Evidence based primary care? A multi‐tier,multiple stakeholder perspective from Chile

A new challenge in health policy is the implementation of evidence-based practice. It is useful to look at international experiences which go beyond the conventional USA and UK examples. Health sector restructuring in Chile has as its goals: using evidence-based decision-making to reduce variations of practice, contain costs and increase the effectiveness of clinical practice. A key area of change is within primary health care. But how does the implementation of evidence-based health care proceed in reality? In order to understand this, it was decided to assess the policy environment using stakeholder analysis. METHODS: Fifteen stakeholders from the public health sector were interviewed in depth using a snowball strategy for sampling. Material relating to perceptions, thoughts and aspirations about evidence-based innovations in primary health care was collected. Content analysis of the material produced a matrix of criteria and indicators of operational power. RESULTS: Concepts of evidence and effectiveness are different according to the role of each stakeholder in the health system. Most innovations proposed by government are related to management and stakeholders considered them as not being evidence-based. Informal mechanisms of decision-making predominated over the formal. Political issues are more important than formal evidence. All stakeholders felt they had power to define policy criteria but not to implement them. Implementation difficulties are related to how the system is organized and the culture within each organization. Most stakeholders indicated the need for human resources with appropriate knowledge and personal skills in order to implement these changes. These findings reveal again the importance of human factors within organizations. Policy-making should consider such processual aspects in order to implement changes in practices in Chilean health care system more effectively.     

Stakeholder Engagement in Designing Attributes for a Discrete Choice Experiment With Policy Implications: An Example of 2 Swiss Studies on Healthcare Delivery

ObjectivesThe use of discrete choice experiments (DCEs) has become increasingly popular in health policy development by involving and analyzing the preferences of target groups for different aspects of the policy intervention. In this article, we aim to contribute to the standardization of the process of attribute and attribute level development for DCEs with policy relevance. To do so, we propose and empirically illustrate a framework tool for the development and reporting of attributes and attribute levels, with the systematic engagement of relevant stakeholders.MethodsThe framework tool was kept general to allow its use as a standard reporting approach on the development process of a DCE, involving relevant stakeholders at each stage. The proposed 3-stage process consists of (1) collection, (2) selection, and (3) refinement of the DCE attributes and attribute levels. The application of the framework tool is illustrated by 2 projects, Health2040 and COCONUTS—both concerning the preferences of the Swiss population for the future organization of healthcare.ResultsBy engaging stakeholders, we identified and included attributes and attribute levels that would not have been identified solely through the existing literature. In addition, including multiple stakeholders from different professional backgrounds ensured that the selected attributes and attribute levels were policy relevant, were applicable in practice, and reflected the opinions of multiple actors in healthcare.ConclusionThe proposed framework helps to strengthen the standardization of the reporting on attribute and attribute level development with stakeholder engagement and to guide future research teams designing a DCE with policy implications.     

Effects of the reform of the Dutch healthcare into managed competition: Results of a Delphi study among experts

BackgroundIn 2006 a major healthcare reform was introduced in the Netherlands, implying managed competition. This study explored the level of consensus on the outcomes and desired changes of this new system, and differences between stakeholder groups.MethodsA three-round Delphi-study was conducted among Dutch healthcare insurers, health economists, and professionals in general practice (GP) care and mental health (MH) care. In the first round, 20 experts indicated the most important advantages and disadvantages of the Dutch managed competition, and desired changes. Experts in the second (n = 106) and third round (N = 88) rated the importance of the 88 factors identified in the first round.ResultsOnly healthcare insurers reached consensus on important advantages (i.e. improved efficiency; room for choice). Health economists reached almost no consensus on any factors. GP and MH-care professionals reached most consensus on disadvantages (i.e. focus on price over quality, increased bureaucracy) and desired changes (i.e. reduce bargaining power of healthcare insurers; increase attention for care of complex patients); half of them suggested abolishment of managed competition.ConclusionGP and MH-care professionals were most dissatisfied and suggested several changes or even abolishment of the 2006 reform; healthcare insurers mentioned some benefits. This level of dissatisfaction among health care professionals indicates that there is room for improvement, preferably developed in conjunction with stakeholders.     

Stakeholder engagement for improved school policy: development and implementation

The health and education departments of government share a responsibility for promoting the health of children through policies in the school setting. These policies can be enhanced through the involvement of such stakeholders as school personnel, students, parents or caregivers, health professionals, the non-profit sector and industry. Although there is little evidence-based literature on the roles of stakeholders in school policy development and implementation, stakeholder involvement appears to be critical throughout the policy process. This article discusses stakeholder involvement in the development and implementation of school policies that promote and support healthy eating and physical activity. Canadian examples illustrate stakeholder engagement in this context.     

The CAPACITI Decision-Support Tool for National Immunization Programs

ObjectivesImmunization programs in low-income and middle-income countries (LMICs) are faced with an ever-growing number of vaccines of public health importance recommended by the World Health Organization, while also financing a greater proportion of the program through domestic resources. More than ever, national immunization programs must be equipped to contextualize global guidance and make choices that are best suited to their setting. The CAPACITI decision-support tool has been developed in collaboration with national immunization program decision makers in LMICs to structure and document an evidence-based, context-specific process for prioritizing or selecting among multiple vaccination products, services, or strategies.MethodsThe CAPACITI decision-support tool is based on multi-criteria decision analysis, as a structured way to incorporate multiple sources of evidence and stakeholder perspectives. The tool has been developed iteratively in consultation with 12 countries across Africa, Asia, and the Americas.ResultsThe tool is flexible to existing country processes and can follow any type of multi-criteria decision analysis or a hybrid approach. It is structured into 5 sections: decision question, criteria for decision making, evidence assessment, appraisal, and recommendation. The Excel-based tool guides the user through the steps and document discussions in a transparent manner, with an emphasis on stakeholder engagement and country ownership.ConclusionsPilot countries valued the CAPACITI decision-support tool as a means to consider multiple criteria and stakeholder perspectives and to evaluate trade-offs and the impact of data quality. With use, it is expected that LMICs will tailor steps to their context and streamline the tool for decision making.     

基于利益相关者理论的农村县乡两级医疗服务整合作用机制分析

目的:分析利益相关者的利益诉求对农村县乡两级医疗服务纵向整合的影响机制。方法:通过对黔江、黄陂、扬中三地区的利益相关者访谈资料进行词频分析,确定各地区利益相关者的利益诉求;通过利益诉求调查问卷了解各地区利益相关者对各类诉求的重视程度和利益得失情况;借鉴综合评价和博弈论的理论方法分析各地区利益相关者的诉求得益情况对其行为反应的影响。结果:各地区的整合政策均在不同程度上反映了利益相关者的利益诉求;利益诉求效益评分越高的地区,其利益相关者对整合政策的行为配合意愿越强。结论:农村医疗服务整合的改革政策应综合考虑各利益相关者的利益诉求;利益相关者的利益诉求满足情况越好,其配合整合改革的动力越强,从而可在一定程度上影响当地整合改革的实施效果。     

Achievement of equity and universal access in China's health service: A commentary on the historical reform perspective from the UK National Health Service

Abstract

This paper aims to examine the UK National Health Service (NHS) in the historical context of its background reforms and to investigate future developmental strategies for China's health system. We focus on the central issues facing China's future healthcare development: equity and access. China and the UK have approached healthcare reform from opposite perspectives, the NHS has maintained the core principle of providing universal health coverage throughout the decades. However, due to increasing demand, reforms to improve and sustain efficiency have meant increasing government funding while introducing elements of a market system. Conversely, China has moved from a centrally planned system to a fee-for-service system, but serious problems of inequity and access call for new methods of organisation and financing. With the future of both systems under constant debate, international experience will play a vital role in formulating health system reform strategies.     

Stakeholder perspectives towards implementing the national framework on palliative care in Canada

ContextIn 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together.MethodsWe employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed.FindingsFifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies.ConclusionsImplementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.     

Analysis of Stakeholder Engagement in the Public Comments of ICER Draft Evidence Reports

BackgroundHealth technology assessment is becoming increasingly important to healthcare payers'' decision-making. The Institute for Clinical and Economic Review (ICER) is the most established US-based research group performing value assessments. ICER provides opportunities for stakeholder engagement, including a window of opportunity for public comments on the draft evidence report. Those public comments were reviewed in this study.ObjectivesTo determine which stakeholders are most often commenting on ICER technology appraisal reports and to examine what aspects of the reports are the topics of these comments.MethodWe reviewed 7 ICER reports, which were used to extract stakeholder comments. All the identified comments were evaluated by 2 trained reviewers independently for stakeholder type, comment nature (positive or negative), and focus of comments (eg, methodology, data, real-world experience). Statistical analyses were used to analyze the reports for any associations between the frequency of the comments and the stakeholder type by therapeutic area.ResultsA total of 463 comments were identified within the 55 letter submissions identified across the 7 ICER reviews that were included in the study. The quantity of the comments generally reflected the quantity of therapies that were included in the review. Drug manufacturers (63.1%), patients or patient advocacy groups (18.1%), and providers or provider groups (9.7%) were the stakeholders most often engaged in the public comments. The comments most often addressed the methodology of the value assessment (53.8%). Comments about missing data (14%), general criticism (8.2%), and general support (2.2%) were less common.ConclusionICER is committed to engaging stakeholders in their value assessment process and adapting their strategies to improve such communications. Although ICER aims to influence payer decision-making, drug manufacturers were the most involved stakeholder in the assessment process, and they were most concerned with ICER''s methodology. These results show the impact that ICER may have on decision-making in healthcare, emphasize the incentives that ICER drives for certain stakeholders, and highlight areas for further investigation.     

Our roles are not at ease: The work of engaging a youth advisory council in a mental health services delivery organization

ObjectivesThere is growing policy impetus for including youth voices in health services research and health system reform. This article examines the perspectives of professionals in a mental healthcare organization charged with engaging young people as advisors in service transformation.MethodsAn institutional ethnography of a youth mental health services organization in Ontario, Canada, was conducted. Fieldwork consisted of twelve months of observation of meetings, interviews with youth advisors and adult service providers, with subsequent text analysis of engagement training and policy materials. The present article reports data from six adult professionals and related field observations.ResultsService providers’ efforts to engage youth were observed in three areas: a) supporting youth''s development as advisors, b) retaining and deepening youth participation while waiting for organizational change and c) embedding relationships between youth and adults at various levels within the system of care. This work denotes existing tensions between the values and ideals of youth engagement and the everyday demands of services delivery.ConclusionIn this setting, a fundamental dimension of this work consisted of negotiating tensions between the policy enthusiasm for engagement and its realization in a health services context. In describing these contextual challenges, we outline implications for consideration by other youth mental health services. Engagement efforts that are authentic and sustained require resources and flexibility, and leadership commitment to instil service users’ perspectives throughout multiple levels within the organization.     

Improving health equity through health care systems research

Objective

To describe health equity research priorities for health care delivery systems and delineate a research and action agenda that generates evidence-based solutions to persistent racial and ethnic inequities in health outcomes.

Data Sources and Study Setting

This project was conducted as a component of the Agency for Healthcare Research and Quality's (AHRQ) stakeholder engaged process to develop an Equity Agenda and Action Plan to guide priority setting to advance health equity. Recommendations were developed and refined based on expert input, evidence review, and stakeholder engagement. Participating stakeholders included experts from academia, health care organizations, industry, and government.

Study Design

Expert group consensus, informed by stakeholder engagement and targeted evidence review.

Data Collection/Extraction Methods

Priority themes were derived iteratively through (1) brainstorming and idea reduction, (2) targeted evidence review of candidate themes, (3) determination of preliminary themes; (4) input on preliminary themes from stakeholders attending AHRQ's 2022 Health Equity Summit; and (5) and refinement of themes based on that input. The final set of research and action recommendations was determined by authors' consensus.

Principal Findings

Health care delivery systems have contributed to racial and ethnic disparities in health care. High quality research is needed to inform health care delivery systems approaches to undo systemic barriers and inequities. We identified six priority themes for research; (1) institutional leadership, culture, and workforce; (2) data-driven, culturally tailored care; (3) health equity targeted performance incentives; (4) health equity-informed approaches to health system consolidation and access; (5) whole person care; (6) and whole community investment. We also suggest cross-cutting themes regarding research workforce and research timelines.

Conclusions

As the nation's primary health services research agency, AHRQ can advance equitable delivery of health care by funding research and disseminating evidence to help transform the organization and delivery of health care.     

Acceptance and feasibility of school-based seasonal influenza vaccination in Singapore: A qualitative study

IntroductionInfluenza is a major cause of disease in children. School-based seasonal influenza vaccination can be a cost-effective tool to improve vaccine uptake among children, and can bring substantial health and economic benefits to the broader community. The acceptance and feasibility of school-based influenza vaccination are likely to be highly context-specific, but limited data exist from tropical settings with year-round influenza transmission. We conducted a qualitative study to assess acceptability and feasibility of a school-based seasonal influenza vaccination programme in Singapore.MethodsWe conducted qualitative in-depth interviews with key stakeholders, including healthcare professionals, representatives of relevant ministries, preschool principals and parents to understand their perspectives on a proposed school-based seasonal influenza vaccination programme. Interviews were transcribed verbatim and analysed using thematic analysis.ResultsWe conducted 40 interviews. Although preschool-aged children are currently the recommended age group for vaccination, stakeholders suggested introducing the programme in primary and/or secondary schools, where existing vaccination infrastructure would facilitate delivery. However, more comprehensive evidence on the local influenza burden and transmission patterns among children is required to develop an evidence-based, locally relevant rationale for a school-based vaccination programme and effectively engage policy-makers, school staff, and parents. Extensive, age-appropriate public education and awareness campaigns would increase the acceptability of the programme among stakeholders. Stakeholders indicated that an opt-out programme with free or subsidised vaccination would be the most likely to achieve high vaccine coverage and make access to vaccination more equitable.ConclusionsOverall, participants were supportive of a free or subsidised school-based influenza vaccination programme in primary and/or secondary schools, although children in this age group are not currently a recommended group for vaccination. However, a better informed, evidence-based rationale to estimate the programme’s impact in Singapore is currently lacking. Extensive, age-appropriate public education and awareness campaigns will help ensure full support across key stakeholder groups.     

Understanding Canadian Health Technology Assessment through a systems lens

ObjectiveGovernments around the world face challenges in maintaining sustainable, high-quality healthcare systems. Health Technology Assessment (HTA) is widely used as a method to assist in funding decisions. However, the scope and influence of HTA is still limited. We examined how policymakers can improve the usefulness of HTA.MethodsWe used Systems Thinking as a theoretical framework to examine HTA as a system. We purposely sampled stakeholders involved in Canadian HTA at a national or provincial level. We conducted 22 semi-structured interviews in September-December 2016. Data were analysed using NVivo10 and findings are presented as a concept map with explanatory text.FindingsThe HTA system is influenced by stakeholder interactions. Such interactions are, in turn, affected by stakeholders' worldviews and environmental factors. Stakeholders' worldviews includes individual's or groups' values and affect the exchange of information, and interpretation of events. External factors, such as changes to government structures, also affect the system.ConclusionMost stakeholder groups are supportive of the system. However, participants identified a need for change, though the exact changes being recommended differed. Some interactions were praised (formal, inclusive collaborations to provide government with policy guidance on both broad and technology-specific matters), while other interactions were criticised (two-party alliances formed around purposes other than the common good, and lacklustre patient and industry engagement on the part of provincial government).     

The economics of primary healthcare reform in Australia - towards single fundholding through development of primary care organisations

Objective: A strong primary care sector is widely acknowledged as a fundamental component of a well functioning health system and thus has been the focus of strategic reforms in a number of countries. This paper provides an economic analysis of primary healthcare reform, with the aim of identifying the key structural elements that are necessary to support enhanced models of primary health in the Australian context. Approach: This paper utilises economic theory, and draws upon empirical evidence and international experience to analyse primary healthcare reform to identify the structural elements necessary for an enhanced primary care sector. The aim of which is to improve health system performance. These structural elements are then critically examined in the Australian health system setting. Conclusion: For enhanced models of primary healthcare to promote efficiency, they must incorporate a number of key structural elements; notably: governance and purchasing responsibilities for primary care devolved to a meso‐level organisational structure through capitated single fundholding arrangements; blended payment methods for reimbursing providers; the establishment of a national quality and performance framework; and the development of primary care infrastructure. Implications: As the Federal government attempts to address recommendations of the National Health and Hospital Reform Commission, a window of opportunity now exists to pursue long overdue structural reforms to deal with the challenges facing the Australian health system. The paper advances the important structural features to primary healthcare that need to be embraced as the government attempts to pursue its health reform agenda.     

Mapping key stakeholders’ position towards interdisciplinary transgender healthcare: A stakeholder analysis

Trans individuals experience an incongruence between their sex characteristics and their gender which might cause significant distress called gender dysphoria. Gender dysphoria is commonly treated using transition‐related healthcare services, like sex hormones and surgeries, ideally in interdisciplinary settings. The stakeholder environment of an interdisciplinary transgender healthcare centre (ITHC) is considered key in delivering high‐quality healthcare. Therefore, a stakeholder analysis was performed seeking to improve stakeholder relationships and service quality through an evidence‐based approach. Quantitative data were collected using a questionnaire administered cross‐sectionally, and covering attitude towards the ITHC, influence of and influence on stakeholders, level of knowledge about the ITHC, importance of the ITHC for stakeholders and types of interests. The analysis used primary data, collected July to August 2015. N = 79 key stakeholders were identified and n = 42 (53.2%) participated in the survey. Participants were categorised analytically into four stakeholder groups: trans groups, trans health experts, healthcare system and admin departments of the ITHC. Although participants reported low values (e.g. average values on a 5‐point Likert scale; importance: 2.54; influence on the ITHC: 2.43), the attitude of the four stakeholder groups towards the ITHC were positive overall. The attitudes varied, however, depending on the group, for example trans health experts and trans groups reported the highest values for most items. The results demonstrate the importance of systematically analyzing stakeholder positions in order to make appropriate policy decisions, improving stakeholder relationships and assuring long‐term high‐quality healthcare provision. Subsequently, an action plan was developed, focusing on the two groups with the highest values (trans health experts, trans groups). Selected measures are discussed. If stakeholders are to play their part in providing high‐quality, interdisciplinary trans healthcare, they need regular information on the latest developments and recurring feedback of their interests and requirements for the ITHC.     

Community involvement facilitating the discussion of alcohol use in primary care: A nominal group study

BackgroundHazardous alcohol use significantly affects health and wellbeing in society. General practitioners (GPs) are uniquely positioned to address this problem by integrating early identification and brief intervention (EIBI) in daily practice. Unfortunately, EIBI implementation remains low. Community-oriented strategies (COS), defined as public health activities directed to the general population, are suggested to address this implementation gap. COS aim to increase the understanding, engagement and empowerment within the population to facilitate EIBI delivery. However, no consensus on what COS should contain exists.ObjectivesTo obtain insight in the stakeholders’ perspectives and create consensus with them on COS with the highest potential to facilitate EIBI delivery.MethodsFour nominal group sessions were conducted with 31 stakeholders representing 12 different stakeholder groups from Leuven (Belgium). Stakeholders generated ideas, reflected on them in group and prioritised them anonymously, creating four separate lists. Merging these lists with their relative scores resulted in a master list, which was checked for accuracy through a member check. Qualitative content analysis on the stakeholder’s notes provided an in-depth exploration of their perspectives.ResultsTwenty-one strategies were identified, nine of which were COS. Highlighting the GPs’ proactive role was considered most relevant. Other foci included creating awareness on the effects of alcohol use and normalising discussing alcohol use within the community. A holistic approach, exceeding the sole focus on COS, combining community, healthcare and government was accentuated.ConclusionStakeholders emphasise addressing the proactive role of GPs as most promising COS, though it should be delivered within a holistic multi-component approach.     

A practice-based tool for engaging stakeholders in future research: a synthesis of current practices

ObjectiveA major goal of patient-centered outcomes and comparative effectiveness research is to increase the involvement of stakeholders throughout the research process to provide relevant and immediately actionable information. In this report, we review the current practices for engaging stakeholders in prioritizing research.Study Design and SettingTo evaluate the range of approaches to stakeholder engagement, we reviewed the relevant literature and conducted semistructured interviews with (1) leading research organizations in the United States, Canada, and the United Kingdom; and (2) eight Evidence-based Practice Centers that engage stakeholders in comparative effectiveness research.ResultsWe identified 56 articles related to stakeholder engagement in research prioritization. Studies and research organizations interviewed frequently used mixed methods approaches combining in-person venues with structured ranking or voting processes such as Delphi. EPCs similarly used group web/conference calls combined with Delphi ranking or voting. Research organizations reported difficulties engaging the public and policy makers, and EPCs reported challenges engaging federal stakeholders.ConclusionExplicit and consistent use of terminology about stakeholders was absent. In-person techniques were useful to generate ideas and clarify issues, and quantitative methods were important in the prioritization of research. Recommendations for effective stakeholder engagement and a reporting checklist were developed from the accumulation of findings.     

Product Service Platform to improve care systems for elderly living at home

BackgroundPopulation aging is inducing governments to redesign their healthcare models. One policy measure aimed at reducing healthcare expenditures and improving services is to encourage people to age-in-place. Scientific research has been trying to find ICT-enabled solutions to the growing problem of elderly home care. However, such research is often technology-oriented and neglects the end-user perspective. It does not consider the real needs of older people and all stakeholders involved in their healthcare.MethodA user-centered design approach was adopted with the involvement of older people, experts dealing with the aging population, and the whole stakeholders’ chain. Through surveys, focus groups, and brainstorming sessions, it was possible to determine the main features of the product service platform.ResultsStarting from a large-scale survey of elderly people living in Italy, this paper presents the requirements and the architecture of a product service platform aimed at improving the independence and elderly quality of life. This work proposes an elderly-centered platform that works as an aggregation point of an articulated social health system, provides multiple tailored services, and optimizes the use of local resources.ConclusionsThe involvement of the end-user and all the stakeholders allowed for the consideration of different perspectives and the creation of a value network that aggregates existing services, resources, and information with new opportunities to achieve common benefits. This work provides guidelines on how to develop this type of platform by exploiting the potential of each stakeholder without creating new barriers. Technology, caregivers, and society are combined synergistically to provide tailored services able to satisfy specific users’ needs.     

Developing product label information to support evidence-informed use of vaccines in pregnancy

BackgroundProduct labelling information describing the use of vaccines in pregnancy continues to contain cautionary language even after clinical and epidemiological evidence of safety becomes available. This language raises safety concerns among healthcare providers who may hesitate to recommend vaccines during pregnancy.PurposeTo develop clear evidence-based language about vaccine safety and effectiveness in pregnancy for inclusion in vaccine product labels.MethodsWe conducted a three-stage consensus-methods project with stakeholders, including: healthcare providers, vaccine regulators, industry representatives, and experts in public health, communication, law, ethics, and social sciences. Using qualitative and quantitative methods, we held a nominal group technique (NGT) meeting, followed by a Delphi survey, and then a consensus workshop with a subset of Delphi participants. We developed a methodological tool to analyse data for consensus.Principal resultsStakeholders (N = 14) at the NGT meeting drafted product label statements for evaluation in the Delphi survey. Survey participants (N = 41) provided feedback on statements for five hypothetical vaccines. Workshop participants (N = 27) initiated discussions that demonstrated a lack of awareness that the regulatory purpose of product labels is to provide a scientific summary of product-specific pre-clinical and clinical trial data. Each stage of this project built on earlier stages until we achieved strong consensus on the language, structure, and types of data that stakeholders wanted to include in inactivated influenza vaccine (IIV) and tetanus-diphtheria-acellular pertussis (Tdap) vaccine product labels in Canada.ConclusionsThe revised statements for IIV and Tdap aligned with workshop participants’ goals that the product label be evidence-based, with a consistent structure and language that is easily understood by healthcare providers. Emergent methods uncovered stakeholder concerns about the regulatory purpose, content, and evidence used in product labels. Involving healthcare providers in the development and regular updating of product information could prevent interpretations of that information that contribute to vaccine hesitancy.     

Outcomes of importance to children and young adults with cerebral palsy,their parents and health professionals following lower limb orthopaedic surgery: A qualitative study to inform a Core Outcome Set

IntroductionAlthough several outcomes are commonly measured to assess the effect of surgery for young people with cerebral palsy (CP), these are selected mainly by health professionals and researchers. Including the perspectives of a broader range of stakeholders is an essential step towards determining important outcomes for assessment. This qualitative study involves the development of a core outcome set (COS) for lower limb orthopaedic surgery for ambulant children with CP.ObjectiveThis study aimed to identify outcomes that matter to children and young people with CP, their parents and healthcare professionals following lower limb orthopaedic surgery.MethodsSemi‐structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP and 8 parents. Interview data were analysed by content analysis supported by the International Classification of Functioning, Disability and Health (ICF‐CY) supplemented by thematic analysis.FindingsThirty‐one outcomes were identified in total, which were linked to eleven second‐level ICF‐CY categories. There were differences between stakeholder groups in preferences and expectations from surgical outcomes. Healthcare professionals and children with their parents identified 31 and 25 outcomes, respectively. Health outcomes valued by participants were lower limb alignment and symmetry, flexibility and muscle strength, mental health, fatigue, pain, function in life, mobility, participation, being independent, quality of life and adverse events. Compared to previous published trials, 10 new outcomes were revealed by this study.ConclusionThe researchers identified outcomes that are important to all stakeholders following lower limb orthopaedic surgery for ambulant CP. Including these outcomes in future studies would promote patient‐centred care for children and young adults with CP. Findings will be used to inform an international Delphi survey and develop a COS in this field.Patient and Public ContributionThis study was informed by an advisory group including a young adult with CP and a parent of a child with CP. This group engaged in the design of the study and the information material to support the interview (information sheet and interview topic guide).