Exploring group differences in the response to a sexual risk reduction intervention to prevent hepatitis C virus reinfection in HIV-infected MSM: a mixed-methods study.

To prevent hepatitis C virus (HCV) reinfection, within the Swiss HCVree Trial, a preventive risk reduction intervention was implemented alongside curative treatment. Formative qualitative research identified three response patterns to the intervention. This mixed-methods study's aim was to cross-validate group differences in (a) the content of sexual risk reduction goals set during intervention and (b) the extent of their behavioural change in condomless anal intercourse with non-steady partners (nsCAI), sexualised and intravenous drug use at start and six-month post-intervention. Qualitative thematic analysis was used to summarise goal setting domains. Quantitative descriptive analysis was used to evaluate group differences based on assumptions of the group descriptions. Results largely confirmed assumptions on inter-group response differences in goal setting and behaviour: as expected group 1 Avoid risks showed the lowest HCV risk profile with changes in nsCAI. Group 2 Minimize-risks and Group 3 Accept-risks showed unchanged nsCAI. Group 3 had the highest HCV risk profile. Differences in their goal preferences (1: condom use; 2 reduction blood exposure; 3 safer dating) highlight diversity in attitudes to behavioural change. Our results improve understanding of variability in intervention responses such as changes in attitudes and behaviour. This provides evidence for intervention tailoring and outcome measurement.

Nursing care for patients with cirrhosis.

Cirrhosis represents a major cause of morbidity and mortality, leading to a marked impairment in the quality of life of patients and their caregivers, and resulting in a major burden on healthcare systems. Currently, in most countries, nurses still play a limited role in the care of patients with cirrhosis, which is mainly restricted to the care of patients hospitalised for acute complications of the disease. The current manuscript reviews the established and potential new and innovative roles that nurses can play in the care of patients with cirrhosis. In the hospital setting, specialised nurses should become an integral part of interprofessional teams, helping to improve the quality of care and outcomes of patients with cirrhosis. In the primary care setting, nurses should play an important role in the care of patients with compensated cirrhosis and also facilitate early diagnosis of cirrhosis in those at risk of liver diseases. This review calls for an improved global liver disease education programme for nurses and increased awareness among all healthcare providers and policymakers of the positive impacts of advanced or specialist nursing practice in this domain.

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.

BACKGROUND: The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. Little is known about how CCM elements are implemented in rare disease care or how patients' care experiences relate to health-related quality of life (HRQoL). We engaged patients living with systemic sclerosis (SSc) to assess current care according to the CCM from the patient perspective and their HRQoL. METHODS: We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional quantitative survey (n = 101) using the Patient Assessment of Chronic Illness Care (PACIC) and Systemic Sclerosis Quality of Life (SScQoL) questionnaires. Next, we used data from individual patient interviews (n = 4) and one patient focus group (n = 4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions. RESULTS: The mean overall PACIC score was 3.0/5.0 (95% CI 2.8-3.2, n = 100), indicating care was 'never' to 'generally not' aligned with the CCM. Lowest PACIC subscale scores related to 'goal setting/tailoring' (mean = 2.5, 95% CI 2.2-2.7) and 'problem solving/contextual counselling' (mean = 2.9, 95% CI 2.7-3.2). No significant correlations were identified between the mean PACIC and SScQoL scores. Interviews revealed patients frequently encounter major shortcomings in care including 'experiencing organized care with limited participation', 'not knowing which strategies are effective or harmful' and 'feeling left alone with disease and psychosocial consequences'. Patients often responded to challenges by 'dealing with the illness in tailored measure', 'taking over complex coordination of care' and 'relying on an accessible and trustworthy team'. CONCLUSIONS: The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling-aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs.

"Shaping the new freedom": A reflexive thematic analysis on patients' post cure needs after years of living with hepatitis C.

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.

The Main Thing is to be Alive-Exploring Patients' Experiences With Weight Gain After Liver Transplantation: A Qualitative Study.

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.

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study.

OBJECTIVES: 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 ([Formula: see text] =6.7, 95% CI: 6.2 to 7.3, range 1-10), yet were less confident evaluating information reliability ([Formula: see text] =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps ([Formula: see text] =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.

A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model.

BACKGROUND: 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 (χ2 = 51.224, df = 29, p = 0.007). Grouping items into five domains resulted in an adequate fit to the Rasch model (χ2 = 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.

Response to a sexual risk reduction intervention provided in combination with hepatitis C treatment by HIV/HCV co-infected men who have sex with men: a reflexive thematic analysis.

BACKGROUND: 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.

Residents' and Relatives' Experiences of Acute Situations: A Qualitative Study to Inform a Care Model.

BACKGROUND AND OBJECTIVES: 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.

A Treatment-as-Prevention Trial to Eliminate Hepatitis C Among Men Who Have Sex With Men Living With Human Immunodeficiency Virus (HIV) in the Swiss HIV Cohort Study.

BACKGROUND: 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.

Very Low Hepatitis C Viral Loads in Treatment-naive Persons: Do They Compromise Hepatitis C Virus Antigen Testing?

BACKGROUND: Hepatitis C virus (HCV) antigen testing is less expensive than quantitative reverse-transcription polymerase chain reaction but has lower sensitivity for very low viral load (VLVL; HCV RNA ≤3000 IU/mL). Currently the benefits of antigen testing for screening are discussed, but data on prevalence and outcomes of persons with VLVL are scarce. METHODS: We assessed prevalence and predictors of VLVL by logistic regression in treatment-naive participants in the Swiss Hepatitis C Cohort Study. We analyzed if the last viral load after VLVL was low, compared cirrhosis and mortality in persons with and without VLVL, and evaluated the number of samples with VLVL that were reactive by antigen testing. RESULTS: We included 2533 treatment-naive persons with available quantitative HCV RNA testing results. Overall, 133 persons (5.3%) had a VLVL. Age 18-40 years, female sex, and human immunodeficiency virus coinfection were associated with VLVL. Of 72 persons with a viral load available after VLVL, 14% had a VLVL and 17% had spontaneous viral clearance. The prevalence and incidence of cirrhosis and mortality were comparable in persons with and without VLVL; all 24 persons with VLVL and cirrhosis had excessive alcohol consumption or immunosuppression. Overall, 33% of samples with VLVL were reactive by antigen testing. CONCLUSIONS: The frequency of VLVL was low. Among the persons who would probably be missed by antigen screening, some had a favorable disease course, but some had immunosuppression and liver cirrhosis. The benefit of HCV antigen testing for screening may be limited by the risk of missing patients with severe liver disease.

Screening HIV-positive men who have sex with men for hepatitis C re-infection risk: is a single question on condom-use enough? A sensitivity analysis.

BACKGROUND: Hepatitis C virus (HCV) is common in men who have sex with men (MSM) with HIV. The Swiss HCVree Trial targeted a micro-elimination by using a treat and counsel strategy. Self-reported condomless anal intercourse with non-steady partners was used as the selection criterion for participation in a counselling intervention designed to prevent HCV re-infection. The purpose of this study was to assess the ability of this criterion to identify men who engaged in other sexual risk behaviours associated with HCV re-infection. METHODS: Men who disclosed their sexual and drug- use behaviours during the prior 6 months, at study baseline, were included in the current study. Using a descriptive comparative study design, we explored self-reported sexual and drug-use risk behaviours, compared the odds of reporting each behaviour in men who reported and denied condomless anal intercourse with non-steady partners during the prior year and calculated the sensitivity/specificity (95% CI) of the screening question in relation to the other at-risk behaviours. RESULTS: Seventy-two (61%) of the 118 men meeting eligibity criteria reported condomless anal intercourse with non-steady partners during the prior year. Many also engaged in other potential HCV transmission risk behaviours, e.g., 52 (44%) had used drugs. In participants disclosing drug use, 44 (37%) reported sexualised drug use and 17 (14%) injected drugs. Unadjusted odds ratios (95% CI) for two well-known risk behaviours were 2.02 (0.80, 5.62) for fisting and 5.66 (1.49, 37.12) for injecting drug use. The odds ratio for sexualised drug use - a potential mediator for increased sexual risk taking - was 5.90 (2.44, 16.05). Condomless anal intercourse with non-steady partners showed varying sensitivity in relation to the other risk behaviours examined (66.7-88.2%). CONCLUSIONS: Although condomless anal intercourse with non-steady partners was fairly sensitive in detecting other HCV relevant risk behaviours, using it as the only screening criterion could lead to missing a proportion of HIV-positive men at risk for HCV re-infection due to other behaviours. This work also points to the importance of providing access to behavioral interventions addressing other sexual and drug use practices as part of HCV treatment. TRIAL REGISTRATION: Clinical Trial Number: NCT02785666 , 30.05.2016.

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol.

AIM: The aim of the management of systemic sclerosis (MANOSS) study described in this protocol is to develop a chronic care model, based on a contextual analysis and stakeholder involvement, for patients living with the rare disease systemic sclerosis (SSc) in Switzerland. DESIGN: Applying an implementation science approach, this study starts with an explanatory sequential mixed method study for contextual analysis, followed by broad stakeholder involvement for model development and a Delphi study to reach consensus. METHODS: First, a quantitative cross-sectional survey with patients and healthcare professionals (HPs) will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co-created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi-study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee. DISCUSSION: The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population. IMPACT: Patients living with this rare disease lack access to coordinated, specialized care and self-management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs.

High Cure Rates With Grazoprevir-Elbasvir With or Without Ribavirin Guided by Genotypic Resistance Testing Among Human Immunodeficiency Virus/Hepatitis C Virus-coinfected Men Who Have Sex With Men.

Background: This study was performed to investigate the efficacy and safety of grazoprevir-elbasvir guided by baseline resistance-associated substitutions (RASs) in the Swiss HCVree Trial. Methods: We performed hepatitis C virus (HCV) RNA screening among all men who have sex with men (MSM) enrolled in the Swiss HIV Cohort Study. Individuals with replicating HCV genotype 1 or 4 infection were eligible for grazoprevir-elbasvir treatment. Genotype 1a-infected individuals with baseline RASs and genotype 4-infected individuals with prior failure of HCV treatment received 16 weeks of grazoprevir-elbasvir combined with ribavirin. All other individuals received 12 weeks of grazoprevir-elbasvir alone. Patients reporting unprotected sex with occasional partners were offered a HCV risk reduction-oriented behavioral intervention. Results: We screened 3722 MSM and identified 177 (4.8%) with replicating infection. A total of 122 individuals (3.3%) were eligible for study treatment. Six of 76 patients infected with genotype 1a (7.3%) harbored baseline RASs. Sustained virological response after 12 weeks of follow-up was achieved in 121 patients (99%), including all with genotype 1a infection. Overall, 8 serious adverse events occurred, none of which was related to the study drug. Seventy-five percent of eligible MSM participated in the risk counseling program. Conclusions: Grazoprevir-elbasvir for 12 or 16 weeks, with or without ribavirin, achieved high cure rates and had an excellent safety profile. Unique to other studies, the treatment duration was guided by the presence of baseline RASs among genotype 1a-infected individuals, and the treatment phase was accompanied by an HCV risk reduction-oriented behavioral intervention. This successful population-wide treatment approach lays the groundwork to achieve HCV elimination in coinfected MSM. Clinical Trials Registration: NCT02785666.

Mastering Together the Highs and Lows: Patients' and Caregivers' Perceptions of Self-Management in the Course of Liver Transplantation.

CONTEXT: Self-management in chronic illness involves complex medical, role-related, and emotional tasks. Still, while self-management support of patients and their families has become a cornerstone of chronic illness care, information is limited as to how liver transplant (LTx) patients and close caregivers perceive self-management before and after transplantation. OBJECTIVE: To explore self-management tasks in view of medical, role-related, and emotional tasks in LTx candidates and recipients and their respective close caregivers. DESIGN AND PARTICIPANTS: For this qualitative study, focus group interviews were conducted and analyzed using knowledge mapping according to the 3 above-noted self-management categories. German-speaking adults who were wait-listed for or had received LTx and who were being treated in University Hospital Zurich or who were close caregivers to such patients were eligible for participation. As patients' data were closely related to those of the caregivers, the 2 groups' data sets were merged during the final development of themes. RESULTS: Thirty participants comprised 7 focus groups. The main theme was "The current state of health determines the daily rhythm." The essence of how patients and caregivers described their self-management tasks is compiled in "Mastering together the highs and lows" which comprises 3 core themes: mastering medical management, managing roles together, and managing the highs and lows of emotion. CONCLUSION: Patients and close caregivers prioritized self-management tasks as follows: first medical, then role-related, and finally emotional management. Over the course of LTx, health-care professionals should acknowledge this ranking while providing individualized support to both patients and caregivers.

Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy: a phenomenological study.

AIMS AND OBJECTIVES: To explore the experiences of being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy. BACKGROUND: Overt hepatic encephalopathy is a common complication in patients with liver cirrhosis. It is associated with decreased quality of life for patients, and presents a major burden for caregivers. The involvement of informal caregivers in medical care is recommended, but it has not been clearly described. An understanding of the experience of caregivers is needed to improve the support provided to them by healthcare professionals. DESIGN: A qualitative, interpretative, phenomenological approach was used. METHODS: Twelve informal caregivers participated in qualitative interviews. The analysis followed the six steps of the interpretative phenomenological approach. RESULTS: Caregivers' experiences were described using five themes: (1) feeling overwhelmed by their loved one having unexplainable symptoms and behaviours; (2) learning that this and previous experiences were complications of liver disease; (3) becoming aware of the symptoms of hepatic encephalopathy; (4) having feelings of being tied down and (5) experiencing and overcoming obstacles in working with healthcare professionals. CONCLUSIONS: This study provides insight into caregivers' experiences and the consequences for their lives. The first occurrence of symptoms was a shock, but receiving the diagnosis was seen as an important step in understanding and learning. Caregivers provide daily assessments of their relatives' conditions, and they feel responsible for medication management. Over time, the caregivers impressively showed how they were able to incorporate their personal experiences into caregiving and to accept more accountability in managing the disease. RELEVANCE TO CLINICAL PRACTICE: Nurses should acknowledge caregivers as experts in caring for their loved ones. Nurses can assist caregivers in managing an episode of hepatic encephalopathy and can provide individualised interventions to ease the future burden.

"Fighting an uphill battle": experience with the HCV triple therapy: a qualitative thematic analysis.

BACKGROUND: Hepatitis C virus (HCV) infections are a severe burden on public health worldwide, causing mortality rates triple that of the general population. Since 2011, for both therapy-naive and therapy-experienced genotype 1 patients, the first generation of direct acting antivirals (DAAs), i.e., the protease-inhibitors (PI) telaprevir and boceprevir have been added to existing dual therapies. The therapeutic effect of the resulting triple therapy is striking; however, treatment regimens are complex and commonly cause side effects. Little is known of how patients implement therapy in their daily lives, or of how they deal with these effects.This study aims to describe HCV patients' experiences with protease-inhibitor-based triple therapy and their support needs. METHODS: A qualitative design was used. Patients from three outpatient clinics, with ongoing, completed or discontinued PI treatment experience were recruited using a maximum variation sampling approach. Open-ended interviews were conducted and analyzed using thematic analysis according to Braun & Clarke (Qual Res Psychol 3:77-101, 2006). RESULTS: Thirteen patients participated in the interviews. All described themselves as highly motivated to undergo treatment, since they saw the new therapy as a "real chance" for a cure. However, all later described the therapy period as a struggle. The constitutive theme-"Fighting an uphill battle"- describes the common existential experience of and negative consequences of coping with side effects. The processes that fostered this common experience followed three sub-themes: "encountering surprises", "dealing with disruption" and "reaching the limits of systems". CONCLUSION: HCV patients undergoing outpatient protease-inhibitor-based triple therapy need systematic support in symptom management. This will require specially trained professionals to advise and support them and their families, and to provide rapid responses to their needs throughout this complex course of therapy. As the generation of DAAs for all genotypes, are expected to have less severe side effects, and many HCV patients require treatment, this knowledge can improve treatment support tremendously, especially for patients who are quite difficult to treat. Furthermore, these findings are helpful to illustrate development in HCV treatment.

[Hepatitis C! Experience in diagnosis and medical treatment. A literature review]. / Hepatitis C! Erleben der Diagnose und der medikamentösen Therapie. Eine Literaturübersicht.

Chronic hepatitis C can have physical, psychological or emotional effects on a person. The chronic infection can result in an advanced liver disease and/or influence daily life and self-perception. Today, the possibility to eliminate the virus exists but the therapy is difficult, a decrease in quality of life is known. Anyway, the sustained viral response isn't achievable for everyone. Care in Switzerland usually takes place in the outpatient clinics. Nurse participation to improve self-management is in discussion. For this specific work knowledge of patient's perception is crucial. A literature review was done to answer two questions: "What is the experience of the illness 'chronic hepatitis C'?" and additionally "What has to be managed when undergoing treatment?". A literature search was conducted in the databases of Pubmed and CINAHL. Seven qualitative studies were included. Diagnosis, contagion, illness, stigmatisation and fatigue are central themes and can influence each other. Discussion about treatment and the decision for it seems to be ambiguous. Patients feel reduced to their disease and demand for individual interventions especially for their experience with their illness. A targeted assessment seems important to appreciate their needs in each situation.