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Optimising HIV care using information obtained from PROMs: protocol for an observational study

Por: Moody · K. · Nieuwkerk · P. T. · Bedert · M. · Nellen · J. F. · Weijsenfeld · A. · Sigaloff · K. C. E. · Laan · L. · Bruins · C. · van Oers · H. · Haverman · L. · Geerlings · S. E. · Van der Valk · M.
Introduction

Successful antiviral therapy has transformed HIV infection into a chronic condition, where optimising quality of life (QoL) has become essential for successful lifelong treatment. Patient-reported outcome measures (PROMs) can signal potential physical and mental health problems related to QoL. This study aims to determine whether PROMs in routine clinical care improve quality of care as experienced by people with HIV (PWH).

Methods and analysis

We report the protocol of a multicentre longitudinal cohort studying PWH at Amsterdam University Medical Centres in the Netherlands. PROMs are offered annually to patients via the patient portal of the electronic health record. Domains include anxiety, depression, fatigue, sleep disturbances, social isolation, physical functioning, stigma, post-traumatic stress disorder, adherence, drug and alcohol use and screening questions for sexual health and issues related to finances, housing and migration status. Our intervention comprises (1) patients’ completion of PROMs, (2) discussion of PROMs scores during annual consultations and (3) documentation of follow-up actions in an individualised care plan, if indicated. The primary endpoint will be patient-experienced quality of care, measured by the Patient Assessment of Chronic Illness Care, Short Form (PACIC-S). Patients will provide measurements at baseline, year 1 and year 2. We will explore change over time in PACIC-S and PROMs scores and examine the sociodemographical and HIV-specific characteristics of subgroups of patients who participated in all or only part of the intervention to ascertain whether benefit has been achieved from our intervention in all subgroups.

Ethics and dissemination

Patients provide consent for the analysis of data collected as part of routine clinical care to the AIDS Therapy Evaluation in the Netherlands study (ATHENA) cohort through mechanisms described in Boender et al. Additional ethical approval for the analysis of these data is not required under the ATHENA cohort protocol. The results will be presented at national and international academic meetings and submitted to peer-reviewed journals for publication.

Between delivering chronic care and answering patients' burdens: Understanding HIV specialist nurses' experiences in the age of treatment

Abstract

Aim(s)

To understand the experiences of HIV nurses in the context of ambivalence between biomedical treatment advancements and the continuing burden for people living with HIV and negative representations of HIV.

Design

An interpretative phenomenological study was conducted using in-depth interviews.

Methods

Twenty-one interviews with nurses were conducted between November 2021 and March 2022. A thematic analysis was performed.

Results

Six themes related to the nurses' experiences emerged. Despite effective treatment for most people with HIV, nurses identify patient populations that require additional care. Nurses are flexible in making extra appointments to accommodate complex issues in these patients. Nurses develop a unique relationship with their patients based on trust and empathy, linked to patient's experiences with stigma and discrimination for people with HIV. Nurses perceive their tasks as becoming increasingly complex. There is explicit awareness about the changes in HIV care from acute to chronic care and how this affects nurses' tasks. Nurses continue to differentiate HIV from other chronic conditions.

Conclusion

Biomedical advancements change the organization of HIV care while public health concerns remain and patient population has particular needs due to negative social representations of HIV. Nurses navigate these issues in their everyday care.

Implications for the Profession and/or Patient Care

A potential re-evaluation of the role of nurses in providing chronic HIV care.

Impact

Our study addresses the roles of HIV nurses as care is shifting towards chronic care models. The unique relationship between nurses and patients is key in understanding the importance of nurses in the care trajectory. These findings impact the institutional role of nurses in HIV treatment centres and the institutional organization of HIV care.

Report Method

The COREQ guideline was used.

Patient or Public Contribution

Amsterdam UMC (AMC) staff, the national organization of HIV Nurses and patient organizations contributed to the study design.

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