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The Role of the Nurse in HIV Care Eileen Nixon HIV Nurse Consultant Brighton and Sussex University Hospitals Aim of Presentation • Overview of key issues that affect people with HIV • Identify the role of the nurse in caring for people with HIV • Highlight nursing competencies required • Benchmark current competency level • Relate nursing role to course content Global Epidemic Adults and children estimated to be living with HIV, 2006 Eastern Europe & Central Asia Western & Central Europe North America 1.6 million [1.2 – 2.1 million] 2.1 million [1.1 – 3.0 million] Caribbean 230 000 North Africa & Middle East [210 000 – 270 000] 380 000 [270 000 – 500 000] Latin America Sub-Saharan Africa [1.4 –1.9 million] [20.9 – 24.3 million] 1.6 million 22.5 million Asia 4.9 million [3.7 – 6.7 million] Oceania 75 000 [53 000 – 120 000] Total: 33.2 (30.6 – 36.1) million Global Epidemic of HIV • • • • • • • • Multiple cultures of people affected Media coverage Immigration and asylum issues Political and ethical issues Discrimination Travel Returning to home countries Treatment eligibility Treatment Eligibility Emergency and lifesaving care is free TB treatment is free Separating “tourists” from other health seeking actions Balancing conversations about eligibility Prioritising health Discharge plans NMC Guidelines Can we see your passport, please? Stigma Stigma Nursing Role in Stigma • Appropriate universal precautions • Non-judgemental approach to care • Encouraging patients to become involved in service planning • Supporting patients with disclosure of HIV diagnosis • Supporting ongoing sexual relationships • Referral for counselling services • Peer Support • Addressing misconceptions Nursing Competencies - Stigma • Level 2: Recognises the impact of HIV/AIDS stigma on the patient experience of living with HIV • Level 2: Recognises difficulty in disclosing HIV diagnosis after death and acts as a patient advocate when this arises • Level 3: Proactively supports patients where stigma impacts on their health and well-being National HIV Nursing Competencies, 2007 Competency Levels Level 2 Registered Practitioner: Entry point for RN to HIV specialty or working with HIV in a nonspecialist setting Level 3 Senior Registered Practitioner: HIV specialist area at Team Leader, Charge Nurse or CNS level Level 4 Consultant Practitioner: Consultant or Senior Nurse Manager in HIV Late Presentation Defining Late Presentation ? • AIDS at diagnosis • AIDS within 3-12 months • CD4 < 200 • CD4 < 50 BHIVA Audit 2006: Scenario leading to death Death not directly related to HIV Diagnosed too late for effective treatment Under care but had untreatable complication Treatment ineffective due to poor adherence Chose not to receive treatment Known HIV, not under regular care, re-presented too late MDR HIV, run out of options Successfully treated but suffered catastrophic event Unable to take treatment - toxicity/intolerance Died in community without seeking care Treatment delayed/not provided because ineligible for NHS None of above NK/not stated Top bars: reclassified during audit Bottom bars: as initially reported 0% 10% 20% 30% 40% Percentage of deaths Mortality audit BHIVA audit and Standards Sub-Committee 2006; accessible at www.bhiva.org Evidence for late diagnosis in heterosexual men & women, and MSM – AIDS cases Late diagnosis is defined here as an interval of less than 3 months between HIV diagnosis and AIDS Number of AIDS cases diagnosed 1200 1000 1400 Diagnosed for 3 months or longer 1200 Late diagnosis 1000 800 800 600 600 400 400 200 200 0 0 Year of AIDS diagnosis Year of AIDS diagnosis Men who have sex with men Sex between men and women Data source: HIV/AIDS reports. Reports received by the end of September 2005. 23% 40 35 30 25 20 15 10 5 0 Number of admissions la te H pr A e A s N RT e n on te -H ref rs IV us H pr ers H AA o b IV R le pr T f m og ail re ure M Se a s s ro lig ion co na nv nc er y si on la te H pr A e A s N RT e n on te -H ref rs IV us H pr ers H AA o b IV R le pr T f m og ail re ure M Se a s s ro lig ion co na nv nc er y si on Late Presenters in Brighton last 100 admissions 37% 450 400 350 300 250 200 150 100 50 0 Bed days on Inpatient Unit HAART in late presenters • Wait , but not too long … – 2 weeks to 2 months • Avoid significant interactions – Rifampicin and PIs – Some chemotherapy and PIs • Avoid overlapping toxicities – AZT - high-dose septrin – “D” drugs - isoniazid • Avoid unnecessary diagnostic difficulties • Allow for other comorbidities – Renal dysfunction – NG administration if on ITU • Chose likely effective regimen – Avoid NNRTIs until genotype available Nursing care of late presenters • New HIV diagnosis • Coping with HIV and often AIDS diagnosis • Disclosure of diagnosis and contact tracing • Acute hospital care – usually prolonged • Ongoing risk assessment • Care of opportunistic infections • Support in starting ARV’s • Establishing support structures • Effective discharge planning and f/u • Employment and finance advice • Family planning and sexual health Nursing Care of Opportunistic Infections • Monitoring presenting condition – vital signs and observation • Monitoring for other opportunistic infections • Administering IV Treatments • Nutrition • Care of activities of daily living • Discharge Planning Nursing Competencies of LP • Level 2: demonstrates a knowledge and understanding of, and can identify the major signs and symptoms of acute and chronic HIV related conditions and risks of illness associated with relevant CD4 counts • Level 3: Recognises signs and symptoms of complex and unstable health problems requiring review by senior colleagues National HIV Nursing Competencies, 2007 Palliative and Terminal Care • Level 2: Is aware of the assessment needs of a patient who requires terminal care and the evidence based tools available e.g. Liverpool care pathway • Level 3: Makes a comprehensive assessment of a patients palliative care needs and fully assess the physical needs of a patient who requires terminal care National HIV Nursing Competencies, 2007 Increasing UK Epidemic HIV diagnoses, AIDS case reports and deaths in HIV-infected individuals, UK 8000 HIV diagnoses AIDS diagnoses Deaths Number of diagnoses 7000 6000 5000 4000 3000 2000 1000 0 1995 1996 1997 1998 1999 2000 2001 Year of diagnosis 1 Numbers will rise, for recent years, as further reports are received. Data Source: HIV/AIDS reports. Reports received by the end of September 2005. 2002 2003 2004 1 HIV/AIDS Mortality - Brighton 18 16 14 12 10 8 6 4 2 0 1993 1995 1997 1999 2001 Number of Patients in Brighton Clinic 1600 1400 1200 1000 800 600 400 200 0 8 19 2 8 19 4 8 19 6 8 19 8 9 19 0 Hete 9 19 2 9 19 MSM 4 9 19 6 9 19 Not stated 8 0 20 0 Total 0 20 2 0 20 4 6 -0 y a M Increasing Numbers of people with HIV • • • • • • • More patients Living with chronic HIV disease Co-morbidities Co-infections Treatment experienced Review of benefits Returning to work Modernisation of HIV services Changing focus of service delivery: • Clinic visits • Chronic manageable illness • ARV’s • Telephone/Email clinics • MDT • Patient continuity • Multicultural aspects • MOT Nurses role development: • Triage • Nurse Led Clinics • NHIVNA Competencies Activity v Resources: • GUM Targets • Primary Care • Sexual health screening Nursing Competencies in developing roles for nurses • Level 2: Describes the local policy relating to the inclusion/exclusion criteria for stable patients whether on or off therapy • Level 3: Identifies and implements essential aspects of managing stable patients, such as adherence, toxicity management and psychological and sexual health National HIV Nursing Competencies, 2007 Managing Patient Expectations • • • • • Keep patients informed Give explanations Address concerns Act on patient feedback Expert Patient Programme • User representation – Eliciting user views – Involving users in service provision Co-Morbidities and Co-Infections • Diabetes and insulin intolerance • CVD • Lipodystrophy • Liver disease • Hypogonadism • Osteoporosis • • • • • • Hepatitis B Hepatitis C Tuberculosis Leishmoniasis Infectious diseases Haemophilia Nursing people with chronic HIV disease • Chronic Disease NSF • Identifying what is and what is not related to HIV disease • Adjusting to multiple pathology • Long term therapeutic relationships • Empowering people to live with HIV • Coordinating appointments • Engaging with GP’s • Recognising when people are struggling Nursing Competencies in Comorbidities and co-infections • Level 2: Demonstrates an understanding of treatment choices open to people with HIV co-infections and co-morbidities • Level 3: Demonstrates an understanding of the administration, side effects and risks associated with treatment of different HIV co-infections and co-morbidities National HIV Nursing Competencies, 2007 Ageing and HIV Patient age in Brighton Cohort: 1996–2006 300 >50 years old >60 years old >70 years old Number of patients 250 200 150 100 50 0 1996 1998 2000 2002 2004 2006 Personal communication, M. Fisher, August 2007 Psychological Care Nursing Role in Psychological Care • Coping with diagnosis • Establishing support structures • Appropriately involving patients in care • Mental Health • Adjustment disorders • Health beliefs and behaviours • Chronic Disease Management • Empowering people to live with HIV • Expert patient Programmes • Social care, finances, employment Nursing Competencies in Psychological Care • L2: Demonstrates an awareness and understanding of the psychological and emotional impact of an HIV diagnosis on a newly diagnosed HIV patient, patients starting or switching therapy or a patient with acute, chronic, terminal condition or palliative needs • L3: Works autonomously to comprehensively assess complex psychological and emotional needs of the above groups of patients National HIV Nursing Competencies, 2007 Antiretroviral Therapy Nursing Role in Antiretroviral Therapy • Discuss common treatment options • Recognise common side effects (s/t and l/t) • Discuss treatment outcomes • Administer ARV’s correctly • Assess patients beliefs about ARV therapy • Assess adherence to ARV’s • Explain implications of poor adherence Nursing Competencies and ART • Level 2: Demonstrates an understanding of how ART works, drug classes, administration, times, dietary restrictions and key side effects • Level 3: Assess and triages problems associated with medications and side effects including short and long term side effects National HIV Nursing Competencies, 2007 Nursing Care and Adherence • Level 2: Recognises when situations are detrimental to the correct administration of ART, such as nausea and vomiting and hospitalisation • Level 3: Anticipates any threats to ART administration and intervenes to facilitate optimal adherence (i/p and o/p) National HIV Nursing Competencies, 2007 Sexual Health Number of new diagnoses of selected STIs, GUM clinics, United Kingdom: 2006 % change 2006 2005-2006 1997-2006 Chlamydia 113,585 4% 166% Genital warts 83,745 3% 22% Genital herpes 21,698 9% 31% Gonorrhoea 19,007 -1% 46% Syphilis 2,766 -1% 1,607% Routine GUM clinic returns 30/10/2008 Sexually Transmitted Infections, HPA Centre for Infections 3 HPA warns of continuing HIV and STI epidemic in gay men 23 November 2007 Role of the Nurse in Sexual Health of people with HIV • Promote prompt access to routine STI screening • Promote safer sex practices • Advise on disclosure / partner notification • Understand criminalisation • Family Planning possibilities • PEPSE Sexual Health Competencies • Level 2: Assists in the assessment and treatment of the sexual health needs of patients living with HIV • Level 3: Undertakes sexual health risk assessment as part of routine assessment of patients with HIV and describes treatment options for STIs National HIV Nursing Competencies, 2007 Health Promotion Health Promotion in HIV • CVD risks and smoking cessation • Nutrition • Exercise • Stress management • Mental health • Alcohol and drug use • Screening for hepatitis, cervical smears, lipids, BP, BMI Nursing Competencies in Health Promotion • Level 2: Demonstrates an understanding of maintaining a health lifestyle and how this relates to HIV • Level 3: Undertakes detailed risk assessment in relation to smoking, cardiovascular risk, sexual health etc. Develops action plan and makes onward referrals based on the assessment National HIV Nursing Competencies, 2007 Core Principles of HIV Nursing • Ability to identify stage of illness and disease manifestations including surrogate markers • Understanding ART and adherence • Holistic and patient centered approach to care • Incorporating the sociology of HIV into care • Managing the changing skills profile Adults and children estimated to be living with HIV, 2007 Western & Eastern Europe Central Europe & Central Asia 730 000 North America 1.2 million [760 000 – 2.0 million] Caribbean 230 000 1.5 million [580 000 – 1.0 million] [1.1 – 1.9 million] East Asia Middle East & North Africa [210 000 – 270 000] 380 000 [280 000 – 510 000] Sub-Saharan Africa Latin America 1.7 million [1.5 – 2.1 million] 22.0 million [20.5 – 23.6 million] 740 000 [480 000 – 1.1 million] South & South-East Asia 4.2 million [3.5Oceania – 5.3 million] 74 000 [66 000 – 93 000] Total: 33 million (30 – 36 million)