Clinical trial NCT04915209: Integrated Parkinson Care Networks : Care in Parkinson Disease
Official title: Integrated Parkinson Care Networks: Addressing Complex Care in Parkinson Disease in Contemporary Society
Study type: INTERVENTIONAL
Overall status: UNKNOWN
Phase: NA
Conditions: Parkinson Disease
Keywords: healthcare
Lead sponsor: University Hospital, Toulouse
Sponsor class: OTHER
First posted: 2021-06-07
Enrollment: 50
Sex: ALL
Minimum age (years): 18
Maximum age (years): 65
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: Narrative interviews
Primary purpose: SUPPORTIVE_CARE

Brief summary: The researchers wish to determine what are patients/care partners priorities in terms of care delivery based at home/community and define the envisioning care delivery model that support both social care and medical care from the perspective of people living with Parkinson.

Detailed description: The researchers wish to determine what are patients/care partners priorities in terms of care delivery based at home/community and define the envisioning care delivery model that support both social care and medical care from the perspective of people living with Parkinson.

Narrative interviews and workshops are conducted to obtain information on:

1. Everyday life, living with PD (perception and consequences of PD in everyday life)
2. Care delivery priorities from the perspective of PwPs \& Care Partners
3. Factors influencing care delivery (facilitators \& barriers)
4. Needs and expectations about social care and medical care
5. Role playing by eHealth technologies in a care delivery model based at home/community

Narratives are stories that are based on the unfolding of events or actions from the perspective of a patient's life experience. Patients and care partners tell their stories of illness and how they live with illness over time. They are encouraged to share their personal stories of living with PD, using health services, community resources.

The researcher could focus on the care priorities, the support needed, the information needed and the challenges faced. The narrative interview will be used to get an overview of the patient's trajectory.

During the workshop, the participants will collectively create a common representation of the patient journey and co-design the envisioning care delivery model that support both social care and medical care.

A patient journey map gives a common picture of the process and the way patients experience their care delivery. Understanding the patients' experiences of their journey is essential in order to co-design the future care delivery model based at home/community.

Journey map proposes a visual representation of the relationship between patients and the healthcare services. They also help to visually externalize patient experience by placing them at the heart of the modelling process. The journey map is an effective tool that reduces the complexity of health services to a comprehensible representation.

At the end of the workshop, patients' needs and care priorities will be discussed considering the different phases of the patient journey, and the participants will be encouraged to envisioning the future care delivery model based at home/community.

Eligibility criteria: Inclusion Criteria:

* Major patients, over 18 and under 65 years of age, Diagnosed at different stages of Parkinson's disease (recent, intermediate, advanced) Understands and speaks French to be able to answer questionnaires and interviews Affiliated to a social security scheme Patient who did not oppose participation in the study. Where possible, we will vary the profiles of people: socio-demography, gender, age, etc.

Exclusion Criteria:

* Patient and/or participant objecting to the research Pregnant and/or nursing women Persons under justice, guardianship or curatorship In-patient or intensive care patients

Primary outcomes:
measure: Narrative interviews
timeFrame: 1 day
Secondary outcomes:
Other outcomes:
Locations:
city: Toulouse
country: France
facility: CHU de Toulouse
Study officials:
affiliation: University Hospital, Toulouse
name: Olivier Rascol, MD PHD
role: PRINCIPAL_INVESTIGATOR
References: