Healthcare Journey Research Articles

Development of a Digital Health Intervention to Support Patients on a Waitlist for Orthopedic Specialist Care: Co-Design Study.

The demand for orthopedic specialist consultations for patients with osteoarthritis in public hospitals is high and continues to grow. Lengthy waiting times are increasingly affecting patients from low socioeconomic and culturally and linguistically diverse backgrounds who are more likely to rely on public health care. This study aimed to co-design a digital health intervention for patients with OA who are waiting for an orthopedic specialist consultation at a public health service, which is located in local government areas (LGAs) of identified social and economic disadvantage. The stakeholders involved in the co-design process included the research team; end users (patients); clinicians; academic experts; senior hospital staff; and a research, design, and development agency. The iterative co-design process comprised several key phases, including the collation and refinement of evidence-based information by the research team, with assistance from academic experts. Structured interviews with 16 clinicians (female: n=10, 63%; male: n=6, 38%) and 11 end users (age: mean 64.3, SD 7.2 y; female: n=7, 64%; male: n=4, 36%) of 1-hour duration were completed to understand the requirements for the intervention. Weekly workshops were held with key stakeholders throughout development. A different cohort of 15 end users (age: mean 61.5, SD 9.7 y; female: n=12, 80%; male: n=3, 20%) examined the feasibility of the study during a 2-week testing period. The System Usability Scale was used as the primary measure of intervention feasibility. Overall, 7 content modules were developed and refined over several iterations. Key themes highlighted in the clinician and end user interviews were the diverse characteristics of patients, the hierarchical structure with which patients view health practitioners, the importance of delivering information in multiple formats (written, audio, and visual), and access to patient-centered information as early as possible in the health care journey. All content was translated into Vietnamese, the most widely spoken language following English in the local government areas included in this study. Patients with hip and knee osteoarthritis from culturally and linguistically diverse backgrounds tested the feasibility of the intervention. A mean System Usability Scale score of 82.7 (SD 16) was recorded for the intervention, placing its usability in the excellent category. Through the co-design process, we developed an evidence-based, holistic, and patient-centered digital health intervention. The intervention was specifically designed to be used by patients from diverse backgrounds, including those with low health, digital, and written literacy levels. The effectiveness of the intervention in improving the physical and mental health of patients will be determined by a high-quality randomized controlled trial.

Smart wearable devices for real-time health monitoring

Smartwatches have emerged as powerful tools for health monitoring in recent years. These wearable devices combine advanced technology with portability, enabling individuals to track various aspects of their health and well-being conveniently. Heart rate monitoring has several advantages. Many smartwatches are equipped with optical heart rate sensors that continuously monitor a user’s heart rate. This feature provides real-time data on heart rate variations, which can be crucial for identifying irregularities and assessing overall cardiovascular health. Activity tracking: Smartwatches often include accelerometers and gyroscopes that track physical activities such as steps taken, distance traveled, and calories burned. This information can aid in setting and achieving fitness goals. Sleep tracking:Some smartwatches offer sleep tracking features, recording sleep duration, quality, and patterns. These data help users understand their sleep habits and make improvements for better rest. Global positioning system (GPS) and location tracking: Integrated GPS allows users to track their outdoor activities accurately, including running and cycling. This feature not only measures performance but also enhances safety during workouts. Stress monitoring: Certain smartwatches include tools that measure stress levels through heart rate variability analysis. Users can learn to manage stress more effectively based on these data. Electrocardiogram (ECG) and blood pressure monitoring:High-end smartwatches may include ECG and blood pressure monitoring capabilities. These features are particularly useful for individuals with heart conditions or hypertension. Notifications and alerts: Smartwatches can deliver notifications and alerts related to health goals, reminders to move, medication schedules, and emergencies. This functionality enhances user engagement and timely interventions. BENEFITS OF SMARTWATCHES IN HEALTH MONITORINGUnlike periodic doctor visits, smartwatches enable continuous health monitoring. Users can track their vital signs and activities throughout the day, providing a more comprehensive picture of their health. Smartwatches empower individuals to take control of their health. Users can make informed decisions about their lifestyle, exercise, and diet by providing real-time data. Smartwatches equipped with ECG and heart rate monitoring can detect irregularities and abnormalities early on. This early detection can be lifesaving for individuals at risk of heart-related conditions. Activity tracking and goal-setting features motivate users to engage in physical activities and maintain a healthier lifestyle. Achieving fitness goals can lead to increased motivation and adherence to healthier habits. Health data collected by smartwatches can be used to tailor fitness and wellness plans to an individual’s specific needs. This personalized approach can lead to more effective health improvements. LIMITATIONS AND CONSIDERATIONSAccuracy: While smartwatches offer valuable health data, their accuracy may vary. Factors such as skin type,device placement, and motion can affect the precision of measurements. Battery life: Continuous health monitoring can drain a smartwatch’s battery quickly. Users may need to recharge their devices frequently, potentially limiting the monitoring duration. Privacy and data security: Storing sensitive health data on a smartwatch raise concerns about privacy and data security. Manufacturers must implement robust security measures to protect users’ information. User reliance: There is a risk of over-reliance on smartwatches for health information. Users should be encouraged to consult health-care professionals for a comprehensive health assessment. CONCLUSIONSmartwatches have become versatile tools for health monitoring, offering a range of features that empower users to track and improve their well-being. While they have numerous benefits, users should know their limitations and use them as complementary tools in their health-care journey. Manufacturers and health-care providers play a critical role in ensuring the accuracy and security of the health data collected by these devices.

OP90 Multiple Myeloma: Developing A Benchmark Patient Experience Index In Australia And New Zealand

IntroductionWithin Australia and New Zealand (ANZ) there is limited evidence regarding the experience and satisfaction across the healthcare system of people living with multiple myeloma (MM). We aimed to quantify the patient experience across the healthcare system to help identify potential areas of the healthcare pathway that could be targeted for improvement to maximize patient satisfaction.MethodsA 30- to 40-minute online survey was completed by adults in ANZ diagnosed with MM. Anchored best-worst scaling (ABWS) is a technique that takes advantage of an individual’s ability to reliably identify extremes (‘best’ and ‘worst’) in sets of items, eliciting discriminating rankings free of scale bias. This study implemented a novel anchoring process to rescale importance and satisfaction best-worst scores for factors across the MM healthcare pathway, which could be compared and combined to form a patient experience index (PEI). There were 15 factors or ‘moments that matter’ (MTM), each describing a different aspect of the patient journey, such as time to diagnosis, treatment logistics, and side effects. The MTM were derived from qualitative research with patients as well as a workshop with key opinion leaders. Additional survey questions were included to help identify potential ways to improve patient satisfaction.ResultsThe results were based on 62 patients with MM. The overall median PEI score was 63.1. The top three MTM that were most important to patients, but they were least satisfied with (calculated by combining the top four of each most important/least satisfied factor for each participant), were side effects of medication, effectiveness of medication, and medication access.ConclusionsThe findings from this research contribute to the understanding of patient experiences of treatment and care for MM. The results can inform healthcare decisions for prioritizing interventions that align with patient experiences. In the future, the study could be executed longitudinally to assess shifts in satisfaction within the MM healthcare journey, which would be especially worthwhile if new programs are implemented to improve patient satisfaction.

Seeking Comfort and Demanding Agency—An Autoethnographic Exploration of a Patient and Partner Experience

This article applies an autoethnographic approach to the journey a patient and their partner undertook as they negotiated a medical adverse event. The resultant cascade of conditions lasted almost 4 years and resulted in the eventual death of the patient. The narrative is told from the dual perspectives of both the patient and their partner, providing a valuable resource for the practice of patient and family-centered care. This article illuminates the patient's experience of comfort across a continuum of healthcare settings and how both the patient and their partner were able to enact agency despite challenging institutional barriers, to become partners in their healthcare journey.

Upholding te mana o te wā: Māori patients and their families' experiences of accessing care following an out-of-hospital cardiac event

ObjectiveThe purpose of this study was to explore the experiences of Māori patients and their families accessing care for an acute out-of-hospital cardiac event and to identify any barriers or enablers of timely access to care. DesignEleven interviews with patients and their families were conducted either face-to-face or using online conferencing. Interviews were audio-recorded and transcribed for thematic analysis using Kaupapa Māori methodology. ResultsData analysis identified three themes: (1) me and the event, (2) the people (3) upholding te mana ō te wā or self-determined heart wellbeing. Knowledge of symptoms and a desire to maintain personal dignity at the time of the event affected emergency medical service initiation. Participants described relationships with health professionals, the importance of good quality information, having family support, and drawing on cultural practices as vital for their health care journey. ConclusionSystemic barriers including racism, discrimination, and inadequate resourcing exist for Māori journeying to and through care following an out of hospital cardiac event. Improving the cultural safety of health professionals, better access to community defibrillation, and improving understanding of the life-long impacts a cardiac event has on patients and whānau is recommended.

Whakawhanaungatanga-Building trust and connections: A qualitative study indigenous Māori patients and whānau (extended family network) hospital experiences.

Investigated the experiences of Māori (the Indigenous peoples of Aotearoa, New Zealand) patients and whānau (extended family network) engaging with acute hospital inpatient services and their priorities for a Māori-centred model of relational care. A qualitative Māori-centred research design using a Thought Space Wānanga (learning through in-depth group discussion, deliberation and consideration) approach. Two wānanga were conducted between May 2022 and June 2022, with 13 Māori patients who had been acutely hospitalized within the past 12 months and their whānau members. The first wānanga utilized storytelling and journey mapping to collect data. The second wānanga refined the initial themes. Wānanga were audio-recorded and then inductively coded and developed into themes. Thirteen patients and whānau attended the first wānanga, while 10 patients and whānau participated in the second wānanga). Four themes were developed: (1) Whakawhanaungatanga (establishing connections and relationships), (2) Whakamana (uplifting the status and esteem of Māori), (3) Whakawhitiwhiti kōrero (the importance of communicating, discussing and deliberating) and (4) Kotahitanga (working together with purpose) all provide insights into the importance of effectively engaging and connecting with Māori patients and whānau when acutely hospitalized. The experiences and priorities of Māori patients and whānau affirm the international literature, suggesting that Indigenous relational concepts are critical to building relationships, connections and trust. Despite existing healthcare models for working with Indigenous peoples, their poor application contributes to sub-optimal healthcare experiences at all points of their healthcare journey. A relational mode of practice focused on engagement and forming connections better meets the needs of Indigenous peoples engaging with inpatient health services. Despite the existence of Indigenous models of care, Indigenous peoples consistently report a lack of engagement and connection when accessing inpatient health services. Without establishing relationships, applying models of care is challenging. What problem did the study address? Internationally, healthcare systems are consistently ill-equipped to deliver culturally safe care for Indigenous and marginalized peoples, evident in ongoing health inequities. Like other reports of Indigenous experiences of health services, Māori express dissatisfaction with care delivery in an acute inpatient setting. This study investigated Māori patients and whānau experiences engaging with acute hospital inpatient services and their priorities for a Māori-centred model of relational care. What were the main findings? Māori patients and whānau recounted negative experiences with healthcare professionals lacking effective relationships and trust. Satisfaction occurred when engagement with health care professionals resembled Indigenous cultural rituals of encounter that considered their holistic, collective and dynamic worldviews. Previous models of relational care, while helpful, are not Indigenous and so do not address their needs, such as engagement as a mode of practice (how) to achieve this. Where and on whom will the research have an impact? This research impacts Indigenous peoples' health outcomes, particularly Māori, and nurses and clinicians working and interacting within acute inpatient and other hospital settings. Indigenous research methods support co-constructing knowledge for translation into practical outcomes through transformational practices, policies and theory development. We used the Consolidated Criteria for Strengthening the Reporting of Health Research Involving Indigenous Peoples (CONSIDER) statement (see File S2-CONSIDER Checklist) and the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (see File S3-COREQ Checklist). Māori patients and their whānau interviewed about their experiences were involved in data interpretation.

The Next Frontier in Sarcoma Care: Digital Health, AI, and the Quest for Precision Medicine.

The landscape of sarcoma care is on the cusp of a transformative era, spurred by the convergence of digital health and artificial intelligence (AI). This perspectives article explores the multifaceted opportunities and challenges in leveraging these technologies for value-based, precision sarcoma care. We delineate the current state-of-the-art methodologies and technologies in sarcoma care and outline their practical implications for healthcare providers, administrators, and policymakers. The article also addresses the limitations of AI and digital health platforms, emphasizing the need for high-quality data and ethical considerations. We delineate the promise held by the synergy of digital health platforms and AI algorithms in enhancing data-driven decision-making, outcome analytics, and personalized treatment planning. The concept of a sarcoma digital twin serves as an illustrative paradigm for this integration, offering a comprehensive, patient-centric view of the healthcare journey. The paper concludes with proposals for future research aimed at advancing the field, including the need for randomized controlled trials or target trial emulations and studies focusing on ethical and economic aspects. While the road to this transformative care is laden with ethical, regulatory, and practical challenges, we believe that the potential benefits far outweigh the obstacles. We conclude with a call to action for multidisciplinary collaboration and systemic adoption of these technologies, underscoring the urgency to act now for the future betterment of sarcoma care and healthcare at large.

Access to health care for migrants in French Guiana in 2022: a qualitative study of health care system actors.

Access to health care is a major public health issue. The social determinants of health have a role in accessing health care and in meeting the health needs of populations. With 281 million international migrants around the world, population movements are another major issue. Migrants are particularly exposed to precariousness during their migratory journey and after their settlement. These vulnerabilities may have deleterious effects on their health status and on their social conditions. In French Guiana, 36% of the population is of foreign origin. The objective of this study is to explore the barriers and the facilitators to accessing health care for migrants in French Guiana in 2022, from the perspective of health care professionals, social workers and local NGO actors. This research is an exploratory qualitative study based on the experiential knowledge of health care professionals, social workers and local NGO actors in French Guiana. 25 semi-structured interviews were conducted with these professionals and actors between April and June 2022, using an interview guide to explore their practices, representations and beliefs of access to health care and accompaniment of migrants in their patient journey. The interviews were transcribed and analyzed using the thematic analysis method. A total of 25 health care professionals, social workers and local NGO actors were included in the study. Participants highlighted that migrants are exposed to many factors hindering their access to health care in French Guiana (administrative complexity, language barriers, financial barriers, mobility issues, etc.). With the situations of great precariousness and the inadequacies of the public authorities, associative support (social, health and legal accompaniment process provided by NGOs and associations) has an important role in providing close support to migrants. Moreover, health mediation supports migrants in their social and health care journey to lead them toward empowerment. Health mediators contribute to promote a better understanding between professionals and migrants. In French Guiana, associative support and health mediation promote access to health care and social accompaniment for migrants. This article highlights the issues surrounding access to health care, associative support and health mediation in the Guianese context, which is marked by significant socio-cultural diversity and precariousness. Considering the benefits of associative support and health mediation, as well as social inequalities in health, is essential for health care professionals, social workers, local NGO actors, associations, public health authorities and political decision-makers to initiate concrete and suitable actions in favor of access to health care and social support for migrants in French Guiana.

Exploring the healthcare needs and experiences of pregnant women with congenital heart disease: A qualitative study

ProblemLittle is known regarding the healthcare needs and experiences of pregnant women with congenital heart disease (CHD) during pregnancy. BackgroundCongenital heart diseases are the most common birth anomalies, and they embrace a wide range of defects ranging from mild to complex and life-threatening defects. Pregnancy carries many physiological and psychological changes that affect pregnant woman with CHD and need special attention and consideration. AimTo explore the healthcare needs and experiences of Jordanian women with CHD during pregnancy. MethodsA descriptive phenomenological design was used. Utilising purposive sampling, 15 participants were recruited. Data was collected using individualised semi-structured interviews. Interviews were recorded and transcribed verbatim. Data were analyzed using Colaizzi's method. FindingsThree themes were identified: a) A broad spectrum of health needs during pregnancy, b) not being cared for, c) and the healthcare journey: Challenges and recommendations. Findings revealed that pregnancy in women with CHD is associated with many challenges and needs, and the lived healthcare experiences are mostly negative. DiscussionThis study addresses the healthcare needs and experiences of pregnant women with CHD during pregnancy. Our findings shed light on healthcare needs explored hidden aspects of the experiences of this vulnerable population and gave them the chance to make their voices heard. ConclusionThe study concluded that pregnant women with CHD experience hardship associated with negative challenges and personal suffering. The findings highlight the importance of the basic values and the need for a holistic approach and effective teamwork to minimise suffering among pregnant women with CHD

Work-focused healthcare from the perspective of employees living with cardiovascular disease: a patient experience journey mapping study

BackgroundPeople living with cardiovascular diseases (CVD) often experience work participation problems. Good work-focused healthcare, defined as the received advice, treatment, and guidance focusing on work participation, can support the patient and work place. However, experiences with work-focused healthcare are generally not always positive which is a barrier for work participation. Therefore, the objective of this study is to gain insight into the work-focused healthcare journey from the perspective of patients with work participation problems due to CVD, to understand their experiences and needs, and to derive opportunities for improving work-focused healthcare service at a system level.MethodsSemi-structured interviews, preceded by preparatory assignments, were conducted with 17 patients who experience(d) work participation problems due to CVD. The patient experience journey map (PEJM) approach was used to visualize the patients’ work-focused healthcare journey, including experiences and needs over time and place, from which opportunities to improve work-focused healthcare from the patient’s perspective were derived.ResultsAn aggregated PEJM consisting of six phases was composed and graphically mapped. The first phase, working, represents a period in which CVD health problems and subsequent functional limitations occur. The next two phases, short- and long-term sick leave, represent a period of full sick leave. The last three phases, start-, partial-, and full vocational reintegration, focus on the process of return to work that takes place ranging from a few months up to several years after sick-listing. For each phase the touchpoints, timespan, stakeholders, activities, experiences and needs from the perspective of the patients were identified. Finally, for better work-focused healthcare nine opportunities for improvement were derived from the PEJM, e.g. emphasize the need for work adjustment prior to the medical intervention, provide more personalized advice on handling work limitations, and putting more compelling pressure on the employer to create suitable work positions for their employees.Discussion/conclusionThis paper contributes insights to provide a more patient-centered work-focused healthcare trajectory for patients employed in paid jobs when living with CVD. The PEJM provides an understanding of the patients’ perspectives throughout their work-focused healthcare journey and highlights opportunities for improvement towards a better suited and seamless patient journey, Although this research was conducted within the Dutch healthcare system, it can be assumed that the findings on integrated work-focused healthcare are largly transferable to other healthcare systems.

The Initial Journey of Patients with Metastatic Pancreatic Cancer (PaCTO Project): A Nationwide Survey among Portuguese Specialist Physicians

Introduction: We aimed to characterize the initial healthcare journey of metastatic pancreatic ductal adenocarcinoma (mPDAC) patients in Portugal, including healthcare provision and factors affecting therapeutic decisions, namely BRCA mutations testing. Methods: This is a descriptive cross-sectional, web-based survey using a convenience sampling approach. Portuguese oncologists and pathologists that routinely work with mPDAC patients from the different geographical regions and settings were invited to participate in the study via email (December 2020). Descriptive statistical analyses were performed, with categorical variables reported as absolute and relative frequencies, and continuous variables with non-normal distribution as median and interquartile range (IQR) (Stata v.15.0). Results: Seventy physicians participated in the study (43 oncologists, 27 pathologists). According to the responses, a median of 28 patients per center (IQR 12–70) was diagnosed with PDAC in the previous year; 22 of them referring (IQR 8–70) to mPDAC. The pointed median time from patients’ first hospital admission until disease diagnosis/staging is between 2 and 4 weeks. Endoscopic ultrasound with fine-needle biopsy is available in most hospitals (86%). Around 50% of physicians request BRCA testing; the assessment of additional biomarkers besides BRCA is requested by 40% of professionals. Half of them stated that BRCA testing should be requested earlier–upon histological diagnosis, especially because the median time for results is of 4.0 weeks (IQR 4–8). PARP inhibitors such as olaparib, when available, would be the therapy of choice for most oncologists (71%) if no disease’ progression occurs after 4 months. Treatments’ selection is usually grounded on clinical criteria (e.g., performance status, liver function). Around 45% of patients use FOLFIRINOX/mFOLFIRINOX as the first-line therapy. Gemcitabine + nab-paclitaxel is used by 35% of patients as the second-line therapy. Conclusions: Physicians in Portugal support the increasing role of patient-tailored treatments in mPDAC, whose selection should be grounded on tumoral subtyping and molecular profiling. Further efforts to develop multidisciplinary teams, standardized clinical practice, and optimize the implementation of new target therapies are needed.

Marketing and Public Policy Implications of Dobbs v. Jackson Women's Health Organization

In June 2022, the U.S. Supreme Court ruled that the U.S. Constitution does not grant a right to abortion and that the legality of abortion should be determined by the states ( Dobbs v. Jackson Women's Health Organization). The Dobbs ruling impacts female reproductive health care during the estimated 39 years that females can become pregnant. It also affects health care providers and the organizations in which they work, health insurers, pharmaceutical firms, social media platforms, and employers. Important marketing and policy concerns, including privacy, cross-border commerce, consumer vulnerability, and marketplace information flow, will require study as stakeholders respond to this environmental change. The authors develop a framework for the “typical” female reproductive health care journey to identify some of the most important areas of research for marketing and public policy academics and policy makers.

Applying Logic to the Healthcare Journey.

Cross-disciplinary approaches to remediate complex healthcare service delivery issues may have merit. This study aims to establish the potential benefits of applying service design and evaluative research concepts in healthcare. Specifically, this study aims to demonstrate how a Customer Journey Map and a Logic Model could be used in unison to identify and remedy service delivery gaps to reduce barriers to care. This study provides systems thinking approach to solving operational issues in healthcare.

Copy-Pasting in Patients' Electronic Medical Records (EMRs): Use Judiciously and With Caution.

An electronic medical record (EMR) is an electronic, comprehensive, and up-to-date compilation of a patient's medical history and information stored in a secure digital format. It provides real-time access to patient data, enabling healthcare providers to make informed decisions quickly and accurately. EMR systems streamline a patient's healthcare journey and enable shared care across the medical practice. By providing a comprehensive view of a patient's medical history, EMRs can be invaluable tools for physicians and healthcare providers, allowing them to collaborate more effectively and provide better care. Additionally, EMRs can help reduce paperwork, improve accuracy, and increase efficiency, ultimately leading to improved patient outcomes. The true potential of EMR systems can be realized when they are used in conjunction with evidence-based medicine methodologies, quality improvement initiatives, and team-based care. This combination of technologies and practices can revolutionize healthcare delivery, improving patient outcomes, greater efficiency, and cost savings. "Copy-pasting" is an essential feature of EMR systems, with physicians relying on it for up to 35.7% of their workflow. By leveraging the copy-pasting feature of their EMR system, physicians can ensure that their data capture is accurate and timely, leading to better patient care. Copy-pasting can be a valuable tool for physicians, saving time and allowing them to focus on practical clinical issues. However, it is essential to note that while most clinicians copy-paste, 25% of them believe it can lead to a high frequency of medical errors, with the potential for a significant number of errors being attributed to this practice. Therefore, physicians must exercise caution when copy-pasting and take the necessary steps to ensure accuracy and reduce the risk of errors. Copy-pasting can cause severe adverse patient events by introducing new inaccuracies, rapidly spreading inaccurate or outdated information, leading to discordant notes, and creating long notes that mask essential clinical information. Despite these risks, copy-pasting has become widely used in EMRs. Additionally, copy-pasting can reduce the time spent on documentation, allowing healthcare providers to focus more on patient care. Inappropriate copy-pasting can have serious consequences, such as compromising data integrity, endangering patient safety, increasing costs, and even leading to fraudulent malpractice claims. In conclusion, copy-pasting can be helpful for healthcare professionals, but it must be used cautiously. Proper education and safeguards should be implemented to ensure accuracy and up-to-date patient data. Additionally, healthcare professionals should be aware of the legal implications of copy-pasting, as it may be considered a form of medical malpractice. With the proper precautions, copy-pasting can be a safe and efficient way to save time and reduce errors in patient records.

Exploring Hearing Care Technology from Clinic to Capability.

Healthcare systems are traditionally a clinician-led and reactive structure that does not promote clients managing their health issues or concerns from an early stage. However, when clients are proactive in starting their healthcare earlier than later, they can achieve better outcomes and quality of life. Hearing healthcare and the rehabilitation journey currently fit into this reactive and traditional model of care. With the development of service delivery models evolving to offer services to the consumer online and where they are predominately getting their healthcare information from the internet and the advancement of digital applications and hearing devices beyond traditional hearing aid structures, we are seeing a change in how consumers engage in hearing care. Similarly, as the range of hearing devices evolves with increasingly blended and standard levels of technology across consumer earbuds/headphones and medical grade hearing aids, we are seeing a convergence of consumers engaging earlier and becoming increasingly aware of hearing health needs. This article will discuss how the channels, service, and technology are coming together to reform traditionally clinician-led healthcare models to an earlier consumer-led model and the benefits and limitations associated with it. Additionally, we look to explore advances in hearing technologies and services, and if these will or can contribute to a behavioral change in the hearing healthcare journey of consumers.

“They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia

Purpose The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care. Method The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA. Result Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes. Conclusion The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway.

Community pharmacies and the empowerment of self-care in the United States

BackgroundAs part of self-care, patients prevent diseases or conditions, maintain, or enhance their current health status, and address current health challenges. As a key member of the healthcare team, the role of the pharmacist in relation to self-care is important, given the ease of access to pharmacists in a variety of care settings. ObjectivesTo describe the structure and function of self-care within community pharmacies throughout the United States (U.S.). MethodsThe literature within the U.S. was reviewed related to self-care definitions and practice, the role and training of the pharmacist, and challenges and opportunities for pharmacists. ResultsWithin the U.S., self-care is broader than simply products found in the “over-the-counter” (OTC) section of pharmacies; it includes pharmacists involvement in disease prevention, evaluation and maintenance of current health status, and assistance in managing health challenges. There is growing recognition of the significance of pharmacists in aiding patients in self-care, due to publication of outcomes related to pharmacist-provided self-care support. Accreditation standards require student pharmacists to develop knowledge and competency related to the broadest definition of self-care; resources exist related to curricular content and student evaluation and assessment support. The evolving role of the pharmacist in relation to self-care has presented challenges in terms of recognition and renumeration for services and workload issues. Efforts are currently underway to address these challenges. ConclusionsSpiraling health care costs, poor health outcomes, and continued health disparities indicate a need to better support U.S. patients on their health care journey, which often begins with self-care. There is a plethora of opportunities for pharmacists to advocate for expanding roles related to self-care, including participation in national efforts to recognize the outcomes of pharmacists in self-care.

Growth Hormone Deficiency following Traumatic Brain Injury in Pediatric and Adolescent Patients: Presentation, Treatment, and Challenges of Transitioning from Pediatric to Adult Services.

Traumatic brain injury (TBI) is increasingly recognized, with an incidence of approximately 110 per 100,000 in pediatric populations and 618 per 100,000 in adolescent and adult populations. TBI often leads to cognitive, behavioral, and physical consequences, including endocrinopathies. Deficiencies in anterior pituitary hormones (e.g., adrenocorticotropic hormone, thyroid-stimulating hormone, gonadotropins, and growth hormone [GH]) can negatively impact health outcomes and quality of life post-TBI. This review focuses on GH deficiency (GHD), the most common post-TBI pituitary hormone deficiency. GHD is associated with abnormal body composition, lipid metabolism, bone mineral density, executive brain functions, behavior, and height outcomes in pediatric, adolescent, and transition-age patients. Despite its relatively frequent occurrence, post-TBI GHD has not been well studied in these patients; hence, diagnostic and treatment recommendations are limited. Here, we examine the occurrence and diagnosis of TBI, retrospectively analyze post-TBI hypopituitarism and GHD prevalence rates in pediatric and adolescent patients, and discuss appropriate GHD testing strategies and GH dosage recommendations for these patients. We place particular emphasis on the ways in which testing and dosage recommendations may change during the transition phase. We conclude with a review of the challenges faced by transition-age patients and how these may be addressed to improve access to adequate healthcare. Little information is currently available to help guide patients with TBI and GHD through the transition phase and there is a risk of interrupted care; therefore, a strength of this review is its emphasis on this critical period in a patient's healthcare journey.

Supporting older people following out of hours discharge from the Emergency Department: An integrative review of the literature.

For many older people the emergency department (ED) is an important but sometimes difficult step in their healthcare journey. They often attend the ED with co and multi morbidities. Discharge home at evenings and weekends when post-discharge support services are limited can result in a delay or failure to follow through on their discharge plan leading to adverse health outcomes and in some cases, readmission to ED. The aim of this integrative review was to identify and appraise the support available to older people following discharge from the ED out of hours (OOH). For this review, out of hours referred to those times after 17.30 until 08.00 a.m. on Mondays to Fridays, all hours on weekends and public holidays. Whittemore and Knafl's (Journal of Advanced Nursing, 2005;52:546), framework was used to guide all stages of the review process. Articles were retrieved following a rigorous search of published works using various databases, the grey literature and hand search of the reference lists of the studies included. In total 31 articles were included in the review. These comprised systematic reviews, randomised control studies, cohort studies and surveys. Main themes identified included processes that enable support, support provision by health and social care professionals and telephone follow-up. Results identified a significant dearth of out of hours discharge research and a strong recommendation for more concise and thorough research in this important area of care transition. Older person discharge home from the ED presents an associated risk as previous research has identified frequent readmission and periods of ill health and dependency. Out of hours discharge can be even more problematic when it may be difficult to arrange support services and ensure continuity of care. Further work in this area is required, taking cognisance of the findings and recommendations identified in this review.

Is rising pharma market a new burden? Introspecting the implications of India’s healthcare journey from public to a private good

PurposeThe paper demonstrates prejudicial effects of the rising private participation and the lacuna of state in ensuring the accessibility and affordability of healthcare.Design/methodology/approachSecondary data analysis from national and international databases is employed to demonstrate the low government spending and the alternate healthcare financing mechanisms in the country. The company reports of six Indian pharma companies are examined to map the profits and revenues, and also taking into account the sales growth and return on investment.FindingsThe paper observes the pharmaceutical sector, via its spiralling drug prices, is the primary contributor to the huge out-of-pocket expenses borne by households. The study findings indicate that there is an increased divergence between the out-of-pocket expenses of households and exorbitant profits of the private drug companies in the country over the years.Research limitations/implicationsAmidst debates on the importance of public health in the aftermath of the pandemic, the paper examines the rising hands of private sector in healthcare, and implores – who benefits? The authors study the implications via looking into the rise in the wealth of pharma giants; at the time of crisis when the lives of common citizens in the country were at stake.Originality/valueThe paper emphasises the repercussions of the higher markup of the pharma industry in raising the healthcare costs of households. The authors emphasise that the nonregulation of the pharma sector leads to high medical debts/poverty, in the wake of growing out-of-pocket expenditures of the citizens.