Evaluate Quality Of Life Research Articles

Mental health and quality of life in patients with craniofacial movement disorders: A cross-sectional study

BackgroundFacial appearance and expressions influence social interaction. Hemifacial spasm (HFS), blepharospasm (BPS), and blepharospasm-oromandibular dystonia (BOD) are common forms of craniofacial movement disorders. Few studies have focused on the mental burden and quality of life (QoL) in patients with craniofacial movement disorders. Therefore, this study investigated mental health and QoL in these patients.MethodsThis cross-sectional study included 90 patients with craniofacial movement disorders (HFS, BPS, and BOD; 30 patients per group) and 30 healthy individuals without craniofacial movement disorders (control group) recruited from October 2019 to November 2020. All participants underwent QoL and mental health evaluations for depression, anxiety, and stigma using the 36-item Short Form Health Survey (SF-36), Hamilton Anxiety Rating Scale (HAMA), Hamilton Rating Scale for Depression-24 (HAMD-24) and a questionnaire related to stigma.ResultsDepression was diagnosed in 37 (41.11%) patients, whereas 30 patients (33.33%) had anxiety. HAMA scores were significantly higher in the BPS and BOD groups than in the control group. Nineteen patients (21.11%) experienced stigma and SF-36 scores were lower in various dimensions in the movement disorders groups compared to healthy controls. The role-physical and social function scores were significantly lower in the movement disorders groups than in the control group all p < 0.05. The vitality scores of the BPS group and mental health scores of the BPS and BOD groups were significantly lower than those of the control group. Correlation analysis showed that the eight dimensions of SF-36 correlated with education level, disease duration, HAMD score, and HAMA score (all p < 0.05). Regression analysis demonstrated that the HAMD score correlated with general health, vitality, social function, role-emotional, and mental health (all p < 0.05). The HAMA score correlated with body pain after adjusting for education level and disease duration.ConclusionThis study highlights the significant frequency of mental symptoms, including depression, anxiety, and stigma, which lower QoL in patients with craniofacial movement disorders.

LGBTQI cancer patients' quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness.

BackgroundThere is growing acknowledgement of the psycho-social vulnerability of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. The majority of research to date has focused on cisgender adults with breast or prostate cancer.Study AimThis study examined psycho-social factors associated with distress and quality of life for LGBTQI cancer patients and survivors, across a range of sexualities and gender identities, intersex status, tumor types, ages and urban/rural/remote location using an intersectional theoretical framework.Method430 LGBTQI people with cancer completed an online survey, measuring distress, quality of life (QOL), and a range of psycho-social variables. Participants included 216 (50.2%) cisgender women, 145 (33.7%) cisgender men, and 63 (14.7%) transgender and gender diverse (TGD) people. Thirty-one (7.2%) participants reported intersex variation and 90 (20%) were adolescents or young adults (AYA), aged 15-39. The majority lived in urban areas (54.4%) and identified as lesbian, gay or bisexual (73.7%), with 10.9% identifying as bisexual, and 10.5% as queer, including reproductive (32.4%) and non-reproductive (67.6%) cancers.ResultsForty-one percent of participants reported high or very high distress levels, 3-6 times higher than previous non-LGBTQI cancer studies. Higher rates of distress and lower QOL were identified in TGD compared to cisgender people, AYAs compared to older people, those who identify as bisexual or queer, compared to those who identify as lesbian, gay or homosexual, and those who live in rural or regional areas, compared to urban areas. Elevated distress and lower QOL was associated with greater minority stress (discrimination in life and in cancer care, discomfort being LGBTQI, lower outness) and lower social support, in these subgroups. There were no differences between reproductive and non-reproductive cancers. For the whole sample, distress and poor QOL were associated with physical and sexual concerns, the impact of cancer on gender and LGBTQI identities, minority stress, and lack of social support.ConclusionLGBTQI people with cancer are at high risk of distress and impaired QOL. Research and oncology healthcare practice needs to recognize the diversity of LGBTQI communities, and the ways in which minority stress and lack of social support may affect wellbeing.

The Sommerlad-Furlow Modified Palatoplasty Technique: Postoperative Complications and Implicating Factors.

To explore the incidence of postoperative complications and investigate the impact of preselected factors on functional and quality of life outcomes following the Sommerlad-Furlow modified palatoplasty technique. Retrospective cohort. A total of 429 patients with cleft palate, who received Sommerlad-Furlow modified technique between 2011-2017 were enrolled. The postoperative complications including oronasal fistula (ONF), velopharyngeal insufficiency (VPI), and inadequate quality of life (QOL) were collected. Data of preselected factors including gender, age at palatoplasty, cleft type, cleft width, palatal width, pharyngeal cavity depth, and operation duration were also collected. Among 429 patients, 40.1% were males whereas 59.9% were females. The mean age at palatoplasty was 1.23 ± 0.69 (0.42-4) years, and the average cleft width was 10.15 ± 2.95 (4-27) mm. The cleft types had recorded rates of about 6.8%, 69.5%, 17.7%, and 6.1% of Veau I, II, III, and IV, respectively. The overall incidence rates of ONF, VPI, and inadequate QOL were 2.3%, 19.4%, and 31.3%, respectively. In both the univariate and multivariate analyses, the cleft type was significantly implicated in ONF formation (p= 0.023 and 0.032, respectively) whereas the velopharyngeal function was impacted by the palatoplasty age (p˂0.001). The receiver operating characteristic curve indicated that age of palatoplasty ≥1.3 years (area under the curve=0.611, p= 0.002) was the cutoff value for predicting the incidence of VPI. The Sommerlad-Furlow modified technique appears to have appropriate postoperative outcomes, even in the wide cleft palate. The older age at palatoplasty has a major impact on the overall postoperative outcomes. 4 Laryngoscope, 133:822-829, 2023.

Influence of Evidence-Based Nursing on Psychological Status, Neurological Function, and Life Quality of Patients with Acute Poststroke Depression.

Objective This research sets out to elucidate the influence of evidence-based nursing (EBN) on psychological status (PSY), neurological function, and quality of life (QoL) of patients with acute poststroke depression (PSD). Methods One hundred and fifty stroke patients who received treatment in the Characteristic Medical Center of PLA Rocket Force between December 2019 and December 2021 were enrolled, including 100 cases (Group A) treated with comprehensive EBN and 50 patients (Group B) with routine nursing. Anxiety and depression (Self-Rating Anxiety Scale [SAS] and Self-Rating Depression Scale [SDS] scores), neurological function (National Institutes of Health Stroke Scale [NIHSS] and Scandinavian Stroke Scale [SSS] scores), QoL (Generic Quality Of Life Inventory-74 [GQOLI-74] score), and complication rate of both groups were evaluated, as well as total effective rate and nursing satisfaction. Results Group A outperformed Group B with lower scores of NIHSS, SSS, SAS, and SDS and higher GOOLI-74 scores. Besides, lower complication rate and higher total effective rate and nursing satisfaction were determined in Group A. Conclusions EBN can better improve the PSY of patients with acute PSD, restore their neurological function, and effectively improve their QoL.

Cardiac resynchronization therapy adjustment during the cardiopulmonary testing: Study protocol

Background: Cardiac resynchronization therapy is known to promote symptom improvement, increased survival, and decreased hospitalizations for heart failure. However, one third of patients on cardiac resynchronization therapy may not achieve any clinical improvement. One of the factors for the lack of improvement is an inadequate adjustment of the cardiac device programming, because such adjustments are commonly made at rest. Cardiac resynchronization therapy optimization can be done by adjusting the cardiac resynchronizer during cardiopulmonary exercise testing, this allow the program to align with the functional class of the patient, thus maintaining atrioventricular synchronism and biventricular pacing according to the chronotropic response to effort. However, there is a lack of protocols that propose device adjustment through cardiopulmonary exercise testing and that evaluate the response to its readjustment. Objective: To develop a cardiac resynchronizer readjustment protocol using cardiopulmonary exercise testing. Methods: This was a randomized controlled clinical trial to evaluate the effectiveness of device readjustment during maximal exercise. The variables used to measure the degree of response to readjustment will be: Functional capacity by the six-minute walk test, life quality by means of the Minessota questionnaire and sleep quality by means of the pittsburg. Participants will be divided into two groups (control and intervention group), then, the six-minute walk test will be applied, followed by life quality and sleep evaluation. The cardiopulmonary test will be the last proposed activity and will not be performed on the same day as the other evaluations. After three months, they will be submitted again to the same testes mentioned previously. During the initial evaluation by cardiopulmonary testing, the components of the intervention group will undergo cardiac resynchronization readjustment by means of a protocol. Results: We hope that the intervention designed by the protocol can contribute to the improvement of functional capacity, quality of life and sleep.

Assessing quality of life in Behçet's disease: a systematic review.

The assessment of quality of life (QoL) in Behçet's disease (BD) patients has been a surrogate of disease outcomes, but a wider impact on the patient's lifestyle has not been considered. This systematic review aims to provide an overview of the existing tools specifically adopted to explore the QoL in BD patients. A systematic literature review was conducted using 2 electronic databases, according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A combination of BD and QoL-related search terms were used. All articles were screened by 3 independent reviewers for title, abstract and full text level. Studies investigating QoL in BD patients were included. 64 papers of 497 records were retained. Data about 7,449 patients with a BD diagnosis and QoL evaluation were collected. 47 different tools to evaluate QoL were detected. The mean number of tools adopted in each study was 2.14±1.34. General QoL and psychological and social impact were investigated in 68.75% and 54.69% respectively. The correlation with disease activity was investigated in 71.86%. The assessment of QoL in BD patients may provide a fundamental measurement for health to evaluate the outcome of interventions for BD patients. The adoption of a single validated QoL tool, developed including the BD patient's perspective, may provide an accurate and effective assessment, ensure the comparison within different cohorts, and set standardised values to define QoL level in BD patients.

Quality of life following medial patellofemoral ligament reconstruction combined with medial tibial tubercle transfer in patients with recurrent patellar dislocation: a retrospective comparative study

BackgroundBecause the patients undergoing medial patellofemoral ligament reconstruction (MPFLr) combined with medial tibial tubercle transfer (TTT) procedure are usually young and active, the quality of life (QoL) is also an important prognostic factor for patients with recurrent patellar dislocation. Assessing QoL can provide more useful and accurate evidence for the effects of this procedure. This study aimed to evaluate QoL following MPFLr combined with TTT, compared with isolated MPFLr (iMPFLr).MethodsFifty-one patients who underwent iMPFLr + TTT and 48 patients who underwent iMPFLr were included. Clinical evaluation included QoL (EQ-5D-5L and EQ-5D VAS), functional outcomes (Kujala, Lysholm and Tegner activity scores), physical examinations (patellar apprehension test and range of motion) and redislocation rates. Radiological evaluation included patellar tilt angle and bisect offset. These preoperative and postoperative results were compared between groups at baseline and the final follow-up. The paired and independent t tests were used for the data following a normal distribution. Otherwise, the Wilcoxon and Mann–Whitney U tests were used to analyze the differences. Categorical variables were compared by chi-square or Fisher’s exact test.ResultsAll of the QoL (EQ-5D-5L and EQ-5D VAS), clinical results and radiological outcomes significantly improved in both groups at the final follow-up, with no significant differences between groups. There was no significant difference in five dimensions of EQ-5D at the final follow-up, although percentages of people with problems of mobility and pain/discomfort were higher in the MPFLr + TTT group. Female patients had lower EQ-5D index and EQ-5D VAS compared with male patients in both groups at the final follow-up, but there was only a significant difference in the EQ-5D VAS.ConclusionsBoth MPFLr + TTT and iMPFLr groups obtained similar and satisfactory improvements in the QoL, clinical results and radiological outcomes, indicating that MPFLr combined with TTT is a safe and effective procedure, which can significantly improve the QoL for patients with recurrent patellar dislocation in cases of pathologically lateralized TT. However, female patients obtained lower QoL than males.

Quality-of-Life Evaluation of Patients with Unresectable Locally Advanced or Locally Recurrent Head and Neck Carcinoma Treated with Head and Neck Photoimmunotherapy.

Simple SummaryHead and neck photoimmunotherapy (HN-PIT) is a new treatment developed for local control of head and neck carcinoma. This study assessed the quality of life (QOL) of nine patients with unresectable locally advanced or locally recurrent head and neck carcinoma (LA/LR-HNC) treated with HN-PIT. QOL was compared before and 4 weeks after HN-PIT. There were no significant changes in all the QOL assessment parameters after treatment with HN-PIT. For patients with unresectable LA/LR-HNC, HN-PIT provided good local control without decreasing the QOL.Head and neck photoimmunotherapy (HN-PIT), a new treatment developed for local control of head and neck carcinoma, uses cetuximab sarotalocan sodium with a laser system to specifically destroy only tumor cells. No studies have examined the impact of HN-PIT on the quality of life (QOL) of patients with head and neck cancer. This study assessed the QOL of patients with unresectable locally advanced or locally recurrent head and neck carcinoma (LA/LR-HNC) treated with HN-PIT. Nine eligible patients with unresectable LA/LR-HNC who underwent HN-PIT at our institution between 20 January 2021 and 30 April 2022 were included in the study. They completed a QOL evaluation form. The primary endpoint was QOL assessment. The secondary endpoints were overall response rate, overall survival (OS), progression-free survival, and adverse events. QOL was compared before and 4 weeks after HN-PIT. There were no significant changes in all QOL assessment parameters after treatment with HN-PIT. The overall response rate was 89%, and safety was acceptable. For patients with unresectable LA/LR-HNC, HN-PIT provided good local control without decreasing the QOL. The addition of HN-PIT to conventional head and neck carcinoma treatment may lead to the prolongation of OS in head and neck carcinoma.

P01.15.A Longitudinal assessment of neurocognition and quality of life in low-grade glioma patients receiving first-line Temozolomide

Abstract Background While maximal safe resection is the first therapeutic option in patients with newly-diagnosed diffuse low-grade glioma (DLGG), the timing and choice of further treatments (chemotherapy, radiation therapy or combinations of both) remain controversial. Because the expected survival is long in these young patients, the oncological impact of treatments must be balanced with the possible side effects, in particular regarding neurocognitive functioning and quality of life (QoL). Temozolomide (TMZ), an alkylating agent, is widely used in this setting. Here we aimed at evaluating the feasibility of a longitudinal neurocognitive and QoL assessment in DLGG patients receiving TMZ. Material and Methods We conducted a prospective study including adult DLGG patients receiving TMZ as first-line treatment after surgical resection(s) or biopsy. Neurocognition and QoL were evaluated longitudinally until progression. The feasibility was evaluated in terms of participation and compliance of a complete neurocognitive and QoL assessment (defined as the completion of these assessments at baseline, 6 months and 12 months). Secondary objectives were the description of the proportion of patients with changes in neurocognitive or QoL scores on TMZ. Results Of 29 eligible patients, 26 accepted to enter the study (participation rate 86.7%): 57.7% men, median age 45y. Tumor type was distributed as follows: astrocytoma, IDH-mutant 13/26, astrocytoma, IDH wild-type 1/26 and oligodendroglioma, IDH mutant and 1p19q codeleted 12/26. The compliance rate was 95.6% (evaluable in 23 patients as 3 patients had tumor progression within the first 12 months of TMZ). After TMZ, 13.6% of patients experienced a decline of the MoCA score as compared to baseline (from normal to abnormal). Cognitive complaints according to the FACT-COG assessment were stable for 90.9%. The complete cognitive and QoL evaluations (baseline and after 12 months of TMZ) will be presented. Conclusion Our data shows that a longitudinal evaluation of cognition and QoL is feasible in low-grade glioma patients. It suggests that first-line TMZ does not negatively affect neurocognition and QoL. These results must be evaluated in the long-term setting (evaluations ongoing) and confirmed in a larger, multicenter cohort.

P07.08.B Surgical management of recurrent lower-grade gliomas: analysis of oncological and functional outcomes and associated factors

Abstract Background Presently, there are no clear evidence-based recommendations for the surgical management of progressive or recurrent lower-grade gliomas (LGGs). In our work, we evaluated the oncological (PFS, OS) and functional (neurological, neuropsychological, quality of life evaluation) outcomes of a series of LGGs treated in a 5-year period. The aim was to identify clinical, imaging, and molecular factors, associated with better outcomes, to be implemented in the treatment decision making process. Material and Methods In our retrospective analysis, 738 recurrent LGGs were included (follow-up 7.9 years; IQR:6-9); 550 were surgically treated, 495 with open resection (with brain mapping techniques), and 55 with tumor biopsy (with frameless stereotactic technique). Results Overall, 521 patients (70.6%) recurred. Of those treated with open resection 63.5% relapsed. Tumor progression was histologically confirmed in 72.5% of cases, no valuable tumor (effect of treatment) in 27.5% of cases (particularly in cases previously treated with RT and CHT), histo-molecular conversion (astrocytoma instead of oligodendroglioma diagnosis) in 7.5% of cases, malignant transformation in 38.7% of cases. Among the clinical (patient functional status, previous PFS, previous EOR, previous CHT and duration of CHT, previous RT), imaging (type of recurrence, i.e. typical versus atypical, speed of growth, contrast enhancement), and molecular (IDH, codeletion, ATRX, MGMT, tumor grade, CDNK status) factors analyzed, longest PFS of recurrent tumors was associated with patient functional status, previous PFS, previous EOR, speed of growth (&amp;gt;6 mm/year), atypical type of recurrence, tumor grade, presence of codeletion, and CDNK status. Best functional outcome associated with surgical resection, EOR, and tumor grade; worst functional outcome with RT and malignant transformation. Longest OS associated with previous EOR, surgical resection, tumor grade, presence of co-deletion. Malignant transformation was associated to previous EOR. Among patients submitted solely to tumor biopsy, changes in MGMT methylation status and in IDH status were observed in 65.3% and 5% of cases, respectively. Modification in IDH status was associated with atypical (distant) type of recurrence. New histo-molecular profile helped in the treatment decision making process. Conclusion Surgical resection of recurrent LGGs is associated with longer PFS and OS. Tumor biopsy should be considered, when surgery considered unfeasible, to tailor adjuvant treatment.

244.6: Postoperative Health Status and Quality of Life After Pure Laparoscopic Donor Hepatectomy for Living Donor Liver Transplantation

Background: Laparoscopic donor hepatectomy (LDH) for living donor liver transplantation has been performed in several specialized institutes. Surgical outcomes of LDH have shown comparable results to open donor hepatectomy (ODH), but the quality of life (QOL) after LDH is not known. This prospective questionnaire-based study was performed to assess health status and QOL of live liver donors before and after donor hepatectomy (DH). Material and Methods: From May 2017 to February 2020, 70 liver donors who underwent donor hepatectomy (DH) were enrolled, and questionnaire items such as Enhanced Recovery after Surgery (ERAS) mobility scale (EMS), Body Image Questionnaire (BIQ), and EQ-5D-3L were examined up to one year after DH to evaluate postoperative recovery, body image satisfaction, and health status, respectively. During the study period, 45 LDH donors and two ODH donors were finally fully evaluated (Figure 1). Results: Two patients in the OLH group were discharged on POD 8 and POD 10, respectively, with neither of the two achieving the level of being independently mobile (EMS ≥8). On the contrary, patients in the LDH group were considered independently mobile from POD 5 based on the mean EMS of 45 patients. The LDH group had a significantly higher mean EMS than the ODH group on POD 5 and 7 (P = 0.011, and P = 0.004, respectively, Figure 2). Body image score of the LDH group was significantly higher than that of the ODH group at one month after DH (17.8 vs. 15.0, P = 0.017). EQ-5D-3L index value and EQ-5D-3L VAS were not different from preoperative values at six months (P = 0.059) and one month (P = 0.217), respectively (Figure 3). Conclusions: Donors undergoing LDH showed faster (within a month) mobility recovery and body image satisfaction to the level of preoperative status than donors undergoing ODH. In the evaluation of QOL using EQ-5D, donors who underwent LDH recovered to preoperative health status within six months, in accordance with previous studies of donors with ODH. A multicentre prospective study will be needed to compare the LDH and ODH groups.

Quality of life and neurological disability in children and young people with ataxia telangiectasia.

To explore neurological factors affecting quality of life (QoL) in children and young people with ataxia-telangiectasia (A-T), from both child and parent perspective. 24 children/young people with A-T (mean age 11.2±3.5 years; 13 males) and 20 parents were recruited, and 58% were reassessed after an average interval of 3.4 years. Participants completed the PedsQL QoL assessment. Participants with A-T underwent structured neurological examination. QoL data from 20 healthy controls and their parents was used for comparison. Children/young people with A-T rated their QoL higher than parental ratings across time points, with no longitudinal change. Higher age of the child participant correlated with lower parental (r=-0.43, p=.008) but not child ratings of QoL (r=-0.16, p=.380). Child and parent QoL ratings from the A-T group were lower than respective ratings from controls (ηp2=0.44 and ηp2=0.75 respectively, both p<.0005, controlled for socioeconomic status). Parental, but not child, ratings of QoL was predicted by a regression model based on neurological scores (R2=0.44, p=<.001). Neurological disability does not determine child/young person QoL ratings in A-T. While certain aspects of neurological disability predict parent-proxy ratings, there is no decline in QoL over time. These results may reflect resilience in the face of a complex life-limiting disorder.

The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study.

ObjectiveThe appropriate management of patients with Dravet Syndrome (DS) is challenging, given the severity of symptoms and the burden of the disease for patients and caregivers. This study aimed to identify, through a qualitative methodology and a Delphi consensus-driven process, a set of recommendations for the management of DS to guide clinicians in the assessment of the clinical condition and quality of life (QoL) of DS patients, with a special focus on patient- and caregiver-reported outcomes (PROs).MethodsThis study was conducted in five phases, led by a multidisciplinary scientific committee (SC) including pediatric neurologists, epileptologists, a neuropsychologist, an epilepsy nurse, and members of DS patient advocates. In phases 1 and 2, a questionnaire related to patients' QoL was prepared and answered by caregivers and the SC. In phase 3, the SC generated, based on these answers and on a focus group discussion, a 70-item Delphi questionnaire, covering six topic categories on a nine-point Likert scale. In phase 4, 32 panelists, from different Spanish institutions and with a multidisciplinary background, answered the questionnaire. Consensus was obtained and defined as strong or moderate if ≥80% and 67–79% of panelists, respectively, rated the statement with ≥7. Phase 5 consisted of the preparation of the manuscript.ResultsThe panelists agreed on a total of 69 items (98.6%), 54 (77.14%), and 15 (21.43%) with strong and moderate consensus, respectively. The experts' recommendations included the need for frequent assessment of patient and caregivers QoL parameters. The experts agreed that QoL should be assessed through specific questionnaires covering different domains. Likewise, the results showed consensus regarding the regular evaluation of several clinical parameters related to neurodevelopment, attention, behavior, other comorbidities, and sudden unexpected death in epilepsy (SUDEP). A consensus was also reached on the instruments, specific parameters, and caregivers' education in the routine clinical management of patients with DS.ConclusionsThis consensus resulted in a set of recommendations for the assessment of clinical and QoL parameters, including PROs, related to the general evaluation of QoL, neurodevelopment, attention, behavior, other comorbidities affecting QoL, SUDEP, and QoL of caregivers/relatives and patients with DS.

Health-related quality of life and its association with outcomes in adults with congenital heart disease and heart failure: Insight from FRESH-ACHD registry

QoL is an important prognostic factor in Heart Failure (HF) of patients with acquired cardiac disease. The aim of this study was to determine the predictive value of Quality of Life (QoL) on outcomes in adults with congenital heart disease (ACHD) and HF. QoL of 196 ACHD patients with clinical HF (mean age: 44.3 ± 13.8 years; 51% male, 56% with complex CHD; 47% NYHA III/IV) included in the prospective multicentric registry FRESH-ACHD was assessed using SF-36 auto-questionnaire. The primary endpoint was defined by all-cause death, HF-related hospitalisation, heart transplantation or mechanical circulatory support. During a median follow-up of 12 months IQR [11.7–12], 28 (14%) patients reached the combined endpoint. Patients with low QoL experienced more frequently major adverse events ( Fig. 1 [ML1], Logrank P = 0.013). On univariate analysis, lower score at physical functioning (HR = 0.98; 95% CI 0.97–0.99, P = 0.008), role limitations related to physical health (HR = 0.98; 95% CI 0.97–0.99, P = 0.008) and general health dimensions of the SF-36 (HR = 0.97 95% CI 0.95–0.99, P = 0.002) were significantly predictive of cardiovascular events. Physical and general components of QoL were associated with worse outcomes in ACHD patients with HF, making QoL evaluation and rehabilitation programs essential to change this trajectory.

What does “staying well” after depression mean? Chronic low grade symptomatology after treatment for depression is common

BackgroundPersistent low grade depression symptoms are common and impairing in major depressive disorder (MDD) yet rarely reported in treatment follow-up studies (Judd et al., 1998a; Kennedy et al., 2004), suggesting that extant sustained remission rates may not reflect this important clinical feature. Furthermore, no long-term MDD treatment follow-up study has reported on quality of life ratings across functioning levels and years throughout the follow-up period, thus the severity, breadth, and persistence of functional impairment remain unclear. Accordingly, the current study evaluated the course of MDD with consideration of low grade depressive symptomatology and holistic features (e.g., quality of life). MethodsWe report long-term (9–14 years) follow-up data from individuals with MDD (N = 37) who underwent either Cognitive Therapy (CBT) or a course of selective serotonin reuptake inhibitor (SSRI) treatment. Patients provided retrospective reports of depression symptoms and quality of life in the years following treatment. ResultsChronic depression symptoms (most often mild in severity) and decreased quality of life in multiple domains are frequent and suggest poorer sustained remission rates than previously observed in the literature. LimitationsStudy limitations include small sample size recruited via convenience sampling methods. ConclusionsFindings support a conceptualization of depression recovery that entails persistent symptoms and vulnerabilities. Clinical recommendations are provided for discussing these features of depression recovery with patients.

Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey: 3. Drivers of quality of life in people with spinal cord injury

Study designCross-sectional population-based survey for the Australian cohort of the International Spinal Cord Injury (InSCI) Community Survey.ObjectivesTo differentiate subgroups of people with spinal cord injury (SCI) who self-report good and poor overall quality of life (QoL) using domains of the International Classification of Functioning (ICF), and to evaluate how these factors contribute to QoL when considered together, while controlling confounders.SettingAustralian survey data from four state-wide SCI services, one government insurance agency, and three not-for-profit consumer organisations.MethodsExplanatory factors for QoL were compared between participants reporting poor vs. good QoL. Path models estimated total, direct and mediated contributions from each explanatory factor to QoL ratings after accounting for confounders.ResultsMost participants (62%) reported good or very good QoL, 12% reported poor or very poor QoL. When explanatory factors were considered together, the strongest total effects on QoL involved social integration (+0.36 SDs), subjective social position (+0.29), secondary health condition burden (−0.28), activity/participation problem burden (−0.26), day-to-day assistance (−0.26), mental health (+0.18), pain (−0.16), self-efficacy (+0.15), vitality (+0.14) and environmental barriers (−0.11). Effects of social integration, mental health, vitality, self-efficacy, pain and activity/participation problems were partly or wholly direct.ConclusionOpportunities to improve QoL in people with SCI exist at every level of the health system. Virtually all aspects of the ICF framework make a substantive difference to QoL outcomes. Social and psychological factors and ability to complete desired activities have key direct effects and influence effects of secondary health condition burden and environmental barriers.

Quality of life beyond diagnosis in intellectual disability – Latent profiling

ObjectiveTo compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. MethodPrimary caregivers of 526 children with intellectual disability (age 5–18 years) and a diagnosis of cerebral palsy, autism spectrum disorder, Down syndrome, CDKL5 deficiency disorder or Rett syndrome completed the Quality of Life Inventory-Disability (QI-Disability) questionnaire. Latent profile analysis of the QI-Disability domain scores was conducted. ResultsThe mean (SD) total QOL score was 67.8 (13.4), ranging from 60.3 (14.6) for CDD to 77.5 (11.7) for Down syndrome. Three classes describing domain scores were identified: Class 1 was characterised by higher domain scores overall but poorer negative emotions scores; Class 2 by average to high scores for most domains but low independence scores; and Class 3 was characterised by low positive emotions, social interaction, and leisure and the outdoors scores, and extremely low independence scores. The majority of individuals with autism spectrum disorder and Down syndrome belonged to Class 1 and the majority with CDKL5 deficiency disorder belonged to Class 3. Those with better functional abilities (verbal communication and independent walking were predominately members of Class 1 and those with frequent seizures were more often members of Class 2 and 3. ConclusionThe profiles illustrated variation in QOL across a diverse group of children. QOL evaluations illustrate areas where interventions could improve QOL and provide advice to families as to where efforts may be best directed.

Intraoperative Radiofrequency Ablation for Contralateral Benign Nodules in Unilateral Thyroid Cancer Patients to Relieve Anxiety.

For unilateral papillary thyroid carcinoma (PTC) with contralateral benign nodules, optimal extent of surgery remains controversial. This retrospective cohort study was performed to evaluate the life quality of patients who underwent lobectomy alone and lobectomy with radiofrequency ablation (RFA). From October 2014 to October 2018, unilateral PTC patients with contralateral benign nodules reported by fine-needle aspiration cytology who encountered anxiety about contralateral nodule progression underwent lobectomy for PTC and intraoperative RFA for contralateral nodules. The patients who underwent thyroid lobectomy were matched for sex, age at time of surgery, number, size, and location of primary tumors and contralateral nodules to the patients who underwent lobectomy with intraoperative RFA. Three questionnaires were used to evaluate life quality in the two groups. The complications and rate of patients who were not required to receive thyroid-stimulating hormone suppression therapy were recorded. One hundred forty-eight patients with 194 contralateral nodules underwent RFA in the lobectomy plus RFA group, and age- and sex-matched patients underwent thyroid lobectomy alone. The mean volume reduction ratio was 67.7% at 12mo and 95.2% at 24mo. After a median follow-up of 4.2y, nine patients (6.1%) in the lobectomy plus RFA group and 17 (11.5%) in the thyroid lobectomy-alone group underwent completion thyroidectomy (P=0.100). Patients who underwent lobectomy plus RFA had a better quality of life in terms of anxiety, physiological health, social and family aspects, and psychological and sensory features that were measured cross-sectionally at 6mo using three instruments. Intraoperative RFA is effective in terms of volume reduction of contralateral nodules and improved quality of life for unilateral PTC patients with anxiety about disease progression.

Correlation between Glycation-Related Biomarkers and Quality of Life in the General Japanese Population: The Iwaki Cross-Sectional Research Study.

The correlation between diabetes-related biomarkers and quality of life (QOL) remains unclear. In this cross-sectional study, we investigated the correlation between diabetes-related biomarkers and QOL in a general Japanese population who underwent health checkups as a part of the Iwaki Health Promotion Project. Male and female participants aged ≥ 20 years from Iwaki District, Hirosaki City, Aomori Prefecture who participated in the 2019 medical evaluation were recruited. QOL was evaluated using the Short Form Health Survey 36 (SF-36). Fasting blood glucose, homeostatic model assessment-estimated insulin resistance (HOMA-IR), hemoglobin A1c (HbA1c), glycoalbumin, and plasma pentosidine were also evaluated as diabetes-related markers. Of the 1065 recruited participants, 1053 completed the clinical and QOL evaluations. Multivariate regression analysis revealed that upregulated diabetes-related markers levels were correlated with decreased SF-36 scores. Blood glucose, HOMA-IR, HbA1c, glycoalbumin, and plasma pentosidine levels were correlated with general health. Moreover, plasma pentosidine levels were correlated with role physical, social functioning, and role emotional in addition to general health. These results indicated that the levels of diabetes-related biomarkers, particularly the levels of plasma pentosidine, a glycation marker, were associated with QOL in our cohort.

Autologous stem cell transplantation improves cardiopulmonary exercise testing outcomes in systemic sclerosis patients.

Autologous haematopoietic stem cell transplantation (AHSCT) is a disease-modifying treatment for patients with severe SSc. Here, we aimed at assessing cardiopulmonary function outcomes of SSc patients after AHSCT. Twenty-seven SSc adult patients treated with AHSCT were included in this retrospective study. Most had the diffuse cutaneous subset (93%) and pulmonary involvement (85%). Before and 12 months after AHSCT, patients underwent cardiopulmonary exercise testing, transthoracic echocardiography, pulmonary function test with diffusing capacity for carbon monoxide (DLCO), 6-min walk test (6MWT) and quality of life evaluations. After AHSCT, the peak VO2 increased from 954 to 1029 ml/min (P = 0.02), the percentage of predicted peak VO2 increased from 48.9 to 53.5 m (P = 0.01), and the distance measured by the 6MWT increased from 445 to 502 m (P = 0.01), compared with baseline. Improvements in peak VO2 correlated positively with improvements in 6MWT distance, and negatively with a decrease in resting heart rate. At baseline, patients with DLCO >70% had higher peak VO2 values than those with DLCO <70% (P = 0.04), but after AHSCT all patients showed improved VO2 values, regardless of baseline DLCO levels. Increases in VO2 levels after AHSCT positively correlated with increases in the physical component scores of the Short Form-36 quality of life questionnaire (r = 0.70; P = 0.0003). AHSCT improves the aerobic capacity of SSc patients probably reflecting combined increments in lungs, skeletal muscle and cardiac function.