Integrating Patient Perspectives Research Articles

Lived experiences of persons on tuberculosis treatment in Nairobi County, Kenya: a mixed methods study

BackgroundTuberculosis program effectiveness is majorly measured by disease severity and treatment response without integrating patient perspectives. Yet, it’s a critical dimension in clinical decision-making that enhances health worker-patient interactions and increases individuals’ sustained engagement with treatment, thereby benefiting the people affected and the wider public by mitigating the infection risk. This study assessed the lived experiences of persons affected by tuberculosis who were on treatment in Nairobi County, Kenya.MethodsA cross-sectional study was conducted in May 2023 among 392 persons with drug-susceptible pulmonary tuberculosis in five facilities in Nairobi County. Participants were selected through simple random sampling and interviewed by semi-structured questionnaires and focused group discussions. Data on prevention and control strategies, facility preference, medication burden, interaction with healthcare workers, and the socio-economic effects of the disease were collected. Quantitative data was analyzed descriptively using frequencies, percentages, means, and standard deviations while qualitative data was transcribed, coded, and thematically analyzed.ResultsThe sample consisted of 245 males and 147 females aged between 3 and 74 years. Despite the high rating of their interactions with the healthcare workers, the findings show insufficient knowledge of the prevention and control strategies of TB. Additionally, food insecurity resulting from an inability to afford recommended meals, medication burden such as high pill burden especially where there are coexisting medical conditions, undesirable taste and size of the TB tablets, adverse drug events, economic burden due to loss of income, and stigma from the family and community were reported to affect treatment outcomes.ConclusionTreatment outcomes are influenced by multi-level factors such as low knowledge of TB prevention and control strategies, stigma, food insecurity, medication burdens like pill number, size, taste, and adverse drug reactions, facility preference, and economic hardships including loss of income. Understanding the individual needs of persons with TB will help develop interventions that are specific to them for better treatment outcomes.

Incorporating Patient and Family Perspectives into ICU Environmental Design: A Systematic Review and Narrative Synthesis of Existing Literature.

This review aims to assess the incorporation of patient and family input into intensive care unit (ICU) design processes. It aims to highlight the importance of prioritising patient and family perspectives in ICU design to improve patient experiences and clinical outcomes. Traditionally, ICU design has focused on clinical efficiency at the expense of patient-centered needs, leading to heavily sedated patients and neglected holistic care delivery. While architects historically dominated design decisions, there's no recognition of the necessity to integrate patient and family perspectives. However, such efforts remain rare despite professional guidelines advocating for multi-professional team involvement. This review summarises the published literature on built ICUs that have incorporated patient and family input into the design process. It evaluates methodologies used and measures patient-centric outcomes to identify successful examples and areas for improvement in future initiatives. The limited published literature identifies only three projects successfully integrating patient and family input into ICU design. Additionally, one project was identified in a search of the gray literature. However, these projects often lack rigorous evaluation of patient-centric outcomes, with initiatives involving patients and families remaining uncommon. The review underscores the need for more comprehensive evaluation and greater emphasis on patient and family involvement in ICU design. This review emphasizes the significance of integrating patient perspectives into ICU design to enhance outcomes and improve experiences. While progress has been made in recognizing their importance, more efforts are needed to prioritize patient and family involvement for creating conducive environments for healing and recovery.

Flipping healthcare by including the patient perspective in integrated care pathway design: A scoping review

BackgroundDespite the recognized benefits of integrating patient perspectives into healthcare design and clinical decision support, theoretical approaches and standardized methods are lacking. Various strategies, such as developing pathways, have evolved to address these challenges. Previous research emphasized the need for a framework for care pathways that includes theoretical principles, extensive user involvement, and data from electronic health records to bridge the gap between different fields and disciplines. Standardizing the representation of the patient perspective could facilitate its sharing across healthcare organizations and domains and its integration into journal systems, shifting the balance of power from the provider to the patient. ObjectivesThis study aims to 1) Identify research approaches taken to develop patient-centred, integrated, care pathways supported by electronic health records 2) Propose a socio-technical framework for designing patient-centred care pathways across multiple healthcare levels that integrates the voice of the patient with the knowledge of the care provider and technological perspectives. MethodsThis study conducted a scoping review following the Joanna Briggs Institute guidelines and PRISMA-ScR protocol. The databases PubMed, Scopus, Web of Science, ProQuest, IEEE, and Google Scholar were searched using a key term search strategy including variations of patient-centred, integrated care, pathway, framework and model to identify relevant studies. Eligible articles included peer-reviewed literature documenting methodologies for mapping patient-centred, integrated care pathways in healthcare service design. ResultsThis review summarizes the application of care pathway modelling practices across various areas of healthcare innovation. The search resulted in 410 studies, with 16 articles included after the full review and grey literature search. ConclusionsOur research illustrated incorporating patient perspectives into modelling care pathways and healthcare service design. Regardless of the medical domain, our methodology proposes an approach for modelling patient-centred, integrated care pathways across the care continuum, including using electronic health records to support the pathways.

Rehab-AMD: co-design of an application for visual rehabilitation and monitoring of Age-related Macular Degeneration

BackgroundThe increasing demand for remote medical care, driven by digital healthcare advancements and the COVID-19 pandemic, necessitates effective solutions tailored to patients and healthcare practitioners. Co-design, involving collaboration between software developers, patients, and healthcare practitioners, prioritizes end-user needs. Research indicates that integrating patient perspectives enhances user experience and usability. However, its application in healthcare has been limited to small projects. This work focuses on co-designing a technological solution to enhance the monitoring and visual rehabilitation of individuals with Age-Related Macular Degeneration (AMD), a condition that significantly impacts the quality of life in people over 60. Current vision rehabilitation systems lack personalization, motivation, and effective progress monitoring. Involving patients and healthcare practitioners in the design process aims to ensure the final product meets their needs.MethodsThe project employs iterative and collaborative principles, involving a vision rehabilitation expert and two AMD patients as active users in the application’s development and validation. The process begins by establishing requirements for user accounts and rehabilitation exercises. It continues with an initial approach extended through user validation. Co-design is facilitated by specific workshops marking each project iteration, totaling four workshops, along with continuous communication sessions between experts and developers to validate design decisions. Initial requirements gathering and constant feedback from end-users, the visual rehabilitator, and patients are crucial for refining the product effectively.ResultsThe workshops produced a prototype featuring a test to monitor changes and progression and 15 visual rehabilitation exercises. Numerous patient and vision rehabilitation-driven software modifications led to a final design that is responsive and adaptive to end-user needs.ConclusionsThe Rehab-AMD pilot project aims to develop a collaborative and adaptive software solution for AMD rehabilitation by actively involving stakeholders and applying iterative design principles. Co-design in the Rehab-AMD solution proves to be a methodology that identifies usability issues and needs from the initial design stages. This approach ensures that software developers create a final product that is genuinely useful and manageable for people with AMD and the targeted vision rehabilitators.

Use and perceptions of Cannabidiol among individuals in treatment for opioid use disorder

BackgroundCannabidiol (CBD) is a widely available cannabis product with many claims as to potential health benefits including alleviating symptoms related to opioid use disorder (OUD). However, little is known as to how individuals with OUD perceive CBD, to what extent they may already be using CBD, and for what purposes.MethodsA survey was conducted among individuals receiving treatment for OUD at the Addiction Institute of Mount Sinai in New York City from July 2021 to August 2023. The survey consisted of demographic questions, questions about opioid use, CBD use, and perceptions regarding CBD. Statistical analysis using ordinal logistic regression was employed to compare perceptions between CBD users and non-users while adjusting for age and race.ResultsAmong 587 respondents, 550 completed the survey. Among all survey completers, 129 (23%) reported a history of using CBD for a variety of reasons including: anxiety (81, 62.8%), pain (65, 50.4%), sleep (63, 48.8%), depression (62, 48.1%), recreational purposes (32, 24.8%), or for other reasons (8, 6.2%). Of note, 22 (17.1%) respondents reported using CBD to control their addiction and 54 (41.9%) reported using CBD to ease opioid withdrawal symptoms. CBD users demonstrated more positive perceptions regarding its legality (β = 0.673, OR = 1.960, 95% CI [1.211, 3.176], p = .006), social acceptance (β = 0.718, OR = 2.051, 95% CI [1.257, 3.341], p = .004), and therapeutic potential compared to non-users. CBD users also had a more positive view of its potential future role in managing addiction (β = 0.613, OR = 1.846, 95% CI [1.181, 2.887], p = .007).ConclusionsThis study highlights a significant association between CBD usage and progressive views regarding CBD among individuals with OUD, suggesting a growing interest in CBD as a potential adjunctive therapy for individuals in substance use treatment. Some patients are already using CBD for anxiety, pain, sleep, depression, or as a harm reduction intervention to control their addiction or for opioid withdrawal symptoms. These findings underscore the importance of integrating patient perspectives into future research and treatment strategies involving CBD in the context of OUD.

Reviewing healthcare quality improvement initiatives: Best practices in management and leadership

This research paper explores best practices in management and leadership for healthcare quality improvement. Emphasizing the critical role of effective leadership, the study examines transformational leadership, interdisciplinary collaboration, and ethical considerations. Technological integration is identified as a critical enabler. Findings underscore the significance of patient-centric approaches and the need for enhanced training programs. Implications for healthcare practice and policy include prioritizing ongoing leadership education, integrating patient perspectives, and strategically investing in technology. The research highlights the interconnectedness of these elements in driving successful quality improvement initiatives. As healthcare systems strive for continuous enhancement, implementing these best practices promises to elevate patient outcomes, foster collaborative cultures, and contribute to the ongoing transformation of healthcare delivery. Keywords: Healthcare Quality Improvement, Leadership Best Practices, Transformational Leadership, Interdisciplinary Collaboration, Technological Integration.

Barriers to accessing cancer care from patients’ perspective: A single cancer center experience.

e13520 Background: Jefferson Einstein Hospital is a safety-net hospital that serves a diverse and primarily disadvantaged community in North Philadelphia. The population in this city has 21.5% of individuals living in poverty, which is almost double the rate in Pennsylvania. According to the National Cancer Institute’s Center to Reduce Cancer Health Disparities (NCI-CRCHD), people from low socioeconomic backgrounds and specific demographics often bear a more significant disease burden than the general U.S. population. Certain population groups experience cancer disparities due to their likelihood of encountering obstacles or barriers in accessing healthcare. This study aims to identify critical barriers hindering the receipt of quality cancer care for the population served by this hospital. Methods: We identified 51 adult patients who received a new cancer diagnosis between 2022 and 2023. Barriers to accessing cancer care were defined through a literature review and expert consensus. These barriers were assessed via a survey containing fixed-choice items aimed at eliciting obstacles to accessing cancer care among newly diagnosed cancer patients undergoing treatment at the hospital. Information on these barriers was collected prospectively during survey administration and analyzed using descriptive statistics. The frequency of specific barriers within the five categories was calculated, and subjects were classified based on the presence or number of barriers. Results: A total of 51 patient surveys were evaluated. Among these surveys, 24 (47%) reported transportation issues, and 3 (6%) reported caregiving responsibilities. Ten (20%) patients encountered economic barriers, while 11 (22%) faced challenges related to their support system. Nineteen (37%) patients experienced barriers related to health literacy, and 15 (29%) specifically struggled with cancer-related health literacy. Additionally, cultural barriers were identified in 12 (24%) patients. Conclusions: Our study highlights the prevalent barriers faced by newly diagnosed cancer patients in accessing cancer care, including transportation, health literacy, financial constraints, and cultural factors. These findings underscore the importance of integrating patient perspectives into future initiatives aimed at addressing these challenges. By prioritizing patient input and enhancing patient navigation programs, we can effectively mitigate these barriers and improve access to cancer care for individuals in need. [Table: see text]

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

A Comprehensive Review of Phototherapy in Atopic Dermatitis: Mechanisms, Modalities, and Clinical Efficacy.

This literature review explores atopic dermatitis and its management, with a focus on phototherapy as a treatment modality. The primary objectives are to elucidate the pathophysiological mechanisms, clinical manifestations, diagnostic criteria, and epidemiology of atopic dermatitis. Additionally, it seeks to explain phototherapy mechanisms, different modalities, and other therapeutic approaches. In this review, we comprehensively examine atopic dermatitis by synthesizing findings from diverse sources over the past 20 years. We investigate the epidemiology, pathophysiology, clinical manifestations, diagnostic criteria, and role of phototherapy in treatment. We conduct thematic analysis, compare phototherapy modalities, consider contextual factors, and integrate patient perspectives while upholding ethical considerations. Limitations include potential publication bias, language barriers, temporal constraints, subjectivity, and limited generalizability. Atopic dermatitis has a complex pathogenesis and can be managed with diverse modalities. Phototherapy emerges as an effective and safe treatment, particularly when other therapies prove ineffective.

A Patient-Centric Approach to Sickle Cell Disease Clinical Trials: Integrating Patient Perspectives in the RISE UP Phase 2/3 Trial of Mitapivat for Informed Protocol Design and Associated Patient Community Benefit

Background: Sickle cell disease (SCD) is a genetic blood disorder that affects millions of people worldwide. There are currently limited treatment options and a high unmet need; new therapies - and therefore new trials - are essential. Although there is evidence of growing patient (pt) participation in the drug development processes, there is a lingering suspicion among the community that they are not treated as equal partners and too frequently regarded as mere data sources. Involving pts in planning and execution of clinical trials is essential to improve participation and meet the real needs of the patient community. Mitapivat is a first-in-class, oral, allosteric activator of pyruvate kinase (PK), approved by the United States Food and Drug Administration for the treatment of hemolytic anemia in adults with PK deficiency, by the European Union European Medicines Agency, and the Medicines and Healthcare products Regulatory Agency in Great Britain for the treatment of PK deficiency in adults. The RISE UP phase 2/3 trial (NCT05031780) of mitapivat in pts with SCD was therefore devised to use a new approach to clinical trial design and recruitment that considered pt preferences wherever possible. Objective: Using the RISE UP Phase 2/3 trial, redefine best practices in clinical trial design by asking pts with SCD to describe what matters most to them in a trial setting and by involving them in decision making processes and trial awareness communications. Methods: Nine SCD pts and advocates (five from the US, one from Bahrain, one from France and two from the UK) took part in a series of clinical trial design workshops. Four remote advisory board interviews were held with pts (>16 years of age) and advocates to consult on the RISE UP Phase 2/3 clinical trial design. The insights gained from these consultations were incorporated into the proposed trial protocol design that was subsequently shared with Health Authorities (HAs) for their comment from a regulatory perspective. Once finalized, feedback from HAs was presented to the steering committee to determine whether changes requested by HAs met the needs and barriers-to-uptake expressed during partner consultations. In addition, a group of seven patients were involved in the development of the RISE UP phase 2/3 clinical trial awareness campaign, which sought to educate the community about the RISE UP clinical trial and value of pt participation. Results: Pt contributions to the protocol design included modified inclusion/exclusion criteria and the addition of pain (beyond pain crises) and fatigue as study outcomes. An overview of the community feedback is shown in Table 1. In response to pt input, monthly study visits were implemented for seven months, followed by visits every three months. An open label extension period was also added with visits on the second, fourth, eighth, and twelfth weeks of the extension period, followed by every 3 months up to 1.5 years and every six months thereafter. Taking additional pt input into account, the trial was adjusted to include a recommendation for tailored management of SCD pain crises using a daily diary. Additionally, following patient recommendations, the trial approved reimbursement for study-related travel, lodging, and specific non-study assessments. The RISE UP communications campaign was effective, with heightened interest in clinical trial participation generated within the community. Strong social media engagement and digital efforts resulted in increased trial website views, and community education and awareness efforts resulted in increased clinicaltrials.gov views to an average of 2-3 clicks per day. Approximately 278,000 users visited the RISE UP website and the campaign's YouTube video, which launched on World Sickle Cell Day has attracted 3 million views since Q4 2022. Conclusion: To meet the needs of the SCD pt and caregiver community and advance clinical trial research, we implemented a patient-centered approach to clinical trial protocol design and trial recruitment. Overall, this patient-centric approach could be useful in improving community engagement, designing trials that better reflect the needs and concerns of the pt population, and ultimately improving pt participation and diverse representation in clinical trials.

Integrative Medicine Approaches: Bridging the Gap Between Conventional and Renal Complementary Therapies.

The global incidence of renal disorders is on the rise, demanding the implementation of novel and comprehensive strategies for patient care. The present study demonstrates the significance of renal health, offering a comprehensive comprehension of renal physiology and the escalating load of renal illnesses. The relevance of controlling renal illnesses is underscored by a thorough examination of conventional treatments, which encompass pharmaceutical interventions, dialysis, and transplantation. Subsequently, the story redirects its attention towards complementary therapies, classifying them into several categories, such as herbal medicine, acupuncture, dietary supplements, and mind-body activities, among various others. This paper presents a comprehensive examination of the available information, providing a critical study of the effectiveness and safety of alternative therapies in renal care. This study focuses on the central idea of integrative medicine, distinguished by its patient-centered and holistic approach and its seamless integration of conventional and complementary therapies. This study examines several integrative care models, using case studies to illustrate successful integrative approaches that have enhanced patient outcomes. The review thoroughly examines the current body of literature on integrative renal care, including meta-analyses, systematic reviews, and notable research discoveries. This study highlights the need for further research to address knowledge gaps and explore areas that require additional examination. These findings emphasize the importance of future research endeavors in this crucial sector. In addition, the paper thoroughly examines the safety issues and regulatory factors pertaining to complementary therapies, underscoring the importance of making educated decisions and maintaining diligent monitoring to safeguard patients' well-being. Integrating patient perspectives, experiences, and shared decision-making is essential to the integrated healthcare process, promoting a collaborative and patient-centered approach. The study culminates by providing a concise overview of the primary discoveries and delineating the ramifications of implementing therapeutic procedures. This statement underscores the considerable potential of integrative medicine in augmenting renal care, ultimately leading to enhanced patient outcomes and an improved overall quality of life for persons with renal diseases. Also, this literature review provides a thorough and knowledgeable examination of the incorporation of conventional and complementary therapies in the context of renal health. It gives valuable perspectives for healthcare practitioners, researchers, and policymakers interested in enhancing care strategies for individuals with renal conditions.

Commentary: Patient Perspectives on Artificial Intelligence; What have We Learned and How Should We Move Forward?

Artificial intelligence (AI) in healthcare has now begun to make its contributions to real-world patient care with varying degrees of both public and clinical acceptability around it. The heavy investment from governments, industry and academia needed to reach this point has helped to surface different perspectives on AI. As clinical AI applications become a reality, however, there is an increasing need to harness and integrate patient perspectives, which address the distinct needs of different populations, healthcare systems and clinical problems more closely. Despite this need, patient perspectives on AI implementation have little presence in academic literature and within implementation science and are not sufficiently considered throughout the MedTech and eHealthtech product development cycle, which brings its own challenges and opportunities. This joint patient expert/clinician commentary aims to briefly summarise views on AI. It reflects upon recommendations on how stakeholders such as clinicians and Health & MedTech small and medium-sized enterprises (SMEs) can make practical usage of these views. The recommendations of the authors centre around how to work better with patients to enable both product centric and patient centric innovation and person-centred care.

Principles of patient partnership: integrating patient perspectives into ERS Clinical Research Collaborations.

Patient and public involvement in research is increasingly considered a cornerstone of good research practice, and the research community recognises people with lived experience as valuable stakeholders within the research process. European Respiratory Society (ERS) strongly encourages patient input into its research programme and scientific activities, working in partnership with the European Lung Foundation (ELF) to facilitate this. Based on the ERS and ELF experience and best practice in the field of patient and public involvement, we developed a set of principles to which future ERS and ELF collaborations should adhere. These principles provide guidance on how to address key challenges when planning and conducting patient and public involvement in order to develop successful partnerships with patients and drive forward patient-centred research.

Integrating Patient-reported Experience (PRE) in a multistage approach to study access to health services for women with chronic illness and migration experience.

Patient-reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12)and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettesand policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production. Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflectand rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co-producers for system-level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland. Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient-doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice. Women with chronic illness and immigration experience contributed to interview-guideline development, provided PREs in interviews, identified priority areas for health-service changeand actively participated in the development of practice recommendations.

Developing a self-management package for pulmonary fibrosis: an international Delphi study.

Self-management is considered as an important part of disease management for people with pulmonary fibrosis (PF), but there is a lack of consensus regarding what components should be included. This study aimed to attain consensus from experts in PF and people living with the disease on the essential components and format of a PF self-management package. A two-round Delphi process was conducted. In each round, a panel of experts completed an online survey to rate a range of components, formats and delivery methods, followed by an online patient focus group to integrate patient perspectives. Consensus was defined a priori. 45 experts participated in Round 1 and 51 in Round 2. Both focus groups included six people with PF. 12 components were considered essential for self-management in PF: 1) understanding treatment options; 2) understanding and accessing clinical trials; 3) managing medications; 4) role of oxygen therapy; 5) role and importance of pulmonary rehabilitation and regular physical activity; 6) managing shortness of breath; 7) managing fatigue; 8) managing mood; 9) managing comorbidities; 10) smoking cessation advice and support; 11) accessing community support; and 12) how to communicate with others when living with PF. Both groups agreed that self-management in PF required individualisation, goal setting and feedback. This study identified 12 essential components and highlighted individualisation, goal setting and feedback in self-management of PF. The findings provide a basis for the development of PF self-management interventions.

The burden of a brain tumor: guiding patient centric care in neuro-oncology

Brain tumor patients report an overwhelming sense of uncertainty when navigating the course of their terminal disease. Historically, organizational experts and/or treating physicians have established neuro-oncology programs. However, given the disease burden and incurable nature of current medical treatments, patient-centric care should be prioritized alongside institutional and academic objectives. Integrating patient perspectives into interdisciplinary programmatic development can improve comprehensive care and empower patients to advocate for their own quality healthcare needs. Data was derived from four focus groups with adult brain tumor patients (N = 15; Mage = 46years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients' care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on quality of life and psychological distress reduction for both patients and their loved ones. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (Mkappa = 0.92, range= 0.85-0.93) was achieved. Six distinct themes emerged, where the frequency of each theme ranged from 12.5 to 23.3%. Specifically, patients discussed relational concerns, navigation of interdisciplinary care, neurobehavioral impacts, emotional responses to stressors, existential concerns, and caregiver support. A discussion of themes follows. It is imperative that we include the patient perspective in the development of neuro-oncology programs; considering the quality of survival in addition to quantity. Neuro-oncology quality care themes identified were relational concerns, navigating interdisciplinary care, neurobehavioral impact, emotional response to stressors, existential concerns, and caregiver support. A paramount concentration for comprehensive neuro-oncology programs must include patients' quality needs.

Reconceptualizing Care Transitions Research From the Patient Perspective.

Reconceptualizing Care Transitions Research From the Patient Perspective.

Integrating patient perspectives in the development of a mobile health intervention to address chronic pain and heavy drinking in primary care: a qualitative study of patients in an urban, safety-net hospital setting

BackgroundChronic pain and heavy drinking are conditions that commonly co-occur among primary care patients. Despite the availability of behavioral interventions that target these conditions individually, engagement and adherence to treatment remain a challenge, and there have been no interventions designed to address both of these conditions together for patients presenting to primary care. This study seeks to incorporate the perspectives of patients regarding symptoms, treatment experiences, views on behavior change, and technology use to develop a tailored, integrated mobile health intervention that addresses both pain and heavy drinking among patients in primary care.MethodsTwelve participants with moderate or greater chronic pain intensity and heavy drinking were recruited from primary care clinics in a large urban safety-net hospital. One-on-one interviews were recorded and transcribed. Codes were developed from interview transcripts, followed by thematic analysis in which specific meanings were assigned to codes. Participants also completed a series of Likert-based rating scales to evaluate components of the proposed intervention to supplement qualitative interviews.ResultsA number of themes were identified that had implications for intervention tailoring including: ambivalence about changing drinking, low expectations about pain treatment success, desire for contact with a designated provider, common use of smartphones but lack of familiarity with functions as a potential barrier to use, and strategies to maintain engagement and adherence. Evaluative ratings indicated that the proposed intervention content was perceived as helpful and the proposed structure, layout and design of the mobile intervention was acceptable to patients.ConclusionsResults supported the view that a mobile health intervention delivered via smartphone with electronic coaching is an acceptable method of addressing chronic pain and heavy drinking among patients in primary care. The interviews highlight the need to utilize an intervention approach that addresses motivation to change drinking, sets realistic expectations for change, provides careful attention to training/education of the use of technology components, and fosters engagement through the use of reminders, feedback, and personalized activities.

Integrating Patient Perspectives into Medical Device Regulatory Decision Making to Advance Innovation in Kidney Disease.

Understanding patient perspectives is critical to developing tailored care approaches that address patients’ needs and wants, with the ultimate goal of improving patient satisfaction and quality of life. Methods to better measure patients’ experiences living with their condition and its

The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.

The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof‐of‐concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi‐structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi‐structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research.Lay SummaryWe used a community‐based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286–1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.