scholarly journals Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Carolyn E. Schwartz ◽  
Roland B. Stark ◽  
Bruce D. Rapkin
Keyword(s):  
Quality Of Life ◽  
Patient Experience ◽  
Secondary Analysis ◽  
Chronically Ill ◽  
Racial Groups ◽  
Wide Range ◽  
Education Levels ◽  
And Gender ◽  
Gender Groups

Abstract Background Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differences in a wide range of research contexts. The present work investigates patterns across diagnostic and demographic groupings to demonstrate how population-specific circumstances drive the structure of QOL appraisal. Methods This secondary analysis (N = 6448) utilized data from six patient groups: spine surgery, multiple sclerosis, heterogeneous chronically ill, heterogeneous cancer, bladder cancer, and human immunodeficiency virus (HIV). We explored patterns of inter-item correlation across patient samples, using items from the Standards of Comparison and Sampling of Experience subsections of the QOL Appraisal Profile v1 and v2. Similar matrices were compared by demographic characteristics. Results Patterns of inter-item correlations for Standards of Comparison items varied sharply across disease groups and racial groups while being similar across age, gender, and education levels. Inter-item correlation matrices for Sampling of Experience items revealed marked differences among disease groups and educational and racial categories but were similar across age and gender groups. Conclusions Appraisal parameters showed evidence of shared and unique aspects across samples and circumstances, findings which make sense in light of sample differences in health status and demographic influences. Tools to assess patient experience and meaning may be best understood as idiometric instruments. We discuss their distinctions from psychometric and clinimetric tools at theoretical, statistical, and applied levels.

scholarly journals Sexual Orientation, Gender Identity and Gender Expression-Based Violence in Catalan Universities: Qualitative Findings from University Students and Staff

2020 ◽  
Author(s):  
Elena Maria Gallardo Nieto ◽  
Aitor Gómez González ◽  
Regina Gairal-Casadó ◽  
Maria del Mar Ramis Salas
Keyword(s):  
Quality Of Life ◽  
Sexual Orientation ◽  
Gender Identity ◽  
University Students ◽  
Well Being ◽  
Two Dimensions ◽  
Gender Expression ◽  
Wide Range ◽  
And Gender

Abstract BackgroundHate crimes have raised in Spain and the gender and sexuality-based conflict persist worldwide which leads to this problem having an effect on health and wellbeing. Following a focus of transforming Higher Education Institutions (HEI), this research focusses on analysing how this problem affects undergraduate students in six Spanish universities. The goal of this study is to improve the quality of life of LGBTQI+ University students, breaking the silence that exists about the violence that this group suffer in Catalonia, Spain.MethodsFollowing the Communicative Methodology, this study has identified violence based on sexual orientation, gender identity or expression in the target universities and provided guidelines to improve anti-discrimination protocols. A qualitative method has reached experiences of university students, heads of equality commissions, professors and administrative staff regarding this conflict. Focussing on the qualitative research tools, 30 half-structured interviews were conducted with university students, staff and professors around issues related to LGBTQI-phobic violence: 1) perception of violence and discrimination, 2) institutional measures, 3) actions against violence. An analysis of exclusionary and transformative dimensions was used to identify emergent themes. ResultsWe have identified two dimensions for the analysis: exclusionary -those that maintain the problem-, and transformative, -those that contribute to transform the problem of LGBTQI-phobia-. On the one hand, exclusionary facts have been described by participants in the study as a wide range of forms of violence against the LGBTQI+ community perpetrated at university, mainly verbal and psychological. Moreover, equality commissions have not received reports of LGBTQI-phobic violence, and university staff and professors show certain unfamiliarity regarding measures and politics to prevent and intervene in cases of violence on the grounds of sexual orientation, gender identity and gender expression. On the other hand, in the study of variables that contribute to overcoming this conflict, actions of LGBTQI groups against violence and the professors’ commitment to intervene show relevant changes in student’s wellbeing. An improvement and implementation of anti-discrimination protocols with mandatory measures has also been documented.ConclusionsFindings highlight the need for evidence that contributes to the improvement of protocols, measures and politics to protect the LGBTQI community at university. A better understanding of violence based on sexual orientation, gender identity and gender expression in HEI’s may guide national and international governments to improve the LGBTQI collectives’ health and well-being. This study provides relevant information regarding this pressing challenge and presents an important impact achieved contributing to the improvement of the quality of life of the LGBTQI+ community.Trial registrationNot applicable

ASSESSMENT OF PATIENTS ' ACCESS TO PERIODONTAL CARE

2021 ◽  
pp. 165-169
Author(s):  
Станислав Валерьевич Микляев ◽  
Андрей Валерьевич Сущенко ◽  
Антон Дмитриевич Козлов ◽  
Ирина Павловна Полторацкая
Keyword(s):  
Quality Of Life ◽  
Inflammatory Diseases ◽  
Dental Health ◽  
Rapid Development ◽  
Periodontal Tissues ◽  
Life Itself ◽  
Severity Of The Disease ◽  
And Gender ◽  
Gender Groups

Воспалительные заболевания тканей пародонта (ВЗТП) являются актуальной проблемой современной стоматологии, которая приобретает большое медико-социальное значение. В большинстве случаев отсутствие адекватной гигиены полости рта и профилактики стоматологических заболеваний приводит к быстрому развитию воспалительного процесса в тканях пародонта. Следствием чего является преждевременная потеря зубов, нарушение функции жевания и эстетики. В настоящее время возрастает интерес ученых к проблеме стоматологического здоровья и профилактики как механизма повышения качества жизни пародонтологических больных. Согласно своему определению качество жизни определяет показатели, которые тесно связаны между собой и с состоянием здоровья человека. Исследования, которые проводились в нашей стране, показали, что весомое большинство населения не имеет понятие о данной проблеме, не понимает самого термина «качество жизни», ни его факторов, которые и определяют само качество жизни. В данной статье нами были рассмотрены результаты анкетирования пациентов, которые обратились за пародонтологической помощью. Все пациенты были разделены на возрастные и гендерные группы, в которых по итогам исследования прослеживалась взаимосвязь обращаемости за лечением в зависимости от возраста, тяжести заболевания и наличия вредных привычек Inflammatory diseases of periodontal tissues (VZTP) are an urgent problem of modern dentistry, which is of great medical and social importance. In most cases, the lack of adequate oral hygiene and prevention of dental diseases leads to the rapid development of the inflammatory process in the periodontal tissues. The result is premature loss of teeth, impaired chewing function and aesthetics. Currently, scientists are increasingly interested in the problem of dental health and prevention as a mechanism for improving the quality of life of periodontal patients. According to its definition, the quality of life determines indicators that are closely related to each other and to the state of human health. The research conducted in our country showed that a significant majority of the population has no idea about this problem, does not understand the term "quality of life", nor its factors that determine the quality of life itself. In this article, we reviewed the results of a survey of patients who applied for periodontal care. All patients were divided into age and gender groups, in which, according to the results of the study, the relationship between treatment requests was traced depending on age, the severity of the disease and the presence of bad habits

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

Contact precautions for colonisation with multidrug-resistant organisms and haemodialysis patient quality of life and mood: a pilot case-control study

2019 ◽  
pp. 19-25 ◽  
Author(s):  
Rathika Krishnasamy
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Social Function ◽  
Multidrug Resistant ◽  
Contact Precautions ◽  
Dialysis Vintage ◽  
Multidrug Resistant Organisms ◽  
And Gender ◽  
The Impact

Background: The rate of multidrug-resistant organisms (MDRO) colonisation in dialysis populations has increased over time. This study aimed to assess the effect of contact precautions and isolation on quality of life and mood for haemodialysis (HD) patients colonised with MDRO. Methods: Patients undergoing facility HD completed the Kidney Disease Quality of Life (KDQOL–SFTM), Beck Depression Inventory (BDI) and Personal Wellbeing-Index Adult (PWI-A). Patients colonised with MDRO were case-matched by age and gender with patients not colonised. Results: A total of 16 MDRO-colonised patients were matched with 16 controls. Groups were well matched for demographics and co-morbidities, other than a trend for older dialysis vintage in the MDRO group [7.2 years (interquartile range 4.6–10.0) compared to 3.2 (1.4–7.6) years, p=0.05]. Comparing MDRO-positive with negative patients, physical (30.5±10.7 vs. 34.6±7.3; p=0.2) and mental (46.5±11.2 vs. 48.5±12.5; p = 0.6) composite scores were not different between groups. The MDRO group reported poorer sleep quality (p=0.01) and sleep patterns (p=0.05), and lower social function (p=0.02). BDI scores were similar (MDRO-positive 10(3.5–21.0) vs. MDRO-negative 12(6.5–16.0), p=0.6). PWI-A scores were also similar in both groups; however, MDRO patients reported lower scores for “feeling safe”, p=0.03. Conclusion: While overall scores of quality of life and depression were similar between groups, the MDRO group reported poorer outcomes in sleep and social function. A larger cohort and qualitative interviews may give more detail of the impact of contact precautions and isolation on HD patients. The necessity for contact precautions for different MDRO needs consideration.

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

2021 ◽  
pp. 104345422199232
Author(s):  
Piera C. Robson ◽  
Mary S. Dietrich ◽  
Terrah Foster Akard
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Family Income ◽  
Hematologic Malignancy ◽  
Secondary Analysis ◽  
Quality Of Life Inventory ◽  
Younger Age ◽  
Self Reports ◽  
Life Inventory

Background: Children with cancer often experience decreased quality of life (QOL) throughout the illness trajectory. The purpose of this study was to explore the associations of demographic characteristics with QOL in children with advanced cancer. Methods: This secondary analysis was part of a larger randomized clinical trial that evaluated the efficacy of a legacy intervention for children (7–17 years) with relapsed/refractory cancer and their primary parent caregivers. Assessments included child self-reports on the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Researchers used descriptive and linear regression statistical methods. Results: Children ( n = 128) averaged 10.9 years (SD = 3.0). The majority were female ( n = 68, 53%), white ( n = 107, 84%), had a hematologic malignancy ( n = 67, 52%), with family incomes of $50,000 or less ( n = 81, 63.3%). Statistically significant positive associations of both age and income level with PedsQL scores were observed ( p < .05) but not gender ( p > .05). The strongest correlations for age were with the procedural anxiety ( beta = 0.42), treatment anxiety ( beta = 0.26), and total ( beta = 0.28) scores (all p < .01). In general, there was a positive correlation between family income levels and PedsQL scores ( p < .05). The strongest correlations for income were with nausea ( R = 0.49), appearance ( R = 0.44), pain, and treatment anxiety (both R = 0.42) (all p < .01). Associations adjusted for age remained essentially the same (all p < .01). Discussion: Children with advanced cancer with lower family income and younger age are at high risk for poorer QOL. Oncology nurses should seek to identify families who may benefit from additional resources to promote QOL.

scholarly journals Physical Activity and Quality of Life in Hemodialysis Patients and Healthy Controls: A Cross-Sectional Study

2021 ◽  
Vol 18 (4) ◽  
pp. 1978
Author(s):  
Tjaša Filipčič ◽  
Špela Bogataj ◽  
Jernej Pajek ◽  
Maja Pajek
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Everyday Life ◽  
Habitual Physical Activity ◽  
Healthy Controls ◽  
Age And Gender ◽  
Comorbidity Score ◽  
Sf 36 ◽  
And Gender

Hemodialysis (HD) patients have lower functional abilities compared to healthy people, and this is associated with lower physical activity in everyday life. This may affect their quality of life, but research on this topic is limited. Therefore, the present study aimed to determine the relationship between habitual physical activity and quality of life in HD patients and healthy controls. Ninety-three HD patients and 140 controls participated in the study. Quality of life was assessed using a 36-item medical outcomes study short-form health survey (SF-36). Human Activity Profile (HAP) was used to assess habitual physical activity. The adjusted activity score (AAS) from HAP, age, gender, fat tissue index (FTI), lean tissue index (LTI), and Davies comorbidity score were analyzed as possible predictors of the Physical Component Summary (PCS) of the SF-36. Three sequential linear models were used to model PCS. In Model 1, PCS was regressed by gender and age; in Model 2 the LTI, FTI, and Davies comorbidity scores were added. Model 3 also included AAS. After controlling for age and gender (ModelHD 1: p = 0.056), LTI, FTI, and Davies comorbidity score effects (ModelHD 2: p = 0.181), the AAS accounted for 32% of the variation in PCS of HD patients (ModelHD 3: p < 0.001). Consequently, the PCS of HD patients would increase by 0.431 points if the AAS increased by one point. However, in healthy controls, AAS had a lower impact than in the HD sample (B = 0.359 vs. 0.431), while the corresponding effects of age and gender (ModelH 1: p < 0.001), LTI, FTI, and Davies comorbidity score (ModelH 2: p < 0.001) were adjusted for. The proportion of variation in PCS attributed to AAS was 14.9% (ModelH 3: p < 0.001). The current study results showed that physical activity in everyday life as measured by the HAP questionnaire is associated to a higher degree with the quality of life of HD patients than in healthy subjects. Routine physical activity programs are therefore highly justified, and the nephrology community should play a leading role in this effort.

scholarly journals Physical Activity and Sport for Acquired Brain Injury (PASABI): A Non-Randomized Controlled Trial

Medicina ◽  
2021 ◽  
Vol 57 (2) ◽  
pp. 122
Author(s):  
Marta Pérez-Rodríguez ◽  
Saleky García-Gómez ◽  
Javier Coterón ◽  
Juan José García-Hernández ◽  
Javier Pérez-Tejero
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Brain Injury ◽  
Functional Capacity ◽  
Intervention Group ◽  
Chronic Phase ◽  
Acquired Brain Injury ◽  
Control Group ◽  
Wide Range

Background and objectives: Acquired brain injury (ABI) is the first cause of disability and physical activity (PA) is a key element in functional recovery and health-related quality of life (HRQoL) during the subacute and chronic phases. However, it is necessary to develop PA programs that respond to the heterogeneity and needs of this population. The aim of this study was to assess the effectiveness of a PA program on the HRQoL in this population. Materials and Methods: With regard to recruitment, after baseline evaluations, participants were assigned to either the intervention group (IG, n = 38) or the control group (CG, n = 35). Functional capacity, mood, quality of life and depression were measured pre- and post-intervention. The IG underwent the “Physical Activity and Sport for Acquired Brain Injury” (PASABI) program, which was designed to improve HRQoL (1-h sessions, two to four sessions/week for 18 weeks). The CG underwent a standard rehabilitation program without PA. Results: Results for the IG indicated significant differences and large effect sizes for the physical and mental dimensions of quality of life, as well as mood and functional capacity, indicating an increase in HRQoL. No significant differences were found for the CG across any variables. Conclusions: The PASABI program was feasible and beneficial for improving physiological and functionality variables in the IG. The wide range of the activities of the PASABI program allow its application to a large number of people with ABI, promoting health through PA, especially in the chronic phase.

Disability and quality of life in patients with low back pain: Focus on sex and gender: A cross-sectional study

2021 ◽  
pp. 1-8
Author(s):  
Yen-Mou Lu ◽  
Chung-Hwan Chen ◽  
Yi-Jing Lue
Keyword(s):  
Quality Of Life ◽  
Low Back Pain ◽  
Back Pain ◽  
Gender Identity ◽  
Gender Role ◽  
Low Back ◽  
Sex And Gender ◽  
Cross Sectional ◽  
And Gender

BACKGROUND: Sex and gender affect responses to pain, but little is known about disability and quality of life. OBJECTIVES: To investigate the effects of sex and gender on disability and health-related quality of life (HRQOL) in patients with low back pain. METHODS: Ninety-three patients with low back pain were included in this cross-sectional survey study. Disability, HRQOL and gender identity were respectively assessed with the Oswestry Disability Index, Short Form-36 and Bem Sex Role Inventory. The participants were classified into four gender role orientations (masculinity, femininity, androgyny and undifferentiated). One-way analysis of variance was used to analyze both the sex and the gender role orientation. RESULTS: Females had higher disability than males (p< 0.05), but in gender identity, no significant difference was found. Seven domains of HRQOL were lower than the healthy norms. Males experienced greater impacts than females on vitality and mental health (p< 0.05). For gender identity, five domains of HRQOL had significant differences (p< 0.05). Masculinity orientation had the least impact on four domains (p< 0.05), while undifferentiated orientation had the largest impact on all domains. CONCLUSION: Sex and gender effects can be used to analyze disability and HRQOL in patients with low back pain. Females have higher disability, while HRQOL is greatly influenced by different gender role orientations.

scholarly journals Quality of Life in Opioid Replacement Therapy: A Naturalistic Cross-Sectional Comparison of Methadone/Levomethadone, Buprenorphine, and Diamorphine Patients

2021 ◽  
pp. 1-10
Author(s):  
Stephanie Paula Elisabeth Guillery ◽  
Rainer Hellweg ◽  
Golo Kronenberg ◽  
Ulrich Bohr ◽  
Hagen Kunte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Replacement Therapy ◽  
Psychological Functioning ◽  
Treatment Options ◽  
Chronically Ill ◽  
Cross Sectional ◽  
Life Improvement ◽  
Methadone Patients ◽  
Opioid Replacement Therapy

<b><i>Background:</i></b> Research on quality of life (QoL) of chronically ill patients provides an opportunity to evaluate the efficacy of long-term treatments. Although it is established that opioid replacement therapy is an effective treatment for opioid-dependent patients, there is little knowledge about physical and psychological functioning of QoL for different treatment options. <b><i>Objectives:</i></b> Altogether, 248 opioid-dependent patients receiving substitution treatment with either methadone/levomethadone (<i>n</i> = 126), diamorphine (<i>n</i> = 85), or buprenorphine (<i>n</i> = 37) were recruited in 6 German therapy centers. <b><i>Methods:</i></b> Sociodemographic data were collected. QoL – physical and psychological functioning – for different substitutes was assessed using the <i>Profile of the Quality of Life in the Chronically Ill</i> (PLC) questionnaire. <b><i>Results:</i></b> Patient groups were similar regarding age and duration of opioid dependence. Employment rate was significantly higher (<i>p</i> &#x3c; 0.005, φ = 0.22) in the buprenorphine group (46%) compared to methadone (18%). Dosage adjustments were more frequent (<i>p</i> &#x3c; 0.001, φ = 0.29) in diamorphine (55%) than in methadone (30%) or buprenorphine (19%) patients. Buprenorphine and diamorphine patients rated their physical functioning substantially higher than methadone patients (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.141). Diamorphine patients reported a higher psychological functioning (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.078) and overall life improvement (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.060) compared to methadone, but not compared to buprenorphine patients (both <i>p</i> &#x3e; 0.25). <b><i>Conclusion:</i></b> Measurement of important QoL aspects indicates significant differences for physical and psychological functioning in patients receiving the substitutes methadone/levomethadone, diamorphine, and buprenorphine. This could be relevant for the differential therapy of opioid addiction.

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