Home and health in people ageing with Parkinson’s disease: study protocol for a prospective longitudinal cohort survey study

Nilsoon, Maria, H. and Iwarsson, Susanne (2013) Home and health in people ageing with Parkinson’s disease: study protocol for a prospective longitudinal cohort survey study. BMC Neurology, 13 2013: 142.1-142.9. doi:10.1186/1471-2377-13-142

Author Nilsoon, Maria, H.
Iwarsson, Susanne
Title Home and health in people ageing with Parkinson’s disease: study protocol for a prospective longitudinal cohort survey study
Journal name BMC Neurology   Check publisher's open access policy
ISSN 1471-2377
Publication date 2013-10-01
Sub-type Article (original research)
DOI 10.1186/1471-2377-13-142
Open Access Status DOI
Volume 13
Issue 2013
Start page 142.1
End page 142.9
Total pages 9
Place of publication London, United Kingdom
Publisher BioMed Central
Language eng
Formatted abstract
Background: With an increased life expectancy for the general population as well as for those ageing with chronic diseases, there are major challenges to the affected individuals and their families, but also to health care and societal planning. Most important, an increasing proportion of older people remain living in their ordinary homes despite health decline and disability. However, little is known about the home and health situation of people ageing with Parkinson's disease (PD), and older people are often excluded from PD-research.

Methods/design: The overall aim of the present project is to generate knowledge on home and health dynamics in people with PD, with an explicit attention to PD-specific symptomatology. We will concentrate on aspects of home and health captured by state-of-the-art methodology from gerontology as well as PD-research, health science and rehabilitation. This study protocol describes a longitudinal cohort survey study that includes a baseline data collection and a 3-year follow-up. Both data collection waves include self-administered questionnaires, structured interviews, clinical assessments and observations during home visits effectuated by research staff with project-specific training. In order to arrive at a follow-up sample of N=160, 250 participants identified by PD specialist nurses are being recruited from three hospitals in southern Sweden. With no lower or upper age limit, only those diagnosed with PD since at least one year were included. The exclusion criteria were: difficulties in understanding or speaking Swedish and/or cognitive difficulties/other reasons making the individual unable to give informed consent or to take part in the majority of the data collection. The data collection targets environmental factors such as assistive devices, social support, physical environmental barriers, accessibility problems and perceived aspects of home. A broad variety of instruments tap PD-specific problems (e.g. freezing of gait, fear of falling) and health-related issues such as general self-efficacy, body functions, activities and participation.

Discussion: This project will produce knowledge to the benefit of the development of health care and societal planning that targets people ageing with PD, ultimately promoting activity and participation and an increase of the number of healthy life years for this sub-group of the population. 
Keyword Activities of daily living
P-E fit
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Article (original research)
Collection: School of Nursing, Midwifery and Social Work Publications
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Citation counts: TR Web of Science Citation Count  Cited 12 times in Thomson Reuters Web of Science Article | Citations
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Created: Mon, 30 Jun 2014, 21:01:28 EST by Vicki Percival on behalf of School of Nursing, Midwifery and Social Work