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This research is very timely given Ireland's recent ratification of the UN Convention on the Rights of Persons with Disabilities, the imminent full commencement of the Assisted Decision Making (Capacity) Act, 2015 together with proposed legislation dealing with Deprivation of Liberty.1 Although the sample in the study is small, it offers valuable insights into the referral of, and pathways into nursing homes for younger people with disabilities. Whilst law and policy are centred on the enabling of people with disabilities to live the lives of their choosing in the community, the report notes that the supports to enable them to do so 'are underdeveloped, unplanned and often not sufficient to meet their needs'. Instead of taking a human rights based, social model approach, which would look to the person's will and preference, there is an overemphasis on the medical model in the assessment form. There is little focus on a person's abilities, capabilities or on options for care in the community. Indeed a person's preference for care seems to have been poorly recorded or not recorded at all. The research makes it clear that younger people with disabilities do not often have a meaningful say in decisions that profoundly affect and impact their lives, rather their referral to nursing homes is defined by their level of functioning. The vast majority of these people, who enter nursing homes remain there without assistance to achieve an outcome of living independently and without really being in control of their own lives. The report concludes with some very good and practical recommendations for both government and practice. These include adopting a personalised approach to the assessment and care of younger people with disabilities, and a commitment to exhaust all possibilities with the person centrally involved, assisted where necessary, before nursing home care is considered. We hope that government and the Department of Health will take the time to review the findings and recommendations of the report, and to take ...

This report is the first in a series of inequality reports to be issued by Columbia World Projects (CWP), summarizing expert discussions held on different aspects of economic inequality, in an effort to identify concrete, implementable ideas for how academics and practitioners might partner to better understand and address the challenge. CWP intends to hold a number of convenings on this subject over the next several years, given the complex and critical nature of the problems associated with inequality in the world today . This first expert discussion or "Forum" on the subject was focused on the relationship between inequality and unequal opportunity. There are certain levels of economic inequality that are so severe that they deprive people not only of a path to greater mobility, but also of a range of basic resources – such as housing, education, labor, and health – that can close off opportunities all people should have, regardless of their level of wealth or income. Such unequal access may begin to limit an individual's opportunities as early as when she is still in the womb and has the capacity to produce negative outcomes that last a lifetime, or even across generations. Thus, on June 19, 2018, more than 30 experts from government, multilateral institutions, nongovernmental and philanthropic organizations, the private sector, the media, and academia, among other fields, came together to discuss concrete ideas for how to make headway against unacceptable, unequal access, how to scale such solutions more broadly, and how to provide a foundation for shifts in government policy where results are proven. The structure of this report follows the sequence of the Forum itself: It begins by summarizing the main insights on the challenge that emerged in the opening discussion (Section III); then it provides an overview of the project ideas that were discussed when the Forum's participants broke out into thematic working groups(Section IV); and it concludes with the closing plenary, in which participants expressed their views on which ideas were most promising (Section V).

Introduction: Colorectal cancer is one of the most frequently diagnosed malignancies and a common cause of cancer-related mortality. The aim of this study was to develop and validate a clinical predictive model for1-year mortality among patients with colon cancer who survive for at least 30 days after surgery. Methods: Patients diagnosed with colon cancer who had surgery for the first time and who survived 30 days after the surgery were selected prospectively. The outcome was mortality within 1 year. Random forest, genetic algorithms and classification and regression trees were combined in order to identify the variables and partition points that optimally classify patients by risk of mortality. The resulting decision tree was categorized into four risk categories. Split-sample and bootstrap validation were performed. Results: A total of 1945 patients were enrolled in the study. The variables identified as the main predictors of 1-year mortality were presence of residual tumour, ASA risk score, pathological tumour staging, Charlson comorbidity index, intraoperative complications, adjuvant chemotherapy and recurrence of tumour. The model was internally validated; the area under the curve (AUC) was 0.896 in the derivation sample and 0.835 in the validation sample. Risk categorization leads to AUC values of 0.875 and 0.832 in the derivation and validation samples, respectively. Optimal cut-off point of estimated risk had a sensitivity of 0.889 and a specificity of 0.758. Conclusions: The decision-tree was a simple, interpretable, valid and accurate prediction rule of 1-year mortality among colon cancer patients who survived for at least 30 days after surgery. ; Instituto de Salud Carlos III (PS09/00314, PS09/00910, PS09/00746, PS09/00805, PI09/90460, PI09/90490, PI09/90453, PI09/90441, PI09/90397 and the thematic networks REDISSEC - Red de Investigación en Servicios de Salud en Enfermedades Crónicas), co-funded by European Regional Development Fund/European Social Fund (ERDF/ESF "Investing in your future"); Research Committee of the Hospital Galdakao Department of Health and the Department of Education, Language Policy and Culture from the Basque Government (2010111098, IT620-13) MINECO and FEDER (MTM2013-40941-P, MTM2016-74931-P).

BACKGROUND: Tools to aid in the prognosis assessment of colon cancer patients in terms of risk of mortality are needed. Goals of this study are to develop and validate clinical prediction rules for 1- and 2-year mortality in these patients. METHODS: This is a prospective cohort study of patients diagnosed with colon cancer who underwent surgery at 22 hospitals. The main outcomes were mortality at 1 and 2 years after surgery. Background, clinical parameters, and diagnostic tests findings were evaluated as possible predictors. Multivariable multilevel logistic regression and survival models were used in the analyses to create the clinical prediction rules. Models developed in the derivation sample were validated in another sample of the study. RESULTS: American Society of Anesthesiologists Physical Status Classification System (ASA), Charlson comorbidity index (> = 4), age (>75 years), residual tumor (R2), TNM stage IV and log of lymph nodes ratio (> = -0.53) were predictors of 1-year mortality (C-index (95% CI): 0.865 (0.792-0.938)). Adjuvant chemotherapy was an additional predictor. Again ASA, Charlson Index (> = 4), age (>75 years), log of lymph nodes ratio (> = -0.53), TNM, and residual tumor were predictors of 2-year mortality (C-index:0.821 (0.766-0.876). Chemotherapy was also an additional predictor. CONCLUSIONS: These clinical prediction rules show very good predictive abilities of one and two years survival and provide clinicians and patients with an easy and quick-to-use decision tool for use in the clinical decision process while the patient is still in the index admission. ; This work was supported in part by grants from the Instituto de Salud Carlos III and by the European Regional Development Funds-ERDF (PS09/00314, PS09/00910, PS09/00746, PS09/00805, PI09/90460, PI09/90490, PI09/90453, PI09/90441, PI09/90397); Department of Health of the Basque Country (2010111098); the Research Committee of the Hospital Galdakao; and the thematic networks REDISSEC (Red de Investigación en Servicios de Salud en Enfermedades Crónicas)-of the Instituto de Salud Carlos III RD12/0001/0001 and Education, Politic Linguistic and Culture of the Basque Government IT620-13. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. ; Sí

This work was funded by a Scottish Medical Education Research Consortium grant. ; Objectives: To explore the reasons that doctors choose to leave UK medicine after their foundation year two posts. Setting : All four regions of Scotland. Participants: Foundation year two doctors (F2s) working throughout Scotland who were considering leaving UK medicine after foundation training were recruited on a volunteer basis. Maximum variation between participants was sought. Primary and secondary outcome measures: Semistructured interviews were coded using template analysis. Six perspectives, described by Feldman and Ng, were used as the initial coding template. The codes were then configured to form a framework that explores the interplay of factors influencing Foundation Year 2 (F2) doctors' decisions to leave UK medicine. Results: Seventeen participants were interviewed. Six perspectives were explored. Structural influences (countrywide and worldwide issues) included visas, economic and political considerations, structure of healthcare systems and availability of junior doctor jobs worldwide. Organisational influences (the National Health Service (NHS) and other healthcare providers) included staffing and compensation policies, the working environment and the learning environment. Occupational influences (specific to being a junior doctor) comprised the junior doctor contract, role and workload, pursuit of career interests and the structure of training. Work group influences (relationships with colleagues) included support at work, task interdependence and use of locums. Personal life influences consisted of work-life balance, and support in resolving work-life conflict. The underlying theme of 'taking a break' recurred through multiple narratives. Conclusions: F2s give reasons similar to those given by any professional considering a change in their job. However, working within the NHS as an F2 doctor brought specific challenges, such as a need to make a choice of specialty within the F2 year, exposure to workplace bullying and difficulties in raising concerns. Despite these challenges, most F2s did not view their decision to leave as a permanent job change, but as a temporary break from their current working lives. ; Publisher PDF ; Peer reviewed

This research is very timely given Ireland's recent ratification of the UN Convention on the Rights of Persons with Disabilities, the imminent full commencement of the Assisted Decision Making (Capacity) Act, 2015 together with proposed legislation dealing with Deprivation of Liberty. Although the sample in the study is small, it offers valuable insights into the referral of, and pathways into nursing homes for younger people with disabilities. Whilst law and policy are centred on the enabling of people with disabilities to live the lives of their choosing in the community, the report notes that the supports to enable them to do so 'are underdeveloped, unplanned and often not sufficient to meet their needs'. Instead of taking a human rights based, social model approach, which would look to the person's will and preference, there is an overemphasis on the medical model in the assessment form. There is little focus on a person's abilities, capabilities or on options for care in the community. Indeed a person's preference for care seems to have been poorly recorded or not recorded at all. The research makes it clear that younger people with disabilities do not often have a meaningful say in decisions that profoundly affect and impact their lives, rather their referral to nursing homes is defined by their level of functioning. The vast majority of these people, who enter nursing homes remain there without assistance to achieve an outcome of living independently and without really being in control of their own lives. The report concludes with some very good and practical recommendations for both government and practice. These include adopting a personalised approach to the assessment and care of younger people with disabilities, and a commitment to exhaust all possibilities with the person centrally involved, assisted where necessary, before nursing home care is considered. We hope that government and the Department of Health will take the time to review the findings and recommendations of the report, and to take the ...

27 p.-4 tab. ; Background The expression of certain genes involved in response to oxidative stress is likely related to aging-related outcomes, such as frailty in old age. Given nutrition's substantial impact in aging and age-related diseases, one of its mechanisms might be through influencing gene expression. ; Objective This study aimed to investigate the association between nutrition and the expression of 15 genes related to cellular response to stress in older community-dwelling individuals. ; Methods A nested case-control study of 350 participants (mean ± SEM age: 76.5 ± 6.9 y, 42.9% men, 22% frail according to Fried's criteria) was selected from the Toledo Study for Healthy Aging. Blood-derived RNA was retro-transcribed into complementary DNA. TaqMan Arrays were used for determining gene expression. The Mini Nutritional Assessment (MNA) and the PREDIMED (PREvención con DIeta MEDiterranea) questionnaire measured nutritional status and adherence to the Mediterranean diet (MD), respectively. Data were reweighed so that inference from linear and logistic regression models applied to the original sampling population. ; Results Higher MNA scores were associated with higher expressions of the gene coding for sirtuin-1 (SIRT1), regardless of age, sex, and Charlson comorbidity score (P = 0.04) and even after adjusting for frailty status (P = 0.016) and level of adherence to the MD (P = 0.04). Malnutrition risk and SIRT1 gene expression were inversely associated (P = 0.0045) independently of frailty status (P = 0.0045) and level of adherence to the MD (P = 0.0075). ; Conclusions In older individuals, improvement in nutritional status is positively associated with SIRT1 gene expression independently of frailty status or adherence to the MD. These findings may provide potential biomarkers and targets for health interventions among the elderly. ; The research leading to these results has received funding from the European Union's Seventh Framework Programme (FP7/2007–2013) under grant agreement number 305483 (to LR-M)—FRAILOMIC Project, and from the Ministry of Economy and Competitiveness, cofinanced by FEDER funds (Instituto de Salud Carlos III), Spanish Government, grants PI15/01160 (to JA), PI15/00674 (to LR-M), and CIBERFES CB16/10/00464 (to LR-M). ; Peer reviewed

AbstractIntroductionThe concept of "therapeutic citizenship" has drawn attention to ways in which public testimony, the "story‐telling in the public sphere" undertaken by people living with HIV (PLHIV), has shaped the global response to the epidemic. This paper presents qualitative findings from two large studies in eastern Africa that reveal how the advent of population‐based HIV testing campaigns and efforts to accelerate antiretroviral "treatment for all" has precipitated a rapidly expanding therapeutic citizenship "project," or social movement. The title of this paper refers to Goffman's original conceptualization of stigma as a social process through which a person's identity is rendered "spoiled."MethodsData were derived from qualitative studies embedded within two clinical trials, Sustainable East African Research in Community Health (SEARCH) (NCT# 01864603) in Kenya and Uganda, and START‐ART (NCT# 01810289) in Uganda, which aimed to offer insights into the pathways through which outcomes across the HIV care continuum can be achieved by interventions deployed in the studies, any unanticipated consequences, and factors that influenced implementation. Qualitative in‐depth semi‐structured interviews were conducted among cohorts of adults in 2014 through 2015; across both studies and time periods, 217 interviews were conducted with 166 individuals. Theoretically informed, team‐based analytic approaches were used for the analyses.ResultsNarratives from PLHIV, who have not always been conceptualized as actors but rather usually as targets of HIV interventions, revealed strongly emergent themes related to these individuals' use of HIV biomedical resources and discourses to fashion a new, empowered subjecthood. Experiencing the benefits of antiretroviral therapy (ART) emboldens many individuals to transform their "spoiled" identities to attain new, valorized identities as "advocates for ART" in their communities. We propose that the personal revelation of what some refer to as the "gospel of ARVs," the telling of personal stories about HIV in the public sphere and actions to accompany other PLHIV on their journey into care, is driven by its power to redeem the "spoiled identity:" it permits PLHIV to overcome self‐stigma and regain full personhood within their communities.ConclusionsPLHIV are playing an unanticipated but vital role in the successful implementation of HIV care cascade interventions.

ABSTRACT
ObjectivesThe effective exploitation of what are often called big data is increasingly important. They provide the evidence in evidence-based health care and underpin scientific progress in many domains including social/economic policy. Typically, an optimal analysis involves working directly with microdata; i.e. the detailed data relating to each individual in the dataset. But there are many ethico-legal and other governance restrictions on physically sharing microdata. Furthermore, researchers or institutions may have an extensive intellectual property investment in complex microdata and although keen for other researchers to analyse their data they may not wish to give them a physical copy. These restrictions can discourage the use of optimum approaches to analysing pivotal data and slow scientific progress. Data science groups across the world are exploring privacy-protected approaches to analysing microdata without having to physically share the data.
ApproachA two day international workshop was arranged focussing on privacy protected approaches to data analysis – particularly federated analysis where raw data remain at their original site of collection. The workshop considered the range of approaches that exist, and those that are currently being developed. It explored the strengths, weaknesses, opportunities and challenges associated with these methods and identified situations where specific approaches have a particularly important role. The workshop included a number of practical sessions where potential users could watch demonstrations of the various approaches in action and run analyses themselves.
ResultsThe Data Analysis with Privacy Protection for Epidemiological Research (DAPPER) workshop was held 22-23rd August 2016, Bristol. We report back to the broader community on the outcomes of this workshop that focussed on exploring current approaches, tools and technical solutions that facilitate sensitive data to be shared and analysed.
ConclusionsThe workshop has helped map out key opportunities and challenges and assisted potential users, developers and other stakeholders (e.g. funders/journals) to recognise the strengths and weaknesses of different privacy protected analytic approaches. The workshop will encourage further methodological work in this field and better informed application of existing methods.

ABSTRACTObjectiveElectronic health records are increasingly used to investigate associations between antidiabetic therapy and cancer. Misclassification can impact results, especially if differential between comparators. The objective of this study was to estimate cancer misclassification when using primary care or hospital data alone.
ApproachAdults aged ≥40 years with an insulin or oral antidiabetic prescription in Clinical Practice Research Datalink (CPRD) primary care data at least a year after start of data collection, and no record of type 1 diabetes, were included. Patients were matched by year of birth (stepwise within 5 years), sex and GP practice to up to 1 non-diabetic patient. The cohort was restricted to those eligible for Hospital Episode Statistics (HES) linkage with follow-up during the study period (01/04/97-31/12/06). Follow-up started at the maximum of the registration date with the practice, practice up-to-standard date (a CPRD quality metric), and start of study period. Follow-up ended at the minimum of when the patient left the practice, the date CPRD last collected data from the practice, and end of study period. Cancer was identified in CPRD via Read codes and in HES via ICD10 codes. For each cancer case in CPRD, analysis evaluated whether there was a corresponding record in HES coded with same, different or unspecified site. Analysis was repeated for cancers identified in HES.
Results53,585 diabetic patients were matched to 47,435 non-diabetic patients. 83% of cancer cases in CPRD had a corresponding record in HES (78% with the same type). Misclassification varied by cancer site, ranging from 3% (stomach cancer) to 57% (nonmelanoma skin cancer). 83% of cancer cases in HES had a corresponding record in CPRD, with all misclassification rates <20%.
ConclusionA good level of concordance and low level of misclassification of cancer exist between CPRD primary care data and HES. The value of linking these data for establishing cancer outcomes lies more in the complimentary variables held than in reducing misclassification.

ABSTRACT
ObjectivesPotentially preventable hospitalisations (PPHs) place a substantial burden on the Australian health system, with over 212,000 PPHs reported for diabetes alone in 2005/06. Timely and effective primary care may reduce the risk of acute episodes and subsequent hospitalisation among those with chronic diseases. The Medicare Enhanced Primary Care program, introduced to improve the regularity and quality of healthcare provided by GPs to Australians with chronic disease, has been shown to improve regularity of GP access. The aim of our study is to ascertain whether more regular GP access reduces diabetes PPHs.
ApproachWhole of population longitudinal study using linked hospital, mortality, and general practice data. Regularity of GP access was determined through calculating the variance in the number of days between GP visits within a year. Regular GP contact was taken to indicate planned, proactive primary care, and irregular GP contact taken to indicate unplanned, reactive care. Multilevel modelling techniques were used to determine the relationship between regularity of GP access and diabetic PPHs in the population at risk of diabetes. Analyses were performed for the periods prior to and following the introduction of policies aimed at promoting primary care contact.
ResultsThis paper will report results on the relationship between regular, proactive GP contact and diabetes PPHs in the population with and at risk of diabetes. Socio-demographic, geo-spatial and access factors were found to influence the regularity of GP access. Individual factors, in particular disease status, were found to substantially modify the relationship between regularity and PPH outcome. Findings differed between the periods prior to and following the introduction of government policies aimed at promoting proactive primary care in chronic disease.
ConclusionFindings from this study will provide important evidence concerning strategies to reduce PPHs in relation to diabetes, which will be of interest to policy-makers wishing to reduce unnecessary hospitalisations. This work will extend to examine the impact of regularity on PPHs for a number of other chronic conditions considered priorities in Australia.

ABSTRACT
BackgroundTo build the complete picture of service provision there is a need to broaden the linked data available to include health, social service provision by Local Authorities, and provision of support by third sector organisations. Data Linkage in Social Care is a pilot project to test the feasibility of linking datasets from a local authority, the NHS and third sector organisations. The focus of this work is individual level data from adults who are referred to social services in order to avoid admission to hospital or to facilitate their discharge from hospital. The data linkage will include data from statutory and third sector organisations and services which provide interventions and support in community settings.
ObjectivesThe main aims of this research are to:1. Test the feasibility of linking datasets from Local Authority, the NHS and third sector organisations.2. Build a more complete picture of service provision using adults who have been referred to social services in order to avoid admission to hospital or to facilitate their discharge from hospital.3. Assess the range and quality of data available in each of the relevant organisations providing services to those individuals.
The research outcome is a better understanding of the utility of data linkage across statutory and third party organisations.
ApproachA Bangor University led research team partnered with the Gwynedd Local authority to explore the Governance Issues and practicalities of providing an anonymised dataset to the SAIL databank at Swansea. Two third sector agencies were also approached. With the various required Service Level Agreements in place, data were put through the tried and trusted SAIL process for analysis.
Results Data relating to well over 20,000 referrals generated by 17,000+ social services clients in Gwynedd Local Authority from the period 2008 to 2015 were anonymised into the SAIL databank in Swansea, and linked to records from primary and secondary care. We will present results on the success of this process and on the emerging findings from the linked datasets.

ABSTRACT
ObjectivesTo link the Diagnostic Imaging Dataset (DID) to cancer registration records to allow investigation of imaging performed in patients diagnosed with cancer and its relation to patient pathways and outcomes for lung and ovarian cancer patients diagnosed in England in 2013.
ApproachAll available DID data from April 2012 until July 2015 were joined with registry data for all patients diagnosed with lung cancer in 2013, extracted from Public Health England's tumour-level cancer records. Records were joined on NHS number and date of birth for individuals aged 15-99, with a non-provisional tumour record and with only one lung cancer diagnosis.
One tumour can be linked to many imaging records. Because DID data are not limited to cancer-associated imaging, variables were created to flag imaging records that are likely to be related to the lung cancer diagnosis.
Lists of imaging procedure (SNOMED) codes considered to be related to the cancer diagnosis were created in consultation with clinicians. Imaging records that took place in the 3 months prior to diagnosis and were on the list of relevant procedure codes were flagged as relevant records.
The same method was replicated for ovarian cancer.
Results34,780 patients, each with only one lung tumour diagnosed in 2013, were joined with 502,600 DID records. The aforementioned flagging procedure resulted in 52,429 relevant DID records.
5,911 patients, each with only one ovarian tumour diagnosed in 2013, were joined with 74,425 DID records. The aforementioned flagging procedure resulted in 3,830 relevant DID records.
The resulting linkage has highlighted issues with potential missing imaging data and this is being explored and will be reported upon.
ConclusionThis is the first time linkage of DID and cancer registration data has taken place. The newly linked dataset will enable researchers to explore the imaging dataset further, with the potential to deepen understanding of issues such as imaging usage and intervals in imaging delivery.
Funding sourcesCancer Research UK.

Background The main symptoms of degenerative lumbar spinal canal stenosis are progressive back pain, spinal claudication, and, occasionally, sensory and motor deficits. Impairments particularly occur during walking, standing, and sitting. Thus social and vocational activities are increasingly restricted, causing considerable suffering for patients. Surgical therapies are superior to conservative ones. This article studies the outcome of 2-level fenestration versus hemilaminectomy for bisegmental spinal stenosis decompression.
Methods This retrospective matched-pair cohort study included a total of 144 patients who underwent surgery for bisegmental spinal stenosis at the levels L3-4 and L4-5 between 2008 and 2012. There were 72 matching pairs that corresponded in sex, year of birth, and width of the stenosed segments. The patients' impairments were reported before, immediately after, and 6 and 12 months after surgery using the Oswestry Disability Questionnaire (ODQ-D) and the EuroQol-5D (EQ-5D). The data were evaluated statistically.
Results The comparison of both surgical procedures regarding walking ability (walking a distance with and without a walking aid) revealed a significant difference. Patients who underwent hemilaminectomy had better postoperative results. The individual criteria of the ODQ-D and EQ-5D revealed no significant differences between 2-level fenestration and hemilaminectomy; however, there is always significant postoperative improvement in comparison with preoperative status. Age, sex, body mass index, comorbidities, smoking, and alcohol consumption had no influence on the surgical results. The reoperation rate was between 13% and 15% for both surgical techniques, not being significantly different.
Conclusion Fenestration and hemilaminectomy are equivalent therapies for bisegmental lumbar spinal canal stenosis. Regarding walking, the study revealed better results for hemilaminectomy than for fenestration in this cohort of patients. Pain intensity, personal care, lifting and carrying of objects, sitting, social life, and travel all improved significantly postoperatively as compared with preoperatively. In both groups, health status as the decisive predictor improved considerably after surgery. We could show that both surgical methods result in significant postoperative improvement of all the individual criteria of the ODQ-D and the EQ-5D.

Abstract Background In recent years, shared decision making (SDM) has been promoted as a model to guide interactions between persons with MS and their neurologists to reach mutually satisfying decisions about disease management – generally about deciding treatment courses of prevailing disease modifying therapies. In 2009, Dr. Paolo Zamboni introduced the world to his hypothesis of Chronic Cerebrospinal Venous Insufficiency (CCSVI) as a cause of MS and proposed venous angioplasty ('liberation therapy') as a potential therapy. This study explores the discussions that took place between persons with MS (PwMS) and their neurologists about CCSVI against the backdrop of the recent calls for the use of SDM to guide clinical conversations. Methods In 2012, study researchers conducted focus groups with PwMS (n = 69) in Winnipeg, Canada. Interviews with key informants were also carried out with 15 participants across Canada who were stakeholders in the MS community: advocacy organizations, MS clinicians (i.e. neurologists, nurses), clinical researchers, and government health policy makers. Results PwMS reported a variety of experiences when attempting to discuss CCSVI with their neurologist. Some found that there was little effort to engage in desired discussions or were dissatisfied with critical or cautious stances of their neurologist. This led to communication breakdowns, broken relationships, and decisions to autonomously access alternative opinions or liberation therapy. Other participants were appreciative when clinicians engaged them in discussions and were more receptive to more critical appraisals of the evidence. Key informants reported that they too had heard of neurologists who refused to discuss CCSVI with patients and that neurology as a whole had been particularly vilified for their response to the hypothesis. Clinicians indicated that they had shared information as best they could but recommended against seeking liberation therapy. They noted that being respectful of patient emotions, values, and hope were also key to maintaining good relationships. Conclusions While CCSVI proved a challenging context to carry out patient-physician discussions and brought numerous tensions to the surface, following the approach of SDM can minimize the potential for unfortunate outcomes as much as possible because it is based on principles of respect and more two-way communication.