"I have failed to separate my HIV from this pain": the challenge of managing chronic pain among people with HIV.

Pain is a highly prevalent and burdensome symptom among people with HIV (PWH). This study aims to identify how the experience of living with HIV and chronic pain influences pain beliefs, health-seeking and pain management. Thirty-nine purposively sampled PWH with chronic pain (sample characteristics = 61% women, 79% Black, Asian and minority ethnic groups, 18% men who have sex with men, 45-54 median age category) participated in focus groups in London. Focus groups were co-facilitated with community members. Transcripts wereanalysed using a thematic approach. Findings revealed that HIV stigma, fractured care pathways, and general practitioners' lack of HIV training are barriers to supported pain management. Unaddressed pain results in poorer mental health and reduced quality of life, which has important clinical implications for HIV treatment adherence. Creating HIV-specific pain resources, activating social networks, and pain self-management techniques are potential solutions. Person-centred assessment and HIV training is needed to help clinicians identify PWH with chronic pain. Clear guidelines need to be developed to identify which health service providers are responsible for chronic pain management in PWH. This study generated a refined version of the Fear Avoidance Model that introduces a dimension of HIV-specific behaviours that impact PWHs seeking chronic pain management.

Are patient outcomes improved by models of professionally-led community HIV management which aim to be person-centred? A systematic review of the evidence.

UNAIDS advocates person-centred care (PCC) for people living with HIV/AIDS (PLWHA) to improve outcomes and wellbeing. We appraised the evidence of person-centred models of community HIV care delivered or led by trained healthcare professionals and its impact on care outcomes. A systematic review was conducted in line with PRISMA guidance. Six electronic databases (CINAHL, Embase, PubMed, Medline, PsycINFO and Web of Science) were searched from January 1980 to April 2019. We included primary studies of any design of PCC models; for adults aged ≥15 years; that were delivered or led by trained HCP. Data were extracted including study location, design, quality, outcomes measured and effectiveness. Five out of 1393 studies met the inclusion criteria, of which four were from a high-income country and one a lower-middle income country. Of the PCC components (physical, psychological, social and spiritual wellbeing) delivered alongside HIV clinical management, one study delivered 2, two studies delivered 3 and two studies delivered all 4 components. This review highlights the lack of outcome evidence for person-centred HIV care, and of concurrent focus on all domains of concern for PLWHA within interventions. Clear articulation of the meaning, practice of PCC and implementation strategies are needed to meet policy recommendations.

Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.

INTRODUCTION: Self-report is the gold standard for measuring children's health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people < 19 years to participate in valid and reliable self-reporting of their health outcomes. METHOD: PsycInfo, Medline, CINAHL and Embase were searched from 1 January 1990 to 15 March 2020, and citation searching undertaken in Scopus. Articles were included if they were primary research or case reports of ≥ 3 participants reporting the following: recall period, response scale selection, administration modality. Quality was assessed using QualSyst, and results synthesised narratively. This review was conducted and reported according to PRISMA guidelines. RESULTS: 81 of 13,215 retrieved articles met the inclusion criteria. Children < 5 years old cannot validly and reliably self-report health outcomes. Face scales demonstrate better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity. Children prefer computerised measures. Children ≤ 7 years old think dichotomously so need two response options. Those > 8 years old can reliably use a 3-point scale. CONCLUSION: The results of this review have both clinical and research implications. They can be used to inform appropriate choice of PROM for use with CYP in the clinical setting. We also give eight recommendations for future development of self-reported outcome measures for children and young people.

The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV.

BACKGROUND: People living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care. Routine use of patient reported outcome measures can improve outcomes. There is no brief patient reported outcome measure (PROM) that currently reflects the breadth of concerns for people living with HIV. This study aimed to develop and cognitively test a brief novel patient reported outcome measure for use within routine adult HIV care- the "Positive Outcomes" HIV PROM. METHODS: Development followed the COSMIN taxonomy and guidance for relevance and comprehensiveness, and Rothrock guidance on development of valid patient reported outcome measures. The Positive Outcomes HIV PROM was developed by a steering group (people living with HIV, HIV professionals and health services researchers) using findings from a previously reported qualitative study of priority outcomes for people living with HIV. The prototype measure was cognitively tested with a purposive sample of people living with HIV. RESULTS: The Positive Outcomes HIV PROM consists of 23 questions (22 structured, and one open question) informed by the priorities of key stakeholders (n = 28 people living with HIV, n = 21 HIV professionals and n = 8 HIV commissioners) to ensure face and content validity, and refined through cognitive testing (n = 6 people living with HIV). Cognitive testing demonstrated high levels of acceptability and accessibility. CONCLUSIONS: The Positive Outcomes HIV PROM is the first brief patient reported outcome measure reflecting the diverse needs of people living with HIV designed specifically for use in the clinical setting to support patient assessment and care, and drive service quality improvement. It is derived from primary data on the priority outcomes for people living with HIV and is comprehensive and acceptable. Further psychometric testing is required to ensure reliability and responsiveness.

Towards person-centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross-national multi-centre qualitative study with key stakeholders.

OBJECTIVES: People living with HIV (PLWH) have multidimensional concerns requiring person-centred care. Routine use of patient-reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This study sought to identify priority outcomes for PLWH, model current practice, explore views on introducing PROMs into routine care, and devise a model for person-centred care incorporating the PROM. METHODS: A cross-national multi-centre study (London, Brighton and Dublin) was carried out. Semi-structured qualitative interviews with adult PLWH, HIV health care professionals and HIV commissioners (responsible for planning and commissioning services) were performed. Interviews were analysed using thematic and framework analysis. RESULTS: PLWH (n = 28), professionals (n = 21) and commissioners (n = 8) described concerns related to living with HIV across six domains: physical (e.g. pain and gastrointestinal symptoms), cognitive (e.g. memory and sleep), psychological (e.g. anxiety and depression), social (e.g. isolation and intimacy), welfare (e.g. finances and fears regarding change of immigration status), and information (e.g. long-term outcomes) needs. Themes were highly inter-related, impacting across domains of need (e.g. physical and cognitive problems impacting on psychological and social wellbeing). Perceived benefits of using PROMs in routine HIV care included improved person-centredness, patient empowerment, fewer missed concerns, increased engagement with services, and informed planning of services. Potential challenges included heterogeneity of PLWH, literacy, and utility for those who struggle to engage with care. CONCLUSIONS: This study presents a novel model of person-centred care incorporating an HIV-specific PROM. The model reflects priorities of key stakeholders. Explicit use of PROMs in routine HIV care could afford benefits for PLWH, clinical teams and commissioners.

Clinical efficiency in a simulated emergency and relationship to team behaviours: a multisite cross-sectional study.

OBJECTIVE: To identify specific aspects of teamworking associated with greater clinical efficiency in simulated obstetric emergencies. DESIGN: Cross-sectional secondary analysis of video recordings from the Simulation & Fire-drill Evaluation (SaFE) randomised controlled trial. SETTING: Six secondary and tertiary maternity units. SAMPLE: A total of 114 randomly selected healthcare professionals, in 19 teams of six members. METHODS: Two independent assessors, a clinician and a language communication specialist identified specific teamwork behaviours using a grid derived from the safety literature. MAIN OUTCOME MEASURES: Relationship between teamwork behaviours and the time to administration of magnesium sulfate, a validated measure of clinical efficiency, was calculated. RESULTS: More efficient teams were likely to (1) have stated (recognised and verbally declared) the emergency (eclampsia) earlier (Kendall's rank correlation coefficient τ(b) = -0.53, 95% CI from -0.74 to -0.32, P=0.004); and (2) have managed the critical task using closed-loop communication (task clearly and loudly delegated, accepted, executed and completion acknowledged) (τ(b) = 0.46, 95% CI 0.17-0.74, P=0.022). Teams that administered magnesium sulfate within the allocated time (10 minutes) had significantly fewer exits from the labour room compared with teams who did not: a median of three (IQR 2-5) versus six exits (IQR 5-6) (P=0.03, Mann-Whitney U-test). CONCLUSIONS: Using administration of an essential drug as a valid surrogate of team efficiency and patient outcome after a simulated emergency, we found that more efficient teams were more likely to exhibit certain team behaviours relating to better handover and task allocation.