Abstract
There is a need for a modernized quality-of-life (QoL) definition and a greater distinction between global and health-related quality of life (HRQoL) for people with amyotrophic lateral sclerosis (PALS). The available assessments are intended to interpret global quality of life and HRQoL for PALS. OT practitioners will be able to use the research to determine a comprehensive definition of QoL and the appropriate QoL assessment to use for PALS in clinical practice.
Primary Author and Speaker: Addie Broom
Additional Authors and Speakers: Hannah Prescott, Mallorie Savage, Addie Broom, Emily Crawford, Mackenzie Franklin, Teal Benevides, Stephanie Johnson
ALS is a complex neurodegenerative condition resulting in progressive loss of voluntary muscle movements leading to functional impairment and dependence upon others (Jakobsson Larsson, Ozanne, Nordin, & Nygren, 2017). Defining QoL in PALS is challenging because of the fast progression of the disease and the dynamic shift of factors that contribute to overall QoL (Simmons, 2014). The current literature indicates that no widely accepted assessment is used to accurately measure QoL within PALS. The purpose of this scoping review was to examine the available assessments that are used for measuring QoL in PALS and present the data practitioners will require for valid, reliable, and consistent measurement of QoL for this population. We conducted a scoping review (Tricco et al., 2018) using a systematic search strategy consisting of a three-step screening process to identify articles and extract data. We searched 6 electronic databases for peer-reviewed articles. Our study involved quantitative and qualitative peer-reviewed, full-text research articles that are in English. Each article had to meet the following inclusion criteria: address QoL; include an assessment of QoL; and relate to PALS. We extracted the following from each of the 67 final articles: QoL definitions; assessment validity, reliability; and pragmatic assessment variables impacting use, such as assessment methods. Quantitative measures including descriptive statistics analyzing frequencies and percentages were used to describe the different assessments and a qualitative analysis was used to analyze possible themes of QoL definitions to determine if there is a consistent QoL definition. The preliminary results of the study indicate that the Short Form-36 (SF-36) is the most frequently used QoL assessment for individuals with ALS, and it is the most frequently used non-disease specific HRQoL assessment (16%). The most frequently used disease specific HRQoL assessment is the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) (7.33%) and the Sickness Impact Profile ALS-19 (SIP/ALS-19) (6.67%). The most frequently used non-disease specific, global QoL assessment was the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) (8.67%) and the Schedule of the Evaluation of Individual Quality of Life (SEIQoL) (4.67%), (13.33% when combined). The most frequently used disease specific, global QoL assessment was the ALS Specific Quality of Life Instrument (ALSSQOL) also called ALSSQOL-46 and the ALS Specific Quality of Life Instrument - Revised (ALSSQOL-R) (6.67%). There were a total of 35 assessments studied with a total frequency of 154 times mentioned in the articles. Of the 67 final included articles, 26 articles reported a QoL definition and 23 provided a citation for the definition. The World Health Organization (WHO) definition of QoL was most commonly cited in 10 articles, but were cited in different years. We identified high frequencies of non-disease specific QoL assessments compared to disease specific, and a similar amount of HRQoL versus global QoL assessments. Overall there is a need for a modern, consistent and holistic QoL definition and a clearer distinction between HRQoL and global QoL. As OTs, we believe QoL is individualized and functionally based, pressing the need for the use of assessments encompassing a holistic view of the individual while identifying factors most important to them during their disease process; thus, there is a need for higher frequencies of disease specific global QoL assessments to be used for PALS. This type of assessment captures more of what is important to PALS throughout the disease process, as supported by past and current ALS literature.
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