Luigi Croce: The Quality of Life Outcome Measure in a Group of Italian Children with ID - Slide presentation

Iniziativa approvata e co-finanziata Ministero Lavoro e Politiche Sociali ex

legge 383/2000, art. 12, lett. f bando 2013 1

The Quality of Life outcome measure in a group of

Italian children with IDD Luigi Croce1, Marco Lombardi1,2, Claudia Claes2, Stijn

Vandevelde3 1 Università Cattolica del Sacro Cuore, Italy

2 HoGent University, Belgium3 Gent University, Belgium

1. Is it possible to profile actual supports through a validation process in order to connect support to QoL?

2. Is it possible to classify supports into classes/categories/ICF components/SIS areas, in order to define specific support indipendent variables to be challenged with dependent variables, QoL outcomes?

3. Do we have a systematic, operational, day by day process called ISP, to:

a. Manage an evidence based support provisionb. Collect data of process variables to learn from clinical

practice (single case data)c. Understand impacts of support classes on QoL

outcomes (aggregated data)

Some crucial questions

3

Looking for inspiration…

Referral and Taking in Responsibility

AssessmentDesires and Expectation

s

Personal characteristi

cs

IQ & AB Functioning Assessment & Classification

Health Assessment (medical & nursing)

Environmental

AssessmentIiving setting

Support Needs

SIS

Current QoL

POS

Functioning Profile Strenghts & Limitations +/-

Project

Ecological Balance

General Life Aim/Target

Support Objectives

Supports Interventions Plan Programs

OutcomesPersonal (POS) Functional Clinical

Project Synthesis

Case Conceptualization& Framing

Report

Report

Report

Report

INPUT

THROUGHPUT

OUTPUT

EcologicalMatrix

Matrice dei Sostegni

SupportMatrix

From Schalock, 2012, Gardner, 2009, modified

LIFE DESIGN

Correlations:

Claes 2011; Croce, Lombardi 2013 preentation08/09/13 5

Matrices…



7

1.Extractrelevant information for the domain

2.Classify information by domain

3.Integrate information domain by domain

Define Support Objectives

Support Matrix: classify and manage supports to increase Functioning and QoL (THROUGHPUT)

Classificare i sostegni

Classified Supports:① Support provider② Support activity③ Support strategy④ Places and times⑤ Lenght of time⑥ Costs⑦ Category (Schalock, ICF, SIS criteria…)

Support Manager functions

Provide a support profile by domain

Evaluate impacts on QoL profile

Scha

lock

’s c

ateg

orie

s

ICF

com

pone

nts

SIS

need

s of

sup

port

Sup

port

are

as

Case Manager’s Desktop



La relazione comunicazione

Fornitore/Fonte di sostegno

Agenzia, Persona, Ente…

Attività/strategia di sostegno

Attività, risorse, strategie, interventi…che mirano a promuovere lo sviluppo, l’educazione, gli interessi e il benessere biopsicosociale r a migliorare il funzionamento individuale

Tempi/orari/durata Frequenza, durata, collocazione temporale della fornitura di sostegno

Luogo Spazio, ambiente, luogo in cui viene forni to sostegno diretto o indiretto alla Persona/Famiglia/ Comunità

Scopo/fine/obiettivo Risultato, esito in termini personali (QdV), funzionali e clinici perseguiti dal sostegno fornito

Categoria di sostegno Elementi e componenti di un sistema di sostegni (Schalock, 2014)

Componente ICF del sostegno

ICF Funzioni, Attività e Partecipazioni, Fattori Ambientali

Costi Nomenclatore, Budget, Vaucher, Tariffe. Onorari…

Helping

Negotiating/ Interfacing

Time planning and management

Connecting

Budget/Cost Control

Support Classification

Future Forecasting

Case Management’s Pathways



Ecological Matrix

Actual Supports

Integrated Support MatrixS

uppo

rt O

bjec

tives

Support Validation/

re-alignment

Georeferenced Map

Weekly Agenda

Planned Supports

Costs/benefits

Qua

lity

of L

ife

Referral Outcomes

Ass

essm

ent

Fornitore/Fonte di sostegno

Agenzia, Persona, Ente…

Attività/strategia di sostegno

Attività, risorse, strategie, interventi…che mirano a promuovere lo sviluppo, l’educazione, gli interessi e il benessere biopsicosociale r a migliorare il funzionamento individuale

Tempi/orari/durata Frequenza, durata, collocazione temporale della fornitura di sostegno

Luogo Spazio, ambiente, luogo in cui viene forni to sostegno diretto o indiretto alla Persona/Famiglia/ Comunità

Scopo/fine/obiettivo Risultato, esito in termini personali (QdV), funzionali e clinici perseguiti dal sostegno fornito

Categoria di sostegno Elementi e componenti di un sistema di sostegni (Schalock, 2014)

Componente ICF del sostegno

ICF Funzioni, Attività e Partecipazioni, Fattori Ambientali

Costi Nomenclatore, Budget, Vaucher, Tariffe. Onorari…

Support Classes

Support parameters: classifying supports

11

Support Provider Agency, Person, Professional, …

Support Activities Support Strategies

Activities, resources, strategies, interventions, therapiea, treatments directed to promote development, education, interests, biopsychosocial wellbeing and increase individual functioning

Times Duration, Frequency, Daily Support TimeAgenda

Locations Spaces, environments, places where suppotrts are directly or indirectly provided to Persons/Families/Community

Objective/Target Risultato, esito in termini personali (QdV), funzionali e clinici perseguiti dal sostegno fornito

Support Categories Elements and Components of a System of Supports (Schalock, 2014)

ICF component references ICF Functions, Activities and Participations, Environmental Factors

Costs Nomenclatore, Budget, Vaucher, Price-list. Fees…

Classifying actual ongoing Supports



Validation process:

Which domain/s is/are this/these support/a pusuing?

Supports Profile before Ecological Matrix



Ecological Matrix



Defining Support Objectives



Support Matrix by Support Category

Support Matrix by Support Provider

Support Matrix by Support Provider

Support Matrix by specific Support

Support Matrix by Domain

Inputting a new Support



Pre-Supports/Supports after Matrices





Ingredients are not enough…

Support Recombination after Matrices

Croce & Lombardi, Data in publishing 25

SI_Classe1 SI_Classe2 SI_Classe3 SI_Classe4 SI_Classe5 SI_Classe6 SI_Classe7 SI_Classe8 SI_Classe9 SI_Classe10 SI_Classe110.00

0.50

1.00

1.50

2.00

2.50

3.00

Confronto tra le classi di sostegno T0 vs T1

Media T0 Media T1

By support Categories…


26

SI_D_BE SI_D_SP SI_D_RI SI_D_IS SI_D_AD SI_D_BF SI_D_DE SI_D_BM0.00

0.50

1.00

1.50

2.00

2.50

3.00

3.50

4.00

4.50

5.00

0.57

3.57

1.49

0.59

0.30

1.37

0.080.22

1.91

4.43

2.26

1.27

0.93

1.95

0.34 0.39

Confronto Sostegni per dominio di QdV T0 vsT1

Media T0 Media T1

By QoL Domains …

Croce & Lombardi, Data in publishing




SI_D_BE

SI_D_BF

SI_D_BM

SI_D_RI

SI_D_IS

SI_D_AD

SI_D_DE

SI_D_SP

0.00

5.00Confronto tra sostegni erogati T0 vs T1

Media T0 Media T1

Croce & Lombardi, Data in publishing

Conclusion: why Matrices might be a good framework to align specific components of supports to a QoL oriented ISP

1. Because it reflects analitycally the INPUT/THROUGHPUT/OUTPUT process and generates managed complexity instead of confusing cahos

2. Because it is real: that means it is useful at everyday practice level providing a rational pathway to ISP development from assessment to outcomes

3. Because it connects systematically independent variables (personal, functional, clinical, supports…) to dependent variables (outcomes)

4. Becouse through a systematic and clinical data collection it makes every single case an asset of information for research purposes: clinical practice and research are produced at the same time

Conclusions

From the initial cahos …

Towards a manged complexityLuigi [email protected] [email protected]

mailto:[email protected]



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Luigi Croce: The Quality of Life Outcome Measure in a Group of Italian Children with ID - Slide presentation