Poorer Quality Of Life Scores Research Articles

Assessment of Nonmotor Symptoms in Myasthenia Gravis: Fatigue and Disease Burden

ABSTRACT Background: Patients with myasthenia gravis (MG) experience fatigue throughout their lives, making it essential to distinguish fatigue from muscle weakness. We aimed to provide information about fatigue, its prevalence, its relation to personal and disease-specific factors, and the possible burden of the disease. Subjects and Methods: Fifty-three patients with MG who presented to our Neuromuscular Clinic between 2020 and 2022 were enrolled in the study. Patients were in pharmacologic remission or at the minimal manifestation stage according to the Myasthenia Gravis Foundation of America treatment status scale. A definitive diagnosis was based on a positive antibody test, a decrement response in repetitive nerve stimulation tests, and/or increased jitter or block on a single nerve fiber test in electromyography. To confirm a myasthenic exacerbation or crisis, the need for rescue treatment was assessed. Patients were divided into two groups based on whether they received rescue treatment. The Checklist for Individual Strength-Fatigue (CIS) questionnaire, the Quality of Life Questionnaire on Myasthenia Gravis (MG-QoL) assessment of fatigue, and the Quantitative Myasthenia Gravis Score for neurologic examinations were used. Results: The average fatigue score was 72, leading to 84% of patients being classified as fatigued, with a cutoff value of 40. The myasthenic crisis group exhibited worse CIS-total, CIS-physical fatigue, and CIS-subjective perception scores, as well as poorer quality of life scores, compared with the other patients. Opinions on the disease burden may vary because all the patients were in remission. Conclusion: Patients who experienced more crises throughout the course of the disease were in a more morbidity and had a greater disease burden compared with those who experienced fewer or no crises during remission periods. Fatigue represents a concept distinct from the muscle weakness detected during physical examinations; it significantly impacts patients’ daily lives and serves as a strong indicator of disease burden.

Baseline Characteristics of Frailty and Disease Stage in Older People Living With CKD

IntroductionThe GOAL trial, a cluster-randomised controlled trial, investigated the effect of comprehensive geriatric assessment (CGA) on frail older people with chronic kidney disease (CKD). This paper describes (1) participant baseline characteristics, and (2) their relationship with CKD stage and frailty severity. MethodsSixteen kidney outpatient clinics (clusters) were randomly allocated 1:1 to CGA or usual care. Enrolled frail older people with CKD (Frailty Index >0.25; aged ≥65 years or ≥55 if First Nations people) received the intervention allocated to their cluster. CKD was defined as moderate (stages 3/4) or severe (stage 5/5D), and frailty categorised as moderate (>0.25 to <0.36), severe (0.36 to <0.45) or very severe (≥0.45). Participant characteristics were analysed using descriptive statistics. Statistical methods appropriate for type of outcome were used to describe the association of frailty and CKD categories with participant characteristics. ResultsOver a 27-month period, 240 people were recruited (55.7% male, 82.9% white/European). Mean age was 76.9 (SD: 6.6) and median FI was 0.39 (IQR: 0.32 – 0.47). The median EQ-5D-5L quality of life index score was worse in those with very severe frailty (0.57, IQR: 0.28 – 0.83) compared to severe frailty (0.85, IQR: 0.67 – 0.92) and moderate frailty (0.90, IQR: 0.82 – 0.93) (overall P <0.001). Median EQ-5D-5L was also worse in those with severe CKD (0.79, IQR: 0.40 – 0.89), compared to moderate CKD (median 0.87, IQR: 0.73 – 0.92; P 0.001). ConclusionThis cohort demonstrated poorer quality of life scores in those with more severe frailty and more advanced CKD.

Impact of neurofibromatosis type 1 on quality of life using the Skindex-29 questionnaire quality of life in NF1.

Neurofibromatosis type 1 (NF1) is one of the most common RASopathies predisposing affected patients to melanic lesions and benign tumors. NF1 is associated with considerable esthetic and functional burden negatively affecting the patient's quality of life (QoL). This study aims to assess the clinical features of NF1 patients and evaluate their impact on QoL. We identified NF1 patients from a public health database of a region in Spain. All patients underwent clinical and ophthalmological evaluation for NF1 features. We measured QoL using the Spanish version of the Skindex-29. Forty patients fulfilled the NF1 National Institute of Health criteria when we recruited patients. The median age was 42.00 years (IQR 26.5 -53.75). The median total Skindex-29 score was 12.3 (IQR 5.9-22.4); (emotion: 15.0, IQR 5.0-37.5; symptoms 8.9, IQR 0.0-17.9 and functioning 8.3; IQR 0.5-18.3). Women and NF1 patients with lower educational levels were associated with poorer QoL scores. We identified itching and sleep troubles to influence NF1 patients' QoL negatively. NF1 considerably influences the psychological well-being of NF1 patients. We observed that female and low-educated patients scored higher on the emotional dimension of the Skindex-29 and could, therefore, be more at risk of depression. We also pointed out some "minor symptoms" that negatively impact NF1 patients' QoL such, as itching and sleep troubles which doctors could treat if sought by doctors.

Quality of life, stress, anxiety and depression and associated factors among people with type 2 diabetes mellitus in Western region Saudi Arabia.

The objective of this study is to evaluate the quality of life (QoL), depression, anxiety, and stress, along with associated factors among individuals with diabetes in Saudi Arabia. This survey was conducted at King Abdulaziz University (KAU), Jeddah, Kingdom of Saudi Arabia (KSA). The assessment of depression, anxiety, and stress related to Type 2 Diabetes Mellitus (T2DM) was conducted using the DASS-21 questionnaire, while diabetes-related QoL was evaluated using the revised version of the diabetes QoL questionnaire (RV-DQoL13). Data were analyzed using SPSS-26. A total of 251 subjects were included in the study (165 [65.7%] males and 86 [34.3%] females, mean age 50.1 ± 14.5 years). The individuals with DM had a mean value of QoL of 29.16 ± 9.23, with 46.9% having poor QoL. Furthermore, in dimensions of QoL, almost half of the individuals reported high worry about the disease (49.6%), followed by a high diabetes impact (46.6%) and low life satisfaction (42.9%). The prevalence of depression, anxiety, and stress was 49.4, 71.7, and 49.8%, respectively. A significant correlation was found between depression, anxiety, and stress and DASS-21 scores with QoL (p < 0.001). The regression analysis indicated an association of distinct factors with QoL like age above 41 years (p = 0.004), being married (p < 0.001), being divorced (p = 0.04), higher education (p = 0.007), regular medicine intake (p = 0.01), regular exercise (p = 0.03), lipid profile (p = 0.01), HbA1c (p < 0.001), and DASS-21 scores (p < 0.001). Poor QoL score (TQoL score > 27) was significantly associated with depression, anxiety, and stress (p < 0.001). The participants with higher monthly income, shorter disease duration, regular medicine use, and altered lipid profile, and older subjects had a lower chance of depression, anxiety, and stress. Approximately half of individuals with T2DM experienced poor QoL, while the prevalence rates for depression, anxiety, and stress were 49.4, 71.7, and 49.8%, respectively. Scores in the domains of impact, worry, and satisfaction were below optimal levels. Several factors were linked to QoL and depression, anxiety, and stress, and an association was observed between DASS-21 scores and QoL.

Factors affecting quality of life in rectal cancer survivors who have undergone laparoscopic surgery: patient-reported outcomes over 10 years at a single institution.

Colorectal cancer survivors have many problems affecting their quality of life (QOL). Traditional follow-up focuses on the detection of recurrence rather than QOL. Efforts are being made to assess patient-reported outcomes (PROMS) more formally. Such changes may enable patients to consider QOL factors when deciding on treatment. Patients who underwent laparoscopic surgery for rectal cancer between 2005 and 2015 at a single institution were identified and sent European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-CR29 QOL questionnaires. QOL and the impact of radiotherapy, chemotherapy and formation of end colostomy were assessed. Some 141 patients were identified: 12 died and 118 (83.7%) responded, of whom 101 completed the questionnaires and 17 declined to participate; 11 were lost to follow-up. Mean age was 67 years, median follow-up was 58 months. Median QOL score was 6 (maximum 7) and 4.5% of patients reported a poor QOL score (<4). Significant rectal/perianal pain, sexual dysfunction and urinary symptoms were reported in 3.6%, 10.9% and 2.7% of respondents, respectively. Significant differences between treatment groups were uncommon. All cohorts reported similar QOL, functional and symptom scores. These results compare favourably with the published data. Future studies may benefit from baseline assessment to better assess treatment impact, prescient in an increasingly elderly and comorbid population. This paper establishes that good PROMs are achievable with laparoscopic surgery for rectal cancer. It identifies limited differences in QOL between treatment modalities. Restoration of intestinal continuity and end colostomy result in similar QOL. This may address common concerns regarding stomata, sexual function and low anterior resection syndrome in this cohort.

Quality of Life Among People with Leprosy-Related Disability In Tamil Nadu: A Cross-Sectional Study

Background: Leprosy is one among the 20 conditions termed as Neglected Tropical Disease. Early diagnosis and treatment with multidrug therapy has made leprosy a curable disease these days. Even after all the improvements in managing the disease, the quality of life of affected individuals is still uncertain. Materials and methods: A cross-sectional study was conducted among people with leprosy related disability residing in Chengalpattu district using a semi-structured questionnaire to access the quality of life and its association with socio-demographic variables. Simple random sampling technique was used to select 223 study participants. Data were analysed using IBM SPSS v 21. Fishers exact test and chi-square test were employed and statistical significance was set at p &lt;0.05. Results: Out of the 223 participants, 40.4% had poor quality of life score. Class V socio-economic status, lesser duration of disability and positive surgery history for deformity had a significant association with overall quality of life. Conclusion: To conclude the findings of the current study, a huge prevalence of poor quality of life was noted that reflects the affected individual’s deprived physical and mental health status. Early prevention of disabilities by rightful intervention at the right time and appropriate self- care should be ensured to improve the quality of life.

Comprehensive Outcome Assessment and Quality of Life Following Epilepsy Surgery.

Seizure freedom without deficits is the primary goal for epilepsy surgery. However, patients with medically refractory epilepsy commonly suffer from many co-morbidities related to mood, cognition, and sleep as well as social problems and resultant stigma. While epilepsy surgery literature does describe quality of life (QOL) and neuropsychological outcomes, there is a paucity of information on various common non-seizure outcomes, especially pertaining to mood, sleep, cognition, and social aspects. The objective of this study was to evaluate the role of various non-seizure parameters on post-epilepsy surgery QOL. Consecutive adult patients operated for refractory epilepsy at least 1 year prior to initiation of this study were included and classified as seizure-free (group 1) or non-seizure-free (group 2). QOL was assessed using the QOLIE-31 instrument; patients with a T score less than 40 were categorized as "poor QOL." Non-seizure parameters assessed were cognition, mood disturbances, social improvement, social stigma, and sleep disturbances. Categorization into "good" and "poor" outcome subgroups on each item was carried out by dichotomization of scores. Thirty-seven patients (16 F) [mean age 23.5 ± 5.6 years] were evaluated; 26 were seizure-free (group 1). In this group, impaired memory, lower language scores, depression, not having been employed, not receiving education prior to surgery, and experiencing social stigma were factors significantly associated with poor QOL. In group 2, all patients had poor QOL scores. Non-seizure factors related to common epilepsy co-morbidities and social issues are highly prevalent among seizure-free patients reporting poor QOL after epilepsy surgery.

Identification of distinct symptom profiles in patients with gynecologic cancers using a pre-specified symptom cluster.

Pain, fatigue, sleep disturbance, and depression are four of the most common symptoms in patients with gynecologic cancer. The purposes were to identify subgroups of patients with distinct co-occurring pain, fatigue, sleep disturbance, and depression profiles (i.e., pre-specified symptom cluster) in a sample of patients with gynecologic cancer receiving chemotherapy and assess for differences in demographic and clinical characteristics, as well as the severity of other common symptoms and QOL outcomes among these subgroups. Patients completed symptom questionnaires prior to their second or third cycle of chemotherapy. Latent profile analysis was used to identify subgroups of patients using the pre-specified symptom cluster. Parametric and nonparametric tests were used to evaluate for differences between the subgroups. In the sample of 233 patients, two distinct latent classes were identified (i.e., low (64.8%) and high (35.2%)) indicating lower and higher levels of symptom burden. Patients in high class were younger, had child care responsibilities, were unemployed, and had a lower annual income. In addition, these women had a higher body mass index, a higher comorbidity burden, and a lower functional status. Patients in the high class reported higher levels of anxiety, as well as lower levels of energy and cognitive function and poorer quality of life scores. This study identified a number of modifiable and non-modifiable risk factors associated with membership in the high class. Clinicians can use this information to refer patients to dieticians and physical therapists for tailored interventions.

Impact of JME on quality of life: Does a well-controlled epilepsy also hamper the psychological wellbeing?

PurposeEpilepsy is a stigmatizing disorder and its diagnosis can have important psychosocial consequences on individuals, severely impacting their quality of life(QOL). There are numerous studies which have seen an adverse impact on the psychosocial aspects of life in patients with intractable epilepsy. The aim of this study was to assess the QOL in adult and adolescent patients with JME, which is largely a well-controlled form of epilepsy. MethodologyThis was a hospital based cross-sectional observational study comprising of 50 JME patients. QOLIE-31-P and QOLIE–AD-48 questionnaires were used to assess QOL in adults & adolescents(11–17 years) respectively. The Mini international neuropsychiatric interview-version 7.0.2 and Brief psychiatric rating scale were used for screening of underlying psychopathology and if, the screening tests were positive then they were further evaluated and classified using DSM V and ICD 10. ResultsThe mean QOLIE-31-P score was 64.65 ± 15.74. Majority of the adult patients had fair QOL (poor, fair and good QOL scores in 18 %, 54 % and 28 % respectively). Subscale scores in poor category were for the medication effects and pertaining to seizure worry.Among adolescent patients, the mean QOLIE 48 AD score was 69.15 ± 13.13. 50 % had fair QOL. Amongst those with poor QOL, majority of poor scores were for the attitude towards epilepsy. The QOL scores were significantly poorer in patients with uncontrolled seizures. 78 % of the patients had comorbid anxiety and depression, however syndromic psychiatric diagnosis was seen in 10.25 % and 2.56 % for anxiety and depression respectively. Presence of psychiatric symptoms did not influence QOL scores. ConclusionQOL, in well controlled JME, is fair in majority of patients. QOL might improve if seizure worry is addressed and patients are educated about medication effects at the time of initial diagnosis. Vast majority of patients may experience minor psychiatric issues, which do need addressal for formulating a holistic and individualized treatment plan.

Quality of life in patients treated for COVID-19-associated mucormycosis at a tertiary care hospital.

Coronavirus disease 2019 (COVID-19)-associated mucormycosis (CAM) has emerged as a formidable infection in patients with COVID-19. The aggressive management of CAM affects quality of life (QOL); thus, this study was designed to assess the QOL in patients with CAM at a tertiary healthcare institution. This cross-sectional study of 57 patients with CAM was conducted over 6 months using a semi-structured standard questionnaire (the abbreviated World Health Organization Quality of Life questionnaire [WHO-BREF]) and a self-rated improvement (SRI) scale ranging from 0 to 9. Cut-off values of ≤52 and <7 were considered to indicate poor QOL and poor improvement, respectively. The correlations of QOL and SRI scores were evaluated using Spearman rho values. In total, 27 patients (47.4%; 95% confidence interval [CI], 34.9%-60.1%) and 26 patients (45.6%; 95% CI, 33.4%-58.4%) had poor QOL and poor SRI scores, respectively. The overall median (interquartile range) QOL score was 52 (41-63). Headache (adjusted B, -12.3), localized facial puffiness (adjusted B , -16.4), facial discoloration (adjusted B, -23.4), loosening of teeth (adjusted B, -18.7), and facial palsy (adjusted B, -38.5) wer e significantly associated with the QOL score in patients with CAM. Approximately 1 in 2 patients with CAM had poor QOL and poor improvement. Various CAM symptoms were associated with QOL in these patients. Early recognition is the key to optimal treatment, improved outcomes, and improved QOL in patients with CAM.

Factors associated with reduced function and quality of life among adult people with HIV with depression and substance use in the Asia-Pacific region.

Depression and substance use (SU) disorders are prevalent among people with HIV (PWH) and impact health outcomes despite successful antiretroviral therapy (ART). We explored quality of life, functional ability and associated factors among PWH screened positive for depression and/or SU. This cross-sectional study recruited adult PWH during routine follow-up at five HIV clinical sites in the Asia-Pacific region. Participants were screened for depression using Patient Health Questionnaire-9 and SU using Alcohol, Smoking, and Substance Involvement Screening Test (ASSIST). Quality of life (QoL) was assessed with WHOQOL-HIV BREF and functional ability with World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Factors associated with mean QoL and disability scores were analysed using linear regression. Of 864 PWH enrolled, 753 screened positive for depression or SU. The median (interquartile range, IQR) age was 38 (31-47) years and 97% were on ART. Overall mean WHOQOL-HIV BREF and WHODAS scores indicated greater impairment with increasing depressive symptom severity and SU risk. In multivariate analysis, PWH reporting previous trauma/stress (difference = 2.7, 95% confidence interval [CI] 1.5-3.9, P < 0.001) and past mental health diagnosis (difference = 5.0, 95% CI 2.9-7.1, P < 0.001) were associated with greater disability and poorer QoL scores across multiple domains ( P < 0.01 for all). Higher CD4 T-cell counts was also associated with better QoL scores and functional ability. PWH with depression/SU experienced poorer QoL and function despite routine engagement in HIV care. Efforts to integrate mental health services and interventions addressing disability into HIV management should be prioritized in the region.

What Risk Factors Are Associated With Poorer Quality of Life in Patients With Head and Neck Cancer?

Head and neck cancer (HNCA), as well as the sequelae of its treatment, has a significant negative impact on the quality of life (QOL) for patients. We aim to identify patient and surgical factors negatively influencing QOL of patients with HNCA. A cross-sectional study was used to identify specific risk factors associated with a poorer QOL. The University of Michigan Head and Neck Quality of Life (HNQOL) instrument was used to assess QOL. Predictor variables included risk factors (smoking, alcohol, past medical history), demographic (sex, age, marital status), anatomical features (tumor location, tumor stage), perioperative adjuncts (utilization of a feeding tube, tracheostomy, neck dissection), and postoperative adjuncts (chemotherapy or radiation therapy utilization). The primary outcome variable was the HNQOL score. Descriptive statistics were completed for all the variables. Association between the predictor variables and HNQOL scores were examined using bivariate statistics, and statistical significance was set at P<.05. The study sample composed of 78 patients with HNCA who underwent surgery at Head and Neck Maxillofacial and Reconstructive Surgery Clinic at Ascension Macomb-Oakland from January 2017 to August 2018. Of the 78 patients meeting inclusion, 31 patients completed the HNQOL survey. The median HNCA QOL score was 18 with a maximum score of 80, representing a worse QOL. Radiation therapy (21 vs 5.5, P=.033), and perioperative feeding tube (31 vs 9, P=.012) had statistically significant negative impacts on QOL scores. Variables associated with poorer QOL scores in descending order: radiation therapy perioperative feeding tube utilization of chemotherapy (12.5 vs 9.0, P=.60), male gender (17 vs 9.5, P=.39), perioperative tracheostomy (26 vs 14.5 P=.26), tobacco use (19.5 vs 11.5, P=.81), single marital status (27 vs 16, P=.48), neck dissection (17.5 vs 15.5, P=.91), and alcohol use (18.5 vs 16.0, P=.65). Feeding tube and radiotherapy utilization had a statistically significant decrease of QOL scores among patients with HNCA. Additional risk factors associated with poorer QOL include chemotherapy, male sex, tracheostomy utilization, tobacco use, single or divorced marital status, neck dissection, and alcohol abuse.

Long-Term Survival, Prognostic Factors, and Quality of Life of Patients Undergoing Pelvic Exenteration for Cervical Cancer.

Simple SummaryCervical cancer is a malignancy that can easily be prevented through the simplest means of investigation. However, every two minutes a woman dies worldwide due to cervical cancer. Upon closer inspection, the reasons for death include low compliance with screening programs and HPV vaccination, inadequate information, media coverage, ethnicity, conviction, and misinformation. In Europe, Romania has a forefront position regarding the incidence of, and mortality caused, by this disease. Despite the many efforts carried out to counteract this situation, cervical cancer has become an ongoing health issue that still needs debating, particularly in the developing countries of Eastern Europe. Consequently, and for the first time in Romania, the authors of this study aim at revealing, through scientifically validated elements, the prognostic factors that influence the survival of patients undergoing pelvic exenteration for FIGO stage IVA, recurrent or persistent cervical cancer after previous conclusive treatment. The study also rigorously assesses the quality of life, using validated questionnaires, placing Romania alongside those countries that have highlighted these issues and sought to find answers.Background: Considerable efforts have been carried out over the past 30 years to support patients with advanced cervical cancer. Throughout this time, Eastern European countries have been left aside from the decision-making groups on this matter, hence the absence of similar studies in this geographical area. In these countries, the quality of life (QoL) of patients with cervical cancer might be considered a “caprice”, and the discomforts they encounter following pelvic exenteration for cervical cancer are often perceived as a “normal phenomenon”. Methods: This study examined forty-seven patients submitted to pelvic exenteration followed up for nine years after the surgical intervention. The first objective of this study is to identify the prognostic factors that influence the overall survival (OS) of patients undergoing pelvic exenteration for FIGO stage IVA, recurrent or persistent cervical cancer after previous conclusive treatments. The second objective is to assess the QoL of the surviving patients using the QLQ-C30 and QLQ-CX24 standardized questionnaires. Results: The mean age of the participants was 54 years (range 36–67). At the time of the study, there were 25 living patients (53.2%), the 3-year OS was 61%, and the 5-year OS was 48.7%. Cox regression analysis recognized parameter invasion, pelvic lymph node metastases, positive resection margins, early postoperative complications, and infralevatorian pelvic exenteration as negative prognostic factors influencing the OS (p < 0.05). Of the 25 survivors, 18 patients answered the QoL questionnaires. The cost of favorable survival has been translated into poor overall QoL, unsatisfactory functional, social, and symptom scores, a high prevalence of cervical cancer-specific symptoms such as lymphedema, peripheral neuropathy, severe menopausal symptoms, distorted body image, and lack of sexual desire. The lower scores are comparable to the only three studies available in the literature that assessed the QoL of patients undergoing pelvic exenteration precisely for cervical cancer. Conclusions: Despite its retrospective nature and some limitations, this paper, similar to other studies, shows a decent OS but with a marked adverse impact on QoL, suggesting the importance of adequate psycho-emotional and financial support for these patients following pelvic exenteration. This study also contributes to the current knowledge regarding advanced cervical cancer treatment, depicting survival, prognostic factors, and QoL of patients undergoing pelvic exenteration for cervical cancer in a reference center in Eastern Europe. Our study can provide a comparison for future prospective randomized trials needed to confirm these results.

IDF21-0436 Pharmacotherapy, adherence to medications and quality of life among diabetic patients with heart failure

Background: Patients with heart failure (HF) and diabetes mellitus (DM) have poorer clinical outcomes than patients with HF without DM. These patients may experience a striking deterioration, frequent hospitalizations, and increased all-cause mortality. Adherence to effective pharmacotherapy influences their quality of life (QOL). Aim: The objectives of this study were to evaluate the patterns of pharmacotherapy, assess factors affecting adherence to medication and quality of life (QOL) in diabetic patients with heart failure in an Indian tertiary care hospital setting. Method: We conducted a cross sectional study among patients with Type 2 Diabetes mellitus (T2 DM) and heart failure in an Indian tertiary care hospital from April 2018 to March 2020 after obtaining the informed consent (IEC approval No 82/2018). Data on sociodemographic characteristics, clinical features, pharmacotherapy, adherence to medication (Adherence and refills to medication scale) and quality of life (EQ 5D-3L) were collected prospectively by record review and patient interview. Data were analysed by independent samples t test, chi square test and multiple logistic regression analysis using SPSS 26.0. Results: We included 125 patients with Type 2 Diabetes mellitus (T2 DM) and heart failure. The mean age was 60.2 ±9.45 years with a male preponderance (74%). Smoking was noticed in 84% of patients and alcohol use in 57%. About 58% had other comorbidities, with hypertension in 58%. Mean HbA1C was 8.28±1.04. About 45% had a reduced ejection fraction (EF) and 55% had preserved EF. Polypharmacy was noted in 90%. The five most common drug classes used were diuretics (95%), antihypertensives (90%), antiplatelets (90%) insulin (78%), and statins (67%). Oral hypoglycaemic were used by 40%. Beta blockers were prescribed in 28% of patients. The most common adverse outcome was end stage renal disease (17%). Poor adherence to medications was noted in 54% of patients. Poor educational status <12th standard (38.8% vs 55.1%) and lower mean monthly income (15586.21±1874.79 vs 22044.78±1957.07) were noticed among those with overall poor adherence (p<0.05). On multivariate analysis, poor educational status (OR= 0.16, CI= 0.070-0.365, p<0.001) was noticed as an important predictor for poor adherence. Overall poor mean QOL score (0.67 ±0.22) was noticed in patients with type 2 DM and HF. Alcohol use (OR= 3.64, CI= 1.603-8.301, p= 0.002), chewable tobacco use (OR= 2.39, CI=1.030-5.549,P=0.04) and low overall health scale score (OR= 1.06, CI= 1.024-1.099, p<0.001)) were noticed as predictors of poor QOL. Discussion: Diabetic patients with congestive heart failure were found to have a male preponderance, multiple comorbidities, polypharmacy, poor adherence to medications, and an overall poor QOL score. Utilization of diuretics, antihypertensives, antiplatelets, insulin, and statins were noticed in most patients. Poor educational status and lower mean monthly income were associated with poor medication adherence. Alcohol and chewable tobacco usage and lower health scale scores were noticed as predictors poor QOL.

Study of Correlation of Severity and Quality of Life in Patients with Congenital Ichthyosis

Introduction: Congenital ichthyosis is a disorder of cornification of skin with various cutaneous symptoms. Quality of life is a subjective perception of patients regarding their disease status and treatment received. Dermatological disorders have poor quality of life associated with them as any other systemic disease. Objective : The present study was conducted to assess the quality of life among patients of congenital ichthyosis, so that suitable remedial measures may be devised based on the same. Materials and Methods: It was a hospital based cross-sectional study with total 120 patients enrolled for study duration of one year .Children’s Dermatology Quality Life Index (CDLQI) questionnaire was used to assess the quality of life among patients. Global disease severity scale and VAS scale for severity of ichthyosis was used along with recording of socio-demographic details. Results: With a response rate of 87%, the sample size comprised of 104 subjects, aged between 0-15 years. Females outnumbered the sample by more than 2/3rd. ‘Symptoms and feelings’ was the most affected domain in the CDLQI. Itching, female gender and presence of scales were significant predictors of poor quality of life scores. Conclusion: The present study shows the epidemiological correlation of patients with congenital ichthyosis and the predictors of poor quality of life score. Regular subjective assessment of quality of life among patients should be included in routine clinic visits, as counselling plays a very important role in these patients.

Psychometric Properties of the Thai Version of Supportive Care Needs Survey-Partners and Caregivers (T- SCNS-P&C) for Cholangiocarcinoma Caregivers.

Background:Unmet needs of cancer patients and caregivers are also closely linked with patients and their family well-being. Identifying and focusing on caregivers’ unmet need have been recommended to reduce their burden and improve their quality of life (QOL). This study aimed to evaluate the psychometric properties of the Thai version of Supportive Care Needs Survey for Partners and Caregivers (T-SCNS-P&C) among Cholangiocarcinoma (CCA) caregivers. Methods:The T-SCNS-P&C was developed using standardized translation methodology. A total of 231 CCA caregivers completed the T- SCNS-P&C. The internal consistency of the scale was examined with Cronbach’s alpha. Construct validity was analyzed using Pearson correlations coefficient with the physical effects, stage, anxiety and depression, age, and education level. To assess the factorial validity of the T-SCNS-P&C, confirmatory factor analysis (CFA) was performed. Results:The T- SCNS-P&C indicated good readability and high content validity for use as an assessment tool among Thai CCA caregivers. All Cronbach’s α coefficients were above the minimum acceptable criterion of ≥0.70. For construct validity, higher physical effect scores and higher anxiety and depression scores, as well as poorer QOL scores and younger caregivers, were significantly positively associated with higher levels of unmet needs. CFA indicated that the four factor structure of the T-SCNS-P&C was a good fit to the data.Conclusion: The T-SCNS-P&C demonstrated acceptable reliability and validity for assessing unmet needs among CCA caregivers in Thailand. Using this simple assessment to target the individual needs of these caregivers can help healthcare professionals providing effective personalized care.

POS-732 QUALITY OF LIFE AND ONE-YEAR SURVIVAL OF PATIENTS WITH KIDNEY FAILURE IN A RESOURCE LIMITED SETTING

In 2017, 1.2million people died due to kidney failure making it the 12th leading cause of death globally. This position has risen from 17th over the past three decades. The global burden of kidney failure is most felt in Resource Limited Settings (RLS) such as Uganda in Sub-Saharan Africa (SSA). In most of SSA, patients never receive renal replacement therapy due to limited accessibility or proximity to these services and of those initiated onto dialysis, 85% will discontinue it due to cost limitations to maintain healthcare expenditure thus leading to premature death. The objective of this study was to determine the survival and changes in Quality of Life (QOL) of kidney failure patients receiving care in a tertiary hospital in Uganda over a one-year period. Patients aged ≥18 years with kidney failure were recruited from the renal outpatients’ clinic, hemodialysis unit and inpatient ward of tertiary hospital in Uganda, and followed up for 12months. Survival rates were calculated using the Kaplan Meier method and factors associated with survival analysed with the log rank test. Quality of life was calculated using the Kidney Disease and Quality of Life-Short Form (KDQOL-SF™) version 1.3 questionnaire. Scores less than 50 were considered to be indicative of poor QOL. Data was analysed for 335 patients recruited into the study. 216 (64%) patients were on Conservative Management (CM) while 119 (34%) were on Hemodialysis (HD). Overall, one-year survival was 26.6%; 95%CI (21.8 – 31.2). There was no statistically significant difference in median survival of patients on CM (7.6 months) in comparison to those on HD (8 months) (p-value 0.3984). Male sex and distance from the hospital were significantly associated with shorter survival HR 1.38 (CI 1.04-1.83) while belonging to a protestant faith improved survival HR 0.64 (CI 0.48-0.88). Quality of life scores changed significantly for 13 out of 19 subdomains of the KDQOL-SF™. Subdomain scores that changed the most included- Social support; 75.6 ±29.2 at baseline to 27.7 ±19.4 at one year (p-value <0.001), and Effects of kidney disease 54± 20 to 70± 23 (p-value <0.001). All three composite summary scores; -mental health, physical health and kidney disease specific, showed statistically significant increases but remained less than 50 throughout the one-year follow up. Survival is dismal for patients with kidney failure with no survival or QOL advantage offered by HD in comparison to CM in this setting. Male sex and residence far from the hospital were associated with reduced survival and protestant faith improved survival despite poor QOL scores and a marked decline in social support over the one-year period. To improve patient outcomes in RLS, health systems need to increase accessibility and affordability of specialist renal services including; trained human resources and renal replacement therapy options, as well as integrate spiritual support, financial literacy and social support services into existing care practices.

Quality of life in children with nephrotic syndrome: a cross-sectional study using Hindi version of PedsQL 4.0 Generic Core Scales.

Worldwide, idiopathic nephrotic syndrome (INS) is the most common glomerular disorder in children. Limited studies are available on quality of life (QOL) in children with NS, especially from developing countries. The aim of the current study was to compare the QOL of children having INS with that of matched healthy controls and to evaluate the effects of sub-types on domain scores. This single-center, cross-sectional analytical study was conducted in children between 2 and 18years with primary INS, at a tertiary care center in India, from September 2018 to November 2018. QOL data were collected using PedsQL™4.0 Generic Core Scales "Hindi-for-India" version (child self-report and parent-report). A total of 102 cases with equal number of matched healthy controls were included. The mean total PedsQL scores were lower in NS children compared to healthy controls (p-0.0004). They had statistically lower scores in physical (p- < 0.0001), social (p-0.026), and school domains (p- < 0.0001); however, no such difference was noted in emotional functioning. School functioning was the most impacted domain overall, and also across all the clinical types. Worst scores were seen in children with steroid-resistant NS in all domains. Older age-at-enrolment, higher number of relapses, prevalent NS, steroid-resistant disease, calcineurin inhibitor (CNI) use, and higher number of immunosuppressant use were important predictors of poor total QOL scores. On multivariable regression, higher number of immunosuppressant use (p-0.015) and older age-at-enrolment (p-0.016) were main predictors of impaired total scores. Cases with edema and current/previous CNI use were more likely to have impaired emotional (p-0.028) and social (p-0.040) domain sub-scores, respectively. NS has a significant impact on the QOL of children in different domains of functioning, based on their as well as parents' perspective. EC/08/18/1414; Date: 30/08/2018.

Pattern of Cancers, Co-Existing Non Communicable Diseases, and Quality of Life among Elderly in a Tertiary Oncology Health-Care Facility in Southwestern Nigeria

Background: Cancer burden is worldwide in distribution, but there is an increasing proportion of the burden in low- and middle-income countries. Cancer has been shown to be responsible for poor health-related quality of life (QoL) in the elderly who are usually more affected. The aim of the study was to determine the pattern of cancers and QoL amongst elderly patients attending the Oncology Clinic in Lagos University Teaching Hospital (LUTH), Idi – Araba, Lagos, Nigeria. Methods: This cross-sectional study was carried out among 160 elderly patients in Oncology Clinic in LUTH using consecutive sampling method. Data were collected using a validated questionnaire that was interviewer administered. Data entry and analysis were done using Epi-info 7.1 software. Chi-squared test was used to determine the association between patterns of cancer and QoL. The level of significance was set at P &lt; 0.05. Results: The mean age of the respondents was 67.90 ± 19.3 years. About two-thirds (65.6%) were females, married (78.8%), and above one-half (52.5%) were employed. Majority of the respondents (92.5%) had caregivers who were their family members. The most common cancers seen were breast (44.4%), prostate (16.9%), cervical (9.4%), colorectal cancer (3.8%), and nasal carcinoma (3.8%) Two-third of the respondents (66.9%) had poor QoL scores. The mental component of QoL summary, (47.65 ± 17.1) was slightly higher than the physical component summary, (46.4 ± 14.6). No association was found between pattern of cancer and QoL (P &gt; 0.05). Conclusion: Most participants in this study had poor QoL. Improving the socioeconomic status of these patients as well as affordable access to health-care may impact positively on their QoL.

What Predictors Reduce Quality of Life in Head and Neck Cancer Patients?

IntroductionHead and neck cancers (HNCA) encompasses about 4% of all cancers in the U.S. However, the disease has a disproportionate impact on patients’ quality of life (QOL). Surgical and medical therapies can result in deformities of the head and neck, leading to severe impairment in speech, swallowing, and psychosocial problems. There is a primary focus on disease-specific treatment and survival, but QOL is a treatment outcome that has been increasingly recognized as an important outcome parameter in HNCA. ObjectivePostoperative QOL may be overlooked when managing head and neck cancer patients. The purpose of this study is to identify patient and surgical factors influencing QOL of head and neck cancer patients in hopes to improve patient outcomes. Materials and methodsThe authors implemented a retrospective cohort study design and enrolled a sample composed of head and neck cancer patients treated between 2017 and 2018. The predictor variables were grouped into the following categories: risk factors (smoking, alcohol, past medical history), demographic (sex, age, marital status), anatomic (tumor location, tumor stage), perioperative (utilization of a feeding tube, tracheostomy, neck dissection) and postoperative factors (chemotherapy or radiation therapy utilization). The primary outcome variable was the Head and Neck Quality of Life (HNQOL) score with higher scores correlated with poorer QOL. Descriptive statistics were completed for all the variables. Association between the predictor variables and HNQOL scores were examined using bivariate statistics and statistical significance was set at P < .05. ResultsThe study sample composed of 78 patients presenting or referred to the Center of Head and Neck Maxillofacial and Reconstructive Surgery Clinic at Ascension Macomb-Oakland from January 1, 2017, to August 31, 2018. Surgeries were completed at Ascension Macomb-Oakland and Ascension St. John Hospitals by 1 primary surgeon in the metro Detroit area. Of the 78 patients meeting inclusion, 31 patients completed the validated University of Michigan HNQOL instrument. The sample's mean age was 66 (±1.7) and 71% were male. The median HNCA QOL score was 18 with a maximum score of 80. Variables associated with poorer QOL scores were: radiation therapy (21 vs. 5.5, P = .033), perioperative feeding tube (31 vs. 9, P = .012), utilization of chemotherapy (12.5 vs 9.0, P = .60), male gender (17 vs 9.5, P = .39), perioperative tracheostomy (26 vs. 14.5, P = .26), current/prior tobacco use (19.5 vs. 11.5, P = .81), single marital status (27 vs. 16, P = .48), neck dissection (17.5 vs. 15.5, P = .91), and alcohol use (18.5 vs. 16.0, P = .65). ConclusionThe study results suggest that the presence of a feeding tube and utilization of radiotherapy most significantly decreased QOL among HNCA. Additional factors associated with poorer QOL were radiation therapy, utilization of a feeding tube, chemotherapy, male sex, tracheostomy utilization, tobacco use, single/divorced marital status, neck dissection, and alcohol abuse.