Table A2.

Participant Feedback

Participant Comments*
In response to “How do you think you might use your cancer summary in future years?” or “Do you have any additional comments on the usefulness of your summary?”
Use as reference document/use in comanagement of health
“I now have one document to review whenever I have questions or need to find contact information.”
“It's a nice way to remember everything about my diagnosis and treatment plans.”
“Refresh my memory of pertinent information. I have used it to double check mg of my calcium and vitamin D to make sure I am on target for the right dosage.”
“I'll keep it as part of my medical history and use it as a reference if I need to review it.”
“I now have one document to review whenever I have questions or need to find contact information.”
“I will access the paper and [patient portal] summaries when I have questions.”
“To refresh my memory and as a record of my treatment. I hope it will be updated at least once a year. Thanks.”
“Review/refresh what has been done, suggested … therapy, periodic doctor visits and reasons for follow-up. Hopefully will not need for future treatment regimens.”
“Occasional referral to refresh my memory about details of what I need to know; answer questions related to possible future health concerns.”
“To be aware of this summary will help me take better care of myself.”
“I felt the ‘Understanding Your Disease’ part of my patient guidebook was more helpful than the summary, but it is helpful to have a version for my own medical file.”
“I had heard much or the information. This brought it together and made things clearer.”
“I found the report details very helpful because it is hard to remember everything as you are going through treatment. Now I have a document to refer to when I have questions. I think the report is a great idea for patients. I'm glad I participated in the study.”
“It's very nice to have a reference in writing. I was surprised that I forgot some facts about my treatment.”
Resource for use with family
“To keep my daughter and grandchildren informed about breast cancer and treatments available, so they will not fear cancer but fight it.”
“I am sure I will read over the report yearly and also when any family members have questions.”
“To sum up things for others.”
Resource to share with other health providers
“It is now part of my medical history to be shared with any doctor I may see.”
“I will also let my doctors know of this summary and always discuss it with them for my well-being.”
“In case I would be seen by a doctor not with the UW system. I think it would be very useful for them.”
“Unsure at this time but as a guide if a change in physicians.”
No intended current use
“Hope I don't have to use it.”
“I hope I never have to use it much. But if I have to, all my info is right there. It's nice.”
“I will file it away for future reference.”
“I will file this copy of the summary and this way I will always have the information in case we ever move.”
“Summary contained all information which I have received at appointments.”
In response to “Is there anything you would like to see added?” or with regard to missing/out-of-date information or additional data
Out of date or missing information
“I know UW Health has received my bone density results (I received a phone call when Dr X received the results), but the [care plan] hasn't been updated since they said they would try to obtain the results from my doctors at [another facility].”
“Will the summary continue to be updated (eg, dates of most recent mammo and bone density [I've had a BMD done in Nov 2012 that is not included]). Also a most recent Vit D level 2012 is not included.”†
“The surgery summary was incomplete—there was a second surgery to repair a large hematoma from … the first surgery.”‡
“Summary was not accurate—I discontinued letrozole therapy completely.”§
Concern or confusion as a result of summary
“I do not recall receiving a summary with a cover letter. What I remember doing is using e-mailed links to review my chart at UW. I was disturbed to see my lymph nodes were positive with negative margins. Last week I saw my surgeon and had my annual mammogram and questioned her about it. She showed me her records stating my lymph nodes were in fact negative, which I had always understood. So, of what benefit is my chart through UW to me if it contains contradictory information? Today, I am simply confused. I can't access it anymore. The link you e-mailed me asks me to contact the administrator, which I have done. How can I revisit this summary? It had incorrect information I would like to see resolved.”‖
“Trying to forget the whole experience and leave it behind me—I am sorry that I had radiation therapy and am reading about side effects of having the radiation for the future—it is a regret but it is done so I cannot reverse and pray for the best life possible.”
Additional information to add to summary
“I would like more of the BRCA genetic test results to be visible. Any pictures of the DNA.”
“Yes—I would like the information on the second surgery included.”¶
“I would like even more detail on the diagnosis, what we know about prognosis.”

Abbreviations: BMD, bone mineral density; UW, University of Wisconsin; UWCaSP, UW Cancer Summary and Care Plan.

^*Comments edited for grammar, clarity and content. The feedback survey was anonymous, so unless the participant contacted the study coordinator we could not always verify to what extent complaints about accuracy or missing information were valid. Notes in brackets indicate what we were able to discern.

^†Note care plans created from June to September 2012.

^‡Note only primary reconstructive procedures are routinely reported in UWCaSP. Also, timing of hematoma surgery with respect to summary creation was not available.

^§Note we were not able to verify when participant stopped drug with respect to summary creation.

^‖Note that summary was reviewed after participant contacted administrator. UWCaSP stated: “0/7 nodes positive for cancer.” Issue clarified to participant's satisfaction.

^¶Note that this is same patient who referenced hematoma after reconstruction.