#JHSJC

October #JHSJC Transcript

October’s #JHSJC event was tremendous! Thank you to all who participated both in North America and Europe! We discussed the following articles:

  1. Limited Fasciectomy Versus Collagenase Clostridium histolyticum for Dupuytren Contracture: A Propensity Score Matched Study of Single Digit Treatment With Minimum 5 Years of Telephone Follow-Up

2. A Standard Set for Outcome Measurement in Patients With Hand and Wrist Conditions: Consensus by the International Consortium for Health Outcomes Measurement Hand and Wrist Working Group

Feel free to continue the conversation below in the comments! And please check out previous #JHSJC transcripts (please scroll to the bottom of the page).

J Hand Surg Am- ASSH @JHandSurg:
The October #JHSJC is happening now! Let’s get the discussion going!

Brent Graham @BgTalkinman:
Welcome to the Oct chat! Article summaries are at jhsfocus.org/jhsjc. Let’s start with the 1st paper on #CCH vs #fasciectomy #jhsjc
Let’s start with the methods. Phone FU was used. What impact, if any, does that have on the validity of the findings? #jhsjc

Warren @whammert:
Shared decision making – smaller procedure more likely to require further tx. Bigger investment with less need for further tx #jhsjc

Dafang Zhang @DafangZhang to @BgTalkinman and @whammert:
Thank you and totally agree @whammert This is the shared decision we have with patients, durability of surgery versus ease of recovery of collagenase #jhsjc

Warren @whammert to @BgTalkinman:
Still valid and gives us something, but the patient perception of recurrence is hard to quantify. further procedure ok #jhsjc

Brent Graham @BgTalkinman to @whammert:
Can you expand on that? #CCH is more expensive (in other studies) and seems less effective by pt perception. #jhsjc

Warren @whammert to @BgTalkinman:
IF a patient wants a less involved procedure with less down time and accepts recurrence higher, it can be used #jhsjc
But harder to justify from a cost stand point, which is why some countries do not have it I would think #jhsjc

Steven Haase @schaase:
Better question – if re-intervention and recurrence are more common (as I tell patients), why do they always insist on collagenase? #jhsjc
Patient preference is driving this in my practice – not cost (insurance covers both treatments in most cases). #jhsjc

Warren @whammert to @schaase:
Marketing? Patients often come asking for this and I discuss all options safe for their cord and then they decide. #jhsjc

Steven Haase @schaase:
Agree @whammert. Patients come in asking for the John Elway treatment. #jhsjc

UVAHandSurgery @HandUva:
Does the character of the cord in terms of MCP vs. PIP or cord complexity / size affect your offerings to patient? #jhsjc

Warren @whammert to @HandUva:
definitely as I am not comfortable with PIP and distal cords. I can refer if they are looking for someone for that #jhsjc

UVAHandSurgery @HandUva:
This study was predominantly isolated PIP contractures, which in my practice affects treatment selection #jhsjc

Warren @whammert to @HandUva:
I am a novice at collagenase and don’t want to cause a bigger problem – tendon rupture, but just my lacking experience #jhsjc

Steven Haase @schaase to @HandUva:
Yes! CCH for thick, palmar cords. NA for thin, palmar cords. Fasciectomy for distal/PIP cords w/o a good needle target. #jhsjc

Brent Graham @BgTalkinman to @whammert:
What about the cost? It’s clearly higher as shown here: https://www.jhandsurg.org/article/S0363-5023(18)31491-6/fulltext

Warren @whammert to @BgTalkinman:
This is part of why I rarely use it. Lack of experience and increased cost for similar outcome #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman and @whammert:
It is hard to defeat NA in terms of cost! Even with the recurrence rate which has changed my practice #jhsjc

UVAHandSurgery @HandUva:
Do you think that patient perceived recurrence correlates 1:1 with patient satisfaction or perceived hand function? #jhsjc

Steven Haase @schaase to @BgTalkinman:
But cost does not seem to influence my patient’s decisions. See: https://pubmed.ncbi.nlm.nih.gov/31517517/ #jhsjc

Warren @whammert to @HandUva and @BgTalkinman:
Agree, but I am not super comfortable with this for PIP contractures either. Still like fasciectomy #jhsjc

UVAHandSurgery @HandUva to @schaase and @BgTalkinman:
Is it our responsibility OR the patients to offer cost / value based responsible plans? #jhsjc

Brent Graham @BgTalkinman:
If it costs more and is less effective, even as this study, shows by pt perception, why is it still thought an option? #jhsjc

Warren @whammert to @HandUva, @schaase, and @BgTalkinman:
I think cost comes into play mostly when there are smilar procedures with different costs-doc shares #jhsjc

Brent Graham @BgTalkinman to @schaase:
I’m not sure this is a pt choice issue if there isn’t equipoise #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
This is why I no longer offer Xiaflex. NA or surgery only. NA is also only 1 visit versus 2 for Xiaflex. #jhsjc

Steven Haase @schaase to @BgTalkinman:
Patients are taking the less-rehab, less-time-off-work, less-appointments choice. Less cost to them? #jhsjc

Warren @whammert to @schaase and @BgTalkinman:
Interesting we as surgeons think about decreasing cost. Hard to imagine insurance rewarding that. #jhsjc

Dafang Zhang @DafangZhang to @schaase and @BgTalkinman:
I think it’s an important societal consideration. I find it difficult to bring cost into shared decision making if patients do not feel that burden #jhsjc

UVAHandSurgery @HandUva to @schaase and @BgTalkinman:
You can make that argument for collagenase vs. surgery, but not for NA vs. either of those options #jhsjc

Steven Haase @schaase to @HandUva:
I have been doing more & more NA, knowing that someday someone will take CCH away. But patients/consumers still want it. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
When there is equipoise pt choice dictates rx. in the absence of that we do have a responsibility IMO #jhsjc

UVAHandSurgery @HandUva to @schaase:
We need to get Bradley Cooper to do an ASSH sponsored add for NA! #jhsjc
Per Dups website celebs with Dupuytrens — Bill Murray, Chelsea Handler, and many, many others – in all walks of life. #jhsjc

Steven Haase @schaase to @HandUva:
I think you are onto something there… #jhsjc

Brent Graham @BgTalkinman to @DafangZhang and @schaase:
I agree entirely with that #jhsjc

Brent Graham @BgTalkinman to @HandUva and @schaase:
Well #NA doesnt cost but it is not much more effective than #CCH https://www.jhandsurg.org/article/S0363-5023(16)30817-6/fulltext #jhsjc

Warren @whammert to @BgTalkinman, @HandUva, and @schaase:
Similar outcomes and risks, so lower cost should win #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman and @schaase:
Agree. But if recurrence presented as an expected outcome and not a comp no big deal. #jhsjc

Brent Graham @BgTalkinman to @HandUva and @schaase:
It shouldn’t be an expected outcome in an effective Rx, eg #fasciectomy. #jhsjc

Brent Graham @BgTalkinman:
How convincing is the use of propensity matching in this study? #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Reduced sample size significantly and biased towards PIP #jhsjc

Dafang Zhang @DafangZhang to @BgTalkinman, @HandUva, and @schaase:
Very interesting point. I def counsel dup is genetic disease and question is when, not if, it’ll recur after treatment. I think this sets up the shared decision making discussion of fasciectomy vs collagenase/NA nicely #jhsjc

Steven Haase @schaase to @BgTalkinman:
I don’t disagree, but I think recurrence does not deserve so much emphasis. None of these interventions is a cure. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
I agree that it reduces the sample size but isn’t it higher quality data if the risk of confounding is also reduced? #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
The other issue I was confused with is what if a different finger had a recurrence or treatment? #jhsjc

Brent Graham @BgTalkinman to @HandUva:
That is not recurrence – that is disease extension. This is a major issue in all literature on Dupuytren rx. We try very hard to keep recurrence and extension separate in @JHandSurg papers. #jhsjc

Dafang Zhang @DafangZhang to @HandUva and @BgTalkinman:
Thx @HandUva, that would not have been counted as a recurrence/reintervention in this study. We focused only on treatment of a single digit #jhsjc

Brent Graham @BgTalkinman to @schaase:
Do you not think of excision of the affected palmar fascia, appropriately rehabbed, essentially curative? Disease extension is something else – it’s not recurrence #jhsjc

Avi Giladi @theaviram to @BgTalkinman and @HandUva:
improves quality in answering the specific question for the specific condition. #jhsjc

Brent Graham @BgTalkinman to @DafangZhang and @HandUva:
This is an very, very important issue that has undermined a lot of the lit on Dupuytren rx in the past #jhsjc

Brent Graham @BgTalkinman:
Let’s move in the to article about the #ICHOM standard set of hand outcomes. #jhsjc

UVAHandSurgery @HandUva:
I’m interested to hear thoughts on the other article. It was provocative #jhsjc

UVAHandSurgery @HandUva:
Regarding value based health care — at what point do these metrics become requirements with us publishing them! #jhsjc

Brent Graham @BgTalkinman:
I think the methods used here are just about beyond reproach – we will be discussing this with the European colleagues tomorrow. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Really? #jhsjc

Brent Graham @BgTalkinman:
If the same approach had been used with North Amer surgeons and researchers, would the same outcome have resulted? #jhsjc

UVAHandSurgery @HandUva:
Do the methods produced by the results generate an approach that will affect practice? #jhsjc

Brent Graham @BgTalkinman:
Yes! Extensive literature research, consensus methods. I don’t see how it could have been more rigorous. #jhsjc

UVAHandSurgery @HandUva:
I don’t question the rigor. I question the results and the implications of publishing this? #jhsjc

Brent Graham @BgTalkinman to @HandUva:
This isn’t about affecting practice. – yet. It’s about standardizing how we report outcomes in a research setting. #jhsjc

Avi Giladi @theaviram to @BgTalkinman:
incredibly rigorous. but it undervalues the patient perspective relative to other stakeholders #jhsjc

Brent Graham @BgTalkinman to @theaviram:
I don’t agree. Almost all of the scales have had a lot of patient input Patients advised them in their consensus meetings. #jhsjc

Avi Giladi @theaviram to @BgTalkinman:
yes, but those involved patients are not reflective of most patients. literacy, time, etc limit use of PROMs #jhsjc

UVAHandSurgery @HandUva:
Should we strive for what is the minimum amount of time to get the maximum power for comparison? #jhsjc
Also, did not take into account the effect of screening patients for 20 minutes just for research purposes? #jhsjc

Brent Graham @BgTalkinman to @HandUva:
It brings into sharp contrast an approach focusing on what’s feasible ie PROMIS vs the data richness of other approaches #jhsjc

Brent Graham @BgTalkinman to @HandUva:
High quality research takes effort! #jhsjc

UVAHandSurgery @HandUva:
Individually yes. However, when you combine multiple approaches on one patient creates survey fatigue. #jhsjc
Plus, the article cites value based care as a main outcome. Insurance companies requiring this testing for payment is scary #jhsjc
This is also not practical for non-academic hand surgeons, no? #jhsjc

Brent Graham @BgTalkinman:
Correct! This is a research tool that potentially provides much higher quality data than PROMIS. #jhsjc

Brent Graham @BgTalkinman:
It’s the conflict btw lower quality, easily obtained data or richer data collected with much more effort. #jhsjc

Warren @whammert to @BgTalkinman and @HandUva:
But you will receive very few submissions with this rigor. Not feasible for most US hand surgeons #jhsjc

Brent Graham @BgTalkinman to @whammert:
I’m not sure about that. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
Listen to the podcast (https://www.jhandsurg.org/pb/assets/raw/Health%20Advance/journals/yjhsu/October_2021.mp3). The EMR advises which scales to use based on dx and embeds the right scales #jhsjc

UVAHandSurgery @HandUva:
Even with that the trauma bank takes over 40 min to complete #jhsjc

Brent Graham @BgTalkinman to @HandUva:
I’m not sure what you’re referring to. The paper didn’t report times for completion. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Figure 4 does show that the time for the severe trauma is over 40 min. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
Fig 4 shows the timeline over which the scales are applied – in months. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Time in minutes is recorded under each box in my version. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
You are correct. isn’t the max 30 minutes? #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Up to 46 minutes in severe trauma. #jhsjc

UVAHandSurgery @HandUva:
You will be missing publishing articles that may effect patient care by raising the bar higher than achievable by most hand surgeons #jhsjc

Brent Graham @BgTalkinman to @HandUva
I don’t understand. We will always be interested in publishing articles that report high quality data. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
Is there a head to head comparison with PROMIS that I am missing? #jhsjc

Warren @whammert to @BgTalkinman and @HandUva:
I don’t think PROMIS as it has a different focus – biopsychosocial model rather than region specific #jhsjc

Brent Graham @BgTalkinman to @HandUva:
No. PROMIS is focused on feasibility but has important ceiling effects. The UE scale is 30-56. #jhsjc

Warren @whammert to @HandUva and @BgTalkinman:
They chose not to include PROMIS domains #jhsjc

UVAHandSurgery @HandUva:
The rigor is great. If it is not practical or generalizable, then what is the point. Is this gate keeping research? #jhsjc

Brent Graham @BgTalkinman to @HandUva:
That’s an unfortunate take on excellent work. It was fully peer-reviewed, like all our papers. #jhsjc

Brent Graham @BgTalkinman to @whammert:
The choices made were on the basis of consensus among an international panel that included patient advisors. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
No. It is a provocative manuscript. Just don’t think a consensus group equals gospel if it isn’t practical. #jhsjc

Warren @whammert to @BgTalkinman:
yes – discussed PROMIS and chose not to include. #jhsjc

Brent Graham @BgTalkinman to @whammert:
I don’t recall that in the article. #jhsjc

Warren @whammert to @BgTalkinman:
Listed PROMIS domains in some of the tables from what I recall #jhsjc

Brent Graham @BgTalkinman to @whammert and @HandUva:
The bottom line is that there is no free lunch. The collection of high quality data requires effort – and time. #jhsjc

Avi Giladi @theaviram to @BgTalkinman, @whammert, and @HandUva:
agree PROM rigor+quality = time. but if many patients won’t participate, is it truly quality? #jhsjc

UVAHandSurgery @HandUva:
Yes. I totally agree. Could the group be asked to develop feasible suggestions for practicing surgeons to track outcomes? #jhsjc
Like for nerve problems, the following would be a reasonable minimum which could be collected in x minutes #jhsjc

Brent Graham @BgTalkinman to @HandUva:
Many of the scales in this standard set are ones commonly used -MHQ DASH etc. They didn’t make any new scales. #jhsjc

UVAHandSurgery @HandUva to @theaviram, @BgTalkinman, and 2 others:
True. Agree. Survey fatigue is a real thing. #jhsjc

Avi Giladi @theaviram to @HandUva:
this article helps, but also need consensus that all hand clinics can use so we get on same page without burden to patients #jhsjc

Brent Graham @BgTalkinman to @whammert:
You are right – among many other scales like DASH MHQ etc. Ones we see in almost all submissions. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
The point was to identify a standard set of outcomes. Whether a “minimum” would be better may depend on the question. #jhsjc

Brent Graham @BgTalkinman to @HandUva:
That is what this study did and included patients, researchers, therapists as well. #jhsjc

Brent Graham @BgTalkinman to @theaviram and @HandUva:
Consensus is what this achieved. I agree that implementation is a challenge but it’s not insurmountable. #jhsjc

UVAHandSurgery @HandUva to @BgTalkinman:
An impressive consensus review of available metrics. Look forward to seeing the practical application #jhsjc

Brent Graham @BgTalkinman to @theaviram and @HandUva
You should join the discussion tomorrow. The creators will be there. 4pm EDT right here. #jhsjc

Brent Graham @BgTalkinman
Excellent discussion! These are important topics. We are back tomorrow at 4 pm EDT and next month Nov 9, 9 pm EST #jhsjc

UVAHandSurgery @HandUva:
Thanks all. Appreciate the hot takes! #jhsjc

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ryckie Wade @ryckiewade:
Welcome to Oct ’21 JHS Journal Club –> the best way to follow/contribute is to visit tchat.io and enter #jhsjc

Brent Graham @BgTalkinman:
For anyone interested in what was said about this paper in last night’s session be sure to check the hashtag. It was a raucous event! #jhsjc

Brent Graham @BgTalkinman
Many issues were brought up by your North Am colleagues last night. The methods are excellent IMO. Is the output generalizable? #jhsjc

Brent Graham @BgTalkinman to @ryckiewade:
By generalizable I mean is this a system that can find traction outside of Europe? #jhsjc

Ryckie Wade @ryckiewade:
@BAHTHandtherapy @SarahTu09698471 @mrjnrodrigues @conrad_harrison @JCRWormald @jennifercelane @ruudselles @StirlingOrtho @DominicFurniss @dargie_susan @ruudselles @diving_digits @DrJamesKKChan @StirlingOrtho @Kavit_Amin @BrochaSternOT

What are you thoughts? 🤔

Brent Graham @BgTalkinman:
The main concern is that the “standard set” approach, while more comprehensive, clearly has issues of feasibility. Views? #jhsjc
Your North Amer colleagues just about uniformly felt that this would not be feasible because of the burden placed on pts. #jhsjc

Ryckie Wade @ryckiewade to @ruudselles and @ReinierFeitz:
What’s the position of the @XpertClinic regarding this set of core outcomes?

Brent Graham @BgTalkinman:
One thought it would lead to “gate keeping research” bc of its complexity. #jhsjc
How is the burden on pts managed so that they participate in clinical research? #jhsjc
It may be true that this will amount to an academic exercise without practical application if the issue of pt burden can’t be managed #jhsjc

Brent Graham @BgTalkinman:
Maybe none of the investigators are here to respond to this, which is a shame bc this work has caused a stir regarding this issue #jhsjc
Silence…I’m sure that doesn’t mean there are no views to share. #jhsjc

Ryckie Wade @ryckiewade:
I am a novice re: #PROMs research but I was surprised to SO MANY outcomes measures being captured simultaneously…. overlap? burden? #jhsjc

The standard nerve outcome set advocates 3 tools which (to me) appear to generate overlap – #BCTQ + #MHQ + another e.g. #IHaND… #jhsjc

Brent Graham @BgTalkinman to @ryckiewade:
In the podcast, (https://www.jhandsurg.org/pb/assets/raw/Health%20Advance/journals/yjhsu/October_2021.mp3) @WoutersRobbert described how their EMR suggests the right scales for a given dx #jhsjc

Paul Stirling @StirlingOrtho to @ryckiewade:
Great concept, robustly executed. Re burden, there are 2 considerations.

  1. Patient burden and effect of dropout (we @fifehandclinic have a 55% follow-up rate using only QuickDASH EQ5D normal hand score and net promoter score at 1 year…)
  2. Burden on institutions. Some may struggle to achieve this without dedicated research support, especially once goniometry is involved. This may price smaller units out of the research market.

Ryckie Wade @ryckiewade to @StirlingOrtho:
Thanks, good point. Would this ever be possible in routine NHS care? Would this help fix the goniometry problem? https://www.jshoulderelbow.org/article/S1058-2746(11)00278-3/fulltext

Paul Stirling @StirlingOrtho to @ryckiewade:
Its a great idea and I would love to think its possible although it seems a way off at present. What do you think?

Fifevirtualhandclinic @fifehandclinic:
Fife hand clinic used digital goniometry for the elbow many years back, with improved intra and inter observer error. Used a mechanical setup to standardise angle of photo and forearm position and rotation. Elbow is easy – hand is a nightmare.

Homo mediocritus @homomediocritus to @ryckiewade:
Burden is a big problem in real world.

Ryckie Wade @ryckiewade to @homomediocritus:
Agreed, this is potentially a problem in some populations e.g. young / trauma.
The postulated total time for completing most core outcome set is ~20mins +/- a few. In my view, this isn’t much/long every few months for those enrolled in research, but I could be waaay off. #jshjc

Homo mediocritus @homomediocritus:
Indeed. MHQ is not very patient friendly and I worry about it being used in settings without time and staff to help.

Ryckie Wade @ryckiewade to @homomediocritus:
Where globally do you work? Would you consider deploying this core outcome set in your research projects +/- clinic? #JHSJC

Homo mediocritus @homomediocritus:
I think it’s too burdensome for regular clinical practice. For research it’ll have some influence but only some.

Ryckie Wade @ryckiewade to @ReinierFeitz, @ruudselles, and @XpertClinic:
Awesome! Only the Netherlands is this efficient 👏💪

Brent Graham @BgTalkinman to @ryckiewade:
Well #IHand was recently found to be the most burdensome with no advantage over PROMIS #jhsjc
What you have chosen for the “PSFS, patient-specific functional scale” in your nerve stream? #JHSJC
My guess is that as a 1st iteration, some adjustments will be required to see this implemented but the concept is commendable #jhsjc

Gurdas V. Singh S. R. @Gurdas2209:
For the treatment options, am I correct in saying that providing no treatment wasn’t factored in as an option? #jhsjc

Brent Graham @BgTalkinman to @Gurdas2209:
The exercise wasn’t about specific rx but rather measuring the effect of rx, presumably including “no rx” #jhsjc

Gurdas V. Singh S. R. @Gurdas2209 to @BgTalkinman:
Thanks, but I think we can’t presume that, given that they haven’t included that in their flowchart. #jhsjc

Gurdas V. Singh S. R. @Gurdas2209 to @BgTalkinman:
Additionally, I don’t really see any transparency regarding recruitment to these working groups. Selection? #jhsjc

Brent Graham @BgTalkinman to @Gurdas2209:
Well, they are outcome measures and outcomes result from rx , even “no treatment” #jhsjc
1 way to improve the feasibility might be using the legacy scales as CATs. That is a valid approach #jhsjc
The 1st paragraph under Methods describes that. #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @ryckiewade:
Jumping in late! Agreed about burden/overlap. But like @BgTalkinman said the effort is commendable & aligns with where we need to go in terms of systematic large-scale collection. Some really thoughtful issues raised last night! #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @ryckiewade and @BgTalkinman:
Another issue is the siloed development of these standard sets (great discussion here: pubmed.ncbi.nlm.nih.gov/34488730/) – has advantages but also raises issues w/ multimorbidity & comparisons btwn service lines. PROMIS has limitations but does support that more universal metric. #jhsjc

Ryckie Wade @ryckiewade to @BrochaSternOT and @BgTalkinman:
Totally! I ♥️ that hand surgeons from around the 🌎 are working together to iron out big and longstanding creases. Nothing is ever perfect but major kudos to the team is deserved, for tackling this important question 👏 #JHSJC

Gurdas V. Singh S. R. @Gurdas2209:
On the topic of the tracks, I think it’s unwieldy for the working group to decide hierarchies when these are PATIENT.R.O.Ms #jhsjc

Reinier Feitz @ReinierFeitz to @Gurdas2209:
Agree, but to keep things organised on our part we do need to make choices on hierarchies to avoid track confusion / cross overs. example Brunelli with a trigger finger, I would be more interested in the larger problem.. #jhsjc

Reinier Feitz @ReinierFeitz to @BgTalkinman:
So we return direct value for patients by plotting individual results red line vs avg blue with sd #jhsjc

Ryckie Wade @ryckiewade to @ReinierFeitz:
THIS IS TOO COOL 😎 #JHSJC

Brent Graham @BgTalkinman to @ReinierFeitz:
Can you explain? Most of these scales are meant for use in aggregates of pts, not individuals. #jhsjc

Brent Graham @BgTalkinman to @BrochaSternOT and @ryckiewade:
I don’t consider this “siloed’ bc a broad spectrum of people participated, including pts. It’s hard to know how it could have been broader #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @BgTalkinman and @ryckiewade:
Sorry! I was vague. Siloed in terms of conditions (not stakeholders)! Different developers for each condition-specific standard set use different language & measures between sets even when referring to similar constructs. Analysis of that here: (pubmed.ncbi.nlm.nih.gov/34488730/)
#JHSJC
It’s a critique of the broader ICHOM standard sets initiative (& again there are pros & cons to this approach) vs. specifically a critique of the hand/wrist set. #JHSJC

Brent Graham @BgTalkinman to @BrochaSternOT and @ryckiewade:
My sense about #PROMIS is that it reflects more biopsychosocial constructs – important but no necessarily universally required. That was mentioned last night by @whammert and I agree #jhsjc

Reinier Feitz @ReinierFeitz to @BgTalkinman:
Sure, say at 3mth a patients returns post surgery, we plot the individual PROM vs avg to answer their main question “Doc, how am I doing?#jhsjc

Brent Graham @BgTalkinman to @ReinierFeitz:
That may be helpful in some instances but most of these scales haven’t been validated for that. They function best when they are used to describe groups of pts, rather than individuals. We need validation studies on them as markers of individual progress #JHSJC

Reinier Feitz @ReinierFeitz to @BgTalkinman:
EFORT Open Reviews online.boneandjoint.org.uk/doi/full/10.13… #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @BgTalkinman, @ryckiewade, and @whammert:
Yes. I saw @whammert’s thoughtful BPS comment. But I think the other PROMIS advantage/disadvantage is their non-condition-specific nature. Although with increased attention to linking measures, that non-condition-specific piece may be less important going forward. #JHSJC

Brent Graham @BgTalkinman to @BrochaSternOT, @ryckiewade, and @whammert:
Maybe, but I think that is far in the future #jhsjc

Brent Graham @BgTalkinman to @BrochaSternOT and @ryckiewade:
That may be true – I’m unfamiliar with that. The Hand/Wrist working group seem to do a good job of trying to avoid that criticism. #jhsjc

Reinier Feitz @ReinierFeitz to @ryckiewade, @ruudselles, and @XpertClinic:
thanks, but we did iterate on a system that was used as a foundation for the ICHOM process, so this implementation is by no means from scratch #JHSJC

Brent Graham @BgTalkinman to @ReinierFeitz:
Of course feedback is key. Are these scales valid for providing that? That wasn’t the basis for their development. #jhsjc
There is a lot of noise in most of the scales. That’s why they may not be well-suited for giving individual feedback. #jhsjc

Reinier Feitz @ReinierFeitz to @BgTalkinman:
You mean as in scientific? I should think so, as we use these scales in our papers as well. More so to return value as to answer questionnaires for altruistic reasons or future patients #jhsjc

Brent Graham @BgTalkinman to @ReinierFeitz:
Most legacy scales dont account for biopsychosocial variables and that their potential for markling individ progress. #jhsjc

Brent Graham @BgTalkinman to @ReinierFeitz:
Sorry, I wasn’t clear with this comment: noise reduces the value for marking individ progress. #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @BgTalkinman and @ReinierFeitz:
I think this is the million-dollar #PROMs question. We are moving toward using the same measure for every purpose – aggregate-level (e.g., #VBHC, QI…) & individual-level (e.g., decision-making). But can/should we? #JHSJC

Brent Graham @BgTalkinman to @ReinierFeitz:
Of course, that is laudable – and important – but it requires a substantial investment of clinician and pt effort. That is the concern many people would have. #jhsjc

Brent Graham @BgTalkinman to @BrochaSternOT and @ReinierFeitz:
Like everything in research – it depends on the research question. I’m skeptical regarding one-size fits-all approaches #jhsjc
I applaud an approach that gives feedback to pts but this requires a great deal of effort from both the clinician and pt. I’m not convinced it is the right approach. These are research tools. #jhsjc

Reinier Feitz @ReinierFeitz to @BgTalkinman:
Never thought of that, but I think difference is that we plot the values over time #jhsjc

Reinier Feitz @ReinierFeitz to @BgTalkinman:
This is one step further, doctor results vs other doctors for same procedure, here my prwe for TFCC reinsertion vs avg , not sure @BgTalkinman will appove! #jhsjc

Robbert Wouters @WoutersRobbert:
Apologies, I had similar issues with time as @BgTalkinman.. But great discussion! #JHSJC

Ward R. Bijlsma @wrbijlsma to @ryckiewade, @ruudselles, and 2 others:
The @XpertClinic has been working for over 10 years with these standard sets. It is feasible. Starting tomorrow we will make this the standard way of working integrating data into patient-doctor decision making.

Ward R. Bijlsma @wrbijlsma to @BgTalkinman:
In our experience where we integrate the questionnaires with patient preparation for their outpatient visit, this works pretty well. People not able to fill an online list, can fill it on paper or at the clinic on tablets. Handtherapist help is another major success driver #jhsjc

Brent Graham @BgTalkinman to @wrbijlsma:
Personally I think this is the right approach and these measures to improve compliance and participation are extremely important. There will be problems seeing this expand to the US bc the #standardset approach will be seen to be impractical by many. #jhsjc

Brocha Stern, PhD, OT @BrochaSternOT to @StirlingOrtho and @ryckiewade:
I don’t know the answer, but the facility/institution burden piece is often overlooked (e.g., licensing fees, tech). So I appreciate you raising it. Another potential challenge of the suggestion to move legacy measures to CATs – not equitably available to all facilities. #JHSJC

Brocha Stern, PhD, OT @BrochaSternOT to @wrbijlsma and @BgTalkinman:
Thanks for recognizing hand therapy involvement for success. 👏Limited integration of care here in the US combined with limited interoperability between health records makes a collaborative approach to data collection challenging. But def something to strive for! #JHSJC

Reinier Feitz @ReinierFeitz to @BgTalkinman:
My 94 TFCC’s results versus 848 for the group in total, which is of course only patients that responded to questionnaires and follow up #jhsjc

Robbert Wouters @WoutersRobbert:
If I may still respond on feasibility, I think that our group has shown that it is (e.g., the paper linked to by @ReinierFeitz). It requires commitment and the data should have value to both patients and clinicians. And the right infrastructure is key. #jhsjc

Brent Graham @BgTalkinman to @WoutersRobbert:
…and with measures described by @wrbijlsma it may be, but those conditions may be rarely encountered at present. #jhsjc

Robbert Wouters @WoutersRobbert to @BgTalkinman and @wrbijlsma:
yes, that may be true for others. But I think it can also be feasible without. Just trying to start measuring is difficult, but also really important. #jhsjc
That is indeed our goal but mainly the goal was global consensus. Although I am no expert on the US situation, I think this consensus helps and that there are now tools to start doing this. Others may be able to take similar steps by sharing experiences and helping hands

Brent Graham @BgTalkinman:
I hope this fruitful discussion continues. It’s great and very informative. We return here November 10, same time! #jhsjc

Ryckie Wade @ryckiewade:
Thank you everyone for this tremendous discussion! Many important points. e-see you all next month #jhsjc

Leave a Reply

Your email address will not be published.