracy of patients' responses, therapists should support patients in reading the instructions.
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| 3. |
- Blomqvist, Ida, et al.
(författare)
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Swedish translation and cross-cultural adaptation of eight pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)(R)
- 2021
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- Background This study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight pediatric Patient-Reported Outcomes Measurement Information System (PROMIS(R)) item banks (anger, anxiety, depressive symptoms, family relationships, fatigue, pain interference, peer relationships and physical activity) into Swedish. Methods Authorization to translate all currently available pediatric PROMIS item banks (autumn, 2016) into Swedish was obtained from the PROMIS Health Organization. The translation followed the Functional Assessment of Chronic Illness Therapy translation recommendations with one major modification, which was the use of a bilingual multi-professional review workshop. The following steps were applied: translation, reconciliation, a two-day multi professional reviewer workshop, back translation, and cognitive debriefing with eleven children (8-17 years) before final review. The bilingual multi-professional review workshop provided a simultaneous, in-depth assessment from different professionals. The group consisted of questionnaire design experts, researchers experienced in using patient-reported measures in healthcare, linguists, and pediatric healthcare professionals. Results All item banks had translation issues that needed to be resolved. Twenty-four items (20.7%) needed resolution at the final review stage after cognitive debriefing. The issues with translations included 1. Lack of matching definitions with items across languages (6 items); 2. Problems related to language, vocabulary, and cultural differences (6 items); and 3. Difficulties in adaptation to age-appropriate language (12 items). Conclusions The translated and adapted versions of the eight Swedish pediatric PROMIS item banks are linguistically acceptable. The next stage will be cross-cultural validation studies in Sweden. Despite the fact that there are cultural differences between Sweden and the United States, our translation processes have successfully managed to address all issues. Expert review groups from already-established networks and processes regarding pediatric healthcare throughout the country will facilitate the future implementation of pediatric PROMIS item banks in Sweden.
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| 4. |
- Brodersen, John, et al.
(författare)
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Consequences of screening in abdominal aortic aneurysm : development and dimensionality of a questionnaire
- 2018
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer. - 2509-8020. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Background: In interview studies, men under surveillance for screening-detected abdominal aortic aneurysms have reported ambivalence towards this diagnosis: the knowledge was welcomed together with worries, feelings of anxiety and existential thoughts about life's fragility and mortality due to the diagnosis. Previous surveys about health-related quality of life aspects among men under surveillance for screening-detected aneurysm have all used generic patient-reported outcomes. Therefore, the aim of this study was to extend the core-questionnaire Consequences of Screening for use in abdominal aortic aneurysm screening by testing for comprehension, content coverage, dimensionality, and reliability.Methods: In interviews, the suitability, content coverage, and relevance of the core-questionnaire Consequences of Screening were tested on men under surveillance for a screeningdetected abdominal aortic aneurysm. The results were thematically analysed to identify the key consequences of abnormal screening results. Item Response Theory and Classical Test Theory were used to analyse data. Dimensionality, differential item functioning, local response dependency and reliability were established by item analysis, examining the fit between item responses and Rasch models.Results: The core-questionnaire Consequences of Screening was found to be relevant for men offered regular follow-up of an asymptomatic screening-detected abdominal aortic aneurysm.Fourteen themes especially relevant for men diagnosed with a screening-detected abdominal aortic aneurysm were extracted from the interviews: 'Uncertainty about the result of the ultra sound examination', 'Change in body perception', 'Guilt', 'Fear and powerlessness', 'Negative experiences from the examination', 'Emotional reactions', 'Change in lifestyle', 'Better not knowing', 'Fear of rupture', 'Sexuality', 'Information', 'Stigmatised', 'Self-blame for smoking', 'Still regretful smoking'. Altogether, 55 new items were generated: 3 were single items and 13 were only relevant for former or current smokers. 51 of the 52 items belonging to a theme were confirmed to fit Rasch models measuring fourteen different constructs. No differential item functioning and only minor local dependency was revealed between some of the 51 items.Conclusions: The reliability and the dimensionality of a condition-specific measure with high content validity for men under surveillance for a screening-detected abdominal aortic aneurysm have been demonstrated. This new questionnaire called COS-AAA covers in two parts the psychosocial experience in abdominal aortic aneurysm screening.
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| 5. |
- Carlberg Rindestig, Frida, et al.
(författare)
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Psychometrics of three Swedish physical pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)(R): pain interference, fatigue, and physical activity
- 2021
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- Background The Patient-Reported Outcomes Measurement Information System (PROMIS (R)) aims to provide self-reported item banks for several dimensions of physical, mental and social health. Here we investigate the psychometric properties of the Swedish pediatric versions of the Physical Health item banks for pain interference, fatigue and physical activity which can be used in school health care and other clinical pediatric settings. Physical health has been shown to be more important for teenagers' well-being than ever because of the link to several somatic and mental conditions. The item banks are not yet available in Sweden. Methods 12- to 19-year-old participants (n = 681) were recruited in public school settings, and at a child- and psychiatric outpatient clinic. Three one-factor models using CFA were performed to evaluate scale dimensionality. We analyzed monotonicity and local independence. The items were calibrated by fitting the graded response model. Differential Item analyses (DIF) for age, gender and language were calculated. Results As part of the three one-factor models, we found support that each item bank measures a unidimensional construct. No monotonicity or local dependence were found. We found that 11 items had significant lack of fit in the item response theory (IRT) analyses. The result also showed DIF for age (seven items) and language (nine items). However, the differences on item fits and effect sizes of McFadden were negligible. After considering the analytic results, graphical illustration, item content and clinical relevance we decided to keep all items in the item banks. Conclusions We translated and validated the U.S. PROMIS item banks pain interference, fatigue and physical activity into Swedish by applying CFA, IRT and DIF analyses. The results suggest adequacy of the translations in terms of their psychometrics. The questionnaires can be used in school health and other pediatric care. Future studies can be to use Computerized Adaptive Testing (CAT), which provide fewer but reliable items to the test person compared to classical testing.
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| 6. |
- Gasser, Fredrik, et al.
(författare)
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Further development and evaluation of a questionnaire targeting person-centred outpatient care for persons with long-term conditions
- 2023
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer International Publishing AG. - 2509-8020. ; 7:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient settings for adults with long-term conditions. BACKGROUND: Person-centred care (PCC) has been identified as a key factor to provide high-quality care. However, there is still a lack of instruments that are based on a clearly defined framework for PCC for persons with long-term conditions in an outpatient context. The PCCoc is a patient-reported experience measure under development aiming to fill this gap. METHODS: First, the 35-item PCCoc was reviewed and further developed in collaboration with a user-council. Second, the revised 36-item PCCoc was tested among persons receiving outpatient care for various long-term conditions. A total of 179 persons with long-term conditions from four different specialties participated in the study. User-friendliness and content validity were assessed through structured interviews and relevance ratings of each item. Content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI) were calculated, and basic psychometric properties of the PCCoc using classical test theory were explored. RESULTS: It took a median of 8 min for participants to complete the PCCoc. The majority found items easy to understand, response categories distinct and that no important areas were missing. Results from the CVI analyses suggested that participants found the content of the PCCoc relevant (I-CVI range 0.82-1, S-CVI = 0.95). All psychometric properties examined were satisfactory (e.g., item-total correlations, 0.45-0.75; Cronbach's alpha, 0.96; test-retest stability, 0.83). CONCLUSION: The PCCoc was considered user-friendly and relevant by the intended users, and its psychometric properties were satisfactory. This implies that the PCCoc can be a valuable instrument for evaluating and developing PCC in outpatient care for persons with long-term conditions. However, further studies of the PCCoc are needed to establish its measurement properties in various outpatient settings.
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| 7. |
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| 8. |
- Hudgens, Stacie, et al.
(författare)
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Evaluation of meaningful change in bowel movement frequency for patients with carcinoid syndrome
- 2019
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 3:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrically assess meaningful change in bowel movement frequency among carcinoid syndrome patients using data from the TELESTAR clinical study. Methods: An anchor-based approach for deriving meaningful change thresholds consisted of mapping change from baseline bowel movement frequency to other patient-reported assessments of change. These included the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire - Core Questionnaire (QLQ-C30) Diarrhea Symptom responders, the EORTC Gastrointestinal NET questionnaire (GI.NET21) GI Symptom responders, and reported adequate relief at Week 12 (>= 10-point score decrease from Day 1 to Week 12). Parameters included within-group mean change from baseline to Week 12, t-tests of the change (Wilcoxon rank sum for adequate relief), and effect size. Results: There were 135 carcinoid syndrome patients with a mean baseline frequency of 5.7 bowel movements a day. A distribution-based method yielded meaningful change estimates of 0.62 bowel movements a day for overall frequency and 0.83 bowel movements a day at Week 12. Anchor-based analysis indicated a large effect size among patients who reported adequate relief at Week 12 (- 1.58; n = 18; P = 0.014), the QLQ-C30 Diarrhea domain responders (- 1.24; n = 40; P < 0.001), and the GI.NET21 GI Symptoms Domain responders (- 1.49; n = 25; P = 0.005). Exit interview data for meaningful change yielded effect size estimates of - 1.57 for overall change during the Double-blind Treatment Period and - 1.97 for change between Baseline and Week 12. Conclusions: Meaningful change derivation is critical to interpret patient outcomes for evaluating treatment efficacy. In this study, carcinoid syndrome patients experienced clinically meaningful reductions in bowel movement frequency of >= 30% over 12 weeks with telotristat ethyl treatment.
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| 9. |
- Jendle, Johan, 1963-, et al.
(författare)
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A utility valuation study assessing the impact of postprandial glucose control on quality of life of individuals with type 1 or type 2 diabetes
- 2018
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 2:20
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Tidskriftsartikel (refereegranskat)abstract
- Background: Consideration of health-related quality of life (HRQOL) in diabetes has been associated with long-term and short-term complications such as hypoglycaemia, but not with short-term glucose control. This study aimed to collect health utilities related to different degrees of poorly controlled postprandial glucose (PPG) and its impact on HRQOL in the UK and in Sweden.Methods: Three health state descriptions were developed based on literature reviews and interviews with people with diabetes and healthcare professionals, characterising mild, moderate and severe impact of postprandial hyperglycaemic symptoms on HRQOL. Time Trade-Off (TTO) interviews with a 10-year trade-off period were conducted with samples of the UK general public and of Swedish people with diabetes. Mean TTO-derived health state values were expressed on a scale from 0 (death) to 1 (full health).Results: One hundred fifty participants from the general population were interviewed in the UK (57% female, mean age 35 years) and 150 participants with diabetes in Sweden (64% female, mean age 51 years, 42% type 1 and 58% type 2 diabetes). The mean TTO-derived health state values were for the UK and Swedish participants: mild impact of poorly PPG control (0.89/0.76); moderate (0.75/0.71); severe (0.56/0.58).Conclusions: Glucose lowering treatments associated with improved control over PPG levels could have important benefits to people with type 1 and type 2 diabetes since findings suggest that increasing severity in postprandial hyperglycaemic symptoms is perceived as having significant negative impact on HRQOL of individuals with type 1 or type 2 diabetes.
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| 10. |
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