AGE Platform Europe Barometer, comparing care support throughout Europe Research conducted in selected regions of England, Germany, Poland and Italy Anne-Sophie Parent AGE Platform Europe
PURPOSE Provide an understanding of how different provision systems influence the patient s experience with containment products* How can the provision be optimally designed to support patients, carers and the health system in the best possible way? * Containment products defined as different types of product designs.
Methodology & sample Method: interview on-line** with caregiving relative and user or caregiving relative only June Nov 2017 Sample: Partly dependent people with incontinence, >65 years, sometimes / occasionally in need to support with continence management. * Italy regions: Campania, Emilia Romagna, Lazio ** Poland: part of recruitment process face to face, before online survey *
Different provision systems TAX BASED England TAX BASED Poland TAX BASED Italy INSURANCE BASED Germany (110 Health Insurers) Limited range of product types set and provided by NHS/CCGs Free at point of service Recommendation by district nurse Product delivered to place of residence Defined max financial limit per patient per month Max quantity of products per person per month provided by NHS Obligatory co-payment Voluntary payment (topup) possible /needed Recommendation product type mainly by pharmacy Products provided by NHS (regional decision on product types and quantity) Free at point of service Supplier nurse recommendation with home delivery Lump sum per person per month per health insurer Freedom of choice to select product. Obligatory prescription fee Voluntary payment (topup) possible/needed Information collected by themselves or recommendation by a HCP (usually provider)
Provisions are suboptimal 1 2 3 4 Not enough support for independence, especially night time support needs urgent attention! Patients are part of the decision in most cases, in England still room for improvement Majority has very limited knowledge on product types, which hampers informed decision making and influences quality of life! Sufficiency of the provision in many cases an issue. Better match between needs and provision to be made!
REGRESSION ANALYSIS (based on all provisions) Main themes supporting quality of life Support for independence night Decision making process who mainly decides on pad design? Sufficiency of provision Payment for incontinence products yourself * Support for independence day Familiarity with pad designs how many different designs do they know? Payment for incontinence products NHS Disturbance during sleep does the pad disturb their sleep? Base: 600 1 2 3 4 5 SUPPORT FOR INDEPENDENCE DECISION MAKING PRODUCT MATCH PRODUCT PAYMENT PRODUCT KNOWLEDGE *defined as paying 70-99% of product cost themselves
How good is the support for independence? Overall, to what extent does the current pad design support your ability to manage your incontinence during the night? 20 24 18 49 27 33 34 39 32 31 33 16 6 15 15 3 1 4 53 47 58 42 45 55 81 19 Base: Those who use pads during night Italy n=95, DE n=280, EN n=93, PL n=79 Very good support Poor support Top 2 boxes Bottom 3 boxes
Are people participating in the decision making process? Who mainly decides / has decided which product design should be used? 90 (I as the user decide; My caregiving relative and I decide together; My caregiving relative decides) Statistically significantly less people with incontinence in England are involved in a decision making process than in other three surveyed countries. 85 62 94 Base: 100 per provision; 300 in DE
How good is the product type knowledge? 35% 42% 48% 46% 52% 58% 65% ITALY GERMANY 1-2 product types ENGLAND 54% POLAND More than 2 types Base: 100 per provision; 300 in DE
How sufficient is the provision? Overall, to what extent is the current provision of pad design by health and social care services sufficient? 9 12 10 14 27 26 30 18 32 35 37 35 17 29 3 17 10 21 2 16 36 64 38 62 40 60 32 68 Base: 100 per provision; 300 in DE Very sufficient Sufficient Either Insufficient Not sufficient at all Top 2 boxes Bottom 3 boxes
SINGLE CHOICE QUESTION Suggested areas of improvement Thinking about areas relating to incontinence pads, what can health & social care services improve to provide you with better support? Better match to be made within the existing provision, between my needs and product Free choice to select pad designs meeting my needs Better information about pad designs to be made available Higher budget per person needed to acquire the right product design 33% 26% 20% 17% 27% 30% 20% 25% 17% 27% 29% 20% 34% 18% 18% 34% Base: IT, EN, PL 100 per provision; DE 300 per provision
Principles of provisions..today Provisions to manage incontinence with containment products are often rationed by: Eligibility criteria, cap on personal budgets, inadequate lump sums, n of pcs per person/time Limited product type choice Limited information on product types This leads to inefficiencies in the way available resources are used from the perspective of patients, carers and health systems
Principles of adequate provisions..tomorrow New approaches are needed to adapt provision to today s needs and reach optimal use of available resources Ensure patients involvement and empowerment in the decision process Promote freedom of choice from a wider assortment and facilitate access to information to secure a better match between needs and provision, allowing for more than one product type used: Day and night usage Indoor, outdoor activities Activity related to travel, work, socializing, etc.
Local level: develop continencefriendly urban policies and care provision Policy recommendations in support of Independent living National level: Ensure access to affordable quality continence care adapted to the needs of today s older adults, including the very old and frail living at home EU/UN level: Include good continence care for all in work priorities to be implemented under SDG#3 on Health