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

    • Stiffness (74%)
    • Feeling sad (67%)
    • Feeling anxious or nervous (64%)
    • Gait problems (62%)
    • Loss of balance (62%)
    • Pain (56%)
    • Sleeping problems (55%)
    • Difficulties in concentration (54%)
    • Difficulties to communicate with others (54%)
    • Involuntary movements (51%)
    • Stiffness (32%)
    • Loss of balance (31%)
    • Gait problems (28%)
    • Involuntary movements (22%)
    • Stumbles and falls (22%)
    • Feeling anxious or nervous (21%)
    • Urinary incontinence (21%)
    • Pain (19%)
    • Feeling sad (19%)
    • Constipation (16%)
    • Vision problems (16%)
    • Stiffness (74%)
    • Feeling sad (67%)
    • Feeling anxious or nervous (64%)
    • Gait problems (62%)
    • Loss of balance (62%)
    • Pain (56%)
    • Sleeping problems (55%)
    • Difficulties in concentration (54%)
    • Difficulties to communicate with others (54%)
    • Involuntary movements (51%)
    • Dressing and undressing (54%)
    • Doing housework (53%)
    • Moving out of the house (52%)
    • Participating in leisure activities (52%)
    • Dressing and undressing (54%)
    • Doing housework (53%)
    • Moving out of the house (52%)
    • Participating in leisure activities (52%)

    Technology usage

    Regarding tools used ‘often (5-7 days/week) by them, we find the following results:

    Smart phone

    0%

    Smart TV

    0%

    WhatsApp and similar apps (33%)

    0%

    Computer

    0%

    Electronic mail

    0%

    Tablet

    0%

    E-health apps

    0%

    Smart watches

    0%

    Video games

    0%

    Technology acceptance

    In order to receive a better care and treatments, we find the following results:

    • Stationary devices (36%)
    • Wearable devices (35%)
    • Mobile/tablet app (32%)
    • Smart TV (29%)
    • Website (27%)
    • Cameras (27%)

    Functionalities

    • Detect adverse events (36%)
    • Monitor activities and symptoms (36%)
    • Info about physiological status (35%)
    • Info/training about disease (33%)
    • Communication with socio-health professionals (32%)
    • Links to leisure activities (59%)
    • Links to local support services (46%)
    • Social networking (40%)
    • Organize appointments and reminders (33%)
    • Explanation service for medication, terminology (27%)

    Desired features

    All the proposed features were seen very important or important by the participants, giving preference to the following ones:

    Adapted to their skills

    0%

    Real time information

    0%

    Easy to set up

    0%

    Comfortable to wear

    0%

    Functionalities organized

    0%

    Interviews

    From 30/06/2020 until 21/07/2020 the opinions of a total of 5 patients were collected through interviews.

    As regards nationalities, 2 of those interviewed were Spanish, 1 German, 1 Italian and 1 Portuguese, with an average age between 76 and 85 years old.

    In terms of gender, we got a very even sample of 3 male and 2 female participants with different household incomes (high, medium and low represented). Regarding academic education, 2 of them had Master degree studies, 1 secondary school, 1 primary school and 1 person has no formal education.

    3 of interviewees had a main diagnose of Parkinson’s disease, while 1 had Alzheimer’s and 1 dementia. Mostly, 3 of interviewees had a recent diagnostic followed by 1 being diagnosed between 6-10 years ago and 1 between 11-15 years ago. Osteoporosis and cardiovascular disorders were other diseases mentioned by the patients.

    5 of participants confirmed living at home with their spouse/partners, having 4 of them an informal carer; 1 a formal carer and a 1 no needed a caregiver.

    Experience of illness and changes in life

    • During the interviews, patients told us that they struggle to live with symptoms that make them feel vulnerable. This make them stop doing many activities, which they say leads them to lose confidence in themselves and sometimes even their own identity, generating feelings of anger, apathy and isolation.

    Most troublesome symptoms and management

    • Loss of memory, behaviour changes, communication difficulties or depression would be some of the most troublesome symptoms. But there are many more: difficulties for multitasking, stiffness, dizziness, lack of motivation, feeling anxious and uncertain about the future, would be some other barriers in their daily life.

    Barriers and ideas for daily activities and care process

    • In their daily activities their main support was coming from their families and also professional support like outpatient nursing services. Regarding care services received, those included public and private health specialists: neurologists, osteopaths, urologists, opticians, and nurse staff.
    • In general, there are not many complaints about those care services mentioned above, although they agreed in the need to be funded more, for professionals not to have to care for so many patients and for patients to adapt to new situations.

    Goals to achieve and changed preferences

    • When we asked patients about their goals or preferences, we were told that the disease had not changed them. It had simply made it impossible to achieve or continue to perform some. Enjoying holidays with their partners, seeing their family and friends, going back home, were still some of them.
    • They wanted the illness to be only a circumstance controlled with the right medication through a good communication with their doctors. And their bigger wish to maintain their autonomy, to keep doing what they used to do including leisure activities like singing, dancing or going around.

    Opinion and feelings about technology

    • Some patients have already used messages or emails to communicate with their care teams and deal with appointments. Some others suggested that they would be interested in tools to monitor their health status, to control medication better and to remind them of things. Also to continue their lifestyle activities sometimes interrupted due to physical barriers or memory problems.
    • Patients reported to prefer in person communication, but also willing to use mobiles or computers. The general opinion being that technology is a good measure which allows bringing services closer which they were able to verify during the confinement of the Covid when some of them were using tools (e.g. video calls through tablets) for doctors and social interactions.

    What is it like for you to be a caregiver?

     “Being a caregiver is dealing with a lot of moods...”

    “Difficult, having to unlearn my old ways of looking at her former self, having to unlearn telling her stuff I used to say”

    “You get freedom through support”

    • Their main concern regarding technology was their lack of knowledge, how complicated some of them apparently are, and issues regarding not being able to afford them or doubts about data security.

    Caregivers’ online survey / interview results summary

    From 26/06/2020 until 28/07/2020 the responses of a total of 5 caregivers were collected through interviews.

    As regards nationalities we had from Germany, Italy, Portugal, Romania and Spain.

    In terms of gender, we got a very even sample of 3 female and 2 male participants with different household incomes (high, medium and low). Regarding academic education, 3 of them had secondary school studies, 1 post-secondary school and 1 person had Master degree’s education.

    3 of the interviewees were informal caregivers (spouses/partners) while 2 were formal carers of the person of interest.

    In 2 cases the primary diagnosis of the person being cared was Parkinson’s disease, in other 2 cases it was dementia, and there was another interviewee that was taking care of someone with Alzheimer’s’. In most of the cases, 4 of them, the average time they had been caring for the person was between 1-5 years.

    Symptoms of most concern

    • Stiffness (82%)
    • Loss of balance (81%)
    • Stumble and falls (71%)
    • Feeling anxious or nervous (68%)
    • Gait problems (67%)
    • Feeling sad (65%)
    • Difficulties to communicate with others (64%)
    • Difficulties in remembering things to do (62%)
    • Difficulties in concentration (61%)
    • Confusion/disorientation (61%)
    • Pain (54%)
    • Sleeping problems (50%)
    • Vision problems (50%)
    • Stumbles and falls (44%)
    • Loss of balance (43%)
    • Stiffness (36%)
    • Gait problems (28%)
    • Feeling anxious or nervous (25%)
    • Difficulties to communicate with others (25%)
    • Pain (24%)
    • Feeling sad (24%)
    • Swallowing / chocking (24%)
    • Confusion/disorientation (24%)
    • Postural dizziness (22%)
    • Involuntary movements (20%)
    • Vision problems (19%)
    • Loss of interest (19%)
    • Difficulties in remembering things to do (19%)
    • Aggressiveness (18%)
    • Difficulties in concentration (15%)
    • Problems or arguments with close relationships (15%)
    • Stiffness
    • Loss of balance
    • Stumble and falls
    • Feeling anxious or nervous
    • Gait problems
    • Feeling sad
    • Mobility and memory problems are involved in activities of daily living that need more support from caregivers. PROCare4Life should focus on them and create services (e.g. reminders) to help compensate for these difficulties

    Technology usage

    Regarding those tools used by them, we found the following results:

    • Smart phones (83%)
    • WhatsApp (75%)
    • Electronic mail (69%)
    • Computer (65%)
    • Smart TV (43%)
    • Tablet (33%)
    • E-health apps (17%)
    • Smart watch (17%)
    • Video games (6%)

    Functionalities

    • Detect adverse events (50%)
    • Training about disease (47%)
    • Communication with socio-health professionals (40%)
    • Monitor activities and symptoms (37%)
    • Explanation service for medication, terminology (31%)
    • Links to leisure activities (35%)
    • Social networking (26%)
    • Organize appointments and reminders (21%)
    • Links to local support services (17%)
    • Info about physiological status (17%)
    • Personalized therapies and recommendations (17%)

    Desired features

    Easy to use

    0%

    Easy to set up

    0%

    Real time information

    0%

    Comfortable to wear

    0%

    Experience of being a carer

    • Caring for patients with AD or PD is always accompanied with worries and sacrifices. It is a complicated process with a lot of emotional and logistic burden. Informal caregivers find it difficult as they have to deal with a new person not the same one they used to know before the disease. Therefore, they have to learn new ways of communication and pay attention to every detail about the person they care for. Caregivers might develop the feelings of fear of having the same disease one day; at the same time caregiving makes them value life more and appreciate the life they have.

    Most troublesome symptoms and management

    • During caring, memory problems and its consequences like accidents, forgetting medications, and misunderstandings. Communication problems. Social isolation. Eating problems. Falls.
    • Formal caregivers sometimes find it difficult to be always available for patients when they need someone to talk to, considering their limited time.

    Assisting patients in daily life activities

    • In general, caring for someone with AD or PD means doing a lot of things for them, which is too much and causes many difficulties for caregivers.
    • Caregivers suffer from patients´ mobility problems. Communication problems due to the behaviour changes associated with the disease. Memory problems which mean carers pay more attention to the alerts and reminders.
    • Accompanying the patient to and from physician visits especially in rural areas. For this reason, stationary activities at home or through mobile services, are easier for caregivers.

    Ideas suggested facilitating the caregivers work

    • Having regular breaks from the caring work.
    • Informal caregiver: More care funding to adapt home spaces for caring would be needed together with lift systems and family reconciliation measures such as telework, flexitime and being mobile. Consultation with doctors and learning and sharing strategies to approach certain behaviours would be of help for them.
    • Formal caregiver: Counselling involving relatives, team meetings, better wage/hour so they can spend more time with patients.
    • Having extra help from other caregivers; more technical assistance to facilitate transfers and reduce physical effort also together with reminders and alerts for the patient and leisure apps/resources for themselves to disconnect of care.

    Regarding personal goals

    • Goals change with the progression of the disease but keep the patient with the best treatments, the highest quality of life and making their own decisions (what to eat, to see on TV) would be the most important issues.
    • Also, to be able to take care of their own health as best as possible.

    Problems related to care services

    • Not much. Main problems are related to difficulties in allocating the right specialist or specialists fully booked, and the long waiting time to get health service especially in rural areas.
    • Suggested solutions: Better communication among specialists and specialists-patients.
    • To provide training for caregivers so they can handle situations better and provide a better care.

    Opinions, feelings about technology

    • Caregivers considered technology very useful to communicate with others, set up rehabilitation sessions for patients and have entertainment moments. They thought they have better chances using technology than the patients they care for, as they might struggle with it.

    Reasons to trigger its use

    • There is an opportunity to try them.
    • There is a reason to use them, if they facilitate the caregivers’ activities, like learning interesting and useful information. Also, for social purposes.
    • Affordable applications to help to get around with the patients (especially those wheelchair users), to manage patients’ medication (e.g. Duodopa states), to chat with others and find solutions together.
    • It saves time in carrying out tasks.

    • Older adults are a heterogeneous group with different needs, which means nothing fits all
    • PROCare4Life technology intervention has to be personalized and designed based on every person specific needs and requirements
    • Providing a simple, affordable and easy to handle technological intervention, can guarantee a better acceptance among older adults with neurodegenerative disease and their caregivers
    • High lightening the benefits of the system and covering all the concerns of the users (especially regarding the data security), are important to convince the users how helpful PROCare4Life would be for them.

    Health and care professionals / workshops results summary

    Between 28/07/20 and 26/08/20, 4 workshops were held in Germany, Spain, Italy and Portugal. They were attended by 20 health and care professionals in total: 5 physiotherapists; 3 psychologists; 3 speech therapists; 3 nurses; 2 social workers; 2 educational trainers; 1 music therapist.

    Mostly of professionals involved had more than 10 years of experience and they were between 31 and 45 years old. According to the feminized socio sanitary sector, there were more women participants (18) than men (2).

    Technology in the daily activity

    Taking into account the use in the daily activity, professionals underlined three main uses.

    1. Technological tools for internal communication to keep the team connected. Professionals consider an added value the chance to be connected with other colleagues from the same organization. This situation become really important with the pandemic situation where technology let them continues their activities.
    2. Technological tools for communication with patients by email and video calls. Taking into account the pandemic situation, video calls are an added value since let professional see the face and expressions (not allowed in a face to face communication due to mask use). Technology must be really easy to be used by patients.
    3. Clinical assessment and monitor patients. Mainly they used technology to monitor patients movement (balance, walking clinical evaluation) and for clinical assessment (apps to train voices, systems to communicate with patients by the look in their eyes, app for cognitive rehabilitation). Many of these tools made possible a biofeedback for patients and therapists.

    Professionals underlined that technology is useful as supportive for medical treatment, but it is not a replacement, being important to reinforce the relationship between patients and physician or professionals. Professionals stressed that not all patients are able to use technology, but due to Covid situation many of them used technology at home. Many of them know about technological device that can be used in their own field of expertise.

    Professional requirements in PROCare4Life

    Social and health professionals said that having a tool like the PROCare4Life platform is mandatory, as it can facilitate the daily work with patients, save time, money and efforts.

    For them it is important that this system allows them to have access to patients’ reports, treatments, updated information, type of activities they perform in their environment to personalize therapies. Patient´s social history, evaluations, information about subject´s habits, preferences and motivations, regular travels, communication with other professionals and so other events that usually happen out of the organizations and centres.

    To have a continuous feedback, remind patients’ therapies, monitoring symptoms and vital parameters is good but not enough; introducing exercises will be an added value.

    Sensors will help to see patient’s movements’ patterns (especially people with PD). For dementia patients the wearables must be very comfortable, otherwise they will remove it.

    The system should be able to inform about adverse events (falls, stumbles, choking) and provide clinical parameters to help patients to prepare their visit to neurologist. To report about socio-economic vulnerability, adherence to therapies and changes in patients’ physical, emotional and cognitive status. The purpose of all of these functionalities is to be able to make a therapeutic and social intervention adapted to patient’s needs and adjustments of treatments providing the possibility of remote therapies channel.

    Social and health professionals would like to use this system as a communication channel with patients (as in video calls), and as a communication with external agents that are out of the organizations (Social Services, neurologist). However, they recognised the challenge due to data protection and they identified as risk that patients could be obsessed with recording data.

    PROCare4Life system is more appreciated by
    social and health professionals if it allows

    • Access to patient’s information: reports, treatments, activities, habits, preferences, motivations, communication with other professionals
    • Feedback of interventions, adherence to therapies, being informed of adverse events (e.g. falls, swallowing problems), socio-economic vulnerability
    • Have information about patient’s development (e.g. passive analysis of exercises, voice), realize adjustment of treatments and remote therapies

    Other stakeholders / interviews results summary

    From 25/06/2020 until 31/07/2020 the responses of a total of 30 stakeholders from different professional areas (e.g. health sciences, social care services, human movement science and neuroscience) were collected through interviews distributed as follows:

    • 8 Market players: Buyer of technologies or services, marketers;
    • 8 Decision makers: Authority health related, policy makers and company directors;
    • 8 Academy members: Academy researchers, and professors;
    • 6 Media professionals: Journalists.

    As regards nationalities: 33, 3% of those interviewed were German and 33, 3% Portuguese, followed by 16,6 % Italian, 6,6% Spanish and 6,6% Rumanian, and one person (3.3%) from Bosnia Herzegovina.

    In terms of gender, we got a very even sample of 53,3 % male and 46,6 % female participants, whose mode level of education was PhD’s degree followed by Master Degree’s studies. The age range was between 18-75 years old.

    Results summary: All stakeholders

    • Covid-19 situation has enhanced the need for information and communication technology interventions
    • To achieve a good system, it is necessary to involve not only health departments, also social services
    • Digital solutions must include patient participation and interaction and be problem -or symptom- oriented.
    • PROCare4Life arouses curiosity between stakeholders because of its possibilities. It seems to them: interesting, necessary, worth to try it and that it adds value as a system to monitor (e.g. falls), to meet prevention, health promotion and rehabilitation needs in population.
    • Concerns regarding data security, technical implementation, cost factor and market escalation
    • Some ideas for implementation: Secure technological structures, software compability, supportive not a substitute for real interactions, use of familiar sensors, personalization of services, system promotion within healthcare professionals,
    • To compare PROCare4Life with the conventional system and balance that against some kind of cost-benefit ratio, to get some sponsors or health insurance companies to pay.

    Results summary: Media stakeholders

    • PROCare4Life should provide information in an accessible way, trying to create a community. Show the strongest aspects of the product with a positive message of hope, trust and confidence in the system
    • PROCare4Life’s target users are people with needs and its environment: families and caregivers with tech skills; Also, private hospitals, clinics, nursing homes, inpatients institutions, assisting living services, outpatient care and health care system actors
    • Media stakeholders’ recommendations:
      • Prime time spots in TV and branding campaigns in specialized communication media
      • Post, videos, photos and podcasts with certain frequency and content according to the public
      • Use of media analytic tools for frequency, contents, for media positioning
      • Document impact by interviews and surveys on individual changes rather than just counting followers

    Results summary: Academia stakeholders

    • No awareness of how many projects have materialised or its benefits
    • Technology acceptance improves if available, free of charge, simple, enjoyable, personalized (not as much related to age)
    • Need to place the topic of integrated care and patient management in social and political communication channels
    • Academia stakeholders’ recommendations: PROCare4Life to generate new research fields, to be used for acceptability and usability studies, like guidelines for other system, to be tested, discussed and evaluated periodically with stakeholders

    Results summary: Market stakeholders

    • Integrated care market growing rapidly after Covid-19
    • About 30% of total services and performances that are not supplied by hospitals, due to post-Covid 19, could be transferred into the market of integrated care
    • PROCare4Life main competitors in the market: hospital services suppliers, some start-ups and projects, telemedicine platform companies
    • PROCare4Life should try to generate demand instead of offer and contact health care providers that can prescribe it. Pricing could be based on different levels of services (from a basic platform to a multifunctional)

    Results summary: Decision Makers stakeholders

    • People’s resistance to change is the most complicated barrier to adapt this kind of solutions
    • Integration between regional and national structure and governance, and policy makers awareness on health issues needed
    • Funding from international and national funds, health companies, projects

    Self-reflections after data analysis process

    During data acquisition and data analysis, the following issues have been noticed by the research team:

    • Participants in the dataset reflected the target population that our project intended to serve in terms of all criteria (including demographics, readiness factors...)
    • Caregivers’ opinions were mainly from the informal sector (90%) and women (71%), something that reflects and confirms the real situation of care in Europe and that we should adjust our interpretation of results.
    • Over presentation of the patients diagnosed with PD, around (72%) in the surveys and (60%) in the interviews, could result in some bias in the data collected.
    • Research was implemented according to our plan, and after the adjustments made due to the Covid-19.
    • We were surprised to find a greater interest in the use of health care technologies by all target users, something perhaps, accentuated by the current situation of Covid-19 that has caused many people to already make use of this type of tools if necessary as it has been demonstrated the usefulness and the need to develop this type of tools. Even in carrying out this study.
    • In that sense, patients identify technology as something useful, which allows them to use it to increase their safety and independence[1]. They show interest in using technology, although they are less motivated by constant monitoring at home and the security of storage of information collected by the technology[2].
      • Regarding carers, they embrace the fact that technologies can ease the monitoring of people in need of care as well as possibility of interactions with other stakeholders[3].
      • As far as health care professionals is concerned, they consider that technologies reduce their workload and allow them to devote more attention to patients that require it, giving importance in the quality of human interactions[4].
    • Within digital tools in particular, we have been surprised by the lack of interest in using tablets, On the other hand neither patients nor caregivers seem very interested in social networks through the system.
      • Mobile phones and applications for these are the most widely used and the ones that generate the greatest acceptance after direct contact in face to face interactions.
      • In general, results obtained have been in line with those expected, coinciding with the user profiles carried out by the clinical partners in which their medical characteristics, main concerns, skills and ICT interests were discussed.
    • Target users’ feedback, through the answers and opinions gathered in this study, corroborate the added value of using the user-centred approach to achieve a high score in usability and increase the acceptance of the technology among users.

    [1] Van Boekel, Wouters, Grimberg, van der Meer, & Luijkx, 2019

    [2] Kabacińska, et al. 2020

    [3] Van Boekel, Wouters, Grimberg, van der Meer, & Luijkx, 2019

    [4] Warraich, Califf, & Krumholz, 2018.