Significant Reduction In Quality Of Life Research Articles

Effect of Nivolumab on the Quality of Life in Recurrent/Metastatic Head and Neck Cancer.

Nivolumab is expected to further prolong survival and improve the quality of life (QOL) of patients with a poor prognosis of head and neck cancer. However, only a few studies have been conducted regarding the QOL of recurrent or metastatic head and neck cancer patients treated with nivolumab using real-world data. This study aimed to examine the effect of nivolumab on the QOL of these patients using real-world data. This study included patients with recurrent metastatic head and neck cancer who received nivolumab at the Department of Otolaryngology and Head and Neck Surgery, Tokyo Medical University Hospital from May 1, 2017, to December 31, 2021. Among them, 50 patients who self-assessed their QOL were included in this study. The primary endpoint was the QOL evaluation score, and secondary endpoints were overall survival (OS), progression-free survival (PFS), response rate, and immune-related adverse events. OS and PFS were evaluated using the Kaplan-Meier method. No significant reduction in QOL was observed before or after nivolumab administration. The median OS time was 20.1 months, and 1-year OS rate was 76.4%. The median PFS time was 4.2 months, and 1-year PFS rate was 31.0%. The comparison of patient QOL before and after nivolumab use suggested that patient QOL was not compromised. The results were not inferior to those of other studies in terms of treatment efficacy and safety.

Impact of subjective and objective language function and psychological distress on quality of life in glioma patients awaiting surgery

ABSTRACT Background Maintaining quality of life (QoL) and identifying contributing factors is an important aspect of treatment for glioma patients. Little is known about to what extent language function and psychological distress impact QoL before surgery. Aims The aim of the present study was to investigate the impact of subjective and objective language function, as well as psychological distress on domains of QoL before surgery. Methods and procedures Twenty-seven patients (52% female) with a suspected glioma, grade 1‒3 based on symptoms and MRI imaging diagnostics were assessed pre-surgery. Subjective language concerns, psychological distress and QoL were investigated with self-reported questionnaires. A Subjective language index was calculated, based on items addressing word-finding, expression of thoughts, reading and writing. Objective language function was assessed with tasks of naming (The Boston Naming Test), verbal comprehension (Vocabulary and Similarities), verbal fluency (Semantic and Phonemic fluency) and verbal short-term and working memory (Digit span forward and backward). The strength of associations was determined using Spearman’s rho correlations. Linear regression analyses were used to examine predictors for QoL. Outcomes and Results Clinically significant reductions in QoL were found in 48% of the sample. Subjective language concerns were highly common, with 85% reporting some degree of difficulty. Group means on objective language tests were within normative range on the included measures. The Subjective language index correlated significantly with several QoL domains, whereas objective performance mainly correlated with functional well-being. Psychological distress was a strong predictor for QoL. Conclusions The findings demonstrate that reductions in QoL may occur during the diagnostic phase, even before glioma treatment starts. Subjective language concerns and psychological distress contributed to all aspects of QoL and highlight the importance of acknowledging patient-reported information. The results suggest a comprehensive multi-modal assessment of glioma patients pre-surgery, to establish a base-line and facilitate patient-centered treatment planning.

Clinical spectrum and long-term outcomes of mpox: a cohort study spanning from acute infection to six-month follow-up

BackgroundCases of mpox have been reported worldwide since May 2022. Limited knowledge exists regarding the long-term course of this disease. To assess sequelae in terms of scarring and quality of life (QoL) in mpox patients 4–6 months after initial infection.MethodsProspective observational study on clinical characteristics and symptoms of patients with polymerase chain reaction (PCR)-confirmed mpox, including both outpatients and inpatients. Follow-up visits were conducted at 4–6 months, assessing the Patient and Observer Scar Assessment Scale (POSAS), the Dermatology Life Quality Index (DLQI) and sexual impairment, using a numeric rating scale (NRS) from 0 to 10.ResultsForty-three patients, age range 19–64 years, 41 men (all identifying as MSM) and 2 women, were included. Upon diagnosis, skin or mucosal lesions were present in 93.0% of cases, with 73.3% reporting pain (median intensity: 8, Q1-Q3: 6–10). Anal involvement resulted in a significantly higher frequency of pain than genital lesions (RR: 3.60, 95%-CI: 1.48–8.74). Inpatient treatment due to pain, superinfection, abscess or other indications was required in 20 patients (46.5%). After 4–6 months, most patients did not have significant limitations, scars or pain. However, compared to patients without such complications, patients with superinfection or abscess during the acute phase had significantly more extensive scar formation (median PSAS: 24.0 vs. 11.0, p = 0.039) and experienced a significantly greater impairment of their QoL (median DLQI: 2.0 vs. 0.0, p = 0.036) and sexuality (median NRS: 5.0 vs. 0.0, p = 0.017).ConclusionWe observed a wide range of clinical mpox manifestations, with some patients experiencing significant pain and requiring hospitalization. After 4–6 months, most patients recovered without significant sequelae, but those with abscesses or superinfections during the initial infection experienced a significant reduction in QoL and sexuality. Adequate treatment, including antiseptic and antibiotic therapy during the acute phase, may help prevent such complications, and hence, improve long-term outcomes.

SAT301 Patient-centered Outcomes Measures To Assess Quality Of Life In Adrenal Insufficiency Treatment

Abstract Disclosure: W.J. Hover: None. K.E. Lowe: None. M.E. Lowe: None. J.G. Kallet: None. M.F. Slovick: None. S.L. Majka: None. M.T. McDermott: None. E.A. Regan: None. Individuals with adrenal insufficiency (AI) have been shown to have reduced quality of life in spite of hormone replacement. Although late-stage insufficiency and adrenal crisis may show signs including hypotension and electrolyte abnormalities, patient-reported symptoms may predict outcomes in AI and can be a key factor in understanding poor quality of life in adrenal insufficiency. The SF-36, a generic quality of life (QoL) survey has been reported in adrenal insufficiency but may lack disease-specific domains to define QoL deficits in AI. An AI disease-specific QoL survey, the AddiQoL has also been validated. We evaluated the AddiQol and SF-36 for distinguishing the health status of AI patients in terms of diagnosis, medication use and risk of crisis using a patient registry. Methods: We identified 344 individuals from the MyAI patient registry who had provided responses to both the AddiQoL and SF-36. We compared the AddiQoL overall score with three domains of the SF-36: physical function, role physical, vitality, and the physical and mental component scores (PCS and MCS). Results: Respondents were from all 50 US states with 83% female and mean (SD) age of 50 (15) years. AI diagnosis was Primary 63%, Central 32% and congenital adrenal hyperplasia 5% based on self-report and confirmation with medical records. Both the SF-36 and AddiQoL identified reduced QoL in the AI participants and were significantly correlated: PCS to AddiQoL 0.73 and MCS to AddiQoL 0.63. Role Physical, Vitality and General Health were the most reduced domains with mean values of 38.4 (43.5), 35.6 (24.5) and 40.8 (24.7) respectively. Primary AI showed significantly better QoL than Central AI by both SF-36 and AddiQol [80.3(15.1) vs 69.9 (14.2), p<0.001]. Respondents who reported an adrenal crisis within the past year had significantly lower AddiQol [72.8(15.4) vs 82.3 (15.4), p<0.001] and SF-36 scores. Respondents who were currently treated with hydrocortisone (HC) had better QoL than those on Prednisone [HC 78.1 (15.2), Prednisone 74.1 (15.9), p=0.02 adjusted for diagnosis group]. Conclusions: In a geographically broad cohort of US AI patients, we confirm significant reductions in QoL in spite of treatment. Both the SF-36 and AddiQoL were able to distinguish differences in QoL by diagnosis, risk of adrenal crisis and medication. Further work to define specific patterns of high-risk symptoms may improve early diagnosis of impending crisis. Presentation: Saturday, June 17, 2023

Assessment of the quality of life and mental health of healthcare students during the COVID-19 pandemic.

to evaluate the quality of life (QOL) and the presence of symptoms related to depression, anxiety, and stress among students in the healthcare field, in comparison to the period before the COVID-19 pandemic. A comparative cross-sectional research was conducted at a Brazilian public university. QOL was assessed using the WHOQOL-bref scale, while symptoms of depression, anxiety, and stress were evaluated using the DASS-21 scale. Descriptive and inferential analyses were employed to compare the two time periods. A total of 355 students participated in this study. During the pandemic, there were significant increases in severe depression symptoms (15.1% versus 24.8%), moderate anxiety (18.3% versus 29.4%), and moderate stress (40.9% versus 53.8%) observed among the participants. Additionally, a significant reduction in QOL was noted, particularly in the domain of social relationships (65.2 versus 59.6, p-value 0.029). The study highlights a deterioration in both the quality of life and the mental health of healthcare students during the COVID-19 pandemic.

Post-COVID-19 condition is not only a question of persistent symptoms: structured screening including health-related quality of life reveals two separate clusters of post-COVID

PurposeSome patients experience long-term sequelae after infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, despite a present post-COVID condition, defined as “any symptom lasting longer than 12 weeks,” only a subset of patients search for medical help and therapy.MethodWe invited all adults with a positive real-time polymerase chain reaction (RT-PCR) for SARS-CoV-2 between March 2020 and September 2021 (n = 4091) in the city of Jena to answer a standardized questionnaire including demographic information, the course of the acute infection and current health status. K-means-clustering of quality of life (QoL) was used to explore post-COVID subgroups.ResultsA total of 909 participants at a median interval of 367 (IQR 291/403) days after acute infection were included in the analysis. Of those, 643 (70.7%) complained of having experienced persistent symptoms at the time of the survey. Cluster analysis based on QoL revealed two subgroups of people with persistent post-COVID symptoms. Whereas 189/643 participants (29.4%) showed markedly diminished QoL, normal QoL was detected in 454/643 individuals (70.6%).ConclusionDespite persistent symptoms being reported by nearly three quarters of participants, only one-third of these described a significant reduction in QoL (cluster 1), whereas the other two-thirds reported a near-normal QoL (cluster 2), thus indicating a differentiation between “post-COVID disease” and “post-COVID condition”. The prevalence of clinically relevant post-COVID disease was at least 20.7%. Health policies should focus on this subset.

Pilot Study of a Wearable Activity Monitor During Head and Neck Radiotherapy to Predict Clinical Outcomes.

Given the established associations between performance status and survival in a variety of cancers, there is significant interest in using a biometric wearable device (WD) to predict outcomes in the oncology population. In this pilot study, we investigated the ability of a WD to predict meaningful clinical end points in patients undergoing head and neck radiotherapy. Patients receiving head and neck definitive chemoradiotherapy or postoperative radiotherapy/chemoradiotherapy were enrolled in this pilot study, designed to show 90% compliance with using the device. Individuals were asked to wear the WD for 23 hours a day, and hospital admissions, pain medication usage, and FACT-G quality-of-life (QoL) score were prospectively recorded. Fifty-one patients were enrolled and started using the WD, but eight patients stopped wearing it, resulting in a compliance probability of only 84%. There were 15 hospital admissions, 13 of which were planned for feeding tube placement. There was no step count threshold that predicted the need for admission or more pain medications. However, among the 25 patients with a significant reduction in FACT-G score, the average reductions in daily steps during the week and weekend before the decline were 988 (P = .005) and 1,311 (P = .018), respectively, and the odds of a QoL reduction were more than 4-fold higher among patients experiencing a week-to-week reduction of at least 1,000 daily steps. There was no association between heart rate and any end point. Although not meeting the compliance goal, the majority of patients did use the WD. The WD signal could not identify patients requiring hospitalization or significantly more pain medication, but the finding of reduced step counts before a significant reduction in QoL is provocative.

Impaired Health of Children Treated for Hirschsprung’s Disease

Impaired Health of Children Treated for Hirschsprung’s Disease

‘Well-being paradox’ revisited: a cross-sectional study of quality of life in over 4000 adults with congenital heart disease

ObjectiveThe present cross-sectional study investigated quality of life (QOL) in a large cohort of German adults with congenital heart disease (ACHDs) in association with patient-related and clinical variables.DesignCross-sectional survey.ParticipantsBetween 2016...

Patient-reported Quality of Life following Stereotactic Body Radiation Therapy for Primary Kidney Cancer – Results from a Prospective Cohort Study

AimsWe report on the first prospective series of patient-reported quality of life (QoL) following stereotactic body radiation therapy (SBRT) for primary kidney cancer. Materials and methodsPatients were treated on a multi-institutional prospective cohort study with 30–42 Gy SBRT in three or five fractions. QoL assessments were carried out using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-15 Palliative (EORTC-QLQ-C15-PAL), the Functional Assessment of Cancer Therapy-Kidney Symptom Index-19 (FACT FKSI-19) and the EuroQol-5D-3L tools at baseline, 1 week, and 1, 3 and 6 months post-treatment. QoL over time was analysed using linear mixed modelling, pairwise and anchor-based analyses. ResultsTwenty-eight patients were included. No significant reduction in any QoL metric was observed on repeated measures. However, a trend to reduced EORTC global QoL and fatigue was observed at 1 week, with improvement over time in other symptom scores such as pain, appetite and nausea. On pairwise analysis, there were statistically significant reductions in global QoL at 1 week (with subsequent recovery) and dyspnoea at 6 months post-SBRT. Trends to improved pain, appetite and nausea were observed following SBRT. Less than half of patients reported stable or better EORTC global QoL at 1 week. For all other QoL and symptom scales, most patients had reported stable or better scores at all times, with a slight proportional improvement in emotional functioning, nausea, fatigue, pain and appetite, and a slight worsening of physical functioning and dyspnoea over time. ConclusionsSBRT results in well-preserved QoL in the weeks to months following treatment for primary kidney cancer.

Non-cardiac comorbidities in heart failure with reduced, mid-range and preserved ejection fraction

BackgroundComorbidities play a major role in heart failure. Whether prevalence and prognostic importance of comorbidities differ between heart failure with preserved ejection fraction (HFpEF), mid-range (HFmrEF) or reduced ejection fraction (HFrEF) is unknown. MethodsPatients from index (n = 2516) and validation cohort (n = 1738) of The BIOlogy Study to TAilored Treatment in Chronic Heart Failure (BIOSTAT-CHF) were pooled. Eight non-cardiac comorbidities were assessed; diabetes mellitus, thyroid dysfunction, obesity, anaemia, chronic kidney disease (CKD, estimated glomerular filtration rate < 60 mL/min/1.73 m2), COPD, stroke and peripheral arterial disease. Patients were classified based on ejection fraction. The association of each comorbidity with quality of life (QoL), all-cause mortality and hospitalisation was evaluated. ResultsPatients with complete comorbidity data were included (n = 3499). Most prevalent comorbidity was CKD (50%). All comorbidities showed the highest prevalence in HFpEF, except for stroke. Prevalences of HFmrEF were in between the other entities. COPD was the comorbidity associated with the greatest reduction in QoL. In HFrEF, almost all were associated with a significant reduction in QoL, while in HFpEF only CKD and obesity were associated with a reduction. Most comorbidities in HFrEF were associated with an increased mortality risk, while in HFpEF only CKD, anaemia and COPD were associated with higher mortality risks. ConclusionsThe highest prevalence of comorbidities was seen in patients with HFpEF. Overall, comorbidities were associated with a lower QoL, but this was more pronounced in patients with HFrEF. Most comorbidities were associated with higher mortality risks, although the associations with diabetes were only present in patients with HFrEF.

Patient-reported quality of life outcomes following treatment for oral cancer

Patient-reported quality of life (QoL) outcomes have the potential to assist clinicians in providing individually tailored treatment decisions. QoL assessments were collected prospectively for 168 consecutive patients treated for oral cancer between 1 January 2010 and 31 December 2014 using the University of Washington Quality of Life Questionnaire. Patients were followed up for 18 months post-treatment. Sub-group analyses were performed using paired t-tests and analysis of variance (ANOVA) to compare the effects of adjunctive chemoradiotherapy, type of bone resection, and methods of soft and hard tissue flap reconstruction. The greatest statistically significant reduction in QoL for all oral cavity sub-sites was found following the treatment of floor of mouth tumours (−18.9%, P=0.018). Laser excision for matched patient cohorts resulted in improved resultant QoL compared to other excision techniques (P=0.0002). No significant difference in QoL was found when radial forearm and anterolateral thigh flaps were matched, or when fibula and scapula flaps were matched. These findings support the use of laser excision and the avoidance of postoperative radiotherapy if curative intent and survival outcomes are maintained.

Depression during the menopause transition: impact on quality of life, social adjustment, and disability.

The impact of depression on quality of life (QOL) and social support has neither been well characterized in clinical samples of women with perimenopausal depression (PMD) nor have the relative contributions of depression and other menopausal symptoms (e.g., hot flushes) to declining QOL been clarified. In this study, we compared QOL measures, social support, and functional disability in PMD and non-depressed perimenopausal women. We evaluated women aged 40-60years who presented with menstrual cycle irregularity, elevated plasma FSH levels, and met criteria for perimenopause. A structured clinical interview was administered to determine the presence or absence of major and minor depression. Outcome measures included the Quality of Life Enjoyment Scale Questionnaire, the Sheehan Disability Scale, the Global Assessment of Functioning, the Social Adjustment Scale, and the Duke Social Support Index. Kruskal-Wallis tests and ANOVAs were used to compare outcome measures. Ninety women with PMD and 51 control women participated in this study. Women with PMD reported significantly decreased QOL, social support, and adjustment and increased disability compared with non-depressed perimenopausal women. Neither perimenopausal reproductive status alone nor the presence of hot flushes had a significant negative impact on QOL measures. PMD is accompanied by significant reductions in QOL, social support, and disability similar to depression in women at other stages of life. PMD may also contribute to decreased QOL in community- or clinic-based samples of perimenopausal women. It remains unclear whether the clinical characteristics we identified reflect pre-existing risk factors for depression during the perimenopause or the effects of a current depression. Future clinical and treatment studies in perimenopausal women should distinguish depressed women when outcome measures include QOL.

Factors Impacting Quality of Life in Thalassemia Patients; Results from the Intercontinenthal Collaborative Study

▪Thalassemia is one of the most common causes of inherited anemia worldwide. While significant advances has been made in clinical management of thalassemia patients over the past few decades, our knowledge on the factors affecting the quality of life of thalassemia patients is limited.The "IntercontinThal Study" is a collaborative effort to study the quality of life (QoL) and quality of care of thalassemia patients in populations across diverse social and health care systems. Data presented here are from the three participating centers in Canada, Lebanon and Iran. We have gathered study data through: a) QoL questionnaire SF-36 completed by patients, b) a specifically designed and validated questionnaire completed by patients which addressed patient's social status (marriage/relationship status, education, employment status, and access to social support and health care), and c) review of the patients' charts using a data collection form. This form included: patients' demographics, specifics of transfusion therapy and iron chelation, thalassemia-related and other clinical complications (endocrinopathies, bone disease, cardiac disease, hemolysis-related complications, etc.), tissue iron content (liver and cardiac) and/or serum ferritin within the past three years, and splenectomy status. All study questionnaires were translated into Persian (for Iranian patients) and Arabic (for Lebanese patients). Due to the variety of the clinical complications, all clinical complications were aggregated together for statistical analysis. We used univariate and multivariate regression analysis to study the association of predictors and patients' QoL Mental Component Summary (MCS) Score.Ninety seven patients [46 female, 59 transfusion-dependent beta-thalassemia (TDT) and 38 non-transfusion-dependent beta-thalassemia (NTDT)] were included in the analysis. All patients were older than 18 years of age (Mean 32 years, SD: 7 years). In univariate analysis age, access to social support and health care, marriage status, liver iron concentration and ferritin (strongly correlated with each other), and disease-related complications were found to be predictor of QoL MCS scores. In NTDT patients, splenectomy and lower baseline hemoglobin were also significantly associated with reduced QoL. In multivariate analysis, ferritin and age (and clinical complications in TDT patients) were found to independently be associated with reduced QoL. LIC was not found to be an independent factor likely due to the fewer number of patients who had recent LIC assessments. Of interest, patients with NTDT reported better QoL at younger age compared to TDT patients but there was a trend toward worse QoL at older age.Our results provide a better understanding of the factors that affect the QoL of thalassemia patients and highlights the importance of management of body iron in both TDT and specially in NTDT patients. In addition, it confirms the notion that while NTDT patients may not require regular transfusions based on conventional criteria, they may experience significant reduction in QoL especially at older ages. Further efforts to address the health and QoL of NTDT patients are required to improve the outcomes of this often neglected condition. (Funded by a research grant from the Thalassemia Foundation of Canada) DisclosuresTaher:Celgene: Research Funding; Novartis: Honoraria, Research Funding.

Haemostatic disorders in reproductive age women with menorrhagia and effects on quality of life

The aim of this study was to determine the frequency of haemostatic abnormalities in women with menorrhagia and to evaluate their effect on quality of life (QoL). The study population was composed of patients with menorrhagia seen in the outpatient clinic, having a score of >185 with a pictorial blood assessment chart. Structured questionnaires were used in the assessment of demographic characteristics and QoL, and patients were tested for bleeding disorders. Ninety women were recruited for the study. Bleeding disorders were detected in 40% of them: 11.1% had von Willebrand disease, 2.2% had low von Willebrand factor and 26.7% had platelet function disorders (PFD). In 22 (91.6%) cases with PFD the, defect was non-specific and impaired aggregation response to ristocetine (37.5%) was the most commonly detected problem. Bleeding disorders were not associated with any significant reduction in QoL (p > .05). Hereditary bleeding disorders may be the cause of unexplained menorrhagia even in the middle-aged women, but they had no prominent effect on QoL.

Long-term quality of life and functionality after ventral hernia mesh repair.

The absence of recurrence and pain are important for good quality of life (QoL) after ventral hernia mesh repair. We wanted to study long-term outcome after laparoscopic (LVHR) and open ventral hernia mesh repair (OVHR) using validated scales to measure QoL and functional outcome. We conducted a single-center follow-up study of 194 consecutive patients after LVHR and OVHR between March 2000 and June 2010. Of these, 27 patients (13.9%) died and 14 (7.2%) failed to attend their follow-up appointment. Of 153 (78.9%) patients who attended, 81 (52.9%) patients had LVHR and 72 (47.1%) patients had OVHR, including 11 conversions (surgery group). One hundred and twelve patients with non-recurrent ventral hernia were also enrolled consecutively as controls (non-surgery group). Quality of life was measured by the SF-36 short form questionnaire and functional outcome by the Activities Assessment Scale (AAS) with the revised Life Orientation Test to measure the influence of dispositional optimism on pain and functionality. Assessment of pain was done using a 100-mm visual analogue scale ruler anchored by word descriptors. Median time from hernia mesh repair to follow-up was 48 and 52months after LVHR and OVHR, respectively. There were no long-term differences between LVHR and OVHR measured by SF-36 and AAS. Physical dimensions in SF-36: physical function, restrictions in physical function and bodily pain, were significantly better in the surgery group compared to the non-surgery group, but only for incisional hernia. Recurrence was associated with a significant reduction in QoL in all dimensions of SF-36 in both hernia repair cohorts. Chronic pain and impairment were closely related. Optimistic patients had less impairment than pessimistic patients. LVHR and OVHR reduce chronic pain and physical impairment and improve long-term QoL. Hernia recurrence and persistent pain reduce the beneficial effect of hernia surgery. Dispositional optimism can modulate QoL reporting and improve functionality.

Quality of Life of Institutionalized Elderly People in Nursing Homes: a Quantitative Analysis

Nursing homes have the characteristic of being “complete institutions” or “enclosed microcosms” and the quality of life (QoL) in late adulthood is generally perceived as a multidimensional construct. Over recent years, media reports have focused on the deficiencies in nursing home residences, and a subsequent increase in the demand for instruments capable of measuring this construct has arisen. Objective: To compare the quantitative functional mobility, level of independence, depressive symptoms and QoL of nursing home residents compared with home care recipients. Methods: have analyzed the quality of life and physical and psychological disorders 400 people over 60 years old, admitted to nursing homes or living with their families through the implementation of a questionnaire covering three different indices (Barthel Index, Yesavage and WHOQOL-OLD) to assess the degree of dependence of people. Results: has resulted in a significant reduction in quality of life of older people living in nursing homes (p&lt;0.001) compared to older usually live with their families. Our results show that the degree of physical and / or psychological dependence on our largest is the determinant for entry into a nursing home in our community (p&gt;0.001) factor. Conclusions: the current model residences require a change that allows responding to the real needs of our elderly institutionalized.

Predictors of quality of life in 102 patients with treated Cushing's disease.

To identify predictors for quality of life (QoL) in treated Cushing's disease (CD) and quantify patients' assessment of their disease status. Significant reductions in QoL exist in CD patients despite treatment. Identifying predictors of QoL is paramount to the long-term management of these patents. A cross-sectional study was conducted of patients with treated CD. Patients completed a medical history questionnaire and three validated quality of life assessments: Cushing's QoL Questionnaire (CushingQoL), Hospital Anxiety and Depression Scale (HADS) and Nottingham Health Profile (NHP). 102 patients (75·7% female, mean time since surgery 7·4 years) with treated CD were included. Patients were categorized by biochemical and self-identified disease status. Mean CushingQoL, anxiety and depression scores were compared by unpaired t-tests. Multiple linear regressions were performed on the whole cohort to assess for predictors of impaired QoL. Ninety-two per cent of the cohort met criteria for biochemical remission, but only 80·4% felt they had achieved remission. Among those with biochemical remission, those who also self-identified as being in remission had higher CushingQoL scores than those who self-identified as having persistent disease (P = 0·042). Anxiety (P = 0·032) and depression (P = 0·018) scores were lower, and CushingQoL scores were higher (P = 0·05) in patients who self-identified as being in remission compared to persistence. Recovery time, BMI, gender and age were also predictors for QoL. Our study identifies the discordance that can exist between biochemical and self-assessed disease status and demonstrates its impact on QoL in patients with CD. These findings highlight the importance of incorporating patients' disease perceptions in their management.

The incidence and implications of cerebral palsy following potentially avoidable obstetric complications: a preliminary burden of disease study

To determine the extent of cerebral palsy attributable to adverse obstetric events, and estimate the lifetime mortality and morbidity expectations of these individuals relative to age-matched members of the UK general population. Simulation model. All projected live births during 2014. Using published data regarding the incidence and aetiology of cerebral palsy, we simulated the outcomes of a hypothetical cohort of UK live births. Survival and quality of life (QoL) for those with cerebral palsy were compared with age-matched individuals representative of the UK general population, in order to estimate the number of quality-adjusted life years (QALYs) lost following asphyxia-related cerebral palsy. Incidence of asphyxia-related cerebral palsy, QALYS, QoL, and survival. A total of 207 (95%CI169-245) cases of asphyxia-related cerebral palsy were projected amongst UK children born during the year 2014, with approximately 15.2QALYs lost per case. If these results held true in a real birth cohort, 3142 (95%CI2321-3963) QALYs would be lost as a consequence of asphyxia-related cerebral palsy, a loss valued by the UK National Health Service at £62.9m (95%CI £46.4-79.3m). Cerebral palsy following intrapartum asphyxiation leads to significant reductions in QoL and survival; however, this may often be prevented. For those with GMFCS1 and GMFCS2 cerebral palsy (Gross Motor Function Classification System), lifetime QALYs accrued largely resemble those experienced by the UK general population, whereas for GMFCS3 and GMFCS4 QALYs are reduced considerably, and are negative in the case of GMFCS5.

Lebensqualität von älteren Menschen mit leichten kognitiven Störungen

Studies on quality of life in people with mild cognitive disorders are rare and show inconsistent results. A representative population survey of 997 older individuals (60 - 69 y., 70 - 79 y., 80+ y.) was conducted. Study participants were interviewed face-to-face. Core instrument for the assessment of cognitive performance was the DemTect. Quality of life (QOL) was measured with the WHOQOL-BREF in four domains (physical, psychological, social, and environment domains) and the add-on module WHOQOL-OLD, which contains 24 items in six facets. Older people with mild cognitive impairment showed a significantly reduced QOL compared to their cognitively healthy counterparts. This holds true for the physical, psychological, social, and environment domains of the WHOQOL-BREF and in five of the six facets covered by the instrument WHOQOL-OLD (with exception of the facet which assesses worries about death and dying). Influences of socio-demographic indicators and health related aspects on QOL are assessed. The fact, that mild cognitive disorders are associated with such a significant reduction in QOL for those affected, received little attention so far and may warrant interventions.