Chronic Health Conditions Research Articles

Picturing the dance: intersections of gender, sexuality, and age in older women queer square dancers.

A dearth of research has focused on the diverse experiences of aging sexual minority populations and, in particular, older sexual minority women. Studies that have disaggregated the population of lesbian, gay, bisexual, transgender, questioning, queer, intersex and two-spirit (LGBTQIS+) older adults reveal that due to minority stress and a lifetime of disadvantage. Lesbians experience higher rates of chronic health conditions and mental health problems (including loneliness) than heterosexual women and greater financial inequalities compared to gay men or heterosexual women. Despite this, limited inquiry has explored the everyday lives of older queer women and fewer still draws upon women's commentary on their own lived experiences or centers older women as authoritative agents and experts on their own lives. In response to this knowledge deficit, this research traverses the aging experiences of female-identified members of a gay square dance (GSD) club in Toronto, Canada. We apply queer theory to explicate the unique ways in which a GSD club queers the aging process for 14 older women dancers. Findings of the inquiry highlight the ways in which these dancers confront and reject heteronormativity, while illuminating pathways to successful aging for older sexual diverse women. The older women dancers in this study perform gender in ways that challenged heteronormativity and gender binaries, enhanced belongingness and acceptance, embodied joy, and fostered wellness. These concepts have been identified as critical factors in successful aging and highlight what queering aging might look like for this resilient population who have overcome a lifetime of disadvantage.

Alzheimer's disease: insights into pathology, molecular mechanisms, and therapy.

Alzheimer's disease (AD), the leading cause of dementia, is characterized by the accumulation of amyloid plaques and neurofibrillary tangles in the brain. This condition casts a significant shadow on global health due to its complex and multifactorial nature. In addition to genetic predispositions, the development of AD is influenced by a myriad of risk factors, including aging, systemic inflammation, chronic health conditions, lifestyle and environmental exposures. Recent advancements in understanding the complex pathophysiology of AD are paving the way for enhanced diagnostic techniques, improved risk assessment, and potentially effective prevention strategies. These discoveries are crucial in the quest to unravel the complexities of AD, offering a beacon of hope for improved management and treatment options for the millions affected by this debilitating disease.

Chronic Health Conditions and Longitudinal Employment in Survivors of Childhood Cancer

Employment is an important factor in quality of life and provides social and economic support. Longitudinal data on employment and associations with chronic health conditions for adult survivors of childhood cancer are lacking. To evaluate longitudinal trends in employment among survivors of childhood cancer. Retrospective cohort study of 5-year cancer survivors diagnosed at age 20 years or younger between 1970 and 1986 enrolled in the multi-institutional Childhood Cancer Survivor Study (CCSS). Sex-stratified employment status at baseline (2002 to 2004) and follow-up (2014 to 2016) was compared with general population rates from the Behavioral Risk Factor Surveillance System cohort. Data were analyzed from July 2021 to June 2022. Cancer therapy and preexisting and newly developed chronic health conditions. Standardized prevalence ratios of employment (full-time or part-time, health-related unemployment, unemployed, not in labor force) among adult (aged ≥25 years) survivors between baseline and follow-up compared with the general population. Longitudinal assessment of negative employment transitions (full-time to part-time or unemployed at follow-up). Female participants (3076 participants at baseline; 2852 at follow-up) were a median (range) age of 33 (25-53) years at baseline and 42 (27-65) years at follow-up; male participants (3196 participants at baseline; 2557 at follow-up) were 33 (25-54) and 43 (28-64) years, respectively. The prevalence of full-time or part-time employment at baseline and follow-up was 2215 of 3076 (71.3%) and 1933 of 2852 (64.8%) for female participants and 2753 of 3196 (85.3%) and 2079 of 2557 (77.3%) for male participants, respectively, with declining standardized prevalence ratios over time (female participant baseline, 1.01; 95% CI, 0.98-1.03; follow-up, 0.94; 95% CI, 0.90-0.98; P < .001; male participant baseline, 0.96; 95% CI, 0.94-0.97; follow-up, 0.92; 95% CI, 0.89-0.95; P = .02). While the prevalence of health-related unemployment increased (female participants, 11.6% to 17.2%; male participants, 8.1% to 17.1%), the standardized prevalence ratio remained higher than the general population and declined over time (female participant baseline, 3.78; 95% CI, 3.37-4.23; follow-up, 2.23; 95% CI, 1.97-2.51; P < .001; male participant baseline, 3.12; 95% CI, 2.71-3.60; follow-up, 2.61; 95% CI, 2.24-3.03; P = .002). Among survivors employed full-time at baseline (1488 female participants; 1933 male participants), 285 female participants (19.2%) and 248 male participants (12.8%) experienced a negative employment transition (median [range] follow-up, 11.5 [9.4-13.8] years). Higher numbers and grades of chronic health conditions were significantly associated with these transitions. In this retrospective analysis of adult survivors of childhood cancer, significant declines in employment and increases in health-related unemployment among cancer survivors compared with the general population were identified. A substantial portion of survivors in the midcareer age range fell out of the workforce. Awareness among clinicians, caregivers, and employers may facilitate clinical counseling and occupational provisions for supportive work accommodations.

Using an mHealth approach to collect patient-generated health data for predicting adverse health outcomes among adult survivors of childhood cancer

IntroductionCancer therapies predispose childhood cancer survivors to various treatment-related late effects, which contribute to a higher symptom burden, chronic health conditions (CHCs), and premature mortality. Regular monitoring of symptoms between clinic visits is useful for timely medical consultation and interventions that can improve quality of life (QOL). The Health Share Study aims to utilize mHealth to collect patient-generated health data (PGHD; daily symptoms, momentary physical health status) and develop survivor-specific risk prediction scores for mitigating adverse health outcomes including poor QOL and emergency room admissions. These personalized risk scores will be integrated into the hospital-based electronic health record (EHR) system to facilitate clinician communications with survivors for timely management of late effects.MethodsThis prospective study will recruit 600 adult survivors of childhood cancer from the St. Jude Lifetime Cohort study. Data collection include 20 daily symptoms via a smartphone, objective physical health data (physical activity intensity, sleep performance, and biometric data including resting heart rate, heart rate variability, oxygen saturation, and physical stress) via a wearable activity monitor, patient-reported outcomes (poor QOL, unplanned healthcare utilization) via a smartphone, and clinically ascertained outcomes (physical performance deficits, onset of/worsening CHCs) assessed in the survivorship clinic. Participants will complete health surveys and physical/functional assessments in the clinic at baseline, 2) report daily symptoms, wear an activity monitor, measure blood pressure at home over 4 months, and 3) complete health surveys and physical/functional assessments in the clinic 1 and 2 years from the baseline. Socio-demographic and clinical data abstracted from the EHR will be included in the analysis. We will invite 20 cancer survivors to investigate suitable formats to display predicted risk information on a dashboard and 10 clinicians to suggest evidence-based risk management strategies for adverse health outcomes.AnalysisMachine and statistical learning will be used in prediction modeling. Both approaches can handle a large number of predictors, including longitudinal patterns of daily symptoms/other PGHD, along with cancer treatments and socio-demographics.ConclusionThe individualized risk prediction scores and added communications between providers and survivors have the potential to improve survivorship care and outcomes by identifying early clinical presentations of adverse events.

The extended impact of co-designed personalised aids for people living with chronic conditions: an exploratory study in a healthcare setting

Assistive technology has great potential to help individuals living with chronic health conditions, however devices often fail to align with the unique requirements of users. These results in device abandonment and missed opportunities to benefit people. This exploratory study aims to evaluate the short and longer-term satisfaction, psychological benefit, use and resources involved in co-designed customised assistive devices within a current healthcare service. Individuals with chronic health conditions identified daily living challenges. Eleven individuals completed the trial and were involved throughout the design process. Outcome measures evaluated the impact of the devices provided, healthcare utilisation, help required, and resources used. Nineteen custom assistive devices were produced for twenty-four challenges in daily living identified. At 3-months, eighteen devices were still being used. Daily challenges had become easier for individuals to complete and required less help from informal carers. Individuals were satisfied with the devices and service provided. Improvements in competence, adaptability and self-esteem were sustained long-term. The average clinician’s time required to produce a device was 5 h 55 min, with an average cost of £203.79. People with chronic conditions were able to benefit from the co-design process resulting in satisfaction and long-term utilisation of the device, and positive psycho-social benefits. The costs associated with embedding this approach in a healthcare service were calculated. Scaling up the co-design process reduced the associated costs per device compared to previous work. Further work is required to evaluate co-designing across larger samples and explore opportunities to further improve the cost-efficiency.

Multimorbidity-associated emergency hospital admissions: a “screen and link” strategy to improve outcomes for high-risk patients in sub-Saharan Africa: a prospective multicentre cohort study protocol

Background The prevalence of multimorbidity (the presence of two or more chronic health conditions) is rapidly increasing in sub–Saharan Africa. Hospital care pathways that focus on single presenting complaints do not address this pressing problem. This has the potential to precipitate frequent hospital readmissions, increase health system and out-of-pocket expenses, and may lead to premature disability and death. We aim to present a description of inpatient multimorbidity in a multicentre prospective cohort study in Malawi and Tanzania. Primary objectives Determine prevalence of multimorbid disease among adult medical admissions and measure patient outcomes. Health Economic: Measure economic costs incurred and changes in health-related quality of life (HRQoL) at 90 days post-admission. Situation analysis: Qualitatively describe pathways of patients with multimorbidity through the health system. Secondary objectives Determine hospital readmission free survival and markers of disease control 90 days after admission. Health Economic: Present economic costs from patient and health system perspective, sub-analyse costs and HRQoL according to presence of different diseases. Situation analysis: Understand health literacy related to their own diseases and experience of care for patients with multimorbidity and their caregivers. Methods This is a prospective longitudinal cohort study of adult (≥18 years) acute medical hospital admissions with nested health economic and situation analysis in four hospitals: 1) Queen Elizabeth Central Hospital, Blantyre, Malawi; 2) Chiradzulu District Hospital, Malawi; 3) Hai District Hospital, Boma Ng’ombe, Tanzania; 4) Muhimbili National Hospital, Dar-es-Salaam, Tanzania. Follow-up duration will be 90 days from hospital admission. We will use consecutive recruitment within 24 hours of emergency presentation and stratified recruitment across four sites. We will use point-of-care tests to refine estimates of disease pathology. We will conduct qualitative interviews with patients, caregivers, healthcare providers and policymakers; focus group discussions with patients and caregivers, and observations of hospital care pathways.

Menstrual pain in Australian adolescent girls and its impact on regular activities: a population-based cohort analysis based on Longitudinal Study of Australian Children survey data.

To determine the proportion of Australian adolescent girls who experience menstrual pain (dysmenorrhea); to assess associations of dysmenorrhea and period pain severity with adolescents missing regular activities because of their periods. Prospective, population-based cohort study; analysis of Longitudinal Study of Australian Children (LSAC) survey data. Female adolescents in the nationally representative cross-sequential sample of Australian children recruited in 2004 for the Kinder cohort (aged 4-5 years at enrolment). Survey data from waves 6 (mean age 14 years), wave 7 (16 years) and wave 8 (18 years) were analysed. Severity of period pain during the preceding three months (very, quite, a little, or not at all painful); number of activity types missed because of periods; relationship between missing activities and period pain severity. Of the 1835 participating female members of the LSAC Kinder cohort at waves 6 to 8, 1600 (87%) responded to questions about menstruation during at least one of waves 6 to 8 of data collection. At wave 6 (14 years), 227 of 644 respondents (35%) reported dysmenorrhea, 675 of 1341 (50%) at wave 6 (16 years), and 518 of 1115 (46%) at wave 8 (18 years). Of the 366 participants who reported period pain severity at all three waves, 137 reported no dysmenorrhea at all three waves (37%), 66 reported dysmenorrhea at all three waves (18%), 89 reported increasing period pain over time (24%), and 38 reported declining pain (10%). At wave 6, 223 of 647 participants reported missing at least one activity because of their periods (34%), 454 of 1341 at wave 7 (34%), and 344 of 1111 at wave 8 (31%). Of the participants who experienced very painful periods, 72% (wave 6), 63% (wave 7), and 65% (wave 8) missed at least one activity type because of their periods, as did 45% (wave 6), 36% (wave 7), and 40% (wave 8) of those who experienced quite painful periods. A large proportion of adolescent girls in Australia experience period pain that affects their engagement in regular activities, including school attendance. Recognising adolescent period pain is important not only for enhancing their immediate quality of life with appropriate support and interventions, but also as part of early screening for chronic health conditions such as endometriosis.

Periprosthetic Joint Infection in Patients With Arthroplasty Undergoing Perioperative Colonoscopy

Periprosthetic joint infection (PJI) is a rare but devastating complication. Most patients undergoing total joint arthroplasty (TJA) also need routine screening colonoscopy, in which transient bacteremia may be a potential source for hematogenous PJI. Patients and surgeons must decide on an optimal time span or sequence for these 2 generally elective procedures, but no such guidelines currently exist. To evaluate associations of colonoscopy with the risk of post-TJA PJI for the development of clinical practice recommendations for colonoscopy screening in patients undergoing TJA. This retrospective cohort study of Military Health System (MHS) beneficiaries older than 45 years who underwent TJA from January 1, 2010, to December 31, 2016, used propensity score matching and logistic regression to evaluate associations of colonoscopy with PJI risk. Statistical analyses were conducted between January and October 2023. Colonoscopy status was defined by Current Procedural Terminology code for diagnostic colonoscopy within 6 months before or 6 months after TJA. Periprosthetic joint infection status was defined by a PJI International Classification of Diseases code within 1 year after TJA and within 1 year from the post-TJA index colonoscopy date. Analyses included 243 671 patients (mean [SD] age, 70.4 [10.0] years; 144 083 [59.1%] female) who underwent TJA in the MHS from 2010 to 2016. In the preoperative colonoscopy cohort, 325 patients (2.8%) had PJI within 1 year postoperatively. In the postoperative colonoscopy cohort, 138 patients (1.8%) had PJI within 1 year from the index colonoscopy date. In separate analyses of colonoscopy status within 6 months before and 6 months after TJA, younger age, male sex, and several chronic health conditions (diabetes, kidney disease, and pulmonary disease) were each associated with higher PJI risk. However, no association was found with PJI risk for perioperative colonoscopy preoperatively (adjusted odds ratio, 1.10; 95% CI, 0.98-1.23) or postoperatively (adjusted odds ratio, 0.90; 95% CI, 0.74-1.08). In this large retrospective cohort of patients undergoing TJA, perioperative screening colonoscopy was not associated with PJI and should not be delayed for periprocedural risk. However, health conditions were independently associated with PJI and should be medically optimized.

'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course.

Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment-related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. A qualitative design was used with semi-structured interviews (online or in-person) with participants recruited through audiology services and nonclinical services, such as lip-reading classes. Forty-six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld-led care, family-centred care and peer support to build support for those with hearing loss. We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co-authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.

Evaluation of population-based screening programs on colorectal cancer screening uptake and predictors in Atlantic Canada: insights from a repeated cross-sectional study

BackgroundColorectal cancer (CRC) poses a significant public health challenge in Canada, with the Atlantic provinces bearing a particularly high burden. The implementation of population-based colon screening programs is aimed to address this concern. However, limited research exists on the effect of these programs especially in Canada. This study aimed to examine the impact of the first few years of the CRC screening programs in the Atlantic provinces of Canada by assessing changes in screening uptake, barriers, and predictors of screening among eligible populations.MethodsEmploying a repeated cross-sectional design, this study analyzed data from a representative sample of 7614 respondents in 2010 and 6850 in 2017 from the Atlantic provinces aged 50–74 years, extracted from the Canadian Community Health Survey (CCHS). The outcomes measured were CRC screening rates, changes in predictors of screening uptake, and barriers to participation. Potential predictors examined included age, sex, income, education, smoking, and health status.ResultsThe proportion of adults aged 50–74 years who meet CRC screening requirements increased from 42% in 2010 to 54% in 2017 yet below the national target of 60%. New Brunswick reported the most significant increase in screening prevalence (18%, p < 0.05). Participation in fecal tests increased from 19.6 to 32.4%. Despite these improvements, disparities in screening participation remained, with lower uptake observed among individuals with lower income and education levels. Age (> 60 years, OR = 2.09, p < 0.01), the presence of multiple chronic health conditions (OR = 2.11, p < 0. 01), being female (OR = 1.21, p < 0.01), married status (OR = 1.21, p < 0.05), access to regular healthcare (OR = 1.91, p < 0.01), and nonsmoking status (OR = 2.55, p < 0.01) were identified as significant predictors of CRC screening uptake.ConclusionsThis study shows that while CRC screening uptake increased across the Atlantic provinces between 2010 and 2017, barriers to and disparities in screening participation persist. This highlights the need for targeted interventions to improve awareness, access, and screening uptake, particularly among disadvantaged groups, to promote equitable healthcare outcomes. Continued efforts should focus on reducing barriers to screening and leveraging available evidence to inform interventions aimed at mitigating the CRC burden in the region.

General population normative values for the EORTC QLQ-C30 by age, sex, and health condition for the French general population

BackgroundGeneral population normative values for the widely used health-related quality of life (HRQoL) measure EORTC QLQ-C30 support the interpretation of trial results and HRQoL of patients in clinical practice. Here, we provide sex-, age- and health condition-specific normative values for the EORTC QLQ-C30 in the French general population.MethodsFrench general population data was collected in an international EORTC project. Online panels with quota samples were used to recruit sex and age groups. Number and type of comorbidities were assessed. Descriptive statistics were used to calculate general population values for each QLQ-C30 scale, separately for sex, age, and presence of one- and more chronic health conditions. A multivariate linear regression model has been developed to allow estimating the effect of sex, age, and the presence for one- and more chronic health conditions on EORTC QLQ-C30 scores. Data was weighted according to United Nation statistics adjusting for the proportion of sex and age groups.ResultsIn total, 1001 French respondents were included in our analyses. The weighted mean age was 47.9 years, 514 (51.3%) participants were women, and 497 (52.2%) participants reported at least one health condition. Men reported statistically significant better scores for Emotional Functioning (+9.6 points, p = 0.006) and Fatigue (−7.8 point; p = 0.04); women reported better profiles for Role Functioning (+8.7 points; p = 0.008) and Financial Difficulty (−7.8 points, p = 0.011). According to the regression model, the sex effect was statistically significant in eight scales; the effect of increasing age had a statistically significant effect on seven of the 15 EORTC QLQ-C30 scales. The sex- and age effect varied in its direction across the various scales. The presence of health conditions showed a strong negative effect on all scales.ConclusionThis is the first publication of detailed French normative values for the EORTC QLQ-C30. It aims to support the interpretation of HRQoL profiles in French cancer populations. The strong impact of health conditions on QLQ-C30 scores highlights the importance of considering the impact of comorbidities in cancer patients when interpreting HRQoL data.

Screening for Unhealthy Alcohol Use among Patients with Multiple Chronic Conditions in Primary Care

IntroductionUnhealthy alcohol use (UAU) increases risk for and exacerbation of chronic health conditions. As such, screening, prevention, and management of UAU is especially critical to improving health outcomes for patients with multiple physical or mental chronic health conditions (MCC). It is unclear to what extent multiple chronic condition (MCC) status is a barrier to screening for UAU in the primary care setting. We hypothesized that patients with MCC would be at lower odds of being screened for UAU compared with patients with no MCC. MethodsWe performed a secondary analysis of electronic health record data for patients from 67 primary care practices in Virginia (2020-2023). Using the Center for Medicare and Medicaid Services’ chronic disease framework, we classified patients by MCC status: no MCC, physical MCC (P-MCC), mental health MCC (MH-MCC), and physical & mental health MCC (P&MH-MCC). We used multiple logistic regressions with an added practice-level random effect to analyze the relationship between MCC status and odds of receiving an alcohol-related assessment, of being screened for UAU with a U.S. Preventive Services Task Force (USPSTF)-recommended instrument, and of screening positive for UAU within the past 2 years. ResultsWithin a final cohort of n= 11,789, a total of 6796 patients (58%) had MCC (29% P-MCC, 4% MH-MCC, and 25% P&MH-MCC). In all, 69% of patients were screened for UAU, while 16% were screened with a USPSTF-recommended instrument and 7% screened positive for UAU. Relative to those with no MCC, patients with P&MH-MCC had 0.9 times lower odds of receiving any screening for UAU [95% CI: (0.8, 1.0), p = 0.0240], while patients with only P-MCC or only MH-MCC had similar odds. There was no difference in odds of being screened with a USPSTF-recommended instrument based on MCC status. Patients with MH-MCC and P&MH-MCC had 1.8 and 1.5 times greater odds, respectively, of screening positive for UAU [95% CI: (1.3, 2.7), p= 0.0014) and 95% CI: (1.2, 1.8), p=0.0003)]. ConclusionAlthough patients with chronic mental health conditions were more likely to screen positive for UAU than patients without MCC, Virginia primary care patients with P&MH MCC were less likely to receive an alcohol-related assessment during the past 2 years. Given the overall modest rate of screening with a USPSTF-recommended instrument, further efforts are needed to create the conditions for high quality alcohol-related preventive service delivery in primary care, particularly for patients with high complexity and/or mental health conditions.

Digitally Mediated Relationships: How social representation in technology influences the therapeutic relationship in primary care.

Relationships, built on trust, knowledge, regard, and loyalty, have been demonstrated to be fundamental to health care delivery. Strong relationships between patients and providers have been linked to more compassionate care delivery, and better patient experience and outcomes, and may be particularly important in primary care models. The rapid adoption of digital technologies since the onset of COVID-19 has led health care systems to seriously consider a “digital-first” primary care delivery model. Questions remain regarding what impact this transformation will have on the therapeutic relationship. Using a rapid ethnographic approach this study explores how patient and provider understandings of therapeutic relationships and digital health technologies may influence relationship-building or maintenance between patients with complex care needs and their care providers. Three team-based primary care sites in Toronto, Ontario, Canada were included in the study. Across the three sites 9 patients with chronic health conditions, 1 caregiver, and 10 healthcare providers (including family physicians, family medicine residents, social workers, and nurse practitioners) participated. Interviews were conducted with all participants and 8 observations of virtual clinical encounters (phone and video visits) were conducted. Using social representation theory as a lens, analysis revealed that participants’ constructions of therapeutic relationships and digital technologies were informed by their identities, experiences, and expectations. For participants to see technologies as enabling to the therapeutic relationship, there needed to be alignment between how participants viewed the role of technology in care and in their lives, and how they recognized (or constructed) a good therapeutic relationship. This exploratory work suggests the need to think about how both patients’ and providers’ views of technology may determine whether digital technologies can be leveraged to meet patient needs while maintaining, or building, strong therapeutic relationships.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

IntroductionPatient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group...

A Mobile App Providing Individually-Tailored Psychoeducation about Sleep for Older Adults with Chronic Health Conditions and Low Health Literacy

Objective: This paper reports on a study of a mobile app that provides tailored information about sleep to individuals aged 40 and older who have chronic health conditions and low health literacy. Methods: The sleep module was a part of a multitopic app focused on chronic disease self-management. Participants were randomly assigned to receive sleep psychoeducation at reading levels equivalent to 3rd, 6th or 8th grade. The primary outcome measure was the Pittsburgh Sleep Quality Index (PSQI), which was completed at baseline, after the intervention, and again three months later. Outcomes were assessed using repeated measures mixed effects models. Results: Most participants were Black, Indigenous or Other Persons of Color (BIPOC; 87%); they had average reading level at the 7th grade. Health literacy, socioeconomic status, and number of health conditions were related to the PSQI. The PSQI score decreased over the course of the three study visits for all groups, consistent with a small to medium effect size (d = 0.40). No effect of treatment group was observed. Participants were positive about the usefulness and helpfulness of the app. Conclusion: Results suggest that a brief tailored information intervention may be beneficial for individuals aged 40 and older who have low health literacy and chronic health conditions. Further development of the intervention may enhance its clinical effectiveness

A Mobile App for Chronic Disease Self-Management for Individuals with Low Health Literacy: A Multisite Randomized Controlled Clinical Trial

The purpose of this study was to evaluate the effects of a mobile app designed to improve chronic disease self-management in patients aged 40 years and older with low health literacy and who had at least one chronic health condition, and to assess the impact of delivering information at different levels of reading difficulty. A randomized controlled trial was completed at two sites. Individuals aged 40 years and older screened for low health literacy who had at least one chronic health condition were randomly assigned to a tailored information multimedia app with text at one of three grade levels. Four primary outcomes were assessed: patient activation, chronic disease self-efficacy, health-related quality of life, and medication adherence. All groups showed overall increases in activation, self-efficacy, and health-related quality of life, but no change in medication adherence. No between-group differences were observed. The mobile app may have been effective in increasing participants’ levels of several psychosocial variables, but this interpretation can only be advanced tentatively in light of the lack of control-experimental group differences. Reading difficulty level was not significantly related to outcomes.

Job Burnout, Work Health Management Interference, and Organizational Health Climate Among Employees with Varied Levels of Work Ability.

The presence of chronic health conditions (CHCs), without sufficient personal and job resources, can impede one's ability to effectively perform work tasks and manage job demands. The aim of this study was to evaluate the level of job burnout and perceptions of work health management interference (WHMI) and organizational health climate (OHC) among employees with varied levels of work ability (WA). We also examined relationships among these variables and with sociodemographic and job-related variables (e.g., age, number of physician-diagnosed conditions). A convenience sample of 878 adults living and working in the United States who responded to a recruitment message via professional listservs/email lists and social media participated in a non-experimental, cross-sectional online survey. Participants reported sociodemographic and job-related items, as well as measures to evaluate WA, burnout, WHMI, and OHC. Statistically significant differences in burnout, WHMI, and OHC were observed across WA groups. Workers with poor WA reported the highest levels of overall burnout, WMHI, and the least supportive OHC. A more supportive OHC was associated with lower burnout. A strong inverse relationship between WA and the number of physician-diagnosed conditions was observed; weak relationships between WA and age, as well as WA and managerial status, were found. Employees with lower levels of WA tended to report higher levels of burnout and WHMI and lower levels of OHC. Findings provide a foundation for future research to examine causal relationships among these variables and to inform actions to both preserve WA and support worker well-being.

Psychological distress and mental health care utilization among Black survivors of adolescent and young adult cancer.

Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. National Health Interview Survey data (2010-2018) were analyzed that identified non-Hispanic Black (hereafter, Black) survivors of AYA cancer and age- and sex-matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR],1.64; p<.001), use mental health care (OR,1.53; p=.027), report an inability to afford mental health care (OR,3.82; p<.001), and use medication for anxiety and/or depression (OR,2.16; p=.001). Forty-one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18-39 years (vs. 40-64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population.

P092 Empowering Parents: Navigating the Healthcare Journey as Nurses, Pharmacists, Therapists, Educators, Psychologists and Partners

Abstract Background/Aims The role of a parent changes when children and young people get diagnosed with a chronic health condition. Understanding these new responsibilities in terms of roles can be helpful. Nurse (daily assessment), pharmacist (administering many routes of treatments), dietician (monitoring, preparing, administering diet), physiotherapist (therapy interventions), teacher (disease education, adherence), advocate (school conversations, disability benefits), taxi driver (attending appointments) and psychologist (support, counselling). Embedding these roles successfully with their own health needs, employment and family life, can be challenging. Methods Inviting parents and carers to help design a study to improve our support of parents has led to some powerful insights. The NIHR funded IMPACT study aims to design, develop and test an intervention to support parents of children and young people with rheumatological conditions. Parents and carers were invited to join a group through discussions during clinical care. A group of 30 parents, carers and young people initially met together virtually as a Patient and Public Involvement and Engagement Group for the IMPACT study (PPIE). Meeting parents and carers separately to the children and young people soon became important to enable parents to talk about their experiences of being a caregiver with open and honest discussion, importantly without feeling guilty. Results Parents experienced ‘guilt’ from many perspectives, but predominantly, guilty for talking about their own feelings when it is their child’s illness and guilt for putting their child through painful interventions. Parents talked about how because they were not the ones with the illness, they often did not feel able to ask questions that they had of health care professionals. For example, when a parent accompanies a young person to an appointment, they cannot often ask about whether this medication would work this time, about the possibility of certain side effects or about the risk of malignancy, as asking about these in front of their adolescent could plant worries and concerns that they might not currently have. Whilst the multidisciplinary nature of paediatric rheumatology is often celebrated, this means that parents naturally adopt these roles themselves between appointments. Parents described how their role changed and they “weren’t just a parent anymore”. For example, as parents they want to administer therapies to children at home for many reasons (keeping them out of hospital, taking control), but this means they take on new roles and responsibilities and then cause pain and suffering to their child, the child that they should be protecting from pain and suffering. This then causes guilt. Conclusion This work explores some of these factors in further detail and offers to all health-care professionals an insight into the multifaceted role of a parent of a chronically ill child and offers suggestions to improve upon some of these. Disclosure P. Livermore: Grants/research support; NIHR Fellowship.

P042 The impacts of rheumatic diseases in the workplace and employment

Abstract Background/Aims Patients with rheumatic and musculoskeletal conditions report a range of impacts on their personal life, family, education and employment. Whilst reasonable adjustments are required in law to provide sufficient support to people with chronic health conditions, these are not always forthcoming or adequate to mitigate the impacts of disease on employment. This collaborative study between three patient organisations explored the impact of disease on employment in a UK population. Methods Adults in the UK aged 18+ who had any diagnosis of a musculoskeletal or rheumatic condition were invited to complete an online survey. Respondents provided information about their diagnosis, experiences and attitudes across a range of themes and topics, including work and employment. Results In total, 532 respondents completed the survey (64% female; 68% White ethnicity). Overall, 371 (77%) reported that their arthritis affected them at work or in their daily duties and responsibilities, with a higher proportion of females experiencing this (82% compared to 65% of males, p&amp;lt;.001). The majority reported fatigue (75%) and impacts on their ability to do household chores (63%), and around a third had their choice of job limited (33%) or have had to reduce their working hours (30%) due to their arthritis, and 29% found their arthritis has not been recognised in employment. Overall, 16% reported their employer was not supportive when they needed to attend medical appointments, and 53% had found their arthritis affected them financially through having to reduce their hours at work, taking unpaid time off, paying to travel to appointments, paying for their prescriptions, or other reasons. Conclusion Arthritis brings a substantial burden to patients, including in their access to, and experiences of, the workplace. Whilst many patients have developed their own ways to circumvent the barriers they experience (such as choosing employment that is more accessible to them, reducing hours, or changing roles), these choices can impact them financially. Increased awareness of the impacts, and improved understanding, amongst employers, coupled with better support for patients to access employment and for employers to access support and guidance, may help reduce barriers and improve experiences for patients with arthritis. Disclosure R.P. Beesley: None. R.M. Beesley: None. K. Middleton: None. A. McBride: None.