The role of acceptance and values in quality of life in patients with an acquired brain injury: a questionnaire study.
Ontology highlight
ABSTRACT: Objective
An acquired brain injury (ABI) is a challenge for an individual's quality of life (QOL). In several chronic illnesses acceptance has been found to be associated with a better health-related quality of life. This study investigated whether this relationship is also found in patients with ABI. We also explored the impact of the perceived ability to live according to one's own values (life-values-match).Methods
A total of 68 individuals (18-65 years of age) with an acquired brain injury completed a battery of questionnaires. The relations between health-related QOL (SF-36) and disease specific QOL (EBIQ; European Brain Injury Questionnaire), and personal values (Schwartz Values Inventory) and acceptance (ICQ; Illness Cognitions Questionnaire) were investigated. An additional question measured the life-values-match. Rehabilitation professionals reported the extent of impairment involved.Results
Acceptance was positively associated with mental aspects of health-related QOL and the EBIQ Core Scale, after demographic variables and the extent of impairment were introduced in the regression. In a post hoc analysis we found that the life-values-match mediated the relationship between acceptance and mental aspects of QOL.Conclusion
In patients with an ABI, promoting acceptance may be useful to protect QOL. Strengthening the life-values-match may be a way to accomplish this.
SUBMITTER: Van Bost G
PROVIDER: S-EPMC5501966 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument.MethodThe sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool.ResultsANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL's evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less).ConclusionsQoL must be considered from the earliest moments after ABI to obtain more significant improvements.
| S-EPMC7848640 | biostudies-literature
Project description:Background Traumatic brain injury (TBI) commonly causes death and disability that can result in productivity loss and economic burden. The health-related quality of life (HRQoL) has been measured in patients suffering from TBI, both in clinical and socioeconomic perspectives. The study aimed to assess the HRQoL in patients following TBI using the European quality of life measure-5 domain-5 level (EQ-5D-5L) questionnaire and develop models for predicting the EQ-5D-5L index score in patients with TBI. Method A cross-sectional study was performed with 193 TBI patients who had completed the EQ-5D-5L questionnaire. The clinical characteristics, Glasgow coma scale (GCS) score, treatment, and Glasgow outcome scale (GOS) were collected. The total data was divided into training data (80%) and testing data (20%); hence, the factors affecting the EQ-5D-5L index scores were used to develop the predictive model with linear and nonlinear regression. The performances of the predictive models were estimated with the adjusted coefficient of determination (R 2 ) and the root mean square error (RMSE). Results A good recovery was found at 96.4%, while 2.1% displayed an unfavorable outcome. Moreover, the mean EQ-5D-5L index scores were 0.91558 (standard deviation [SD] 1.09639). GCS score, pupillary light reflex, surgery, and GOS score significantly correlated with the HRQoL scores. The multiple linear regression model had a high adjusted R 2 of 0.6971 and a low RMSE of 0.06701, while the polynomial regression developed a nonlinear model that had the highest adjusted R 2 of 0.6843 and the lowest RMSE of 0.06748. Conclusions A strong positive correlation between the physician-based outcome as GOS and HRQoL was observed. Furthermore, both the linear and nonlinear regression models were acceptable approaches to predict the HRQoL of patients after TBI. There would be limitations for estimating the HRQoL in unconscious or intubated patients. The HRQoL obtained from the predictive models would be an alternative method to resolve this problem.
| S-EPMC8211484 | biostudies-literature
Project description:BackgroundThere is growing interest in health related quality of life (HRQoL) as an outcome measure in international trials. However, there might be differences in the conceptualization of HRQoL across different socio-cultural groups. The objectives of current study were: (I) to compare HRQoL, measured with the short form (SF)-36 of Dutch and Chinese traumatic brain injury (TBI) patients 1 year after injury and; (II) to assess whether differences in SF-36 profiles could be explained by cultural differences in HRQoL conceptualization. TBI patients are of particular interest because this is an important cause of diverse impairments and disabilities in functional, physical, emotional, cognitive, and social domains that may drastically reduce HRQoL.MethodsA prospective cohort study on adult TBI patients in the Netherlands (RUBICS) and a retrospective cohort study in China were used to compare HRQoL 1 year post-injury. Differences on subscales were assessed with the Mann-Whitney U-test. The internal consistency, interscale correlations, item-internal consistency and item-discriminate validity of Dutch and Chinese SF-36 profiles were examined. Confirmatory factor analysis was performed to assess whether Dutch and Chinese data fitted the SF-36 two factor-model (physical and mental construct).ResultsFour hundred forty seven Dutch and 173 Chinese TBI patients were included. Dutch patients obtained significantly higher scores on role limitations due to emotional problems (p < .001) and general health (p < .001), while Chinese patients obtained significantly higher scores on physical functioning (p < .001) and bodily pain (p = .001). Scores on these subscales were not explained by cultural differences in conceptualization, since item- and scale statistics were all sufficient. However, differences among Dutch and Chinese patients were found in the conceptualization of the domains vitality, mental health and social functioning.ConclusionsOne year after TBI, Dutch and Chinese patients reported a different pattern of HRQoL. Further, there might be cultural differences in the conceptualization of some of the SF-36 subscales, which has implications for outcome evaluation in multi-national trials.
| S-EPMC5391570 | biostudies-literature
Project description:OBJECTIVE:Parents' emotional, cognitive, and behavioral responses are highly influential on children's pain and functional outcomes. One important response to pediatric pain is acceptance: the degree to which an individual participates in routine daily activities in the presence of pain and is willing to let pain be a part of their life without efforts to control or avoid it. However, no tool currently exists to assess parents' own acceptance of their child's pain. The aim of this study was to validate the Parent Pain Acceptance Questionnaire (PPAQ). MATERIALS AND METHODS:The PPAQ was administered to 310 parents of youth with chronic pain in an outpatient pediatric headache program and a day hospital pain rehabilitation program. An exploratory factor analysis revealed 2 factors for the PPAQ: an 11-item Activity Engagement scale and a 4-item Acceptance of Pain-related Thoughts and Feelings scale. RESULTS:The PPAQ total score and subscales demonstrated strong internal consistency. Greater parent pain acceptance was positively associated with child pain acceptance, and was negatively correlated with parent protective behaviors, parent minimizing behaviors, parent and child pain catastrophizing, and child fear of pain. Parent protective behaviors and child pain acceptance both served as mediators of the relationship between parent pain acceptance and child functional disability. CONCLUSIONS:The PPAQ is a valid measure of parent pain acceptance and may provide valuable insights into parent responses to child pain and the ways in which parent acceptance influences child outcomes. Clinical implications and suggestions for future research are discussed.
| S-EPMC4326631 | biostudies-literature
Project description:AIM:Health-related quality of life is impaired in patients with autoimmune hepatitis, but the association between health-related quality of life and patients' backgrounds remains unknown. We assessed health-related quality of life in patients with autoimmune hepatitis and identified factors associated with its impairment. METHODS:We assessed health-related quality of life in patients with autoimmune hepatitis, patients with chronic hepatitis C, and healthy subjects using the Japanese version of the Chronic Liver Disease Questionnaire and the 36-Item Short Form Survey. We compared health-related quality of life in patients with autoimmune hepatitis with that of patients with chronic hepatitis C and healthy subjects. RESULTS:A total of 265 patients with autoimmune hepatitis, 88 patients with chronic hepatitis C, and 97 healthy subjects were enrolled; most patients were women. The median ages of patients were 65, 66, and 57 years, respectively. Of these patients with autoimmune hepatitis, 10.6% and 57.0% had cirrhosis and comorbid diseases, respectively. The overall Chronic Liver Disease Questionnaire scores (5.5 vs. 6.2, P < 0.001) and physical (48.1 vs. 54.2, P < 0.001) and mental (51.8 vs. 55.0, P = 0.004) component summaries of 36-Item Short Form Survey were significantly lower in patients with autoimmune hepatitis than in healthy subjects, and similar to scores in patients with chronic hepatitis C. Having cirrhosis, comorbid diseases, and treatment for autoimmune hepatitis were associated with impaired health-related quality of life among patients with autoimmune hepatitis. In particular, prednisolone use was associated with lower scores on the worry domain of the Chronic Liver Disease Questionnaire. CONCLUSIONS:Patients with autoimmune hepatitis showed impairment in health-related quality of life, which was associated with not only disease progression, but also comorbid diseases and treatment. Ways to improve health-related quality of life should be considered in patients with AIH when disease outcome is not favorable and when using prednisolone.
| S-EPMC6171853 | biostudies-literature
Project description:ObjectiveTo validate the Brain Symptom and Impact Questionnaire (BASIQ) version 1.0 for brain metastases.MethodsPatients with brain metastases and their healthcare professionals (HCPs) assessed the relevance of the BASIQ on a 0-10 scale with 10 as extremely relevant.ResultsA total of 52 patients and 20 HCPs participated in this study. In total, 95% of HCPs and 85% of patients found all items relevant. Balance and walking ability were rated relevant by 100% of patients and HCPs. Headache, nausea, energy, memory and ability to do housework were also rated relevant by 100% of HCPs. Over 95% of patients determined the items of ability to do housework, tiredness, energy, vision, memory and putting ideas into words as relevant. There were no items rated below 7 by patients or below 5 by HCPs.ConclusionThis study indicates that BASIQ version 1.0 has valid content items encompassing disease-related symptom and impact on daily living.
| S-EPMC6124364 | biostudies-literature
Project description:BACKGROUND:Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS:Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS:Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS:MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).
| S-EPMC6823967 | biostudies-literature
Project description:AimLife changes due to the sudden onset of acquired brain injury (ABI) are drastic personal and social changes that require adaptation and are also an important indicator of the quality of life of family caregivers. However, there are no instruments for evaluating life change adaptation among family caregivers of individuals with acquired brain injury. This study aimed to develop the Life Change Adaptation Scale (LCAS) for family caregivers of individuals with ABI and examine its reliability and validity.MethodsA cross-sectional study was conducted using a self-reported questionnaire. A total of 1622 family caregivers of individuals with ABI who belonged to 82 associations for families of individuals with ABI were selected as eligible participants. The construct validity was evaluated using a confirmatory factor analysis. Internal consistency was calculated using Cronbach's alpha. The K6 was also administered to assess the criterion-related validity of the LCAS.ResultsIn total, 339 valid responses were received. The confirmatory factor analysis identified eight items from two domains, "Changes in the appraisal of caregiving resources" and "Changes in the health belief as a caregiver" (goodness of fit index = 0.963, adjusted goodness of fit index = 0.926, comparative fit index = 0.986, root mean square error of approximation = 0.043.) Cronbach's alpha was 0.84. The LCAS was negatively correlated with the K6 (r = -0.504; P<0.001).ConclusionsThe LCAS is a brief, easy-to-administer instrument that is reliable and valid for family caregivers of individuals with ABI. This study contributes to the assessment and identification by family caregivers of individuals with ABI who require aid in adapting to life changes. Further research should be undertaken to verify the predictive value in a longitudinal study and to attempt to apply the LCAS to assess a broader range of subjects in a wider range of settings.
| S-EPMC7595313 | biostudies-literature
Project description:Objective: Acquired brain injury (ABI) is a leading cause of long-term disability. This calls for effective and accessible interventions to support participation in the community over time. One promising avenue to answer this need is telerehabilitation. Prior to conducting a larger trial, the main objective of this pilot study is to explore the feasibility, acceptability, and preliminary efficacy of a metacognitive occupation-based intervention in a telerehabilitation format with adults and older adults in the chronic phase after ABI. Methods: Five community dwelling participants (ages 65-72), 6-10 months post-ABI, with scores 2-4 on the modified Rankin scale and without dementia, completed the teleintervention. The intervention included ~10 weekly videoconferencing sessions administered by an occupational therapist using the Cognitive Orientation to Daily Occupational Performance approach. Each participant defined five functional goals and three were trained and two were not trained during the intervention. Evaluations were conducted at pre, post, and 3-month follow-up. The primary outcome measures included activity performance (The Canadian Occupational Performance Measure; COPM), participation (the Mayo-Portland Adaptability Inventory-4 Participation Index; MPAI-4-P), and quality of life (QoL) (stroke impact scale; SIS). Other measures included a feedback interview, satisfaction questionnaire, field notes, and a treatment fidelity checklist. Results: The teleintervention was found to be feasible and the participants expressed a high degree of satisfaction with the intervention and the technology use. A Wilcoxon Signed-Ranks test indicated statistically significant improvements post intervention in COPM performance (z = -2.023, p = 0.043) and satisfaction (z = -2.023, p = 0.043) ratings. Additionally, clinically significant improvements (≥2 points) in both performance and satisfaction with performance were found for each participant in at least three of their five defined functional goals. Trends toward significant improvement were found in MPAI-4-P ratings post intervention (z = -1.826, p = 0.068). Furthermore, clinically significant improvements (≥15 points) post intervention were found for each participant in some subscales of the SIS. Results were partially maintained at 3-month follow-up. Conclusions: This pilot study demonstrated the feasibility of a metacognitive occupation-based telerehabilitation intervention and its potential benefits in activity performance, participation, and QoL for older adults coping with long-term disability following ABI. Clinical Trial Registration: www.ClinicalTrials.gov, identifier: NCT03048708.
| S-EPMC6908485 | biostudies-literature
Project description:To develop and validate a new instrument for measuring health-related quality of life in mechanically ventilated patients in the ICU.Expert panel consensus and a prospective longitudinal survey.Urban, academic, tertiary care medical center.One hundred fifteen awake, mechanically ventilated, ICU patients who either received a tracheostomy or remained endotracheally intubated.A new quality-of-life instrument was developed and validated by using pilot study data; informal interviews of patients, families, and nurses; expert panel consensus; and item analyses. The new instrument was used to measure quality of life at three time points (5 d, 10 d, and 15 d after intubation).A new 12-item quality-of-life questionnaire for mechanically ventilated patients was developed. Patients' responses to the quality-of-life questionnaire revealed moderate-to-high correlations with EuroQol scores (r = -0.4 to -0.9) and the EuroQol Visual Analog Scale (r = 0.6-0.9) across the three times and a moderate correlation with the Sequential Organ Failure Assessment tool (r = 0.5) at 10 days after intubation. Cronbach ? ranged from 0.80 to 0.94 across the three times. The quality-of-life questionnaire for mechanically ventilated patients was responsive to changes in treatment modalities (tracheostomy vs no tracheostomy and early vs late tracheostomy demarcated by 10 d of intubation). Exploratory factor analysis revealed that this instrument was unidimensional in nature.The new quality-of-life questionnaire for mechanically ventilated patients is valid and can reliably measure quality of life in mechanically ventilated ICU patients. It may provide clinicians with an accurate assessment of patients' quality of life and facilitate optimal decision making regarding patients' ICU plan of care.
| S-EPMC4269563 | biostudies-literature