Nursing Care For Patients With Cirrhosis

Liver cirrhosis represents a major cause of morbidity and mortality, causes a marked impairment of quality of life of patients and their caregivers, and causes a major burden for health systems. Currently, nurses still play in most countries a limited role in the care of patients with cirrhosis which is mainly restricted to the care of patients hospitalized 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 liver cirrhosis. In the hospital setting, specialized nurses become an integral part of interprofessional teams 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 subjects at risk of liver diseases. This review calls for an improved global liver diseases education program for nurses and increased awareness among all healthcare providers and policy makers of the positive impacts of advanced or specialist nursing practice in this domain

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

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

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

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

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.; 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.; 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%).; 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.; Clinical Trial Number: NCT02785666 , 30.05.2016

Going HCVree: Prevention of hepatitis C reinfection in HIV-infected men who have sex with men. A mixed methods study to enable scalability of a behavioral risk reduction intervention

Since the introduction of highly effective direct-acting antivirals (DAA), elimination of the hepatitis C virus (HCV) has become a realistic objective, leading the World Health Organization (WHO) to define elimination goals by 2030 [1]. Because HCV incidence and prevalence are more relevant within certain groups [2], focusing on key subpopulations for micro-elimination can be an effective strategy [3]. This requires the development of interventions tailored specifically for the target groups. In addition to screening and providing access to treatment, the overall intervention plan has to include the prevention not only of new infections but also of reinfection [3, 4]. In high-income countries, HIV-infected men who have sex with men (MSM) represent a high-impact treatment group. In recent years, members of this group have showed rap-idly increasing HCV incidence. For example, an 18-fold increase was observed between 1998 and 2011 in MSM participating in the Swiss HIV Cohort Study (SHCS) [5]. A major trigger for this HCV epidemic in HIV-infected MSM is sexual transmission. While related biological, behavioral and social factors are all discussed, behavioral factors ap-pear to be the most important drivers of transmission [6, 7]. Sexual practices that put MSM particularly at risk are currently a matter of discussion. For example, sexualized drug use is associated with additional risks, e.g., sharing of injection equipment or sexual encounters with increased potential for anal or rectal trauma [8-12]. And while some discussion remains as to the exact ranking of transmission drivers, current evidence in-dicates that an interplay between sexual and drug use behaviors is extremely influential [13]. Among HIV-infected MSM, the incidence-rate of HCV reinfection after successful treat-ment—5.93-9.2/100 person-years (py)—is the highest of any current grouping [14, 15]. Considering that reinfection is associated with complex behavioral risk factors, success-ful micro-elimination will demand a combination of behavior change and medical treat-ment as numerous researchers have argued [13, 16-18]. In 2015, noting the urgent need to prevent HCV reinfection in HIV-infected MSM, Swiss researchers decided to test an approach that combined pharmaceutical treatment with a behavioral counselling intervention [19]. Their decision was supported by a mathematic modelling study indicating that, without behavioral changes, micro-elimination would not be possible in Switzerland [20]. Until that time, no behavioral intervention focusing on HCV-related sexual risk reduction has been described or evaluated; five years later, to our knowledge, this is the first such study. The overall immediate aim of this thesis was to strengthen the comprehensive behav-ioral prevention strategy, with the long-term aim of improving HCV micro-elimination. Guided by the Medical Research Council (MRC) framework for complex interventions in health [21, 22] in our process’s first phase, we developed an HCV-specific sexual risk reduction intervention by adapting an evidence-based HIV sexual risk reduction in-tervention. In the second, after feasibility testing the resulting intervention within the framework of the Swiss HCVree Trial, we evaluated its impact. Chapter 1 provides an introduction to our topic in terms of content and methodology. Its first part focuses on HCV elimination and the strategies necessary to achieve that goal; the second presents arguments supporting our approach and choice of methods. Chapter 2 presents our goals. MRC framework phase I Chapter 3 describes our development of a behavioral counselling intervention. We worked with the concept of scaling-out, i.e., the process of improving the intervention’s fit to a new context while maintaining its effectiveness [23]. This approach was influenced by our increased awareness of implementation research and the importance of “putting evidence into practice” [24]. The adaptation process was guided by the Intervention Map-ping (IM) Adapt approach [25] and a contextual analysis. At many steps, broad stake-holder involvement helped us discover the needed changes. The adapted intervention was called HCVree and me. MRC framework Phase II The project’s second phase focused on the evaluation of the HCVree and me feasibility test. We were especially interested in how the intervention worked in practice and to use this knowledge for further improvement when considering scalability [26, 27]. We used mixed methods, with methods chosen as appropriate for each evaluation question [26]. In the Swiss HCVree Trial, the decision was made to invite only men who reported in-consistent condom use with non-steady partners (nsCAI) in the previous year. In chapter 4, we examined the appropriateness of using this selection criterion for the behavioral intervention in 118 of our 122-man sample. We analyzed their self-reported sexual and drug use behaviors at baseline. While 72 (61%) qualified for the intervention, other po-tential HCV transmission risk behaviors were also frequent, e.g., 52 (44%) had used drugs, 44 (37%) reported sexualized drug use and 17 (14%) had injected drugs. This finding highlighted that the chosen screening question had excluded numerous men who indicated a need to develop prevention-centered behaviors. Chapter 5 reports the results of a qualitative study in the behavioral intervention’s par-ticipants. For this, our aim was to understand the intervention program’s meaning for participants regarding their sexuality and risk behaviors. One-third of participants (n=17) agreed to semi-structured interviews. The narratives revealed one constitutive theme: Giving hepatitis C a place and living without it again, illustrating first how participants positioned themselves to the program and thereafter their sense-making work in relation to it. All participants responded to the intervention program, but with considerable variation. Therefore, we differentiated three sense-making work: Avoid risks: get rid of hepatitis C for life; Minimize risks: live as long as possible without hepatitis C; and Accept risk: live with the risk of hepatitis C. This work summed up not only the range of the participants’ various responses to the intervention but also their later management of sexual risks. Also, regardless of their responses to the behavioral counselling intervention, the results also revealed that treatment had had a significant influence on their sense-making. The fourth article, described in chapter 6, built on these sense-making groups. This study’s aim was to validate that the three groups also differed in the content of sexual risk reduction goal-setting and behavior change. To achieve this, we conducted a con-vergent mixed-method study. The qualitative analysis identified seven domains reflecting broader risk reduction strategies; the quantitative analysis largely supported the differ-entiation of the groups. The merged data validated our hypothesis. This finding is im-portant because the qualitatively generated sense-making work groups can now be used to inform further intervention development and tailoring. However, the analysis also indi-cated that our quantitative instrument was sub-optimal for measuring initiated diverse risk reduction strategies and emphasizes the need for better outcome variables/questionnaire items. Chapter 7 presents a synthesis and discussion of the results, particularly three key find-ings. We begin by describing how the innovative combination of traditional and newer implementation frameworks facilitated the intervention’s successful scaling-out. Follow-ing the feasibility test, we identified and described the participants’ various responses regarding their sense-making work. The resulting groups reflected the diversity of their experiences with both the behavioral intervention and the DAA treatment. The chapter ends with an explanation of how the participants’ dynamic sexual behavior influenced not only our interpretation of evaluation findings but also the need for further adaptations to the intervention. These studies’ findings highlighted various implications for future research and clinical practice. As a next step, we recommend revising the intervention according to the results of our evaluation, then preparing for the next trial—particularly to better cover sexualized drug use behaviors. For clinical practice, we recommend encouraging joint discussion within clinical teams to raise awareness of potential reinfection-related stigma, of assess-ment of problematic sexualized drug use behaviors and of how to use clinical appoint-ments as teachable moments. This will certainly impact patient-centered care and will very likely also improve patient outcomes

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

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

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.; To explore self-management tasks in view of medical, role-related, and emotional tasks in LTx candidates and recipients and their respective close caregivers.; 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.; 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.; 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