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

Post TB lung disease context Bigger problem than acute infection in costs and DALYS in USA Pasipanodya et al Chest 2007; 131: 1817-1824. 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: 206-212 CHEST 2007; 131(6): 1817-1824. 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

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

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

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

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

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.

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

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

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

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” https://vimeo.com/163691621