QOL Impairment Research Articles

A cross‐sectional study on quality of life in adult indolent systemic mastocytosis and its association with cutaneous involvement

AbstractBackgroundSystemic mastocytosis (SM) is characterized by abnormal mast cell accumulation in various tissues, including the skin, and encompasses several clinical variants, ranging from less aggressive to more severe forms. ISM, the most common variant, often presents with cutaneous manifestations, causing significant impairment in QoL due to mediator‐release symptoms and stigma associated with typical cutaneous lesions.ObjectivesThe study aimed to assess QoL impairment in ISM patients and its correlation with demographic and clinical data.MethodsA cohort of 52 adult ISM patients was evaluated using the Dermatology Life Quality Index (DLQI) and the mastocytosis QoL questionnaire (MC‐QoL). Questionnaire scores were then analyzed in relation to the clinical and demographic characteristics of the patients.ResultsOver half of the patients experienced mild or higher levels of impairment in QoL, with female patients showing greater impairment than males. Patients with recent symptom onset reported higher MC‐QoL scores, possibly due to psychological factors and lack of disease knowledge. Cutaneous symptoms significantly impacted QoL, and the visibility of lesions affected DLQI scores more than MC‐QoL scores. A moderately strong correlation was observed between DLQI and MC‐QoL scores, particularly in the Skin and Social Life domains. The study highlights gender differences in QoL impairment, suggesting the need for further investigation into potential social or cultural factors.ConclusionsWhile the study provides valuable insights into QoL impairment in ISM patients, its monocentric nature and small sample size are notable limitations. Further research is warranted to better understand the impact of SM on patients' well‐being and to identify effective strategies for managing symptoms and improving overall QoL in this population.

Cut-off points to classify numeric values of quality of life into normal, mild, moderate, and severe categories: an update for EORTC-QLQ-H&N35

BackgroundQuality of life (QoL) is an important determinant of physical and mental health. QoL in head and neck cancer tends to deteriorate due to changes in the physical, functional, psychological aspects. EORTC-QLQ-H&N35 is an instrument that measure the QoL specifically in head and neck cancer patients. EORTC-QLQ-H&N35 give a numeric value to QoL of patients with high value correspond to better QoL.ObjectiveThe aim of present study was to find out the cut-off points of numeric values of EORTC-QLQ-H&N35 to categorize QoL impairment into different categories (normal, mild, moderate, and severe). Present study also aims analyze the QoL among head and neck cancer patients under these new categories.MethodologyTotal 205 patients of head and neck cancer visiting to the outpatient unit were enrolled in this study. Hindi version of EORTC-QLQ-H&N35 was used to evaluate the QoL. Total 9 classification schemes were created with different cut-off points to classify the global QoL score into normal, mild, moderate and severe categories. QoL data was then analyze using the scheme having highest F value in ANOVA test.ResultsClassification scheme having cut-off values 76–100 for normal QoL, 51–75 for mild QoL impairment, 26–50 for moderate and 0–25 for severe QoL impairment found to have highest F value (729.915) in ANOVA test. The mean QoL score among total 205 patients were 60.08 ± 19.06. Based on the new classification scheme, QoL was normal in 46 (22.4%) patients whereas QoL was impaired to mild level in 76 (37.1%) patients, to moderate level in 76 (37.1%) and to severe level in 7 (3.4%) patients. Role functioning, emotional functioning and social functioning was impaired to severe level in 4 (2.0%), 13 (6.3%) and 3 (1.5%) patients respectively.ConclusionEORTC-QLQ-H&N35 offer a comprehensive review of QoL in head and neck cancer patients. By designating the QoL score into different categories, it will become easier for clinician to have a better idea of QoL of head and neck cancer patients.

Survey of hereditary angioedema episodes and quality of life impairment through a patient-participatory registry

Hereditary angioedema (HAE) adversely affects patients’ social and daily life significantly, and the disease burden is high. We recruited study participants from a patient-participatory registry, Rare and Undiagnosed Diseases Study (RUDY) Japan, to better understand the broader effect of HAE on patients’ lives. Thirteen patients with HAE who registered between January 2019 and March 2021 completed an online questionnaire to record details of episodes and the angioedema quality of life (AE-QoL) questionnaire, in which they described the degree to which QoL was impaired. In all, 58 episodes were recorded, and self-reported data were accumulated from 24 returned AE-QoL questionnaires. The episodes peaked between approximately 06:00 and 07:00 h and between approximately 16:00 and 20:00 h. Of the 58 episodes, 38 (65.5%) were treated; 24 (63.2%) were treated at patients’ homes. The drugs used in treatment were hospital-administered human C1-inhibitor preparations for 14 episodes and home-administered icatibant for 26 episodes. Time between episode onset and treatment initiation and between episode onset and full recovery tended to be shorter with icatibant treatment at home. The total AE-QoL score was 37.1 ± 22.9, indicating great impairment of QoL, with particularly high scores in the fatigue/mood and fears/shame domains. Most previous studies of real-world HAE episodes have been retrospective, based on patients’ memories. Collaboration between patients and researchers revealed the location of episodes, the time of day they appeared, treatments for episodes, and the degree to which patients’ QoL was impaired by HAE in this prospective study.

Atopic dermatitis in children: a cross-sectional study of its impact on quality of life

Background: Atopic dermatitis, characterized by chronic inflammation of the skin, manifests with symptoms such as itching, skin discomfort, and sleep disturbances, significantly impacting the physical health and daily functioning of affected children. We embarked on this study to assess the Quality of Life of children with AD, identify factors that influence their QoL, and determine the specific domains of QoL most affected by the condition. Methods: Children up to 16 years of age, who met the Hanifin and Rajka’s diagnostic criteria for AD, were identified. The severity of AD was assessed using the severity scoring of atopic dermatitis index, and QoL was assessed using validated questionnaires: the infants dermatitis quality of life index for children under 4 years and the children’s dermatology life quality index for children 4 years and above. Results: A total of 70 children with AD were enrolled in the study. The mean QoL (IDQOL/CDLQI) score for children with AD was 6.7±5.05 and QoL was significantly impaired in children with more severe disease. The domains of QoL most affected by AD were related to pruritus, sleep disturbances, mood changes and treatment related issues. The duration of illness and the presence of other atopic comorbidities showed a significant correlation with QoL impairment, whereas age, gender and socioeconomic status demonstrated no such correlation. Conclusions: This study highlights the substantial impact of AD on the QoL of affected children, especially due to symptoms like itching and sleep disturbances.

QUALITY OF LIFE IN ACNE PATIENTS USING ISOTRETINOIN AT CAN THO HOSPITAL OF DERMATO- VENEREOLOGY IN 2023

Background: Acne vulgaris is a common chronic skin disease that mainly occurs during puberty. Although acne vulgaris is not life-threatening, it has physical symptoms such as a rash, pain, and stinging. It also affects patients psychologically (such as friendship issues, workplace trouble, bad appearance, self-deprecation, shame, anger, anxiety, emotional burden, etc.), socially (dislike, feeling stigmatized, etc.), and mentally (anxiety, depression, and suicidal thoughts). All of these problems severely reduce the patient's quality of life. In Vietnam in general and at Can Tho Dermato-Venereology Hospital in particular, acne is one of the leading causes of patients coming for examination and treatment. However, few studies on the quality of life of acne patients have been done. Objectives: To determine the rate of impact on quality of life and some related factors in patients with moderate to severe acne at Can Tho Dermato-Venereology Hospital in 2021-2023. Materials and methods: A cross-sectional descriptive study analyzed 92 patients with acne at Can Tho Dermato-Venereology Hospital. Results: In our study, 43.5% of patients were female, 53.7% were male; and the majority of patients (55.4%) were aged 19 years old and over, compared to 44.6% aged under 19. The disease duration under 1 year was 33.7% and from 1 year or more 66.3%. Severe and very severe acne accounted for 73.9%, and moderate acne was 26.1%. For acne-induced QoL impairment by CADI score, there was no impairment (CADI=0) in 4 (4,3%), mild impairment (CADI=1-5) in 12 (13%), moderate impairment (CADI=6-10) in 48 (52,2%) and severe impairment (CADI=11-15) in 28 (30,4%). The severity of impairment was associated with acne grade (p=0,038). In view of acne grade, the level of QoF impairment among severe and very severe acne (97,1%) outgrew it in moderate acne (83,3%). The severity of impairment was associated with occupation (p=0,033) and the duration of acne (p=0,016). Conclusions: There was no impairment in 4 (4,3%), mild impairment in 12 (13%), moderate impairment in 48 (52,2%) and severe impairment in 28 (30,4%). The severity of impairment was associated with occupation (p=0,033), duration of acne (p=0,016), and acne grade (p=0,038).

CNF-Skindex in Adults Living with Neurofibromatosis 1: Severity Strata in France and Validation in United States Adults

Cutaneous neurofibromas (cNF) contribute to the impairment of QOL in individuals with neurofibromatosis 1. The cNF-Skindex, validated in a French population, specifically assesses the cNF-related QOL. In this study, we first defined severity strata using an anchoring approach on the basis of patient's burden. In total, 209 patients answered the anchor question and the cNF-Skindex. We tested the agreement among the three strata, generated by all potential couples of cut-off values of the cNF-Skindex and the three strata defined in the anchor question. The cut-off values 12 and 49 provided the highest Kappa value (κ= 0.685, 95% confidence interval= 0.604-0.765). Second, we validated the score and the strata in a United States population using the answers provided by 220 French and 148 United States adults. In the multivariable linear regression analysis, the country of origin was not a factor associated with the score (P= 0.297). The number of cNF along the different severity strata was similar between the French and the United States populations. In conclusion, stratification constitutes a powerful tool to better interpret the cNF-Skindex in daily practice and in clinical trials. This study validates its use in two populations that together constitute a large cohort of patients willing to participate in clinical research.

Impact of muscular symptoms and/or pain on disease characteristics, disability, and quality of life in adult patients with hypophosphatasia: A cross-sectional analysis from the Global HPP Registry.

Hypophosphatasia (HPP) manifests in adults as fractures/pseudofractures, pain, muscle weakness, and other functional impairments. Better phenotypic disease characterization is needed to help recognize disability and treat patients with HPP. Baseline/pretreatment demographic, clinical characteristic, and patient-reported disability/health-related quality-of-life (HRQoL) data from adults (≥18 y) in the Global HPP Registry (NCT02306720) were stratified by presence of overt skeletal manifestations (skeletal group) versus muscular/pain manifestations without skeletal manifestations (muscular/pain group) and summarized descriptively. Disability was measured using the Health Assessment Questionnaire-Disability Index (HAQ-DI), and HRQoL using the 36-item Short Form Health Survey (SF-36v2). Of 468 adults, 300 were classified into the skeletal group and 73 into the muscular/pain group. The skeletal group had a higher median age at baseline (50.1 vs 44.4 y; P=0.047) but a lower median age at first HPP manifestation (12.3 vs 22.1 y; P=0.0473), with more signs and symptoms (median, 4 vs 3; P<0.0001) and involved body systems (median, 3 vs 2; P<0.0001) than the muscular/pain group. More patients in the skeletal group required any use of mobility aids (22.6% vs 3.5%, respectively; P=0.001). Six-Minute Walk test distances walked were similar between groups. SF-36v2 and HAQ-DI scores were similar between groups for physical component summary (n=238; mean [SD]: 40.2 [11.0] vs 43.6 [11.2]; P=0.056), mental component summary (n=238; mean [SD]: 43.6 [11.3] vs 43.8 [11.8]; P=0.902), and HAQ-DI (n=239; median [minimum, maximum]: 0.4 [0.0, 2.7] vs 0.3 [0.0, 2.1]; P=0.22). Adults with HPP experience similar QoL impairment regardless of skeletal involvement. https://clinicaltrials.gov/ct2/show/NCT02306720 and https://www.encepp.eu/encepp/viewResource.htm?id=47907, identifier NCT02306720; EUPAS13514.

Parachute-like pull-through anastomosis for low rectal cancer: a new method for preservation of anal function

BackgroundWith recent improvements in surgical technique, oncological outcomes of low rectal cancer have improved over time. But the QoL impairment as a result of anal functional disorder cannot be ignored. And the incidence of anastomosis-related complications cannot be ignored. To address these problems, a personal technique for pull-through coloanal anastomosis (parachute-like intussuscept pull-through anastomosis) was introduced and evaluated. This technique can relatively reduce surgical complications, minimize the impact of anal function, and obviate a colostomy creation.MethodsBetween June 2020 and April 2021, 14 consecutive patients with rectal cancer underwent laparoscopic-assisted resection of rectal cancer in our hospital. Parachute-like pull-through anastomosis method was performed in all patients. Anal function, perioperative details, and postoperative outcomes were analyzed.ResultsThe mean (SD) operative time of first stage was 282.1 min (range 220–370) with an average estimated blood loss of 90.3 mL (range 33–200). And the mean (SD) operative time of second was 46 min (range 25–76) with an average estimated blood loss of 16.1 mL (range 5–50). Wexner scores declined significantly during the median follow-up of 18 months. Four postoperative anastomosis-related complications occurred in 14 patients, including perianastomotic abscess: 1 case (7%), anastomotic stricture: 1 case (7%), and colonic ischemia of the exteriorized colonic segment: 2 cases (14%).ConclusionThe results suggest that the method can facilitate safe and easy completion of coloanal anastomosis, using parachute-like pull-through anastomosis, with acceptable anal function.

Psoriatic Foot Involvement is the Most Significant Contributor to the Inconsistency Between PASI and DLQI: A Retrospective Study from China.

The Psoriasis Area and Severity Index (PASI) and the Dermatology Life Quality Index (DLQI) are important evaluation tools for assessing psoriasis severity and guiding treatment options. However, the scores of PASI and DLQI are often inconsistent. This study aimed to identify the factors affecting the consistency between PASI and DLQI. The retrospective study was based on 4125 patients. We collected the PASI, DLQI, demographic and clinical characteristics data. DLQI has a weak correlation with PASI (r=0.37; P<0.001). For the DLQI >10 groups, DLQI has almost no correlation with PASI (r=0.16; P<0.001). There are 43.60% of mild-to-moderate patients (PASI<10) in the DLQI>10 groups. Our adjusted model showed that foot (OR=2.109; 95% CI:1.581-2.815) involvement led to the greatest impairment of QoL except for PASI≥10 (OR=5.547; 95% CI:3.477-8.845). Furthermore, DLQI impairment was associated with female (OR=1.336; 95% CI:1.071-1.667); the age of 20-39 subgroup (OR=1.795; 95% CI:1.100-2.930); psoriatic arthritis (OR=1.718; 95% CI:1.208-2.443); higher income (OR = 1.408; 95% CI: 1.067-1.858); family history of psoriasis (OR=1.460; 95% CI:1.131-1.885). Moreover, the influence of exposed lesions (such as scalp; face; neck; nails; and hands) were positively associated with severely impaired QoL. Dermatologists should recognize the underestimated disease burden of psoriasis patients and actively identify and treat mild-to-moderate patients with high burden. In particular, the foot was a significant contributor to the burden.

P761 Negative Body Image in Inflammatory Bowel Disease persists despite Modern IBD care

Abstract Background Body image dissatisfaction (BID) is prevalent in patients with Inflammatory Bowel Disease (IBD). Historically female sex, previous IBD surgery, impaired QoL have been associated with negative body image. The introduction of biologic therapies and modern IBD care in Australia in 2007 has improved disease control and endoscopic outcomes, but it is unclear if body image has improved in parallel with this. We aimed to determine whether body image and QoL have improved amongst IBD patients with modern IBD car Methods Tertiary IBD service patients were offered inclusion in the study in 2006 by postal survey (pre-biologic era), and in 2021 by electronic survey (biologic era). Surveys included demographics and history of IBD surgery. In the pre-biologic era (PBE) body image dissatisfaction (BID) and QoL were assessed using a patient reported yes/no question, followed by an open question about how IBD or treatment has changed the way they view their body’s appearance. In the biologic era (BE) the validated modified Body Image Scale and Short Inflammatory Bowel Disease Questionnaire were used. Results The BE included 135 patients, 59% female, mean age 45.9. The PBE included 215 patients, 66% female and mean age 35.5. PBE had 40% reporting IBD surgery vs 36% in BE (P=0.489). BID was observed in 67% vs 39% of the PBE and BE respectively (p&amp;lt;0.01). In the PBE free text responses elicited themes of dissatisfaction with medication or steroid-related appearance changes (41%), bloating (30%), weight gain (28%), weight loss (12%), and specific appearance changes. The link between body image and QoL was mentioned by 33% of patients, with 8% specifically mentioning its impact on their mental health. Females were affected to a greater extent in both PBE (75% vs 52% p&amp;lt;0.01), and BE (50.5% versus 22% p&amp;lt;0.01). In the PBE patients with surgical intervention for IBD had higher rates of BID than those without surgery (81% vs 58%, p&amp;lt;0.01). This association between surgery and BID was not observed in the BE (47% vs 34.9%, p=0.168). In the PBE those with BID were significantly more likely to report impaired QoL(97% vs 71%, p&amp;lt;0.01). This association persisted with time with BE patients with BID also having higher rates of QoL impairment (85% vs 45% p&amp;lt;0.01). Conclusion Whilst the rate of BID has decreased with modern IBD treatment; it remains highly prevalent and is associated with impaired QoL. Whilst females remain disproportionately affected, the historically observed association between IBD surgery and impaired body image was not demonstrated in the BE. This may reflect improved surgical techniques and biologic down staging prior to surgery. However, body image remains an important Patient Reported Outcome in IBD and warrants further attention.

Olfactory-related quality of life impacts psychological distress in people with COVID-19: The affective implications of olfactory dysfunctions

BackgroundCoronavirus disease 2019 (COVID-19) often causes chemosensory impairment, and olfactory dysfunctions may have negative consequences on psychological distress. This study aimed at assessing which dimension of perceived olfactory disfunctions (i.e., subjective olfactory capability, smell-related problems, or olfactory-related quality of life [QoL]) was most associated with psychological distress in people diagnosed with COVID-19. Methods364 participants (65 men and 299 women) diagnosed with COVID-19 on average 7 months prior to the beginning of the study were recruited between June 5 and 21, 2021, to take part in an online cross-sectional survey. Participants answered questions on demographics, clinical factors, perceived olfactory functioning, and psychological distress. Hierarchical multiple linear regression analysis was conducted, assessing the role of demographics, clinical factors, and perceived olfactory functioning dimensions on psychological distress. ResultsMore than half of the participants met the cut-off for all perceived olfactory dysfunctions scales and psychological distress. Being women, smoker, with comorbidities, and greater severity of COVID-19 symptoms were associated with higher scores on psychological distress. Among perceived olfactory functioning scales, only impairment in olfaction QoL was associated with psychological distress. LimitationsLimitations concerned the cross-sectional nature of the study and the unbalanced sample in terms of gender. ConclusionsThe study confirmed the core intertwining between mood, perceived QoL, and olfactory functioning, showing how impairments in olfactory processing are strongly correlated with psychological distress through the impact they have on the perceived QoL.

Home-based pulmonary rehabilitation in patients undergoing (chemo)radiation therapy for unresectable lung cancer: a prospective explorative study

AimsThe prevention of pulmonary toxicity is an important goal for patient candidate to radiation therapy for lung cancer. There is a lack of evidence on the role of exercise training for patients with unresectable stage III lung cancer candidated to radical treatment. The aim of this study was to evaluate the feasibility of a home-based pulmonary rehabilitation (PR) program and to identify reliable tools in terms of respiratory function, exercise capacity and quality of life.MethodsPatients’ recruitment lasted from April 2020 till February 2022. The PR program was proposed concomitantly to radiation therapy to the first 20 patients (interventional group, IG), and the other 20 patients were identified as an observational group (OG). All patients were assessed at baseline (T0) and after 8 weeks (T2) with 6 minute walking test (6MWT), modified Borg Scale (mBORG), SF-36 questionnaire (SF-36) and pulmonary function test (PFT); after 4 weeks (T1), only SF-36 was administered.ResultsA decrease of 13.8 m in the walked-distance was registered in the OG between T0 and T2 (p = 0.083). Instead, an increase of 56.6 m in the distance walked was recorded in the IG between T0 and T2 (p ≤ 0.001).In the OG, the mBORG scores showed a negative trend. On the contrary, in the IG, these scores showed a slight improvement. In the OG, all the items of SF-36 scores decreased between T0 and T1. In the IG, an increased trend from T0 to T2 was observed for all the items of SF-36. No clinically significant variations were detected from baseline to T2 in both groups regarding PFT.ConclusionThe 6MWT, mBORG and SF-36 resulted as useful tools to assess the role of a PR program. A significant gain in functional exercise capacity and a prevention of the physiological impairment of QoL during radio(chemo)therapy was registered.

The Burden of Fear of Cancer Recurrence in Genitourinary Cancers: A Prospective Study (NCT04535921)

Introduction: Fear of cancer recurrence (FCR) is a challenging and often unaddressed concern, and predictive factors for high FCR remain unclear. Therefore, the aim of the current study was to assess predictive factors for high FCR in patients undergoing surgery for genitourinary cancer. Materials and Methods: Overall, 525 patients were prospectively included. FCR was measured using the validated FCR7 questionnaire prior to surgery and after receipt of the histological result. Family support, religiousness, quality-of-life impairment due to FCR, and distress were determined. Patient and tumor-related factors were compared with FCR levels using Mann-Whitney U test or Wilcoxon test. Multivariate analysis was performed by linear/binary regression. Results: FCR after receipt of the final histology was significantly lower (median 13, range 6–34) than before surgery (median 15, range 6–36, p < 0.001). In univariate analysis, significant impact on preoperative FCR was observed for gender (p = 0.017), age (p = 0.002), working status (p = 0.038), and education (p = 0.002). High impairment of QoL was associated with higher FCR levels (p < 0.001). Comparing tumor-related factors with FCR, we observed significantly higher FCR scores in patients with nonorgan-confined disease (p = 0.011). Conclusion: This study is the first to describe FCR in patients with genitourinary cancers. Surgical treatment improves FCR. Sociodemographic factors like age, female gender, employment, and education were observed to influence FCR levels. Strong correlations between FCR, QoL, and psychological distress indicate the importance of further clinical screening for FCR. Tumor-related factors however seem to play a less prominent role.

Mast cells and tryptase are linked to itch and disease severity in mycosis fungoides: Results of a pilot study.

IntroductionIn mycosis fungoides (MF), the most common cutaneous T-cell lymphoma, itch is a frequent clinical symptom. Whether mast cells (MCs), eosinophils (Eos) or their mediators play a role in MF-associated itch or disease severity is controversially discussed. Here, we explored the role of MC and Eo numbers in the skin as well as blood levels of their mediators in disease severity and itch.MethodsIn 10 patients with MF and 10 matched control subjects we assessed disease severity, itch, and quality of life impairment using dedicated tools such as the mSWAT, ItchyQoL and DLQI. We analyzed skin biopsies and measured serum levels of tryptase, a mast cell mediator, as well as of the eosinophil products eosinophil cationic protein (ECP) and major basic protein (MBP).ResultsThe presence of chronic itch, in four of 10 patients, was associated with significantly higher disease severity (mSwat), larger body surface area affected, and stronger QoL impairment (Itchy-Qol, DLQI). Serum levels of tryptase, but not ECP and MBP, were linked with patient-reported disease severity, body surface area affected, and the presence of itch. Three of the four patients with chronic itch, but none of the six patients without, had tryptase levels above >6µg/l. Numbers of MCs in the papillary dermis were higher in MF skin lesions then in non-lesional skin of MF patients and skin of healthy controls.DiscussionThe MC-mediator tryptase, in MF, is linked to disease activity and impact, most prominently to itch. Our findings call for larger studies that explore the role of MCs, tryptase and other MC mediators as drivers of itch and their role in MF pathogenesis.

Impact of persistent peripheral neuropathy on health-related quality of life among early-stage breast cancer survivors: a population-based cross-sectional study

BackgroundWe explored the impact of persistent sensory and motor taxane-induced peripheral neuropathy (TIPN) symptoms on health-related quality of life (HRQL) among early-stage breast cancer survivors (ESBCS).MethodsA population-based cohort of 884 residual-free ESBCS received a postal questionnaire, including the EORTC chemotherapy-induced PN (CIPN20) and the EORTC QLQ-C30 instruments. Mean scores of QLQ-C30 scales among ESBCS with and without TIPN were calculated and adjusted for confounding factors (age, lifestyle factors, co-morbidities; linear regression analyses). Interpretation of QLQ-C30 results were based on guidelines.ResultsResponse rate was 79%, and 646 survivors were included in the analysis. In median, 3.6 (1.5–7.3) years had elapsed post-taxane treatment. All TIPN symptoms had a significant impact on global QoL, which worsened with increased severity of TIPN. Between 29.5% and 93.3% of ESBCS with moderate-severe TIPN reported a clinical important impairment of functioning and personal finances, 64.3–85.7% reporting “difficulty walking because of foot drop,” and 53.1–81.3% reporting “problems standing/walking because of difficulty feeling ground under feet” had impaired functioning/finances. The difference in mean scores between affected and non-affected survivors was highest for “numbness in toes/feet” and “difficulty walking because of foot drop.” Moderate-severe “difficulty climbing stairs or getting out of chair because of weakness of legs” and “problems standing/walking because of difficulty feeling ground under feet” were associated with the largest clinically important differences on all scales.ConclusionPersistent sensory and motor TIPN is associated with clinically relevant impairment of global QoL, functioning, and personal finances among ESBCS, which increased with level of TIPN severity.

S301: GERMAN AMLCG-SURVIVORSHIP STUDY: QUALITY OF LIFE AND LIFE SATISFACTION IN AML LONG-TERM SURVIVORS

Background: An increasing proportion of patients with acute myeloid leukemia (AML) become long-term survivors. Somatic and psycho-social outcomes in survivors are therefore becoming increasingly important, but little is known about the long-term effects of the disease and its treatment. Aims: The primary aim of this study was to compare quality of life (QoL, measured by the FACT-G questionnaire) and general and health-related life satisfaction (gLS/hLS, measured by the FLZ-M questionnaire) of AML-LTS with normative data of German adults who were not diagnosed with AML. Methods: We designed a comprehensive analysis of AML survivorship outcomes including psycho-social well-being and somatic health status and conducted a questionnaire-based study collecting data from AML long term survivors (AML-LTS). This report focuses on overall and health-related quality of life. Somatic morbidity in AML-LTS is reported separately (Moret et al.). Results: 427 former AML patients who had been enrolled in AMLCG trials (AMLCG-1999, AMLCG-2004, AMLCG-2008) or the AMLCG patient registry, participated in this study between 5 and 18.6 years (y) after their initial AML diagnosis (median, 11.3y). Median age of AML-LTS was 61y (range 28y-93y), and 56% were female. Thirty-eight percent of participants had been treated with chemotherapy alone, while 62% received at least one allogeneic stem cell transplant (alloHSCT). A relapse occurred in 24% of the participants. Unexpectedly, age- and sex-normalized quality of life and general life satisfaction summary scores were significantly higher in AML-LTS (p<.001) compared to adults without the diagnosis of AML. Raw score points of AML-LTS on the FACT-G summary scale also were higher than in age and sex-matched normal adults by a median of 4.7 points (95% CI: 2.82 – 7.2) – a differences that likely is clinically not relevant, considering an established cutoff for clinical relevance of 7 raw score points. No difference between AML-LTS and normal adults was found for health-related life satisfaction (hLS). Using the cutoff for clinical importance (i.e., 7 points below age- and sex-matched population norm), 26.1% of participants reported relevant impairment of overall QoL. To identify factors potentially associated with poor overall QoL, we constructed a logistic regression model including pre-specified cofactors (age, sex, time since initial diagnosis, relapse and alloHSCT) and additional covariables that associated with QoL in univariate analyses (Figure 1). We found that participants with no children, lower educational level, shorter time since diagnosis and altered financial situation reported significantly lower QoL. No influence was found for disease- and treatment related factors including treatment (alloHSCT vs. no alloHSCT), previous relapse, or de novo vs secondary or therapy-related AML. Image:Summary/Conclusion: Unlike previous studies of AML survivorship, our large cohort included a diverse spectrum of patients regarding age, time since diagnosis, and treatment modalities, which allows for new insight into long-term QoL. Our study establishes that overall QoL in AML long-term survivors is comparable to the general population, with further improvement from five years post diagnosis onwards. Importantly, disease- and treatment-related factors, such as prior relapse or alloHSCT, are not associated with overall QoL. However, we were able to identify risk factors for worse QoL, delineating a subgroup of patients that may still have a need for targeted psycho-social interventions five or more years after an AML diagnosis.

MO821: Quality of Life and Depression in Hemodialysis Patients

Abstract BACKGROUND AND AIMS End-stage renal disease (ESRD) has certainly an impact on patients’ health-related quality of life (HRQoL). Depression is, also, highly prevalent in hemodialysis patients. This study aimed to evaluate HRQoL, the prevalence of depression, its associated factors, and its impact on quality of life in our population. METHOD This was a cross-sectional study including 70 hemodialysis patients in Monastir, Tunisia. Depression was evaluated using the Beck Depression Inventory (BDI). Quality of life was assessed with the Short-Form 36. Data were also collected on sociodemographic, laboratory (albumin, parathormone, hemoglobin and phosphorus) and dialysis (dialysis vintage, vascular access and hemodialysis adequacy) characteristics. The analysis was performed with descriptive and analytical statistics. RESULTS Among 70 patients, 64.3% were men. The mean age was 49 ± 15.7 years old. High blood pressure, diabetes and dyslipidemia were the most common comorbidities. Low drug adherence was frequent. The global average score according to the SF-36 was 38.2. The QOL was impaired in 64.2% of the cases. We have identified five variables correlated with impaired QOL: lack of autonomy, a dialysis rhythm of 3 times a week, an age &amp;gt;60 years, low social economic level and living in rural areas. Depression was present in 14.2% of the sample. Depressed patients presented poor quality of life, lower serum albumin and higher parathormone levels. CONCLUSION Our study highlights the high frequency of QOL impairment in patients on hemodialysis. Actions aimed at changing some factors associated with reduced QOL can promote well-being.

The Psychological Impacts of Acne

Objective: To determine the frequency of different category of Dermatology Life Quality Index (DLQI) in patients with Acne Vulgaris visiting to tertiary care hospital. Study Design: Descriptive Cross-Sectional Study. Place and Duration: This study was conducted at the Department of Dermatology, Shaheed Mohtarma Benazir Bhutto Medical University, Larkana, Pakistan during the period from August 23, 2019 to February 22, 2020. Materials and Methods: All patients who fulfilled the inclusion criteria and visited to SMBBMU, Larkana were included in the study. Informed consent was taken after explaining the procedure, risks and benefits of the study. In our study, patients with acne vulgaris were diagnosed on the basis of relevant clinical history and examination. Patients were asked to fill the DLQI questionnaire themselves to assess the DLQI. All the collected data were entered into the proforma attached at the end and used electronically for research purpose. Results: Mean ± SD of age was 25.4±5.2 years. Out of 343 patients, 157 (45.8%) were male and 186 (54.2%) were female. In frequency of different category of dermatology life quality index (DLQI) 44 (12.8%) patients had no effect, 105 (30.6%) had mild, 74 (21.6%) moderate effect, 86 (25.1%) had very large while 34 (9.9%) patients had extreme larger effect. Conclusion: It is to be concluded that his study showed significant impairment of QoL in acne patients. Assurance and counseling along with early treatment of acne vulgaris are important to reduce disease-related psychosocial sequelae. Keywords: Dermatology Life Quality Index, Acne Vulgaris, Influencing Factors, Quality of Life, Psychosocial, Cosmetological Treatments

Predictors of clinically significant quality of life impairment in Parkinson\u2019s disease

Quality of life (QOL) plays an important role in independent living in Parkinson’s disease (PD) patients, being crucial to know what factors impact QoL throughout the course of the disease. Here we identified predictors of QoL impairment in PD patients from a Spanish cohort. PD patients recruited from 35 centers of Spain from the COPPADIS cohort from January 2016, to November 2017, were followed up during 2 years. Health-related QoL (HRQoL) and global QoL (GQoL) were assessed with the 39-item Parkinson’s disease Questionnaire (PDQ-39) and the EUROHIS-QOL 8-item index (EUROHIS-QOL8), respectively, at baseline (V0) and at 24 months ± 1 month (V2). Clinically significant QoL impairment was defined as presenting an increase (PDQ-39SI) or decrement (EUROHIS-QOL8) at V2 ≥ 10% of the score at baseline (V0). A comparison with a control group was conducted for GQoL. GQoL did not change significantly in PD patients (N = 507; p = 0.686) or in the control group (N = 119; p = 0.192). The mean PDQ-39SI was significantly increased in PD patients (62.7 ± 8.5 years old; 58.8% males; N = 500) by 21.6% (from 16.7 ± 13 to 20.3 ± 16.4; p < 0.0001) at V2. Ninety-three patients (18.6%) presented a clinically significant HRQoL impairment at V2. To be younger (OR = 0.896; 95% CI 0.829–0.968; p = 0.006), to be a female (OR = 4.181; 95% CI 1.422–12.290; p = 0.009), and to have a greater increase in BDI-II (Beck Depression Inventory-II) (OR = 1.139; 95% CI 1.053–1.231; p = 0.001) and NMSS (Non-Motor Symptoms Scale) (OR = 1.052; 95% CI 1.027–1.113; p < 0.0001) total scores from V0 to V2 were associated with clinically significant HRQoL impairment at the 2-year follow-up (Hosmer–Lemeshow test, p = 0.665; R2 = 0.655). An increase in ≥5 and ≥10 points of BDI-II and NMSS total score at V2 multiplied the probability of presenting clinically significant HRQoL impairment by 5 (OR = 5.453; 95% CI 1.663–17.876; p = 0.005) and 8 (OR = 8.217; 95% CI, 2.975–22.696; p = 0.002), respectively. In conclusion, age, gender, mood, and non-motor impairment were associated with clinically significant HRQoL impairment after the 2-year follow-up in PD patients.

The Experience of Living with Severe Asthma, Depression and Anxiety: A Qualitative Art-Based Study.

PurposeSevere asthma, depression and anxiety often co-exist and increase disease burden. Currently there are no published studies investigating severe asthma and psychological comorbidity using arts-based methodology. We aimed to (i) illustrate the individual experience of adults living with severe asthma, with and without symptoms of depression and/or anxiety and (ii) to explore common characteristics depicted in artworks between those groups.Patients and MethodsA qualitative arts-based study was conducted. Adults with severe asthma were categorised into two groups according to Hospital Anxiety and Depression Scale scores (<8 on either subscale [SA-D/A] (N=15) or (≥8 on one or both subscales [SA+D/A] (N=15). Art thematic analysis was undertaken using a hybrid approach. The Common-Sense Model of Self-Regulation was used to examine frequencies in artworks.ResultsParticipants with severe asthma alone and severe asthma with depression/anxiety were of older age (median 67 and 63 years respectively). There was greater asthma QoL impairment in participants with psychological comorbidity than without (4.7 ± 8.3 versus 5.8 ± 0.85, p=<0.01). Analysis of art works identified three themes: (1) “darkness” depicting misery, isolation and sadness; (2) “impacts” describing physical and social consequences; and (3) “resilience” illustrating acceptance and perseverance of living with all three conditions.ConclusionArt-based research in severe asthma facilitates detailed exploration of intimate and individual experiences. Darkness, impacts and resilience are common themes emerging from artworks. Understanding these experiences may help guide assessment and treatment of psychological comorbidity in the clinic.