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Purpose: Low-grade glioma (LGG) patients may face health-related quality-of-life (HRQoL) impairments, due to the tumour, treatment and associated side-effects and prospects of progression. We systematically identified quantitative studies assessing HRQoL in adult LGG patients, for: aspects of HRQoL impacted; comparisons with non-cancer controls (NCC) and other groups; temporal trends; and factors associated with HRQoL. Methods: MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were systematically searched from inception to 14th September 2021. Following independent screening of titles and abstracts and full-texts, population and study characteristics, and HRQoL findings were abstracted from eligible papers, and quality appraised. Narrative synthesis was conducted. Results: Twenty-nine papers reporting 22 studies (cross-sectional, n = 13; longitudinal, n = 9) were identified. Papers were largely good quality, though many excluded patients with cognitive and communication impairments. Comparators included high-grade gliomas (HGG) (n = 7); NCCs (n = 6) and other patient groups (n = 3). Nineteen factors, primarily treatment (n = 8), were examined for association with HRQoL. There was substantial heterogeneity in HRQoL instruments used, factors and aspects of HRQoL assessed and measurement timepoints. HRQoL, primarily cognitive functioning and fatigue, in adult LGG patients is poor, and worse than in NCCs, though better than in HGG patients. Over time, HRQoL remained low, but stable. Epilepsy/seizure burden was most consistently associated with worse HRQoL. Conclusion: LGG patients experience wide-ranging HRQoL impairments. HRQoL in those with cognitive and communication impairments requires further investigation. These findings may help clinicians recognise current supportive care needs and inform types and timings of support needed, as well as inform future interventions. [ABSTRACT FROM AUTHOR]

Purpose: Healthcare engagement is a core measurement target for efforts to improve healthcare systems. This construct is broadly defined as the extent to which healthcare services represent collaborative partnerships with patients. Previous qualitative work operationalized healthcare engagement as generalized self-efficacy in four related subdomains: self-management, collaborative communication, health information use, and healthcare navigation. Building on this work, our objective was to establish a healthcare engagement instrument that is sufficiently unidimensional to yield a single score. Method: We conducted cognitive interviews followed by a nation-wide mail survey of US Veteran Administration (VA) healthcare users. Data were collected on 49 candidate healthcare engagement items, as well as measures of self-efficacy for managing symptoms, provider communication, and perceived access. Items were subjected to exploratory bifactor, statistical learning, and IRT analyses. Results: Cognitive interviews were completed by 56 patients and 9552 VA healthcare users with chronic conditions completed the mail survey. Participants were mostly white and male but with sizable minority participation. Psychometric analyses and content considerations reduced the item pool to 23 items, which demonstrated a strong general factor (OmegaH of.89). IRT analyses revealed a high level of reliability across the trait range and little DIF across groups. Most health information use items were removed during analyses, suggesting a more independent role for this domain. Conclusion: We provide quantitative evidence for a relatively unidimensional measure of healthcare engagement. Despite developed with VA healthcare users, the measure is intended for general use. Future work includes short-form development and validation with other patient groups. [ABSTRACT FROM AUTHOR]

Purpose: In response to the increased emphasis placed on older people's self-reliance in many welfare societies, we aimed to develop and validate a measurement instrument, assessing perceived control in health care among older adults with care needs. The target group consists of older people who live (semi-)independently and use professional health care, with or without informal care.Methods: Phase I (development) of the study consisted of the construction of the instrument based on the input from a variety of stakeholders. Phase II (validation) entailed a quantitative study in a sample of 247 respondents selected from the Longitudinal Aging Study Amsterdam, to assess the instrument's construct validity (structural validity and hypotheses testing) and reliability (internal consistency).Results: The questionnaire consists of 29 items, related to organizing professional care, communication with care professionals, health management in the home situation, planning (more) complex care in the future, and perceived support from the social network. Based on a factor analysis, we identified three subscales: (I.) 'perceived personal control in health care'; (II.) 'anticipated personal control regarding future health care'; and (III.) 'perceived support from the social network,' with internal consistencies varying from Cronbach's α = .71 to .90. Factor I was associated with mastery, self-efficacy, self-esteem (r = .31-.35) and factor III with social loneliness (r = -.42). Factor II correlated less strongly with mastery, self-efficacy, and self-esteem (r < .30).Conclusion: Our questionnaire revealed sufficient construct validity and internal consistency. The instrument provides a basis for further quantitative research regarding control, especially in relation to health care-related outcomes. [ABSTRACT FROM AUTHOR]