1. WHO Collaborating Centre for
Palliative Care, Policy &
Rehabilitation
The prevalence, experienceThe prevalence, experience
and management of painand management of pain
Secondary analysis of theSecondary analysis of the
Care & Support PHECare & Support PHE
Dr Richard Harding
Cicely Saunders Institute
King’s College London
www.csi.kcl.ac.uk

2. www.csi.kcl.ac.uk
Background: pain in people with HIVBackground: pain in people with HIV
• High prevalence of pain at all stages:
– UK outpatients n=778 53% 7 day period
prevalence (BMJ STI 2010)
– Ugandan outpatients 47% (J Pain 2012)
– Uganda newly diagnosed 76% (J Pall Med
2010)
– Newly diagnosed 11-76% (J Pain Symptom
Manage 2011)

3. www.csi.kcl.ac.uk
Does pain persist with ART?Does pain persist with ART?
• Systematic review of patients on treatment (in
review)
– muscle or joint 32.5%-72%
– non-specified 19%- 57.3%
• Among patients on ART in South Africa 51%
(S African Med J 2012)
• Analysis of UK sample showed no assoc
between ART status and symptom burden
(BMJ STI 2010)
• Greater burden for those on ART controlling
for CD4/VL (Int J STD AIDS 2006)

4. www.csi.kcl.ac.uk
Why is pain clinically important?Why is pain clinically important?
• As a distressing phenomenon:
– UK sample 14% of sample scored pain on worst
2/5 responses: “quite a bit” or “very much” (BMJ
STI)
– Uganda sample 41% (J Pall Med)
– Severe pain in 80% of advanced patients (Solano
2006; J Pain Symptom Manage 2011)
• Other clinical relevance
– Symptom burden associated with sexual risk taking
and poor adherence (AIDS Care 2009; BMJ STI
2010; AIDS & Behavior 2012)
– Symptom burden associated with viral rebound
(JAIDS 2010)

5. www.csi.kcl.ac.uk
Current focus on pain and symptomsCurrent focus on pain and symptoms
• 13/8629 abstracts at IAS 2004 investigated
pain/symptoms (Clin Infect Dis 2005)
• Skills lost of assessment and control (i.e.
palliation) integration (Lancet Infect Dis 2012)
• The Care & Support PHE included self-
reported multidimensional well being
– report here pain dimension
– unique dataset
• Q: What do you see as the possibilities for
USAID to drive forward the reduction of
suffering?

6. www.kcl.ac.uk/palliative
PEPFAR Care & Support Public Health EvaluationPEPFAR Care & Support Public Health Evaluation
PHASE 1
Objective: Describe nature and scope of PEPFAR HIV care
&support provision in Kenya/Uganda
Method: Cross-sectional survey of service configuration and
activity at stratified random sample of 10% of facilities inc
pharmacy review (n=120) & pt focus gps
PHASE 2
Objective: Evaluate costs and health outcomes
Method: Longitudinal quantitative patient study (n=1337)
among 12 largest facilities

7. www.kcl.ac.uk/palliative

8. www.csi.kcl.ac.uk
1. Analgesia availability1. Analgesia availability
• 3/12 facilities reported availability onsite of
strong opioids
– In pharmacy review 2/12 had drug in pharmacy
– 1/2 of these reported a stockout in previous six
months
• 6/12 reported weak opioids
– Pharmacy review 6/12
– 3/6 stockout previous six months
• 12/12 reported non-opioids
– Pharmacy review 12/12
– 5/12 stockout previous six months (Pall Med In Press)

9. www.csi.kcl.ac.uk
Quantitative cohortQuantitative cohort
• N=1337 outpatients
• Majority female (57.7-78.5%)
• Modal age 30-39
• 8.3-91.6% on ART
• N=1130 (84.5%) completed all time points

10. www.csi.kcl.ac.uk
2. Pain prevalence:2. Pain prevalence:
3 day POS pain3 day POS pain

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MOS-HIV at T0:
‘How much bodily pain have you generally
had during the past thirty days?’

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MOS-HIV at T0:
During the past thirty days, how much did
pain interfere with your normal work?’

13. www.csi.kcl.ac.uk
Analgesia receipt: KenyaAnalgesia receipt: Kenya
Timepoi
nt
T0 T1 T2 T3
n 696 634 613 592
fac else fac else fac else fac else
Non-
opioids
24.9 21.6 31.9 11.5 29.7 11.6 28.9 12.3
Weak
opioids
1.6 1.6 1.1 0.5 1.1 0.3 0.0 0.0
Strong
opioids
1.4 1.0 1.1 0.6 0.7 0.2 0.0 0.0

14. www.csi.kcl.ac.uk
Analgesia receipt: UgandaAnalgesia receipt: Uganda
Timepoint T0 T1 T2 T3
n 641 615 583 538
fac else fac else fac else fac else
Non-opioids 27.0 29.7 38.4 16.1 35.7 13.7 31.6 12.1
Weak opioids 2.2 2.2 1.6 1.1 0.9 0.7 0.9 0.4
Strong opioids 0.8 2.0 0.5 0.8 0.3 1.2 0.4 0.2

15. www.csi.kcl.ac.uk
Pain over time: POS 3 daysPain over time: POS 3 days

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MOS-HIV pain experience 30 daysMOS-HIV pain experience 30 days

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MOS-HIV pain interference 30 daysMOS-HIV pain interference 30 days

18. www.csi.kcl.ac.uk
Who presents with severe pain?Who presents with severe pain?
• Multivariable analysis:
– At any point in study those reporting severe pain
were likely to have lower wealth quintile (OR 0.80
(0.74-0.88) p<0.001
– and lower functional status OR=2.86 (2.38-3.43,
p<0.001)
– No assoc with gender, age, education, ART, CD4

19. www.csi.kcl.ac.uk
Affect of pain at baselineAffect of pain at baseline
• POS pain score associated with
– physical health (F=117.56, p<0.001)
– mental health (F=48.87, p<0.001)
• MOS HIV pain item associated with
– physical health (F=1316.2, p<0.001)
– mental health (F=297.8, p<0.001)

20. www.csi.kcl.ac.uk
Affect of pain over time on mental health:Affect of pain over time on mental health:
from baseline severe pain groupfrom baseline severe pain group

21. www.csi.kcl.ac.uk
Random effects model testing qualityRandom effects model testing quality
of life on mental health score over timeof life on mental health score over time
Coefficient 95% CIs Z p
Mental health
score at T0
0.33 0.29 to
0.36
19.47 <0.001
Combined pain
score
-6.60 -7.21 to
-6.00
-21.43 <0.001
Functional
status
-3.06 -3.48 to
-2.62
-13.89 <0.001
Wealth quintile 0.28 0.07 to
0.50
2.57 0.010
Constant 37.90
.

22. www.csi.kcl.ac.uk
Who receives analgesia?Who receives analgesia?
• Weak/strong opioid at any point:
– n=114 (8.5%) an opioid (n=23 morphine, n=49
codeine, n=42 both)
– Not assoc with gender, age, education, CD4,
wealth, ART use
– Assoc with functional status (OR=1.83, 95% CI
1.40-2.38)
• Non-opioid at any point:
– 63.2-100% depending on site
– Older people (OR 1.02 95% CI 1.00-1.04, p=0.010)
and poorer physical function (i.86, 1.42-2.44
P<0.001) assoc with receipt

23. www.csi.kcl.ac.uk
Pain over timePain over time
Combined
pain score
Time point
T0 T1 T2 T3
Low 22.4 34.9 43.4 51.9
Moderate 40.2 36.7 36.5 31.6
Severe 37.4 28.4 20.1 16.5
a) 687 participants (51.4%) reported severe pain on at least
one of the three outcome variables in the study
b) Only 11% reported consistently low pain
c) 14.6% of those who reported severe pain never received a
Step 1 analgesic. 9.5 % received a Step 2, and 6.3% a
step 3.

24. www.csi.kcl.ac.uk
What is pain?What is pain?
• A complex multidimensional concept
• “Pain is what the patient says it is”
• Requires detailed assessment especially in
HIV:
– Underlying disease, infections, cancer, treatment,
psychological, social and spiritual dimensions

25. www.csi.kcl.ac.uk
PhysicalPhysical
• “My whole body hurts and I spend a lot of time
in bed; I have no energy and I am not able to
get out of bed.” P6 Fac E, female, not on ART,
urban area, Kenya
• “In fact I don’t complain about these problems
such take an example of this problem with my
legs, I haven’t complained about it because I
realized that they were not painful as a whole
but I mostly experience pains in the joint.” P4
Fac L, female, age 42, on ART, urban area,
Uganda

26. www.csi.kcl.ac.uk
Psychosocial painPsychosocial pain
• “One neighbour commented recently, ‘I am surprised
this lame woman contracted HIV, do they also engage
in sex? Funny!’ Others keep reckoning ‘That one has
a soil notice, she is a moving grave... You go in for
her, be ready for death.’” P1 Fac L, male, age 37, on
ART, urban area, Uganda
• “I have never done so because none of them has ever
asked me about that. However, if they had asked I
would have explained as I have done it to you.” P5
Fac H, male, age 38, not on ART, urban area

27. www.csi.kcl.ac.uk
Spiritual/ existential painSpiritual/ existential pain
• “One thing that has really brought grief and pain to me
is that I acquired HIV at an early age before even
having a child that is what hurts me.” P3 Fac K,
Uganda
• “My biggest worry is about my future. I have no child
and my dreams are shuttered down and it hurts lots. It
is an inner most pain which I can’t explain to anybody
and when you see people who have died because of
this disease and yet they have been on ARVs and yet
they die mysteriously, I feel weighed down and lose
hope most often.” P3 Fac L, male, age 36, on ART,
urban area, Uganda

28. www.csi.kcl.ac.uk
Staff challenges to pain reliefStaff challenges to pain relief
• “What we don’t have is pain relief, we do not
have strong opioids like morphine but use
weak opioids like Ibrufene, diclofenac both
injection we have them but some strong
opioids like morphine syrup we don’t have but
we have pethedine injection.” S1 Fac G,
Nurse counsellor, 24 years’ experience,
Uganda

29. www.csi.kcl.ac.uk
• Interviewer: “Is pain managed well?”
• Respondent: “Yes”
• Interviewer: “What medicines do you use for pain?”
• Respondent: “We have brufen”
• Interviewer: “What about cases of severe pain?”
• Respondent: “We don’t have any other except brufen.”
S6 Fac A, Nurse counsellor, 6 years’ experience, Kenya

30. www.csi.kcl.ac.uk
DiscussionDiscussion
• Pain and symptom control are essential
components of HIV care
– WHO, UNAIDS
• Highly prevalent, distressing, and affect other
outcomes such as treatment efficacy and
transmission
• Pain can be effectively controlled using
existing knowledge (STI 2005)

31. www.csi.kcl.ac.uk
AssessmentAssessment
• We know that
– patients are not disclosing, clinicians are not asking
(Justice 2001, 2012),
– there is an expectation that pain should be
expected and endured in HIV (Harding 2005)
– ART has often refocused care and support to
virological control (Selwyn 20012)

32. www.csi.kcl.ac.uk
Simple assessment is possibleSimple assessment is possible
• Pain relief in Africa is cheap safe and
inexpensive (Logie at al 2005; 2012)
• Clinicians ask about what they feel able to
manage
• Simple clinical tools such as POS exist and
are rolled out in routine practice (“It helps me
to remember to ask about the things that
matter” HQLO 2008)
• All clinicians need basic skills, we can refer for
complex cases

33. www.csi.kcl.ac.uk
Drug availabilityDrug availability
• Need to have access to the WHO pain ladder
• Drug availability is a challenge (Harding
2005)- but analgesics are cheap
• Patients are “shopping around” for analgesic
access

34. www.csi.kcl.ac.uk
We can change simple things withinWe can change simple things within
existing HIV clinic staffexisting HIV clinic staff
• 37% scored in worst 3 responses for help or advice for their family
to plan for the future
• 29% “severe”, “very severe” or “overwhelming” pain
• 28% had not been able to share their feelings with family or friends
• 21% had never, rarely or occasionally felt at peace
• 16% experienced severe, very severe or overwhelming symptoms
• 12% had never, rarely or occasionally, felt that life was worthwhile
• 11% had been worried a lot, most, or all of the time
• In response, TOPCare Trial in Kenya & South Africa (BMC Infect Dis
2012)

35. www.csi.kcl.ac.uk
Monthly analysisMonthly analysis
Psychological well-being (MOS-HIV)Psychological well-being (MOS-HIV)
There is evidence for initial
improvement in intervention
study arm, which attenuates
over time.
Regression coefficient for effect of study arm on MHSS
data at monthly intervals throughout the study period
adjusting for baseline differences in partner status, TB
treatment, time since diagnosis, time on ART and baseline
MHSS score
Multivariate
regression
analysis
Coefficient (CI) p value
Baseline 0.25 (-0.76-1.25) 0.63
Month 1 4.12 (1.17-7.07) 0.01
Month 2 2.52 (-1.56-5.61) 0.11
Month 3 3.36 (0.30- 6.42) 0.03
Month 4 1.83 (-0.81-4.48) 0.17

36. www.csi.kcl.ac.uk
Monthly analysisMonthly analysis
Psychological well-being (GHQ-12)Psychological well-being (GHQ-12)
Multivariate
regression
analysis
Coefficient (CI) p value
Baseline -0.22 (-1.63-
1.20)
0.76
Month 1 -1.23 (-2.46-
0.01)
0.05
Month 2 -1.12 (-2.26-
0.02)
0.05
Month 3 -0.71 (-1.86-
0.45)
0.23
Month 4 -0.65 (-1.73-
0.42)
0.23
Initial more rapid improvement at
one and two month time points
attenuated over time.
Regression coefficient for effect of study arm on GHQ
data at monthly intervals throughout the study
period adjusting for partner status, TB treatment,
time since diagnosis, time on ART and baseline score

37. www.csi.kcl.ac.uk
Monthly analysisMonthly analysis
Social well-being (interpersonal factor)Social well-being (interpersonal factor)
There is evidence for
improvement in the intervention
arm from baseline throughout
the study period
Multivariate
regression
analysis
Coefficient (CI) p value
Baseline -0.82 (-0.53-
2.16)
0.23
Month 1 1.71 (0.50-2.93) 0.01
Month 2 1.79 (0.57-3.01) <0.01
Month 3 2.00 (0.68-3.33) <0.01
Month 4 1.87 (0.46-3.29) 0.01
Regression coefficient for effect of study arm on APCA
African POS interpersonal factor data at monthly intervals
throughout the study period adjusting for baseline
difference in partner status, TB treatment, time since
diagnosis, time on ART and baseline score.

38. www.csi.kcl.ac.uk
Area under curve (AUC) –Area under curve (AUC) –
psychological well-beingpsychological well-being
Variable
Regression
coefficient
(CI)
p value
Gender
0.77
(-9.46-11.01)
0.88
Age
-0.21
(-0.67-0.24)
0.36
Wealth
-3.84
(-7.56- -0.13)
0.04
Baseline score
19.02
(15.45-22.59)
<0.001
Study arm
9.76
(2.21-17.31)
0.01
Variable
Regression
coefficient (CI)
p value
Age
0.07
(-0.10-0.24)
0.43
Wealth
1.37
(-0.02-2.76)
0.05
Baseline
score
-1.41
(-1.81- -1.00)
<0.001
Study arm
-3.26
(-6.08- -0.42)
0.02
•Multivariate regression of MOS-HIV MHSS AUC and
variables which were statistically significant at bivariate
analysis.
•Longitudinal improvement is statistically significantly
and negatively associated with wealth and positively
associated with baseline score and study arm.
•Multivariate regression of GHQ-12 AUC and
variables which were statistically significant at
bivariate analysis.
•Improved psychiatric morbidity is statistically
significantly and negatively associated with wealth
and positively associated with baseline score and
study arm*

39. www.csi.kcl.ac.uk
Area under the curve (AUC) –Area under the curve (AUC) –
social well-beingsocial well-being
Variable
Regression
coefficient
(CI)
p value
Gender
-2.33
(-4.22- -0.45)
0.02
Partner status
0.04
(-0.05-0.13)
0.40
Number of
children
0.22
(-0.17- 0.60)
0.27
Baseline score
1.33
(1.12-1.54)
<0.001
Study arm
4.40
(2.92-5.87)
<0.001
• Multivariate regression of
APCA POS interpersonal
factor and variables
which were statistically
significant at bivariate
analysis.
• Social wellbeing is
statistically significantly
and positively associated
with being male, baseline
score and study arm

40. www.csi.kcl.ac.uk
Future directionsFuture directions
• What are the patterns of
– drug availability
– drug access
– policy facilitation/barriers
• What simple interventions can enhance pain assessment?
• What can improve effectiveness of management?
– particularly in Home Based Care
• What do we know about pain in the common HIV presentations of
TB/MDRTB and cancer? (Lancet Oncol 2013; Lancet Infect Dis 2012)
• How can we ensure we give equal clinical focus to the aspects of
wellbeing that matter to patients and families?
• How do we ensure that care and support optimises essential virological
outcomes by addressing the self-report needs of patients, including
pain and symptom control?
• Q: What do you see as the possibilities for USAID to drive forward the
reduction of suffering?