Measuring health-related quality of life of care home residents: comparison of self-report with staff proxy responses

IntroductionResearch into interventions to improve health and well-being for older people living in care homes is increasingly common. Health-related quality of life (HRQoL) is frequently used as an outcome measure, but collecting both self-reported and proxy HRQoL measures is challenging in this setting. This study will investigate the reliability of UK care home staff as proxy respondents for the EQ-5D-5L and HowRu measures.Methods and analysisThis is a prospective cohort study of a subpopulation of care home residents recruited to the larger Proactive Healthcare for Older People in Care Homes (PEACH) study. It will recruit residents ≥60 years across 24 care homes and not receiving short stay or respite care. The sample size is 160 participants. Resident and care home staff proxy EQ-5D-5L and HowRu responses will be collected monthly for 3 months. Weighted kappa statistics and intraclass correlation adjusted for clustering at the care home level will be used to measure agreement between resident and proxy responses. The extent to which staff variables (gender, age group, length of time caring, role, how well they know the resident, length of time working in care homes and in specialist gerontological practice) influence the level of agreement between self-reported and proxy responses will be considered using a multilevel mixed-effect regression model.Ethics and disseminationThe PEACH study protocol was reviewed by the UK Health Research Authority and University of Nottingham Research Ethics Committee and was determined to be a service development project. We will publish this study in a peer-reviewed journal with international readership and disseminate it through relevant national stakeholder networks and specialist societies.

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The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽

10.32895/ump.mpr.1.1.9/suffix ◽

2017 ◽

Vol 1 (1) ◽

pp. 9-14

Author(s):

Tri Doan ◽

Tuan Tran ◽

Han Nguyen ◽

◽

...

Keyword(s):

Quality Of Life ◽

Good Practice ◽

The Self ◽

Self Report ◽

Health Related Quality ◽

Life Measure ◽

Related Quality ◽

Health Related ◽

Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

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A history of health-related quality of life outcomes in psychiatry

Dialogues in Clinical Neuroscience ◽

10.31887/dcns.2014.16.2/drevicki ◽

2014 ◽

Vol 16 (2) ◽

pp. 127-135 ◽

Cited By ~ 13

Keyword(s):

Quality Of Life ◽

Psychiatric Patients ◽

Clinical Care ◽

Self Report ◽

Psychiatric Research ◽

Health Related Quality ◽

Patient Centered ◽

Related Quality ◽

Health Related

Health-related quality of life (HRQoL) is a multidimensional concept that includes subjective reports of symptoms, side effects, functioning in multiple life domains, and general perceptions of life satisfaction and quality. Rather than estimating it from external observations, interview, or clinical assessment, it is best measured by direct query. Due to a perception that respondents may not be reliable or credible, there has been some reluctance to use self-report outcomes in psychiatry. More recently, and increasingly, HRQoL assessment through direct patient query has become common when evaluating a range of psychiatric, psychological, and social therapies. With few exceptions, psychiatric patients are credible and reliable reporters of this information. This article summarizes studies that highlight the development, validation, and application of HRQoL measures in psychiatry. Thoughtful application of these tools in psychiatric research can provide a much-needed patient perspective in the future of comparative effectiveness research, patient-centered outcomes research, and clinical care.

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Impact of long-COVID on health-related quality of life in Japanese COVID-19 patients

10.1101/2021.09.27.21264225 ◽

2021 ◽

Author(s):

Shinya Tsuzuki ◽

Yusuke Miyazato ◽

Mari Terada ◽

Shinichiro Morioka ◽

Norio Ohmagari ◽

...

Keyword(s):

Quality Of Life ◽

Disease Burden ◽

Self Report ◽

Health Related Quality ◽

Cross Sectional ◽

Long Duration ◽

Related Quality ◽

Health Related ◽

Basic Characteristics

AbstractBackgroundThe empirical basis for a quantitative assessment of the disease burden imposed by long-COVID is currently scant. We aimed to assess the disease burden caused by long-COVID in Japan.MethodsWe conducted a cross sectional self-report questionnaire survey. The questionnaire was mailed to 530 eligible patients, who were recovered from acute COVID-19 in April 2021. Answers were classified into two groups; participants who have no symptom and those who have any ongoing symptoms that lasted longer than four weeks at the time of the survey. We compared health-related quality of life scores estimated by the EQ-5D-3L questionnaire between these two groups after adjusting basic characteristics of the participants by propensity score matching.Results349 participants reported no symptoms and 108 reported any symptoms at the time of the survey. The participants who reported any symptoms showed a lower value on a Visual Analogue Scale (median 70 [IQR 60-80]) and on the EQ-5D-3L (median 0.81 [IQR 0.77-1.0]) than those reporting no symptoms (median 85 [IQR 75-90] and 1.0 [IQR 1.0-1.0], respectively). After adjusting for background characteristics, these trends did not change substantially (Visual Analog Scale: median 70 [IQR 60-80] vs 80 [IQR 77-90], EQ-5D-3L: median 0.81 [IQR 0.76-1.0] vs 1.0 [IQR 1.0-1.0]).ConclusionsDue to their long duration, long-COVID symptoms represent a substantial disease burden expressed in impact on health-related quality of life.Trial registrationNot applicable.

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Perbandingan Self-Report dengan Caregiver-Report mengenai Health-Related Quality of Life Anak dengan Talasemia Mayor Usia 8-12 Tahun

Indonesian Journal of Clinical Pharmacy ◽

10.15416/ijcp.2021.10.1.50 ◽

2021 ◽

Vol 10 (1) ◽

pp. 50

Author(s):

Putu G. P. R. Mudita ◽

Fredrick D. Purba ◽

Aulia Iskandarsyah

Keyword(s):

Quality Of Life ◽

Self Report ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Caregiver Report

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P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2018.174 ◽

2018 ◽

Vol 45 (s2) ◽

pp. S35-S35

Author(s):

S Brar ◽

C Campbell ◽

E McColl ◽

W Martens ◽

M McDermott ◽

...

Keyword(s):

Quality Of Life ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Self Report ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Parent Proxy ◽

Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

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Role of Health-Related Quality of Life in Palliative Chemotherapy Treatment Decisions

Journal of Clinical Oncology ◽

10.1200/jco.2002.20.4.1056 ◽

2002 ◽

Vol 20 (4) ◽

pp. 1056-1062 ◽

Cited By ~ 26

Author(s):

S. B. Detmar ◽

M. J. Muller ◽

J. H. Schornagel ◽

L. D.V. Wever ◽

N. K. Aaronson

Keyword(s):

Quality Of Life ◽

Tumor Progression ◽

Palliative Chemotherapy ◽

Treatment Decisions ◽

Self Report ◽

Health Related Quality ◽

Discontinuation Of Treatment ◽

Related Quality ◽

Health Related

PURPOSE: To determine the frequency with which health-related quality-of-life (HRQL) considerations lead to modification or discontinuation of palliative chemotherapy, and the association between physicians’ ratings of patients’ HRQL and such treatment decisions. METHODS: Four consecutive medical consultations of 203 patients receiving outpatient palliative chemotherapy were tape-recorded and the content was analyzed to determine the frequency of and reasons for treatment alterations. Physicians rated their patients’ HRQL by using the COOP/WONCA health assessment charts. Data on tumor response and treatment toxicity were obtained from the audiotapes and, when necessary, were confirmed by medical chart audits. RESULTS: Treatment was modified in 54 cases (26%) and discontinued in 40 (20%). The primary reasons for modifying treatment were toxicity (n = 22), HRQL considerations (n = 18), and tumor progression (n = 14). The primary reasons for discontinuation of treatment were tumor progression (n = 23), HRQL considerations (n = 6), and toxicity (n = 3). For eight patients, a combination of tumor progression and HRQL issues resulted in discontinuation of treatment. Treatment decisions were associated significantly with physicians’ global ratings of patients’ HRQL but not with more specific HRQL domains. In the presence of tumor progression or serious toxicity, HRQL considerations played little or no role in treatment decisions. Furthermore, approximately 70% of patients without evidence of tumor progression or toxicity, but with seriously impaired HRQL, continued to receive their treatment as planned. CONCLUSION: Contrary to previous findings based on physicians’ self-report data, HRQL considerations seem to play a relatively minor role in decisions regarding modification or discontinuation of palliative chemotherapy.

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Health-related Quality of Life of Older Women Religious: Negative Influence of Frailty

Western Journal of Nursing Research ◽

10.1177/0193945920936171 ◽

2020 ◽

Vol 42 (12) ◽

pp. 1088-1096

Author(s):

Amy B. Petrinec ◽

Mary Lind Crowe ◽

Sr. Kathleen Flanagan ◽

Janet Baker

Keyword(s):

Quality Of Life ◽

Social Support ◽

Older Women ◽

Women Religious ◽

Blood Pressure Measurement ◽

Self Report ◽

Health Related Quality ◽

Related Quality ◽

Health Related

The purpose of the current study was to describe the health-related quality of life (HRQOL) of older women religious (WR) and examine variables that may influence HRQOL. The sample consisted of WR, 65 years or older, living in the Cleveland Catholic Diocese. The participants completed a medical history, body-mass index (BMI) and blood pressure measurement, and self-report measures of HRQOL, frailty, social support, resilience, and depression. The study sample was composed of 108 older WR with a mean age of 75.6 (range 65–93 years). The women reported high levels of daily functioning, resilience, and social support, with low levels of depression. WR describe a relatively high level of HRQOL. Frailty was an independent negative predictor of HRQOL in all subscales except general health. Resilience and fear of falling had significant effects on several HRQOL subscales.

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Breast cancer nursing interventions and clinical effectiveness: a systematic review

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-002120 ◽

2020 ◽

Vol 10 (3) ◽

pp. 276-286

Author(s):

Raymond Javan Chan ◽

Laisa Teleni ◽

Suzanne McDonald ◽

Jaimon Kelly ◽

Jane Mahony ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Symptom Burden ◽

Risk Of Bias ◽

Self Report ◽

Self Management ◽

Health Related Quality ◽

Related Quality ◽

Health Related

ObjectivesTo examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast cancer.MethodsCochrane Controlled Register of Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Embase databases were searched (January 1999 to May 2019) to identify randomised controlled trials (RCTs) and controlled before-and-after studies of interventions delivered by nurses with oncology experience for women with breast cancer. Risk of bias was evaluated using the revised Cochrane risk-of-bias tool for randomised trials. Intervention effects were synthesised by cancer trajectory using The Omaha System Intervention Classification Scheme.ResultsThirty-one RCTs (4651 participants) were included. All studies were at risk of bias mainly due to inherent limitations such as lack of blinding and self-report data. Most studies (71%; n=22) reported at least one superior intervention effect. There were no differences in all outcomes between those who receive nurse-led surveillance care versus those who received physical led or usual discharge care. Compared with control interventions, there were superior teaching, guidance and counselling (63%) and case management (100%) intervention effects on symptom burden during treatment and survivorship. Effects of these interventions on health-related quality of life and symptom self-management/behavioural outcomes were inconsistent.DiscussionThere is consistent evidence from RCTs that nurse-led surveillance interventions are as safe and effective as physician-led care and strong evidence that nurse-led teaching, guidance and counselling and case management interventions are effective for symptom management. Future studies should ensure the incorporation of health-related quality of life and self-management/behavioural outcomes and consider well-designed attentional placebo controls to blind participants for self-report outcomes.Protocol registrationThe International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).

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