Validated Quality Of Life Questionnaires Research Articles

Associations between 24/7 workforce coverage, organizational challenges, and well-being of emergency radiologists: a national survey.

The last decade has seen a surge in the demand for imaging exams in emergency radiology (ER), necessitating an evolution in organizational systems for departments offering round-the-clock care, while safeguarding patient care quality and physician well-being to prevent burnout. To develop a nationwide overview of ER organizations in France and identify structures that promote job satisfaction. Two surveys were sent to 709 radiological centers across France from March to June 2022, inquiring about organizational aspects and quality of life (QOL), incorporating four validated QOL questionnaires. The organization of each center was mapped, and correlations between respondent characteristics and mental health were analyzed using Pearson's and Wilcoxon tests. A total of 284 centers answered the organizational survey, with a response rate of about 41.6%. Among them, there were 32 university hospitals, 208 general hospitals, 2 teaching army hospitals, and 42 private facilities. Of these, night-time operations showed 14% on-site coverage, 12% on-call from home, 69% utilized external teleradiology, and 4% used in-house teleradiology. These trends persisted over weekends and holidays. Regarding the quality of working life, academic, general, and private radiologists are more satisfied with their practice compared to trainees. Depersonalization, part of the three dimensions of burnout, was high in every class, at 60% (n = 210/350). Outside of university hospitals, most radiology centers in France no longer have on-site radiologists during off hours. Residents are prone to lower job satisfaction and quality of life than more experienced radiologists. The survey illustrates how French ER is structured, pointing out the escalating significance of teleradiology and noting that radiologists generally experience high job satisfaction while also confronting typical organizational challenges. The need for continuous radiology coverage comes with unique logistical challenges, especially in ER. Night shifts show a significant reliance on teleradiology services, especially by external companies. Pay, shift patterns, and seniority affect the well-being of emergency radiologists, particularly the residents.

Association of quality of life (QoL) with mortality in patients with adenoid cystic carcinoma using an internationally validated QoL questionnaire (EQ-5D-5L): A new baseline.

6097 Background: An evaluation of impact on quality of life (QoL) is required for regulatory approval and reimbursement of new drug therapies. Almost all studies of new therapies in adenoid cystic carcinoma (ACC) are non-randomised with no comparator QoL measure. To support Health Technology Assessments and the evaluation of the clinical utility of these therapies, we sought to determine the QoL measures in a cohort of ACC patients and to assess for change over time and associations with clinical or prognostic factors. Methods: An internationally validated QoL questionnaire (EQ-5D-5L) was completed by ACC patients referred to an experimental medicine centre between 2019 and 2024, who provided written informed consent to analysis. EQ-5D value scores (EQV) were calculated from each questionnaire using the EuroQol England value set. A Cox proportional hazards model was built with EQV as a time dependent variable, with a variant using penalised smoothing splines to assess linearity. A base non-linear mixed effects (nlme) model was constructed between time and EQV. The relationship between EQV and other predictors (NOTCH1 alteration status, age at diagnosis, sex, local and/or metastatic recurrence, and primary site of disease) were tested against the base model using variant models built for each predictor. Both analyses used R Statistical Software (v4.3.2) with survival and nlme packages in Rstudio (v2023.12.0.0). Results: Between 2019 and 2023, 563 EQ-5D-5L questionnaires were completed by 161 patients with ACC (median 2 responses/patient, range 1 to 20). NOTCH1 alteration was seen in 8% (13/161), median age at diagnosis 49 years (range 17 to 81), 40% male, 36% (58/161) had a major salivary gland as primary site, and 14% had local recurrence, 46% metastatic recurrence and 26% both for 86% total with recurrent disease (139/161). For all 161 patients, median EQV was 0.81 (range -0.22 to 1.0); an EQV of 1 is ideal QoL and 0 is QoL as bad as death. The median EQV for the clinical subgroups were 0.83 (NOTCH1, IQR 0.74-0.87), 0.84 (no recurrence, IQR 0.75-0.92), 0.80 (local recurrence only, IQR 0.70-0.86), 0.81 (distant metastasis only, IQR 0.70-0.92), 0.83 (distant and local, IQR 0.75-0.92), 0.84 (major primary site, IQR 0.75-0.92), 0.81 (other primary site, IQR 0.70-0.89), and no statistical differences were identified between these groups. However, a decrease in EQV from 1 to 0 was associated with an eightfold increase in risk of death in the total population (HR= 0.118, 95% CI 0.057 to 0.244, p= <0.001). There was a significant non-linear relationship between EQV and survival over time (p=0.011), with a greater marginal effect on survival for EQVs >0.81. Conclusions: For patients with ACC, a worse QoL as measured by EQ-5D-5L was associated with a significantly increased risk of death. NOTCH1 and disease recurrence were not associated with a worse QoL.

Body and mind and self-consciousness awareness workshops: Improving quality of life in patients with cancer.

e24081 Background: Cancer patients, commonly experience disease and treatment related stress, anxiety and difficulties coping with life. Data suggests that body and mind are interrelated and can influences patients' quality of life (QOL). Objectives: The study aimed to evaluate the impact of patients body and mind work developing self consciousness awareness and changing behavioral patterns of women’s cancer patients, on quality of life and coping abilities. By evaluation of QOL, sleep disorders and anxiety tests done during and following our workshop. Methods: The study conducted at the Women's Cancer Center of Tel Aviv Sourasky Medical Center in Tel Aviv Israel between 2022-2024. Female cancer patients and survivors, were enrolled in workshops teaching self consciousness awareness development according to the Metaism methodology. Each workshop with groups of 10-15 patients was conducted weekly for three months, The groups were led by dedicated moderators and supervised by a psychiatrist. Patients completed a validated QOL questionnaire, sleep disorder evaluation and anxiety questionnaires, upon enrollment and every month during the workshop and up to a year from completion of the workshop. Results: one-hundred and twofemale patients diagnosed with cancer and treated at multiple cancer centers were included in the study. Patient mean age was 57 (26-75) years. Patient diagnoses included breast, ovarian, uterine, cervical, and other cancers (58%, 22%, 7%, 5%, respectively). Significant improvement was observed in the QOL assessment at the 5th week of the workshop, overall educational well-being indicator at the 3rd week of the workshop, emotional well being at the 3rd week of the workshop, physical well-being at the end of follow up. Conclusions: The study demonstrated that integrating the metaism methodology of self consciousness awareness development workshops significantly improved patient coping ability and QOL. Further investigation of larger cohorts is warranted.

Aesthetics treatment with injectable fillers in patients with cancer: Safety and quality of life during active antineoplastic therapy.

e23245 Background: Patients treated with antineoplastic treatment,commonly experience physical changes,secondary to the disease,weight loss,stress,and cancer therapy side-effects.Injectable fillers,offer effective and safe soft-tissue manipulations improving patients’ positive body image.While FDA-approved fillers are used in various medical settings,data on the safety and implications on quality of life(QOL)in oncology patients during active cancer therapy are limited.The study aimed to assess oncology patients' safety,QOL and both physician and patients’ perceived skin changes when fillers are used during active cancer therapies. Methods: The study was conducted at the Women's Cancer Center and Dermatology Department between 2021-2023.Female oncology patients treated with antineoplastic therapies completed a validated QOL questionnaire,dermatologist and patient self-evaluation,prior and following aesthetic intervention.Patients were randomly assigned to receive aesthetic treatments. Results: 127 female patients diagnosed with cancer,and treated at a single cancer center were included in the study.Patient mean age was 57 years.Patient diagnoses included breast,ovarian,uterine,cervical,and other cancers(58%, 22%,7%,5%,8%,respectively).31 (24%) patients were randomized to receive filler treatment.106(83%)patients were not treated with fillers,patients were either not randomized to filler treatments,or attributing their abstention to their cancer diagnosis,potential risks shared by other patients,or their treating oncologist.Patients receiving fillers were treated with chemotherapy,chemotherapy and biological agents,biological agents,hormonal therapies,immunotherapy,biological and hormonal therapy(39%,23%,10%,19%,6%,3%,respectively).3 independent dermatologists assessed improved aesthetic parameters following filler treatment,patients appeared less ill,sad,distracted.6-8 weeks post filler injections,there was a markedly improved QOL score,and noticeable positive skin changes by dermatologists and patients evaluation.Patients appeared less tired,angry,worried(45%,38%,35%,respectively).Most patients were satisfied following injections(81%) and planned future aesthetic treatments.More than half of the patients(55%)had no adverse events.Thirteen patients experienced minor dermal side effects (grade 1,42%).While 1 patient developed delayed inflammatory reaction 6-months post injection(grade 2,3%). Conclusions: Aesthetic treatment with filler injections while on anti-cancer treatment,with minimal side effects,statistically improved patient QOL and dermatological measures,enhanced dermatologist and patient sense of positive body image,demonstrating that injectable fillers can be safely recommended to patients receiving anti-neoplastic therapies.

SGLT2 Inhibitors, Functional Capacity, and Quality of Life in Patients With Heart Failure

The associations of sodium glucose cotransporter-2 inhibitors (SGLT2is) with reduction in mortality and hospitalization rates in patients with heart failure (HF) are well established. However, their association with improving functional capacity and quality of life (QOL) has been variably studied and less reported. To provide evidence on the extent to which SGLT2is are associated with improvement on objective measures of functional capacity and QOL in patients living with HF. The MEDLINE, EMBASE, and Cochrane databases were systematically searched for relevant articles on July 31, 2023. Randomized, placebo-controlled clinical trials reporting the effect of SGLT2i on functional outcomes of exercise capacity (peak oxygen consumption [peak VO2] or 6-minute walk distance [6MWD]) and/or QOL using validated questionnaires for patients with HF were included. Data were extracted by 2 authors following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines, and a meta-analysis using the restricted maximum likelihood random-effects model was conducted. Outcomes of interest included changes in peak VO2, 6MWD, and Kansas City Cardiomyopathy Questionnaire-12 total symptom score (KCCQ-TSS), clinical summary score (KCCQ-CSS), and overall summary score (KCCQ-OSS). In this meta-analysis of 17 studies, 23 523 patients (mean [range] age, 69 [60-75] years) were followed over a period ranging from 12 to 52 weeks. Four studies included peak VO2 as an outcome, 7 studies included 6MWD, and 10 studies reported KCCQ scores. Mean (SD) left ventricular ejection fraction was 43.5% (12.4%). Compared with controls, patients receiving SGLT2i treatment experienced significant increases in peak VO2 (mean difference [MD], 1.61 mL/kg/min; 95% CI, 0.59-2.63 mL/kg/min; P = .002) and 6MWD (MD, 13.09 m; 95% CI, 1.20-24.97 m; P = .03). SGLT2i use was associated with increased KCCQ-TSS (MD, 2.28 points; 95% CI, 1.74-2.81 points; P < .001), KCCQ-CSS (MD, 2.14 points; 95% CI, 1.53-2.74 points; P < .001), and KCCQ-OSS (MD, 1.90 points; 95% CI, 1.41-2.39 points; P < .001) scores. Subgroup analysis and meta-regression demonstrated almost all improvements were consistent across ejection fraction, sex, and the presence of diabetes. These findings suggest that in addition to known clinical associations with mortality and hospitalization outcomes, SGLT2i use is associated with improvement in outcomes of interest to patients' everyday lives as measured by objective assessments of maximal exercise capacity and validated QOL questionnaires, regardless of sex or ejection fraction.

Comparing the Quality of Life of Patients and their Family Members with Dermatological and other Chronic Conditions, in The Bahamas

Background &amp; Objectives: Impact of dermatological and other chronic conditions not only affects the quality of life (QoL) of patients but also that of their family members. This pilot study aimed to compare the QoL impact of dermatological and other chronic conditions on patients with the QoL impact on their family members. Methods: A cross-sectional study using validated QoL questionnaires was conducted. In the dermatological group, patients (&gt;17 years) completed the Dermatology Life Quality Index (DLQI) questionnaire, while children (4-16 years) completed the Children’s Dermatology Life Quality Index (CDLQI) questionnaire. Family members (&gt;18 years) completed both Family Reported Outcome Measure (FROM-16) and Family Dermatology Life Quality Index (FDLQI) questionnaires. In the other chronic conditions group, patients (&gt;17 years) completed the World Health Organization Quality of Life -BREF (WHOQoL-BREF) questionnaire and children (4-17 years) completed The Revised Children’s Quality of Life Questionnaire (KINDL-r: Kiddy KINDL, Kid KINDL and Kiddo KINDL). Family members completed the FROM-16 questionnaire. Data were analysed using IBM SPSS™ statistical software. Results: Forty-four participants completed the study. In the dermatological group (n=26), there was a weak negative correlation between DLQI and FDLQI scores (r= –0.23, p=0.55) not between DLQI and FROM-16 (r = –0.04, p=0.92). There was a very strong positive relationship between both CDLQI and FDLQI (r=0.83, p=0.17) and CDLQI and FROM-16 (r=0.82, p=0.18). Although not statistically significant, there may be a correlation between the FROM-16 and FDLQI scores for family members of dermatology patients. In the chronic conditions group (n=18) the mean score of WHOQoL-BREF was 90.5 (SD=13) with a significant negative inverse relationship to FROM-16 (r= –1.000, p=&lt;0.001). The KINDL-r scores (mean=66, SD =11) showed no significant correlation (r= –0.24, p=0.61) with FROM-16 scores (mean=9.6, SD=3.7). Conclusion: The impact of a patient’s dermatological or other chronic condition can not only negatively affect the patient’s QoL but also the QoL of their family members.

Tailor-made three-dimensional printing vaginal pessary to treat pelvic organ prolapse: a pilot study.

This study aimed to apply three-dimensional (3D) printing technology to treat women with pelvic organ prolapse (POP) and to evaluate efficacy based on the improvement by quality of life (QOL) questionnaires. This was a pilot study at a tertiary urogynecology unit in Taiwan. Between January 2021 and June 6, 2021, participants who opted for self-management using Gellhorn pessaries to treat symptomatic POP were enrolled. For each woman, the original Gellhorn pessary was placed into the vagina to restore the prolapsed tissues and under transvaginal ultrasound guided to evaluate the gap which the Gellhorn pessary cannot cover. Otoform (an impression silicone) was used to make a model and have it hooked onto Gellhorn pessary (template). We collected templates and then applied 3D printing to customize the silicone vaginal pessary. All women completed multiple validated QOL questionnaires at baseline and at 3 and 6 months. Six women completed the study. The QOL questionnaires revealed significant improvements across the board. Our study demonstrates that a tailor made 3D pessary can be used for women with POP. A customized pessary can be made with the help of transvaginal ultrasound and 3D printing technology.

Functional and quality-of-life outcomes following salvage surgery for recurrent squamous cell carcinoma of the head and neck: a systematic review and meta-analysis.

Recurrent head and neck squamous cell carcinomas (HNSCC) are frequently managed with salvage surgery, but the impact these operations have on function and quality-of-life (QoL) is understudied. This review aimed to provide a quantitative and qualitative assessment of the functional and QoL effects of salvage surgical procedures. Systematic review and meta-analysis were conducted of studies reporting QoL and function following salvage HNSCC resections. The search identified 415 articles and 34 were selected for inclusion. Pooled random effects analysis revealed long-term feeding and tracheostomy tube rates of 18% and 7%. Pooled long-term feeding tube rates in open oral and oropharyngeal, transoral robotic, total and partial laryngectomy surgeries were 41%, 25%, 11% and 4%. Eight studies used validated QoL questionnaires. Functional and QoL outcomes from salvage surgery are acceptable, but appear to be worse following open procedures. Prospective studies measuring changes over time are needed to assess these procedures impact on patient well-being.

EFFECT OF BIOMASS SMOKE EXPOSURE ON QUALITY OF LIFE IN UGANDAN PATIENTS TREATED FOR TB

EFFECT OF BIOMASS SMOKE EXPOSURE ON QUALITY OF LIFE IN UGANDAN PATIENTS TREATED FOR TB

O010 The impact of intravenous iron on physical activity levels and quality of life in advanced cancer: results from the ICARUS randomised controlled trial

Abstract Introduction Anaemia and fatigue are highly prevalent in advanced cancer. Intravenous iron (IVI) has shown promise as an effective treatment for anaemia across a number of conditions. For the first time, we explore the impact of IVI on physical activity and quality of life (QoL) in advanced, inoperable cancer. Methods We randomised anaemic, fatigued patients with advanced solid cancers to receive either IVI (iron isomaltoside) or placebo (0.9% NaCl) in a double-blind design. Activity was assessed using a pedometer (Fitbit Flex 2) for 8 days pre- infusion and at 4 and 8 weeks post-infusion. The minimum clinically important difference (MCID) was defined as 600 daily steps. Three validated QoL questionnaires were completed at the same timepoints. Results 34 patients were recruited over 15 months (17 IVI, 17 placebo). Haemoglobin was higher with IVI at 4 weeks (MD 7.3g/L, P=0.047) and 8 weeks (MD 4.3g/L, P=0.13). At 8 weeks the mean difference in daily steps was 1707 (1142) steps (IVI +318 [1195] from baseline; placebo -1658 [2846]). On QoL measures global health (MD 15.8, P=0.027) and social functioning (MD 14.9, P=0.019) improved with IVI at 4 weeks. Fatigue scores exceeded the intergroup MCID for IVI at both follow up timepoints (week 4 MD 3.38 [-14.94–8.18], P=0.548], week 8 MD 3.49 [-17.52–10.53], P=0.609). Conclusion IVI maintained physical activity and improved fatigue specific QoL. Placebo was associated with a significant decline activity and fatigue specific QoL. IVI may delay the functional decline experienced with advanced cancer. Take-home message Intravenous iron led to clinically meaningful improvements in quality of life and physical activity in anaemic patients with advanced cancer.

Loss of smell in patients with aspirin-exacerbated respiratory disease impacts mental health and quality of life.

The impact of anosmia on quality-of-life (QoL) for patients with aspirin-exacerbated respiratory disease (AERD) is poorly understood. We aimed to investigate how the severity of smell loss and olfactory dysfunction (OD) in patients with AERD affects their QoL, mental health and physical well-being. Five validated QoL questionnaires (Sinonasal Outcome Test-22, Asthma Control Test, Healthy Days Core Module-4, Short Form-36 and Patient Health Questionnaire-4) and two newly developed questionnaires assessing severity and consequences of OD were electronically sent to all 2913 patients in the Brigham and Women's Hospital AERD registry. Responses were received from 853 participants for analysis. Overall, 85% of participants reported a present diminished sense of smell and/or taste, and 30% categorized their OD severity was, "as bad as it can be." There were significant relationships between the severity of self-reported OD and both psychological distress and general health scores, even after adjusting for asthma control. Additionally, incidence rates for physically and mentally unhealthy days in the prior month were higher for patients with moderate or severe OD than for normosmic patients. Patients with diminished smell responded that they could not identify spoiled food (86%), did not enjoy food (71%), felt unsafe (63%) and had encountered dangerous situations (51%) as consequences of their OD. Anosmia and hyposmia severely impact the physical, emotional and mental health of AERD patients, and lead to safety concerns in their daily lives. The importance of olfaction and the relevance of OD to patients' QoL should be acknowledged and evaluated by clinicians caring for these patients.

Abstract 10757: Patient-Reported Quality of Life Outcomes in Hypertrophic Cardiomyopathy Patients

Background: Few studies have systematically assessed quality of life (QOL) in hypertrophic cardiomyopathy (HCM) patients not meeting the septal reduction therapy (SRT) threshold, but require avoiding isometric exertion and weightlifting. We prospectively studied a newly developed QOL instrument to examine the associations between patient characteristics and self-reported QOL scores in HCM patients not anticipated to undergo SRT for at least 6 months. Methods: A single-center, prospective sample of 51 adult HCM patients (54±14 years, mean interventricular septum thickness = 1.7±0.4cm, 65% with left ventricular outflow tract (LVOT) obstruction, mean provokable LVOT gradient 65±42 mmHg, 59% men) completed a baseline 70-item QOL instrument, adapted from validated QOL questionnaires. All patients signed informed consent. Results: Mean self-reported QOL scores (on a 5-point Likert scale with higher scores indicating higher QOL) were as follows: physical function (3.5±1), depression (3.7±1), anxiety (3.6±1), post-traumatic stress disorder (PTSD) (3.7±1), social function (4.1±1), spiritual acceptance of diagnosis (3.8±1), self-efficacy (4±1), and resilience (4±1). Men vs. women reported higher physical function (3.9±1 vs. 2.9±1), less depression (4±1 vs. 3.3±1), less anxiety (3.8±1 vs. 3.3±1), and higher social function (4.3±0.7 vs. 3.8±1) (all p&lt;0.05). Patients with obstructive HCM reported lower physical function scores (3.3±0.8) vs. non-obstructive HCM (3.8±0.8), p=0.03. Symptomatic patients reported lower physical function (3.2±0.8 vs. 4.3±0.5), social function (3.8±0.8 vs. 4.5±0.6) and worse depression (3.5±0.7 vs. 4.3±0.6), anxiety (3.4±0.8 vs. 4.1±0.7) and PTSD (3.5±0.8 vs. 4.3±0.9) scores (all p&lt;0.01). Presence of an implantable cardioverter defibrillator (ICD) was associated with lower vs. higher physical (2.9±0.4 vs. 3.5±1) and social function (3.6±1 vs. 4.1±1) (all p&lt;0.05). Conclusion: In HCM patients not requiring SRT, higher physical function scores were significantly associated with a better self-perceived overall health. Being a woman, having LVOT obstruction, presence of a defibrillator and presence of symptoms was significantly associated with worse perceived physical and social function.

Abstract 10749: A Prospective Study of Health-Related Quality of Life Outcomes in Thoracic Aortopathy Patients

Introduction: Health-related quality of life (QOL) outcomes in thoracic aortopathy (TA) patients who have not yet met the surgical threshold, but need significant lifestyle/weightlifting restrictions, are not well understood. We prospectively studied a newly developed QOL instrument to examine the associations between patient characteristics and self-reported QOL scores in TAA patients not anticipated to undergo aortic intervention for at least 6 months. Methods: All 128 adult TA patients (57±10 years, mean thoracic aortic diameter = 4.4±0.3cm, 77% male) were recruited prospectively as a single center and completed a baseline QOL instrument. The 70-item QOL instrument was adapted from validated QOL questionnaires. All patients signed informed consent. Results: Mean QOL scores for the eight scales of the instrument (range, 0 to 5, with 5 reflecting best function/QOL) were self-reported and as follows: physical function (4.2±0.8), depression (3.9±0.8), anxiety (3.8±0.9), post-traumatic stress disorder (PTSD) (4.1±0.9), social function (4.4±0.6), spiritual acceptance of diagnosis (3.6±0.7), self-efficacy (4.2±0.7), and resilience (4.1±0.6). Higher physical function score was associated with higher emotional (β=0.67, p&lt;0.001) and social function (β=0.52, p&lt;0.001) scores. Higher physical function (β=0.535), less depression (β=0.47), less anxiety (β=0.45), less PTSD (β =0.43), and higher social function (β=0.281) scores were all significant predictors of higher perceived overall health (all p&lt;0.001). The degree of TA dilatations had no significant association with lower social function (β=-0.89, p=0.65), lower self-efficacy (β=-2.73, p=0.21), or lower resilience. Conclusion: In TA patients not requiring aortic surgery, higher physical, emotional, and social function scores were significantly associated with self-perceived overall health. However, the actual size had no significant association with these metrics. Further research is needed to elucidate trends of patient-reported QOL and their correlation to clinical/imaging changes.

Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

IntroductionThe supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).MethodsParticipants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC).ResultsIn total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers.ConclusionThis research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

Quality of life after extended lymph node dissection for colon cancer

Aim: to evaluate the effect of the lymphadenectomy (LD) level on the quality of life (QoL) in patients who underwent laparoscopic colon resection for colon cancer.Patients and methods: the study included 86 patients who underwent surgery for colon cancer from January 2018 to August 2020. The patients were randomized in 2 groups: the main group — with D3 lymphadenectomy — 41 patients and the control group — with D2 — 45 patients. Two validated QoL questionnaires (QLQ-C30 v. 3.0, QLQ-CR29 v. 2.1) of the European Organization for Research and Treatment of Cancer (EORTC) were applied by the patients on the day before the surgery and on the 30th day after the surgery and were used for the further analysis.Results: there were no significant differences between the groups in gender, age, weight, height, BMI, assessment of functional and physical status according to the ASA and ECOG scales, incidence of comorbidities, tumor site, type and volume surgical of procedures. Regardless of the level of lymphadenectomy, the significant improvement in QoL after surgery was obtained (pQoLD3 = 0.005, pQoLD2 = 0.023) in both groups. The significant increase in the incidence of diarrhea by 2.65 times was detected after laparoscopic right hemicolectomies with extended lymphadenectomy (p = 0.042). Also, there was a significant 2.45 fold increase in the risk of developing erectile dysfunction (ED) after D3 lymphadenectomy in the patients who underwent laparoscopic resections of the left colon in the early postoperative period (p = 0.031).Conclusion: the analysis of physical, social functioning and symptomatic scales has established that in patients who underwent colon resection for cancer of the left colon erectile dysfunction occurred to a greater extent after D3 LD, whereas diarrhea was more likely to develop after resection of the right colon with D3 LD than with D2 LD.

Health-Related Quality of Life in Patients With ANCA-Associated Vasculitis and Sinonasal Involvement: A Single-Center Cross-Sectional Study.

The aim of this study was to assess the impact of sinonasal morbidity on quality of life (QoL) in antineutrophil cytoplasmic antibody-associated vasculitis (AAV). This cross-sectional case-control study enrolled 71 patients-44 AAV cases with (ear, nose, and throat [ENT]-AAV) or without ENT involvement (non-ENT-AAV) undergoing multidisciplinary evaluations and 27 chronic rhinosinusitis (CRS) cases. Three validated QoL questionnaires (Sino-Nasal Outcomes Test-22 [SNOT-22], Nasal Obstruction Symptom Evaluation [NOSE], and Short-Form 36) were administered, and the 3 groups were compared. The ENT-AAV patients were significantly younger (p = 0.01), with less antineutrophil cytoplasmic antibody positivity frequency (p = 0.035) and lower renal involvement (p = 0.003) than the non-ENT-AAV patients.The SNOT-22 questionnaire demonstrated significantly greater sinonasal morbidity in ENT-AAV patients compared with CRS patients (p < 0.001). The NOSE score of ENT-AAV patients was comparable to those of CRS patients, but higher than that of non-ENT-AAV patients (p < 0.001). The SNOT-22 and NOSE scores positively correlated with disease activity (p = 0.037; p = 0.004, respectively). Short-Form 36 domain-by-domain analysis revealed a significantly poorer QoL in ENT-AAV patients, especially with physical functioning being progressively impaired in CRS, non-ENT-AAV, and ENT-AAV patients (p < 0.001). No significant differences in QoL came to light when AAV patients were stratified according to current systemic o local treatments. The QoL in AAV patients is significantly reduced, especially in the presence of ENT involvement. The AAV-related nasal morbidity is consistent and comparable to that reported by CRS patients. It significantly affects patients' QoL and in particular social functioning, leading to limitation in daily/work activities. Organ-focused questionnaires and multidisciplinary management are warranted to pursue a treat-to-target approach in these patients.

Comparison of Quality of Life among Patients with Oro-Hypopharyngeal Cancer after Tonsillectomy and Panscopy Using Transoral Robotic Surgery: A Pilot Study

Studies have shown lower treatment-related morbidity when using transoral robotic surgery (TORS) compared to conventional surgery. Patients investigated for oro- and hypopharyngeal cancer (T1, T2) were compared concerning quality of life (QoL) after tonsillectomy and TORS using validated QoL questionnaires: QLQ-C30 and QLQ-H&N35. The patients treated with TORS showed a higher pain score and thus also a higher need for painkillers, whereas they had lower values on self-assessment of anxiety/depression using the Hospital Anxiety and Depression Scale score. The pre- and postoperative information given did not meet the expectations of the patients treated with conventional surgery. The present data show advantages of the TORS technique from the patients’ perspective. Even if patients treated with TORS are in need of more painkilling treatment, they cope better with the long-term effects of treatment, as judged by self-assessment of anxiety and depression.

Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study.

Research on tuberous sclerosis complex (TSC) to date has focused mainly on the physical manifestations of the disease. In contrast, the psychosocial impact of TSC has received far less attention. The aim of this study was therefore to examine the impact of TSC on health, quality of life (QoL), and psychosocial well-being of individuals with TSC and their families. Questionnaires with disease-specific questions on burden of illness (BOI) and validated QoL questionnaires were used. After completion of additional informed consent, we included 143 individuals who participated in the TOSCA (TuberOus SClerosis registry to increase disease Awareness) study. Our results highlighted the substantial burden of TSC on the personal lives of individuals with TSC and their families. Nearly half of the patients experienced negative progress in their education or career due to TSC (42.1%), as well as many of their caregivers (17.6% employed; 58.8% unemployed). Most caregivers (76.5%) indicated that TSC affected family life, and social and working relationships. Further, well-coordinated care was lacking: a smooth transition from pediatric to adult care was mentioned by only 36.8% of adult patients, and financial, social, and psychological support in 21.1, 0, and 7.9%, respectively. In addition, the moderate rates of pain/discomfort (35%) and anxiety/depression (43.4%) reported across all ages and levels of disease demonstrate the high BOI and low QoL in this vulnerable population.

Anterior-Apical Transvaginal Mesh (Surelift) for Advanced Urogenital Prolapse: Surgical and Functional Outcomes at 1 Year

To determine the objective and subjective outcomes of pelvic organ prolapse (POP) surgery using a modified Surelift system (Neomedic International, Barcelona, Spain) and to evaluate surgical complications and postoperative impact on quality of life (QOL) and lower urinary tract symptoms. Retrospective cohort study. Tertiary-care university hospital. Patients with symptomatic anterior or apical POP stage III and above. All patients underwent pelvic reconstructive surgery with a modified Surelift transvaginal mesh kit. Eighty-three women who underwent pelvic reconstructive surgery with a modified Surelift for symptomatic anterior or apical prolapse stage III and above from April 2018 to January 2019 were reviewed retrospectively. All completed a 72-hour voiding diary, urodynamic study, and multiple validated QOL questionnaires at baseline and at between 6 and 12 months postoperatively. Descriptive statistics were used for demographics and perioperative data. Paired-samples t test and the McNemar test were applied for comparison of pre- and postoperative continuous and categoric data, respectively. The primary outcomes were the objective cure of POP, defined as anterior and apical prolapse Pelvic Organ Prolapse Quantification System ≤ stage I, and subjective cure on the basis of negative answers to Pelvic Organ Prolapse Distress Inventory 6. The objective and subjective cure rates at 1 year were 97.6% and 92.8%, respectively. There were significant improvements in QOL scores postoperatively. Although bladder outlet obstruction improved, de novo urodynamic stress incontinence and stress urinary incontinence were increased at 18.9% and 21.6%, respectively, at 1-year follow-up. The mesh extrusion rate was 4.8%. A modified Surelift has good objective and subjective cure rates at 1 year postoperatively with 4.8% mesh extrusion rate. There was significant improvement in lower urinary tract symptoms and QOL. De novo urodynamic stress incontinence at 6 months to 12 months was increased, but it was not sufficiently bothersome to warrant surgery.

No improvement in quality of life in children with epilepsy treated with the low glycemic index diet

BackgroundUp to 30% of children with epilepsy show a poor therapeutic response to pharmacologic treatment. Ketogenic diets, including the less strict low glycemic index treatment (LGIT), may improve seizure control in pharmacoresistant epilepsy. However, little is known about the quality of life (QoL) in children on LGIT. To explore psychosocial implications of the LGIT on pediatric patients and their caregivers, we have conducted a pilot study to explore the QoL of children and adolescents on the diet. MethodsPediatric patients on LGIT and their parents completed standardized, validated QoL questionnaires (Pediatric Quality of Life Epilepsy Module), one retrospectively and one while being on LGIT. An additional questionnaire included two open-ended questions in order to gain a better understanding of personal experiences of families. ResultsWe enrolled six patients with epilepsy on LGIT between the age of 3 and 13 years. Self-reported QoL decreased in all adolescents, regardless of improvement in seizure control. Parent-reported QoL improved in three of six participants, remained stable in one, and decreased in two patients (both displayed no seizure improvement). Parents and adolescents reported positive experiences of trying new foods and being more health conscious, as well as negative themes such as social isolation and meal preparation difficulties. ConclusionsThe lack of improvement in patient-reported QoL points towards an overall negative impact of the LGIT on patient well-being, despite positive effects on seizure control. Our preliminary results indicate that the benefits of seizure control may subjectively be outweighed by adverse social effects of the LGIT. Families should be made aware of psychosocial risks of the diet. Whenever possible, children should be part of the therapeutic decision-making process. Larger prospective studies are required to fully assess the overall impact of the LGIT.