Compliance with guidelines is important for various reasons: 1) appropriate preoperative investigations are vital parts in the process of care, accurate staging is ...
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Soft tissue sarcoma- compliance with guidelines Nijhuis P.H.A.1, Schaapveld M.2, Otter R.2, Hoekstra H.J.1 1. Department of Surgical Oncology, Groningen University Hospital, The Netherlands. 2. Comprehensive Cancer Center North-Netherlands, Groningen, The Netherlands.
Cancer 2001; 91: 2186-2195
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Introduction Soft tissue sarcomas (STS) are very uncommon tumors, with approximately 8100 new cases annually in the United States and 422 new cases annually in the Netherlands [1,2]. Because of the rarity of these tumors in individual institutions, the great variability in clinical and histopathologic presentation, and the complex multimodality (limb-sparing) treatment, standardization of diagnosis and treatment seems necessary. This important issue was recognized by the national Dutch Cooperative Group for Soft Tissue Tumors, founded in 1991, that organized a nationwide consensus meeting in 1993, resulting in nationwide accepted guidelines with regard to the diagnosis and treatment of patients with STS [3]. Compliance with guidelines is important for various reasons: 1) appropriate preoperative investigations are vital parts in the process of care, accurate staging is essential for planning of appropriate treatment, and explicit guidelines improve clinical practice [4]; 2) frequently, factors other than scientific factors guide physicians in their decision making [5]; 3) adherence to guidelines can result in significant institutional and national health care savings [6]; and 4) there are indications that the appropriateness of treatment (according to the guidelines) is related to patient outcome and survival [4,7,8]. Despite an increase in the development and dissemination of medical practice guidelines, compliance with the guidelines has often been low. No data have been reported that definitively prove that adherence to guidelines improves care for patients with STS. However, in other medical situations, guidelines have been shown to improve patient care if development, dissemination, and implementation are appropriate [4]. In the region of the Comprehensive Cancer Center North-Netherlands (CCCN), the first guidelines for the diagnosis and treatment of patients with STS were developed in February 1983 by a cooperative group for rare tumors, consisting of specialists in surgical oncology, medical oncology, radiotherapeutic oncology, and pathology from various hospitals in the CCCN region [9]. After realization of the first Dutch nationwide accepted STS guidelines in 1993, the CCCN guidelines were revised for the first time in 1994 [10]. Later revisions took place in 1996 and 1998. All physicians who treated STS patients within the CCCN region received a written copy of these (revised) guidelines. It is important to realize that these Dutch guidelines have not been proven to improve patients outcome but have been agreed on by experts in the field and are expected to improve outcome. This study is an analysis of how well these guidelines are being followed in the CCCN region.
Materials and methods Between January 1989 and January 1996, 833 patients were diagnosed with primary STS in the CCCN region, an area of 2.1 million inhabitants. From these, 393 STS were excluded because of urogenital or gastrointestinal origin, and 40 were excluded because they were diagnosed as Kaposi sarcoma. From the remaining 400 patients with head and neck, trunk (retro)peritoneal, or extremity STS, another 49 patients were excluded from analysis for various reasons, as listed in Table 1. Cancer registration at the CCCN started in 1986, although full coverage of the whole area encompassed by the CCCN was achieved only from January 1, 1989. The main
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Table 1. Reasons for exclusion. Reason Pediatric STS Medical chart lost Medical chart inaccessible Diagnosis postmortem Morphology not STS (revised) Other Total
n 15 17 3 9 3 2 49
sources for the Cancer Registry are the national computerized pathology databank (PALGA) and the hospital discharge databank to which all Dutch hospitals provide information annually on discharge diagnoses of admitted patients. Specially trained CCCN employees prospectively register data from the patients clinical records. For this study, data on diagnosis, treatment, and follow-up were reviewed by CCCN employees and, if necessary, revised and completed, based on information recorded in the patients chart. Within the CCCN district, the Groningen University Hospital is regarded as the referral center for patients with sarcomas and is indicated in the text as the center. Four of the other 18 hospitals in the CCCN region are teaching general hospitals, and 14 are nonteaching district general hospitals, all of which will be referred to as district hospitals. All district hospitals had access to well trained pathologists. Before 1995, tumor slides were reviewed by one of the STS experts at the Groningen University Hospital if histological typing was difficult or if patients were referred to the center. Since 1995, all STS diagnoses in the CCCN region have been revised and discussed monthly by a panel of pathologists from the various hospitals within the CCCN region under the chairmanship of experts from the center. According to the 1983 guidelines, diagnostic work up of patients with STS should start with an adequate physical examination, especially with regard to the tumor region. Lactate dehydrogenase and liver and renal function should be assessed (the latter two of which had been dropped from the guidelines since the 1994 revision). Radiographic examination should include a conventional X-ray of the tumor, followed by computed tomography (CT) and/or ultrasonography (US) of the tumor region. In 1994, the conventional X-ray became an optional examination, whereas magnetic resonance imaging (MRI) of the tumor became the imaging technique of choice. The presence of distant metastatic disease was examined by pulmonary X-rays, and, if necessary, followed by pulmonary CT scan. A bone scintigraphy was obligatory until 1994, after which it had to be performed only on indication [11]. Fine-needle aspiration and core biopsy were advised only to differentiate between mesenchymal, epithelioid or lymphoid origin of the tumor. For definitive histologic diagnosis, a surgical biopsy procedure was advocated. A (radical) excisional biopsy should be performed only in patients with small, unsuspicious, superficial tumors. Although no specific size was mentioned in the 1983 and 1994 guidelines, a small tumor size was interpreted as < 3 cm. In patients with larger (≥ 3 cm), suspicious, and/or deeply seated tumors, an incisional biopsy had to be performed prior to definitive resection. Further-
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more, it was stated in the guidelines that biopsy should be performed preferentially by the same surgeon who would be responsible for the definitive treatment. In patients with large tumors and/or tumors located at difficult locations, referral to the center was recommended. Actions were classified as appropriate, if the investigations performed and the interventions undertaken were in agreement with the guidelines, whereas deviations from the guidelines were classified as inappropriate. Comparison between groups was performed using the chi-square test.
Results Between January 1989 and January 1996, 351 patients with primary STS were diagnosed in the CCCN region. More than half of the patients were age > 60 years (n=201 patients; 57%). Ninety-eight patients were even age > 70 years (28%). Figure 1 presents the age distribution in patients who underwent biopsy and treatment in the center compared with patients who underwent biopsy in a district hospital but who were treated in the university hospital and patients who were diagnosed and treated in district hospitals. There was an obvious age difference between patients who were treated in the center and those who were treated in the district hospitals. More of the younger patients were treated in the center, whereas more of the older patients were treated in community hospitals (P
