Social and economic impact of a case management approach for people - - PowerPoint PPT Presentation

This project is co-funded by the European Union

.

Innovative Patient-CentredApproach for Social Care Provision to Complex Conditions

www.creenfermedadesraras.es | www.cjsj.ro | www.apwromania.ro | www.eurordis.org | www.finovatis.com | www.ier.si | www.ki.se | www.zsi.at

The information contained in this publication does not necessarily reflect the official position of the European Commission

International Conference on Integrated Care 23-25 May 2018, Utrecht, Netherlands

Vibeke Sparring, PhD Karolinska Institutet www.innovcare.eu

Social and economic impact of a case management approach for people with rare and complex conditions in Salaj, Romania

www.innovcare.eu

Impact of rare and complex conditions

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

65%

• f people living with

a rare disease have to visit different health, social and local support services in a short space of time*

67%

• f people living with

a rare disease and caregivers say that different services communicate badly between them*

30%

• f caregivers for

people living with a rare disease spend more than 6h per day on health- related tasks*

38%

• f patients and

caregivers were absent from work due to health- related issues for

• ver 30 days in the

last 12 months* *Survey conducted via Rare Barometer Voices in the scope of the INNOVCare project.

www.innovcare.eu

INNOVCare pilot in short

• 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
• rder to have more meaningful results

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

• To bridge the gaps in coordination between health, social and local services
• To reduce care burden for patients and families

www.innovcare.eu

The INNOVCare evaluation design

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

Measurement reatment Measurement Measurement

• treatment

Measurement

• treatment

Measurement Measurement reatment M M M M M M

A basic two-condition repeated-measures design /rotation design

www.innovcare.eu

Methods

Questionnaires to patients and caregivers

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

• Social impact
• 1. Information about disease
• 2. Information about rights as a

patient

• 3. Self-management of care
• 4. Better communication skills
• 5. Knowledge of available

services

• 6. Disease-related peer-to-peer

learning

• 7. Understanding and acceptance

in community

• 8. Coordination of care among

stakeholders

• Economic impact
• Costs for the care model
• Costs for and impact on patients

and caregivers, e.g.

• Health care utilisation (different levels
• f care)
• Use of prescription medication
• Health care insurance and cost-

sharing

• Health and general well-being
• Information about caregivers
• Impact on caregivers

WP7 WP8

www.innovcare.eu

Participants’ profiles

n=120 n=65 n=55

5 10 15 20 25 30 up to 3 4 to 7 8 to 17 18 to 24 25 to 34 35 to 44 45 to 54 55 to 64 65+ Percentage

Age groups:

10 20 30 40 50 60 No disability Severe functional deficiency (without personal assistant) Marked functional deficiency Moderate functional deficiency Severe functional deficiency (with personal assistant) Percentage

Degree of disability Disease:

2 4 6 8 10 12 14 16 18 20 Undiagnosed Unknown ADHD Anaemia Autistic disorders Autistism & epilepsy Downs syndrome Epidermolysis bullosa Epilepsy Kidney disease Mastocytosis Multiple sclerosis Muscular dystrophies Myasthenia gravis Myeloma Neuropathies Pervasive development

• Perv. Dev. & ADHD

Prader Willi Ring chromosome 18 Tetraparesis West Syndrome Myopathy Frequency

www.innovcare.eu

Preliminary results: Patients’ HRQoL measured by EQ-5D-Y

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

Mean EQ VAS score 49.3 vs 58.9 (1st cohort) and 57.0 vs 68.0 (2nd cohort)

67% 76% 71% 69% 60% 60% 61% 59% 56% 68% 61% 74% 76% 84% 64% 67% 64% 68% 57% 70%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 1st cohort (t1) 1st cohort (t2) 2nd cohort (t1) 2nd cohort (t2) Mobility Self-care Usual activities Pain/discomfort Anxiety/depression

www.innovcare.eu

Preliminary results: Caregivers’ HRQoL measured by EQ-5D-5L

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

Mean EQ VAS score 75.6 vs 83.5 (1st cohort) and 72.6 vs 81.2 (2nd cohort)

11% 11% 24% 16% 4% 6% 8% 6% 22% 9% 28% 10% 44% 38% 45% 36% 38% 51% 37% 40% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 1st cohort (t1) 1st cohort (t2) 2nd cohort (t1) 2nd cohort (t2) Mobility Self-care Usual activities Pain/discomfort Anxiety/depression

www.innovcare.eu

Preliminary results: Caregiver burden measured by Zarit Caregiver Burden Interview

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands

40% 42% 29% 40% 35% 42% 55% 42% 26% 16% 16% 18% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 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 (1st cohort) and 12.9 vs 12.0 (2nd cohort)

www.innovcare.eu

Preliminary results: 8 goals of the intervention

International Conference on Integrated Care, 23-25 May 2018, Utrecht, Netherlands 1 2 3 4 ^ ^ ^ ^ Acceptance in the community ^ ^ Peer-to-peer learning Information about disease Information about rights Communication skills Information about services Coordination of care Self- management of care

4 point Likert scale: 0 ‘not at all’ 4 ‘very well’

T1 - 1st cohort T1 - 2nd cohort T2 - 1st cohort T2 - 2nd cohort

n=52

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