Stream: implementers
Topic: Resource mapping for KDQOL survey
Manju Sampath (May 15 2017 at 16:58):
Hi,
We are trying to map the KDQOL (Kidney Disease Quality of Life) survey to FHIR. This survey should be periodically taken by the patient (once in a year).
QuestionnaireResponse seems to be an appropriate resource for this survey.
But the survey could be denied or there could be an exclusion provided by the patient from taking the survey for the below reason.
1) Patients under age 18
2) Those who cannot complete a KDQOL-36 due to cognitive impairment, dementia, active psychosis
3) Non-English speakers/readers (for whom there is no native language translation or interpreter)
4) Patients under the facility’s care for less than 3 months
5) Patients who refuse to complete the KDQOL-36
If the patient chooses to get excluded or denies taking the survey, one of the above reason should be chosen.
We wanted input from the FHIR experts on the apprpriate resource that can be used to map the KDQOL survey and which field will be suitable to hold the refusal/exclusion status and the reason.
Thanks,
Manju
Grahame Grieve (May 17 2017 at 05:56):
isn't that just a question in the questionnaire?
Manju Sampath (May 17 2017 at 15:40):
No, it is not a part of the KDQOL survey questions. If the patient is not willing to answer the survey, the reason for refusal/exclusion alone will be obtained from the patient.
Sample KDQOL survey: https://www.rand.org/content/dam/rand/www/external/health/surveys_tools/kdqol/KDQOLukq.doc
Eric Haas (May 17 2017 at 16:30):
Communication?
Lloyd McKenzie (May 17 2017 at 16:42):
So you've got a standing "request" and you'll either have a fulfilling questionnaire resposne or a record indicating why there isn't a questionnaire response. For some event resources (Immunization, Procedure), we have the ability to indicate that something wasn't done and why. For a questionnaire, you could use Observation, though we don't have a "core" way of explaining why the observation wasn't done. You might submit a change request for that. Another possibility is to use Task. That's more of a workflow mechanism where you can indicate the state of progress of a request, including that a decision was made to not act and why
Grahame Grieve (May 17 2017 at 19:53):
I think it should be an additional question in the questionnaire
Brian Postlethwaite (May 17 2017 at 21:27):
This to me does seem like a valid questionnaire response standard extension. As it could permit the QR to be saved and skip parts of validation
Last updated: Apr 12 2022 at 19:14 UTC
