1. Rupert Jones Jill Pooler; Bruce Kirenga; Winceslas Katagira
Lessons from designing and implementing pulmonary rehabilitation in Kampala
Rupert Jones
Jill Pooler; Bruce Kirenga; Winceslas Katagira

2. Post TB lung disease context
Bigger problem than acute infection in costs and DALYS in USA
Pasipanodya et al Chest 2007; 131:
Worse in LMICs with late diagnosis, poor treatment adherence, MDR etc
India
98% had residual radiological sequelae
96% patients has spirometric defect
78% had persistent respiratory symptoms
Neeta Singla et al Ind J Tuberc 2009; 56:
CHEST 2007; 131(6):
75% disability from chronic
Disease burden beyond the infection is not well estimated.
Jotam G Pasipanodya et al studied burden beyond infection in 177 TB patients in Texas USA:
Total DALYS=1189
23% were from years of life-lost
2% were from years lived-with-disability-acute
75% were from years lived-with-disability-chronic

3. Post TB consultations at Mulago Hospital approx 20% of outpatient respiratory consultations
Symptoms
Number=106
Percent
Cough 68 64
Chest pains 42 40
Haemoptysis 24 23
Dyspnoea 18 17
Weight loss 14 13
No treatment for post TB symptoms
Many get unnecessary, expensive and ineffective rept TB Rxs
Disability & Stigma destroys peoples lives

4. Change you planned to make
Implement PR in Uganda to see impact on respiratory symptoms and quality of life
Assess:
Feasibility of recruiting post TB patients
Set up a rehab team and delivering high quality programme
Setup the assessment process inc inclusion and exclusion criteria
Checks for safety and suitability
Outcome measures at:
baseline
end of rehab
six weeks after completing
Qualitative interviews
patients completing or declining rehab and stakeholders

5. Strategy for change Set up international team Uganda: UK Experts in:
TB and respiratory experts
Physiotherapist
Data managers UK
Experts in:
Rehab
research methodologies (Stats, qualitative and research design)
Respiratory management / systems

6. Strategy for change (2) Do it anyway and the money will follow:
£5K from Almirall to start pilot
£18K from IPCRG to complete pilot
£162K from MRC for development study
Training:
RJ visited Uganda
Richard, Physio from Kampala, to Leicester to train
Richard designed training materials
Extensive qualitative research component

7. What happened? 2 pilot groups 22 patients Then development study:
March - December 2015
4 groups were conducted
Screened 193 patients
72 were assessed
46 were suitable
44 started rehab (17 male; mean age 44 years, range 17-83)
42 (95%) completing rehab
39 (85%) followed 6 week after.

8. Lessons learned PR is feasible using local resources
More expensive than expected
Patients loved it
Excellent quantitative results
Excellent qualitative data
Unexpected reductions in chest pains and haemoptysis

9. Outcomes Start End 6 wks after Incremental shuttle walk test (m) 298
Start
End
6 wks after
Incremental shuttle walk test (m)
298
380
374
Clinical COPD questionnaire
1.8
0.97
0.84
Sit to stand test (sec)
10.6
7.9
7.4
Patients gained weight
Depression disappeared
Strong reduction in chest pains and haemoptysis
No change in Cough

10. Mistakes
Shuttle walking test and Sit to stand -not conducted correctly in pilot
Relying on skype for communication
Video diaries and patient comments book – 6 month ethics delay
POSITIVES
Great fun
And will lead to better things- RCT and roll out in E Africa

11. Lessons learned (2) Patients testimony extremely powerful
Videos carry great message (training and awareness)
Rehab lesson important –effective non drug treatment
Patient education is hugely powerful to fight stigma
“Pulmonary Rehabilitation in Uganda - a life-giving programme for people with chronic lung disease”