Integrated Parkinson Care Networks : Care in Parkinson Disease (ICARE-PD)

May 31, 2021 updated by: University Hospital, Toulouse

Integrated Parkinson Care Networks: Addressing Complex Care in Parkinson Disease in Contemporary Society

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.

Study Overview

Status

Not yet recruiting

Conditions

Intervention / Treatment

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.

Study Type

Interventional

Enrollment (Anticipated)

50

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years to 65 years (Adult, Older Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Supportive Care
  • Allocation: N/A
  • Interventional Model: Single Group Assignment
  • Masking: None (Open Label)

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Other: Narrative interviews
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 . 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.
Other: Narrative interviews
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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Narrative interviews
Time Frame: 1 day
Identify the expectations and priorities of people living with Parkinson's disease for medical-social benefits.
1 day

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University Hospital, Toulouse

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Anticipated)

July 22, 2021

Primary Completion (Anticipated)

December 22, 2021

Study Completion (Anticipated)

December 22, 2022

Study Registration Dates

First Submitted

May 31, 2021

First Submitted That Met QC Criteria

May 31, 2021

First Posted (Actual)

June 7, 2021

Study Record Updates

Last Update Posted (Actual)

June 7, 2021

Last Update Submitted That Met QC Criteria

May 31, 2021

Last Verified

May 1, 2021

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • RC31/19/0489

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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