Communication and cognitive impairments and healthcare decision-making in MND: A narrative review

Rationale: Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person-centred healthcare relies on the sharing of information and a mutual understanding of the person’s needs and preferences. Decision-making in MND becomes more complex as there is no cure and a high prevalence of co-morbid communication and/or cognitive difficulties. Objective: To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in healthcare decision-making in MND. Methods: A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision-making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision-making. Relevant data was extracted verbatim and subjected to content analysis to support the narrative summary. Results: Seventy-six articles were identified and 35 articles screened. Six articles met inclusion criteria each describing examples of decision-making in MND. There was limited data related to communication and/or cognitive impairment and the impact these impairments may have on decision-making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others. Conclusion: This review highlights that the current body of literature exploring decision-making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on healthcare decision-making. Extant literature focuses on interventions (namely ventilation and gastrostomy), the broad process of decision-making, or cognitive assessment of decision-making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision-making process, this issue is not the focus of any study

Assessing collaborative efforts of making care fit for each patient – A systematic review

Introduction: For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit. Methods: We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real-life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. Results: We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions ‘Patient-clinician collaboration: content’ (N = 396, 32%) and ‘Patient-clinician collaboration: manner’ (N = 382, 31%) and the least related to ‘Ongoing and iterative process’ (N = 22, 2%) and in ‘Minimally disruptive of patient lives’ (N = 29, 2%). The items referred to 27 specific actions. Most items referred to ‘Informing’ (N = 308, 25%) and ‘Exploring’ (N = 93, 8%), the fewest items referred to ‘Following up’, ‘Comforting’ and ‘Praising’ (each N = 3, 0.2%). Discussion: Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. Patient Contribution: Patients and caregivers from the ‘Making care fit Collaborative’ were involved in drafting the dimensions relevant to patient–clinician collaboration

Selecting and implementing overview methods: implications from five exemplar overviews

This is the final version of the article. Available from BioMed Central via the DOI in this record.Background Overviews of systematic reviews are an increasingly popular method of evidence synthesis; there is a lack of clear guidance for completing overviews and a number of methodological challenges. At the UK Cochrane Symposium 2016, methodological challenges of five overviews were explored. Using data from these five overviews, practical implications to support methodological decision making of authors writing protocols for future overviews are proposed. Methods Methods, and their justification, from the five exemplar overviews were tabulated and compared with areas of debate identified within current literature. Key methodological challenges and implications for development of overview protocols were generated and synthesised into a list, discussed and refined until there was consensus. Results Methodological features of three Cochrane overviews, one overview of diagnostic test accuracy and one mixed methods overview have been summarised. Methods of selection of reviews and data extraction were similar. Either the AMSTAR or ROBIS tool was used to assess quality of included reviews. The GRADE approach was most commonly used to assess quality of evidence within the reviews. Eight key methodological challenges were identified from the exemplar overviews. There was good agreement between our findings and emerging areas of debate within a recent published synthesis. Implications for development of protocols for future overviews were identified. Conclusions Overviews are a relatively new methodological innovation, and there are currently substantial variations in the methodological approaches used within different overviews. There are considerable methodological challenges for which optimal solutions are not necessarily yet known. Lessons learnt from five exemplar overviews highlight a number of methodological decisions which may be beneficial to consider during the development of an overview protocol.The overview conducted by Pollock [19] was supported by a project grant from the Chief Scientist Office of the Scottish Government. The overview conducted by McClurg [21] was supported by a project grant by the Physiotherapy Research Foundation. The overview by Hunt [22] was supported as part of doctoral programme funding by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC). The overview conducted by Estcourt [20] was supported by an NIHR Cochrane Programme Grant for the Safe and Appropriate Use of Blood Components. The overview conducted by Brunton [23] was commissioned by the Department of Health as part of an ongoing programme of work on health policy research synthesis. Alex Pollock is employed by the Nursing, Midwifery and Allied Health Professions (NMAHP) Research Unit, which is supported by the Chief Scientist Office of the Scottish Government. Pauline Campbell is supported by the Chief Nurses Office of the Scottish Government

Shared Decision Making in Immigrant Patients.

Communication is at the core of shared decision making, and communication difficulties are therefore barriers to using shared decision making in clinical practice. In clinical encounters with immigrant patients from culturally and linguistically diverse backgrounds, a number of communication challenges arise, which can be obstacles to the implementation of shared decision making. Here, we discuss some of these challenges, possible solutions and research required to address identified knowledge gaps

Shared decision-making in the People’s Republic of China: current status and future directions

Rongchong Huang,1 Michael R Gionfriddo,2 Lizhi Zhang,3 Aaron L Leppin,2 Henry H Ting,4 Victor M Montori5 1Department of Cardiology, The First Affiliated Hospital of Dalian Medical University, Dalian, Liaoning, People’s Republic of China; 2Knowledge and Evaluation Research Unit and Mayo Graduate School, 3Division of Anatomic Pathology, Department of Laboratory Medicine and Pathology, 4New York-Presbyterian Hospital and Healthcare System, The University Hospital for Columbia and Cornell, New York, NY, 5Knowledge and Evaluation Research Unit and Division of Endocrinology, Mayo Clinic, Rochester, MN, USA Background: Severe insufficiencies in the supply and inequities in the distribution of health care professionals, facilities, and services create conditions for limited quality of care and lack of trust – even violent conflict – between clinicians and patients in the People’s Republic of China. Alongside structural reform, shared decision-making (SDM) may help meet the needs and advance the goals of each patient. Little is known, however, about the realities and opportunities for SDM in the People’s Republic of China. Methods: To identify reports of SDM in the People’s Republic of China, we used multiple sources, including: several databases, searched in English and Chinese, online journals, and clinical trial registries. In addition, we contacted experts in the field to identify any articles missed through our other search strategies. We included all trials and surveys reporting on SDM in Chinese patients. We summarized these studies by describing them with particular attention to reports of patient decisional preference and of the impact of SDM interventions on outcomes in Chinese patients. Results: We identified five surveys examining patient preference for SDM and nine studies examining constructs related to SDM in Chinese patients, but none involving patients in Mainland China. We could not find any reports of development, testing, or implementation of SDM tools for patients in Mainland China. Conclusion: The research on SDM in the People’s Republic of China is limited, with almost no direct evidence to inform clinical policies or implementation. Although multiple barriers are apparent, the value of implementing, testing, and disseminating effective SDM in the People’s Republic of China in terms of patient experience and outcomes demands urgent realization. Keywords: shared decision-making, the People’s Republic of China, patient-centered car

Assessing the feasibility and quality of shared decision making in China: evaluating a clinical encounter intervention for Chinese patients

Rongchong Huang,1,* Xiantao Song,2,* Jian Wu,1 Wei Huang,2 Aaron L Leppin,3 Michael R Gionfriddo,3,4 Yongxian Liu,1 Kasey R Boehmer,3 Henry H Ting,5 Victor M Montori3,6 1Department of Cardiology, The First Affiliated Hospital of Dalian Medical University, Dalian, 2Department of Cardiology, Beijing An Zhen Hospital, Capital Medical University, Beijing, People’s Republic of China; 3Knowledge and Evaluation Research Unit, 4Mayo Graduate School, Mayo Clinic, Rochester, MN, 5Value Institute, New York-Presbyterian Hospital, The University Hospital of Columbia and Cornell, New York, NY, 6Division of Endocrinology, Mayo Clinic, Rochester, MN, USA *These authors contributed equally to this work Background: The aim of this study was to evaluate the feasibility of using the Statin Choice decision aid to have discussions about starting a statin medication for cardiovascular risk reduction in Chinese patients with stable coronary artery diseases.Methods: A prospective, pilot study of the Statin Choice decision aid in two teaching hospitals in Northern China was conducted. A total of seven clinicians were enrolled and underwent a 12-hour, group-based, in-person training on shared decision making (SDM) and the Statin Choice decision aid. Then, these clinicians used the Statin Choice decision aid in patients during a clinical encounter. A total of 86 patients aged 40-80 years, who had stable angina, were enrolled. All clinical encounters were video recorded. A team of three researchers viewed and scored all the encounter recordings to evaluate the SDM process and fidelity to the intervention using the OPTION scale and Fidelity scale, respectively. All the patients were followed up for 12 months to record adherence to statin and any major adverse cardiac events (MACEs).Results: The average scores on the OPTION normalized score and Fidelity scale were 21 (range, 3–32; out of a possible, 48) and 10 (range, 6–10; out of a possible, 10), respectively. This suggested that Chinese clinicians who were using Statin Choice in their patients were able to exhibit behaviors consistent with SDM at a level that is similar to that reported in Western countries. After SDM, the statin adherence was 94.5% (69/73), and the proportion of MACEs was 2.9% (2/69).Conclusion: Using an encounter decision aid developed in the US, it was feasible to implement SDM in a referral cardiology practice in Mainland China. Further work to ensure that the encounter aid is pertinent to the Chinese population and that SDM is tested in at-risk patients could contribute to the implementation of SDM across Mainland China. Keywords: Statin Choice, decision aid, stable angina, statin adherence, shared decision making, Chin