Quality Of Life Issues Research Articles

(147) Analysis of Sexual Dysfunction Development among Male and Female Living Kidney Donors

Abstract Introduction The need for kidney donations in patients with end-stage kidney disease has continued to exceed the number of deceased donor transplants, signifying the need for the continued growth, sustainability, and success of living kidney donation. Following donation, living kidney donors have excellent survival rates with mixed data regarding long-term outcomes of renal failure, hypertension, and proteinuria. However, no studies to our knowledge have looked at differences in the development of long-term sexual dysfunction following living kidney donation, a potentially serious quality of life issue. Objective To analyze differences in five-year sexual dysfunction outcomes among male and female living kidney donors using the US Collaborative Network within the TriNetX database, a federated network of EMR data from multiple healthcare organizations across the United States. Methods We used the TriNetX database to perform a propensity score-matched cohort study comparing five-year outcomes of sexual dysfunction development among adult (≥18) male living kidney donors (Male) and female living kidney donors (Female) from December 2013 to December 2022. Living kidney donors were defined as the presence of one diagnostic code and one procedural code. Patients were excluded from the study if they had any instance of diagnosed transplant status (by ICD-10) or transplantation procedures (by CPT) prior to the kidney donor status. Patients were matched on age, sex, race, ethnicity, marital status, diabetes mellitus, cardiovascular disease, personal history of genitourinary disease, presence of urogenital implants, mood disorders, BMI, tobacco and alcohol use, and problems related to lifestyle and socioeconomic circumstances. Primary outcomes analysis included 5-year hazard ratio of diagnosed decreased libido, sexual dysfunction (composite of new diagnosed male ED, vaginismus/dyspareunia, infertility, orgasmic disorders, arousal/desire disorders, or unspecified), UTI, and STDs. Secondary outcomes included sex counseling or problems in relationship with spouse or partner. Results There were 2,821 patients in each cohort after matching (Male, Female). Mean age of the cohort was 42.7 ± 12.7, 73.3% were White, and 10.8% were Hispanic/Latino (p >0.05). At 5-years, Kaplan-Meier analysis revealed that the Male donor cohort had a significantly higher hazard ratio (HR) than Female donors for sexual dysfunction (HR: 3.006, 95% Confidence Interval [CI]: 1.761,5.131). Between the cohorts, 39 (1%) Male patients developed ED and ~10 (<1%) Female patients developed vaginismus/dyspareunia within 5 years. No significant difference was found for the development of sexual arousal disorders/desire disorders (0.17% vs 0.06%, p = 0.052), orgasmic disorders (0.03% vs 0.03%, p = 0.99), decreased libido (0.48% vs 0.85%, p =0.94) and STD’s (0.72% vs 0.89%, p = 0.70). For secondary outcomes, no significant difference was found for the 5-year hazard of need for sex counseling or interpersonal relationship issues. Conclusions In our analysis of this large, real-world database, we found that male living kidney donors had higher rates of sexual dysfunction development 5-years post-living kidney donation. While living kidney donation is a safe, viable, and excellent alternative to deceased kidney donation, clinicians and living donors should both be aware about the potential association of developing sexual dysfunction post-donation. Disclosure No.

Quality of life issues in rural settlements: Assessment by social media users

Disparity in the quality of life of people living in rural and urban areas is among the major problems, often leading to greater depression among the rural population compared to those in urban areas who have access to a high standard of living. The goal of this study was to identify the issues of the quality of life that are fundamental from the point of view of rural settlements and typical for the rural population in various regions of the Russian Federation with diverse geographical, socioeconomic, and demographic characteristics. The practical relevance of our study is based on the identification of the scope of typical problems related to the quality of life in rural areas. The fundamental value of this study is the significance of digital tracks, which can serve as a source of information.The data sources included messages and posts discussing various quality of life aspects of the rural population published by VKontakte. For this study, we used messages and posts with negative implications from communities in rural settlements in ten Russian regions. These issues include housing infrastructure and utilities, transportation, the environment, telecommunications, banking, healthcare, and education.

Symptoms, Mental Health, and Quality of Life Among Patients After COVID-19 Infection: A Cross-sectional Study in Vietnam.

This study was conducted to characterize the symptoms, mental health, quality of life (QoL), and associated factors following the coronavirus disease 2019 (COVID-19) infection. This cross-sectional study included 394 participants previously infected with COVID-19 in Ho Chi Minh City, Vietnam. Mental health was assessed using the 21-item Depression, Anxiety, and Stress Scale (DASS-21). Participants self-reported health-related QoL was measured with the EuroQol 5-Dimension 5-Level (EQ-5D-5L) scale. Among the participants, 76.4% reported experiencing at least one symptom following COVID-19 infection. The most common symptoms were fatigue (42.1%), cognitive dysfunction (42.9%), and hair loss (27.9%). According to the DASS-21 results, the proportions of depression, anxiety, and stress were 28.7%, 26.4%, and 20.6%, respectively. The mean scores on the EQ-5D-5L and the EuroQol Visual Analog Scale were 0.94±0.11 and 84.20±13.11, respectively. Regarding QoL issues, the highest proportion of participants (32.7%) reported experiencing anxiety or depression, followed by pain or discomfort (25.4%). Multivariable logistic regression analysis revealed that factors associated with the presence of symptoms following COVID-19 infection included female (odds ratio [OR], 2.84; 95% confidence interval [CI], 1.65 to 4.91) and having QoL issues (OR, 3.25; 95% CI, 1.71 to 6.19). The study investigated the prevalence rates of various symptoms following COVID-19 infection. These findings underscore the need to prioritize comprehensive care for individuals recovering from COVID-19 and to implement strategies to mitigate the long-term impact of the disease on mental health and QoL.

Mental health and quality of life among Norwegian child welfare service workers

ABSTRACT Social workers in child welfare services play an important role in preventing crises and identifying the need for and implementing relevant measures among children and families of different ages and circumstances, often with little recognition. The main aim of this study was to examine mental health and overall- and professional quality of life of 978 Norwegian child welfare (CW) service workers. The design was cross-sectional and quantitative analyses showed that several demographic and job-related factors were associated with poorer mental health and quality of life. Approximately half of the respondents showed levels of psychological distress that warranted professional support and moderate or high levels of burnout and secondary stress (professional quality of life). Professional quality of life explained most of the variance in psychological distress and overall quality of life, respectively, after controlling for demographic and job-related variables. The findings of this study can lay the foundation for preventing mental health and quality of life issues among CW workers, as it indicates the focus areas for schools of social work in terms of the mental health of students and future CW workers.

(269) Analysis of Sexual Dysfunction Development Among Male and Female Living Kidney Donors

Abstract Introduction The need for kidney donations in patients with end-stage kidney disease has continued to exceed the number of deceased donor transplants, signifying the need for the continued growth, sustainability, and success of living kidney donation. Following donation, living kidney donors have excellent survival rates with mixed data regarding long-term outcomes of renal failure, hypertension, and proteinuria. However, no studies to our knowledge have looked at differences in the development of long-term sexual dysfunction following living kidney donation, a potentially serious quality of life issue. Objective To analyze differences in five-year sexual dysfunction outcomes among male and female living kidney donors using the US Collaborative Network within the TriNetX database, a federated network of EMR data from multiple healthcare organizations across the United States. Methods We used the TriNetX database to perform a propensity score-matched cohort study comparing five-year outcomes of sexual dysfunction development among adult (≥18) male living kidney donors (Male) and female living kidney donors (Female) from December 2013 to December 2022. Living kidney donors were defined as the presence of one diagnostic code and one procedural code. Patients were excluded from the study if they had any instance of diagnosed transplant status (by ICD-10) or transplantation procedures (by CPT) prior to the kidney donor status. Patients were matched on age, sex, race, ethnicity, marital status, diabetes mellitus, cardiovascular disease, personal history of genitourinary disease, presence of urogenital implants, mood disorders, BMI, tobacco and alcohol use, and problems related to lifestyle and socioeconomic circumstances. Primary outcomes analysis included 5-year hazard ratio of diagnosed decreased libido, sexual dysfunction (composite of new diagnosed male ED, vaginismus/dyspareunia, infertility, orgasmic disorders, arousal/desire disorders, or unspecified), UTI, and STDs. Secondary outcomes included sex counseling or problems in relationship with spouse or partner. Results There were 2,821 patients in each cohort after matching (Male, Female). Mean age of the cohort was 42.7 ± 12.7, 73.3% were White, and 10.8% were Hispanic/Latino (p >0.05). At 5-years, Kaplan-Meier analysis revealed that the Male donor cohort had a significantly higher hazard ratio (HR) than Female donors for sexual dysfunction (HR: 3.006, 95% Confidence Interval [CI]: 1.761,5.131). Between the cohorts, 39 (1%) Male patients developed ED and ~10 (<1%) Female patients developed vaginismus/dyspareunia within 5 years. No significant difference was found for the development of sexual arousal disorders/desire disorders (0.17% vs 0.06%, p = 0.052), orgasmic disorders (0.03% vs 0.03%, p = 0.99), decreased libido (0.48% vs 0.85%, p =0.94) and STD’s (0.72% vs 0.89%, p = 0.70). For secondary outcomes, no significant difference was found for the 5-year hazard of need for sex counseling or interpersonal relationship issues. Conclusions In our analysis of this large, real-world database, we found that male living kidney donors had higher rates of sexual dysfunction development 5-years post-living kidney donation. While living kidney donation is a safe, viable, and excellent alternative to deceased kidney donation, clinicians and living donors should both be aware about the potential association of developing sexual dysfunction post-donation. Disclosure No.

Patient reported outcome measures (PROMS) and patient reported experience measures (PREMS): Measuring outcomes in pelvic venous disorders

Pelvic venous disorders (PeVD) present with a range of heterogenous symptoms that arise from altered venous hemodynamics in the pelvis. Many of these symptoms lead to mental health and quality of life issues and are not limited to the pelvic region. The nutcracker phenomenon causing left renal vein compression and left ovarian venous hypertension as well as the compression of the left common iliac vein by the overlying right common iliac artery are often stated as the common underlying pathologies. As a result, there has been a sudden increase in the number of ovarian vein coil embolizations and iliac vein stents placed. In truth however, the altered venous hemodynamics in PeVD is more complex. There appears to be little correlation between the symptoms patients experience and the obvious image detected anatomical lesions being treated. In addition, these anatomical lesions are very commonly seen in asymptomatic and especially muti-parous women as well. To compare outcomes of these and other more extensive procedures being performed for these commonly seen anatomical changes in the pelvic veins, objective assessments of the outcomes as seen from the symptom relief they bring to patients treated is essential. Validated Patient-reported outcome measures (PROMS) can be an important tool to compare outcomes across interventions for PeVD. However, as the impact of similar symptoms on different patients’ quality of life (QoL) can vary, developing a validated PROM that can be used to compare procedural outcomes in PeVD is a challenge. On the other hand, complications and procedural success as reported by physician do not assess the effect on a patient’s QoL. This paper provides a narrative review of PROMs, patient reported experience measures (PREMs) and individualized-PROMs. It also suggests a process for how a validated PROM for comparing procedural outcomes in PeVD may be developed. This could provide a framework that incorporates the recently adopted Symptoms-Varices-Pathophysiology (SVP) classification of pelvic venous disorders into the PROM development process to ensure that a like-for-like comparison is made between procedures being performed on a very heterogenous, but long-suffering group of patients.

A hospital-based therapeutic food pantry study for people living with cancer in New Orleans

IntroductionFood pantries have the potential to improve health outcomes and quality of life for individuals living with cancer. Gender has been linked to certain cancer symptoms and dietary patterns. Nevertheless, the extent of research on the utilization of food pantries among this population, particularly with regard to gender differences, remains limited. The objective of this study is to explore the demographic characteristics and gender differences in quality of life, as well as the impact of cancer on the lives of individuals who utilize food pantry services.MethodsBetween February 26, 2019 and July 24, 2022, 400 people living with cancer were eligible to participate the University Medical Center New Orleans (UMC) food pantry. Participants were asked to provide demographic information and completed two health assessments related to the challenges in daily activities, nutrition, and mental health.ResultsThe study participants had a mean age of 54.1, and the majority of the participants were female. More than half of the participants did not have access to a vehicle or use public transportation to access grocery stores. People living with cancer reported several quality of life issues, with the most prevalent challenges being interference of cancer with work, lack of energy, difficulty affording food, pain, and sleep problems. Additionally, less than half of the patients reported consuming fruits and vegetables on a daily basis, and males were found to be less likely to consume them compared to females.DiscussionThe current study sheds light on the characteristics and quality of life of individuals who utilize UMC food pantry services, as well as the impact of cancer on their lives. The findings reveal a gender disparity in fruit and vegetable consumption, with male individuals living with cancer reporting lower levels of consumption.Implications for research and practiceIdentifying and addressing food insecurity among people living with cancer are necessary. Meanwhile, partnerships with community organizations may be valuable in finding ways to assist cancer survivors in returning to work. Future studies could also focus on encouraging fruit and vegetable consumption, particularly among male individuals living with cancer.

Constructing country-specific quality-of-life item banks for adults with amblyopia and strabismus in Australia and India

ABSTRACT Clinical relevance Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management. Background Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues. Methods Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared. Results The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems. Conclusion Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.

Patient-generated outcomes, questions and concerns: Quantitative and open text methods and relationships with palliative care referrals in advanced ovarian cancer.

259 Background: Remotely entered patient-reported outcomes, questions and concerns in an open-text format offer opportunity for communication to providers. However, is there a benefit beyond quantitative questionnaire items? The electronic Self-Report Assessment and Care (eSAC) was implemented for patients with advanced ovarian cancer undergoing treatment in ambulatory care at a Pacific Northwest tertiary care medical center and was shown to increase rates of palliative care referrals. The purpose of this study was to analyze open text entries along with quantitative symptom and quality of life reports exploring content consistency between the two reporting methods and palliative care (PC) referrals. Methods: Adult patients with advanced or recurrent ovarian cancer were invited to participate after an in-person clinic visit and complete a baseline report. Participants were prompted to complete a report 5 days prior to every clinic visit. Following completion of web-based symptom and quality of life issues (SQI) questionnaires, participants selected the two most bothersome SQI from a list of their moderate-to-severe level (MSL) responses. Just after, the participants saw, “If there is anything else you would like to discuss, or any questions you have for your care team, please type them in the box below.” Any MSL response to pain and/or quality of life items triggered a note to the provider on the summary report, “Based on this patient’s responses, a palliative care referral is recommended.” The one-page report, including all quantitative item responses and the text entries, was hand-delivered to the provider at each clinic visit. Text entries were analyzed for consistency with the quantitative bothersome SQI and frequencies of PC referrals were calculated. Results: A total of 134 enrolled and of the 120 participants submitting at least one report, 57 (48%) reported symptoms or quality of life issues at the MSL and made 108 text entries during the study. In 26 (24%) of the text entries, participants further discussed the two most bothersome MSL, 35 (32%) addressed one MSL and 47 (44%) entries addressed completely different issues. For those who provided no text entries and triggered the PC recommendation, only 5/21 (24%) received a referral. Those who created text entries and triggered were referred in 17/33 (52%) cases. Conclusions: The inconsistency and uniqueness between quantitative and text entry approaches to assessing SQI suggest that both methods are necessary for a comprehensive patient-generated report. Communication beyond quantitative scores may prompt the consideration of a PC referral.

Steatotic liver disease is the most important somatic determinant of quality of life in patients with obesity: A cross-sectional study.

Patients with metabolic dysfunction-associated steatotic liver disease (MASLD) are often comorbid and stigmatized. This can negatively affect quality of life (QOL). Other studies have primarily used the Chronic Liver Disease Questionnaire (CLDQ), which focuses on liver-related symptoms, to characterize QOL, but most MASLD patients have only mild liver disease, and CLDQ might overlook QOL issues pertaining to them. We aimed to determine the impact of metabolic dysfunction-associated steatohepatitis (MASH) on QOL in obese patients using a 136-item generic QOL questionnaire. We included participants with BMI ≥ 35 kg/m2 who all fully answered the sickness impact profile (SIP, range 0-100, normal = 3.4, 100 = worst) and had a liver biopsy to diagnose MASLD. Sociodemographics, comorbidity and biometric data were obtained from all participants. Of 176 (mean age 45.9 years, 70% female, 12.6 years of education), 132 had no-MASH and 44 MASH. On stepwise multivariable regression analysis, divorce (p = .011), unemployment (p < .003) and hepatic steatosis (p = .01) were associated with poor overall QOL. No other somatic comorbidity was associated. MASH patients more frequently than no-MASH reported physical discomfort (48% vs. 30%, p = .04), inability to do daily activities (29% vs. 54%, p = .006) and attention problems (32% vs. 57%, p = .003). MASLD severity was the only somatic determinant of QOL in patients with obesity in this cohort, and a large fraction reported debilitating symptoms. Patients and caregivers should consider the limitations this poses when planning interventions.

Validating the preoperative Japanese Core Outcome Measures Index for the Neck and comparing quality of life in patients with cervical spondylotic myelopathy and ossification of the posterior longitudinal ligament by the patient-reported outcome measures.

This cross-sectional study serves two main purposes. Firstly, it aims to validate the preoperative Japanese Core Outcome Measures Index for the Neck (COMI-Neck) in patients with cervical spondylotic myelopathy (CSM) and ossification of the posterior longitudinal ligament (OPLL). Secondly, it seeks to elucidate differences in preoperative quality of life (QOL) between these two cervical pathologies using patient-reported outcome measures (PROMs). A total of 103 preoperative patients (86 with CSM and 17 with OPLL) scheduled for cervical spine surgery were included in the study. Validated PROMs, including the Japanese COMI-Neck, Neck Disability Index (NDI), EuroQol-5 Dimension-3 level (EQ-5D-3L), and SF-12v2, were used to assess QOL. Baseline demographic and clinical data were collected, and statistical analyses were performed to compare the PROMs between CSM and OPLL groups. The Japanese COMI-Neck demonstrated good construct validity, with positive correlations with NDI and negative correlations with EQ-5D-3L and SF-12v2. Comparison of preoperative PROMs between CSM and OPLL groups revealed differences in age, body mass index, and EQ-5D-3L scores. The CSM group had higher NDI scores for concentration and lower EQ-5D-3L scores for self-care compared to the OPLL group. This study validated the preoperative Japanese COMI-Neck in CSM and OPLL patients and identified specific QOL issues associated with each condition. The findings highlight the importance of considering disease-specific QOL and tailoring treatment plans accordingly. Further research should include postoperative assessments and a more diverse population to enhance generalizability.

Vision Quality of Life with Time Survey: Normative Data and Repeatability.

To develop a novel Vision Quality of Life (QoL) survey that emphasizes the amount of time a visual activity can be performed before symptoms occur. The Vision Quality of Life with Time (VisQuaL-T) survey was developed with 10 daily activities and a list of common visual symptoms. Participants were recruited from a university campus. Participants were not excluded based on binocular impairments to obtain a normative dataset. Participants were instructed to denote when they first experience symptoms within certain time ranges. If participants did not engage in one of the 10 activities, they were instructed to denote "N/A". A composite score (range 0-3) was determined by only accounting for the questions that were answered. The normative data cohort had a sample size of 376 participants and the repeatability cohort had 54 participants. The normative, test, and retest datasets had a mean composite score of 2.47±0.54, 2.69±0.42, and 2.67±0.49 and 95% confidence interval of 2.38-2.71, 2.58-2.81, 2.54-2.80, respectively. There was good reliability and high correlation between the test and retest timepoints with an ICC of 0.825 and a Pearson correlation coefficient of 0.839 in the repeatability cohort. The normative data cohort showed good internal consistency with a Cronbach's alpha value of 0.803. Test and retest timepoints showed no statistical significance among the individual questions (p > 0.1). A lower bound score of 2.4 can potentially be used to differentiate visually normal and symptomatic participants. Statistical analysis showed the survey is repeatable and reliable. Using time as a metric for assessing symptomology could be a useful method for identifying patients with QoL issues and for assessing effectiveness of binocular vision, accommodative, and eye movement treatments.

P-455 Survey of multiple myeloma (MM) patients and healthcare professionals (HCPs) on the relevance of existing health quality-of-life (QoL) questionnaires (QoLQ) to real-world QoL issues of MM patients

P-455 Survey of multiple myeloma (MM) patients and healthcare professionals (HCPs) on the relevance of existing health quality-of-life (QoL) questionnaires (QoLQ) to real-world QoL issues of MM patients

Effect of 3 months structured aerobic exercises versus structured resistance exercises programme on blood sugar level in type 2 diabetes mellitus- A Randomized controlled trial

Background: There has been a burgeoning interest in quality of life issues in people with diabetes mellitus. The proposed study would be carried out to see which exercise programme would be more effective in glycemic control and improving quality of life after 3 months in patients suffering from type 2 diabetes mellitus. Method: Ethical clearance was obtained. Subjects fulfilling the criteria were included. Written consent was obtained and test protocol was explained to patients and data was collected. Result: The study shows that after 3 months of training the HbA1c %, fasting and post prandial bold sugar values of both the groups showed a very minimal difference between the two groups. Conclusion: The study shows that either of the exercises can reduce the glycaemic levels of the blood after 3 month thus making these exercises helpful in type 2 diabetes mellitus patients.  

Identifying at risk populations amongst breast cancer survivors and their common symptoms and concerns

PurposeThe survival rate amongst breast cancer survivors (BCS) have been increasing, with a 5-year survival rate of almost 90%. These women face many quality of life (QOL) issues either due to either cancer itself or the complex treatment regimen. Our retrospective analysis aims to identify at risk populations among the BCS and their most common concerns.MethodsThis is a single-institution, retrospective, descriptive analysis of patients who were seen at our Breast Cancer Survivorship Program from October 2016 to May 2021. Patients completed a comprehensive survey which assessed self-reported symptoms, their concerns and degree of worry and recovery to baseline. The descriptive analysis on the patient characteristics included age, cancer stage and treatment type. The bivariate analysis included the relationship between the patient characteristics and their outcomes. Analysis of group differences was completed with Chi-square test. When the expected frequencies were five or less, Fisher exact test was used. Logistic regression models were developed to identify significant predictors for outcomes.Results902 patients (age 26–94; median 64) were evaluated. Majority of women had stage 1 breast cancer. The most common self-reported concerns affecting the patients were fatigue (34%), insomnia (33%), hot flashes (26%), night sweats (23%), pain (22%), trouble concentrating (19%), and neuropathy (21%). Though 13% of BCS felt isolated at least 50% of their time, the majority of patients (91%) reported having a positive outlook and felt that they have a sense of purpose (89%). Younger patients were more likely to worry about their cancer more than 50% of the time (p < 0.0001). Patients that were less likely to return back to at least 50% of their pre-treatment baseline were younger (age ≤ 45) (p = 0.0280), had higher stage breast cancer (Stage 2–4) (p = 0.0061), and had chemotherapy either alone or as part of their multi-modality treatment (p < 0.0001).ConclusionAccording to our study, younger patients, those with higher stage breast cancer and survivors who had chemotherapy may experience significant QOL issues. Fortunately, majority of BCS report a positive and optimistic outlook post treatment. Identifying common concerns after treatments and vulnerable populations are especially important to deliver quality care and to optimize interventions.Implications for Cancer SurvivorsOur study identified the most common self-reported concerns affecting BCS. In addition, our results suggest that younger patients, patients with higher stage breast cancer and survivors who had chemotherapy were more likely to have QOL issues. Despite this, our study showed, the majority of BCS reported positive outlooks and emotions.

The International Network on Oesophageal Atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula.

Oesophageal atresia-tracheoesophageal fistula (EA-TEF) is a common congenital digestive disease. Patients with EA-TEF face gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life issues in childhood, adolescence and adulthood. Although consensus guidelines exist for the management of gastrointestinal, nutritional, surgical and respiratory problems in childhood, a systematic approach to the care of these patients in adolescence, during transition to adulthood and in adulthood is currently lacking. The Transition Working Group of the International Network on Oesophageal Atresia (INoEA) was charged with the task of developing uniform evidence-based guidelines for the management of complications through the transition from adolescence into adulthood. Forty-two questions addressing the diagnosis, treatment and prognosis of gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life complications that patients with EA-TEF face during adolescence and after the transition to adulthood were formulated. A systematic literature search was performed based on which recommendations were made. All recommendations were discussed and finalized during consensus meetings, and the group members voted on each recommendation. Expert opinion was used when no randomized controlled trials were available to support the recommendation. The list of the 42 statements, all based on expert opinion, was voted on and agreed upon.

Impact of brachial plexus birth injury on health-related quality of life in adulthood: a mixed methods survey study

Purpose To describe the scope and nature of health concerns, functional impairments, and quality of life issues among adults with brachial plexus birth injury (BPBI). Methods A mixed methods study was conducted by surveying two social media networks of adults with BPBI using a combination of closed-ended and open-ended questions regarding the role of BPBI on ones’ health, function, and quality of life. Closed-ended responses were compared across ages and genders. Open-ended responses were qualitatively analyzed to expand upon the close-ended responses. Results Surveys were completed by 183 respondents (83% female, age range 20–87 years). BPBI was reported to impact hand and arm use in 80% of participants (including affected and unaffected limbs and bimanual tasks), overall health in 60% (predominantly pain), activity participation in 79% (predominantly activities of daily living and leisure), life roles in 76% (predominantly occupation and parenting), and overall quality of life in 73% (predominantly self-esteem, relationships, and appearance). Significantly more females than males reported other medical conditions and an impact on hand and arm use and life roles. No other responses varied by age or gender. Conclusions BPBI affects many facets of health related quality of life in adulthood with variability among affected individuals.

EQIP Quality Assessment of Refractive Surgery Resources on YouTube

ABSTRACT Purpose To evaluate the utility of EQIP as a novel tool for determining the quality of patient information on YouTube regarding refractive eye surgery. Methods Three searches were conducted on YouTube using “PRK eye surgery”, “LASIK eye surgery”, and “SMILE eye surgery”. 110 relevant videos were evaluated using the Ensuring Quality Information for Patients (EQIP) criteria. Results The average EQIP score was 15.1 (moderate quality). On average, physician-authored videos scored significantly higher on questions 17 (p = .01), 18 (p = .001), 26 (p = .008), relating to author transparency and use of graphs/figures. Patient-authored videos scored significantly higher on questions 8 (p < .001), 9 (p < .001), 12 (p = .008), 16 (p = .02), and 21 (p = .0350). These questions addressed risks/benefits, quality of life and alert signs, date and video revisions, and personally addressing viewers. Conclusion EQIP was useful in identifying specific strengths and deficits in online refractive surgery patient education resources that were not evident from other screening tools. The quality of information on YouTube videos on refractive surgeries is average. Physician-authored videos could be improved by clarifying risks and quality of life issues. Quality evaluation of medical information is important for comprehensive online surgical education.

0716 Quality of Life in Idiopathic REM Sleep Behavior Disorder and Isolated REM Sleep Without Atonia

Abstract Introduction Idiopathic rapid eye movement (REM) sleep behavior disorder (iRBD) can affect quality of life (QOL) for both patient and bed partner; isolated REM sleep without atonia (iRSWA) has been less well-studied. We aimed to investigate whether QOL changes over time in those with either iRBD or iRSWA, as well as compare these changes to one another. Additionally, we attempted to demonstrate whether certain QOL changes were associated with phenoconversion to neurodegenerative illness. Methods We prospectively analyzed data from the “REM Sleep Behavior Disorder Associations with Parkinson’s Disease Study (RAPiDS)” cohort both at baseline and then at follow-up evaluations. We utilized the Neuro-QOL self-reported questionnaire to ascertain subjects’ level of QOL. Results There were 6 with iRSWA and 33 with iRBD, with an average age of 61.9 ± 13.0 years, with 13 women and 26 men. Significant QOL changes were found in both iRSWA and iRBD group. Among those who phenoconverted, fatigue and social functioning were the main QOL issues that that worsened over time. Conclusion This is the first time the Neuro-QOL has been studied in iRBD and iRSWA. QOL can be affected in both conditions; fatigue and social functioning seem to be of particular importance as they may be associated with phenoconversion. Support (if any) Grant from a private individual

Professional burnout, quality of life issues and psychological burden in anesthesiologists and intensive care specialists in contemporary conditions аfter COVID-19 pandemic: results of an internet-based survey

INTRODUCTION: Anesthesiologists and intensive care specialists are considered to be an extremely vulnerable group of medical specialists, more susceptible to professional stress in the context of the COVID-19 pandemic. OBJECTIVE: We aimed to study the severity of professional burnout syndrome (PB), quality of life (QoL) issues and psychological burben in anesthesiologists and intensive care specialists working in a multi-field hospital, as well as to determine the risk factors for PB in these specialists. MATERIALS AND METHODS: Physicians completed the online survey questionnaire including MBI, WHOQOL-BREF and HADS for assessment of PB, QoL and anxiety and depression, respectively, as well as the checklist with general questions related to COVID-19. Pairwise or multiple comparisons as well as correlation and regression analyses were performed within the statistical analysis. RESULTS: The online survey involved 101 physicians (mean age 38.3 ± 9.8 years, 54.5 % — females). During the pandemic, 68.3 % of specialists worked in the red zone. It was demonstrated that the PB syndrome or its signs were observed 2 years after the start of the pandemic in 75 % of specialists — in 27 % it was formed, and in 48 % its signs were revealed. Decreased levels of the main QoL domains, physical, psychological and social well-being, were observed in 1/3 of physicians. About one third of specialists had borderline or increased levels of anxiety/depression. Working in the red zone during pandemic and elevated levels of depression increase the probability of PB, and a high level of social well-being decreases it. CONCLUSIONS: For the prevention of the PB development of screening examinations are recommended on the regular basis to reveal those specialists who are at high risk of PB. The results obtained may be used to develop evidence-based practical recommendations for the prevention of PB syndrome and psychosocial disorders in anesthesiologists and intensive care specialists.