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The ERN ITHACA (European reference network for rare malformation syndromes and rare intellectual and neurodevelopmental disorders) Patient Workshop 2024, held on December 12th in Bucharest, Romania, brought together over 70 participants (healthcare providers and patient advocates), to enhance support for individuals with rare genetic diseases. The workshop featured two key segments: Best Practice Sharing, highlighting innovative projects and success stories within the ERN ITHACA patient network, and The Patient Journey, which explored the emotional and psychological challenges faced by patients and families. Breakout discussions focused on building family resilience and addressing grief. Participant feedback was overwhelmingly positive, with a 4.68/5 satisfaction rating, and suggestions for improvement included more interactive exercises and extended workshop duration. The event underscored the importance of collaboration in advancing patient-centred care and will serve as a foundation for the next Patient workshop within ERN ITHACA in December 2025 in Bergen, Norway.

Background: Acquired neurological diseases significantly alter the dynamics between patients and their caregiving relatives, particularly spouses. This study investigates how these disorders impact the patient-spouse relationship and assesses the role of healthcare professionals in shaping these dynamics during long-term rehabilitation. Methods: We conducted three comprehensive, in-depth sequential analyses that focused on (1) patients, (2) spouses, and (3) both partners within their relationship. Using a dynamic interactionist approach, narrative interviews with couples provided insights from both partners on relationship dynamics. Data analysis followed the documentary method, emphasizing socio-genetic type building to classify patient, caregiver, and relationship types. Results: We identified four patient types, four caregiver types, and three relationship types, each with distinct social interaction patterns and specific rehabilitation needs. Our model, based on symbolic interactionism and Baxter's Relational Dialectics Theory, underscores the fluid and evolving nature of these roles. Patients and caregivers can transition between different types due to the chronic nature of the disorder and the social context of rehabilitation. Recognizing these shifts is essential for addressing relational and social aspects in therapy. Conclusion: The findings highlight the necessity of acknowledging the dynamic and varied needs of patients and caregivers as well as the relationship dynamics. By understanding relationship types and interactions, healthcare professionals can develop personalized therapeutic strategies that enhance patient- and family-centred care, vital for improving rehabilitation outcomes.

Summary: Platform trials bring the promise of making clinical research more efficient and more patient centric. While their use has become more widespread, including their prominent role during the COVID-19 pandemic response, broader adoption of platform trials has been limited by the lack of experience and tools to navigate the critical upfront planning required to launch such collaborative studies. The European Union-Patient-cEntric clinicAl tRial pLatform (EU-PEARL) initiative has produced new methodologies to expand the use of platform trials with an overarching infrastructure and services embedded into Integrated Research Platforms (IRPs), in collaboration with patient representatives and through consultation with U.S. Food and Drug Administration and European Medicines Agency stakeholders. In this narrative review, we discuss the outlook for platform trials in Europe, including challenges related to infrastructure, design, adaptations, data sharing and regulation. Documents derived from the EU-PEARL project, alongside a literature search including PubMed and relevant grey literature (e.g., guidance from regulatory agencies and health technology agencies) were used as sources for a multi-stage collaborative process through which the 10 more important points based on lessons drawn from the EU-PEARL project were developed and summarised as guidance for the setup of platform trials. We conclude that early involvement of critical stakeholder such as regulatory agencies or patients are critical steps in the implementation and later acceptance of platform trials. Addressing these gaps will be critical for attaining the full potential of platform trials for patients. Funding: Innovative Medicines Initiative 2 Joint Undertaking with support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.

Objectives: The current study sought to evaluate the communication skills of Iraqi physicians from a patient perspective, differentiating between “interpersonal” and “content” components of communication. In the past century, the doctor–patient relationship has changed considerably, shifting from a paternalistic, physician-dominated approach to a more dynamic and patient-centered. In such a context, effective communication skills have become even more crucial for good medical practice and most accreditation organizations urge medical schools to teach and evaluate communication skills. Methods: A cross-sectional study was conducted at Baghdad Teaching Hospital's three major departments (Surgery, Medicine, Obs/ Gyne). The final sample included 270 participants. A factor analysis was performed and generated two dimensions (''interpersonal'' and ''content''). Statistical differences between the groups and between the two dimensions of the questionnaire were analysed through t-tests and ANOVA. In addition, a multiple linear regression model was used to study the effect of some variables on the dependent variable ''communication''. Results: The study showed a significant difference between “interpersonal” and “content” communication, with patients reporting higher satisfaction for the former. Reported satisfaction rates varied amongst the three departments with the Surgery specialty scoring significantly lower than the Medicine and the Obs/Gyne department. The duration of care under the current physician, a higher rank of specialty and the settings (inpatients versus outpatients) were positively and significantly associated with a higher quality of communication skills. Conclusions: These findings have significant implications for training institutions.

Background: Patient-centred trial design optimises recruitment and retention, reduces trial failure rates and increases the diversity of trial cohorts. This allows safe and effective treatments to reach clinic more quickly. To achieve this, patients' views must be incorporated into trial design., Methods: A discrete choice experiment was used to quantify preferences of pwCF for trials features; medicine type, trial location, stipend, washout, drug access on trial completion and trial design. Respondents were presented pairs of hypothetical trial scenarios with different level combinations assigned through experimental design. Respondents were asked to pick their preferred option or decline both. The cross-sectional data were explored using a Random Parameters Logit model., Results: We received 207 eligible responses between Oct2020-Jan2021. The strongest influence on the decision to participate was trial location; pwCF favour participation at their usual clinical centre. Greater travel distances made respondents less willing to participate. Post-trial drug access ranked second. pwCF would rather participate in modulator trials than trials of other drugs. In general, pwCF did not favour a washout period, but were more prepared to washout non-modulators than modulators. Stipend provision was not ranked highly, but higher stipends increased intention to participate. Trial design (placebo vs open-label) had minimal influence on the decision to participate. There are complex interactions between placebos and washouts., Conclusions: We used quantitative methods to systematically elicit preferences of pwCF for clinical trials' features. We explore the relevance of our findings to trial design and delivery in the current CF trials landscape., Competing Interests: Declaration of Competing Interest JCD has performed clinical trial leadership roles, educational and/ or advisory activities for the following: Abbvie, Algipharma AS, Bayer AG, Boehringer Ingelheim Pharma GmbH & Co. KG, Eloxx, Enterprise, Galapagos NV, Genentech, ImevaX GmbH, Ionis, LifeArc, Nivalis Therapeutics, Inc., Krystal Biotech, Novartis, PARI Medical Holding GmbH, ProQR Therapeutics III B.V., Proteostasis Therapeutics INC., Pulmocide, Raptor Pharmaceuticals Inc, Recode, Vertex Pharmaceuticals. JSE has provided consultancy and advice for Vertex, Celtaxsys, Corbus, Ionis in clinical trial design and delivery. He also holds an EU Innovative medicines Initiative grant with Novartis, Polyphor and Alaxia. MB, RD, FK and SM have no conflicts to declare., (Copyright © 2023. Published by Elsevier B.V.)

Systemic sclerosis (SSc) is a heterogenous systemic autoimmune disease of complex multi-organ manifestations with a disease-specific mortality of >50%. The patient journey is fraught with severe, diverse, and diffuse physical impairment, psychological burden, and diminishing health-related quality of life. SSc remains unfamiliar to many clinicians. Delayed/misdiagnosis, inadequate screening, and attention for common complications with potentially preventable disability/death contribute to patients feeling isolated and unsupported. We present actionable standards including screening, anticipatory guidance, and counseling in patient-centered SSc-care emphasizing psycho-social health as the central goal, whereas robust vigilance and efforts to improve biophysical health and survival are imperatives that support this goal., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objectives: To identify key attributes of healthcare quality relevant to patients and kin and to compare them to Lachman's multidimensional quality model., Methods: Four focus groups with patients and kin were conducted using a semi-structured interview guide and a purposive sampling method. Classical content analysis and constant comparison method were used to focus data analysis on individual and group level., Results: Communication with patients, kin and professionals emerged as a new dimension from interview transcripts. Other identified key attributes largely corresponded with Lachman's multidimensional quality model. They were mainly classified in dimensions: 'Partnership and Co-Production', 'Dignity and Respect' and 'Effectiveness'. Technical quality dimensions were linked to organisational aspects of care in terms of staffing levels and time. The dimension 'Eco-friendly' was not addressed by patients or kin., Conclusions: The results enhance the comprehension of healthcare quality and contribute to its academic understanding by validating Lachman's multidimensional quality model from patients' and kin's perspective. The model robustness is increased by including communication as a quality dimension surrounding technical domains and core values., Practice Implications: The key attributes can serve as a holistic framework for healthcare organisations to design their quality management system. An instrument can be developed to measure key attributes., Competing Interests: Conflicts of interest No competing interests to declare., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Objective: The purpose of this study was to provide an overview of existing methods used to develop a Question Prompt List (QPL) for an oncology setting., Methods: We conducted a search of the literature published between 1999 and 2019 in five online databases followed by a hand search, and extracted data on the methods used to develop a QPL., Results: A total of 21 studies were included. The review shows differences in the development of older QPLs (1999-2009) and current QPLs (2010-2019). However, most QPLs were developed using interviews or focus groups with patients and an expert session to review or adapt the QPL. Health professionals, patients, and researchers were included in nearly all the studies., Conclusion: To develop a QPL, it is important to combine several information sources and at least to involve health professionals, patients, and researchers in the development process. Review or evaluation steps can improve the appropriateness and acceptance of a QPL., Practice Implications: Further research is needed to define the type of target population for new QPLs and to develop a framework for their development., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Objective: The importance of ensuring that patients understand and remember information from rheumatology consultations is well recognised. However, literature focuses on 'one-size-fits-all' information resources. In this qualitative study our 'upclose, in-depth, inside-out' exploration sought to understand the personalised written consultation summary, a rheumatologist's patient-centred strategy developed through ongoing reflection., Methods: A research team of a rheumatologist, practice nurse, two patients, registrar and researcher used a participatory research approach, collaborative inquiry Semistructured interviews were undertaken with 29 patients. Data analysis was dialogical and iterative, moving from descriptive to conceptual., Results: Implicit within the personalised written consultation summary were domains and actions of: INVOLVEMENT in the process (contributing to the content, clarifying and negotiating the content, being present as it is written), CONTINUITY of information (taking the summary, sharing it with others, storing it at home) and SECURITY for ongoing management (owning the summary, being reminded about management plans, having a basis for re-checking)., Conclusion: Aligned with the findings are patient-centred intentions for health literacy, personal health information management and medication adherence. The second highlights an important theoretical basis for patient-centred rheumatology strategies beyond consultations., Practice Implications: A model and reflective questions are presented to inform ongoing reflections about patient-centred information strategies., (Copyright © 2021. Published by Elsevier B.V.)

Objectives: Self-management of patients with advanced cancer is challenging. Although healthcare professionals may play a crucial role in supporting these patients, scant scientific attention has been paid to their perspectives. Therefore, we examined healthcare professionals' views on self-management and self-management support in this population., Methods: We conducted qualitative interviews with 27 purposively sampled medical specialists (n = 6), nurse specialists (n = 6), general practitioners (n = 8) and homecare/ hospice nurses (n = 7) in the Netherlands. Transcripts were analysed using thematic analysis., Results: Healthcare professionals experienced self-management of patients with advanced cancer to be diverse, dynamic and challenging. They adopted instructive, collaborative and advisory roles in self-management support for this population. Whereas some professionals preferred or inclined towards one role, others indicated to switch roles, depending on the situation., Conclusions: Just like patients with advanced cancer, healthcare professionals differ in their views and approaches regarding self-management and self-management support in this population. Therefore, instructive, collaborative and advisory self-management support roles will all be useful under certain circumstances., Practice Implications: Healthcare professionals can support self-management by being aware of their own views and communicating these clearly to their patients and colleagues. Education in self-management support should include self-reflection skills and discuss the relation between self-management and professional care., Competing Interests: Declaration of competing interest The authors (SD, RS, LK, HN, FW, CR, AH and JR) declare no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (Copyright © 2021 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: Hypnosis in labour and childbirth is a complex intervention. Both qualitative and quantitative assessment methods have been used, but have targeted different outcomes. We followed a synergistic approach and a reconciliation strategy to further understand and evaluate this intervention., Methods: A mixed-method analysis of quantitative and qualitative evidence was conducted. The assessment of efficacy was based on a recent Cochrane review (9 trials, 2954 women randomised). Four qualitative studies and 4 case studies were included., Results: The outcomes addressed by the qualitative studies (mostly concerning maternal experiences) and in the quantitative studies (mostly concerning analgesic use) overlapped slightly. Discrepancies across results from the two study types suggested that response shift issues could occur., Conclusion: Patient-centred instruments exploring response shift issues would be of great value. Hypnosis can be presented as a technique enabling patients to have a positive birth experience., (Copyright © 2021. Published by Elsevier Ltd.)

Models of Care (MoCs), and their local Models of Service Delivery, for people with musculoskeletal conditions are becoming an acceptable way of supporting effective implementation of value-based care. MoCs can support the quadruple aim of value-based care through providing people with musculoskeletal disease improved access to health services, better health outcomes and satisfactory experience of their healthcare; ensure the health professionals involved are experiencing satisfaction in delivering such care and health system resources are better utilised. Implementation of MoCs is relevant at the levels of clinical practice (micro), service delivery organisations (meso) and health system (macro) levels. The development, implementation and evaluation of MoCs has evolved over the last decade to more purposively engage people with lived experience of their condition, to operationalise the Chronic Care Model and to employ innovative solutions. This paper explores how MoCs have evolved and are supporting the delivery of value-based care in health systems., Competing Interests: Declaration of Competing Interest The authors declare no conflicts of interest., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Objective: To develop psychometrically an evidence-based, patient-centred measure of patient-practitioner communication. We explored the underlying constructs of a self-report questionnaire measuring adult patients' enduring perceptions of their emotional experiences when communicating with primary healthcare practitioners., Methods: A cross-sectional on-line survey included 16 items from a piloted questionnaire, as well as existing measures of generalised anxiety, psychological distress, and body vigilance. Exploratory factor analysis and hierarchical multiple regression were used to explore underlying constructs in an Australian sample (N = 220)., Results: A 6-item communication distress factor and a 3-item environmental arousal factor were supported, indicating good face validity and internal consistency. Bivariate correlations support convergent and discriminant validity for both factors. Hierarchical analysis exploring predictors of communication distress included sex, age, and chronic condition status; and scores on body vigilance, anxiety, distress, and environmental arousal in healthcare. Environmental arousal was the most important significant predictor of communication distress., Conclusion: The patient communication questionnaire can be developed into a brief scale to measure patient distress associated with engaging with, and communicating in, healthcare settings., Practice Implications: A brief self-report measure to identify patients' communication distress and environmental arousal could assist in clinical practice and provide useful data in healthcare communication research., Competing Interests: Declaration of Competing Interest None., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Problem: Despite the known prevalence of complementary medicine use by women during pregnancy and childbirth and the evolution of preferred models of maternity care, very little is known about the nature and characteristics of the care provided to women by complementary medicine practitioners during this important life stage., Background: Woman-centred care is a speciation of person-centred care which has achieved prominence in maternity care policy in recent years. There is also evidence that the core principles of some complementary medicine systems of medicine emphasise patient-centredness and that these principles are core drivers toward complementary medicine use in multiple populations., Aim: This study aims to explore the approach to care delivered by complementary medicine practitioners to women during pregnancy and birth., Methods: Semi-structured individual interviews were conducted with 23 complementary medicine practitioners who identified as specialising in maternity care. Data from the interviews were analysed using a framework approach., Findings: The analysis of the perspective of complementary medicine practitioner's experiences providing care to pregnant and birthing women identified three main themes: Responding to women's expectations of care; providing woman-centred care; and the therapeutic relationship at the heart of woman-centred care., Discussion: The approach to maternity care reported by complementary medicine practitioners aligns with the principles of woman-centred care, possibly due to the similarities between woman-centred care and the core features of many systems of medicine within complementary medicine., Conclusion: Complementary medicine practitioners may contribute to an overall experience of woman-centred maternity care for pregnant and birthing women., (Copyright © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Introduction: Patient-centredness is considered integral to the delivery of modern healthcare. This qualitative, longitudinal study explored the meaning and development of the practice of pharmacy graduates, leading to a focus on patient-centredness. The approach adopted in this study aligned with the principles of hermeneutic phenomenology., Methods: Twelve pharmacy graduates (seven females) from The University of Queensland were observed at work and interviewed about their experiences of pharmacy practice every six months for two years following graduation., Results: These 12 graduates initially understood and enacted pharmacy practice in a range of ways. A distinguishing characteristic related to how patients/customers featured in their practice. For some, ensuring the efficient supply or administration of correct and safe medicines with instructions was the focus, with patients viewed as source and recipient of information. For others, the focus was communicating effectively with patients/customers to provide individualised advice to avoid medication-related problems. A third group focused on achieving a broader goal, to provide individualised care to optimise health outcomes from medicines. Initial understanding of patient-centredness remained largely unchanged for most participants over the two years, despite the passage of time and experience gained., Conclusions: This study calls into question an assumption of a common meaning for patient-centredness. The findings highlight the need to question and debate what patient-centredness means in contemporary pharmacy practice, rather than simply being an aspirational or theoretical concept. It is important that pharmacists and educators appreciate the centrality of understanding of practice for development, to optimally facilitate the development of patient-centred pharmacists., Competing Interests: Declaration of competing interest None., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: Describe the characteristics (development, intensity, deliverers, setting, strategies) and assess the effect of salutogenic-oriented lifestyle interventions on physical and psychosocial health outcomes in adults with type 2 diabetes mellitus (T2DM)., Method: PubMed, Scopus and PsycINFO were systematically searched for randomised controlled trials (RCTs) published up to August 2019 that complied with predefined salutogenic criteria: the participant as a whole, the participant's active involvement and the participant's individual learning process. Characteristics of the salutogenic-oriented interventions with and without significant results were compared and qualitatively summarised., Results: Twenty-eight RCTs were identified. Salutogenic oriented interventions that significantly improved both physical and psychosocial health were characterized by being based on formative research, culturally targeted, and delivered in 10-20 sessions in group settings, whereas salutogenic oriented interventions that neither improved physical or psychosocial health significantly were characterized by being individually tailored and delivered in less than 10 group sessions in individual settings., Conclusions: This systematic review suggests that salutogenic-oriented lifestyle interventions are effective for physical and psychosocial health in the short term. More research is needed to determine how intervention characteristics moderate (long-term) effectiveness., Practice Implications: The results provide a basis for purposefully developing effective salutogenic interventions for adults with T2DM., Competing Interests: Declaration of Competing Interest The authors declare that there are no conflicts of interest., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objectives: To evaluate the sequential organ failure assessment (SOFA) and modified SOFA (mSOFA) scoring and a novel performance score based on the Karnofsky score for measuring outcome following a bloodstream infection (BSI)., Method: This prospective observational cohort study assessed patients with BSI for mortality and functional outcomes with a novel performance score: the functional bloodstream infection score (FBIS). We also tested the SOFA and, given the difficulties with measuring SOFA on ward-based patients, the mSOFA over the first 7 days following a BSI for their association with outcomes., Results: One hundred participants were prospectively recruited. Mortality at 52 weeks following BSI was 21% (21/100). Only 57% of survivors (39/69) were at their baseline functional status at 52 weeks. Stable or improved SOFA/mSOFA over the first 7 days was associated with survival and return to premorbid performance score (risk ratio 3.2, 95%CI 1.3-9.4, p < 0.01)., Conclusions: The acute change in SOFA/mSOFA was associated with 52-week survival and return to premorbid functional performance. The FBIS measurement represents a simple and easy-to-apply measure of functional performance for patients with BSI and was associated with a high response rate (89%) from participants., (Copyright © 2019 European Society of Clinical Microbiology and Infectious Diseases. Published by Elsevier Ltd. All rights reserved.)

Commercial gamete donation in Canada is prohibited by the Assisted Human Reproduction Act. However, the Act permits gamete recipients to reimburse donors for donation-related expenses. Until recently, the types of expenses that were eligible and the process for reimbursing donors were not specified. In 2016, Health Canada announced its intent to develop regulations that would regulate gamete donor reimbursement; it released the proposed policy in 2017. As a result of consultations with Canadian lawmakers, physicians, and patients, debates surrounding commercial gamete donation are being revisited. Considering the ethical implications of gamete donation payment arrangements, a patient-centred care framework is useful going forward in the regulation of this practice. Patient-centred values of communication, respecting relational autonomy, and respecting patient interests should guide decisions regarding regulation of gamete donation arrangements in Canada., (Copyright © 2019 The Society of Obstetricians and Gynaecologists of Canada/La Société des obstétriciens et gynécologues du Canada. Published by Elsevier Inc. All rights reserved.)

Objectives: The primary aim of this pilot study was to determine the feasibility of conducting a mixed- methods study assessing the extent patients with chronic health conditions perceive chiropractic care to be patient-centred., Design: A sequential mixed methods feasibility study with a quantitative priority., Setting: Two private chiropractic clinics in Calgary, Alberta, Canada., Main Outcome Measures: Feasibility outcomes included pilot study participation, consent and completion rates. Demographic and health information and a modified version of the Patient Assessment of Chronic Illness Care (PACIC)., Results: Over three weeks, 90 participants were recruited, 86 enrolled, and 78 provided complete data, with only one who commented on the clarity of paperwork. Included participants were on average 47.1 years of age and 60.3% were female. They had an average of 1.8 chronic conditions with 60% having chronic spinal pain. They reported seeing an average of 2.9 other health professionals for their chronic health condition and averaged 12.9 chiropractic visits in the past year. The average overall modified PACIC score was 3.29 on a 5-point scale. Higher scores were seen on the 'patient activation', 'delivery system design/decision support', and 'problem solving/contextual' subscales, with lower scores seen on the 'goal-setting/tailoring' and 'follow-up/coordination' subscales. Interview data generally supported those findings., Conclusions: The pilot study results support the feasibility of the methods for a subsequent large-scale study. These preliminary results suggest that the degree of patient-centredness compares favourably to similar studies in primary medical care., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Purpose: This study evaluates the quality of information available on the internet for carers of children with epilepsy considering treatment with Vagus Nerve Stimulation (VNS)., Methods: Selected key phrases were entered into two popular search engines (Google™, Yahoo™). These phrases were: "Vagus nerve stimulator", alone and in combination with "childhood epilepsy", "paediatric epilepsy" and "epilepsy in childhood"; "VNS", and "VNS epilepsy". The first 50 hits per search were then screened. Of 600 identified sites, duplicated (262), irrelevant (230) and inaccessible (15) results were excluded. 93 websites were identified for evaluation using the DISCERN instrument, an online validation tool for patient information websites., Results: The mean DISCERN score of all analysed websites was 39/80 (49%; SD 13.5). This equates to Fair to borderline Poor global quality, (Excellent=80-63; Good=62-51; Fair=50-39; Poor=38-27; Very poor=26-15). None of the analysed sites obtained an Excellent quality rating. 13% (12) obtained a Good score, 40% (37) obtained an Average score, 35% (33) obtained a Poor score, and 12% (11) obtained a Very poor score. The cohort of websites scored particularly poorly on assessment of whether reliable, holistic information was presented, for instance provision of reliable sources, (28%, SD 18) and discussion of alternative treatments, (30%, SD 14)., Conclusion: To facilitate patient-centred shared decision-making, high quality information needs to be available for patients and families considering VNS. This study identifies that such information is difficult to locate on the internet. There is a need to develop focussed and reliable online patient resources for VNS., (Copyright © 2017 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Background & Aims: Given an appreciable risk of adverse-effects, current therapies for chronic hepatitis C virus (HCV) infection pose a dilemma to patients. We explored, via simulation modelling, patient-important benefits of attaining a sustained viral response (SVR)., Methods: We created the HCV Individualised Treatment-decision model (the HIT-model) to simulate, on a per patient basis, the lifetime course of HCV-related liver disease according to two distinct scenarios: (i) SVR attained, and (ii) SVR not attained. Then, for each model subject, the course of liver disease under these alternative scenarios was compared. The benefit of SVR was considered in terms of two patient-important outcomes: (1) the percent-probability that SVR confers additional life-years, and (2) the percent-probability that SVR confers additional healthy life-years, where "healthy" refers to years spent in compensated disease states (i.e., the avoidance of liver failure)., Results: The benefit of SVR varied strikingly. It was lowest for patients aged 60 years with initially mild fibrosis; 1.6% (95% CI: 0.8-2.7) and 2.9% (95% CI: 1.5-4.7) probability of gaining life-years and healthy life-years, respectively. Whereas it was highest for patients with initially compensated cirrhosis aged 30 years; 57.9% (95% CI: 46.0-69.0) and 67.1% (95% CI: 54.1-78.2) probability of gaining life-years and healthy life-years, respectively., Conclusions: For older patients with less advanced liver fibrosis, SVR is less likely to confer benefit when measured in terms of averting liver failure and premature death. These data have important implications. Foremost, it may inform the contemporary patient dilemma of immediate treatment with existing therapies (that have poor adverse effect profiles) vs. awaiting future regimens that promise better tolerability., (Copyright © 2014 European Association for the Study of the Liver. Published by Elsevier B.V. All rights reserved.)