Patient-centered Interventions Research Articles

Home-based transitional cardiac telerehabilitation in older adults post coronary artery bypass grafting: A randomized controlled trial

This randomized controlled trial evaluated the effectiveness of a 12-week home-based transitional cardiac telerehabilitation (Hb-T-CTR) program on health-related quality-of-life and therapeutic self-care in older adults’ post-Coronary Artery Bypass Grafting (CABG). The intervention group (n = 57) underwent Hb-T-CTR, incorporating preoperative counseling, postoperative education, a culturally adapted video, home visits, and telephone counseling, while the control group (n = 61) received standard care. Using the Coronary Revascularization Outcome Questionnaire and the Sidani Doran Therapeutic Self-Care Measure, data were collected at three time points. Results showed significant improvements in overall scores for both health-related quality of life (t1=3.386, P = 0.001; t2=4.224, P < 0.001) and therapeutic self-care (t1=7.104, P < 0.001; t2=4.242, P < 0.001) in the intervention group compared to controls. This telehealth approach provides convenient and accessible rehabilitation services for older adults’ post-CABG and highlights the importance of integrating Hb-T-CTR into routine care for personalized rehabilitation. This study underscores the potential of telehealth tools in overcoming barriers and enhancing patient-centered interventions.

Identifying priority challenges of older adults with COPD: A multiphase intervention refinement study.

Identifying priority challenges of older adults with chronic obstructive pulmonary disease (COPD) is critical to designing interventions aimed at improving their well-being and independence. To prioritize challenges of older adults with COPD and those who care for them to guide refinement of a telephonic nurse coach intervention for patients with COPD and their family caregivers (EPIC: Empowering People to Independence in COPD). Multiphase study guided by Baltes Theory of Successful Aging and the 5Ms Framework: Phase 1: Nominal group technique (NGT), a structured process of prioritizing responses to a question through group consensus. Phase 2: Rapid qualitative analysis. Phase 3: Intervention mapping and refinement. Ambulatory, virtual. Older adults with COPD, family caregivers, clinic staff (nurses, respiratory therapists), clinicians (physicians, nurse practitioners), and health system leaders. NGT sessions were conducted by constituency group with 37 participants (n = 7 patients, n = 6 family caregivers, n = 8 clinic staff, n = 9 clinicians, n = 7 health system leaders) (Phase 1). Participants generated 92 statements across five themes (Phase 2): (1) "Barriers to care", (2) "Family caregiver needs", (3) "Functional status and mobility issues", (4) "Illness understanding", and (5) "COPD care complexities". Supplemental oxygen challenges emerged as a critical problem, and prioritized challenges differed by group. Patients and clinic staff prioritized "Functional status and mobility issues", family caregivers prioritized "Family caregiver needs", and clinicians and health system leaders prioritized "COPD care complexities". Intervention mapping (Phase 3) guided EPIC refinement focused on meeting patient priorities of independence and mobility but accounting for all priorities. Diverse constituency groups identified priority challenges for older adults with COPD. Functional status and mobility issues, particularly related to supplemental oxygen, emerged as patient prioritized challenges. Patient-centered interventions for older adults with COPD must account for their prioritized functional and supplemental oxygen needs and explore diverse constituent perspectives to facilitate intervention enrichment.

Facilitating return of actionable genetic research results from a biobank repository: participant uptake and utilization of digital interventions

Research participants report interest in receiving genetic research results. How best to return results remains unclear. In this randomized pilot study, we sought to assess the feasibility of returning actionable research results through a two-step process including a patient-centered digital intervention as compared to a genetic counselor (GC) in the Penn Medicine biobank. In Step 1, participants with an actionable result and procedural controls (no actionable result) were invited to digital pre-disclosure education and provided options for opting out of results. In Step 2, those with actionable results who had not opted out were randomized to receive results via a digital disclosure intervention or with a GC. Five participants (2%) opted out of results after Step 1. After both steps, 52/113 (46.0%) of eligible cases received results, 5 (4.4%) actively declined results, 34 (30.1%) passively declined and 22 (19.5%) could not be reached. Receiving results was associated with younger age (p<0.001), completing pre-disclosure education (p<0.001) and being in the GC arm (p=0.06). Being older, female, and of Black race were associated with being unable to reach. Older age and Black race were associated with passively declining. 47% of those who received results did not have personal or family history to suggest the mutation, and 55.1% completed clinical confirmation testing. The use of digital tools may be acceptable to participants and could reduce costs of returning results. Low uptake, disparities in uptake, and barriers to confirmation testing will be important to address to realize the benefit of returning actionable research results.

Patients with cancer and pre-existing severe mental disorder

Patients with cancer and pre-existing severe mental disorder, which include moderate to severe depression, bipolar disorder and schizophrenia, are known to have reduced life expectancy and are less likely to get recommended cancer treatment. Barriers at patient-, provider- and system level have been identified, e.g. lack of identification of psychiatric comorbidity, shortage of stabilising psychiatric symptoms and fragmentation of the healthcare system. Patient-centered, interdisciplinary and cross-sectorial healthcare interventions have shown a high potential to improve the cancer care, as argued in this review.

Preparing Children for Invasive MedicalCancer Treatment with "My Logbook": Preliminary Results of a Pilot Study.

Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).

Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study

Introduction/objective: We investigated (1) work status changes during COVID-19, (2) financial resource adequacy, (3) preferences for work requirements (e.g. remote, workplace, mixed) and (4) work requirements versus preferences, among people with systemic sclerosis. Methods: This was a cross-sectional study of participants in the Scleroderma Patient-centered Intervention Network COVID-19 Cohort, which enrolled participants from the ongoing Scleroderma Patient-centered Intervention Network Cohort and externally in April 2020. In August 2022, participants completed questions on work status, financial well-being using the Consumer Financial Protection Bureau Financial Well-Being Scale, work requirements and work requirement preferences. Results: A total of 298 participants with systemic sclerosis were included. Mean age was 58.6 years (SD = 11.4). There were 101 (34%) participants working at the start of the pandemic and still working in August 2022, 179 (60%) not working at the start of the pandemic and still not working, 10 (3%) who stopped working after April 2020 and 8 (3%) who started working. Mean financial well-being did not change from April 2020 to August 2022 (difference: 0.2 points; 95% confidence interval: −1.1 to 0.7). Working participants (N = 109) preferred flexible work requirements (N = 34, 31%) or working entirely remotely (N = 32, 29%), but most were required to work entirely at a workplace (N = 35, 32%) or combined workplace and remotely with a fixed schedule (N = 31, 28%). Conclusion: Work status and financial well-being did not change substantively among people with systemic sclerosis during the pandemic. Flexible work policies may support people with systemic sclerosis to work.

Patient experiences and desires for recovery after ankle fracture surgery

ObjectiveThis study investigates patients’ experiences of commencing weight-bearing after ankle fracture surgery and their recovery priorities to inform a new rehabilitation intervention. MethodsEmbedded within the Weight bearing in Ankle Fractures (WAX) trial, this qualitative study conducted semi-structured interviews with patients following ankle fracture surgery. The Behaviour Change Wheel (BCW) framework guided the interview questions to ensure comprehensive domain coverage. A purposive, maximum variation sampling strategy was used for participant selection. Data analysis employed a combined deductive and inductive approach. ResultsA total of 29 patients were interviewed, revealing five key themes: understanding the recovery journey, navigating the healthcare system, understanding personal physical capabilities, building confidence for weight-bearing, and resuming daily activities. Themes emphasised the variability in healthcare access, the impact of non-weight-bearing on independence, and the role of self-efficacy in recovery. ConclusionsThe study highlighted the diversity in patient experiences and recovery challenges post-ankle fracture surgery. Patients’ recovery was influenced by access to consistent healthcare advice, self-efficacy, and the physical and psychological impact of non-weight-bearing. The findings suggest a need for tailored, patient-centred rehabilitation interventions that consider individual recovery trajectories and promote self-management. These insights provide a foundational understanding for developing interventions that more effectively address patient priorities and barriers to recovery.

Multidisciplinary Teams in Musculoskeletal Infection – From a Pathologist’s Perspective

Multidisciplinary team (MDT) meetings have emerged as a promising approach for the treatment of cancer patients. These meetings involve a team of healthcare professionals from different disciplines working together to develop a holistic, patient-centered treatment. Although MDT meetings are well established in oncology, they play a minor role in other diseases. Recent evidence suggests that the implementation of MDT meetings can improve patient outcomes in musculoskeletal infections.The aim of this retrospective, observational study was to present the agenda of our multidisciplinary limb board including live microscopy with a special focus on the pathologist’s role. The descriptive analysis of the limb board included 66 cases receiving live microscopy at the meeting and a total of 124 histopathological findings and 181 stainings. We could elucidate that pathologists seem to play an important role especially in clarifying the correct diagnosis. In 80.3 % of the findings, the pathologist specified the clinical diagnosis of the requesting physician leading to a consensus-based treatment plan for each patient.The implementation of MDT meetings including live microscopy in patients with musculoskeletal infections holds potential benefits, such as improved communication, scientific collaboration, and raising clinicians' awareness and understanding of histopathology findings. However, potential challenges, such as organizational effort and technical prerequisites should be considered.

The association of outdoor temperature and self-reported Raynaud's phenomenon severity among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study

Raynaud's phenomenon is the earliest and most common systemic sclerosis manifestation. Episodes can be triggered by cold exposure and ambient temperature changes. Small studies have found that Raynaud's phenomenon outcomes were associated with season. We aimed to map the degree that differences in ambient temperature are associated with Raynaud's phenomenon outcomes across the temperature spectrum. People with Raynaud's phenomenon secondary to systemic sclerosis in the Scleroderma Patient-centered Intervention Network Cohort completed past-week Raynaud's phenomenon severity assessments (0-10 numerical rating scale) at enrolment and longitudinally at 3-month intervals. Mean daily temperature and feels like temperature, which incorporates wind chill and humidity, for the week before each assessment were extracted for each participant from a weather site close to the participant's recruiting centre via the Iowa Environmental Mesonet. We used linear mixed models with basis splines to flexibly model non-linear changes in Raynaud's phenomenon severity across the temperature spectrum. People with lived experience of systemic sclerosis contributed to the study design and interpretation. Between April 15, 2014 and Aug 1, 2023, we included data on 20 233 Raynaud's phenomenon severity assessments from 2243 participants. 1964 (88%) of 2243 participants were women, 279 (12%) were men, and 1813 (82%) were White. Mean age was 54·8 (SD 12·7) years. The maximum predicted Raynaud's phenomenon severity score was 6·8 points (95% CI 5·6-8·1), which occurred at -25°C. Severity scores decreased minimally from -15°C to 5°C (0·05-0·21 points per 5°C difference), then decreased in larger steps between 5°C and 25°C (0·37-0·54 points per 5°C difference). The minimum predicted score was at 25°C (2·6 points [95% CI 2·5-2·7]). Scores increased at temperatures above 25°C to 3·5 points (3·0-4·1) at 35°C and 5·6 points (4·5-6·8) at 40°C. Results were similar for feels like temperature. Raynaud's phenomenon severity is worst at very cold temperatures but also increases with very warm temperatures, presumably due to air conditioning. Clinical management and Raynaud's phenomenon intervention trial designs should consider temperature patterns. Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, the Canadian Institutes of Health Research, the Arthritis Society, the Lady Davis Institute for Medical Research of the Jewish General Hospital, the Jewish General Hospital Foundation, and McGill University.

Utility of laryngeal electromyography for establishing prognosis and individualized treatment after laryngeal neuropathies.

Laryngeal electromyography (LEMG) is a technique used to characterize neuropathic injuries to the recurrent laryngeal nerve (RLN) and superior laryngeal nerve (SLN). The RLN and SLN innervate the laryngeal muscles to produce vocal fold (VF) motion and elongation, respectively. VF motion deficiencies can affect voice, swallowing, and breathing, which can greatly affect a patient's quality of life. Neuropathy-related VF motion deficiencies most often result from surgical interventions to the skull base, neck, or chest likely due to the circuitous route of the RLN. LEMG is ideally conducted by an electromyographer and an otolaryngologist using a team-approach. LEMG is a powerful diagnostic tool to better characterize the extent of neuropathic injury and thus clarify the prognosis for VF motion recovery. This updated review discusses current techniques to improve the positive and negative predictive values of LEMG using laryngeal synkinesis and quantitative LEMG. Synkinesis can be diagnosed by comparing motor unit potential amplitude during vocalization and sniff maneuvers when recording within adductor muscles. Quantitative turns analysis can measure motor unit recruitment to avoid subjective descriptions of reduced depolarization during vocalization, and normal values are >400 turns/s. By integrating qualitative, quantitative, and synkinetic data, a robust prognosis can help clinicians determine if VF weakness will recover. Based on LEMG interpretation, patient-centered treatment can be developed to include watchful waiting, temporary VF augmentation, or definitive medialization procedures and laryngeal reinnervation.

Essential New Complexity-Based Themes for Patient-Centered Diagnosis and Treatment of Dementia and Predementia in Older People: Multimorbidity and Multilevel Phenomenology.

Dementia is a highly prevalent condition with devastating clinical and socioeconomic sequela. It is expected to triple in prevalence by 2050. No treatment is currently known to be effective. Symptomatic late-onset dementia and predementia (SLODP) affects 95% of patients with the syndrome. In contrast to trials of pharmacological prevention, no treatment is suggested to remediate or cure these symptomatic patients. SLODP but not young onset dementia is intensely associated with multimorbidity (MUM), including brain-perturbating conditions (BPCs). Recent studies showed that MUM/BPCs have a major role in the pathogenesis of SLODP. Fortunately, most MUM/BPCs are medically treatable, and thus, their treatment may modify and improve SLODP, relieving suffering and reducing its clinical and socioeconomic threats. Regrettably, the complex system features of SLODP impede the diagnosis and treatment of the potentially remediable conditions (PRCs) associated with them, mainly due to failure of pattern recognition and a flawed diagnostic workup. We suggest incorporating two SLODP-specific conceptual themes into the diagnostic workup: MUM/BPC and multilevel phenomenological themes. By doing so, we were able to improve the diagnostic accuracy of SLODP components and optimize detecting and favorably treating PRCs. These revolutionary concepts and their implications for remediability and other parameters are discussed in the paper.

Factors affecting patient retention to hypertension treatment in a North Indian State: A mixed-method study.

Hypertension is a global health challenge, especially in low-to-middle-income countries, where awareness and control are suboptimal. Despite available treatments, poor medication adherence hampers blood pressure control, leading to adverse outcomes and increased costs. In response, the GOI has initiated national action plans to address noncommunicable diseases, including hypertension. The study aimed to analyze patient retention rates in hypertension treatment across healthcare levels and understand providers' and patients' perspectives on control factors. Using a mixed-method concurrent design in a North Indian district, retrospective data collection covered hypertensive patients registered from January 2020 to July 2020, followed for a year (August 2020-July 2021). Quantitative data included socio-demographic characteristics and patient follow-up rates. Qualitative data comprised focus group discussions (FGD) and in-depth interviews (IDI) with healthcare providers (HCPs) and patients. Findings identified challenges in patient retention and medication adherence, notably among females and at higher-level healthcare facilities, leading to substantial loss of follow-up. Only 63% of hypertensive outpatients maintained controlled blood pressure in the past year. Male patients exhibited more consistent attendance than females. Despite sufficient HCP knowledge, patient retention was better at Health and Wellness Centers (HWCs) levels, while blood pressure control was poorer at higher facilities. Barriers such as medication side effects, pill burden, and limited healthcare access hindered hypertension control, highlighting the need for improved primary care services, including extended clinic hours and diagnostic facilities. Improving hypertension control requires addressing medication adherence and healthcare access barriers. Strengthening primary care services and implementing patient-centered interventions are crucial steps.

Maternal mental health as a major contributor to maternal mortality

Perinatal mental health conditions affect up to 20 % of pregnant or postpartum individuals, and nearly 15 % of pregnant individuals meet criteria for substance use disorder (SUD). All providers taking care of pregnant or postpartum individuals will encounter patients in these scenarios. Maternal Mortality Review Committees (MMRCs) have determined maternal mental health conditions, including SUD, to be the leading cause of preventable maternal death during pregnancy or in the first year postpartum. Lessons learned from MMRCs to prevent these deaths include the recommendation that screening and identification of mental health conditions need to be linked with evidence-based, patient-centered, and accessible treatments. Obstetricians and gynecologists, midwives, family medicine providers, and pediatricians, are in unique positions not only to screen and diagnose, but also to treat individuals with mental health concerns, including SUD, during pregnancy and postpartum.

Assessing adherence to treatment guidelines and complications among atrial fibrillation patients in the United Arab Emirates.

Atrial fibrillation (AF), a potential trigger for stroke development, is considered a modifiable condition that can halt complications, decrease mortality, and prevent morbidity. The CHA₂DS₂-VASc and HAS-BLED scores are categorized as risk assessment tools used to estimate the risk of thrombosis development and assess major bleeding among atrial fibrillation patients. Our study aims to assess the adherence to post-discharge treatment recommendations according to CHA₂DS₂-VASc score risk group and evaluate the impact of CHA₂DS₂-VASc score and HAS-BLED score risk categories on death, length of hospital stay, complications, and hospital readmission among United Arab Emirates (UAE) patients. This was a multicenter retrospective study conducted from November 2022 to April 2023 in the United Arab Emirates. Medical charts for AF patients were assessed for possible enrolment in the study. A total number of 400 patients were included with a mean age of 55 (±14.5) years. The majority were females (67.8%), and most had high CHA₂DS₂-VASc and HAS-BLED scores (60% and 57.3%, respectively). Our study showed that adherence to treatment recommendations upon discharge was 71.8%. The bivariate analysis showed that patients with a high CHA₂DS₂-VASc score had a significantly higher risk of death (p-value of 0.001), hospital readmission (p-value of 0.007), and complications (p-value of 0.044) vs. the low and moderate risk group with a p-value of <0.05. Furthermore, our findings showed that the risk of death (0.001), complications (0.057), and mean hospital stay (0.003) were significantly higher in the high HAS-BLED risk score compared to both the low- and moderate-risk categories. Hospital stay was significantly higher in CHA₂DS₂-VASc and HAS-BLED high-risk score categories compared to the low-risk score category with a p-value of <0.001. Our study concluded that the adherence to treatment guidelines in atrial fibrillation patients was high and showed that patients received the most effective and patient-centered treatment. In addition, our study concluded that the risk of complications and mortality was higher in high-risk category patients.

Metaverse adoption as a cornerstone for sustainable healthcare firms in the industry 5.0 epoch

PurposeThis research looks into the revolutionary potential of Industry 5.0, healthcare, sustainability and the metaverse, with a focus on the transformation of healthcare firms through cutting-edge technologies such as artificial intelligence (AI) and Internet of Things (IoT). The study emphasizes the significance of sustainability, human-machine collaboration and Industry 5.0 in the development of a technologically advanced, inclusive and immersive healthcare system.Design/methodology/approachThe study surveyed 354 medical professionals and used structural equation modeling (SEM) to investigate healthcare sustainability, Industry 5.0 and the metaverse, emphasizing the integration of modern technology while maintaining ethical issues.FindingsThe findings highlight Industry 5.0’s and the metaverse’s transformational potential in healthcare firms. The study finds that human centricity (HC) has only a minor direct impact on healthcare sustainability, whereas intelligent automation (IA) and innovation (INN) play important roles that are regulated by external factors.Practical implicationsUtilizing IA inside healthcare organizations can result in significant industrial advancements. However, these organizations must recognize the importance of moderating factors and attempt to find a balance between INN and thesev restraints.Originality/valueThis study makes a substantial contribution to the field by investigating the potential of Industry 5.0, healthcare, sustainability and the metaverse. It discusses how these advances can transform healthcare firms, with an emphasis on patient-centered treatment, environmental sustainability and data ethics. The study emphasizes the importance of having a thorough awareness of these trends and their implications for healthcare practices.

236 Post-Splenectomy Patients: Reaudit of Current Practice at Living Well Partnership PCN

Abstract Aim Post-splenectomy patients are at increased risk of sepsis and overwhelming post-splenectomy infection (OPSI). This reaudit aimed to look at a primary care network’s (PCN) compliance with established immunisation guidelines and antibiotic prophylaxis post-splenectomy. Method A retrospective study of 29 splenectomy or asplenia patients between 2018-2022 was conducted within a primary care network. Hospital and GP records were reviewed for antibiotic prescriptions (prophylactic and emergency), vaccination records, electronic splenectomy alert and admission for infection. Interventions included a 15-minute patient intervention GP consultation and correction of EMIS coding. Results The 2018 audit showed that a proportion of splenectomy patients were not appropriately prescribed antibiotics. There was lack of patient insight into their condition (asplenia v splenectomy). An active, patient-centred intervention was employed to improve rates of antibiotic prescribing, perform counselling on regular recommended vaccinations and ensure correct clinical coding for follow up. Compliance to audit criteria increased across all measures between the 3 PDSA cycles. Antibiotic prophylaxis prescription increased from 53% (2018) to 71% in 2022. Emergency antibiotic prescription increased from 6% (2018) to 39% in 2022. Influenza vaccination rates increased from 71% (2018) to 82% in 2022. Following the intervention consultation, 85% of patients had appropriate antibiotic prophylaxis prescription and 64% had appropriate emergency antibiotics prescribed. Conclusions Prescription for emergency and prophylactic antibiotics, and correct coding for annual and 5-year vaccinations were improved for this cohort of splenectomy and asplenia patients. Patients valued a structured consultation leading to improved understanding and self-management.

Strategies to improve adherence to inhaled therapies in asthma and COPD

Respiratory conditions such as asthma and chronic obstructive pulmonary disease are significant public health challenges. Despite effective treatments, the rising mortality rates indicate a need for improved approaches in the management of these conditions. Patient adherence, which is known to be a key factor in treatment success, has been identified as low in these patient populations. Strategies to improve adherence include patient-centred interventions targeting knowledge of the treatment of their condition, ensuring that the most appropriate inhaler device is prescribed for an individual patient, and that all patients are followed up as recommended. Ultimately, this aims to improve patient outcomes in respiratory care.

Advancing equity in breast cancer care: natural language processing for analysing treatment outcomes in under-represented populations

ObjectiveThe study aimed to develop natural language processing (NLP) algorithms to automate extracting patient-centred breast cancer treatment outcomes from clinical notes in electronic health records (EHRs), particularly for women from...

Palliative care considerations in frail older adults.

Frailty is a common geriatric syndrome characterized by a decline in physical and cognitive abilities and an increased vulnerability to stressors such as illnesses and injuries. As the global population is aging, the prevalence of frailty is growing. Frail older adults are at substantial risk of developing mobility and self-care difficulties, hospitalization, and death. Frailty is also associated with a high symptom burden and psychosocial stress, including malnutrition, pain, fatigue, weakness, cognitive loss, depression, falls, and sleep disorders, among others. The role of palliative care is gaining attention in medical literature because frailty is associated with increased morbidity and mortality. While there are no specific guidelines yet for when palliative care should be consulted in older patients with frailty, it has been proposed that palliative care should be considered in frail patients with continued functional decline, increased healthcare utilization, and uncontrolled symptoms. Palliative care can aid in communication with patients and families, establishing goals of care and treatment preferences, improving pain and symptom control, addressing psychosocial and spiritual needs, advance care planning, caregiver needs, and end-of-life care. Once frailty is identified, a comprehensive evaluation of the patient's physical, psychosocial, and spiritual aspects of care is essential for establishing a patient-centered treatment plan. This paper aims to guide clinicians in providing patient-centered care for older adults with frailty in the outpatient setting. Through a comprehensive literature review, we describe the leading models of frailty, frailty screening tools used in the clinical setting, and the assessment and management of palliative care needs in frail patients. We also describe emerging models of care focusing on palliative care for older adults with frailty and discuss issues related to access to palliative care for this population.

Evaluating patient-reported adherence and outcomes in specialty disease states: A dual-site initiative.

Patient-reported outcomes (PROs) are often used by clinicians to evaluate patient response to specialty medications used to treat multiple sclerosis (MS) and rheumatologic conditions. Identifying associations among PROs and patient characteristics could inform patient-centered treatment monitoring. To examine the association among patient characteristics and PROs, including patient-reported adherence (defined as no missed doses), medication tolerance, patient perceived effectiveness, and health care resource utilization (HCRU; defined as emergency department visits or hospitalizations), for patients prescribed specialty medications in 2 health system specialty pharmacies. A dual-center, retrospective review of monthly medication assessments completed by Vanderbilt Specialty Pharmacy and University of Illinois Hospital and Health Sciences System specialty pharmacy was conducted. Patients were included if they received at least 3 fills of a specialty medication from rheumatology or MS clinics from October 2019 to March 2022, excluding patients with more than a 30-day supply. Primary outcomes were the PROs of patient-reported adherence, medication tolerability, perceived effectiveness, and HCRU. For each of the 2 primary outcomes (adherence and tolerability), a mixed-effects logistic regression model was used to test for associations with age, sex, race, clinic, site, and the other PROs. A total of 61,926 assessments were completed from 3,677 patients (Site 1 = 3,346; 91.0% and Site 2 = 331; 9.0%). Patients were predominantly White (75.6%) and female (71.7%) with a median age of 50 years (IQR = 37-61). Assessments most frequently originated from rheumatology (76.0%). Nonadherence was reported 4.0% of the time, with the most common explanations being forgetfulness (33.1%) and medication being held because of a procedure or illness (29.5%). Most responses indicated perceived effectiveness as good/excellent (93.9%), with 98.5% of responses indicating no issues with tolerability. Patients who reported tolerability issues were 2.5 times more likely to report a missed dose (95% CI = 1.87-3.23, P < 0.001). An effectiveness rating of fair was associated with a 61% increase in the odds of a missed dose compared with a rating of good/excellent (95% CI = 1.33-1.94). Patients filling rheumatology or MS specialty medications within health system specialty pharmacies reported high rates of medication effectiveness and adherence and low rates of issues with tolerability and HCRU. Patients who report tolerability issues or lower perceived effectiveness may benefit from additional monitoring to prevent nonadherence.