Patient-centered Care Research Articles

Abstract B160: Assessing patient experience in cancer clinical trial participants: Results from a rapid umbrella review with an equity lens

Abstract Introduction: Clinical trials are an important part of cancer care, yet research assessing patient experience in cancer clinical trials is sparse. Ensuring that the patient voice is heard and valued in the context of clinical trials is critical to the delivery of high-quality, patient-centered, and equitable cancer care. Furthermore, understanding the aspects of cancer clinical trials that are important to and reported by patients may inform strategies to address barriers to clinical trial participation, improve diversity in clinical trials, and advance health equity, particularly among populations underrepresented in clinical research. This rapid umbrella review sought to understand how patient experience is assessed in cancer clinical trials and to identify opportunities to integrate an equity lens. Methods: PubMed, Embase, Cochrane, and CINAHL databases were searched for systematic reviews that identify and describe development, use, or testing of tools/instruments assessing patient experience of cancer clinical trial patients. The search strategy was collaboratively developed with an NIH Librarian, using a combination of key terms to describe: 1) patient experience, 2) clinical trials, 3) healthcare delivery, and ) systematic reviews. The search was limited to publications in the English language and a date range of 2018-2024. One co-author completed the title and abstract review based on the inclusion criteria. Two reviewers will then independently completed the full text review, quality appraisal, and data abstraction for all included studies. All authors will synthesize data into matrix tables and narratively summarize into key themes. Discrepancies were resolved through discussion. Results: Out of 1,751 yielded search results, 151 articles were preliminarily identified. Upon further reading of the full texts, the final list of included articles meeting inclusion criteria will be reported using Covidence. Summary findings from this rapid umbrella review will include the number of studies identified, clinical trials population, a description of the patient experience measures, domains, findings, as well as opportunities for health equity integration using the PROGRESS-Plus Framework. Conclusion: Equitable representation in clinical trials will require intentional efforts to understand and enhance the experience of patients on clinical trials across diverse patient populations, as well as address barriers to participation. However, there are several research gaps that limit our understanding in this area, including a lack of consistent definitions, patient experience domains; availability and use of standardized, validated measures for clinical trial populations, and knowledge about what factors differ and influence patients’ experiences, particularly among populations underrepresented in clinical research. Attention to these gaps will facilitate a greater understanding of patient needs, experiences, and barriers, and may promote actionable strategies to increase access to, inclusion of, and diversity in cancer clinical trials. Citation Format: Brenda Adjei, Katrina Makres, Eric Juarez, Sae-Jin E Lee, Lynne Padgett. Assessing patient experience in cancer clinical trial participants: Results from a rapid umbrella review with an equity lens [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B160.

Abstract B023: Incorporating the Patient Voice: An Evaluation of NCI-Designated Cancer Centers and Patient Reported Experiences with Genomic Medicine

Abstract Since the National Cancer Act established the Cancer Centers Program in 1971, NCI-designated cancer centers (NCI-CCs) throughout the country have been mandated to translate state-of-the-art cancer research to communities and enhance clinical care for patients within their catchment areas, including minority and underrepresented populations. Precision oncology, which leverages genetics to optimize personalized treatment plans for patients, has promising potential to address cancer health disparities. In this era of targeted personalized care, though genetics has been incorporated into cancer centers, it is unknown how these innovations are being communicated to the public and communities served. There is particularly limited knowledge surrounding how cancer centers may integrate patient reported experiences with genomics into fulfilling their overall mission and reducing cancer health disparities. The objective of this study was to evaluate how cancer centers are publicly sharing information related to their work in understanding and assessing patient experiences with the use of genetics to guide cancer care. For all NCI-CCs involved in clinical care (n=65), we conducted a review of publicly available and published information, using each cancer center website as a point of origin. While almost all the NCI-CCs discuss providing personalized care and perform genetic testing, we found that the majority (51%) indicate that they assess patient-reported outcomes with genomic medicine, such as symptom monitoring during clinical trials. Fewer (38%) indicated having at least one study or that they assess patient experiences and perspectives with genomic medicine that extended to broader measures, like hereditary testing or pharmacogenomic testing to guide treatment. Forty-five percent of NCI-CCs indicate that any pharmacogenomic testing is performed through standard care, research studies, or otherwise. Finally, about 1 in 3 (35%) indicate that they have departmental resources dedicated to monitoring patient experience at their institutions. Some centers described having an established infrastructure dedicated to measuring and incorporating patient reported experiences into programmatic activities, such as offices and annual events dedicated to patient experience. These centers reflecting a built-in infrastructure were 8 to 12% more likely to publicly communicate and describe targeted activities to assess patient reported outcomes and experiences with genomic medicine and/or provide genetic testing. The use of genomics in research and clinical care continues to expand, yet its impact on the minority and underrepresented communities that cancer centers serve remains uncharacterized. Comprehensive understanding of patient reported experience with genomic medicine is lagging and serves as a key opportunity to potentially address cancer health disparities. As leaders in cancer care, NCI-CCs have the opportunity to enhance communication with communities surrounding genomics and improve the patient-centered care they provide. Citation Format: Amanda S. Andriessen, Loren Saulsberry. Incorporating the Patient Voice: An Evaluation of NCI-Designated Cancer Centers and Patient Reported Experiences with Genomic Medicine [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B023.

Abstract A115: Utilizing digital storytelling to improve the recruitment of Black and Hispanic patients for a genetic predisposition to prostate cancer screening trial

Abstract Introduction: Clinical genomics leads to more effective cancer prevention, diagnosis, and treatment. Prostate cancer (PC) significantly impacts Black and Hispanic men, but participation in clinical trials and PC risk management methods like genetic testing and screening remains low. Barriers to diversity and inclusion in clinical trials include cultural and socioeconomic factors. Digital storytelling is an effective tool for building trust and increasing community engagement. We aim to develop and assess the use of digital storytelling to improve recruitment of Black and Hispanic patients in a trial for men at high genetic risk for developing PC (clinicaltrials.gov NCT03805919) and raise awareness of genetic testing and enrollment in clinical trials within these communities. Methods: Guided by the Assessing Community Engagement Conceptual Model, we will establish a community advisory panel (CAP) comprised of patient advocates, community, and clinical partners with a strong interest in increasing clinical trial representation of Black and Hispanic patients at high genetic risk for developing PC. CAP participants will be identified from existing partners and through snowballing techniques, which involve asking partners to recommend other CAP participants. The CAP will co-design storytelling interview questions, baseline, and outcome assessments and collectively determine effective methods for digital story dissemination. To evaluate the impact of storytelling on awareness, interest, and participation in genetic testing, medical management, and clinical trial recruitment among Black and Hispanic men, outcome assessments co-designed with the CAP will be administered pre and post-video viewing and include viewer qualitative interviews. Results: Filmed interviews with Black and Hispanic participants will be conducted. Interviews will focus on participant experiences with clinical trials, genetic testing, and cancer risk management. Interview transcripts will be in English and Spanish with forward and back translation to ensure accuracy using National Institutes of Health resources. Local and national partners, community organizations, faith-based institutions, healthcare facilities, and advocacy groups identified by the CAP will facilitate dissemination. Digital stories will be distributed across various multimedia platforms to maximize outreach and accessibility, including community web platforms, social media channels, podcasts, local radio stations, educational workshops, health fairs, cultural events, churches, and support groups. Conclusion: Building strategies for improving patient-centered care delivery and community engagement within culturally diverse populations will enhance clinical trial diversity and inclusion. Using digital storytelling as a recruitment strategy for clinical trials can foster trust, engagement, and participation within Black and Hispanic communities. Study findings will contribute to future clinical trial design and recruitment to enhance underrepresented minority participation in clinical research. Citation Format: Yi Liu, Brenda Adjei, Anna Couvillon, Kathleen Calzone, Fatima Karzai. Utilizing digital storytelling to improve the recruitment of Black and Hispanic patients for a genetic predisposition to prostate cancer screening trial [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A115.

Hospital discharge processes: Insights from patients, caregivers, and staff in an Australian healthcare setting

Hospital discharge is a pivotal point in healthcare delivery, impacting patient outcomes and resource utilisation. Ineffective discharge processes contribute to unplanned hospital readmissions. This study explored hospital discharge process from the perspectives of patients, caregivers, and healthcare staff. Qualitative data were collected through semi-structured interviews with adult patients being discharged home from a medical ward, their caregivers, and healthcare staff at an Australian hospital. Thematic analysis followed established guidelines for qualitative research. A total of 65 interviews and 21 structured observations were completed. There were three themes: i) Communication, ii) System Pressure, and iii) Continuing Care. The theme ‘Communication’ highlighted challenges and inconsistencies in notifying patients, caregivers, and staff about discharge plans, leading to patient stress and frustration. Information overload during discharge hindered patient comprehension and satisfaction. Staff identified communication gaps between teams, resulting in uncertainty regarding discharge logistics. The theme ‘System Pressure’ referred to pressure to discharge patients quickly to free hospital capacity occasionally, even in the face of inadequate service provision on weekends and out-of-hours. The ‘Continuing Care’ theme drew attention to gaps in patient understanding of follow-up appointments, underscoring the need for clearer post-discharge instructions. The lack of structured systems for tracking referrals and post-discharge care coordination was also highlighted, potentially leading to fragmented care. The findings resonate with international literature and the current emphasis in Australia on improving communication during care transitions. Furthermore, the study highlights the tension between patient-centred care and health service pressure for bed availability, resulting in perceptions of premature discharges and unplanned readmissions. It underscores the need for strengthening community-based support and systems for tracking referrals to improve care continuity. These findings have implications for patient experience and safety and suggest the need for targeted interventions to optimise the discharge process.

Definition and diagnosis of Parkinson’s disease: guideline “Parkinson’s disease” of the German Society of Neurology

Abstract Background Accurate definition and operational criteria for diagnosing Parkinson’s disease (PD) are crucial for evidence-based, patient-centered care. Objective To offer evidence-based recommendations for defining and diagnosing PD, incorporating contemporary clinical, imaging, biomarker, and genetic insights. Methods The guideline development began with the steering committee establishing key PICO (patient, intervention, comparison, outcome) questions, which were refined by the coauthors. Systematic literature searches identified relevant studies, reviews, and meta-analyses. Recommendations were drafted, evaluated, optimized, and voted upon by the German Parkinson’s Guideline Group. Results Parkinson’s disease (PD) is now understood to encompass a broader spectrum of etiologies than previously recognized. Advances in molecular pathogenesis, neuroimaging, and early clinical phenotypes suggest that PD is not a uniform disease entity and is often not idiopathic. This necessitates an updated framework for PD definition and diagnosis. The German Society for Neurology now endorses a broader concept of PD, incorporating both idiopathic and hereditary forms, as opposed to the previously narrower concept of “idiopathic Parkinson syndrome.” The revised guidelines recommend using the 2015 Movement Disorders Society diagnostic criteria, emphasize the importance of long-term clinical follow-up for improved diagnostic accuracy, and highlight the significance of non-motor symptoms in clinical diagnosis. Specific recommendations are provided for the use of imaging and fluid biomarkers and genetic testing to support the clinical diagnosis. Conclusion The updated guidelines from the German Society for Neurology enhance diagnostic accuracy for PD, promoting optimized clinical care.

Global Epidemiology of Cirrhosis in Women

Recent epidemiological evidence indicates a significant rise in cirrhosis burden over the past two decades in all parts of the world, with cirrhosis incidence rates and related deaths escalating quickly. Women face unique risk factors and susceptibility to chronic liver diseases compared to men, underscoring the need for a sex-specific approach in early identification, reversal of causative factors, and complications prevention. This review aims to explore epidemiological trends and sex-specific factors contributing to the global epidemiology of cirrhosis among females today. While cirrhosis prevalence remains higher in males globally, the incidence rate from 2010 to 2019 grew faster among females. The female-to-male incidence ratio of metabolic-associated steatotic liver disease (MASLD) related cirrhosis globally in 2019 was 1.3, indicating a shifting trend towards new diagnoses among women now surpassing that of men. Alcohol-associated cirrhosis (AC) epidemiology is also changing, with trends towards equal incidence of AC between both sexes, particularly in industrialized nations with increased alcohol accessibility. Cirrhosis from viral hepatitis remains the main etiology among females in endemic regions. Sex differences in epidemiology are likely multifactorial, influenced by varying risk factors, susceptibility and behaviors between sexes. Further research is necessary to better understand these disparities and to tailor sex-specific interventions towards improved management and treatment strategies, ultimately enhancing outcomes for women with cirrhosis and providing better patient-centered care.

Investigating the Salience of Clinical Meaningfulness and Clinically Meaningful Outcomes in Metastatic Breast Cancer Care Delivery

PURPOSE As metastatic breast cancer (mBC) treatment evolves, there is a need to understand how clinical meaningfulness, or a meaningful change in a patient's daily life, and clinically meaningful outcomes inform patient-centered care. Partnering with key stakeholders ensures patient-centered research incorporates the knowledge and expertise of advisors with lived experience. We describe a multistakeholder engagement approach to examine how people living with mBC (PLWmBC), caregivers, and health care providers interpret clinical meaningfulness and clinically meaningful outcomes and their influence on mBC treatment decision making and care. METHODS Qualitative focus groups with PLWmBC, caregivers, and health care providers were conducted and analyzed along three overarching themes: interpretations of clinical meaningfulness and clinically meaningful outcomes; treatment recommendations, preferences, and decisions; and implications for clinical practice. Patient-led and professional organizations served as research partners in study design, implementation, and interpretation of findings. RESULTS Partnerships were established with four patient-led and three professional organizations representing diverse constituencies throughout the United States. Twenty-two focus groups were conducted with 50 PLWmBC, 24 caregivers, and 41 health care providers (oncologists, n = 11; advanced practice providers, n = 13; oncology nurses, n = 17) between March and June 2023. PLWmBC and caregivers were unfamiliar with the concepts of clinical meaningfulness and clinically meaningful outcomes. Although health care providers were familiar, they did not use the terms when discussing treatment with PLWmBC. Across groups, participants emphasized the importance of meaningful outcomes beyond overall survival, including quality of life and improvement in symptoms and functioning. Participants noted that outcomes considered meaningful are individualized and dynamic. CONCLUSION This study offers insight into how partnering with patient advocacy and professional organizations can enhance research quality and aid translation of findings to clinical practice, thereby supporting patient-centered care.

Did they receive it? Direct Benefit Transfer to tuberculosis patients in Raigarh district, Chhattisgarh, India - A mixed methods study

BackgroundNutrition support plays critical role in patient centered care of TB. India launched a direct benefit scheme Nikshay Poshan Yojana (NPY) in 2018. However, there is sparse evidence of its implementation status in Chhattisgarh. ObjectivesTo determine the proportion receiving the NPY incentives, its timeliness and factors associated with non-payment and delays, and to assess utilization patterns of Direct Benefit Transfer (DBT) among the beneficiaries. MethodsIt was a mixed-method study, with quantitative component of (Cross-sectional) followed by qualitative component (Descriptive). The data of all tuberculosis patients notified during April 2021toMarch 2022 in Raigarh, Chhattisgarh, India, were extracted from Nikshay-Portal. Beneficiaries registered for treatment in last quarter of 2021–2022, were also contacted to assess the utilization patterns of DBT. Eighteen health care providers (HCPs) were interviewed one-on-one to assess their perception regarding challenges in implementation of NPY and possible solutions. ResultsOf 2161 TB patients started on TB treatment, 1912(88.8 %) received at least one benefit. More than half (59.6 %; 1140/1912) of the TB patients who received at least one benefit, received their first benefit within 56 days of notification. Among 255 who responded for utilization pattern of DBT, nearly one third (n = 73,28.6 %) reported to have utilized DBT for buying food. The main challenges for non-receipt/delay in benefits were: difficulty opening bank accounts; “dormant” account policy; changing of Indian Financial System Code (IFSC) of rural and nationalized merged banks; poor internet connectivity; and shortage of human resources or workforce not distributed according to geographic location. ConclusionNearly nine out of ten patients received at least one benefit under NPY. However, its utilization for treatment purposes was limited. Bank related, patient related and provider related factors posed major challenges in smooth implementation of the scheme. To improve the scheme's coverage, flexible account opening policies with offline Nikshay-Portal features are required.

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.

Understanding the influences on hospital discharge decision-making from patient, carer and staff perspectives

BackgroundGaps in discharge planning are experienced by 41% of hospital patients in Australia. There is an established body of knowledge regarding the features of the discharge process that need to be improved to avoid subsequent hospital readmission and enhance the discharge experience. However, many of these studies have focused solely on factors related to unplanned hospital readmissions and there has been limited success in operationalising improvements to the discharge process. The aim of this study was to explore and describe the factors that influence the decision to discharge adult medical patients from hospital, from patient, carer and staff perspectives.MethodsA qualitative descriptive study was conducted in one acute medical ward in Melbourne, Australia. The study data were collected by observations of clinical practice and semi-structured interviews with patients, carers and staff. Participants were: i) English-speaking adults identified for discharge home, ii) patient carers, and iii) staff involved in the discharge process. Observation data were analysed using content analysis and interviews data were analysed using thematic analysis.ResultsTwenty-one discharges were observed, and 65 participants were interviewed: 21 patients, two carers, and 42 staff. Most patients (76%) were identified as being ready for discharge during morning medical rounds, and 90% of discharge decisions were made collaboratively by the medical team and the patient. Carers were observed to be notified in 15 discharges by the patient (n = 8), doctors (n = 4), or nursing staff (n = 3). Five themes were constructed from thematic analysis of interviews: Readiness for Home, Fragmented Collaboration, Health Literacy, Unrealistic Expectations, and Care beyond Discharge. A collaborative team and supportive carers were considered to enhance risk assessment and discharge planning, however fragmented communication between clinicians, and between clinicians and patients/carers was a barrier to discharge decision-making.ConclusionsOur study highlights the need for a more coordinated approach to discharge decision-making that optimises communication with patients and carers and multidisciplinary workflows and reduces fragmentation. The importance of patient-centred care and a personalised approach to care are well established. However, there is a need to design systems to customise the entirety of the patient journey, including the approach to discharge decision making.

Health Community 4.0: An Innovative Multidisciplinary Solution for Tailored Healthcare Assistance Management.

This paper presents a co-designed solution aimed at improving community healthcare assistance management. To enhance patients' self-awareness of their health status, encouraging active participation in care process, and to support nurses in delivering patient-centered care, we have developed an innovative platform with a highly customized app. This platform was designed using a multi-disciplinary, bottom-up approach. Patient data collection and processing facilitate the automation of care timeline planning, based on real-time patients' needs and the available resources. To achieve this goal, different components have been considered: real-time health data collection and processing, patient care planning, decision support for nurses, secure communication for data transmission, and user-friendly interfaces to ensure easy access to platform functionalities.

Enhancing patient-provider encounters when proposing SDF therapy by utilizing a qualitative analysis of parental feedback.

Silver Diamine Fluoride (SDF) is a minimally invasive option for caries arrest, part of a paradigm shift in the management of pediatric dental caries. The perspective of parents regarding the long-term pros and cons of this therapy should be understood in order to achieve optimal patient-centered care. This study used Constant comparative analysis as an analytic approach, applying the Precaution-Adoption Process Model (PAPM) as the Grounded Theory framework in the qualitative analysis of 30 parental unformatted, spontaneous comments collected at the end of a questionnaire to evaluate their satisfaction with treatment provided at a University Clinic. Our analysis provided important insights about the factors that influenced the parents' decision to act and have their child receive SDF therapy, their perception of the outcomes, the necessary follow-ups after the therapy, and what impacted on their overall satisfaction with the completed procedure. Both positive and negative themes were identified. The positive themes point to SDF treatment's ease of application and addressing the immediate treatment needs on children with limited cooperation. The negative themes identified the adverse consequences of SDF treatment, specifically, the duration and appearance of the cosmetic consequences, as well as the parents' misunderstandings and incorrect expectations of the long-term sustainability of the treatment, which in many instances requires further interventions. It was also evident from the parents' comments that they needed additional educational guidance on other aspects of the treatment, such as the necessity for clinical follow-ups, information that impacted parents' overall satisfaction with the treatment their child received. Our results highlight the need to discuss the short and long term benefits of the treatment, as well as, its short and long-term limitations. Specifically, while it is important to discuss immediate outcomes and consequences, such as the ease of treatment and the resultant staining, to ensure that parental consent for the treatment is truly well-informed, it is also important to prepare parents, when this procedure is initially proposed, of the likely need for additional oral care interventions in the future.

Health workforce forecast in the university hospital: evidence from Lithuania

BackgroundThe increasing shortage of staff in healthcare facilities worldwide calls for a human resource planning strategy in order to ensure safe, timely and patient-centred care. The purpose of this paper is to provide an analysis and supply and demand projections of nurses, midwives, and radiographers within the labor market of the largest university hospital in the Baltic States by 2030.MethodsThe staff supply was calculated on the intake and outflow of persons in the labour market annually for various factors. Projections for the demand of nurses, midwives, and radiographers took into account the different needs of the population, categorized by gender and age, for the services offered within the institution.ResultsThe analysis highlights significant projected shortages in the supply of nurses and radiographers by 2030, while the supply of midwives is expected to meet the demand. The projected supply of nurses in 2030 will be lower than in 2021. Projected nurses demand in 2025 according medium scenario - shortage of 59 nurses, on prospective scenario - of 331 nurses. In 2030 according medium scenario - shortage of 173 nurses on prospective - of 772 nurses. The projected supply of radiographers in 2030 will be higher than in 2021. Projected radiographers demand in prospective scenario which is the most likely in 2025 - shortage of 26 and in 2030 - shortage of 52 radiographers. The projected supply of midwives in 2030 will be higher than in 2021. The variables influencing the increase in the demand for midwives did not exceed the projected supply in the institution, indicating a balanced supply-demand scenario for midwives.ConclusionsDue to the rising demand for nurse and radiographer services from the aging population, the predicted supply of nurses and radiographers will be insufficient. To ensure the projected demand for nurses in the medium and prospective scenarios, the nurses recruited each year should increase up to 38% in the medium scenario and 69% in the prospective scenario from 2022. In the prospective demand scenario, the recruitment of radiographers should increase three-fold and the recruitment of midwives should be reduced by 30%.

Mobile Patient-Provider Communication and Lifestyle Improvement: Examining the Role of Mobile Technology Identity and Health Empowerment

ABSTRACT In the span of a decade, smartphones have gained popularity and acceptance among both patients and physicians thanks to their advantages in health care delivery. However, research investigating mobile patient-provider communication (MPPC) and its impact on patients’ lifestyles is only just beginning. Drawing on the pathway model of health communication and mobile technology (MTI) theory, we developed a research model to explore the effect of MPPC on lifestyle improvement, using health empowerment as a mediator and MTI as a moderator. The findings from 432 participants (Mage = 32.5 years old, female = 212) suggested that after controlling for respondents’ age, gender, education, income, and general health status, having greater communication with healthcare providers through mobile devices was positively related to lifestyle improvement and that health empowerment mediated this relationship. Moreover, MTI-emotional energy (MTIE) moderated the direct relationship between MPPC and lifestyle improvement, while MTI-dependency (MTID) moderated the indirect impact of MPPC. Individuals who hold a greater MTIE/MTID were more likely to benefit from MPPC such that they are more likely to be empowered for self-care and maintain healthy lifestyles. This study not only contributes to the growing literature on mobile health communication but also plays a reference role for interventions in patient empowerment and health promotion. Theoretical and practical implications were discussed.

Measurement of Patients' Acceptable Symptom Levels and Priorities for Symptom Improvement in Advanced Prostate Cancer.

Limited research has evaluated the success criteria and priorities for symptom improvement of patients with cancer to inform patient-centered care. In this study, we adapted and tested a measure of these constructs, the Patient-Centered Outcomes Questionnaire (PCOQ), for patients with advanced prostate cancer. We compared acceptable symptom severity levels following symptom treatment across 10 symptoms and identified patient subgroups based on symptom importance. Patients with advanced prostate cancer (N = 99) participated in a one-time survey, which included a modified version of the PCOQ, standard symptom measures, and additional clinical characteristics. The modified PCOQ demonstrated construct validity through its correlations with related theoretical constructs. There was a moderate correlation between symptom severity and importance. Acceptable symptom severity levels were generally low, with sexual dysfunction having a higher acceptable severity than most other symptoms. Three patient subgroups were identified: (1) those who rated all symptoms as low in importance (n = 43); (2) those who rated all symptoms as moderately important (n = 33); and (3) those who rated all symptoms as highly important (n= 18). Subgroups were associated with functional status, fatigue, sleep problems, pain, and emotional distress. The modified PCOQ demonstrated preliminary evidence of construct validity. Patients generally considered low symptom severity to be acceptable, with variations across symptoms. Results suggest that symptom severity and importance are related but distinct aspects of the symptom experience in advanced prostate cancer. Patients' diverse priorities for symptom improvement point to the need for individualized treatment plans.

Impact of expected blood pressure reduction on patient preferences for pharmaceutical and renal denervation treatment.

Effective patient-centered care requires an adequate understanding of patient preferences for different therapeutic options. We modelled patient preference for blood pressure (BP) management by pharmaceutical or interventional treatments such as renal denervation in patients with different profiles of uncontrolled hypertension. Modeling was based on the findings from a previously conducted quantitative discrete choice experiment (DCE). The likelihood of selecting either an interventional treatment option or additional antihypertensive medication option was calculated for three patient profiles that represent the range of patients with hypertension commonly encountered in clinical practice: treatment-naive, patients with uncontrolled BP while on one to three antihypertensive medications, and patients with drug-resistant hypertension. Variables in the preference model were treatment attributes from the DCE study: expected reduction in office SBP with each treatment, duration of treatment effect, risk of reversible drug side effects from drugs, and risk of temporary pain and/or bruising or vascular injury from interventions. Values of the variables were derived from published clinical studies or expert opinion. The model predicted that the likelihood of choosing renal denervation over initiating pharmacotherapy was 17.2% for previously untreated patients, 23.7% for patients with moderate hypertension currently on pharmacotherapy, and 41.8% for patients with drug-resistant hypertension. The dominant variable driving preference in these models was the expected BP reduction. Patient preferences for intervention are greater when drug nonadherence or increased SBP reduction at 3 vs. 1 year are included in the model. Baseline BP, drug side effects, or risks of the procedure had little influence on decisions. Modeling using patient preference weights predicts that a substantial minority of patients favor an interventional treatment such as renal denervation over initiation or escalation of medications. Awareness of a patient's interest in device-based versus pharmaceutical strategies should inform the shared decision-making process for hypertension treatment.

Patient learning choices in an online health infomediary

ABSTRACT Health infomediaries are online interactive platforms where patients learn about diseases, procedures, and treatments, but how the learning dynamics evolve to help patients make decisions is unknown. Investigating patient learning in health information is essential to enabling patient empowerment using these platforms. In this study, we theoretically anchor patients’ learning processes in a health infomediary to Nonaka-Takeuchi’s Socialization, Externalization, Combination, and Internalization (SECI) learning dynamics model, with the infomediary as the ba or collaborative space for learning. We posit that questions reflect externalization for a focal learning patient, while reviews and comments reflect socialization, driving patients’ knowledge internalization. Learning with more information aids patients in health-relevant choices and actions such as a doctor consultation in a health infomediary. Three hypotheses about continued learning choices are presented and tested using data from 8,900 reconstructive surgery health infomediary users, using a multichoice mixed logit model with panel estimations. Findings show patients continue to review and comment more than questions to learn about trendy surgeries, which is counterintuitive to existing insights, whereas questions lead to learning sentiment-laden information. Exploratory analyses suggest that learning through reviews regarding post-procedural services may deter, but other learning modes motivate patients to consult a doctor. We discuss the theoretical contributions and implications for infomediary design and research.

Patient-Centered Care as an Optimal Solution for Enhancing the Quality of Healthcare Delivery

The measurement of patients' satisfaction with the quality of treatment hinges on the extent to which their intended expectations, objectives, and preferences are met through interactions with healthcare professionals, including nurses. The paradigm of patient-centered care is increasingly recognized as pivotal for delivering high- quality nursing services. Evolving health information, technological advancements, shifting perceptions of care, greater patient engagement, and heightened competition within healthcare drive the pursuit of enhanced care quality. Assessing patients' perspectives is integral to improving healthcare quality, ensuring that services effectively align with patients' needs. This paper explores factors influencing patient-centered care and delves into the concept's tenets and implications for nursing practice.

Analyzing the Relationship between Cultural Identity and Health Professional Perspectives

Having a systematicseize of cultural diversity is necessary for health professionals to present culturally competent treatment, enhance patient satisfaction and recover healthcare outcomes. To better recognize how cultural identity (CI) affects the attitudes, communication preferences and decision-making processes of health professionals, this research looks at how cultural competency is integrated into healthcare education and strategy.This study examines the influence of CI on the perspectives and practices of health professionals and its impact on patient care. People's behaviors and self-perceptions are greatly influenced by their concept of culture, which is defined by shared norms, language, and ethical principles. This research includes 281 health professionals from diverse contexts utilizing the Cultural Competence Assessment Questionnaire (CCAQ). Interpersonal relationships, professional development, communication skills, cultural sensitivity, competence and patient-centered care are all significantly correlated, according to the data. This finding suggests that for improved patient relationship and liberty of health, there should be specialized cultural competency training. Implications for practice: promote continued professional development about cultural sensitivity in health events, and conferences. This article also puts forward the use of CI as one method to guide and support the approach of health professionals and capture the attention of communications and cultural competencies to help develop patient results.

A Behavior-Based Model to Validate Electronic Systems Designed to Collect Patient-Reported Outcomes: Model Development and Application.

The merits of technology have been adopted in capturing patient-reported outcomes (PROs) by incorporating PROs into electronic systems. Following the development of an electronic system, evaluation of system performance is crucial to ensuring the collection of meaningful data. In contemporary PRO literature, electronic system validation is overlooked, and evidence on validation methods is lacking. This study aims to introduce a generalized concept to guide electronic patient-reported outcome (ePRO) providers in planning for system-specific validation methods. Since electronic systems are essentially products of software engineering endeavors, electronic systems used to collect PRO should be viewed from a computer science perspective with consideration to the health care environment. On this basis, a testing model was blueprinted and applied to a newly developed ePRO system designed for clinical use in pediatric dentistry (electronic Personal Assessment Questionnaire-Paediatric Dentistry) to investigate its thoroughness. A behavior-based model of ePRO system validation was developed based on the principles of user acceptance testing and patient-centered care. The model allows systematic inspection of system specifications and identification of technical errors through simulated positive and negative usage pathways in open and closed environments. The model was able to detect 15 positive errors with 1 unfavorable response when applied to electronic Personal Assessment Questionnaire-Paediatric Dentistry system testing. The application of the behavior-based model to a newly developed ePRO system showed a high ability for technical error detection in a systematic fashion. The proposed model will increase confidence in the validity of ePRO systems as data collection tools in future research and clinical practice.