Patient Perceptions Associated with Chemotherapy-Induced Peripheral Neuropathy

with Cindy Tofthagen, PhD, ARNP, AOCNP®

2010-10-27 12:00:55 Stephanie@ons. Hi Cindy!
2010-10-27 12:01:13 cindytofthagen Hi Stephanie, how are you?
2010-10-27 12:01:42 Stephanie@ons. I am doing well. How about you? Hoping we get some takers today.
2010-10-27 12:16:33 Julie W. Sorry I'm late
2010-10-27 12:16:38 Stephanie@ons. HI Julie! Welcome to the Chat.
2010-10-27 12:16:52 Stephanie@ons. Have you read the article?
2010-10-27 12:16:56 Julie W. Thanks
2010-10-27 12:17:20 Julie W. I wish I could tell you yes
2010-10-27 12:17:22 cindytofthagen Hi Julie
2010-10-27 12:17:41 cindytofthagen its ok that you haven't read it.
2010-10-27 12:18:07 cindytofthagen We can talk about peripheral neuropathy in general
2010-10-27 12:18:33 cindytofthagen What setting do you work in?
2010-10-27 12:18:43 Julie W. I am scanning it now
2010-10-27 12:18:52 Julie W. Neuro-oncology outpatient
2010-10-27 12:19:18 Julie W. We also serve as neurology consulting service for the rest of the institution
2010-10-27 12:19:42 cindytofthagen Do you get referrals for CIPN?
2010-10-27 12:19:48 Julie W. Yes, we do
2010-10-27 12:20:42 cindytofthagen I thought that might be the case.
2010-10-27 12:21:59 cindytofthagen As you can see from the article I interviewed 14 patients in quite a bit of detail about their experiences with neuropathy.
2010-10-27 12:22:25 Julie W. I am reading the interview questions now
2010-10-27 12:22:44 Julie W. Very detailed
2010-10-27 12:23:13 cindytofthagen I learned a lot about how profoundly their quality of life was impacted by CIPN
2010-10-27 12:24:42 Julie W. Were the patients most troubled by the pain or loss of manual dexterity and balance? (I am reading the article so may come on the answer)
2010-10-27 12:26:14 cindytofthagen Both but I think they were most bothered by the impact on their performance status
2010-10-27 12:28:21 cindytofthagen the catch is that sometimes as clinicians we tend to focus more on pain, probably because we feel like we can treat that where we can't really fix the manual dexterity, balance or other performance related aspects'
2010-10-27 12:28:54 Julie W. I think that your point about providing anticipatory guidance is very relevant.
2010-10-27 12:29:05 Julie W. It will be up to nurses to do that.
2010-10-27 12:29:14 Stephanie@ons. Welcome to the chat Steph199!
2010-10-27 12:29:48 Julie W. Hi Steph
2010-10-27 12:29:52 Stephanie@ons. Please feel free to ask questions related to peripheral neuropathy to Cindy.
2010-10-27 12:29:59 cindytofthagen I agree
2010-10-27 12:30:07 cindytofthagen Hi Steph
2010-10-27 12:30:17 steph199 Good morning
2010-10-27 12:30:30 Julie W. We don't routinely prescribe agents that cause CINP
2010-10-27 12:31:06 Julie W. But, we do routinely refer to PT/OT when a patient is referred to us for CINP if function is adversely affected
2010-10-27 12:31:29 cindytofthagen Do you primarily treat brain tumors?
2010-10-27 12:31:37 Julie W. We find that patients receive a lot of benefit and satisfaction.
2010-10-27 12:31:56 cindytofthagen I have found that in my own practice too.
2010-10-27 12:32:21 Julie W. Yes, Primary brain and spinal cord tumors, and leptomeningeal disease.
2010-10-27 12:32:38 Julie W. and a lot of CINP
2010-10-27 12:33:30 cindytofthagen We are working on a proposal for a study using a strength and balance training to treat CIPN. ONS generously provided funding through a research mentorship to develop that proposal
2010-10-27 12:34:42 Julie W. Wonderful idea. We find that PT is probably at least as much help as Lyrica, etc. in helping patients to function.
2010-10-27 12:34:58 cindytofthagen I am very excited about it and get to meet with experts from exercise physiology and physical therapy to develop the best program
2010-10-27 12:35:17 Julie W. OT is very helpful for providing tools to assist with ADL's when manual dexterity is affected.
2010-10-27 12:35:51 Julie W. It does sound like it should have a high impact.
2010-10-27 12:36:24 cindytofthagen I am not convinced that Lyrica or Neurontin have any benefit outside of pain control. Would you agree?
2010-10-27 12:37:16 Julie W. I do agree. However, pain control is important to function, I think. Certainly too overall quality of life.
2010-10-27 12:38:21 Julie W. Do you feel that often function is inhibited by pain, maybe preventing a patient from getting the full benefit of PT?
2010-10-27 12:39:04 cindytofthagen Absolutely but I also see a lot of patients that don't have pain but still have significant functional impairment.
2010-10-27 12:39:14 Julie W. Oh, absolutely
2010-10-27 12:40:01 cindytofthagen You probably see less of them in your clinic
2010-10-27 12:40:13 Julie W. PNP came home to me recently in my father
2010-10-27 12:40:35 Julie W. Not CINP but due to a carpal tunnel syndrome left unaddressed for way too long
2010-10-27 12:41:01 Julie W. We went to eat seafood one night, and he could not peel his shrimp.
2010-10-27 12:41:30 Julie W. It was very upsetting and embarrassing for him when I had to peel his whole plate of boiled shrimp for him.
2010-10-27 12:41:30 cindytofthagen Sorry to hear that Julie, whatever the cause, neuropathy can be devastating
2010-10-27 12:41:47 Julie W. So, I have a new empathy for my patients.
2010-10-27 12:42:36 cindytofthagen I can imagine how embarrassing that must have been for him
2010-10-27 12:42:46 Julie W. When do you think that your new study will be starting?
2010-10-27 12:43:58 cindytofthagen Not for quite a while. We will submit the proposal to NIH in June and if it gets funded, we can start collecting data about 9 months later.
2010-10-27 12:44:33 Julie W. Another referral that we find helpful is a home safety evaluation by a home health service. Even if they do not require other home health services
2010-10-27 12:45:39 cindytofthagen In the meantime, we are doing at some work with survivors of colorectal cancer previously treated with oxaliplatin to get a better idea of the prevalence of neuropathy and its associations with depression, sleep disturbance, and decreased quality of life in that population.
2010-10-27 12:46:09 Julie W. Interesting
2010-10-27 12:46:28 cindytofthagen I was discussing the home safety evaluation today with one of my students.
2010-10-27 12:47:09 cindytofthagen She just completed her thesis looking at nurses assessments of CIPN
2010-10-27 12:47:27 Julie W. Cindy, I have really enjoyed our chat. Thank you for being available.
2010-10-27 12:47:38 Julie W. I have to sign off now.
2010-10-27 12:47:53 Stephanie@ons. Thanks for joining us and the discussion Julie.
2010-10-27 12:47:57 Julie W. And, I did read your article "on the fly" while we talked.
2010-10-27 12:48:01 Julie W. Thanks again.
2010-10-27 12:48:07 cindytofthagen She is a big supporter of the home safety evaluation. Take care Julie. Thanks for participation; I have enjoyed it as well.
2010-10-27 12:48:25 Stephanie@ons. Thank you Cindy!
2010-10-27 12:48:46 cindytofthagen That was fun!
2010-10-27 12:48:50 Stephanie@ons. I will let you know about APN.
2010-10-27 12:49:37 cindytofthagen Ok, Thanks for everything Stephanie. You are a pleasure to work with and I look forward to meeting you in person!
2010-10-27 12:49:54 Stephanie@ons. You too! See you in a few weeks.