scholarly journals Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol.

2021 ◽  
Author(s):  
Louise Sigfrid ◽  
Tom M Drake ◽  
Ellen Pauley ◽  
Edwin C Jesudason ◽  
Piero Olliaro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Outcome Measures ◽  
Symptom Onset ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
The Impact

Structured Abstract Objectives: The long-term consequences of severe Covid-19 requiring hospital admission are not well characterised. The objective of this study was to establish the long-term effects of Covid-19 following hospitalisation and the impact these may have on patient reported outcome measures. Design: A multicentre, prospective cohort study with at least 3 months follow-up of participants admitted to hospital between 5th February 2020 and 5th October 2020. Setting: 31 hospitals in the United Kingdom. Participants: 327 hospitalised participants discharged alive from hospital with confirmed/high likelihood SARS-CoV-2 infection. Main outcome measures and comparisons: The primary outcome was self-reported recovery at least ninety days after initial Covid-19 symptom onset. Secondary outcomes included new symptoms, new or increased disability (Washington group short scale), breathlessness (MRC Dyspnoea scale) and quality of life (EQ5D-5L). We compared these outcome measures across age, comorbidity status and in-hospital Covid-19 severity to identify groups at highest risk of developing long-term difficulties. Multilevel logistic and linear regression models were built to adjust for the effects of patient and centre level risk factors on these outcomes. Results: In total 53.7% (443/824) contacted participants responded, yielding 73.8% (327/443) responses with follow-up of 90 days or more from symptom onset. The median time between symptom onset of initial illness and completing the participant questionnaire was 222 days (Interquartile range (IQR) 189 to 269 days). In total, 54.7% (179/327) of participants reported they did not feel fully recovered. Persistent symptoms were reported by 93.3% (305/325) of participants, with fatigue the most common (82.8%, 255/308), followed by breathlessness (53.5%, 175/327). 46.8% (153/327) reported an increase in MRC dyspnoea scale of at least one grade. New or worse disability was reported by 24.2% (79/327) of participants. Overall (EQ5D-5L) summary index was significantly worse at the time of follow-up (median difference 0.1 points on a scale of 0 to 1, IQR: -0.2 to 0.0). Females under the age of 50 years were five times less likely to report feeling recovered (adjusted OR 5.09, 95% CI 1.64 to 15.74), were more likely to have greater disability (adjusted OR 4.22, 95% CI 1.12 to 15.94), twice as likely to report worse fatigue (adjusted OR 2.06, 95% CI 0.81 to 3.31) and seven times more likely to become more breathless (adjusted OR 7.15, 95% CI 2.24 to 22.83) than men of the same age. Conclusions: Survivors of Covid-19 experienced long-term symptoms, new disability, increased breathlessness, and reduced quality of life. These findings were present even in young, previously healthy working age adults, and were most common in younger females. Policymakers should fund further research to identify effective treatments for long-Covid and ensure healthcare, social care and welfare support is available for individuals with long-Covid.  

scholarly journals Long-term patient satisfaction and durability of laparoscopic anti-reflux surgery in a large Danish cohort: study protocol for a retrospective cohort study with development of a novel scoring system for patient selection

BMJ Open ◽  
2020 ◽  
Vol 10 (3) ◽  
pp. e034257
Author(s):  
Jonas Sanberg Ljungdalh ◽  
Katrine Hass Rubin ◽  
Jesper Durup ◽  
Kim Christian Houlind
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Patient Satisfaction ◽  
Retrospective Cohort Study ◽  
Reflux Disease ◽  
Retrospective Cohort ◽  
Patient Reported

IntroductionLaparoscopic anti-reflux surgery is standard of care in surgical treatment of gastro-oesophageal reflux disease and is not without risks of adverse effects, including disruption of the fundoplication and postfundoplication dysphagia, in some cases leading to reoperation. Non-surgical factors such as pre-existing anxiety or depression influence postoperative satisfaction and symptom relief. Previous studies have focused on a short-term follow-up or only certain aspects of disease, such as reoperation or postoperative quality of life. The aim of this study is to evaluate long-term patient-satisfaction and durability of laparoscopic anti-reflux surgery in a large Danish cohort using a comprehensive multimodal follow-up, and to develop a clinically applicable scoring system usable in selecting patients for anti-reflux surgery.Methods and analysisThe study is a retrospective cohort study utilising data from patient records and follow-up with patient-reported quality of life as well as registry-based data. The study population consists of all adult patients having undergone laparoscopic anti-reflux surgery at The Department of Surgery, Kolding Hospital, a part of Lillebaelt Hospital Denmark in an 11-year period. From electronic records; patient characteristics, preoperative endoscopic findings, reflux disease characteristics and details on type of surgery, will be identified. Disease-specific quality of life and dysphagia will be collected from a patient-reported follow-up. From Danish national registries, data on comorbidity, reoperative surgery, use of pharmacological anti-reflux treatment, mortality and socioeconomic factors will be included. Primary outcome of this study is treatment success at follow-up.Ethics and disseminationStudy approval has been obtained from The Danish Patient Safety Agency, The Danish Health Data Authority and Statistics Denmark, complying to Danish and EU legislation. Inclusion in the study will require informed consent from participating subjects. The results of the study will be published in peer-reviewed medical journals regardless of whether these are positive, negative or inconclusive.Trial registration numberClinicaltrials.gov (NCT03959020).

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.

scholarly journals Gingivitis influences oral health-related quality of life in adolescents: findings from a cohort study

2020 ◽  
Vol 23 ◽  
Author(s):  
Fernanda Ruffo Ortiz ◽  
Camila Silveira Sfreddo ◽  
Ana Gabriela Maieron Coradini ◽  
Maria Laura Braccini Fagundes ◽  
Thiago Machado Ardenghi
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Oral Health ◽  
Health Related Quality ◽  
Periodontal Index ◽  
Related Quality ◽  
Health Related ◽  
The Impact

ABSTRACT: Introduction: Oral health-related quality of life (OHRQoL) is affected by different clinical conditions. The aim of this study was to evaluate the impact of gingivitis on OHRQoL in adolescents. Methodology: This cohort study consisted of a random sample of 1,134 schoolchildren enrolled during 2012, in Santa Maria, Brazil. After two years, 743 adolescents were follow-up (response rate: 65.5%). Clinical, socioeconomic and OHRQoL data were collected. OHRQoL was assessed by the short Brazilian version of the Child Perceptions Questionnaire 11-14 (CPQ11-14), and gingival bleeding through Community Periodontal Index. Gingivitis was considered with the presence of 15% or more bleeding sites. Poisson regression models were used to evaluate the association between gingivitis and overall and domain-specific CPQ11-14 scores. Prevalence of gingivitis at baseline was considered the main predictor for the OHRQoL at follow-up. Results: Gingivitis at baseline was associated with higher overall CPQ 11-14 score (RR = 1.07; 95%CI 1.01 - 1.14), and emotional well-being (RR = 1.17; 95%CI 1.04 - 1.31), independently of other oral conditions and socioeconomic variables. Conclusions: The findings indicate that gingivitis negatively impacts the adolescents’ OHRQoL. Moreover, gender, maternal schooling and household income were also associated with OHRQoL.

scholarly journals Need for transition medicine in pediatric surgery – health related quality of life in adolescents and young adults with congenital malformations

2022 ◽  
Vol 0 (0) ◽  
Author(s):  
Marie Uecker ◽  
Benno Ure ◽  
Julia Hannah Quitmann ◽  
Jens Dingemann
Keyword(s):  
Quality Of Life ◽  
Congenital Malformations ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Surgical Conditions ◽  
The Impact

Abstract Survival rates of patients with visceral congenital malformations have increased considerably. However, long-term morbidity in these patients is high. In the last decades, these circumstances have led to a shift in goals of caretakers and researchers with a new focus on patients’ perspectives and long-term morbidity. Health-related quality of life (HrQoL) is the most commonly used patient-reported outcome measure to assess the impact of chronic symptoms on patients’ everyday lives. Most pediatric surgical conditions can cause a significantly decreased HrQoL in affected patients compared to the healthy population. In order to guarantee life-long care and to minimize the impact on HrQoL a regular interdisciplinary follow-up is obligatory. The period of transition from child-centered to adult-oriented medicine represents a critical phase in the long-term care of these complex patients. This scoping review aims to summarize relevant pediatric surgical conditions focusing on long-term-morbidity and HrQoL assessment in order to demonstrate the necessity for a well-structured and standardized transition for pediatric surgical patients.

Health-related quality of life for glioblastoma short and long-term survivors receiving treatment with TTfields.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 2055-2055
Author(s):  
Joshua David Palmer ◽  
Po-Ya Chuang ◽  
Gordon Chavez ◽  
Bruce CM Wang ◽  
Christina Proescholdt
Keyword(s):  
Quality Of Life ◽  
Self Care ◽  
Usual Activity ◽  
Five Dimensions ◽  
Patient Reported ◽  
The Impact ◽  
Eq Vas ◽  
Time Since Diagnosis

2055 Background: The aim of this study was to administer the first large-scale, international survey eliciting real-world patient-reported quality-of-life (QoL) for patients with newly diagnosed and long-term glioblastoma (GBM) currently receiving treatment with TTFields. Methods: A survey was designed and mailed to 2,815 patients actively using TTFields for treatment of GBM in the United States (US, n = 2,182) and Europe (EU, n = 633). The survey included 1) demographic information, 2) patient-reported clinical information and 3) EuroQol’s EQ-5D-5L and EQ visual analogue scale (EQ-VAS) surveys. Univariate and multivariate analyses were performed on five dimensions (mobility, self-care, usual activity, pain/discomfort, anxiety/depression) of the EQ-5D-5L and EQ-VAS to understand the impact of patient demographics and clinical characteristics on QOL. Results: A total of 1,106 patients were included (39.3% response rate) with 782 and 324 responses in the US and EU, respectively. The median time from diagnosis was 14 mos (range, 0-301 mos) and ≥24 mos in 28.4% of patients. Patients were mostly male (62.3%) with a mean age of 58.5 (SD = 12.5) and 69.3% had stable disease. Mean EQ-VAS was 68.2 for all patients and was significantly higher for those with > 15 months since diagnosis compared to < 15 months since diagnosis (p = 0.008). There were significantly fewer problems reported on self-care ( p = 0.04) and usual activity ( p = 0.007) in patients with a longer time since diagnosis in the univariate analysis. In the multivariate analysis, patients with a longer time since diagnosis reported significantly better EQ-VAS ( p = 0.04). The effect size in the multivariate analysis for time since diagnosis on EQ-VAS was higher in the progressed subgroup ( p = 0.17) compared to the broader sample (0.08). The EQ-VAS and all five dimensions including mobility, self-care, usual activity, pain/discomfort, and anxiety/depression were improved for stable patients compared to progressed patients in the univariate and multivariate analyses. However, when stratified by progression status, progressed patients with longer time from diagnosis had significantly fewer reported problems with mobility ( p = 0.04), self-care ( p = 0.004) and usual activity ( p = 0.008), and significantly better self-rated health status ( p = 0.02). Conclusions: GBM survivors receiving TTFields reported significantly improved health status over time since diagnosis. Long-term survival with TTFields does not have a detriment in patient reported quality of life, in fact with longer time from diagnosis QOL significantly improves. This is true for patients with stable and progressed disease. Future prospective clinical trials are needed to further study the impact of our treatment and tumor progression on patient QOL.

Chronic pain in multiple sclerosis: A10-year longitudinal study

2017 ◽  
Vol 16 (1) ◽  
pp. 198-203 ◽  
Author(s):  
Jamie Young ◽  
Bhasker Amatya ◽  
Mary P. Galea ◽  
Fary Khan
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Chronic Pain ◽  
Longitudinal Study ◽  
The Mean ◽  
The Impact ◽  
Over Time

AbstractBackground and purposePain is a common symptom associated with multiple sclerosis (MS), and has lasting effects on an individual’s functional capacity and quality of life. A wide range of prevalence rates of pain (between 23% and 90%)have been reported in MS and this is mainly due to the methodological differences amongst the studies such as variability in patient sources, method of sampling and the definition of pain used. Chronic pain in MS, defined as pain lasting for greater than 3–6 months, can have a significant impact on their biopsychosocial health, including negative impact on activities of daily living, relationships and social participation. The long-term course of MS-related pain and its impact in an Australian cohort over a 7-year period has been investigated earlier. The aim of this longitudinal study was to describe the impact of chronic pain, pain-related disability and carer burden in persons with MS over a 10-year period. The aim of this longitudinal study was to describe the impact of chronic pain, pain-related disability and carer burden in persons with MS over a 10-year period.MethodsThis was a prospective longitudinal study conducted at the Rehabilitation Department of Royal Melbourne Hospital (RMH), a tertiary referral hospital in Victoria and Australia. The source of participants was from the RMH MS database and contains detailed MS patient information including demographic data, diagnosis details (using McDonald’s criteria), pain characteristics. Structured face-face interviews and validated measures were used, which include the visual analogue scale (VAS); chronic pain grade (CPG); the assessment of quality of life (AQoL) and the carer strain index (CSI). The mean age of the participants (n = 70) was 55.3 years and majority (70%) were female.ResultsThe mean age of the participants (n = 70) was 55.3 years and majority (70%) were female. The findings show that over time (10 years), participants report having greater bilateral bodily pain and greater description of pain as ‘worse as it could be’. Pain types were similar to 7-years follow-up but remained higher than baseline. There was a significant deterioration in quality of life in those with more severe CPG over time. Almost half of the participants 31 (44%) required care either from a private carer, institution or from a family member. Although fear of taking medications and side effects were common barriers to treatment for pain, there was an increase in the use of pharmacological treatment over time and an increase in the use of healthcare services, mainly neurologists and general practitioners.ConclusionsThe pain measures reported by the participants were similar to those at the 7-year follow-up except there was a greater representation of bilateral pain locations (limb, trunk and facial pain) compared to baseline and 7-year follow-up. At 10-year follow-up, more participants used medications compared tc 7-year follow-up and there was an increase in the use of health professionals at the 10-year follow-up At the 10-year follow up QoL of the participants deteriorated significantly and more participants had progressed to higher CPGIII and CPGIV. This study demonstrates that chronic pain is a significant issue over time in MS, with clinical and health implications, impact on quality of life, disability and healthcare utilization.ImplicationsGreater awareness of chronic pain in pwMS, cognitive classifications and an interdisciplinary approach is required to improve long-term patient outcomes and well-being.Crown Copyright © 2017 Published by Elsevier B.V. on behalf of Scandinavian Association for the Study of Pain. All rights reserved.

scholarly journals Assessment of patient-reported outcomes after polytrauma: protocol for a systematic review

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e017571 ◽  
Author(s):  
Irmela Gnass ◽  
Michaela Ritschel ◽  
Silke Andrich ◽  
Silke Kuske ◽  
Kai Moschinski ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Activities Of Daily Living ◽  
Daily Living ◽  
Patient Reported Outcomes ◽  
Short Term ◽  
Patient Reported

IntroductionSurvivors of polytrauma experience long-term and short-term burden that influences their lives. The patients’ view of relevant short-term and long-term outcomes should be captured in instruments that measure quality of life and other patient-reported outcomes (PROs) after a polytrauma. The aim of this systematic review is to (1) collect instruments that assess PROs (quality of life, social participation and activities of daily living) during follow-up after polytrauma, (2) describe the instruments’ application (eg, duration of period of follow-up) and (3) investigate other relevant PROs that are also assessed in the included studies (pain, depression, anxiety and cognitive function).Methods and analysisThe systematic review protocol is developed in line with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement. MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Cochrane Central Register of Controlled Trials and the trials registers ClinicalTrials.gov and WHO International Clinical Trials Registry Platform will be searched. Keywords, for example, ‘polytrauma’, ‘multiple trauma’, ‘quality of life’, ‘activities of daily living’ or ‘pain’ will be used. Publications published between January 2005 and the most recent date (currently: August 2016) will be included. In order to present the latest possible results, an update of the search is conducted before publication. The data extraction and a content analysis will be carried out systematically. A critical appraisal will be performed.Ethics and disseminationFormal ethical approval is not required as primary data will not be collected. The results will be published in a peer-reviewed publication.PROSPERO registration numberCRD42017060825.

Patient-Reported Outcome Measures to Inform Care of People With Dementia—A Systematic Scoping Review

2020 ◽  
Author(s):  
Darshini R Ayton ◽  
Madeleine L Gardam ◽  
Elizabeth K Pritchard ◽  
Rasa Ruseckaite ◽  
Joanne Ryan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Scoping Review ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
System Level ◽  
Patient’S Perspective ◽  
Patient Reported ◽  
The Impact

Abstract Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

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