Table 3.

Participants’ Perceived Mistakes and Associated Effects (n=52)

Mistake Type	Severity of Harm	Changed physician
Diagnostic Mistakes
Told by PCP* he had “COPD” and started meds but pulmonologist said “you just don’t get it in 1 year” and stopped them	None	Yes
Told by PCP he had a “very active tumor” given high Prostate Specific Antigen; referral to urologist and repeat tests were normal	None	Yes
Told ankle swelling was “fluid retention”, but next physician diagnosed renal disease and referred to nephrology	None	Yes
Told by PCP rash was an allergic reaction, but dermatologist diagnosed psoriasis	A Little	Yes
Told by PCP urinary frequency was due to a prolapsed uterus, but developed pain and actually had renal stones	A Little	Unknown
Stress test at PCP’s thought to represent questionable cardiac disease, was sent to the cardiologist who did a cardiac catheterization that showed no disease	A Little	No
Told by PCP that hernia diagnosed by a physician at a free screening was “just fat”, but later required hernia surgery	A Little	No
Told by PCP yearly exam was normal but 2 weeks later had menorrhagia requiring hysterectomy	A Little	No
Diagnosed with anxiety, but OSH† found out participant actually has had obsessive compulsive disorder and attention-deficit disorder all along	A Little	No
Was diagnosed with heart failure by PCP but found to have severe anemia	Some	Yes
Rheumatologist disagreed with participant’s multiple sclerosis physician whose diagnosis of lupus was later confirmed with no end organ damage	Some	Yes
Told by gynecologist she had eclampsia but found later to have bruised ribs	Some	Yes
Told by gynecologist that bladder issues were normal after total abdominal hysterectoy, but eventually diagnosed with bladder complications requiring catheterization	Some	Yes
Told by PCP that gastrointestinal pain, fever, and diarrhea was food poisoning, but gastroenterologist eventually diagnosed Crohn’s disease	Some	Yes
Told by multiple dentists needed different interventions for a lost crown	Some	No
Told by infectious disease specialist and rheumatologist nothing was wrong, but referral to otolaryngologist led to diagnosis of Lyme disease	Some	Yes
Told by PCP that prior diagnosis of lupus was wrong, but developed lupus- induced hypertension, renal failure, and dysfunctional uterine bleeding	A Lot	Yes
Told by PCP exam was fine, but further work-up revealed endometriosis after referral to OSH	A Lot	Unknown
Told by a specialist that a swollen axillary lymph node was breast cancer, but 2nd specialist diagnosed “cat scratch fever”	A lot	Yes
Told by many physicians chronic back pain was from a sprained/strained back, but was spinal stenosis	A Lot	Yes
Diagnosed with lung cancer while out of state, found out it was sarcoidosis	A Lot	No
Participant had a delay in diagnosis of lung disease; believes he may have asthma and not COPD, and also had delays in getting a breathing machine	A lot	No
Told by gynecologist pelvic pain was due to pelvic inflammatory disease, but later found uterus was “turned backwards” and new positions during intercourse diminish pain	A Lot	Yes
Told by OSH that dysfunctional uterine bleeding was “hormonal bleeding” but after syncopal event, was seen by surgeon who diagnosed fibroids and performed surgery	A Lot	Yes
Told by PCP that a “spider bite” needed antibiotics but it really needed incision and drainage	A Lot	No
Told neck pain was “arthritis” but participant thinks it is nerve related, because participant also has carpal tunnel syndrome	A Lot	No
Obese participant sold her home after being diagnosed with suspected uterine cancer, eventually found by gynecologist to be an infected fallopian tube	A Lot	Yes
Orthopod was uncertain of knee injury and participant was diagnosed with fractured patella and ACL/MCL tear at OSH instead	A Lot	No
PCP made diagnosis of infected knee hardware after orthopedics denied it was abnormal	A Lot	No
Told by PCP that shoulder pain was degenerative joint disease but another PCP diagnosed a torn rotator cuff	A Lot	No
Had cholecystectomy for presumed gallbladder disease, but was later found to have chronic appendicitis	Severe	Yes
Told by different surgeons he needed different surgeries for back and hip trauma after a motor vehicular accident. Participant felt they were racist and only after his money.	Severe	Yes
Had brain surgery to stop seizures but continues to have symptoms and no physician will explain why	Severe	Yes
Told after surgery from a second ophthalmologist that participant was misdiagnosed with glaucoma	Severe	No
Told by PCP in Cuba that stomach pains were diverticulitis but found out it was cholecystitis	Severe	Yes
Diagnosed and treated by PCP for diabetes, Alzheimer’s, schizophrenia with medication side effects but later found not to have these conditions; also reports sexual assault by PCP	Severe	Yes
Treatment Mistakes
Given “sulfide antibiotic” and another medication but told by pharmacist not to take them together	None	Yes
PCP gave “allergy shot” for allergies and had face swelling, and eventually emergency physician gave a second shot to reverse the first shot	A Little	No
Told to take ibuprofen for fatigue but found much later to have Hepatitis C and believes this delay prevented appropriate treatment	A Little	No
Participant perceives he received a low-strength antibiotic for a sinus infection which only got better after the trial of 3 antibiotics	A Little	Yes
Participant wasn’t told that a discogram for ruptured disk w/low back pain would be expensive, hurt, and might not help until after it was done	A Little	Yes
Participant had a series of medication side effects: Received blood pressure medication that gave participant a headache and so received opiate which lead to nausea, but had no anti-nausea medication and then got an antidepressant for pain that didn’t help	Some	Yes
Participant kept having syncope, went blind in one eye, and had seizures after private PCP took participant off medications for previously diagnosed hypertension and diabetes	Some	No
Told by PCP panic attacks didn’t need medications, but she did and this caused “3 months of hell”	Some	Yes
PCP got private urology appointment in 10 days while it was taking forever to get one at OSH	Some	Yes
Took a medication for a neck problem and his neck swelled to twice its size requiring a steroid shot	Some	Yes
Physicians wouldn’t see participant during an allergic reaction to medications	Some	Yes
Cardiologist performed expensive testing for tachycardia that didn’t treat the problem	Some	Yes
Received medication for low back pain but had nausea and weight loss, which completely resolved after the medication was stopped	Some	Yes
PCPs wouldn’t listen that her asthma is worse in the summer and lowered her medications which resulted in hospitalization	A Lot	Yes
Told to have cholecystectomy for abdominal pain and diarrhea, but symptoms have continued; has requested exploratory surgery	A Lot	Yes
Finally got physical therapy and a back brace, though only received medication for work-related low back pain initially	A Lot	Yes
Received physical therapy eventually for rotator cuff tear, but “therapist overdid it” during therapy and he needed a repeat surgery	A Lot	Yes
Tried many medications for pain from Charcot-Marie Tooth disorder which caused side effects	A Lot	Yes
Told his renal disease was from diabetes but had been told prior it was caused by a medication; he believes the disease was from the medication	A Lot	No
Has no insurance and has had delays in receiving injections and physical therapy for degenerative disc disease	A Lot	No
PCP didn’t know she had developed diabetes after severe burns and next graft surgery had to be postponed because of hyperglycemia	A Lot	No
Had to receive 3 different antibiotics for a sinus infection before getting well	Severe	Yes
Multiple physicians delayed treatment of low back pain, tried medications that didn’t work, and the pain didn’t improve	Severe	Yes
Went to OSH to have a breast implant removed after the surgeon who performed the mastectomy and reconstruction for breast cancer didn’t believe one of them had become infected	Severe	Yes

^*PCP: Primary Care Physician

^†: Outside Hospital