Health Literacy and Change in Health-Related Quality of Life in Dialysed Patients

Health-related quality of life (HRQoL) is likely to deteriorate with the progression of chronic kidney disease (CKD). This change may be worsened by low health literacy (HL). We performed a longitudinal study at over 20 dialysis clinics in Slovakia (n = 413; mean age = 64.8 years; males = 58.4%). We assessed the association of three HL groups with a change in HRQoL over two years using binary logistic regression adjusted for type of vascular access, dialysis effectiveness, comorbidity, age and gender. We found that patients with low HL had poorer HRQoL at baseline in comparison to high-HL patients. We did not find significant associations of lower HL with the deterioration of mental or physical HRQoL after two years. In the adjusted model, patients with lower HL were not more likely to have deteriorated physical (low-HL patients: odds ratio/95% confidence interval: 0.99/0.53–1.84; moderate-HL patients: 0.97/0.55–1.73) or mental HRQoL (low-HL patients: 1.00/0.53–1.87; moderate-HL patients: 0.95/0.53–1.70) in comparison to high-HL patients. The HRQoL of lower-HL patients is worse at baseline but develops similarly to that of high-HL patients during dialysis treatment. Their relative HRQoL, thus, does not worsen further, but it does not improve either. Tailoring care to their needs may help to decrease the burden of low HL in dialysed patients.

Nutritional Risk and Health-Related Quality of Life in Older Adults Aging With HIV

Due to antiretroviral treatment success, individuals with HIV are living longer. People aging with HIV (PAWH, 50+) may be more likely to experience nutritional risk compared to their HIV-negative counterparts due to biopsychosocial factors. The DETERMINE checklist measure accounts for social and economic factors as well as aspects of the aging process that are not typically considered when examining nutritional risk and are important for PAWH. The current study examined nutritional risk and health-related quality of life (HRQoL) in PAWH using the DETERMINE checklist and PROMIS t-scores (mental and physical HRQoL) through secondary analyses of 158 participants in the Strengthening Therapeutic Resources in Older patients agiNG with HIV (STRONG) study. DETERMINE nutritional risk scores (0-21) were separated into 4 groups (low-risk [0-2, n=13], moderate-risk [3-5, n=28], high-risk [6-12, n=78], very high-risk [13-21, n=39]). The sample was 55% male, 94% Black/African American and had a mean age=59 (SD=5.5). Most of the sample (74%) were at high or very high nutritional risk and low HRQoL t-score: physical M=43.7 (SD=9.5), and mental M=45.7 (SD=10.1). Mental and physical HRQoL were significantly (p<.001) associated with nutritional risk group as tested through linear regressions. Means were as follows: physical HRQoL low-risk M=53.4 (SD=10.6), moderate-risk M=47.4 (SD=8.9), high-risk M=43.5 (SD=8.1), very high-risk M=38.4 (SD=8.9); mental HRQoL low-risk M=54.0 (SD=8.9), moderate-risk M=49.1(SD=7.9), high-risk M=46.1(SD=9.5), and very high-risk M=39.5 (SD=9.7). These associations remained significant after controlling for age and sex. Higher nutritional risk as measured by the DETERMINE checklist in PAWH was associated with poorer physical and mental HRQoL.

Four-Year Trajectories of Health-Related Quality of Life in People Living with HIV: Impact of Unmet Basic Needs across Age Groups in Positive Spaces, Healthy Places

Despite significant advances in antiretroviral therapy, unmet basic needs can negatively impact health-related quality of life (HRQoL) in people living with HIV, especially as they age. We aimed to examine the effect of unmet basic needs across age groups on changes in HRQoL over a 4-year period in persons with HIV. Physical and mental HRQoL scores from the Positive Spaces, Healthy Spaces cohort interviewed in 2006 (n = 538), 2007 (n = 506), and 2009 (n = 406) were examined across three age groups according to their unmet needs for food, clothing, and housing. Individual growth curve model analyses were used to investigate changes over time, adjusting for demographics, employment, living conditions, social supports, HIV status, and health behavior risks. Low scores on physical and mental HRQoL were positively associated with higher number of unmet basic needs (β = −6.40, standard error (SE) = 0.87, p < 0.001 and β = −7.39, SE = 1.00, p < 0.001, respectively). There was a slight improvement in physical and mental HRQoL over 4 years in this HIV cohort, but the burden of unmet basic needs took its toll on those over 50 years of age. Regularly assessing unmet basic needs is recommended given the impact these can have on HRQOL for people living with HIV. Recognition of unmet needs is vital, as is the development of timely interventions.

Patient-Reported Outcomes in Long-Term Survivors of Autologous Hematopoietic Cell Transplantation for Multiple Myeloma: Secondary Analysis of Two Randomized Controlled Trials on Survivorship Care Plans

Background: With advances in multiple myeloma therapy, approximately 1/3 rd of patients receiving frontline autologous hematopoietic cell transplantation (AHCT) are alive and progression-free at 8 years (Perrot et al. ASH. 2020). Although patient-reported outcomes (PROs) with induction therapy and early after AHCT are well-described, little is known regarding PROs in long-term disease-free survivors specifically in myeloma. The objective of our study was to assess health-related quality of life (HRQoL), distress, and healthcare care adherence (HCA) in myeloma survivors who are in a stable remission after AHCT. Methods: The data were obtained from two randomized controlled trials (RCTs), namely, SCP (Survivorship Care Plan) and INSPIRE (Internet and Social media Program for Long Term Hematopoietic Cell Transplant Survivors). Both RCTs enrolled patients who are in a stable remission 1-10 years after AHCT. Our primary objective was to evaluate patient-reported HRQoL, distress and HCA. The secondary objective was to examine association of PROs with available patient (age, sex, race, body mass index [BMI], and health behaviors) and transplant (time since AHCT) variables. BMI was categorized as obese (≥30), overweight (25-29.9), and normal/underweight (&lt;25). HRQoL was assessed by SF-12 v 2 as physical component summary (PCS) and mental component summary (MCS) T scores, with higher scores indicating better functioning and a general population mean of 50 (Standard Deviation [SD] 10). Distress was assessed by Cancer and Treatment-Related Distress (CTXD) instrument, which reports mean scores from 0 to 3, with higher scores indicating greater distress. A CTXD score &gt;1.10 was considered as clinically significant distress based on prior data. HCA was assessed by a standard questionnaire, with scores from 0-1, indicating the proportion of age/sex-specific recommendations adhered to. Results: A total of 345 patients were included, with the median age at AHCT of 61 years (range, 29-76). Median time from AHCT to study entry was 4 years (1.4-11.0). The mean (SD) PCS and MCS T-scores in the study population were 45.5 (±10.5) and 51.3 (± 10.1) respectively, compared to general population T-score of 50 (±10) for both (p-value for differences being &lt;0.001 and 0.021 resp.; Figure 1). The mean CTXD distress score was 0.9 (± 0.6), with 32% of patients having a score of ≥1.1, indicating clinically significant distress. The two CTXD domains with highest burden of clinically significant distress were "Health Burden" and "Uncertainty" (Figure 2). The proportion of patients who met guideline for tobacco, alcohol, exercise, sunscreen, and diet were 94%, 92%, 33%, 23%, and 13% respectively. The proportion of patients who were obese, overweight, normal weight, and underweight was 31.2%, 40.5%, 27.7%, and 0.6% respectively. On multivariable analysis (MVA), factors significantly associated with decreased PCS score were obesity (Parameter Estimate [PE]: -5.0 [±1.6]; p=0.002) and meeting alcohol guidelines (PE: -4.2 [±2.0]; p=0.039), while meeting exercise guidelines was associated with a higher PCS score (PE: 3.4 [±1.3]; p=0.007). Obesity was significantly associated with a decreased MCS score (PE: -3.0 [±1.5]; p=0.05) and meeting sunscreen guidelines was associated with an increased MCS score (PE: 3.0 [±1.4]; p=0.029). Factors associated with lower distress were years since AHCT (PE: -0.04 [±0.02]; p=0.024) and meeting sunscreen guidelines (PE: -0.21 [+/-0.8]; p=0.005). Notably, increased time since AHCT was associated with lower distress in all domains except for identity and medical demands. Better overall HCA was associated with older age (PE: 0.005 [±0.0001]; p&lt;0.001) and female sex (PE: 0.04 [±0.02]; p=0.01) on MVA. Conclusion: To our knowledge, this is the first study to characterize PROs in long-term myeloma survivors post-AHCT. Myeloma survivors have significantly worse physical HRQoL compared to general population but comparable mental HRQoL. Approximately 1/3rd are obese, with obesity being associated with worse physical and mental HRQoL. The inverse association between physical HRQoL and meeting alcohol guidelines could be secondary to abstinence from heavy drinking in those with poor physical functioning. Survivorship programs should address ongoing issues of health burden and uncertainty in myeloma survivors, encourage exercise and physical activity, and focus on groups at risk of poor HCA. Figure 1 Figure 1. Disclosures Devine: Johnsonand Johnson: Consultancy, Research Funding; Magenta Therapeutics: Current Employment, Research Funding; Orca Bio: Consultancy, Research Funding; Be the Match: Current Employment; Sanofi: Consultancy, Research Funding; Tmunity: Current Employment, Research Funding; Vor Bio: Research Funding; Kiadis: Consultancy, Research Funding. Shaw: mallinkrodt: Other: payments; Orca bio: Consultancy. Majhail: Incyte Corporation: Consultancy; Anthem, Inc: Consultancy.

The impact of demographic and clinical characteristics on the trajectories of health-related quality of life among patients with Fabry disease

Background Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by multiorgan dysfunction. Since individuals with FD usually experience progressive clinical disease manifestations, their health-related quality of life (HRQOL) is expected to change over time. However, there is limited longitudinal research examining HRQOL outcomes in individuals with FD. We aimed to: assess longitudinal outcomes in HRQOL in adults with FD; examine the physical- and mental HRQOL trajectories at the initial registration (baseline), 3–5 year, and 7–13 year follow-ups; and evaluate the possible associations of age, sex and medical complications with the physical- and mental HRQOL trajectories. Methods Forty-three individuals with FD (53% female) who were aged 18 to 81 years at baseline attended clinical follow-up visits between 2006 and 2020. Medical records were extracted retrospectively. Demographics and the 36-item Short-Form Health Survey (SF-36) were recorded at scheduled visits, except for the last data collection which was prospectively obtained in 2020. The physical (PCS) and mental (MCS) composite scores (SF-36) were chosen as outcome measures. Results The eight SF-36 domain scores were stable over a span of 13 years, and only physical- and social functioning domains worsened clinically over this follow-up period. Mean baseline SF-36 domain scores were all significantly lower (decreased HRQOL) in the FD sample compared with Norwegian population norms. Two hierarchical linear models were run to examine whether demographics and medical complications (measured at the last clinical visit) predicted physical and mental HRQOL trajectories. Age above 47 years (p < 0.001), male sex (p = 0.027), small fibre neuropathy (p < 0.001), renal dysfunction (p < 0.001), and cerebrovascular events (p = 0.003) were associated with lower HRQOL over time. No significant interactions were found between the time of follow up and the abovementioned predictors of HRQOL. Conclusions Overall HRQOL trajectories remained stable between baseline, 3–5 year, and 7–13 year follow-ups, with the majority of individuals reporting decreased physical and mental HRQOL. Medical complications in combination with older age and male sex are important predictors of lower HRQOL in FD. Awareness of this relationship is valuable both for health care providers and for patients. The findings provide indicators that can guide treatment decisions to improve physical and mental HRQOL outcomes.

Longitudinal association between physical activity and health-related quality of life among community-dwelling older adults: a longitudinal study of Urban Health Centres Europe (UHCE)

Background Physical activity (PA) may play a key role in healthy aging and thus in promoting health-related quality of life (HRQoL). However, longitudinal studies on the association between PA and HRQoL are still scarce and have shown inconsistent results. In this study, we aimed to examine the longitudinal association between frequency of moderate PA and physical and mental HRQoL. Secondly, to assess the association between a 12-month change in frequency of moderate PA and HRQoL. Methods A 12-month longitudinal study was conducted in Spain, Greece, Croatia, the Netherlands, and the United Kingdom with 1614 participants (61.0% female; mean age = 79.8; SD = 5.2) included in the analyses. Two categories of the self-reported frequency of moderate PA including 1) ‘regular frequency’ and 2) ‘low frequency’ were classified, and four categories of the change in frequency of moderate PA between baseline and follow-up including 1) ‘continued regular frequency’, 2) ‘decreased frequency’, 3) ‘continued low frequency’ and 4) ‘increased frequency’ were identified. Physical and mental HRQoL were assessed by the 12-Item Short-Form Health Survey (SF-12). Results The frequency of moderate PA at baseline was positively associated with HRQoL at follow-up. Participants with a continued regular frequency had the highest HRQoL at baseline and follow-up. Participants who increased the frequency of moderate PA from low to regular had better physical and mental HRQoL at follow-up than themselves at baseline. After controlling for baseline HRQoL and covariates, compared with participants who continued a regular frequency, participants who decreased their frequency had significantly lower physical (B = -4.42; P < .001) and mental (B = -3.95; P < .001) HRQoL at follow-up; participants who continued a low frequency also had significantly lower physical (B = -5.45; P < .001) and mental (B = -4.10; P < .001) HRQoL at follow-up. The follow-up HRQoL of participants who increased their frequency was similar to those who continued a regular frequency. Conclusions Maintaining or increasing to a regular frequency of PA are associated with maintaining or improving physical and mental HRQoL. Our findings support the development of health promotion and long-term care strategies to encourage older adults to maintain a regular frequency of PA to promote their HRQoL.

Health-related quality of life in men and women who experienced cardiovascular diseases: Tehran Lipid and Glucose Study

Background Cardiovascular diseases (CVDs) are among the most common causes of death worldwide, including in Iran. Considering the adverse effects of CVDs on physical and psychosocial health; this study aims to investigate the association between experience of CVDs and health-related quality of life (HRQoL) in adult participants of the Tehran Lipid and Glucose Study (TLGS). Methods The participants of this cross-sectional study were 7009 adults (≥ 20 years) who participated in the TLGS during 2014–2017. Demographic information and HRQoL data was collected through validated questionnaires by trained interviewers. HRQoL was assessed by the Iranian version of the SF-12 questionnaire. Data was analyzed using the SPSS software. Results The mean age of participants was 46.8 ± 14.6 years and 46.1% of them were men. A total of 9.0% of men and 4.4% of women had CVDs. In men, the mean physical HRQoL summary score was significantly lower in those with CVDs compared to those without CVDs (46.6 ± 0.8 vs. 48.5 ± 0.7, p > 0.001). In women, the mean mental HRQoL summary scores was significantly lower in those with CVDs compared to those without CVDs (42.8 ± 1.0 vs. 45.2 ± 0.5, p = 0.009). In adjusted models, men with CVDs were more likely to report poor physical HRQoL compared to men without CVDs (OR(95%CI): 1.93(1.32–2.84), p = 0.001); whereas for women, the chance of reporting poor mental HRQoL was 68% higher in those with CVDs than those without CVDs (OR(95%CI): 1.68(1.11–2.54), p = 0.015). Conclusion The findings of the current study indicate poorer HRQoL in those who experienced CVDs compared to their healthy counterparts with a sex specific pattern. While for men, CVDs were associated with more significant impairment in the physical dimension of HRQoL, women experienced a similar impairment in the mental dimension of HRQoL.

Mental and physical health, and long-term quality of life among service members injured on deployment

Background More than 52,000 casualties have been documented in post-9/11 conflicts. Service members with extremity injuries (EIs) or traumatic brain injury (TBI) may be at particular risk for long-term deficits in mental and physical health functioning compared with service members with other injuries. Methods The present study combined medical records with patient reports of mental health and health-related quality of life (HRQOL) for 2,537 service members injured in overseas contingency operations who participated in the Wounded Warrior Recovery Project. Combined parallel-serial mediation models were tested to examine the pathways through which injury is related to mental and physical health conditions, and long-term HRQOL. Results Results revealed that injury was indirectly related to long-term HRQOL via its associations with physical health complications and mental health symptoms. Relative to TBI, EI was associated with a higher likelihood for a postinjury diagnosis for a musculoskeletal condition, which were related to lower levels of later posttraumatic stress disorder (PTSD) symptoms, and higher levels of physical and mental HRQOL. Similarly, EI was related to a lower likelihood for a postinjury PTSD diagnosis, and lower levels of subsequent PTSD symptoms, and therefore higher physical and mental HRQOL relative to those with TBI. Despite this, the prevalence of probable PTSD among those with EI was high (35%). Implications for intervention, rehabilitation, and future research are discussed.

Laparoscopic Adrenalectomy Is Beneficial for the Health-Related Quality of Life of Older Patients with Primary Aldosteronism

<b><i>Objective:</i></b> Laparoscopic adrenalectomy (LADX) improves hypertension in patients with primary aldosteronism (PA). However, the antihypertensive impact of LADX appears restricted in older patients with PA. In this study, we evaluated the impact of LADX in older patients focusing on the health-related quality of life (HRQoL). <b><i>Methods:</i></b> A total of 156 patients with PA who underwent LADX in a single institution were enrolled in this prospective cohort study. The patients were divided into 2 groups, with a boundary of 60 years. The HRQoL was evaluated using the Medical Outcomes Study’s 36-Item Short-Form Health Survey version 2 (SF-36v2) questionnaire before and after LADX. Demographics, clinical features, antihypertensive drugs before and after surgery, and perioperative evaluation were recorded. We compared all scale scores and summed scores between groups. Multivariate regression models were used to determine the associations between various covariables and the HRQoL. <b><i>Results:</i></b> In the older PA patients, most subscales of HRQoL at baseline were lower than the national standard values. The antihypertensive drug-free rate by LADX was only 21% in older patients, compared to 58% in younger patients. However, a significant improvement in mental HRQoL was observed after LADX (<i>p</i> = 0.002). The much preoperative antihypertensive drugs, lower preoperative potassium level, and smaller degree of comorbidities were predictors of improved mental HRQoL by LADX on multivariate analyses. <b><i>Conclusion:</i></b> The older PA patients showed lower mental HRQOL than the national standard populations. Although antihypertensive effects were limited for these patients, LADX was beneficial as PA treatment via improvement of mental HRQoL.

#3113 Evaluating the PCL-C as a measure of trauma and PTSD symptoms in patients with functional neurological symptom disorder

AimsFunctional Neurological Symptom Disorder (FNSD) is common and disabling. Historically trauma was considered an essential aetiological factor, but the precise contribution of trauma to the disorder, and resulting disability, remains controversial. The PCL-C is a self-reported screening tool for PTSD symptoms based on DSM-IV criteria. A previous study in patients with FNSD demonstrated high scores on the PCL-C, with a reduction in scores following psychotherapy. However strong correlations with other psychological co-morbidities raised the possibility that the PCL-C may be capturing non-specific distress rather than indicators of previous traumatisation. The present study aimed to investigate (i) whether underlying factors measured by the PCL-C can distinguish specific trauma-memory-related symptoms from less specific emotion-regulation-related symptoms, (ii) the extent to which individual factors correlate with other psychopathology and health-related quality of life (HRQoL) measures and (iii) whether different factors change with psychotherapy, all in patients with FNSD.MethodsAn exploratory factor analysis of PCL-C responses from 473 FNSD patients pre-and post-psychotherapy was performed to generate1-4 factor models. The final factor model was determined through confirmatory factor analysis. Relationships between PCL-C factors, measures of comorbidities (depression, somatisation and anxiety) and HRQoL were assessed using regression analysis. Pre- and post-psychotherapy scores were compared.ResultsThe best model for the PCL-C comprised of two-factors: factor 1 (intrusive symptoms) explained 55.2% of the variance, whilst factor 2 (emotional dysregulation) explained 7.8% of the variance. Both factors reduced in severity after psychotherapy, but factor 2 reduced by more and correlated more strongly with a decrease in depression and anxiety than factor 1. Changes in depression, anxiety, somatic symptoms and mental HRQoL predicted 61.9% of the change in factor 2, but only 49.2% in factor 1. Improvements in mental HRQoL were strongly associated with a decrease in factor 2, but less so in factor 1.DiscussionThe factor analysis revealed the PCL-C represents two correlated but distinguishable symptom clusters in patients with FNSD: intrusive symptoms and emotional dysregulation. Both were elevated in our patient sample. The high level of intrusive symptoms suggests many patients with FNSD experience classical post-traumatic symptoms, which may indicate that subjective traumatic experiences contribute to pathogenesis and resulting disability. These symptoms showed some reduction with psychotherapy, but the greater reduction in emotional dysregulation symptoms and associated improvements in mental HRQoL suggest that psychotherapy may be more effective in reducing the burden of comorbidities and providing better coping strategies than in addressing core symptoms of the underlying disorder.