Implementing Pulmonary Rehabilitation in Low Resource Settings Rupert.jones@plymouth.ac.uk Rupert Jones Senior Clinical Research Fellow Plymouth School Of Medicine

The dream- Rehab in Africa for chronic lung disease Rehab is effective improving : quality of life exercise tolerance, health care consumption, exacerbations mortality Uses local resources no expensive imports Sustainable Scalable Addresses forgotten message that non-drug treatments work

Previous experience Started PR in 1997 in my practice in Plymouth Helped establish PR in other sites in UK, Denmark & Norway IPCRG central to this Edinburgh curry house 2012

Environment Wanted to develop a culturally appropriate model Came to Mulago hospital spoke to consultants, physios, nurses, researchers… even the Director. Culturally appropriate, but they wanted something conventional

Mulago Hospital Pilot phase Feasibility acceptability Clarifying Recruitment and retention Assessment Safety and outcome Intervention Data management Barriers and facilitators / improvements

Post TB consultations at Mulago Hospital approx 20% of outpatient respiratory consultations Symptoms Number (n=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

Patients- Who needs it in LMICs? Any chronic lung disease with persistent breathlessness “COPD” relates to tobacco / biomass smoke and infections Post TB in specific countries Identification Referral process

Entry criteria standard MRC dyspnoea scale 2 or higher Previous TB treatment or confirmed COPD diagnosis No unstable cardiovascular disease, locomotor difficulties that preclude exercise training Exclusion criteria: Smear positive TB for those with previous TB treatment Unwilling or unable to attend a PR programme Unable to provide informed consent.

Getting started Work with experienced rehab experts Work with respiratory leaders Access to Patients Access to physios Access to research experience / data management Suitable venue Key attribute for the team is enthusiasm

Getting started - money Get funding for a pilot project: Health service (special pots eg winter pressures money/ development funds) Research grants Charities Don ‘t wait for money for pilot, get it started and the money will come

Equipment and venue Low level equipment Space for: Venue accessible and cool Space for: exercise circuit shuttle walking tests (10m) or Access, phone Resuscitation equipment 13

The team Multidisciplinary team comprising: Medical leader Exercise practitioner/physio Respiratory nurse specialist Co-ordinator Data management Staff : participant ratios according to risk assessment Volunteers Exercise Education US 1:4 1:8 UK 1:16 Nici et al ERS/ATS statement on PR 2005

Exercise regime Follow evidenced based guidance: Manuals Training videos Support from established programmes Tailor exercise to setting Resistance Endurance Flexibility Physio mentoring 12 15

Outcome measures Use standard measures to compare with other programmes Record before, after and follow up. Questionnaires- Disease specific quality of life (CCQ) PHQ-9 EQ5D Exercise capacity: Incremental shuttle walk test 5 times Sit to Stand Biometrics Completion rates

Developing a toolkit Standard tools adaptable to local circumstances: Protocols Screening forms Assessment forms Invitation letters Data collection sheets Data handling procedures Exercise regimes Education materials

Training videos Completing case report form Incremental shuttle walk test Sit to stand test Exercise regime Individual prescribing and Individual monitoring and increasing

Establishing in Crete

Summary- the current nightmare The lungs of the poor are getting more poorly, making the poor poorer Biomass TB HIV Tobacco Occupational exposure Outdoor air pollution

Potential Large central database Global growth Different formats 2015 Bangladesh 2016 Crete, Vietnam 2017 Kyrgystan If funding approved RCTs in Kampala Zambia, Kenya, Tanzania & Malawi Potential for many other countries- Benin, Nigeria, Bulgaria, Egypt, Ethiopia… Different formats Manual based and internet based rehab Post-TB / COPD / Post discharge Exercise consultations for those unable to attend Large central database

For global expansion, we will follow great leaders!

The dream - Rehab in LMICs across the globe IPCRG led with support from ERS, ELF etc Scientifically measured, delivered with compassion “Pulmonary Rehabilitation in Uganda - a life-giving programme for people with chronic lung disease”  Watch: https://vimeo.com/163691621