Clinical Stakeholders Research Articles

Glomerular Filtration Rate (GFR) Estimation with Cystatin C-Past, Present, and Future.

Cystatin C is a long-established filtration marker which can be used to assess kidney function, but it has been sparingly used for clinical care due to creatinine's role as the primary biomarker for kidney function assessment based on estimated glomerular filtration rate (eGFR). This review summarizes the evolution of cystatin C's role in kidney disease assessment and highlights new guidelines promoting more widespread use. Specifically, the 2021 National Kidney Foundation and American Society of Nephrology Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease report, and the 2024 Kidney Disease Improving Global Outcomes (KDIGO) Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease (CKD), recommend increased use of cystatin C as an alternative and complementary biomarker for kidney function assessment, since it does not differ by race like creatinine, correlates better with adverse outcomes compared to creatinine, and provides a more accurate eGFR when used in combination with creatinine. While robust literature demonstrates improved accuracy with cystatin C-based eGFR (eGFRcys) in certain clinical subpopulations, future research is needed to better understand its performance relative to creatinine-based eGFR (eGFRcr) and measured glomerular filtration rate (mGFR) in additional diverse cohorts, and to achieve assay standardization to match the performance of creatinine assays. Additionally, cystatin C testing availability will need to be broadened from primarily reference laboratories to local laboratories, and partnerships will need to be developed between clinical stakeholders and the laboratory to promote cystatin C's clinical use, to achieve widespread adoption of guideline-recommended eGFR equations.

Assessment and Management of Patients at Risk for Suicide: Synopsis of the 2024 U.S. Department of Veterans Affairs and U.S. Department of Defense Clinical Practice Guidelines.

The U.S. Department of Veterans Affairs (VA) and U.S. Department of Defense (DOD) updated the 2019 joint clinical practice guideline (CPG) for assessing and managing patients who are at risk for suicide. This synopsis provides primary care physicians with a summary of the updated 2024 recommendations regarding evaluation and management of military members and veterans at risk for suicide. In 2023, the VA/DOD Evidence-Based Practice Work Group convened to develop a joint VA/DOD guideline, including clinical stakeholders, which conformed to the National Academy of Medicine's tenets for trustworthy CPGs. The Work Group drafted 12 key questions, reviewed systematically identified literature (1 April 2018 to 15 March 2023), evaluated the evidence, created algorithms, and advanced 24 recommendations in accordance with the GRADE (Grading of Recommendations Assessment, Development and Evaluation) system. Despite insufficient evidence to recommend for or against suicide risk screening programs as a means for reducing suicide attempts or deaths, the VA/DOD Work Group identified validated tools that could be used to identify populations at higher risk for suicide-related behaviors. Cognitive behavioral therapy was also recommended for reducing the risk for suicide attempts and decreasing suicidal ideation among those with a history of suicidal behavior or a history of self-directed violence. Periodic communications after previous suicide attempts were also recommended as a prevention strategy. Pharmacologic treatments, such as clozapine or ketamine infusion, also have a role in the management of suicide risk among those with schizophrenia or major depressive disorder, respectively.

Improving Access to Early Developmental Evaluation in Academic Primary Care Centers.

Developmental disorders (DDs) affect approximately 1 in 6 children in the United States. Early identification and treatment improve developmental outcomes and child and family functioning. Disparities exist in the diagnosis of DD that leads to inequitable access to developmental services during important periods of neuroplasticity. Improve access to the developmental and behavioral pediatrics (DBP) clinic for developmental evaluation when developmental delays occur among children 3-5 years of age by increasing the percentage of children scheduled for and completing an initial visit in 90 days from 20% to 40%. We used the Institute of Health Improvement model, executed mapping failure modes, created a key driver diagram and conducted plan-do-study-act cycles. We plotted data over time in a statistical control chart. The key intervention was an expedited, collaborative referral and scheduling process developed, tested, and implemented by the general pediatric clinic and DBP stakeholders. Additional interventions included reminder notifications and calls to patients who missed appointments. The percentage of patients referred to DBP who scheduled and completed their initial visit in DBP within 90 days increased from 20% to 40%. DBP clinicians suspecting that patients had global developmental delay and/or autism spectrum disorder at the initial DBP visit referred them for more extensive developmental testing with psychology and speech-language providers. Access to developmental evaluation for preschool-aged children at risk for delayed diagnosis and treatment was improved using quality improvement methodology focused on flexible and creative priority scheduling practices from within the medical home.

Information needs in vascular access decision-making: A qualitative study of patient and clinical stakeholder perspectives.

The information and decision support needs required to embed a patient-centred strategy are challenging, as several haemodialysis vascular access strategies are possible with significant differences in short- and long-term outcomes of potential treatment options. We aimed to explore and describe stakeholder perspectives on information needs when making decisions about vascular access (VA) for haemodialysis. We performed thematic analysis of seven (six online, one in person) focus group discussions including transcripts, post-it phrases and text responses with 14 patients and 12 vascular access professionals (four nephrologists, three surgeons and five nurses - Vascular access nurse specialists/Education and dialysis nurses) who participated in at total of six online and one in person focus group. All patients had experience of haemodialysis and 50% had experience with at least one other modality of RRT. Ten patients had experience of more than one VA modality and 4/14 had experience of AVG, 13/14 had experience of AVF and 8/14 had experience of TCVC. We identified four semantic themes and two latent themes. The themes and their subthemes reflected information needs of patients when making vascular access decisions: Knowledge, Risks and Benefits of Relevant options, long-term treatment strategy and Personal Impact of VA. The latent themes, identified across all stakeholders, were of the need for consistent and trustworthy information. All recent vascular access guidelines propose a shared decision-making approach to vascular access. The ability to implement this in practice carries an information need for both patients and clinicians. This study describes a framework model which can be applied during co-design and assessment of vascular access educational resources to facilitate a patient centred perspective.

Translation of PET radiotracers for cancer imaging: recommendations from the National Cancer Imaging Translational Accelerator (NCITA) consensus meeting

BackgroundThe clinical translation of positron emission tomography (PET) radiotracers for cancer management presents complex challenges. We have developed consensus-based recommendations for preclinical and clinical assessment of novel and established radiotracers, applied to image different cancer types, to improve the standardisation of translational methodologies and accelerate clinical implementation.MethodsA consensus process was developed using the RAND/UCLA Appropriateness Method (RAM) to gather insights from a multidisciplinary panel of 38 key stakeholders on the appropriateness of preclinical and clinical methodologies and stakeholder engagement for PET radiotracer translation. Panellists independently completed a consensus survey of 57 questions, rating each on a 9-point Likert scale. Subsequently, panellists attended a consensus meeting to discuss survey outcomes and readjust scores independently if desired. Survey items with median scores ≥ 7 were considered ‘required/appropriate’, ≤ 3 ‘not required/inappropriate’, and 4–6 indicated ‘uncertainty remained’. Consensus was determined as ~ 70% participant agreement on whether the item was ‘required/appropriate’ or ‘not required/not appropriate’.ResultsConsensus was achieved for 38 of 57 (67%) survey questions related to preclinical and clinical methodologies, and stakeholder engagement. For evaluating established radiotracers in new cancer types, in vitro and preclinical studies were considered unnecessary, clinical pharmacokinetic studies were considered appropriate, and clinical dosimetry and biodistribution studies were considered unnecessary, if sufficient previous data existed. There was ‘agreement without consensus’ that clinical repeatability and reproducibility studies are required while ‘uncertainty remained’ regarding the need for comparison studies. For novel radiotracers, in vitro and preclinical studies, such as dosimetry and/or biodistribution studies and tumour histological assessment were considered appropriate, as well as comprehensive clinical validation. Conversely, preclinical reproducibility studies were considered unnecessary and ‘uncertainties remained’ regarding preclinical pharmacokinetic and repeatability evaluation. Other consensus areas included standardisation of clinical study protocols, streamlined regulatory frameworks and patient and public involvement. While a centralised UK clinical imaging research infrastructure and open access federated data repository were considered necessary, there was ‘agreement without consensus’ regarding the requirement for a centralised UK preclinical imaging infrastructure.ConclusionsWe provide consensus-based recommendations, emphasising streamlined methodologies and regulatory frameworks, together with active stakeholder engagement, for improving PET radiotracer standardisation, reproducibility and clinical implementation in oncology.

Stroke Rehabilitation: Synopsis of the 2024 U.S. Department of Veterans Affairs and U.S. Department of Defense Clinical Practice Guidelines.

In July 2024, the U.S. Department of Veterans Affairs (VA) and U.S. Department of Defense (DOD) released a joint update of their 2019 clinical practice guideline (CPG) for the management of stroke rehabilitation. This synopsis is a condensed version of the 2024 CPG, highlighting the key aspects of the guideline development process and describing the major recommendations. The VA/DOD Evidence-Based Practice Work Group convened a joint VA/DOD guideline development work group (WG) that included clinical stakeholders and conformed to the Institute of Medicine's tenets for trustworthy CPGs. The guideline WG conducted a patient focus group, developed key questions, and systematically searched and evaluated the literature (English-language publications from 1 July 2018 to 2 May 2023). The GRADE (Grading of Recommendations Assessment, Development and Evaluation) system was used to evaluate the evidence. The WG developed 47 recommendations along with algorithms for stroke rehabilitation in the inpatient and outpatient settings. Stakeholders outside the WG reviewed the CPG before approval by the VA/DOD Evidence-Based Practice Work Group. This synopsis summarizes where evidence is strongest to support guidelines in crucial areas relevant to primary care physicians: transition to community (case management, psychosocial or behavioral interventions); motor therapy (task-specific practice, mirror therapy, rhythmic auditory stimulation, electrical stimulation, botulinum toxin for spasticity); dysphagia, aphasia, and cognition (chin tuck against resistance, respiratory muscle strength training); and mental health (selective serotonin reuptake inhibitor use, psychotherapy, mindfulness-based therapies for treatment but not prevention of depression).

Implementation of a Cost and Variation Reduction Program for Hemostasis Products at a Large Academic Medical Center: A Multi-Stakeholder Perspective.

Cost-saving initiatives targeting surgical supplies management have become increasingly common to address rising healthcare costs. However, few studies provide details on hospital stakeholder experiences or learnings from implementing such initiatives. Thus, we sought to evaluate hospital stakeholder satisfaction with conversion to a sole supplier for hemostasis products, in addition to economic and clinical impacts, to help develop best practices for implementation. This cross-sectional study assessed satisfaction with converting to a sole supplier for hemostasis products at a large US academic medical center using qualitative interviews and quantitative surveys with clinical and non-clinical stakeholders, on the decision-making process, conversion, and vendor-supported hemostasis optimization program (HOP) post-implementation (February 2022-May 2022). Perioperative hemorrhage events, adjunctive hemostat utilization, and total annual hospital expenditure on hemostatic products were also evaluated pre- and post-conversion (2020-2022) to identify impacts on clinical and economic outcomes. Ten hospital stakeholders completed qualitative interviews (n = 7 surgeons, n = 2 surgical technicians, n = 1 administrator) and 22 completed quantitative surveys (n = 6 surgeons, n = 5 surgical technicians, n = 11 nurses). Survey respondents noted overall satisfaction with conversion, including the level of input they provided in the decision-making process (75% were somewhat to extremely satisfied), availability of hemostatic agents during the conversion process (87%), and the vendor-supported HOP (100%). The outcomes analyses revealed a nearly 25% decrease in supply expenditure without changes to the number of postoperative hemorrhage events following implementation. Converting to a sole vendor for hemostasis products was achieved with high satisfaction among hospital stakeholders and cost savings to the institution without impacting the quality of patient care. This study provides a roadmap of best practices for other institutions interested in implementing similar initiatives and presents an example of a successful transition to a sole vendor for hemostasis products driven by effective supplier, institution, and hospital stakeholder coordination.

The pervasive impact of frailty on ovarian cancer care and the role of prehabilitation: Qualitative perspectives of key stakeholders.

We performed a qualitative study to explore key stakeholders' perspectives about the impact of frailty on ovarian cancer care and evaluate a candidate prehabilitation intervention. We conducted semi-structured interviews with patient-caregiver dyads and multi-disciplinary clinicians. Patients were≥50years of age with a new diagnosis of advanced stage (III/IV) ovarian cancer who received cancer-directed treatment (chemotherapy and/or surgery) during the past year and met criteria as pre-frail or frail using the FRAIL scale. We used a semi-structured interview guide to elicit participants' views on frailty, nutrition, physical therapy, and a candidate prehabilitation intervention. We used inductive and deductive approaches to code and analyze interviews and identify emergent themes and patterns. Ten patients and caregivers (five dyads) and 10 providers were interviewed. We identified four themes: (1) frailty screening is essential to prevent over- and under-treatment, but underused; (2) stakeholders preferred a multidisciplinary approach to providing tailored care for frail patients over a candidate prehabilitation intervention; (3) patient, family caregiver, and clinician stakeholders reported multiple barriers to prehabilitation programs, including concerns about selection bias, and (4) frail patients and family members are vulnerable and require more psychosocial support. We identified significant barriers to prehabilitation interventions for frail patients with ovarian cancer; initiatives to increase frailty screening and provide tailored multi-disciplinary approaches may have a greater impact.

The Australian clinical trial landscape: Perceptions of rural, regional and remote health service capacity and capability

BackgroundAccess to clinical trials is limited for rural, regional and remote Australians, adding to the current health inequity between rural and metropolitan populations. The Australasian Teletrial Model was developed to bring clinical trials “closer to home”. In 2020, the Australian Teletrial Program was funded to expand and support the uptake of the model across six Australian states and territories. The aim of this study was to explore and describe the clinical trial landscape in Australia prior to the implementation of the Australian Teletrial Program with a particular focus on rural, regional and remote health services.MethodsThis qualitative study provides a descriptive exploration of the clinical trial landscape across rural, regional and remote Australia. Data were obtained from semi-structured interviews (n = 33) and one focus group (n = 5) involving clinical trial stakeholders between August 2022 and May 2023. Deductive then inductive thematic analysis used the broad topic areas of the interview schedule as a framework, as follows: education and training, workforce, equipment and services, clinical trial sites, participant recruitment and clinical trial approval process.ResultsThis study identified barriers that are generalizable to the Australian clinical trial landscape and those specific to the rural, regional and remote health service context. The main barriers to conducting clinical trials in rural, regional and remote areas were lack of investment and engagement on the part of health service executives, workforce limitations, inconsistent training, lack of physical infrastructure and competing clinical priorities. Despite these challenges, clinicians reported enthusiasm for conducting clinical trials, and opportunities were reported for these health services to partner with larger metropolitan/regional health services, regional universities and communities to support the growth of clinical trial capability and capacity.ConclusionsThe clinical trial landscape in Australian health services varies in terms of quality and availability of training, workforce capacity, executive support, site capability and approval processes. The Australian Teletrial Program has an immense opportunity to overcome some of the reported challenges by supporting capacity and capability building. Ultimately, however, sustainable reform to bring trials closer to home requires a collaborative approach that considers implementation strategies across all levels of the health service and government, alongside other initiatives.

Integrating Stakeholder Priorities for the Optimization of Care of the Preterm Infant in a Safety-Net NICU.

This study aimed to engage clinical and community stakeholders to create a prioritization matrix of interventions to reduce neonatal brain injury and improve neurodevelopmental outcomes. We collaborated with our community partner to establish a Lived Experience Advisory Group (LEAG). Faculty performed a literature review to identify neonatal neuroprotective interventions; additional priorities from the LEAG were also included. Project leaders scored and presented intervention bundles for impact. Stakeholder priorities for value/feasibility were obtained via questionnaire. Mean values were incorporated into a prioritization matrix. Themes from discussions with LEAG members included the role of the neonatal intensive care unit (NICU) parent, the experience of trauma, shared decision-making, communication and trust with the health care team, and bias in medical care. Five interventions were placed in the highest priority quadrant of the prioritization matrix: thermoregulation, maternal antepartum steroids, delayed cord clamping, optimized oxygen delivery, and optimized glucose regulation. It is feasible to incorporate community and parent values into clinically oriented neuroprotective intervention bundles for preterm infants. This clinical-community collaboration is vital to ensure that our project objectives meet the needs and priorities of the population it is intended to serve. · Including input from parent advisory groups supports interventions that meet the needs of families.. · Collaboration between clinical and community stakeholders can improve neuroprotective and neurodevelopmental strategies.. · Incorporation of clinical interventions into a prioritization matrix improves resource utilization.. · Five perinatal interventions were ranked highly for impact and feasibility in the prioritization matrix..

The Importance of Parent and Clinician Stakeholder Input—Guiding the Guidelines on Pediatric Hypertension

The Importance of Parent and Clinician Stakeholder Input—Guiding the Guidelines on Pediatric Hypertension

Experience, access and utilisation of fertility care for infertile men within the biomedical sector in urban Bangladesh: protocol for a qualitative study

IntroductionOne in six people of reproductive age experience infertility in their lifetime throughout the world, often with devastating consequences. Men are often invisible in infertility research and services, yet masculinity...

Safety in Connected Health Network: Predicting and Detecting Hidden Information in Data Using Multilayer Perception Deep Learning Model

With the tremendous growth in the use of information technology, the connected health networks are becoming more relevant, greatly improving the traditional standard of healthcare procedures from data acquisition, storage, and sharing among the medics for timely clinical diagnosis processes, therapy, and disease management. However, connected health network comes with network and cyber criminality challenges, and frequent security breach attacks on digital platforms and databases. Unfortunately, Sensitive clinical information is greatly at risk with adversaries, most clinical stakeholders find it difficult to overlook free access to the clinical records. Previously, feature aggregation networks, convolutional neural networks, residual convolutional neural networks, and machine learning models were used in different methodological approaches towards ensuring the detection of hidden information in images, unfortunately, none was able to produce optimal results. This study proposes a three-phased framework to determine the suitability of embedder networks’ feature extraction for image steganalysis, predicting and detecting hidden information in images. A Multilayer Perceptron (MLP) deep learning model was trained for pattern recognition of steganography instances in acquired digital image signals. The digital image signals used for the predictive steganalysis are publicly available images contained in two circumstances highlighted regarding clean image signals (situation of cover images, but without steganography) and the embedded situation of image signals (where images (stego) with hidden data or information). Interestingly, the results of the parameter show that the Max-iter parameter of the MLP classifier hugely determines the performance of the algorithm towards detecting steganography in digital image signals. The parameter stipulates the number of times the training set will pass through the MLP network for the training process. Significantly, in our experiment, Max-iter returned the best result at 1000 netting an accuracy of 93%, precision of 57%, and recall of 100% weighted averages. Our study does not only implement a model that detects hidden information in images, but it also discovered and tuned the multilayer perceptron to determine where it will perform best.

A survey of Canadian neurologists’ perspectives and preferences for laboratory reporting of CSF oligoclonal banding

IntroductionCerebrospinal fluid (CSF) oligoclonal banding (OCB) analysis aids in the diagnosis of multiple sclerosis (MS). Despite its clinical importance, there is profound variation in processes, reporting, and interpretation of CSF OCB and associated tests/indices across Canadian laboratories. This is likely due to the lack of clear, evidence-based recommendations on CSF OCB analysis processes and reporting. Here, we assessed the CSF OCB reporting needs and preferences of Canadian neurologists as a first step in clinical stakeholder engagement to aid in the development of CSF OCB reporting recommendations. MethodsA 16-question survey was sent to neurologists across Canada in January 2022, and it closed in March 2022. The survey included questions regarding location and length of clinical practice; preferred maximum time limit for paired CSF and serum samples; reporting preferences for CSF-specific OCB, banding patterns, and associated tests/indices; as well as the clinical utility of CSF OCB and associated tests/indices. ResultsTwenty-two neurologists from nine provinces participated, with a median practice length of 13 years. Most (64 %) preferred a 24-hour limit for paired serum and CSF sample collection. The majority (73 %) favored a cutoff of ≥ 2 CSF-specific bands for positivity, aligning with the 2017 McDonald criteria. Opinions varied on reporting the number of bands and listing specific conditions in the interpretive comments. Some highlighted the need for further research on band count interpretation and its clinical implications. All respondents found CSF OCB results useful, with 64 % valuing it more than other CSF tests for MS evaluation. ConclusionsOur survey reveals diverse preferences among Canadian neurologists for CSF OCB reporting. Stakeholder engagement and further research are crucial for standardized, improved MS diagnostic practices.

Understanding the risk factors for student attrition across pre-registration nursing and midwifery programmes in a United Kingdom university: A sequential explanatory mixed methods study

BackgroundThe World Health Organization estimates a global shortage of 4.5 million nurses and 0.31 million midwives by 2030, which presents a significant problem for workforce planning. Despite aspirational United Kingdom (UK) government policy targets and ongoing efforts, the number of nursing and midwifery vacancies continues to increase. One contributing factor is student nurse and midwife attrition. AimTo identify risk factors that contribute to nursing and midwifery students interrupting or withdrawing from pre-registration programmes. DesignSequential explanatory mixed-methods design. SettingA University School of Nursing and Midwifery in the Southwest of England. Participants534 pre-registration nursing and midwifery student survey respondents and 8 focus group participants. MethodsStudents' perspectives of attrition risk factors were evaluated using a Likert scale with free text questions used to capture additional factors affecting interruption or withdrawal. Students were also invited to take part in focus group discussions. Survey data were coded and analysed utilising SPSS (Version 25) software. Survey free text narrative and focus group data were analysed using reflexive thematic analysis. ResultsSurvey results revealed 55 students had interrupted and returned and 281 students had considered leaving or interrupting their programme. Survey descriptive statistics data were grouped into top attrition risk factors. Free text narratives and focus group data identified four themes: multiple and overlapping challenges; the threats and opportunities of clinical placements; the availability of the right support at the right time; and, investing for a better future for myself and others. ConclusionNursing and Midwifery students reported challenges across their pre-registration programmes resulting in risk factors that might lead to students interrupting or withdrawing. Optimal cooperation between higher education institutions (HEI) and clinical stakeholders is of paramount importance to address these challenges as is government and Nursing and Midwifery Council (NMC) acknowledgement and consideration of the identified risks linked to attrition; specifically relating to national funding arrangements and the clinical practice hours required for registration within the UK. This may also resonate with professional programmes internationally, faced with similar staffing shortages.

Mission and Future Plans for the ADPKD Centers of Excellence Program.

The Autosomal Dominant Polycystic Kidney Disease (ADPKD) Centers of Excellence Program, launched by the Polycystic Kidney Disease Foundation in 2022, aims to bridge the gap in specialized care for individuals with ADPKD. This program seeks to enhance the availability of specialized clinicians and simplify the process for patients seeking expert care. It is founded on three pillars: improving care for all individuals with ADPKD, educating and empowering the community, and advancing PKD research. The program draws inspiration from successful models in other diseases, such as cystic fibrosis and muscular dystrophy, which have demonstrated the effectiveness of standardized care centers in improving patient outcomes. Patient and clinician stakeholder interviews have identified key areas where a national program could make a significant impact, including the need for a core care team with defined referral processes, mentorship and shared care models, patient navigation services, and education around expert consensus and care guidelines. The program introduces two designations: "Center of Excellence" and "Partner Clinic" to accommodate diverse care settings and enhance patient access to specialists. The Partner Clinic designation ensures that patients in smaller community practices have access to specialized care through mentorship and guidance from experts at Centers of Excellence. The program also emphasizes the importance of specialized services, especially in underserved communities experiencing health disparities, to manage the complexities of ADPKD care. Patient focus groups have highlighted the need for care navigation services, centralized sources of knowledge, and access to local care. The program aims to address these needs by providing a structured framework for care coordination, enhancing patient self-advocacy, and improving overall outcomes for individuals with ADPKD.

Developing an implementation intervention, and identifying strategies for integrating health innovations in routine practice: A case study of the implementation of an insulin patient decision aid.

Implementation, which is defined as the process of getting evidence-based innovation to be utilised is critical in ensuring innovation is being integrated into real-world practice. The way an implementation intervention (i.e., a bundle of strategies to facilitate implementation) is developed has an impact on the types of strategies chosen, and whether they are relevant to the implementation setting to exert their effects. However, literature pertaining to development of intervention or detailed descriptions of implementation processes are scarce. This study aims to report the development of an implementation intervention to integrate the use of an evidence-based innovation in routine practice, using a Malaysian insulin patient decision aid (PDA) as an exemplar. The development of the insulin PDA implementation intervention was divided into two phases, incorporating step 3 and 4 of the Action Cycle in the Knowledge to Action framework. In Phase 1, barriers to the insulin PDA implementation was explored through qualitative interviews using an interview guide developed based on the Theoretical Domains Framework. In Phase 2, prioritisation of the barriers was conducted using the multivoting technique. Next, potential strategies that can address the barriers were identified based on understanding the clinic context, and evidence from literature. Then, the selected strategies were operationalised by providing full descriptions in terms of its actor, action, action target, temporality, dose, implementation outcome affected, before they were embedded into the patient care pathway in the clinic. The implementation intervention was finalised through a clinic stakeholders meeting. In Phase 1, a total of 15 focus group discussions and 37 in-depth individual interviews were conducted with: healthcare policymakers (n = 11), doctors (n = 22), diabetes educators (n = 8), staff nurses (n = 6), pharmacists (n = 6), and patients (n = 31). A total of 26 barriers and 11 facilitators emerged and they were categorised into HCP, patient, organisational, and innovation factors. The multivoting exercise resulted in the prioritisation of 13 barriers, and subsequently, a total of 11 strategies were identified to address those barriers. The strategies were mandate change, training workshop, involve patients' family members or caretakers, framing/reframing, inform healthcare providers on the advantages of the insulin PDA use, define roles and responsibilities, place the insulin PDA in the consultation room, provide feedback, systematic documentation, to engage patients in treatment discussions, and juxtapose PDA in preferred language with patient's PDA in their preferred language to help with translation. This study highlights main barriers to PDA implementation, and strategies that can be adopted for implementation. The steps for intervention development in this study can be compared with other intervention development methods to advance the field of implementation of evidence-based innovations.

QOL-17. REFLECTIONS ON A PSYCHOEDUCATION INTERVENTION FOR PATIENTS WITH NEWLY DIAGNOSED BRAIN TUMORS (NEUROPATHWAYS): A QUALITATIVE STUDY

Abstract BACKGROUND Patients with newly diagnosed primary malignant brain tumors (PMBT) face unique challenges processing and absorbing information regarding their diagnosis, often while contending with cognitive and communication deficits. Limited research exists regarding optimal information provision and support for this highly distressed population. We used input from clinician, patient, and caregiver stakeholders to design a population-specific, psychoeducation intervention (“NeuroPathways”) to address these needs. METHODS We conducted a single-arm study (N=12) to pilot and refine NeuroPathways in English-speaking patients within six-weeks of a PMBT diagnosis. Neuropathways comprises 1) a comprehensive (105 pages) handbook covering information about PMBT diagnosis, treatment, coping, self-care, and vetted resources, and 2) four brief, individual telehealth sessions with a trained interventionist (e.g., psychologist, physician) over 4-8 weeks to assist and empower patients to obtain information, support, and coping guidance at their preferred depth and pace, using the handbook as a resource. Ten participants completed all four sessions and participated in semi-structured exit interviews. We used rapid qualitative analysis to explore participants’ perceptions of intervention delivery, content, and benefit. RESULTS Participants (83% male, median age=52 years) uniformly described NeuroPathways as accessible, citing the telehealth format as particularly important for facilitating participation given logistical challenges related to cancer treatment. Perceived benefits of participation included: a) access to well-organized information targeting both current and future disease- and treatment-related concerns; b) increased skill in problem solving and communication with loved ones and/or medical providers; c) personalized emotional support from interventionists. While most felt the timing was appropriate, several who enrolled later in the eligibility window stated a desire for earlier intervention. CONCLUSION Participant feedback highlights the accessibility and potential benefits of this psychoeducation intervention for patients with newly diagnosed PMBT. These data will inform refinement of NeuroPathways in preparation for a pilot randomized controlled trial to formally assess feasibility and acceptability.

Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto

BackgroundIndividual perceptions, socio-cultural beliefs and health system factors are key determinants of people’s health seeking behavior and are widely cited as the causes of delayed breast cancer diagnosis among women from structurally vulnerable settings. Asking: “how do women with a non-lived experience of cancer understand the disease and, what informs their health seeking behaviors?”, we qualitatively explored, individual, sociocultural and health system elements from a conceptual model derived from the Socioecological, Health Belief and Cancer Stigma Frameworks, to understand perspectives of breast cancer in a South African urban community setting.MethodsUsing a deductive approach and allowing new themes to emerge inductively, we investigated phenomenologically, breast cancer perceptions among 34 women from Soweto, Johannesburg (aged 35–74 years) in 6 Focus Group Discussions. We then conducted 20 follow-up semi-structured in-depth interviews to explore novel themes and suggestions for increasing breast cancer screening.ResultsFindings revealed some awareness of breast and other cancers, but confusion and gaps in understanding of the disease, resulting in socio-culturally influenced misperceptions of risks, causes, and outcomes following treatment of breast cancer. This fueled perceptions of profound fear and stigma against people with breast and other cancers. These findings together with participant perceptions of primary healthcare providers being unwelcoming, under-resourced, and insufficiently trained to deal with breast cancer, resulted in women reporting being reluctant to participating in screening/early detection care seeking behavior. Women only accessed primary care when experiencing extreme pain or ill-health. Participants suggested as solutions for future interventions, the need for sustained community engagement, harnessing existing clinic and community stakeholders and resources to provide clear and understandable breast cancer information and encouragement for screening uptake.ConclusionsHealth literacy gaps surrounding breast cancer fuels socio-culturally influenced misperceptions, fear, stigma, and fatalism among women from Soweto. Women perceive primary care providers of having insufficient knowledge, skills, and resources to provide effective breast cancer screening services. Participants suggested the need for greater community engagement involving primary clinics and existing community stakeholders working collaboratively. Clear, understandable, and consistent information about breast cancer must be regularly disseminated and communities must be regularly encouraged to utilize breast cancer screening services.

Natural Products with Potential for the Treatment of Pain: Global Evidence from the NAPRALERT Database.

Natural products (NPs) continue to inform the discovery and development of a diversity of drugs, both marketed and investigational. Pain, one of the most common of human experiences and profound challenges in medicine and biology, has emerged at the core of an urgent societal problem, in the United States and globally. The present study employs a retrospective analysis of an extensive set of published literature curated in the NAPRALERT database to identify NPs with experimental evidence of bioactivity supporting the selection and prioritization of NP leads with promise in pain management. The NAPRALERT pain data set currently documents >38,000 pain-relevant experiments reported in >1,750 distinct journals. The evidence presented here was annotated from >10,000 distinct scientific publications identifying NP extracts and isolates with experimental biological data indicating positive mitigation of pain, inflammation, and/or modulation of nociceptive signaling targets. Correlation of ethnomedical uses with experimental data represents a value-added approach to the selection and prioritization of leads. Dissemination of this unique NP/pain data set, with experimental data and information applicable to basic, translational, and clinical science stakeholders alike, furnishes practical evidence in support of a rational selection of NPs for directed pain research. A large portion of the NAPRALERT pain-relevant data set, along with a set of query tools designed to assist user-directed selection and prioritization of leads, are presented as Supporting Information in order to mitigate the limitations inherent in presenting such a large data set in (print) format. To support user efforts, this report involves explication of NAPRALERT data organization and the articulation of rational approaches to user-guided selection of evidence-based NP leads.