Content from Twitter
| From: | Tue Dec 21 18:00:00 PST 2010 |
| To: | Tue Dec 21 19:00:00 PST 2010 |
| MD_Chat | Welcome to #MDchat! We'll get underway soon, but first introduce yourselves! | |
| EinsteinMed | RT @mkmackey: "Tests Detect Alzheimer’s Risks, but Should Patients Be Told?" http://ow.ly/3sOYi Interesting topic.. 2 min #mdchat #hcsm | |
| GailZahtz | For the next hour I'll be learning from physicians about Alzheimer's during a chat. Feel free to join in or lurk! #mdchat | |
| EinsteinMed | Hi gang - Paul Moniz here - Albert Einstein College of Medicine in NYC. Hope everyone is having a great week. Good topic 2nte. #mdchat | |
| mdstudent31 | Spending the next hour chilling w/ physicians on #mdchat | |
| RichmondDoc | Mark, family doc in #RVA, pondering the ethical and moral issues this chat will address...tough topics. #mdchat | |
| ability4life | #MDchat Kathy Kastner health blogger, Alz hightly relevant for my site, www.ability4life.com 4 adult kids taking care of aging parents | |
| mdstudent31 | Hey everyone! Kevin, 4th year med student, fam med advocate, just matched family med in the Navy, looking fwd to following along! #mdchat | |
| ocamsrazor | greetings, gen int. med MD #mdchat | |
| MD_Chat | There will be 3 topics - 2 specific to Alzheimer's & the last one related but of general topical discussion. #MDchat | |
| apjonas | Pat Jonas, MD Holistic Family Physician in OH. Hi everyone! #mdchat | |
| MD_chat | @mdstudent31 Welcome! #MDchat | |
| mdstudent31 | @MD_CHat thanks! Happy holidays to everyone! #mdchat | |
| MD_chat | T1 Alzheimer’s: Discuss +/- of & the dilemma of foreknowledge of Dx. #MDchat See: http://nyti.ms/gZvBt6 by @ginakolata | |
| NursingLink | U.S. #Doctor Distribution Uneven http://ow.ly/3sP3H #mdchat | |
| EinsteinMed | Shoutout to @mdstudent31 @RichmondDoc @ability4life @mkmackey Glad you made it. #mdchat | |
| EllenRichter | Oh dear, computer not obeying tonight! I am Ellen, a nurse who deals with critically ill people, some with alzheimers. Very tough #MDchat | |
| GailZahtz | RT @EinsteinMed: Shoutout to @mdstudent31 @RichmondDoc @ability4life @mkmackey Glad you made it. #mdchat <=Wouldn't miss you! | |
| RichmondDoc | T1 This is an issue not directly related only to Alzheimer's Disease (AD)--also an issue for any illness w/ screening but poor Rx. #mdchat | |
| ability4life | Thanks! RT @EinsteinMed: Shoutout to @mdstudent31 @RichmondDoc @ability4life @mkmackey Glad you made it. #mdchat | |
| mdstudent31 | RT @GailZahtz: RT @EinsteinMed Shoutout to @mdstudent31 @RichmondDoc @ability4life @mkmackey Glad you made it #mdchat | |
| EllenRichter | T1 Biggest dilemma to foreknowledge at this point is where do you go once you know? #MDchat | |
| RichmondDoc | T1 There are many illnesses w/ early Dx but poor/little treatment. What role does early Dx play if no effective Rx available. #mdchat | |
| EllenRichter | T1 If I had a choice, though, I guess I would want to know if I had Alzheimers (AD) #MDchat | |
| mdstudent31 | T1: Implications for insurance premiums? If ACA repealed - pre-existing condition?? #mdchat | |
| GailZahtz | RT @EllenRichter: T1 Biggest dilemma to foreknowledge at this point is where do you go once you know? #MDchat <=also families & caregivers | |
| mkmackey | T1 Should a patient learn about a future diagnosis? A genetic testing issue as well #mdchat | |
| EinsteinMed | Ability 2 diagnose /develop predictive models vastly outpacing ability to treat Alz. With no long-term tx, would you want to know? #mdchat | |
| RichmondDoc | T1 Similar issues with Huntington's Dz. What are the ethics of Dx w/o Rx? #mdchat | |
| ocamsrazor | only role I see is early decision making for unfortunate pt with Dx #mdchat | |
| mdstudent31 | T1: Seems "Gattaca"-like #mdchat | |
| EinsteinMed | Some pts feel it's their right to know. RT @RichmondDoc: T1 Similar issues with Huntington's Dz. What are the ethics of Dx w/o Rx? #mdchat | |
| RichmondDoc | @mdstudent31 Absolutely a risk. There is a law preventing discrimination on basis of genetic testing, but not in settings like this #mdchat | |
| GailZahtz | RT @mkmackey: T1 Should a patient learn about a future diagnosis? A genetic testing issue #mdchat <=w/many other dx pt's can get treatment | |
| EllenRichter | T1 With earlier diagnosis, preparations can be better made for future decisions & control over the AD victim #MDchat | |
| RichmondDoc | RT @ocamsrazor: only role I see is early decision making for unfortunate pt with Dx [True; this might be the only benefit] #mdchat | |
| mdstudent31 | @RichmondDoc seems like a slippery slope from there in respect to knowledge of all genetic issues #mdchat | |
| ability4life | #MDchat If pts want to/feel its their right. 2 know. isn't that part of impowerment? | |
| apjonas | T1#mdchat The patient has the problem, so they have to decide what to do. We are mirror holders, hand holders and doctors, not gods. | |
| ability4life | RT @apjonas: T1#mdchat The patient has the problem, so they have to decide what to do. We are mirror holders, hand holders and doctors, ... | |
| RichmondDoc | @EinsteinMed Agree that pt's do have a right to know. But the testing needs to come w/ careful counseling re: what info means. #mdchat | |
| ability4life | RT @EllenRichter: T1 With earlier diagnosis, preparations can be better made for future decisions & control over the AD victim #MDchat | |
| GailZahtz | RT @ocamsrazor: only role I see is early decision making for unfortunate pt with Dx #mdchat <=it also gives pts time to do things b4 too ill | |
| EinsteinMed | RT @EllenRichter: T1 With earlier diagnosis, preparations can be better made for future decisions & control over the AD victim #MDchat | |
| mdstudent31 | T1: Patients must be protected in regards to coverage/premiums, but targeted for earlier tx options #mdchat | |
| EllenRichter | T1 When someone with AD gets ill & needs hospitalization, it creates a whole new set of critical safety issues during medical rx #MDchat | |
| RichmondDoc | @ability4life One of the slippery slopes. If medicine has a duty to avoid harm, but if Dx creates emotional distress & no Rx helps? #mdchat | |
| mkmackey | What if patient doesn't become ill according to time schedule? Lost time in anxiety? #mdchat | |
| apjonas | @EllenRichter They are not victims, in my opinion.#mdchat | |
| mdstudent31 | @RichmondDoc @ability4life and if Rx sides > benefit if Tx early? #mdchat | |
| ocamsrazor | @GailZahtz @ocamsrazor we all should do things B4 too ill/too late #mdchat | |
| RichmondDoc | @ability4life @EinsteinMed not saying that the Dx is not a pt's right; I feel docs need to be careful in presenting what info means. #mdchat | |
| apjonas | RT @RichmondDoc: @EinsteinMed Agree that pt's do have a right to know. But the testing needs to come w/ careful counseling re: what info means. #mdchat | |
| ocamsrazor | @apjonas @EllenRichter agree #mdchat | |
| beRt_MD | #MDchat Hi. Hospitalist here. I think it's a personal choice. Can't generalize. Knowing can be painful for some and empowering for others. | |
| PracticalWisdom | Sorry I'm late Lisa Curious Adult Educ. Scholar morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #MDchat | |
| MD_Chat | T1 Just for post-chat reference, here's a huge Alzheimer's resource (pdf), h/t @EinsteinMed http://ow.ly/3sV4d #MDchat | |
| EinsteinMed | @RichmondDoc RE T1/careful counseling. Essential. Many of these tests have variable interpretations. Pts might feel fate sealed. #mdchat | |
| EllenRichter | @apjonas What would you call it when you deal with the symptoms of AD? I'd be happy to use your term #MDchat | |
| ability4life | Doesn being a pt = emotional distress RT @RichmondDoc: meds has duty 2avoid harm, but if Dx creates emo distress & no Rx helps? #mdchat | |
| RichmondDoc | T1 Pros: early Dx, poss early preparations. Cons: distress, ? discrimination, side effects, $ spent, emotional distress/depression. #mdchat | |
| mdstudent31 | T1 Say it's pt choice, they test +, will insurance cover Tx without knowing how long til Sx and Dx would actually occur? #mdchat | |
| apjonas | @mkmackey yes. Most of my pts don't want the genetic test. Don't want to know if they will be like Mom. #mdchat | |
| ability4life | RT @EinsteinMed: @RichmondDoc RE T1/careful counseling. Essential. Many of these tests have variable interpretations. Pts might feel fate sealed. #mdchat | |
| GailZahtz | RT @ocamsrazor: @GailZahtz @ocamsrazor we all should do things B4 too ill/late #mdchat <=Agree but this is so awful, early dx gives a chance | |
| ocamsrazor | best AD tests only 90% diag accuracy, prevalence AD 50% in mild cog. impairmnt #mdchat | |
| RichmondDoc | @ability4life Yes; AD Dx will create emotional distress. But is it better or worse for that distress to begin 20 yrs before sxs? #mdchat | |
| PracticalWisdom | Thought this was also a great piece: http://www.nytimes.com/2010/12/18/health/18moral.html?partner=rss&emc=rss #MDchat | |
| EllenRichter | T1 Many diagnoses cause emotional distress, but it doesnt mean we withhold information. Remember empowerment comes with knowledge #MDchat | |
| ability4life | Ah. IMHO depends on ptRT @RichmondDoc: Yes; AD Dx will create emo distress. But better or worse for distress 2 begin 20 yrs b4 sxs? #mdchat | |
| ability4life | RT @EllenRichter: T1 Many diagnoses cause emotional distress, but it doesnt mean we withhold information. Remember empowerment comes with knowledge #MDchat | |
| GailZahtz | @RichmondDoc Many of us, having watched family's generations go through it, don't need a genetic test to know it's often inevitable. #MDChat | |
| RichmondDoc | @ability4life @EllenRichter Hence need for careful pre-test and post-test counseling. What do pts expect/want, what does info mean? #mdchat | |
| GailZahtz | RT @EllenRichter: T1 Many diagnoses cause emotional distress, but it doesnt mean we withhold information. Remember empowerment comes with knowledge #MDchat | |
| ocamsrazor | @GailZahtz Could also lead to doing "wrong/bad" things B4 too late.. desperate times=desperate measures #mdchat | |
| beRt_MD | #MDchat analogous to prenatal screening. Would-be parents may not want to know if it's not going change what they decide. | |
| PracticalWisdom | RT @beRt_MD: #MDchat analogous to prenatal screening Would-be parents may not want to know if its not going change what they decide. #MDchat | |
| ocamsrazor | Dx also impacts family members...? do I have it too #mdchat | |
| apjonas | @EinsteinMed @RichmondDoc Great point on variable interpretation of tests. Society feels med tests black and white. We live in gray#mdchat | |
| RichmondDoc | T1 Any such testing *must* come with true informed consent. Once pts have the info, cannot be undone. #mdchat | |
| GailZahtz | @ocamsrazor It's a risk, but I think most people do the most good they can for themselves & others when time is knowingly limited. #MDChat | |
| ability4life | Agree RT @RichmondDoc: @ability4life @EllenRichter Hence careful pre-/post-test counseling. What pts expect/want, what ds info mean? #mdchat | |
| mkmackey | @beRt_MD it is a difficult decision in all respects. #mdchat | |
| ability4life | RT @GailZahtz: @ocamsrazor It's a risk, but I think most people do the most good they can for themselves & others when time is knowingly limited. #MDChat | |
| RichmondDoc | RT @ocamsrazor: Dx also impacts family members...? do I have it too [True: need to consider the broader impact for pts/families] #mdchat | |
| EinsteinMed | Sobering Every 70 sec. an American develops Alzheimer’s; by 2050 (with aging boomers) rate will be every 33 seconds (alz.org) #mdchat | |
| apjonas | RT @EllenRichter: T1 Many diagnoses cause emotional distress, but it doesnt mean we withhold information. Remember empowerment comes with knowledge #MDchat | |
| ability4life | RT @RichmondDoc: RT @ocamsrazor: Dx also impacts family members...? do I have it too [True: need to consider the broader impact for pts/families] #mdchat | |
| mdstudent31 | @RichmondDoc Even with informed consent, what keeps pt from bringing about lawsuit for non-economic damages? #mdchat | |
| MD_chat | @ocamsrazor Very true. #MDchat | |
| EllenRichter | @RichmondDoc T1 I think pts & families would want to prepare better for when AD symptoms begin to occur. #MDchat | |
| beRt_MD | #MDchat patients have right to know. Just not sure it's in their best interest to know too soon. | |
| ability4life | A bit paternalistic, no?RT @beRt_MD: #MDchat patients have right to know. Just not sure it's in their best interest to know too soon. | |
| RichmondDoc | @EllenRichter T1 Counterpoint could be: what if pts feel the end is inevitable and become depressed or hurt themselves? #mdchat | |
| EllenRichter | Those are mind-boggling stats! RT @EinsteinMed: Every 70 sec an American develops Alzheimers; by 2050 rate will be every 33 sec #MDchat | |
| mdstudent31 | @RichmondDoc -Re: Counterpoint - Same thing w/ HIV testing? #mdchat | |
| GailZahtz | Isn't the idea of empowered patients that we trust pts to make the best decisions for themselves with the most accurate information? #MDChat | |
| RichmondDoc | @mdstudent31 Good point, one that hasn't been mentioned yet or mentioned in the NYT article. Could pts sue docs after the test? #mdchat | |
| ocamsrazor | benefit of early testing is if neg...then must look for other cause of early cog. impairment #mdchat | |
| EinsteinMed | Impact of Alz on family HUGE: 2009: 10.9 M family/caregivers of people with Alz/dementia provided 12.5 B hours of care (alz.org) #mdchat | |
| ability4life | RT @GailZahtz: Isn't the idea of empowered patients that we trust pts to make the best decisions for themselves with the most accurate information? #MDChat | |
| RichmondDoc | @mdstudent31 Key difference: HIV has active, effective treatment that prolongs life and that prevents morbidity/mortality. #mdchat | |
| ocamsrazor | easier to Tx HIV #mdchat | |
| beRt_MD | @ability4life It's how I feel; Doesn't affect my ability to give dx and options. Seen lots of cases where pts have dx but can't rx. #MDchat | |
| EllenRichter | @RichmondDoc T1 I think knowing about Alzheimers is just the same as knowing about cancer that has no treatment. Still can plan #MDchat | |
| mdstudent31 | @EinsteinMed: Increase in Dx/Sx due to more Dx? Is it all truly Alzheimers vs multi-infarct vs etc (yea, mdstudent DDx!) #mdchat | |
| RichmondDoc | @ability4life @GailZahtz I agree that empowered pts should be able to make their own decisions: but must insure info is understood. #mdchat | |
| westr | RT @MD_Chat: Tonight on #MDchat we'll be discussing @ginakolata NYT post on Alzheimer’s Risks: http://ow.ly/3sJve 9pm Eastern! | |
| ability4life | RT @EllenRichter: @RichmondDoc T1 I think knowing about Alzheimers is just the same as knowing about cancer that has no treatment. Still can plan #MDchat | |
| mdstudent31 | True story: RT @RichmondDoc: Key difference: HIV has active, effective treatment that prolongs life and that prevents M&M. #mdchat | |
| mkmackey | LOL.. I did not choose to know the sex of my 3rd child where planning would have been helpful. #mdchat | |
| RichmondDoc | @EllenRichter True. But a difference if the test shows increased risk of a dz vs. formal and official Dx of a dz. Is AD there yet? #mdchat | |
| GailZahtz | @RichmondDoc I definitely agree that it's with the most "accurate information" & that counseling and pt/md communication key. #MDChat | |
| mdstudent31 | @ability4life lots of financial planning could be beneficial esp for assisted living, and future placement #mdchat | |
| ability4life | 4 sure!RT @mdstudent31: @ability4life lots of financial planning could be beneficial esp for assisted living, and future placement #mdchat | |
| PracticalWisdom | Important point from the article: “We don’t know for certain what these results mean,” Dr. Morris said. #MDchat | |
| RichmondDoc | RT @PracticalWisdom: Important point from the article: “We don’t know for certain what these results mean,” Dr. Morris said. #MDchat | |
| EllenRichter | @RichmondDoc T1 My point comparing AD with cancer is about the depression & poss self harm. It can happen knowing abt any disease #MDchat | |
| beRt_MD | #MDchat Do no harm. One can argue, doing harm by giving dx. But pt's autonomy trumps all. If they want to be tested. It's their right. | |
| ability4life | RT @EllenRichter: @RichmondDoc T1 My point comparing AD with cancer is about the depression & poss self harm. It can happen knowing abt any disease #MDchat | |
| westr | RT @MD_chat: T1 Alzheimer’s: Discuss +/- of & the dilemma of foreknowledge of Dx. #MDchat See: http://nyti.ms/gZvBt6 by @ginakolata | |
| RichmondDoc | T1 we run the risk of a situation analogous to PSA testing for prostate CA: what does the result mean, what Rx relevant. #mdchat | |
| mdstudent31 | RT @beRt_MD Do no harm.One can argue, doing harm by giving dx. But pt autonomy trumps all. If they want to be tested: their right. #mdchat | |
| mkmackey | Wondering how insurance would be affected with earlier diagnosis? Seems to be very personal decision of family & provider #mdchat | |
| apjonas | @EllenRichter @RichmondDoc I don't know..losing your brain is different than most cancers. A different process? or not? #mdchat | |
| ocamsrazor | pts often do not come in asking for testing...families bring in pt to be tested...then what? #mdchat | |
| westr | RT @RichmondDoc: T1 This is an issue not directly related only to Alzheimer's Disease (AD)--also an issue for any illness w/ screening but poor Rx. #mdchat | |
| RichmondDoc | T1 In PSA testing the science of the test outran the science of the treatment. Many pts harmed as a result w/o any definite benifit #mdchat | |
| EllenRichter | @PracticalWisdom T1 I feel we can learn to get better control over the fate of AD victims if we know ahead of time. Planning is key #MDchat | |
| GailZahtz | @EllenRichter I agree completely, there are too many ramifications to a pts life w/so many dx's, we can't separate out protocols. #MDChat | |
| ability4life | Agree RT @beRt_MD: #MDchat One can argue, doing harm by giving dx. But pt's auton trumps all. If they want 2 b tested. It's their right. | |
| westr | Good point! RT @EllenRichter: T1 Biggest dilemma to foreknowledge at this point is where do you go once you know? #MDchat | |
| mdstudent31 | @apjonas unless it's brain CA (primary/mets) #mdchat | |
| PracticalWisdom | But Alzheimers brings such lose of dignity, respect, that many of the other horrible diseases don't. #MDchat | |
| EinsteinMed | @apjonas Agree regarding losing your mind vs. cancer. Esp. when there are no known LT treatments. #mdchat | |
| RichmondDoc | @ability4life @EllenRichter Would be interesting to know if depression after Dx AD > after Dx for cancer. #mdchat | |
| westr | Me too! RT @EllenRichter: T1 If I had a choice, though, I guess I would want to know if I had Alzheimers (AD) #MDchat | |
| apjonas | @RichmondDoc PSA fog seems different than AD fog, much thicker and more perilous with the AD. #mdchat | |
| westr | Whoa!! GINA protects?? RT @mdstudent31: T1: Implications for insurance premiums? If ACA repealed - pre-existing condition?? #mdchat | |
| ability4life | Another reason 2 test/inform?RT @PracticalWisdom: But Alzh brings such loss of dignity, respect, many other horrible diseases don't.#MDchat | |
| RichmondDoc | T1 But remember: this test does *not* Dx AD 100%. Suggests increased risk or likelihood of Dx in the future. #mdchat | |
| EllenRichter | Good question! RT @apjonas: I don't know..losing your brain is different than most cancers. A different process? or not? #MDchat | |
| MD_chat | T1a How do/would you guide patients who want tests for AZ which can’t be reliably interpreted? #MDchat | |
| westr | RT @RichmondDoc: T1 Similar issues with Huntington's Dz. What are the ethics of Dx w/o Rx? #mdchat | |
| apjonas | @ability4life @beRt_MD Exactly. Pt is in charge until POA is in charge. #mdchat | |
| RichmondDoc | T1 This is not the same as "Your sugar is 300; you have diabetes." This is "Your test suggests that you have increased risk of AD." #mdchat | |
| beRt_MD | #MDchat Need to understand that not all patients r create equal. Some will have cognitive ability & fam support to understand/withstand dx | |
| ability4life | Good Q. RT @RichmondDoc: @ability4life @EllenRichter Would b interesting 2 know if depressn after Dx AD>after Dx for cancer. #mdchat | |
| EinsteinMed | Critical distinction. RT @RichmondDoc: T1 But remember: this test does *not* Dx AD 100%. Suggests increased future risk /likelihood #mdchat | |
| GailZahtz | Frankly, for those of us who have watched 3 and 4 generations with AD, the test isn't very relevant, though the ramifications are. #MDChat | |
| mdstudent31 | @westr protects pt or doc? And Will it really? Or will there be new interests/political $$ to create issues #mdchat | |
| ability4life | RT @westr: Me too! RT @EllenRichter: T1 If I had a choice, though, I guess I would want to know if I had Alzheimers (AD) #MDchat | |
| PracticalWisdom | How does "not knowing" impact the life of a person? Could the stress/depression cause other damage to the body/mind. #MDchat | |
| RichmondDoc | @MD_Chat T1a Find the best and most qualified pre-test and post-test counselors out there; have a few visits before drawing test. #mdchat | |
| beRt_MD | #MDchat Great convo but kids screaming. Thanks all. Will read script later. | |
| westr | RT @mdstudent31: T1: Seems "Gattaca"-like #mdchat | |
| ability4life | RT @PracticalWisdom: How does "not knowing" impact the life of a person? Could the stress/depression cause other damage to the body/mind. #MDchat | |
| mdstudent31 | T1a: This is another area where the PCMH concept truly helps - interdisciplinary professionals helping pt together #mdchat | |
| RichmondDoc | @EinsteinMed But a distinction all too easily lost or overlooked. This is part of why this is so cloudy to me. #mdchat | |
| PracticalWisdom | @beRt_MD Good Night #MDchat | |
| apjonas | @PracticalWisdom Knowing or not knowing about the increased is an individual patient problem. Each is unique in their decisions #mdchat | |
| EinsteinMed | One must also consider support systems: friends, family. Knowing early that you're likely to get ALZ and being alone = devastating. #mdchat | |
| PracticalWisdom | RT @mdstudent31: T1a: This is another area where the PCMH concept truly helps - interdisciplinary professionals helping pt together #MDchat | |
| westr | @RichmondDoc Not sure about that #mdchat | |
| ability4life | RT @EinsteinMed: One must also consider support systems: friends, family. Knowing early that you're likely to get ALZ and being alone = devastating. #mdchat | |
| ability4life | RT @apjonas: @PracticalWisdom Knowing or not knowing about the increased is an individual patient problem. Each is unique in their decisions #mdchat | |
| PracticalWisdom | @apjonas Different Strokes for Different Folks seems to be one of the answers #MDchat | |
| apjonas | @mdstudent31 Good point. Especially if you have a numbers maven and a hugger on the PCMH team. #mdchat | |
| RichmondDoc | @westr About what? I'm pretty verbose. #mdchat | |
| westr | Be the first to say i dont know. RT @mdstudent31: And Will it really? Or will there be new interests/political $$ to create issues #mdchat | |
| MDTalk | #MDchat Do no harm. One can argue, doing harm by giving dx. But pt's autonomy trumps all. If they want to... http://bit.ly/eLCfpW | |
| westr | GINA should cover an AD Dx. RT @RichmondDoc: @westr About what? I'm pretty verbose. #mdchat | |
| ability4life | RT @MDTalk: #MDchat Do no harm. One can argue, doing harm by giving dx. But pt's autonomy trumps all. If they want to... http://bit.ly/eLCfpW | |
| GailZahtz | @mdstudent31 I agree, interdisciplinary teams are essential in not only AD, but many chronic and untreatable diagnosis. #MDChat | |
| EinsteinMed | The debate on wx to give dx & how much 2 reveal will rage on. @ginakolata article: nearly 300 comments: http://nyti.ms/ghAr79 #mdchat | |
| mdstudent31 | @westr looking at it, GINA should... but does it protect the physician against non-economic damages? #mdchat | |
| RichmondDoc | @westr That's good to hear. I don't know enough about the specifics of GINA re: to situations like this. Thanks for the update. #mdchat | |
| westr | RT @RichmondDoc: @EinsteinMed Agree that pt's do have a right to know. But the testing needs to come w/ careful counseling re: what info means. #mdchat | |
| EllenRichter | With any fatal dz RT @EinsteinMed: One must consider support systems: friends, family. Knowing early and being alone = devastating #MDchat | |
| ability4life | RT @EllenRichter: With any fatal dz RT @EinsteinMed: One must consider support systems: friends, family. Knowing early and being alone = devastating #MDchat | |
| westr | Non-economic damages?? RT @mdstudent31: GINA should... but does it protect the physician against non-economic damages? #mdchat | |
| mkmackey | Education & awareness like the @ginakolata article w 300 comments http://nyti.ms/ghAr79 will likely help some families w decision #mdchat | |
| EllenRichter | Grrrr, my computer has its own plan for me tonight! LOL, I hate when it wont cooperate! #MDchat | |
| PracticalWisdom | I've seen so many lose their jobs/their health attempting for such a long time to take of their loved ones on their own.
#MDchat | |
| mdstudent31 | @westr Damages for pain, suffering, loss of companionship, consortium (not medical bills) #mdchat | |
| ability4life | RT @mkmackey: Education & awareness like the @ginakolata article w 300 comments http://nyti.ms/ghAr79 will likely help some families w decision #mdchat | |
| RichmondDoc | @westr @mdstudent31 i.e.: could the doc be sued for pain and suffering? What it the test was wrong and the Dx isn't confirmed? #mdchat | |
| westr | RT @apjonas: @mkmackey yes. Most of my pts don't want the genetic test. Don't want to know if they will be like Mom. #mdchat | |
| EllenRichter | T1 When a person w/ AD symptoms is hospitalized, it usually worsens their confusion & makes it a safety challenge #MDchat | |
| EinsteinMed | Voices of those with early Alz. Still lucid enough to know what lies ahead: Powerful, moving video series: http://bit.ly/ihaDEd #mdchat | |
| RichmondDoc | T1 Remember that this test isn't Dx; suggests increased risk. What if pts go 30 yrs after results only to find info not accurate? #mdchat | |
| PracticalWisdom | Agree! RT @westr: RT @apjonas: @mkmackey yes. Most of my pts dont want the genetic test. Dont want to know if they will be like Mom. #MDchat | |
| EinsteinMed | RT @RichmondDoc: T1 Remember that this test isn't Dx; suggests increased risk. What if pts go 30 yrs after results only to find info not accurate? #mdchat | |
| mdstudent31 | @RichmondDoc @westr and was the "Treatment" for prolonging Disease/tx earlier than normal also harmful leading to other damages #mdchat | |
| RichmondDoc | T1 Is it appropriate to give pts years and years of fear based on a test that does not make the Dx and that could prove wrong? #mdchat | |
| PracticalWisdom | RT @RichmondDoc: T1 Remember that this test isnt Dx; suggests increased risk. What if pts go 30 yrs to find info not accurate? #MDchat | |
| healthpolicygrp | RT @EinsteinMed: The debate on wx to give dx & how much 2 reveal will rage on. @ginakolata article: nearly 300 comments: http://nyti.ms/ghAr79 #mdchat | |
| mdstudent31 | No RT @RichmondDoc T1 Is it approp. to give pts years&years of fear based on test that does not make Dx and that could prove wrong? #mdchat | |
| MD_Chat | RT @RichmondDoc: T1 Remember that this test isn't Dx; suggests increased risk. What if pts go 30 yrs after results only to find info not accurate? #mdchat | |
| PracticalWisdom | RT @RichmondDoc: T1 Is it appropriate to give pts years and years of fear based on a test that does not make the Dx. #MDchat | |
| westr | !!!!! RT @PracticalWisdom: Important point from the article: “We don’t know for certain what these results mean,” Dr. Morris said. #MDchat | |
| MD_Chat | Excellent flow here...we'll move to our next topic in a moment. Can discuss re: AZ or more generally. #MDchat | |
| EllenRichter | RT @EinsteinMed: Voices of those with early Alz. Still lucid enough to know what lies ahead: Powerful, moving video series: http://bit.ly/ihaDEd #mdchat | |
| RichmondDoc | T1 These discussions are critical, but it is very important to remember how complicated/multifaceted these issues are. #mdchat | |
| ability4life | RT @RichmondDoc: T1 These discussions are critical, but it is very important to remember how complicated/multifaceted these issues are. #mdchat | |
| healthpolicygrp | RT @GailZahtz: Frankly, for those of us who have watched 3 and 4 generations with AD, the test isn't very relevant, though the ramifications are. #MDChat | |
| mkmackey | I value the experience & compassion of MDs for their patients every time I listen in to these chats #mdchat | |
| westr | RT @beRt_MD: #MDchat Do no harm. One can argue, doing harm by giving dx. But pt's autonomy trumps all. If they want to be tested. It's their right. | |
| ability4life | Ditto! RT @mkmackey: I value the experience & compassion of MDs for their patients every time I listen in to these chats #mdchat | |
| healthpolicygrp | RT @RichmondDoc: T1 This is not the same as "Your sugar is 300; you have diabetes." This is "Your test suggests that you have increased risk of AD." #mdchat | |
| EllenRichter | Great link, thanks! @EinsteinMed: Powerful, moving video series: http://bit.ly/ihaDEd #MDchat | |
| PracticalWisdom | Agree 100%RT @RichmondDoc: T1 discussions R critical, it is very important 2 remember how complicated/multifaceted these issues R #MDchat | |
| westr | RT @RichmondDoc: T1 we run the risk of a situation analogous to PSA testing for prostate CA: what does the result mean, what Rx relevant. #mdchat | |
| apjonas | @RichmondDoc The patient decides. Some get fear, some relief w/ varying expectations based on same test result. We don't decide 4 pt #mdchat | |
| ability4life | RT @apjonas: @RichmondDoc The patient decides. Some get fear, some relief w/ varying expectations based on same test result. We don't decide 4 pt #mdchat | |
| ocamsrazor | it's all about informed consent, if pts know and accept the testing, such as it is, test. #mdchat | |
| MD_chat | T2 Genetic testing: Have you had PTs who’ve used services like @23andme? What are practice considerations? #MDchat | |
| westr | Agree RT @EllenRichter: @PracticalWisdom T1 we can get better control over the fate of AD if we know ahead of time. Planning is key #MDchat | |
| RichmondDoc | @ability4life @apjonas Which brings me back to the point of the importance of pre- and post-test counseling. Key part of process. #mdchat | |
| mdstudent31 | RT @apjonas @RichmondDoc The pt decides. Some fear, some relief w/ varying expectations based on same result. We don't decide 4 pt #mdchat | |
| EinsteinMed | @EllenRichter That woman in first video is still so positive -with a sense of humor. Courageous in the face of likely doom. #MDchat | |
| westr | RT @PracticalWisdom: But Alzheimers brings such lose of dignity, respect, that many of the other horrible diseases don't. #MDchat | |
| RichmondDoc | @ability4life @apjonas The issue is this: how often is informed consent truly informed, and how often will the counseling be used? #mdchat | |
| TomPeddicord | RT @practicalwisdom: RT @RichmondDoc: T1 Remember this test isnt Dx; suggests increased risk. But what if you could reduce risk? #MDchat | |
| ability4life | RT @RichmondDoc: @ability4life @apjonas The issue is this: how often is informed consent truly informed, and how often will the counseling be used? #mdchat | |
| EllenRichter | Great point! RT @apjonas Pt decides.Some get fear,some relief w/varying expectations based on same test result. We dont decide 4 pt #MDchat | |
| MD_Chat | RT @EinsteinMed: Voices of those with early Alz. Still lucid enough to know what lies ahead: Powerful, moving video series: http://bit.ly/ihaDEd #mdchat | |
| EinsteinMed | RT @EllenRichter: Great point! RT @apjonas Pt decides.Some get fear,some relief w/varying expectations based on same test result. We dont decide 4 pt #MDchat | |
| RichmondDoc | @TomPeddicord @practicalwisdom *IF* you could reduce risk, this is one thing. As of now, no such intervention proven to exist. #mdchat | |
| mdstudent31 | T2: 23andMe.... wow Now THAT is Gattaca-like. Geez. What do physicians do w/ this? I have not encountered as student yet #mdchat | |
| ability4life | #MDChat T1 Alz video based on transcripts from dementia pts and caregivers http://www.youtube.com/watch?v=hZnLy4RJKfo&feature=related | |
| ability4life | RT @EllenRichter: Great point! RT @apjonas Pt decides.Some get fear,some relief w/varying expectations based on same test result. We dont decide 4 pt #MDchat | |
| westr | RT @MD_chat: T1a How do/would you guide patients who want tests for AZ which can’t be reliably interpreted? #MDchat | |
| RichmondDoc | T2 I haven't used a company like 23andMe. Fortunate that we have a great patient-focused Clinical Genetics dept where I work. #mdchat | |
| RichmondDoc | T2 I really worry about 23andMe. Give info, but no counseling or help understanding the results. Can be v. subtle results. #mdchat | |
| westr | RT @mdstudent31: T1a: This is another area where the PCMH concept truly helps - interdisciplinary professionals helping pt together #mdchat | |
| PracticalWisdom | @westr @MD_Chat We've got some good news and some bad news ;<- #MDchat | |
| apjonas | @RichmondDoc @ability4life informed consent flawed by human limits. Counseling likewise. "To Err is human, to forgive is not medical"#mdchat | |
| westr | RT @EinsteinMed: One must also consider support systems: friends, family. Knowing early that you're likely to get ALZ and being alone = devastating. #mdchat | |
| PracticalWisdom | RT @westr: RT @mdstudent31: T1a: Another area where PCMH concept truly helps - interdisciplinary professionals helping pt together #MDchat | |
| mdstudent31 | T2: How do you approach this though, esp. when a pt you know in your practice for a while shows "test" results #mdchat | |
| ability4life | RT @apjonas: @RichmondDoc @ability4life informed consent flawed by human limits. Counseling likewise. "To Err is human, to forgive is not medical"#mdchat | |
| RichmondDoc | T2 Services such as 23andMe are very concerning: info w/o context, could be misunderstood and lead to further harm. #mdchat | |
| GailZahtz | RT @apjonas: The pt decides....We don't decide 4 pt #mdchat <=Exactly! the pt is entitled to decide w/good information & support #MDChat | |
| RichmondDoc | @apjonas @ability4life Consent and counseling are flawed, but better than ordering a test without context and without explaining. #mdchat | |
| ocamsrazor | there is no primary prevention for AD, "TX" in pipeline aimed at tertiary prevention. #mdchat | |
| TomPeddicord | RT @ellenrichter: Great point! RT @apjonas Didn't Harvard research show pts didn't get expected fear? agree, we dont decide 4 pt #MDchat | |
| PhilBaumann | RT @richmonddoc: T2 Services such as 23andMe are very concerning: info w/o context, could be misunderstood and lead to further harm. #mdchat | |
| westr | RT @mkmackey: Education & awareness like the @ginakolata article w 300 comments http://nyti.ms/ghAr79 will likely help some families w decision #mdchat | |
| healthpolicygrp | Discussions w/ patients about end-of-life choices & options can be constructive. AD predictions w/o good tx options seem murkier. #MDchat | |
| swan5675 | RT @EllenRichter: Great link, thanks! @EinsteinMed: Powerful, moving video series: http://bit.ly/ihaDEd #MDchat | |
| EinsteinMed | T2 Some genetic tests like those to predict sudden death can serve as early warning signs or offer relief http://on.wsj.com/bhl1BG #MDchat | |
| EllenRichter | T1a If the pt can be offered support systems & counselling ahead of time, why would we deny them this benefit? Better done than not. #MDchat | |
| PracticalWisdom | Seems to me as though pt's heard things like play crossword puzzles, eat right and exercise you will not have to worry. Sad. #MDchat | |
| ability4life | RT @swan5675: RT @EllenRichter: Great link, thanks! @EinsteinMed: Powerful, moving video series: http://bit.ly/ihaDEd #MDchat | |
| RichmondDoc | @EllenRichter Not sure it's so clear-cut. I think medicine has rushed into making decisions that later turn out to be ill-advised. #mdchat | |
| westr | RT @RichmondDoc: T1 Remember that this test isn't Dx; suggests increased risk. What if pts go 30 yrs after results only to find info not accurate? #mdchat | |
| GailZahtz | In AD, chronic conditions, untreatable diagnosis, the full spectrum of team professional services is key. #MDChat #HPM | |
| ability4life | Check out #hpm RT @healthpolicygrp: Discussions w/ patients about e-0-l choices /options can b constructive. #MDchat | |
| PracticalWisdom | RT @GailZahtz: In AD, chronic conditions, untreatable diagnosis full spectrum of team professional services is key. #MDChat #HPM #MDchat | |
| EllenRichter | @RichmondDoc Oh, I'm not saying anything abt AD is clear cut, but knowledge is power. Ignorance is not always bliss. #MDchat | |
| RichmondDoc | @EllenRichter If a test can't actually tell anything much for sure, needs very careful interpretation. How to explain relative risk? #mdchat | |
| westr | RT @MD_chat: T2 Genetic testing: Have you had PTs who’ve used services like @23andme? What are practice considerations? #MDchat | |
| healthpolicygrp | RT @EinsteinMed: One must also consider support systems: friends, family. Knowing early that you're likely to get ALZ and being alone = devastating. #mdchat | |
| apjonas | T2 Geneology a good use for 23&me type sites. Genomics VERY FLAWED medically, dangerous for pts. But I will "spit" in cup for $99. #mdchat | |
| hvto | RT @GailZahtz: In AD, chronic conditions, untreatable diagnosis full spectrum of team professional services is key. #MDChat #mdchat | |
| RichmondDoc | @EllenRichter But I don't think knowledge is inherently power. PSA testing for prostate has not proven any consistent benefit. #mdchat | |
| mdstudent31 | @apjonas $99 for gym membership may be more useful #mdchat | |
| GailZahtz | @RichmondDoc Is it the test in particular that concerns you or the early possible diagnosis and its ramifications to the pt? #MDChat | |
| mkmackey | T2 IMO a risk for patients is the unpredictability of results from testing like 23andme #mdchat | |
| EinsteinMed | Curious. Of the MDs on this chat - have any had to tell a pt they likely have Alz? How did you handle? #MDchat | |
| miller7 | @RichmondDoc @EllenRichter Couldn't resist - good academic "relative risk" article. #MDCHAT | |
| RichmondDoc | @EllenRichter I'm not saying we should deny info or knowledge, but I think it needs be very carefully considered as to how/when/why #mdchat | |
| westr | Teaching it to our med students now. RT @mdstudent31: T2: 23andMe.... wow Now THAT is Gattaca-like. Geez. What do physicians do.. #mdchat | |
| miller7 | Whoops @RichmondDoc @EllenRichter Couldnt resist - good academic "relative risk" article. http://bit.ly/gvNQak #MDCHAT | |
| RichmondDoc | @GailZahtz You refer to the 23andMe test, or the other testing we've been discussing? At the end of the day: impact on pt is key. #mdchat | |
| mdstudent31 | @westr in clinical situations? with SPs? That would be very helpful! #mdchat | |
| ability4life | Check out this article http://tinyurl.com/2bvhnxj RT @RichmondDoc: @EllenRichter meds can rush into dec that turn out 2 b ill-advsd. #mdchat | |
| MD_Chat | Examples of what's great about these chats are exchanges b/w @EllenRichter & @RichmondDoc. This is how our wisdom advances :) #MDchat | |
| westr | Doubt they test the same things. RT @RichmondDoc: T2 Fortunate that we have a great patient-focused Clinical Genetics dept. #mdchat | |
| RichmondDoc | I will stipulate that some pts want early info. But what if we can't really offer any early info that provides value or meaning? #mdchat | |
| EllenRichter | @RichmondDoc I cant agree more. Health care professionals need to know their pts & know how to approach them w/ info such as AD test #MDchat | |
| apjonas | @mdstudent31 curiosity and a cousin who did test compel me 2 be a good cuz and spit my DNA in $99 cup for 23&me 2 learn 4 my pts(?) #mdchat | |
| RichmondDoc | @westr Maybe not. Often they don't test at all. #mdchat | |
| MD_Chat | OK, folks - our hour is coming to an end ;( But let's have your thoughts, dreams, holiday wishes, etc. #MDchat | |
| westr | No, as a med elective. SP wud b great! RT @mdstudent31: @westr in clinical situations? with SPs? That would be very helpful! #mdchat | |
| mdstudent31 | "Baldness"?? So, are men going to take meds to prevent before happening and suffer sides. Probably already happening! #mdchat |
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