The Positive Perspectives Survey Report. Views from the partners of people living with HIV

Transcription

1 The Positive Perspectives Survey Report Views from the partners of people living with HIV 1

2 Page Contents Glossary 3 About this report 4 Key insights 5 Expert panel 7 Survey methodology 8 Supporting a partner with HIV 9 A partner s role in treatment 12 What challenges do partners face 15 References 17 About ViiV Healthcare 18 2

3 There are a number of terms or abbreviations and acronyms that may be unfamiliar. They are listed in the table below: Antiretroviral Therapy (ART) Bisexual Comorbidity Heterosexual Homosexual MSM PLHIV QoL Switch WSW Medications used to treat or prevent HIV; can reduce the amount of virus in blood to undetectable levels, preventing HIV-related illness or transmission Sexually attracted to both men and women A condition that exists at the same time as another condition Sexually attracted to people of the opposite sex Sexually attracted to one s own sex Men who have sex with men People living with HIV Quality of life To change from one treatment to another Women who have sex with women Glossary Survey respondent numbers: Throughout this report you will see that alongside every percentage/ statistic from the Positive Perspectives survey, there are two numbers in brackets. This is the actual number of respondents represented by that percentage. For example, if a figure is shown as 61% - which reflects 152 out of the 250 partners - then it would be shown as: 61% (152/250). Please refer to page 8 for the base values of country respondents and demographic breakdowns. 3

4 About this report This report focuses on the results from the Positive Perspectives survey that was created by ViiV Healthcare to understand the emerging needs of PLHIV and their partners. This report covers the partners perspective of: How they support their partner living with HIV The role they play in their partner s treatment The challenges that they face associated with their partner s HIV Insights from the PLHIV aspect of the survey can be found here. All photographs used within this report are of real people living with HIV and their families/significant others and have been fully approved for use. The quotes and insights in this report are the views of people living with HIV and their partners, however they are not attributed to those in the photographs in any way. 4

5 Key insights: support 86% 63% (153/244) have helped their partner with HIV prepare for an appointment with their doctor 1,2 (216/250) stated that they provide emotional support to their partner with HIV 1,2 62% (154/250) would like to be more involved in supporting their partner with their HIV care 1,2 63% (157/250) are heavily involved in the support system for their partner with HIV 1,2 37% (93/250) of participants reported that they lack the information or understanding needed to help their partner with their HIV care 1,2 5

6 Key insights: treatment & challenges 70% (172/244) of participants recognised that their partner experiences side effects due to their HIV medication 1,2 38% 20% (50/250) of partners reported that experiencing stigma is their biggest challenge as a partner of someone living with HIV 2 (92/244) felt that a reduction in the severity/frequency of medication side effects on the body would be best for their partner 1,2 51% (125/244) felt that a reduction in the longerterm impact of HIV medication on the body, would be best for their partner 1,2 59% (102/173) of HIV-negative partners stated that they ve hidden their partner s status for fear of discrimination against themselves 2 6

7 Expert panel The Positive Perspectives survey was conducted by ViiV Healthcare in collaboration with an international, multi-disciplinary expert panel that included: HIV physicians, PLHIV and patient group representatives. The expert panel contributed to the development of the survey themes and quantitative research questions, and participated in the communication of these results. Brent Allan Australia Diego Garcia Morcillo Spain Professor Rob Horne UK Moritz Krehl Germany Simone Marcotullio Italy Marvelous Muchenje Canada Senior Advisor - Australasian Society for HIV Medicine (AUS) & International Council of AIDS Service Organisations (CDN) Member of the European AIDS Treatment Group (EATG), European Community Advisory Board (ECAB) and Chair of the BOD of ADHARA Professor of Behavioural Medicine at the School of Pharmacy, University College London and Founder of Spoonful of Sugar Ltd Member of the European AIDS Treatment Group; and scholar of Konrad-Adenauer-Stiftung HIV/AIDS and Coinfections advocate for national and international communities Community Health Coordinator at Women s Health in Women s Hands Community Health Centre Angelina Namiba UK Kneeshe Parkinson USA Dr Bruno Spire France Dr Andrew Ustianowski UK Dr Benjamin Young USA Local and national strategy and policy adviser to ViiV, community representative; BHIVA Primary Care Working Group; S.A.F.E Kenya, Project Manager, Salamander Trust Patient Navigator/Co Chair Community Advisory Board - St. Louis, MO Senior Scientist at the French National Institute for Medical Research (INSERM) Consultant in Infectious Diseases and Tropical Medicine at the Pennine Acute Hospitals NHS Trust SVP and CMO of the International Association of Providers in AIDS Care (IAPAC) and Editor of AIDSinfonet.org (ViiV HC employee as of June 2018) 7

8 Survey methodology * The Positive Perspectives survey was undertaken in two phases: 1. A preliminary phase of qualitative research was carried out in June/July 2016 with PLHIV and their partners, across four countries, to help understand the key areas of focus An in-depth quantitative survey was carried out in nine countries. 1 The screening process for participants involved completing a pre-questionnaire followed by a telephone interview. Sub-groups included within the survey 2 Female 8% (20) Other 1% (2) % (92) The respondents below are broken down by country and sub-group % (65) (newly diagnosed) 18% (13) Pre % (37) Participants were recruited in multiple ways, including: working with an expert panel (who supported recruitment via their own connections and networks), collaborating with charities, patient support organisations, non-government organisations and HIV online communities and promoting the research via social media 1 : Casual relationship 3% (7) Gender Male 91% (228) Married/ civil partnership 25% (62) HIV-Positive 30% (74) Age % (93) HIV-Negative 69% (173) % (24) Bisexual 4% (10) Year of diagnosis Other 1% (2) Heterosexual 23% (58) Partners were eligible to enter the survey if they were over the age of 18 and had a partner living with HIV. 1 Committed relationship 72% (181) Relationship status Don t know 1% (3) HIV status Homosexual 72% (180) Sexual orientation Country AUS AU CA FR DE IT ES UK US Total Partner *Further information on the methodology of the Positive Perspectives survey is available upon request. 8

9 Chapter 1: Supporting a partner with HIV The majority of partners stated that they felt they offered their HIV-positive partner emotional support 86%, (216/250) 1,2, with 63% (157/250) 1,2 stating that they are heavily involved in their support system. This differed when comparing HIVnegative and HIV-positive partners, with the latter appearing more likely to be heavily involved in their partner s support system 1,2 : 57% VS 77% (99/173) * (57/74) * of HIV-negative of HIV-positive *Three partners did not share their HIV status 9

10 Chapter 1: Supporting a partner with HIV Although 63% (157/250) feel heavily involved in the support system for their partner 1,2, 62% (154/250) would like to be more involved but over a third (93/250) feel as though they lack the information needed to help their partner 1,2. There were a number of other reasons highlighted that partners felt were stopping them from becoming more involved, including 1,2 : 17% (43/250) 17% (42/250) 14% (34/250) Unwilling to ask for fear of making them feel they cannot manage or cope alone Willing to help but unsure how Lack of time What type of support do partners provide? 1,2 86% Provide emotional support 78% Remind them to take their medication 80% (216/250) (200/250) Give them confidence to raise concerns with their main HIV healthcare provider 68% (194/250) (169/250) Help them to decide what they need to discuss with their main HIV doctor 12% (31/250) 12% (29/250) Partner would rather deal with things themselves Partner does not want to be a burden 67% 64% (168/250) (160/250) Remind them about their HIV appointments Help them to organise their HIV medication First of all, it was very important for me to be educated about HIV, the treatment and prognosis for the future to be able to deal with it Male Aged Germany Go with them to routine doctor/nurse appointments related to their partner s HIV and sits in the consultation itself 62% 58% (155/250) (146/250) Go with them to routine doctor/nurse appointments related to their partner s HIV but does not sit in the consultation itself 10

11 Chapter 1: Supporting a partner with HIV The survey findings showed that 61% (152/250) believe that the support available to them as a partner of someone living with HIV is quite or very good 2, whilst 16% (39/250) stated that they are not aware of any support - the experience received was largely dependent on their own HIV status 2. 34% (59/173) of HIV-negative vs 20% (15/74) of HIV-positive participants stated that they did not receive any kind of support or guidance from doctors 1,2 54% (93/173) of HIV-negative vs 26% (19/74) of HIV-positive participants did not receive any kind of support or guidance from HIV community groups or patient associations 1,2 30 % (75/250) of participants say that their partner s doctor considers the support they provide to be important 2. As a consequence, doctors tend to involve them in discussions and support them as a partner 2. I think support from HIV community groups would be the most helpful Male Aged Australia 11

12 Chapter 2: A partner s role in treatment The majority of participants are offering their partner with HIV encouragement and support, with 63% (153/244) assisting with their appointment preparation 1,2.There were a variety of topics that they discussed during their preparation, including: 82 % had raised concerns about side effects their partner is experiencing on medication 1,2 (125/153) 62 % had discussed how their partner can potentially reduce the long-term impact of antiretroviral medications on their body 1,2 (95/153) I would like to be more involved in my partner s treatment and also to receive more education myself Female Aged UK 59 % (90/153) had discussed the possibility of their partner switching to another HIV medication that they have heard about and think might be more suitable 1,2 12

13 Chapter 2: A partner s role in treatment Participants in the survey were asked to rank seven statements about potential improvements to their partner s daily medication. The top three answers were: 38% (92/244) * HIV treatment with less severe/frequent side effects 1,2 34% (82/244) * Ability to take medication less often (but still have the same effect) 1,2 51% (125/244) * their partner taking a HIV treatment that reduces the longer-term impact on their body 1,2 *Of the 250 partners involved in the survey, six reported that their HIV-positive partner was not on treatment 13

14 Chapter 2: A partner s role in treatment Further potential improvements they would like to be made to thier partner s medication include: 20% (48/244) * Ability to take fewer pills (but still have the same effect) 1,2 16% (40/244) * Ability to take a medication that is not in pill form (but still has the same effect) 1,2 18% (43/244) * Ability to take fewer medications (but still have the same effect) 1,2 24% (58/244) * No interaction or effect on other medications 1,2 *Of the 250 partners involved in the survey, six reported that their HIV-positive partner was not on treatment 14

15 Chapter 3: What challenges do partner s face? Similarly to PLHIV, there are still unmet needs amongst partners such as lack of HIV information, thus leading to concern for their partner. Stigma continues to be a challenge, with 70% (174/250) of partners saying that they understand the stigma experienced by their partner 2 - not too far from the 82% (909/1,111) of PLHIV * who say they have experienced a form of HIV-related stigma in the last 12 months 3. However, it can also be seen that partners feel that they experience this stigma themselves. 1 in 5 (50/250) participants reported that experiencing stigma is their biggest challenge as a partner of someone living with HIV % (102/173) of HIV-negative participants say that they ve hidden their partner s status for fear of discrimination against themselves 2. Unfortunately ignorance about an issue creates fear and stigma Female Aged Italy *1,111 PLHIV took part in the Positive Perspectives survey - view their thoughts here 15

16 14 % (34/250) Chapter 3: What challenges do partner s face? With over a third (93/250) feeling that they lack the information required to assist their partner with their HIV 1,2, this is driving worry amongst them, with 31%(78/250) believing that their partner s HIV will decrease their life expectancy 2, despite the fact that advances in treatment demonstrate that PLHIV can live a long and healthy life 4. I support him and make sure he understands he shouldn t feel stigmatised. It is something we face together and it brings us closer every day. Male Aged Spain of participants do not plan too far into the future with their partner living with HIV. 2 16

17 References 1 Garcia Morcillo D, et al. Partners of People Living with HIV (PLHIV): Findings from the Positive Perspectives Survey. Presented at the 22nd International AIDS Conference (AIDS 2018), July 2018, Amsterdam, Netherlands. Abstract number # Positive Perspectives 2017, Data on File 3 Murungi A, et al. Experience of living with HIV: Diagnosis & Disclosure findings from the Positive Perspectives study. Presented at the IAS Conference on HIV Science (IAS 2017), July 2017, Paris, France. Abstract: WEPED Trickey A, et al. Survival of HIV-positive patients starting antiretroviral therapy between 1996 and 2013: a collaborative analysis of cohort studies. Lancet HIV com/journals/lanhiv/article/ PIIS (17) /fulltext?elsca1=tlpr 17

18 About ViiV Healthcare ViiV Healthcare is a global specialist HIV company established in November 2009 by GlaxoSmithKline (LSE: GSK) and Pfizer (NYSE: PFE) dedicated to delivering advances in treatment and care for PLHIV and for people who are at risk of becoming infected with HIV. Shionogi joined in October The company s aim is to take a deeper and broader interest in HIV/AIDS than any company has done before and take a new approach to deliver effective and innovative medicines for HIV treatment and prevention, as well as support communities affected by HIV. For more information on the company, its management, portfolio, pipeline and commitment, please visit About Positive Perspectives survey The Positive Perspectives survey was sponsored by ViiV Healthcare and conducted by GfK UK Limited, an independent market research agency. The survey was conducted in nine countries (Austria, Australia, Canada, France, Germany, Italy, Spain, UK and USA) with a total of 1,111 PLHIV and 250 partners. The recruitment for this survey included working with charities, patient support groups and NGOs, HIV online communities and also promoting the research via social media (Facebook / Instagram / Twitter) in each country. The survey questionnaire was designed by ViiV Healthcare in collaboration with GfK UK Limited and through consultation with an independent Steering Committee of HIV professionals and advocates. The Positive Perspectives survey data are owned by ViiV Healthcare ViiV Healthcare group of companies or its licensor. Hear more about the Positive Perspectives survey on Twitter, LinkedIn and Facebook: Zinc code: VIIV/COM/0006/18 Date of preparation: July