PARKINSON’S DISEASE SOCIETY FORUM

SURVEY OF MEMBERS  2007 (Revised*)
© Briony Cooke - All Rights Reserved 

Survey aims and methods

The purpose of the survey was to draw up a profile of 100 PDS Forum members who had been diagnosed with Parkinson’s disease. The information was used to determine the age and gender structure of the population. Participants were asked for information relating to Parkinson’s and focusing on specific factors identified in the research as having a causal link. The survey was carried out between August and November 2007. 

The following information was provided by participants of the survey:

Gender
Year of diagnosis
Age at the time of PD diagnosis
Current age
Present or past occupation
Hobbies and interests
Coffee drinking habits
Smoking habits. 

The Results

The analysis was based only on quantified data as listed below. Other aspects of the survey including habits and hobbies were not included at this initial stage 

A         Current age structure of the population

B         Number of years since diagnosis

C         Gender balance of the population

D         Past and present occupation.

A         Current age structure of PDS forum members diagnosed with Parkinson’s.

The age cohort with the greatest number of PDS members is 50-54 and 13% are over 65. European and US surveys show a later peak at 60-64 and approximately 80% over 65. However, comparisons between sets of data for prevalence (the number of cases at any one time) and incidence (new cases per year) need to be  made with caution because the methodology in sample selection varies, thus a limited number of conclusions can be drawn.

The forum participants are younger than the Parkinson’s population as a whole and they appear to represent a relatively privileged sector of the UK population that has access to the Internet. 38% of the UK population uses the Internet and of these only 4% are aged over 64. Whereas, forum participation for the over 64 age group is relatively high at 13% .

B         The number of years since diagnosis

The majority of participants had been diagnosed in less than a year. The average number of years since diagnosis was 4.3. This suggests that the PDS Forum provides an important service in terms of information and support for the recently diagnosed. Usage of the forum appears to be inversely related to the prevalence of Parkinson’s amongst the UK population which shows a predictable increase with age. This mismatch may reflect the level of incapacity of the population with advanced Parkinson’s and also their lack of access to the Internet. It may also indicate that they no longer require information, having lived with the disease for many years.

C           Gender balance of the PDS Forum population

In general, Parkinson’s disease affects men more than women (although there are some international variations). Previous UK studies suggest a male to female gender ratio of 1.12:1. In this survey, the  ratio is 1.17:1 (or 54% male) whereas the UK Parkinson’s population as a whole has a higher portion of men at 1.46 1 for 68% male.

 A useful reference the topic of gender is found at:

http://jnnp.bmj.com/cgi/content/abstract/78/8/819

This research identifies influence of oestrogen  as a neuroprotective factor accounting for the lower incidence of Parkinson’s amongst women.

D         Occupation (past and present)

Past and present occupations did not match an official UK classification, but were devised to distinguish those occupations already identified as high risk.

The unusually high percentage of teachers represented in the survey  (26%) corresponds to previous research, but conclusions cannot be drawn without careful consideration for the methods of data collection and the relationship between occupation and Internet usage. For example, it may be possible that teachers are more willing to engage in forum discussion and  to submit personal details.

E         Conclusions on the PDS Forum Survey

The value of the survey

• The survey suggests that the PDS Forum is in high demand amongst younger, newly diagnosed members. The forum provides them with information and support which may not be available in the community.
• The data confirm a higher incidence amongst men who also appear to be diagnosed at a younger age. Male bias is less pronounced than in the UK data and may be skewed by the popularity for Forum activity amongst women.
• This PDS survey also reveals a disproportionately high number of members who have worked in education, the health service and occupations involving the handling of chemicals. Other research identifies occupation as one of many factors which may influence the onset of Parkinson's disease.
• The survey provides information for users, especially the recently diagnosed who may wish to see the profile of people with long-term experience of living with Parkinson’s. Such information is often unavailable from the medical profession.
• It has an important socialising for the Forum.
• This survey could be regarded as a pilot for further research by another body.

The limitations of the survey.

• The sample of 100 represents only a small proportion of the total number of users of this forum and only 0.83% of the UK’s total population with Parkinson's. Only tentative conclusions may therefore be reached.
• The sample is socially selective and is likely to be biased towards a younger population with a higher level of income and educational skills than the UK PD population as a whole.
• The questions were self-limiting and unlikely to produce data that can be processed statistically. For example, all occupations of members should have being recorded along with their duration and relative importance.
• Personal and social factors may have influenced the sample population. It is likely that participants were more confident and willing to participate than the national Parkinson’s population.

Acknowledgements

Thanks go to all the members of the PDS Forum who gave time and effort to participation in this survey.

http://viartis.net/parkinsons.disease/prevalence.htm