Positive Outcomes HIV

Original Editor - Melissa Coetsee

Top Contributors - Melissa Coetsee and Kim Jackson  

Objective[edit | edit source]

The Positive Outcomes is a novel patient reported outcome measure (PROM) designed to reflect the multidimensional symptoms and concerns faced by people living with Human Immunodeficiency Virus (HIV)[1].

It was developed (in 2020) to provide a brief, yet comprehensive, means of measuring patient concerns in the clinical context (for day-to-day routine care), with the aim of improving outcomes by promoting person-centred care. The goal was for it to adequately reflect what matters most to PLWH, while being specific enough to guide healthcare providers and providing individualised care[1].

Prior to the Positive Outcomes, most available HIV PROMs were focused on single dimensions[1]. The Positive Outcomes aims to fill this gap by providing the first single brief tool that measures multiple dimensions in this population group.

Intended Population[edit | edit source]

Positive Outcomes is a disease specific outcome measure designed for people (adults) living with HIV (PLWH). PLWH face a complex combination of physical, social and psychological factors which can adversely affect their quality of life. Generic PROMs have not been sufficient in detecting all the symptoms and concerns associated with HIV (eg. stigma and treatment adherence). Accurate measurement of these factors in the clinical setting can facilitate more holistic management approaches for PLWH[1].

The domains included in the Positive Outcomes PROM are[2]:

  • Physical well-being - pain, stomach and bowel, activities of daily living, sleep, memory or concentration
  • Emotional well-being - anxiety, depression, concerns around HIV disclosure, self esteem, spiritual needs
  • Interpersonal and sexual well-being - safety in relationships, recreational substance use, money, housing, immigration status, social support, sexual health, family planning, intimacy
  • Socioeconomic well-being
  • Information needs - about managing HIV

Development[edit | edit source]

Development of the Positive Outcomes HIV PROM involved a steering group , which included[1]:

  • Four people living with HIV - to ensure the patient is regarded as an expert in their condition
  • Four Health services researchers - to ensure that it would benefit service planning
  • Five HIV healthcare professionals - to ensure clinical relevance

The stages of development were as follows[1]:

  1. Stage 1: Gathering of information from key stakeholders through in-depth interviews to define concepts and generate items in a manner that ensures face and content validity.
  2. Stage 2: Item generation in two phases, which lead to a prototype
  3. Stage 3: Item improvement through cognitive interviewing

Method of Use[edit | edit source]

Patients as asked to complete a questionnaire prior to their contact with a healthcare provider. Clinicians then have to opportunity to focus the consultation according to the needs identified in the PROM.

Components of the PROM[1]:

  • Opens with one open-ended question offering the individual the opportunity to report their three main priorities for focus within their HIV consultation
  • 22 Questions with standard Likert (five point) response scales.
    • The first of these is a global assessment of wellbeing
    • The remaining 21 ask about specific constructs within 6 domains of need
    • Each question measures the extent to which the symptom of concern has affected the person in the previous 4 weeks [2].
Sample of question items in the Positive Outcomes questionnaire

The PROM helps to highlight areas for discussion and gives a score of 0-88. The higher the score, the higher the burden of concerns/symptoms[1].

The PROM helps to highlight areas for discussion and gives a score of 0-88. The higher the score, the higher the burden of concerns/symptoms[1].

It can be used at various intervals to allow for monitoring and evaluation, as well as continued treatment approaches that are responsive the the changing needs of PLWH.

Evidence[edit | edit source]

The Positive Outcomes PROM is still very new, but has however shown good psychometric properties (validity, reliability and responsiveness) in the context of five different European cities [2]. Further studies are needed in more varied contexts and health statuses.

Validity[edit | edit source]

Content and face validity: The Positive Outcomes PROM has proven content validity as measured by the COSMIN criteria. This means that is there is evidence to support its relevance, comprehensiveness and comprehensibility [1].

Convergent and structural validity has also been proven for measuring the symptoms and concerns among adults living with HIV. The results of the Positive Outcomes correlates well with other quality of life measures for HIV[2].

Reliability & Responsiveness[edit | edit source]

Test-retest reliability and responsiveness has been established in one study[2] in Europe. Further testing might be required for different contexts.

Conclusion[edit | edit source]

The Positive Outcomes HIV PROM is the first brief PROM designed for used in the clinical setting, which addresses all domains affecting PLWH. Incorporating it into routine HIV care will allow PLWH to communicate their priorities, and empower them to be active participants in their care[1]. It also provides a very useful tool to be used in research studies that are aimed at evaluating and measuring the effectiveness and comprehensiveness of HIV programs. Future translation and adaptation to various cultures/contexts will be required.

Resources[edit | edit source]

Positive Outcomes HIV PROM

Links[edit | edit source]

Pain in People Living with HIV

Mental Health in People Living with HIV


References[edit | edit source]

  1. 1.00 1.01 1.02 1.03 1.04 1.05 1.06 1.07 1.08 1.09 1.10 Bristowe K, Murtagh FE, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Cheallaigh CN. The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV. Health and Quality of Life Outcomes. 2020 Dec;18(1):1-0.
  2. 2.0 2.1 2.2 2.3 2.4 Harding R, Jones CI, Bremner S, Bristowe K, West B, Siegert RJ, O’Brien KK, Whetham J, EMERGE Consortium, Horizon 2020, Whetham J, Fatz D. Positive Outcomes: Validity, reliability and responsiveness of a novel person‐centred outcome measure for people with HIV. HIV medicine. 2022 Jul;23(6):673-83.