Dementia-specific quality of life instruments: a conceptual analysis

2016 ◽  
Vol 28 (8) ◽  
pp. 1245-1262 ◽  
Author(s):  
P. Missotten ◽  
G. Dupuis ◽  
S. Adam
Keyword(s):  
Quality Of Life ◽  
Conceptual Analysis ◽  
Conceptual Frameworks ◽  
The Past ◽  
People With Dementia ◽  
Health Related Qol ◽  
Health Related ◽  
Quality Of Life Instruments ◽  
Over Time

ABSTRACTBackground:Over the past 20 years, many researchers have worked in developing various methods for measuring quality of life (QoL) of people with dementia. The aim of this review is to develop the conceptual frameworks of the dementia-specific QoL instruments, to identify their evolution over time and to provide elements of reflection on the QoL concept in dementia and its evaluation.Methods:An electronic search was conducted on PsycINFO and MEDLINE databases, from January 1985 to June 2015 using a combination of key words that include QoL, dementia, and review.Results:The analysis of the conceptual frameworks of the 18 selected dementia-specific QoL tools shows a great diversity in: (1) the QoL definitions (e.g. health-related QoL definitions, QoL definitions based on Lawton's work, or similar to this latter); (2) the theoretical QoL models (e.g. Lawton’ work and modified Lawton, adaptation, personhood); (3) the domains and dimensions; (4) the way to construct the instrument (e.g. development based on literature, opinion of the experts), and (5) the items’ formulation (e.g. use of criterion of intensity or frequency).Conclusions:There are different conceptual frameworks in the dementia-specific QoL measures with improvements over time (e.g. inclusion of interesting concepts such as adaptation, taking into account the views of patients themselves). Each of the conceptual parameters (definitions, models, domains, and dimensions) is discussed to identify the scales that are conceptually the strongest. Through their review, recommendations for future instrument refinement and development are discussed and a new QoL definition is proposed.

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

360 Efficacy of CBT-I and its Components on Health-Related Quality of Life Outcomes in Older Adults

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A143-A144
Author(s):  
Kelly Showen ◽  
Kathleen O’Hora ◽  
Beatriz Hernandez ◽  
Laura Lazzeroni ◽  
Jamie Zeitzer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Older Adults ◽  
Health Related Quality ◽  
Health Related Qol ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Over Time

Abstract Introduction Insomnia affects 30–48% of older adults and impairs health-related quality of life (HRQoL). Numerous studies report Cognitive Behavioral Therapy (CBT-I) as an effective non-pharmacological treatment for insomnia symptoms, with few examining the impact of CBT-I on mental and physical aspects of HRQoL. While limited research suggests that CBT-I leads to improvements in HRQoL, the impact of the cognitive versus behavioral components of CBT-I on HRQoL is unknown. Methods 128 older adults with insomnia (mean age=69, 66% female, 19% minority) were randomized to receive cognitive therapy (CT), behavior therapy (BT), or CBT-I. The Short Form (36) Health Survey (SF-36) was collected at baseline, post-treatment and six-month follow-up. Split-plot linear mixed models with age and sex as covariates to assess within and between subject changes were used to test intervention, time, and interaction effects on the mental health and physical well-being domains of HRQoL. Significance for all effects was defined as p < 0.05. The effect size (d) was calculated by dividing the difference between means by the root-mean-squared error of the mixed effects model. Results The mental health-related QoL improved over time independent of treatment (Main effect of time: F(2, 202) = 6.51, p < 0.002). The interaction failed to reach significance (Interaction: F(4, 202) = 1.19, p = .31). Simple effects revealed significant improvements among CBT-I participants at six months (p = .02, d = .53) and CT participants at post-treatment (p = .00, d = .79) and six months (p = .03, d = .66), but not among BT participants for either time point (p = .32, d = .24; p = .16, d = .35). Treatment did not improve physical health-related QoL over time (F(2, 202) = 1.01, p = .37) nor was there a significant interaction (F(4, 202) = .46, p = .76). Conclusion These findings suggest that CBT-I, particularly the CT component, may be effective in improving mental health-related QoL outcomes for older adults with insomnia. In contrast, neither CBT-I nor its component treatments were effective in improving physical health-related QoL. Support (if any) NIMHR01MH101468-01; Mental Illness Research, Education, and Clinical Center (MIRECC) at the VAPAHCS

Depression and Quality of Life in Older Persons: A Review

2015 ◽  
Vol 40 (5-6) ◽  
pp. 311-339 ◽  
Author(s):  
Heidi Sivertsen ◽  
Guro Hanevold Bjørkløf ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Anne-Sofie Helvik
Keyword(s):  
Quality Of Life ◽  
Older Persons ◽  
Assessment Instruments ◽  
Cross Sectional ◽  
Health Related Qol ◽  
Health Related ◽  
Definition Of ◽  
The Relationship ◽  
Over Time

Background: Depression is a prevalent and disabling condition in older persons (≥60 years) that increases the risk of mortality and negatively influences quality of life (QOL). The relationship between depression, or depressive symptoms, and QOL has been increasingly addressed by research in recent years, but a review that can contribute to a better understanding of this relationship in older persons is lacking. Against this background, we undertook a literature review to assess the relationship between depression and QOL in older persons. Summary: Extensive electronic database searches revealed 953 studies. Of these, 74 studies fulfilled our criteria for inclusion, of which 52 were cross-sectional studies and 22 were longitudinal studies. Thirty-five studies were conducted in a clinical setting, while 39 were community-based epidemiological studies. A clear definition of the QOL concept was described in 25 studies, and 24 different assessment instruments were employed to assess QOL. Depressed older persons had poorer global and generic health-related QOL than nondepressed individuals. An increase in depression severity was associated with a poorer global and generic health-related QOL. The associations appeared to be stable over time and independent of how QOL was assessed. Key Messages: This review found a significant association between severity of depression and poorer QOL in older persons, and the association was found to be stable over time, regardless which assessment instruments for QOL were applied. The lack of a definition of the multidimensional and multilevel concept QOL was common, and the large variety of QOL instruments in various studies make a direct comparison between the studies difficult.

scholarly journals P139 What impact does JIA have on health-related quality of life over time and by gender?

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Child Health ◽  
Reference Population ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time ◽  
Domain Scores

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.

scholarly journals Quality of life in urologic cancer patients: importance of and satisfaction with specific quality of life domains

2021 ◽  
Author(s):  
Katja Leuteritz ◽  
Diana Richter ◽  
Anja Mehnert-Theuerkauf ◽  
Jens-Uwe Stolzenburg ◽  
Andreas Hinz
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Cancer Patients ◽  
Patient Group ◽  
Control Group ◽  
Health Related Qol ◽  
Health Related ◽  
Importance Ratings ◽  
Subjective Importance

Abstract Purpose Quality of life (QoL) has been the subject of increasing interest in oncology. Most examinations of QoL have focused on health-related QoL, while other factors often remain unconsidered. Moreover, QoL questionnaires implicitly assume that the subjective importance of the various QoL domains is identical from one patient to the next. The aim of this study was to analyze QoL in a broader sense, considering the subjective importance of the QoL components. Methods A sample of 173 male urologic patients was surveyed twice: once while hospitalized (t1) and once again 3 months later (t2). Patients completed the Questions on Life Satisfaction questionnaire (FLZ-M), which includes satisfaction and importance ratings for eight dimensions of QoL. A control group was taken from the general population (n = 477). Results Health was the most important QoL dimension for both the patient and the general population groups. While satisfaction with health was low in the patient group, the satisfaction ratings of the other seven domains were higher in the patient group than in the general population. The satisfaction with the domain partnership/sexuality showed a significant decline from t1 to t2. Multiple regression analyses showed that the domains health and income contributed most strongly to the global QoL score at t2 in the patient group. Conclusion Health is not the only relevant category when assessing QoL in cancer patients; social relationships and finances are pertinent as well. Importance ratings contribute to a better understanding of the relevance of the QoL dimensions for the patients.

scholarly journals Reliability of generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Children And Adolescents ◽  
Idiopathic Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Generic Quality ◽  
Quality Of Life Instruments

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.

Adult oral health‐related quality of life instruments: A systematic review

2021 ◽  
Author(s):  
Fedrico Riva ◽  
Mariana Seoane ◽  
Michael Eduardo Reichenheim ◽  
Georgios Tsakos ◽  
Roger Keller Celeste
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Oral Health ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments

scholarly journals Impact of malnutrition on health-related quality of life in persons receiving dialysis: a prospective study

2021 ◽  
pp. 1-24
Author(s):  
Daniela Viramontes-Hörner ◽  
Zoe Pittman ◽  
Nicholas M Selby ◽  
Maarten W Taal
Keyword(s):  
Quality Of Life ◽  
Prospective Study ◽  
Health Related Quality ◽  
Poor Hrqol ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Over Time

Abstract Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.

scholarly journals Health-related quality of life of early-stage breast cancer patients after different radiotherapy regimens

2021 ◽  
Author(s):  
Daphne H. M. Jacobs ◽  
Ramona K. Charaghvandi ◽  
Nanda Horeweg ◽  
John H. Maduro ◽  
Gabrielle Speijer ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Early Stage ◽  
Early Stage Breast Cancer ◽  
Breast Irradiation ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Abstract Purpose To evaluate and compare health-related quality of life (HRQL) of women with early-stage breast cancer (BC) treated with different radiotherapy (RT) regimens. Methods Data were collected from five prospective cohorts of BC patients treated with breast-conserving surgery and different RT regimens: intraoperative RT (IORT, 1 × 23.3 Gy; n = 267), external beam accelerated partial breast irradiation (EB-APBI, 10 × 3.85 Gy; n = 206), hypofractionated whole breast irradiation(hypo-WBI, 16 × 2.67 Gy; n = 375), hypo-WBI + boost(hypo-WBI-B, 21–26 × 2.67 Gy; n = 189), and simultaneous WBI + boost(WBI-B, 28 × 2.3 Gy; n = 475). Women ≥ 60 years with invasive/in situ carcinoma ≤ 30 mm, cN0 and pN0-1a were included. Validated EORTC QLQ-C30/BR23 questionnaires were used to asses HRQL. Multivariable linear regression models adjusted for confounding (age, comorbidity, pT, locoregional treatment, systemic therapy) were used to compare the impact of the RT regimens on HRQL at 12 and 24 months. Differences in HRQL over time (3–24 months) were evaluated using linear mixed models. Results There were no significant differences in HRQL at 12 months between groups except for breast symptoms which were better after IORT and EB-APBI compared to hypo-WBI at 12 months (p < 0.001). Over time, breast symptoms, fatigue, global health status and role functioning were significantly better after IORT and EB-APBI than hypo-WBI. At 24 months, HRQL was comparable in all groups. Conclusion In women with early-stage breast cancer, the radiotherapy regimen did not substantially influence long-term HRQL with the exception of breast symptoms. Breast symptoms are more common after WBI than after IORT or EB-APBI and improve slowly until no significant difference remains at 2 years posttreatment.

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