Table 6 Extract from focus group codebook
Name | Description |
|---|---|
Early symptoms | First symptoms, symptoms prior to dx, symptoms leading to doctor visit, childhood symptoms |
Told physician | Things patients told their doctor about their symptoms, before diagnosis, for diagnosis, after diagnosis |
Failed therapy | Therapies tried and failed prior to diagnosis -- may include pharmacotherapies, physical therapy, chiropractic, acupuncture, different mattress, psych therapies, etc. etc. |
Wrong diagnosis | Misdiagnoses prior to eventual diagnosis of SpA (example - “they thought it was a back sprain” -- “they even thought I had cancer as a child” “they told me it was because one leg was shorter than the other” etc. |
Diagnosis | Experience with diagnosis and delay, Getting the SpA diagnosis, hearing the SpA diagnosis for the first time |
Helped diagnosis | Things they helped get a diagnosis – Firing docs and getting new ones, self-advocacy, having an advocate doc, friends/family who advocated, persistence, HLA-B27, etc. |
HLA-B27 | Discussion of genetic predisposition, family history, results of the HLA-B27 test. |
Impede diagnosis | Things that interfered with dx – Gender, MD or family disbelief, “drug-seeking”, No HLA-B27 |
Health system | Comments about insurance coverage, co-pays, access to services, pharmaceutical industry, etc. |
Done differently | Things the patient might have done differently in retrospect - things they wish they would have done to get their diagnosis sooner. |
Advice for physicians | Advice for primary care docs, rheumatologists, other docs |