healthcare disparities

A few months ago there was an article in a prominent medical journal about an association with one’s income and place of death (it was looking at hospice patients only). The higher one’s income the more likely someone was to die at home with hospice rather than in a nursing home or hospital.

As a practicing physician,  that there are healthcare disparities bothers me. There are multiple factors that go into this. Some are patient related (limited english skills, little/no social support in cases of people with little mobility), some are patient and societal (I would put literacy here, not just health literacy). As of 2013 I would hope that being a member of a minority would not have an effect on one’s healthcare. There is evidence  – and i don’t recall which journal I saw this in – that minorities that go to hospitals that have good healthcare results do as well as non minorities, and those that go to hospitals with less good results have corrispondingly poorer outcomes. In this case I guess we could argue for putting systems in place for all health care institutions to give health care with good results.

One thing physicians get measured on are things like checking cholesterol levels, glycosylated hemoglobin A1c’s twice a year, etc. However  to just focus on measures like that take time and energy away from measuring and doing other things that ‘count’. Sending someone for a test and usually takes less time than spending 1/2 an hour educating patients as to why those measures count and how to take care of their health. There have been articles that have brought this issue up. There are easy answers. However, I have a feeling that at least as of 2014, having processes in place to be sure that patients are educated about disease prevention and self management would go a lot farther in preventing complications than would checking a glycosylated hemoglobin twice a a year.

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(of a person or animal) able to withstand or recover quickly from difficult conditions.

DERIVATIVES:resilience noun, resiliency noun, resiliently adverb

It’s taken me a bit longer to do this post than I originally had hoped it would. Given the events in Boston this past  few weeks, this word resilience has been going through my mind a lot. Though it did also go through my mind due to other recent events as well (Newtown CT, Aurora CO among others). I do not want to sound as if I am medicalizing whatever caused the people who killed and maimed over 170 people. However, being the optimist that I am, I think people’s basic makeup is to be nice to other people and have a “live and let live” attitude to others that they disagree with or have no particular connection to.  I sometimes wonder what happened to people that would drive them to commit such acts of horror, that overcomes whatever resiliency that would otherwise keep them functional, reasonably happy people.

As a practicing physician I often get to see a side of people that they don’t often show others. There are the people who have gone through whatever traumas life has presented them and are married, have children and work. Others don’t seem as lucky, as if somehow given the same number and intensity of  shocks to their system used up whatever resiliency they have. They seem to go from moment to moment as if their lives are going to collapse. Anxiety seems to seep from their pores when they come into my office.

I have no answers as to why some people are more resilient than others. Often people who grew up in tough situations (few resources at home, single parents, drugs/violence in the neighborhood) make the news for getting into Harvard, Yale or some other school and “made it”. Was it that their parents and teachers helped them stay resilient. What about the people who are mirror images … they have caring parents who model being nice, giving to others, tolerance, don’t have  to worry about where if they are getting their next meal and where it’s coming from but somehow end up being unable to say no to whatever demon (now I’m speaking figuratively here, not literally) overwhelms whatever their resiliency can handle and they end up having issues (for lack of a better word) with drugs, violence or whatever.

Perhaps this will be my only foray into making any sort of commentary on society or sounding like I’m living in left field (or perhaps the peanut gallery) but: perhaps in addition to the three ‘Rs that are taught in school, Resilience should be added as a fourth R. Does it need to be  separate class? Probably not, life doesn’t happen in discrete blocks (I don’t spend one hour doing math, another hour ‘doing’ history, another ‘doing English’  i.e. reading writing, explaining things to people either verbally or in writing, and so forth)  and some things in school shouldn’t  either. Just learning that a bad grade in one test or class doesn’t mean the end of the world. Nor does having difficulty with one class or multiple subjects if given the skills/help in figuring out what helps someone learn. Ideally it’s something people should learn at home.

For something that affect health and quality of life, resilience is probably underrated. It is not the cure for all ills (if one is resilient, it doesn’t make one immune to getting cancer, diabetes, hypertension, etc). I suspect those who are more resilient are more able to deal with any chronic illness they might have and are more likely to take medication (if needed), follow up with any lifestyle changes that would affect their health (diet and exercise don’t become less important in diabetics once they start medication).  Would someone who’s resilient be less likely to do something that the  bombers did, that I don’t know. The answer to that, I leave to the psychiatrists, public health officials, philosophers, and those who actually do research in the area.

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Screening – part II

In my previous post I wrote about the kinds of screening that could be though of as what you get for having reached a certain age (eg, age 50 for colonoscopy/colon cancer screening) or age +/- behaviors (eg, a sexually active female above a certain age). In future posts I might write about a particular screening test in more depth.

However in this post I’d like to talk about screening for genetic diseases. This is a bit different that the screening I wrote about last time and people can fall into several groups. One group is to see if someone will develop a disease. One disease that fits this mold is Huntington’s Chorea. People who have the mutation do  go on to develop the disease. For Huntington’s Chorea there needs to be a clear family history for testing. For Huntington’s, as well as well as other’s like it, there are multiple things to consider before testing. A big consideration  for Huntington’s Chorea is how one would handle the information if one was found to have the disease (there is no asymptomatic carrier state the same way there is for tay sachs, sickle cell anemia and others). Either you have the mutation and will develop the disease or you don’t and won’t. Someone might choose only to get tested if there is a chance they will have kids and want to know the chances of passing the disease onto their children, or to do prenatal testing, which brings up a whole lot of other issues beyond the scope of this post (what would you do if the test was positive? would you end the pregnancy? Would you go forward knowing you and the child you bring into the world would develop the disease? Would you get tested or do prenatal testing of the child if you were against ending the pregnancy? If you get tested before pregnancy and are positive, would you decide not to have children or would you do some sort of pre-implantation diagnostic testing and then only implant embryos that are free of the disease  – this latter approach might not be something insurance covers which is a whole other discussion/set of issues). Another disorder that fits into this category is Familial Polyposis Coli.  People who inherit this disorder have a virtually 100% chance of developing colon cancer and have an average age of 39 at the time of diagnosis of colon cancer. There are a few mutations associated with this disease which give rise to a somewhat different course of disease (mainly in the average age of diagnosis, # of polyps, etc). To my knowledge the best diagnostic tests for this are family history and colonoscopy rather than genetic testing – it allows for biopsy, quantification of the # of polyps, etc). In this case testing for the disease poses fewer of the issues than say, Huntington’s as there is a treatment available for this disease. If or when there is a treatment for Huntington’s chorea, then some some of the thornier issues mentioned above change.

This brings us to the next group – screening for a carrier state. What disorders one screens/gets screened for depends on one’s family history as people from different parts of the world are at risk for different diseases. Examples of disorders I am thinking of include Sickle Cell Anemia, any of the Thallessemias (and there are several. Some are lethal if inherited. Others are lethal or more symptomatic if two forms are interited together) If one is free (as best as genetic testing can tell), one’s partner might still want to be tested. Their children might not be at risk but grandchildren might and knowing that risk can be helpful. If both partners carry the trait for a particular disease several options exist. Some I mention above (testing pre implantation genetic diagnosis, aka PGD), deciding not to have children, etc. How one might choose to use the information is a matter of conscience.

In the last group of screening, it is to assess whether one is at risk for developing diseases where family history of suggestive of high risk: testing for BRAC1 and BRAC2 mutations in people whose family history includes a high incidence of breast and/or ovarian cancer, for example. This group is similar to the first one. Family history can guide if someone’s high risk. It is unlikely a clinical geneticist would screen for Huntington’s in someone with no family history whatsoever. If the family history shows only sporadic cases of breast or ovarian cancer, for example, testing for BRAC1 and BRAC2 would be less helpful. In these cases it is the person him/herself who’s at risk for the disease.  With some tests such as for BRAC1 and 2, the risk of disease may not be 100%, as it is with Huntington’s. In cases testing, some can decide about, say prophylactic mastectomy and/or oophorectomy, whether to wait after one has had children, etc. Of note, even if the risk is for typically a “womens’ disease” and the risk is on a father’s side of the family it is worth testing for.

Some last thoughts on this issue. If one is thinking of doing any sort of genetic testing, a primary care physician is a good place to start as he or she will at least be able to give some input on how likely one has a hereditary syndrome running in the family. However for actual testing it’s better to go through a clinical geneticist for testing. They have the background to pre and post test counseling.  The clinical geneticist will also be be set up with a lab that would do the testing, as even in a tertiary care center, the laboratories that do the testing are more specialized than  those that do the routine testing physicians do.

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