Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

Consensus guidelines, Delphi methods, and evidence around anaesthetic technique for endoscopic retrograde cholangiopancreatography.

Consensus guidelines on the anaesthetic management of endoscopic retrograde cholangiopancreatography (ERCP) have recently been published. The rigorous synthesis of expert opinion is invaluable when there are limited data, and these guidelines are a significant step forward. This review both guides practice and identifies important research questions. We challenge those working in this field to collaborate and produce the evidence for whether monitored anaesthesia care (MAC) is associated with a lower incidence of adverse events and better outcomes than general anaesthesia for ERCP.

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder.

CDKL5 Deficiency Disorder (CDD) is a rare, X-linked dominant condition that causes a developmental and epileptic encephalopathy (DEE). The incidence is between ~ 1:40,000 and 1:60,000 live births. Pathogenic variants in CDKL5 lead to seizures from infancy and severe neurodevelopmental delay. During infancy and childhood, individuals with CDD suffer impairments affecting cognitive, motor, visual, sleep, gastrointestinal and other functions. Here we present the recommendations of international healthcare professionals, experienced in CDD management, to address the multisystem and holistic needs of these individuals. Using a Delphi method, an anonymous survey was administered electronically to an international and multidisciplinary panel of expert clinicians and researchers. To provide summary recommendations, consensus was set, a priori, as >70% agreement for responses. In the absence of large, population-based studies to provide definitive evidence for treatment, we propose recommendations for clinical management, influenced by this proposed threshold for consensus. We believe these recommendations will help standardize, guide and improve the medical care received by individuals with CDD.

A Delphi Study on the Healthcare Needs of Patients with Type 1 Diabetes during the Transition from Adolescence to Adulthood: Consensus among Patients, Primary Caregivers, and Healthcare Providers.

Patients with type 1 diabetes mellitus at the age of 16-25 face the challenges of the deterioration of disease control and accelerated exacerbation. Providing interventions that meet patient's healthcare needs can reduce the impact and improve health outcome. The purpose of this study was to identify the healthcare needs of patients with type 1 diabetes during the adolescence to adulthood transition period from the perspectives of patients, parents and healthcare providers. A two-round Delphi study was conducted among 48 participants, and included 17 patients, 16 primary caregivers, and 15 healthcare providers. The central tendency and dispersion were computed to establish a consensus. Seventy-one healthcare needs were identified across five dimensions-technology, external support, internal support, management, and healthcare-and 56 were considered as important healthcare needs and with a moderate to high level of agreement. Meanwhile, patients, primary caregivers, and healthcare providers were found to display significantly different opinions (p < 0.05) for 23 healthcare needs. This study concluded the consensus of the healthcare needs of patients with type 1 diabetes mellitus during the adolescence to adulthood transition period from a systematic investigation. The findings can serve as reference for developing transitional intervention strategies.

Methodology in core outcome set (COS) development: the impact of patient interviews and using a 5-point versus a 9-point Delphi rating scale on core outcome selection in a COS development study.

BACKGROUND: As the development of core outcome sets (COS) increases, guidance for developing and reporting high-quality COS continues to evolve; however, a number of methodological uncertainties still remain. The objectives of this study were: (1) to explore the impact of including patient interviews in developing a COS, (2) to examine the impact of using a 5-point versus a 9-point rating scale during Delphi consensus methods on outcome selection and (3) to inform and contribute to COS development methodology by advancing the evidence base on COS development techniques. METHODS: Semi-structured patient interviews and a nested randomised controlled parallel group trial as part of the Pelvic Girdle Pain Core Outcome Set project (PGP-COS). Patient interviews, as an adjunct to a systematic review of outcomes reported in previous studies, were undertaken to identify preliminary outcomes for including in a Delphi consensus survey. In the Delphi survey, participants were randomised (1:1) to a 5-point or 9-point rating scale for rating the importance of the list of preliminary outcomes. RESULTS: Four of the eight patient interview derived outcomes were included in the preliminary COS, however, none of these outcomes were included in the final PGP-COS. The 5-point rating scale resulted in twice as many outcomes reaching consensus after the 3-round Delphi survey compared to the 9-point scale. Consensus on all five outcomes included in the final PGP-COS was achieved by participants allocated the 5-point rating scale, whereas consensus on four of these was achieved by those using the 9-point scale. CONCLUSIONS: Using patient interviews to identify preliminary outcomes as an adjunct to conducting a systematic review of outcomes measured in the literature did not appear to influence outcome selection in developing the COS in this study. The use of different rating scales in a Delphi survey, however, did appear to impact on outcome selection. The 5-point scale demonstrated greater congruency than the 9-point scale with the outcomes included in the final PGP-COS. Future research to substantiate our findings and to explore the impact of other rating scales on outcome selection during COS development, however, is warranted.

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice.

INTRODUCTION: Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. METHODS: A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O'Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements. RESULTS: Twenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process. CONCLUSION: Understanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient's values and experiences should be used to support and guide clinical decision-making.

Evaluating follow-up and complexity in cancer clinical trials (EFACCT): an eDelphi study of research professionals' perspectives.

OBJECTIVES: To evaluate patient follow-up and complexity in cancer clinical trial delivery, using consensus methods to: (1) identify research professionals' priorities, (2) understand localised challenges, (3) define study complexity and workloads supporting the development of a trial rating and complexity assessment tool (TRACAT). DESIGN: A classic eDelphi completed in three rounds, conducted as the launch study to a multiphase national project (evaluating follow-up and complexity in cancer clinical trials). SETTING: Multicentre online survey involving professionals at National Health Service secondary care hospital sites in Scotland and England varied in scale, geographical location and patient populations. PARTICIPANTS: Principal investigators at 13 hospitals across nine clinical research networks recruited 33 participants using pre-defined eligibility criteria to form a multidisciplinary panel. MAIN OUTCOME MEASURES: Statements achieving a consensus level of 70% on a 7-point Likert-type scale and ranked trial rating indicators (TRIs) developed by research professionals. RESULTS: The panel developed 75 consensus statements illustrating factors contributing to complexity, follow-up intensity and operational performance in trial delivery, and specified 14 ranked TRIs. Seven open questions in the first qualitative round generated 531 individual statements. Iterative survey rounds returned rates of 82%, 82% and 93%. CONCLUSIONS: Clinical trials operate within a dynamic, complex healthcare and innovation system where rapid scientific advances present opportunities and challenges for delivery organisations and professionals. Panellists highlighted cultural and organisational factors limiting the profession's potential to support growing trial complexity and patient follow-up. Enhanced communication, interoperability, funding and capacity have emerged as key priorities. Future operational models should test dialectic Singerian-based approaches respecting open dialogue and shared values. Research capacity building should prioritise innovative, collaborative approaches embedding validated review and evaluation models to understand changing operational needs and challenges. TRACAT provides a mechanism for continual knowledge assimilation to improve decision-making.

Defining Serious Illness Among Adult Surgical Patients.

CONTEXT: Palliative care (PC) for seriously ill surgical patients, including aligning treatments with patients' goals and managing symptoms, is associated with improved patient-oriented outcomes and decreased health care utilization. However, efforts to integrate PC alongside restorative surgical care are limited by the lack of a consensus definition for serious illness in the perioperative context. OBJECTIVES: The objectives of this study were to develop a serious illness definition for surgical patients and identify a denominator for quality measurement efforts. METHODS: We developed a preliminary definition including a set of criteria for 11 conditions and health states. Using the RAND-UCLA Appropriateness Method, a 12-member expert advisory panel rated the criteria for each condition and health state twice, once after an in-person moderated discussion, for validity (primary outcome) and feasibility of measurement. RESULTS: All panelists completed both rounds of rating. All 11 conditions and health states defining serious illness for surgical patients were rated as valid. During the in-person discussion, panelists refined and narrowed criteria for two conditions (vulnerable elder, heart failure). The final definition included the following 11 conditions and health states: vulnerable elder, heart failure, advanced cancer, oxygen-dependent pulmonary disease, cirrhosis, end-stage renal disease, dementia, critical trauma, frailty, nursing home residency, and American Society of Anesthesiology Risk Score IV-V. CONCLUSION: We identified a consensus definition for serious illness in surgery. Opportunities remain in measuring the prevalence, identifying health trajectories, and developing screening criteria to integrate PC with restorative surgical care.

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.

BACKGROUND: Recent recommendations promote the inclusion of people living with dementia beyond the role of 'participant' to involvement in all areas of the research process. This reflects shifts in dementia studies from 'research on' to 'research with' people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. METHODS: This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). RESULTS: A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into 'accessible statements' for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. CONCLUSIONS: Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. TRIAL REGISTRATION: The study is registered on the COMET Initiative .

Application of the RAND-UCLA Appropriateness Methodology to a Large Multidisciplinary Stakeholder Group Evaluating the Validity and Feasibility of Patient-Centered Standards in Geriatric Surgery.

OBJECTIVES: To explore (1) differences in validity and feasibility ratings for geriatric surgical standards across a diverse stakeholder group (surgeons vs. nonsurgeons, health care providers vs. nonproviders, including patient-family, advocacy, and regulatory agencies); (2) whether three multidisciplinary discussion subgroups would reach similar conclusions. DATA SOURCE/STUDY SETTING: Primary data (ratings) were reported from 58 stakeholder organizations. STUDY DESIGN: An adaptation of the RAND-UCLA Appropriateness Methodology (RAM) process was conducted in May 2016. DATA COLLECTION/EXTRACTION METHODS: Stakeholders self-administered ratings on paper, returned via mail (Round 1) and in-person (Round 2). PRINCIPAL FINDINGS: In Round 1, surgeons rated standards more critically (91.2 percent valid; 64.9 percent feasible) than nonsurgeons (100 percent valid; 87.0 percent feasible) but increased ratings in Round 2 (98.7 percent valid; 90.6 percent feasible), aligning with nonsurgeons (99.7 percent valid; 96.1 percent feasible). Three parallel subgroups rated validity at 96.8 percent (group 1), 100 percent (group 2), and 97.4 percent (group 3). Feasibility ratings were 76.9 percent (group 1), 96.1 percent (group 2), and 92.2 percent (group 3). CONCLUSIONS: There are differences in validity and feasibility ratings by health professions, with surgeons rating standards more critically than nonsurgeons. However, three separate discussion subgroups rated a high proportion (96-100 percent) of standards as valid, indicating the RAM can be successfully applied to a large stakeholder group.

A self-administered questionnaire to measure the painful symptoms of endometriosis: Results of a modified DELPHI survey of patients and physicians.

PURPOSE: To develop a questionnaire based on patients' verbal descriptors, to measure the painful symptoms of endometriosis. METHODS: We performed a two-round modified DELPHI procedure mixing endometriosis patients and physicians to select a set of statements to describe the painful symptoms of endometriosis. Each panelist rated each statement based on diagnosis validity and clarity. The clinicians were experts in endometriosis management selected from various geographic regions in France. Patients were women with surgically confirmed endometriosis who volunteered from a patient association and from the recruitment of the participating physicians. The first round questions were derived from words and phrases in narratives of pain by endometriosis patients. RESULTS: Overall, 76 experts were invited, and of these 56 (74%), comprising 33 patients and 23 gynecologists, responded to the first round questionnaire, and 40 (71.4%) to the second round. Among the 48 statements assessed in the first-round questionnaire, 11 were selected after completion of the two round DELPHI procedure. After discussion and rewording of some items, a total of 21 questions were selected during a final face-to-face meeting. The content of the final questionnaire is organized according to four dimensions: (i) spontaneous pelvic pain and dysmenorrhea, (ii) dyspareunia, (iii) painful bowel symptoms, (iv) and other symptoms. We also provide an English (UK) version produced using several steps of translation and back-translation. CONCLUSIONS: The questionnaire has content validity to measure the subjective experiences of patients with painful endometriosis and can provide a solid basis on which to develop an efficient patient-centered outcome to measure the painful symptoms in therapeutic or in diagnostic studies of endometriosis.

Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia.

BACKGROUND: Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. OBJECTIVES: The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme). DESIGN: Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed. SETTING AND PARTICIPANTS: Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. RESULTS: Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. DISCUSSION AND CONCLUSIONS: Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research.

International experts' perspectives on a curriculum for psychologists working in primary health care: implication for Indonesia.

Enhancing primary health care to incorporate mental health services is a key strategy for closing the treatment gap for people with mental disorders. The integration of psychological care into primary health care is a critical step in addressing poor access to mental health specialists. As the psychology profession is increasingly called upon to prepare psychologists for primary health care settings, an international experts' consensus is valuable in guiding the development of a high-quality curriculum for psychologists working in the primary health care context. A Delphi method was used to gain a consensus on the most appropriate roles and training for psychologists. Initial constructs and themes were derived from a detailed literature review and sent to 114 international experts in primary mental health care from five continents. Overall, 52 experts who participated agreed that psychologists should have wide-ranging roles and skills including clinical, health promotion and advocacy skills. This study has identified the specific roles and training needed by psychologists to enable them to work more effectively in primary health care settings. The consensus will inform the development of a curriculum for psychologists working in primary health care in Indonesia, and is part of a broader suite of studies.

Development of the questionnaire of medication adherence in patients with schizophrenia / 中国实用护理杂志

Objective To develop the questionnaire of medication adherence in patients with schizophrenia.Methods Delphi method was used in this study.The questionnaire of medication adherence in patients with schizophrenia was developed based on two rounds of consultation among 14 experts.Results The questionnaire of medication adherence in patients with schizophrenia consisted of 3 dimensions,7 items of each dimension.Conclusions The questionnaire can be used as the tool of evaluation of medication adherence in patients with schizophrenia.Further theoretical and empirical study is needed to verify the questionnaire.

Functional orientation of township hospitals in developed areas in China / 中华医院管理杂志

Objective To explore the functional orientation of township hospitals in developed areas to achieve goals of the ongoing health reform.Methods Two rounds of Delphi consultation was made among 18 experts from around the country to learn the degree of importance of every function.Results The experts' average seniority of service in their fields was 23.28±10.41 years.The positivity coefficients of the two-round consultation were 100％.Kendall' S coefficients of the two-round consultation were 0.226 and 0.265 (p＜0.01).These data are of statistical importance,suggesting consensus among these experts and the consultation meeting the needs of forecast.In these consultation,seven class-1 functions and and 27 class-2 functions were determined.Medical services and public health services account for similar proportion of work of township hospitals.Conclusion The functional orientation was feasible and forward looking,for reference of township hospitals in developed areas.