The Posi)ve Perspec)ves Study. Simone Marcotullio 22 Se0embre 2017, Roma

Transcription

1 The Posi)ve Perspec)ves Study Simone Marcotullio 22 Se0embre 2017, Roma

2 A Murungi, 1 B Spire, 2 M Muchenje, 3 A Namiba, 4 K Parkinson, 5 S Marcutullio, M Krehl, 7 B Allan, 8 Y Punekar, 1 A de Ruiter, 1 S Barthel, 9 J Koteff, 10 B Young, 11 A Ustianowski 12 1 ViiV Healthcare, Brentford, UK; 2 French National Institute for Medical Research (INSERM), Paris, France; 3 Women s Health in Women s Hands Community Health Centre, Toronto, ON, Canada; 4 Salamander Trust, London, UK; 5 Beacon Project, St Louis, MO, USA; Nadir Onlus, Rome, Italy; 7 European AIDS Treatment Group, Germany; 8 Living Positive, Victoria, Australia; 9 GlaxoSmithKline, London, UK; 10 ViiV Healthcare, Research Triangle Park, NC, USA; 11 International Association of Providers of AIDS Care, Denver, CO, USA; 12 Pennine Acute Hospitals NHS Trust, Manchester, UK

3 A steering committee made up of patient organization members and HIV clinicians contributed to the development of the questionnaire and subsequent descriptive analysis. The survey was conducted between November 201 and April 2017 in 9 countries. Individuals were invited to participate via outreach from charities, patient support groups, NGOs, online communities, and social media. All respondents were assessed for eligibility (diagnosed with HIV and aged 18 years) by telephone screening before being sent a URL link to the online questionnaire for self-completion and were compensated according to local guidelines.

4 Content order The slide deck proceeds as follows 1 Experience of living with HIV Perceived health and impact of living with an HIV diagnosis on outlook and aspirations 2 Emotional impact & support Rating of emotional impact and sources of support - at diagnosis versus today 3 Disclosure and stigma Openness with HIV status, extent of disclosure to others & perceived level/type of stigma 4 Relationship and comfort level with HCP Type & frequency of HCP seen, & level of comfort in raising issues of concern 5 Experience with treatment Current ARV treatment, level of satisfaction, dosing, time on ARV, time since & reasons for last switch, side effect impact Appetite for reduction in pill/drug burden Fatigue in daily pill-taking, desire for longer-acting meds and concern over long-term impact of multi-drug regimens GfK April 17, 2017

5 Global scope and sample size n=1085 people living with HIV NORTH AMERICA USA 327 n=437 40% of total sample. Canada 110 EUROPE UK France Germany Italy Spain Austria minute online selfcompletion interviews n=09 5 of total sample Survey methodology A randomly drawn, national sample of people living with HIV in each of NINE countries Each respondent formally validated as having had an HIVpositive diagnosis Following a telephone call with each potential participant to validate and screen for eligibility, the respondent was sent a secure, single-use hyperlink to complete the online selfcompletion questionnaire (average completion time: 35 mins) APAC Australia 39 n=39 of total sample. GfK April 17,

6 Qualitative interviews (90 minutes) were performed Highest Education Level Current with 24 Employment PLHIV (USA, Status UK, Employed Full Time Spain and Austria) to refine the hypothesis A steering committee (patient organization members and HIV clinicians) Post-grad 13% Employed Part Time 11% Self-employed Univ/College Degree 31% Freelance/Contract Work Further contributed Education (Not univ/college to degree) the development 19% of the questionnaire and Voluntary subsequent Work High/Secondary School descriptive analysis 2 Student Less than High/Secondary School 10% Retired WEPED1423 Other/Not Stated The survey was conducted between November Not retired 201 but do and not/cannot April work 2017 in Other/Not Stated 22% 35% 3 Experience communities and of social Living media promotion With (eg, Facebook, HIV: Instagram, Diagnosis Twitter) and Disclosure Findings From Figure 2. Prevalence of Comorbidities All respondents were telephone-screened before being sent a URL link to 1% 5 0% 50% 5 All [ave. 4.0] Under 35 [ave. 2.8] 50+ [ave. 5.4] the online questionnaire for self-completion the and Posi)ve compensated according Perspec)ves All to 50+ Study 40% 35% 30% 9 countries (Table 1) Participants were recruited via charities, patient support groups, NGOs, online No comorbidities 2 45% 2 All Newly diagnosed Diagnosed 10+ All Newly diagnosed Diagnosed 10+ local guidelines years years A Murungi, 1 B Spire, 2 M Muchenje, 3 A Namiba, comorbidities 2 K Parkinson, 5 30% 41% *Stigma S Marcutullio, experienced in M Krehl, 7 last 12 months, % B Allan, 8 stating quite often or very Y Punekar, 1 often. 3+ comorbidities 51% 15% 3% Note: Newly diagnosed = diagnosed in the last 2 years. A de 20% Results Ruiter, 1 S Barthel, 9 J Koteff, 10 B Young, 11 A Ustianowski % ViiV Healthcare, Overall, there Brentford, were 1085 UK; respondents 2 French National to the survey. Institute The for country Medical breakdown Research is (INSERM), Paris, Stigma and France; self-doubt 3 Women s can leave lonely Health and without in Women s a partner. It can Hands be overwhelming Community at times and 10% Health 5% Centre, Toronto, ON, Canada; 4 Salamander Trust, London, UK; 5 Beacon Project, St there Louis, are not MO, a lot of USA; people you Nadir can turn Onlus, to who understand shown in Table 1 Rome, Italy; 7 European AIDS Figure 7. What Can Be Done to Reduce Feelings of Stigmatization? Treatment 0% Group, Germany; 8 Living Positive, Victoria, Australia; 9 GlaxoSmithKline, London, UK; 10 (UK, MSM, 28 yo, diagnosed in 2010) ViiV Healthcare, Research Triangle Park, NC, USA; 11 International Table 1. Association Survey Scope of Providers and Sample of Size AIDS (N=1085) Care, Denver, CO, USA; 12 Pennine Acute Hospitals NHS Trust, Manchester, UK Country n Country n Emotional USA Support at Diagnosis 327 Italy 121 At Canada diagnosis when asked the 110 level of emotional Spain support they received 132 from their main HCP, 8% felt they had been offered some form of emotional UK support/guidance 10 Austria 50 º Differences France between the year (7) and >50 Australia year age groups (0%) were 39 noted (Figure 3) Figure Germany 3. Emotional Support/Guidance 140 Offered by Main HCP ALL Younger (18-34) Older (50+) Gender 3% 21% Other Not offered Info provided only Formal referral Offered/Included Key demographics are highlighted in Figure 1 2 Figure 1. Key Cohort Characteristics and Social Demographics 1 Male Female Transgender 7 1 1% years years 50+ years 2 40% 3 A close friend (45%) Pre-200 was the most common form of Centre support of Town/Small City turned 1 to at diagnosis; HIV Diagnosis however, 49% women were 40% more likely 11% to turn to a close family Outskirts/Suburb of Large City Yes No 15% member (31%) Co-morbidities Comorbidities 1 Demographics and Clinical Characteristics Age Post-grad Univ/College Degree Further Education (Not univ/college degree) High/Secondary School Less than High/Secondary School Other/Not Stated 71% Highest Education Level 13% 19% 2 15% 13% Rural/Countryside 41% 3 8% 30% 71% reported a comorbidity, with mental health related being the most 31% 29% Not retired but do not/cannot work Location/Living Situation Outskirts of Town/Small City Centre of Large City Employed Full Time Employed Part Time Self-employed Freelance/Contract Work Voluntary Work Student Retired Other/Not Stated 13% Current Employment Status 11% 10% 4 5% 2% 2% 1% 3% 2 2 Table 72% 2. Health 5% and Openness Occasionally to Sharing HIV Status: Occasionally Association With 4 48% 4 39% 41% Perceived Level of Stigma* 29% Occasionally All Newly Total Diagnosed Open 10+ All Newly Diagnosed 10+ All Newly Diagnosed 10+ about status Anxiety/Depression comorbidity Mental health self-rating diagnosed years diagnosed years diagnosed years Rated Rated fair/quite Stigma type All Yes Verbal No Yes Institutional No "very/quite good" poor/very poor 3% Physical 9% 10% 5% 9% 8% 11% 13% 5% 9% Verbal 11% 13% 10% 13% 9% 8% 1 Social 19% 19% % 28% Institutional Occasionally Occasionally 12% 11% 20% Self % 22% 1 43% None 28% 1 13% 23% 2 10% I am a nurse and patients Better education with HIV of visit the general the hospital, public and there are always judgments and criticism. Greater Many don't responsibility know much and better about education this disease of the mass and the media current advances. It bothers me as they would judge me and take things out of context Better if they teaching knew in schools I had the disease... (Spain, female heterosexual, 41 yo, diagnosed in 2009) Greater visibility of people who are open about their HIV status New or improved legislation to reduce potential areas of discrimination 30% were generally open to disclosing their status, with differences seen between gender, time since diagnosis and region (Figure ) Greater activity across social media, groups and forums to educate/counter negativity Better training of healthcare professionals Greater activity by HIV patient associations/groups to educate/counter negativity None, I do not see a need 30% % 32% 31% 43% 5% 13% % 35% Acknowledgments: This study was sponsored by ViiV Healthcare and conducted by GfK UK Ltd. The highest reported rates of self stigma were reported in those who were not open about their status; suffered from anxiety/depression or with lower mental health self rating (Table 2) How open about HIV status 40% 42% 3 23% 22% 8% 3% 3% 5% 0% ALL Men Women Newly diagnosed Diagnosed 10+ years North America Europe Australia 21% 3 38% 11% 13% 11% Figure. How You Feel About People Knowing Your HIV Status 1 35% 39% 28% 20% 38% 1 3 Generally open If asked directly Only people very close Table 2. Health and Openness to Sharing HIV Status: Association With Perceived Level of Stigma* Total Open about status Anxiety/Depression comorbidity Mental health self-rating Stigma type All Yes No Yes No None Rated Rated fair/quite "very/quite good" poor/very poor Physical 9% 10% 11%