Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study

ABSTRACTBackground: Quality of life (QOL) is frequently assessed in persons with dementia (PWD) through self- and/or proxy-report. Determinants of QOL ratings are multidimensional and may differ between patients and caregiver proxies. This study compared self- and proxy-reported QOL ratings in a population-based study of PWD and their caregivers, and examined the extent to which discrepancies in reports were associated with characteristics of the PWD.Methods: The sample consisted of 246 patient/caregiver dyads from the initial visit of the Cache County Dementia Progression Study, with both members of the dyad rating PWD QOL. PWD age, gender, cognitive impairment (Mini-Mental State Examination), neuropsychiatric symptoms (Neuropsychiatric Inventory; NPI), dementia severity (Clinical Dementia Rating), medical comorbidities (General Medical Health Rating), and functional impairment (Dementia Severity Rating Scale) were examined as correlates of self- and proxy-reported QOL ratings and the differences between the QOL reports.Results: Self- and proxy-reported PWD QOL ratings were only modestly correlated. Medical comorbidity was associated with self-report whereas NPI was associated with proxy-report. Dementia severity was associated with discrepancies in self- and proxy-report, with worse patient cognition associated with poorer proxy-reported QOL ratings.Conclusions: PWD self- and proxy-reported QOL ratings are associated with different variables. Discrepancies between PWD and caregiver perceptions of PWD QOL should be recognized, particularly in cases of more severe dementia.

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The impact of neuropsychiatric symptoms on caregiver distress and quality of life in persons with dementia in an Asian tertiary hospital memory clinic

International Psychogeriatrics ◽

10.1017/s1041610213001518 ◽

2013 ◽

Vol 25 (12) ◽

pp. 1991-1999 ◽

Cited By ~ 28

Author(s):

S. A. Khoo ◽

T. Y. Chen ◽

Y. H. Ang ◽

P. Yap

Keyword(s):

Quality Of Life ◽

Rating Scale ◽

Neuropsychiatric Symptoms ◽

Resource Planning ◽

Tertiary Hospital ◽

Caregiver Distress ◽

Memory Clinic ◽

Clinical Dementia Rating ◽

The Impact

ABSTRACTBackground:This study aims to determine the prevalence, profile, and severity of neuropsychiatric symptoms (NPS) across the dementia continuum and their relative impact on caregiver distress and quality of life (QoL) in persons with dementia (PWD).Method:Six hundred and sixty-seven PWD and their family caregivers presented to a memory clinic in a tertiary hospital across a 60-month period. Clinicians determined the dementia diagnosis and severity using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition and the Clinical Dementia Rating scale, respectively. The Neuropsychiatric Inventory Questionnaire was administered to assess NPS in PWD and the corresponding distress experienced by the caregiver. QoL for PWD (PWD-QoL) was assessed by the Quality of Life–Alzheimer's Disease scale.Results:Ninety-six percent of PWD presented with at least one NPS, 18% experiencing mild, 31% moderate, and 47% severe symptoms, respectively. While agitation (63.1%), apathy (61.8%), depression (55.5%), and irritability (55.5%) were the most common NPS; disinhibition (35.2%), hallucination (25.5%), and elation (14.2%) were the least common. NPS increased generally but differentially as dementia progressed and significantly predicted caregiver distress (ηp2 = 0.732, p < 0.0001) and PWD-QoL (ηp2 = 0.066, p < 0.0001). Factor analysis revealed two NPS clusters, disruptive and affective; the former exerting greater impact on caregiver distress and the latter on PWD-QoL.Conclusion:The results show a high prevalence of NPS which increase caregiver distress and negatively impact PWD-QoL. The differential profile of NPS across the dementia stages warrants stage-specific interventions and due consideration in resource planning and service design for PWD and their caregivers.

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Quality of life in Hungarian patients with cystic fibrosis

Orvosi Hetilap ◽

10.1556/oh.2013.29612 ◽

2013 ◽

Vol 154 (20) ◽

pp. 784-791 ◽

Cited By ~ 2

Author(s):

Réka Bodnár ◽

Klára Holics ◽

Rita Ujhelyi ◽

László Kádár ◽

Lajos Kovács ◽

...

Keyword(s):

Quality Of Life ◽

Cystic Fibrosis ◽

Self Report ◽

Clinical Severity ◽

Proxy Report ◽

Parent Proxy Report ◽

Multisystemic Disease ◽

Cystic Fibrosis Questionnaire ◽

Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

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Agreement between child self-report and parent proxy-report to evaluate Quality of Life in Children with Cancer

Psycho-Oncology ◽

10.1002/pon.828 ◽

2005 ◽

Vol 14 (2) ◽

pp. 125-134 ◽

Cited By ~ 124

Author(s):

Pi-Chen Chang ◽

Chao-Hsing Yeh

Keyword(s):

Quality Of Life ◽

Self Report ◽

Children With Cancer ◽

Proxy Report ◽

Parent Proxy Report ◽

Parent Proxy

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Depressive Symptoms, Pain, and Quality of Life among Patients with Nonalcohol-Related Chronic Pancreatitis

Pain Research and Treatment ◽

10.1155/2012/978646 ◽

2012 ◽

Vol 2012 ◽

pp. 1-5 ◽

Cited By ~ 7

Author(s):

Wendy E. Balliet ◽

Shenelle Edwards-Hampton ◽

Jeffery J. Borckardt ◽

Katherine Morgan ◽

David Adams ◽

...

Keyword(s):

Quality Of Life ◽

Chronic Pancreatitis ◽

Depressive Symptoms ◽

Rating Scale ◽

Depression Scale ◽

Self Report ◽

Cross Sectional ◽

Depressive Symptomology ◽

The Mean

Objective. The present study was conducted to determine if depressive symptoms were associated with variability in pain perception and quality of life among patients with nonalcohol-related chronic pancreatitis. Methods. The research design was cross-sectional, and self-report data was collected from 692 patients with nonalcohol-related, intractable pancreatitis. The mean age of the sample was 52.6 (); 41% of the sample were male. Participants completed the MOS SF12 Quality of Life Measure, the Center for Epidemiological Studies 10-item Depression Scale (CESD), and a numeric rating scale measure of “pain on average” from the Brief Pain Inventory. Results. Depressive symptoms were significantly related to participants’ reports of increased pain and decreased quality of life. The mean CESD score of the sample was 10.6 () and 52% of the sample scored above the clinical cutoff for the presence of significant depressive symptomology. Patients scoring above the clinical cutoff on the depression screening measure rated their pain as significantly higher than those below the cutoff () and had significantly lower physical quality of life () and lower mental quality of life (). Conclusion. Although causality cannot be determined based on cross-sectional, correlational data, findings suggest that among patients with nonalcoholic pancreatitis, the presence of depressive symptoms is common and may be a risk factor associated with increased pain and decreased quality of life. Thus, routine screening for depressive symptomology among patients with nonalcoholic pancreatitis may be warranted.

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Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study

BJPsych Open ◽

10.1192/bjpo.bp.117.005181 ◽

2017 ◽

Vol 3 (4) ◽

pp. 171-178 ◽

Cited By ~ 34

Author(s):

Gill Livingston ◽

Julie Barber ◽

Louise Marston ◽

Penny Rapaport ◽

Deborah Livingston ◽

...

Keyword(s):

Quality Of Life ◽

Care Home ◽

Cross Sectional Study ◽

Care Homes ◽

Clinical Dementia Rating ◽

Cross Sectional ◽

Random Effects Models ◽

Dementia Severity ◽

Clinically Significant

BackgroundAgitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia.AimsTo report, in a large care home survey, prevalence and determinants of agitation in residents with dementia.MethodWe interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score.ResultsOut of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91).ConclusionsCare home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing.

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Health-related Quality of Life Profile of Indonesian Children and Its Determinants: a Community-based Study

10.21203/rs.3.rs-824073/v1 ◽

2021 ◽

Author(s):

Mei Neni Sitaresmi ◽

Braghmandita Widya Indraswari ◽

Nisrina Maulida Rozanti ◽

Zena Sabilatuttaqiyya ◽

Abdul Wahab

Keyword(s):

Quality Of Life ◽

Self Report ◽

Health Related Quality ◽

Community Based ◽

Proxy Report ◽

Proxy Reports ◽

Self Reports ◽

Related Quality ◽

Health Related

Abstract Background: Assessing health-related quality of life (HRQOL) and its determinants in children may provide a comprehensive view of child health. The study aimed to assess the HRQOL in Indonesian children and its determinants.Methods: We conducted a community-based cross-sectional study in the Sleman District of Yogyakarta Special Province, Indonesia, from August to November 2019. We recruited children aged 2 to 18 years old using the Sleman Health and Demography Surveillance System sample frame. We used the validated Indonesian version of Pediatric Quality of life InventoryTM (Peds QLTM) 4.0 Generic core scale, proxy-reports, and self-reports, to assess the HRQOL. Results: We recruited 633 proxies and 531 children aged 2-18 years. The mean total score of self-report and proxy-report were 89.9+ 8.5 and 93.3+6.4. There was a fair to moderate correlation between self-reports and proxy reports, with interclass correlation ranging from 0.34 to 0.47, all p<0.001. Half of the children (49.4% from proxy-report and 50.1% from self-report) reported having acute illness during the last month. Based on proxy-reports, multivariate regression analysis demonstrated lower HRQOL for children with acute health problems, younger age, history of low birth weight, abnormal delivery, lower fathers' educational level, and government-paid insurance for low-income families.Conclusion: In addition to sociodemographic determinants of a child's HRQOL, children’s health condition influences HRQOL in the general pediatric population. In low- and middle-income countries where acute infections and low birth weight are still prevalent, its prevention and appropriate interventions should improve child health.

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Quality of life and distress assessed with self and external assessment screening tools in patients with hematologic malignancies attending treatment in an acute hospital

Quality of Life Research ◽

10.1007/s11136-020-02602-6 ◽

2020 ◽

Vol 29 (12) ◽

pp. 3375-3385

Author(s):

Bianca Senf ◽

Kirsten Grabowski ◽

Natascha Spielmann ◽

Jens Fettel

Keyword(s):

Quality Of Life ◽

Rating Scale ◽

Hematologic Malignancies ◽

Self Report ◽

Screening Tools ◽

University Hospital ◽

Screening Instruments ◽

Treatment Needs ◽

Close Link

Abstract Purpose In this study, we examined distress levels and quality of life (QoL) of patients with hematologic malignancies under treatment in an acute setting. We used external- and self-assessment instruments for distress. Additionally, we investigated the relation between distress and QoL as well as whether highly distressed patients differed from less distressed patients concerning their QoL. Methods A cross-sectional study with patients of the Medical Clinic II of the University Hospital Frankfurt was conducted. One hundred and nine patients were assessed with an expert rating scale and completed self-report questionnaires. Data were exploratively analyzed and group comparisons between patients who scored above the cut-off of the respective screening instruments and those who did not were conducted. Results Patients with hematologic malignancies experience high levels of distress and low QoL. Especially, role and social functioning are affected. Patients suffer most from fatigue, appetite loss, and insomnia. Using established cut-offs, all screening instruments were able to differentiate between patients regarding distress and QoL. Patients scoring above the cut-off were significantly more distressed and had a lower QoL. There was a medium-to-strong correlation between distress and QoL indicators. Conclusion Cancer-specific screening instruments seem to be able to identify treatment needs more specifically. They also allowed a better differentiation concerning QoL. The close link between distress and QoL needs to be recognized to enable a holistic approach to treatment and thereby optimize the quality of treatment.

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The Reliability and Validity of the Norwegian Version of the Quality of Life in Late-Stage Dementia Scale

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000437093 ◽

2015 ◽

Vol 40 (3-4) ◽

pp. 233-242 ◽

Cited By ~ 13

Author(s):

Irene Røen ◽

Geir Selbæk ◽

Øyvind Kirkevold ◽

Knut Engedal ◽

Anners Lerdal ◽

...

Keyword(s):

Quality Of Life ◽

Late Stage ◽

Rating Scale ◽

Strong Association ◽

Nursing Home Residents ◽

Reliability And Validity ◽

Clinical Dementia Rating ◽

Norwegian Version ◽

Test Retest Reliability

Aim: To translate the Quality of Life in Late-Stage Dementia (QUALID) Scale into Norwegian, and to evaluate the test-retest reliability and validity of the scale. Method: QUALID was translated according to standardised procedures. Residents with dementia living in nursing homes were included in the study and assessed using QUALID, Cornell Scale for Depression in Dementia, Neuropsychiatric Inventory, Physical Self-Maintenance Scale and Clinical Dementia Rating Scale. Results: Cronbach's α of QUALID was 0.79. In the reliability study, the intra-class correlation was 0.83. The validity study showed a strong association between depressive symptoms and QUALID, and a moderate association between QUALID and assessments of level of functioning and agitation. Conclusions: The Norwegian version of QUALID is a reliable and valid scale for assessing quality of life in nursing home residents with dementia.

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Comparison of Patient and Proxy Reporting of Health-Related Quality of Life in Adolescent Athletes Who Suffer a Sports-Related Injury and Require Orthopedic Consultation

Journal of Sport Rehabilitation ◽

10.1123/jsr.22.4.248 ◽

2013 ◽

Vol 22 (4) ◽

pp. 248-253 ◽

Cited By ~ 4

Author(s):

Alison R. Snyder Valier ◽

Elizabeth M. Swank ◽

Kenneth C. Lam ◽

Matthew L. Hansen ◽

Tamara C. Valovich McLeod

Keyword(s):

Quality Of Life ◽

Self Report ◽

Health Related Quality ◽

Adolescent Athletes ◽

Proxy Report ◽

Outcome Measurements ◽

Related Quality ◽

Health Related ◽

Parent Proxy

Context:Accurate assessment of health-related quality of life (HRQoL) is important for quality patient care. Evaluation of HRQoL typically occurs with patient self-report, but some instruments, such as the Pediatric Quality of Life Inventory (PedsQL), allow for proxy reporting. Limited information exists comparing patient and proxy reports of HRQoL after sport-related injury in adolescent athletes.Objective:To compare patient ratings and parent-proxy ratings of HRQoL in adolescent athletes who suffer musculoskeletal injuries requiring orthopedic consultation. The authors hypothesized poor agreement between patient and parent-proxy ratings of HRQoL.Design:Cross-sectional study.Setting:Orthopedic practice.Patients:Thirteen adolescent patients with a sport-related musculoskeletal injury requiring orthopedic consultation and 1 of their parents participated.Interventions:During the initial visit to the physician’s office, each patient was asked to complete the PedsQL, and the patient’s parent was asked to complete the parent-proxy version of the PedsQL.Main Outcome Measurements:The PedsQL is a pediatric generic outcome measure that consists of a total score and 4 subscale scores: physical, emotional, social, and school functioning. Means and standard deviations were calculated for all scores, and comparisons between patient-self report and parent-proxy ratings of HRQoL were made for the PedsQL total score and subscale scores using Pearson product–moment correlations (r).Results:Pearson product–moment correlations showed little to fair insignificant relationships between patient self-report and parent-proxy report of the PedsQL for the total score (r = −.1) and all subscales (range r = .1 to .4).Conclusions:Our results suggest a lack of agreement between patient and parent-proxy ratings of HRQoL, with patients rating their HRQoL lower than their parent. Patient perception of HRQoL may be more accurate than proxy report, which supports the use of patient-rated HRQoL in patient evaluation. Assessments of HRQoL made by proxies, even those close to the patient, may not represent patient health status.

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