BHIVA Standards of Care for People Living with HIV

Appendices

1. Public Health England. HIV in the United Kingdom. Available at: https://www.gov.uk/government/publications/hiv-in-the-united-kingdom

2. Peters H, Francis K, Sconza R et al. UK mother-to-child transmission rates continue to decline: 2012–2014. Clin Infect Dis 2016; 64:527–528.

3. British HIV Association. Standards of care for people living with HIV 2013. London: BHIVA, 2012. Available at: https://www.bhiva.org/standards-of-care-2013

4. HIV Scotland. National involvement standards (HIV): involving people living with HIV in Scotland. 2017. Available at: https://www.hiv.scot/news/national-involvement-standards-involving-people-living-with-hiv

5. BPS, BHIVA, MedFASH. Standards for psychological support for adults living with HIV. 2011. Available at: https://www.bhiva.org/StandardsForPsychologicalSupport

6. Positively UK. National standards for peer support in HIV. 2017. Available at: http://hivpeersupport.com/

7. UNAIDS. Terminology guidelines. UNAIDS, 2015. Available at: http://www.unaids.org/sites/default/files/media_asset/2015_terminology_guidelines_en.pdf

8. National Institute for Health and Care Excellence. HIV testing: encouraging uptake. Quality standard (QS157). London: NICE, 2017. Available at: https://www.nice.org.uk/guidance/qs157

9. National Institute for Health and Care Excellence. HIV testing: increasing uptake among people who may have undiagnosed HIV. NICE guideline NG60. London: NICE, 2016. Available at: https://www.nice.org.uk/guidance/ng60

10. National Institute for Health and Care Excellence. Behaviour change: individual approaches. Public health guideline [PH49]. London: NICE, 2014. Available at: https://www.nice.org.uk/guidance/ph49

11. British HIV Association. BHIVA guidelines for the routine investigation and monitoring of adult HIV-1-positive individuals. London: BHIVA, 2016. Available at: https://www.bhiva.org/monitoring-guidelines

12. Leber W, McMullen H, Marlin N et al. Promotion of rapid testing for HIV in primary care (RHIVA2): a cluster-randomised controlled trial. Lancet HIV 2015; 2: e317–e318.

13. Baggaley RF, Irvine MA, Leber W et al. Cost-effectiveness of screening for HIV in primary care: a health economics modelling analysis. Lancet HIV 2017; 4(10): e465–e474.

14. HIV in Europe working group. HIV indicator conditions: guidance for implementing HIV testing in adults in health care settings. 2015. Available at: http://hiveurope.eu/Portals/0/Guidance.pdf.pdf

15. National Institute for Health and Care Excellence. Physical health of people in prisons. Quality standard QS156. London: NICE, 2017. Available at: https://www.nice.org.uk/guidance/qs156

16. BHIVA, CHIVA, BASHH. ‘Don’t forget the Children’: guidance for the HIV testing of children with HIV-positive parents. BHIVA/CHIVA/BASHH, 2009. Available at: https://www.bhiva.org/file/FPxfnVqishEbu/DFTC.pdf

17. General Medical Council. Protecting children and young people: the responsibilities of all doctors. 2012. Available at: www.gmc-uk.org/guidance/ethical_guidance/13257.asp

18. UNAIDS. The Prevention Gap Report: Beginning of the end of the AIDS epidemic. UNAIDS Information Production Unit, 2016. Available at: www.unaids.org/sites/default/files/media_asset/2016-prevention-gap-report_en.pdf

19. McCormack S, Dunn DT, Desai M et al. Pre-exposure prophylaxis to prevent the acquisition of HIV-1 infection (PROUD): effectiveness results from the pilot phase of a pragmatic open-label randomised trial. Lancet 2016; 387: 53–60.

20. Molina JM, Capitant C, Spire B et al. On-demand preexposure prophylaxis in men at high risk of HIV-1 infection. N Engl J Med 2015; 373: 2237–2246.

21. Bavinton B, Grinsztejn B, Phanuphak N et al. HIV treatment prevents HIV transmission in male serodiscordant couples in Australia, Thailand and Brazil. IAS Conference on HIV Science (IAS 2017). Paris, France. July 2017. Available at: http://programme.ias2017.org/Abstract/Abstract/5469

22. Rodger AJ, Cambiano V, Brunn T et al. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. JAMA 2016; 316: 1–11.

23. British HIV Association. BHIVA/BASHH guidelines on the use of HIV pre-exposure prophylaxis (PrEP) – Consultation Version. 2017. Available at: https://www.bhiva.org/PrEP-guidelines

24. British HIV Association. BHIVA guidelines for the treatment of HIV-1-positive adults with antiretroviral therapy. London: BHIVA, 2015 (2016 interim update). Available at: https://www.bhiva.org/HIV-1-treatment-guidelines

25. Prevention Access Campaign. Risk of sexual transmission of HIV from a person living with HIV who has an undetectable viral load. Messaging primer and consensus statement. 2018. Available at: https://www.preventionaccess.org/consensus

26. Centers for Disease Control and Prevention. Dear Colleague Letter. September 2017. Available at: https://www.cdc.gov/nchhstp/dear_colleague/2017/dcl-092717-National-Gay-Mens-HIV-AIDS-Awareness-Day.html

27. Moore L, Britten N, Lydahl D et al. Barriers and facilitators to the implementation of person-centred care in different healthcare contexts. Scand J Caring Sci 2016; 31: 662–673.

28. Robinson JH, Callister LC, Berry JA, Dearing KA. Patient-centered care and adherence: definitions and applications to improve outcomes. J Am Acad Nurse Pract 2008; 20: 600–607.

29. World Health Organization. WHO global strategy on people-centred and integrated health services: interim report. 2015. Available at: https://www.who.int/servicedeliverysafety/areas/people-centred-care/global-strategy/en/

30. National Institute for Health Research. Payment for involvement: a guide for making payments to members of the public actively involved in NHS, public health and social care research. 2010. Available at: www.invo.org.uk/wp-content/uploads/2012/11/INVOLVEPayment-Guiderev2012.pdf

31. Justice AC, Chang CH, Rabeneck L, Zackin R. Clinical importance of provider-reported HIV symptoms compared with patient-report. Med Care 2001; 39: 397–408.

32. Lowther K, Selman L, Harding R, Higginson IJ. Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. Int J Nurs Stud 2014; 51: 1171–1189.

33. Harding R, Lampe FC, Norwood S et al. Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect 2010; 86: 520–524.

34. Sherr L, Lampe F, Norwood S et al. Adherence to antiretroviral treatment in patients with HIV in the UK: a study of complexity. AIDS Care 2008; 20: 442–448.

35. Sherr L, Lampe F, Fisher M et al. Suicidal ideation in UK HIV clinic attenders. AIDS 2008; 22:1651–1658.

36. Harding R, Clucas C, Lampe FC et al. What factors are associated with patient self-reported health status among HIV outpatients? A multi-centre UK study of biomedical and psychosocial factors. AIDS Care 2012; 24: 963–971.

37. Sherr L, Lampe F, Norwood S et al. Successive switching of antiretroviral therapy is associated with high psychological and physical burden. Int J STD AIDS 2007; 18: 700–704.

38. Harding R, Molloy T. Positive futures? The impact of HIV infection on achieving health, wealth and future planning. AIDS Care 2008; 20: 565–570.

39. Goffman E. Stigma: Notes on the Management of a Spoiled Identity. New York: Simon & Schuster, 1963.

40. National AIDS Trust. Tackling HIV stigma: what works? London: NAT, 2016. Available at: www.nat.org.uk/publication/tackling-hiv-stigma

41. Frost DM. Social stigma and its consequences for the socially stigmatized. Soc Personal Psychol Compass 2011; 5; 824–839.

42. NAM AIDSMap. What is discrimination? 2015. Available at: www.aidsmap.com/stigma/What-is-discrimination/page/2260812/

43. Mahajan AP, Sayles JN, Patel VA et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 2008; 22(Suppl 2): S67–S79.

44. Positively UK. Improving well-being: the effectiveness of peer support. 2014. Available at: http://positivelyuk.org/wp-content/uploads/2014/01/Evaluation-report-web.pdf

45. Bagnall AM, South J, Hulme C et al. A systematic review of the effectiveness and cost-effectiveness of peer education and peer support in prisons. BMC Public Health 2015; 15: 290.

46. Bateganya M, Amanyeiwe U, Roxo U, Dong M. The impact of support groups for people living with HIV on clinical outcomes: a systematic review of the literature. J Acquir Immune Defic Syndr 2015; 68(Suppl 3): S368–S374.

47. Prestage G, Brown G, Allan B et al. Impact of peer support on behavior change among newly diagnosed Australian gay men. J Acquir Immune Defic Syndr 2016; 72: 565–571.

48. Howarth A, Apea V, Michie S et al. REACH: a mixed-methods study to investigate the measurement, prediction and improvement of retention and engagement in outpatient HIV care. Health Services and Delivery Research 2017; 5.13. Available at: www.ncbi.nlm.nih.gov/books/NBK425236/

49. Baylis A, Buck D, Anderson J et al. The future of HIV services in England. London: King’s Fund, 2017. Available at: www.kingsfund.org.uk/publications/future-hiv-services-england

50. Swendeman D, Ingram BL, Rotheram-Borus MJ. Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS care 2009; 21: 1321–1334.

51. Barlow J, Wright C, Sheasby J et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 2002; 48: 177–187.

52. Kralik D, Koch T, Price K, Howard N. Chronic illness self-management: taking action to create order. J Clin Nurs 2004; 13: 259–267.

53. UNAIDS. Policy brief. The greater involvement of people living with HIV (GIPA). UNAIDS, 2007. Available at: http://data.unaids.org/pub/briefingnote/2007/jc1299_policy_brief_gipa.pdf

54. Equality Act 2010. Available at: www.legislation.gov.uk/ukpga/2010/15/contents

55. Department of Health. Statutory guidance published on joint strategic needs assessments and joint health and wellbeing strategies. 2013. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/277012/Statutory-Guidance-on-Joint-Strategic-Needs-Assessments-and-Joint-Health-and-Wellbeing-Strategies-March-20131.pdf

56. Department of Health. NHS Health & Well-being Improvement Framework. 2011. Available from http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216380/dh_128813.pdf

57. Public Health England. Promoting the health and wellbeing of gay, bisexual and other men who have sex with men: initial findings. London: Public Health England, 2014. Available at: https://www.gov.uk/government/publications/promoting-the-health-and-wellbeing-of-gay-bisexual-and-other-men-who-have-sex-with-men

58. Earnshaw VA, Smith LR, Chaudoir SR et al. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav 2013; 17: 1785–1795.

59. Bing EG, Hays, RD, Jacobson LP et al. Health-related quality of life among people with HIV disease: results from the Multicenter AIDS Cohort Study. Qual Life Res 2000; 9: 55–63.

60. Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med 1996; 334: 835–840.

61. Skills for Care, Skills for Health. Person-centred approaches: empowering people in their lives and communities to enable an upgrade in prevention, wellbeing, health, care and support. 2017. Available at: www.scie.org.uk/prevention/research-practice/getdetailedresultbyid?id=a110f00000NeJXwAAN

62. Burch LS, Smith CJ, Anderson J et al. Socioeconomic status and treatment outcomes for individuals with HIV on antiretroviral treatment in the UK: cross-sectional and longitudinal analyses. Lancet Public Health 2016; 1: e26–e36.

63. Kall M, Nardone A, Delpech V et al. ‘Positive Voices’ a survey of the behaviour, experiences, and healthcare needs of people living with HIV: a pilot study methods and respondent characteristics. Abstract P135. HIV Med 2015; 16 (Suppl 2): 55.

64. Foster C. CHIVA guidance on transition for adolescents living with HIV. CHIVA, 2017. Available at: www.chiva.org.uk/files/2814/8587/2242/CHIVA_Transition_Guidelines2017.pdf

65. Borges AH, Neuhaus J, Babiker AG et al. Immediate antiretroviral therapy reduces risk of infection-related cancer during early HIV infection. Clin Infect Dis 2016; 63: 1668–1676.

66. Drozd DR, Kitahata MM, Althoff KN et al. Increased risk of myocardial infarction in HIV-infected individuals in North America compared with the general population. J Acquir Immune Defic Syndr 2017; 75: 568–576.

67. Malek R, Mitchell H, Furegato M et al. Contribution of transmission in HIV positive men who have sex with men to evolving epidemics of sexually transmitted infections in England: an analysis using multiple data sources, 2009–2013. 2015. Available at: www.eurosurveillance.org/ViewArticle.aspx?ArticleId=21093

68. British HIV Association. BHIVA guidelines on the use of vaccines in HIV-positive adults 2015. London: BHIVA, 2015. Available at: www.bhiva.org/vaccination-guidelines.aspx

69. Nelson M, Dockrell D, Edwards S et al. British HIV Association and British Infection Association guidelines for the treatment of opportunistic infection in HIV-seropositive individuals 2011. HIV Med 2011; 12(Suppl 2): 1–140.

70. Bower M, Palfreeman A, Alfa-Wali M et al. British HIV Association guidelines for HIV-associated malignancies 2014. HIV Med 2014; 15 (Suppl 2): 1–92.

71. Waters L, Lord E, Mackie N et al. BHIVA/BASHH/FSRH guidelines for the sexual & reproductive health of people living with HIV 2017.

72. Stigma Survey UK 2015. HIV in the UK: changes and challenges; actions and answers The people living with HIV stigma survey UK 2015. National findings. Available at: www.stigmaindexuk.org/reports/2016/NationalReport.pdf

73. Molas E, Luque S, Retamero A et al. Frequency and severity of potential drug interactions in a cohort of HIV-infected patients identified through a multidisciplinary team. HIV Clin Trials 2018; 19: 1–7.

74. HIV Pharmacy Association. Available at: www.hivpa.org/

75. Terrence Higgins Trust. Generic HIV therapy. Available at: www.tht.org.uk/myhiv/HIV-and-you/Your-treatment/Generic-HIV-treatment

76. Lampe F, Speakman A, Phillips A et al. Depression and virological status among UK HIV outpatients: a multicentre study. Abstract O4. HIV Med 2012; 13 (Suppl 1): 4.

77. National AIDS Trust. Tackling blood-borne viruses. A framework for prisons in the UK. 2017. Available at: www.hcvaction.org.uk/resource/tackling-blood-borne-viruses-framework-prisons-uk

78. Duerden M, Avery T, Payne R. Polypharmacy and medicines optimisation: making it safe. London: King’s Fund, 2013. Available at: www.kingsfund.org.uk/sites/default/files/field/field_publication_file/polypharmacy-and-medicines-optimisation-kingsfund-nov13.pdf

79. NHS Specialist Pharmacy Service. Polypharmacy, oligopharmacy & deprescribing: resources to support local delivery. 2017. Available at: www.sps.nhs.uk/articles/polypharmacy-oligopharmacy-deprescribing-resources-to-support-local-delivery/

80. National Institute for Health and Care Excellence. Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes. NICE guidance NG5. 2015. Available at: www.nice.org.uk/guidance/ng5

81. National Institute for Health and Care Excellence. Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence. Clinical guidance CG76. 2009. Available at: www.nice.org.uk/guidance/cg76

82. Pozniak AL, Coyne KM, Miller RF et al. British HIV Association guidelines for the treatment of TB/HIV coinfection 2011. HIV Med 2011; 12: 517–524.

83. British HIV Association. BHIVA guidelines for the management of TB/HIV co-infection in adults 2017 (consultation version). Available at: www.bhiva.org/guidelines.aspx

84. British HIV Association. BHIVA guidelines for the management of hepatitis viruses in adults infected with HIV 2013 (updated September 2014). HIV Med 2013; 14(Suppl 4): 1–71.

85. Rasmussen LD, May MT, Kronborg G et al. Time trends for risk of severe age-related diseases in individuals with and without HIV infection in Denmark: a nationwide population-based cohort study. Lancet HIV 2015; 2: e288–e298.

86. Ciesla JA, Roberts JE. Meta-analysis of the relationship between HIV infection and risk for depressive disorders. Am J Psychiatry 2001; 158: 725–730.

87. Gonzalez JS, Batchelder AW, Psaros C et al. Depression and HIV treatment nonadherence. J Acquir Immune Defic Syndr 2011; 58: 181–187.

88. Carrion Martin AI, Kall M, Shahmanesh M et al. Depression-anxiety: the most prevalent co-morbidity among people living with HIV in England and Wales, 2014. Abstract P64. HIV Med 2015; 16 (Suppl 2): 32.

89. Pufall EL, Kall M, Shahmanesh M et al. ‘Chemsex’ and high-risk sexual behaviours in HIV-positive men who have sex with men. Conference on Retroviruses and Opportunistic Infections. Boston, MA, USA. February 2016. Abstract 913.

90. Williams EC, Hahn JA, Saitz R et al. Alcohol use and human immunodeficiency virus (HIV) infection: current knowledge, implications, and future directions. Alcohol Clin Exp Res 2016; 40: 2056–2072.

91. Goodwin N, Sonola L, Thiel V, Kodner DL. Co-ordinated care for people with complex chronic conditions. Key lessons and markers for success. London: The King’s Fund, 2013. Available at: www.kingsfund.org.uk/publications/co-ordinated-care-people-complex-chronic-conditions

92. National Institute for Health and Care Excellence. Multimorbidity: clinical assessment and management. NICE guideline NG56. 2016. Available at: www.nice.org.uk/guidance/ng56

93. McCartney M. Making evidence based medicine work for individual patients, BMJ 2016; 353: i2452.

94. The people living with HIV stigma survey UK. Available at: www.stigmaindexuk.org/research-findings/

95. Li Y, Marshall CM, Rees HC et al. Intimate partner violence and HIV infection among women: A systematic review and meta-analysis. J Int AIDS Soc 2014; 17: 18845.

96. Public Health England. Shooting up: infections among people who inject drugs in the UK. London: PHE, 2017. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/663003/Shooting_Up_2017_report.pdf

97. Scottish Drugs Forum. Available at: www.sdf.org.uk/what-we-do/reducing-harm/infection-outbreak-control/hiv/

98. National AIDS Trust. Still no harm reduction? A critical review of the UK government’s new drugs strategy. NAT, 2017. Available at: www.nat.org.uk/sites/default/files/publications/English Harm Reduction Group Briefing on 2017 Drug Strategy.pdf

99. World Health Organization. Evidence for action on HIV/AIDS and injecting drug use. Policy brief: Antiretroviral therapy and injecting drug users. WHO, 2005. Available at: apps.who.int/iris/bitstream/10665/69130/1/WHO_HIV_2005.06.pdf

100. Heise LL, Raikes A, Watts CH, Zwi AB. Violence against women: a neglected public health issue in less developed countries. Soc Sci Med 1994; 39: 1165–1179.

101. Dhairyawan R, Tariq S, Scourse R, Coyne KM. Intimate partner violence in women living with HIV attending an inner city clinic in the UK: prevalence and associated factors. HIV Med 2013; 14: 303–310.

102. Gielen AC, McDonnell KA, Burke JG, O’Campo P. Women’s lives after an HIV-positive diagnosis: disclosure and violence. Matern Child Health J 2000; 4: 111–120.

103. Sohal H, Eldridge S, Feder G. The sensitivity and specificity of four questions (HARK) to identify intimate partner violence: a diagnostic accuracy study in general practice. BMC Fam Pract 2007; 8: 49.

104. Brown TNT, Herman J. Intimate partner violence and sexual abuse among LGBT people: a review of existing evidence. Los Angeles, CA, USA: Williams Institute, 2015. Available at: https://williamsinstitute.law.ucla.edu/wp-content/uploads/IPV-Sexual-Abuse-Among-LGBT-Nov-2015.pdf

105. Goldberg N, Meyer IH. Sexual orientation disparities in history of intimate partner violence: results from the California Health Interview Survey. J Interpers Violence 2013; 28: 1109–1118.

106. Sullivan AK, Rayment M, Azad Y et al. HIV partner notification for adults: definitions, outcomes and standards. BHIVA/BASHH/SSHA/NAT, 2015. Available at: www.bhiva.org/HIV-partner-notification-for-adults.aspx

107. British HIV Association. BHIVA endorses ‘Undetectable equals Untransmittable’ (U=U) consensus statement. Available at: www.bhiva.org/BHIVA-endorses-U-U-consensus-statement.aspx

108. Kenny J, Williams B, Prime K et al. Pregnancy outcomes in adolescents in the UK and Ireland growing up with HIV. HIV Med 2012; 13: 304–308.

109. World Health Organization. Consolidated guideline on sexual and reproductive health and rights of women living with HIV. WHO, 2017. Available at: www.who.int/reproductivehealth/publications/gender_rights/Ex-Summ-srhr-women-hiv/en/

110. Consultation version of the BHIVA/BASHH/FSRH guidelines for the sexual and reproductive health of people living with HIV 2017. Available at: www.bhiva.org/SRH-guidelines-consultation.aspx

111. British HIV Association. Management of HIV infection in pregnant women 2018 (consultation version). Available at: www.bhiva.org/guidelines.aspx

112. National Institute for Health and Care Excellence. Menopause: diagnosis and management. NICE guideline NG23. Available at: www.nice.org.uk/guidance/ng23

113. Faculty of Sexual and Reproductive Healthcare. FSRH Guideline Executive Summary: Contraception after Pregnancy. FSRH, 2017. Available at: www.fsrh.org/documents/contraception-after-pregnancy-guideline-january-2017/

114. Altice FL, Kamarulzaman A, Soriano VV et al. Treatment of medical, psychiatric, and substance-use comorbidities in people infected with HIV who use drugs. Lancet 2010; 376: 367–387.

115. Bogart LM, Wagner GJ, Galvan FH et al. Perceived discrimination and mental health symptoms among Black men with HIV. Cultur Divers Ethnic Minor Psychol 2011; 17: 295–302.

116. British Psychological Society, British HIV Association, Medical Foundation for AIDS & Sexual Health. Standards for psychological support for adults living with HIV. 2011. Available at: www.bhiva.org/StandardsForPsychologicalSupport.aspx

117. Catalan J, Ridge D, Rosenfeld D. Positive strategies for mental health and well being used by older people living with HIV: a qualitative investigation. 13th AIDS Impact Conference. Cape Town, South Africa, November 2017. Available at: http://www.aidsimpact.com/abstracts/-KmX5e8wo3PshaCQgOLf

118. Dowshen N, Lee S, Franklin J, Castillo M, Barg F. Access to medical and mental health services across the hiv care continuum among young transgender women: a qualitative study. Transgend Health 2017; 2: 81–90.

119. El-Bassel N, Witte SS, Wada T et al. Correlates of partner violence among female street-based sex workers: substance abuse, history of childhood abuse, and HIV risks. AIDS Patient Care STDS 2001; 15: 41–51.

120. Haynes BI, Pitkanen M, Kulasegaram R et al. HIV: ageing, cognition and neuroimaging at 4-year follow-up. HIV Med 2018; epub ahead of print.

121. Heaton RK, Franklin DR, Ellis RJ et al. HIV-associated neurocognitive disorders before and during the era of combination antiretroviral therapy: differences in rates, nature, and predictors. J Neurovirol 2011; 17: 3–16.

122. Henderson C, Thornicroft G. Stigma and discrimination in mental illness: time to Change. Lancet 2009; 373: 1928–1930.

123. People Living with HIV Stigma Index. Give stigma the index finger! Initial findings from The People Living with HIV Stigma Index in the UK. 2009. Available at: www.stigmaindexuk.org/research-findings/

124. Kuyken W, Hayes R, Barrett B et al. Effectiveness and cost-effectiveness of mindfulness-based cognitive therapy compared with maintenance antidepressant treatment in the prevention of depressive relapse or recurrence (PREVENT): a randomised controlled trial. Lancet 2015; 386: 63–73.

125. Lazarus JV, Safreed-Harmon K, Barton SE et al. Beyond viral suppression of HIV: the new quality of life frontier. BMC Med 2016; 14: 94.

126. National AIDS Trust. HIV: public knowledge and attitudes. London: NAT/Ipsos Mori, 2014. Available at: https://www.nat.org.uk/publication/hivpublic-knowledge-and-attitudes-2014

127. National Institute for Health and Care Excellence. Depression in adults: recognition and management. Clinical guideline CG90. 2016. Available at: www.nice.org.uk/guidance/cg90

128. National HIV Nurses Association. A national nurse-led audit of the Standards for Psychological Support for Adults Living with HIV. 2015. Available at: www.nhivna.org/audit-of-HIV-psychological-support

129. Orza L, Bewley S, Logie CH et al. How does living with HIV impact on women’s mental health? Voices from a global survey. J Int AIDS Soc 2015; 18(Suppl 5): 20289.

130. Roth A, Fonagy P. What works for whom? A Critical Review of Psychotherapy Research. New York: Guilford Publications, 2005.

131. Springer SA, Spaulding AC, Meyer JP, Altice FL. Public health implications for adequate transitional care for HIV-infected prisoners: five essential components. Clin Infect Dis 2011; 53: 469–479.

132. Su T, Schouten J, Geurtsen GJ et al. Multivariate normative comparison, a novel method for more reliably detecting cognitive impairment in HIV infection. AIDS 2015; 29: 547–557.

133. UNAIDS. The Gap Report: People with disabilities. UNAIDS, 2014. Available at: www.unaids.org/sites/default/files/media_asset/11_Peoplewithdisabilities.pdf

134. Watson R, Stimpson A, Hostick T. Prison health care: a review of the literature. Int J Nurs Stud 2004; 41: 119–128.

135. Webb L, Perry-Parrish C, Ellen J, Sibinga E. Mindfulness instruction for HIV-infected youth: a randomized controlled trial. AIDS Care 2017; 25:1–8.

136. Blum RW, Garell D, Hodgman CH et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14: 570–576.

137. You’re welcome pilot 2017. Refreshed standards for piloting. Available at: www.youngpeopleshealth.org.uk/yourewelcome/wp-content/uploads/2017/02/YoureWelcome_RefreshedsStandards.pdf

138. Children’s HIV Association. Standards of care for infants, children, and young people with HIV (including infants born to mothers with HIV). CHIVA, 2017. Available at: https://www.chiva.org.uk/files/5215/3987/5455/CHIVA_STANDARDS_2017.pdf

139. HYPNET/CHIVA/BASHH/BHIVA. Guidance on the management of sexual and reproductive health for adolescents living with HIV 2011. Available at: https://www.bhiva.org/file/DJupUzmhqWwIl/AdolescentSexHealthGuidance.pdf

140. Ely A. Guidance for young people on managing taking HIV medicine. CHIVA, 2015. Available at: www.chiva.org.uk/files/7214/5207/8528/Guidance_for_Young_People_on_Managing_Taking_Medication.pdf

141. Spotting the signs: a national proforma to identify child sexual exploitation in sexual health services. London: BASHH/Brook, 2014. Available at: www.bashh.org/documents/Spotting-the-signs-A national proforma Apr2014.pdf

142. Hudson A, Mbewe R, Delpech V. UK Stigma Index Survey. 2015. Available at: https://www.bhiva.org/file/BQYUtwEleOfJi/ValerieDelpech-AlastairHudson-RebeccaMbew.pdf

143. Terrence Higgins Trust. Your rights. Available at: https://www.tht.org.uk/hiv-and-sexual-health/living-well-hiv/your-rights

144. National AIDS Trust. Why we need HIV support services: a review of the evidence. NAT, 2017. Available at: www.nat.org.uk/publication/why-we-need-hiv-support-services-review-evidence

145. Croxford S, Kitching A, Desai S et al. Mortality and causes of death in people diagnosed with HIV in the era of highly active antiretroviral therapy compared with the general population: an analysis of a national observational cohort. Lancet Public Health 2017; 2: e35–e46.

146. Cingolani A, Cozzi Lepri A, Teofili L et al. Survival and predictors of death in people with HIV-associated lymphoma compared to those with a diagnosis of lymphoma in general population. PLoS One 2017; 12: e0186549.

147. Smith CJ, Ryom L, Weber R et al. Trends in underlying causes of death in people with HIV from 1999 to 2011 (D:A:D): a multicohort collaboration. Lancet 2014; 384: 241–248.

148. Jeon C, Lau C, Kendall CE et al. Mortality and health service use following acute myocardial infarction among persons with HIV: a population-based study. AIDS Res Hum Retroviruses 2017; 33: 1214–1219.

149. Harding R. Palliative care: an essential component of the HIV care continuum. Lancet HIV 2018.

150. World Health Organization. WHO definition of palliative care. 2013. Available at: www.who.int/cancer/palliative/definition/en/

151. Harding R, Higginson IJ. PRISMA: a pan-European co-ordinating action to advance the science in end-of-life cancer care. Eur J Cancer 2010; 46: 1493–1501.

152. Temel JS, Greer JA, Muzikansky A et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363: 733–742.

153. Zimmermann C, Swami N, Krzyzanowska M et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014; 383: 1721–1730.

154. Higginson IJ, Bausewein C, Reilly CC et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014; 2: 979–987.

155. Temel JS, Greer JA, El-Jawahri A et al. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol 2017; 35: 834–841.

156. Gwyther L, Brennan F, Harding R. Advancing palliative care as a human right. J Pain Symptom Manage 2009; 38: 767–774.

157. Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis 2012; 12: 571–575.

158. Higginson IJ, Gomes B, Calanzani N et al. Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries. Palliat Med 2014; 28: 101–110.

159. Harding R, Simms V, Calanzani N et al. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013; 22: 2298–2305.

160. Gomes B, Higginson IJ, Calanzani N et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol 2012; 23: 2006–2015

161. Harding R, Marchetti S, Onwuteaka-Philipsen BD et al. Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data. BMC Infect Dis 2017; 18: 55.

162. Harding R, Easterbrook P, Higginson IJ et al. Access and equity in HIV/AIDS palliative care: A review of the evidence and responses. Palliat Med 2005; 19: 251–258.

163. Bristowe K, Hodson M, Wee B et al. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med 2018; 32: 23–35.

164. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med 2012; 15: 602–611.

165. Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature. Palliat Med 2016; 30: 730–744.

166. Evans N, Menaca A, Koffman J et al. Cultural competence in end-of-life care: terms, definitions, and conceptual models from the British literature. J Palliat Med 2012; 15: 812–820.

167. Evans N, Menaca A, Andrew EV et al. Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom. J Pain Symptom Manage 2012; 43: 261–286.

168. Koffman J, Morgan M, Edmonds P et al. Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer. Palliat Med 2008; 22: 350–359.

169. Gysels M, Higginson IJ. Improving Supportive and Palliative Care for Adults with Cancer: Research Evidence. London: National Institute for Clinical Excellence, 2004.

170. Eagar K, Watters P, Currow DC et al. The Australian Palliative Care Outcomes Collaboration (PCOC): measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev 2010; 34: 186–192.

171. Sharp L. The people living with HIV stigma index qualitative data: findings of the qualitative work undertaken to complement the people living with HIV stigma index. 2010. Available at: http://www.stigmaindexuk.org/reports/final_qualitative_report_nov_2010.pdf

172. National HIV Nurses Association. National HIV Nursing Competencies. 2013. Available at: https://www.nhivna.org/competencies

173. National HIV Nurses Association. Advanced nursing practice in HIV care: guidelines for nurses, doctors, service providers and commissioners. 2016. Available at: https://www.nhivna.org/AdvancedPractice

174. Royal Pharmaceutical Society. A competency framework for all prescribers. 2016. Available at: www.rpharms.com/resources/frameworks/prescribers-competency-framework

175. Dietitians in HIV/AIDS. DHIVA competency framework: for dietitians working with patients living with HIV. DHIVA, 2014. Available at: dhiva.org.uk/wp-content/uploads/2013/01/DHIVA_Competencies_Jan_14.pdf

176. Public Health England. Making it work. A guide to whole system commissioning for sexual health, reproductive health and HIV. PHE, 2014. Available at: www.gov.uk/government/publications/commissioning-sexual-health-reproductive-health-and-hiv-services

177. 2013/14 Standard contract for specialist Human Immunodeficiency Virus Services. www.england.nhs.uk/wp-content/uploads/2013/06/b06-spec-hiv-serv.pdf

178. National Quality Board. National guidance learning from deaths. 2017. Available at: www.england.nhs.uk/wp-content/uploads/2017/03/nqb-national-guidance-learning-from-deaths.pdf

179. NHS National Institute for Health Research. Improving the health and wealth of the nation through research. 2012. Available at: www.nihr.ac.uk/Pages/default.aspx

180. Public Health England. HIV surveillance systems. PHE, 2008. Available at: www.gov.uk/guidance/hiv-surveillance-systems

181. NHS Digital. Standards and Collections. Available at: content.digital.nhs.uk/isce/publication/standards

182. General Medical Council. Confidentiality: good practice in handling patient information. GMC, 2017. Available at: www.gmc-uk.org/guidance/ethical_guidance/confidentiality.asp

183. Department of Health and Social Care. Confidentiality: NHS Code of Practice. 2003. Available at: www.gov.uk/government/publications/confidentiality-nhs-code-of-practice

184. Health and Social Care Information Centre. A guide to confidentiality in health and social care. Treating confidential information with respect. HSCIC, 2013. Available at: http://content.digital.nhs.uk/media/12822/Guide-to-confidentiality-in-health-and-social-care/pdf/HSCIC-guide-to-confidentiality.pdf

185. National AIDS Trust. HIV patient information and NHS confidentiality in England. NAT, 2014. Available at: https://www.bhiva.org/file/BwCYqPxzGmIat/Jan-2014-HIV-Patient-Confidentiality-NHS.pdf

186. National AIDS Trust. Confidentiality and disclosure. NAT. Available at: www.nat.org.uk/sites/default/files/publications/Jan-2014-HIV-Patient-Confidentiality-NHS.pdf

187. HIV Scotland/National AIDS Trust. Your choice: a guide to confidentiality and HIV in Scotland. 2016. Available at: https://www.hiv.scot/news/your-choice-a-guide-to-confidentiality-and-hiv

1b. Prevention

Prevention Access Campaign’s Consensus Statement

The following statement has been endorsed by over 600 organizations from 75 countries:

NOTE: An undetectable HIV viral load only prevents HIV transmission to sexual partners. Condoms also help prevent HIV transmission as well as other STIs and pregnancy. The choice of HIV prevention method may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners or in a non-monogamous relationship, they might consider using condoms to prevent other STIs.

NEGLIGIBLE = so small or unimportant as to be not worth considering; insignificant.

Since the statement was first issued in July 2016, a further Editor’s note was published in January 2018:

The term ‘negligible’ is not effective in public health messaging to describe the risk of HIV sexual transmission when a person with HIV has an undetectable viral load and is taking ART as prescribed. ‘Negligible’ is often misconstrued as still a risk to take into consideration in sexual and reproductive health decisions. Please see the messaging guide with examples of the words used in public health messaging to convey the risk including ‘effectively no risk’, ‘cannot transmit’ and ‘do not transmit.’ It is imperative that language instills confidence rather promote unnecessary fear about sexual transmission when a person with HIV has an undetectable viral load and is taking ART as prescribed.

The Consensus Statement along with a messaging primer can be found in full at: www.preventionaccess.org/consensus.

7a. Young adults and adolescents living with HIV

Further National Transitional Care Guidance

National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services. NICE guidelines (NG43). 2016. Available at: www.nice.org.uk/guidance/ng43

Royal College of Paediatrics and Child Health. The Intercollegiate Working Party on Adolescent Health. Bridging the gaps: health care for adolescents. 2003. Available at: www.rcpch.ac.uk/publications

You’re Welcome quality criteria: Making health services young people friendly. 2007. www.dh.gov.uk

CHIVA guidance on transition for adolescents living with HIV. Available at: www.chiva.org.uk/files/2814/8587/2242/CHIVA_Transition_Guidelines2017.pdf

7d. Palliative care

Watson M, Armstrong P, Back I et al. Palliative Adult Network Guidelines. 4th edn. 2016.

Clinical Guide on Supportive and Palliative Care for People with HIV/AIDS. 2003. Available at: https://www.thebodypro.com/article/clinical-guide-supportive-palliative-care-hiv-aids-1

Palliative care Outcome Scale. Available at: www.pos-pal.org

Priorities for care part of new approach to care for dying people. 2014. Available at: www.cqc.org.uk/news/stories/priorities-care-part-new-approach-care-dying-people

End of life care strategy: promoting high quality care for adults at the end of their life. 2008 www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

Ambitions for palliative and end of life care: route to success. Available at: endoflifecareambitions.org.uk/route-to-success/

ACCESSCare (UK recommendations for palliative and end-of-life care for LGBT people). Available at: www.kcl.ac.uk/nursing/departments/cicelysaunders/research/living/access/index.aspx

The Mental Capacity Act 2005. Available at: www.nhs.uk/conditions/social-care-and-support/mental-capacity/

Adherence: Adherence to medicines is defined as the extent to which the patient’s action matches the agreed recommendations. Non-adherence may limit the benefits of medicines, resulting in lack of improvement, or deterioration, in health and the emergence of drug resistant strains of HIV.

Adherence support: Mechanisms and interventions that help patients match the agreed recommendations, allowing them to take the correct dose of the correct drug at the correct time.

AIDS (acquired Immunodeficiency syndrome): AIDS is a clinical syndrome, characterised by an increased susceptibility to a number of infectious and malignant conditions, which is the result of damage to the immune system caused by HIV.

Antiretroviral therapy (ART, ARVs): Drugs, usually taken in combination with one another, that suppress the activity of HIV by inhibiting viral replication.

BASHH: British Association for Sexual Health and HIV (www.bashh.org).

BHIVA: British HIV Association (www.bhiva.org).

CD4 cells: The class of white blood cells known as CD4 T-helper lymphocytes, which are the target cells for HIV and subsequent damage.

CD4 count: The number of CD4 T-helper lymphocytes in the blood. Someone without HIV normally has a count between 500 and 1200 cells/mm³.

Chemsex: Sex between men under the influence of drugs (typically methamphetamine, mephedrone, GHB/GBL) taken immediately before and/or during a sex session to sustain, enhance, disinhibit or facilitate the experience and performance.

CHI: Community Hospital Index number (Scotland)

CHIVA: Children’s HIV Association (www.chiva.org.uk)

Clinical indicator condition: A specific clinical condition which is associated with HIV and in which HIV therefore enters the differential diagnosis.

Commissioning: The process of planning, agreeing and monitoring services.

Continuing Professional Development (CPD): An ongoing commitment to learning in various forms, which maintains knowledge and skills, and which enhances professional standards of work. This is an obligatory component of most professions.

CQUIN: Commissioning for quality and innovation national goals.

CSE: Child sexual exploitation

Designated: A specified place or person that is identified for a certain purpose or responsibility.

DoH: Department of Health.

DHIVA: Dietitians working in HIV/AIDS.

Drug interaction (drug–drug interaction or DDI): A situation in which a substance (often another drug) affects the activity of a drug, i.e. the effects of the drug may be increased or decreased, or a new effect may occur that neither agent produces when taken on its own.

Drug resistance: The ability of HIV to overcome the drugs used in its treatment. Other terms include class resistance and multi-drug resistance. Class resistance refers to a strain of HIV that shows evidence of resistance to one class of drug (e.g. NRTIs, NNRTIs or PIs). Multi-drug resistance usually implies resistance to multiple classes of drugs.

FRSH: Faculty of Sexual and Reproductive Healthcare (www.fsrh.org).

GMC: General Medical Council (www.gmc-uk.org).

GU or GUM: Genitourinary medicine. Medical specialty relating to the diagnosis and management of sexually transmitted infections (including HIV) and other genital conditions in men and women.

HCPC: Health and Care Professions Council (www.hcpc-uk.co.uk).

HDU: High-dependency unit.

HPS: Health Protection Scotland (www.hps.scot.nhs.uk).

HIV: Human immunodeficiency virus.

HIV resistance assay: An assay to identify the presence of changes within the genetic make-up of HIV which will lead to drug resistance. It is useful in deciding which HIV drugs to use to treat HIV in an individual patient.

HLA-B*5701: HLA-B*5701 is one of a family of human genes, the human leukocyte antigen (HLA) complex. This particular HLA type is associated with allergic reactions to the drug abacavir.

ID (infectious diseases): The branch of medicine that specialises in the diagnosis and management of infectious diseases.

Immunosuppression: A reduction in the activity or the effectiveness of the immune system, leaving the individual more susceptible to a range of infections.

IPV: Intimate partner violence.

ITU: Intensive therapy unit.

‘Late’ and ‘very late’ HIV diagnosis: A CD4 cell count below 350 cells/mm³ at time of diagnosis of HIV. Very late diagnosis is either clinical presentation of AIDS at time of HIV diagnosis or a CD4 cell count less than 200 cells/mm³.

LGV: Lymphogranuloma venereum: a sexually transmitted infection caused by the invasive serovars L1, L2, L2a or L3 of Chlamydia trachomatis.

Morbidity and comorbidity: The state of being unhealthy and/or having a particular disease. Comorbidity refers to the presence of all the diseases and health problems that may exist in an individual patient, in addition to HIV.

MDT/multidisciplinary team: The term ‘multidisciplinary team’ used in this document refers to a group consisting of representatives from several different professional backgrounds and areas of expertise.

MSM: Men who have sex with other men. Refers to any man who has sex with another man, whether he identifies himself as gay, bisexual or heterosexual.

Network: A collaboration between service providers to ensure that people living with HIV have equity of access to appropriate care. The network will vary depending on prevalence, cost and complexity of condition. It may involve two local services working together and be based regionally or nationally. The collaboration may involve multiple specialties working together as part of an MDT.

NHIVNA: National HIV Nurses Association (www.nhivna.org)

NIHR: National Institute for Health Research. An organisation whose aim is improving the health and wealth of the nation through research (www.nihr.ac.uk).

NSF: National Service Framework.

NSHPC: National Study of HIV in Pregnancy and Childhood. This is a confidential national (UK and Ireland) reporting scheme for pregnancies in women who are HIV positive, babies born to women who are HIV positive and other children with HIV (www.ucl.ac.uk/nshpc).

Onward transmission: When a virus/infection is passed on from one individual to another.

Opportunistic infection: An infection that will usually only occur in a person who has a compromised immune system. Their occurrence in the context of HIV infection usually indicates that the person needs to start ART. Many are AIDS-defining.

p24 antigen: This is a component of the HIV virus that is one of the earliest markers of HIV. Testing for p24 antigen is used to detect primary HIV infection.

Post-exposure prophylaxis (PEP): Immediate HIV therapy (started within 72 hours of exposure), usually given for 4 weeks, following a high-risk HIV exposure. The aim is to reduce the risk of acquiring HIV.

PHE: Public Health England (www.gov.uk/government/organisations/public-health-england)

PN: Partner notification. This is a process whereby the sexual partners of people with a diagnosis of an STI are informed of their exposure to the infection.

Pre-exposure prophylaxis (PrEP): Anti-HIV medication taken by people who are HIV negative to lower their risk of acquiring HIV. It usually involves taking drugs on a daily basis.

Prophylaxis: Treatment that is given to prevent the occurrence of an infection.

QIPP: NHS Quality, Innovation, Productivity and Prevention.

RHIVA: Rehabilitation in HIV Association (www.bhiva.org/RHIVA.aspx).

Stepped-care model: A model with four essential levels of psychological support provision for people living with HIV, based on levels of need.

STI: Sexually transmitted infection.

Treatment as prevention (TasP): An HIV prevention intervention where treating an HIV-positive person with antiretroviral medication is used to reduce the risk of transmission of the virus to a negative partner.

Tertiary care: Specialised consultative care, usually on referral from primary or secondary medical care personnel, by specialists working in a centre that has personnel and facilities for special investigation and treatment.

Transition: The purposeful, planned movement of adolescents and young adults with chronic physical and mental conditions from child-centred to adult-oriented health care systems.

TB: Tuberculosis. An infection due to Mycobacterium tuberculosis that is associated with HIV.

Tropism: HIV tropism refers to the cell type that the human immunodeficiency virus (HIV) infects and in which it replicates.

UNAIDS: The Joint United Nations Programme on HIV/AIDS (www.unaids.org).

Viral load: The quantity and activity of HIV in an individual’s blood, usually measured by a test that determines the number of copies/mL.

Viral rebound: Confirmed measurable HIV viral load, usually of more than 200 copies/mL, after previously reaching viral suppression on therapy.

Vertical transmission: Also known as ‘mother-to-child’ transmission. The transmission of an infection or other disease from a woman to her child. ‘Vertical transmission’ is a more inclusive term, and acknowledges the role of the father/male sexual partner.

Virtual clinic: Provision of expert advice by a multidisciplinary panel of experts from a specialist treatment centre on the therapeutic treatment options for a patient managed by a clinician located at the same or a different treatment centre via on-line and other ICT-based remote management systems.

A Steering Group was convened by BHIVA to include representation from organisations involved in the provision and commissioning of care for people living with HIV together with people living with HIV. Three work streams have led to the development of these Standards:

Reviewing and updating the content and structure of the 2013 Standards of Care. Input was solicited from the attendees at the BHIVA national conference in April 2017. BHIVA members and UK-CAB were contacted to request input and feedback.
Drafting the rationale, quality statements and appropriate outcome measures for each standard. Writing Groups (led by a nationally recognised expert in the topic area, nominated by the chairs of the Steering Group) were tasked with drafting the appropriate content for each standard.
Consulting widely across all relevant stakeholders for feedback and comments on the standards. Two national stakeholder meetings were held to review the new content and structure and further input was sought at the BHIVA national conference in November 2017. The BHIVA Audit and Standards Subcommittee participated in the design of the auditable outcome measures. A web consultation process was undertaken in January and February 2018, and the Standards were further amended in the light of feedback received.

According to the National Involvement Standards (2017), people living with HIV should have meaningful involvement in developing services, policies and decisions affecting them. To ensure the voices and opinions of people living with HIV were heard and acted upon during the development of these Standards, people living with HIV were involved throughout the process. People living with HIV attended and contributed to the stakeholder meetings and to the Steering Group. In addition, every Writing Group included at least one person living with HIV. By working together in this way, everyone involved was able to contribute to developing more effective and impactful services.

Contributors

Members of the Standards Steering Group, Writing Groups and Writing Leads

Allan Anderson	Positively UK
Jane Anderson	Homerton University Hospital
Brian Angus	Oxford University Hospitals
Christina Antoniadi	St Mary’s Hospital
Vanessa Apea	Royal London Hospital
David Asboe	Chelsea and Westminster Hospital
Sara Ayres	Imperial College Healthcare NHS Trust
Yusef Azad	National AIDS Trust
Angela Bailey	St Mary’s Hospital
Ravneet Batra	NHS Lothian
Gill Bell	Sheffield Teaching Hospitals NHS Foundation Trust
Garry Brough	UK-CAB
Jane Bruton	Imperial College London
Naomi Bulteel	NHS Lothian
Sharon Byrne	HIVPA
David Cameron	Waverley Care
Muge Cevik	NHS Lothian
Sum Yee Chan	Ashford and St Peter’s Hospitals/CNWL
Kathleen Charters	Sahir House
Duncan Churchill	Royal Sussex County Hospital
Paul Clift	King’s College Hospital/UK-CAB
Dan Clutterbuck	NHS Lothian
Simon Collins	HIV i-Base
Sarah Cox	Chelsea and Westminster NHS Foundation Trust/Royal Trinity Hospice
Ben Cromarty	North Yorkshire AIDS Action/UK-CAB
Michelle Croston	North Manchester General Hospital
Hilary Curtis	BHIVA
Will Dalgleish	Lothian HIV Patient Forum
Valerie Delpech	Public Health England
Richard Desmond	UK-CAB
Shema Doshi	King’s College Hospital
Bob Downes	Royal Liverpool and Broadgreen Hospitals
Simon Edwards	CNWL/University College London Hospitals
Morgan Evans	NHS Lothian
John Evans-Jones	Countess of Chester Hospital, Chester
Sophie Forsyth	Great Western Hospital
Caroline Foster	Imperial College Healthcare NHS Trust
Andrew Freedman	University Hospital of Wales
Jeffrey Grierson	Anglia Ruskin University
Elizabeth Hamlyn	King’s College Hospital
Richard Harding	King’s College London
Lucy Hedley	HIVPA/Mortimer Market Centre/University College London Hospitals
Alastair Hudson	FPA/The People Living with HIV Stigma Index UK
Robert James	UK-CAB
Aicha Kallo	UK-CAB
Damian Kelly	UK-CAB
David King	Positively UK
Ming Lee	Guy’s and St Thomas’ NHS Foundation Trust
Emily Lord	Oxford University Hospitals
Richard Ma	The Village Practice, London
Emily Mabonga	Lewisham and Greenwich NHS Trust
Nicky Mackie	Imperial College Healthcare NHS Trust
Alexander Margetts	Chelsea and Westminster NHS Foundation Trust/BPS
Rebecca Mbewe	UK-CAB
Esther McDonnell	Chelsea and Westminster NHS Foundation Trust/RHIVA
Becky Metcalfe	NHS Greater Glasgow and Clyde
Aoife Molloy	The Health Foundation
Angelina Namiba	UK-CAB/Salamander Trust
Kennedy Nkhoma	King’s College London
Achyuta Nori	Guy’s and St Thomas’ NHS Foundation Trust
Nneka Nwokolo	Chelsea and Westminster Hospital
Chloe Orkin	Barts Health NHS Trust
Adrian Palfreeman	King’s College Hospital
Linda Panton	NHS Lothian
Breda Patterson	Chelsea and Westminster NHS Foundation Trust
Matt Phillips	Cumbria Partnership NHS Foundation Trust
Frank Post	King’s College Hospital
Simon Rackstraw	Royal London Hospital
Mel Rattue	UK-CAB/Positively Mindful CIC
Iain Reeves	Homerton University Hospital
Karen Rogstad	Sheffield Teaching Hospitals NHS Foundation Trust
Sarah Rutter	North Manchester General Hospital
Caroline Sabin	University College London
Liat Sarner	Barts Health NHS Trust
Sophie Strachan	Sophia Forum
Shema Tariq	University College London
Chris Taylor	King’s College Hospital
Melinda Tenant-Flowers	King’s College Hospital – Retired
Adele Torkington	HIVPA/North Manchester General Hospital
Roy Trevelion	HIV i-Base
Laura Waters	Mortimer Market Centre
Shaun Watson	Chelsea and Westminster Hospital/NHIVNA
Alan Winston	Imperial College London

London Stakeholder Meeting

Monday 6th November 2017, University College London

Attendance list

Allan Anderson	Positively UK
Yusef Azad	National AIDS Trust
Tristan Barber	BASHH
Garry Brough	UK-CAB
Fiona Burns	Co-chair
Sharon Byrne	HIVPA
Carlos Corredor	NAZ
Alastair Duncan	DHIVA
Jose Figueroa	Public Health England/NHS England (London Region)
Antonio Giacalone	Positive East
Jeffrey Grierson	Anglia Ruskin University
Jason Hale	UK-CAB
Rebecca Hall	Mawbey Group Practice
Lucy Hedley	HIVPA/Mortimer Market Centre/University College London Hospitals
Simon Horvat-Marcovic	UK-CAB
Alison Howarth	Coordinator
Alison Jenkin	St George’s Hospital
Jo Josh	UK-CAB
Bernard Kelly	St George’s Hospital
Christabel Kunda	NAZ
Chon Lam	St George’s Hospital
Emily Mabonga	Lewisham and Greenwich NHS Trust
James Miller	Living Well CIC
Jayran Mistry	Blackfriars Medical Practice
Maureen Ndawana	African Health Policy Network
Kennedy Nkhoma	King’s College London
Achyuta Nori	Guy’s and St Thomas’ NHS Foundation Trust
Christian Pankhurst	RHIVA/Guy’s and St Thomas’ NHS Foundation Trust
Mel Rattue	UK-CAB/Positively Mindful CIC
Iain Reeves	Homerton University Hospital
George Rodgers	H.A.D Support UK
Sophie Strachan	Sophia Forum
Ann Sullivan	Co-chair
Jaime Sylla	Positive East
Chris Taylor	King’s College Hospital
Roy Trevelion	HIV i-Base
Ian Williams	CNWL/HIV CRG

Manchester Stakeholder Meeting

Tuesday 7th November 2017, Friends’ Meeting House, Manchester

Attendance list

Alec Bonington	Pennine Acute Hospitals NHS Trust
David Chadwick	Co-chair
Kathleen Charters	Sahir House
Ben Cromarty	North Yorkshire AIDS Action/UK-CAB
Steven Duffy	HIV Scotland (patient rep)
Kathryn Gallon	North Yorkshire AIDS Action
Ellen Hill	Yorkshire MESMAC
Robert Houlgate	BHA Leeds Skyline
Alison Howarth	Coordinator
Kaveh Manavi	University Hospitals Birmingham NHS Foundation Trust
Sheila Morris	Co-chair
Adela Mugabo	George House Trust
Elizabeth Okecha	BASHH
Liz Porter	Terrence Higgins Trust
Sarah Schoeman	Leeds Teaching Hospitals NHS Trust
Alex Sparrowhawk	Terrence Higgins Trust
Adele Torkington	HIVPA/North Manchester General Hospital

Community group involvement

In Standards Steering Group and Writing Groups

HIV i-Base

National AIDS Trust

North Yorkshire AIDS Action

Positively Mindful CIC

Positively UK

Sahir House

Salamander Trust

Sophia Forum

The People Living with HIV Stigma Index UK

UK-CAB

Waverly Care

London Stakeholder Meeting

African Health Policy Network

H.A.D Support UK

HIV i-Base

Living Well CIC

National AIDS Trust

NAZ

Positive East

Positively UK

Sophia Forum

UK-CAB

Positively Mindful CIC

Manchester Stakeholder Meeting

BHA Leeds Skyline

George House Trust

UK-CAB

North Yorkshire AIDS Action

Sahir House

Terrence Higgins Trust

Yorkshire MESMAC

Responses to online public consultation

African Health Policy Network

Catholics for AIDS Prevention and Support

H.A.D Support UK

Leicestershire AIDS Support Services (LASS)

LGBT Foundation

National AIDS Trust

Positive Catholics

Positive East

Salamander Trust

Scottish Drugs Forum

Sophia Forum

Terrence Higgins Trust

UK-CAB

The NHS Outcomes Framework is a set of indicators developed by the Department of Health to monitor the health outcomes of adults and children in England. The framework provides an overview of how the NHS is performing. The indicators relevant to HIV care are listed below, with the corresponding link to the BHIVA Standard(s).

Domain 1: Preventing people from dying prematurely – overarching indicators

1a Potential years of life lost from causes considered amenable to healthcare – link to 1a, 1b, 3, 4 and 7d

Domain 2: Enhancing quality of life for people with long-term conditions

2 Health-related quality of life for people with long-term conditions

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition – link to 2b and 2c

Reducing time spent in hospital by people with long-term conditions

2.3 i Unplanned hospitalisation for chronic ambulatory care sensitive conditions – link to 3b and 4a

Enhancing quality of life for carers

2.4 Health-related quality of life for carers (ASCOF 1D) – link to 2c and 4c

Enhancing quality of life for people with mental illness

2.5 i Employment of people with mental illness (ASCOF 1F and PHOF 1.8)

Enhancing quality of life for people with dementia – link to 6

Improving quality of life for people with multiple long-term conditions – link to 4b

2.7 Health-related quality of life for people with three or more long-term conditions (ASCOF 1A)

Domain 3: Helping people to recover from episodes of ill health or following injury

3.1 Total health gain as assessed by patients for elective procedures

ii Psychological therapies – link to 5a

Domain 4: Ensuring that people have a positive experience of care

4b Patient experience of hospital care – link to 3b and 4a

4c Friends and family test – link to 4a

Improving women and their families’ experience of maternity services

4.5 Women’s experience of maternity services – link to 5b

Improving experience of healthcare for people with mental illness

4.7 Patient experience of community mental health services – link to 6

Domain 5: Treating and caring for people in a safe environment and protecting them from avoidable harm

5a Deaths attributable to problems in healthcare – link to 1a and 7d

5b Severe harm attributable to problems in healthcare – link to 1a, 2b, 2c, 3a, 7c and 7d

Note: PHOF – Public Health Outcome Framework; ASCOF - Adult Social Care Outcome Framework

Anxiety screen – GAD-2

Over past 2 weeks, how often have you been bothered by:

Feeling nervous, anxious, or on edge

Not being able to stop or control worrying

0=Not at all/1=Several days/2=More than half the days/3=Nearly every day

Kroenke K, Spitzer RL, Williams JB et al. (2007). Anxiety Disorders in Primary Care: Prevalence, Impairment, Comorbidity, and Detection. Ann Intern Med 2007; 146: 317–325.

Depression screen – PHQ-2

Over past 2 weeks, how often have you been bothered by:

Little interest or pleasure in doing things

Feeling down, depressed, or hopeless

0=Not at all/1=Several days/2=More than half the days/3=Nearly every day

Kroenke K, Spitzer RL, Williams JB. The Patient Health Questionnaire-2: validity of a two-item depression screener. Med Care 2003; 41: 1284–1292.

PTSD screen

1. During your lifetime, as a child, or adult, have you experienced or witnessed traumatic event(s) that involved harm to yourself or others?

2. If ‘yes’ in the past year, have you been troubled by flashbacks, nightmares, or thoughts of the trauma?

Alcohol and drug misuse screen

1. In the last year, have you ever drunk or used drugs more than you meant to?

2. Have you felt you wanted or needed to cut down on your drinking or drug use in the last year?

Where ≥1 positive may be suggestive of a problem

Brown RL, Leonard T, Rounds LA, Papasouliotis O. A two-item screening test for alcohol and other drug problems. J Fam Pract 1997; 44: 151–160.

Brown RL, Leonard T, Saunders LA, Papasouliotis O. A two-item conjoint screen for alcohol and other drug problems. J Am Board Fam Pract 2001; 14: 95–106

Cognitive screening questions

1. Do you experience frequent memory loss? (e.g. you forget the occurrence of special events, even the more recent ones, appointments etc.)

2. Do you feel that you are slower when reasoning, planning activities or solving problems?

3. Do you have difficulties paying attention (e.g. to a conversation, a book or a movie?)

Simioni S, Cavassini M, Annoni JM et al. Cognitive dysfunction in HIV patients despite long-standing suppression of viremia. AIDS 2010; 24: 1243–1250.

Cognitive screening measures – generalist

Montreal Cognitive Assessment

Nasreddine ZS, Phillips NA, Bédirian V et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc 2005; 53: 695–699.

Mini-mental state

Folstein M, Folstein SE, McHugh PR. ‘Mini-mental state’ a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189–198.

Addenbrooke’s Cognitive Examination (third edition)

Hsieh S, Schubert S, Hoon C et al. Validation of the Addenbrooke’s Cognitive Examination III in frontotemporal dementia and Alzheimer’s disease. Dement Geriatr Cogn Disord 2013; 36: 242–250.

Cognitive screening measures – computer based

Cogstate

Maruff P, Thomas E, Cysique L et al. Validity of the CogState brief battery: relationship to standardized tests and sensitivity to cognitive impairment in mild traumatic brain injury, schizophrenia, and AIDS dementia complex. Arch Clin Neuropsychol 2009; 24: 165–178.

CANTAB

Sahakian BJ, Elliott R, Low N et al. Neuropsychological deficits in tests of executive function in asymptomatic and symptomatic HIV-1 seropositive men. Psychol Med 1995; 25: 1233–1246.

Cognitive screening measures – HIV related

HIV Dementia Scale

Power C, Selnes OA, Grim JA, McArthur JC. HIV Dementia Scale: a rapid screening test. J Acquir Immune Defic Syndr Hum Retrovirol 1995; 8: 273–278.

International HIV Dementia Scale

Sacktor NC, Wong M, Nakasujja N et al. The International HIV Dementia Scale: a new rapid screening test for HIV dementia. AIDS 2005; 19: 1367–1374.