scholarly journals Cognitive Rehabilitation in Patients with Gliomas and Other Brain Tumors: State of the Art

2016 ◽  
Vol 2016 ◽  
pp. 1-11 ◽  
Author(s):  
E. Bergo ◽  
G. Lombardi ◽  
A. Pambuku ◽  
A. Della Puppa ◽  
L. Bellu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Brain Tumors ◽  
Cognitive Deficits ◽  
Cognitive Rehabilitation ◽  
State Of The Art ◽  
Daily Life ◽  
The Past ◽  
Disease Prognosis

Disease prognosis is very poor in patients with brain tumors. Cognitive deficits due to disease or due to its treatment have an important weight on the quality of life of patients and caregivers. Studies often take into account quality of life as a fundamental element in the management of disease and interventions have been developed for cognitive rehabilitation of neuropsychological deficits with the aim of improving the quality of life and daily-life autonomy of patients. In this literature review, we will consider the published studies of cognitive rehabilitation over the past 20 years.

scholarly journals P116 Development of a new patient-reported outcome measure for patients with complex cryptoglandular fistulas

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S208-S209
Author(s):  
J McCurdy ◽  
P Crooks ◽  
C Gwaltney ◽  
R Krupnick ◽  
K A Cadogan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Conceptual Model ◽  
Rating Scale ◽  
Daily Life ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Item Pool ◽  
Patient Reported

Abstract Background Complex cryptoglandular fistulas (CCF) arise from infected anal glands and are often associated with substantial morbidity and healthcare utilization. Standarized patient-reported outcome measures (PROMs) for CCF are lacking. Thus, we aimed to develop a disease-specific PROM to assess the burden of symptoms and their impact on daily life in patients with CCF. Methods To develop a conceptual model, a targeted literature review was conducted to identify symptoms and impacts on daily life associated with CCF. Existing PROMs relating to anal fistulas were also sought. Semi-structured interviews with colorectal surgeons (n=5) assessed clinical perspectives on patient experience of CCF. A draft item pool was developed based on the refined conceptual model and using the Quality of Life in Patients with Anal Fistula Questionnaire as a reference. The tool was refined through concept elicitation interviews on the symptoms and impacts of CCF, and cognitive debriefing on the interpretation, understanding and response to each item. Interviews were conducted until concept saturation was achieved and patient feedback suggested no further refinements were required. Results The literature review identified discharge, pain, faecal incontinence and bleeding as the most prevalent symptoms, and embarrassment as the most prevalent impact on daily life. Results from surgeon interviews were then used to revise the initial conceptual model. Twenty US adults (60% female; mean age, 49 years) with clinically confirmed CCF participated in interviews (four waves of n=5). Patients identified 10 salient symptoms and 11 salient impacts on daily life (salient defined as mention by ≥50% of patients and mean disturbance rating ≥5 on a 10-point scale). The final conceptual model included the main symptoms and treatment-related effects, and impacts on daily life. The draft item pool was refined, resulting in a final PROM consisting of 14 items (covering frequency and severity) relating to symptom domains – discharge, incontinence, pain, irritation, odour, abscess – and 6 items relating to health-related quality of life domains – functional, physical, psychological, social health. The PROM features a 7-day recall period, with responses mostly given on a 5-point verbal rating scale. Cognitive debriefing confirmed that the PROM was clear, easy to understand and relevant to patients’ experiences. Conclusion The 20-item CCF questionnaire (CCFQ-20) is a new PROM that has been developed and tested for content validity, following expert guidance and regulatory best practices. It addresses a comprehensive set of salient symptoms and impacts experienced by patients with CCF. Psychometric testing is required to fully evaluate this PROM. Sponsor: Takeda Pharmaceuticals USA, Inc.

How stoma formation impacts sexuality in adults: a literature review

2021 ◽  
Vol 19 (1) ◽  
pp. 42-48
Author(s):  
Megan Betts
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Health Professionals ◽  
Literature Search ◽  
Reference Lists ◽  
Sexual Relationships ◽  
The Past ◽  
Healthcare Settings ◽  
Stoma Formation

Aims: Stoma formation surgery can affect people socially, psychologically and physically. This literature review aims to explore the factors that affect an adult ostomate's sexuality after stoma formation. Methods: The literature search was conducted on three electronic databases: CINAHL, PsychINFO and Medline complete. The search was limited to peer-reviewed studies published in the past 7 years. The reference lists of the identified literature were also searched. Findings: Stoma formation was found to greatly impact sexuality in adults. The main themes identified were: hygiene; satisfaction and desire; self-perception; companionship and sexual relationships; and physical considerations. It was found that people were dissatisfied with the information provided by health professionals about sexuality. Conclusions: Stoma formation was commonly found to negatively affect adults' sexuality. To improve the quality of life of ostomates, these issues need to be thoroughly addressed in healthcare settings.

scholarly journals FitPi: Wearable IoT solution for a daily smart life

2020 ◽  
Vol 10 (1) ◽  
pp. 67-79
Author(s):  
Sabin Pruna ◽  
Anca Vasilescu
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
State Of The Art ◽  
Voice Recognition ◽  
Vital Signs ◽  
Proof Of Concept ◽  
The Public ◽  
The Past ◽  
Concept Evaluation

AbstractThe extensive implementation of Internet of Things (IoT) solutions and its wide popularity to the public over the past decade enabled emergent applications that provide sophisticated, proactive health care solutions that can improve the quality of life of individuals. This work proposes an IoT architecture and implements a prototype solution that allows its users to improve their physical activity by collecting vital signs using wearables and other environmental and habitual information in order to monitor their activity and propose behaviors in a smart way that will allow them to achieve their preset goals. The focus is on the increased usability of the system employing refined solutions like voice recognition and smart visualization to enable its seamless use while offering an interoperable architecture that will enhance its flexibility. The prototype implementation offers a proof of concept evaluation of the proposed system, applying state of the art technologies and using existing hardware and popular gadgets..

scholarly journals Cognitive Rehabilitation in Patients With Gliomas: A Randomized, Controlled Trial

2009 ◽  
Vol 27 (22) ◽  
pp. 3712-3722 ◽  
Author(s):  
Karin Gehring ◽  
Margriet M. Sitskoorn ◽  
Chad M. Gundy ◽  
Sietske A.M. Sikkes ◽  
Martin Klein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functioning ◽  
Cognitive Deficits ◽  
Cognitive Rehabilitation ◽  
Controlled Trial ◽  
Self Report ◽  
Control Group ◽  
Randomized Controlled

Purpose Patients with gliomas often experience cognitive deficits, including problems with attention and memory. This randomized, controlled trial evaluated the effects of a multifaceted cognitive rehabilitation program (CRP) on cognitive functioning and selected quality-of-life domains in patients with gliomas. Patients and Methods One hundred forty adult patients with low-grade and anaplastic gliomas, favorable prognostic factors, and both subjective cognitive symptoms and objective cognitive deficits were recruited from 11 hospitals in the Netherlands. Patients were randomly assigned to an intervention group or to a waiting-list control group. The intervention incorporated both computer-based attention retraining and compensatory skills training of attention, memory, and executive functioning. Participants completed a battery of neuropsychological (NP) tests and self-report questionnaires on cognitive functioning, fatigue, mental health–related quality of life, and community integration at baseline, after completion of the CRP, and at 6-month follow-up. Results At the immediate post-treatment evaluation, statistically significant intervention effects were observed for measures of subjective cognitive functioning and its perceived burden but not for the objective NP outcomes or for any of the other self-report measures. At the 6-month follow-up, the CRP group performed significantly better than the control group on NP tests of attention and verbal memory and reported less mental fatigue. Group differences in other subjective outcomes were not significant at 6 months. Conclusion The CRP has a salutary effect on short-term cognitive complaints and on longer-term cognitive performance and mental fatigue. Additional research is needed to identify which elements of the intervention are most effective.

scholarly journals Abandoning questionnaires

2021 ◽  
pp. 53-64
Author(s):  
Anna Mann
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Life Questionnaire ◽  
Clinical Practices ◽  
Dialysis Unit ◽  
The Past ◽  
Care Approach ◽  
Good Provision ◽  
Specific Care

Care-concepts have proliferated over the past couple of years, and have been used tostudy all kinds of practices, situations and sites. This begs the question: What is gained bystudying practices in terms of care? The paper addresses this question by using a specificcare-approach, which is the study of daily life dealings (Mol et al., 2010). It mobilises thisapproach to investigate a particular object, namely a good provision of haemodialysistreatment in nephrology practice. It does so in a given place, a dialysis unit in Austria.Based on ethnographic fieldwork with a focus on how patients' quality of life was improved,the paper reports how, in this dialysis unit, a quality of life questionnaire was introducedbut soon abandoned. It first analyses how the prominent ideal that quality of life is to bemeasured with a questionnaire arrived in the goings-on in the unit. It then teases out howconnecting and disconnecting patients to dialysis machines, and seeing them during thedaily round enacted knowing, improving and quality of life in other ways than the prominentpractice. It argues that questionnaires, forms, protocols, and the prominent practice theyare part of may not only be made to fit into daily clinical practices or that daily life dealingsare other to prominent practices. Daily clinical practices may also be the basis upon whichquestionnaires, forms, protocols, and the prominent practice they are part of are evaluated,abandoned, and forgotten. Recommending further investigation into the conditions ofpossibilities for alternative enactments of a good provision of health care to thrive, thepaper concludes that what has been gained by using this specific care-approach to studythis particular object are insights into daily life practices that have so far been othered innephrology practice and STS.

scholarly journals THE DIAGNOSIS AND ASSESSMENT OF THE QUALITY OF LIFE IN TINNITUS PATIENTS. A LITERATURE REVIEW

2022 ◽  
Vol 32 (1) ◽  
pp. 35
Author(s):  
Belanny Dwi Desihartati ◽  
Nyilo Purnami
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Physical Examination ◽  
Daily Life ◽  
Patient Assessment ◽  
Functional Index ◽  
Tinnitus Handicap Inventory ◽  
Primary Function ◽  
Frequency Of Use

Highlight:1. Assessment of the patient’s quality of life is used to establish the diagnosis of tinnitus.2. The assessment is performed using several types of questionnaires: Tinnitus Handicap Inventory (THI), Tinnitus and Hearing Survey (THS), Tinnitus Functional Index (TFI) and Tinnitus Primary Function Questionnaire (TPFQ). 3. THI is the questionnaire that has been translated into Indonesian so that it is easier to use in Indonesia.Background: Tinnitus is a symptom with many different causes that can interfere with daily life. The diagnosis of tinnitus can be carried out, starting by examining the history, physical examination, and audiology, and assessing the quality of life of the patient. Assessment of the patient’s quality of life and the severity of tinnitus was carried out using a questionnaire. Objective: This study aimed to explain the frequency of use of several questionnaires to assess the quality of life of patients with tinnitus, including Tinnitus Handicap Inventory (THI), Tinnitus and Hearing Survey (THS), Tinnitus Functional Index (TFI) and Tinnitus Primary Function Questionnaire (TPFQ). Discussion: The use of THI as a research tool has been recommended for assessing the severity of tinnitus functional, emotional, and catastrophic responses. THS is used as a screening instrument to evaluate tinnitus complaints because of a hearing problem and how frequently it happens. TFI was used for identifying the functional impact on tinnitus patients, to evaluate how tinnitus affects a person’s life, while TPFQ was applied as it is a new questionnaire designed specifically for this objective. Conclusion: Many questionnaires can be used as an assessment of the quality of life of patients with tinnitus. Each questionnaire can be used and has its advantages. THI is a questionnaire that has been translated into Indonesian so that it is easier to assess.

Exercise Capacity in Chronic Heart Failure

2012 ◽  
Vol 9 (1) ◽  
pp. 57-60 ◽  
Author(s):  
Gina G Mentzer ◽  
Alex J Auseon
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Exercise Training ◽  
Exercise Capacity ◽  
Positive Impact ◽  
Pharmacologic Therapy ◽  
The Past ◽  
Diagnosis And Prognosis ◽  
Future Therapy

Heart failure (HF) affects more than 5 million people and has an increasing incidence and cost burden. Patients note symptoms of dyspnea and fatigue that result in a decreased quality of life, which has not drastically improved over the past decades despite advances in therapies. The assessment of exercise capacity can provide information regarding patient diagnosis and prognosis, while doubling as a potential future therapy. clinically, there is acceptance that exercise is safe in hf and can have a positive impact on morbidity and quality of life, although evidence for improvement in mortality is still lacking. specific prescriptions for exercise training have not been developed because many variables and confounding factors have prevented research trials from demonstrating an ideal regimen. Physicians are becoming more aware of the indices and goals for hf patients in exercise testing and therapy to provide comprehensive cardiac care. it is further postulated that a combination of exercise training and pharmacologic therapy may eventually provide the most benefits to those suffering from hf.

Interrater reliability of a method to assess hypothalamic involvement in pediatric adamantinomatous craniopharyngioma

2020 ◽  
Vol 25 (1) ◽  
pp. 37-42 ◽  
Author(s):  
Ros Whelan ◽  
Eric Prince ◽  
David M. Mirsky ◽  
Robert Naftel ◽  
Aashim Bhatia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumors ◽  
Interrater Reliability ◽  
Statistical Evaluation ◽  
Grading System ◽  
Reliability Study ◽  
Postoperative Mri ◽  
Mri Scans ◽  
Adamantinomatous Craniopharyngioma

OBJECTIVEPediatric adamantinomatous craniopharyngiomas (ACPs) are histologically benign brain tumors that confer significant neuroendocrine morbidity. Previous studies have demonstrated that injury to the hypothalamus is associated with worsened quality of life and a shorter lifespan. This insight helps many surgeons define the goals of surgery for patients with ACP. Puget and colleagues proposed a 3-tiered preoperative and postoperative grading system based on the degree of hypothalamic involvement identified on MRI. In a prospective cohort from their institution, the authors found that use of the system to guide operative goals was associated with decreased morbidity. To date, however, the Puget system has not been externally validated. Here, the authors present an interrater reliability study that assesses the generalizability of this system for surgeons planning initial operative intervention for children with craniopharyngiomas.METHODSA panel of 6 experts, consisting of pediatric neurosurgeons and pediatric neuroradiologists, graded 30 preoperative and postoperative MRI scans according to the Puget system. Interrater reliability was calculated using Fleiss’ κ and Krippendorff’s α statistics.RESULTSInterrater reliability in the preoperative context demonstrated moderate agreement (κ = 0.50, α = 0.51). Interrater reliability in the postoperative context was 0.27 for both methods of statistical evaluation.CONCLUSIONSInterrater reliability for the system as defined is moderate. Slight refinements of the Puget MRI grading system, such as collapsing the 3 grades into 2, may improve its reliability, making the system more generalizable.

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