The My Child Matters programme: effect of public-private partnerships on paediatric cancer care in low-income and middle-income countries.

In low-income and middle-income countries, an excess in treatment failure for children with cancer usually results from misdiagnosis, inadequate access to treatment, death from toxicity, treatment abandonment, and relapse. The My Child Matters programme of the Sanofi Espoir Foundation has funded 55 paediatric cancer projects in low-income and middle-income countries over 10 years. We assessed the impact of the projects in these regions by using baseline assessments that were done in 2006. Based on these data, estimated 5-year survival in 2016 increased by a median of 5·1%, ranging from -1·5% in Venezuela to 17·5% in Ukraine. Of the 26 861 children per year who develop cancer in the ten index countries with My Child Matters projects that were evaluated in 2006, an estimated additional 1343 children can now expect an increase in survival outcome. For example, in Paraguay, a network of paediatric oncology satellite clinics was established and scaled up to a national level and has managed 884 patients since initiation in 2006. Additionally, the African Retinoblastoma Network was scaled up from a demonstration project in Mali to a network of retinoblastoma referral centres in five sub-Saharan African countries, and the African School of Paediatric Oncology has trained 42 physicians and 100 nurses from 16 countries. The My Child Matters programme has catalysed improvements in cancer care and has complemented the efforts of government, civil society, and the private sector to sustain and scale improvements in health care to a national level. Key elements of successful interventions include strong and sustained local leadership, community engagement, international engagement, and capacity building and support from government.

Treatment of retinoblastoma in Sub-Saharan Africa: Experience of the paediatric oncology unit at Gabriel Toure Teaching Hospital and the Institute of African Tropical Ophthalmology, Bamako, Mali.

BACKGROUND: Retinoblastoma (Rb) is the most common intraocular primary malignancy in children. In industrialised countries, the cure rate is about 95%. We present the results of a prospective study on the management of Rb in the paediatric oncology unit of Gabriel Touré Teaching Hospital and African Institute of Tropical Ophthalmology, from November 1, 2011 to December 31, 2015. PROCEDURE: The aims of this prospective study were to evaluate the treatment of localised Rb, ocular prosthesis after enucleation, conservative management for bilateral Rb as well as survival rates in all patients. Patients with early stage Rb at diagnosis were included. The treatment was performed according to the retinoblastoma treatment guidelines of the French-African Paediatric Oncology Group. RESULTS: Eighty-eight patients were included in the study. Sex ratio was 1:1 (M = 44, F = 44). Median age at diagnosis was 3 years (range: 2 months-5 years). Unilateral intraocular Rb was predominant (n = 50; 56.8%). Conservative treatments were performed on nine eyes in nine patients. Overall survival and event-free survival of the entire cohort at the end of 4 years were 73% (95% CI 60.8-81.2%) and 59% (95% CI 47.9-69.5%), respectively, with a median follow-up of 3.7 years (0.1-5.6 years). In conclusion, early enucleation in early stage of Rb can improve outcomes in resource-limited countries. Delayed enucleation and refusal of adherence to treatment are still major concerns and remain a barrier to improving overall patient survival.

Recommendations for the treatment of children with radiotherapy in low- and middle-income countries (LMIC): A position paper from the Pediatric Radiation Oncology Society (PROS-LMIC) and Pediatric Oncology in Developing Countries (PODC) working groups of the International Society of Pediatric Oncology (SIOP).

Pediatric radiotherapy is a critical part of pediatric oncology protocols and the quality of the radiotherapy may determine the future quality of life for long-term survivors. Multidisciplinary team decision making provides the basis for high-quality care. However, delivery of high-quality radiotherapy is dependent on resources. This article provides guidelines for delivery of good quality radiation therapy in resource-limited countries based on rational procurement and maintenance planning, protocol development, three-dimensional planning, quality assurance, and adequate staff numbers and training.

[Risks related to radiation therapy]. / Risques liés à la radiothérapie.

Radiotherapy is used for about 60% of cancer patients, in 2/3rd of the cases with a curative intent. If the frequent early secondary effects are transitory and with a limited impact, some late effects, even rare as cardiac troubles and secondary tumors, are now more important due to the increase of cure rate and due to the improvement of life expectancy of cured patients. Technologic improvements of the last decades reduced some of these risks, as the strengthening of human resources and the development of quality assurance procedures have contributed to reduce the risk of major accidents.

Treatment adherence in retinoblastoma: A retro-prospective cohort study in Ivory Coast and the Democratic Republic of Congo.

BACKGROUND: In high-income countries, retinoblastoma is curable in more than 95% of cases, whereas in low-income countries, mortality remains high, especially when the diagnosis is made late or the treatment is discontinued. AIMS: To determine the factors associated with adherence to the treatment of retinoblastoma in the Ivory Coast and the Democratic Republic of Congo (DRC). METHODS AND RESULTS: A retro-prospective cohort study was carried out. Data were collected from patient folders and follow-up records of parents. RESULTS: A total of 175 children with retinoblastoma were registered from January 2013 to December 2015. Seventy-six children (43%) were 5 years old and above. Care costs were covered by families in 86.9% of cases. Chemotherapy refusal was recorded in 39 cases (22.3%), and enucleation refusal was recorded in 79 cases (45.1%). After 36 months of follow-up, we recorded 16.6% deaths, 27.4% treatment dropouts, and 18.3% loss to follow-up after treatment. The commonest cause for enucleation refusal was fear of infirmity, while chemotherapy refusal and absconding treatment were due to financial constraints. CONCLUSION: Poor adherence to retinoblastoma management was due to financial constraints, and a lack of knowledge of the disease and its treatment. Family psychosocial support is needed to improve this condition.

Retinoblastoma in Sub-Saharan Africa: Case Studies of the Republic of Côte d'Ivoire and the Democratic Republic of the Congo.

PURPOSE: In most low-income countries, the diagnosis of retinoblastoma is delayed, resulting in a severe prognosis. The objectives of this study were to describe the access to diagnosis and care of children diagnosed with retinoblastoma and the challenges in two sub-Saharan African countries: the Republic of Côte d'Ivoire and the Democratic Republic of the Congo. PATIENTS AND METHODS: A descriptive cross-sectional study was conducted. Data were collected from the medical records of patients admitted during the period of January 1, 2013 to December 31, 2014. Data were entered and analyzed using Epi Info7.1 software and SAS 9.3. RESULTS: One hundred sixteen cases of retinoblastoma were collected, including 60 boys and 56 girls. The median diagnosis age was 3 years for both countries. Ninety-eight patients (84%) had unilateral retinoblastoma. Most of the patients presented with advanced disease (76% had extraocular retinoblastoma). Median time between initial symptoms and diagnosis was 8.5 months (range, 0.4 to 116.7 months). Median time between diagnosis and treatment initiation was 31 days (range, 0 to 751 days). The median cost for the treatment of the disease was estimated at $1,954 per patient. CONCLUSION: Late diagnosis of retinoblastoma, with extraocular disease, occurs frequently in both African countries. It is associated with delay in initiating treatment, and the cost of the treatment remains unaffordable for most of the families. Support groups for parents of affected children and the support of the Franco-African Pediatric Oncology Group remain important in improving early diagnosis and providing treatment in sub-Saharan African countries.

Conformity index: a review.

We present a critical analysis of the conformity indices described in the literature and an evaluation of their field of application. Three-dimensional conformal radiotherapy, with or without intensity modulation, is based on medical imaging techniques, three-dimensional dosimetry software, compression accessories, and verification procedures. It consists of delineating target volumes and critical healthy tissues to select the best combination of beams. This approach allows better adaptation of the isodose to the tumor volume, while limiting irradiation of healthy tissues. Tools must be developed to evaluate the quality of proposed treatment plans. Dosimetry software provides the dose distribution in each CT section and dose-volume histograms without really indicating the degree of conformity. The conformity index is a complementary tool that attributes a score to a treatment plan or that can compare several treatment plans for the same patient. The future of conformal index in everyday practice therefore remains unclear.

[Oncolor: a comprehensive cancer network in the Lorraine Region of France]. / Fonctionnement du réseau Oncolor: sa place au sein des réseaux de cancérologie.

Legislation governing patients' rights and health care quality (March 2002) provided for the creation of healthcare networks intended to improve the management of patients with complex and/or chronic diseases. As defined in the Cancer Plan, activated in March 2003, an oncological healthcare network covers a particular French region, with the aim of offering patients equal access to the best available care and accompaniment, based on caregiver coordination, shared multidisciplinary tools, and communication. ONCOLOR, the regional cancer network launched in the Lorraine region in 1993, complies with these objectives. Nevertheless, its future development depends on continued dynamism, durable financial support, and regular evaluation of the benefits for patients and caregivers. The key words are professionalism and consensus.

Use of a decision analysis model to assess the cost-effectiveness of 18F-FDG PET in the management of metachronous liver metastases of colorectal cancer.

UNLABELLED: Few data exist on the medicoeconomic usefulness of PET in the management of metachronous liver metastases from colorectal cancer. This study was designed to assess the cost-effectiveness of PET in the diagnosis and staging of patients with metachronous liver metastases of colorectal cancer using a decision analysis model. METHODS: Two alternatives were compared: CT and CT associated with PET (CT+PET). Transition probabilities were estimated from published data and consultations with experts. Survival data were provided by the Burgundy Digestive Cancer Registry (France). Costs of imaging techniques and treatments were assessed using reimbursements from the French health care insurance for the year 2004. Evaluation criteria included incremental cost-effectiveness ratios and the proportion of unnecessary operations avoided in patients without metachronous liver metastases. RESULTS: CT+PET was the most cost-effective strategy, presenting an expected incremental cost saving of 2,671 (approximately $3,213) per patient, for the same level of expected effectiveness as CT alone (1.88-y life expectancy per patient). Sensitivity analyses performed on epidemiologic and economic parameters showed that this model was robust. The model also suggested that CT+PET could avoid exploratory surgery for 6.1% of patients-that is, 88.4% risk reduction compared with CT alone. CONCLUSION: PET for diagnosis and staging does not generate additional survival effectiveness compared with CT alone. However cost savings associated with its use and the improvement of therapeutic management therefore justify its generalization in clinical practice.

Efficacy and morbidity of arc-therapy radiosurgery for cerebral arteriovenous malformations: a comparison with the natural history.

PURPOSE: To report the results of arc-therapy radiosurgery for cerebral arteriovenous malformation (AVM) and to compare the adverse event rate with the rate expected from the natural history. METHODS AND MATERIALS: We performed a retrospective study of our 118 first patients with a mean follow-up of 46 months (range, 5-105 months). The AVMs had features indicating a poor prognosis at initial presentation and had already been treated by previous embolizations in 88% of patients. The mean volume of the targets was 7.4 cm3 (range, 0.3-28.3 cm3). The mean minimal and maximal dose was 17.7 Gy (range, 10-25 Gy) and 24.5 Gy (range, 17-36 Gy), respectively. RESULTS: The crude and 5-year actuarial rate of cure (total obstruction of the AVM shunt at angiography) was 54% (60 of 112) and 77%, respectively. The only independent prognostic factor of cure was the AVM volume (crude cure rate 67% for <7 cm3 vs. 35% for > or =7 cm3; p = 0.001). No patient died. Transient and permanent complications and hemorrhage occurred in 5%, 1.7%, and 6% of patients, respectively. The annual risk of an adverse event (hemorrhage or complication) was 3.9%. CONCLUSION: The results of our series showed that radiosurgery, performed alone or after prior shrinkage of the AVM by embolization, is both effective and well tolerated, with a rate of adverse events comparable to that expected from the natural history.

The GETUG 70 Gy vs. 80 Gy randomized trial for localized prostate cancer: feasibility and acute toxicity.

PURPOSE: To describe treatments and acute tolerance in a randomized trial comparing 70 Gy and 80 Gy to the prostate in patients with localized prostate cancer. METHODS AND MATERIALS: Between September 1999 and February 2002, 306 patients were randomized to receive 70 Gy (153 patients) or 80 Gy (153 patients) in 17 institutions. Patients exhibited intermediate-prognosis tumors. If the risk of node involvement was greater than 10%, surgical staging was required. Previous prostatectomy was excluded, and androgen deprivation was not admitted. The treatment was delivered in two steps. PTV1-including seminal vesicles, prostate, and a 1-0.5-cm margin-received 46 Gy given with a 4-field conformal technique. PTV2, reduced to prostate with the same margins, irradiated with at least 5 fields. Dose was prescribed according to ICRU recommendations in the 70 Gy group, but adapted at the 80 Gy level. RESULTS: All patients but one in the 80 Gy arm completed the treatment. In the 70 Gy arm, the mean dose to the PTV2 was 69.5 Gy. In the 80 Gy arm, the mean dose in the PTV2 was 78.5 Gy. Acute toxicity according to Radiation Therapy Oncology Group scale during treatment was reported in 306 patients. There was no statistically significant difference between the two arms: 12% had no toxicity, 80% complained of bladder toxicity, and 70% complained of rectal symptoms. Two months after the end of treatment, 43% of the 70 Gy level and 48% of the 80 Gy level complained of side effects, including 24% and 20% of sexual disorders. There was 6% and 2% of Grade 3 urinary and rectal toxicity. Five patients required a 10-29-day suspension of the treatment. Acute Grade 2 and 3 side effects were related to PTV and CTV1 size, which was the only independent predictive factor in multivariate analysis. Toxicity was not related to the center, age, arm of treatment, or selected data from dose-volume histogram of organ at risk. CONCLUSION: Treatments were completed in respect to constraints. Acute toxicity was acceptable. Intensity of toxicity depended on target volumes.

[Cancer networks]. / Actualité des réseaux de cancérologie.

The complexity of legislation and the obstacle race run by all promoters in search of approval and funding for their projects could have greatly hindered the development of healthcare networks in France, or at least discouraged many promoter. Yet social and health professionals, along with certain healthcare service staff, considered these networks highly useful for decompartmentalising the French healthcare system. They would favour patient-oriented projects. It is not a surprise that the number of networks in the field of oncology is expanding rapidly, with more than 60 projects registered by public authorities by the end of 1999. Cancers are chronic diseases which often bring into play the patient's vital prognosis, as well as psychological and social consequences - sometimes dreadful - for patients and their relatives. Cancer patient management calls for a multidisciplinary approach in elaborating the therapeutic project and providing psychological support. Continuity and consistency of care require a partnership between different care providers from different specialities, with different medical practice and environments - hospital or home care, public or private practice. Though so much information has become available in the medical literature, quality of care demands that each healthcare professional keeps fully aware of the latest diagnostic or therapeutic findings and techniques in his/her field. Certain cancer networks have become a place where care providers and establishments can share methods and medical practice. Network promoters and members have thus been able to regain control over the functioning and the future of their profession. Patients have also obtained a place in decisions concerning their own health. Setting up healthcare networks will certainly shake up the tranquil system which the WHO has reported as the world's best health care system at the dawn of this century. However, this will also probably contribute to maintaining this excellence.

[Clinical practice guidelines in cancerology: comparative study of three decision support-systems for breast and prostate cancer in Lorraine french region]. / Référentiels de bonnes pratiques cancérologiques: étude comparative de trois supports d'aide à la proposition thérapeutique pour les cancers du sein et de la prostate en Lorraine.

Oncolor, the French regional cancer network of Lorraine, proposes clinical guidelines for the diagnosis, the treatment and the follow-up of cancers. In addition to paper documents, two computerized supports, a web site and the Kasimir software have been developed to make the use of these guidelines and their updating easier. This study aims at evaluating these three tools in breast and prostate cancer and to determine if computerized supports provide an additional help and an added value. From May to July 2001, 25 physicians of the Oncolor network have analysed, by consulting the guidelines on each of the 3 supports, 23 clinical cases of breast cancer and 22 cases of prostate cancer, i.e. in total 1,293 cases. We observe for breast cancer a response rate consistent with the guideline significantly higher with the Kasimir software compared to paper (87.1% versus 77.8%) or to Internet (87.1% versus 75.8%), an optimisation of the recourse to a specialised physician or a pluridisciplinary committee and globally a good satisfaction of the users. These results induce us to continue with the Kasimir experiment, to develop it for other cancers, especially those with a complex management and to evaluate its impact on medical practices.

[How to improve the initial management of adult patients with tumors of bone and soft tissues: the experience of a multidisciplinary committee from the Oncolor network before the distribution of regional guidelines]. / Comment améliorer la prise en charge initiale des patients adultes atteints de tumeurs des os et parties molles: expérience d'un comité de concertation pluridisciplinaire du réseau Oncolor, avant la diffusion des référentiels régionaux.

Tumors of bone and soft tissues in adults are rare accounting in France for 2000 to 2500 new cases per year. These tumors are heterogenous and their diagnosis is made after first surgery. Therefore, an early pluridisciplinary approach, by physicians who have acquired an expertise in this field, is advised before any biopsy or surgical resection and at all the further step in the subfrequent management. This paper describes the experience of a pluridisciplinary committee, specialized in malignant tumors of bone and soft tissues in adults, with a highly specialized team which is part of a network in the treatment of cancer in Lorraine, the Oncolor network, before the distribution of regional guidelines. After a description of the organisation of this committee, we made a retrospective analysis of all the cases submitted to these experts advice for the first time, between January and December 2000. This study reveals an insufficient pluridisciplinary coordination at the initial management, which has been done by making regional referentials available, and therefore some errors which lead in some cases to inadapted treatment. It underlines therefore the necessity to implement more actively the present data of science, and to develop the management in multidisciplinary committees. Oncolor aims to harmonize this pluridisciplinary approach as well as to diffuse standard recommendations.

[Training of pharmacy personnel in the management of a centralized unit: the Oncolor network experience]. / Formation du personnel des pharmacies à la gestion d'une unité centralisée: expérience du réseau Oncolor.

The network of cancer care units in Lorraine area (Oncolor) developed management training for people working in chemotherapy units, and cytotoxic drug preparation. The programme was framed both for staff of executives (pharmacists), and technicians. Firstly, comparison between practices and theoretical recommendations lead to the elaboration of standardized operating procedures. Secondly, we elaborated a specific handbook for this education programme. A series of four-days independent sessions were organized for pharmacists and technicians. Each session combined theoretical and technical teaching for preparing antineoplastic drugs. Participants passing a successful final examination received a certificate from the Oncolor's network attesting their capacity to manage a chemotherapy unit. Four sessions were performed, with 35 participants. Only 31 passed at final examination. This preliminary experience will be enlarged to all members of the network and regularly brought up to date.

[Retinoblastoma: inventory in Mali and program to develop early diagnosis, treatments and rehabilitation]. / Le rétinoblastome: état des lieux au Mali et programme d'aide au diagnostic précoce, aux traitements et à la réhabilitation.

Retinoblastoma (RB) is a rare embryonic tumour that represents 1/16,000 births in France. In Mali, a study showed the characteristics of a hospital series of cases seen in Bamako in the Pediatric Oncology Unit of Gabriel Touré Teaching Hospital and in the Tropical Ophthalmology Institute of Africa (IOTA) between January 2005 and June 2007. Median age was 4 years versus 2 years in France for unilateral disease. Near two third of children with RB had extra-ocular extension at diagnosis, which is now exceptional in France. Only 11% were bilateral versus 35% in France. Cure rate was around 50%, but it is estimated only on the cases arriving in Bamako and with at least 20% lost of follow-up. Cure rate is over 95% in France within an exhaustive register. RB appears as an exemplary tumor and rapid improvements could be obtained in low-income countries with relatively limited means. This is why, the Alliance mondiale contre le cancer (AMCC), the Institut Curie in Paris, which is the reference center in France for RB, and teams in Bamako were proposing a program to help the development of early diagnosis, treatments, including eye preservation, and rehabilitation of children with RB in sub-Saharan Africa in collaboration with the Groupe franco-africain d'oncologie pédiatrique (GFAOP). The official launching of this program was held in Bamako November 4, 2011 for Mali and the surrounding regions. After this first experience, this program is now implemented in other countries.