EACS Ageing 2019 Basel and Morepe 9.45 17Th European4 AIDS Conference 1-2=Pre-Frail, ≥3 Frail

Managing older people with HIV: What are the challenges and what can we do about it

Jaime Vera MD PhD Senior Lecturer in HIV and Consultant Progress towards ending the HIV epidemic in the United Kingdom: 2018 report

1. The UNAIDS 90:90:90 targets

The continuum of HIV care illustrates key measures of the HIV patient pathway and provides an opportunity to assess progress towards the Joint United Nations Programme on HIV/AIDS (UNAIDS) 90:90:90 targets of 90% of people living with HIV being diagnosed, 90% of people diagnosed receiving ART and 90% of people on treatment virally suppressed and unable to pass on the infection [15].

The UK met the UNAIDS targets in 2017; 92% (Credible interval (Crl) 88 to 94%) of the estimated 101,600 (CrI 99,300 to 106,400) people living with HIV infection in the UK were diagnosed, 98% of people diagnosed were receiving treatment and 97% of people receiving treatment were virally suppressed (Figure 1). Overall, 87% of people living with HIVUK in the UKcascade were estimated of to have HIV an undetectable care viral load and therefore unable to pass on the infection.

Figure 1: Continuum of HIV care, UK: 2017 UNAIDS 90:90:90 target 100% 92% 100% 90% 87% 99% 90% 81% 73%

50%

93%92% 99%98% 99%97%

0% People living with People diagnosed On treatment Virally suppressed HIV with HIV

PHE 2018 report UK

People livingPeople with HIV with HIV aged 50 and over

1. People aged 50 and over living with HIV

Data available from: http://aidsinfo.unaids.org/ (last accessed September 2017). Progress towards ending the HIV epidemic in the United Kingdom: 2018 report

3. People living with diagnosed HIV

In 2017, 93,385xxiii people (64,472 men and 28,877 women) living with diagnosed HIV infection received HIV care in the UK. This is a 54% increase on the number a decade ago (60,737 in 2008) and is due to effective treatment for HIV prolonging life, as well as ongoing new diagnoses.

The median age of people receiving care increased over the past decade, from 40 years in 2008 to 46 years in 2017. In 2017, more than a third (39%; 36,288/93,385) of people receiving HIV specialist care were aged 50 years and above (Figure 9a).

In 2017, 14% (6,029/42,739) of gay and bisexual men receiving HIV care were from BAME groups, similar to 2008 (12%; 2,994/25,806) (Figure 9b). Among heterosexuals, black African men and women accounted for the greatest proportion of those receiving care (57%; 24,548/42,668), whileHIV 26% (11,058) demographics were of white ethnicity compared to 21% (6,429/30,631) in 2008 (Figure 9c). In 2017, 123 trans people were receiving HIV care in the UK; 62% were from white ethnic groups and 42% were aged between 35-49 years.

Figure 9: People diagnosed with HIV receiving specialist care, UK, 2008 to 2017 a) By age group

15-24 25-34 35-49 50-64 ≥65 100,000 90,000 80,000 70,000 60,000 50,000 Median age 40,000 now 45 years 30,000 20,000 10,000 0 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017

14% 34%

xxiii The overall total includes people who identify in another way and those with gender identity not reported. https://www.gov.uk/government/publications/hiv-in-the-united-kingdom

30 2019 (n=2500; 52% >50 years old)

Lawson unit management team Age-related chronic diseases rises exponentially with age

HIV+ HIV- INCIDENCE

Age related chronic diseases Challenges facing people ageing with HIV

Social isolation Cognitive Medications difficulties (ART and others)

Physical challenges (chronic pain) Age Comorbidities

Mental health Current models of care

Stigma Frailty Cardiovascular Cancer Cognitive decline disease

Geriatric Polypharmacy Chronic kidney disease syndromes

Chronic liver disease Chronic obstructive pulmonary disease Diabetes mellitus Impact of comorbidity and ageing on health-related quality of life in HIV-positive and HIV-negative individuals

Nienke Langebeeka,b, Katherine W. Kooijc, Ferdinand W. Witc,d, Ineke G. Stoltee, Mirjam A.G. Sprangersb, Peter Reissc,d,f, b Pythia T. Nieuwkerk , on behalf of the AGEhIV Cohort Study Group

Background: HIV-infected individuals may be at risk for the premature onset of age- associated noncommunicable comorbidities. Being HIV-positive, having comorbidities and being of higher age may adversely impact health-related quality of life (HRQL). We investigatedØ HIV-positive the possible status contribution was of significantly HIV infection, comorbidities and independently and age on HRQL and depression. associated with worse physical and mental HRQL and Methods: HIV-infected individuals and uninfected controls from the AGEhIV Cohort Studywith were an screened increased for the presence likelihood of comorbidities. of depression. They completed the Short Form 36-item Health Survey to assess HRQL and the nine-item Patient Health Questionnaire to assess depression. Linear and logistic regression were used to investigate to which extentØ higher comorbidities, number aging of and comorbidities HIV infection were was independently independently associated with HRQL and depression. Results:associatedHIV-infected with individuals worse (n physical541) reported quality significantly of life worse physical and ¼ mental HRQL and had a higher prevalence of depression than HIV-uninfected individuals (n 526). A higher number of comorbidities and HIV-positive status were each inde- ¼ pendently associated with worse physical HRQL, whereas HIV-positive status and younger age were independently associated with worse mental HRQL and more depression. The difference in physical HRQL between HIV-positive and HIV-negative individuals did not become greater with a higher number of comorbidities or with higher age. Conclusion: In a cohort of largely well suppressed HIV-positive participants and HIV- AIDS. 2017;31:1471-1481. negative controls, HIV-positive status was significantly and independently associated with worse physical and mental HRQL and with an increased likelihood of depression. Our finding that a higher number of comorbidities was independently associated with worse physical HRQL reinforces the importance to optimize prevention and management of comorbidities as the HIV-infected population continues to age. Copyright ß 2017 Wolters Kluwer Health, Inc. All rights reserved.

AIDS 2017, 31:1471–1481

Keywords: ageing, cohort study, comorbidity, depression, health-related quality of life, HIV infection

aDepartment of Internal Medicine and Infectious Diseases, Rijnstate Hospital Arnhem, Arnhem, bDepartment of Medical Psychology, Academic Medical Centre, cDepartment of Global Health, Academic Medical Centre and Amsterdam Institute for Global Health and Development, dDivision of Infectious Diseases and Centre for Infection and Immunity Amsterdam (CINIMA), eDepartment of Infectious Diseases, Public Health Service of Amsterdam, and fHIV Monitoring Foundation, Amsterdam, The Netherlands. Correspondence to Nienke Langebeek, MSc, Department of Internal Medicine and Infectious Diseases, Rijnstate Hospital Arnhem, PO Box 9555, 6800 TA Arnhem, The Netherlands. Tel: +31 88005 6780; e-mail: [email protected] Received: 21 November 2016; revised: 28 March 2017; accepted: 3 April 2017.

DOI:10.1097/QAD.0000000000001511

• Average age of those with HIV not in the territory of true older age • But increasing problems seen in older adults including: – Cognitive impairment – Complex multimorbidity – Polypharmacy – Mobility decline – Falls – Functional impairment- difficulties of activities of daily living/self-care – Frailty Frailty

Decline in multiple physiological systems resulting in: – An ‘at risk’ state

– Vulnerability to minor stressor events (may trigger crisis)

– Disproportionate changes in health status

– An increased risk of adverse events • Falls, hospital admission, disability, mortality

Physiological reserve Frailty in PWH: Brighton

Number (N) % 95% CI Frailty Frail (scores 3-5) 48 19% 14.6-24.3 status Pre-frail (scores 1-2) 111 44% 37.8-50.1 Robust (scores 0) 94 37% 31.4-43.3 Median age 61 (55-79)

60 47% 39% 40 23% 20 10% 11%

Prevalence (%) Prevalence 0 Low activity Exhaustion Weight loss Weak grip Slow walk Phenotypic criterion (Fried)

Levett T et al , 2016,BHIVA Predictors

Variable Risk of frailty AdjOR (95% CI) p-value

Age (per year) 6% ↑ 1.06 (1.01-1.21) 0.018

Comorbidity count 58% ↑ 1.58 (1.28-1.95) <0.001

Moods/anxiety symptoms 17% ↑ 1.17 (1.10-1.24) <0.001

Not working 8-fold ↑ 8.43 (1.94-36.6) 0.004

Financial insecurity 3-fold ↑ 3.46 (1.54-7.77) 0.003

Current smoker 2-fold ↑ 2.35 (1.00-5.50) 0.049 COPD 4-fold ↑ 4.53 (1.11-18.6) 0.036 Arthritis 4-fold ↑ 3.69 (1.90-8.88) <0.001

Daily pain 3-fold ↑ 3.01 (1.30-7.01) 0.010

No regular exercise 4-fold ↑ 3.85 (1.68-8.84) <0.001 Adjusted for age, gender, comorbidity count and HADS score

Levett T et al , 2016, BHIVA Falls but not frailty are common in people living with HIV using an mHealth platform: issues of ageing within the EmERGE cohort 1 1 1 1 2 3 4 5 3 5 2 6 EmERGE Project has received funding from the European Union’s Horizon 2020 Authors: T Levett , J Vera , C Jones , S Bremner , A Leon , J Begovac , L Apers , M Borges , S Zekan , E Teoflo , F Garcia , J Whetham on behalf of the EmERGE Consortium. [email protected] Research and Innovation Programme under Grant Agreement No: 643736 1Brighton & Sussex Medical School, Brighton, United Kingdom, 2Fundació Clínic per a la Recerca, Barcelona, Spain 3Klinika za Infektivne Bolesti, Zagreb, Croatia 4Instituut Voor Tropische Geneeskunde, Antwerp, Belgium 5Centro Hospitalar de Lisboa Central, Lisbon, Portugal 6Brighton and Sussex University Hospitals NHS Trust, Brighton, United Kingdom

Introduction: Falls but not frailtyResults: are common in people living withFalls: HIV using Ageing of HIV cohorts globally brings new challenges Interim data is presented. 120/940 (13%) participants had fallen in the last year. Conclusions: of age-related comorbidities andan syndromes, mHealth including platform: l 944 individuals issues participated of ageing across fve within European the EmERGEFallers experienced cohort a median of 2 falls (interquartile Ageing issues were relatively uncommon in this 1 1 1 1 2 3 4 5 3 5 2 6 EmERGE Project has received funding from the European Union’s Horizon 2020 Authors: T Levett , J Vera , C Jones , S Bremner , A Leon , J Begovac , L Apers , M Borges , S Zekan , E Teoflo , F Garcia , J Whetham on behalf of the EmERGE Consortium. [email protected] cohort.Research This and Innovation may Programme refect under Grant Agreement both No: 643736 the younger average frailty and falls. These are prevalent1Brighton & in Sussex people Medical living School, withBrighton, Unitedstudy Kingdom, sites 2Fundació (Antwerp, Clínic per a Belgium;la Recerca, Barcelona, Barcelona, Spain 3Klinika Spain; za Infektivne Bolesti,range Zagreb, 1-3), Croatia with 59% (68 / 116) falling recurrently (≥ 2 falls). HIV at earlier ages than seen 4inInstituut the Voor general Tropische population Geneeskunde, Antwerp, BelgiumBrighton, 5Centro HospitalarUK; Lisbon, de Lisboa Portugal;Central, Lisbon, Zagreb,Portugal 6Brighton Croatia). and Sussex University Hospitals NHS Trust, Brighton, United Kingdom age and that those with less complex issues may (1, 2, 3). l Mean age was 44.6 years (SD 9.9), with 33% Fallers were on average 3.1 years older than non-fallers be more inclined to adopt remote healthcare. Introduction: Results: Falls: Frailty and(95% falls CI 1.2-5.1), with a greater proportion aged >50Conclusions: Ageing of HIV cohorts globally brings newaged>50. challenges Interim data is presented. 120/940 (13%) participants had fallen in the last year. Frailty was rare, with pre-frailty seen in 25%. Mobile technology platforms representof age-related a comorbiditiesmethod of and syndromes,l 92% includingwere male, l 944 79% individuals were ofparticipated Caucasian across ethnicity. fve European (44% Fallers versus experienced 31%, p=0.005). a median of Fallers 2 falls (interquartile were more likelyAgeing to issues were relatively uncommon in this streamlining long-term HIV care,frailty yet and theyfalls. These may arefail prevalent Falls in people but livingnot frailtywith arestudy common sites (Antwerp, in people Belgium; living Barcelona, with HIVSpain; usingbe frailrange (5 1-3), versus with 59% 1%) (68 and / 116) pre-frail falling recurrently (43 versus (≥ 2 falls). 22%). cohort. ThisWithout may refect intervention both the younger pre-frailty average has the potential HIV at earlier ages than seen in the general population Brighton, UK; Lisbon, Portugal; Zagreb, Croatia). age and thatto those progress with less to complex frailty. issues may to address broader health issues such as these an mHealth platform: issues of ageing within the EmERGEAll cohort individual frailty criteria except comorbidity werebe more inclined to adopt remote healthcare. Authors: T Levett1, J Vera1, C Jones1, S Bremner1, A Leon2, J Begovac3, L Apers4, M Borges5, S Zekan3, E Teoflo5, F Garcia2, J Whetham6 on behalf of the EmERGE Consortium.Fallers [email protected] were on average 3.1 yearsEmERGE older Project has received thanfunding from the Europeannon-fallers Union’s Horizon 2020 (1, 2, 3). Frailty: l Mean age was 44.6 years (SD 9.9), with 33% Research and Innovation Programme under Grant Agreement No: 643736 1Brighton & Sussex Medical School, Brighton, United Kingdom, 2Fundació Clínic per a la Recerca, Barcelona, Spain 3Klinika za Infektivne Bolesti, Zagreb, Croatia age-related conditions. 4 5 6 more(95% prevalent CI 1.2-5.1), in withthose a greater with proportionfalls. All agedshown >50 in Table 1. InstituutFull Voor Tropischefrailty Geneeskunde, data Antwerp, were Belgium aged>50. Centro available Hospitalar de Lisboa Central, for Lisbon, 891/944 Portugal Brighton and(94%). Sussex University Hospitals NHS Trust, Brighton, United Kingdom Mobile technology platforms represent a method of (44% versus 31%, p=0.005). Fallers were more likely to Frailty was Fallsrare, with occurred pre-frailty in seen 1/8 in of 25%. participants and were more Introduction: l 92% wereResults: male, 79% were of CaucasianFalls: ethnicity. Without intervention pre-frailty has the potential streamlining long-term HIV care, yetAgeingThree they of HIV may cohorts quarters fail globally brings were new challenges robust Interim (74%, data is presented. 663/891); 25% 120/940 (13%)Table participantsbe 1: frailhad fallen (5 inversus the last year. 1%) Conclusions:and pre-frail (43 versus 22%). often recurrent (60%), increasing the risk of harms of age-related comorbidities and syndromes, including l 944 individuals participated across fve European Fallers experienced a median of 2 falls (interquartile Ageing issues were relatively uncommon in this to progress to frailty. Objective: to address broader health issues such as these All individual frailty criteriacohort. This except may refect comorbidity both the younger average were frailtyn=(219/891) and 891 falls. These PWH are pre-frail; prevalent from in peopleFrailty: and living5 Europeanwith 9 frailstudy sites (1%). (Antwerp, countries Belgium; Barcelona, Spain; range 1-3), withRelationship 59% (68 / 116) falling recurrently between (≥ 2 falls). falls and demographic / frailty variables such as fracture. Falls were related to frailty status To estimate the prevalence ofage-related frailty and conditions. falls HIV at earlier ages than seen in the general population Brighton, UK; Lisbon, Portugal; Zagreb, Croatia). more prevalent in thoseage andwith that thosefalls. with All less shown complex issues in Table may 1. (1,Figure 2, 3). 1 shows theFull prevalencefrailty datal Mean were age wasof available44.6 each years (SD frailty 9.9),for with891/944 33% criterion. (94%).Fallers were on average 3.1 years older than non-fallers be more inclined to adopt remote healthcare. Falls occurred in 1/8 of participants and were more 25% pre-frail (95% CI 1.2-5.1), with a greater proportion aged >50 a and older age. Three quarters aged>50. were robust (74%, 663/891); 25% Variable No fallFrailty was rare, with pre-frailtyFalls seen in 25%. p-value among stable people living with HIV engaged with Mobile technology platforms represent a method of l 92% were male, 79% were of Caucasian ethnicity. (44% versus 31%, p=0.005).Table Fallers 1: were more likely to often recurrent (60%), increasing the risk of harms Objective: streamliningFatigue long-term was HIV care, most yet they mayfrequently fail reported (13%). be frail (5 versus 1%) and pre-frail (43 versus 22%). Without intervention pre-frailty has the potential (219/891) pre-frail; and 9 frail (1%). Relationship between fallsto progressand demographic to frailty. / frailty variables b such as fracture. Falls were related to frailty status remote healthcare delivered viaTo estimate a novel the smartphone prevalence of frailtyto address and broaderfalls health issues such as these Frailty: All individual frailtyMean criteria Age except (sd) comorbidity were 44.1 (9.64) 47.3 (11.2) 0.002 Additionally, the presence of geriatric syndromes, age-relatedOnly conditions. 2 participantsFigure had 1 shows>4Full frailtycomorbidities. the data wereprevalence available for 891/944 of each (94%). frailtymore criterion. prevalent in those with falls. All shown in Table 1. Falls occurred in 1/8 of participants and were more and older age. Variable No fall Falls p-valuea application within the EmERGEamong study. stable people living with HIV engaged with Three quarters were robust (74%, 663/891); 25% Table 1: Age over 50 N=731often recurrent (60%),N=114 increasing the risk of harms Objective: Fatigue was most frequently reported (13%). falls and frailty, negatively infuenced individuals’ (219/891) pre-frail; and 9 frail (1%). Relationship between falls and demographic / frailty variables such as fracture. Falls were related to frailty statusb remote healthcare delivered via a Tonovel estimate smartphone the prevalence of frailty and falls Figure 1 shows the prevalence of each frailty criterion. Yes Mean Age (sd) 22444.1 (9.64)(30.6) 47.3 50(11.2) (43.9) 0.002 0.005 Additionally, the presence of geriatric syndromes, Only 2 participants had >4 comorbidities. a and older age. Variable No fall Falls p-value perceptions of ageing well. among stable people living with HIV engaged with Fatigue was most frequently reported (13%). Age over 50 N=731 N=114 application within the EmERGE study. b falls and frailty, negatively infuenced individuals’ remote healthcare delivered via a novel smartphone Only 2 participants had >4 comorbidities. Mean Age (sd) Gender44.1 (9.64) 47.3 (11.2) 0.002 N=729Additionally, the presenceN=114 of geriatric syndromes, Methods: application within the EmERGE study. Age over 50 N=731 Yes N=114 224 (30.6)falls and frailty, negatively50 (43.9) infuenced individuals’0.005 perceptions of ageing well. Yes 224 (30.6) 50 (43.9) 0.005 perceptions of ageing well. FemaleGender 62N=729 (8.5) N=11410 (8.8) 0.924 The multi-centre European EmERGEMethods: study aims Methods: Gender N=729 N=114 Opportunities to explore ageing concerns with The multi-centre European EmERGE study aims Female 62 (8.5)Female10 (8.8) 0.924 62 (8.5)Opportunities to10 explore (8.8) ageing concerns0.924 with The multi-centre European EmERGE study aims Frailty FrailtyN=782 N=108 N=782 N=108 Opportunities to explore ageing concerns with to demonstrate the benefts of a bespoke mHealth to demonstrate the benefts of a bespoke mHealth patients should be retained within mHealth patients should be retained within mHealth platform to enable self-management of HIV in patients Robust 605 (77.4)Frailty57 (52.8) N=782delivered care andN=108 pathways established to link patients should be retained within mHealth to demonstrate the benefts of a bespoke mHealth Pre-frail Robust173 (22.1) 46 (42.6) 605 (77.4) 57 (52.8) in those who have medically stable HIV, thus reducing patients to comprehensive geriatric assessment delivered care and pathways established to link platform to enable self-management of HIV in patients Frail 4 (0.5) Robust5 (4.6) <0.001 605 (77.4) 57 (52.8) platform to enable self-managementface-to-face of HIV consultations. in patients where identifed. delivered care and pathways established to link Frailty criteria Pre-frailPre-frail 173173 (22.1)(22.1) 46 (42.6)46 (42.6) in those who have medically stablein those HIV, who thushave medicallyreducing stable A HIV, cross-sectional thus reducingageing sub-study was embedded Weight loss (n=937) 83 (10.2) 30 (25.0) <0.001 patients to patientscomprehensive to comprehensive geriatric assessment geriatric assessment References: within EmERGE. Participants completed a one-page Fatigue (n=939) 97 (11.8)Frail 29 (24.2) <0.001 4 (0.5) 5 (4.6) <0.001 Frail 4 (0.5)1 Autenrieth CS et a. Global and5 (4.6)regional trends of people living with<0.001 where identifed. face-to-face consultations. questionnaire that assessed: Stairs diffculty 34 (4.2) 18 (15.1) <0.001 where identifed. face-to-face consultations. (n=935) Frailty criteria HIV aged 50 and over. PLOSONE. 2018;13(11):e0207005. Greene M et al. Geriatric Syndromes in Older HIV-Infected Adults. l Frailty using the FRAIL scale (4). This fve-item Walking diffculty Frailty30 (3.7) criteria12 (10.1) 0.002 2 self-report screening tool includes fatigue, issues (n=939) Weight loss (n=937) 83 (10.2) JAIDS. 2015;69(2):161–7.30 (25.0) <0.001 3 Levett TJ et al. Systematic Review of Prevalence and Predictors A cross-sectional ageing sub-study withwas ambulation embedded and stair-climbing, comorbidity Demographic data were available for 6/9 frail NB variable N owingWeight to missing Fatiguedata loss (n=939)(n=937) 8397 (11.8)(10.2) of Frailty in Individuals29 with (24.2) 30Human (25.0) Immunodefciency<0.001 Virus. JAGS.<0.001 References: A cross-sectional ageing sub-studywithin EmERGE. was embedded Participants completed count and a weight one-page loss. Present criteria were individuals: 83.3% were aged >50; all were male. a p-value based on Chi squared unless stated b p-value based on t-test 2016;64(5). Signifcance was taken at 5% level. Autenrieth CS et a. Global and regional trends of people living with summed (range 0-5) and catergorized: 0=robust, Pre-frail and frail groups were combined and compared Stairs diffculty 34 (4.2)4 Morley JE et al. A simple18 (15.1)frailty questionnaire (FRAIL)<0.001 predicts 1 Fatigue (n=939) 97 (11.8) outcomes in middle aged African29 Americans.(24.2) J Nutr Health Aging.<0.001 References: within EmERGE. Participantsquestionnaire completed that a one-page assessed: 1-2=pre-frail, ≥3 frail. to robust individuals. Those with pre-frailty / frailty were (n=935) HIV aged 50 and over. PLOSONE. 2018;13(11):e0207005. 2012;16(7):601–8. 1 Autenrieth CS et a. Global and regional trends of people living with l Falls and their frequency, dichotomised to falls / no more likely to be women (12.5 versus 7.4%; p=0.026) Those with falls,Stairs pre-frailty diffculty and frailty were less 34 (4.2) 18 (15.1) <0.001 2 Greene M et al. Geriatric Syndromes in Older HIV-Infected Adults. l Frailty using the FRAIL scale (4). This fve-item Walking diffculty 30 (3.7)17th European AIDS12 Conference (10.1) www.emergeproject.eu0.002 questionnaire that assessed: falls. Falls were classifed as single or recurrent. and reported greater falls 22.3 versus 8.6%; p<0.001). satisfed with the way they were ageing and more JAIDS. 2015;69(2):161–7. HIV aged 50 and over. PLOSONE. 2018;13(11):e0207005. self-report screening tool includes fatigue, issues There was no association between tendency to frailty likely felt older (n=935)than those(n=939) without. Frailty and falls were examined by location and in Levett TJ et al. Systematic Review of Prevalence and Predictors context of collected demographic and HIV factors. and age, proportion over 50 or ethnicity. 3 2 Greene M et al. Geriatric Syndromes in Older HIV-Infected Adults. l Frailty using the FRAIL scale with (4). ambulation This fve-item and stair-climbing, comorbidity Demographic data were available for 6/9 frail WalkingNB diffcultyvariable N owing to 30missing (3.7) data 12 (10.1) 0.002 of Frailty in Individuals JAIDS. with 2015;69(2):161–7. Human Immunodefciency Virus. JAGS. self-report screening tool includes count and fatigue, weight loss.issues Present criteria were individuals: 83.3% were aged >50; all were male. (n=939)a p-value based on Chi squared unless stated b p-value based on t-test 2016;64(5). summed (range 0-5) and catergorized: 0=robust, Pre-frail and frail groups were combined and compared Signifcance was taken at 5% level. 4 Morley JE et3 al. LevettA simple TJ frailty et questionnaireal. Systematic (FRAIL) Review predicts of Prevalence and Predictors with ambulation and stair-climbing, comorbidity Demographic data were available for 6/9 frail outcomes in middle aged African Americans. J Nutr Health Aging. 1-2=pre-frail, ≥3 frail. to robust individuals. Those with pre-frailty / frailty wereNB variable N owing to missing data of Frailty in Individuals with Human Immunodefciency Virus. JAGS. count and weight loss. Present criteria were a p-value based on Chi squared unless stated b p-value based on t-test2012;16(7):601–8. 2016;64(5). l Falls and their frequency, dichotomisedindividuals: to falls /83.3% no more were likely aged to be women>50; all (12.5 were versus male. 7.4%; p=0.026) Those with falls, pre-frailty and frailty were less Signifcance was taken at 5% level. Morley JE et al. A simple frailty questionnaire (FRAIL) predicts summed (range 0-5) and catergorized: falls. Falls were 0=robust, classifed as singlePre-frail or recurrent. and frail andgroups reported were greater combined falls 22.3 andversus compared 8.6%; p<0.001). satisfed with the way they wereEACS ageing 2019 Basel and morePE 9.45 17th European4 AIDS Conference www.emergeproject.eu 1-2=pre-frail, ≥3 frail. Frailty and falls were examined byto location robust and individuals. in There Those was no associationwith pre-frailty between / frailtytendency were to frailty likely felt older than those without. outcomes in middle aged African Americans. J Nutr Health Aging. context of collected demographic and HIV factors. and age, proportion over 50 or ethnicity. 2012;16(7):601–8. l Falls and their frequency, dichotomised to falls / no more likely to be women (12.5 versus 7.4%; p=0.026) Those with falls, pre-frailty and frailty were less falls. Falls were classifed as single or recurrent. and reported greater falls 22.3 versus 8.6%; p<0.001). satisfed with the way they were ageing and more 17th European AIDS Conference www.emergeproject.eu Frailty and falls were examined by location and in There was no association between tendency to frailty likely felt older than those without. context of collected demographic and HIV factors. and age, proportion over 50 or ethnicity. Frailty in the Context of Ageing

Frailty defnes age-related exhaustion of homeostatic reserves. An individual with frailty is exposed to enhanced vulnerability to stressors, and associated risk of negative health-related outcomes. This geriatric syndrome, comprising biological, psychological and social issues is more prevalent than expected in PLWH compared to HIV-negative matched controls [21].The most common instruments to measure frailty include the Frailty Phenotype [22] and Frailty Index [23]

Feature Frailty Phenotype Frailty Index Based on presence of signs, symptoms Based on presence of diseases, disabilities (pre-disability syndrome) (accumulation of defcits) How to assess Assessed by fve specifc features [22]: A frailty index is calculated based on the number 1. self-reported weight loss (a) of health defcits out of > 30 assessed health 2. self-reported exhaustion (b) defcits [23] 3. low levels of physical activity as measured by Minnesota Leisure physical activity question- Health variables, including signs and symptoms of naire (c) disease, laboratory measures, and self-reported 4. measured 4 m walk speed time (d) data 5. measured grip strength (e) Data routinely collected in medical records can be included if they characterise age-related, acquired health defcits which cover a range of physiologic systems

How to interpret Categorical variables Continuous variables Total score of 5 items: Index ranges from 0 to 1: 0 defcits = ft > 0.25 = ft 1-2 defcits = pre-frail 0.25 - 0.4 = frail 3 + defcits = frail > 0.4 = most frail How to address frailty [24] Promote Comprehensive Geriatric Assessment (CGA), aimed at personalising interventions according to benefts/priorities for a given person through a multidisciplinary diagnostic and treatment process, that identifes medical, psychosocial, and functional limitations aimed at maximising overall health with ageing and the improvement of quality of life Recommendations [25], [26] In PLWH who are frail: 1. Sustain and recover physical function impairment and sarcopenia prescribing physical activity with a resistance training component 2. Address polypharmacy by reducing or deprescribing any inappropriate/superfuous medications, see Prescribing in Elderly PLWH 3. Screen for, and address modifable causes of fatigue 4. For PLWH exhibiting unintentional weight loss, screen for reversible causes and consider food fortif- cation and protein/caloric supplementation 5. Prescribe vitamin D for individuals defcient in vitamin D, see page 62

(a) Self-reported unintentional weight loss was considered present if exceeding 4.5 kg in the last year or 2.3 kg in the last 6 months

(b) Exhaustion is present if the participant answers ‘‘occasionally’’ or ‘‘most of the time’’ to either one of the following statements: During the last week, how often have you felt that (i) everything you did was an effort, or (ii) you could not ‘get going’

(c) Low physical activity was considered present if participant answered ‘yes, limited a lot’ when asked whether their health limits vigorous activities such as running, lifting heavy objects, participating in strenuous sports

(d) Walk speed time, is measured by a 4-meter walking test in usual pace, one trial) A defcit is assigned according to the following gender-specifc criteria – Men: height ≤ 173 cm and speed ≤ 0.6531 m/s; height > 173 cm and speed ≤ 0.762 m/s – Women: height ≤ 159 cm and speed ≤ 0.6531 m/s; height > 159 cm and speed ≤ 0.762 m/s

(e) Maximum grip strength can be assessed using a handheld dynamometer the mean value of three consecutive measurements of the dominant hand (adjusted by sex and BMI quartile based on CHS population [23]): – Men: BMI ≤ 24 kg and strength < 29 kg; BMI 24.1–26 and strength < 30 kg; BMI 26.1–28 and strength < 30 kg; BMI > 28 and strength < 32 kg – Women: BMI ≤ 23 and strength < 17 kg; BMI 23.1–26 and strength < 17.3 kg; BMI 26.1–29 and strength < 18 kg; BMI > 29 and strength < 21 kg

EACS European EACS Guidelines 10.0 PART IV 92 AIDS Clinical Society EACS guidelines 10

Frailty in the Context of Ageing

(a) Self-reported unintentional weight loss was considered present if exceeding 4.5 kg in the last year or 2.3 kg in the last 6 months

https://www.eacsociety.org/files/2019_guidelines-10.0_final.pdf

EACS European EACS Guidelines 10.0 PART IV 92 AIDS Clinical Society Depression' and'anxiety

• Evidence from the United Kingdom (UK) suggests high rates of depression and suicidal ideation among people with HIV. • Positive Voices Survey (2014)1 Q 30% selfQreported depression/anxietyS 17% in the general population Q 32% among men and 25% among women • ASTRA Study (2011J2012)2 Q 50% selfQreported anxiety/depressionS 10% severe Q Significantly higher than in the general population (27%)

2 Suicide'among'people'diagnosed' with'HIV'in' England'and'Wales'compared'to'the'general'population RESEARCH ARTICLE Impact of musculoskeletal symptoms on physical functioning and quality of life among treated people with HIV in high and low resource settings: A case study of the UK and Zambia

Nikolien S. Van de Ven1, Owen Ngalamika2, Kevin Martin1, Kevin A. Davies1,3, Jaime 1,4 H. VeraID * a1111111111 a1111111111 1 Brighton and Sussex University Hospitals NHS Trust, Brighton, United Kingdom, 2 University Teaching Hospital, Lusaka, Zambia, 3 Department of Medicine, Brighton and Sussex Medical School, Brighton, United a1111111111 Kingdom, 4 Department of Global Health and Infection, Brighton and Sussex Medical School, Brighton, a1111111111 United Kingdom a1111111111 * [email protected]

Abstract RESEARCH ARTICLE OPEN ACCESS

Citation: Van de Ven NS, Ngalamika O, Martin K, Impact of musculoskeletal symptoms on Davies KA, Vera JH (2019) Impact of BackgroundPain in people living with HIV and its association with musculoskeletal symptoms on physical functioning physical functioning and quality of life among and quality of life among treated people with HIV in Musculoskeletal symptomshealthcarein people living with HIV resource(PLWH) such as pain, use,joint stiffness, well being and high and low resource settings: A case study of the and fatigue are commonly reported. Prevalence ratesfunctionalof up to 45%, 79% and status88% respec- treated people with HIV in high and low UK and Zambia. PLoS ONE 14(5): e0216787. tively have been reported. However, very little is known about differences in prevalence and https://doi.org/10.1371/journal.pone.0216787 impact of musculoskeletal symptoms on physical functioning and quality of life of PLWH on resource settings: A case study of the UK and a b a Editor: Alan Winston, Imperial College London, effective combinedCarolineantiretroviral A.treatment Sabin(cART), Richardin high and low-resource Hardingsettings., EmmanouilZambia Bagkeris , UNITED KINGDOM b c d Received: September 3, 2018 Methods Kennedy Nkhoma , Frank A. Post , Memory SachikonyeNikolien S. Van, de Ven1, Owen Ngalamika2, Kevin Martin1, Kevin A. Davies1,3, Jaime e f g H. Vera 1,4* a Accepted: April 29, 2019 A cross-sectional study of PLWH on effective cART enrolled from two large urban clinics in ID Marta Bofﬁto , Jane Anderson a1111111111, Patrick W.G. Mallon , Ian Williams , Published: May 13, 2019 the UK and Zambia was conductedh,i in 2016. Eligible participantsa1111111111jhad no history of trauma to k 1 Brighton and Sussex Universlity Hospitals NHS Trust, Brighton, United Kingdom, 2 University Teaching Jaime Vera , Margaret Johnson , Daphne Babalis andHospital, AlanLusaka, WinstonZambia, 3 Department of Medicine, Brighton and Sussex Medical School, Brighton, United the joints within 4 weeks of recruitment, or documented evidence of previous rheumatic dis- Copyright: © 2019 Van de Ven et al. This is an open a1111111111 Kingdom, 4 Department of Global Health and Infection, Brighton and Sussex Medical School, Brighton, access article distributed under the terms of the ease. Current musculoskeletal symptoms, functional ability, anda1111111111health-related quality of life United Kingdom Creative Commons Attribution License, which were evaluated using the healthObjective:assessmentWe describe(HAQ) theand prevalencequality-of-lifea1111111111 of painshort andform its(SF-36) associations with healthcare * [email protected] permits unrestricted use, distribution, and self-reported questionnaires.resource utilization and quality-of-life. reproduction in any medium, provided the original Design: The POPPY Study recruited three cohorts: older people living with HIV author and source are credited. (PLWH; 50 years, n 699), younger demographically/lifestyle similar PLWH (less Results ! ¼ Data Availability Statement: The full anonymized than 50 years, n 374) and older demographically/lifestyle similar HIV-negativeAbstract ( 50 ¼ OPEN ACCESS ! dataset for this project has been deposited in the 214 patients were enrolledyears,(108:UKn and304)106:Zambia). people from AprilParticipants 2013 tofrom FebruaryZambia 2016.were youn- University of Sussex Research repository ¼ ger (47 vs 44 years) and hadMethods:significantlyCurrentlower painCD4 andcounts pain-related(640Citation:vs 439Van healthcaredecells/mLVen NS, Ngalamika usep = 0.018) wasO, Martin collectedK, via a self- (figshare), as part of the University’s Research compared to those from thereportedUK, while questionnaire.the UK group Logistichad lived regressionDavieswith HIVKA, Veralonger assessedJH (2019)(11 between-groupImpactvs 6 of differencesBackground in Data Management Policy under the DOI: 10.25377/ the prevalence of pain in the past monthmusculos andkeletal currentsymptoms painon afterphysical controllingfunctioning for potential sussex.7931201 where all data for this study can years; p<0.001) and reported more comorbidities than the Zambian group (66% vs 26%; Musculoskeletal symptoms in people living with HIV (PLWH) such as pain, joint stiffness, confounders. Associations between currentand quality painof life andamong healthcaretreated people resourcewith HIV in use, reported be accessed without restriction. p<0.001). Musculoskeletal pain was common in both groups (UK:69% vs Zambia:61% p = and fatigue are commonly reported. Prevalence rates of up to 45%, 79% and 88% respec- joint problems, depressive symptoms,high quality-of-lifeand low resource andsettings: functionalA case study statusof the were assessed UK and Zambia. PLoS ONE 14(5): e0216787. Funding: The study was funded by Brighton and 0.263) but no significant differencesin PLWH usingin physical Mann–Whitneyfunctional capacityU and chi-squaredbetween the tests.groups tively have been reported. However, very little is known about differences in prevalence and Sussex Medical School. The funders had no role in were observed. However, the UK group had significantly worsehttps://doqualityi.org/10.1371/jof life measuremenournal.pone.0216787ts Results: Pain in the past month was reported by 473 out of 676 (70.0%) olderimpact PLWH,of musculoskeletal symptoms on physical functioning and quality of life of PLWH on 224 out of 357 (62.7%) younger PLWHEditor: andAlan 188Winston out, ofImperial 295College (63.7%)London, older HIV-negativeeffective combined antiretroviral treatment (cART) in high and low-resource settings. controls (P 0.03), with current painUNITED reportedKINGDOM in 330 (48.8%), 134 (37.5%) and 116 ¼ (39.3%), respectively (P 0.0007). Older PLWH were more likely to experience current ¼ Received: September 3, 2018 Methods PLOS ONE | https://doi.org/10.1371/journal.pone.0216787 May 13, 2019 pain, even after adjustment for confounders. Of those with pain1 / in13 the past month, 56 out of 412 (13.6%) had missed daysAccepted: of workApril or29, study2019 due to pain, and 520 (59%)A cross-sectional had study of PLWH on effective cART enrolled from two large urban clinics in seen a doctor about their pain. PLWHPublished: experiencingMay 13, 2019 current pain had more depressivethe UK and Zambia was conducted in 2016. Eligible participants had no history of trauma to symptoms, poorer quality-of-life on all domains and greater functional impairment,the joints within 4 weeks of recruitment, or documented evidence of previous rheumatic dis- regardless of age group. Copyright: © 2019 Van de Ven et al. This is an open access article distributed under the terms of the ease. Current musculoskeletal symptoms, functional ability, and health-related quality of life Conclusion: Even in the effective antiretroviral therapy era, pain remains common in Creative Commons Attribution License, which PLWH and has a major impact on quality-of-life and associated healthcare andwere societalevaluated using the health assessment (HAQ) and quality-of-life short form (SF-36) permits unrestricted use, distribution, and costs. Interventions are required to assist clinicians and PLWH to proactivelyself-reported manage questionnaires. reproduction in any medium, provided the original pain. Copyright ß 2018 Wolters Kluwer Health, Inc. All rights reserved. author and source are credited. Results AIDS 2018,Data Availabilit32:2697–2706y Statement: The full anonymized dataset for this project has been deposited in the 214 patients were enrolled (108:UK and 106:Zambia). Participants from Zambia were youn- Keywords: depressive symptoms,University HIV, healthcareof Sussex Research resourcerepository use, pain, qualityger (47 ofvs 44 years) and had significantly lower CD4 counts (640 vs 439 cells/mL p = 0.018) life,(figshare) well-being, as part of the University’s Research compared to those from the UK, while the UK group had lived with HIV longer (11 vs 6 Data Management Policy under the DOI: 10.25377/ sussex.7931201 where all data for this study can years; p<0.001) and reported more comorbidities than the Zambian group (66% vs 26%; aInstitute for Global Health, UCL, bFlorence Nightingalebe Faculty,accessed without Cicelyrestriction. Saunders Institute, Kings Collegep<0.001). London,MusculoskeletalcCaldecot pain was common in both groups (UK:69% vs Zambia:61% p = Centre, King’s College Hospital, dUK Community Advisory Board (UK-CAB), eSt. Stephen’s Centre, Chelsea and Westminster Funding: The study was funded by Brighton and 0.263) but no significant differences in physical functional capacity between the groups Hospital, fHomerton University Hospital, London, UK, gHIV Molecular Research Group, School of Medicine, University College Dublin, Dublin, Ireland, hElton John Centre, Brighton andSussex SussexMedical UniversitySchool. The Hospital,funders hadiBrightonno role in andwere Sussexobserved. MedicalHowever, School, the UK group had significantly worse quality of life measurements Brighton, jIan Charleson Day Centre, Royal Free NHS Trust, kImperial Clinical Trials Unit, Imperial College London, and lSt. Mary’s Hospital London, Imperial College Healthcare NHS Trust, London, UK. Correspondence to Caroline A. Sabin, Centre for Clinical Research, Epidemiology, Modelling and Evaluation, Institute for Global Health, UCL, Royal Free Campus, Rowland Hill Street,PLOS LondonONE NW3| https://doi.or 2PF, UK.g/10.1371/journal.pone.0216787 May 13, 2019 1 / 13 Tel: +207 7940500 x34752; e-mail: [email protected] Received: 2 May 2018; accepted: 31 July 2018.

DOI:10.1097/QAD.0000000000002021

ISSN 0269-9370 Copyright Q 2018 Wolters Kluwer Health, Inc. All rights reserved. 2697 Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved. A response: The silver clinic: a clinical service for OPWH with complex issues Current standard of care for complex Older-PWH

HIV annual health check GP (HIV nurse)

HIV clinic Hospital Specialist and (HIV Doctor) social care services twice a year, 20 minutes Silver clinic

HIV annual health Mobility: falls, physical activity check Mind: cognitive function (HIV nurse) Medications: polypharmacy Multicomplexity: multimorbidity, psychosocial issues Matters most: patients’ health outcome goals an preferences Silver clinic (CGA)

• HIV physician, • Geriatrician • HIV nurse HIV • HIV pharmacy support Individualised care plan (once a month, 40 min per patient)

Referral based on multi-complexity

HIV clinic Hospital specialists (HIV physician) and social care GP twice a year, 20 minutes services Silver clinic

Lying/standing BP Respiratory Gastrointestinal/rectal Pre-assessments: Urinalysis bleeding/lumps CNS+Pharmacy Mobility/falls/use of mobility Weight aids? • PROMS: Bloods Self care issues? Ø EQ-5D-5L, OPQOL-brief, HIV PROM Slow gait speed Maintaining safe environment • Frailty: frailty scale Timed up and Go test Mental health /mood/PH9 score • Physical activity: RAPA PRISMA questionnaire Sexual health/relationships • Mental Health: HADS • Medication review: medication Quality of life questionnaire Urological symptoms/continence passport* Number of co-morbidities Housing issues/social • Silver clinic proforma What are the main areas of Financial • Bloods: PSA etc concern for the patient? Support Visual/hearing problems network/hobbies/interests 30 CNS /memory problems? Medications minutes

* http://clahrc-northwestlondon.nihr.ac.uk/resources/mmp) Silver clinic

Pre-assessments: CNS+Pharmacy

• PROMS: Medical assessment Ø EQ-5D-5L, OPQOL-brief, HIV (CGR) PROM • Frailty: frailty scale • Interview: patient and Individualised care plan • Physical activity: RAPA carer • Mental Health: HADS • HIV issues • Cognition: MOCA • Physical examination • Medication review: medication passport* • Silver clinic proforma • Bloods: PSA etc

40 30 minutes minutes

* http://clahrc-northwestlondon.nihr.ac.uk/resources/mmp) Silver clinic

Indications for referral: • Patients over 50 years old • Multiple comorbidities • Polypharmacy • Complex issues: falls, frailty, social isolation

Objectives: üPolypharmacy and medication related problems (DDI) üOptimising the management of comorbidities üSupporting the management of social and psychological issues üFormulate health interventions: • Medical: investigations, referral to other specialties • Social: occupational therapy, social services • Psychological: referral to mental health • Others: exercise interventions, peer support groups üImproving quality of life with old age: patient reported outcomes (PROMS) Predictors

Variable Risk of frailty AdjOR (95% CI) p-value

Age (per year) 6% ↑ 1.06 (1.01-1.21) 0.018

Comorbidity count 58% ↑ 1.58 (1.28-1.95) <0.001

Moods/anxiety symptoms 17% ↑ 1.17 (1.10-1.24) <0.001

Not working 8-fold ↑ 8.43 (1.94-36.6) 0.004

Financial insecurity 3-fold ↑ 3.46 (1.54-7.77) 0.003

Current smoker 2-fold ↑ 2.35 (1.00-5.50) 0.049 COPD 4-fold ↑ 4.53 (1.11-18.6) 0.036 Arthritis 4-fold ↑ 3.69 (1.90-8.88) <0.001

Daily pain 3-fold ↑ 3.01 (1.30-7.01) 0.010

No regular exercise 4-fold ↑ 3.85 (1.68-8.84) <0.001 Adjusted for age, gender, comorbidity count and HADS score

Levett T et al , 2016, BHIVA

“150 minutes of moderate-intensity aerobic PA throughout the week or at least 75 minutes of vigorous-intensity aerobic PA throughout the week, or an equivalent combination of moderate- and vigorous- intensity activity" Physical activity if people with HIV in BrightonAIDS CARE 5 Table 2. Rapid assessment of physical activity (RAPA), EQ-5D-5L health questionnaire and WEMWBS questionnaire responses in PWH and HIV negative participants. Variable PWH (110) HIV negative (110) p-Value RAPA 1 score, n (%) 1: Rarely or never does any physical activities 7 (6.4%) 1 (0.9%) 0.043 2: Does some light or moderate physical activities, but not every week 5 (4.5%) 3 (2.7%) 3: Does some light physical activity every week 16 (14.5%) 7 (6.4%) 4: Does moderate physical activities every week, but less than 30 minutes a 20 (18.2%) 18 (16.4%) day or 5 days a week 5: Does vigorous physical activities every week, but less than 20 minutes a 7 (6.4%) 10 (9.1%) day or 3 days a week 6: Does 30 minutes or more a day of moderate physical activities, 5 or more 29 (26.4%) 29 (26.4%) days a week 7: Does 20 minutes or more a day of vigorous physical activities, 3 or more 26 (23.6%) 42 (38.2%) days a week RAPA 2 score, n (%) 0: Does not do activities to increase muscle strength or ﬂexibility at least 56 (51.4%) 37 (33.9%) 0.013 once a week 1: Does activities to increase muscle strength, once a week or more 15 (13.8%) 25 (22.9%) 2: Does activities to improve ﬂexibility, once a week or more 18 (16.5%) 13 (11.9%) 3: Both 1 and 2 20 (18.3%) 34 (31.2%) WEMWBS Score Mean (standard deviation) 47.26 (12.02) 51.17 (9.07) 0.007 EQ-5D-5L DescriptiveOnly Median50% (range)of PWH meet the recommendation for0.922 PA (− 0.077vs –64%1.000) in 0.922 HIV (0.652- –1.000) 0.006 Score EQ-VAS Median (range) 80 (15–100) 80 (30–100) 0.596

MartinMobility, K et nal (%)AIDS CARE https:// Nodoi.org problems/10.1080/09540121.2019.1576848 walking about 77 (70.6%) 102 (92.7%) <0.001 Slight problems walking about 16 (14.7%) 6 (5.5%) Moderate problems walking about 11 (10.1%) 2 (1.8%) Severe problems walking about 3 (2.8%) 0 (0.0%) Unable to walk about 2 (1.8%) 0 (0.0%) Self-care, n (%) No problems washing or dressing self 96 (88.1%) 110 (100%) <0.001 Slight problems washing or dressing self 5 (4.6%) 0 (0.0%) Moderate problems washing or dressing self 6 (5.5%) 0 (0.0%) Severe problems washing or dressing self 2 (1.8%) 0 (0.0%) Unable to wash or dress self 0 (0.0%) 0 (0.0%) Usual Activities, n (%) No problems doing usual activities 74 (67.9%) 100 (90.9%) <0.001 Slight problems doing usual activities 13 (11.9%) 8 (7.3%) Moderate problems doing usual activities 15 (13.8%) 2 (1.8%) Severe problems doing usual activities 5 (4.6%) 0 (0.0%) Unable to do usual activities 2 (1.8%) 0 (0.0%) Pain/discomfort, n (%) No pain or discomfort 57 (52.3%) 77 (70.0%) <0.001 Slight pain or discomfort 28 (25.7%) 29 (26.4%) Moderate pain or discomfort 14 (12.8%) 4 (3.6%) Severe pain or discomfort 7 (6.4%) 0 (0%) Extreme pain or discomfort 3 (2.8%) 0 (0%) Anxiety/Depression, Not anxious or depressed 50 (45.9%) 54 (49.1%) 0.388 n (%) Slightly anxious or depressed 30 (27.5%) 33 (30.0%) Moderately anxious or depressed 18 (16.5%) 19 (17.3%) Severely anxious or depressed 9 (8.3%) 4 (3.6%) Extremely anxious or depressed 2 (1.8%) 0 (0%)

Table 3. Binary logistic regression model predicting whether Multiple linear regression predicting WEMWBS study participants meet WHO physical activity requirements scores based on HIV status, age, if they have ever smoked, EQ-5D-5L descriptive score, EQ-VAS, if they are currently working, if they A linear regression model was created to predict have a chronic physical co-morbidity and if they are university WEMWBS scores from age, positive HIV status, RAPA educated. 1 score, the presence of chronic physical co-morbidities, Odds 95% Conﬁdence Independent variable Ratio Intervals p-Value a history of mental health issues, relationship status, if HIV Status: Positive 0.507 0.265–0.970 0.040 university educated, if currently working, if had ever Age (years) 0.996 0.972–1.020 0.733 smoked, EQ-5D-5L descriptive scores and EQ-VAS Current or ex-smoker 1.801 0.976–3.321 0.060 EQ-5D-5L descriptive score 2.406 0.281–20.58 0.423 scores (Table 5). EQ-VAS 1.019 0.999–1.039 0.062 The total variance explained by this model was 44.7% Currently employed 1.582 0.751–3.333 0.228 (p < 0.001). Being in a relationship (beta = 0.115, p = Presence of a physical 1.462 0.754–2.837 0.261 co-morbidity 0.043), EQ-5D-5L descriptive scores (beta = 0.329, p < History of mental illness 1.854 0.903–3.805 0.092 0.001) and EQ-VAS scores (beta = 0.223, p = 0.001) Dependent Variable = Meeting WHO physical activity requirements (RAPA 6 or 7) were associated with higher levels of mental well-being. Benefits of physical activity in PWH (aerobic/resistance/yoga)

Montoya et al, AIDS 2019, 33:931–939 Barriers and facilitators for CBE in PWH

Facilitators Barriers Motivators

• Structured exercise • Lack of knowledge of how to • Enjoyment with exercise routine with specific exercise safely Periods of Social benefits (eg., exercise guidelines physical or mental illness creating friendships) (eg., fatigue, anxiety, • Low cost of program depression) • Recommendation to exercise from health care • Group-based exercise • Negative life event providers that provides social interaction and • Parenting or employment • Reduce side-effects of support responsibilities resulting in medications lack of time to exercise • Guidance on exercise Falling out of exercise • Reduce or prevent onset of safety from routine comorbidities or disability knowledgeable health care or fitness • Cost of gym membership professionals

Li et al, DOI: 10.1177/2325957416686836 Positive living program

Exercise class Self-management (open program) program

-Goal setting Once weekly supervised -Mental health group exercise: -Social isolation Individualised exercise plan -Confidence and quality of life

-Sleep management -Flexibility and balance -Tai chi -CVD exercise -Mindfulness -Resistance -Healthy diets -Neuromotor exercise -Living with HIV Q&A

Supported by a Gilead Fellowship to J Vera Brown et al, AIDS CARE, 2016 http://dx.doi.org/10.1080/09540121.2016.1191611 Montoya et al, AIDS 2019, 33:931-939

Health Management Team

Name ………………………………………………. Date Start…………. Date Finish………….

Progress Goal One Goal Two Goal Three Goal Four Goal Five Goal Six

Goal Description

-2

-1 What can you do now………………..

0 Expected level of achievement

+1 Further Achievement

+2 Even further Achievement

How Important is this goal to you?

Comments

Newsleter Date HIV and Physical Actvity Incorporatng physical actvity into community-based HIV organizatons

Background

Recommendatons for health.3 Several Canadian physical actvity indicate organizatons are dedicat- that adults in Canada ed to encouraging physical should partcipate in 150 actvity throughout the minutes of moderate to lives of people in Canada.4,5 vigorous intensity physical Community- based HIV 1 actvity each week. Physi- organizatons and ftness centres also have an im- cal actvity has benefts for portant role to play in promotng physicalü1 class actvity a week…. soon twice a week people of all ages which people living with HIV. üLots of equipment include improved learning ü45 minutes max 6 people per class and long-term memory, ü1 physio and 2 facilitators (trained Beacon staff) lower risk of chronic dis- üEach class followed by tea and or food ease, and increased life Issue expectancy, among other advantages. For people Despite the known benefts and natonal-level initatves, less than 20% of living with chronic health adults in Canada partcipate in the recommendedOpen amountaccess- assessments of physical actvi-of goals at week 10 6,7 conditons, physical actvity ty. People living with HIV have been found to partcipate in physical actv- 8,9 can help with managing ity at even lower rates than the general populaton. Reasons for de- symptoms, slow down the creased partcipaton can be atributed, at least partally, to various individ- progression of illness, and ual and social barriers that people living with HIV may experience such as prevent development of pain, limited social support, fnancial constraints, accessibility concerns, additonal chronic condi- and fear of stgma. People living with HIV ofen live with more comorbid tons.2 Accordingly, physical chronic health conditons than the non-HIV infected populaton.10,11 Along actvity is considered to be with this burden of chronic health conditons, women living with HIV are a low-cost way to promote especially likely to face barriers as a result of their HIV status. chronic disease preventon and to encourage overall

Healthy longer project Name: Start Date Description Number of repetitions and / or weights used Exercise Week 1 Week 2 Week 3 Week 4 Week 5 Week 6 Week 7 Week 8 Week 9 Week 10 Date: Date: Date: Date: Date: Date: Date: Date: Date: Date:

Warm up (please tick) Side bends with weight Single arm dumbbell snatch Step ups Wall push ups TB pull down TB low row DB abduction DB bicep curl Chair Ex. MB overhead Chair Ex. MB twists Heel to toe walk - forwards Heel to toe walk – backwards Single leg stand Monster walk Side Walk Tandem stance throw and catch Single leg throw and catch Relaxation (please tick)

Name: ………………………………………………………. Sessions Attended: /20 Hospital ID: ………………………………………………. Start Date: Finish Date:

Week 0 Week 10 Does this patent consent to Height being contacted int eh future Weights by telephone or email, for Resting heart rate follow up and research purposes relating to the class? Yes No Goals completed Yes No Yes No

Disability: üAnthropometric WHODAS .012. Self esteem Week 0 Week 10 Complex sum score üDisability Function 5 x sit to stand Week 0 Week 10 Time (seconds) üFunction

Timed Up and Go Week 0 Week 10 TUG üMobility

Sub maximal exercise test 6 minute walk test Week 0 Week 10 üFexibility Time completed Heart rate Pre test: Post test: Pre test: Post test: ü SaO2 Saturations Pre test: Post test: Pre test: Post test: Frailty Total Distance Comments ü Quality of life Flexibility and frailty status Timed Up and Go Week 0 Week 10 TUG Frailty status (fried)

Quality of Life FAH Week 0 Week 10 Physical well being Emotional Functional / global Social well being Cognitive Total

REFERRAL FORM – Physiotherapy Exercise programme Please send completed referral form securely to: [email protected] Client Information Client Name: DOB: How do I refer a SB Number: Clinic No: Address: patient? Gender: Ethnic Origin: Telephone Phone No: Preferred Contact: Consent to leave answerphone message: Yes No Consent to Text messages: Yes No ------GP Name and address: • Open to all patients GP Phone No. Referrer’s details: Referring Clinic / Service: Referrer Name and contact details: • Referral process: Consent to referral: Yes No – Health care professionals: Reason for Referral Reason for referral: T drive: specialist clinic: silver clinic: positive living program Primary impairment: Please complete referral criteria below. Impaired Mobility Side effects of HIV and/or treatments – Patients: Cardiovascular risks Side effects of cancer and/or treatments Neurological challenges Disclosure related challenges https://www.sussexbeacon.org.uk/s Multi-morbidity (≥2 chronic conditions) Challenges related to social participation Frailty Challenges to community life ervices-we-provide/positive-living- Pain or difficulty with movements of Sedentary Lifestyle joints programme/ Mental health needs

If not relevant to the referrer, has the service user checked with their Consultant or GP or relevant medical professional, that they are fit to take part in this programme or current referrer? If not please make the service user aware that they will need to do this before taking part. Please do not hesitate to contact us to talk discuss your referral. Please contact Hattie Yannaghas, Senior Project Coordinator, Health Management Team 01273 694222 or [email protected] 10 Bevendean Road, Brighton, Bn2 4DE www.sussexbeacon.org.uk Barriers andThe Positivefacilitators Living programme for CBE in PWH

• Positive fitness classes: 19 • Total attendances in this period: 55 • 10 are currently assessed • 9 men • 2 women • 8 out of 10 are over 50

• 2 of these have attended over 10 classes. Both have shown significant improvement in all areas. Research Pete* has been attending the classes for nine Promoting positive living weeks. through physiotherapy A new exercise programme The Positive Living Programme at “I get to meet people and it’s a sociable thing is helping to address the Sussex Beacon provides people with HIV the opportunity to participate for me. It is just a friendly room with friendly physical, mental and in a physiotherapy supervised group social health related based on individualised exercises, in a supportive and friendly environment. people. I’ve been a member at gyms before challenges faced by After being referred to the programme, people living with HIV. people are offered an assessment to but I never enjoyed it as it’s been too help determine the exercises they can do in the class and establish some practical goals. The classes, which competitive. It’s not like that here – we’re involve exercises using an exercise bike, weights, resistance bands and helping each other, not competing against ﬂoor mats, have been running every Wednesday for 1.5 hours at the Sussex Beacon since March this year. each other.” The programme was developed in collaboration by Dr Jaime Vera, Senior Lecturer in HIV Medicine and Honorary Consultant Physician at BSMS, and Hattie Yannaghas, Senior Project Tim*, who has been coming for six weeks, Coordinator at the Sussex Beacon. “I have been a diabetic for 10 years and my condition flared up again recently. This programme was recommended to me and it has been great. What I really like is the class size – I’ve joined gyms before and felt lost, but here you can talk with the instructors and really benefit from their expertise.”

14 BSMS Pulse Autumn/Winter 2019

Acknowledgements

Hattie Yannaghas Bill Puddicombe Sarah Silberston Silver Clinic Team Natalie St Cair-Sullivan Kelly O'Brien Darren Brown Introducing the “fve tmes sit to stand” test into a group rehabilitaton interventon Claire Hebron for adults living with HIV in the United Kingdom

Bettina Karsten D.Brown1, K.Neate1, J.Mugambwa1, AM.Novis2, R.Harding3, M.Nelson4,5, M.Bower5,6 1. Chelsea and Westminster Hospital NHS Foundation Trust, Physiotherapy Department 2. Kings College London, Depertment of Physiotherapy Fernando Naicero 3. Kings College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitaiton 4. Chelsea and Westmister Hospital NHS Foundation Trust, Department of HIV Medicine 5. Imperial College London, School of Medicine Rehabilitation Class 6. Chelsea and Westminstr Hospital NHS Foundation Trust, National Centre for HIV Oncology Tania Knights www.chelwest.nhs.uk/HIVrehab @darrenabrown @ChelWestTherapy @ChelWestFT @Physio_KCL @CSI_KCL @ImperialMed

Background: Results: A physiotherapy-led group rehabilitaton interventon for adults living with HIV; the Kobler 66 patents atended over 12-months; male (73%, n=48), mean age 55 years (range Rehabilitaton Class1, combines twice weekly physiotherapy supervised exercise and HIV 40-78), mean CD4 689, undetectable viral load 92% (n=59/64). FTSTS was specifc educaton, to improve locomotor performance, physical functon and quality of life completed during 99% (875/888) of atendances. Median FTSTS baseline score among those completng post-interventon measurements. Existng measurements 13.3s (range 6.6-64), with 47% (n=31) not requiring upper limb support to https://www.youtube.com/watch?v=t0Zyxcompleted at week-0 and 10, present tme and space burden,- with low numbers completng complete. Median 5 (range 1-20) atended sessions within 10-weeks, with 28 [email protected] 1 pVGFc post-interventon measurements . Identfcaton of appropriate measures is required for patents atending near week-10. Adherence achieved by 33% (n=22), atending service improvement; to minimise burden and optmise data collecton when accomodatng median 12 sessions (range 8-20), scored baseline FTSTS 12.5s (range 6.9-34) with for potental fuctuatons in atendance dependent on episodes of disability2, whilst change over tme median 7.0s (range 5.0-14.2) (p=0.0018) and median promotng return to exercise3. Measuring chair-rise performance is supported as a functonal improvement 5.3s (range 1.8-28.5). “Non-adherent” atending near week-10 measure among people living with HIV4. “Five tmes sit to stand” (FTSTS) test is a functonal (n=10) atended median 4 sessions (range 2-7), scored baseline FTSTS 16.15s performance measure of lower extremity strength and balance indicatng falls risk5,6, (range 9.4-28.3), change over tme median 10.35s (range 6.1-18.0) (p=0.003) and measures disability6 and is recommended to support standard HIV care4. median improvement 6.5s (range 0.3-18.3). No signifcance diference between baseline FTSTS and median improvement between “adherent” and “non-adherent” atending near week-10. Signifcant improvement was observed in those progressing to no upper limb support to complete FTSTS post-interventon (p=0.0016). Open-access beyond 10-weeks was utlised by 39% (17/44) “non-ad- Purpose: herent” and 77% (17/22) “adherent. “Adherent “ atended median 19 sessions We trialled the FTSTS test to determine feasibility and efectveness measuring change of (range 1-57) and “non-adherent” atended 2 sessions (range 1-30) beyond functonal performance. Secondary objectves aimed to identfy longitudinal atendance with 10-weeks (p=0.001). open-access beyond 10-weeks. Conclusion: The FTSTS showed excellent compliance indicatng low burden. Baseline FTSTS Methods: Kobler Rehabilitaton Class scores demonstrate worse performance compared to community dwelling older From October 2015, we performed a 12-month trial of FTSTS at every atendance, during Patent Informaton Leafet adults7 and Parkinson’s disease8. Sub-optmal programme adherence was routne delivery of the Kobler Rehabilitaton Class. We determined test compliance, baseline observed, with “adherent” and “non-adherent” achieving signifcant change over performance and change over tme near week-10 (between 18-24 sessions), for “adherent”; tme in FTSTS when atending near week-10. Improvement in FTSTS score in the atending ≥8/20 sessions, and “non-adherent”. We determined proporton of longitudinal “adherent” and “non-adherent” exceeded minimal clinically important diference atendance beyond 10-weeks. for COPD9, vestbular disorders10 and older adults11. With open-access “adherent” atended signifcantly more sessions than “non-adherent” beyond week-10.

References: 1. D Brown, A Clafey, R Harding. Evaluaton of a physiotherapy-led group rehabilitaton interventon for adults living with HIV: referrals, adherence and outcomes. AIDS Care, 2016 Dec;28(12):1495-1505 2. KK O’Brien, A Bayoumi, C Strike et al. Exploring disability from the perspectve of adults living with HIV/AIDS: Development of a conceptual framework. Health Qual Life Outcomes, 2008 Oct,6:76 3. C Montgomery, K Henning, S Kantarzhi et al. Experiences partcipatng in a community-based exercise programme from the perspectve of people living with HIV: a qualitatve study. BMJ Open, 2017 Apr;7(4) Implicatons: 4. L Richert, M Brault, P Mercie et al. Decline in locomotor functons over tme in HIV-infected patents. AIDS, 2014 Jun, 28(10):1441-1449 5. S Buatois, C Perret-Guillaume, R Gueguen et al. A simple clinical scale to stratfy risk of recurrent falls in community-dwelling adults aged 65 years and older. Phys Ther 2010 Apr;90(4):550-560 The FTSTS is a suitable functonal performance measure that could support 6. F Zhang, L Ferrucci, E Culham et al. Performance on fve tmes sit-to-stand task as a predictor of subsequent falls and disability in older persons. J Ageing Health, 2013 Apr;25(3):478-492 #KoblerRehabClass 7. R Bohannon, M Shove, S Barreca et al. Five-repetton sit-to-stand test performance by community-dwelling adults: A preliminary investgaton of tmes, determinants, and relatonship with self-reported physical performance. Isokinetcs and Exercise Science 2007;15:77-81 service improvement and future longitudinal analysis. All patents achieved 8. R Duncan, A Leddy, G Earhart. Five tmes sit-to-stand test performance in Parkinson’s disease. Arch Phys Med Rehabil, 2011 Sep;92(9):1431-1436 9. S Jones, S Kon, J Canavan et al. The fve-repetton sit-to-stand test as a functonal outcome measure in COPD. Thorax, 2013 Nov;68(11):1015-1020. #RehabHIV improvements in chair rise tme, indicatng the value in atending some sessions 10. B Mereta, S Whitney, G Marchet et al. The fve tmes sit to stand test: responsiveness to change and concurrent validity in adults undergoing vestbular rehabilitaton. J Vestb Res, 2006;16(4-5):233-243 11. A Goldberg, M Chavis, J Watkins et al. The fve-tmes-sit-to-stand test: validity, reliability and detectable change in older females. Ageing Clin Experi Res, 2012 Aug;24(4):339-344 and open-access allowing atendance depending of episodes of disability.