Development and Psychometric Assessment of the Function-Neutral Health-Related Quality of Life Measure

Krahn, Gloria L.; Horner‐Johnson, Willi; Hall, Trevor A.; Roid, Gale H.; Andresen, Elena M.; Fujiura, Glenn T.; Nosek, Margaret A.; Cardinal, Bradley J.; Drum, Charles E.; Suzuki, Rie; Peterson, Jana J.

doi:10.1097/phm.0b013e3182a517e6

Cited by 17 publications

(15 citation statements)

References 27 publications

(37 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…33 The authors object to the inclusion of functional status items in HRQOL measures. According to them, functional ability was important in the early days of HRQOL measurement, but subsequent conceptualizations of HRQOL have emphasized the importance of distinguishing function from health to define the relationship between these constructs 34 and to examine health outcomes within the context of longstanding functional limitations.…”

Section: Definitions and Models Of Qolmentioning

confidence: 99%

“…9,46 Using this view, it would also not be necessary to develop a function-neutral QOL measure. 33 In a QOL article, it would be useful to have a definition of QOL that fits the topic of the study or, alternatively, for the term "quality of life" to be used only as an umbrella for any aspect of living with illness or disability. All who use the term "quality of life" should be aware that there are many meanings of the phrase and they should specify what exactly they mean with the label.…”

Section: The Conceptmentioning

confidence: 99%

See 1 more Smart Citation

Definitions of Quality of Life: What Has Happened and How to Move On

Post

2014

Topics in Spinal Cord Injury Rehabilitation

389

239

View full text Add to dashboard Cite

Background: Quality of life (QOL) is an important outcome in spinal cord injury (SCI) rehabilitation, but it is unclear how to define and measure it. Objective: The aims of this article are to (a) show how the concepts of QOL and health-related quality of life (HRQOL) have evolved over time, (b) describe the various ways QOL has been defined and measured, and (c) provide recommendations on how to be as clear and consistent as possible in QOL research. Method: A narrative review of the QOL literature was performed. Results: Roots of the term "quality of life" in health care can be traced back to the definition of health by the World Health Organization in 1948. The use of the word "well-being" in this definition is probably a main factor in the continuing confusion about the conceptualization of QOL. Within the field of SCI rehabilitation, the Dijkers's QOL model, distinguishing between utilities, achievements, and subjective evaluations and reactions, has been very influential and the basis for several reviews and databases. Nevertheless, literature shows that it is still difficult to consistently use the term "quality of life" and categorize QOL measures. Several aspects of QOL that are specific for individuals with SCI have been identified. Conclusions: Researchers should be as specific and clear as possible about the concept and operationalization of QOL in their studies. Readers should not take the term "quality of life" for granted, but should inspect the topic of the study from the actual measures used.

show abstract

Section: Definitions and Models Of Qolmentioning

confidence: 99%

Section: The Conceptmentioning

confidence: 99%

Definitions of Quality of Life: What Has Happened and How to Move On

Post

2014

Topics in Spinal Cord Injury Rehabilitation

389

239

View full text Add to dashboard Cite

show abstract

“…The ICF framework was well suited for mapping items related to body functions and structures (e.g. ‘Did you experience physical pain?’ or ‘Did you pay attention well?’ from the Function-Neutral Health Related Quality of Life [FuNHRQOL] Scale [33]), but less so for other items of great importance to people with SSPI, most notably environmental factors related to AT, quality of life, opportunity, and personal factors.…”

Section: Resultsmentioning

confidence: 99%

“…The initial item pool and ICF coding from this study can serve as a future resource when augmented with a future larger set of candidate items. Item-generating methods used by Krahn and colleagues [33] might be extended to compare and contrast existing items with the content generated by people with SSPI and other BCI stakeholders.…”

Section: Discussionmentioning

confidence: 99%

Initial constructs for patient-centered outcome measures to evaluate brain–computer interfaces

Andresen

Fried-Oken

Peters³

et al. 2015

Disability and Rehabilitation: Assistive Technology

Self Cite

View full text Add to dashboard Cite

Purpose-The authors describe preliminary work toward the creation of patient-centered outcome (PCO) measures to evaluate brain-computer interface (BCI) as an assistive technology for individuals with severe speech and physical impairments (SSPI).Method-In Phase 1, 591 items from 15 existing measures were mapped to the International Classification of Functioning, Disability and Health (ICF). In Phase 2, qualitative interviews were conducted with eight people with SSPI and seven caregivers. Resulting text data were coded in an iterative analysis.Results-Most items (79%) mapped to the ICF environmental domain; over half (53%) mapped to more than one domain. The ICF framework was well suited for mapping items related to body functions and structures, but less so for items in other areas, including personal factors. Two constructs emerged from qualitative data: Quality of Life (QOL) and Assistive Technology. Component domains and themes were identified for each.Conclusions-Preliminary constructs, domains, and themes were generated for future PCO measures relevant to BCI. Existing instruments are sufficient for initial items but do not adequately match the values of people with SSPI and their caregivers. Field methods for interviewing people with SSPI were successful, and support the inclusion of these individuals in PCO research. KeywordsQuality of life; augmentative and alternative communication; communication disorders; severe speech and physical impairments

show abstract

“…Future public health surveys should therefore contain specific questions about the origin of both MD and obesity. HRQoL draws on measurements of physical functions, such as walking and climbing, and its use has been criticized in individuals with MD who automatically receive a lower score for these questions [ 31 , 32 ]. We attempted to select measurements of HRQoL that were as function-neutral as possible, looking at general health, mental health, pain, vitality, and sleep problems.…”

Section: Discussionmentioning

confidence: 99%

Is Obesity More Than a Double Burden among People with Mobility Disability? The Effect of Obesity on HRQoL and Participation in Society

et al. 2017

View full text Add to dashboard Cite

Obesity is more common in individuals with mobility disability than in those without this condition. Individuals with mobility disability also have lower health-related quality of life (HRQoL) and are limited in their participation in society. Therefore, this study aimed to investigate the body mass index (BMI) status and the association of overweight or obesity on HRQoL and participation in society among those with mobility disability in comparison to those without mobility disability. This cross-sectional study was based on a health survey conducted in Sweden in 2012 (n = 18,322; age, 18–64 years). Logistic regression with and without interaction analysis was applied. Effect modification by overweight status was significant for, moderate pain. For obesity, effect modification was seen for low general health, pain (moderate and severe), and not participating in work. BMI was higher among those with mobility disability, but no associations between overweight or obesity and HRQoL or participation in society were observed for those with mobility disability. Overweight and obesity did not add an additional burden to mobility disability, probably because mobility disability is associated with low HRQoL and low participation in society. Despite these results, population obesity prevention strategies are still needed.

show abstract

Development and Psychometric Assessment of the Function-Neutral Health-Related Quality of Life Measure

Abstract: A conceptually grounded four-domain, function-neutral measure of HRQOL that is appropriate for use with persons with and without various functional limitations was developed.

Cited by 17 publications

References 27 publications

Definitions of Quality of Life: What Has Happened and How to Move On

Definitions of Quality of Life: What Has Happened and How to Move On

Initial constructs for patient-centered outcome measures to evaluate brain–computer interfaces

Is Obesity More Than a Double Burden among People with Mobility Disability? The Effect of Obesity on HRQoL and Participation in Society

Contact Info

Product

Resources

About