Results

The process

User needs and requirements is a process that starts in WP2, at the very beginning of PROCare4Life project (M1) and whose work will continue throughout pilots and in other deliverables from different WPs.

In the first phase, fieldwork was carried out with patients, carers, healthcare professionals and other stakeholders, through interviews, workshops and online questionnaires.

Patients’ online survey/interview results summary

What is it like for you to have this disease?

“It is like in the ‘Endless Story’, when ‘Nothing’ takes over ‘Fantasy’ little by little, and you cannot do anything about it...”

“I feel a bit like.. ’Unintelligible’ ”

“I know how to do things mentally, but physically I can't”

Online surveys

The responses of a total of 85 patients was collected in this survey, 47 of them male (55%) and 38 female (45%). Mainly, 61 (72%) with PD’s, followed by 20 people with other dementia (23%) and 4 people with AD (5%).

Most patients came mainly from Romania (32%) and Portugal (32%) followed by 14 individuals (17%) from Spain, 13 from Italy (15%) and 3 from Germany (4%).

The average age of the participants was between 65 and 75 years old (53%) followed by people aged between 76 and 85 years old (41%) and over 85 (6%) being their highest level of education primary school (27%) and post-secondary school (25%) studies.

Most of the participants were diagnosed in the last 5 years (33%) followed by those diagnosed 6 to 10 years ago (22%) and half of them (51%) had another diagnosis (mainly, cardiovascular diseases and diabetes). Around 61% of participants were married and received help from informal caregivers (63%). More than 95% lived at their homes, with a partner or spouse (64%) and reported that they have medium income (67%).

Symptoms

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    Caregivers’ online survey/interview results summary

    Online surveys

    The responses of a total of 85 patients was collected in this survey, 47 of them male (55%) and 38 female (45%). Mainly, 61 (72%) with PD’s, followed by 20 people with other dementia (23%) and 4 people with AD (5%).

    Most patients came mainly from Romania (32%) and Portugal (32%) followed by 14 individuals (17%) from Spain, 13 from Italy (15%) and 3 from Germany (4%).

    The average age of the participants was between 65 and 75 years old (53%) followed by people aged between 76 and 85 years old (41%) and over 85 (6%) being their highest level of education primary school (27%) and post-secondary school (25%) studies.

    Most of the participants were diagnosed in the last 5 years (33%) followed by those diagnosed 6 to 10 years ago (22%) and half of them (51%) had another diagnosis (mainly, cardiovascular diseases and diabetes). Around 61% of participants were married and received help from informal caregivers (63%). More than 95% lived at their homes, with a partner or spouse (64%) and reported that they have medium income (67%).

    Symptoms