Illness Intrusiveness Ratings Scale Research Articles

Exploratory factor analysis of the Illness Intrusiveness Rating Scale for parents of children with atypical genital appearance due to differences of sex development (DSD).

Illness intrusiveness refers to the subjective cognitive appraisal of a chronic health condition interfering in daily, valued activities and may be highly relevant for parents of children with atypical genital appearance due to differences of sex development (DSD). However, a measure of illness intrusiveness has not been validated for this population. The current study aimed to evaluate the factor structure of the Illness Intrusiveness Scale for Parents (IIS-P) and examine convergent validity. Participants included 102 parents (Mage = 33.39 years, SD = 6.48; 58% mothers) of 65 children (<2 years old) diagnosed with DSD participating in a larger, longitudinal study. Parents completed the IIS-P as well as self-report measures of stigma, and anxious and depressive symptoms. An exploratory factor analysis (EFA) was conducted. EFA results supported a 1-factor intrusiveness solution (α = .93), as well as a 2-factor solution measuring intrusiveness on daily living (α = .92) and community connectedness (α = .85). The 1-factor solution and both factors of the 2-factor solution demonstrated significant convergent validity with stigma as well as anxious and depressive symptoms. Support emerged for both 1- and 2-factor solutions of the IIS-P in parents of children with DSD. The decision to evaluate illness intrusiveness as a total score or to examine the subscales of daily living and community connectedness should be tailored to the unique aims of researchers and clinicians. Future research should conduct a confirmatory factor analysis with both 1- and 2-factor models with larger, more diverse samples of caregivers.

The comparative study of chronically ill and healthy children and adolescents in the light of their general mental health

Children's hospitalisation is difficult for the family and the immediate environment. In these cases, the provision of psychological support is particularly important. Chronically ill children who are regularly hospitalised are in a particularly difficult situation, often feeling vulnerable. Our research aims to explore and analyse in detail the psychological state, attitudes and mental health of chronically ill children and to compare patient groups (children receiving care in pulmonology, gastroenterology, onco-haematology and rehabilitation) to understand the interacting factors, which may be of great importance for quality patient care and for measures to improve patient care in the future. We studied chronically ill children (N = 107) aged 10 to 18 years (M = 14.3; SD = 2.0), cared for by the Department of Paediatric Rehabilitation, Paediatric Psychiatry and Psychosomatics of the University of Debrecen Clinical Centre, the second largest paediatric institution in Hungary. In our survey, sociodemographic questions, the Connor–Davidson Resilience Scale, the Satisfaction With Life Scale, the Cantril Ladder, the Non-Productive Thoughts Questionnaire, the Problematic Internet Use Questionnaire, the Drawing version of Pictorial Representation of Illness Self-Measure (PRISM-D), the Beck Depression Inventory—Shortened Scale, the Illness Intrusiveness Ratings Scale, the Spielberger State-Trait Anxiety Questionnaire—Child Version and the Strength and Difficulty Questionnaire were applied. One-way analysis of variance (ANOVA) was used to examine differences between groups, and Pearson rank correlation analysis was used to measure the relationships between individual variables. The results show significant differences between patient groups in terms of resilience, depression, nonproductive thoughts, problematic internet use, anxiety and coping, but no consistent pattern in the development of scores. In addition, for some psychological correlates, the role of sociodemographic background also showed significant results. The practical utility of our study is that using questionnaire methods to map patient satisfaction, compliance, and patient attitudes will provide regarding the factors that influence the mental health status of children living with chronic illnesses. In the light of this, additional methods and tools can be included to improve the quality of healthcare and to develop a set of procedures that will serve the intended purpose.

Illness Intrusiveness Ratings Scale: Translation, Reliability, and Validation Study of the Turkish Version

The “İllness Intrusiveness Ratings Scale (IIRS)” is a useful, easy-to-apply tool that measures the degree of illness-induced disruptions in the 13 different aspects of life. The main aim of this study is to examine the validity and reliability of the Turkish version of IIRS and provide a new tool to investigate the impact of chronic illnesses in the Turkish population. A total of 376 patients with hypertension, diabetes, and/or osteoarthritis were recruited in this study. Patients completed the survey that consisted of the sociodemographic data, the Turkish translation of the IIRS, and the World Health Organization Quality of Life-Brief Form. The exploratory factor analysis yielded a three-factor structure, “instrumental,” “intimacy,” and “relationship and personal development,” which accounted for 59.9% of the total variance. Confirmatory factor analysis verified the three-factor structure. The IIRS was inversely correlated with the physical, psychological, and social health domains of quality of life. Our findings corroborate the reliability and validity of the Turkish version of the Illness Intrusiveness Ratings Scale. It can be used by healthcare practitioners to measure the illness-induced disruptions of lifestyles, activities, and interests.

Physical Activity and Life Stress Are Associated With Illness Intrusiveness in Persons With Multiple Sclerosis

ObjectivesTo explore which modifiable lifestyle behaviors contribute to illness intrusiveness in persons with multiple sclerosis (MS). DesignCohort study. SettingCommunity-based comprehensive MS center. ParticipantsAdults with MS (N=154) who completed an online battery of self-report questionnaires. InterventionsNot applicable. Main Outcome MeasuresIllness intrusiveness was measured with the 13-item Illness Intrusiveness Ratings Scale. Lifestyle behaviors were measured using the respective components of the Simple Lifestyle Indicator Questionnaire (ie, Diet, Physical Activity, Alcohol, Smoking, and Life Stress) and self-reported body mass index (BMI). ResultsAfter controlling for age, race, sex, disease duration, and level of physical disability (“disability”), life stress was associated with greater illness intrusiveness (b=4.65, P<.001), and physical activity was associated with less illness intrusiveness (b=-0.67, P=.009). Exploratory mediation analyses revealed physical activity had an indirect effect on illness intrusiveness through disability (b=-0.39, 95% CI: -0.68, -0.16). Conversely, disability also displayed an indirect effect on illness intrusiveness through physical activity (b=0.57, 95% CI: 0.12, 1.16). ConclusionsLife stress and physical activity are 2 modifiable lifestyle behaviors that contribute to illness intrusiveness, with the latter also having an indirect effect through disability. These findings may help inform future behavioral interventions for improving health-related quality of life in persons with MS.

684-P: Momentary, Daily, and Long-Term Impacts of Diabetes on Daily Activities—The Function and Emotion in Everyday Life with Type 1 Diabetes (FEEL-T1D) Study

Introduction: While it is widely recognized that T1D can interfere with daily activities, the extent and impact of these disruptions are poorly understood. Using FEEL-T1D study data, we examined how T1D interfered with daily activities, and the association between activity disruptions, illness intrusiveness, and diabetes-related quality of life (DQoL). Methods: FEEL-T1D prompted 14 days of surveys via smartphone at 3-hr intervals 5-6x/day. At each survey, participants indicated what activity they were doing, their activity performance and satisfaction, and whether/how T1D interfered with the activity. At end-of-day, they noted activities they could not do due to T1D. At study end, participants completed the T1D and Life (T1DAL) measure of DQoL and Adapted Illness Intrusiveness Rating Scale (AIIRS). Descriptive statistics and multilevel regressions were used to identify daily activity disruptions and their associations with DQoL and illness intrusiveness. Results: Overall, 190 participants (40±14 yrs old, 54% female, 29% White, 40% Hispanic/Latinx, 31% other) completed 14,387 momentary surveys, of which 12.1% indicated activity disruptions, most often personal care (16.1% disrupted), sleep (14.6%), and housework/errands (13.4%). Participants were unable to do desired activities due to T1D on 8.2% of days, most often housework/errands (3.8% of days), work/school, personal care, and leisure (2.6% for each). Performance and satisfaction were poorer for disrupted vs. non-disrupted activities (p&amp;lt;.0001). Those with more activity disruptions had greater illness intrusiveness (p&amp;lt;.0001) and lower DQoL (p&amp;lt;.0001). Discussion: T1D-related activity disruptions are common and associated with poorer activity performance/satisfaction, more illness intrusiveness, and lower DQoL. Validating the impact of T1D on daily activities, and seeking strategies to minimize this impact, may improve QoL for adults with T1D. Disclosure E.Pyatak: Research Support; Abbott Diabetes. G.Crespo-ramos: None. R.Hernandez: None. L.T.Pham: None. J.S.Gonzalez: Consultant; Virta Health Corp. D.Spruijt-metz: None. P.Lee: None. S.Schneider: None. A.L.Peters: Advisory Panel; Abbott Diabetes, Medscape, Novo Nordisk, Vertex Pharmaceuticals Incorporated, Zealand Pharma A/S, Research Support; Abbott Diabetes, Dexcom, Inc., Insulet Corporation, Stock/Shareholder; Omada Health, Inc., Livongo. J.P.Crandall: Research Support; Abbott Diabetes. S.Agarwal: Advisory Panel; Medtronic, Consultant; Beta Bionics, Inc., Research Support; Abbott Diabetes, Dexcom, Inc. H.Jin: None. C.J.Hoogendoorn: None. Funding National Institutes of Health (1R01DK121298)

Abstract P5-08-01: Pilot study of a patient-reported outcome (PRO) measurement strategy to determine impact of screening for minimal residual disease (MRD) in high-risk breast cancer survivors

Abstract Background: Patients treated for early stage breast cancer (BC) have a 30% lifetime risk of developing metastatic disease. Numerous studies have demonstrated that dormant bone marrow disseminated tumor cells (DTCs) are independently associated with risk of recurrence and death, yet interventions targeting these cells are lacking. The PENN-SURMOUNT (Surveillance Markers of Utility for Recurrence after (Neo)adjuvant Therapy) Screening Study was launched in 2016 to screen high risk BC survivors for DTCs using bone marrow aspirate (BMA) and identify eligible DTC positive patients for clinical trials. Given the novelty of this approach, we concurrently developed and pilot tested a PRO measurement strategy to study how the screening method of BMA and disclosure of DTC results impacts early-stage BC patients. Methods: PENN-SURMOUNT is a single center prospective, longitudinal cohort study examining BM and blood biomarkers of MRD among patients within 5 years of BC diagnosis who have high risk criteria (positive axillary nodes, triple negative biology, ER+ with Oncotype Dx ≥ 25 and/or high risk Mammaprint, or pathologic residual disease after neoadjuvant chemotherapy). From May 2019 – August 2021, we recruited patients on SURMOUNT to complete PRO surveys at baseline (T0), after BMA (T1), and after disclosure of DTC results (T2). Surveys were administered in paper form initially, then electronic form starting Feb 2021. PRO survey instruments were selected through literature review, followed by consensus among multidisciplinary clinical and research experts and patient advocates. PRO measures assess recurrence distress (Quality of Life in Adult Cancer Survivors, QLACS), illness intrusiveness (Illness Intrusiveness Ratings Scale, IIRS), and decision making (Decision Regret Scale). Additional survey items assess tolerability of the BMA and patients’ risk perception and cognitive understanding after DTC results disclosure. Descriptive statistics summarize PRO survey compliance and responses at T0, T1, and T2 in the total population and the population who reported longitudinal data for T2. Results: 61 of 66 eligible patients on the SURMOUNT trial enrolled in the PRO pilot study and completed a baseline survey, of which 47 (77%) tested negative for DTCs. Mean completion rates were 0.92 at T0, 0.85 at T1, and 0.56 at T2. After electronic survey implementation, completion rates increased to 0.94 (T0), 0.97 (T1) and 0.81 (T2). At T0, 36 (59%) patients reported a high risk perception of developing BC recurrence at 5 years and 42 (69%) during their lifetime. Mean T0 recurrence distress using the QLACS subscale was 14.6 (SD 6.3) out of possible score 4-28, compared to an expected mean of 11.42 (SD 5.48) in a general survivorship population. Mean T0 illness intrusiveness was 27.3 (SD 13.9) out of possible score 13-91. At T1, approximately 85% of patients agreed that they correctly understood the purpose of the bone marrow procedure and what the procedure would entail. 44 (72%) of patients reported a maximum pain score &amp;lt;= 4 in the week post-procedure and 42 (69%) reported the BMA was same or better than expected tolerability. Exploratory subset analysis of patients with complete longitudinal data at T2 (n = 34) showed average scores of 13.4 (SD 6.0), 30.1 (SD 14.0), and 2.8 (SD 6.2) for recurrence distress, illness intrusive, and decision regret scores (scale 0-100), respectively. At T2, 26 (76%) of patients reported no decision regret for undergoing testing for DTCs; 27 (79%) reported feeling less anxious after DTC results disclosure. Conclusions: Participants of PENN-SURMOUNT perceived risk of recurrence as high. The BMA procedure was well-tolerated and better than expected among the majority of this cohort, and most did not regret having undergone BMA after DTC status disclosure. Longitudinal completion rates were low, limiting assessment of PROs at later time points, a major focus of future work in this setting. Citation Format: Tara Kaufmann, Patrick Chang, Shoshana Rosenberg, Elizabeth Frank, Brian Hobbs, Lauren J. Bayne, Isoris Nivar, Brooke L. Goodspeed, Killian M. Rohn, Emily M. Kugler, Kevin Fox, Susan Domchek, Angela Bradbury, Payal Shah, Hayley Knollman, Rachel C. Jankowitz, Igor Makhlin, Amy S. Clark, Lewis A. Chodosh, Angela DeMichele, Katherine Goodfellow. Pilot study of a patient-reported outcome (PRO) measurement strategy to determine impact of screening for minimal residual disease (MRD) in high-risk breast cancer survivors [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-08-01.

Frailty and the psychosocial components of the edmonton frail scale are most associated with patient experience in older kidney transplant candidates - a secondary analysis within the kidney transplantation in older people (KTOP) study.

Older people with end-stage kidney disease (ESKD) are vulnerable to frailty, which impacts on clinical and experiential outcomes. With kidney transplantation in older people increasing, a better understanding of patient experiences is necessary for guiding decision making. The Kidney Transplantation in Older People (KTOP):impact of frailty on outcomes study aims to explore this. We present a secondary analysis of the Edmonton Frail Scale (EFS) and its relationship with patient experience scores. The KTOP study is a single centre, prospective study, which began in October 2019. All ESKD patients aged ≥60 considered for transplantation at Imperial College Renal and Transplant Centre were eligible. Frailty was assessed using the EFS and 5 questionnaires assessed patient experience and quality of life (QoL) (Short Form-12(v2), Palliative Care Outcome Scale-Symptoms Renal, Depression Patient Health Questionnaire-9, Illness Intrusiveness Ratings Scale, Renal Treatment Satisfaction Questionnaire). The EFS was divided into 4 subdomains (psychosocial, physical function, medical status, and general health) and then compared with the questionnaire scores. 210 patients have been recruited (aged 60-78), 186 of whom completed EFS assessments. 118 (63.4%) participants were not frail, 36 (19.4%) vulnerable, and 32 (17.2%) were frail. Worse frailty scores were associated with poorer patient experience and QoL scores across all questionnaires. Severe deficits in the EFS psychosocial subdomain showed a statistically significant association with higher depression screen scores (coefficient 4.9, 95% CI 3.22 to 6.59), lower physical (coefficient -4.35, 95% CI -7.59 to -1.12) and mental function scores (coefficient -8.33, 95% CI -11.77 to -4.88) from the Short Form-12(v2), and lower renal treatment satisfaction scores (coefficient -5.54, 95% CI -10.70 to -0.37). Deficits in the physical function and medical status EFS subdomians showed some association with patient experience scores. In the KTOP study cohort at recruitment vulnerable and frail candidates reported worse QoL and patient experiences. Severe deficits in the psychosocial subdomains of the EFS showed a strong association with patient experience and QoL, whilst physical function and medical status deficits showed a lesser association. This has highlighted specific EFS domains that may be suitable for targeted interventions to improve experiences and optimise outcomes.

Pain acceptance and illness intrusiveness in low-back pain: A longitudinal study.

BackgroundIn chronic pain syndromes, acceptance of pain may be a better approach than pain control. So far, little data have been available on how pain and its acceptance affect illness intrusiveness among patients with low-back pain (LBP).ObjectiveThe present longitudinal study evaluates the impact of pain acceptance on illness intrusiveness in patients with LBP.MethodsStudy participants were asked to complete the following questionnaires during their visit (T1) at one of four diverse rheumatologic outpatient clinics, and then 2–3 months later (T2) via phone or online: Chronic Pain Acceptance Questionnaire (CPAQ), Illness Intrusiveness Rating Scale (IIRS), Roland-Morris Disability Questionnaire (RMDQ), Patient Health Questionnaire Depression subscale (PHQ9), and socioeconomic data.ResultsOne hundred and twenty-seven individuals completed the questionnaires at baseline (31 having acute, 15 subacute and 81 chronic low back pain) and 97 at follow-up. Illness intrusiveness was negatively correlated with chronic pain acceptance both at T1 (r = −0.39) and T2 (r = –0.44). Illness intrusiveness scores have not changed significantly from T1 (M = 28.59 SD = 13.08) to T2 (M = 28.24, SD = 15.76). In a multiple regression model—including pain intensity, functional status, pain acceptance, depression severity, age, sex and educational level—the independent predictors of follow-up illness intrusiveness scores were lower pain acceptance and higher depression scores.ConclusionsIn our study, patients with acute, subacute and chronic low back pain reported similar levels of illness intrusiveness. In addition, illness intrusiveness scores have not changed significantly during the 2-month follow-up period and pain acceptance proved to be a significant independent predictor of illness intrusiveness among patients with chronic low-back pain.

Anxiety and psychosocial impact during coronavirus disease 2019 in home dialysis patients.

The severe acute respiratory syndrome coronavirus (SARS‐Cov‐2) resulting in the coronavirus disease 2019 (COVID‐19) is documented to have a negative psychosocial impact on patients. Home dialysis patients may be at risk of additional isolating factors affecting their mental health. The aim of this study is to describe levels of anxiety and quality of life during the COVID‐19 pandemic among home dialysis patients. This is a single‐centre survey of home dialysis patients in Toronto, Ontario. Surveys were sent to 98 home haemodialysis and 43 peritoneal dialysis patients. Validated instruments (Haemodialysis and Peritoneal Dialysis Treatment Satisfaction Questionnaire, Generalized Anxiety Disorder 7 Item [GAD7] Scale, Patient Health Questionnaire [PHQ‐9], Illness Intrusiveness Ratings Scale, Family APGAR Questionnaire and The Self Perceived Burden Scale) assessing well‐being were used. Forty of the 141 patients surveyed, participated in September 2020. The mean age was 53.1 ± 12.1 years, with 60% male, and 85% home haemodialysis, 80% of patients rated their satisfaction with dialysis at 8/10 or greater, 82% of respondents reported either “not at all” or “for several days” indicating frequency of anxiety and depressive symptoms, 79% said their illness minimally or moderately impacted their life, 76% of respondents were almost always satisfied with interactions with family members, 91% were never or sometimes worried about caregiver burden. Among our respondents, there was no indication of a negative psychosocial impact from the pandemic, despite the increased social isolation. Our data further supports the use of home dialysis as the optimal form of dialysis.

A comparative study of perceived burden in parent caregivers of adolescents with epilepsy in a resource-restricted setting: Investigating the explanatory factors of perceived burden

ObjectiveParent caregivers often play vital roles in the care of adolescents with epilepsy (AWE) in resource-restricted settings; however, little is known about the burden borne by these parents. This study investigated the burden perceived by parents of AWE and described the explanatory factors. MethodsAn equal number (n = 121) of age- and gender-matched parent caregivers of AWE (cases) and parents of adolescents with sickle cell disease (comparison group) were interviewed with the Parent Illness Intrusiveness Rating Scale to assess disruptions in their relationships and lifestyle. Parents of AWE were assessed for psychological distress with the 12-item General Health Questionnaire, and AWE were interviewed with the Hospital Depression-Anxiety Scale. ResultsThe majority of the cases and the comparison group were mothers (76%), with mean (SD) ages of 44.11 (SD = 6.92) versus 43.59 (SD = 6.39) years, respectively. The prevalence rate of psychological distress in cases was 38%, and depressive-anxiety symptom was prevalent in 39.7% of AWE. The level of perceived burden was significant in all parent caregivers, albeit higher in cases relative to the comparison group across multiple domains, including relationship/personal development, intimacy, instrumental and global. A high level of burden in parents of AWE was predicted by a poor family financial and material support to the adolescents, increased contact hours with adolescents, psychological distress in the parent caregivers, and anxiety-depressive symptoms in AWE after controlling for cofounders. ConclusionThe study findings underscore the need for psychosocial support to bolster resilience and adaptive coping styles in parents of AWE, particularly in resource-restricted settings. A culturally sensitive interdisciplinary blueprint of locally viable actions model for psychosocial support for parent caregivers of AWE is strongly suggested. Future studies are indicated to shed more light on the modifiable risks of perceived burden, and the effectiveness of psychosocial interventions in parents of AWE.

The influence of trait mindfulness on depression in multiple sclerosis: potential implications for treatment.

This study seeks to add to existing literature on depression and illness intrusiveness in chronic disorders by examining, (1) how the perceived intrusiveness of multiple sclerosis (MS) leads to depression, (2) and the mediating role trait mindfulness plays in this relationship METHODS: Participants (N = 755) were persons with MS (PwMS) recruited through the North American Research Committee on MS (NARCOMS) registry (a larger study). Participants completed the Illness Intrusiveness Ratings Scale, the Hospital Anxiety and Depression Scale and the Mindful Attention Awareness Scale. A mediation model assessed if trait mindfulness mediates the relationship between illness intrusiveness and depression RESULTS: Illness intrusiveness predicted trait mindfulness (a = - 4.54; p < .001), trait mindfulness predicted depression (b = - .04; p < .001); there was a direct effect of illness intrusiveness on depression (c' = 2.53; p < .001) and an indirect effect on depression (ab = .17, 95% BCa CI [.10, .25]) when trait mindfulness was in the model, which represented a medium size effect, R2med = .10 [95% CI .07, .14] CONCLUSION: Trait mindfulness mediates the relationship between illness intrusiveness and depression in PwMS. Providers could provide psychoeducation on the benefits of mindfulness and mindfulness-based interventions.

P1248DOES INCREMENTAL HAEMODIALYSIS PRESERVE NATIVE KIDNEY FUNCTION? A MULTI-CENTRE FEASIBILITY RANDOMISED CONTROL TRIAL

Abstract Background and Aims Incremental HD is a method of individualising haemodialysis (HD) dose according to level of residual renal function(RRF) such that as RRF reduces, HD dose is upwardly adjusted. Retrospective data suggest potential benefit of this approach in preserving RRF, a key predictor of survival for dialysis patients. Method A randomised, intention-to-treat, multi-centre trial was designed to determine the feasibility of a future definitive trial of incremental HD to establish if this approach preserves RRF. The trial was designed to estimate effect size of potential benefit in terms of RRF. 55 patients with RRF urea clearance≥3ml/min/1.73m2 BSA and within 3 months of starting HD were randomised across 4 UK dialysis centres to either conventional 3x weekly HD for 3.5-4 hours or incremental HD. The incremental HD protocol involved initiation of HD 2x weekly after randomization and upward adjustment of HD frequency and time as RRF was lost. In the conventional HD arm, patients were dialysed to ensure Standard Kt/VDialysis&amp;gt;2.0. In the incremental HD arm, patients were dialysed to ensure Standard Kt/VDialysis+Standard Kt/VResidual Renal Function&amp;gt;2.0 so both groups were dialysed to the same urea clearance target, except that urea clearance incorporated RRF in the incremental HD arm. Follow up was for 6 months (primary outcome data) but secondary outcome data will be for 12m. Patients were withdrawn for transplant, dialysis modality change or for patient choice. The primary outcome was rate of change of RRF in the first 6 months after randomization (effect size of intervention). Recruitability, retainability, protocol adherence and rate of adverse events were also measured as a primary objective. As a secondary outcome, we determined proportion of patients with urea clearance≥2 and ≥3ml/min /1.73m2 BSA at the 6 month time point. Impact of dialysis treatment was measured using questionnaire-based assessments at baseline and 6 months. Results 26 patients were randomised to standard HD and 29 to incremental HD. Baseline demographics including age, weight, haemoglobin, blood pressure, Charleson Comorbidity Index, were not significantly different between study arms. Baseline residual renal urea clearance was 5.1 ± SD 1.8 ml/min/1.73m2 BSA in the standard HD arm and 5.72 ± SD 2.49 in the incremental HD arm. 6 months, residual renal urea clearance reduced to 2.68±SD 1.73 in the standard HD arm and 3.80±SD 1.85 in the incremental arm. In the first 6 months, 3 patients recovered to dialysis independence (standard arm=1, incremental arm=2). Slope of RRF was not significantly different between two arms (p=0.39). The proportion of patients with significant urea clearance&amp;gt;2ml/min/1.73m2 BSA at 6 months was significantly higher in the incremental HD arm (92%) compared to the standard HD arm (65%), p=0.032. Rate of major adverse cardiac events, fluid overload, hyperkalaemia, vascular access events, deaths and infections did not differ significantly between groups. There were 2 deaths in the standard HD arm (in 4025 patient days) versus 1 in the incremental HD arm in the first 6 months(4666 patient days). There was no significant difference in Clinical Frailty Score, Montreal Cognitive Assessment score, depression score (PHQ-9), Quality of Life (EQ-5D-5L) and Illness Intrusiveness Rating Scale between groups at baseline and 6m time points. Conclusion Rate of loss of RRF (slope) was not significantly different between incremental HD and standard HD arms but incremental HD was associated with significantly higher probability of retaining urea clearance&amp;gt;2ml/min/1.73m2. There was no evidence of any clinical detrimental effect of incremental HD in terms of mortality, fluid overload or hyperkalaemic events. Incremental HD does not appear to be harmful and may confer a small benefit to preservation of residual renal function. A definitive study is required to define clinical benefits further.

Toronto aortic stenosis quality of life questionnaire (TASQ): validation in TAVI patients

BackgroundAortic stenosis (AS) is a common cardiac condition whose prevalence increases with age. The symptom burden associated with severe aortic stenosis (AS) can introduce significant lifestyle disruptions and if left untreated can lead to a poor prognosis. Quality of life (QoL) is an important consideration in these patients. The TASQ is a QoL tool that was developed for aortic stenosis patients. We evaluated the psychometric properties of this specific questionnaire in patients who underwent transcatheter aortic valve implantation (TAVI), which is a therapeutic option for patients with severe aortic stenosis (AS).MethodsThe properties of the TASQ in measuring QoL were evaluated in AS patients undergoing TAVI. Patients presenting for the TAVI procedure (N = 62) were evaluated pre-TAVI, at discharge, 1-month, and 3-month follow-ups. Demographic information as well as caregiver status, and daily activities were recorded. In addition to the TASQ, they completed the KCCQ (Kansas City Cardiomyopathy Questionnaire) and the IIRS (Illness Intrusiveness Rating Scale).ResultsThe TASQ is a 16-item self-administered questionnaire that assesses AS-specific QoL across five domains: physical symptoms; physical limitations; emotional impact; social limitations, and health expectations. TASQ subscales are internally consistent (α = 0.74–0.96) and showed significant improvements from baseline across assessments (p < 0.001). Construct validity evidence was demonstrated by correlations consistent with theoretically derived hypotheses across time points.ConclusionsThe TASQ is a brief measure of AS-specific QoL that is sensitive to change in patients undergoing TAVI. Items on the TASQ capture important QoL concerns reported by AS patients, suggesting this is a measure of relevant and meaningful outcomes for this patient population. Detection of early improvements in QoL by the TASQ is promising, with important implications for the evaluation of procedural outcomes in this population.

The Relationship Between Aspects of Resiliency and Intimacy-Related Illness Intrusiveness in Males with Multiple Sclerosis

Multiple sclerosis is a neurological condition that can have a substantial impact on well-being. In a previous study, men with multiple sclerosis exhibited significantly higher intimacy-related illness intrusiveness, even after considering age, disease severity, and depression. It was hypothesized a psychosocial intervention specific to intimacy could be beneficial; however, investigation was needed into useful strategies. This study initiated the first steps by assessing the associations between aspects of resiliency and intimacy-related illness intrusiveness in males with multiple sclerosis, and whether they could mediate the latter’s relationship with depression. Primarily recruited through the North American Research Committee on Multiple Sclerosis Registry, 156 males with multiple sclerosis were included. A subscale from the Illness Intrusiveness Rating Scale (IIRS) measured intimacy-related illness intrusiveness. Resiliency was measured with the Multiple Sclerosis Resiliency Scale (MSRS). Correlations were run between the IIRS and MSRS scores, and mediation analyses explored the MSRS’ role in the relationship between depression and intimacy-related illness intrusiveness. Intimacy-related illness intrusiveness significantly correlated with overall resilience (r = − 0.34, p < 0.01), coping strategies (r = − 0.37, p < 0.01), support from family and friends (r = − 0.22, p < 0.01), and peer support (r = 0.18, p = 0.03). There was a significant indirect effect of depression on intimacy-related illness intrusiveness through coping strategies (b = 0.24, p = 0.01), representing a medium effect (Rmed2 = 0.10). Findings are consistent with previous research using cognitive strategies to address intimacy issues in multiple sclerosis. Follow-up qualitative research may elucidate what is driving associations.

Pain-related illness intrusiveness is associated with lower activity engagement among persons with multiple sclerosis

BackgroundPain can interfere with the daily functioning of persons with multiple sclerosis (PwMS). Furthermore, beliefs about pain and activity engagement are reliably associated with persons’ experience of chronic pain. This study aimed to explore the extent to which different aspects of PwMS’ activity engagement is related to pain-related illness intrusiveness, and whether certain coping and support systems mediate that relationship. MethodsParticipants (N = 161) were PwMS with at least mild pain who were recruited electronically through the North American Research Committee on MS (NARCOMS). Pain-related illness intrusiveness was measured using a modified version of the Illness Intrusiveness Ratings Scale (IIRS). Activity engagement was assessed with Section III of the West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Correlations analyses were followed by multiple hierarchical regressions, with disability and depression symptom severity as covariates. Exploratory mediation analyses were then conducted with the subscales of the MS Resiliency Scale (MSRS). ResultsPain-related illness intrusiveness was significant correlated with activities away from home (r = −0.37, p < .001), social activities (r = −0.26, p = .001), and household chores (r = −0.16, p < 0.05). After controlling for covariates, pain-related illness intrusiveness exclusively remained a significant predictor of activities away from home. Coping strategies from MSRS mediated the effect of pain-related illness intrusiveness on activities away from home (b = −0.01, p < .05), which represents a relatively small effect (R2med = 0.07). ConclusionsThese findings highlight the influence that PwMS’ pain experience can have on engagement in activities away from home and the indirect effects of positive coping strategies on that relationship.

"I battle pain every single day": Pain-related illness intrusiveness among persons with multiple sclerosis.

Pain has been identified as a highly prevalent and common correlate of physical and emotional dysfunction among persons with multiple sclerosis (PwMS). Yet, it remains unknown how PwMS experience the intrusiveness of pain relative to other challenges associated with living with MS. This study aimed to determine the extent to which PwMS experience pain as a particularly intrusive problem among the totality of their experience of MS-related challenges and to examine how cognitive and affective factors, including resiliency, are associated with PwMS's pain-related illness intrusiveness. Participants (N = 161) were PwMS with at least mild pain who were recruited through the North American Research Committee on Multiple Sclerosis Registry for this cross-sectional study. Participants completed the Illness Intrusiveness Ratings Scale twice regarding their (a) MS and (b) pain. Multiple regression analyses were run to evaluate the relationship between MS- and pain-related illness intrusiveness, as well as the cognitive and affective predictors of the latter. Controlling for level of disease severity, pain-related illness intrusiveness was a significant predictor of MS-related illness intrusiveness (p < .001). Depressive symptom severity was the strongest predictor of pain-related illness intrusiveness (p < .001), followed by pain catastrophizing (p < .001). The relationship between pain-related illness intrusiveness and pain catastrophizing was mediated (med) by coping strategies (Rmed2 = .15) and support from family and friends (Rmed2 = .07), with the latter mediating pain-related illness intrusiveness's relationship with depressive symptom severity (Rmed2 = .10). (PsycINFO Database Record (c) 2019 APA, all rights reserved).

SUN-095 Patient Reported Outcome Measures Over the First Three Months of Dialysis: Interim Results from the Multidisciplinary Assessment at Dialysis Entry (MADE) Study

Patient reported outcome measures (PROMs) assess outcomes of importance to patients. They include measures of a patients’ health or health care from the patient’s perspective. The benefits of measuring PROMs can include identifying unmet physical and psychological need, facilitating enhanced staff/patient communication and improving the quality of care. The aim of the Multidisciplinary Assessment at Dialysis Entry (MADE) study was to identify PROMs that impact upon the quality of the patient’s illness experience in the first 6 months of dialysis in order to develop a validated tool to be embedded within standard practice. We report results from the first 3 months of data. Longitudinal descriptive design. Participants commenced dialysis (hemodialysis or peritoneal dialysis) over a 6-month period (November 2017 to June 2018) in the Central & Northern Adelaide Renal & Transplantation Service (CNARTS) in South Australia. Study approved by the health service human research ethics committee with fully informed consent. Participants completed a 169 item questionnaire within 2 weeks of commencing dialysis and completed the same questionnaire at 12 weeks following commencement of dialysis. The instrument measured: illness and symptom perception (Palliative Care Outcome Scale-Renal (IPOS-Renal) Brief Illness Perception Questionnaire (B-IPQ), Illness Intrusiveness Ratings Scale (IIRS)); psychosocial health (Depression Anxiety and Stress Scales (DASS-21), Brief COPE Inventory, Emotional Thermometer (ET)); gastro-intestinal health (Gastrointestinal Symptom Rating Scale, Bristol Stool Chart, Food Frequency Questionnaire (FFQ)); sleep (Pittsburgh Sleep Quality Assessment (PSQI)), and health literacy (Brief Health Literacy Screening tool, Morisky Medication Adherence Scale (MMAS-8)). In addition, cognitive function (Montreal Cognitive Assessment (MoCA)) and physical function measures (Grip Strength, Timed Up and Go (TUG) were performed. A patient participant focus group was formed to provide study feedback. From a population frame of 64 incident dialysis patients 43 participants were enrolled (67% response rate), 28% female, mean age 62.1 years (SD 14.4) and 37% with diabetes. 33 out of 43 participants completed the survey at 12 weeks demonstrating non-significant trended improvement in items related to shortness of breath, energy, drowsiness, appetite, itching, mobility, cognition, anxiety, bowel health, social relations, physical function, health literacy and sleep quality. There was a non-significant decline in the participants’ perceptions of developing coping strategies as measured by the COPE Scale. Study participant focus group members were positive regarding patient participation in this ESKD PROMs study. The majority of PROMs over the first 3 months of dialysis revealed non-significant improvement. Current and further analysis will contribute to the development of a more concise tool to be embedded within standard practice.

Impact of individual- and area-level race/ethnicity on illness intrusiveness among cancer survivors.

Many cancer survivors experience illness intrusion or disruption in various life domains from cancer. The socioecological model posits that individual health status is produced by the interaction of individual biology and their surrounding physical, social, and cultural environment. Despite evidence of the need to consider such hierarchical influences, little is known about the impact of area-level factors on cancer-related outcomes, including illness intrusiveness. Data from 993 breast, colorectal, and prostate cancer survivors within the first year of completing treatment were analyzed. Individual-level data for the Illness Intrusiveness Ratings Scale were linked to census tract-level data to characterize neighborhood conditions. Logistic regression modeled the association between individual-level variables, neighborhood-level racial composition, and the interaction between individual and area-level race on illness intrusiveness. A significant number of survivors (232, 23.4%) reported relatively high illness intrusiveness (score >28). The model including the interaction between area- and individual-level race exhibited significantly improved model fit (p < .05). The final model showed that racial minorities living in areas with a higher percentage of racial minorities had higher odds of greater illness intrusion when compared to Whites living in areas with a low percentage of racial minorities (adjusted odds ratio: 1.65, confidence interval: 1.01, 2.68). Results suggest that area-level factors can have profound effects on survivors' processing of their past cancer experience. Findings may support the collective resources model which posits that the effect of area deprivation is greater in certain sociodemographic groups who may find it difficult to seek resources outside of their living area.

Sex differences in predictors of illness intrusiveness in persons with multiple sclerosis

Multiple sclerosis (MS) is a complex, chronic disease that can have debilitating effects on daily activities and well-being, compromising health-related quality of life. One underlying determinant of quality of life (QOL) is perceived illness intrusiveness, which examines the disruptiveness of the condition and/or its related treatment on engagement in interest and activities, in turn affecting psychological functioning. There is evidence that persons with MS (PwMS) have higher level of illness intrusiveness compared to those with other chronic conditions; however, limited research exists on differences by sex. This study aimed to explore these possible differences between men and women, hypothesizing that men with MS will have overall higher illness intrusiveness (lower QOL) when compared to women with MS. A total of 922 PwMS were primarily recruited through the North American Research Committee on MS Registry. The participants completed a one-time anonymous online survey. Illness intrusiveness was measured using the Illness Intrusiveness Ratings Scale (IIRS) total score and three subscales. Independent t-tests determined differences in demographics, disease characteristics, and IIRS outcomes. Hierarchical regressions were then used to further assess whether sex was a significant predictor of illness intrusiveness. Men exhibited greater overall, intimacy, and relationship and personal development-related perceived illness intrusiveness. However, sex was only a significant predictor of the Intimacy IIRS subscale after accounting for age, disability, and depression. These findings highlight the intrusiveness of MS on intimacy and sexual functioning, particularly among men. Potential clinical implications and future directions are discussed.

Quality of life with conservative care compared with assisted peritoneal dialysis and haemodialysis.

BackgroundThere is little information about quality of life (QoL) for patients with end-stage kidney disease (ESKD) choosing conservative kidney management (CKM). The Frail and Elderly Patients on Dialysis (FEPOD) study demonstrated that frailty was associated with poorer QoL outcomes with little difference between dialysis modalities [assisted peritoneal dialysis (aPD) or haemodialysis (HD)]. We therefore extended the FEPOD study to include CKM patients with estimated glomerular filtration rate ≤10 mL/min/1.73 m2 (i.e. individuals with ESKD otherwise likely to be managed with dialysis).MethodsCKM patients were propensity matched to HD and aPD patients by age, gender, ethnicity, diabetes status and index of deprivation. QoL outcomes measured were Short Form-12 (SF12), Hospital Anxiety and Depression Scale depression score, symptom score, Illness Intrusiveness Rating Scale (IIRS) and Renal Treatment Satisfaction Questionnaire. Frailty was assessed using the Clinical Frailty Scale. Generalized linear modelling was used to assess the impact of treatment modality on QoL outcomes, adjusting for baseline characteristics.ResultsIn total, 84 (28 CKM, 28 HD and 28 PD) patients were included. Median age for the cohort was 82 (79–88) years. Compared with CKM, aPD was associated with higher SF12 physical component score (PCS) [Exp B (95% confidence interval) = 1.20 (1.00–1.45), P < 0.05] and lower symptom score [Exp B = 0.62 (0.43–0.90), P = 0.01]; depression score was lower in HD compared with CKM [Exp B = 0.70 (0.52–0.92), P = 0.01]. Worsening frailty was associated with higher depression scores [Exp B = 2.59 (1.45–4.62), P < 0.01], IIRS [Exp B = 1.20 (1.12–1.28), P < 0.01] and lower SF12 PCS [Exp B = 0.87 (0.83–0.93), P < 0.01].ConclusionTreatment by dialysis, both with aPD and HD, improved some QoL measures. Overall, aPD was equal to or slightly better than the other modalities in this elderly population. However, as in the primary FEPOD study, frailty was associated with worse QoL measures irrespective of CKD modality. These findings highlight the need for an individualized approach to the management of ESKD in older people.