Disease-specific Quality Of Life Research Articles

P1079 Mindfulness-based cognitive therapy to reduce psychological distress in patients with Inflammatory Bowel Disease: first results of a multicentre randomised controlled trial (MindIBD)

Abstract Background Many patients with Inflammatory Bowel Diseases (IBD) suffer from psychological distress and fatigue. Moreover they report a reduced quality of life. The availability of psychosocial treatment options is limited. As mindfulness-based cognitive therapy (MBCT) has been shown to reduce psychological distress and fatigue, and improve quality of life in other populations, MBCT might also be effective in patients with IBD. Methods The MindIBD study was a prospective, multicentre, randomised controlled trial, conducted in one academic and three general hospitals in the Netherlands. Patients of 16 years and older with a confirmed IBD diagnosis were eligible if the IBD was in remission (based on faecal calprotectin <250 mg/kg and no changes in IBD medication for at least three months) and they experienced at least mild psychological distress (based on Hospital Anxiety and Depression Scale (HADS) total score ≥ 11). Participants were allocated in the intervention group (MBCT plus treatment as usual) or control group (treatment as usual alone). Assessments were conducted at baseline, post-intervention (3 months) and at 6, 9 and 12 months after baseline. Primary outcome was the effect on psychological distress post-intervention. Secondary outcomes included fatigue, perceived disease control, disease activity, disease-specific quality of life and positive mental health. This trial was registered at ClinicalTrials.gov: NCT04646785. Results A total of 142 IBD patients were randomly assigned to the intervention group (n=70) or the control group (n=72). The study population had a median age of 50 years (IQR 39-59 years), consisted of 91 women (64%) and 68 participants (48%) were diagnosed with Crohn’s disease. Post-intervention, participants in the intervention group showed a mean decrease on the HADS total of 4.7 ± 6.3 points compared to a mean decrease of 1.2 ± 5.2 points in the control group. This difference in improvement of psychological distress was statistically significant (p<0.001), and this benefit was maintained during follow-up (p=0.005). MBCT did also result in a significant improvement on fatigue (p=0.022) and positive mental health (p=0.022) post-intervention. These improvements remained in favour of the intervention group during follow-up, although not significantly different. No differences were found on perceived disease control, disease activity and disease-specific quality of life. Conclusion MBCT reduces psychological distress and improves fatigue and positive mental health. Therefore MBCT can be considered as a valuable addition to the limited psychosocial interventions for patients with IBD to improve psychological distress, fatigue and positive mental health.

N02 Inflammatory bowel disease patients with impaired quality of life on biologic therapy benefit from the support of an IBD nurse specialist: Results of a randomized controlled trial in Germany (IBDBIO-ASSIST study) - The IBD nurses perspective

Abstract Background IBD nurses play an important role in the Multidisciplinary Team of managing patients with IBD. IBDBIO-ASSIST was a randomised controlled trial assessing the efficacy of care provided by an IBD nurse specialist in improving health-related quality of life (QoL) in IBD patients on biologic therapy in an outpatient setting in Germany. Methods In total, 1086 IBD patients on biologic therapy were randomly assigned to either a control group (CG) receiving usual IBD care or an intervention group (IG) receiving additional care from an IBD nurse. Two IBD nurses per site received an extra study specific IBD training before including patients. The primary outcome was disease-specific QoL (sIBDQ) assessed at months (M) 6, 12, and 18. In addition, IBD nurses provided a final assessment of various aspects of their work in the context of the study at M6 (T0) and M15 (T1), and patients were asked about their satisfaction level with the IBD nurses. Results The analysis of patients with impaired QoL at baseline (EQ-VAS < 75 [median]), showed an improvement in sIBDQ over 6 M that became significant at M12 and remained significant through M18 (baseline: IG 4.24; CG 4.31; M18: IG 5.02; CG 4.76; P= .017) (Table 1). Regarding the 5 aspects of fun, usefulness, successful discussions in consultations with patients, successful support of patients, and appreciation by patients, the nurses expressed positive assessments (“completely” and “rather”) at both measurement points, with values of more than 90% (Fig. 1). About 20% to 30% of the nurses reported being rather dissatisfied with two aspects of their jobs: time and space resources for discussions and recognition by physicians. 94% of patients in the IG felt that the additional care provided by the IBD nurses was highly beneficial. Conclusion IBD patients with impaired QoL derived a significant benefit from the additional care provided by an IBD nurse specialist, leading to meaningful improvements in sIBDQ over the long term. The survey results from the IBD nurses and patients in the IG revealed a very positive perception of the new form of care. It is noteworthy that an improvement in care provision was reported both by the nurses and the participating patients. Some physicians also experienced benefits from the intervention as they were relieved of certain time-consuming tasks by the IBD nurses. It should be noted that more than 20% of the IBD nurses did not feel sufficiently appreciated by physicians, and about 30% criticised the lack of time and space resources. When introducing the IBD nurse-led care concept into usual practice, these aspects should be considered.

Ecological momentary assessment of pelvic pain and urinary urgency variability in urologic chronic pelvic pain syndrome and their association with illness impact and quality of life: Findings from the multidisciplinary approach to the study of chronic pelvic pain symptom patterns study.

This study tested the hypothesis that ecological momentary assessment (EMA) of pelvic pain (PP) and urinary urgency (UU) would reveal unique Urologic Chronic Pelvic Pain Syndrome (UCPPS) phenotypes that would be associated with disease specific quality of life (QOL) and illness impact metrics (IIM). A previously validated smart phone app (M-app) was provided to willing Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) participants. M-app notifications were sent 4-times daily for 14 days inquiring about PP and UU severity. A clustering algorithm that accounted for variance placed participants into PP and UU variability? clusters. Associations between clusters and QOL and IIM were then determined. A total of 204 participants enrolled in the M-app study (64% female). M-app compliance was high (median 63% of surveys). Cluster analysis revealed k = 3 (high, low, none) PP clusters and k = 2 (high, low) UU clusters. When adjusting for baseline pain severity, high PP variability, but not UU variability, was strongly associated with QOL and IIM; specifically worse mood, worse sleep and higher anxiety. UU and PP clusters were associated with each other (p < 0.0001), but a large percentage (33%) of patients with high PP variability had low UU variability. PP variability is an independent predictor of worse QOL and more severe IIM in UCPPS participants after controlling for baseline pain severity and UU. These findings suggest alternative pain indices, such as pain variability and unpredictability, may be useful adjuncts to traditional measures of worst and average pain when assessing UCPPS treatment responses.

Pre-treatment expectations and their influence on subjective symptom change in Crohn's disease

BackgroundTreatment expectations reportedly shape treatment outcomes, but have not been studied in the context of multimodal therapy in Crohn's disease (CD). Therefore, the current study investigated the role of treatment expectations for subjective symptom changes in CD patients who have undergone an integrative multimodal therapy program. MethodsValidated questionnaires were completed at the start of the treatment program and post intervention. Pre-treatment expectations and experienced symptom change were assessed with the Generic Rating Scale for Previous Treatment Experiences, Treatment Expectations, and Treatment Effects (GEEE); stress levels were quantified with the Perceived Stress Scale (PSS-10) and disease specific quality of life was quantified with the disease-specific Inflammatory Bowel Disease Questionnaire (IBDQ). We performed multiple linear and Bayesian regression to determine how expectations related to symptom change. ResultsN = 71 CD patients (66.2% female) were included. Stronger expectations regarding symptom improvement (b = 0.422, t = 3.70, p < .001) were associated with higher experienced symptom improvement. Additionally, Bayesian analysis provided strong evidence for including improvement expectations as a predictor of improvement experience (BFinclusion = 13.78). ConclusionsIn line with research in other disorders, we found that positive treatment expectations were associated with experienced symptom improvement. In contrast, we found no indication that an experience of symptom worsening was associated with positive or negative baseline treatment expectations. Induction of positive expectations might be a potential avenue for improving treatment outcomes in CD therapy.

Single-centre prospective cohort study investigating the associations and one-year trends of frailty, cognition, disability and quality of life pre- and post-intervention for chronic limb-threatening ischaemia

Abstract Background: Half of people with chronic limb-threatening ischaemia (CLTI) have frailty. This study aimed to describe the associations of frailty with cognition, disability and quality of life (QoL) among CLTI patients over 1 year following surgical or endovascular procedures. Methods: A single-centre prospective cohort study was undertaken. Patients undergoing a procedure for CLTI between May 2019 and May 2021 were eligible (minimum age &gt;65 initially; &gt;50 from November 2019). Participants underwent preoperative assessments for frailty, physical and cognitive function, disability, mood, disease-specific QoL (Vascular QoL questionnaire (VascuQoL)) and generic health-related QoL (EuroQoL EQ-5D-5L). Follow-up was at 3 months (clinic or telephone) and 12 months (telephone). Baseline frailty was assessed using both the Edmonton frail scale (EFS) and the clinical frailty scale (CFS). Frailty during follow-up was re-assessed at 3 and 12 months using the CFS as it can be performed via telephone. Associations of baseline frailty with disability, QoL and mood scores during follow-up were investigated using repeated measures mixed models. Results: Ninety-nine patients completed the baseline assessments. Forty-five (45%) were classified as frail by the EFS. Frailty was associated with a higher prevalence of cognitive impairment based on the Montreal cognitive assessment (52% vs 17%; p&lt;0.001). Eighty-seven patients were eligible for follow-up. Baseline frailty (EFS) was associated with worse QoL scores at all timepoints (VascuQoL p=0.001; EQ-5D-5L p&lt;0.001). Both those with and without frailty at baseline (EFS) had modest improvement in QoL scores at 12 months (VascuQoL p&lt;0.001; EQ-5D-5L p=0.001). Barthel index (disability) scores were lower for those with frailty at baseline (EFS) (p&lt;0.001) and decreased slightly over 12 months for both groups (p=0.007). Five patients (12%) transitioned from frailty to non-frailty at 12 months based on the CFS. However, 10 patients (23%) transitioned from non-frailty to frailty. Conclusions: CLTI patients with frailty have worse QoL and greater disability both pre- and post-intervention. However, they demonstrate similar QoL benefit to those without frailty at 1 year following intervention. Baseline frailty assessment is important to inform prognostic discussions, expectations and shared decision making in CLTI.

Clinically important changes and adverse events with centre-based or home-based pulmonary rehabilitation in chronic respiratory disease: A systematic review and meta-analysis.

Objectives: To determine the proportion of people who achieve minimal clinically important differences (MCID) with centre-based or home-based pulmonary rehabilitation and to synthesise data on adverse events.Methods: Cochrane reviews and electronic databases were searched to identify randomised trials comparing centre-based to home-based pulmonary rehabilitation, or either model to usual care, in people with chronic respiratory disease. Primary outcomes were the proportion of participants achieving MCIDs in exercise capacity and disease-specific quality of life. Secondary outcomes were symptoms and adverse events. Cochrane Risk of Bias 1.0 and GRADE were used to assess the risk of bias and certainty of evidence respectively.Results: Forty-nine trials were eligible. Compared to usual care, a higher proportion of pulmonary rehabilitation participants achieved the MCID for exercise capacity (6MWT: 47% vs 20%, p = 0.11), dyspnoea (43% vs 29%, p = 0.0001), fatigue (48% vs 27%, p = 0.0002) and emotional function (37% vs 25%, p = 0.02), with all of these between group differences statistically significant except for exercise capacity. There were no differences between centre-based and home-based pulmonary rehabilitation in the proportion of participants who achieved MCIDs (34%- 58% across studies). Ninety percent of trials reported no adverse events. Certainty of evidence was low-to- moderate with all outcomes except for CRQ-mastery (centre-based vs home-based pulmonary rehabilitation, or pulmonary rehabilitation vs usual care in COPD), ESWT (pulmonary rehabilitation vs usual care in COPD) and 6MWT (pulmonary rehabilitation vs usual care in bronchiectasis) where evidence was very uncertain.Discussion: Clinically meaningful outcomes are achieved by similar proportions of participants in centre-based and home-based pulmonary rehabilitation, with few adverse events. Reporting of trial outcomes according to MCIDs is necessary for informed decision making regarding pulmonary rehabilitation models.

Cumulative occupational exposure to gases and fumes is associated with impairment in lung function and disease-related quality of life in a German COPD patient cohort

ObjectivesThe impact of occupational exposures on lung function impairments and quality of life (QoL) in patients with chronic obstructive pulmonary disease (COPD) was analysed and compared with that of smoking.MethodsData...

Reliability and validity of the Turkish version of the New Cleveland Clinic Colorectal Cancer Quality of Life Questionnaire.

This study aims to adapt and validate the Cleveland Clinic Colorectal Cancer Quality of Life Questionnaire (CCF-CaQL) in Turkish, addressing the significant need for reliable, language-specific QoL measures for colorectal cancer (CRC) in Turkiye. This effort fills a critical gap in CRC patient care, enhancing both patient-provider communication and disease-specific QoL assessment. The CCF-CaQL was translated into Turkish, verified for accuracy, and reviewed for clarity and relevance. Eligible patients who underwent colorectal surgery for cancer between July 2021 and July 2022 from six hospitals completed the CCF-CaQL and SF-36 questionnaires. For analysis, confirmatory factor analysis using Smart PLS 4 and descriptive statistics were employed. The questionnaire's reliability and validity were assessed using Cronbach alpha, composite reliability, and the heterotrait-monotrait (HTMT) ratio, along with multicollinearity checks and factor loadings. Nonparametric resampling was used for precise error and confidence interval calculations, and the Spearman coefficient and split-half method were applied for reliability testing. In the study involving 244 colorectal cancer patients, confirmatory factor analysis of the CCF-CaQL indicated effective item performance, with one item removed due to lower factor loading. The questionnaire exhibited high internal consistency, evidenced by a Cronbach alpha value of 0.909. Convergent validity was strong, with all average variance extracted (AVE) values exceeding 0.4. Discriminant validity was confirmed with HTMT coefficients below 0.9, and no significant multicollinearity issues were observed (VIF values < 10). Parallel testing with the SF-36 scale demonstrated moderate to very strong correlations, affirming the CCF-CaQL's comparability in measuring quality of life. The Turkish version of the CCF-CaQL was validated for assessing quality of life in colorectal cancer patients. This validation confirms its reliability and cultural appropriateness for use in Turkiye. The disease-specific nature of the CCF-CaQL makes it a useful tool in clinical and research settings, enhancing patient care by accurately monitoring treatment effects and interventions in the Turkish colorectal cancer patient population.

One-pass deep brain stimulation of subthalamic nucleus and ventral intermediate nucleus for levodopa-resistant tremor-dominant Parkinson's disease.

Tremor-dominant Parkinson's disease (TD-PD) can be further separated into levodopa-responsive and levodopa-resistant types, the latter being considered to have a different pathogenesis. Previous studies indicated that deep brain stimulation (DBS) of the subthalamic nucleus (STN) or the globus pallidus internus (GPi) individually was not sufficient for tremor control, especially for the levodopa-resistant TD-PD (LRTD-PD). The thalamic ventral intermediate nucleus (VIM) has been regarded as a potent DBS target for different kinds of tremors. Therefore, we focused on the LRTD-PD subgroup and performed one-pass combined DBSs of STN and VIM to treat refractory tremors, aiming to investigate the safety and effectiveness of this one-trajectory dual-target DBS scheme. We retrospectively collected five LRTD-PD patients who underwent a one-pass combined DBS of STN and VIM via a trans-frontal approach. The targeting of VIM was achieved by probabilistic tractography. Changes in severity of symptoms (measured by the Unified Parkinson Disease Rating Scale part III, UPDRS-III), levodopa equivalent daily doses (LEDD), and disease-specific quality of life (measured by the 39-item Parkinson's Disease Questionnaire, PDQ-39) were evaluated. Three-dimensional reconstruction of electrodes illustrated that all leads were successfully implanted into predefined positions. The mean improvement rates (%) were 53 ± 6.2 (UPDRS-III), 82.6 ± 11.4 (tremor-related items of UPDRS), and 52.1 ± 11.4 (PDQ-39), respectively, with a mean follow-up of 11.4 months. One-pass combined DBS of STN and VIM via the trans-frontal approach is an effective and safe strategy to alleviate symptoms for LRTD-PD patients.

Impact of text reminders on pneumatic compression device (PCD) compliance in patients with breast cancer-related lymphedema

PurposeDo cell phone text reminders impact the rate of compliance with pneumatic compression device (PCD) therapy among women with breast cancer-related lymphedema (BCRL)?MethodsA prospective, randomized, 2-group feasibility study conducted at 2 centers. Participants were adult females (≥18 years old) with unilateral BCRL who had the capability of receiving reminder text messages. All participants underwent PCD therapy. Participants were randomized 1:1 to control (no text messages) or test group (received text message reminders if the PCD had not been used for 2 consecutive days). The rate of compliance between treatment groups was the main outcome measure. Secondary outcome measures were changes in arm girth, quality of life (QOL), and symptom severity.ResultsTwenty-nine participants were enrolled and randomized, 25 were available for follow-up at 60 days (14 test, 11 control). Overall, 52.2% (12/23) of all participants were completely compliant, an additional 43.5% (10/23) were partially compliant, and 1 patient (4.3%) was noncompliant. The test and control groups did not differ in device compliance. In the pooled population, weight, BMI, and arm girth were improved. Overall disease-specific QOL and symptom severity were improved. Regression analysis showed benefits were greater among participants with higher rates of compliance.ConclusionsAutomated text reminders did not improve compliance in patients with BCRL as compliance rates were already high in this patient population. Improvements in weight, BMI, arm girth, disease-specific quality of life, and symptom severity measures were observed regardless of the treatment assignment. Full compliance resulted in greater functional and QOL benefits.Trial registrationThe study was registered at www.clinicaltrials.gov (NCT04432727) on June 16, 2020.

Sexual quality of life in patients with pemphigus: A case-control study.

Pemphigus, an autoimmune blistering disease that affects the skin and mucous membranes, significantly impairs the quality of life (QoL) of affected individuals. While there are a variety of QoL measurement tools available for assessing this disease, there is a lack of studies that specifically evaluate the sexual QoL of patients with pemphigus. This case-control study aims to investigate the impact of the disease on sexual activity as well as its overall effect on QoL. Fifty pemphigus patients, who were referred to the Dermatology Department at the University Hospital of Brescia in the period March 2019-September 2021, completed several QoL surveys, including the 36-item Short Form Health survey (SF-36), the 12-Item General Health Questionnaire (GHQ-12), the Autoimmune Bullous Disease Quality of Life (ABQOL) and either the International Index of Erectile Function (IIEF) or the Female Sexual Function Index (FSFI). The severity of the disease was assessed using the Pemphigus Disease Area Index (PDAI). Differences in QoL surveys between the case and control groups were analysed using either the t-test or the Wilcoxon-Mann-Whitney test. The correlation between QoL surveys in pemphigus patients and disease severity were analysed using Spearman's coefficient (r). The results revealed a marked impairment in overall QoL among patients with pemphigus compared to the healthy control subjects. Significant differences were observed in various domains of QoL, including physical health, mental well-being, social functioning and, notably, sexual health. Furthermore, disease severity as evaluated by the PDAI showed correlations with specific aspects of health status, and disease-specific QoL demonstrated associations with nearly all domains of health status. No significant correlations were found between sexual activity, mucosal involvement or steroid therapy and PDAI scores or disease-specific QoL measures. These findings emphasize the significant impact of pemphigus on patients' well-being, with particular attention to the impaired sexual activity.

Chemotherapy reduces long-term quality of life in recurrence-free colon cancer survivors (LaTE study)-a nationwide inverse probability of treatment-weighted registry-based cohort study and survey.

Stage III colon cancer is routinely treated with adjuvant chemotherapy, which causes significant short-term morbidity. Its effect on long-term quality of life (QoL) is poorly investigated. The aim of this study was to investigate long-term QoL after curative treatment for colon cancer and explore the impact of chemotherapy on general and disease-specific QoL. All patients aged under 75 years operated on for colon cancer between 30 September 2007 and 1 October 2019 were identified by the Cancer Registry of Norway. Exclusion criteria were distant metastasis, recurrence, dementia and rectal/rectosigmoid cancer operation. The primary outcome measure was Gastrointestinal Quality of Life Index (GIQLI). Secondary outcome measures included the Short Form Health Survey (SF-36). To achieve balanced groups when assessing differences in outcome measures the analyses were weighted by inverse probability weights based on a multiple logistic regression model with prechosen confounders. A total of 8627 patients were invited and 3109 responded (36% response rate). After exclusions 3025 patients were included, of whom 1148 (38%) had received adjuvant chemotherapy and 1877 (62%) had surgery alone, with mean follow-up of 75.5 versus 74.5 months, respectively. The GIQLI differed significantly between the groups [mean 111.0 (SD 18.4) vs. 115.6 (SD 17.8), respectively; mean difference: -4.6 (95% CI -5.9; -3.2); p < 0.001]. Those with the highest neurotoxicity exhibited the lowest GIQLI. The adjuvant chemotherapy group scored significantly lower in six of eight SF-36 domains compared with the surgery alone group. The main differences were found in social, physical and emotional function. Long-term QoL was significantly lower in patients who received adjuvant chemotherapy than in patients who did not. Neurotoxicity was closely related to reduced QoL in these patients. The low response rate limits the generalizability of the results.

Quality of Life After Percutaneous Coronary Intervention Versus Coronary Artery Bypass Grafting.

Differences in quality of life (QoL) after coronary artery bypass grafting (CABG) compared with percutaneous coronary intervention (PCI) are not well characterized. We aimed to compare the short- and long-term effects of CABG versus PCI on QoL. We performed a systematic review and meta-analysis of randomized controlled trials comparing CABG versus PCI using the Seattle Angina Questionnaire (SAQ)-Angina Frequency, SAQ-QoL, SAQ-Physical Limitations, EuroQoL-5D, and Short-Form Questionnaire. We calculated mean changes within each group from baseline to 1, 6, 12, and 36 to 60 months (latest follow-up) and the weighted mean differences between groups using inverse-variance methods. A total of 10 760 patients were enrolled in 5 trials. From baseline to 12 months and 36 to 60 months, the mean change in SAQ-Angina Frequency was >22 points (95% CI, 21.0-25.6) after both PCI and CABG. The mean difference in SAQ-Angina Frequency was similar between procedures at 1 month and at 36 to 60 months but favored CABG at 12 months (1.97 [95% CI, 0.68-3.26]). SAQ-QoL favored PCI at 1 month (-2.92 [95% CI, -4.66 to -1.18]) and CABG at 6 (2.50 [95% CI, 1.02-3.97]), 12 (3.30 [95% CI, 1.78-4.82]), and 36 to 60 months (3.17 [95% CI, 0.54 5.80). SAQ-Physical Limitations (-12.61 [95% CI, -16.16 to -9.06]) and EuroQoL-5D (-0.07 [95% CI, -0.08 to -0.07) favored PCI at 1 month. Short-Form Questionnaire-Physical Component favored CABG at 12 months (1.18 [95% CI, 0.46-1.90]). Both PCI and CABG improved long-term disease-specific and generic QoL.

Clinical phenotypes of COPD and their impact on quality of life: A cross-sectional study

BackgroundA Chronic Obstructive Pulmonary Disease (COPD) phenotype is a single or group of disease characteristics that describe differences between individuals based on clinically important factors such as symptoms, exacerbations, morbidity, and treatment responses. Many studies estimated the prevalence of various phenotypes, but very few studies looked into their quality of life. We aimed to estimate the prevalence of different COPD phenotypes and their disease-specific Health-Related Quality of Life (HRQoL). Materials and methodsThe prospective study, with a sample size of 136, was conducted between May 2021 and December 2022 in a tertiary teaching institute. Based on their clinical features, COPD patients were classified into 4 different clinical phenotypes, and their disease-specific quality of life was assessed using St. George Respiratory Questionnaire-COPD(SGRQ-c) and COPD Assessment Test (CAT) questionnaires. ResultsAmong 136 COPD patients, the frequency of Non-Exacerbator (NE), Exacerbator Emphysema (EEM), Exacerbator Chronic Bronchitis (ECB), and Asthma COPD overlap (ACO) phenotypes was 79(58.1 %), 16(11.8 %), 31(22.8 %), and 10(7.4 %) respectively. Based on the SGRQ-c score, the ECB and EEM phenotypes had a significantly poorer Quality of life (QoL) when compared with NE(P<0.0001), ACO(P=0.011), phenotypes. Similarly, ECB and EEM phenotypes had significantly poorer QoL when compared to NE(P<0.0001), and ACO(P=0.015), based on the CAT score. ECB and EEM patients also had the worst scores in all individual CAT items and SGRQ-c components. ConclusionNE was the most common followed by ECB phenotype. ECB and EEM phenotypes recorded the poorest quality of life without any significant differences among them. Further research is needed in the future to determine whether phenotype-specific therapies can produce better clinical outcomes.

Influence of depressive disorders, stress, and personality traits on quality of life after cochlear implantation

PurposeThis study aimed to determine whether preoperative depressiveness, stress, and personality influence quality of life (QOL) after cochlear implant (CI) surgery.MethodsIn this prospective study, 79 patients undergoing CI surgery were evaluated preoperatively and 12 months postoperatively. Disease-specific QOL was assessed with the Nijmegen Cochlear Implant Questionnaire (NCIQ) and general QOL with the WHOQOL-BREF. Depressiveness and stress were assessed with the Patient Health Questionnaire (PHQ-D). The Charlson Comorbidity Index (CCI) was used to classify comorbidities. The Big Five Personality Test (B5T) was used to assess the basic personality dimensions. Speech comprehension was evaluated in quiet with the Freiburg monosyllable test and in noise with the Oldenburg sentence test.ResultsAfter CI surgery, the total NCIQ score improved significantly (Δ 17.1 ± 14.7, p < 0.001). General QOL (WHOQOL-BREF, Δ 0.4 ± 9.9, p = 0.357), stress (Δ 0.25 ± 3.21, p = 0.486), and depressiveness (Δ 0.52 ± 3.21, p = 0.121) were unaffected by CI surgery. Patients without elevated depressiveness (p < 0.01) or stress (p < 0.001) had significantly better total NCIQ scores. The results of the multiple regression analyses show that, after adjusting for the CCI, personality, age, and mental health stress (ß = − 0.495, p < 0.001) was significantly associated with postoperative NCIQ outcome scores. Depressiveness and neuroticism had the strongest influence on the generic QOL (ß = − 0.286 and ß = − 0.277, p < 0.05).ConclusionStress symptoms and personality traits are significant predictive factors for disease-specific QOL, as well as hearing status. This should be considered in the preoperative consultation and in optimizing the rehabilitation process.

Neighborhood Social Vulnerability Impacts Quality of Life in Kidney Stone Patients.

This study aimed to investigate the association between social vulnerability, as measured by the Centers for Disease Control and Prevention's Social Vulnerability Index (SVI), and the quality of life (QoL) of kidney stone patients using the validated Wisconsin Stone Quality of Life Questionnaire (WISQOL). A retrospective analysis was conducted on medical records of new urolithiasis patients who completed the WISQOL at the University of Rochester Medical Center kidney stone clinic. The primary outcome was WISQOL score, which was measured across multiple domains. SVI was used to assess social vulnerability. Neighborhoods with high SVI were defined by a threshold greater than or equal to the 75th percentile nationally. Demographic and clinical data were collected. Statistical analyses, including univariate tests and multivariate linear regression, were performed to evaluate the relationships between social vulnerability and disease-specific QoL. A total of 1718 patients were included in the study. One hundred five subjects (6.1%) were from neighborhoods of high social vulnerability. Patients residing in neighborhoods with high social vulnerability (SVI quartile) reported significantly lower QoL scores (69.1 vs 77.2; P = .001) and this persisted across all domains, including social impact (32.6 vs 35.1; P = .002), emotional impact (25.2 vs 27.5; P = .006), disease impact (28.5 vs 31.4; P = .001), and vitality (10.3 vs 11.2; P = .015). Younger age, female sex, and higher number of comorbidities were identified as independent predictors of lower QoL scores. However, non-White race and Latinx ethnicity did not exhibit a significant association with QoL scores. These findings highlight the negative impact of high social vulnerability on QoL, emphasizing the importance of considering socioeconomic factors in patient care. These results emphasize the need for targeted interventions to support vulnerable populations. While this study offers initial insights, further research is essential to corroborate these outcomes across larger and more diverse populations.

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

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

App-Controlled Treatment Monitoring and Support for Patients With Head and Neck Cancer Undergoing Radiotherapy: Results From a Prospective Randomized Controlled Trial.

Head and neck cancers (HNCs) are very common malignancies, and treatment often requires multimodal approaches, including radiotherapy and chemotherapy. Patients with HNC often display a high symptom burden, both due to the disease itself and the adverse effects of the multimodal therapy. Close telemonitoring of symptoms and quality of life during the course of treatment may help to identify those patients requiring early medical support. The App-Controlled Treatment Monitoring and Support for Patients With Head and Neck Cancer (APCOT) trial aimed to investigate the feasibility of integrating electronic patient-reported outcomes (ePROs) in the treatment surveillance pathway of patients with HNC during the course of their radiotherapy. Additionally, the influence of app-based ePRO monitoring on global and disease-specific quality of life and patient satisfaction with treatment was assessed. Patients undergoing radiotherapy for histologically proven HNCs at the Department of Radiation Oncology, University Medical Center Freiburg, Germany, were enrolled in this trial and monitored by weekly physician appointments. Patients were randomized between additional ePRO monitoring on each treatment day or standard-of-care monitoring. Feasibility of ePRO monitoring was defined as ≥80% of enrolled patients answering ≥80% of their daily app-based questions. Quality of life and patient satisfaction were assessed by the European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (QLQ-C30), the head and neck cancer module (H&N35), and the validated Patient Satisfaction Questionnaire Short Form (PSQ-18) at the completion of treatment and compared between trial arms. A total of 100 patients were enrolled in this trial, and 93 patients were evaluable. All patients (100%) in the experimental arm answered ≥80% of the ePRO questions during treatment, reaching the predefined threshold for the feasibility of ePRO monitoring (P<.001 in the binomial test). No clinical or patient-specific factor was found to influence feasibility. Global health and most domains of the general quality of life were comparable between trial arms, but an increased HNC-specific symptom burden was reported by patients undergoing ePRO surveillance. ePRO monitoring resulted in improved patient satisfaction regarding interpersonal manners (P=.01), financial aspects (P=.01), and time spent with a doctor (P=.01). This trial demonstrated the feasibility of incorporating daily app-based ePRO surveillance for patients with HNC undergoing radiotherapy. Our data, for the first time, demonstrate that telemonitoring in this setting led to increased reporting of HNC-specific symptom burden and significantly improved several domains of patient satisfaction. Further analyses are needed to assess whether our findings hold true outside the context of a clinical trial. German Clinical Trials Register DRKS00020491; https://drks.de/search/en/trial/DRKS00020491.

Female sex and overweight are associated with a lower quality of life in patients with myasthenia gravis: a single center cohort study

BackgroundMyasthenia gravis (MG) affects individuals as a chronic autoimmune disease for many years. Commonly, chronic diseases significantly reduce the patients’ quality of life. Aiming to improve the future quality of life in MG, this study assessed the factors impacting quality of life. As gender-specific medicine is becoming increasingly important, this study also focused on understanding gender differences in the outcome of MG.MethodsThe study is a combined monocentric, retrospective and prospective database analysis of patient records based on 2,370 presentations of 165 patients with clinically, serologically and/or electrophysiologically confirmed MG over an observation period of up to 47 years. The data collection included the following parameters: antibody status, disease severity, age, medication use, gender, and disease duration. In addition, a prospective survey was conducted on the quality of life using the Myasthenia gravis-specific 15-item Quality of Life scale (MG-QoL15) and on the activities of daily living using the MG-specific Activities of Daily Living scale (MG-ADL).ResultsOf the 165 patients, 85 were male (51.5%) and 80 were female (48.5%). The remaining baseline characteristics (e.g. age and antibody status) were consistent with other myasthenia gravis cohorts. A high body mass index (BMI) (p = 0.005) and a high disease severity (p < 0.001) were significantly associated with lower disease-specific quality of life. Additionally, the quality of life in women with MG was significantly reduced compared to male patients (19.7 vs. 13.0 points in the MG-QoL15, p = 0.024). Gender differences were also observable in terms of the period between initial manifestation and initial diagnosis and women were significantly more impaired in their activities of daily living (MG-ADL) than men (4.8 vs. 3.0 points, p = 0.032).ConclusionWomen with MG had significantly poorer disease specific quality of life compared to men as well as patients with a higher BMI. In order to improve the quality of life, gender-specific medicine and further investigation regarding a modification of the quality of life by lowering the BMI are essential and necessary.Trial registrationStudy approval by the Ethics Committee of the University Medical Center Göttingen was granted (number 6/5/18).

QoL, CIs, QALYs, and Individualized Rehabilitation: The Clinical and Practical Benefits of Regularly Assessing the Quality of Life of Adult Cochlear Implant Recipients.

This study aimed to report quality of life (QoL) scores in unilateral cochlear implant (CI) users and to generate guidance for clinicians on using QoL measures to individualize CI counselling and rehabilitation and to increase access to CIs as a mode of rehabilitation. Participants (n = 101) were unilateral CI users with single-sided deafness (SSD; n = 17), asymmetrical hearing loss (AHL; n = 26), or bilateral hearing loss (Uni; n = 58). Generic QoL was assessed via the Health Utilities Index (HUI-3), and disease-specific QoL was assessed via the Speech, Spatial, and Qualities of Hearing scale (SSQ12) and Nijmegen CI Questionnaire (NCIQ) at preimplantation and at 6 and 12 months of CI use. All groups had significantly increased HUI-3 scores at both intervals. The SSD group showed significant benefit on the SSQ12 at visit 3, the AHL group showed significant benefit on the SSQ12 and most NCIQ subdomains at both intervals, and the Uni group showed significant benefit with both tests at both intervals. Unilateral CI recipients demonstrate improved QoL within the first 12 months of device use. Regular assessment with generic and disease-specific questionnaires has the potential to play an important role in personalizing treatment and possibly in increasing access to CI provision.