Checklists for newly diagnosed Stage IV patients?

[Peregrine]

I'm wondering whether or not it might be a good idea to have a special, structured checklist that newly diagnosed Stage IV patients could use just after diagnosis to make sure that everything is in order from a medical standpoint. This would be a checklist to insure that certain important things are not overlooked and do not "fall between the cracks". What do you think?

Are there any Stage IV patients out there who know about the existence of any such checklists? If so, please post information on how to access these resources.

Thank you.

[ginabeewell]

My only additional thought here is that it might make sense to have a set of checklists, so that it’s clear what needs to happen in the first weeks vs months. It can be overwhelming to get so much advice right at the beginning!

[prayingforccr]

Let’s brainstorm, then organize………..I would make it a point to 1) get full diagnosis (stage, type, location, mutations) 2) check to see if there are any clinical trials 3) identify what insurance allows in terms of treatment center

Feel free to add items from here.

[Rock_Robster]

If a more advanced diagnosis (eg late stage III or stage IV):

Full staging including PET-CT.

Biomarker/genomics testing, including MSS/MSI and targetable mutations.

Baseline bloods including CEA and CA19-9.

Comprehensive treatment plan developed by multidisciplinary team (not just first step). Should include direct surgical consult prior to initiating treatment.

Second opinion on treatment plan (at an NCI-designated centre if in the US).

If indicated for pain / side effects - palliative care consult.

Advanced Care Planning / living will / medical power of attorney (or whatever it is where you are).

Allied health consult - psychology/social work, dental, physio/prehab, chemo or wound care/continence nurse, etc.

Financial plan - including insurance coverage and access to necessary financial support, disability, etc.

[Peregrine]

Thanks to everyone for the comments, all of which are useful. As prayingforccr suggests, at this point in time we are probably at the early stages of "brainstorming" where we are collecting different ideas for analysis and classification into a small number of categories that will eventually lead to a bullet list of points that can finally lead to one or more checklists.

There are some issues or concerns with all of this, however.  As Gina has already suggested, there is the problem of TMI (Too Much Information) where many newly diagnosed patients are already stressed to the limit and up to their ears with Google-search information to the point that they cannot deal with a long, comprehensive list of concerns that urgently need to be dealt with.  So, this amounts to the dilemma of choosing between a long, comprehensive checklist and a much shorter one that newly diagnosed patients will actually be able to handle.

Perhaps we could first develop a comprehensive list and then decide how to prioritize it or fragment it into a smaller number of high-priority points that could be more easily addressed.

 I'm not sure exactly how to deal with this. My own preference is to develop a more-or-less comprehensive master checklist and then extract subsets of this master checklist to be used for special purposes.

The main "special purpose" that I have in mind is to have a focused checklist that will help guarantee that all of the data elements, consultations and verifications necessary for developing a truly  personalized Stage IV treatment plan are completed before any sort of treatment intervention is ever launched.  This is to insure that the necessary thinking is done up front in order to make sure that the patient is not just routinely scheduled for a one-size-fits-all palliative standard-of-care (SOC) regimen that may turn out not to be the best possible regimen to guarantee a favorable treatment outcome in their case.

And as Rob has suggested, the initial treatment planning must be thorough and multidisciplinary in nature and must lay out, in advance, all of the sequential elements of the plan, specifying the details of what kinds of interventions (chemo, radiation, surgery) are planned and in what order, with provisions for a Plan "B" or Plan "C" in case the preferred Plan "A" fails to achieve the desired results. This multi-level plan must be based on as much relevant diagnostic data that can possibly be collected and verified in the first few weeks so as to insure that the treatment is based on complete, detailed staging information.

Right now I am in the process of translating into English and adapting a 12-point cancer checklist (published earlier this year in Europe) for my own use here as a kind of boilerplate draft to start with. Actually, the European checklist has quite a bit of overlap with the list that Rob has already given, but it needs to be adapted to the American colorectal cancer context if it is ever going to be useful in the U.S.


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