Illness Intrusiveness Research Articles

Living From Test to Test: A Concept Analysis of CA-125 Preoccupation in Ovarian Cancer Survivorship

Background: Ovarian cancer has a high risk of recurrence and is rarely curable. One method for monitoring recurrence is trending Cancer antigen 125 (CA-125) levels. However, treatment based on rising CA-125 levels is controversial, often contributing to anxiety and an excessive focus on test results, described as “CA-125 preoccupation.” Objective: To present an analysis on the concept of CA-125 preoccupation. Methods: Rodgers’ method of evolutionary concept analysis was used to evaluate the attributes, antecedents, and consequences. PubMed, Medline, PsycINFO, and CINAHL electronic databases were searched. Results: Antecedents include a diagnosis of ovarian cancer that necessitates CA-125 surveillance, awareness of CA-125 as a tumor marker, and perceived disease status. Attributes include psychosocial symptoms characterized by a fixation with CA-125 levels and symptoms of anxiety, depression, distress, and illness intrusiveness that present in a cyclical pattern. Consequences include urgency to treat rising levels and surveillance and survivorship care preferences. Conclusions: CA-125 preoccupation is characterized by psychosocial symptoms that present in a cyclical and dynamic state akin to living “test to test” or feeling suspended in a perpetual cycle of tests, driven by a desire to feel relief or prompt action. Implications for Practice: Nurses are poised to influence the patient’s experience through identification of the presence of CA-125 preoccupation and its consequences. Understanding the antecedents and attributes of CA-125 may assist with identifying women who are most at risk. What is Foundational: This research presents the first known conceptual definition of CA-125 preoccupation, which may lead to validated survey measures and improved survivorship care.

Cognitive and affective links between childhood adversity and psychological adjustment in emerging adults with chronic medical conditions.

Childhood adversity has been linked to poor psychological adjustment and decreased emotion regulation (ER) abilities. The extended process model of ER outlines the pivotal role of cognitive appraisals in the generation and expression of emotion as well as the pursuit of ER. The aim of the current study is to examine whether illness-related cognitive appraisals (i.e., illness uncertainty and illness intrusiveness) and emotion dysregulation serially mediate the relationship between childhood adversity and psychological adjustment for emerging adults with chronic medical conditions (CMCs). Participants included 557 undergraduate college students (Mage= 19.53 years, SD = 1.34) enrolled in a Midwestern public university with self-reported CMCs. Participants completed measures of adverse childhood experiences (ACEs), illness uncertainty, illness intrusiveness, emotion dysregulation, anxious symptoms, and depressive symptoms. A path analysis was conducted examining ACEs → cognitive appraisals (i.e., illness uncertainty, illness intrusiveness) → emotion dysregulation → depressive and anxious symptoms. The overall model was significant and predicted 63.5% of the variability in anxious symptoms and 60.2% of the variability in depressive symptoms. All anticipated direct and indirect paths were significant. The current study indicates that greater childhood adversity is indeed associated with negative appraisals of one's CMC, such as greater perceived uncertainty and intrusiveness. Negative illness-related cognitive appraisals thus may limit one's ability to effectively employ adaptive strategies to regulate emotions, which could contribute to greater depressive and anxious symptoms.

Persian version of the Short Health Anxiety Inventory (SHAI) for patients with cancer: Evaluation of psychometric properties, factor structure, and association with related constructs

ObjectiveThis study aims to evaluate the psychometric properties of the Short Health Anxiety Inventory (SHAI=short health anxiety inventory) in a sample of patients diagnosed with cancer. Factor structure, internal consistency, convergent validity, and gender differences in SHAI scores were assessed. Methods202 patients diagnosed with cancer participated, with 18 questionnaires excluded for incomplete data. Confirmatory Factor Analysis was conducted to confirm the factor structure. Internal consistency was also assessed using Cronbach's alpha. ResultsA two-factor model (thought intrusion and fear of illness) provided the best fit for the data (SBχ2 (64) = 114.346, p < 0.001, CFI = 0.944, GFI = 0.908, RMSEA = 0.065). Internal consistency was high for the SHAI total score (α = 0.864) and its subscales (thought intrusion: α = 0.753; fear of illness: α = 0.825). Female patients also scored significantly higher than male patients on the SHAI total score (U = 5232.500, p = 0.012), thought intrusion subscale (U = 5189.00, p = 0.008) and fear of illness subscale (U = 5069.500, p = 0.018). ConclusionThe SHAI demonstrates adequate psychometric properties for assessing health anxiety in cancer patients.

Whole Day Workload: Evaluation of a New Outcome Measure in Occupational Therapy for Adults With Type 1 Diabetes.

Typical whole day workload is a metric with potential relevance to the occupational balance and well-being of individuals with chronic conditions. To examine the reliability and validity of using multiple daily NASA Task Load Index measures (whole day TLX) as an indicator of typical whole day workload experienced by adults with Type 1 diabetes (T1D). Participants with T1D completed cross-sectional measures and 2 wk of ecological momentary assessments (EMA) and daily diaries. Reliability was assessed across subgroups (e.g., workers vs. nonworkers); validity was evaluated with multilevel confirmatory factor analysis and with tests of convergent and divergent validity with patient-reported outcomes and blood glucose measures. Three outpatient endocrinology clinics in the United States. Data from 164 U.S. adults with T1D (42% Latino, 30% White). Measures used included the whole day TLX (assessed via 2 wk of daily diaries), time in target blood glucose range (assessed with a continuous glucose monitor), illness intrusiveness (measured cross-sectionally), and stress (measured cross-sectionally and with EMA). Number of days required for at least 0.70 reliability of the average whole day TLX ranged between 2 and 6 days depending on the subgroup. Results supported convergent and divergent validity of the average of the whole day TLX, including associations with average stress (r = .63, p < .001) and time in target blood glucose range (r = -.25, p = .002). The whole day TLX was a reliable and valid indicator of typical whole day workload. Plain-Language Summary: The health management responsibilities for Type 1 diabetes can be extremely burdensome. When these responsibilities are experienced, in addition to duties such as work and caregiving, the totality of demands experienced (i.e., whole day workload) can create further issues, such as unhealthy physiological changes and interference with self-care. We tested the psychometric properties of a measurement tool that assesses the typical level of workload people experience. This measure, referred to as the NASA Task Load Index (whole day TLX), was found to be a reliable and valid indicator of typical whole day workload. Occupational therapists may use the whole day TLX to track progress in interventions focused on reducing clients' whole day workload exposure to promote their health and well-being. Occupational therapists' expertise in areas such as activity analysis, task adaptation, and energy conservation makes them especially well-suited to intervene on whole day workload.

Contextualizing Measurement: Establishing a Construct and Content Foundation for the Assessment of Cancer-Related Dyadic Efficacy.

This paper illustrates a rigorous approach to the initial phases of scale development when evaluating an existing construct, dyadic efficacy, in a new population. Cancer-related dyadic efficacy represents a couples' confidence in their conjoint abilities to manage the effects of cancer. Two samples of individuals diagnosed with cancer and their partners, along with a professional panel, contributed lay and content expertise, respectively. Thematic analysis was used to describe cancer-related dyadic efficacy and identify content domains. Cancer-related dyadic efficacy was conceptualized as multidimensional, consistent with relational functioning, and distinct from self-efficacy. A pool of 50 items was developed to assess eight content domains grouped into three main themes: dyadic efficacy for managing (a) illness intrusions, (b) emotional responses and (c) communication and care for children. This paper responds to calls for more rigorous reporting of the qualitative procedures required to establish a conceptual grounding for a new scale.

The role of dog therapy in clinical recovery and improving quality of life: a randomized, controlled trial

BackgroundAny illness places a significant burden on patients, including deterioration in quality of life. Animal assisted therapy may be helpful in the rehabilitation process and in the treatment of patients to alleviate this phenomenon.MethodsA randomized, controlled research was conducted in 2019 and 2020 in a rehabilitation center in Budapest. In our study, the control and experimental groups received the same therapy, but the rehabilitation treatment of the intervention group was complemented by dog therapy. Patients were evaluated by means of the short form Beck Depression Inventory, State-Trait Anxiety Inventory, Illness Intrusiveness Ratings Scale, Visual Analog Scale for pain and the WHO-5 Well-being Index. For statistical analysis paired T-test and ANCOVA was performed.Results58 participants in both groups took part in the research. Results confirm that both groups showed statistically significant improvement in all outcome measures, except for depression symptoms in dog therapy group. Quality of life of the participants improved significantly, their pain and anxiety levels were significantly reduced, they felt significantly less burdened by the disease in their daily lives. Therapeutic-dog sessions had a large effect on patients’ quality of life and anxiety.ConclusionsThere is a strong case for animal assisted therapy as a complementary therapy in the rehabilitation program, and it is proposed that consideration should be given to the application of this method on a larger scale within health care. The study was retrospectively registered at ISRCTN Registry (registration number: ISRCTN10208787) on 15/03/2022.

Randomized Controlled Trial of Occupational Performance Coaching for Adults With Multiple Sclerosis

ObjectiveTo determine if the receipt of occupational performance coaching (OPC) by adults living with multiple sclerosis (MS) improves participants’ satisfaction with performance in daily activities (primary outcome); improves perceived performance in daily activities, resilience, autonomy, and participation; and reduces illness intrusiveness and effect of MS (secondary outcomes). DesignTwo-group randomized clinical trial with a waitlist control. SettingCommunity. ParticipantsConvenience sample of adults with MS were recruited through a research registry. Eighty-three individuals were approached; 35 were assessed for eligibility and 31 were enrolled and 30 completed baseline assessment (Final sample size, N=30). Participants were English-speaking, were without serious cognitive impairment or severe depression, and were not receiving other coaching interventions. InterventionsSix telephone sessions of OPC were delivered by a trained facilitator over 10 weeks. Initial sessions focused on goal setting, prioritization, and action planning. Subsequent sessions involved goal and action plan review, discussion of facilitators and barriers, and goal and plan refinement. Main Outcome MeasuresPrimary outcome was participants’ satisfaction with performance in daily activities, as measured by the Canadian Occupational Performance Measure (COPM). Secondary outcome measures included the COPM performance rating, Connor-Davidson Resilience Scale, Impact on Participation and Autonomy Questionnaire, Adapted Illness Intrusiveness Rating Scale, and MS Impact Scale. Measures were administered by a blinded assessor at baseline, 10 weeks, and 2 months. ResultsParticipants in the intervention and waitlist control groups were equivalent on demographic and outcome measures at baseline. At 10 weeks, the intervention group had significantly higher COPM ratings for both satisfaction (P<.001) and performance (P=.002). No other outcomes were significantly different. For the intervention group, the benefits of OPC were maintained at 2 months. ConclusionsOPC led to improved satisfaction with performance and performance in daily activities. Future research with a larger sample is needed to determine other effects and who benefits most from OPC.

Abstract PO2-20-01: The STOP-HER2 Trial: A Phase 2 Study of Stopping Trastuzumab - Outcomes in Patients with HER2+ Metastatic Breast Cancer (TBCRC 062)

Abstract BACKGROUND: Anti-HER2 therapies have transformed the trajectory for patients with HER2-positive (HER2+) MBC. A subset of patients with HER2+ MBC do exceptionally well and remain on maintenance anti-HER2 therapy for many years. However, current therapy is non-curative and patients are treated indefinitely. While these therapies often are well-tolerated, they may cause significant toxicities, are expensive, and typically require frequent infusion and provider visits. Case reports and retrospective series demonstrate that some patients may do well after stopping anti-HER2 treatment. We currently lack prospective data on the likelihood of clinical impact of successful treatment discontinuation, outcomes among patients who progress and restart HER2-directed therapy, and tools to predict who may safely stop therapy. In this study, we will enroll pts with an exceptional response to anti-HER2 therapy. Pts may elect to either continue or stop anti-HER2 therapy and will be followed clinically and radiographically on a protocol-specified schedule. Considering the central role of patients in choosing the study intervention arm, and the unique nature of stopping therapy as a treatment intervention, patient advocates have been deeply involved in the study design to ensure patient concerns are being heard and addressed. We will retrospectively assess minimal residual disease (MRD), measured in plasma, as a biomarker of ongoing response, in a step toward shifting the treatment paradigm for pts with HER2+ MBC. METHODS: STOP-HER2 is a prospective, non-randomized, phase II, multicenter study of either continuation (cohort 1) or cessation (cohort 2) of anti-HER2 therapy in exceptional responders with HER2+ MBC. Eligible patients must have biopsy-proven HER2+ MBC by ASCO/CAP guidelines and must have been receiving first-line anti-HER2 therapy for MBC for at least 3 years without evidence of progressive disease (PD) as determined by the treating investigator. Patients with prior brain-only PD or oligo-PD outside the brain are eligible at least 2 years after local treatment to the central nervous system (CNS) and in absence of subsequent PD. Up to fifty-two participants will be enrolled into cohort 2, and an additional thirty participants enrolled into the cohort 1, at 10 US sites within the Translational Breast Cancer Research Consortium. Co-primary endpoints are the 1-year progression-free survival (PFS) in cohorts 2 and 1, separately. Secondary endpoints include the clinical benefit rate upon re-initiation of anti-HER2 therapy for patients in cohort 2 experiencing PD after treatment discontinuation; and 3-year overall survival in both cohorts. Correlative endpoints include MRD status at baseline and the correlation between MRD dynamics and outcomes. Patient-reported outcomes will be collected and analyzed, including quality of life, illness intrusiveness, financial toxicity, anxiety, and decision regret. The study will use a two-stage design to assess the primary objective of estimating the rate of participants who are free of progression at one year after discontinuing anti-HER2 therapy. If 50% or less are free of progression at one year, stopping HER2 therapy would not be considered a viable treatment plan (null hypothesis). The study is designed to have 80% power to reject the null hypothesis at the 10% type I error rate when 68% of exceptional responders are free of progression at one year after stopping HER2 therapy. STOP-HER2 began enrollment in Q2 2023 (NCT05721248). Citation Format: Heather Parsons, Kathryn Ruddy, Stefania Morganti, Karen Smith, Victoria Attaya, Eliza Kallfelz, Michelle DeMeo, Jamie LaScala, Shirley Mertz, Teri Pollastro, Patricia Spears, Adam Brufsky, Chau Dang, Susan Dent, Ahmed Elkhanany, WIlliam Gwin, Ciara O'Sullivan, Kathy Miller, Sara Nunnery, Elaine Walsh, Anna Maria Storniolo, Sara Tolaney, Nabihah Tayob, Antonio Wolff, Eric Winer, Mothaffar Rimawi, Ian Krop, Nancy Lin. The STOP-HER2 Trial: A Phase 2 Study of Stopping Trastuzumab - Outcomes in Patients with HER2+ Metastatic Breast Cancer (TBCRC 062) [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-20-01.

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 Uncertainty and Intrusiveness in Adolescent and Young Adult Women with Self-Reported Chronic Migraines

ABSTRACT Background Chronic migraines result in debilitating pain requiring complex and multifaceted daily management, including acting purposefully to attenuate symptoms and decrease impairment. Experiencing migraines may be more psychologically challenging for adolescent and young adult (AYA) women due to complex and recurrent stressors. Purpose This study examined the relationships between illness specific cognitive appraisal mechanisms (i.e., illness uncertainty and illness intrusiveness) and psychological adjustment (i.e., anxious and depressive symptoms) in AYA women with self-reported chronic migraines. Methods AYA women (N = 74, Mage = 20.19, SD = 3.41) with chronic migraines completed measures of illness uncertainty, illness intrusiveness, anxious, and depressive symptoms. Results Two hierarchical regression analyses indicated that illness uncertainty (B = .44, p < .001) and intrusiveness (B = .27, p = .026) significantly predicted anxious, F(4, 68) = 12.83, p < .001, and depressive symptoms, F(4, 68) = 8.48, p < .001, B = .31, p = .021 and B = .27, p = .037. Discussion Greater illness uncertainty and illness intrusiveness were associated with greater anxious and depressive symptoms. Thus, it may be that AYA women who experience chronic migraines have increased perceptions of ambiguity, unpredictability, and disruption to their life that significantly contribute to their psychological adjustment outcomes. Translation to Health Education Practice This study demonstrates a need for health education on the role of illness related cognitive appraisal mechanisms for AYA women with chronic migraines. A AJHE Self-Study quiz is online for this article via the SHAPE America Online Institute (SAOI)http://portal.shapeamerica.org/trn-Webinars

Illness intrusiveness, health locus of control, and anxiety symptoms among veterans with congestive heart failure.

Disease severity, illness intrusiveness, and health locus of control (HLC) each contribute to psychosocial wellbeing in patients with congestive heart failure (CHF). To better understand the relationships between these variables regarding anxiety symptoms, we analyzed data from 116 adult male veterans with comorbid CHF and anxiety. Results suggested that illness intrusiveness significantly mediated the relation of CHF severity to anxiety symptom severity, and that the illness intrusiveness domains of physical well-being/diet, work/finances, and other aspects of life (religious/spirituality, community/civic, self-improvement/expression) were also significant mediators of that relationship. The relation of illness intrusiveness to anxiety was not moderated by internal HLC. Findings highlight the importance of assessing and treating various aspects of illness intrusiveness to manage anxiety symptoms in CHF patients.

Sexuality in Endometriosis: Preliminary Data on Pain Malevolence and Illness Intrusiveness

Endometriosis has a major impact on women's sexual health, lessening fertility and causing pain and reduced sexual desire in at least 50% of patients. This article investigates the relationship between infertility and sexual intercourse concerns and illness intrusiveness. Since both pain and illness can be interjected as malevolent internal objects, we also looked at the mediating effect of pain representation as a malevolent object on those relationships.

The contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in pediatric inflammatory bowel disease.

Clinical disease activity associated with inflammatory bowel disease (IBD)can place physical limitations on youths' activities of daily living. In turn, functional limitations potentially contribute to youths' heightened experience of IBD-induced intrusions on a wide range of routine and valued activities (i.e., illness intrusiveness), which can increase their risk for depressive symptoms. The present study examined the contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in youth with IBD. Youth (N = 180) completed the Functional Disability Inventory (FDI),Illness Intrusiveness Scale-Child (IIS-C),and Children's Depression Inventory-2 (CDI-2).Physicians completed the Physicians Global Assessment of disease activity (PGA). Results revealed a mediating effect for functional disability in the association between disease activity and depressive symptoms (PGA → FDI → CDI-2);illness intrusiveness mediated the association between functional disability and depressive symptoms (i.e., FDI → IIS-C → CDI-2).Serial mediation revealed that clinical disease activity conferred an indirect effect on youth depressive symptoms through the sequential effects of functional disability and illness intrusiveness (i.e., PGA → FDI → IIS-C → CDI-2). Taken together, these findings indicate that youth who encounter more physical limitations as a function of clinical disease activity are more likely to experience an amplified sense of IBD-related intrusions on their ability to participate in meaningful activities. In turn, heightened illness intrusiveness increases the likelihood of depressive symptoms. Clinical interventions that help youth maintain adequate functional ability in the face of IBD disease activity and encourage involvement in positively valued activities could decrease the negative impact of IBD on youths' emotional adjustment.

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.

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.

Loneliness and Its Predictors in Rare Versus Common Chronic Illnesses.

Loneliness is a growing public health concern associated with substantial negative mental and physical health outcomes. Loneliness is especially relevant for individuals with a chronic illness, perhaps more so if their illness is rare. Little is known about the psychosocial experience of individuals with a rare chronic illness, and whether and how it may differ from the experience of individuals with common chronic illnesses. We compared the magnitude of loneliness in persons with a rare or common chronic illness and examined theoretically guided predictors of loneliness as follows: stigma, illness intrusiveness, social comparison, social support, support from healthcare providers, and self-efficacy. Individuals with a chronic illness (common or rare) completed an anonymous online survey (N = 952). Individuals with common chronic illnesses were as lonely as those with a rare chronic illness. Loneliness in both groups was higher than that in population norms. Regression analyses reveal that independent of other predictors, loneliness was especially high among people who feel stigmatized by others, those who have less social support available, and people whose functioning is more disrupted by their illness (all p values < 0.01). The similarity of loneliness in these groups reinforces the value of further systematic research to identify the needs of individuals with any type of chronic illness. Study findings highlight the importance of examining internalized stigma and social support as possible targets of intervention to reduce loneliness among individuals with a chronic illness, recognizing some of the unique features and challenges of their disorders, whether common or rare.

Measures of treatment burden in dialysis: A scoping review.

Dialysis is a life-sustaining treatment for patients with advanced kidney failure, but it is extremely burdensome. Despite this, there are very few tools available to assess treatment burden within the dialysis population. To conduct a scoping review of generic and disease-specific measures of treatment burden in chronic kidney disease, and assess their suitability for use within the dialysis population. We searched CINAHL, MEDLINE and the Cochrane Library for kidney disease-specific measures of treatment burden. Studies were initially included if they described the development, validation or use of a treatment burden measure or associated concept (e.g., measures of treatment satisfaction, quality of life, illness intrusiveness, disease burden etc.) in adult patients with chronic kidney disease. We also updated a previous scoping review exploring measures of treatment burden in chronic disease to identify generic treatment burden measures. One-hundred and two measures of treatment burden or associated concepts were identified. Four direct measures and two indirect measures of treatment burden were assessed, using adapted established criteria, for suitability for use within the dialysis population. The researchers outlined eight key dimensions of treatment burden: medication, financial, administrative, lifestyle, health care, time/travel, dialysis-specific factors, and health inequality. None of the measures adequately assessed all dimensions of treatment burden. Current measures of treatment burden in dialysis are inadequate to capture the spectrum of issues that matter to patients. There is a need for dialysis-specific burdens and health inequality to be assessed when exploring treatment burden to advance patient care.

PERCEIVED ILLNESS INTRUSION AND FACTORS ASSOCIATED WITH PATIENTS ONHEMODIALYSIS IN ATERTIARY CARE HOSPITAL

Background/Purpose: Dialysis is a medical procedure that is very nerve-wracking as it interferes with the day-to-day activities of the patients suffering from kidney disease. Our study is aimed at finding the association between illness intrusion among patients on dialysis, the effect of duration of dialysis, and patient demographics. Materials/Methods: A cross-sectional study was conducted on 60 Chronic Kidney Disease patients who were on maintenance hemodialysis in RajaRajeswari Medical College and Hospital, tertiary care center in Bangalore, Karnataka for a period of two months. The patients were interviewed using a pre-tested and semi-structured interview schedule. Data was entered and analysed using Tableau software. The results were visualized in percentages and proportions. Results: Out of 60 patients, 42 patients were males and 95% of total patients were married. 61.7% were from urban areas and the majority (81.7%) of the patients funded their dialysis through their own/family income and 75% reported an intrusion in the area of work. Conclusion: A high percentage of people were from urban areas and very few from rural areas. Therefore, setting up Nephrology units in government hospitals would reduce the economic burden on the patient. Categories: Nephrology, Epidemiology/Public Health.

Eight Key Areas in Need of In-Depth Examination in the Field of Psychosocial Adaptation to Chronic Illness and Disability

The primary aim of this brief paper is to suggest fertile research areas that could serve to both navigate and enrich our understanding of psychosocial adaptation to chronic illness and disability (PACID). More specifically, the paper seeks to outline broadly, for future consideration, eight such areas that span a wide range of theoretical and research venues. Included are, first, PACID-associated domains based on concepts that may be regarded as predictors, as well as moderators and mediators, of PACID. These include concepts such as duration of CID, level of existing psychological energy (e.g., motivation, vigor), presence of denial, and the influence of early-in-life, single, and cumulative traumatic events. Second, consideration of concepts embedded in the adaptation process itself is offered, including personal perceptions and beliefs about CID impact, such as illness intrusion and self-identity; the nature and unfolding of personal growth following onset of CID; and more generally, the inherent veracity of models advocating imminent psychological growth following traumatic experiences, including the onset of CID.