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| PWS is found in people of both sexes and all races worldwide. Luis Emilio was born and is currently living Nicaragua. |
I have been blogging about PWS in hopes to contribute to the Prader-Willi Syndrome on the Move awareness initiative. Can blogging really increase awareness though? Life can get pretty busy. Especially if you have a family member with PWS that requires physical therapy, office visit to multiple specialists, in addition to the usual things most of us have to do on a regular day. We want to make sure that family members and friends interested in increasing awareness are investing their time in things that are really making a difference. One of the benefits of using the Internet to increase awareness is the number of potential people that will be exposed to the blog. The down side is, it makes it very difficult to measure the effect of our efforts.
Study design: I propose doing a cross sectional study to explore the relationship between blogging about PWS and awareness about the signs and symptoms seen in patients with PWS. Participants in the study will fill out a short survey that will evaluate their level of knowledge about PWS and the level of exposure to this blog. This will allow us not only to determine if there is any relationship between blogging and awareness, but it will also allow us to determine the proportion of the population that is exposed to the blog.
Study population: Students enrolled in the principals of epidemiology class at MU during the spring semester of 2011. This blog is part of an epidemiology project. Part of our assignment is to read other students blog. Students are not required to read everyone’s blog. This makes it a convenient population to study because we can expect to have students that have read the blog and students that have not read the blog.
Exposure variable: Number of post about PWS the student read from the blog: sonia-lookingforhappiness.
Outcome Variable: Percent of questions answered correctly about the signs and symptoms in patients with PWS.
Sample size: Because the study population is relatively small we can afford to survey the entire class. The proportion of students exposed to the blog and the effect size, if any, found in this study can be used for calculation of sample size in future studies on this subject that may have a larger study population.
Limitations of the study:
1. We are measuring the exposure and the outcome at the same time and therefore we cannot determine a temporal relationship. It may be that students with increased awareness about PWS were interested in reading the blog.
2. The exposure variable is subject to recall bias. Students may not remember how many post they read or if they read the blog at all. This may also lead to misclassification. For example, a student may not remember that he skimmed through a couple of post at the beginning of the month and be classified in our study analysis as a non-exposed student.
3. Although our goal would be to survey the entire class. Students may decide not to participate in the study. This can lead to selection bias. Students that have increased awareness about PWS would be more likely to complete the survey weather or not they read the blog.
4. Participants in the study would be graduate students, many with a health background; hence generalizability of the results to the general population is limited.
5. There are multiple known confounders that we would need to control for. For example: the different levels of medical knowledge in students in the class. If only the students with a health background read the blog, a higher percent of correct answers on the survey may not be related to the blog at all!
6. The study doesn’t measure the effect it has on other readers that are not in the class!
Do you think that blogging increases awareness?
Sonia, I do think that blogs can be informative, especially ones that include links to evidence-based fact sheets & scientific studies, etc. The survey might need a question about having a family member or friend with PWS, as well as medical training/knowledge to screen out those with more previous knowledge, to decrease the bias. Also, how would you recommend expanding your survey to a greater population than our class? Social media have been used to coordinate revolutionary protests! With the current generation of "wired" people, it can be an excellent educational & marketing tool!
ReplyDeleteHi Sonia,
ReplyDeleteThis is a very interesting topic. I have a lot of interest in learning about different diseases and syndromes so I understand your limitation of generalization. I think this would be a good basis to understanding what would be needed to expand education to the non-health professional population. That also makes me wonder though, is it better to put our resources towards educating those closer to the health-related field or to non-health professionals?
Hi Sonia,
ReplyDeleteI think it is great that you are blogging about a rare disease such as PWS. Do you think fellow status should be an exclusion criteria for your study? Also, since often times we do not know or recollect where we acquire information from, how could you control for other sources of knowledge (TV, other blogs, etc)?
I don't think fellow status should be an exclusion criteria. PWS is a rare genetic disorder which many physicians might not know a lot about. I think I need to control for level of medical knowledge when analyzing the data. There are also nurses in the class. If I remember correctly one of them use to work in the peds department. She may remember more things about rare pediatric diseases then an Internal medicine fellow who has been seeing only adults for the last 4-5 years of training, or a family medicine fellow. Family medicine fellows see children in their practice, but still it is a small number compared to a nurse working in the inpatient pediatric department.
ReplyDeleteControlling for other sources of knowledge is more complicated. Hopefully we are controlling for that by comparing level of knowledge to the non-exposed group.
It could be that the exposed group researches PWS from other sources after reading my blog. Obtaining information from other sources I don't think is as important to control for because the impact of the blog is still an increase in awareness. If reading the blog will make people want to get more information from other sources then it is useful to blog! Which answers the research question.
nkaqr4,
ReplyDelete"It takes a whole village to raise a child"- African proverb
One of the biggest challenges with patients with PWS is controlling how much they eat. It's hard for people to understand why a refrigerator has to be locked in the house, or how important it is not to offer them candy. Food is all around us. It's important to educate the whole community.
If a health care professional encounters a patient with PWS, they will get information about PWS and be able to apply it as needed for their job with out much difficulty. That's what we are trained to do. The success of treatment doesn't depend just on the health care worker though. It depends on the teacher not offering candy at school, other parents putting snacks in places they can't reach when they are visiting and well the list goes on. Food is everywhere!!
I have given most of my family members information about the syndrome, but it has taken years for them to understand how dangerous it is to let him eat what he wants.
The more people that are aware about PWS, the easier it will be to make changes in their environment to help them succeed.
Lisa,
ReplyDeleteGreat points! I think it's definitely important to include questions about medical training/knowledge and prior contact with someone with PWS.
It's hard to design a study with a larger population. I could add one of those pop-up surveys I never answer that I've seen in other web sites...but who would be the control group? If you have any ideas let me know!!
I know that social media has been used to start revolutions. It's easy to get people reading about something they are all feeling though.
My questions when we blog about things like epidemiology is, who will read it? If we are preaching to choir, it seems like a waist of time. It would be great if the general public had a better understanding of epidemiology. They would make better informed decisions. Understand how complex it is to make medical decisions and not be so harsh or quick to judge policy changes, guidelines or their personal physician. The question is, who is reading our blogs? and did we make a difference?