Assessing health-related quality of life in NeuroAIDS: Some psychometric properties of the Neurological Quality of Life Questionnaire (NeuroQOL)

Robertson, Kevin; Parsons, Thomas D.; Rogers, Steven A.; Braaten, Alyssa; Robertson, Wendy T.; Wilson, Susan E.; Hall, Colin D.

doi:10.1016/j.jocn.2006.03.004

Cited by 3 publications

(1 citation statement)

References 27 publications

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“…Results yielded four instruments that appeared to meet our inclusion criteria [37-40]. Three instruments were HRQL/QOL measures; the Missoula-Vitas Quality-of-Life Index developed to assess quality of life in advanced HIV illness in a palliative care setting [37], the Neurological Quality of Life Questionnaire, a general measure of quality of life in HIV infection [38], and the Chronic Illness Quality of Life Ladder developed to assess quality of life across four time periods (past, present, future, and life without a diagnosis of HIV) [39]. The fourth instrument was a lipodystrophy scale developed to assess the severity of lipodystrophy from the perspective of individuals living with HIV [40].…”

Section: Discussionmentioning

confidence: 99%

How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV

O’Brien

Bayoumi

Strike

et al. 2010

Health and Quality of Life Outcomes

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BackgroundDespite the multitude of health challenges faced by adults living with HIV, we know of no HIV-specific instrument developed for the purpose of describing the health-related consequences of HIV, a concept known as disability. In a previous phase of research, adults living with HIV conceptualized disability as symptoms/impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV. In this paper, we describe the extent to which existing HIV-specific health-status instruments capture the experience of disability for adults living with HIV.MethodsWe searched databases from 1980 to 2006 for English language, HIV-specific, self-reported questionnaires consisting of at least two items that were tested for reliability and validity. We then conducted a content analysis to assess how well existing questionnaires describe disability as defined by the Episodic Disability Framework, a framework that conceptualizes this experience from the perspective of adults living with HIV. We matched items of the instruments with categories of the framework to evaluate the extent to which the instruments capture major dimensions of disability in the framework.ResultsWe reviewed 4274 abstracts, of which 30 instruments met the inclusion criteria and were retrieved. Of the four major dimensions of disability, symptoms/impairments were included in all 30 instruments, difficulties with day-to-day activities in 16, challenges to social inclusion in 16, and uncertainty in 9. Seven instruments contained at least 1 item from all 4 dimensions of disability (breadth) however, the comprehensiveness with which the dimensions were represented (depth) varied among the instruments.ConclusionsIn general, symptoms/impairments and difficulties carrying out day-to-day activities were the disability dimensions characterized in greatest depth while uncertainty and challenges to social inclusion were less well represented. Although none of the instruments described the full breadth and depth of disability as conceptualized by the Episodic Disability Framework, they provide a foundation from which to build a measure of disability for adults living with HIV.

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Section: Discussionmentioning

confidence: 99%

How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV

O’Brien

Bayoumi

Strike

et al. 2010

Health and Quality of Life Outcomes

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Epidemiology of Psychopathology in HIV

2014

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A Review of HIV-Specific Patient-Reported Outcome Measures

Engler

Lessard

Lebouché

2016

Patient

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The use of patient-reported outcome (PRO) measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patient-centered care. In human immunodeficiency virus (HIV), while PROs are used in research, their application in clinical practice has been limited despite their potential utility. PRO selection is an important consideration when contemplating their use. As past reviews of PROs in HIV have focused on particular areas (e.g. disability, satisfaction with care), a more comprehensive review could better inform on the available instruments and their scope. This article reviews HIV-specific PROs to produce an inventory and to identify the central concepts targeted over time. Seven databases were searched (HAPI, MEDLINE, PsychINFO, PubMed, EMBASE, CINAHL, Google Scholar), generating 14,794 records for evaluation. From these records, 117 HIV-specific PROs were identified and categorized based on a content analysis of their targeted concept: Health-Related Quality of Life (23; 20 %), ART and Adherence-Related Views and Experiences (19; 16 %), Healthcare-Related Views and Experiences (15; 13 %), Psychological Challenges (12; 10 %), Symptoms (12; 10 %), Psychological Resources (10; 9 %), HIV Self-Management and Self-Care (8; 7 %), HIV-Related Stigma (8; 7 %), Body and Facial Appearance (4; 3 %), Social Support (3; 3 %), Sexual and Reproductive Health (2; 2 %), and Disability (1; 1 %). This review highlights the variety and evolution of HIV-specific PROs, with the arrival of seven categories of PROs only after the advent of highly-active antiretroviral therapy. Our inventory also offers a useful resource. However, the interest of further HIV-specific PRO development should be explored in sexual health, which received little independent attention.

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Assessing health-related quality of life in NeuroAIDS: Some psychometric properties of the Neurological Quality of Life Questionnaire (NeuroQOL)

Cited by 3 publications

References 27 publications

How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV

How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV

Epidemiology of Psychopathology in HIV

A Review of HIV-Specific Patient-Reported Outcome Measures

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