Psychosocial outcomes 3 years after facial transplantation of a blind patient

2016 ◽  
Vol 33 (S1) ◽  
pp. S392-S392 ◽  
Author(s):  
G. Lemmens ◽  
H. Hendrickx ◽  
C. Poppe ◽  
N. Roche ◽  
P. Peeters ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Psychosocial Outcomes ◽  
Dyadic Adjustment ◽  
Reliable Change Index ◽  
Facial Transplantation ◽  
The Impact

BackgroundTo date, psychosocial outcomes after facial transplantation are promising although long-term consequences, outcome of blind patients and the impact on family members are less well investigated. The aim of this study was to examine the long-term psychosocial of a blind patient and his partner 2 and 3 years after facial transplantation.MethodsDepressive and anxiety symptoms, hopelessness, coping, resilience, illness cognitions, marital support, dyadic adjustment, family functioning and quality of life of the patient and the partner were assessed before and 2 and 3 years after transplantation. Reliable change index (RCI) was further calculated to evaluate the magnitude of change.ResultsMost psychological, marital and family scores of both the patient and the partner remained within a normative and healthy range at follow-up. Resilience (RCI: 2.5 & 3.4 respectively), affective responsiveness (RCI: −4.1 & −3.2 respectively), physical quality of life (RCI: 8.7 & 7.2 respectively) and helplessness (RCI: −2.2 & −2.9 respectively) of the patient improved at 2 and 3 years follow-up. Further, dyadic cohesion (RCI: 2.4) of the patient improved at 2 years whereas marital depth (RCI: −2.0) of the partner decreased at 3 years.ConclusionsThe results of this study point to positive long-term psychosocial outcomes of a blind patient and his partner after facial transplantation. Further, they may underscore the importance of patient selection, social support and involvement of family members in treatment.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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.

A pilot examination of the impact of cancer patients' fatigue on their spousal caregivers

2005 ◽  
Vol 3 (4) ◽  
pp. 273-279 ◽  
Author(s):  
STEVEN D. PASSIK ◽  
KENNETH L. KIRSH
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Dyadic Adjustment ◽  
Spousal Caregivers ◽  
Caregiver Strain ◽  
Activity Levels ◽  
Small Pilot Study ◽  
The Impact

Objective: In this pilot project we examined the quality of life of spouses of cancer patients who had significant fatigue.Methods: We assessed both the spouses of cancer patients and the patients who presented with chemotherapy-induced fatigue and anemia. Study endpoints included the impact that cancer patients' fatigue had on their spouses' quality of life, including their own levels of fatigue, depressive symptoms, activity levels, work absenteeism, and marital adjustment. We examined the extent to which changes in patients' fatigue from baseline to one month follow-up were associated with changes in spouses' quality of life indices.Results: 25 couples completed the study. Seven (28%) spousal caregivers reported handling fewer responsibilities at work, 8 (32%) had reduced their work hours, and 8 (32%) felt that they were less effective overall at work. Spousal caregivers also missed a significant amount of time at work during the month long study, missing an average of 2.7 (SD = 2.95) days, with an additional 1.29 (SD = 2.97) sick days and 1.76 (SD = 2.63) vacation days during that time. Spouses reporting greater levels of caregiver strain were more likely to have increased fatigue at baseline (F1,23 = 8.11, p < .01), and worse dyadic adjustment at both time points (baseline: F1,23 = 7.80, p < .01; follow-up: F1,21 = 9.24, p < .01). Also, those with more caregiver strain were less likely to engage in social activity at baseline (F1,23 = 6.11, p < .05) and more likely to engage in less work by the one month follow-up (F1,20 = 8.36, p < .01).Significance of results: Spouses who were identified as having elevated burden experienced more personal fatigue, had worse dyadic adjustment, reported poor energy levels, and tended to engage in fewer work and social activities; the impact of patient's fatigue level on these parameters was highly variable in this small pilot study.

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.  

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 The impact of bilateral endoscopic inferior turbinoplasty with or without adenoidectomy on the quality of life of children: a retrospective case series study

2019 ◽  
Vol 48 (1) ◽  
Author(s):  
Ahmed Mourad ◽  
Hussein Jaffal ◽  
Ismaeel El-Hakim ◽  
Hamdy El-Hakim
Keyword(s):  
Quality Of Life ◽  
Case Series ◽  
Retrospective Case ◽  
Retrospective Case Series ◽  
Case Series Study ◽  
The Impact ◽  
Series Study

Abstract Background Inferior turbinoplasty (IT) and adenoidectomy (Ad) are frequently resorted to in children with chronic rhinitis (CR) refractory to medical therapy. The aim of this study is to document the long-term improvement in quality of life (QOL) in children with CR following endoscopic IT with or without Ad. Methods A retrospective case series study was conducted. We searched a prospectively kept surgical database for children ≤18 years old who had CR who underwent endoscopic IT with or without Ad between 2009 and 2016 at a tertiary care children’s center. Patients with sinonasal pathologies other than CR, had craniofacial syndromes or dysmorphism and had other sinonasal procedures or trauma were excluded. Collected data included demographics, secondary diagnoses, duration of follow-up, and complications of procedures. The Glasgow Children’s Benefit Inventory (GCBI) was administered by phone to assess QOL improvement. Results One hundred sixty-five eligible subjects were identified. Eighty-nine subjects met the inclusion criteria. Data was collected for the 60 subjects that were reached. Forty-two patients had IT only while 18 had IT and Ad. The mean age was 10.7 ± 2.7 years, with 31 males and 29 females. The median duration of follow-up (25th, 75th percentile) was 38.1 months (24.6, 55.8). The median GCBI score (25th, 75th percentile) was 22.9 (6.3, 39.6) revealing an overall positive benefit in all domains. There was only one complication. Conclusions This study validates prior findings regarding improvement of QOL and safety of IT with or without Ad for children with CR and indicates it is maintained in the long term.

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.

NCOG-12. COGNITIVE FUNCTION (CF) & QUALITY OF LIFE (QOL) IN PATIENTS TREATED WITH PROCARBAZINE, CCNU, & VINCRISTINE (PCV) + RADIOTHERAPY (RT) VS. RT FOR ANAPLASTIC OLIGODENDROGLIOMA (AO) ON NRG RTOG TRIAL 9402

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi154-vi154
Author(s):  
Laura Donovan ◽  
Minhee Won ◽  
J Gregory Cairncross ◽  
Fabio Iwamoto ◽  
Jan Buckner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Treatment Groups ◽  
Younger Age ◽  
Baseline Characteristics ◽  
The Impact ◽  
Over Time ◽  
Time Point

Abstract BACKGROUND PCV+RT substantially prolongs survival in AO patients, but long-term CF and QOL implications are unclear. We compared CF and QOL by treatment arm in RTOG 9402 participants and evaluated the impact that baseline characteristics had on CF, QOL, and survival. METHODS CF and QOL were evaluated using the Mini Mental State Exam (MMSE) and Brain-Quality of Life (B-QOL) scale at baseline and annually. Scores were analyzed between treatment arms at each time point for patients with ≥ 10 years of follow-up data. Shared parameter models evaluated MMSE and B-QOL scores and survival for all patients. RESULTS 42/148 (28.4%) participants in PCV+RT and 20/143 (14%) in RT alone arms survived ≥ 10 years. 35/42 and 39/42 (PCV+RT) and 18/20 and 17/20 (RT) participants completed baseline B-QOL and MMSE assessments, respectively. B-QOL scores did not differ between treatment groups at any time-point. Among 16 patients (10 PCV+RT, 6 RT) who completed year 10 MMSE evaluations, mean MMSE score at 10 years was higher in the RT arm (29.83 [95% CI 22.1, 30.0] vs. 26.50 [95% CI 29.4, 30.0], P= 0.04). Change in MMSE and B-QOL scores from baseline did not differ significantly between treatment groups at any time. In shared parameter models including all patients with baseline assessments, MMSE and B-QOL scores decreased over time (MMSE P= 0.0189, B-QOL P= 0.0005), but this did not differ by treatment group (MMSE P= 0.5727, B-QOL P= 0.3592). Younger age and higher KPS predicted better scores (MMSE P &lt; 0.0001, P = 0.0002; B-QOL P = 0.0043, P = 0.0007). PCV+RT predicted better survival in both models. CONCLUSIONS PCV+RT improves survival in AO. Shared parameter models show decrease in MMSE and B-QOL over time. However, relative to RT alone, the addition of PCV did not impact change in CF and QOL over time.

The Impact of Severe Sepsis on Health-Related Quality of Life: A Long-Term Follow-Up Study

2008 ◽  
Vol 107 (6) ◽  
pp. 1957-1964 ◽  
Author(s):  
José G. M. Hofhuis ◽  
Peter E. Spronk ◽  
Henk F. van Stel ◽  
Augustinus J. P. Schrijvers ◽  
Johannes H. Rommes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Follow Up Study ◽  
Related Quality ◽  
Long Term Follow Up ◽  
Health Related ◽  
The Impact

scholarly journals Longitudinal Assessment of Health and Quality of Life of COVID-19 Patients Requiring Intensive Care—An Observational Study

2021 ◽  
Vol 10 (23) ◽  
pp. 5469
Author(s):  
Johanna Erber ◽  
Johannes R. Wießner ◽  
Gregor S. Zimmermann ◽  
Petra Barthel ◽  
Egon Burian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Pulmonary Function ◽  
Function Parameter ◽  
Diffusion Capacity ◽  
The Impact ◽  
Over Time

Long-term health consequences in survivors of severe COVID-19 remain unclear. Eighteen COVID-19 patients admitted to the intensive care unit at the University Hospital Rechts der Isar, Munich, Germany, between 14 March and 23 June 2020, were prospectively followed-up at a median of 36, 75.5, 122 and 222 days after discharge. The health-related quality of life (HrQoL) (36-item Short Form Health Survey and St. George’s Respiratory Questionnaire, SGRQ), cardiopulmonary function, laboratory parameters and chest imaging were assessed longitudinally. The HrQoL assessment revealed a reduced physical functioning, as well as increased SGRQ impact and symptoms scores that all improved over time but remained markedly impaired compared to the reference groups. The median radiological severity scores significantly declined; persistent abnormalities were found in 33.3% of the patients on follow-up. A reduced diffusion capacity was the most common abnormal pulmonary function parameter. The length of hospitalization correlated with role limitations due to physical problems, the SGRQ symptom and the impact score. In conclusion, in survivors of severe COVID-19, the pulmonary function and symptoms improve over time, but impairments in their physical function and diffusion capacity can persist over months. Longer follow-up studies with larger cohorts will be necessary to comprehensively characterize long-term sequelae upon severe COVID-19 and to identify patients at risk.

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