Quality of life assessment instruments for adults: a systematic review of population-based studies

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Abstract

Background

Against a backdrop of population aging and improving survival rates for chronic noncommunicable diseases (CNCD), researchers are placing growing emphasis on health-related quality of life (HRQoL). The aim of this study was to identify the QoL assessment instruments used in population-based studies with adults conducted around the world.

Methods

A systematic review of original research published in all languages between 2008 and 2018 was conducted. Systematic reviews and meta-analyses were excluded.

Results

Sixty-three articles (38.1% conducted in the Americas) fitted the eligibility criteria. Based on the AHRQ checklist for cross-sectional studies and the Newcastle-Ottawa scale for cohort studies, methodological quality was shown to be fair in the majority of studies (55.6%) and good in 44.4%. The country with the highest number of publications was Brazil (20.6%). Twelve types of generic instruments and 11 specific instruments were identified. The generic instrument SF-36 was the most frequently used measure (33.3% of studies). In-home interviewing was exclusively used by 47.6% of the studies, while 39 studies (61.9%) reported the use of self-administered questionnaires. Over two-thirds of the studies (34.9%) used questionnaires to investigate the association between chronic diseases and/or associated factors.

Conclusions

It was concluded that the wide range of instruments and modes of questionnaire administration used by the studies may hinder comparisons between population groups with the same characteristics or needs. There is a lack of research on QoL and the factors affecting productive capacity. Studies of QoL in older persons should focus not only on the effects of disease and treatment, but also on the determinants of active aging and actions designed to promote it. Further research is recommended to determine which QoL instruments are best suited for population-based studies.

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Most cited references 70

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The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties.

M Power, B Murphy, W Kuyken … (1998)

This paper reports on the field testing, empirical derivation and psychometric properties of the World Health Organisation Quality of Life assessment (the WHOQOL). The steps are presented from the development of the initial pilot version of the instrument to the field trial version, the so-called WHOQOL-100. The instrument has been developed collaboratively in a number of centres in diverse cultural settings over several years; data are presented on the performance of the instrument in 15 different settings worldwide.

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Equivalence of electronic and paper administration of patient-reported outcome measures: a systematic review and meta-analysis of studies conducted between 2007 and 2013

Willie Muehlhausen, Helen Doll, Nuz Quadri … (2015)

Objective To conduct a systematic review and meta-analysis of the equivalence between electronic and paper administration of patient reported outcome measures (PROMs) in studies conducted subsequent to those included in Gwaltney et al’s 2008 review. Methods A systematic literature review of PROM equivalence studies conducted between 2007 and 2013 identified 1,997 records from which 72 studies met pre-defined inclusion/exclusion criteria. PRO data from each study were extracted, in terms of both correlation coefficients (ICCs, Spearman and Pearson correlations, Kappa statistics) and mean differences (standardized by the standard deviation, SD, and the response scale range). Pooled estimates of correlation and mean difference were estimated. The modifying effects of mode of administration, year of publication, study design, time interval between administrations, mean age of participants and publication type were examined. Results Four hundred thirty-five individual correlations were extracted, these correlations being highly variable (I2 = 93.8) but showing generally good equivalence, with ICCs ranging from 0.65 to 0.99 and the pooled correlation coefficient being 0.88 (95 % CI 0.87 to 0.88). Standardised mean differences for 307 studies were small and less variable (I2 = 33.5) with a pooled standardised mean difference of 0.037 (95 % CI 0.031 to 0.042). Average administration mode/platform-specific correlations from 56 studies (61 estimates) had a pooled estimate of 0.88 (95 % CI 0.86 to 0.90) and were still highly variable (I2 = 92.1). Similarly, average platform-specific ICCs from 39 studies (42 estimates) had a pooled estimate of 0.90 (95 % CI 0.88 to 0.92) with an I2 of 91.5. After excluding 20 studies with outlying correlation coefficients (≥3SD from the mean), the I2 was 54.4, with the equivalence still high, the overall pooled correlation coefficient being 0.88 (95 % CI 0.87 to 0.88). Agreement was found to be greater in more recent studies (p < 0.001), in randomized studies compared with non-randomised studies (p < 0.001), in studies with a shorter interval (<1 day) (p < 0.001), and in respondents of mean age 28 to 55 compared with those either younger or older (p < 0.001). In terms of mode/platform, paper vs Interactive Voice Response System (IVRS) comparisons had the lowest pooled agreement and paper vs tablet/touch screen the highest (p < 0.001). Conclusion The present study supports the conclusion of Gwaltney’s previous meta-analysis showing that PROMs administered on paper are quantitatively comparable with measures administered on an electronic device. It also confirms the ISPOR Taskforce´s conclusion that quantitative equivalence studies are not required for migrations with minor change only. This finding should be reassuring to investigators, regulators and sponsors using questionnaires on electronic devicesafter migration using best practices. Although there is data indicating that migrations with moderate changes produce equivalent instrument versions, hence do not require quantitative equivalence studies, additional work is necessary to establish this. Furthermore, there is the need to standardize migration practices and reporting practices (i.e. include copies of tested instrument versions and screenshots) so that clear recommendations regarding equivalence testing can be made in the future.raising questions about the necessity of conducting equivalence testing moving forward.

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A comparative review of generic quality-of-life instruments.

S Coons, D Keininger, Gautam Rao … (1999)

The assessment of health-related quality of life (HR-QOL) is an essential element of healthcare evaluation. Hundreds of generic and specific HR-QOL instruments have been developed. Generic HR-QOL instruments are designed to be applicable across a wide range of populations and interventions. Specific HR-QOL measures are designed to be relevant to particular interventions or in certain subpopulations (e.g. individuals with rheumatoid arthritis). This review examines 7 generic HR-QOL instruments: (i) the Medical Outcomes Study 36-Item Short Form (SF-36) health survey; (ii) the Nottingham Health Profile (NHP); (iii) the Sickness Impact Profile (SIP); (iv) the Dartmouth Primary care Cooperative Information Project (COOP) Charts; (v) the Quality of Well-Being (QWB) Scale; (vi) the Health Utilities Index (HUI); and (vii) the EuroQol Instrument (EQ-5D). These instruments were selected because they are commonly used and/or cited in the English language literature. The 6 characteristics of an instrument addressed by this review are: (i) conceptual and measurement model; (ii) reliability; (iii) validity; (iv) respondent and administrative burden; (v) alternative forms; and (vi) cultural and language adaptations. Of the instruments reviewed, the SF-36 health survey is the most commonly used HR-QOL measure. It was developed as a short-form measure of functioning and well-being in the Medical Outcomes Study. The Dartmouth COOP Charts were designed to be used in everyday clinical practice to provide immediate feedback to clinicians about the health status of their patients. The NHP was developed to reflect lay rather than professional perceptions of health. The SIP was constructed as a measure of sickness in relation to impact on behaviour. The QWB, HUI and EQ-5D are preference-based measures designed to summarise HR-QOL in a single number ranging from 0 to 1. We found that there are no uniformly 'worst' or 'best' performing instruments. The decision to use one over another, to use a combination of 2 or more, to use a profile and/or a preference-based measure or to use a generic measure along with a targeted measure will be driven by the purpose of the measurement. In addition, the choice will depend on a variety of factors including the characteristics of the population (e.g. age, health status, language/culture) and the environment in which the measurement is undertaken (e.g. clinical trial, routine physician visit). We provide our summary of the level of evidence in the literature regarding each instrument's characteristics based on the review criteria. The potential user of these instruments should base their instrument selection decision on the characteristics that are most relevant to their particular HR-QOL measurement needs.

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Author and article information

Contributors

Nila Patrícia Freire Pequeno: nilapfp@hotmail.com

Journal

Journal ID (nlm-ta): Health Qual Life Outcomes

Journal ID (iso-abbrev): Health Qual Life Outcomes

Title: Health and Quality of Life Outcomes

Publisher: BioMed Central (London )

ISSN (Electronic): 1477-7525

Publication date (Electronic): 30 June 2020

Publication date PMC-release: 30 June 2020

Publication date Collection: 2020

Volume: 18

Electronic Location Identifier: 208

Affiliations

[1 ]GRID grid.411233.6, ISNI 0000 0000 9687 399X, Postgraduate Program in Public Health at the Federal University of Rio Grande do Norte, ; Avenida Senador Salgado Filho, 1787, Lagoa Nova, Natal, RN Brazil

[2 ]GRID grid.411233.6, ISNI 0000 0000 9687 399X, Department of Nutrition at the Federal University of Rio Grande do Norte, ; Avenida Senador Salgado Filho, 3000, Lagoa Nova, Natal, RN CEP 59078-970 Brazil

[3 ]GRID grid.11899.38, ISNI 0000 0004 1937 0722, Department of Nutrition of the School of Public Health at the University of São Paulo, ; Av. Dr. Arnaldo, 715, Cerqueira César, São Paulo, SP Brazil

Article

Publisher ID: 1347

DOI: 10.1186/s12955-020-01347-7

PMC ID: 7329518

PubMed ID: 32605649

SO-VID: 0608a96b-c1a0-4dab-8633-62e02c25fa25

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 8 June 2019

Date accepted : 1 April 2020

Funding

Funded by: Postgraduate Program in Public Health at Federal University of Rio Grande do Norte

Award ID: 23077.014305/2019-29

Award Recipient : Nila Patrícia Freire Pequeno

Funded by: FundRef http://dx.doi.org/10.13039/501100002322, Coordenação de Aperfeiçoamento de Pessoal de Nível Superior;

Award ID: Finance Code 001

Award Recipient : Nila Patrícia Freire Pequeno

Custom metadata

ScienceOpen disciplines: Health & Social care

Keywords: quality of life,health-related quality of life,population surveys,systematic review

Data availability:

ScienceOpen disciplines: Health & Social care

Keywords: quality of life, health-related quality of life, population surveys, systematic review

Quality of life assessment instruments for adults: a systematic review of population-based studies

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Abstract

Background

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Results

Conclusions

Related collections

Asian Journal of Quality of Life (AjQoL)

Most cited references 70

The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties.

Equivalence of electronic and paper administration of patient-reported outcome measures: a systematic review and meta-analysis of studies conducted between 2007 and 2013

A comparative review of generic quality-of-life instruments.

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