Health-related quality of life across disease stages in patients with amyotrophic lateral sclerosis: results from a real-world survey.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is characterized by a rapid disease course, with disease severity being associated with declining health-related quality of life (HRQoL) in persons living with ALS (pALS). The main objective of this study was to assess the impact of disease progression on HRQoL across King's, Milano-Torino Staging (MiToS), and physician-judgement clinical staging. Additionally, we evaluated the impact of the disease on the HRQoL of care partners (cALS). METHODS: Data were sourced from the Adelphi ALS Disease Specific Programme (DSP)™, a cross-sectional survey of neurologists, pALS and cALS presenting in a real-world clinical setting between July 2020 and March 2021 in Europe and the United States. RESULTS: Neurologists (n = 142) provided data for 880 pALS. There were significant negative correlations between all three clinical staging systems and EuroQol (European Quality of Life) Five Dimension Five Level Scale (EQ-5D-5L) utility scores and visual analogue scale (VAS) ratings. Although not all differences were significant, 5-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5) scores showed a stepwise increase in HRQoL impairment at each stage of the disease regardless of the staging system. At later stages, high levels of fatigue and substantial activity impairment were reported. As pALS disease states progressed, cALS also experienced a decline in HRQoL and increased burden. CONCLUSIONS: Across outcomes, pALS and cALS generally reported worse outcomes at later stages of the disease, highlighting an unmet need in this population for strategies to maximise QoL despite disease progression. Recognition and treatment of symptoms such as pain and fatigue may lead to improved outcomes for pALS and cALS.

Race and gender moderation of the relationship between cessation beliefs and intentions: is race or gender message segmentation necessary in anti-smoking campaigns?

Debate persists over whether different message strategies in anti-smoking campaigns are needed for audiences of different races or genders. This study considers the need for 'message segmentation', which is the process of differentiating the beliefs that might be the focus of messages for population subgroups. We have two aims: (i) lay out an approach that yields evidence about the necessity for message segmentation and (ii) demonstrate and assess findings from this approach using the formative evaluation for the Philadelphia Anti-Smoking Campaign. We examine whether associations between beliefs about quitting smoking and intention to quit are moderated by race (black/white) or gender. Data came from a representative sample of 501 adult smokers (46% black; 56% female) surveyed in July 2010 for the campaign's formative evaluation. Out of 26 beliefs about cessation, 8 were significantly related to cessation intention regardless of subgroup affiliation, suggesting that these would be promising beliefs for messages in a unified campaign. Four beliefs were significant for white smokers only, and three beliefs were significant for female smokers only. The evidence justified a unified message approach because subgroups shared enough beliefs that could become message strategies to increase cessation across smokers without the added costs associated with message segmentation.