Anne Mourin

Exploring limits for data registration in the context of PROCARE, a quality improvement project on rectal cancer.

Abstract Background : A high burden of registration in the context of quality improvement projects may result in registration fatigue. Methods : Time required for data collection and registration was measured. Quality of care indicators (QCI) were scored and factors for adjusted benchmarking were identified. The PROCARE data set was compared with 5 other European data sets. Results : Time required for data collection varied per domain while time for registration was more uniform. On average, per item 33 seconds were needed for collection and registration. The number of data to be registered per patient was 48276, depending on the stage of the disease, resulting in a minimum of 25 minutes and a maximum of 2 hours 4 minutes per patient, follow-up not included. Focusing on 43 clinically relevant QCIs would result in a 50% reduction, using aggregate scores for performance audit in a 71% reduction. The PROCARE data set was larger than comparable European data sets. Linkage of the PROCARE database with administrative databases provided confident data on the patients’ survival status, but did not appear to be a practical option for other QCIs. Conclusions : Limiting the aim to performance audit could significantly reduce the burden of registration. In the context of a quality improvement project, the PROCARE Steering Group concluded that detailed clinical data from all centres are still required, which can be reconsidered in the future. Maintenance of a specific database remains of crucial value. Data collection and registration cannot be based on benevolence but should be compensated for.

Hibernoma mimicking liposarcoma

A 26-year-old man was referred to the ophthalmology department with a 1-week history of blurred vision of the left eye; there was no pain or redness. Ophthalmological examination found unilateral choriocapillaropathy with optic nerve oedema. He was in a stable relationship and had not travelled abroad recently, nor had he been in contact with any animals or pets. He had a history of ulcerative colitis diagnosed 2 years earlier for which he was treated for 1 year with azathioprine and oral corticosteroids. Since then he had been totally asymptomatic. Physical examination found no abnormalities. Blood analysis, including blood count, serum C-reactive protein, electrolytes, creatinine, liver enzymes, and protein electrophoresis, was normal. Serologic tests for Lyme borreliosis, Bartonella organisms, syphilis, and HIV were also negative. Serum angiotensin-converting-enzyme level was within the normal range but lysozyme was slightly increased at 21 mg/L (normal range <17 mg/L). Because sarcoidosis associated posterior uveitis was the suspected diagnosis an 18fluorodeoxyglucose PET/CT scan was done. This showed a hypermetabolic (standardised uptake value maximum [SUVmax], 3·3) lipomatous abdominal tumour measuring 12 cm × 5·6 cm × 22·3 cm with an extension into the crural hole, highly suggestive of a liposarcoma. The tumour was surgically resected, which required a mono-bloc resection with careful dissection of the femoral nerve. Surprisingly, pathological examination of the mass showed multivacuolated immature adipocytes—consistent with a diagnosis of an hibernoma. The ophthalmological pathology he presented with improved spontaneously within 1 month leading to a presumed diagnosis of isolated sarcoidosis posterior uveitis. Hibernomas are rare, benign, soft tissue tumours of young adults, mostly found in the thigh, shoulder, back, neck, and chest—although they can arise in retroperitoneum. They are slow growing, non-infiltrative, often asymptomatic tumours composed of mitochondriarich brown adipose tissue normally found in large amounts in hibernating animals and newborn babies. The elevated SUVmax, caused by the high mitochondrial content and increased metabolic activity, is a pitfall in the differential diagnosis of soft tissue neoplasms. Interestingly in this case, the SUVmax was lower than most reported cases but closer to SUVmax rates usually attributed to well differentiated liposarcomas. Retroperitoneal liposarcomas usually occur in middle-aged or older adults and are invasive in nature; liposarcomas observed in our patient’s age group are usually myxoid liposarcomas and these are rarely found retroperitoneally.