Availability and scope of integrated screening for patients with Lynch syndrome

ObjectiveTo assess the availability and capacity of US-based integrated centers for the management of Lynch syndrome.MethodsA cross-sectional survey of practice patterns in the care of patients with Lynch syndrome was conducted at 33 National Cancer Institute-designated cancer centers in the USA from March 1 to June 1, 2013. Each cancer center was contacted by telephone and the caller used a uniform scripted greeting and survey format.ResultsAll centers routinely recommended colonoscopy. Other recommended screening modalities were hysterectomy and bilateral salpingo-oophorectomy (29/33; 88%), endoscopy (27/33; 82%), urinalysis (23/33; 70%), endometrial sampling (21/33; 64%), dermatologic examination (19/32; 59%), pelvic ultrasonography (18/33; 55%), serum CA125 level (14/33; 42%), urine cytology (14/33; 42%), computed tomography (1/33; 3%), and magnetic resonance imaging (1/33; 3%). Each center had a multidisciplinary team but the composition varied. A designated team leader was present at 21 centers (64%). Having a team leader was associated with an increased likelihood of recommending endoscopy (P = 0.04) and dermatologic surveillance (P = 0.01). Only 23 centers (70%) had a system in place for communicating follow-up with patients.ConclusionThe lack of consensus in practice patterns recorded among participating centers probably reflected the limited existing evidence on the usefulness of most screening modalities.