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1.
Quality of life in people living with HIV-associated neurocognitive disorder: A scoping review study.
Alford, K, Daley, S, Banerjee, S, Vera, JH
PloS one. 2021;(5):e0251944
Abstract
Quality of life (QoL) is recognized as an essential end point in the disease management of chronic conditions such as HIV with calls to include good QoL as a 'fourth 90' in the 90-90-90 testing and treatment targets introduced by World Health Organization in 2016. Cognitive impairments impact a broad spectrum of experiences and are a common issue effecting people living with HIV (PLWH). Despite this, few studies have examined QoL in PLWH who also have a cognitive disorder. This study aimed to synthesize and describe what is known about QoL in those living with HIV-associated neurocognitive disorders (HAND). A scoping review of peer-reviewed literature was conducted to identify how QoL has been investigated and measured in PLWH with HAND, and how PLWH with HAND report and describe their QoL. We searched PsychInfo, Medline, Scopus, and Web of Science along with hand-searching reference lists from relevant studies found. Included studies were those published in English after 1st January 2003 which included PLWH with cognitive impairment not due to other pre-existing conditions. Fifteen articles met criteria for inclusion. Two studies measured QoL as a primary aim, with others including QoL assessment as part of a broader battery of outcomes. The MOS-HIV and SF-36 were the most commonly used measures of overall QoL, with findings generally suggestive of poorer overall QoL in PLWH with HAND, compared to PLWH without cognitive impairment. Studies which examined dimensions of QoL focused exclusively on functionality, level of independence, and psychological QoL domains. There is a considerable dearth of research examining QoL in PLWH with HAND. The initiatives which advocate for healthy aging and improved QoL in PLWH must be extended to include and understand the experiences those also living with cognitive impairment. Research is needed to understand the broad experiential impacts of living with these two complex, chronic conditions, to ensure interventions are meaningful to patients and potential benefits are not missed.
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Enhancing Mood, Cognition, and Quality of Life in Pediatric Multiple Sclerosis.
Fernandez-Carbonell, C, Charvet, LE, Krupp, LB
Paediatric drugs. 2021;(4):317-329
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Abstract
Pediatric-onset multiple sclerosis (POMS), representing approximately 5% of all MS cases, affects the central nervous system during its ongoing development. POMS is most commonly diagnosed during adolescence but can occur in younger children as well. For pediatric patients with MS, it is critical to manage the full impact of the disease and monitor for any effects on school and social functioning. Disease management includes not only disease-modifying therapies but also strategies to optimize wellbeing. We review the interventions with the highest evidence of ability to improve the disease course and quality of life in POMS. High levels of vitamin D and a diet low in saturated fat are associated with lower relapse rates. Exercise ameliorates fatigue and sleep. Behavioral strategies for sleep hygiene and mood regulation can also improve fatigue and perceived health. POMS management should be addressed holistically, including assessing overall symptom burden as well as the psychological and functional impact of the disease.
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3.
Impact of Hepatic Encephalopathy in Cirrhosis on Quality-of-Life Issues.
Montagnese, S, Bajaj, JS
Drugs. 2019;(Suppl 1):11-16
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Abstract
Hepatic encephalopathy (HE) has a major impact on health-related quality of life (HRQOL) in patients, which has clinical and psychosocial consequences. HRQOL in cirrhosis has been measured by generic and liver-specific instruments, with most studies indicating a negative impact of HE. HRQOL abnormalities span daily functioning, sleep-wake cycle changes, and the ability to work. Of these, sleep-wake cycle changes have a major effect on HRQOL, which remains challenging to treat. The personal effect of HRQOL is modulated by the presence of HE, the etiology of cirrhosis, and cognitive reserve. Patients with higher cognitive reserve are able to tolerate HE and its impact on HRQOL better than those with a poor cognitive reserve. The impact of HRQOL impairment is felt by patients (higher mortality and poor daily functioning), as well as by caregivers and families. Caregivers of patients with HE bear a major financial and psychological burden, which may affect their personal health and longevity.
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A Narrative Review of Lifestyle Factors Associated with Parkinson's Disease Risk and Progression.
Nag, N, Jelinek, GA
Neuro-degenerative diseases. 2019;(2):51-59
Abstract
Parkinson's disease is a complex slowly progressive neurodegenerative disorder with motor and non-motor symptoms affecting daily living. Despite effective symptomatic treatments, with various degrees of side effects, no disease-modifying therapeutic options presently exist. Symptoms progress, with an accumulating burden, reducing the quality of life and forming the impression that medications are no longer effective. Adopting positive lifestyle behaviours can empower patients, improve the quality of life, alleviate symptoms, and potentially slow disease progression. Lifestyle behaviours including nutrition, cognitive enrichment, physical activity, and stress management have beneficial effects on brain health and quality of life. While some evidence of an association of lifestyle with Parkinson's disease risk and progression exists, the sparse and often conflicting data make it difficult to provide clinical recommendations. Herein, we highlight studies showing promising associations between lifestyle and Parkinson's disease. Given the increasing aging of populations worldwide and the prevalence of neurological disorders, further research into self-management through adoption of positive lifestyle behaviours is clearly warranted to better enable individualized care.
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Pancreas Cancer-Associated Weight Loss.
Hendifar, AE, Petzel, MQB, Zimmers, TA, Denlinger, CS, Matrisian, LM, Picozzi, VJ, Rahib, L, ,
The oncologist. 2019;(5):691-701
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Abstract
Unintentional weight loss in patients with pancreatic cancer is highly prevalent and contributes to low therapeutic tolerance, reduced quality of life, and overall mortality. Weight loss in pancreatic cancer can be due to anorexia, malabsorption, and/or cachexia. Proper supportive care can stabilize or reverse weight loss in patients and improve outcomes. We review the literature on supportive care relevant to pancreatic cancer patients, and offer evidence-based recommendations that include expert nutritional assessment, counseling, supportive measures to ensure adequate caloric intake, pancreatic enzyme supplementation, nutritional supplement replacement, orexigenic agents, and exercise. Pancreatic Cancer Action Network-supported initiatives will spearhead the dissemination and adoption of these best supportive care practices. IMPLICATIONS FOR PRACTICE Weight loss in pancreatic cancer patients is endemic, as 85% of pancreatic cancer patients meet the classic definition of cancer cachexia. Despite its significant prevalence and associated morbidity, there is no established approach to this disease entity. It is believed that this is due to an important knowledge gap in understanding the underlying biology and lack of optimal treatment approaches. This article reviews the literature regarding pancreas cancer-associated weight loss and establishes a new framework from which to view this complex clinical problem. An improved approach and understanding will help educate clinicians, improve clinical care, and provide more clarity for future clinical investigation.
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A pragmatic approach to prevent post-traumatic osteoarthritis after sport or exercise-related joint injury.
Whittaker, JL, Roos, EM
Best practice & research. Clinical rheumatology. 2019;(1):158-171
Abstract
Lower extremity musculoskeletal injuries are common in sport and exercise, and associated with increased risk of obesity and post-traumatic osteoarthritis (PTOA). Unlike other forms of osteoarthritis, PTOA is common at a younger age and associated with more rapid progression, which may impact career choices, long-term general health and reduce quality of life. Individuals who suffer an activity-related joint injury and present with abnormal joint morphology, elevated adiposity, weak musculature, or become physically inactive are at increased risk of PTOA. Insufficient exercise therapy or incomplete rehabilitation, premature return-to-sport and re-injury, unrealistic expectations, or poor nutrition may further elevate this risk. Delay in surgical interventions in lieu of exercise therapy to optimize muscle strength and neuromuscular control while addressing fear of movement to guarantee resumption of physical activity, completeness of rehabilitation before return-to-sport, education that promotes realistic expectations and self-management, and nutritional counseling are the best approaches for delaying or preventing PTOA.
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Health-related quality of life across cancer cachexia stages.
Kasvis, P, Vigano, M, Vigano, A
Annals of palliative medicine. 2019;(1):33-42
Abstract
Cancer cachexia (CC) is common in advanced cancer and is accompanied by negative effects on health-related quality of life (HRQOL). However, methods to identify the impact of CC on HRQOL are limited. Single questionnaire items may provide insight on the effect of CC on HRQOL. Specifically, the use of "feeling of wellbeing" (FWB) on the Edmonton Symptom Assessment System (ESAS) questionnaire and the Distress Thermometer (DT) have been explored. Assessing how these two surrogate measures of HRQOL are impacted among CC stages and what drives these negative effects may allow for focused treatments. Five-hundred and twelve patients referred to a Cancer Rehabilitation Program completed the ESAS, with the question on FWB and the DT at baseline. Patients were separated into CC stages: non-cachexia (NC), pre-cachexia (PC), cachexia (C), refractory cachexia (RC). A mixed model ANOVA with post hoc Tukey adjustment was used to compare means of FWB and distress among the CC stages. To understand what was driving the differences between CC stages, a robust regression model was created with either distress or FWB as the outcome measure, dependent on the other measures in ESAS, age and sex. Finally, the use of cannabinoids in treating appetite loss was examined, as it has a detrimental effect on FWB; 54 patients underwent cannabinoid treatment for appetite loss within a community-based, physician-lead, medical cannabis clinic. A t-test to assess changes in ESAS appetite score after 3 months of cannabinoid treatment was examined. RC patients had a significantly poorer sense of wellbeing than the other cachexia stages (RC: 6.07±0.33). Significant differences in distress were identified between RC patients and those with NC and C, but not with PC (RC: 4.87±0.38, NC: 3.35±0.26, PC: 4.11±0.30, C: 3.60±0.28). FWB was negatively affected by worsening appetite in all CC stages except NC (PC: 0.19±0.08, P=0.022; C: 0.26±0.06, P<0.001; RC: 0.23±0.08, P=0.007). ESAS score for lack of appetite significantly improved between baseline (5.07±3.21) and follow-up (3.56±3.15, P=0.003) after cannabinoid treatment, with no significant difference in weight (baseline: 70.7±14.6 kg, 3-month follow-up: 71.0±14.8 kg). Future research should validate both multidimensional and single-item tools to measure HRQOL in patients at different stages of CC. Improvement of HRQOL via appetite stimulation, may be achieved through a multidisciplinary approach, which includes cannabinoid therapy.
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Use of modified diets to prevent aspiration in oropharyngeal dysphagia: is current practice justified?
O'Keeffe, ST
BMC geriatrics. 2018;(1):167
Abstract
BACKGROUND Although modifying diets, by thickening liquids and modifying the texture of foods, to reduce the risk of aspiration has become central to the current management of dysphagia, the effectiveness of this intervention has been questioned. This narrative review examines, and discusses possible reasons for, the apparent discrepancy between the widespread use of modified diets in current clinical practice and the limited evidence base regarding the benefits and risks of this approach. DISCUSSION There is no good evidence to date that thickening liquids reduces pneumonia in dysphagia and this intervention may be associated with reduced fluid intake. Texture-modified foods may contribute to undernutrition in those with dysphagia. Modified diets worsen the quality of life of those with dysphagia, and non-compliance is common. There is substantial variability in terminology and standards for modified diets, in the recommendations of individual therapists, and in the consistency of diets prepared by healthcare staff for consumption. Although use of modified diets might appear to have a rational pathophysiological basis in dysphagia, the relationship between aspiration and pneumonia is not clear-cut. Clinical experience may be a more important determinant of everyday practice than research evidence and patient preferences. There are situations in the management of dysphagia where common sense and the necessity of intervention will clearly outweigh any lack of evidence or when application of evidence-based principles can enable good decision making despite the absence of robust evidence. Nevertheless, there is a significant discrepancy between the paucity of the evidence base supporting use of modified diets and the beliefs and practices of practitioners. CONCLUSION The disconnect between the limited evidence base and the widespread use of modified diets suggests the need for more careful consideration as to when modified diets might be recommended to patients. Patients (or their representatives) have a choice whether or not to accept a modified diet and must receive adequate information, about the potential risks and impact on quality of life as well as the possible benefits, to make that choice. There is an urgent need for better quality evidence regarding this intervention.
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Lifestyle and fertility: the influence of stress and quality of life on female fertility.
Palomba, S, Daolio, J, Romeo, S, Battaglia, FA, Marci, R, La Sala, GB
Reproductive biology and endocrinology : RB&E. 2018;(1):113
Abstract
There is growing evidence that lifestyle choices account for the overall quality of health and life (QoL) reflecting many potential lifestyle risks widely associated with alterations of the reproductive function up to the infertility. This review aims to summarize in a critical fashion the current knowledge about the potential effects of stress and QoL on female reproductive function. A specific literature search up to August 2017 was performed in IBSS, SocINDEX, Institute for Scientific Information, PubMed, Web of Science and Google Scholar. Current review highlights a close relationship in women between stress, QoL and reproductive function, that this association is more likely reported in infertile rather than fertile women, and that a vicious circle makes them to have supported each other. However, a precise cause-effect relationship is still difficult to demonstrate due to conflicting results and the lack of objective measures/instruments of evaluation.
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Urinary incontinence in women.
Aoki, Y, Brown, HW, Brubaker, L, Cornu, JN, Daly, JO, Cartwright, R
Nature reviews. Disease primers. 2017;:17042
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Abstract
Urinary incontinence symptoms are highly prevalent among women, have a substantial effect on health-related quality of life and are associated with considerable personal and societal expenditure. Two main types are described: stress urinary incontinence, in which urine leaks in association with physical exertion, and urgency urinary incontinence, in which urine leaks in association with a sudden compelling desire to void. Women who experience both symptoms are considered as having mixed urinary incontinence. Research has revealed overlapping potential causes of incontinence, including dysfunction of the detrusor muscle or muscles of the pelvic floor, dysfunction of the neural controls of storage and voiding, and perturbation of the local environment within the bladder. A full diagnostic evaluation of urinary incontinence requires a medical history, physical examination, urinalysis, assessment of quality of life and, when initial treatments fail, invasive urodynamics. Interventions can include non-surgical options (such as lifestyle modifications, pelvic floor muscle training and drugs) and surgical options to support the urethra or increase bladder capacity. Future directions in research may increasingly target primary prevention through understanding of environmental and genetic risks for incontinence.