Short summary

Evidence-based knowledge is needed regarding people with Parkinsons disease (PD) and their specific needs regarding rehabilitation.

This project aims to investigate the need for phase-specific rehabilitation among people with PD. This will be done through self-reported data, collected in a national survey.  

The study population is expected to include approximately 7000 people living with PD. This population is identified through national registries of patient- and medicine data. The population will receive an questionnaire developed for the purpose. The questionnaire will be sent out electronically to e-boks (an electronic post box all danes are signed up for)

Rationale

In Denmark approximately 7000 people live with Parkinsons disease. PD is a progressive neurodegenerative disease with extensive symptoms that gradually challenges the possibilities for living an independent, active and participating life. Impairments in PD affect physical, cognitive and psychological functioning and as the disease progresses it also becomes increasingly difficult to treat with medication.

Clinically PD is divided into phases based on the level of impairment. The phases range from 0-5 and as the individual with PD moves through each phase the need for multi-disciplinary interventions based on disease-specific knowledge increases.

Despite past years focus on rehabilitation in progressive illnesses, knowledge about rehabilitation in PD is sparse. 

There are sound clinical experiences with goal oriented rehabilitation for people with PD in Denmark and international guidelines have helped these along. Still evidence based arguments for how rehabilitation should be conducted and adjusted is needed. This knowledge thould also take into account how rehabilitation is conducted depending on disability, quality of life and severity of disease. 

Furthermore an overlook is needed on what types of rehabilitation people with PD are offered. In Denmark rehabilitation in regards to PD is conducted in the municipal healthcare system and in specialized rehabilitation facilities. Still it is unclear to which extent people with PD are offered rehabilitation interventions and what they include. It is also unclear how people with PD perceive their own need for rehabilitation.  

This project therefor aims to contribute to a systematic collection of knowledge among people with PD in different phases of illness, to illuminate their self-reported disability, quality of life and need for rehabilitation. This knowledge will contribute to ensuring people with PD rehabilitation based on phase-specific needs.

Description of the cohort

Men and women living with PD  in Denmark

Data and biological material

Questionnaires

Publications associated with the project

REHPA Knowledge Center for Rehabilitation and Paliation

• Researcher and postdoc, Jette Thuesen
• Researcher and datamanager, Tina Broby Mikkelsen
• Research assistant, Tina Backmann

SIF, University of Southern Denmark

• Professor Emeritus, Knud Juel