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Table 6 Extract from focus group codebook

From: Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study

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