Mortality audit BHIVA Audit and Standards Sub- Committee.

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Mortality audit Mortality audit BHIVA Audit and Standards BHIVA Audit and Standards Sub-Committee Sub-Committee

Transcript of Mortality audit BHIVA Audit and Standards Sub- Committee.

Page 1: Mortality audit BHIVA Audit and Standards Sub- Committee.

Mortality auditMortality audit

BHIVA Audit and Standards BHIVA Audit and Standards Sub-CommitteeSub-Committee

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Participating centresParticipating centres

Responses were received from 133 clinical Responses were received from 133 clinical centres:centres:

80% outside the NHS London region, 19% 80% outside the NHS London region, 19% in the London region, 1% unstated.in the London region, 1% unstated.

19% serving 1-50 HIV patients, 23% 51-19% serving 1-50 HIV patients, 23% 51-100, 20% 101-200, 21% 201-500, 17% more 100, 20% 101-200, 21% 201-500, 17% more than 500 patients.than 500 patients.

40 centres reported no deaths among their 40 centres reported no deaths among their adult HIV patients in the preceding year, adult HIV patients in the preceding year, including 52% of those serving 100 or fewer including 52% of those serving 100 or fewer patients.patients.

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Information on deathsInformation on deaths

Respondents were asked how they find Respondents were asked how they find out when HIV patients under their care out when HIV patients under their care die in the community (more than one die in the community (more than one answer was allowed):answer was allowed):

61% said via grapevine/WOM61% said via grapevine/WOM 49% via routine follow-up49% via routine follow-up 41% via community HIV team41% via community HIV team 13% formal network meetings13% formal network meetings 21% other.21% other.

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Information on deaths Information on deaths (cont)(cont)

When asked how they would find out if When asked how they would find out if HIV patients referred to HIV patients referred to tertiary/specialist services had died:tertiary/specialist services had died:

34% did not answer34% did not answer 20% described active follow up20% described active follow up 26% described passive receipt of 26% described passive receipt of

feedbackfeedback 3% gave answers suggesting they 3% gave answers suggesting they

might not always knowmight not always know Information was unclear for the Information was unclear for the

remainder.remainder.

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Reporting of deathsReporting of deaths

76% of respondents said deaths of 76% of respondents said deaths of HIV patients at their centres are HIV patients at their centres are routinely reported to the Health routinely reported to the Health Protection AgencyProtection Agency

2% said deaths were not routinely 2% said deaths were not routinely reportedreported

7% had experienced no deaths7% had experienced no deaths 15% were unsure or did not 15% were unsure or did not

answer.answer.

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Reviews of HIV deathsReviews of HIV deaths

Centre policies on reviewing deaths Centre policies on reviewing deaths among adult patients receiving HIV care:among adult patients receiving HIV care:

24% formally review all deaths24% formally review all deaths 11% review in specific circumstances11% review in specific circumstances 20% review if clinicians have concerns20% review if clinicians have concerns 39% no clear policy39% no clear policy 5% not sure or no answer.5% not sure or no answer.

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Death review processDeath review process

22% of centres involve 22% of centres involve hospital/community MDThospital/community MDT

28% hospital MDT28% hospital MDT 28% medical team only28% medical team only 8% other8% other 14% no answer.14% no answer.

At 48% of centres at least some At 48% of centres at least some reviews involve discussing the death reviews involve discussing the death at a meeting. Other methods include at a meeting. Other methods include reading case notes.reading case notes.

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Death review contentDeath review content

Issues usually considered in reviews of HIV Issues usually considered in reviews of HIV deaths (more than one answer allowed):deaths (more than one answer allowed):

82% clinical care at the centre 82% clinical care at the centre concernedconcerned

59% clinical care elsewhere, if relevant59% clinical care elsewhere, if relevant 59% social circumstanes59% social circumstanes 55% pattern of attendance55% pattern of attendance 8% other.8% other.

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Value of death reviewsValue of death reviews

5% of respondents rated as “very 5% of respondents rated as “very valuable, have led to significant valuable, have led to significant changes in policy or practice”changes in policy or practice”

27% as “valuable, have led to 27% as “valuable, have led to modest changes in policy or modest changes in policy or practice”practice”

31% “Useful for education only”31% “Useful for education only” 2% “Not useful”2% “Not useful” 35% not sure or no answer.35% not sure or no answer.

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Impact and lessons learnt Impact and lessons learnt from death reviewsfrom death reviews

Consultant-led decisions to test for Consultant-led decisions to test for HIV in unconscious patientsHIV in unconscious patients

Stopped using D4T/ddI backboneStopped using D4T/ddI backbone Refer complex cases to regional Refer complex cases to regional

centre early in illnesscentre early in illness Check CD4 for new patients via Check CD4 for new patients via

pathology computer link within 2 pathology computer link within 2 days instead of waiting for paper days instead of waiting for paper results, and act if <200results, and act if <200

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Impact and lessons learnt Impact and lessons learnt from death reviews, from death reviews,

continuedcontinued Need for multi-disciplinary Need for multi-disciplinary

involvement at all stages of care – involvement at all stages of care – established social worker post for established social worker post for black/ethnic minority patientsblack/ethnic minority patients

Influenced prescribing policyInfluenced prescribing policy HIV team alerted each time a patient is HIV team alerted each time a patient is

admitted (for reasons other than HIV)admitted (for reasons other than HIV) Previous 3 deaths in prisoners with Previous 3 deaths in prisoners with

previously undiagnosed HIV. Agreed previously undiagnosed HIV. Agreed with physicians to refer inpatients to with physicians to refer inpatients to large centre.large centre.

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Impact and lessons learnt Impact and lessons learnt from death reviews, from death reviews,

continuedcontinued Greater awareness of causes of Greater awareness of causes of

deathdeath Improving communication between Improving communication between

parties and setting up a care pathwayparties and setting up a care pathway Add antifungal agents in PCP at day Add antifungal agents in PCP at day

7 unless much improved. Pericardial 7 unless much improved. Pericardial effusion - drain always when effusion - drain always when necessary and assume it's TB. Start necessary and assume it's TB. Start TB treatment early in ill patients & TB treatment early in ill patients & try to prevent stroke etctry to prevent stroke etc

Review of diagnostic procedure.Review of diagnostic procedure.

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Impact and lessons learnt Impact and lessons learnt from death reviews, from death reviews,

continuedcontinued Encourages involvement of primary care Encourages involvement of primary care

in management of non-HIV-related health in management of non-HIV-related health problemsproblems

Alerted GPs to be more vigilant about Alerted GPs to be more vigilant about atypical, and usually late, presentationatypical, and usually late, presentation

Decision to refer complex cases to Decision to refer complex cases to regional centre regional centre earlyearly

Timely discharge summaries. Better Timely discharge summaries. Better liaison between inpatient and outpatient liaison between inpatient and outpatient HIV servicesHIV services

Improved the procedures of shared care.Improved the procedures of shared care.

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Impact and lessons learnt Impact and lessons learnt from death reviews, from death reviews,

continuedcontinued Improved readiness to use empirical TB Improved readiness to use empirical TB

therapytherapy Hospital consultants & other medical Hospital consultants & other medical

colleagues more aware about when to colleagues more aware about when to request HIV testrequest HIV test

Helped [?TB] teams to liaise and Helped [?TB] teams to liaise and communicate with more involvement of communicate with more involvement of the HIV teamthe HIV team

Planned improved communication with Planned improved communication with other partiesother parties

Better liaison between surgeons and Better liaison between surgeons and medical teams.medical teams.

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Impact and lessons learnt Impact and lessons learnt from death reviews, from death reviews,

continuedcontinued Managing complex cases in the Managing complex cases in the

community - increase awareness community - increase awareness amongst primary care, district amongst primary care, district nursing and palliative care teamsnursing and palliative care teams

Increased awareness of lactic Increased awareness of lactic acidosis, its risk factors and need acidosis, its risk factors and need to collect blood in right bottleto collect blood in right bottle

Clinical and management lessons.Clinical and management lessons.

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Impact and lessons learnt Impact and lessons learnt from participating in this from participating in this

auditauditCentre X: Centre X:

““I have found this a very educational I have found this a very educational exercise on many levels. exercise on many levels.

“… “… the sicker patients… have been in the sicker patients… have been in [referral centre] at the time of their death…[referral centre] at the time of their death…

“… “… patients who are on the wards at [our patients who are on the wards at [our own centre] are under the care of the medics own centre] are under the care of the medics and although we think we know about most and although we think we know about most of them this is not always the case.of them this is not always the case.

[regarding the cases submitted] “…This has [regarding the cases submitted] “…This has immediately revealed huge data gaps and a immediately revealed huge data gaps and a lack of communication between the various lack of communication between the various centres”.centres”.

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Impact and lessons learnt Impact and lessons learnt from participating in this from participating in this

audit, cont.audit, cont.Centre Y: Centre Y:

“… “… considerable disorder… many considerable disorder… many parts of the clinical record were parts of the clinical record were effectively irretrievable… effectively irretrievable…

“… “… disregard for the importance of disregard for the importance of medical records of the relatively medical records of the relatively recently deceased… recently deceased…

“… “… a matter I will take up with our a matter I will take up with our Medical Director”.Medical Director”.

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Case note reviewCase note review

89 centres submitted case note review data 89 centres submitted case note review data for 397 deaths among adults with HIV:for 397 deaths among adults with HIV:

10 died outside the audit period of 10 died outside the audit period of October 2004-September 2005 and October 2004-September 2005 and were excluded from analysis.were excluded from analysis.

The date of death was missing for a The date of death was missing for a further 8. These were included in the further 8. These were included in the analysis.analysis.

Thus 387 deaths were analysed.Thus 387 deaths were analysed.

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Patient demographicsPatient demographics

Male 74%

Female 24%

Not stated 2%White 57%

Black-African 33%

Black-Caribbean 2%Other 5%

Not stated 4%

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Age and place of deathAge and place of death

<30 7%

30-50 65%

>50 27%

Not stated 1%

UK hospital 72%

UK community 22%

Outside UK 2%

Not stated 4%

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Injection of non-Injection of non-prescribed drugsprescribed drugs

309 (80%) of patients had no 309 (80%) of patients had no history of injecting drug usehistory of injecting drug use

33 (9%) had such a history but 33 (9%) had such a history but stopped prior to their final illnessstopped prior to their final illness

18 (5%) continued injecting drug 18 (5%) continued injecting drug use until onset of final illness.use until onset of final illness.

27 (7%) not known.27 (7%) not known.

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CD4 and VL in last six CD4 and VL in last six months of lifemonths of life

0% 10% 20% 30% 40%

Not available>350

201-350101-200

51-1000-50

0% 10% 20% 30% 40%

Not available0-50

51-400401-1000

1001-10,00010,001-

>100,000

CD4 in cells/l

VL in copies/ml

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Immediate cause of Immediate cause of deathdeath

Top bars: reclassified during audit

Bottom bars: as initially reported

0% 2% 4% 6% 8% 10% 12% 14%

Not knownOther, not related to HIV

OverdoseAccident/injury

SuicideChronic liver disease due to co-infection/alcohol

Other disease probably related to HIVRenalCVD

Multiorgan end-stage HIVOther malignancy

DementiaKS

LymphomaOther OI

TBPCP

Bacterial sepsis

Percentage of patients

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Scenario leading to Scenario leading to deathdeath

Top bars: reclassified during audit

Bottom bars: as initially reported

0% 10% 20% 30% 40%

NK/not stated

None of above

Treatment delayed/not provided because ineligible for NHS

Died in community without seeking care

Unable to take treatment - toxicity/intolerance

Successfully treated but suffered catastrophic event

MDR HIV, run out of options

Known HIV, not under regular care, re-presented too late

Chose not to receive treatment

Treatment ineffective due to poor adherence

Under care but had untreatable complication

Diagnosed too late for effective treatment

Death not directly related to HIV

Percentage of deaths

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Deaths not directly related Deaths not directly related to HIVto HIV

123 (32%) of deaths were considered not 123 (32%) of deaths were considered not directly HIV-related. These comprised:directly HIV-related. These comprised:

30 (7.8% of all deaths) malignancies 30 (7.8% of all deaths) malignancies 22 (5.7%) liver disease 22 (5.7%) liver disease 17 (4.4%) CVD17 (4.4%) CVD 7 (1.8%) suicide 7 (1.8%) suicide 7 (1.8%) sepsis7 (1.8%) sepsis 6 (1.6%) accident/injury, including one 6 (1.6%) accident/injury, including one

homicidehomicide 4 (1.0%) overdose4 (1.0%) overdose 1 (0.3%) renal disease1 (0.3%) renal disease 29 (7.5%) other or not stated.29 (7.5%) other or not stated.

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Malignancy deaths were as Malignancy deaths were as follows:follows:

29 lymphoma*29 lymphoma*

6 liver (of which 2 6 liver (of which 2 reported as liver reported as liver disease rather than disease rather than malignancy)malignancy)

6 lung or bronchus6 lung or bronchus

3 anal*3 anal*

2 adenocarcinoma2 adenocarcinoma

2 kidney2 kidney

2 oesophagus 2 oesophagus

2 penis2 penis

2 prostate2 prostate

1 each bladder, 1 each bladder, bowel, breast, cervix*, bowel, breast, cervix*, Merkel cell, multiple Merkel cell, multiple myeloma, pancreasmyeloma, pancreas

5 not known or not 5 not known or not stated**stated**

* Considered directly related to HIV** One considered directly related to HIV.

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Cardiovascular diseaseCardiovascular disease

CVD was the immediate cause of death for CVD was the immediate cause of death for 25 (6.5%) patients. This was not all IHD: 25 (6.5%) patients. This was not all IHD:

2 HIV-related pulmonary hypertension 2 HIV-related pulmonary hypertension 1 sub-arachnoid haemorrhage in 1 sub-arachnoid haemorrhage in

alcoholic patient with cardiomyopathyalcoholic patient with cardiomyopathy 3 other cardiomyopathy3 other cardiomyopathy 1 viral myocarditis.1 viral myocarditis.

17 of the 25 CVD deaths were classified 17 of the 25 CVD deaths were classified by the reporting centre as not related to by the reporting centre as not related to HIV.HIV.

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Impact of late diagnosis Impact of late diagnosis of HIVof HIV

88 (23%) deaths were reported as due to 88 (23%) deaths were reported as due to HIV diagnosis too late for effective HIV diagnosis too late for effective treatmenttreatment

5 further deaths occurring within 3 months 5 further deaths occurring within 3 months of diagnosis were reclassified as due to late of diagnosis were reclassified as due to late diagnosis, giving a total of 93 (24% of all diagnosis, giving a total of 93 (24% of all deaths, 35% of HIV-related deaths)deaths, 35% of HIV-related deaths)

This is a minimum as some deaths attributed to This is a minimum as some deaths attributed to untreatable complications of HIV involved untreatable complications of HIV involved conditions which early treatment could have conditions which early treatment could have prevented. Also, there may be under-prevented. Also, there may be under-ascertainment of deaths occurring without ascertainment of deaths occurring without involvement of HIV specialist services.involvement of HIV specialist services.

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Late-diagnosed patient Late-diagnosed patient characteristicscharacteristics

Among patients whose deaths Among patients whose deaths attributed to late diagnosis of HIV:attributed to late diagnosis of HIV:

10.8% were aged under 30 10.8% were aged under 30 compared with 5.8% dying in other compared with 5.8% dying in other scenariosscenarios

31.2% were white compared with 31.2% were white compared with 65.0%.65.0%.

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Causes of death related to late Causes of death related to late diagnosisdiagnosis

28 PCP28 PCP

16 OI16 OI

9 TB9 TB

8 lymphoma8 lymphoma

8 sepsis8 sepsis

7 multi-organ HIV7 multi-organ HIV

3 KS3 KS

3 CVD3 CVD

2 renal2 renal

1 malignancy1 malignancy

6 other or multiple 6 other or multiple HIV relatedHIV related

2 not known2 not known

Causes of deaths attributed directly to late Causes of deaths attributed directly to late diagnosis of HIV were:diagnosis of HIV were:

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Clinician delay in Clinician delay in diagnosisdiagnosis

In 16 cases, the narrative suggested In 16 cases, the narrative suggested possible clinician delay in diagnosing HIV possible clinician delay in diagnosing HIV after the patient had presented with after the patient had presented with symptomatic illness:symptomatic illness:

8 (50%) of these patients were over 50 8 (50%) of these patients were over 50 at death (7 of whom were white), at death (7 of whom were white), compared with 96 (26%) of other deathscompared with 96 (26%) of other deaths

Co-morbidity may have confused the Co-morbidity may have confused the picture in at least two cases (established picture in at least two cases (established IHD, previous lung cancer). IHD, previous lung cancer).

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HIV testing in the ill HIV testing in the ill patientpatient

Two cases of clinician delay in diagnosis Two cases of clinician delay in diagnosis raise questions about HIV test raise questions about HIV test procedures for ill in-patients:procedures for ill in-patients:

Case 1: Admitted with weight loss Case 1: Admitted with weight loss and diarrhoea. Diagnosed HIV+ by and diarrhoea. Diagnosed HIV+ by GUM health advisor while on general GUM health advisor while on general medical ward, after which care medical ward, after which care transferred to ID team. transferred to ID team.

It is unclear why the medical team It is unclear why the medical team did not test for HIV without requiring did not test for HIV without requiring involvement of GUM health advisor.involvement of GUM health advisor.

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HIV testing in the ill HIV testing in the ill patient, contpatient, cont

Case 2: Presented with PUO 3/52 Case 2: Presented with PUO 3/52 before GU involved. Xray showed before GU involved. Xray showed features of PCP months before features of PCP months before admission. Case was formally reviewed admission. Case was formally reviewed at grand round which concluded that at grand round which concluded that “sexual history taking should be “sexual history taking should be mandatory” as part of PUO mandatory” as part of PUO investigation. investigation.

It is unclear why sexual history taking It is unclear why sexual history taking was identified as the priority, rather was identified as the priority, rather than HIV testing. than HIV testing.

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Starting HAARTStarting HAART

Six deaths resulted from new or Six deaths resulted from new or worsening disease soon after starting worsening disease soon after starting HAART, including three due to HAART, including three due to cryptococcal meningitis. cryptococcal meningitis.

These deaths may have included cases These deaths may have included cases of IRIS. of IRIS.

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Adverse reactions to Adverse reactions to therapytherapy

Five deaths were reported as definite or Five deaths were reported as definite or probable adverse reactions to HIV-related probable adverse reactions to HIV-related therapy:therapy:

3 lactic acidosis3 lactic acidosis 1 fulminant liver failure attributed to 1 fulminant liver failure attributed to

isoniazidisoniazid 1 pneumonia possibly associated with 1 pneumonia possibly associated with

non-Hodgkins lymphoma chemotherapy-non-Hodgkins lymphoma chemotherapy-related bone marrow suppression.related bone marrow suppression.

One death was reported as an adverse One death was reported as an adverse reaction to non-HIV therapy – osteoporosis reaction to non-HIV therapy – osteoporosis due to steroids for polymyositis, leading to due to steroids for polymyositis, leading to tibia fracture and then tibia fracture and then bronchopneumonia/sepsis.bronchopneumonia/sepsis.

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Adverse reactions, cont.Adverse reactions, cont.

Reported “possible” adverse reactions were Reported “possible” adverse reactions were more vague, but included: more vague, but included:

Patients who deteriorated after starting Patients who deteriorated after starting HAART as reported aboveHAART as reported above

3 CVD/MI - one reported as heavy 3 CVD/MI - one reported as heavy smoker, TC 5.4 TG 3.5, no family historysmoker, TC 5.4 TG 3.5, no family history

Cardiac arrest possibly secondary to Cardiac arrest possibly secondary to hyperkalaemia in lymphoma patienthyperkalaemia in lymphoma patient

Liver failure secondary to NASH, Liver failure secondary to NASH, “multifactorial aetiology including NRTIs “multifactorial aetiology including NRTIs and alcohol” and alcohol”

Possible bowel perforation related to KS Possible bowel perforation related to KS or steroid therapy for PCPor steroid therapy for PCP..

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Catastrophic eventsCatastrophic events

Seven deaths were classified as catastrophic Seven deaths were classified as catastrophic events in patients on treatment:events in patients on treatment:

3 lactic acidosis + 1fulminant liver 3 lactic acidosis + 1fulminant liver failure (from previous adverse events failure (from previous adverse events slide)slide)

1 MI - strong family history not 1 MI - strong family history not recognised because adoptedrecognised because adopted

1 right temporal lobe infarction 1 right temporal lobe infarction secondary to VZV vasculitissecondary to VZV vasculitis

1 pulmonary embolus.1 pulmonary embolus.

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Patient factorsPatient factors

Patient choice not to receive treatment Patient choice not to receive treatment accounted for 18 deaths. At least 3 had accounted for 18 deaths. At least 3 had previously taken ART.previously taken ART.

26 deaths were directly attributed to treatment 26 deaths were directly attributed to treatment being ineffective through poor adherence. being ineffective through poor adherence.

A history of poor adherence was noted in five A history of poor adherence was noted in five other cases – 3 where death was attributed to other cases – 3 where death was attributed to running out of treatment options for MDR HIV running out of treatment options for MDR HIV and 2 attributed to untreatable complications. and 2 attributed to untreatable complications. Poor attendance was noted in 2 further Poor attendance was noted in 2 further untreatable complications cases.untreatable complications cases.

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Deaths due to poor Deaths due to poor adherenceadherence

12 sepsis12 sepsis

2 PCP2 PCP

2 multi-organ HIV 2 multi-organ HIV

1 KS1 KS

1 systemic 1 systemic leishmaniasisleishmaniasis

1 PML1 PML

1 dementia1 dementia

1 pulmonary hypertension1 pulmonary hypertension

1 disseminated MAI1 disseminated MAI

1 presumptive MTB1 presumptive MTB

1 cerebral toxoplasmosis 1 cerebral toxoplasmosis + nosocomial + nosocomial bronchopneumoniabronchopneumonia

1 died with severe muscle 1 died with severe muscle wasting / diarrhoeawasting / diarrhoea

1 “advanced HIV disease”1 “advanced HIV disease”

Causes of deaths attributed directly to Causes of deaths attributed directly to treatment being ineffective because of poor treatment being ineffective because of poor adherence were:adherence were:

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Patient factors, cont.Patient factors, cont.

13 patients with a previous positive 13 patients with a previous positive HIV test had not been under regular HIV test had not been under regular care and re-presented too late for care and re-presented too late for effective treatment (including one who effective treatment (including one who had not returned to receive the test had not returned to receive the test result).result).

4 patients who were diagnosed late 4 patients who were diagnosed late with HIV were reported to have with HIV were reported to have previously refused testing.previously refused testing.

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UK residency and NHS UK residency and NHS entitlemententitlement

12 patients were known to have arrived 12 patients were known to have arrived in the UK within six months of death:in the UK within six months of death:

9 died as a result of late diagnosis of 9 died as a result of late diagnosis of HIV HIV

One death was not directly related to One death was not directly related to HIV (hepatocellular carcinoma, HIV (hepatocellular carcinoma, hepatitis B/C co-infection).hepatitis B/C co-infection).

No deaths were reported as due to No deaths were reported as due to treatment being delayed or denied treatment being delayed or denied because of ineligibility for NHS care.because of ineligibility for NHS care.

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Other possibly Other possibly remediable factorsremediable factors

26 cases suggested other possibly remediable 26 cases suggested other possibly remediable factors:factors:

Various communication and shared care Various communication and shared care issuesissues

Delay in critical care admission/incomplete Delay in critical care admission/incomplete medical review on transfermedical review on transfer

Need for pre-HAART CRAG testing for Need for pre-HAART CRAG testing for Africans with low CD4Africans with low CD4

Awareness of lactic acidosis and collecting Awareness of lactic acidosis and collecting blood in the right bottleblood in the right bottle

Earlier consideration of CMV treatmentEarlier consideration of CMV treatment

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Other possibly remediable Other possibly remediable factors, cont.factors, cont.

Need for early oncology input in KSNeed for early oncology input in KS More intensive therapy for Burkitt’s More intensive therapy for Burkitt’s

lymphomalymphoma Greater support for patient in denial Greater support for patient in denial

re HIV statusre HIV status Missed histology reportMissed histology report Importance of encouraging people to Importance of encouraging people to

start treatment when indicatedstart treatment when indicated More aggressive management of More aggressive management of

osteoporosis.osteoporosis.

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Post mortem and reviewPost mortem and review

Post mortems were known to have been Post mortems were known to have been done in 57 (15%) cases.done in 57 (15%) cases.

Of these, 41 were coronial, 11 Of these, 41 were coronial, 11 consented and information was missing consented and information was missing for 5.for 5.

Refusal of consent was cited as a Refusal of consent was cited as a reason for not performing a PM in 22 reason for not performing a PM in 22 cases.cases.

Lack of access to pathology was cited in Lack of access to pathology was cited in 13 cases from 7 centres.13 cases from 7 centres.

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Post mortem and review, Post mortem and review, cont.cont.

104 (27%) deaths had been 104 (27%) deaths had been reviewed at the reporting centre, reviewed at the reporting centre, and review was planned for 34 and review was planned for 34 (9%).(9%).

211 (55%) deaths had not been 211 (55%) deaths had not been reviewed.reviewed.

Information was lacking for 38 Information was lacking for 38 (10%).(10%).

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Certification of deaths due Certification of deaths due to HIVto HIV

According to the centre questionnaire:According to the centre questionnaire: 60% of respondents always write HIV 60% of respondents always write HIV

on the certificate and/or tick the box on the certificate and/or tick the box to indicate more information availableto indicate more information available

1% sometimes neither write HIV nor 1% sometimes neither write HIV nor tick the boxtick the box

35% have not certified HIV deaths35% have not certified HIV deaths 5% were not sure or did not answer.5% were not sure or did not answer.

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Death certification, cont.Death certification, cont.

However, in the case note review, HIV However, in the case note review, HIV was was notnot written on the certificate written on the certificate andand the box was the box was notnot ticked in 39 (10%) ticked in 39 (10%) cases.cases.

Only 12 of these 39 deaths were Only 12 of these 39 deaths were reported as not directly related to HIV reported as not directly related to HIV (a further 4 were re-classified as such (a further 4 were re-classified as such during the audit)during the audit)

Information about the certificate was Information about the certificate was lacking in 195 (50%) cases.lacking in 195 (50%) cases.

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ConclusionsConclusions

Late diagnosis and causes not directly Late diagnosis and causes not directly related to HIV account for the related to HIV account for the majority of deaths in adults with HIV. majority of deaths in adults with HIV.

There is some evidence of clinician There is some evidence of clinician delay in diagnosing HIV.delay in diagnosing HIV.

Deaths due to adverse reactions to Deaths due to adverse reactions to HIV therapy are reassuringly rare.HIV therapy are reassuringly rare.

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Conclusions, cont.Conclusions, cont.

Specific causes of death are Specific causes of death are predominantly:predominantly:

““Classical AIDS” including PCP, Classical AIDS” including PCP, sepsis, lymphoma and TBsepsis, lymphoma and TB

MalignanciesMalignancies Liver disease due to hepatitis B/C Liver disease due to hepatitis B/C

co-infection and/or alcoholco-infection and/or alcohol Cardiovascular disease.Cardiovascular disease.

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Conclusions, cont.Conclusions, cont.

This study has identified some specific issues, This study has identified some specific issues, including:including:

Mechanisms for informing centres when Mechanisms for informing centres when patients have died in the community or at patients have died in the community or at tertiary referral centrestertiary referral centres

Importance of good communication and Importance of good communication and prompt, effective referral pathwaysprompt, effective referral pathways

Value of death reviewsValue of death reviews Awareness of lactic acidosisAwareness of lactic acidosis Need for improvement in death certification.Need for improvement in death certification.

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Conclusions, cont.Conclusions, cont.

For some centres, data gathering for For some centres, data gathering for this study has been an instructive this study has been an instructive exercise in itself, and has identified exercise in itself, and has identified issues of communication and record-issues of communication and record-keeping.keeping.

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RecommendationsRecommendations BHIVA requests its members to BHIVA requests its members to

discuss these findings at local grand discuss these findings at local grand rounds, to communicate the impact of rounds, to communicate the impact of late HIV diagnosis to non-HIV late HIV diagnosis to non-HIV clinicians and jointly consider how to clinicians and jointly consider how to facilitate rapid diagnosis and transfer facilitate rapid diagnosis and transfer of patients to specialised HIV care. of patients to specialised HIV care.

BHIVA asks EAGA and the Department BHIVA asks EAGA and the Department of Health to consider how to promote of Health to consider how to promote more routine HIV testing in generic more routine HIV testing in generic services as well as specialist services as well as specialist HIV/GU/sexual health settings.HIV/GU/sexual health settings.