Innovative Patient-CentredApproach for Social Care Provision to Complex Conditions Social and economic impact of a case management approach for people with rare and complex conditions in Salaj, Romania Vibeke Sparring, PhD Karolinska Institutet International Conference on Integrated Care 23-25 May 2018, Utrecht, Netherlands www.innovcare.eu www.creenfermedadesraras.es | www.cjsj.ro | www.apwromania.ro | www.eurordis.org | www.finovatis.com | www.ier.si | www.ki.se | www.zsi.at This project is co-funded by the European Union . The information contained in this publication does not necessarily reflect the official position of the European Commission
www.innovcare.eu Impact of rare and complex conditions 67% 30% 38% 65% of people living with of people living with of caregivers for of patients and a rare disease and people living with a caregivers were a rare disease have to visit different caregivers say that rare disease spend absent from work health, social and different services more than 6h per due to health- local support communicate badly day on health- related issues for services in a short between them* related tasks* over 30 days in the last 12 months* space of time* * Survey conducted via Rare Barometer Voices in the scope of the INNOVCare project. International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu INNOVCare pilot in short • To bridge the gaps in coordination between health, social and local services • To reduce care burden for patients and families • Time frame: 18 months (01/2017-06/2018) • Target population: • Patients with rare/complex conditions (children and adults) and their families; • Current beneficiaries of NoRo and new ones • 120 cases (each case includes patient + family) • Each case has access to the service for 9 months • Region of Salaj, Romania • Four case managers employed by NoRo (resource centre) • Profile of case managers: social worker and lawyer • Max 30 simultaneous “cases” per case manager • Service provision should be focused on a few key areas in order to have more meaningful results International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu The INNOVCare evaluation design A basic two-condition repeated-measures design /rotation design M M M Measurement Measurement o treatment Measurement reatment Measurement Measurement Measurement reatment o treatment M M M International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu Methods Questionnaires to patients and caregivers Social impact Economic impact WP7 WP8 Costs for the care model 1. Information about disease Costs for and impact on patients 2. Information about rights as a patient and caregivers, e.g. Health care utilisation (different levels 3. Self-management of care of care) 4. Better communication skills Use of prescription medication 5. Knowledge of available Health care insurance and cost- services sharing Health and general well-being 6. Disease-related peer-to-peer Information about caregivers learning Impact on caregivers 7. Understanding and acceptance in community 8. Coordination of care among stakeholders International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
Participants’ profiles Percentage 10 20 30 40 50 60 n=65 0 Degree of disability No disability n=120 deficiency functional assistant) personal (without Severe n=55 deficiency functional Marked deficiency functional Moderate Frequency 10 12 14 16 18 20 0 2 4 6 8 Disease: Undiagnosed (with personal Unknown deficiency functional assistant) Severe ADHD Anaemia Autistic disorders Percentage Autistism & epilepsy 10 15 20 25 30 0 5 Downs syndrome Age groups: Epidermolysis bullosa up to 3 Epilepsy Kidney disease 4 to 7 Mastocytosis 8 to 17 Multiple sclerosis Muscular dystrophies 18 to 24 Myasthenia gravis Myeloma 25 to 34 Neuropathies www.innovcare.eu Pervasive development 35 to 44 Perv. Dev. & ADHD Prader Willi 45 to 54 Ring chromosome 18 Tetraparesis 55 to 64 West Syndrome 65+ Myopathy
www.innovcare.eu Preliminary results : Patients’ HRQoL measured by EQ-5D-Y 100% 90% 84% 80% 76% 76% 74% 71% 70% 69% 68% 68% 70% 67% 67% 64% 64% 61% 61% 60% 60% 59% 57% 60% 56% 50% 40% 30% 20% 10% 0% 1st cohort (t1) 1st cohort (t2) 2nd cohort (t1) 2nd cohort (t2) Mobility Self-care Usual activities Pain/discomfort Anxiety/depression Mean EQ VAS score 49.3 vs 58.9 (1 st cohort) and 57.0 vs 68.0 (2 nd cohort) International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu Preliminary results : Caregivers’ HRQoL measured by EQ-5D-5L 100% 90% 80% 70% 60% 51% 50% 45% 44% 40% 38% 38% 37% 36% 40% 28% 30% 24% 22% 16% 20% 11% 11% 10% 9% 8% 6% 6% 10% 4% 0% 1st cohort (t1) 1st cohort (t2) 2nd cohort (t1) 2nd cohort (t2) Mobility Self-care Usual activities Pain/discomfort Anxiety/depression Mean EQ VAS score 75.6 vs 83.5 (1 st cohort) and 72.6 vs 81.2 (2 nd cohort) International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu Preliminary results: Caregiver burden measured by Zarit Caregiver Burden Interview 100% 90% 80% 70% 60% 55% 50% 42% 42% 42% 40% 40% 40% 35% 29% 26% 30% 18% 16% 16% 20% 10% 0% 1st cohort (T1) 1st cohort (T2) 2nd cohort (T1) 2nd cohort (T2) No burden Mild to moderate burden High burden Mean ZBI score 13.4 vs 12.3 (1 st cohort) and 12.9 vs 12.0 (2 nd cohort) International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu Preliminary results: 8 goals of the intervention 4 4 point Likert scale: 0 ‘not at all’ 4 ‘very well’ 3 2 T1 - 1st cohort T1 - 2nd cohort T2 - 1st cohort T2 - 2nd cohort 1 0 ^ ^ ^ ^ Acceptance in ^ ^ Peer-to-peer the community learning Information Information Communication Information Coordination of Self- about disease about rights skills about services care management of n=52 care International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
www.innovcare.eu In summary… Intervention successful in terms of social impact e.g. patients are more empowered and informed, have higher self-confidence. No real impact on health-related quality of life among patients or caregivers but a positive impact on the reduction in caregiver burden Significant improvement in 6 of the 8 related dimensions covered by the intervention International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands
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