Disclosures. ILD Management. Non-pharmacological management. Non-pharmacological Treatment of ILD

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1 Disclosures Non-pharmacological Treatment of ILD Dr. Collard has ongoing contractual relationships with the following organizations: Grants: NIH/NHLBI, NIH/NCATS Contracts: Alkermes, atyr, Bayer, Boehringer Ingelheim, Bristol-Myers Squibb, Genoa, Gilead, Moerae Matrix, Navitor, Patara, Pharma Capital Partners, PharmAkea, Prometic, Pulmonary Fibrosis Foundation, Takeda, Veracyte, Xfibra Harold R Collard, MD Director, Interstitial Lung Disease Program Associate Professor of Medicine University of California San Francisco Sally McLaughlin, RN, MSN Interstitial Lung Disease Program Nurse Educator University of California San Francisco Ms. McLaughlin has no contractual relationships to report. ILD Management Enroll in a clinical trial (when appropriate) Risk stratification Non-pharmacological management Pulmonary rehabilitation Mechanical ventilation Supplemental oxygen Support groups and patient education Palliative care Pharmacological Therapy Lung transplant (when appropriate) Non-pharmacological management Pulmonary rehabilitation Mechanical ventilation Supplemental oxygen Support groups and patient education Palliative care 1

2 Pulmonary rehabilitation Pulmonary rehabilitation a comprehensive intervention based on a thorough patient assessment followed by patient-tailored therapies that include, but are not limited to, exercise training, education, and behavior change. Spruit AJRCCM 2013;188:e13 Do you refer ILD patients to PR? A. Yes, and almost all of my patients go. B. Yes, but many of my patients cannot go due to insurance issues C. Yes, but many of my patients cannot go due to location/tansportation issues D. No, I do not find PR helpful in ILD Y e s, a n d a l m o s t a l l o f... 31% Y e s, b u t m a n y o f m y... 17% Y e s, b u t m a n y o f m y... 46% N o, I d o n o t f i n d P R h... 6% IPF: Pulmonary rehabilitation The majority of patients with IPF should be treated with pulmonary rehabilitation... WEAK YES recommendation LOW QUALITY evidence Raghu AJRCCM 2011;183:788 2

3 Change in 6MW distance after PR Change in dyspnea after PR Holland Cochrane Syst Review 2014 Holland Cochrane Syst Review 2014 Change in QOL after PR Duration of PR benefit? Holland Cochrane Syst Review 2014 Ryerson Resp Med 2014;108:203 3

4 Duration of PR benefit? Challenges to PR implementation Insufficient reimbursement for PR programs Lack of payer coverage for patients Lack of knowledge/awareness Limited training opportunities for staff Ryerson Resp Med 2014;108:203 Rochester AJRCCM 2015;192:1373 How often do you use MV in ILD? Mechanical ventilation A. Frequently (75% or greater) B. Often (25-75%) C. Rarely (less than 25%) 9% 28% 63% F r e q u e n t l y ( 7 5 % o r g r... O f t e n ( % ) R a r e l y ( l e s s t h a n 2 5 % ) 4

5 How often do you use MV in IPF? IPF: Mechanical ventilation A. Frequently (75% or greater) B. Often (25-75%) C. Rarely (less than 25%) F r e q u e n t l y ( 7 5 % o r g r... 77% 21% 2% O f t e n ( % ) R a r e l y ( l e s s t h a n 2 5 % ) The majority of patients with respiratory failure due to IPF should not receive mechanical ventilation... WEAK NO recommendation LOW QUALITY evidence Raghu AJRCCM 2011;183:788 MV in idiopathic pulmonary fibrosis Study using Nationwide Inpatient Sample (US) Patients from with IPF by ICD9 MV in idiopathic pulmonary fibrosis Study using Nationwide Inpatient Sample (US) Patients from with IPF by ICD9 17,700 patients with IPF 1703 received mechanical ventilation 778 received noninvasive ventilation 17,700 patients with IPF 1703 received mechanical ventilation 778 received noninvasive ventilation Rush Resp Med 2016;111:72 Rush Resp Med 2016;111:72 5

6 MV in idiopathic pulmonary fibrosis MV in idiopathic pulmonary fibrosis Mortality (%) Mortality (%) Intubation Non-invasive Mortality (%) Limitations: Mortality (%) Heterogeneous population by diagnosis - patients without IPF - patients intubated for non-respiratory 30 reason 2. Heterogeneous population by disease severity 40 - no measure (except for oxygen 20use) available sicker 2010 patients may 2012 not have been 2006 offered mechanical ventilation Intubation Non-invasive 50 Rush Resp Med 2016;111:72 Rush Resp Med 2016;111:72 Supplemental oxygen Support groups and patient education Palliative care ATS: Supplemental oxygen We recommend that patients with IPF and clinically significant resting hypoxemia should be treated with long-term oxygen therapy... STRONG YES recommendation VERY LOW QUALITY evidence Raghu AJRCCM 2011;183:788 6

7 Supplementary oxygen is: Supplemental Oxygen SECTION HEADING A. Easy for most of my patients to get covered B. Easy for some patients, difficult for others C. Difficult for most patients to get covered E a s y f o r m o s t o f m y p... 65% E a s y f o r s o m e p a t i e n t s... 27% D i f f i c u l t f o r m o s t p a t i... 8% Goal Keep saturation 90% at rest, with activity, during sleep, at altitude (planes) AND stay active 2011 Center for Medicare and Medicaid Services (CMS) Competitive Bidding Program = poor reimbursement to oxygen suppliers = restricted choice of, and access to, equipment = people in lower socioeconomic levels, rural areas, people who need higher flows unable to get the equipment they need ATS efforts 26 In general, my patients: A. Feel well-educated about their disease and have adequate support available B. Are confused and scared about their disease and lack support C. Are somewhere in between F e e l w e l l - e d u c a t e d a... 4% A r e c o n f u s e d a n d s c a r.. 39% A r e s o m e w h e r e i n b... 57% Support groups help patients & family Learn about disease and treatment Feel supported by others who understand Develop self-sufficiency Learn to navigate healthcare system more effectively Learn to be a more knowledgeable/engaged patient Make better decisions about their health care Maintain a sense of normalcy Improve coping skills Share stories with those who understand Help others Fell less anxious Change health behaviors Fell less isolated and more hopeful 7

8 Education Palliative Care and Hospice Distressing symptoms of dyspnea, cough, fatigue Decreased activity levels and difficulty carrying out ADLs Fear of suffocation Depression, fear, anxiety, social isolation, dependence Caregiver well-being Financial burdens Spiritual/existential distress Bereavement Summary Non-pharmacological care is am important component of comprehensive ILD care! Availability of key treatments (e.g. pulmonary rehabilitation, supplemental oxygen) can be a big problem for patients! In general, patients should be connected with support and advocacy groups! Non-pharmacological Treatment of ILD Harold R Collard, MD Director, Interstitial Lung Disease Program Associate Professor of Medicine University of California San Francisco Sally McLaughlin, RN, MSN Interstitial Lung Disease Program Nurse Educator University of California San Francisco 8