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BACKGROUND: In Sub-Saharan Africa (SSA), there is a noticeable shift from infectious diseases to chronic non-communicable diseases (CNCDs) based on recent studies. However, other studies suggest that social support can significantly improve self-care, increase knowledge of disease symptoms, and ultimately increase overall well-being in patients with CNCDs. In this study, we investigated the influence of perceived social support on treatment adherence among adults living with CNCDs in the Ho Municipality. METHODS: This was a health facility-based cross-sectional study among 432 adults living with cancer, diabetes, chronic kidney disease (CKD), stroke, and hypertension in the Ho Municipality of the Volta Region, Ghana. We adopted the Multi-dimensional Scale of Perceived Social Support (MSPSS), Medication Adherence Rating Scale and independent items to collect data. Logistic regression models were used to analyze the data with STATA v17.0 at 95% Confidence Intervals with statistical significance set at p<0.05. RESULTS: Majority of the participants (62%) reported high levels of perceived social support. While friends were the main source of support (69.4%), significant others provided the least support (45.4%). Among the dimensions of treatment adherence, participants demonstrated the highest adherence to reviews/check-ups (98.8%), while medication adherence had the highest level of non-adherence (38%). We did not find a significant association between perceived social support and overall treatment adherence, except for individuals with low perceived social support from friends (aOR = 8.58, 95% CI = 4.21,17.52), who were more likely to exhibit high adherence to behavioural and lifestyle recommendations. CONCLUSION: While the majority of respondents reported high perceived social support, there was no significant link between social support and overall treatment adherence. However, individuals with low support from friends showed a notably increased adherence to behavioural and lifestyle recommendations. This underscores the nuanced impact of social support on specific aspects of adherence, highlighting the need for targeted interventions tailored to individual support networks.

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INTRODUCTION: This study investigated the effects of falls on self-rated health and anxiety symptoms and the moderating role of psychological resilience in Chinese older persons with chronic multimorbidity. METHODS: Data were taken from the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS). We used a linear regression model to evaluate the associations among falls and self-rated health and anxiety symptoms, the moderating role of psychological resilience was verified by moderation analysis, and we also used a replacement model to test robustness. Finally, the results of the study were further verified via heterogeneity analysis through subgroup regression. RESULTS: A total of 2933 people aged 60 years or older with chronic multimorbidity were included in our study. The linear regression results revealed that falls were significantly negatively correlated with the self-rated health symptoms of older Chinese people with chronic multimorbidity (ß = -0.1703, p < 0.01) and significantly positively correlated with anxiety symptoms (ß = 0.5590, p < 0.01). Among the moderating effects, we found that psychological resilience played a moderating role between falls and anxiety symptoms (ß = - 0.151 [-0.217, -0.084], p < 0.01). Finally, we found heterogeneity in the study results by sex, residence and number of chronic diseases. CONCLUSION: Falls are associated with poorer self-rated health and higher anxiety levels among older persons with chronic multimorbidity in China. High levels of psychological resilience have a moderating effect on the development of anxiety symptoms.

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BACKGROUND: Empathy is a fundamental element of the physician-patient relationship for treatment and therapeutic adherence that has had to face significant changes due to the migrations of the health system in Chile. AIM: Characterize the empathetic physicians according to the perceptions of chronic patients during the encounter with national and foreign doctors in the public health system in the Maule Region. METHODS: Qualitative study of exploratory-descriptive type. Twenty chronic patients from public health services in the Maule region were interviewed remotely using the free listing technique. A thematic processual qualitative analysis of the content and a descriptive quantitative analysis were carried out where the frequency and salience of the Smith index assisted by the Anthropac 4.98 software were obtained. RESULTS: Seven categories of empathetic care were identified in the physicians-patient relationship: Affectivity (37%), Communication (19%), Attention (13%), Respect (12%), Research (9%), Knowledge (5%) and Efficiency (5%). CONCLUSIONS: The affective and psychoemotional aspects were more valued than the cognitive aspects of empathetic care. No differences were observed in assessing the empathetic care of patients seen by Chilean physicians and those treated by foreign physicians.

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BACKGROUND: The Patient Assessment of Chronic Illness Care (PACIC-5As) questionnaire has been designed to evaluate the healthcare experiences of individuals with chronic diseases such as diabetes. Older adults are at higher risk for diabetes and its associated complications. The aim of this study was transcultural adaptation and evaluation of the validity and reliability of the PACIC-5As questionnaire in older patients with diabetes residing in Qazvin City, Iran. METHOD: In this validation study, we recruited 306 older patients with diabetes from Comprehensive Health Centers in Qazvin, Iran. The multi-stage cluster sampling technique was used to choose a representative sample. The PACIC-5As questionnaire was translated into Persian using the World Health Organization (WHO) standardized method. The validity (face, content, and construct) and reliability (Cronbach's alpha) of the PACIC-5As were assessed. Data analysis was conducted using R software and the Lavaan package. RESULTS: The mean age of the older patients was 69.99 ± 6.94 years old. Most older participants were female (n = 180, 58.82%) and married (n = 216, 70.59%). Regarding face validity, all items of PACIC-5As had impact scores greater than 1.5. In terms of content validity, all items had a content validity ratio > 0.49 and a content validity index > 0.79. The results of confirmatory factor analysis demonstrated that the model exhibited satisfactory fit across the expected five factors, including assess, advise, agree, assist, and arrange, for the 25 items of the PACIC-5As questionnaire. The Cronbach's alpha coefficient for the PACIC-5As questionnaire was 0.805. CONCLUSION: This study indicates that the Persian version of the PACIC-5As questionnaire is valid and reliable for assessing healthcare experiences in older patients with diabetes. This means that the questionnaire can be effectively used in this population.

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PURPOSE OF REVIEW: To highlight the emerging crisis of critically ill elderly patients and review the unique burden of multidimensional morbidity faced by these patients and caregivers and potential interventions. RECENT FINDINGS: Physical, psychological, and cognitive sequelae after critical illness are frequent, durable, and robust across the international ICU outcome literature. Elderly patients are more vulnerable to the multisystem sequelae of critical illness and its treatment and the resultant multidimensional morbidity may be profound, chronic, and significantly affect functional independence, transition to the community, and quality of life for patients and families. Recent data reinforce the importance of baseline functional status, health trajectory, and chronic illness as key determinants of long-term functional disability after ICU. These risks are even more pronounced in older patients. SUMMARY: The current article is an overview of the outcomes of older survivors of critical illness, putative interventions to mitigate the long-term morbidity of patients, and the consequences for families and caregivers. A multimodal longitudinal approach designed to follow patients for one or more years may foster a better understanding of multidimensional morbidity faced by vulnerable older patients and families and provides a detailed understanding of recovery trajectories in this unique population to optimize outcome, goals of care directives, and ongoing informed consent to ICU treatment.

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BACKGROUND: Qualitative studies have examined the experiences of subjective cognitive dysfunction in specific populations or specific disease stages, but there has not yet been a systematic synthesis and evaluation of findings related to perceptions of subjective cognitive dysfunction in nondementia-related chronic illnesses. OBJECTIVE: The aim of this study was 2-fold: (1) to undertake a systematic review of experiences of subjective cognitive dysfunction in people with nondementia-related chronic disease and (2) to develop an explanatory framework to describe the experiences of living with subjective cognitive dysfunction. METHODS: Four databases were systematically searched for studies on subjective cognitive dysfunction up to June 2023. Qualitative synthesis was conducted on the final sample (N = 25) using Sandelowski's adaptation of Nobilt and Hare's reciprocal transactional analysis method. Critical appraisal was completed using the Critical Appraisal Skills Programme checklist. RESULTS: Through constant comparison of key concepts, findings were organized within 4 interrelated themes that informed a conceptual explanatory model of adapting to living with subjective cognitive dysfunction: (1) symptoms, (2) health care, (3) perceptions of self, and (4) relationships. Participants highlighted how subjective cognitive dysfunction affected interactions in health care settings and involved other symptoms that in turn complicated meaning, self-enhancement, and mastery. CONCLUSIONS: Our model of the process of adapting provides a new way to conceptualize cognitive dysfunction in chronic illness and suggests opportunities for health care professionals to support patients and their families. The results highlight the need for more research to better understand the role of subjective cognitive dysfunction in nondementia-related chronic illnesses.The review protocol was registered in PROSPERO (CRD42021231410).

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BACKGROUND: Chronic diseases, such as heart disease, cancer, and diabetes, are the leading causes of death and disability. Loneliness is linked to a greater risk of chronic disease. However, the lack of loneliness may change this relationship. METHODS: The 4th Survey of the Aged Population in Urban and Rural China (SSAPUR) was performed. 222,179 people over 60 years old were recruited. Chronic disease was defined by self-reported tumble incidents using the fourth SSAPUR questionnaire. We found that the residuals were well normally distributed. Subsequently, we analyzed the association between each studied factor and chronic disease by univariate logistic regression analysis. Finally, we stratified the population by age, gender, and urban and rural. RESULTS: 77,448 individuals experienced loneliness, while 137,593 did not. Loneliness correlated significantly with urban-rural classification, age, and gender (P < 0.001). There was a significant association between chronic diseases and loneliness (P < 0.05). Compared to lonely individuals, those with low level of loneliness had a lower incidence of gastric diseases (OR = 0.752, 95% CI, 0.736-0.769, P < 0.001), osteoarthritis (OR = 0.685, 95% CI, 0.673-0.697, P < 0.001), chronic obstructive pulmonary disease (COPD) (OR = 0.678, 95% CI, 0.659-0.698, P < 0.001), asthma (OR = 0.608, 95% CI, 0.583-0.633, P < 0.001), malignant tumors (OR = 0.892, 95% CI, 0.822-0.968, P = 0.006), and reproductive system diseases (OR = 0.871, 95% CI, 0.826-0.918, P < 0.001). CONCLUSION: In summary, loneliness is an important risk factor in the occurrence and development of chronic diseases in the elderly in China, and it has adverse effects on hypertension, stomach disease, cataract or glaucoma, osteoarthrosis, chronic lung disease, asthma, malignant tumor, and reproductive system diseases.

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BACKGROUND: Quality of life (QoL) provides a comprehensive concept underpinning veterinary decision-making that encompasses factors beyond physical health. It becomes particularly pertinent when seeking responsible choices for chronically ill or old horses that emphasise their well-being and a good QoL over the extension of life. How different stakeholders use the concept of QoL is highly relevant when considering the complexity of these decisions in real-life situations. METHODS: Seven focus group discussions (N = 39) were conducted to gain insights into how stakeholders assess and use equine QoL in veterinary care decisions for chronically ill and/or old horses. The discussions included horse owners (n = 17), equine veterinarians (n = 7), veterinary officers (n = 6), farriers (n = 4), and horse caregivers (n = 5). The combination of deductive and inductive qualitative content analysis of the group discussions focused on identifying both similarities and differences in the views of these groups regarding QoL for old and/or chronically ill horses. RESULTS: Findings show agreement about two issues: the importance of the individuality of the horse for assessing QoL and the relevance of QoL in making decisions about veterinary interventions. We identified differences between the groups with respect to three issues: the time required to assess QoL, stakeholders' contributions to QoL assessments, and challenges resulting from those contributions. While owners and caregivers of horses emphasised their knowledge of a horse and the relevance of the time they spend with their horse, the veterinarians in the study focused on the differences between their own QoL assessments and those of horse owners. In response to challenges regarding QoL assessments and decision-making, stakeholders described different strategies such as drawing comparisons to human experiences. CONCLUSIONS: Differences between stakeholders regarding equine QoL assessments contribute to challenges when making decisions about the care of chronically ill or old horses. The results of this study suggest that individual and collaborative reflection about a horse's QoL should be encouraged, for example by developing practicable QoL assessment tools that support relevant stakeholders in this process.

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BACKGROUND: Digital serious games (SGs) have rapidly become a promising strategy for entertainment-based health education; however, developing SGs for children with chronic diseases remains a challenge. OBJECTIVE: In this study, we attempted to provide an updated scope of understanding of the development and evaluation of SG educational tools and develop a framework for SG education development to promote self-management activities and behavior change in children with chronic diseases. METHODS: This study consists of a knowledge base and an analytical base. This study followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. To build the knowledge base, 5 stages of research were developed, including refining the review question (stage 1), searching for studies (stage 2), selecting relevant studies (stage 3), charting the information (stage 4), and collating the results (stage 5). Eligible studies that developed SG prototypes and evaluated SG education for children with chronic diseases were searched for in PubMed, Embase, Google Scholar, and peer-reviewed journals. In the analytical base, the context-mechanism-output approach and game taxonomy were used to analyze relevant behavioral theories and essential game elements. Game taxonomy included social features, presentation, narrative and identity, rewards and punishment, and manipulation and control. A total of 2 researchers selected the domains for the included behavioral theories and game elements. The intended SG framework was finalized by assembling SG fragments. Those SG fragments were appropriately reintegrated to visualize a new SG framework. RESULTS: This scoping review summarized data from 16 randomized controlled trials that evaluated SG education for children with chronic diseases and 14 studies on SG frameworks. It showed that self-determination theory was the most commonly used behavioral theory (9/30, 30%). Game elements included feedback, visual and audio designs, characters, narratives, rewards, challenges, competitions, goals, levels, rules, and tasks. In total, 3 phases of a digital SG framework are proposed in this review: requirements (phase 1), design and development (phase 2), and evaluation (phase 3). A total of 6 steps are described: exploring SG requirements (step 1), identifying target users (step 2), designing an SG prototype (step 3), building the SG prototype (step 4), evaluating the SG prototype (step 5), and marketing and monitoring the use of the SG prototype (step 6). Safety recommendations to use digital SG-based education for children in the post-COVID-19 era were also made. CONCLUSIONS: This review summarizes the fundamental behavioral theories and game elements of the available literature to establish a new theory-driven step-by-step framework. It can support game designers, clinicians, and educators in designing, developing, and evaluating digital, SG-based educational tools to increase self-management activities and promote behavior change in children with chronic diseases.

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BACKGROUND: Technology has become an integral part of our everyday life, and its use to manage and study health is no exception. Romantic partners play a critical role in managing chronic health conditions as they tend to be a primary source of support. OBJECTIVE: This study tests the feasibility of using commercial wearables to monitor couples' unique way of communicating and supporting each other and documents the physiological correlates of interpersonal dynamics (ie, heart rate linkage). METHODS: We analyzed 617 audio recordings of 5-minute duration (384 with concurrent heart rate data) and 527 brief self-reports collected from 11 couples in which 1 partner had type II diabetes during the course of their typical daily lives. Audio data were coded by trained raters for social support. The extent to which heart rate fluctuations were linked among couples was quantified using cross-correlations. Random-intercept multilevel models explored whether cross-correlations might differ by social contexts and exchanges. RESULTS: Sixty percent of audio recordings captured speech between partners and partners reported personal contact with each other in 75% of self-reports. Based on the coding, social support was found in 6% of recordings, whereas at least 1 partner self-reported social support about half the time (53%). Couples, on average, showed small to moderate interconnections in their heart rate fluctuations (r=0.04-0.22). Couples also varied in the extent to which there was lagged linkage, that is, meaning that changes in one partner's heart rate tended to precede changes in the other partner's heart rate. Exploratory analyses showed that heart rate linkage was stronger (1) in rater-coded partner conversations (vs moments of no rater-coded partner conversations: rdiff=0.13; P=.03), (2) when partners self-reported interpersonal contact (vs moments of no self-reported interpersonal contact: rdiff=0.20; P<.001), and (3) when partners self-reported social support exchanges (vs moments of no self-reported social support exchange: rdiff=0.15; P=.004). CONCLUSIONS: Our study provides initial evidence for the utility of using wearables to collect biopsychosocial data in couples managing a chronic health condition in daily life. Specifically, heart rate linkage might play a role in fostering chronic disease management as a couple. Insights from collecting such data could inform future technology interventions to promote healthy lifestyle engagement and adaptive chronic disease management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/13685.

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BACKGROUND: The Dixon-Woods et al. Candidacy Framework, a valuable tool since its 2006 introduction, has been widely utilized to analyze access to various services in diverse contexts, including healthcare. This social constructionist approach examines micro, meso, and macro influences on access, offering concrete explanations for access challenges rooted in socially patterned influences. This study employed the Candidacy Framework to explore the experiences of individuals living with rheumatoid arthritis (RA) and their formal care providers. The investigation extended to assessing supports and innovations in RA diagnosis and management, particularly in primary care. METHODS: This systematic review is a Critical Interpretive Synthesis (CIS) of qualitative and mixed methods literature. The CIS aimed to generate theory from identified constructs across the reviewed literature. The study found alignment between the seven dimensions of the Candidacy Framework and key themes emerging from the data. Notably absent from the framework was an eighth dimension, identified as the "embodied relational self." This dimension, central to the model, prompted the proposal of a revised framework specific to healthcare for chronic conditions. RESULTS: The CIS revealed that the eight dimensions, including the embodied relational self, provided a comprehensive understanding of the experiences and perspectives of individuals with RA and their care providers. The proposed Candidacy 2.0 (Chronic Condition (CC)) model demonstrated how integrating approaches like Intersectionality, concordance, and recursivity enhanced the framework when the embodied self was central. CONCLUSIONS: The study concludes that while the original Candidacy Framework serves as a robust foundation, a revised version, Candidacy 2.0 (CC), is warranted for chronic conditions. The addition of the embodied relational self dimension enriches the model, accommodating the complexities of accessing healthcare for chronic conditions. TRIAL REGISTRATION: This study did not involve a health care intervention on human participants, and as such, trial registration is not applicable. However, our review is registered with the Open Science Framework at https://doi.org/10.17605/OSF.IO/ASX5C .

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BACKGROUND: The growing aging trend associated with a higher prevalence of chronic illnesses is increasing the demand for the development of person-centered practice in specific care settings. Knowing the person's perception of the care and the care experience is essential to improving inpatient care toward person-centeredness. This study aims to characterize the perceptions of person-centered practice of hospitalized older adults with chronic illness at a Portuguese inpatient hospital department. METHODS: A quantitative, descriptive, cross-sectional approach was followed. Data were collected using a sociodemographic and health history questionnaire and the Person-Centered Practice Inventory - Care (PCPI-C). The effect of the different variables on each PCPI-C construct was determined using analysis of variance (ANOVA). RESULTS: The results show that person-centered practice was positively perceived in the five constructs of the person-centered processes domain (M = 3.92; SD = 0.47). The highest-scored construct was working with the person's beliefs and values (M = 4.12; SD = 0.51), and the lowest was working holistically (M = 3.68; SD = 0.70). No significant effect of the independent variables was found to influence the perceptions of any of the constructs in the person-centered processes domain. CONCLUSIONS: These results might indicate that person-centered processes are perceived uniquely by each person through individualized therapeutic relationships rather than a pattern of care shared by hospitalized older adults.

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BACKGROUND: Social support is widely recognized as a protective factor against psychological distress, especially for the elderly with chronic diseases. Therefore, effective tools for measuring social support are of great significance for both research and clinical practice. This study aims to cross-culturally adapt the German Social Support Scale (F-SozU) into Chinese and assess its psychometric properties among older adults with chronic diseases. METHODS: A cross-sectional study was conducted in a Chinese tertiary hospital. Four hundred ninety-six older adults that were approached via a convenience sampling method completed the Chinese version of the F-SozU. Content validity was evaluated using the two-round Delphi method. Psychometric properties, including item analysis, content validity, structure validity, convergent and discriminant validity and reliability were examined. RESULT: The final version of C-F-SozU is a three-factor structure consisting of 23 items. All indicators of item analysis are acceptable. Adequate content validity was ensured by the expert panel (I-CVI = 0.80-1.00, S-CVI = 0.965) and participants. The confirmatory factor analysis model revealed that the factor structure of the C-F-SozU fitted the original scale (χ 2 /df = 2.088, CFI = 0.998, GFI = 0.943, TLI = 0.997, IFI = 0.998, RMSEA = 0.064 and SRMR = 0.043). The total Cronbach's α was 0.956, and the test-retest reliability coefficient was 0.887. The convergent validity (average variance extracted = 0.517-0.995) and discriminant validity were found to be satisfactory. No floor/ceiling effect was found. CONCLUSION: The 23-item C-F-SozU demonstrates robust reliability and validity, rendering it a valuable instrument for evaluating social support among older adults with chronic diseases in China. The three-factor structure of the scale allows for a more detailed assessment of the social support, with the scores of each dimension and the total score being of significant reference value. More comprehensive studies may be required to confirm its effectiveness and applicability.

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PURPOSE: This study compared COVID-19 vaccination intentions in those with and without chronic diseases (CDs and non-CDs) in South Korea. We hypothesized that the factors associated with COVID-19 vaccination intentions would differ between CDs and non-CDs in South Korea. METHODS: Using survey data collected through a Korean online panel in June 2021, we conducted a cross-sectional secondary data analysis. Of the 2292 participants, 411 had at least one chronic disease. To construct a comparable dataset, we selected non-CDs via a 1:1 case-control matching for age and gender. We then utilized a multivariable binary logistic regression model to explore the factors contributing to COVID-19 vaccination intentions in CDs and non-CDs. RESULTS: All told, over 75% of participants in both groups indicated that they intended to vaccinate against COVID-19. In both groups, those who mistrusted general vaccine benefits reported significantly lower COVID-19 vaccination intentions. Regarding factors associated with vaccination intentions, CDs identified anxiety regarding coronavirus and exposure to COVID-19 vaccination promotions at the community level, while non-CDs highlighted hesitancy regarding vaccines and confidence in government/health services. CONCLUSION: Improving vaccination acceptance will require the development and implementation of tailored approaches for CDs and non-CDs and efforts to minimize general vaccine mistrust.

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For assessing health-related quality of life in patients with chronic wounds, the Wound-QoL questionnaire has been developed. Two different versions exist: the Wound-QoL-17 and the Wound-QoL-14. For international and cross-cultural comparisons, it is necessary to demonstrate psychometric properties in an international study. Therefore, the aim of this study was to test both questionnaires in a European sample, using item response theory (IRT). Participants were recruited in eight European countries. Item characteristic curves (ICC), item information curves (IIC) and differential item functioning (DIF) were calculated. In both questionnaires, ICCs for most items were well-ordered and sufficiently distinct. For items, in which adjacent response categories were not sufficiently distinct, response options were merged. IICs showed that items on sleep and on pain, on worries as well as on day-to-day and leisure activities had considerably high informational value. In the Wound-QoL-14, the item on social activities showed DIFs regarding the country and age. The same applied for the Wound-QoL-17, in which also the item on stairs showed DIFs regarding age. Our study showed comparable results across both versions of the Wound-QoL. We established a new scoring method, which could be applied in international research projects. For clinical practice, the original scoring can be maintained.

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PURPOSE: This study proposed and evaluated a theoretical model for exploring the relationships between neurocognition, self-defeatist beliefs, experiential negative symptoms, and social functioning in individuals with chronic schizophrenia. METHOD: The study recruited 229 individuals given a diagnosis of schizophrenia and schizoaffective disorders from outpatient clinics and the day ward of a mental health hospital. After informed consent was obtained, the participants underwent assessments using the backward digit span, the digit symbol, and measures of self-defeatist beliefs, experiential negative symptoms, and social functioning. A structural equation model was applied to assess the fitness of the hypothesized model, with indices such as the goodness-of-fit index, comparative fit index, root mean square error of approximation, and standardized root mean square residual being used for model evaluation. RESULTS: The hypothesized model had an adequate fit. The study findings indicated that neurocognition might indirectly influence self-defeatist beliefs through its effect on experiential negative symptoms. Contrary to expectations, the study did not observe a direct influence of neurocognition, self-defeatist beliefs, or negative symptoms on social functioning. The revised model revealed the role of experiential negative symptoms in mediating the association between neurocognition and social functioning. However, self-defeatist beliefs did not significantly affect social functioning. DISCUSSION: Before modifying negative thoughts, enhancement of self-awareness ability can help improve negative symptoms and thereby improve the performance of social functions. Future research should develop a hierarchical program of negative symptoms, from cognition rehabilitation to enhancement of self-awareness, and end with modifying maladaptive beliefs.

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BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. RESULTS: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

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Patient journey mapping, a novel method to visualize all the interactions a patient might have with the health system, is increasingly being adopted by the healthcare industry to identify challenges patients face, with the goal of improving health outcomes. However, patient journey maps are often used internally within pharma companies and are not published widely. Here, I conducted in-depth interviews with eight Indian patients/caregivers dealing with chronic and/or serious conditions; seven of the interviewees were living in India and spoke entirely from the perspective of the Indian health system, whereas one spoke from his experience of living in India, Ireland, and the UK. Using insights from these interviews, drawing on my own experience as a patient living with a rare disease and multiple comorbidities, and seeking feedback from several international patient advocates and industry professionals, I constructed a detailed map visualizing the collective journey of patients with serious/chronic conditions. Apart from showing the different stages in the patient journey, the map visualizes the associated stress levels, pain points (issues leading to a negative experience), emotions, and information-seeking behavior. One key insight that emerges is that along with a range of highly variable emotions patients experience, stress is a consistent factor throughout the patient journey. In many cases, the stress is caused or exacerbated by factors that can be avoided, such as long wait times, procedural hassles, inadequate or inaccurate information, and lack of empathy in interactions with healthcare professionals. The frustrations patients experience stem from a mix of underlying practical/tangible and emotional/aspirational needs. I have discussed these needs at length and provided suggestions for changes that could be implemented in the health system to meet these needs better. While my analysis presented here is generally framed from the context of the Indian health system, and some points discussed might have nuances in other health systems, the themes and insights provided are relevant to all patients and their journey, anywhere in the world. Pharmaceutical industry professionals, healthcare providers, and policymakers may benefit from these insights and may apply them to make strategic decisions and changes in their approach, with the goal of improving patient experience and health outcomes globally.

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Understanding how persons aging with a chronic condition view their health is essential for planning and delivering person-centered care. The purpose of this study was to explore how persons aging with the chronic and disabling condition multiple sclerosis (MS) describe their health and how this has changed over time using data from Years 1 to 26 of an ongoing longitudinal survey study of health promotion and quality of life for persons with MS. The survey included measures of perceived meaning of health, self-rated health, health behaviors and quality of life outcomes. The sample included 168 persons with MS who returned the survey at Time 1 (1996) and again at Time 26 (2022). In 2022, participants had a mean age of 70.13 (SD = 8.19) and had been diagnosed with MS for an average of 34.47 years (SD = 6.27). Sixty percent of participants rated their overall health as good or excellent. Decreases in health self-ratings over time were not significant. Participants consistently agreed more strongly with items reflecting a wellness-oriented view of health than those reflecting a more clinical/biomedical model. At both time points, clinical definitions of health were negatively related and wellness definitions were positively related to reported frequency of health behaviors. Findings suggest that persons aging with the chronic condition of MS may be more responsive to health messages that emphasize function in daily living, carrying out normal responsibilities, and adjusting to changes in environment and demands. Patient or Public Contribution: Persons with MS provided study data, input on design, and construct measurement.

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