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Background: The chronically ill as a group has on average lower probability of employment compared to the general population, a situation that has persisted over time in many countries. Previous studies have shown that the prevalence of chronic diseases is higher among those with lower levels of education. We aim to quantify the double burden of low education and chronic illness comparing the differential probabilities of employment between the chronically ill with lower, medium, and high levels of education and how their employment rates develop over time. Methods: Using merged Norwegian administrative data over a 11-year period (2008–2018), our estimations are based on multivariable regression with labour market and time fixed effects. To reduce bias due to patients' heterogeneity, we included a series of covariates that may influence the association between labour market participation and level of education. To explicitly explore the 'shielding effect' of education over time, the models include the interaction effects between chronic illness and level of education and year. Results: The employment probabilities are highest for the high educated and lowest for chronically ill individuals with lower education, as expected. The differences between educational groups are changing over time, though, driven by a revealing development among the lower-educated chronically ill. That group has a significant reduction in employment probabilities both in absolute terms and relative to the other groups. The mean predicted employment probabilities for the high educated chronic patient is not changing over time indicating that the high educated as a group is able to maintain labour market participation over time. Additionally, we find remarkable differences in employment probabilities depending on diagnoses. Conclusion: For the chronically ill as a group, a high level of education seems to "shield" against labour market consequences. The magnitude of the shielding effect is increasing over time leaving chronically ill individuals with lower education behind. However, the shielding effect varies in size between types of chronic diseases. While musculoskeletal, cardiovascular and partly cancer patients are "sorted" hierarchically according to level of education, diabetes, respiratory and mental patients are not. [ABSTRACT FROM AUTHOR]

Introduction: It is unclear whether the risk of suicide differs among individuals with only physical health condition, those with only mental health conditions, and those with both types of conditions (multimorbidity) and how emotional social support modifies these associations. This study aimed to examine differences in the association of suicidal ideation with the presence of only physical health conditions, only mental health conditions, and multimorbidity and the modifying role of emotional social support in these associations. Methods: A cross-sectional survey was conducted between August and September 2023 in a Japanese rural town to collect data. The exposure variable was the health condition, and it was classified into 4 groups: disease-free, only physical health conditions, only mental health conditions, and multimorbidity. The outcome variable was suicidal ideation. The data collected were analyzed using multivariate logistic regression analysis and stratified analysis. Results: Suicidal ideation was found to have a significant positive association with the presence of only mental health conditions and multimorbidity. These associations remained unchanged in the absence of emotional social support. However, the odds ratio for the only mental health conditions group decreased in the presence of emotional social support, while the odds ratio for the multimorbidity group remained significantly higher. Conclusions: Suicidal ideation is positively associated with the presence of only mental health conditions and multimorbidity, but emotional social support modifies only the association between suicidal ideation and the presence of only mental health conditions. These results suggest that it may be important to identify the type of social support one needs based on one's health condition to prevent suicide. [ABSTRACT FROM AUTHOR]

Background: In the world of elderly people and people with chronic diseases, caregivers give a solution to caring at home. This study aimed to evaluate the burden of caregivers of patients with chronic diseases in primary health care and identify possible demographic and other determinants of it. Methods: This was a cross-sectional study with a convenience sample, which was conducted in two health centers. The sample comprised 291 caregivers who visited the aforementioned health centers in Patra, Greece. A composite questionnaire was utilized: the first part included demographic data and care-related information and the second included the Zarit Burden Interview and the Depression, Anxiety, and Stress Scale-21 (DASS-21). Results: The highest mean score in the DASS was recorded in the depression subscale and the lowest in the stress subscale. Concerning the Zarit Burden Interview, the highest mean score was recorded in the personal strain subscale and the lowest in the management of care subscale. The highest correlation was recorded between role strain and anxiety and the lowest was between management of care and stress. Similarly, the total score in the Zarit Burden Interview correlated significantly (in a positive direction) with depression, anxiety, and stress. Conclusions: Most of the caregivers of patients with chronic diseases in primary health care experienced a moderate to severe burden (especially in the dimension of personal strain) and moderate depression. The experienced burden was positively associated with depression, anxiety, and stress. There were significant differences in the caregivers' burden according to several demographic and care-related characteristics. [ABSTRACT FROM AUTHOR]

Background/Objectives: The COVID-19 pandemic has profoundly affected the lives of adolescents worldwide, especially those living with chronic diseases. This study aims to explore the impact of the COVID-19 pandemic on the daily lives of adolescents with chronic diseases. Methods: This is a scoping review that follows the guidelines proposed by JBI. Eligibility criteria include articles focusing on adolescents aged 10 to 19 during the COVID-19 pandemic, regardless of chronic diseases. Searches were performed in PUBMED, LILACS, CINAHL, SCOPUS, grey literature, and manual searches in March 2024. Results: This review is composed of 35 articles. The analysis revealed two main categories: (1) Adolescents facing social isolation, school closure, and new family interactions, striving to reinvent themselves, and (2) Chasing the best decision: following up the chronic disease while fighting the COVID-19 pandemic. These categories encompass subcategories highlighting changes in social and family interactions and lifestyle habits. The findings suggest a multifaceted interaction of factors influencing adolescents' well-being, including improved family bonding, heightened disease management, and increased stress and strains on resources. Conclusions: This review emphasizes the importance of long-term follow-up and social inclusion efforts for adolescents with chronic diseases and their families, addressing their unique needs during public health crises. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The wounded healer concept refers to healthcare providers who, in the past, have had similar experiences to those of their clients and now draw on these challenging experiences to assist their clients. This study explored the positive traits of nurses with chronic cardiovascular diseases who transitioned to wounded healers. Methods: A qualitative content analysis study was conducted within hospitals in Tehran, Iran, between November 2023 and March 2024. Sampling was conducted using a purposive sampling method in accordance with the study objectives and inclusion criteria. The data were collected through semi-structured face-to-face interviews. Twenty-three participants, comprising 16 females and 7 males, participated in the interviews. Data analysis was conducted by employing a qualitative content analysis approach, including creating codes, subcategories, generic categories, and main categories. MAXQDA v20 software was utilized to facilitate the analysis process. Results: The data analysis revealed one main category that aligned with the research question: the positive traits of a wounded healer nurse, consisting of three generic categories: (1) traits related to interpersonal and professional relationships; (2) traits related to the professional dimension; and (3) traits related to the personal dimension. wounded healer nurses demonstrate positive traits that enhance patient care. Conclusions: The findings of this study have important implications for nursing practice and education. By identifying the positive traits exhibited by nurses as wounded healers affected by chronic cardiovascular diseases, nursing programs can emphasize and strengthen these qualities to convert challenges into opportunities and bridge the theory-practice gap. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long‐term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). Methods: Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. Results: The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self‐management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). Conclusions: It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. Patient or Public Contribution: The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation. [ABSTRACT FROM AUTHOR]

Background: Chronic disease (CD) accounts for more than half of the overall global disease burden and physical activity (PA) is an established evidence-based strategy for the prevention and management of CD. Global policy emphasises the value of embedding PA into primary healthcare, highlighting the positive effects on PA behaviour. However, there is limited implementation of PA protocols in primary care, and research is needed to guide its integration into routine practice. The voice of the patient is underrepresented in the literature, resulting in the absence of critical insights into determinants of PA promotion in primary care. The purpose of the research was to identify the perspectives of people at risk of or living with CD on the determinants of PA promotion in primary care and to map these determinants across the six COM-B constructs. Methods: Semi-structured interviews (n = 22), guided by the COM-B model were conducted with people aged 35–60 years, at risk of or living with CD and not meeting the PA guidelines. A hybrid analytic approach of thematic inductive and deductive analysis was applied to the participant transcripts guided by a COM-B informed coding framework. Results: In total, 37 determinants across constructs related to capability, opportunity and motivation were prominent, examples include; physical capability constraints, the conflation of exercise with weight management, credibility of the health services in PA advice, communication styles in PA promotion, expectations of tailored support for PA, social support, accessibility, and integration of PA into routine habits. Conclusion: Exploring the determinants of PA promotion through the lens of the COM-B model facilitated a systematic approach to understanding the primary care user perspective of the healthcare professional (HCP) broaching the topic of PA. Findings emphasise the value of HCPs being supported to broach the issue of PA in a therapeutic and patient-centred manner using diverse and flexible approaches, while highlighting the importance of tailored, accessible PA opportunities that build self-efficacy and foster social support. The research provides valuable learnings to support PA promotion and the development of strategies in primary care through encompassing the perspective of those living with or at risk of CD. [ABSTRACT FROM AUTHOR]

Background: Cancer threat is relevant to age, and the threat of a foreshortened life coupled with a lengthy treatment process negatively affects middle‐aged and older adults. Understanding the coping throughout the cancer experience in middle‐aged and older cancer survivors will help develop supportive care to promote their physiological and psychological coping effects. Objectives: To explore the cancer coping experiences of middle‐aged adults aged 40–59 and older adults over 60. Design: A descriptive phenomenological study was employed. Methods: Face‐to‐face, in‐depth, semistructured interviews were conducted with 22 oncology patients in a tertiary university hospital aged 40 or above from August to October 2023. The interview data were analyzed using thematic analysis procedures. Results: Five themes and 13 subthemes were formed through analysis: acceptance of cancer (considering cancer as chronic, believing in fate and attributing cancer to karma); having different information needs (desired to be truthfully informed, information‐seeking behaviour, information avoidance behaviour); getting families involved (developing dependent behaviours, feeling emotional support, family members suffering worse); striving to maintain positive psychological state (positive thinking, seeking peer support) and negative experience (undesirable, low self‐esteem). Conclusion: Our study reveals that cancer survivors' attitudes towards having cancer have changed from a death sentence to a more positive perception of a chronic disease. Supportive programmes for developing coping strategies should consider the cultural traditions and religious beliefs, different information needs, involvement of family and promoting a positive psychological state while avoiding negative factors. Patient or Public Contribution: Participants with experience of coping with cancer were involved in the semistructured interview. [ABSTRACT FROM AUTHOR]

AIM: The aim of this study was to determine the problems, perceived stress, and coping with the stress of mothers of children with chronic diseases during the pandemic. METHODS: The study was conducted with cross-sectional design. The data were gathered from the mothers of children with chronic diseases who were followed up at the endocrine outpatient clinic of a hospital in Istanbul between February 1, 2021, and May 31, 2021. The data were collected by conducting face-to-face interviews with mothers of 117 children through information form, Perceived Stress Scale (PSS), and the Coping with Stress Scale (CSS). RESULTS: It was determined that 35.9% of the mothers stated that they had problems during the pandemic since their children suffered from chronic diseases. The mean scores of the mothers were 26.88 ± 6.69 points for the PSS and 87.35 ± 11.04 points for the CSS and there was a negative and weak correlation between their scale scores (r=-.190; p < .05). CONCLUSION: It was found that families faced many different problems during the pandemic, such as the treatment and control of their children. In case of extraordinary situations such as pandemics, nurses should provide planned guidance and counseling services to children with chronic diseases and their families in order to manage the negative situations they experience. [ABSTRACT FROM AUTHOR]

Background: Extensive research has explored SLE's impact on health-related quality of life (H-QoL), especially its connection with mental wellbeing. Recent evidence indicates that depressive syndromes significantly affect H-QoL in SLE. This study aims to quantify SLE's impact on H-QoL, accounting for comorbid depressive episodes through case-control studies. Methods: A case-control study was conducted with SLE patients (meeting the ACR/EULAR 2019 criteria of age ≥ 18). The control group was chosen from a community database. H-QoL was measured with the SF-12 questionnaire, and PHQ-9 was used to assess depressive episodes. Results: SLE significantly worsened H-QoL with an attributable burden of 5.37 ± 4.46. When compared to other chronic diseases, only multiple sclerosis had a worse impact on H-QoL. Major depressive episodes had a significant impact on SLE patients' H-QoL, with an attributable burden of 9.43 ± 5.10, similar to its impact on solid cancers but greater than its impact on other diseases. Conclusions: SLE has a comparable impact on QoL to serious chronic disorders. Concomitant depressive episodes notably worsened SLE patients' QoL, exceeding other conditions, similar to solid tumors. This underscores the significance of addressing mood disorders in SLE patients. Given the influence of mood disorders on SLE outcomes, early identification and treatment are crucial. [ABSTRACT FROM AUTHOR]

The article focuses on chronic medical illnesses, discussing their operational definition as conditions requiring ongoing management over an extended period and encompassing various health issues, leading to the concept of multimorbidity. It mentions the prevalence of chronic conditions, especially among older adults, is highlighted, with estimates suggesting that a significant portion of the population suffers from one or more chronic conditions.

Background. The rising life expectancy and advancements in health care have led to an upsurge in chronic diseases, highlighting the emergence of significant societal and public health challenges. Objectives. We aimed to examine the effects of the health anxiety of individuals with chronic diseases on their adjustment to their chronic diseases. Material and methods. This study was designed as observational, descriptive and cross-sectional. The population of the study consisted of individuals who had a chronic disease and were treated in a family medicine outpatient clinic for any reason between February and March 2022. The sampling method was determined to be probabilistic and sequential, and a total of 107 individuals aged 18 years and older who volunteered to participate in the study with these characteristics were included in the study. Data was collected using a questionnaire that included descriptive characteristics of the patients and researcher-generated information about the disease, as well as the Chronic Disease Adjustment Scale and the Health Anxiety Scale. Results. A statistically significant inverse relationship was found between patients' scores on the Health Anxiety Scale and scores on the Chronic Disease Adjustment Scale and the psychological and social adjustment subscales. Conclusions. With the interventions to be made on patients' health anxiety, it will be possible to adapt the patients to their chronic diseases so that regular drug use and social well-being will be possible for the patients. [ABSTRACT FROM AUTHOR]

Objective: The TARGET program for integrated, person-centered care for people with chronic conditions offers primary care (PC) professionals a set of tools and trainings to actively engage in population segmentation and person-centered needs assessments (PCNAs). A pilot study was conducted to gain insight into the program's feasibility and acceptability, and identify preconditions for successful implementation. Design and setting: Seven Dutch PC practices participated in a half-year pilot study starting in August 2020. We performed a review of the population segmentation tool, observed four training sessions and 15 PCNAs, and interviewed 15 professionals and 12 patients. Results: Regarding feasibility and acceptability, we found that the tools and trainings provided professionals with skills to use the segmentation tool and take a more coaching role in the well-appreciated PCNAs. Concerning implementation preconditions, we found that team commitment and network connections need improvement, although work pleasure increased and professionals generally wanted the program to continue. Conclusions: While the content of the TARGET program is supported by its users, the implementation process, for instance team commitment to the program, needs more attention in future upscaling efforts. [ABSTRACT FROM AUTHOR]

Objective: Little is known about self-concept in adolescents with physical-mental comorbidity. This study investigated whether physical-mental comorbidity was associated with self-concept in adolescents and examined if adolescent age or sex moderated the association between physical-mental comorbidity and self-concept. Methods: Study data were obtained from the Multimorbidity in Youth across the Life-course (MY LIFE), an ongoing Canadian study of adolescents with chronic physical illness who were recruited from outpatient clinics at a pediatric hospital. A total of 116 adolescents aged ≥ 10 years provided self-reports on key measures. Results: Adolescents with comorbidity (n = 48) had lower self-concept scores on the Self-Determination Questionnaire (SDQ; d = 0.62) and Self-Perception Profile for Children (SPPC; d = 0.53) vs. adolescents without comorbidity (n = 68). An age × comorbidity status interaction was found and age-stratified models were computed to investigate this moderating effect of age. Amongst older adolescents, comorbidity was associated with lower SDQ (B = -2.55, p <.001), but this association was not found among younger adolescents (B = -0.29, p =.680). A similar effect was found for SPPC among older (B = -0.48, p =.001) and younger adolescents (B = 0.03, p =.842). Adolescent sex was not found to be a moderator. Conclusions: Physical-mental comorbidity in adolescence was associated with lower self-concept and this association was moderated by age—differences between adolescents with vs. without comorbidity were greater for older adolescents and were clinically relevant. Opportunities to support positive self-perceptions for adolescents with comorbidity are warranted, especially when planning the transition from pediatric to adult health services. [ABSTRACT FROM AUTHOR]

(1) Background: The elderly with chronic diseases often experience high levels of depression, which can negatively affect their family conflict coping strategies. Additionally, as the level of depression increases, self-esteem tends to decrease. This study aims to investigate whether self-esteem plays a moderating role in the relationship between depression and family conflict coping strategies among the elderly with chronic diseases. (2) Method: The subjects were 2501 older adults with chronic diseases included in the 16th Korean Welfare Panel Study. The CES-D scale, Rosenberg Self-Esteem Scale, and the tool of Family Conflict Coping Strategies were used. (3) Results: Depression was negatively correlated with self-esteem and coping strategies for family conflict, while self-esteem was positively correlated with coping strategies for family conflict. In the multiple regression model, self-esteem had a moderating effect (F = 43.20, p < 0.001). This result indicated that as self-esteem increases, the negative influence of depression on family conflict coping strategies becomes weaker (β = −0.08, t = −3.04, p = 0.002). (4) Conclusions: When addressing family conflict coping strategies in the elderly with chronic diseases, it is crucial to focus on enhancing self-esteem. Additionally, it may be beneficial to classify the elderly into groups based on their level of self-esteem. [ABSTRACT FROM AUTHOR]

Health-related quality of life (HRQoL) is a multidimensional patient-related outcome. Less is known about the role of depressive symptoms on HRQoL in chronic diseases. This follow-up study analyzed depressive symptoms' association with HRQoL change measured with 15D in patients with chronic diseases. A total of 587 patients from the Siilinjärvi Health Center, Finland were followed up due to the treatment of hypertension (HA), coronary artery disease (CAD) or diabetes (DM). Depressive symptoms were based on Beck Depression Inventory (BDI) (BDI ≥10 =depressive symptoms). HRQoL was assessed at the baseline and after 12 months. There were 244 patients with HA (mean age 70 years, 59% women); 103 patients (72 years, 38%) with CAD and 240 with DM (67 years, 52%). The change from baseline to the 12-month follow-up in 15D was significantly different between patients without and with depressive symptoms in CAD (p < 0.001) and DM (p = 0.024). In CAD with depressive symptoms, the change was −0.064 (95% CI: −0.094 to −0.035) and in DM −0.018 (95% CI: −0.037 to 0.001). In the 15 HRQoL dimensions of 15D, a depressive symptoms-related decrease was found in three dimensions with HA, in 9 with CAD and in 7 with DM. As a function of the BDI at baseline, the 15D score decreased significantly among patients with CAD and DM. Depressive symptoms impact negatively on future HRQoL among primary care patients with coronary artery disease and diabetes emphasizing that mood should be acknowledged in their care and follow-up. Clinical Trials registration number: NCT02992431, registered December 14th 2016 Health-related quality of life (HRQoL) is an important dimension of the quality and effectiveness of health care and an important predictor of mortality and morbidity. The main finding was that baseline depressive symptoms were associated with a decrease in the health-related quality of life after 12 months of follow-up, particularly in patients with coronary artery disease and diabetes. Beginning from the lowest scores, the severity of baseline depressive symptoms had a significant relationship with the level of deterioration in HRQoL among patients with coronary artery disease and diabetes. A significant decrease in HRQoL related to depressive symptoms was found in various different dimensions of HRQoL. [ABSTRACT FROM AUTHOR]

Background: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. Methods: We conducted a three‐stage study based on the James Lind Alliance priority‐setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. Results: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. Conclusions: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. Patient or Public Contribution: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD. [ABSTRACT FROM AUTHOR]

Background: Self-confidence, which is an important emotional need in women, affects women's quality of life. This research was conducted to evaluate the self-confidence of women with chronic diseases. Methods: This study was conducted at the internal medicine clinic of Erzincan Mengücek Gazi Training and Research Hospital in Turkey between August 2019 and June 2020. The sample consisted of 339 female patients with chronic diseases who agreed to participate in this study. Data were collected through face-to-face interviews using information form and the Women's Self-Confidence Scale. Results: The mean total score of the participants was 136.40 ± 24.92. Scores on the self-confidence scale significantly differed in accordance with the women's age, body mass index, educational status, type of family, place of residence, number of children, selfcare, history of smoking, allocation of time-to-herself, activity, perceived health status, presence of chronic obstructive pulmonary disease and other chronic diseases, and information received about the disease (p < 0.05). Conclusions: Women with chronic diseases had a moderate level of self-esteem. Self-confidence is a person's belief that they will perform a particular activity successfully and feel valued. People with high self-confidence are likely to be compatible with themselves through accumulating positive thoughts and feelings about themselves. Therefore, increasing the self-confidence of women with chronic diseases is important. [ABSTRACT FROM AUTHOR]

Background: Primary care and other health services have been disrupted during the COVID-19 pandemic, yet the consequences of these service disruptions on patients' care experiences remain largely unstudied. People with mental-physical multimorbidity are vulnerable to the effects of the pandemic, and to sudden service disruptions. It is thus essential to better understand how their care experiences have been impacted by the current pandemic. This study aims to improve understanding of the care experiences of people with mental-physical multimorbidity during the pandemic and identify strategies to enhance these experiences. Methods: We will conduct a mixed-methods study with multi-phase approach involving four distinct phases. Phase 1 will be a qualitative descriptive study in which we interview individuals with mental-physical multimorbidity and health professionals in order to explore the impacts of the pandemic on care experiences, as well as their perspectives on how care can be improved. The results of this phase will inform the design of study phases 2 and 3. Phase 2 will involve journey mapping exercises with a sub-group of participants with mental-physical multimorbidity to visually map out their care interactions and experiences over time and the critical moments that shaped their experiences. Phase 3 will involve an online, cross-sectional survey of care experiences administered to a larger group of people with mental disorders and/or chronic physical conditions. In phase 4, deliberative dialogues will be held with key partners to discuss and plan strategies for improving the delivery of care to people with mental-physical multimorbidity. Pre-dialogue workshops will enable us to synthesize an prepare the results from the previous three study phases. Discussion: Our study results will generate much needed evidence of the positive and negative impacts of the COVID-19 pandemic on the care experiences of people with mental-physical multimorbidity and shed light on strategies that could improve care quality and experiences. [ABSTRACT FROM AUTHOR]

Background: Patients with chronic diseases (PWCDs) were severely affected by the coronavirus disease 2019 (COVID-19) pandemic, as they were prevented from making the necessary visits to health facilities for medical review and to collect their medication. The emergence of the health crisis and inadequate access to quality care affected chronic care management. The perspectives of PWCDs are not known, and therefore the research on which this paper is based sought to investigate the lived experiences of these patients during the COVID-19 pandemic. Methods: A qualitative phenomenological design was used to obtain the lived experiences of PWCDs identified for participation in the study by means of purposive sampling. Patients' experiences were obtained during individual structured interviews, and a checklist was used to gather patient characteristics from their files. Results: Three themes emerged from the study findings, namely poor healthcare services, the socio-economic impact of the COVID-19 pandemic, and the psychological impact of the COVID-19 pandemic. The COVID-19 pandemic had devastating effects on PWCDs, in that they experienced barriers to accessing quality chronic care services and suffered psychological and financial difficulties that affected their health, life, needs and expectations. Conclusion: Policymakers should consider PWCDs when responding to a public health concern in the future. Contribution: The study findings may have an impact on future policies regulating the management of chronic diseases during epidemics, in order to improve patient health outcomes and satisfaction with healthcare services and the chronic care model based on the experiences of PWCDs. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYA) with a chronic somatic disease (CD) have a 3-fold higher risk of post-traumatic stress disorder (PTSD) than healthy controls. In addition, elevated post-traumatic stress symptoms (PTSS) have a negative impact on CD severity, treatment adherence, health problems and functional impairment. However, a more detailed understanding of this comorbidity is lacking. Methods: AYA with type 1 diabetes mellitus, juvenile idiopathic arthritis or cystic fibrosis (12–21 years of age) and elevated anxiety and/or depression symptoms, as well as their reference persons (≥ 18 years of age), completed online questionnaires in self- or observer report. The most stressful event related to the CD was reported descriptively. Questionnaires were used to assess PTSS, anxious and depressive symptoms, actual overall health, coping, personal growth and social support. Qualitative content analysis, linear regression models and correlations were used for mixed methods analysis. Results: According to the reports of n = 235 AYA (mean age 15.61; 73% girls) and n = 70 reference persons, four categories were identified as the most stressful events due to CD: (1) psychological burden (40% of AYA / 50% of reference persons); (2) CD self-management (32% / 43%); (3) social burden (30% / 27%); and (4) physical impairment (23% / 16%). 37% of AYA reported clinically relevant PTSS due to CD. The best predictors of PTSS severity were anxious-depressive symptoms, emotional coping, personal growth and current overall health (F(4, 224) = 59.404, R² = 0.515, p <.001). Of all categories, psychological (β = 0.216, p =.002) and social burden (β = 0.143, p =.031) showed significant association with the severity of PTSS (F(4, 230) = 4.489, R² = 0.072, p =.002). The more categories the most stressful event addressed, the higher was the PTSS symptom severity (r =.168, p =.010). Conclusions: Many AYA showed clinically relevant PTSS and reported experiencing stressful events in several areas of life through their CD. The association between the stressful event categories and other variables could help identify AYA with CD who need psychological interventions the most. Trial registration: : German Clinical Trials Register (DRKS): DRKS00016714, registered on 25/03/2019 and DRKS00017161, registered on 17/09/201. [ABSTRACT FROM AUTHOR]

Background: Suicide is a pressing public health problem, and firearm owners are at especially elevated risk. Certain health conditions are markers of suicide risk, but more research is needed on clinical risk markers for suicide among firearm owners specifically. Our goal was to examine associations of emergency department and inpatient hospital visits for behavioral and physical health conditions with firearm suicide among handgun purchasers. Methods: This was a case–control study of 5415 legal handgun purchasers in California who died between January 1, 2008, and December 31, 2013. Cases were firearm suicide decedents; controls were motor vehicle crash decedents. Exposures were emergency department and hospital visits for six categories of health diagnoses in the 3 years prior to death. To account for selection bias due to deceased controls, we used probabilistic quantitative bias analysis to generate bias-adjusted estimates. Results: There were 3862 firearm suicide decedents and 1553 motor vehicle crash decedents. In multivariable models, suicidal ideation/attempt (OR 4.92; 95% CI 3.27–7.40), mental illness (OR 1.97; 95% CI 1.60–2.43), drug use disorder (OR 1.40; 95% CI 1.05–1.88), pain (OR 1.34; 95% CI 1.07–1.69), and alcohol use disorder (OR 1.29; 95% CI 1.01–1.65) were associated with higher odds of firearm suicide. When adjusting for all conditions simultaneously, only the associations for suicidal ideation/attempt and mental illness remained significant. Quantitative bias analysis indicated that observed associations were generally biased downward. For example, the bias-adjusted OR for suicidal ideation/attempt was 8.39 (95% simulation interval 5.46–13.04), almost twice that of the observed OR. Conclusions: Diagnoses for behavioral health conditions were markers for firearm suicide risk among handgun purchasers, even for conservative estimates that did not adjust for selection bias. Encounters with the healthcare system may provide opportunities to identify firearm owners at high risk of suicide. [ABSTRACT FROM AUTHOR]

Background and Design: Chronic urticaria is characterized by the occurrence of hives (wheals) and/or angioedema for 6 weeks or more. Materials and Methods: This was a cross-sectional study. All participants were asked to complete the Epworth Sleepiness Scale (ESS), Pittsburgh Sleep Quality Index (PSQI), and Insomnia Severity Index (ISI). Patients with chronic spontaneous urticaria (CSU) completed the Urticaria Activity Score 7 (UAS-7) and Chronic Urticaria Quality of Life Questionnaire. Results: The study included 88 patients with CSU (26 men and 62 women) and 88 healthy controls (26 men and 62 women). The mean global PSQI score was 7.27±4.54 in the patient group and 4.97±2.82 in the control group (p<0.001). The mean ISI score was significantly higher in the patient group than in the control group (p=0.001). The mean ESS score did not differ between the patient and control groups (p=0.262). Conclusion: In this study, we found that more people in the patient group experienced poor sleep quality and insomnia compared with the control group. In the patient group, female sex, presence of CSU for more than 5 years, and presence of angioedema were associated with poor sleep quality. Patients with severe disease (high UAS-7 scores) had worse sleep quality. The erythrocyte sedimentation rate was found to be correlated with sleep disturbance. [ABSTRACT FROM AUTHOR]

Objective: With the diagnosis of chronic illness in children, a stressful period is likely to begin for both the affected child and their families. The aim of this study was to investigate the factors affecting chronic disease management by the parents of children diagnosed with type 1 diabetes mellitus (T1DM). Methods: The sample consisted of 110 children, aged between 4-17 years and their mothers. The patients had been diagnosed with T1DM for at least one year, and had attended pediatric endocrinology outpatients or were hospitalized in a single center. First, sociodemographic information about the child with T1DM were obtained. Then, the “Family Management Measure” (FaMM) was applied. The FaMM is constructed to measure family functioning and management in families who have a child with a chronic illness. Results: Paternal years of education (p=0.036), family income (p=0.008), insulin pump use (p=0.011), and time elapsed after diagnosis (p=0.048) positively affected both the management of T1DM and the child’s daily life. However, presence of chronic diseases in addition to T1DM (p=0.004) negatively affected diabetes management. Higher maternal education year (p=0.013) and family income level (p=0.001) increased parental mutuality scores. However, as the time after diagnosis increased, parental mutuality scores decreased. Conclusion: It is important to evaluate the child with chronic disease with a biopsychosocial approach. This approach aims to evaluate the problems of the child and his/her family who experience the disease with a holistic approach. [ABSTRACT FROM AUTHOR]

BACKGROUND: Electronic cigarettes (e-cigarettes) are known to cause adverse pulmonary effects, yet paradoxically, the prevalence of e-cigarette use has increased among individuals with chronic lung disease. We assessed the relationship between chronic lung disease and the susceptibility to e-cigarette use in adults and determined if specific behavioral, social, and environmental factors influence this relationship. METHODS: We enrolled adults age ≥ 18 y in Alabama with chronic lung disease from university medical clinics (n = 140) and individuals without chronic lung disease (n = 123, reference group) from January 2020-March 2021. A cross-sectional design was used where we administered questionnaires to collect sociodemographic information and assessed susceptibility to e-cigarette use, exposure to social and environmental factors (ie, advertisements, warning labels, special prices, others' e-cigarette vapors, use of an e-cigarette by others in the home, and visiting a web site or online discussion), and behavioral factors (ie, alcohol and cannabis use). Moderation analyses were conducted to determine if any of these factors would modify the association between chronic lung disease and susceptibility to e-cigarette use. RESULTS: Susceptibility to e-cigarette use was higher among adults without chronic lung disease than among those with chronic lung disease. Noticing e-cigarette warning labels and visiting a web site or online discussion about e-cigarettes were significantly associated with an increased likelihood of susceptibility to using e-cigarettes in both groups. Exposure to e-cigarette vapor from close contacts, special pricing, living with someone who uses e-cigarettes, and cannabis use were significantly associated with an increased likelihood of susceptibility to e-cigarette use in individuals without chronic lung disease. However, our analyses did not indicate a statistically significant interaction between chronic lung disease and any social, environmental, or behavioral factors on susceptibility to e-cigarette use. CONCLUSIONS: Individuals without chronic lung disease were more susceptible to e-cigarette use than those with chronic lung disease. Although the prevalence of some behavioral and environmental factors differed among individuals with and without chronic lung disease, these factors did not moderate the association between chronic lung disease and susceptibility to e-cigarette use. Longitudinal investigations are warranted to better test the temporal relationships between chronic lung disease, substance use, social and environmental factors, and the susceptibility to e-cigarette use among individuals with chronic lung disease to identify prevention strategies for this population. [ABSTRACT FROM AUTHOR]

Background: Among the nearly 41.8 million family caregivers of older adults 50 years of age and older in the United States, only 30% of caregivers report receiving the education, resources, and support they need to feel competent in their role. Many existing programs focus on dementia-related caregiving, and programs are needed to address the caregiving needs of individuals with chronic conditions. Method: A pilot study using a mixed methods design was conducted with eight participants. The pre and post. measure, Adult Carer Quality of Life (AC-QoL), and post program individual interviews were conducted. Results: Six of the eight AC-QoL subscales showed improvement in quality of life and two showed decreases. The effect size was 0.63 for the total AC-QoL score, requiring 25-30 participants to achieve a power of 0.80 in a larger study. Interview data indicated the program provided an outside perspective of caregiver needs, provided information, resources and a support system, reduced their stress, and improved self-efficacy. Conclusion: Further study of programs for caregivers of older adults with chronic conditions are important to fully address the needs of 35 million unpaid caregivers. Occupational therapists are ideally situated for leading the development of such programs given their unique practice focus and expertise. [ABSTRACT FROM AUTHOR]

Celiac disease (CD), also known as gluten-sensitive enteropathy, is an inflammatory autoimmune reaction triggered by ingestion of gluten in genetically predisposed subjects. Celiac disease is often associated with a wide range of disorders, caused by immune responses and by malabsorption with subsequent nutritional deficiencies. Prevalent neurologic manifestations are ataxia, epilepsy, cerebral calcification, cerebral white matter lesions, peripheral neuropathy and myopathy, but also cognitive impairment. The study aimed to identify emerging and urgent research domains in order to establish a CD-specific patient-tailored protocol that includes both psychological and neuropsychological evaluations. We performed a systematic search of MEDLINE, PubMed, SCOPUS, Web of Science and Cochrane library in November 2022. We conducted a descriptive analysis of the characteristics of the included literature. Based on the exclusion/inclusion criteria, a total of seven articles were included in the scoping review process. This review demonstrated the lack of research on CD-related cognitive impairment key features and tries to focus on both cognitive and psychological manifestations as well as their two-way interaction. We tried to establish the specific areas involved, in order to have a comprehensive view of this condition and trying to determine a correct way of assessing CD cognitive impairment and its correlations with psychological distress and personal coping skills to a chronic condition. Nevertheless, research on this topic is progressively increasing and future studies should address specific key points. [ABSTRACT FROM AUTHOR]

The article presents the discussion on use of virtual reality (VR) in managing psychological symptoms such as pain, depression, and anxiety in patients with chronic diseases, highlighting its potential benefits and the need for further research. Topics include effectiveness of VR for pain and anxiety management, the role of psychometric tests in nursing research; and diverse studies on psychosocial support and patient experiences across different countries.

Background: The trend of chronic diseases is increasing globally. Socioeconomic status (SES) is a major factor underlying many chronic diseases. This study was conducted to investigate the socioeconomic inequalities in distribution of chronic diseases in Iran, as a middle-income country. Methods: This cross-sectional study was conducted using the baseline data of the Kharameh cohort study, that were collected between 2014 and 2016. The number of participants in this study was 10 663 people in the age range of 35 to 70 years. Principal component analysis was used for calculating the SES of the people under study. In addition, we used concentration index and concentration curve to measure socioeco nomic inequality in chronic disease. Results: The mean age of 10,663 participants in our study was 52.15 ± 8.22 years and the male to female ratio was 1.26. Recurrent headache (25.8%( and hypertension (23.5%) were the most prevalent diseases. The concentration index showed that the distribution of movement disorder, recurrent headaches and gastroesophageal reflux diseases is significantly concentrated among people with low SES, and obesity among people with high SES. The results of the analysis by gender were similar to the results seen in all participants. Conclusion: The findings of this study show that socioeconomic inequality is the cause of the concentration of non-communicable diseases among people with low socio-economic status. Therefore, health policy makers should pay special attention to identifying vulnerable subgroups and formulate strategic plans to reduce inequalities. [ABSTRACT FROM AUTHOR]

Background: Determining the level of treatment adherence, beliefs about medicines, and social support levels of individuals with chronic diseases, examining the relationship between the adherence to treatment, beliefs about medication, and social support levels, and creating strategies for improving the level of adherence to treatment of individuals with chronic diseases. Aims: The study aims to evaluate the relationship between adherence to treatment, beliefs about medications, and social support. It is a descriptive correlational study. Method: The sample consisted of Turkish patients with ischemic stroke, type 2 diabetes, heart failure, and COPD (n=200). Data were obtained using the Medication Adherence Report Scale (MARS), the Beliefs about Medications Questionnaire (BMQ-T), and the Social Support Scale in Chronic Diseases (SSCII). Results: The mean age of the patients was 71.57 ± 10.77 years. MARS score was 21.48 ± 3.91, and the total score of SSCII was 160.17 ± 51.87. Analyses revealed a statistically significant correlation between the MARS and the BMQ-T General Overuse sub-dimension scores (p = 0.020), the total MARS scores, and the BMQ-T General Harm sub-dimension scores (p = 0.002). The study found correlations between the total MARS and the SSCII scores (p > 0.05). However, there was no statistically significant correlation between BMQ-T and SSCII scores (p > 0.05). Conclusion: To improve medication adherence and increase patients' positive beliefs about medicines, health professionals caring for and monitoring patients with chronic diseases need to cooperate with the family and other social support resources and provide training and counseling. [ABSTRACT FROM AUTHOR]

Objectives: Many older adults with multiple chronic conditions (MCC) frequently experience hospitalizations, functional limitations, and poor quality of life. Outcomes may be improved by promoting self-regulation, which may individuals respond to health threats and manage their health conditions. The aim of this study was to describe self-regulatory coping among older adults with MCC. Methods: A qualitative descriptive study using semi-structured interviews and content analysis and guided by the Common-Sense Self-Regulation Model. Seventeen community-dwelling older adults with two or more chronic conditions participated in our study. Results: Three themes were developed from the analysis: (1) "I don't think about it unless something happens": coping in the absence of a health event, (2) "doing what I am supposed to do": coping during a health event, and (3) "How do I know if what I did works?": appraisal of coping success. Discussion: Self-regulatory coping was influenced by individual beliefs and experiences (illness representations), context, self-efficacy and availability of support and resources to cope with MCC. These findings suggest implications for clinical practice and future self-regulation interventions for older adults with MCC. [ABSTRACT FROM AUTHOR]

Aims: To systematically review the qualitative evidence related to experiences of patients with temporomandibular disorders (TMD) and to explore their journeys within health care services. Methods: A systematic search of the following databases was conducted: MEDLINE, Embase, PsycINFO, Web of Science, CINAHL Complete, and the Cochrane database. Thematic synthesis was used to analyze and synthesize the data from qualitative studies that explored the journeys of TMD patients within health care services. The Critical Appraisal Skills Programme (CASP) tool was used to critically appraise the quality of the included studies. Results: The search strategies yielded 4,563 articles across all databases, and 18 articles were eventually included. Six themes were derived: care-seeking attitudes; expectations and health care experience; the patient-clinician interaction; diagnosis as a stepping stone for improvement; management; and social support. Conclusion: The journey within health care services may play a valuable role in the ability to cope with chronic TMDs. Receiving a diagnosis, being listened to, and being believed are among the most important elements making for a positive clinical experience. [ABSTRACT FROM AUTHOR]

Retirement-aged workers with chronic conditions are increasingly engaged in late-life careers in the policy context of delayed retirement initiative. However, it remains uncertain as to how chronic conditions and employment-based social health insurance interact to affect health-related working capacity and late career participation in this group of people. Using data from the China Health and Retirement Longitudinal Study (CHARLS) and the discrete choice model, this study finds that chronic conditions are negatively associated with health-related working capacity (– 0.400, p < 0.01) and late-life career participation (– 0.170, p < 0.01). Employment-based health insurance is positively associated with health-related working capacity of retirement-aged workers (0.432, p < 0.01), but is negatively associated with their late-life career participation (– 1.027, p < 0.01). Moreover, employment-based health insurance could weaken the negative associations between chronic conditions and health-related working capacity (interaction = 0.285, p < 0.05) and late-life career participation (interaction = 0.251, p < 0.05). More fine-grained policies for delayed retirement are needed to focus on the long-neglected health of retirement-aged workers with chronic conditions. [ABSTRACT FROM AUTHOR]

We have previously proposed a list of determinants (causes) of modern lifestyle-related chronic disorders, which provides a structure for the emerging discipline of lifestyle medicine. This consists of lifestyle factors with a common immune biomarker (metaflammation) that interact in a systems fashion linked with chronic disease outcomes. We considered this to be a work in progress and later added 3 psychosocial determinants into the causal mix: meaninglessness, alienation, and loss of culture and identity (MAL). Here, we propose adverse childhood experiences (ACEs) as deeper, or even more distal, disease drivers that may act directly or indirectly through MAL to influence later chronic disease. The links with metaflammation and the need for recognition of these embedded scars in the management of lifestyle-related health problems is discussed. [ABSTRACT FROM AUTHOR]

Introduction: People who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision‐making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care. Methods: This article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis. Results: Committee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship‐building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship‐building required for successful partnership between researchers and people with lived experience of homelessness. Conclusion: PROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts. Patient or Public Contribution: This study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article. [ABSTRACT FROM AUTHOR]

Chronic diseases cause physical and psychological impacts on sufferers. In dealing with illness, the family is not involved in the treatment of chronic diseases. Children also do not receive support from their families in dealing with their illness. Family empowerment is an important thing to implement in treating children with chronic diseases. The purpose of this study was to explore family empowerment interventions as potential methods to reduce the impact of chronic disease. This study used the scoping review method. A literature review was conducted via CINAHL, PubMed, and ProQuest databases. The keywords used in English were "family empowerment OR family center empowerment" AND "child OR children" AND "chronic disease". The criteria for articles in this study were full text, free access, randomized control trial or quasi-experiment research design, English language, population and samples of chronic disease, and the publication period of the last 10 years (2013–2022). We found nine articles that used a family empowerment intervention in an effort to reduce the impact of chronic disease on children. Most of the study designs were randomized control trial and quasi-experiment. Some of the benefits of family empowerment interventions were quality of life, family care, and self-ability. The interventions helped the families to be empowered and actively participate in caring for children with chronic diseases. There were nine articles that discussed family empowerment interventions that have an impact in dealing with the impact of chronic disease on children, namely improving quality of life, family care, and self-ability. [ABSTRACT FROM AUTHOR]

Background: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case–control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults. Methods: A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8–12, 13–17, and > = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, how they would define "QOL"; and goals; answers to the prompts were then coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences), and testing for the effects of role (patient or comparison), age, and role-by-age interactions. Results: The study sample of DMD (n = 285) and comparison (n = 292) participants provided open-text data: 577 wishes statements, 283 QOL-definition statements, and 149 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between different raters' codes. Results suggested that people with DMD have aspirations that differ from their peers in several important ways. Both open-text and closed-ended data in both unadjusted and adjusted analyses generally showed that people with DMD were more focused on intrinsic aspirations such as health, healthcare, and independence than their peers. Compared to non-DMD persons, DMD individuals were much less focused on financial or housing concerns, community contributions, or spiritual growth. With age, patients' aspirations focused less on extrinsic aspirations such as careers and work and increasingly emphasized emotion-oriented goals. Patients were markedly less likely to give a direct answer to the open-ended goals question. Conclusion: There were important differences in aspirations between people with DMD and their peers. These findings may be helpful for developing psychosocial interventions. [ABSTRACT FROM AUTHOR]

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their homes and family lives. We searched the literature on psychosocial considerations for children with rare diseases in PubMed and Google Scholar in English until 15 April 2022, excluding publications unavailable in full text. The results examine RD and their psychosocial ramifications for children, families, and the healthcare system. The domains of the home, school, community, and medical care are addressed, as are the implications of RD management as children transition to adulthood. Matters of relevant healthcare, public policies, and more sophisticated translational research that addresses the intersectionality of identities among RD are proposed. Recommendations for interventions and supportive care in the aforementioned domains are provided while emphasizing calls to action for families, clinicians, investigators, and advocacy agents as we work toward establishing evidence-based care for children with RD. [ABSTRACT FROM AUTHOR]

Background: Hypertension is a major risk factor of cardiovascular mortality. Mood disorders represent a growing public health problem worldwide. A complex relationship is present between mood disorders and cardiovascular diseases. However, less data is available about the level of depression and anxiety in different hypertension phenotypes. The aim of our study was to evaluate psychometric parameters in healthy controls (Cont), in patients with white-coat hypertension (WhHT), with chronic, non-resistant hypertension (non-ResHT), and with chronic, treatment-resistant hypertension (ResHT). Methods: In a cross-sectional study setup 363 patients were included with the following distribution: 82 Cont, 44 WhHT, 200 non-ResHT and 37 ResHT. The patients completed the Beck Depression Inventory (BDI) and the Hamilton Anxiety Scale (HAM-A). Results: BDI points were higher in WhHT (7 (3–11)) and ResHT (6 (3–11.5)) compared with Cont (3 (1–6), p < 0.05). Similarly, HAM-A points were higher in WhHT (8 (5–15)) and ResHT (10.5 (5.25–18.75)) compared with Cont (4 (1–7), p < 0.05) and also compared with non-ResHT (5 (2–10), p < 0.05). ResHT was independently associated with HAM-A scale equal or above 3 points (Beta = 3.804, 95%CI 1.204–12.015). WhHT was independently associated with HAM-A scale equal or above 2 points (Beta = 7.701, 95%CI 1.165–18.973) and BDI scale equal or above 5 points (Beta = 2.888, 95%CI 1.170–7.126). Conclusions: Our results suggest psychopathological similarities between white-coat hypertension and resistant hypertension. As recently it was demonstrated that white-coat hypertension is not a benign condition, our findings can have relevance for future interventional purposes to improve the outcome of these patients. [ABSTRACT FROM AUTHOR]

Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors. [ABSTRACT FROM AUTHOR]

Psychosocial factors are associated with the achievement of optimal cardiovascular disease risk factor (CVDRF) levels. To date, little research has examined multiple psychosocial factors simultaneously to identify distinguishing psychosocial profiles among individuals with CVDRF. Further, it is unknown whether profiles are associated with achievement of CVDRF levels longitudinally. Therefore, we characterized psychosocial profiles of individuals with CVDRF and assessed whether they are associated with achievement of optimal CVDRF levels over 15 years. We included 1148 CARDIA participants with prevalent hypertension, hypercholesterolemia and/or diabetes mellitus in 2000–2001. Eleven psychosocial variables reflecting psychological health, personality traits, and social factors were included. Optimal levels were deemed achieved if: Hemoglobin A1c (HbA1c) < 7.0%, low-density lipoprotein (LDL) cholesterol < 100 mg/dl, and systolic blood pressure (SBP) < 140 mm Hg. Latent profile analysis revealed three psychosocial profile groups "Healthy", "Distressed and Disadvantaged" and "Discriminated Against". There were no significant differences in achievement of CVDRF levels of the 3 targets combined across profiles. Participants in the "Distressed and Disadvantaged" profile were less likely to meet optimal HbA1c levels compared to individuals in the "Healthy" profile after demographic adjustment. Associations were attenuated after full covariate adjustment. Distinct psychosocial profiles exist among individuals with CVDRF, representing meaningful differences. Implications for CVDRF management are discussed. [ABSTRACT FROM AUTHOR]

Introduction: Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth understanding of researchers' and YPCC's perspectives on meaningful impact. Methods: We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., 'YPCC acquire new knowledge and skills') based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. Results: Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. Conclusion: The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. Patient or Public Contribution: An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to assess advance care planning readiness among patients with chronic diseases and identify its relationship to patients' coping styles. Design: A cross‐sectional study. Methods: Patients with chronic diseases (N = 168) were recruited from community health service centres. We used a self‐designed and validated "advance care planning readiness questionnaire" to measure the patients' advance care planning readiness and a "simplified coping style questionnaire" to measure the patients' coping styles. Results: Multiple linear regression analyses observed a positive relationship between "active coping style" (p =.002, 95%CI: 1.788, 7.599) with ACP readiness and a negative relationship between "passive coping style" (p <.001, 95%CI: −10.526, −4.274) with ACP readiness. Our study showed that there was a clear relationship between coping styles and ACP readiness. We suggest encouraging patients to choose more active coping strategies and to explore suitable conversation strategies for different coping styles when facilitating ACP discussion. [ABSTRACT FROM AUTHOR]

Introduction: Persistent pain (PP) and long-term conditions are all associated with psychological well-being. Less is known about their associations with reduced psychological well-being when co-occurring. We investigated how PP and long-term physical and mental conditions relate to psychological well-being when occurring together. Method: Data collected in the Danish population-based Lolland-Falster Health study were used in this cross-sectional study. Participants aged ≥18 years completing questions concerning PP, long-term conditions and psychological well-being were included. PP and long-term conditions were defined as conditions lasting 6 months or longer. Psychological well-being was assessed by the World Health Organization Well-Being Index (WHO-5). Multiple linear regression investigated combinations of PP and physical and mental long-term conditions and their associations with WHO-5. Results: Of 11,711 participants, 10,744 had available data. One third had PP (n = 3250), while 6144 (57%), 213 (2%) and 946 (9%) reported having only physical conditions, only mental conditions or both, respectively. All combinations of PP and long-term conditions were negatively associated with WHO-5. PP in combination with mental (−23.1 (95% CI −28.3 to −17.8)) or both physical and mental conditions (−25.1 (−26.7 to −23.52) yielded the strongest negative associations. Two or more pain sites together with long-term physical and mental conditions was associated with a lower WHO-5 score (−6.2 (−8.9 to −3.5) compared to none or one pain site. Conclusion: The presence of PP and long-term conditions, in particular mental conditions, were strongly associated with worse psychological well-being. This highlights the importance of assessing psychological well-being in individuals with PP and long-term conditions. [ABSTRACT FROM AUTHOR]

The article discusses the importance of managing chronic health conditions and highlights the impact of mental and physical health on patients' quality of life. Topics include resilience, sense of coherence, and health literacy, as explored in papers examining depression prevalence, the mediating effects of sense of coherence on quality of life, and the positive effects of health literacy education programs on depression and renal function.

Introduction: Patients with chronic diseases can experience psychological conditions, including anxiety and depression. However, the association between chronic diseases and these psychological conditions remains unclear. This study aimed to identify the relationship between anxiety, depression, and common chronic diseases (hypertension, type 2 diabetes, dyslipidemia, and rheumatoid arthritis), and their association with social determinants at an outpatient primary care setting. Methods: The validated hospital anxiety and depression scale was administered electronically to eligible participants. For each condition (anxiety and depression), participants were categorized as normal, borderline abnormal, and abnormal, according to their score out of 21 (≤7 = normal, 8-10 = borderline abnormal, ≥11 = abnormal). The scores and numbers of participants in each category were analyzed and compared with their demographic characteristics and chronic diseases for associations and relationships. Results: We recruited 271 participants (mean age of 51.65 + 11.71 years) attending primary care clinics. Of these patients, 17.7% and 8.9% had borderline abnormal and abnormal depression, respectively, and 10.3% and 8.9% of patients had borderline abnormal anxiety and abnormal anxiety. Common social determinants and lifestyle factors were examined. Age, gender, and sugary drinks' consumption significantly increased the odds of hypertension and type 2 diabetes; vigorous physical activity 3 times a week, decreased the odds of developing these chronic diseases. Adjusted regression models showed a statistically significant association between the hospital anxiety and depression scale score for borderline and abnormal anxiety and the presence of type 2 diabetes (OR 3.04 [95% CI 1.13, 8.19], P -value =.03 and OR 4.65 [95% CI 1.63,13.22], P -value <.03, respectively) and dyslipidemia (OR 5.93 [95% CI 1.54, 22.86], P -value =.01, and OR 4.70 [95% CI 0.78, 28.35], P -value =.09, respectively). The odds of developing depression were 4 times higher (P -value.04) in patients with rheumatoid arthritis. Conclusion: Among patients attending primary care outpatient clinics, anxiety, and depression were significantly associated with type 2 diabetes and rheumatoid arthritis, respectively. Social determinants and lifestyle factors play a major role in the development of common chronic diseases in Saudi Arabia. Primary care physicians should consider the patients' psychological status, sociodemographic status, and lifestyle risks during the management of chronic diseases. [ABSTRACT FROM AUTHOR]

Background: Psychosocial risk factors have been identified as factors for prolonged occupational disability in individuals with debilitating musculoskeletal injuries, chronic pain and mental health conditions Purpose: This study has the complementary aims of identifying the correlations of psychosocial risk factors with (1) symptom profile factors and (2) the perceived impact of health conditions on the performance of daily activities based on the behavioural indicators of veterans referred for interdisciplinary rehabilitation in a sample of veterans of the Canadian Armed Forces (VCAF) Materials and methods: We used a retrospective and cross-sectional non-experimental correlational analysis study design The correlational analyses were performed using the following variables: psychosocial risk factors and symptom profile factors, and the perceived impact of health conditions on the performance of daily activities based on behavioural indicators Results: A statistically significant correlation was found between the overall Sickness Impact Profile (SIP) score and perceived disability, catastrophic thoughts, perceived injustice, fear of movement, and between fatigue and the physical dimension SIP score Conclusion: Veterans who have an alarmist view of their symptoms, who are fearful of exacerbating their symptoms through movement, and who harbour feelings of unfairness or injustice experienced a greater perceived impact of their health conditions on their performance of daily activities. [ABSTRACT FROM AUTHOR]