Models of care to better meet patient needs Gaps, needs and - PowerPoint PPT Presentation

Models of care to better meet patient needs Gaps, needs and opportunities - a patient perspective Christine Jeffery Executive Officer The Immune Deficiencies Foundation of Australia Limited (IDFA) Treasurer International Primary Immunodeficiency Patient Organisation (IPOPI)

What is a primary immune deficiency? The “bubble boy” disease.. Primary Immune Deficiency Diseases (PIDs) are caused by defects in the genes that control the immune system, so people with PIDs are born missing some or all of the parts of the immune system.  The World Health Organisation (WHO) recognises David Vetter, the “bubble boy”, had Severe Combined more than 240 PIDs. Immune Deficiency (SCID).  There is no cure for the majority of PIDs. This is fatal without a  PIDs can be mild, severe and fatal. Haematopoietic Stem Cell Transplantation (HSCT).  Many people with PIDs also have other comorbidities .

IDFA Background  Is the peak patient organisation for people affected by PIDs in Australia.  Is the 4 th largest patient organisation for PIDs in the world.  IDFA brings the PID community together by providing free education, resources, practical advice, emotional support, conferences, events and links members via social media.  Advocates for members to ensure accurate diagnosis and optimal treatment to provide a better quality of life.  IDFA does not receive funding from the Federal or State governments.

European model of care: PID principals of care This includes: 1. The role of specialised centres. 2. The importance of national and international registries. 3. The need for international collaboration and research. 4. The role of patient organisations. 5. Management and treatment options for PIDs. 6. Managing PID diagnosis and care in all countries. Frontiers in immunology Primary immune deficiencies principles of care Helen Chapel 1*, Johan Prevot 2, Hubert Bobby Gaspar 3,Teresa Español 4, Francisco A. Bonilla5, Leire Solis2, Josina Drabwell 2 andThe Editorial Board for Working Party on Principles of Care at IPOPI † 1 University of Oxford, Oxford, UK 2 International Patient Organisation for Primary Immunodeficiencies (IPOPI), Downderry, UK 3 University College London Institute of Child Health, London, UK 4 Hospital General Vall d’Hebron, Barcelona, Spain 5 Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA 15 December 2014 Information supplied from 30 countries

United Kingdom model of care: PID Patient centred chronic care management The emphasis is on: 1. The patient as an “expert” on their disease. 2. Healthcare teams manage the disease and comorbidities. 3. Self administered home therapy. 4. Disease management falls within the framework of other chronic disease management programs. 5 . “Primary practice” where nurse case managers or immunology centres assist the patient through education, support, and facilitate access to community resources. NCBI Resources Primary immunodeficiency disease: a model for case management of chronic diseases. Burton J 1 , Murphy E, Riley P. Author information 1 National Health Service, Oxford, England. janet.burton@orh.nhs.uk

Australian model of care (Clinical professionals): Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)  For a patient with a PID, the diagnosis, treatment and management is by an immunologist.  Most PIDs cannot be cured. Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal. PIDs need to be managed.  IDFA is affiliated with ASCIA.

Australian model of care (patient organisation): patient centred model of care IDFA’s model of care is directed at the national PID community. It has 6 focus areas and refers to 3 cohorts of patients. The patient centred model of care changes to reflect the needs of each cohort (child, adolescent and adult). 1. Patient Needs 2. Patient Advocacy 1. Child 3. Patient/Carer Individual commitment 2. Adolescent 3. Adult 4. Organisational (IDFA) commitment 5. Patient Outcomes 6. PID Community

Example of IDFA’s model of care: Choice of Immunoglobulin replacement therapy for adults The majority of PIDs require immunoglobulin Other methods of treatment (Ig) replacement therapy. Currently the include: treatment methods are:  Haematopoietic Stem Cell  Intravenous Immunoglobulin therapy (IVIg) Transplantation (HSCT) in hospital  Prophylactic antibiotics  Subcutaneous immunoglobulin therapy  Immunosuppressants (SCIg) – available globally for 20 years ( is a  Gamma interferon new method of treatment in Australia)  Steroids  The National Blood Authority (NBA) approved SCIg as an Ig replacement therapy in March 2013

1. Patient need - Immunoglobulin treatment methods 3. SCIg at home 1-3 1. IVIg in times a week. SCIg hospital assists in maintaining trough levels, 2. IVIg at home therefore improving – only a few patient health and patients in reducing infections Australia and hospitalisation. IDFA endorses patient choice of treatment in consultation with their Immunologist. Question: If you had the choice to have your treatment at home …….... would you? Images with permission from Noelene Davies, Transfusion Nurse, ARCBS presented at IDFA 2013 National Conference .

2. Patient Advocacy – Immunoglobulin treatment options - SCIg Advocacy/ Opportunities Patient choice - access to SCIg and IVIg Treatment options: Patient choice for treatments at home hospital based or home based therapy  South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg Gap/need: Hospital must have an and home IVIg. Patients, once trained pick up their Ig and immunologist, administer it at home Ig Clinical practice  This consultant also trains other nurses e.g. Melbourne has a consultant or Ig Centre nurse 2.5 days per week to train and monitor patients at the to train patients/carers Royal Children’s Hospital, Royal Melbourne, Alfred and Monash Medical Centre and a few patients in Tasmania  At the Children’s Hospital Westmead NSW, the Immunologist trains parents

3. Patient Commitment – treatments Regardless of the treatment, the patient or parent if child under 18, must commit to the treatment regime as treatment is lifelong. IDFA has patients between the ages of 0-79.

Weekend National 4. . Organis isational l com ommitment conference is free ! IDFA cover all costs for a weekend How much will it conference includes 2 nights cost for accommodation, participant costs, membership and meals & conference dinner Members pay a $100 pp booking resources? fee IDFA pays the rest ($750 pp) Economic Inclusion process for members IDFA Member Joins IDFA I IDFA attends advocating closed for home advocating National Facebook Receives an IDFA advocating D on’t Joins IDFA for newborn Conference – treatment vs group – IDFA for SCIg screening for pays $100 hospital discussions No resource (subcutaneous PID patient F eel SCID (severe deposit - IDFA (costs are about membership pack Immunoglobulin combined pays all costs high for economic fees treatment) -free for conference hospital – immune A lone! issues – deficiency) (approximately parking fees, Centrelink, $750 person) lunch) health funds Patient Resource Membership This year, due to lack of funding, there was no national conference pack is free is free ee & we have produced only a few resources (worth $75 dollars)

4. 4. Organis isational l com ommitment Feeling alone? We will act for our members and their families Social Inclusion process for members I D on’t Receives an Introduced to Joins IDFA closed Becomes part Attends Contacted Attends IDFA a buddy or PID Facebook group of the PID National Joins IDFA by IDFA social F eel resource mentor if patient & participates in community Conference staff outings pack needed teleconferences A lone!  Our members are currently participating in 2 clinical trials.

4. Organisational commitment – Global information Patients are interested in national and global research and events. IDFA is associated with:  IDF (US)  IDFNZ  IPOPI - Executive Officer is Treasurer of IPOPI.

5. Patient Outcomes Immunoglobulin (IVIg or SCIg), hospital or home based, should be the considered choice of the patient. Resources

6. Patient Community IDFA = I D on’t F eel Alone! inspiring young adults buddies national conference mentors families social get-togethers

Australian IDFA patient centred model of care IDFA’s model of care could represent any rare disease patient organisation model of care . The following patient needs within the PID community and suggestions for narrowing the gaps could refer to any rare disease patient organisation. 1 . Patient Needs 2. Patient Advocacy 3. Patient/Carer Individual commitment 4. Organisational commitment 5. Patient Outcomes 6. Rare Disease Community