The quality of life impact of the COVID-19 pandemic and lockdowns for people living with multiple sclerosis (MS): evidence from the Australian MS Longitudinal Study.

PURPOSE: People living with multiple sclerosis (PwMS) in metropolitan Victoria, Australia, experienced a 112-day, COVID-19-related lockdown in mid-2020. Contemporaneously, Australian PwMS elsewhere experienced minimal restrictions, resulting in a natural experiment. This study investigated the relationships between lockdowns, COVID-19-related adversity, and health-related quality of life (HRQoL). It also generated health state utilities (HSU) representative of changes in HRQoL. METHODS: Data were extracted from Australian MS Longitudinal Study surveys, which included the Assessment of Quality of Life-Eight Dimensions (AQoL-8D) instrument and a COVID-19 questionnaire. This COVID-19 questionnaire required participants to rank their COVID-19-related adversity across seven health dimensions. Ordered probits were used to identify variables contributing to adversity. Linear and logit regressions were applied to determine the impact of adversity on HRQoL, defined using AQoL-8D HSUs. Qualitative data were examined thematically. RESULTS: N = 1666 PwMS (average age 58.5; 79.8% female; consistent with the clinical presentation of MS) entered the study, with n = 367 (22.0%) exposed to the 112-day lockdown. Lockdown exposure and disability severity were strongly associated with higher adversity rankings (p < 0.01). Higher adversity rankings were associated with lower HSUs. Participants reporting major adversity, across measured health dimensions, had a mean HSU 0.161 (p < 0.01) lower than participants reporting no adversity and were more likely (OR: 2.716, p < 0.01) to report a clinically significant HSU reduction. Themes in qualitative data supported quantitative findings. CONCLUSIONS: We found that COVID-19-related adversity reduced the HRQoL of PwMS. Our HSU estimates can be used in health economic models to evaluate lockdown cost-effectiveness for people with complex and chronic (mainly neurological) diseases.

Validation of the EQ-5D-5L and psychosocial bolt-ons in a large cohort of people living with multiple sclerosis in Australia.

BACKGROUND: Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. METHODS: A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. RESULTS: Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. CONCLUSIONS: The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.

Committing to Breastfeeding in Social Work.

This article addresses the importance of breastfeeding for the social work profession. Because breastfeeding is a critical component of maternal and child health, persistent racial and socioeconomic breastfeeding inequality is a social justice issue in need of social work commitment. Even while breastfeeding rates have been increasing in the United States there are some groups of mothers who initiate breastfeeding less frequently or have trouble with sustaining breastfeeding for recommended lengths. These mothers and their babies thus miss out on the ample benefits of this nurturing interaction. Using social work's unique disciplinary perspective and commitment to social justice, the authors place essential understanding of breastfeeding health benefits within the core values of the National Association of Social Work ethical code. The practice context for early breastfeeding intervention with mothers and families is discussed with acknowledgment of the maternal-child health focus at the root of the profession. Recognition of the potential of contemporary social work to advance breastfeeding equity through practice, scholarship, and action positions breastfeeding support activities as integral to meeting the grand challenges of the social work profession.

An initial validation of a measure of sexual perceptions regarding breastfeeding.

UNLABELLED: Increasing breastfeeding initiation and duration in the United States has been identified as a major public health goal. This article presents an initial validation of the Sexual Perceptions of Breastfeeding Scale (SPBFS). The SPBFS was designed to assess the presence of sexual perceptions regarding breastfeeding that may interfere with a mother's choice to breastfeed an infant. This study establishes the initial psychometric properties of the SPBFS based on a sample of 140 mothers participating in the federal supplemental food program Women, Infants, and Children. RESULTS/CONCLUSIONS: the SPBFS was developed as a three-factor instrument. Preliminary findings confirm this structure and indicate that the SPBFS shows promise for helping explore how sexual perceptions of breastfeeding interact with the decisions a mother makes regarding breastfeeding.

Addressing breastfeeding disparities in social work.

This article examines social justice issues affecting breastfeeding in the United States. Public health goals for breastfeeding initiation and duration and barriers to breastfeeding among low-income groups are discussed. Suggestions are made about ways social workers may more assertively support breastfeeding in the context of social work practice.