Milea Timbergen

264 Supplemental Table 2. Missing issues and quotes from patients Missing issues Related quotes Financial Issues Questions about health care insurance and coverage for medical aids • “It is not a ‘cancer’ and although benign, insurance companies won’t cover as it falls under sarcoma which they assume is cancer. Yet, we want to try new medicines and treatments but it is not cancer. I feel we don't get the same medical urgency. Sometimes you feel you wish it was cancer to get the help we need. We should be entitled to be discriminated against, either way, is how many of us are left feeling.” • “Feeling that you have to fight this disease, and the injustice surrounding it: e.g. life insurance” • “My health care insurance caused problems when I wanted a bigger breast prosthetic in my unaffected breast to make my breasts symmetrical” • “Restricted access to the National Health Service when professionals did not know whether to treat as a cancer or not. For example; I was entitled to free patient transport which is available to those with cancer (to my particular hospital) when I was trying to sort out transport for 25 straight days.” Information Adequate online information • “Lack of trusted information about desmoid-type fibromatosis online, or any research” • “I’m not a Facebook fan and I don’t use it for anything else, but I can’t tell you how much I have learned from reading about the experiences of others. And it is truly heart breaking when you see a newcomer to the site having plucked up the courage to post and say ‘help’ because they have a diagnosis and literally no information, support or route to other knowledge” Treatment options outside the region or country • “The only additional worry I have is certain treatment options are only available depending on where in the country you live. For example, one patient was offered cryotherapy in Manchester, UK, but that is not offered in London, UK.” Interaction with other pre-existing conditions. For example: fatigue from pain in one condition seemed to set off the pain in the other 9