Failure to attend appointments and loss to follow-up: a prospective study of patients with malignant lymphoma in Riyadh, Saudi Arabia.

Failure to attend medical appointments (No Show) and loss to follow-up (LTFU) among patients with cancer can adversely affect their treatment and eventual outcome. In a 3-year prospective study of 199 patients with malignant lymphoma, all of those with No Shows were contacted, and reasons given for No Shows were categorized. Of the 340 No Shows, 34.1% were due to hospital-based communication problems, 17.6% to errors in patient communication with the hospital, 7.4% to transportation problems and 16.5% to other personal reasons. Almost one quarter (24.4%) of the patients were not contactable. Reasons for No Show in all categories were instructive as to patients' attitudes to treatment. Nineteen (12.2%) of the 156 patients who had not died in the 3-year follow-up period were identified as LTFU. These 19 LTFU patients accounted for 77 (22.6%) of all No Shows. The data indicate that LTFU in this cohort is significantly less frequent than in a prior cohort followed up for 3 years from 1997 to 1998. These findings suggest that some causes of No Show can be addressed, and individuals are identified as at particular risk for No Show and ultimately LTFU. This study points out that pre-emptive strategies to reduce No Shows may be feasible and efficacious.

Loss to follow-up of patients with malignant lymphoma.

Loss to follow-up (LTFU) in cancer patients is a serious problem, yet there is little data on this and on the underlying reasons. Of 144 paediatric and 431 adult patients with lymphoma diagnosed in 1997/1998 at King Faisal Specialist Hospital and Research Center, Riyadh (KFSHRC), 30% and 48.5%, respectively, were LTFU after 4 years (excluding patients known to have died). In 2001-2002, 196 paediatric and adult lymphoma patients at KFSHRC were enrolled in a prospective study in which explanations were obtained in detail for non-attendance at follow-up appointments (No Show). Sixteen months after commencement of the study, 49 patients were No Show, because of patient-based communication problems (20), transportation problems (8), patient not contactable (18), and personal reasons (3). In addition, patients were recorded incorrectly as No Show through hospital/patient communication problems. The No Show patients, especially the 23 who failed to keep a second appointment, are identifiable as potential LTFU during the 3 years in which this cohort will be followed. This study and, we suggest, other studies on LTFU should stimulate interest in this issue, in the predisposing factors, and in strategies to address them.

Prognostic factors for medulloblastoma.

PURPOSE: To evaluate prognostic factors for medulloblastoma. METHODS AND MATERIALS: One hundred and seventy-three consecutive patients with medulloblastoma, treated at King Faisal Specialist Hospital (KFSH) from 1988-1997, were reviewed. Eighty-four percent were children less than 15 years old. From 1988-1994, treatment was at the discretion of the investigator. From 1994-1998, patients entered a single-arm best practice protocol in which, in staged patients, the surgical intent was total resection, standard radiation treatment was defined, and adjuvant chemotherapy was given to a "high-risk" subset. RESULTS: For 150 patients who completed surgical and radiation treatment, the 5-year survival rate was 58%, compared with 0% for 16 patients who were unable to start or complete radiation treatment. For staged patients, the 5-year survival was M0 + M1, 78% and M2 + M3, 21% (p < 0.0001). Other favorable significant prognostic factors were age >14 years and gross cystic/necrotic features in the primary tumor. The size of the primary tumor, the degree of hydrocephalus at diagnosis, the presence of residual tumor in the post-operative CT/MRI, and the functional status of the patient prior to radiation treatment were not significant factors. CONCLUSIONS: Stage M0 + M1 was the most powerful favorable prognostic factor. In Saudi Arabia more patients present with advanced disseminated disease, 41% M2 + M3, than in the West, and this impacts adversely on overall survival. Total resection and standard radiation treatment were not sensitive prognostic factors in a treatment environment in which 78% of patients underwent at least 90% tumor resection and 60% received standard radiation treatment. In order to improve the proportion of patients able to complete radiation treatment, consideration should be given to limiting resection when the attainment of total resection is likely to be morbid, and to delaying rather than omitting radiation treatment in the patient severely compromised postoperatively.

Extramedullary myeloid tumors in children: the limited value of local treatment.

PURPOSE: To determine the incidence of extramedullary tumors (EMT) in Saudi Arabian children with acute myeloid leukemia, the factors associated with these tumors and the impact of local treatment on local tumor control, complete remission and survival rates. PATIENTS AND METHODS: One hundred children, median age 6 years, who received their primary treatment for acute myeloid leukemia at King Faisal Specialist Hospital and Research Center, from 1983 to 1997 were studied. EMT at diagnosis occurred in 18 (18%) patients at 25 sites. Meningeal leukemia, hepatosplenomegaly, lymph node enlargement, gingival hypertrophy, and cutaneous infiltration were not included in the definition of EMT. With these exclusions, children with EMT were younger than those without EMT (median age, 3.5 v. 7.5 years) and were more likely to have meningeal leukemia at diagnosis (33% v. 10%). The t(8;21) translocation was associated with a 47% EMT incidence compared with 23% without the translocation. Local radiation treatment was given to 16 of 25 (64%) EMT sites. RESULTS: The overall 5-year survival rate for all patients was 28%, and this was not significantly influenced by the drug regimen used, meningeal leukemia at diagnosis, the presence of the (8;21) translocation, M4 and M5 morphology combined, or EMT at diagnosis. Significant differences were observed in the 5-year survival rates for patients who underwent allogeneic bone marrow transplantation (52%; N = 37) and those who attained complete remission (CR) but did not undergo transplantation (21%; N = 44) and those who did not achieve complete remission with initial therapy (5%; N = 19). Systemic and local EMT CR was achieved in 17 of 18 patients with EMT, including 12 patients who underwent radiation treatment and 5 of 6 of those who did not. Isolated relapse was not seen at an EMT site and was not noted at any later stage of the disease. CONCLUSIONS: Permanent local control at sites of EMT was achieved in all patients who attained a bone marrow CR, whether or not the site was irradiated. Local radiation treatment of an EMT site did not appear to contribute to overall CR and survival rates. The use of radiation treatment should be conservative and limited to patients in whom there is a real and immediate threat to vision or renal function or when the spinal cord is compromised.

Adjuvant chemotherapy with vincristine, doxorubicin, and cyclophosphamide in the treatment of postenucleation high risk retinoblastoma.

PURPOSE: To study risk factors and outcome of children with high risk retinoblastoma who receive postenucleation vincristine, doxorubicin, and cyclophosphamide. PATIENTS AND METHODS: Charts of all patients who received adjuvant chemotherapy for retinoblastoma were reviewed. Thirty-six patients were identified who received chemotherapy for high risk histopathologic features. Histopathology slides of these 36 patients were retrieved and reviewed, and the disease was staged according to the modified St. Jude staging system. The disease was unilateral in 23 patients (64%). There were 9 patients with stage I disease, 18 with stage II, and 9 with stage III. Twenty-four patients (67%) completed 12 of the 12 scheduled chemotherapy cycles, and 11 patients (30%) received 4 to 11 cycles because of relapse, disease progression, or family reasons. A life-threatening complication developed in one patient after the first cycle, and this patient received no further chemotherapy. RESULTS: Five (3 with unilateral and 2 with bilateral disease) of the 36 patients developed distant metastasis and subsequently died. All had massive tumors; three had choroidal and up to surgical margin optic nerve invasion, and two had tumor extending posterior to lamina cribrosa. Six other patients had local relapse or progressive disease. All of these six patients had bilateral disease and failed in the intact eye during (three patients) or after (three patients) chemotherapy. Only two of the six patients were alive with no disease 50 and 102 months from diagnosis. With a median follow-up of 5.6 years, the 5-year and 10-year actuarial overall survival rates were 86% and 74%, respectively. The 5-year survival rates for patients with modified St. Jude stage I, II, and III disease were 100%, 91% (95% confidence interval, 57% to 100%), and 58% (95% confidence interval, 22% to 94%), respectively (P = 0.008). The survival rate was significantly different among patients with optic nerve involvement anterior to lamina cribrosa, posterior to lamina cribrosa, and surgical margin involvement (100%, 55%, and 41%, respectively; P = 0.003). Multivariate analysis showed that only the degree of optic nerve involvement (and therefore, modified St. Jude stage) was predictive of poor outcome. CONCLUSION: Patients with retinoblastoma involving the optic nerve beyond the lamina cribrosa have low survival rate despite local therapy and adjuvant chemotherapy with vincristine, doxorubicin, and cyclophosphamide. Progression of disease in the intact eye of three patients receiving chemotherapy is of concern. Alternative chemotherapeutic agents should be considered for patients with such high risk features.

Imaging of abdominal neuroblastoma in children.

PURPOSE: The aims of the study were: 1) to assess the efficacy of different imaging methods for use prior to treatment; 2) to compare the surgico-histopathologically-based International Neuroblastoma Staging System (INSS) staging with the imaging results; and 3) to suggest a localisation scheme for abdominal neuroblastoma. MATERIAL AND METHODS: Thirty-one children with an abdominal neuroblastoma (median age 2 years), underwent abdominal US, CT of chest and abdomen, MR imaging of abdomen and spine, chest radiography, skeletal survey, radionuclide bone scintigraphy, MIBG scintigraphy, and bone marrow biopsy. RESULTS: In the evaluation of local disease, CT and MR were superior to US. There was no significant difference between CT and MR in assessment of the location or size of the tumour. Evaluation of invasive growth and lymphadenopathy was uncertain irrespective of imaging modality. Intraspinal extension was more distinctly demonstrated with MR. Tissue characterization with CT and MR did not contribute in the assessment of the tumours. Contrast enhancement at CT and MR examinations both improved demarcation between tumour and kidney, and was a necessity for evaluation of vessel encasement with CT. The local disease was best assessed by either CT or MR, while metastatic disease was best revealed by CT, MR, scintigraphy or bone marrow biopsy. CONCLUSION: Imaging may be a valuable basis for clinical assessment and pretreatment staging of abdominal neuroblastoma.