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  • 1
    In: Orphanet Journal of Rare Diseases, Springer Science and Business Media LLC, Vol. 16, No. 1 ( 2021-12)
    Abstract: Rare disease patient-reported outcome measures (PROMs) require linguistic adaptation to overcome the challenge of geographically dispersed patient populations. Importantly, PROMs such as health-related quality of life (HRQoL) should accurately capture responses to patient-identified concerns. The Systemic Sclerosis Quality of Life Questionnaire (SScQoL) is a 29-item tool validated in six languages. Previous evaluation of the German version revealed problems with dichotomous responses. This study aimed to revise the German SScQoL, extend the response structure, and evaluate content and construct validity, reliability and unidimensionality. Methods The instrument validation study involved revising the German SScQoL response structure, cognitive debriefing with patients and validation using Rasch analysis. The revised SScQoL was completed by Swiss-German-speaking patients with SSc within the Swiss MANagement Of Systemic Sclerosis (MANOSS) study. Rasch analysis was employed to test the validity, reliability and unidimensionality of the revised instrument. Results Based on cognitive debriefing with patients (n = 6) dichotomous items were extended to a polytomous 4-point response structure. A total of 78 patients completed the revised SScQoL. Initial analysis of the 29 items suggested the scale lacked fit to the model (χ 2  = 51.224, df  = 29, p  = 0.007). Grouping items into five domains resulted in an adequate fit to the Rasch model (χ 2  = 5.343, df  = 5, p  = 0.376) and unidimensionality (proportion of significant independent t tests: 0.045, 95% CI 0.016–0.114). Overall, the scale was well targeted, had high internal consistency (Person Separation Index, PSI = 0.931) and worked consistently in patients with different demographic and clinical characteristics. Conclusions The revised German SScQoL has a 4-point response structure and is a valid, reliable measure. Rasch analysis is useful for validating continuous response structure of quality of life measures. Further evaluation of measurement equivalence with other German-speaking cultures is required for multinational comparisons and data pooling.
    Type of Medium: Online Resource
    ISSN: 1750-1172
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2225857-7
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  • 2
    In: RMD Open, BMJ, Vol. 7, No. 3 ( 2021-09), p. e001783-
    Abstract: We engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using internet-based information and communication technologies (ICT). Methods We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17). Results Of patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information ( x ¯ =6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability ( x ¯ =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps ( x ¯ =4.8, 95% CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed ‘considering non-ICT-accessible groups ’ and ‘fitting patients’ and professionals’ technology ’ as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual’s disease course. Recommendations included ‘providing timely, understandable and safe information ’ and ‘empowering end-users in ICT and health decision-making skills ’ . Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included ‘addressing end-user perceptions ’ and ‘putting people at the centre of technology ’ . Conclusions Patients and professionals need education/training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient–provider communication. Design that is responsive to end-users’ needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability.
    Type of Medium: Online Resource
    ISSN: 2056-5933
    Language: English
    Publisher: BMJ
    Publication Date: 2021
    detail.hit.zdb_id: 2812592-7
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  • 3
    Online Resource
    Online Resource
    Frontiers Media SA ; 2022
    In:  Transplant International Vol. 35 ( 2022-4-14)
    In: Transplant International, Frontiers Media SA, Vol. 35 ( 2022-4-14)
    Abstract: Weight gain after liver transplantation (LTx) contributes to new-onset obesity. We explored patients’ experiences with gaining weight after LTx. Individual interviews were guided by open-ended questions. We analyzed transcripts with the reflexive thematic analysis approach by Braun and Clarke. The 12 participants gained 11.5 kg weight (median) over a median of 23 months after LTx. The constitutive theme “The main thing is to be alive” was a recurrent insight, captured in three facets: “The arduous path back to living” was the emotional expression of the ups and downs during a life-threatening illness to finally being grateful for the new life. “A pleasurable new phase of life” was the legitimation, reflecting the appreciation of gaining weight and returning to a healthy appearance. “I am allowed to look like this now” was the consoling facet after a time of burden due to the increased weight and frustration of being unsuccessful in losing weight. Finally, the awareness of being a LTx survivor outplayed the burden of the excess weight. Early interventions are crucial because the comforting insight “I am allowed to look like this now” may hinder further engagement in weight loss activities. Our recommendations on education and self-management support may guide clinical practice.
    Type of Medium: Online Resource
    ISSN: 1432-2277
    Language: Unknown
    Publisher: Frontiers Media SA
    Publication Date: 2022
    detail.hit.zdb_id: 1463183-0
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  • 4
    In: BMC Infectious Diseases, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2021-12)
    Abstract: Hepatitis C virus reinfections in HIV-positive men-who-have-sex-with-men (MSM) challenge the effectiveness of antiviral treatment. To fight this problem, an adapted sexual risk reduction intervention was implemented within a hepatitis C treatment trial. Following this, the current study had two aims and describes 1) how the program was received by participants; and 2) their responses to the program regarding sexual risk taking. Based on the participants’ input, we hoped to judge the intervention’s potential for scale-up. Methods Seventeen participants who received the sexual risk reduction intervention in addition to hepatitis C treatment were recruited for semi-structured interviews six to 12 months post-intervention. We evaluated the responses via reflexive thematic analysis and applied the concept of sense-making. Results Giving hepatitis C a place and living without it again illustrates how participants received the program and how their experiences were altered by the impact of sense-making. Based on their responses, we allocated participants to three groups: 1. Avoid risks: get rid of hepatitis C for life . For these men, hepatitis C remained a life-threatening disease: they actively modified their risk behavior and felt supported by the intervention in maintaining their behavioral changes. 2. Minimize risks: live as long as possible without hepatitis C. In contrast to group 1, these men saw hepatitis C as a manageable disease. The intervention facilitated reflection on risks and how to develop behavioral changes that suited them individually. 3. Accept risks; live with the risk of hepatitis C. These men perceived behavioral changes as much more difficult than “easy” medical treatment. They expected to either undergo repeated rounds of treatment or stay HCV re-infected. Conclusion These results illustrate the diversity of men’s responses and their decisions regarding sexual risk behavior after participating in a combination of antiviral treatment and a sexual risk reduction intervention. Two major aspects were identified: 1) Teachable moments, particularly at the time of diagnosis/treatment, could offer an opportunity to develop openness for behavioral change; 2) adapting sexual risk reduction interventions to sense-making patterns could help to improve its effectiveness. Support for reducing infection risk and raising awareness of preventative measures are additional benefits. Trial registration Clinical Trial Number: NCT02785666 , 30.05.2016.
    Type of Medium: Online Resource
    ISSN: 1471-2334
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2041550-3
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  • 5
    In: Journal of Advanced Nursing, Wiley, Vol. 75, No. 12 ( 2019-12), p. 3774-3791
    Abstract: 本方案所述的系统性硬化症管理研究旨在基于语境分析和涉众,为瑞士患有罕见疾病系统性硬化症的患者建立一种慢性护理模式。 设计 本研究采用实践科学的方法,首先用解释性顺序混合法进行语境分析研究,然后再根据广泛的涉众建立模型,并进行德尔菲研究以达成共识。 方法 首先,将对患者和医疗保健专业人员进行定量横断面调查,以确定目前采用的慢性病管理和技术准备的实践模式。其次,将与患者及其家属和专业医疗人员进行定性访谈,以便更深入地了解定量调查中确定的护理需求。最后,将采取患者、专业医疗人员和其他专家的意见共同创建护理模式。电子健康增强型慢性病护理模式将作为指导框架。将使用德尔菲研究方法对新模式及其相应的结果参数进行完善,以就系统性硬化症患者的可测试护理模式达成共识。该方案已于2018年9月获得“瑞士伦理委员会”研究伦理委员会批准。 讨论 在本背景下,本研究采用的参与式方法对于系统性硬化症患者模型的语境匹配至关重要。随后,计划进行可行性测试及实施,以评估该模式对于该患者群体面临的健康差异的价值。 影响 患有这种罕见疾病的患者无法从合格的专业医疗人员处获得一致、专业的护理和自我管理支持。考虑到技术机会,有必要重新设计当前的护理,以满足患者及其家属的需求。
    Type of Medium: Online Resource
    ISSN: 0309-2402 , 1365-2648
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2019
    detail.hit.zdb_id: 2009963-0
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  • 6
    Online Resource
    Online Resource
    SMW Supporting Association ; 2022
    In:  Swiss Medical Weekly Vol. 152, No. 2324 ( 2022-06-13), p. w30177-
    In: Swiss Medical Weekly, SMW Supporting Association, Vol. 152, No. 2324 ( 2022-06-13), p. w30177-
    Abstract: BACKGROUND: Direct-acting antivirals present a treatment opportunity that provides high rates of sustained viral response even for people who have lived for years with hepatitis C virus (HCV) infection. While it is known that liver-related morbidity and mortality can be decreased and many symptoms reversed, this population's need for post-treatment professional support has not been extensively assessed. Therefore, our study aimed to describe the experiences of patients cured of chronic HCV infection and explore the meaning of these experiences regarding specific follow-up care needs within the context of the Swiss health system. METHODS: For this qualitative study, we applied a reflexive thematic analysis approach with a social constructivist orientation. Twelve participants shared their experiences of being cured and their needs regarding follow-up care. Subsequently, the data were analysed in an iterative process based on Braun and Clarke's six phases of analysis. RESULTS: In the overarching theme, participants summarised their new situation with the statement, “being cured feels like being released from a cage”. They experienced striking health improvements with overwhelmingly positive influences on their everyday lives. This experience was characterised for all participants by important changes on three levels. We categorised these in three sub-themes: a) “the ball and chain have been lightened”: this sub-theme illustrates the reduction of social limitations and emotional stress; b) “the gnawing at the liver has let up”: this signifies relief from physical symptoms and strongly improved well-being. And under the third sub-theme, “shaping the new freedom”, the participants described their new situation as a sometimes-stressful challenge because they had to reorient their self-management. They shared their concerns regarding the ongoing stigma of HCV infection, feeling insecure in their own health after being cured, and learning how to use their heightened sense of confidence and openness to enact behavioural changes that would improve their health-related lifestyles. CONCLUSION: The findings of this study provide insights into treatment experiences of patients cured of chronic HCV infection and the need for follow-up care even after successful virus eradication. The results can sensitise healthcare professionals to patients’ post-cure challenges and guide their care interventions. Some of these challenges, such as dealing with stigma, can be addressed during treatment; other needs, like providing motivation to engage in healthy behaviour, may warrant targeted follow-up.
    Type of Medium: Online Resource
    ISSN: 1424-3997
    Language: Unknown
    Publisher: SMW Supporting Association
    Publication Date: 2022
    detail.hit.zdb_id: 2031164-3
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  • 7
    Online Resource
    Online Resource
    Elsevier BV ; 2023
    In:  Journal of Hepatology Vol. 79, No. 1 ( 2023-07), p. 218-225
    In: Journal of Hepatology, Elsevier BV, Vol. 79, No. 1 ( 2023-07), p. 218-225
    Type of Medium: Online Resource
    ISSN: 0168-8278
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2023
    detail.hit.zdb_id: 2027112-8
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  • 8
    In: Clinical Infectious Diseases, Oxford University Press (OUP), ( 2019-04-03)
    Type of Medium: Online Resource
    ISSN: 1058-4838 , 1537-6591
    RVK:
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2019
    detail.hit.zdb_id: 2002229-3
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  • 9
    In: Clinical Infectious Diseases, Oxford University Press (OUP), Vol. 73, No. 7 ( 2021-10-05), p. e2194-e2202
    Abstract: In 2016, the World Health Organization (WHO) introduced global targets for the elimination of hepatitis C virus (HCV) by 2030. We conducted a nationwide HCV micro-elimination program among men who have sex with men (MSM) living with human immunodeficiency virus (HIV) from the Swiss HIV Cohort Study (SHCS) to test whether the WHO goals are achievable in this population. Methods During phase A (10/2015–06/2016), we performed a population-based and systematic screening for HCV-RNA among MSM from the SHCS. During phase B (06/2016–02/2017) we offered treatment with HCV direct-acting antiviral (DAA) agents to MSM identified with a replicating HCV infection. During phase C (03/2017–11/2017), we offered rescreening to all MSM for HCV-RNA and initiated DAA treatment in MSM with replicating infections. Results We screened 3715/4640 (80%) MSM and identified 177 with replicating HCV infections (4.8%); 150 (85%) of whom started DAA treatment and 149 (99.3%) were cured. We rescreened 2930/3538 (83%) MSM with a prior negative HCV-RNA and identified 13 (0.4%) with a new HCV infection. At the end of the micro-elimination program, 176/190 MSM (93%) were cured, and the HCV incidence rate declined from .53 per 100 patient-years (95% CI, .35–.83) prior to the intervention to .12 (95% CI, .03–.49) by the end of 2019. Conclusions A systematic, population-based HCV micro-elimination program among MSM living with HIV was feasible and resulted in a strong decline in HCV incidence and prevalence. Our study can serve as a model for other countries aiming to achieve the WHO HCV elimination targets. Clinical Trials Registration NCT02785666.
    Type of Medium: Online Resource
    ISSN: 1058-4838 , 1537-6591
    RVK:
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2002229-3
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  • 10
    In: The Gerontologist, Oxford University Press (OUP), Vol. 61, No. 7 ( 2021-09-13), p. 1041-1052
    Abstract: As new models of care aiming to reduce hospitalizations from nursing homes emerge, their implementers must consider residents’ and relatives’ needs and experiences with acute changes in the residents’ health situations. As part of the larger INTERCARE implementation study, we explored these persons’ experiences of acute situations in Swiss nursing homes. Research Design and Methods 3 focus groups were conducted with residents and their relatives and analyzed via reflexive thematic analysis. Results The first theme, the orchestra plays its standards, describes experiences of structured everyday care in nursing homes, which functions well despite limited professional and competency resources. The second theme, the orchestra reaches its limits, illustrates accounts of acute situations in which resources were insufficient to meet residents’ needs. Interestingly, participants’ perceptions of acute situations went well beyond our own professional view, that is, changes in health situations, and included situations best summarized as “changes that might have negative consequences for residents if not handled adequately by care workers.” Within the third theme, the audience compensates for the orchestra’s limitations, participants’ strategies to cope with resource limitations in acute situations are summarized. Discussion and Implications Our findings suggest differences between care providers’ and participants’ perspectives regarding acute situations and care priority setting. Alongside efforts to promote staff awareness of and responsiveness to acute situations, care staff must commit to learning and meeting individual residents’ and relatives’ needs. Implications for the development and implementation of a new nurse-led model of care are discussed.
    Type of Medium: Online Resource
    ISSN: 0016-9013 , 1758-5341
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2043844-8
    SSG: 12
    SSG: 5,2
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