15 research outputs found

    Psychological impact of lymphoma on adolescents and young adults:Not a matter of black or white

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    Contains fulltext : 171302.pdf (publisher's version ) (Open Access)PURPOSE: The purpose of the study is to examine differences in perceived impact of cancer (IOC) between adolescents and young adults (AYAs; 18-35 years at cancer diagnosis), adults (36-64 years) and elderly (65-84 years) with a history of (non-)Hodgkin lymphoma. Furthermore, to investigate the association of socio-demographic, clinical and psychological characteristics with IOC; and the association between IOC and health-related quality of life (HRQoL) among AYAs only. METHODS: This study is part of a population-based PROFILES registry survey among lymphoma patients diagnosed between 1999 and 2009. Patients (n = 1.281) were invited to complete the IOCv1 and EORTC-QLQ-C30 questionnaires. Response rate was 67 % (n = 861). RESULTS: AYA lymphoma survivors scored higher on the positive IOC summary scale, compared to adult and elderly patients (p < 0.001), while no significant differences were observed for negative IOC. Among AYAs, females, survivors with a partner, and survivors with elevated psychological distress levels scored significantly higher on the negative IOC summary scale. The negative IOC summary scale was negatively associated with all EORTC QLQ-C30 functioning scales (beta ranging from -0.39 to -0.063; p < 0.05). The positive IOC summary scale was negatively associated with the EORTC QLQ-C30 subscale 'Emotional functioning' (beta = -0.24; p < 0.05). CONCLUSION: AYA, adult and elderly with a history of (non-)Hodgkin lymphoma experienced different types of IOC in terms of positive and negative aspects. IMPLICATIONS FOR CANCER SURVIVORS: Although AYAs experience a more positive IOC compared to older survivors, some AYAs experience more negative IOC and may require developmentally appropriate interventions to address their specific concerns

    Circulating desmosine levels do not predict emphysema progression but are associated with cardiovascular risk and mortality in COPD

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    Elastin degradation is a key feature of emphysema and may have a role in the pathogenesis of atherosclerosis associated with chronic obstructive pulmonary disease (COPD). Circulating desmosine is a specific biomarker of elastin degradation. We investigated the association between plasma desmosine (pDES) and emphysema severity/progression, coronary artery calcium score (CACS) and mortality. pDES was measured in 1177 COPD patients and 110 healthy control subjects from two independent cohorts. Emphysema was assessed on chest computed tomography scans. Aortic arterial stiffness was measured as the aortic–femoral pulse wave velocity. pDES was elevated in patients with cardiovascular disease (p&lt;0.005) and correlated with age (rho=0.39, p&lt;0.0005), CACS (rho=0.19, p&lt;0.0005) modified Medical Research Council dyspnoea score (rho=0.15, p&lt;0.0005), 6-min walking distance (rho=−0.17, p&lt;0.0005) and body mass index, airflow obstruction, dyspnoea, exercise capacity index (rho=0.10, p&lt;0.01), but not with emphysema, emphysema progression or forced expiratory volume in 1 s decline. pDES predicted all-cause mortality independently of several confounding factors (p&lt;0.005). In an independent cohort of 186 patients with COPD and 110 control subjects, pDES levels were higher in COPD patients with cardiovascular disease and correlated with arterial stiffness (p&lt;0.05). In COPD, excess elastin degradation relates to cardiovascular comorbidities, atherosclerosis, arterial stiffness, systemic inflammation and mortality, but not to emphysema or emphysema progression. pDES is a good biomarker of cardiovascular risk and mortality in COPD.Elastin degradation is a hallmark of emphysema and may have a role in the pathogenesis of atherosclerosis with COPD http://ow.ly/Y9Gs

    Shared medical appointments improve QOL in neuromuscular patients: a randomized controlled trial

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    Contains fulltext : 136817.pdf (publisher's version ) (Open Access)OBJECTIVE: To systematically study the effects of shared medical appointments (SMAs) compared with individual appointments for patients with a chronic neuromuscular disorder and their partners. METHODS: In this randomized controlled trial with a follow-up of 6 months, we included patients with a chronic neuromuscular disorder and their partners. Participants were randomly allocated to an SMA or an individual outpatient appointment. The primary outcome measure was patients' health-related quality of life (QOL) (36-Item Short Form Health Survey). Secondary outcome measures included self-efficacy, social support, patient and partner satisfaction with the appointment, and time available per patient. RESULTS: Two hundred seventy-two patients and 149 partners were included. Health-related QOL showed greater improvement in patients who had attended an SMA (mean difference 2.8 points, 95% confidence interval 0.0-5.7, p = 0.05). Secondary outcomes showed small improvements in the control group for satisfaction with the appointment (p = 0.01). Neurologists spent less time per patient during the SMAs: mean 16 minutes (range 11-30) vs. 25 minutes (range 20-30) for individual appointments. CONCLUSIONS: This study provides evidence that SMAs can improve aspects of QOL of patients with a chronic neuromuscular disorder. This could result in an alternative to individual appointments and improvements in both effectiveness and efficiency. Further research to optimize SMAs and to identify critical success factors seems warranted. These data extend evidence on SMAs for neurologic patients. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients with chronic neuromuscular disorders, SMAs improve QOL as compared with individual medical appointments

    Cost-effectiveness of shared medical appointments for neuromuscular patients

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    Contains fulltext : 154895.pdf (publisher's version ) (Open Access)OBJECTIVE: To assess whether shared medical appointments (SMAs) for neuromuscular patients represent a way of using clinicians' time efficiently without compromising quality of care for patients. METHODS: Patients with a chronic neuromuscular disease (NMD) (n = 272) were randomly allocated to either an SMA or a regular individual annual appointment and followed up for a period of 6 months. Data on resource utilization and quality of life (EQ-5D) were collected prospectively, using a health care perspective. Incremental costs and changes in quality-adjusted life-years (QALYs) were computed using a probabilistic decision model. Factors critical to the incremental cost-effectiveness of SMAs were explored in sensitivity analyses. RESULTS: No substantial differences between SMAs and individual visits in terms of costs per QALY were found (incremental cost-effectiveness ratio euro-960.00; 95% confidence interval euro-34,600.00, euro+36,800.00). Sensitivity analyses showed that the cost-effectiveness ratio was particularly sensitive to SMA group size and proportion of patients seeing their treating neurologist. CONCLUSIONS: Cost-effectiveness of SMAs did not show a significant difference vs that of individual appointments based on data from our randomized controlled trial. On the other hand, we were able to show that a minimum of 6 patients per SMA and 75% of patients attending their treating neurologist are specific conditions under which SMAs qualify as a cost-effective alternative. This implies that SMAs may be a means to increase productivity of the physician without compromising quality of care. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that SMAs are not significantly more cost-effective than individual appointments for patients with NMDs. The study lacks the precision to exclude important differences in cost-effectiveness between SMAs and individual appointments

    Molecular responses of human muscle to eccentric exercise

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    INTRODUCTION: In this study we describe the translation and psychometric evaluation of the Dutch Individualized Neuromuscular Quality of Life (INQoL) questionnaire. METHODS: Backward and forward translation of the questionnaire was executed, and psychometric properties were assessed on the basis of reliability and validity. RESULTS: Two hundred six patients were included in the study. Reliability analyses resulted in Cronbach alpha values of >0.70 for all subdomains. Known-group validity showed a significant correlation between INQoL scores and severity as well as age for the majority of subdomains. Item-total correlation for overall quality of life was satisfactory. Concurrent validity with the SF-36 and EQ-5D was good (range of Spearman correlation coefficients -0.43 to -0.76). CONCLUSIONS: This study resulted in a questionnaire that is appropiate for use in the Dutch-speaking population to measure quality of life among patients with a wide variety of muscle disorders. This confirms and extends data obtained in the UK, US, Italy, and Serbia. Muscle Nerve 51: 496-500, 2015

    Prostate cancer upgrading with serial prostate magnetic resonance imaging and repeat biopsy in men on active surveillance: are confirmatory biopsies still necessary?

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    Objectives: To investigate whether serial prostate magnetic resonance imaging (MRI) may guide the utility of repeat targeted (TBx) and systematic biopsy (SBx) when monitoring men with low-risk prostate cancer (PCa) at 1-year of active surveillance (AS). Patients and Methods: We retrospectively included 111 consecutive men with low-risk (International Society of Urological Pathology [ISUP] Grade 1) PCa, who received protocolled repeat MRI with or without TBx and repeat SBx at 1-year of AS. TBx was performed in Prostate Imaging-Reporting and Data System (PI-RADS) score ≥3 lesions (MRI-positive men). Upgrading defined as ISUP Grade ≥2 PCa (I), Grade ≥2 with cribriform growth/intraductal carcinoma PCa (II), and Grade ≥3 PCa (III) was investigated. Upgrading detected by TBx only (not by SBx) and SBx only (not by TBx) was investigated in MRI-positive and -negative men, and related to radiological progression on MRI (Prostate Cancer Radiological Estimation of Change in Sequential Evaluation [PRECISE] score). Results: Overall upgrading (I) was 32% (35/111). Upgrading in MRI-positive and -negative men was 48% (30/63) and 10% (5/48) (P < 0.001), respectively. In MRI-positive men, there was upgrading in 23% (seven of 30) by TBx only and in 33% (10/30) by SBx only. Radiological progression (PRECISE score 4–5) in MRI-positive men was seen in 27% (17/63). Upgrading (I) occurred in 41% (seven of 17) of these MRI-positive men, while this was 50% (23/46) in MRI-positive men without radiological progression (PRECISE score 1–3) (P = 0.534). Overall upgrading (II) was 15% (17/111). Upgrading in MRI-positive and -negative men was 22% (14/63) and 6% (three of 48) (P = 0.021), respectively. In MRI-positive men, there was upgrading in three of 14 by TBx only and in seven of 14 by SBx only. Overall upgrading (III) occurred in 5% (five of 111). Upgrading in MRI-positive and -negative men was 6% (four of 63) and 2% (one of 48) (P = 0.283), respectively. In MRI-positive men, there was upgrading in one of four by TBx only and in two of four by SBx only. Conclusion: Upgrading is significantly lower in MRI-negative compared to MRI-positive men with low-risk PCa at 1-year of AS. In serial MRI-negative men, the added value of repeat SBx at 1-year surveillance is limited and should be balanced individually against the harms. In serial MRI-positive men, the added value of repeat SBx is substantial. Based on this cohort, SBx is recommended to be performed in combination with TBx in all MRI-positive men at 1-year of AS, also when there is no radiological progression
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