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Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy‐making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy‐making for older adults. Methods: A systematic search of peer‐reviewed and grey literature (English only) describing public engagement initiatives in health policy‐making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy‐making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation‐type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion: This review describes how public engagement practices have been conducted to help inform health policy‐making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults. [ABSTRACT FROM AUTHOR]

About 50% of people living with HIV will develop HIV-associated neurocognitive disorder (HAND) during their lifetime, and we know that cognitive issues are a concern for people living with HIV. However, limited information exists regarding how HAND is managed and coped with, or how cognitive issues are discussed with others, including health care professionals. Following a community-based research approach, we conducted 25 interviews in 2016 aimed to (1) build the capacity of people living with HIV, (2) facilitate participant recruitment and data collection, (3) increase the validity and reliability of our data analysis results, and (4) facilitate knowledge transfer and exchange regarding HAND. After thorough training, we engaged a number of peer researchers living with HAND in the analysis and knowledge transfer and exchange (KTE) phases of the study. This engagement prompted a number of tensions between the clinicians and the peers that we learned to navigate and make productive. We conclude that it is possible to engage patients and providers only if careful attention, time and human resources are provided to navigating the emerging tensions. The outcomes of our study suggest that engaging an interdisciplinary team across multiple sites with PRAs is a valuable method for comprehensively exploring the lived experience of a complex chronic condition such as HAND.

Background: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. Methods: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test–retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). Results: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test–retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19–25 out of 100), followed by the presence (MDC95% range: 37–54) and episodic scales (MDC95% range:44–76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. Conclusions: The EDQ possesses internal consistency reliability, construct validity, and test–retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV. [ABSTRACT FROM AUTHOR]

Cognitive impairment is a common comorbidity among individuals aging with HIV, which can be an extreme source of stress and anxiety for many. Psychosocial interventions have the potential to alleviate symptoms associated with cognitive impairment and help improve the quality of life of people with HIV as they continue to age; these interventions are in the infancy of development and require further testing via clinical trials. The slow development of interventions may be partially attributed to a common trend of requiring a formal HIV-associated neurocognitive disorder diagnosis to qualify for psychosocial clinical trials. HIV-associated neurocognitive disorder is diagnosed through intensive, time-consuming tests, and still many cases of HIV-associated neurocognitive disorder remain undiagnosed, misdiagnosed, or misclassified due to the limitations of the assessment process. This commentary suggests an alternate method of screening for cognitive impairments through the use of a brief, low-barrier assessment, alongside validity considerations. Such alternate screening may improve enrollment and completion rates in psychosocial clinical trials for people aging with HIV and cognitive impairment, by removing the burden of extensive testing that is commonly associated with an HIV-associated neurocognitive disorder diagnosis from clinical trial eligibility, while still providing valuable insight into individuals' cognitive functioning. [ABSTRACT FROM AUTHOR]

Purpose: We assessed the sensibility, utility, and implementation considerations of the Short-Form HIV Disability Questionnaire (SF-HDQ) in community-based settings. Methods: We conducted a mixed-methods study with adults living with HIV and community providers in seven community sites in Canada. We administered the SF-HDQ, a sensibility questionnaire and conducted semi-structured interviews. The SF-HDQ was sensible if median scores were ≥5/7(adults living with HIV) and ≥4/7(community providers) for ≥80% of the sensibility questionnaire items. Qualitative interview data were analyzed using content analysis. Results: Median sensibility scores were ≥5 for adults living with HIV (n=44) and ≥4 for community providers (n =10) for 95% and 100% of items, respectively. The SF-HDQ is comprehensive, represented disability, captured its episodic nature, and was easy to complete. Community utility included: facilitating communication and engagement with community; taking a snapshot of disability and tracking changes over time; guiding referrals; fostering self-reflection; and informing community programs. Considerations for implementation included flexible, person-centered approaches to mode and processes of administration, and communicating scores based on personal preferences among persons living with HIV. Conclusion: The SF-HDQ possesses sensibility and utility for use in community-based settings. [ABSTRACT FROM AUTHOR]

This paper reports on the transformation that has occurred in the care of people living with HIV/AIDS in a Toronto Hospice. Casey House opened in the pre-HAART era to care exclusively for people with HIV/AIDS, an incurable disease. At the time, all patients were admitted for palliative care and all deaths were due to AIDS-defining conditions. AIDS-defining malignancies accounted for 22 percent of deaths, mainly, Kaposi sarcoma and lymphoma. In the post-HAART era, AIDS-defining malignancies dropped dramatically and non-AIDS-defining malignancies became a significant cause of death, including liver cancer, lung cancer and gastric cancers. In the post-HAART era, people living with HIV/AIDS served at Casey House have changed considerably, with increasing numbers of patients facing homelessness and mental health issues, including substance use. Casey House offers a picture of the evolving epidemic and provides insight into changes and improvements made in the care of these patients. [ABSTRACT FROM AUTHOR]