POS0151 A PRACTICAL GUIDE FOR THE ASSESSMENT OF PSORIASIS BURDEN IN PATIENTS WITH PSORIATIC ARTHRITIS

Background:Rheumatologists play an important role in the management of patients with Psoriatic Arthritis (PsA). With PsA being a multifaceted disease, it can be challenging to assess the impact of psoriatic skin symptoms, next to the musculoskeletal complaints. We have previously shown that a dermatology-specific Health-related Quality of Life (HRQoL) questionnaire provides insight into the burden of skin symptoms, in contrast to a general HRQoL questionnaire.1 When treating PsA patients, specific questions on skin symptoms are necessary in order to assess the burden of psoriasis.Objectives:To create a set of questions that can easily identify PsA patients with a high psoriasis burden in daily rheumatology clinical practice.Methods:Data from patients receiving usual care were used from the Dutch south west Psoriatic Arthritis (DEPAR) cohort, consisting of newly diagnosed PsA patients included between July 2013 and March 2020. The two dermatology-specific HRQoL questionnaires used were the Skindex-17 and Dermatology Life Quality Index (DLQI), both with a one-week recall period.First, an exploratory principal component analysis (PCA) with varimax rotation was performed on both questionnaires combined, to identify underlying latent traits. Subsequently, items were dichotomized on their median frequencies. And a 2-parameter logistic (2PL) model was fitted for each latent trait. Item characteristic curves were plotted for each latent trait. Item selection took place based on the discrimination and difficulty of the items. Per latent trait, we selected 2 to 3 items distributed far apart across the latent trait. A flowchart was made with the selected questions.Results:In total, 413 patients with completed Skindex-17 and DLQI questionnaires at baseline were included. Mean (sd) age was 50.3 (13.4) years and median (IQR) Psoriasis Area and Severity Index (PASI) score 2 (0.5-4.2). The PCA gave the best fit with two underlying clusters of questions, namely psychosocial (n=20) questions and questions regarding physical symptoms (n=7). Three questions were selected to assess psychosocial impact and two for impact of physical symptoms (Figure 1). Questions should be asked in chronological order.Figure 1.Flowchart of questions assessing psoriasis burden.Cluster 1: PsychosocialThe first question is if the patient was embarrassed by their skin condition. If answered with “never”, the patient experienced the lowest burden. When answered with “rarely/sometimes” or “often/always”, continue to the second question. Ask the patient if they tended to stay at home because of their skin condition. If answered with “never”, they experienced a higher burden. If answered with “rarely/sometimes” or “often/always”, continue to the last question. Ask the patient if their skin condition has prevented them from working or studying. If not, the patient experienced a higher burden and if answered with “yes”, they experienced the highest burden in this domain.Cluster 2: Physical symptomsFirst ask the patient how itchy, sore, painful or stinging their skin was. If they answer with “not at all”, they experienced the lowest burden. If answered with “a little/a lot/very much”, continue to the second question. Ask if their skin was irritated. If answered with “never/rarely/sometimes”, they experienced a higher burden. If answered with “often/always”, the patient experienced the highest burden in this domain.Conclusion:We have created a practical guide for rheumatologists to distinguish PsA patients with a high psoriasis burden from those with a lower burden. With a minimum of two and a maximum of five questions, both psychosocial burden of psoriasis and burden of physical symptoms can be easily identified in daily clinical practice.References:[1]Kasiem FR, Kok MR, Tchetverikov I, Wervers K, Hazes J, Luime J, et al. AB0786 Impact of psoriasis severity on Health-Related Quality of Life in early psoriatic arthritis: results from real world data, the DEPAR study. Annals of the Rheumatic Diseases. 2020;79:1691-2.Disclosure of Interests:None declared

Impact of Specific Bowel Symptoms on Quality of Life in Patients with Midgut Neuroendocrine Tumours

Introduction Patients with midgut neuroendocrine tumours (NETs) suffer from decreased health-related quality of life (HRQoL), in large part due to bowel symptoms. However, it is unknown which bowel symptoms affect HRQoL the most. An enhanced understanding of this is essential to better focus treatment on this aspect of the disease. This study aimed to determine which bowel symptoms affect HRQoL the most in patients with midgut NETs. Methods Consenting patients with midgut NET completed the Memorial Sloan Kettering Bowel Function Instrument and the HRQoL questionnaire (EORTC QLQ-C30). The correlation between bowel symptoms and HRQoL was analysed using multiple linear regression, adjusting for age, Charlson Comorbidity Index score, presence of metastatic disease, chromogranin A, and BMI yielding ß-coefficients with 95% confidence intervals. Results Totally, 119 patients with midgut NET completed the questionnaires and were included in the study. Loose stool and bowel frequency ≥ 3/day were the most common bowel symptoms, reported by 47% and 56% of patients, respectively. However, sensitivity to certain types of food and beverages, a feeling of incomplete emptying of the bowel, and soiling were the symptoms most strongly correlated with decreased HRQoL, especially within domains concerning role and social function, with ß-coefficients for the strongest correlated symptoms of 15.0 and 14.6, respectively. Discussion While symptoms concerning stool consistency and frequency are common in patients with midgut NET, our study suggests that other, more socially stigmatising symptoms affect patients’ HRQoL more. Our findings could help caregivers understand patients’ perceptions of the disease and provide avenues for more directed therapies.

Validation of a new hemifacial spasm grading questionnaire (HFS score) assessing clinical and quality of life parameters

Validation of the new hemifacial spasm (HFS) questionnaire “HFS score” that captures both clinical (HFS clinical) and health-related quality of life (HRQOL) parameters (HFS subjective) in one tool and comparison with a global HRQOL questionnaire. Cross sectional, prospective validation study including 143 subjects (62 HFS patients and 81 healthy volunteers) from the University Eye Hospital Bonn. Patients were interviewed with the new HFS score and the SF-12 questionnaire prior to and 3 weeks after Botulinum neurotoxin A (BoNT-A) injection. All HRQOL-related questions (HFS subjective) were answered on a visual analogue scale (VAS) ranging from 0 (no complaints) to 100% (maximum complaints) by the patients themselves. Reproducibility was tested in a study extension with 10 patients by repeat interviews (telephone/personal). The new HFS score questionnaire provided a reliable clinical assessment and demonstrated that BoNT-A therapy significantly reduced frequency and severity of eye and cheek spasms (p < 0.001; Wilcoxon test). Relevant aspects of HRQOL of HFS patients were assessed with high accuracy and sensitivity. Significant improvements were achieved after BoNT-A injection in five out of eight HRQOL parameters (p ≤ 0.02; Wilcoxon test). Cronbach’s alpha of 0.818 demonstrated good internal consistency. Telephone survey provided comparable results to personal interviews. This new sensitive and specific HFS score seems a reliable instrument to monitor BoNT therapy and customize it to the needs of the individual HFS patient—in clinical studies and daily clinical practice.

Comparing health-related quality of life in modified Rankin Scale grades: 15D results from 323 patients with brain arteriovenous malformation and population controls

Background We wanted to understand how patients with different modified Rankin Scale (mRS) grades differ regarding their health-related quality of life (HRQoL) and how this affects the interpretation and dichotomization of the grade. Methods In 2016, all adult patients in our brain arteriovenous malformation (AVM) database (n = 432) were asked to fill in mailed letters including a questionnaire about self-sufficiency and lifestyle and the 15D HRQoL questionnaire. The follow-up mRS was defined in 2016 using the electronic patient registry and the questionnaire data. The 15D profiles of each mRS grade were compared to those of the general population and to each other, using ANCOVA with age and sex standardization. Results Patients in mRS 0 (mean 15D score = 0.954 ± 0.060) had significantly better HRQoL than the general population (mean = 0.927 ± 0.028), p < 0.0001, whereas patients in mRS 1–4 had worse HRQoL than the general population, p < 0.0001. Patients in mRS 1 (mean = 0.844 ± 0.100) and mRS 2 (mean = 0.838 ± 0.107) had a similar HRQoL. In the recently published AVM research, the most commonly used cut points for mRS dichotomization were between mRS 1 and 2 and between mRS 2 and 3. Conclusions Using 15D, we were able to find significant differences in the HRQoL between mRS 0 and mRS 1 AVM patients, against the recent findings on stroke patients using EQ-5D in their analyses. Although the dichotomization cut point is commonly set between mRS 1 and 2, patients in these grades had a similar HRQoL and a decreased ability to continue their premorbid lifestyle, in contrast to patients in mRS 0.

The Impact of COVID-19 on the mental health of dialysis patients

Background Studies have shown increased anxiety, depression, and stress levels among different populations during the coronavirus disease 2019 (COVID-19) pandemic. However, the impact of the pandemic on the mental health of dialysis patients remains unknown. The aim of this study was to investigate the mental health of dialysis patients during the COVID-19 pandemic compared to the period preceding the pandemic. Methods Data originate from the ongoing multicentre observational Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). Patients who filled in a health-related quality of life (HRQoL) questionnaire during the pandemic and six to three months prior were included. The mean difference in Mental Component Summary (MCS) score of the Short Form 12 (SF-12) was analysed with multilevel linear regression. A McNemar test was used to compare presence of mental health-related symptoms during and prior to the COVID-19 pandemic. Results A total of 177 patients were included. The mean MCS score prior to COVID-19 was 48.08 ± 10.15, and 49.00 ± 10.04 during the COVID-19 pandemic. The adjusted mean MCS score was 0.93 point (95% CI − 0.57 to 2.42) higher during the COVID-19 pandemic than during the period prior to the pandemic. Furthermore, no difference in the presence of the following mental health-related symptoms was found during the COVID-19 pandemic: feeling anxious, feeling sad, worrying, feeling nervous, trouble falling asleep, and trouble staying asleep. Conclusions The mental health of dialysis patients appears to be unaffected by the COVID-19 pandemic. Dialysis patients may be better able to cope with the pandemic, since they have high resilience and are less impacted by social distancing measures. Trial registration number Netherlands Trial Register NL6519, date of registration: 22 August 2017. Graphic abstract

The long-term caregiver burden in WHO grade I and II meningioma: it’s not just the patient

Background Little is known about long-term caregiver burden in meningioma patients. We assessed meningioma caregiver burden, its association with informal caregiver’s well-being and possible determinants. Methods In this multicenter cross-sectional study, informal caregivers completed the Caregiver Burden Scale (five domains and total score). Patients completed a disease-specific health-related quality of life (HRQoL) questionnaire focusing on symptoms (EORTC QLQ-BN20) and underwent neurocognitive assessment. Both groups completed a generic HRQoL questionnaire (SF-36) and the Hospital Anxiety and Depression Scale. We assessed the association between caregiver burden and their HRQoL, anxiety and depression. Furthermore, we assessed determinants for the caregiver burden. Multivariable regression analysis was used to correct for confounders. Results 129 informal caregivers were included (median 10 years after patients’ treatment). Caregivers reported burden in ≥1 domain (35%) or total burden score (15%). A one-point increase in total caregiver burden score was associated with a clinically relevant decrease in caregiver’s HRQoL (SF-36) in 5/8 domains (score range: -10.4 to -14.7) and 2/2 component scores (-3.5 to -5.9), and with more anxiety (-3.8) and depression (-3.0). Patients’ lower HRQoL, increased symptom burden, and increased anxiety and depression were determinants for higher caregiver burden, but not patients’ or caregivers’ sociodemographic characteristics, patients’ neurocognitive functioning, or tumor- and treatment-related characteristics. Conclusions Ten years after initial treatment, up to 35% of informal caregivers reported a clinically relevant burden, which was linked with worse HRQoL, and more anxiety and depression in both patients and caregivers, emphasizing the strong interdependent relationship. Support for meningioma caregivers is therefore warranted.

Health-related quality of life questionnaires used in primary biliary cholangitis: a systematic review

Objective The purpose of this systematic review was to assess the suitability of HRQOL questionnaires in patients with primary biliary cholangitis. Methods Five electronic databases were searched. The validity of translated questionnaires, floor and ceiling effects, internal consistency and test-retest reliability were investigated. Results Forty-four studies were included, of which fifteen HRQOL questionnaires were identified. The instruments used most frequently were the PBC-40 (n = 22), followed by the SF-36 (n = 19), PBC-27(n=4), CLDQ (n = 3) and NIDDK-QA(n=2), the remaining instruments were uesd only once. Tweenty-six studies used a translated HRQOL questionnaire and only six reported or referenced a validation of the translated questionnaire. Conclusions PBC-specific HRQOL questionnaires used in primary biliary cholangitis have generally good psychometric properties. But lots of studies directly applied the HRQOL tools without verifying the HRQOL tools validity and reliability in PBC patients. Thus, it is better for clinicians and researchers to test the measurement properties of HRQOL questionnaires before use it.

Validation of subscales of the Severe Asthma Questionnaire (SAQ) using exploratory factor analysis (EFA)

Background The Severe Asthma Questionnaire (SAQ) is a health related quality of life (HRQoL) questionnaire validated for use in severe asthma. It is scored using the mean value of 16 items (SAQ score) in addition to a single item global rating of HRQoL (SAQ-global). The aim was to validate clinically relevant subscales using exploratory factor analysis (EFA). Methods The SAQ was completed, along with measures of asthma control and EQ5D-5L by patients attending six UK severe asthma centres. Clinical data were included in the analysis. EFA using principal axis factoring and oblimin rotation was used to achieve simple structure of data. Results 460 patients with severe asthma participated, 65% women, mean age 51 (16–83) years. A three factor solution achieved best fit and showed that the SAQ items formed three distinct but inter-correlated groups of items where items were grouped in a way that was consistent with item content. The three subscales were differentially associated with clinically relevant variables (lung function and mood). Males and females interpreted the question of night disturbance in different ways. Conclusions This paper provides a template for best practice in the use of EFA when validating HRQoL subscales. The SAQ can be scored as three subscales with content reflecting three different constructs people with severe asthma use when making judgements about their lives. The subscale ‘My Life’ assesses the impact of severe asthma on different life activities, ‘My Mind’ assesses the perceived emotional impact and ‘My Body’ the impact of extra-pulmonary symptoms and side effects.

Validation of subscales of the Severe Asthma Questionnaire (SAQ) using exploratory factor analysis (EFA)

BackgroundThe Severe Asthma Questionnaire (SAQ) is a health related quality of life (HRQoL) questionnaire validated for use in severe asthma. It is scored using the mean value of 16 items (SAQ score) in addition to a single item global rating of HRQoL (SAQ-global). The aim was to validate clinically relevant subscales using exploratory factor analysis (EFA).MethodsThe SAQ was completed, along with measures of asthma control and EQ5D-5L by patients attending six UK severe asthma centres. Clinical data were included in the analysis. EFA using principal axis factoring and oblimin rotation was used to achieve simple structure of data. Results460 patients with severe asthma participated, 65% women, mean age 51 (16-83) yrs. A three factor solution achieved best fit and showed that the SAQ items formed three distinct but inter-correlated groups of items where items were grouped in a way that was consistent with item content. The three subscales were differentially associated with clinically relevant variables (lung function and mood). Males and females interpreted the question of night disturbance in different ways.ConclusionsThis paper provides a template for best practice in the use of EFA when validating HRQoL subscales. The SAQ can be scored as three subscales with content reflecting three different constructs people with severe asthma use when making judgements about their lives. The subscale ‘My Life’ assesses the impact of severe asthma on different life activities, ‘My Mind’ assesses the perceived emotional impact and ‘My Body’ the impact of extra-pulmonary symptoms and side effects.

A translation and preliminary validation of the Dutch Wound-QoL questionnaire

BackgroundChronic wounds have a major impact on patients’ health-related quality of life (HRQoL). Therefore, measuring HRQoL is an indispensable part of the treatment of patients with chronic wounds. The aim of this study was to translate and validate the Wound-QoL, a wound-specific HRQoL questionnaire, in a Dutch population. MethodsThe Wound-QoL was translated into Dutch according to the international standards. Patients with chronic wounds were asked to complete questionnaires at baseline (T0) and after 6 weeks (T1), including Wound-QoL, EQ-5D-3L (a generic questionnaire to measure HRQoL) and a visual analogue scale (VAS) measuring wound pain. If patients were not able to complete the questionnaire by themselves, it was read out to them by a nurse. Further data were obtained from medical records.ResultsOf the 120 patients included, 64 (53.3%) completed the questionnaire by themselves. To 55 patients (45.8%), the questionnaire was read out. The internal consistency of the Wound-QoL global score was high at both time points (T0: Cronbach’s α=0.89, T1: Cronbach’s α=0.92). The item selectivity for global score ranged from r=0.25 to r=0.77 at T0 and from r=0.40 to r=0.79 at T1. Overall, the self-completion and read-out subgroups showed similar internal consistency and item selectivity scores. With regard to convergent validity, significant correlations were found between Wound-QoL and EQ-5D-3L (T0: r=-0.45, p<0.001, T1: r=-0.50, p<0.001) as well as between Wound-QoL and pain VAS (T0: r=0.23, p=0.012, T1: r=0.37, p=0.001) at both time points. Responsiveness analyses showed significant correlations between changes in Wound-QoL and changes in EQ-5D-3L (r=-0.37, p<0.001), pain VAS (r=0.24, p=0.044) and wound size (r=0.24, p=0.013). The self-completion and read-out subgroups showed differences in convergent validity and responsiveness. ConclusionsThe results indicate that the Dutch version of the Wound-QoL has positive psychometric properties. However, more research is needed to further explore the differences between self-completed and read-out questionnaires.