Greater Patient Involvement Research Articles

The burden of atopic dermatitis in Australia: Medical care, treatment satisfaction, financial impact, long-term control and quality of life.

Atopic dermatitis patients and caregivers experience a high physical, mental and financial burden in Australia. We outline how the current care model impacts disease management and patients' quality of life via a survey of 265 Australian patients and caregivers to capture the experience of managing atopic dermatitis (AD) in Australia. Patients report an unsatisfactory quality of life and a high burden of disease with poor long-term control and low treatment satisfaction. They also reported changing spending and saving patterns to fund medical care. Patient experience improves with more specialised care that incorporates shared decision-making and patient/caregiver training beyond the clinic visit. These results highlight the need for improved general practitioner (GP) education, expedited access to medical specialists, greater patient involvement in treatment choices and more financial assistance to improve the experience of Australian patients and caregivers.

6.G. Workshop: Quality assessment in perioperative care: Challenges and lessons learned from the SAFEST project

Abstract Approximately 313 million surgical procedures are performed worldwide annually, with millions of patients experiencing health benefits while many suffer perioperative complications and harm. World Bank estimations show over 7 million people suffering surgical complications annually, with 4.2 million deaths occurring within 30 days of surgery, placing perioperative mortality as the third most common cause of death. Beyond the ethical issues of patients suffering personal harm while undergoing care, the burden on the health system due to prolonged length of stay and treatment is critical. Perioperative morbidity and mortality have thus become a high-priority public health problem for health systems. Attempts to set targets for improvement adopted well-known conceptual frameworks to categorise areas of evaluation (e.g., Donabedian model) and acknowledged the multifactorial root of perioperative harm and the various patient-condition and system-level factors have been fundamental in perioperative safety. International collaboration is active in seeking to address the challenges of measurement and reporting (COMPAC-StEP), while various tools have been utilised for that purpose (e.g., WHO surgical safety checklist). Several indicators, agreed among experts based on empirical research, have been adopted to assess quality at pre- intra- and postoperative care, but seen as blunt to accurately describe system performance and indicate areas of improvement. This has resulted in poorly defined measures of uncertain value, lacking validity, reliability, and lawfulness, and raising doubts about their true impact on patient safety. On the other hand, patient-centeredness and meaningfulness for patients remain unclear, while traditional clinical measures are increasingly found inadequate to capture all aspects of patient care and recovery. Overall, evidence is still conflicting regarding the most appropriate markers of quality, while long-term and patient-centred outcomes are gaining more scientific attention, despite the various implementation challenges. Greater involvement of patients in the development and selection process of quality indicators is seen as fundamental to better reflect patient values in quality targets in healthcare. A main goal of the workshop is to discuss the challenges and the latest developments in quality assessment in perioperative care and turn the attention towards “evidence-based indicators” for improving quality of care and safety in the perioperative period. The SAFEST project and its approach to developing recommendations and core indicators for patient safety in perioperative care will be presented. The special contribution of patient representatives in the SAFEST stakeholder consensus will be identified. Attributes of ideal quality indicators will be highlighted with reference to evidence-based, important reliable, and actionable indicators and those most prominent in measuring patient-related outcomes of care. Key messages • Translating perioperative safety clinical guidelines recommendations into measurable standards and assess a core of indicators will enhance the implementation of patient safety best practices.

Perceptions of chief clinical information officers on the state of electronic health records systems interoperability in NHS England: a qualitative interview study

BackgroundIn the era of electronic health records (EHR), the ability to share clinical data is a key facilitator of healthcare delivery. Since the introduction of EHRs, this aspect has been extensively studied from the perspective of healthcare providers. Less often explored are the day-to-day challenges surrounding the procurement, deployment, maintenance, and use of interoperable EHR systems, from the perspective of healthcare administrators, such as chief clinical information officers (CCIOs).ObjectiveOur study aims to capture the perceptions of CCIOs on the current state of EHR interoperability in the NHS, its impact on patient safety, the perceived facilitators and barriers to improving EHR interoperability, and what the future of EHR development in the NHS may entail.MethodsSemi-structured interviews were conducted between November 2020 – October 2021. Convenience sampling was employed to recruit NHS England CCIOs. Interviews were digitally recorded and transcribed verbatim. A thematic analysis was performed by two independent researchers to identify emerging themes.ResultsFifteen CCIOs participated in the study. Participants reported that limited EHR interoperability contributed to the inability to easily access and transfer data into a unified source, thus resulting in data fragmentation. The resulting lack of clarity on patients' health status negatively impacts patient safety through suboptimal care coordination, duplication of efforts, and more defensive practice. Facilitators to improving interoperability included the recognition of the need by clinicians, patient expectations, and the inherent centralised nature of the NHS. Barriers included systems usability difficulties, and institutional, data management, and financial-related challenges. Looking ahead, participants acknowledged that realising that vision across the NHS would require a renewed focus on mandating data standards, user-centred design, greater patient involvement, and encouraging inter-organisational collaboration.ConclusionTackling poor interoperability will require solutions both at the technical level and in the wider policy context. This will involve demanding interoperability functionalities from the outset in procurement contracts, fostering greater inter-organisation cooperation on implementation strategies, and encouraging systems vendors to prioritise interoperability in their products. Only by comprehensively addressing these challenges would the full potential promised by the use of fully interoperable EHRs be realised.

Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study.

A limited range of neuropsychiatric symptoms have been reported in systemic autoimmune rheumatic diseases (SARDs), with varied symptom prevalence. This study aimed to investigate a wider range of potential symptoms than previous studies, compare patient self-reports with clinician estimates, and explore barriers to symptom identification. Mixed methods were used. Data from SARDs patients (n = 1853) were compared with controls (n = 463) and clinicians (n = 289). In-depth interviews (n = 113) were analysed thematically. Statistical tests compared means of survey items between patients and controls, 8 different SARD groups, and clinician specialities. Self-reported lifetime prevalences of all 30 neuropsychiatric symptoms investigated (including cognitive, sensorimotor and psychiatric) were significantly higher in SARDs than controls. Validated instruments assessed 55% of SARDs patients as currently having depression and 57% anxiety. Barriers to identifying neuropsychiatric symptoms included: (i) limits to knowledge, guidelines, objective tests and inter-speciality cooperation; (ii) subjectivity, invisibility and believability of symptoms; and (iii) under-eliciting, under-reporting and under-documenting. A lower proportion of clinicians (4%) reported never/rarely asking patients about mental health symptoms than the 74% of patients who reported never/rarely being asked in clinic (P < 0.001). Over 50% of SARDs patients had never/rarely reported their mental health symptoms to clinicians, a proportion underestimated at <10% by clinicians (P < 0.001). Neuropsychiatric symptom self-reported prevalences are significantly higher in SARDs than controls, and are greatly underestimated by most clinicians. Research relying on medical records and current guidelines is unlikely to accurately reflect patients' experiences of neuropsychiatric symptoms. Improved inter-speciality communication and greater patient involvement is needed in SARD care and research.

How do healthcare providers use national audit data for improvement?

BackgroundSubstantial resources are invested by Health Departments worldwide in introducing National Clinical Audits (NCAs). Yet, there is variable evidence on the NCAs’ effectiveness and little is known on factors underlying the successful use of NCAs to improve local practice. This study will focus on a single NCA (the National Audit of Inpatient Falls -NAIF 2017) to explore: (i) participants’ perspectives on the NCA reports, local feedback characteristics and actions undertaken following the feedback underpinning the effective use of the NCA feedback to improve local practice; (ii) reported changes in local practice following the NCA feedback in England and Wales.MethodsFront-line staff perspectives were gathered through interviews. An inductive qualitative approach was used. Eighteen participants were purposefully sampled from 7 of the 85 participating hospitals in England and Wales. Analysis was guided by constant comparative techniques.ResultsRegarding the NAIF annual report, interviewees valued performance benchmarking with other hospitals, the use of visual representations and the inclusion of case studies and recommendations. Participants stated that feedback should target front-line healthcare professionals, be straightforward and focused, and be delivered through an encouraging and honest discussion. Interviewees highlighted the value of using other relevant data sources alongside NAIF feedback and the importance of continuous data monitoring. Participants reported that engagement of front-line staff in the NAIF and following improvement activities was critical. Leadership, ownership, management support and communication at different organisational levels were perceived as enablers, while staffing level and turnover, and poor quality improvement (QI) skills, were perceived as barriers to improvement. Reported changes in practice included increased awareness and attention to patient safety issues and greater involvement of patients and staff in falls prevention activities.ConclusionsThere is scope to improve the use of NCAs by front-line staff. NCAs should not be seen as isolated interventions but should be fully embedded and integrated into the QI strategic and operational plans of NHS trusts. The use of NCAs could be optimised, but knowledge of them is poor and distributed unevenly across different disciplines. More research is needed to provide guidance on key elements to consider throughout the whole improvement process at different organisational levels.

PSYCHOTIC PATIENT AND AFFECTATION OF THE SEXUAL SPHERE. ABOUT A CLINICAL CASE

IntroductionClinical case description.A 44-year-old male, with paranoid schizophrenia, polydrug addict and IVDU since he was 14 years old. Live alone. He is brought by the Local Police for heteroaggressiveness when he was arrested for trespassing and resisting authority. He has presented 14 hospital admissions and therapeutic communities for detoxification since 2000.Objectives1. To analyze the causes of abandonment of treatmentMethods1.Complete medical history2.Blood test with hormone profile3.PRAEQ QuestionnaireAbsence of child psychopathology until the age of 6, at which time his parents separate and he becomes introverted, with solitary activities and distractions. On examination, the patient is restless. Psychotic contact. Delusional speech centered on ill-structured ideas of harm, persecution and grandiose, being difficult to explore due to lack of collaboration on the part of the patient, who only accepts treatment with aripiprazole 5 mg due to sexual dysfunction with the rest of the treatments.ResultsDuring his admission, he has evolved from a very unstructured delusional theme and social isolation, with lax and tangential speech and refusal to take any treatment except aripiprazole, towards a cooperative, trusting attitude, with attenuation of his delusional ideation, with appropriate, organized and releasable. Treatment with IM aripiprazole is agreed upon for discharge.Clinical judgement: Paranoid schizophrenia (F20.0)ConclusionsWith this case, we intend to remember that antipsychotics affect different spheres of the patient’s life that can hinder adherence to treatment, and that we often do not take into account. In this specific case, Abilify Maintena is useful because it does not cause sexual dysfunction, which facilitates treatment adherence and greater patient involvement, which gives us greater opportunities for social integration.Disclosure of InterestNone Declared

S-53-1: SOCIOECONOMIC FACTORS AND PREVENTION OF CARDIOVASCULAR DISEASES IN ASIA

Focus on social determinants of health is important for primordial and primary prevention of cardiovascular diseases (CVD). There are multiple social determinants and are macrolevel factors: social and human development, location related factors, and policies that influence rural and urban planning, environmental pollution, healthcare infrastructure, health financing, quality of health systems, taxation on harmful products (tobacco, alcohol, trans fats), and subsidizing healthy foods. Individual level factors are: multiple social factors, education, income, employment, stress, early life events, addictions including tobacco, and availability, affordability and adherence to medicines and healthy lifestyles. Studies have shown that countries with better development have lower CVD incidence and mortality, also in Asia. Healthy lifestyles (healthy diet, physical activity, tobacco control) and awareness, treatment and control of major risk factors (hypertension, diabetes, dyslipidemias) are more in better developed Asian countries due to better health systems and universal health coverage policies. At individual level higher socioeconomic status and better educational level are associated with lower prevalence of CVD risk factors and better treatment and control of hypertension, dyslipidemias and diabetes. Interventions to address social determinants are limited and include focus on political, economic and social interventions. UN Sustainable Development Goals related to poverty eradication, zero hunger, good health and wellbeing, quality education, gender equality, decent work, economic growth, reduced inequalities, sustainable communities, responsible consumption or production, and climate action address social determinants of health. Creation of health infrastructure in rural and deprived locations, macrolevel financing, manpower deployment and workforce training are important evidence-based interventions. Interventions to improve quality of general education and health literacy and education of medical professionals and non-physician health workers have shown to ameliorate CVD related disparities. Public health interventions include life-course approach for prevention and control of risk factors, better and safe facilities for promotion of physical activity, tobacco, smoking and alcohol control policies, taxation on trans fats, sugars, sugar-sweetened beverages and salt, universal health care focussed on early CVD diagnosis and management, availability of medicines and focus on technological innovations to promote adherence to medicines and healthy lifestyles. At the individual level better CVD risk-factor control can be achieved by focus on individual social determinant and improved professional-patient communication via professional medical education, health worker related focus, patient health literacy, and greater patient involvement.

Transforming ophthalmology in the digital century-new care models with added value for patients.

Ophthalmology faces many challenges in providing effective and meaningful eye care to an ever-increasing group of people. Even health systems that have so far been able to cope with the quantitative patient increase, due to their funding and the availability of highly qualified professionals, and improvements in practice routine efficiency, will be pushed to their limits. Further pressure on care will also be caused by new active substances for the largest group of patients with AMD, the so-called dry form. Treatment availability for this so far untreated group will increase the volume of patients 2-3 times. Without the adaptation of the care structures, this quantitative and qualitative expansion in therapy will inevitably lead to an undersupply.There is increasing scientific evidence that significant efficiency gains in the care of chronic diseases can be achieved through better networking of stakeholders in the healthcare system and greater patient involvement. Digitalization can make an important contribution here. Many technological solutions have been developed in recent years and the time is now ready to exploit this potential. The exceptional setting during the SARS-CoV-2 pandemic has shown many that new technology is available safely, quickly, and effectively. The emergency has catalyzed innovation processes and shown for post-pandemic time after that we are equipped to tackle the challenges in ophthalmic healthcare - ultimately for the benefit of patients and society.

Surgeon-anatomist to robotic technician? The evolving role of the surgeon over three centuries.

In the 18th century, anatomy was the principal science underlying surgical practice. Over the next three centuries, the scientific basis of surgery changed dramatically. Morbid anatomy led to the understanding of organ-based pathologies that allowed surgeons to remove, reconstruct and in some cases replace internal organs. In the 19th century, the new science of microbiology facilitated antisepsis, then asepsis as surgery progressed from a craft to a scientific discipline. Yet many surgeons believed that surgery was not merely a science but also an art, in which the creativity of the doctor was necessary for progress. Surgical advancement depended on creative individuals with innovative flair, prepared to pioneer often risky procedures in the face of mainstream opposition. The 20th century saw a series of changes that made such individualism more difficult. 'Scientific Management' when applied to surgery decreed that procedures be performed according to predetermined schedules, a drive to uniformity producing better outcomes and diminishing individual variation. Yet inventive individuals continued to produce surgical advances. In the 21st century, moves toward standardisation developed further. The escalating safety culture in surgery moderates the introduction of novel, potentially riskier procedures, while more and more regulation increasingly requires surgeons to adhere to guidelines and protocols, further restricting surgical individualism. Moreover, the role of the individual is further diminished, as surgical care is delivered by teams, both in deciding management in major cases and in the operating theatre. The introduction of robotics into surgery has led to the suggestion that the role of the surgeon may become that of a technician. Will these constraints, and greater patient involvement in decisions, allow tomorrow's surgeons the freedom to innovate? We believe that the pioneering spirit, imagination and flair will not be lost. Tomorrow's surgeons must remain doctors, showing the compassion and empathy that robots cannot provide.

Improving the safety and experience of transitions from hospital to home: a cluster randomised controlled feasibility trial of the 'Your Care Needs You' intervention versus usual care

BackgroundThe ‘Your Care Needs You’ (YCNY) intervention aims to increase the safety and experience of transitions for older people through greater patient involvement during the hospital stay.MethodsA cluster randomised controlled feasibility trial was conducted on NHS inpatient wards (clusters) where ≥ 40% of patients were routinely ≥ 75 years. Wards were randomised to YCNY or usual care using an unequal allocation ratio (3:2). We aimed to recruit up to 20 patients per ward. Follow-up included routine data collection and questionnaires at 5-, 30-, and 90-days post-discharge. Eligible patients were ≥ 75 years, discharged home, stayed overnight on participating wards, and could read and understand English.The trial assessed the feasibility of delivering YCNY and the trial methodology through recruitment rates, outcome completion rates, and a qualitative evaluation. The accuracy of using routinely coded data for the primary outcome in the definitive trial was assessed by extracting discharge information for up to ten nonindividual consenting patients per ward.ResultsTen wards were randomised (6 intervention, 4 control). One ward withdrew, and two wards were unable to deliver the intervention. Seven-hundred twenty-one patients were successfully screened, and 161 were recruited (95 intervention, 66 control). The patient post-discharge attrition rate was 17.4% (n = 28). Primary outcome data were gathered for 91.9% of participants with 75.2% and 59.0% providing secondary outcome data at 5 and 30 days post-discharge respectively. Item completion within questionnaires was generally high. Post-discharge follow-up was terminated early due to the COVID-19 pandemic affecting 90-day response rates (16.8%). Data from 88 nonindividual consenting patients identified an error rate of 15% when using routinely coded data for the primary outcome. No unexpected serious adverse events were identified.Most patients viewed YCNY favourably. Staff agreed with it in principle, but ward pressures and organisational contexts hampered implementation. There was a need to sustain engagement, provide clarity on roles and responsibilities, and account for fluctuations in patients’ health, capacity, and preferences.ConclusionsIf implementation challenges can be overcome, YCNY represents a step towards involving older people as partners in their care to improve the safety and experience of their transitions from hospital to home.Trial registrationISRCTN: 51154948.

Enhancing Choices Regarding the Administration of Insulin Among Patients With Diabetes Requiring Insulin Across Countries and Implications for Future Care.

There are a number of ongoing developments to improve the care of patients with diabetes across countries given its growing burden. Recent developments include new oral medicines to reduce cardiovascular events and death. They also include new modes to improve insulin administration to enhance adherence and subsequent patient management thereby reducing hypoglycaemia and improving long-term outcomes. In the case of insulins, this includes long-acting insulin analogues as well as continuous glucose monitoring (CGM) systems and continuous subcutaneous insulin infusion systems, combined with sensor-augmented pump therapy and potentially hybrid closed-loops. The benefits of such systems have been endorsed by endocrine societies and governments in patients with Type 1 diabetes whose HbA1c levels are not currently being optimised. However, there are concerns with the low use of such systems across higher-income countries, exacerbated by their higher costs, despite studies suggesting their cost-effectiveness ratios are within accepted limits. This is inconsistent in higher-income countries when compared with reimbursement and funding decisions for new high-priced medicines for cancer and orphan diseases, with often limited benefits, given the burden of multiple daily insulin injections coupled with the need for constant monitoring. This situation is different among patients and governments in low- and low-middle income countries struggling to fund standard insulins and the routine monitoring of HbA1c levels. The first priority in these countries is to address these priority issues before funding more expensive forms of insulin and associated devices. Greater patient involvement in treatment decisions, transparency in decision making, and evidence-based investment decisions should help to address such concerns in the future.

Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases: A survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries

The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and the needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on telemedicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.

'Steep learning curves' to 'Smooth Sailing': A reappraisal of telegenetics amidst the COVID-19 pandemic.

The COVID‐19 pandemic has pushed medical providers to trial telemedicine on a scale that lacks precedent. In genetic medicine, nearly overnight genetics providers were asked to transition to telemedicine platforms, irrespective of their previous experience with these modalities. This push to telegenetics prompted a reappraisal of the practice, as genetics providers learned firsthand about the feasibility, benefits, and drawbacks of telegenetics and telesupervision, all of which raise questions about the potential incorporation of these platforms beyond the pandemic. Adding to nascent literature on the transition to telegenetics amidst the COVID‐19 pandemic, we aimed to evaluate provider experiences and preferences with respect to telegenetics through qualitative semi‐structured interviews with genetics providers. Nineteen providers from seven institutions participated in a semi‐structured interview focused on the rapid shift to telegenetics, the benefits and drawbacks of the practice, experiences supervising students on virtual platforms, and providers’ preferences. We employed a qualitative methodology so that providers working across diverse subspecialties could expand upon previously reported benefits and drawbacks. Qualitative data revealed the nuanced benefits of telegenetics which included overcoming geographic, spatial, and temporal barriers to care as well as greater involvement of patients’ family members in sessions. In addition, the data indicated drawbacks related to additional tasks such as completing paperwork electronically and facilitating the collection of specimens from patients’ homes. Interviews with providers from different subspecialties revealed how telegenetics may be uniquely useful for particular subspecialties, patient populations, or clinics for whom the aforementioned barriers are more significant. Providers reported that telesupervision made the provision of feedback to students more cumbersome and identified a number of methods for enriching the telesupervision experience. In keeping with previous research, most genetics providers appraised telegenetics as a valuable addition to patient care (68%, N = 13) and hoped to offer it as an option beyond the pandemic (63%, N = 12).

Does greater patient involvement in healthcare decision-making affect malpractice complaints? A large case vignette survey.

Although research findings consistently find poor communication about medical procedures to be a key predictor of patient complaints, compensation claims, and malpractice lawsuits ("complaints"), there is insufficient evidence to determine if greater patient involvement could actually affect the inclination to complain. We conducted an experimental case vignette survey that explores whether greater patient involvement in decision-making is likely to influence the intention to complain given different decisions and consequences. Randomized, national case vignette survey with various levels of patient involvement, decisions, and outcomes in a representative Danish sample of men. We used prostate specific antigen (PSA) screening in men aged 45 to 70 years as the intervention illustrated in 30 different versions of a mock clinical encounter. Versions differed in the amount of patient involvement, the decision made (PSA test or no PSA test), and the clinical outcomes (no cancer detected, detection of treatable cancer, and detection of non-treatable cancer). We measured respondents' inclination to complain about care in response to the scenarios on a 5-point Likert scale (from 1: very unlikely to 5: very likely). The response rate was 30% (6,756 of 22,288). Across all scenarios, the likelihood of complaint increased if the clinical outcome was poor (untreatable cancer). Compared with scenarios that involved shared decision-making (SDM), neutral information, or nudging in favor of screening, the urge to complain increased if the patient was excluded from decision-making or if the doctor had nudged the patient to decline screening (mean Likert differences .12 to .16, p < .001). With neutral involvement or nudging in favor of intervention, the desire to complain depended highly on the decision reached and on the patient's course. This dependence was smaller with SDM. Greater patient involvement in decision-making appears to be associated with less intention to complain about health care, with SDM resulting in the greatest reduction in complaint likelihood.

Cancer patients’ awareness about clinical research in the era of social media and “fake news”: Preliminary results from ELPIS Study.

e24121 Background: Barriers for low recruitment in clinical trials have been classified based on three main sources: physician, patient, system. A primary role is played by a low patient awareness, which often leads to a lack of confidence in science and a substantial inability to estimate the benefits deriving from trial participation, aggravated by the spread of fake news. A prospective observational study was conducted to investigate the views of cancer patients on aspects of clinical research, their expectations, the level of comprehensibility of informed consent and the impact of the fake news phenomenon. Methods: From January 2018, after Ethics Committees approval, the ELPIS study was initiated in 9 Italian Medical Oncology Units. After signing the informed consent, patients were asked to complete a questionnaire, consisting of a set of multiple choice and Likert-score questions. Results: As of January 2021, 115 patients were enrolled, with a balanced sex distribution and a prevalence of subjects older than 55-years (79.8%). Regarding the previous knowledge about clinical research, the average score was 3.9 (range 1-5). The vast majority of respondents (91.3%) had already started experimental therapy and many of them constantly used internet (65.2%) and social networks (34.8%). More than half (53.9%) stated the interview with the physician was sufficient for a full understanding of informed consent. In case of doubt, the majority seeked support in the clinician (39.1%) while very few (1.7%) relied on the web. The average score attributed to doctor-patient relationship was equal to 8.89 (range 1-10). Respondents were quite confident in their ability to independently search for information on their disease, discriminate fake news and identify reliable sites (average score 3.26, 3.27, 3.09 respectively, over a range of 1-5). The scores related to the presumed ability to understand the results of a clinical study and to actively collaborate to produce research were high (average score 4.72 and 4.39 over a range of 1-5). Conclusions: Preliminary data from our research show a good level of patient awareness and a fine ability to understand information, discerning real from fake news. Continuing and implementing the training initiatives of the population in the health sector will certainly contribute to further improvement, hopefully obtaining an even greater involvement of patients in the early phases of research.

Severe chronic low back pain: patient journey from onset of symptoms to strong opioid treatments in Europe.

Aim: We report the first patient roadmap in severe chronic low back pain (cLBP) in Europe, assessing the views of cLBP patients and general practitioners (GPs) who treat cLBP with regard to current cLBP management. Methodology: Patient journey mapping was conducted in four European countries to assess the views of cLBP patients (n=20) and GPs (n=40). Results: Four broad phases of cLBP, subdivided into eight individual steps, were identified as part of the patient journey, showing a disconnect between patients' and physicians' treatment goals, and expectations regarding pain relief levels for some patients. Conclusion: Improved communication, with greater involvement of patients in multimodal management decisions, might benefit the GP-patient relationship and overall outcomes for cLBP patients.

Satisfaction with Alignment After Reduction of a Displaced Distal Radial Fracture.

Alignment adequate to offer nonoperative treatment after reduction of a distal radial fracture is a matter of opinion. This study addressed factors associated with interobserver reliability of satisfaction with alignment after the reduction of a distal radial fracture. A survey sent to members of the Science of Variation Group divided the participants into 4 groups that each rated 24 sets of radiographs of adult patients with a distal radial fracture before and after manipulative reduction and cast or splint immobilization. This resulted in a total of 96 fractures rated by 111 participants. Observers indicated whether they were satisfied with the reduction, meaning that nonoperative treatment was an option, or not, meaning that they recommend surgery. The Fleiss kappa was used to measure reliability. There was fair reliability of satisfaction with reduction of a distal radial fracture (kappa, 0.34 [95% confidence interval (CI), 0.28 to 0.41]). No surgeon factors were associated with variations in reliability. Multivariable linear regression analysis indicated that every degree decrease in dorsal angulation of the distal part of the radius on the lateral radiograph increased satisfaction by a mean of 1% (beta, -0.01 [95% CI, -0.02 to -0.006]; p = 0.001); each millimeter decrease in the anterior-to-posterior distance between the dorsal and volar articular margins on the lateral radiograph increased satisfaction by 3% (beta, -0.03 [95% CI, -0.04 to -0.005]; p = 0.014), and each millimeter decrease in ulnar positive variance increased satisfaction by 6% (beta, -0.06 [95% CI, -0.08 to -0.03]; p < 0.001), accounting for 44% of the observed variation. Surgeons are influenced by radiographic deformity, but do not agree on adequate alignment after reduction of a distal radial fracture. Greater involvement of patients in decisions with regard to acceptable deformity has the potential to decrease treatment variation.

Re-Envisioning the Canadian Nephrology Trials Network: A Can-SOLVE-CKD Stakeholder Meeting of Patient Partners and Researchers.

Purpose:The Canadian Nephrology Trials Network (CNTN) was formed in 2014 to support Canadian researchers in developing, designing, and conducting prospective studies in nephrology. In response to the changing landscape and needs within the Canadian nephrology research community, an interest in further growth and development of the network was identified. In the following report, we describe the process undertaken to re-envision the network through the creation of 3 new committees and how the committees are facilitating change and growth within the CNTN for future sustainability.Sources of information:To understand areas for improvement and capacity building, the organization charged with overseeing the CNTN, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), began by conducting an environmental scan. As well, 2 informal surveys were sent to nephrology professionals (who were members of the CNTN and the Canadian Society of Nephrology) and patient partners (from Can-SOLVE CKD).Methods:In September 2018, 44 CNTN members and other stakeholders from across Canada (including patient partners and representatives from research funding agencies) convened for a 2-day visioning workshop in Mississauga, Ontario. The agenda for this workshop was largely based on the results from the informal surveys. CNTN leadership participated and chose other workshop participants through informal stakeholder mapping and purposeful recruitment. Patient partners were recruited to participate in the workshop through advertisement within the Can-SOLVE-CKD patient council. The survey results and discussion questions were presented to participants at the workshop who, in turn, discussed in large- and small-group session ways in which the CNTN might be expanded.Results:Surveys of patient partners indicated that they would like to see greater involvement of patients in the research process. Surveys of researchers indicated that they wanted more support and resources for coordinating prospective trials. The themes which emerged from the workshop discussions were peer review, engagement, and training. These themes were broadened and formally re-named to Scientific Operations, Communications and Engagement, and Capacity Building. A working committee, each co-led by a nephrologist with research experience and a patient partner, was created to advance each of these identified themes. An executive committee was created to provide overall strategic leadership and governance to the network. The Scientific Operations Committee conducts peer reviews; provides letters of endorsement after peer review; and holds semi-annual in-person meetings where researchers can present their proposals and obtain feedback from multiple stakeholders, including patients. The Communications and Engagement Committee publishes a quarterly newsletter, engages the community on Twitter, and reaches out to community sites and new nephrologists to engage them in research. The Capacity Building Committee conducts webinars to encourage patient partners to develop their own research questions and is developing a hub-and-spoke model to improve research collaboration.Limitations:We did not conduct formal stakeholder mapping. Only attendees of the visioning workshop provided input, and not everyone’s comment or opinion was included in the workshop report. Perspectives were limited to the sample of people who attended the workshop or were surveyed and may not reflect perspectives of all stakeholders in nephrology research in Canada. We did not use formal qualitative methodology to summarize the workshops.Implications:Renewed areas of focus and related committees within the CNTN could lead to an increased capacity for nephrology research, increased engagement and collaboration with researchers, a higher likelihood of funding with rigorous peer review, and more clinical trials and multicenter collaborative prospective research being conducted in Canada.

Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company.

IntroductionReal‐world data are lacking regarding the relationship between prospectively collected patient‐reported outcomes (PROs), clinical outcomes and treatment in people with haemophilia (PWH). The Expanding Communications on Hemophilia A Outcomes (ECHO) registry was designed to address this data gap, but a range of difficulties led to early study closure.AimTo describe the challenges faced and lessons learned from implementing a multinational haemophilia registry.MethodsThe Expanding Communications on Hemophilia A Outcomes was planned as a five‐year observational cohort study to collect data from 2000 patients in nine countries. Based on direct observations, feedback from patients enrolled in ECHO, challenges of the study design and input from study‐sponsor representatives, the ECHO Steering Committee systematically identified the challenges faced and developed recommendations for overcoming or avoiding them in future studies.ResultsThe study closed after two years because few countries were activated and patient recruitment was low. This was related to multiple challenges including delayed implementation, stringent pharmacovigilance requirements, objections of investigators and patients to the burden of multiple PROs, data collection issues, lack of resources at study sites, little engagement of patients and competing clinical trials, which further limited recruitment. At study closure, 269 patients had been enrolled in four of nine participating countries.ConclusionsResearchers planning studies similar to ECHO may want to consider the barriers identified in this global registry of PWH and suggestions to mitigate these limitations, such as greater patient involvement in design and analysis, clearer assessment and understanding of local infrastructure and potential changes to the administration of the study.

Provision of Trainee Biographies to Patients Before Mohs Micrographic Surgery Is Associated With Greater Patient Involvement by Trainees.

Provision of Trainee Biographies to Patients Before Mohs Micrographic Surgery Is Associated With Greater Patient Involvement by Trainees.