RESUMO
Over the past few decades, the life expectancy of people living with HIV has markedly improved due to the advances in HIV diagnosis, linkage to care, and treatment. However, with these advances, a new set of challenges has emerged that must be addressed to ensure the long-term well-being of people living with HIV. In this article, as part of a wider journal supplement, we explore the unmet needs and challenges across the HIV continuum of care and re-define what long-term success looks like to support the healthy ageing of all people affected by HIV.
Assuntos
Continuidade da Assistência ao Paciente , Infecções por HIV , Humanos , Infecções por HIV/terapia , Qualidade de Vida , Envelhecimento SaudávelRESUMO
OBJECTIVES: In recent decades, the needs of people living with HIV have evolved as life expectancy has greatly improved. Now, a new definition of long-term success (LTS) is necessary to help address the multifaceted needs of all people living with HIV. METHODS: We conducted a two-phase research programme to delineate the range of experiences of people living with HIV. The insights garnered from these research phases were explored in a series of expert-led workshops, which led to the development and refinement of the LTS framework. RESULTS: The insights generated from the research phases identified a series of themes that form a part of LTS. These themes were subsequently incorporated into the LTS framework, which includes five outcome pillars: sustained undetectable viral load, minimal impact of treatment and clinical monitoring, optimized health-related quality of life, lifelong integration of healthcare, and freedom from stigma and discrimination. A series of supporting statements were also developed by the expert panel to help in the achievement of each of the LTS pillars. CONCLUSIONS: The LTS framework offers a comprehensive and person-centric approach that, if achieved, could help improve the long-term well-being of people living with HIV and support the LTS vision of 'every person living with HIV being able to live their best life'.
Assuntos
Infecções por HIV , Humanos , Infecções por HIV/tratamento farmacológico , Qualidade de Vida , Estigma SocialRESUMO
WHO defines ageism as stereotypes, prejudice, and discrimination based on age. Ageism is a multidimensional concept that encompasses multiple components related to the individual, the social group, and the institution in different cultural and environmental settings. In people ageing with HIV these elements include self-stigma, discrimination in society, and experiences in care, many of which are unique to older people. In this Position Paper, we use experience of people with HIV and clinicians taking care of them to explore these issues in high-income countries. The intersectionality of multiple -isms, which affect the lives of older people living with HIV, and ageism enhance several HIV-related issues, including self-inflicted stigma, and loneliness. Research is needed to explore how ageism contributes to worse physical, mental, and social wellbeing outcomes for people with HIV. The model of care for older people living with HIV needs to go beyond virological success by adopting a geriatric mindset, which is attentive to the challenge of ageism and is proactive in promoting a comprehensive approach for the ageing population. All stakeholders and the community should work together to co-create institutional strategies and educational programmes and enable respectful intergenerational dialogue to foster a stigma-free future for older people living with HIV.
Assuntos
Etarismo , Infecções por HIV , Humanos , Idoso , Infecções por HIV/tratamento farmacológico , Estigma Social , Envelhecimento , Cuidados PaliativosRESUMO
An extension of the UNAIDS 90-90-90 target proposes >90% of people living with HIV (PLHIV) should have good health-related quality of life (HrQoL); however, limited guidance exists. The "Health Goals for Me" framework, an individualized approach to HIV care, provides a framework to assess HrQoL. We analyzed several patient-reported outcome measures (PROMs) to develop a practical toolkit to facilitate shared physician-patient decision-making. HrQoL subdomains, actionable in the clinical setting and measurable as PROMs, were selected. PROMs were collated through systematic literature searches, scored by the authors on usability, validation, and availability, after which practical recommendations were made. Nine subdomains were selected across physical, psychological, social, and environmental domains; 46 validated PROMs were identified. After pre-screening, from 39 evaluated PROMs, we recommended PROMs in the following subdomains: fatigue/energy loss, frailty/resilience, sleep disturbance, substance use, anxiety/depression, cognition, sexual function and desire, and stigma. Using this toolkit, healthcare professionals and PLHIV can collaborate and mutually agree on individual care objectives. Following the "Health Goals for Me" framework, appropriate care interventions can be implemented and reviewed in a continuous cycle. We discussed how eHealth interventions, which will have increasing importance in the post-COVID era, can facilitate improved HrQoL for PLHIV by utilizing toolkits such as the one described here. Implementation of this practical framework and the PROMs toolkit could provide a useful approach to assessing HrQoL in PLHIV and could enhance the physician's ability to gain valuable insights into the patient's daily life across a broad range of HrQoL issues.
Assuntos
COVID-19 , Infecções por HIV , Infecções por HIV/tratamento farmacológico , Estilo de Vida Saudável , Humanos , Qualidade de Vida , SARS-CoV-2RESUMO
BACKGROUND: Marginalised communities such as homeless people, people who use drugs (PWUD), lesbian, gay, bisexual, transgender and intersex people (LGBTI), prisoners, sex workers and undocumented migrants are at high risk of poor health and yet face substantial barriers in accessing health and support services. The Nobody Left Outside (NLO) Service Design Checklist aims to promote a collaborative, evidence-based approach to service design and monitoring based on equity, non-discrimination and community engagement. METHODS: The Checklist was a collaborative project involving nine community advocacy organisations, with a focus on homeless people, PWUD, LGBTI people, prisoners, sex workers, and undocumented migrants. The Checklist was devised via a literature review; two NLO platform meetings; a multistakeholder policy workshop and an associated published concept paper; two conference presentations; and stakeholder consultation via a European Commission-led Thematic Network (including webinar). RESULTS: The NLO Checklist has six sections in line with the WHO Health Systems Framework. These are: (1) service delivery, comprising design stage (6 items), services provided (2 items), accessibility and adaptation (16 items), peer support (2 items); (2) health workforce (12 items); (3) health information systems (7 items); (4) medical products and technologies (1 item); (5) financing (3 items); and (6) leadership and governance (7 items). It promotes the implementation of integrated (colocated or linked) healthcare services that are community based and people centred. These should provide a continuum of needs-based health promotion, disease prevention, diagnosis, treatment and management, together with housing, legal and social support services, in alignment with the goals of universal health coverage and the WHO frameworks on integrated, people-centred healthcare. CONCLUSIONS: The Checklist is offered as a practical tool to help overcome inequalities in access to health and support services. Policymakers, public health bodies, healthcare authorities, practitioner bodies, peer support workers and non-governmental organisations can use it when developing, updating or monitoring services for target groups. It may also assist civil society in wider advocacy efforts to improve access for underserved communities.
Assuntos
Lista de Checagem , Criança , Europa (Continente) , Acessibilidade aos Serviços de Saúde , Humanos , Minorias Sexuais e de Gênero , MigrantesRESUMO
Since HIV has evolved from being a fatal illness to a chronic condition, this brings new challenges relating to long-term health, as increasing numbers of people living with HIV (PLHIV) navigate their lives beyond viral suppression. This review presents the challenges facing patients and health-care providers managing HIV in Europe today. We highlight the challenges that the evolving landscape in HIV brings, including managing an aging and more diverse population of PLHIV; this requires a shift from managing disease to managing health and may best be achieved by multidisciplinary teams in the long term. We introduce the concept of "health goals for me:" an individualized approach to the management of HIV, and use this as the basis for a proposed framework for assessing health-related quality of life for PLHIV. Our framework comprises a continuous cycle of "ask and measure," "feedback and discussion," and "intervention," based on collaboration between the health-care professional and patient. For improved long-term management of PLHIV, we consider that this framework should become an intrinsic part of HIV care in the future and that the "health goals for me" concept be used as a tool to facilitate healthy living for PLHIV beyond viral suppression.