A recent question came up: "What is the best way to conduct a chronic disease burden study?"
Interesting question.
You want to measure the burden of chronic disease.
First, the data. If you can find good quality data that already exists, this will greatly simplify things... however, in most cases, you will not have access to good quality data.
Good data will be comprehensive (cover the entire population or a representative sample), reasonably current, accurate, and have sufficient detail. It will need to be collected at the individual person level.
Some possible sources of data:
Surveys:
- If there is a recent DHS (Demographic and Health Survey) this might have enough detail on chronic diseases. Most DHS data is of good quality. However, you might not have access to a recent DHS since they are usually only done at intervals of 5 to 10 years.
- Other organizations may have done health surveys and may give you access to their data. You will have to canvass government, NGOs, and aid agencies.
Routine data:
Some routinely collected data such as that from health facilities can be useful if it has detail on chronic diseases. However, there are several problems with routine data. It may not cover the entire population. There is usually no way to track individual patients to come up with a person count as opposed to a visit count. There may be other distortions in the data due to poor recording or patient selection. If you can find routine data that covers the population comprehensively, there are ways to adjust for multiple visits. However, you still may miss people who don't visit the facilities. If there are community outreach workers, they may have data which will give better coverage.
Collect your own data:
You will probably be faced with the task of collecting your own data if you can't find existing good quality data. You will need to do a survey and it does not need to be a large survey if you choose your sample carefully. A small representative sample can give good quality results. The sample should be chosen to be representative of all components of the population, age, sex, location (urban, rural), socioeconomic, etc. A good place to start is the national statistics or census office who often can help you with designing a representative sample. You should design a questionnaire which is as short as possible and tightly focused on the diseases of interest. Consider using biomarkers (measure such things as blood pressure and blood tests) if you have the budget. Here again, community health workers may be a good resource to assist with the survey.
I assume that you will be using one of the common methods to calculate disease burden such as DALY (Disability Adjusted Life Years). DALY results in a number which measures the impact of disease by taking into the degree of disability for a disease as well as mortality. It is also discounted for future years of loss which is appropriate since the society has the opportunity to compensate for this loss. The DALY is the most useful number for planners to use when deciding on allocating resources if they take into account the cost to prevent and cost to treat each disease.
Interesting question.
You want to measure the burden of chronic disease.
First, the data. If you can find good quality data that already exists, this will greatly simplify things... however, in most cases, you will not have access to good quality data.
Good data will be comprehensive (cover the entire population or a representative sample), reasonably current, accurate, and have sufficient detail. It will need to be collected at the individual person level.
Some possible sources of data:
Surveys:
- If there is a recent DHS (Demographic and Health Survey) this might have enough detail on chronic diseases. Most DHS data is of good quality. However, you might not have access to a recent DHS since they are usually only done at intervals of 5 to 10 years.
- Other organizations may have done health surveys and may give you access to their data. You will have to canvass government, NGOs, and aid agencies.
Routine data:
Some routinely collected data such as that from health facilities can be useful if it has detail on chronic diseases. However, there are several problems with routine data. It may not cover the entire population. There is usually no way to track individual patients to come up with a person count as opposed to a visit count. There may be other distortions in the data due to poor recording or patient selection. If you can find routine data that covers the population comprehensively, there are ways to adjust for multiple visits. However, you still may miss people who don't visit the facilities. If there are community outreach workers, they may have data which will give better coverage.
Collect your own data:
You will probably be faced with the task of collecting your own data if you can't find existing good quality data. You will need to do a survey and it does not need to be a large survey if you choose your sample carefully. A small representative sample can give good quality results. The sample should be chosen to be representative of all components of the population, age, sex, location (urban, rural), socioeconomic, etc. A good place to start is the national statistics or census office who often can help you with designing a representative sample. You should design a questionnaire which is as short as possible and tightly focused on the diseases of interest. Consider using biomarkers (measure such things as blood pressure and blood tests) if you have the budget. Here again, community health workers may be a good resource to assist with the survey.
I assume that you will be using one of the common methods to calculate disease burden such as DALY (Disability Adjusted Life Years). DALY results in a number which measures the impact of disease by taking into the degree of disability for a disease as well as mortality. It is also discounted for future years of loss which is appropriate since the society has the opportunity to compensate for this loss. The DALY is the most useful number for planners to use when deciding on allocating resources if they take into account the cost to prevent and cost to treat each disease.
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