scholarly journals Patients suffering from psychological impairments following critical illness are in need of information

2020 ◽  
Vol 8 (1) ◽  
Author(s):  
Johan H. Vlake ◽  
Michel E. van Genderen ◽  
Anna Schut ◽  
Martijn Verkade ◽  
Evert-Jan Wils ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Critical Illness ◽  
Psychological Trauma ◽  
Icu Discharge ◽  
Information Brochure ◽  
The Impact ◽  
To Receive ◽  
Icu Treatment

Abstract Background Because critical illness survivors frequently experience several long-term psychological impairments altering quality of life after ICU, there is a trend towards increasing follow-up care, mainly via ICU follow-up clinics. Despite these and other initiatives, understanding of patient’s post-ICU needs to help them cope with their problems and subsequently improve quality of life is largely lacking. Our aim was therefore to assess the needs, expectations and wishes in ICU survivors to receive information with the purpose to help them better grasp ICU treatment. In addition, we assessed the perceived burden of psychological trauma after ICU treatment and the health-related quality of life (HRQoL) up to 2.5 years after ICU discharge. Methods In a multicentre, retrospective cross-sectional cohort study, the needs and preferred intervention methods were assessed using a self-composed inventory in adult mechanically ventilated ICU survivors (n = 43). Additionally, the Impact of Event Scale Revised, the Beck Depression Inventory, the EuroQol-5D-5L, and the Short-Form 12 were used to assess psychological burden and HRQoL. Results A substantial proportion of all ICU survivors (59%, 95% CI 44% to 74%) suffered from psychological impairments after ICU treatment. Seventy-five percent of these patients expressed a wish to receive information, but only 36% desired to receive this information using a commonly used information brochure. In contrast, 71% of these patients had a wish to receive information using a video film/VR. Furthermore, only 33% of these patients was satisfied with the information provided by their treating hospital. Patients with psychological PICS reported a worse HRQoL as compared to a normative Dutch sample (P < 0.001) and as compared to patients without psychological PICS (P < 0.01). Conclusions In a Dutch cohort of critical illness survivors, a substantial part of ICU survivors suffer from psychological impairments, such as PTSD and depression, which was associated with a worse HRQoL. These patients are in need of information, have no desire using an information brochure, but are willing to receive information using a video film/virtual reality module. These results support the exploration of such an intervention.

The Impact of Critical Illness on Perceived Health-Related Quality of Life During ICU Treatment, Hospital Stay, and After Hospital Discharge

CHEST Journal ◽  
2008 ◽  
Vol 133 (2) ◽  
pp. 377-385 ◽  
Author(s):  
Jose G.M. Hofhuis ◽  
Peter E. Spronk ◽  
Henk F. van Stel ◽  
Guus J.P. Schrijvers ◽  
Johannes H. Rommes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Critical Illness ◽  
Hospital Stay ◽  
Hospital Discharge ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Icu Treatment

scholarly journals Intensive care units follow-up: a scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e037725
Author(s):  
Danielle Prevedello ◽  
Marco Fiore ◽  
Jacques Creteur ◽  
J C Preiser
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Scoping Review ◽  
Grey Literature ◽  
Icu Discharge ◽  
Scoping Reviews ◽  
The Impact

IntroductionIncreasing numbers of patients are surviving critical illness, leading to growing concern about the potential impact of the long-term consequences of intensive care on patients, families and society as a whole. These long-term effects are together known as postintensive care syndrome and their presence can be evaluated at intensive care unit (ICU) follow-up consultations. However, the services provided by these consultations vary across hospitals and units, in part because there is no validated standard model to evaluate patients and their quality of life after ICU discharge. We describe a protocol for a scoping review focusing on models of ICU follow-up and the impact of such strategies on improving patient quality of life.Methods and analysisIn this scoping review, we will search the literature systematically using electronic databases (MEDLINE - from database inception to June 15th 2020) and a grey literature search. We will involve stakeholders as recommended by the Joanna Briggs Institute approach developed by Peters et al. The research will be conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines.Ethics and disseminationThis study does not require ethics approval, because data will be obtained through a review of published primary studies. The results of our evaluation will be published in a peer-reviewed journal and will also be disseminated through presentations at national and international conferences.

scholarly journals Design and conduct of a multicenter randomized clinical trial on the impact of a post-intensive care unit multidisciplinary follow-up on the quality of life (suivi-rea) (Preprint)

2021 ◽  
Author(s):  
Friedman Diane ◽  
Lamiae Grimaldi ◽  
Alain Cariou ◽  
Philippe Aegerter ◽  
Stéphane Gaudry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Controlled Trial ◽  
Social Evaluation ◽  
Double Blind ◽  
Icu Discharge ◽  
One Year ◽  
The Impact

UNSTRUCTURED Introduction: Critically ill patients are at risk to develop a Post-Intensive Care Syndrome (PICS), which is characterized by physical, psychological and cognitive impairments and dramatically impacts the quality of life. No intervention has been shown to improve the quality of life (QoL). Because of the interdependency of its domains, we hypothesized that a medical, psychological and social follow-up would improve the QoL by mitigating the PICS. Methods and analysis: We conducted a multicenter, double-blind, randomized controlled trial comparing a multidisciplinary to a standard post-ICU follow-up. In the intervention arm, multidisciplinary follow-up consisted of medical, psychological and social evaluation at ICU discharge and at 3, 6 and 12 months after ICU discharge. In the placebo group, patients were seen only at 12 months by the multidisciplinary team. The baseline characteristics at ICU discharge were collected in all patients. The primary outcome was the quality of life at one year, assessed with help of EuroQoL 5 dimensions (EQ5D). Secondary outcomes were mortality, cognitive, psychological and functional status, the social and professional reintegration as well as the rate of re-hospitalization and outpatient consultations at one year. The first patient was randomized on 20/12/2012 and the last patient on 01/09/2017 out of 546 patients who were enrolled across 11 ICUs. At present, data management is still ongoing, and all parties involved in the trial remain blinded. Ethics and dissemination – Research Ethics Committee of Saint-Germain-en-Laye, France, initial approval received on 08/07/2011. Results will be disseminated via peer-reviewed publication and presentation at international conferences. Trial registration: Clinicaltrials.gov identifier NCT01796509 (registered on 21/02/2013).

The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Giant Cell ◽  
Diffuse Type ◽  
Joint Function ◽  
Population Means ◽  
Sf 36 ◽  
Patient Reported ◽  
The Impact

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.

scholarly journals P181 Long-term improvement in axial spondyloarthritis clinical outcomes following 2-weeks of intensive education and rehabilitation: results from the Bath residential rehabilitation programme

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Rehabilitation Programme ◽  
Spinal Mobility ◽  
The Impact

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.

Psychiatric and psychosocial morbidity 1 year after epilepsy surgery

2020 ◽  
pp. 1-8
Author(s):  
S. Patel ◽  
M. Clancy ◽  
H. Barry ◽  
N. Quigley ◽  
M. Clarke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Surgical Treatment ◽  
Epilepsy Surgery ◽  
Refractory Epilepsy ◽  
Post Surgery ◽  
Axis I ◽  
Patients With Epilepsy ◽  
The Impact

Abstract Objectives: There is a high rate of psychiatric comorbidity in patients with epilepsy. However, the impact of surgical treatment of refractory epilepsy on psychopathology remains under investigation. We aimed to examine the impact of epilepsy surgery on psychopathology and quality of life at 1-year post-surgery in a population of patients with epilepsy refractory to medication. Methods: This study initially assessed 48 patients with refractory epilepsy using the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I), the Hospital Anxiety and Depression Scale (HADS) and the Quality of Life in Epilepsy Inventory 89 (QOLIE-89) on admission to an Epilepsy Monitoring Unit (EMU) as part of their pre-surgical assessment. These patients were again assessed using the SCID-I, QOLIE-89 and HADS at 1-year follow-up post-surgery. Results: There was a significant reduction in psychopathology, particularly psychosis, following surgery at 1-year follow-up (p < 0.021). There were no new cases of de novo psychosis and surgery was also associated with a significant improvement in the quality of life scores (p < 0.001). Conclusions: This study demonstrates the impact of epilepsy surgery on psychopathology and quality of life in a patient population with refractory surgery. The presence of a psychiatric illness should not be a barrier to access surgical treatment.

scholarly journals The course of peripheral neuropathy and its association with health-related quality of life among colorectal cancer patients

2020 ◽  
Author(s):  
Cynthia S. Bonhof ◽  
Lonneke V. van de Poll-Franse ◽  
Dareczka K. Wasowicz ◽  
Laurens V. Beerepoot ◽  
Gerard Vreugdenhil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Peripheral Neuropathy ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
The Impact

Abstract Purpose To gain more insight into the course of chemotherapy-induced peripheral neuropathy (CIPN) and its impact on health-related quality of life (HRQoL) in a population-based sample of colorectal cancer (CRC) patients up to 2 years after diagnosis. Methods All newly diagnosed CRC patients from four hospitals in the Netherlands were eligible for participation in an ongoing prospective cohort study. Patients (n = 340) completed questions on CIPN (EORTC QLQ-CIPN20) and HRQoL (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis. Results Among chemotherapy-treated patients (n = 105), a high sensory peripheral neuropathy (SPN) level was reported by 57% of patients at 1 year, and 47% at 2-year follow-up, whereas a high motor peripheral neuropathy (MPN) level was reported by 47% and 28%, at years 1 and 2, respectively. Linear mixed model analyses showed that SPN and MPN symptoms significantly increased from baseline to 1-year follow-up and did not return to baseline level after 2 years. Patients with a high SPN or MPN level reported a worse global quality of life and a worse physical, role, emotional, cognitive, and social functioning compared with those with a low SPN or MPN level. Conclusions Future studies should focus on understanding the mechanisms underlying CIPN so targeted interventions can be developed to reduce the impact of CIPN on patient’s lives. Implications for cancer survivors Patients need to be informed of both CIPN and the impact on HRQoL.

scholarly journals Evaluation of the quality of life of patients with oral cancer in Brazil

2006 ◽  
Vol 20 (4) ◽  
pp. 290-296 ◽  
Author(s):  
Fabiana Paula de Andrade ◽  
José Leopoldo Ferreira Antunes ◽  
Marcelo Doria Durazzo
Keyword(s):  
Quality Of Life ◽  
Oral Cancer ◽  
Clinical Characteristics ◽  
Posterior Part ◽  
Self Report ◽  
Life Questionnaire ◽  
Longitudinal Assessment ◽  
The Impact

This study performed a field trial of a Portuguese version of the University of Washington quality of life questionnaire (UW-QOL, 3rd version), aiming at appraising its ability to identify different patterns of health-related quality of life of patients with oral cancer in Brazil. Patients (N = 100) were interviewed as they were undergoing treatment for oral squamous cell carcinoma at a large Brazilian hospital ("Hospital das Clínicas", School of Medicine, University of São Paulo). The results were compared based on categories of socio-demographic and clinical characteristics of the patients. At a one-year follow-up, 20 patients had died, and 24 were considered dropouts. The remaining patients accounted for the longitudinal assessment of modifications in the self report of quality of life. Patients with larger tumours and neoplasms in the posterior part of the mouth presented significantly (p < 0.05) poorer indications of quality of life. Chewing was the poorest rated domain (35.0/100.0), and presented the highest proportion of complaints both at the baseline and at the follow-up assessments. The questionnaire allowed the identification of important contrasts (while comparing clinical characteristics) and similarities (while comparing socio-demographic status) among subsets of respondents, and it can contribute to reduce the impact of treatments and improve subsequent patient management.

Colorectal cancer survivors’ quality of life: a qualitative study of unmet need

2020 ◽  
pp. bmjspcare-2020-002190
Author(s):  
Amanda Drury ◽  
Sheila Payne ◽  
Anne-Marie Brady
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Unmet Need ◽  
Safety Net ◽  
The Impact

ObjectiveCancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.MethodsSemistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.ResultsFive themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.ConclusionsCancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.

Longitudinal Trends in Quality of Life and Physical Function in Frail Older Dialysis Patients: A Comparison of Assisted Peritoneal Dialysis and In-Center Hemodialysis

2019 ◽  
Vol 39 (2) ◽  
pp. 112-118 ◽  
Author(s):  
Osasuyi Iyasere ◽  
Edwina Brown ◽  
Fabiana Gordon ◽  
Helen Collinson ◽  
Richard Fielding ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Mixed Model ◽  
Rating Scale ◽  
Depression Scale ◽  
Dialysis Patients ◽  
The Impact ◽  
Assisted Peritoneal Dialysis

Background In-center hemodialysis (HD) has been the standard treatment for older dialysis patients, but reports suggest an associated decline in physical and cognitive function. Cross-sectional data suggest that assisted peritoneal dialysis (aPD), an alternative treatment, is associated with quality of life (QoL) outcomes that are comparable to in-center HD. We compared longitudinal changes in QoL between modalities. Methods We enrolled 106 aPD patients, matched with 100 HD patients from 20 renal centers in England and Northern Ireland. Patients were assessed quarterly for 2 years using the Hospital Anxiety and Depression Scale (HADS), SF-12 physical and mental scores, symptom score, Illness Intrusiveness Rating Scale (IIRS), Barthel's score, and the Renal Treatment Satisfaction Questionnaire (RTSQ). Mixed model analysis was used to assess the impact of dialysis modality on these outcomes during follow-up. P values were adjusted for multiple significance testing. Results Multivariate analysis showed no difference in any of the outcome measures between aPD and HD. Longitudinal trends in outcomes were also not significantly different. Higher age at baseline was associated with lower IIRS and RTSQ scores during follow-up. One-hundred and twenty-five (60.6%) patients dropped out of the study: 59 (28.6%) died, 61 (29.6%) withdrew during follow-up, and 5 (2.5%) were transplanted. Conclusions Quality of life outcomes in frail older aPD patients were equivalent to those receiving in-center HD. Assisted PD is thus a valid alternative to HD for older people with end-stage kidney disease (ESKD) wishing to dialyze at home.

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