scholarly journals Measurement of Quality of Life III. From the IQOL Theory to the Global, Generic SEQOL Questionnaire

2003 ◽  
Vol 3 ◽  
pp. 972-991 ◽  
Author(s):  
Soren Ventegodt ◽  
Joav Merrick ◽  
Niels Jorgen Andersen

The Danish Quality of Life Survey is based on the philosophy of life known as the integrative quality-of-life (IQOL) theory. It consists of eight different quality-of-life concepts, ranging from the superficially subjective via the deeply existential to the superficially objective (well being, satisfaction with life, happiness, meaning in life, biological order, realizing life potential, fulfillment of needs, and objective factors [ability of functioning and fulfilling societal norms]).This paper presents the work underlying the formulation of the theories of a good life and how these theories came to be expressed in a comprehensive, multidimensional, generic questionnaire for the evaluation of the global quality of life � SEQOL (self-evaluation of quality of life) � presented in full length in this paper. The instruments and theories on which the Quality of Life Survey was based are constantly being updated. It is an on-going process due to aspects such as human development, language, and culture. We arrived at eight rating scales for the quality of life that, guided by the IQOL theory, were combined into a global and generic quality-of-life rating scale. This was simplified to the validated QOL5 with only five questions, made for use in clinical databases. Unfortunately, the depth of human existence is to some extent lost in QOL5.We continue to aim towards greater simplicity, precision, and depth in the questions in order to explore the depths of human existence. We have not yet found a final form that enables us to fully rate the quality of life in practice. We hope that the several hundred questions we found necessary to adequately implement the theories of the Quality of Life Survey can be replaced by far fewer; ideally, only eight questions representing the eight component theories. These eight ideal questions have not yet been evaluated, and therefore they should not form the basis of a survey. However, the perspective is clear. If eight simple questions can accurately rate the quality of life as well as its depth, we have found an instrument of immense practical scope.

2003 ◽  
Vol 3 ◽  
pp. 1030-1040 ◽  
Author(s):  
Soren Ventegodt ◽  
Joav Merrick ◽  
Niels Jorgen Andersen

Quality of life (QOL) means a good life and we believe that a good life is the same as living a life with a high quality. This paper presents the theoretical and philosophical framework of the Danish Quality of Life Survey, and of the SEQOL, QOL5, and QOL1 questionnaires.The notion of a good life can be observed from subjective to the objective, where this spectrum incorporates a number of existing quality of life theories. We call this spectrum the integrative quality-of-life (IQOL) theory and discuss the following aspects in this paper: well being, satisfaction with life, happiness, meaning in life, the biological information system (�balance�), realizing life potential, fulfillment of needs, and objective factors.The philosophy of life outlined in this paper tries to measure the global quality of life with questions derived from the integrative theory of the quality of life. The IQOL theory is an overall theory or meta-theory encompassing eight more factual theories in a subjective-existential-objective spectrum. Other philosophies of life can stress other aspects of life, but by this notion of introducing such an existential depth into the health and social sciences, we believe to have taken a necessary step towards a new humility and respect for the richness and complexity of life.


2021 ◽  
Vol 10 (10) ◽  
pp. 2187
Author(s):  
Omrit Feldman ◽  
Eran Goldstien ◽  
Benjamin Rolnik ◽  
Ariel B. Ganz ◽  
Shahar Lev-Ari

Stuttering is a speech disorder that can cause disturbances in the timing and flow of speech. In addition to being a communication disorder, stuttering is often accompanied by a reduction in the quality of life and has impacts on social status, mental well-being, self-acceptance, and the chances of integration into the labor market. The Inquiry Based Stress Reduction (IBSR) program, developed in the United States by Byron Katie in 1986, is the clinical application of “The Work” method (Thework.com) and represents an emerging mindfulness and cognitive-reframing method. IBSR has been demonstrated to improve mental health and well-being in adults and may alleviate psychological and psychosocial symptoms of stuttering. The purpose of this trial was to examine the effect of a 12-week IBSR intervention on the overall stuttering experience and indicators of anxiety, psychological flexibility, and well-being among adults who stutter (AWS). This study was a randomized controlled clinical trial. Participants were randomized to IBSR (n = 28) and control (n = 28) groups. Validated questionnaires of overall stuttering experience (OASES-A), anxiety (STAI), psychological flexibility (PFQ), and satisfaction with life (SWLS) were completed before, after, and one month after the intervention. An intention-to-treat approach was implemented for analysis. Our results show that participants in the IBSR intervention group exhibited a greater improvement in their overall stuttering experience as compared to the control group, as well as in general information on stuttering awareness and perception, reactions to stuttering, communication in daily situations, and quality of life. In addition, we found a greater reduction in anxiety levels and an increase in satisfaction-with-life scores in the IBSR group. These results indicate that IBSR can improve the overall stuttering experience.


2010 ◽  
pp. 206-214 ◽  
Author(s):  
Claudia Patricia Valencia ◽  
Gladys Eugenia Canaval ◽  
Diana Marín ◽  
Carmen J. Portillo

Antecedents: The Human Immunodeficiency Virus is currently considered a chronic disease; hence, quality of life is an important goal for those suffering the disease or living with someone afflicted by the virus. Objectives: We sought to measure the quality of life in individuals living with acquired immunodeficiency syndrome virus and establish its relationship with socio-demographic and clinical variables. Methods: This is a cross-sectional, descriptive study with a sample of 137 HIV-infected individuals attending three healthcare institutions in the city of Cali, Colombia. Quality of life was measured via the HIV/AIDS-Targeted Quality of Life (HAT-QoL) instrument. The descriptive analyses included mean and standard deviation calculations. To determine the candidate variables, we used the student t test and the Pearson correlation. The response variable in the multiple linear regression was the score for quality of life. Results: Some 27% of the sample were women and 3% were transgender; the mean age of the sample was 35 + 10.2 years; 88% had some type of health insurance; 27% had been diagnosed with AIDS, and 64% were taking antiretroviral medications at the time of the study. Quality of life was measured through a standard scale with scores from 0 to 100. Participants’ global quality of life mean was 59 + 17.8. The quality-of-life dimensions with the highest scores were sexual function, satisfaction with the healthcare provider, and satisfaction with life. The highest quality-of-life scores were obtained by participants who received antiretroviral therapy, had health insurance, lower symptoms of depression, low frequency and intensity of symptoms, and no prior reports of sexual abuse. Eight variables explained 53% of the variability of the global quality of life. Conclusions: Those receiving antiretroviral therapy and who report fewer symptoms best perceived their quality of life. Implications for practice: Healthcare providers, especially nursing professional face a challenge in caring to alleviate symptoms and contribute to improving the quality of life of their patients.


Neurology ◽  
2019 ◽  
Vol 93 (10) ◽  
pp. e938-e945 ◽  
Author(s):  
Magdalena Kuzma-Kozakiewicz ◽  
Peter M. Andersen ◽  
Katarzyna Ciecwierska ◽  
Cynthia Vázquez ◽  
Olga Helczyk ◽  
...  

ObjectiveThis is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme–Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).MethodsIn this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale–revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory–12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.ResultsThe majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.InterpretationSome patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.


2005 ◽  
Vol 85 (9) ◽  
pp. 851-860 ◽  
Author(s):  
Rick W Wilson ◽  
Lorraine M Hutson ◽  
Deborah VanStry

Abstract Background and Purpose. A variety of health status questionnaires have been used in physical rehabilitation studies involving women with breast cancer, but the usefulness of these questionnaires as measures of physical, mental, and social well-being has not been firmly established in this population. This study was conducted to assess the convergent and discriminative properties of the RAND 36-Item Health Survey and the Functional Living Index–Cancer (FLIC). Subjects Both questionnaires were administered concurrently to 110 outpatients treated surgically for breast cancer at a National Cancer Institute–designated Comprehensive Cancer Center. Methods Bivariate correlations and a multi-trait–multi-method matrix were used to evaluate convergent validity between summary and subscale scores from both questionnaires. Discriminative validity was assessed by testing for expected differences between women who were treated for breast cancer with and without secondary lymphedema. Results Correlations between overall quality-of-life scores produced by both questionnaires were modest, indicating that the instruments focus on somewhat different aspects of health-related quality of life. Global quality-of-life and physical well-being scores were lower among women with lymphedema secondary to breast cancer. The FLIC demonstrated greater sensitivity to group differences in emotional well-being. Discussion and Conclusion The results suggest that neither questionnaire can be replaced by the other in studies of women treated for breast cancer. Both questionnaires were able to distinguish physical functioning deficits in women with lymphedema secondary to breast cancer, but symptom- or treatment-specific measures may be required to assess more subtle difficulties related to the emotional aspects of health and functioning in this population.


2010 ◽  
Vol 4 (2) ◽  
pp. 131-137 ◽  
Author(s):  
Glória Maria Almeida Souza Tedrus ◽  
Lineu Correa Fonseca ◽  
Patrícia Mencaroni Kange

Abstract Parkinson's disease (PD) is a chronic disease manifested principally by motor signs and symptoms, but with frequent neuropsychological alterations. Objectives: To study the relationship between clinical and cognitive aspects and the perception of quality of life (QOL) in PD patients. Methods: Twenty consecutive patients (13 men) with idiopathic PD (mean age: 64.5y), mean disease time of 7.8 years and at stages 1-3 according to the modified Hoehn and Yahr staging scale (HYS), all outpatients from the Neurology Department of the Celso Pierro General and Maternity Hospital (PUC-Campinas), were analyzed. The following were applied: a clinical-neurological assessment, the Mini-Mental State Examination (MMSE), standard neuropsychological battery of the CERAD (Consortium to Establish a Registry for Alzheimer's Disease), Hamilton Depression Rating Scale (HAM-D) and a QOL questionnaire (Parkinson's Disease Questionnaire - PDQ-39). Statistical analysis was carried out at a significance level of p<0.05. Results: On the PDQ-39 under the sections total, mobility and activities of daily living, and the items motor compromise (HYS) and language of the MMSE were predictors of worse QOL. Verbal fluency was a factor for emotional well-being on the PDQ-39, whereas higher scores for HAM-D and worse performance on the item attention and calculation of the MMSE were associated with worse QOL in the social support section. Total score on the MMSE and educational level were QOL factors in cognition Conclusions: The findings of the present study suggest that clinical, cognitive, motor or other depression-related factors contribute differently to the domains of QOL.


2018 ◽  
Vol 18 (1) ◽  
pp. 29-37 ◽  
Author(s):  
Andreas Goebel ◽  
Anu Jacob ◽  
Bernhard Frank ◽  
Paul Sacco ◽  
Guillermo Alexander ◽  
...  

Abstract Background and aims: Current therapies for persistent complex regional pain syndrome (CRPS) are grossly inadequate. With accruing evidence to support an underlying immunological process and anecdotal evidence suggesting potential efficacy of mycophenolate, we wished to explore the feasibility and effectiveness of this treatment in patients with CRPS. Methods: A randomised, open, parallel, proof of concept trial was conducted. Patients with Budapest research criteria CRPS of >2-year duration and moderate or high pain intensity (numeric rating scale score ≥5) were enrolled. Eligible patients were randomised 1:1 to openly receive mycophenolate as add-on treatment, or their usual treatment alone, over 5.5 months. They then switched to the other treatment arm for 5.5 months. The main outcome was average the patients’ average pain intensity recorded over 14 days, between 5.0 and 5.5 months post randomisation, on 11-point (0–10) numeric rating scales, compared between trial arms. Skin sensitivities and additional outcomes were also assessed. Results: Twelve patients were enrolled. Nine provided outcomes and were analysed for the main outcome. Mycophenolate treatment was significantly more effective than control [drug-group mean (SD): pre: 7.4 (1.2)- post: 5.2 (1.3), n=4, control: pre: 7.7 (1.4)- post: 8.1 (0.9), n=5; −2.8 (95% CI: −4.7, −1.0), p=0.01, analysis of covariance]. There were four treatment responders (to mycophenolate treatment either before, or after switch), whose initial exquisite skin hyper-sensitivities, function and quality of life strongly improved. Side effects including itchiness, skin-cryptitis, increased pain, and increased depression caused 45% of the subjects to stop taking mycophenolate. Conclusions: Mycophenolate appears to reduce pain intensity and improve quality of life in a subgroup of patients with persistent CRPS. Implications: These results support the feasibility of conducting a definite trial to confirm the efficacy and effect size of mycophenolate treatment for persistent CRPS (EudraCT 2015-000263-14).


2004 ◽  
Vol 22 (20) ◽  
pp. 4202-4208 ◽  
Author(s):  
A.G.E.M. de Boer ◽  
J.J.B. van Lanschot ◽  
J.W. van Sandick ◽  
J.B.F. Hulscher ◽  
P.F.M. Stalmeier ◽  
...  

PurposeTo assess 3 years of quality of life in patients with esophageal cancer in a randomized trial comparing limited transhiatal resection with extended transthoracic resection.Patients and MethodsQuality-of-life questionnaires were sent at baseline and at 5 weeks; 3, 6, 9, and 12 months; and 1.5, 2, 2.5, and 3 years after surgery. Physical and psychological symptoms, activity level, and global quality of life were assessed with the disease-specific Rotterdam Symptom Checklist. Generic quality of life was measured with the Medical Outcomes Study Short Form-20.ResultsA total of 199 patients participated. Physical symptoms and activity level declined after the operation and gradually returned toward baseline within the first year (P < .01). Psychological well-being consistently improved after baseline (P < .01), whereas global quality of life showed a small initial decline followed by continuous gradual improvement (P < .01). Quality of life stabilized in the second and third year. Three months after the operation, patients in the transhiatal esophagectomy group (n = 96) reported fewer physical symptoms (P = .01) and better activity levels (P < .01) than patients in the transthoracic group (n = 103), but no differences were found at any other measurement point. For psychological symptoms and global quality of life, no differences were found at any follow-up measurement. A similar pattern was found for generic quality of life.ConclusionNo lasting differences in quality of life of patients who underwent either transhiatal or transthoracic resection were found. Compared with baseline, quality of life declined after the operation but was restored within a year in both groups.


Neurology ◽  
2020 ◽  
Vol 95 (20 Supplement 1) ◽  
pp. S11.2-S11
Author(s):  
Katie Hunzinger ◽  
Katelyn Costantini ◽  
Charles Buz Swanik ◽  
Thomas A. Buckley

ObjectiveTo determine the relationship between exposure to repetitive head impacts (RHI) through collision sports prior to the age of 12 and quality of life measures in community rugby players.BackgroundIt is suggested that RHI incurred before age 12 may be associated with later life neurologic impairments. However, research on age of first exposure (AFE) to collision sports and psychological outcomes has not be explored in rugby, a sport which participants often continue in community settings beyond college.Design/MethodsIndividuals over 18 years old who currently or previously played contact rugby completed an online questionnaire. To assess quality of life and psychological status, participants completed the Brief-Symptoms Inventory 18 (BSI-18), Short Form 12 (SF-12), and Satisfaction with Life Survey (SWLS). Participants were dichotomized into AFE to collision sports (12); AFE to rugby was not used since most participated in other collision sports prior to rugby. Data were not normally distributed; therefore, a Mann-Whitney U test was performed to compare outcomes between AFE groups.Results1,037 rugby players (31.6 + 11.3 years, 59.1% male) participated in this study. There were no significant differences between AFE 12 groups on all outcomes: BSI-18 Somatization (U = 97,286, p = 0.307), BSI-18 Depression (U = 100,267, p = 0.778), BSI-18 Anxiety (U = 98,851, p = 0.531), SF-12 Physical (U = 94,413, p = 0.241), SF-12 Mental (U = 96,517, p = 0.512), SWLS (U = 98,866, p = 0.537). Mean scores for all outcomes were: BSI-18 Somatization (2.33 + 2.99), BSI-18 Depression (4.20 + 4.91), BSI-18 Anxiety (3.32 + 3.75), SF-12 Physical (52.40 + 7.25), SF-12 Mental (46.20 + 11.45), SWLS (24.86 + 6.31).ConclusionsConsistent with recent cohort studies, there was no observed difference on three common measures of psychological well-being and quality of life in rugby players based upon AFE to collision sports. However, later life potential consequences of RHI in rugby players remains to be elucidated.


2013 ◽  
Vol 13 (1) ◽  
pp. 11-18 ◽  
Author(s):  
Monika Kögler ◽  
Monika Brandstätter ◽  
Gian Domenico Borasio ◽  
Veronika Fensterer ◽  
Helmut Küchenhoff ◽  
...  

AbstractObjectives:Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention.We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness.Methods:Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0–10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up.Results:One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = −0.51, p < 0.001) as well as life satisfaction (r = 0.52, p < 0.001) were found. Mindfulness was a significant predictor of improvement in psychological distress, meaning in life and quality of life three months after the intervention. The EBT effects were partly mediated by mindfulness.Significance of results:Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.


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