Measuring the health-related quality of life (HRQoL) of young children in resource-limited settings: a review of existing measures

Purpose

This review sought to identify and summarize the instruments adapted or developed for measuring HRQoL among young children (<8 years) living in resource-limited settings.

Methods

A review of the literature was conducted in two phases. Phase one searched the PubMed, PsycInfo, Web of Knowledge (Web of Science), African Index Medicus, and SocINDEX databases and identified widely used child HRQoL instruments. Phase two reviewed the articles using the selected HRQoL instruments and extracted information on their use in resource-limited settings including adaption processes.

Results

Seven instruments were identified that measured the HRQoL of young children. Six had been used in resource-limited settings. Of the 452 articles using these instruments, a total of 23 (5 %) studies used one of the identified HRQoL instruments in a resource-limited setting. Among these studies, 39 % employed an adaptation process for the use of that instrument. No instruments had been developed specifically for measuring the HRQoL of young children in resource-limited settings.

Conclusions

If pediatric HRQoL instruments are to be used in resource-limited settings, it is critical that they be developed and adequately adapted to those settings. Only then will interventions lead to larger increases in the overall HRQoL and well-being of children.     

Measuring health related quality of life among women living with HIV

Although women had been under recognized in the literature on HIV/AIDS, increasing numbers of studies have focused on the lives and experiences of women living with HIV/AIDS. Areas of research in which the study of women and HIV continues to be noticeably lacking include health related quality of life (HRQOL). This paper describes HRQOL in an inner city sample of 287 HIV positive non-pregnant women, interviewed as part of a larger multi-site CDC funded study of the reproductive health of women. The average age of the respondents was 33 years and women had known their HIV status an average of 41 months. HRQOL was assessed using a 17-item modified version of the Medical Outcomes Study-HIV Health Survey and demonstrated acceptable internal consistency (0.64-0.89) and variability. Women in our study were similar to other HIV-positive female samples and reported lower levels of well-being and functioning than some HIV-positive male samples. Women's responses to individual items and areas of potential need for health care are discussed. Examination of HRQOL in women with HIV can aid in the comparison of how women and men are affected by HIV and can help health care professionals identify needed services and include possible interventions to promote quality of life. This revised version was published online in June 2006 with corrections to the Cover Date.     

Reliability of the interRAI suite of assessment instruments: a 12-country study of an integrated health information system

Background  

A multi-domain suite of instruments has been developed by the interRAI research collaborative to support assessment and care planning in mental health, aged care and disability services. Each assessment instrument comprises items common to other instruments and specialized items exclusive to that instrument. This study examined the reliability of the items from five instruments supporting home care, long term care, mental health, palliative care and post-acute care.     

Proxy reliability: Health-related quality of life (HRQoL) measures for people with disability

Objectives: Research and surveillance activities sometimes require that proxy respondents provide key exposure or outcome information, especially for studies of people with disability (PWD). In this study, we compared the health-related quality of life (HRQoL) responses of index PWD to proxies. Methods: Subjects were selected from nursing home, other assisted living residences, and from several clinic samples of PWD. Each index identified one or more proxy respondents. Computer-assisted interviews used a random order of measures. Proxy reliability was measured by intraclass correlation (ICC) and κ statistics. HRQoL measures tested included the surveillance questions of the Behavioral Risk Factor Surveillance System (BRFSS), basic and instrumental activities of daily living (ADLs and IADLs), medical outcomes study short-form 36 and 12 (SF-36 and SF-12). Results: A total of 131 index-proxy sets were completed. In general, agreement and reliability of proxy responses to the PWD tended to be best for relatives, with friends lower, and health care proxies lowest. For example, the ICC for the physical functioning scale of the SF-36 was 0.68 for relatives, 0.51 for friends, and 0.40 for healthcare proxies. There was a tendency for proxies to overestimate impairment and underestimate HRQoL. This pattern was reversed for measures of pain, which proxies consistently underestimated. The pattern among instruments, proxy types, and HRQoL domains was complex, and individual measures vary from these general results. Conclusions: We suggest caution when using proxy respondents for HRQoL, especially those measuring more subjective domains. This revised version was published online in June 2006 with corrections to the Cover Date.     

Measuring quality of care: considering measurement frameworks and needs assessment to guide quality indicator development

ObjectiveIn this article, we describe one approach for evaluating the value of developing quality indicators (QIs).Study Design and SettingWe focus on describing how to develop a conceptual measurement framework and how to evaluate the need to develop QIs. A recent process to develop QIs for injury care is used for illustration.ResultsKey steps to perform before developing QIs include creating a conceptual measurement framework, determining stakeholder perspectives, and performing a QI needs assessment. QI development is likely to be most beneficial for medical problems for which quality measures have not been previously developed or are inadequate and that have a large burden of illness to justify quality measurement and improvement efforts, are characterized by variable or substandard care such that opportunities for improvement exist, and have evidence that improving quality of care will improve patient health.ConclusionBy developing a conceptual measurement framework and performing a QI needs assessment, developers and users of QIs can target their efforts.     

Factors associated with health-related quality of life (HRQoL): differential patterns depending on age

Quality of Life Research - The aims of this study were: (1) to analyze age differences in health-related quality of life (HRQoL) between the young old (aged 65–84) and the oldest old (aged 85...     

Measuring the quality of motivational interviewing in primary health care encounters: The development and validation of the motivational interviewing assessment scale (MIAS)

Background: Motivational interviewing (MI) is a collaborative, goal-oriented method to help patients change behaviour. Tools that are often used to measure MI are the motivational interviewing skills code' (MISC), the ‘motivational interviewing treatment integrity’ (MITI) and the ‘behaviour change counselling index’ (BECCI). The first two instruments have not been designed to be used in primary healthcare (PHC) settings. The BECCI actually is time-consuming. The motivational interviewing assessment scale (MIAS, 'EVEM' in Spanish) was developed to measure MI in PHC encounters as an alternative to the previous instruments.

Objectives: To validate MIAS as an instrument to assess the quality of MI in PHC settings.

Methods: (a) Development: Sixteen experts in MI participated in the design, face and consensus validity, using a Delphi-type methodology. (b) Validation: Setting: 27 PHC centres located in Spain. Subjects: four experts in MI tested its psychometric properties with 332 video recordings coming from the Dislip-EM study (consultations provided by 37 practitioners). Measurements: dimensionality, internal consistency, reliability (intra-class correlation coefficient—ICC), sensitivity to change and convergent validity with the BECCI scale.

Results: A 14-item scale was obtained after the validation process. Factor analysis: two factors explained 76.6% of the total variance. Internal consistency, α?=?0.99. Reliability: intra-rater ICC?=?0.96; inter-rater ICC?=?0.97. Sensitivity to change: means before and after training were 23.63 versus 38.57 (P?P?Conclusion: The MIAS is a consistent and reliable instrument to assess the use of MI in PHC settings.

Key Messages

• The motivational interviewing assessment scale is a valid tool to assess motivational interviewing skills in physicians.

• It has been tested in a wide variety of clinical situations in primary healthcare settings and can also be used as a tool for evaluation of training.

     

Health-related quality of life (HRQoL) in patients with cancer and other concurrent illnesses

This study analyzed the impact of eight common chronic medical conditions on cancer patients' health-related quality of life (HRQoL) as measured by the functional living index-cancer (FLIC). The FLIC was administered to a population of 405 people in 14 communities in the North Central US within 4-8 weeks of diagnosis with breast or colorectal cancer. At that time, patients also self-reported any other health conditions for which they had been receiving medical treatment. The impact of the selected chronic conditions on the FLIC scores was analyzed using Student's t-tests and linear multiple regression. In the bivariate analysis, patients with heart/circulation problems had lower FLIC total scores (p < 0.05), physical well-being subscale scores (p < 0.05), and nausea subscale scores (p < 0.01). Patients with diabetes had lower nausea subscale scores (p < 0.05). The social well-being subscale score was higher with the report of arthritis/joint problems (p = 0.001). In multivariate analysis adjusted for age, arthritis/joint problems were predictive of the social well-being (p < 0.01) and hardship due to cancer (p < 0.05) subscale scores; heart/circulation problems (p < 0.001) and diabetes were predictive of the nausea subscale scores. ECOG performance status was significant predictor for the FLIC total and all of the subscale scores. HRQoL as measured with the FLIC scores in patients with cancer is impacted by the presence of other concurrent health conditions; this finding has implications for HRQoL theory and application.     

Measuring the quality of life of cancer patients: psychometric properties of instruments

The importance of measuring the Quality of Life (QL) has become more and more apparent during the past 10 years. Traditionally, QL studies have investigated functional status and treatment side effects. In recent years more comprehensive instruments have been constructed to assess the QL of cancer patients. Most QL instruments take a certain degree of physical and psychological functioning into account as well as the level of activity and a global evaluation of life. The reliability and validity of these instruments are reviewed in this paper. Reliability has been well documented and seems satisfactory for most instruments. Only a few authors have discussed content validity. Predictive validity has also been established in most instances and the results from various studies are promising, however, the choice of criteria is seldom taken into account. It also seems difficult to draw conclusions about construct validity. In our view, the main problem is the lack of definitions and the absence of a theoretical framework. Therefore, some assumptions underlying QL research in cancer patients have been elucidated.     

First-generation versus third-generation comprehensive geriatric assessment instruments in the acute hospital setting: A comparison of the Minimum Geriatric Screening Tools (MGST) and the interRAI Acute Care (interRAI AC)

Objective  

Comparison of the first-generation Minimum Geriatric Screening Tools (MGST) and the third-generation interRAI Acute Care (interRAI AC).     

Development of indicators to assess quality of life within a community: the 2006 healthy community council assessment

The Healthy Community Council (HCC) is a group of numerous stakeholders that include both private and non-profit organizations that provide services to residents of the City of Harrisonburg and Rockingham County, located in the Shenandoah Valley of Virginia. The HCC was formed "to enhance the quality of life for the community through collaborative efforts of individuals, agencies, and institutions." One goal has been to assess the quality of life among residents in the City of Harrisonburg and Rockingham County. This article provides a framework and step-by-step process for developing quality of life indicators for a community assessment. The process of developing indicators to assess quality of life included: 1) establishing an assessment team; 2) reviewing assessments conducted in similar communities; 3) developing assessment categories (i.e., health, environment); 4) listing all possible indicators that would assess quality of life in a community; 5) prioritizing indicators; 6) finalizing the list of indicators for each assessment category; and 7) determining indicator type. The step-by-step process outlined resulted in the development of eight assessment categories and a total of 40 indicators to measure quality of life within the community. The method for developing the specific indicators to measure quality of life was essential in making the 2006 HCC Assessment a community-based participatory process.     

PACE EH post project assessment of quality of life changes in a Florida community related to infrastructure improvements

The Indian River county health department, environmental health division (IRCHD EH) in Florida implemented the Protocol for Assessing Community Excellence in Environmental Health (PACE EH) in the low-income community of West Wabasso, Florida. Over two and a half years, IRCHD EH worked with the community and various governmental agencies to bring much-needed improvements to the area. At the end of the two and a half years, a survey was conducted to discover if the residents' quality of life had increased due to the community's improvements. The survey results yielded high satisfaction rates among residents. The general response was that their feelings of safety and overall well-being attributed to infrastructure improvements in their community had increased significantly. An unforeseen benefit realized by all parties involved was a renewed trust in government. The majority of surveyed residents (91%) felt that governmental agencies were better able to respond to their issues.     

Measuring quality of life: the development and initial validation of the patient-reported erectile function assessment instrument

OBJECTIVES: Erectile dysfunction (ED) is a complex condition, which is variously influenced by physical, emotional, societal, and relationship factors. ED has serious implications for the quality of life (QoL) enjoyed by an affected male and his partner. It is very important, therefore, to understand the impact of ED on the QoL of those affected by it. Our objective was to determine if the eight-question Patient Reported Erectile Function Assessment (PREFA) could act as an independent, comprehensive disease-specific instrument in the assessment of QoL as it is impacted by ED. METHODS: During the development and validation of the Erectile Function-Visual Analog Scale (EF-VAS) (14), a new ED-specific preference-based instrument, a series of questions were included at the beginning of the assessment that would act as a way to encourage respondents to focus on their own experience with ED. Upon analysis of the EF-VAS data, it became apparent that the eight-question "warm up" section might act as a stand-alone assessment. Accordingly, the eight questions were named PREFA, and a validation analysis was undertaken to determine their consistency, feasibility, reliability, validity, and responsiveness. RESULTS: The PREFA questionnaire was found to be feasible and simple to complete, reliable, and valid, with excellent responsiveness. Overall, the PREFA has demonstrated that it can perform as a stand alone, validated assessment of the impact of ED on QoL, assessing areas of QoL not previously captured in existing instruments. CONCLUSIONS: The PREFA is suitable for use in clinical and research settings as a disease-specific QoL assessment tool.     

Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments

Purpose

Patient-reported outcome measures (PROMs) are becoming increasingly important in clinical practice. The implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking. The aim of this study is to evaluate the quality of self-administered HRQoL measurement instruments for use in patients with advanced cancer in clinical practice.

Methods

A systematic literature search was performed in PubMed, Embase, PsycINFO, and CINAHL to identify studies concerning self-administered HRQoL measurement instruments in patients with advanced cancer between January 1990 and September 2016. Quality of the measurement instruments was assessed by predefined criteria derived from the COSMIN checklist.

Results

Sixty-nine articles relating to 39 measurement instruments met the inclusion criteria. Information regarding important measurement properties was often incomplete. None of the instruments performed sufficient on all measurement properties. Considering available information, the EORTC QLQ-C15-PAL appeared to have adequate psychometric properties, together with the EORTC QLQ-BM22.

Conclusions

Many of the existing HRQoL measurement instruments have not yet been evaluated in an adequate manner. Validation of self-administered HRQoL measurement instruments is an ongoing development and should be prioritized. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in clinical practice.

     

Feasibility of health-related quality of life (HRQoL) assessment for cancer patients using electronic patient-reported outcome (ePRO) in daily clinical practice

Quality of Life Research - Routine Electronic Monitoring of Health-Related Quality of Life (HRQoL) (REMOQOL) in clinical care with real-time feedback to physicians could help to enhance...     

Palliative care at the end of life: comparing quality in diverse settings

There is growing awareness that pain and other symptoms are often poorly managed at the end of life. The purpose of this quality improvement project was to compare the quality of care provided to a convenience sample of 195 patients who died during a six-month period, using a retrospective chart review. Quality was defined by symptom documentation, use of diagnostic and therapeutic procedures in the final 48 hours of life, and determination of advance directives. Daily and total charges incurred by these patients were also captured. Symptom distress was common, and diagnostic and therapeutic procedures were widespread. These data suggest areas for improvement in clinical practice, in palliative care units, and in all settings where end-of-life care is provided. Also, the data can guide future research into the quality of care provided to dying persons.     

Changes in health-related quality of life (HRQoL) in a population-based sample of children and adolescents after 3 years of follow-up

Objectives  To assess changes in health-related quality of life (HRQoL) in children and adolescents over a 3-year period and to examine factors associated with change. Methods  A representative sample of Spanish children and adolescents aged 8–18 years and their parents completed the KIDSCREEN-52 questionnaire at baseline and again after 3 years. Data were also collected on gender, pubertal development (PD), and family socio-economic status (SES). Change in HRQOL over time was evaluated using effect sizes (ES). Generalized estimating equations (GEE) were used to analyze associations among changes in KIDSCREEN scores, socio-demographic factors, and pubertal development. Results  Response rate at follow-up was 54% (n = 454). Overall, HRQoL worsened in eight out of the ten KIDSCREEN dimensions, with ES ranging from −0.10 (Moods and Emotions) to −0.34 (Psychological Well-being). The decrease was most marked in the intermediate age group (13–17 years of age at follow-up) and in girls. In the GEE models, pubertal development more strongly impacted changes in girls than in boys. Conclusions  In this representative, population-based sample of children and adolescents, moderate decrements in HRQoL were observed after 3 years. Changes were particularly important among girls and in relation to pubertal development. These results could provide useful reference data for other longitudinal studies in population sub-groups.