Subjective Burden Research Articles

Impact of lipodystrophy on health-related quality of life: the QuaLip study

BackgroundLipodystrophy is a rare disease characterized by loss of adipose tissue. Natural history studies have demonstrated significant burden of disease; however, there is limited data on the impact of lipodystrophy on quality of life (QoL) and psychoemotional well-being. The QuaLip study is a prospective observational real-world study that aims to determine the impact of lipodystrophy on QoL and psychoemotional well-being and explore subjective burden of the disease. Sixty-seven adult patients and eight pediatric patients with lipodystrophy were included. Patients were followed up for 24 months and assessments were repeated every three months. Patients were examined by licensed psychiatrists at baseline, and at year 1 and year 2 visits.ResultsEighteen (27.69%) of 65 adult patients (two subjects refused psychiatric assessment) were diagnosed with a psychiatric disorder (e.g., depressive episodes, mixed anxiety and depressive disorder, anxiety disorder, adjustment disorder, recurrent depression, panic disorder, generalized anxiety disorder, unspecified mood disorder, nonorganic sleep disorder, post-traumatic stress disorder, depressive episode comorbidity, social phobia and obsessive–compulsive disorder comorbidity). Lipodystrophy disease and QoL questionnaires revealed a significant disease burden over the study period. More than one-third of patients reported depression symptoms on the Beck Depression Inventory and more than one-fourth of the patients reported significant hunger throughout the study period. Physical appearance, fatigue, and pain contributed to the disease burden. QoL scores were lower in patients with psychiatric disease and in those with poor metabolic control. Attention deficit hyperactivity disorder, depressive disorder, sub-threshold depressive symptoms, obsessive–compulsive disorder, appetite problems, and issues with physical appearance were identified in selected pediatric subjects.ConclusionsLipodystrophy has a significant impact on QoL and psychoemotional well-being. Psychiatric disorders seem to be underdiagnosed among patients with lipodystrophy.

Care-related quality of life of informal caregivers of stroke survivors: Cross-sectional analysis of a randomized clinical trial.

We aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers' functional dependence for activities of daily living; and to identify the factors associated with caregivers' care-related quality of life. Cross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver's care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model. Of the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30-0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness. The findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression.

The impact of informal care provision on the quality of life of adults caring for persons with mental health problems: A cross-sectional assessment of caregiver quality of life.

This study assessed the quality of life of informal caregivers for individuals with mental health problems in the Netherlands. An online survey was administered to a panel of informal caregivers in June 2020 (n = 261). Informal caregivers of persons with mental problems were found to have an exceptionally low quality of life. A high subjective burden (p < .001), lower perseverance time (p = .016), low caregiver overall health status (p = .004) and psychological wellbeing (p = .008), younger caregiver age (p = .011), child caregiving responsibilities (p = .025), and no social support network (p = .038) were associated with worse quality of life scores. These findings shed light on the significant challenges faced by informal caregivers of persons with mental health problem. This raises concerns about the long-term sustainability of informal care and mental healthcare reform.

Health-related quality of life in family caregivers of autistic adults.

Family members of autistic individuals often provide support for their autistic relative throughout the lifespan which can lead to massive burden themselves. Reduced health-related Quality of Life (HRQoL) in family caregivers is assumed; however, only a handful studies on the HRQoL of family caregivers providing care to adult relatives exist as opposed to autistic children. Thus, the current study aimed to (i) investigate the current state of physical and mental HRQoL of family caregivers of autistic adults compared to the general population, and (ii) examine caregiver-related (e.g., age, subjective caregiver burden) and care recipient-related variables (e.g., symptom severity, utilization of formal services) explaining variance in the caregivers' HRQoL. N = 149 family caregivers completed a nationwide online survey, including the Short-Form Health Survey (SF-8) in order to assess the HRQoL. T-tests were used to compare the HRQoL of family caregivers with the general population. Bivariate correlational and multiple linear regression analyses were conducted in order to identify predictors explaining variance in family caregivers' HRQoL. Family caregivers of autistic adults reported significantly lower physical (M = 46.71, SD = 8.72, Cohen's d = 0.42) and mental HRQoL (M = 40.15, SD = 11.28, Cohen's d = 1.35) compared to the general population. Multiple linear regression with the mental HRQoL as the outcome showed a significant model (F(11, 95) = 5.53, p < .001, adj. R2 = .32) with increased subjective burden explaining most of the variance in mental HRQoL (ß = .32, GDW = .141, p < .001). Multiple linear regression analysis with the outcome physical HRQoL did not reveal a statistically significant model (F(11,95) = 1.09, p = .38). However, bivariate analyses also showed a positive correlation with the subjective caregiver burden (r= .20, p < .05). Findings highlight the need to consider HRQoL (and caregiver burden) of family caregivers of autistic adults in several healthcare settings to monitor a potential comprised health status in early stages, with the long-term goal to improve family caregivers' HRQoL.

Blood flow restriction reduces the increases in cardiorespiratory responses and subjective burden without inhibiting muscular activity during cycling at ventilatory threshold in healthy males

Low-intensity endurance exercise with blood flow restriction (KAATSU) is under consideration for use in cardiac rehabilitation. However, the physiological responses to such exercise have not yet been fully characterized. In an initial effort in healthy males (n = 11, age: 26.3±4.6 y), we compared the physiological responses to low-intensity endurance exercise with and without a thigh KAATSU. Participants performed maximal graded exercise testing using a cycle ergometer with or without KAATSU. We examined responses to cycling exercise at ventilatory threshold (VT) in heart rate (HR), oxygen consumption (VO2), dyspnea, ratings of perceived exertion (RPE), blood pressure (BP), and rectus femoris activation. Participants reached VT at a lower mechanical load, HR, VO2, dyspnea, and double product (HR×systolic BP) with KAATSU vs. no-KAATSU. At VT, RPE, and rectus femoris activity did not differ between the two conditions. These results suggest that KAATSU reduced exercise intensity to reach VT and the physiological responses to exercise at VT without changes in knee extensor muscle activation. Results from this pilot study in healthy males suggest that KAATSU aerobic exercise at VT intensity has the potential to be an effective and low-burden adjuvant to cycling in cardiac rehabilitation.

Influences of Weight and Weight Balance of Head-Mounted Displays on Subjective Physical Burden and Postural Risk

Influences of Weight and Weight Balance of Head-Mounted Displays on Subjective Physical Burden and Postural Risk

P123: Cognitive Disorders and Impact on Caregivers: The COGCARE Study protocol

Introduction and objectives:Dementia is associated with a high burden of disease, impacting patients, families and society. Nevertheless, related epidemiological data is becoming outdated, given the difficulties of implementing costly and laborious fieldwork surveys. Data is also difficult to retrieve from health and social services’ information systems. Overall, we must improve the feasibility and validity of case definition regarding dementia and the assessment of caregivers’ consequences. The 10/66 Dementia Research Group diagnostic algorithm is a cross-culturally valid method(1). A ‘short 10/66’ was also validated(2), but not in Portugal. We intend to assess its feasibility and validity in Portuguese samples, using REDcap (a browser-based, metadata-driven software) in mobile devices. Additionally, we aim to assess dementia family caregivers’ subjective burden and psychological distress, contrasting primary care and hospital outpatient settings.Methods:A multicentre mixed-methods study will be conducted on fifty dyads of older people with dementia and their caregivers, plus 150 dyads of ‘controls’ and their close family members, as informants. The ‘short 10/66’ will be administered. Dementia caregivers’ assessments include the Zarit Burden Interview and Self-report Questionnaire. Quantitative analyses will estimate the sensitivity and specificity of the ‘short 10/66’ dementia case definition. Semi-structured qualitative interviews will be conducted with participants and research assistants, exploring their experiences with the assessment process; thematic analysis will then be used.Implications:We expect this study to facilitate the diagnosis of dementia and data collection in health/social services on a routine basis, which will potentially improve the feasibility and decrease the costs of epidemiological surveys and allow for prevalence monitoring in Portugal.

The role of experiential avoidance and cognitive fusion in the development of anxiety symptoms among family carers of people with dementia

AbstractBackgroundDespite the high prevalence of anxiety symptoms among family carers of people with dementia (Kaddour &amp; Kishita, 2020), current carer interventions are considered to be not as effective for anxiety as they are for depression (Kishita et al., 2018). Therefore, understanding the mechanism by which a common stressor (i.e. carer subjective burden) and underlying psychological processes influence anxiety symptoms among this population is critical to inform future interventions. In this study, the roles of two psychological processes known to be associated with mental health problems were explored: experiential avoidance in caregiving (an attempt or desire to control or suppress distressing thoughts and feelings related to caregiving) and cognitive fusion (the tendency for one’s behaviour to be overly regulated and influenced by thoughts).MethodWith a sample of seventy‐seven family carers (mean age of 63.47 years (SD = 10.64) and 73% female), this study examined the indirect effect of carer subjective burden (ZBI‐12) on anxiety symptoms (GAD‐7) through experiential avoidance in caregiving (EACQ) and cognitive fusion (CFQ) using a path analysis approach.ResultThe whole sample model showed a good fit to the data. The indirect effect of carer subjective burden on anxiety symptoms through its effect on cognitive fusion (β = .17), and its combined effect on experiential avoidance in caregiving and cognitive fusion (β = .01) were significant. Examined variables accounted for 54% of the variance in anxiety symptoms.ConclusionGiven the higher explanatory value demonstrated for the indirect effect of cognitive fusion alone, facilitating cognitive fusion through psychological interventions may be critical for preventing clinically significant levels of anxiety symptoms, particularly among those carers experiencing high levels of carer subjective burden. The results also demonstrated that family carers with higher experiential avoidance in caregiving may be prone to cognitive fusion, which in turn could lead to higher levels of anxiety symptoms. Therefore, an early intervention targeting experiential avoidance may be beneficial for preventing increased cognitive fusion and anxiety symptoms.

Questionnaires About the End of Life for Cancer Patients – Is the Response Burden Acceptable?

ContextResearch about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. ObjectivesTo assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. MethodsIn a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared. ResultsA total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = −0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported. ConclusionThe reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants’ benefits without compromising the research quality should further influence study designs in this field.

An Explanation of the Concept of the Care Burden of Family Caregivers of Children with Autism Spectrum Disorder from the Perspective of Family Caregivers

Background: Autism spectrum disorder (ASD), characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication, has greatly affected family caregivers, leading to subjective and objective care burdens on them. Objectives: The aim of this study was to explain the care burden of family caregivers of children with ASD from the perspective of family caregivers. Methods: In this qualitative study, 14 family caregivers were purposefully selected. The data were collected using semi-structured, in-depth interviews. The coding of the data was performed using MAXQDA 10 software, and then the data were analyzed by the content analysis method. Results: After the data coding, 266 codes were obtained, which were then classified into three main categories, including context and background, health factors (physical and mental health), and social support (formal and informal support). Conclusions: The results of the study showed that family caregivers bear the caregiving and mental burden of taking care of their autistic children. Besides adding to our body of knowledge and understanding of the problems encountered by caregivers, this study showed that the caregiving burden can be reduced by providing social support for the caregivers of autistic children.

Self-perceived problems of Afghan asylum seekers and refugees and their experiences with a short psychological intervention

BackgroundThe present study examined Afghan asylum seekers’ and refugees’ self-perceived problems, and their experiences of treatment with an adapted version of the brief transdiagnostic psychological intervention “Problem Management Plus” (aPM+). Specifically, the study explored which problems trouble them most and how these problems influence their daily functioning. Further, it examined how various standardized outcome measures correlate with these subjectively perceived problems.MethodThis study is part of a larger RCT study (PIAAS study) in which 88 Afghan asylum seekers and refugees were randomly allocated either to aPM + in addition to treatment as usual (aPM+/TAU) or TAU alone. The presented study uses a multi-method approach consisting of two parts: First, we investigated participants’ self-identified problems and subjective functional impairment using quantitative and qualitative assessment in both the aPM+/TAU and TAU group (n = 88). Second, we conducted in-depth qualitative interviews with a subsample of the aPM+/TAU group (n = 24) to gain a deeper understanding of participants’ personal experiences with aPM + and to obtain suggestions for improvement. Spearman correlations were applied for quantitative data, and deductive and inductive approaches of thematic analysis were used for qualitative data.ResultsWe identified six main themes of self-perceived problems (primary post-migration living difficulties, general mental health problems, interpersonal stressors, secondary post-migration living difficulties, mental health problems specifically associated with stress, and somatic problems) and their consequences, as well as subjective functional impairment. Standardized measures of general mental health, posttraumatic psychopathology, and quality of life did not correlate with the intensity of self-perceived problems. aPM + was mostly perceived positively, and few participants had recommendations for its improvement.ConclusionThe study aimed at giving a voice to Afghan trauma survivors to inform service providers and policy makers about their needs. Based on their expertise, future interventions can be tailored to their actual needs and optimized in terms of practical use. aPM + proved to be a positively perceived intervention that reduces subjective symptom burden and facilitates daily functioning. Culture-sensitive treatments within (mental) health services should increase service utilization and improve (mental) health in the long term.

Pharmacovigilance and Adverse Drug Reactions Reporting: Healthcare Providers' Experiences from Southern Highland Tanzania.

This exploratory qualitative study aimed to analyze the experiences of healthcare providers (HCPs) in pharmacovigilance (PV) and ADR reporting in the southern highland zone of Tanzania. In 2022, an exploratory qualitative case study using in-depth interviews (IDIs) was conducted to explore the experiences of PV and ADR reporting among HCPs (doctors, nurses, and pharmacists). The study was carried out in a zonal referral hospital and a regional referral hospital of the Tanzanian southern highlands zone. Inductive-deductive thematic analysis was adopted for data analysis. Participants demonstrated adequate knowledge of PV and its related activities including ADR reporting. Knowing the interactions and wrong medication dosage as sources of ADR, signs, and symptoms, stopping the drug, and treating the symptoms following ADR emerged as subthemes linked with adequate knowledge in identifying and managing ADR. Participants perceived reporting ADR as laborious, posing a subjective burden and that not all ADRs needed to be reported. The latter contributed to limited participation in ADR reporting despite that participants were conversant with both physical and online ADR reporting platforms. Although HCPs are well informed about PV and ADR reporting including the benefits to public health, their involvement in ADR reporting is low. In addition to the ongoing on-the-job training and regular supportive supervision for HCPs to improve the ADR practice, there is still a need to explore other strategies to be used as motives for HCPs to report ADR regularly.

Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.

To form a multifaceted picture of family caregiver economic costs in advanced cancer. A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24h. One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

Factors associated with subjective burden among informal caregivers of home-dwelling people with dementia: a cross-sectional study

BackgroundIt is estimated that more than 57 million people have dementia worldwide, and it is one of the leading causes of care dependency in old age. Relatives and other informal caregivers are the most important support for individuals with dementia, but caring for a loved one with dementia may burden the caregiver. Caregiver burden may have adverse outcomes for both the informal caregiver and the care recipient, including decreased quality of life. Caregiver burden is associated with several factors concerning the informal caregiver, the care recipient, and relational and other contextual factors. The aim of this study was to explore which factors are associated with informal caregivers’ subjective burden when caring for individuals living at home with dementia.MethodsThis study was a cross-sectional survey among informal caregivers of home-dwelling individuals with dementia in all five geographical regions of Norway. There were 540 informal caregivers who participated, 415 of whom were included in the regression analyses. Caregivers’ subjective burden was assessed with the Relatives’ Stress Scale. Covariates included were classified into four levels: individual (twofold: informal caregiver and person with dementia), relational, community, and time. Linear multivariable regression analyses were used to identify associations between subjective burden and included factors.ResultsSeveral covariates were statistically significantly associated with subjective burden at the four levels. These covariates included self-rated health, mental distress, age, coping through resignation and denial, emotional and instrumental support, substance use, and humor at the informal caregiver level; behavioral and psychological symptoms of dementia, dementia severity, and degree of disability at the care recipient level; the extent of care, being the primary caregiver, and previous relationship satisfaction at the relational context level; and informal caregivers spending time with friends, leisure activities, social restriction, and knowledge of available health services at the community context level.ConclusionsInformal caregivers’ mental distress and care recipients’ neuropsychiatric symptoms were the factors with the strongest association with subjective burden.

Influence of medical care tasks on subjective burden and gain among older adults’ family caregivers: structural equation modeling for testing the role of formal and informal support

BackgroundThe number of caregivers performing medical care tasks at home for older adults is expected to increase. Family caregivers, who are not healthcare professionals, are likely to find these activities difficult and burdensome. However, appropriate support may decrease the negative and increase the positive aspects of caregiving. This study investigated direct associations between caregivers providing medical care at home and their negative and positive appraisals of caregiving (burden and gain), indirect associations through healthcare professional support and informal support, and whether the associations between medical care tasks and caregivers’ appraisals of caregiving differed based on the support received.MethodsInterview surveys were conducted in 2013, 2016, and 2019 in a Tokyo Metropolitan Area city with family caregivers of community-dwelling older adults who were certified as requiring care in Japan’s long-term care insurance system. This study analyzed the combined data from each survey (n = 983). Structural equation modeling (SEM) analysis was utilized to examine direct associations between providing medical care and caregiver appraisals and indirect relationships through healthcare professional support and informal support. The modulating effects of these forms of support on the relationship between medical care and caregiver appraisals were assessed using multigroup SEM analyses.ResultsApproximately 9% of family caregivers provided medical care at home. The results of SEM analyses, controlled for care recipients’ physical and cognitive difficulties; caregivers’ age, sex, and economic condition; and survey year, revealed no direct associations between providing medical care and caregivers’ sense of burden and gain. They also did not reveal any indirect effects through either healthcare professional support or informal support. However, the results of multigroup SEM analyses indicated that caregivers providing medical care who used home-visit services by physicians and/or nurses, compared to those who did not, tended to exhibit a greater sense of gain.ConclusionsThese results suggest that family caregivers providing medical care at home can positively change their appraisals of caregiving if they receive appropriate support. Home medical care services provided by healthcare professionals can effectively support caregivers. Developing strategies and policies to make medical care services at home more accessible to caregivers is crucial.

Perceived Stressors and Support in Family Caregivers of Individuals With Opioid Use Disorder.

Stress experienced by family caregivers of individuals with opioid use disorder (OUD) contributes to caregiver burden. To understand the stressors experienced by family caregivers of individuals with OUD and the factors that influence their personal resiliency, data were collected from a convenience sample of family caregivers who answered two open-ended questions about sources of stress and factors that affect their personal resilience as part of an online survey. Yin's thematic analysis revealed five objective and two subjective burden themes and four resilience themes. Results indicate OUD places significant burden on families and may contribute to decreased physical and mental well-being in caregivers. Caregivers who perceived adequate support were able to use their experience and innate knowledge to cope and emerge with more resilience. Results of this study support the need for translational research to increase resilience and coping in this population of caregivers.

Subjective Burden and Task Performance during Simulated Long Working Hours

Subjective Burden and Task Performance during Simulated Long Working Hours

The role of frailty among the predictors of depression on informal caregivers of older adults: a mediation analysis.

Providing care for older adults has been associated with the presence of depressive symptoms among their informal caregivers. Numerous caregivers and older adults' characteristics have been mentioned as predictors of caregivers' depression. However, studies dealing with the impact of older adults' frailty status on caregivers' depression are scarce. This study was conducted to clarify the precise relationship between caregivers' depression, caregivers' burden, caregivers' characteristics and patients' characteristics, including frailty, among the variables that may have an impact on caregivers' depression. In this cross-sectional study, patients and caregivers' characteristics were recorded for 311 patient-caregiver dyads, when the patient was admitted to the hospital. For the purpose of the study, a mediation analysis was used with patients and caregiver characteristics considered to be predictors, subjective caregivers' burden as the mediator, and caregivers' depression as the outcome variable. Only patients' frailty and caregivers' subjective burden had a direct effect on caregivers' depression. Moreover, caregivers' gender, patients' frailty status and comorbidity, duration of caregiving, and the relationship with the patient, had an indirect effect through caregivers' burden that acted as mediator. Regarding total effects, caregivers burden followed by patients' frailty status had the greater impact on caregivers' depression. By organising interventions to reduce caregivers' depression, patients' frailty status could be among the targets of those interventions considering that frailty might be delayed or reversed.

Perioperative management of pancreatic exocrine insufficiency–evidence-based proposal for a paradigm shift in pancreatic surgery

BackgroundDespite exocrine pancreatic insufficiency (EPI) being a significant consequence of pancreatic surgery, there is still no consensus on its perioperative management. This study aimed to evaluate unselective pancreatic enzyme replacement therapy (PERT). MethodsA prospective, observational study of patients undergoing partial pancreatectomy was conducted. EPI status was assessed pre- and postoperatively, based on three fecal-elastase measurements each. Characteristic symptoms were evaluated by questionnaire. In 85 post-surgical patients, the subjective burden of PERT was measured. Results101 patients were followed prospectively. Preoperative EPI screening was available for 83 patients, of which 48% were diagnosed with preexisting EPI. Of those patients with regular exocrine function, 54% developed EPI de novo; this rate being higher following pancreatic head resections (72%) compared to left-sided pancreatectomies (LP) (20%) (p = 0.016). Overall postoperative EPI prevalence was significantly greater following pancreatic head resections (86%) than LP (33%) (p < 0.001). Only young and female patients described a significant burden related to PERT. ConclusionFor all patients undergoing pancreatic head resection PERT should be considered beginning prior to surgery, due to the subgroup's high EPI rate and the comparatively low burden of PERT. Patients with LP are at lower risk and should be pre- and postoperatively screened and supplemented accordingly.

P18.09.A PROTON THERAPY FOR PATIENTS WITH MENINGIOMA - WHAT ABOUT FINANCIAL TOXICITY AND OCCUPATIONAL STATUS?

Abstract BACKGROUND Patients (pts) with meningioma are commonly treated with proton therapy (PT) in order to minimize integral dose to normal brain parenchyma. Considering the high local control probability, preservation of Quality of Life (QoL) is gaining increasing importance.Potential loss of employment, inability to work or need to reduce working hours may lead to financial worries negatively affecting QoL. We investigated the subjective QoL and disease burden in pts with meningioma treated with PT with regards to income, financial toxicity, inability to resume work before and after PT. MATERIAL AND METHODS Data from prospectively assessed questionnaires (EORTC QLQ-C30) including an item for subjective financial difficulties, scaled from 1-4 (1=“not at all” to 4=”very much”), was collected from pts treated with PT for meningioma. Observed time points were prior to start of treatment (t1) and incrementally thereafter (completion of treatment, at 3months (ms),6ms,12ms,24ms,36ms and 48ms;t2-t8). Employment status was collected and net household income was assessed and ranked into 5 groups ranging from &amp;lt;1300€ to &amp;gt;5000€. RESULTS: RESULTS 171pts (39m/131f) aged 20-88yrs (mean 55.1) with meningioma were included. At a mean observation time of 29.6ms, 991 data sets were collected. 37pts (35.9%) reported health-related inability to work before PT. Over follow up (FU), it decreased to 33.8% at 12ms, 27.3% at 24ms, 15.4% at 36ms, 13.6% at 48ms. 34pts (33%) were employed prior to their diagnosis (14part-time, 18full-time). While rates of full-time employment initially decreased, it steadily increased from 1yr FU (t3-t8: 28.7%-59.1%), rates of part-time remained stable (t3-t8:27.2%-27.3%), see figure 1. Subjective financial burden correlated significantly with occupational situation (Spearman;p&amp;lt;0.001) indicating a reduction in patient-reported financial difficulties after commencement of work / increase in working hours. There were no relevant changes in pts´ income (Friedman:p=0.610); however, pts with lower income prior to PT reported subsequently higher levels of financial difficulties (Spearman:p&amp;lt;0.001). Before PT, 69 pts (40%) reported various levels of financial difficulties. Although rates decreased initially at the end of PT (30.2%), they consistently decreased at all subsequent FUs. This reflects the lower burden of financial toxicity over time. CONCLUSION At a mean observation time of &amp;gt;2 years, this study prospectively analyzed the potential impact of proton therapy in patients treated for meningioma. Patients reported an overall increase in employment rate, significant improvement in their financial situation and preservation and gain in their quality of life over time.