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Pediatric oncology-hematology outreach: Evaluation of patient consultations by teleconferences between Indonesian and Dutch academic hospitals
Accepted Manuscript Pediatric Oncology-Hematology Outreach: Evaluation of Patient Consultations by Teleconferences between Indonesian and Dutch Academic Hospitals
K. Handayani, M. Veening, W.A. Kors, E. Supriyadi, B.W. Indraswari, E. Kelling, A. J.P. Veerman, G.J.L. Kaspers, M.N. Sitaresmi, S. Mostert PII:
S2468-1245(18)30041-X
DOI:
10.1016/j.phoj.2018.09.002
Reference:
PHOJ 85
To appear in:
Pediatric Hematology Oncology Journal
Received Date:
19 April 2018
Accepted Date:
01 September 2018
Please cite this article as: K. Handayani, M. Veening, W.A. Kors, E. Supriyadi, B.W. Indraswari, E. Kelling, A.J.P. Veerman, G.J.L. Kaspers, M.N. Sitaresmi, S. Mostert, Pediatric OncologyHematology Outreach: Evaluation of Patient Consultations by Teleconferences between Indonesian and Dutch Academic Hospitals, Pediatric Hematology Oncology Journal (2018), doi: 10.1016/j.phoj.2018.09.002
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ACCEPTED MANUSCRIPT Pediatric Oncology-Hematology Outreach: Evaluation of Patient Consultations by Teleconferences between Indonesian and Dutch Academic Hospitals K Handayani, MDa, M Veening, MD,PhDb, WA Kors, MDb, E Supriyadi, MD,PhDc, BW Indraswari, MDc, E Kelling, MDb, AJP Veerman, MD,PhDb, GJL Kaspers, MD,PhDb,d, MN Sitaresmi, MD,PhDc, S Mostert, MD,PhDb
aPediatrics, bPediatric
Nyi Ageng Serang District Hospital, Yogyakarta, Indonesia
Oncology-Hematology, VU University Medical Center, Amsterdam, the Netherlands
cPediatric,
Oncology-Hematology, Universitas GadjahMada, Dr Sardjito Hospital, Yogyakarta,
Indonesia dPediatrics, ePrincess
Universitas GadjahMada, Dr Sardjito Hospital, Yogyakarta, Indonesia
Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Correspondence to: K Handayani, Pediatrics, Nyi Ageng Serang District Hospital, Yogyakarta, Indonesia (email:[email protected], telephone: +6285643133934)
Word count: Abstract: 274 words Main text: 3887 words
Key words: outreach program, childhood oncology-hematology, teleconference, adherence
Abbreviation: ALL
acute lymphoblastic leukemia
ACCEPTED MANUSCRIPT
Pediatric Oncology-Hematology Outreach: Evaluation of Patient Consultations by Teleconferences between an Indonesian and Dutch Academic Hospitals ABSTRACT Background Improving the quality of care in resource limited settings through an outreach program is challenging. Teleconferencing is increasingly being used and considered a breakthrough in medical education. We evaluated adherence with childhood oncologyhematology teleconferences between two academic hospitals in Indonesia and Netherlands. Methods Teleconferences held during 12 months between an Indonesian and a Dutch academic hospital were evaluated using a standardized form. Both adherence with diagnostic and treatment advices for individual patients were explored in medical records. Results During 38 teleconferences, difficult cases of 53 children were discussed by Dutch pediatric oncologists and Indonesian residents. Dutch oncologists advised diagnostic adjustments in 41 cases (77%). Most common diagnostic advices were: laboratory tests (68%), imaging (54%), physical examination (41%). Diagnostic advices were not adhered to in 12 children (30%). Common reasons for non-adherence were: not applicable in middle-income setting (25%), disagreement with Dutch advice (17%), CT scan is out of order (17%), patient died (17%). Dutch oncologists advised treatment adjustments in 40 cases (75%). Most common treatment advices were: change of protocol (38%), nutritional support (30%), prevention of tumor lysis syndrome (20%). Treatment advices were not adhered to in 9 children (22%). Common reasons for nonadherence were: poor condition of child (44%), not applicable in middle-income setting (22%), patient died (22%), disagreement with Dutch advice (11%). Twenty-four children (45%) died after teleconference was held. Twenty-nine children (55%) were alive. These children abandoned (38%), completed (31%) or were still under treatment (31%). Conclusion Through teleconferencing, knowledge between high and low or middle-income countries can be shared to improve patient care. Locally applicable advices are required. Active participation by pediatric oncologists at both partner sites is recommended.
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ACCEPTED MANUSCRIPT INTRODUCTION Survival of childhood cancer in high-income countries is around 75-80%, but frequently less than 35% in low and middle-income countries [1–3]. This large survival discrepancy is influenced by various factors related to availability of health-care facilities and health-care providers. For instance, in low and middle-income countries specialized oncology-hematology centers are scarce. Fewer medical specialists are available serving a larger population. Due to physician dual practices the time spent by medical specialists in public hospitals is limited. Often inexperienced doctors need to provide complicated oncological care without proper supervision. As a consequence, limited available knowledge and expertise becomes a main problem in treating oncology-hematology patients [4–6]. Oncology outreach programs between high-income countries and low or middleincome countries may help narrow these disparities of knowledge. Recently, teleeducation has widely been used and considered a breakthrough in medical education allowing consultation of individual patients. Transfer of knowledge through teleconferencing, as previously reported in a Brazilian-American and JordanianCanadian outreach program, may importantly improve patient care in low or middleincome countries [3,7–14]. Despite the international recognition and wide usage of teleconferences in outreach programs, little is known about the effectivenes of this tool. How well are the provided advices by the high-income country partner actually implemented and adhered to? The aim of this study was to evaluate adherence with teleconferences regarding childhood oncology-hematology patients between two hospitals in Indonesia and Netherlands. Both adherence with diagnostic and treatment advices were explored.
MATERIAL AND METHODS Setting The study was performed at Dr Sardjito Hospital in Yogyakarta, Indonesia and at VU University Medical Center in Amsterdam, the Netherlands. The departments of pediatric oncology at both centers have a twinning outreach program since 1992. In the past 26 years, the twinning partners have developed protocol-based therapies and multidisciplinary approach together. In addition, diagnostic facilities have been improve. Mutual site visits have been made. Training programs for doctors, nurses, and laboratory personnel have been organized. Medicines have been donated. Joined PhD programs have been conducted. Students have been exchanged. Knowledge and expertise have been started and gained at both partner sites. And a structured parental education program has been implemented [15–18]. Indonesia is a large middle-income country in Asia. It is in fact the third largest country of Asia and has a population of 258 million inhabitants. The Netherlands is a small high-income country in Europe. It has a population of 17 million inhabitants [19,20]. At Dr Sardjito Hospital, one of twenty-four academic hospitals in Indonesia, around 160-170 children are diagnosed with a malignancy per year. Four pediatric oncologists supervise the pediatric oncology department. At VU University Medical Center, one of six academic hospitals with a pediatric cancer center in the Netherlands, around 65-
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ACCEPTED MANUSCRIPT 70 children are diagnosed with a malignancy per year. Six pediatric oncologists supervise the pediatric oncology department.
Study Design This prospective descriptive study was conducted between April 1st 2014 and March 31th 2015. The aim was to evaluate the adherence with teleconferences regarding childhood oncology-hematology patients between Indonesia and Netherlands. Both adherence with diagnostic and treatment advices were explored in the medical records. The teleconferences were scheduled every week on Tuesday via Skype software. A structured standard form was designed by a panel of Dutch and Indonesian doctors and used during the teleconference study. This form was divided in three parts: A, B and C. The form facilitated the teleconference, minimized miscommunication due to the different languages spoken by the partners (Indonesian, Dutch and English), and structured the subsequent follow-up in the medical records. One day prior to the teleconference Indonesia sent the difficult cases they wanted to discuss to the Netherlands using form A by email. The selected and presented cases concerned children admitted at the Indonesian childhood oncology-hematology ward with complex diagnostic or treatment issues. Selection of cases was supervised by Indonesian pediatric oncologists. Form A described: a) Demographics (name, hospital number, date of birth, gender, distance home to hospital, type of health-insurance, hospital class at diagnosis); b) Diagnostic status of patient (physical examination, clinical diagnosis, lab, imaging, pathology (PA), consultant, conclusiveness of PA, completeness of staging, and (change of) work diagnosis during course of disease); c) Treatment status of patient (provision of treatment, treatment protocol, change of treatment protocol during course of treatment). In addition, the Indonesian team noted and subsequently specified whether they requested a consultation about diagnostics and /or treatment. After the teleconference between the Indonesian and Dutch team was held, the Dutch team sent their diagnostic and treatment evaluation and advices to Indonesian team using form B by email. Form B summarized: a) Type of teleconference (date, attendence list, person who verbally presented teleconference at Indonesian and Dutch side, and whether a technical problem was encountered); b) Diagnostic evaluation (adjustments required or not) and advice by the Netherlands (revision PA, physical examination, lab, imaging, consultant, other advice); c) Treatment evaluation (adjustments required or not) and advice by the Netherlands (consultant, change of protocol, timing of chemotherapy course, transition from curative to palliative treatment, antibiotics dosage and duration, nutrition, pain relief, transfusions, antiemetics, prevention tumor lysis syndrome, bladder protection, hygiene and living rules, other advice). One month after the teleconference had been held adherence with the Dutch advices was evaluated in the patients’ medical record using form C. In case of non-adherence, the underlying reasons for non-adherence by the Indonesian team were documented by independent researcher. Form C contained five non-adherence categories for both the diagnostic and treatment advice: a) Dutch advice (unclear/ complex/ disagreement/ insignificant/ not applicable 3
ACCEPTED MANUSCRIPT in middle-income setting); b) Health-care providers Indonesia (Doctors: forgetting/ lack of time/lack of knowledge/unavailable/refusal, Consultant: forgetting/ lack of time/lack of knowledge/unavailable/refusal; c) Facilities Indonesia (unavailable PA method, unavailable imaging device/ unavailable lab test/ waiting list); d) Parents/child (no money/ no health-insurance coverage/ refusal parents or child/ treatment abandonment/ religion/ complementary alternative treatment/ fear/ family conflict/ forgetting/ poor condition child/ patient died/ travel distance); e) Other (specify). Medical records follow-up to check the patients’ condition was performed after 3, 6 and 12 months. It was recorded whether patients had died or were alive, and whether they abandoned treatment, completed treatment or still underwent treatment. Two illustrative case reports were included to elucidate the nature of the teleconferences, the complexity of the medical issues raised, and the underlying reasons for either adherence or non-adherence with the provided diagnostic and treatment advices at the time of evaluation. Data Analysis Frequency distributions, median, means and standard deviations were assessed. Data management and analysis was performed with SPSS version 22 and microsoft Excel. RESULTS Between April 2014 and March 2015, 53 teleconferences could have taken place on Tuesday. In total, 38 teleconferences (72%) were succesfully held. The reasons why 15 teleconferences (28%) were not held were: technical problem with internet connection (n=9), public holiday in Indonesia (n=2), illness of Indonesian pediatric oncologists (n=2), public holiday in the Netherlands (n=1), and unknown (n=1) Attendance of teleconferences In Indonesia the 38 teleconferences were attended by: a pediatric oncologist (in 63% of all teleconferences), a pediatrician (in 13% of teleconferences), 3-4 residents (100% of all teleconferenes), and a fellow (47% of teleconferences). In Indonesia the teleconferences were always prepared in writing and verbally presented by a resident (100%). In the Netherlands the 38 teleconferences were attended by: a pediatric oncologist (in 100% of all teleconferences), and a pediatrician (in 5% of teleconferences). In the Netherlands the teleconferences were always verbally presented and the format was subsequently filled in by a pediatric oncologist (100%). Demographics During the 38 teleconferences, cases of 53 children had been discussed. Table 1 shows patients’ socio-demographic and clinical characteristics. The diagnosis had been made by: physical examination (91%), laboratory tests (85%), imaging (64%), pathology anatomy (44%), and a consultant (31%). The pathology results were conclusive in 26% of cases. Staging was complete in 6% of cases. In 7% of cases the diagnosis had been changed during the course of the disease. Diagnostics Indonesia requested consultation about diagnostics in 37 of the total 53 cases (70%), but according to the Dutch evaluation the diagnostics needed adjustments in 41 cases 4
ACCEPTED MANUSCRIPT (77%). Thus in 4 cases the Dutch provided diagnostic advice without receiving an Indonesian request for it. Table 2 illustrates the diagnostic advices provided by the Netherlands and whether these advices were adhered to by Indonesia. The most common diagnostic adjustments advised by the Netherlands were: laboratory tests (68%), imaging (54%), and physical examination (41%). The Dutch diagnostic advice least adhered to by Indonesia was: laboratory tests (non-adherence rate of 25%). Of the total 41 children whose diagnostics needed adjustments according to the Netherlands, the advice was not adhered to in 12 children (30%). Reasons for not following the Dutch diagnostic advice in these 12 children were: not applicable in middle-income setting (n=3, 25%) as either laboratory test (n=2) or MRI scan (n=1) was unavailable, disagreement with Dutch advice (n=2, 17%), CT scan was out of order (n=2, 17%), patient died (n=2, 17%), forgotten by Indonesian health-care providers (n=1, 8%), Mantoux test was out of stock (n=1, 8%), and poor condition of child (n=1, 8%). Treatment Of the 53 patients, 33 (62%) received treatment with either curative (n=31, 94%) or palliative (n=2, 6%) intent. A treatment protocol was used in 27 children (81%). The treatment protocol had changed during the course of treatment in 10 of these children (37%). Indonesia requested consultation about treatment in 38 of the total 53 cases (72%), but according to the Dutch evaluation the treatment needed adjustments in 40 cases (75%). Thus in 2 cases the Dutch provided treatment advice without receiving an Indonesian request for it. Table 3 illustrates the treatment advices provided by the Netherlands and whether these advices were adhered to by Indonesia. The most common cancer treatment adjustments advised by the Netherlands were: change of protocol (38%) and timing of chemotherapy course (15%). The Dutch cancer treatment advices least adhered to by Indonesia were: change of chemotherapy dosage (non-adherence rate of 50%) and transition from curative to palliative treatment (non-adherence rate of 50%). The most common supportive treatment adjustments advised by the Netherlands were: nutrition (30%) and prevention of tumor lysis syndrome (20%). The Dutch supportive treatment advice least adhered to by Indonesia was: prevention of tumor lysis syndrome (nonadherence rate of 13%). Of the total 40 children whose treatment needed adjustments according to the Netherlands, the advice was not adhered to in 9 children (22%). Reasons for not following the Dutch treatment advice in these 9 children were: poor condition of child (n=4, 44%), not applicable in middle-income setting (n=2, 22%) as pathology anatomy method was unavailable, patient died (n=2, 22%), and disagreement with Dutch advice that it does not concern a malignancy (n=1, 11%).
Follow-up Table 4 illustrates that of all 53 children discussed during the teleconferences, the diagnostics and/or treatment of 50 children (94%) needed adjustments according to
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ACCEPTED MANUSCRIPT the Netherlands. Overall, the provided Dutch diagnostics and/ or treatment advices were not adhered to in 13 children (26%). Of the 53 discussed children, the conditions of 8 children (15%) were discussed during 2-5 successive teleconferences as more complications arose. Of all 53 children discussed during the teleconferences, 24 children (45%) died. These children died; <3 months (50%), 3-6 months (33%), >6 months (17%) after the teleconference was held. In total, 29 children (55%) were alive at the time of assessment. These children abandoned treatment (38%), completed treatment (31%), or still underwent treatment (31%).
CASE REPORT 1 Boy of 13 years old, diagnosed with nasopharyngeal carcinoma, received curative treatment with chemotherapy and radiotherapy according to 2002 Nasopharynx Carcinoma Protocol (4th week) with clinical good response. Staging before start of chemotherapy was not performed, so it was not clear whether there were metastases upfront. The patient was admitted with fever, anemia, leukocytosis and trombocytosis. Physical examination showed that the patient was in a malnourished poor condition with dyspnea and decreased vesicular sounds on the right hemithorax. The Indonesian doctors suspected that there was atelectasis of the right lung caused by pleural metastasis and wanted to change curative into palliative treatment. During the teleconference, Indonesia requested consultation about diagnostics. Which diagnostic procedure could establish the diagnosis pleural metastasis? However, the Dutch oncologists disagreed with the Indonesian doctors and did not think this child had pleural metastasis. The Dutch thought that it was more likely that the patient suffered from an intercurrent infection considering the fact that there was a good clinical response to the chemotherapy given and the increased temperature of the patient. The Dutch oncologists mentioned that pleural metastasis could be excluded by a CT-thorax, but that a pneumonia was more likely. Therefore the Dutch advised to repeat C Reactive Protein, which was elevated, and perform an X-thorax, which showed atelectasis in the superior lobe and pleural effusion of the right lung. A CTthorax was performed eight days after the X-thorax because the dyspnea persisted, which showed pneumonia and pleural metastasis. Indonesia also requested consultation about treatment. Should this patient be treated by radiotherapy or with chemotherapy as part of palliative treatment? The Dutch oncologists mentioned that patients with pleural metastasis have stage IV disease and can still be cured. Therefore the Dutch advised to continue curative treatment and not change to palliative treatment. The patient also required intravenous broadspectrum antibiotics. The Indonesian doctors adhered to the Dutch treatment advice and continued curative treatment. The patient was discharged from hospital in a good condition.
CASE REPORT 2 Boy of 13 years old, diagnosed with relapsed acute lymphoblastic leukemia (ALL), received induction treatment according to ALL R3 Protocol (3rd week). Physical examination showed that the patient was in a malnourished poor condition with 6
ACCEPTED MANUSCRIPT peripheral pitting edema, dyspnea, subcostal retractions, and decreased vesicular sounds in the left lung. Laboratory tests showed hypoalbuminemia and thrombocytopenia. Chest X-ray showed massive pleural effusion and suspected left diaphragmatic eventration. The Indonesian doctors thought that the patient suffered from tuberculosis. Therefore pleural fluid was tapped and sent to the laboratory for tuberculosis and to confirm tuberculosis and secondary bacterial infection. The patient was treated with broadspectrum antibiotics and albumin transfusion. During the teleconference, Indonesia requested consultation about diagnostics. Which diagnostic procedure could establish the diagnosis left diaphragmatic eventration? However, the Dutch oncologists advised to focus on the infection. The Dutch agreed that the child may have tuberculosis and advised to wait for the pleural fluid laboratory results, to perform a Mantoux test, and to daily repeat the physical examination to check the respiratory condition of the patient. Indonesia adhered to the diagnostic advices. Eventhough Indonesia did not request consultation about treatment, the Dutch thought treatment adjustments were needed. The Dutch explained that ALL R3 protocol used for relapsed ALL patients contains PEG-polyethylene glycol-conjugated asparaginase every 2 weeks, and advised to render this medication despite the patients’ poor clinical condition as this drug does not suppress the bone marrow and the leukemia required treatment. Alternatively, if this drug would not be available at the Dr Sardjito Hospital, native L-asparaginase could also be given 3 times per week, preferably in a dose of 5000U/m2. However, Indonesia disagreed with the Dutch treatment recommendation because of the poor clinical condition of the boy and decided to give native Lasparaginase 2 times instead. Subsequently the patient suffered from an allergic reaction to this medication. The boy died 6 days after the teleconference was held. It is unclear whether the boy died of progressive leukemia, tuberculosis infection or another complication or disease.
DISCUSSION Improving the quality of care in resource limited settings through an outreach program is challenging. Recently, teleconferencing has been widely used for consultation on individual patients and is considered a breakthrough in medical education. Teleconferences between partners from high-income countries and low or middleincome countries promote two-way interactions, and facilitate learning and sharing of knowledge between the experts. Despite some technical obstacles in its implementation, tele-education is used in many medical schools and institutions across the globe and regarded as an important tool to narrow the geographical distance and disparities of knowledge. It facilitates collaboration and networking across nations, and stimulates the learning proccess in medicine [11–14,21–26]. Despite the international recognition and wide usage of teleconferences in outreach programs, little is known about the effectivenes of this tool. We evaluated adherence with childhood oncology-hematology teleconferences between Indonesia and Netherlands. During one year 38 hematology-oncology teleconferences were succesfully held. However, we also learned that 28% of teleconferences could not take place. The most common reason was a technical problem with the internet connection. Previous studies also reported that technical problems with the Skype software via
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ACCEPTED MANUSCRIPT internet were quite common at great distances. Sometimes these technical failures took a long time to be resolved leading to the interruption or even cancellation of teleconferencing sessions [22,23]. During 38 teleconferences the conditions of 53 patients were discussed. Our study showed that in 94% of presented cases, adjustments were indeed required according to the Dutch team. This finding might illustrate that still a large knowledge gap must be bridged in low or middle-income countries. For example, in the first case report the Dutch team disagreed with their Indonesian colleagues that a child with nasopharynx carcinoma required palliative instead of curative treatment. The Dutch oncologists recommended to continue curative treatment, and after treatment with broadspectrum antibiotics the child recovered and was discharged from hospital in a good clinical condition. This underlines the importance of outreach programs. Education and training of all involved professionals, residents, pediatricians, fellows and pediatric oncologists, are fundamental to improve patient care and outcomes [4]. Our study clearly illustrates the diagnostic difficulties medical teams in low and middleincome countries encounter. In 94% of the presented cases proper staging before start of treatment was not performed. Pathology results were not conclusive in 74% of cases. Yet, determining the accurate diagnosis and risk group is essential information for the treatment of a child with cancer. Inadequate diagnosis or staging may lead to the wrong treatment. In low and middle-income countries the reasons for poor diagnostics are numerous. Advanced diagnostic immune techniques may not be available, poor surgery may result in low quality biopsies, conservation of biopsies may be improper, and pathologists may lack adequate training [27,28]. Our study therefore underlines the importance for an in-depth investigation of the diagnostic problems faced at the Dr Sardjito Hospital. We found that in most cases both diagnostic and treatment adjustments were required according to the Dutch partner. When only a diagnostic adjustment was recommended, non-adherence (40%) was most common. Primarily because the diagnostic test was locally not available. In case both a diagnostic and treatment adjustment was required non-adherence occurred in 1 out of every 4 children. Non-adherence (11%) was least common if only a treatment advice was provided. Reasons for non-adherence were mainly that the advice was not regarded as applicable in a middle-income setting, disagreement with the Dutch advice and the poor condition of the children. This is clearly illustrated by the second case report in which the recommended drug by the Dutch oncologists was not available and the condition of the child with ALL was considered too poor by the Indonesian team to administer the adviced dosage of an alternative drug. A limitation of teleconferencing is that one of the participating partners cannot see the real situation, leading to advices that can be disagreed upon by the colleague treating the children [29]. The least adhered to diagnostic advices were imaging and laboratory tests. Although good childhood cancer care requires many and advanced diagnostic tests, availability of imaging facilities and laboratory tests may be restricted in low or middle-income countries [4–6,30]. The Dr Sardjito Hospital has only one MRI scan and one CT scan serving over 1000 patients leading to long waiting lists. When one of these imaging devices breaks down its repair can take a long time. Patients who can afford it, will then be referred to a private clinic. The others need to wait.
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ACCEPTED MANUSCRIPT The least adhered to treatment advices were change of chemotherapy dosage and transition from curative to palliative treatment. Taking the poor clinical condition of the children into account, the Indonesian team considered the dosage recommendations by their Dutch colleagues sometimes as inappropriate. It is well-known that when chemotherapeutic protocols fit for high-income countries are used in low or middleincome countries, this may result in excessive treatment toxicity, high mortality, and increased treatment abandonment. Therefore protocols in these settings require modification . Reasons for the non-adherence and resistance to the Dutch advice to start palliative treatment are multiple. First of all, integration of palliative care in medical delivery systems has not been established yet at the Dr Sardjito Hospital. Resources and regimens for palliation are therefore still limited. Some oncologists prefer to continue curative treatment, some state that they want to respect the choice of parents, whereas others consider palliative care too time consuming. Personal perspectives of health professionals hereby seem to determine whether a child is enabled to receive good palliative care. It has been well documented that attitude shifts are required in low and middle-income countries towards palliative and end-of-life care [31–33]. This finding certainly deserves more attention in our future collaboration. Dutch pediatric oncologists always attended and verbally presented their insights during the teleconferences, whereas at Indonesian academic institute rotating junior residents were given this duty as part of their pediatric traineeship. The Indonesian pediatric oncologists, serving larger patient populations than their Dutch colleagues, were content with the active participation of residents. Teleconferencing was regarded as a time efficient method to improve patient care. However, the Dutch pediatric oncologists would prefer to discuss complex cases in future teleconferences with the Indonesian pediatric oncologists instead. As residents only work on the pediatric oncology ward for a short period of 4 weeks, the Dutch team felt that too much time spent on explaining the basics of pediatric cancer care and that the effect of their education did not have a lasting effect. Overall, this study teaches us that the nature of outreach teleconferencing implies that the high-income partner provides advice without complete knowledge of setting and patient. As a result the high-income based advice may not always be appropriate for a resource-limited setting. Many aspects of local resources and cultural issues require diagnostic and treatment adaptatioins in low or middle-income countries. This study has some limitations. First of all, studies on adherence tend to increase adherence of the involved medical teams during the research period. In addition, our study took place at a single Indonesian hospital involving a Dutch-Indonesian outreach program and its results can therefore not be extrapolated to other outreach programs between other nations. Participants’ satisfaction with the teleconference was not evaluated. We conclude that through teleconferencing knowledge between high and low or middle-income countries can be shared to improve patient care. Provided advices should be applicable in middle-income settings. Successful teleconferencing requires that partners at both sites need to agree and be satisfied with not only their own but also their partners’ role in it. Different cultures and perspectives on work ethos need to be taken into account. Expectations at both sites therefore can best be discussed and accorded in advance. Active participation by pediatric oncologists at both partner sites is essential and therefore recommended. 9
ACCEPTED MANUSCRIPT Conflicts of interest None. ACKNOWLEDGEMENTS We are grateful for the grant received from the Noord-Zuid Programma. This foundation supports various outreach projects between the Netherlands, a highincome country on Northern hemisphere, and low or middle-income countries on Southern hemisphere.
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ACCEPTED MANUSCRIPT [24] Wilimas JA, Ribeiro RC. Pediatric Hematology-Oncology Outreach for Developing Countries. Hematol Oncol Clin North Am 2001;15:775–87. [25] Haris I. Using of teleconference as a medium to establish an ‘e-global-learningsystem’: An experience of 1000guru-association on facilitates open and distance learning activities with schools in indonesia. Turkish Online J Distance Educ 2014;15:50–62. [26] Wallace JE, Lemaire JB, Ghali WA. Physician wellness: a missing quality indicator. Lancet 2009;374:1714–21. [27] Cazap E, Magrath I, Kingham TP, Elzawawy A. Structural Barriers to Diagnosis and Treatment of Cancer in Low- and Middle-Income Countries: The Urgent Need for Scaling Up. J Clin Oncol 2015;34:14-19. [28] Santiago TC, Jenkins JJ, Pedrosa F, Billups C, Quintana Y, Ribeiro RC, et al. Improving the histopathologic diagnosis of pediatric malignancies in a lowresource setting by combining focused training and telepathology strategies. Pediatr Blood Cancer 2012;59:221–5. [29] Harris SB, Leiter LA, Webster-Bogaert S, Van DM, O’Neill C. Teleconferenced educational detailing: diabetes education for primary care physicians. J Contin Educ Health Prof 2005;25:87–97. [30] Knaul F, Anderson B, Bradley C. Access to Cancer Treatment in Low-and Middle-Income Countries-An Essential Part of Global Cancer Control. Working Paper. Can. Treat. International 2010. Available from: https://ssrn.com/abstract=2055441. [31] Eke GK, Akani NA. Outcome of childhood malignancies at the university of port Harcourt teaching hospital: A call for implementation of palliative care. Afr Health Sci 2016;16:75–82. [32] Al Lamki Z. Improving Cancer Care For Children In The Developing World: Challenges And Strategies. Curr Pediatr Rev 2016. 2016;13:13-23 [33] Hannon B, Zimmermann C, Knaul FM, Powell RA, Mwangi-Powell FN, Rodin G. Provision of palliative care in low- and middle-income countries: Overcoming obstacles for effective treatment delivery. J Clin Oncol 2016;34:62–8.
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Table 1. Patients’ socio-demographic and clinical characteristics (n=53 patients) Characteristics
N
(%)
Gender Boys Girls
35 18
66% 34%
Age in years Mean ± SD Range
8.7 ± 5.4 0.4 - 17.6
Distance to hospital (n=45) <25 km 25-50km 50-100 km >100 km
3 12 23 7
7% 27% 51% 16%
Health Insurance (n=51) Yes No
48 3
94% 6%
Hospital Class (n=52) 3rd Class 2nd Class 1st Class VIP
33 8 8 3
63% 15% 15% 6%
Diagnosis Hematology tumor* Solid tumor** Brain Tumor Benign tumor*** Blood disorder**** Not confirmed*****
29 9 1 2 4 8
55% 17% 2% 4% 8% 15%
*Hematology tumor: acute lymphoblastic leukemia (n=20), acute myeloblastic leukemia (n=8), nonhodgkin lymphoma (n=1) **Solid tumor: osteosarcoma (n=2), nephroblastoma (n=1), nasopharyng carcinoma (n=1), immature teratoma (n=1), rhabdomyosarcoma (n=2), retinoblastoma (n=1), neuroblastoma (n=1). *** Benign tumor: histiocytosis (n=2) ****Blood disorder: beta thalassemia (n=1), aplastic anemia (n=1), deep vein thrombosis (n=1), Von Willebrand disease (n=1) *****Patient had no confirmed diagnosis at the time the teleconference was held
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ACCEPTED MANUSCRIPT Table 2. Diagnostic advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=41 patients)
Dutch advice*
N** (%)
Indonesian non-adherence (%)***
Laboratory test
28 (68%)
7 (25%)
Imaging
22 (54%)
7 (32%)
Physical examination
17 (41%)
1 (6%)
Revision pathology anatomy
12 (29%)
2 (17%)
Consultation with other department
12 (29%)
3 (25%)
Other
7 (17%)
0 (0%)
2 (5%)
0 (0%)
Make differential diagnosis Referral to case report literature
1 (2%)
0 (0%)
Look at different protocol
1 (2%)
0 (0%)
Family history taking
1 (2%)
0 (0%)
Do staging
1 (2%)
0 (0%)
Find focal infection
1 (2%)
0 (0%)
* Each patient could receive more than one diagnostic advice **Total number of times that this diagnostic advice was provided ***Total number of times that this diagnostic advice was not adhered to
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ACCEPTED MANUSCRIPT Table 3. Treatment advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=40 patients)
Dutch advice*
N** (%)
Indonesian non-adherence (%)***
Cancer treatment Change of protocol
15 (38%)
5 (33%)
Timing of chemotherapy course
6 (15%)
2 (33%)
Change of chemotherapy dosage
4 (10%)
2 (50%)
2 (5%)
1 (50%)
1 (2%)
0 (0%)
Transition curative to palliative treatment Transition palliative to curative treatment Supportive treatment Nutrition
12 (30%)
0 (0%)
Prevention tumor lysis syndrome
8 (20%)
1 (13%)
Antibiotics: duration
7 (17%)
0 (0%)
Pain relief
6 (15%)
0 (0%)
Transfusions
6 (15%)
0 (0%)
Consultation with other department
6 (15%)
0 (0%)
Antibiotics: dosage
5 (12%)
0 (0%)
Hygiene and living rules
2 (5%)
0 (0%)
Antiemetics
1 (2%)
0 (0%)
Physiotherapy
1 (2%)
0 (0%)
*Each patient could receive more than one treatment advice **Total number of times that this treatment advice was provided ***Total number of times that this treatment advice was not adhered to
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Table 4. Advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=53 patients)
Dutch advice
N (%)
Indonesian non-adherence (%)
No adjustment required
3 (6%)
Only diagnostic adjustment
10 (19%)
4 (40%)
Only treatment adjustment
9 (17%)
1 (11%)
Diagnostic and treatment adjustment
31 (58%)
8 (26%)
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ACCEPTED MANUSCRIPT Highlights:
Oncology outreach programs may help narrow disparities of knowledge. Through teleconferencing, knowledge can be shared to improve patient care. Active participation at both partner sites is essential and recommended. Different cultures and perspectives on work ethos need to be taken into account.
K. Handayani, M. Veening, W.A. Kors, E. Supriyadi, B.W. Indraswari, E. Kelling, A. J.P. Veerman, G.J.L. Kaspers, M.N. Sitaresmi, S. Mostert PII:
S2468-1245(18)30041-X
DOI:
10.1016/j.phoj.2018.09.002
Reference:
PHOJ 85
To appear in:
Pediatric Hematology Oncology Journal
Received Date:
19 April 2018
Accepted Date:
01 September 2018
Please cite this article as: K. Handayani, M. Veening, W.A. Kors, E. Supriyadi, B.W. Indraswari, E. Kelling, A.J.P. Veerman, G.J.L. Kaspers, M.N. Sitaresmi, S. Mostert, Pediatric OncologyHematology Outreach: Evaluation of Patient Consultations by Teleconferences between Indonesian and Dutch Academic Hospitals, Pediatric Hematology Oncology Journal (2018), doi: 10.1016/j.phoj.2018.09.002
This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT Pediatric Oncology-Hematology Outreach: Evaluation of Patient Consultations by Teleconferences between Indonesian and Dutch Academic Hospitals K Handayani, MDa, M Veening, MD,PhDb, WA Kors, MDb, E Supriyadi, MD,PhDc, BW Indraswari, MDc, E Kelling, MDb, AJP Veerman, MD,PhDb, GJL Kaspers, MD,PhDb,d, MN Sitaresmi, MD,PhDc, S Mostert, MD,PhDb
aPediatrics, bPediatric
Nyi Ageng Serang District Hospital, Yogyakarta, Indonesia
Oncology-Hematology, VU University Medical Center, Amsterdam, the Netherlands
cPediatric,
Oncology-Hematology, Universitas GadjahMada, Dr Sardjito Hospital, Yogyakarta,
Indonesia dPediatrics, ePrincess
Universitas GadjahMada, Dr Sardjito Hospital, Yogyakarta, Indonesia
Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Correspondence to: K Handayani, Pediatrics, Nyi Ageng Serang District Hospital, Yogyakarta, Indonesia (email:[email protected], telephone: +6285643133934)
Word count: Abstract: 274 words Main text: 3887 words
Key words: outreach program, childhood oncology-hematology, teleconference, adherence
Abbreviation: ALL
acute lymphoblastic leukemia
ACCEPTED MANUSCRIPT
Pediatric Oncology-Hematology Outreach: Evaluation of Patient Consultations by Teleconferences between an Indonesian and Dutch Academic Hospitals ABSTRACT Background Improving the quality of care in resource limited settings through an outreach program is challenging. Teleconferencing is increasingly being used and considered a breakthrough in medical education. We evaluated adherence with childhood oncologyhematology teleconferences between two academic hospitals in Indonesia and Netherlands. Methods Teleconferences held during 12 months between an Indonesian and a Dutch academic hospital were evaluated using a standardized form. Both adherence with diagnostic and treatment advices for individual patients were explored in medical records. Results During 38 teleconferences, difficult cases of 53 children were discussed by Dutch pediatric oncologists and Indonesian residents. Dutch oncologists advised diagnostic adjustments in 41 cases (77%). Most common diagnostic advices were: laboratory tests (68%), imaging (54%), physical examination (41%). Diagnostic advices were not adhered to in 12 children (30%). Common reasons for non-adherence were: not applicable in middle-income setting (25%), disagreement with Dutch advice (17%), CT scan is out of order (17%), patient died (17%). Dutch oncologists advised treatment adjustments in 40 cases (75%). Most common treatment advices were: change of protocol (38%), nutritional support (30%), prevention of tumor lysis syndrome (20%). Treatment advices were not adhered to in 9 children (22%). Common reasons for nonadherence were: poor condition of child (44%), not applicable in middle-income setting (22%), patient died (22%), disagreement with Dutch advice (11%). Twenty-four children (45%) died after teleconference was held. Twenty-nine children (55%) were alive. These children abandoned (38%), completed (31%) or were still under treatment (31%). Conclusion Through teleconferencing, knowledge between high and low or middle-income countries can be shared to improve patient care. Locally applicable advices are required. Active participation by pediatric oncologists at both partner sites is recommended.
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ACCEPTED MANUSCRIPT INTRODUCTION Survival of childhood cancer in high-income countries is around 75-80%, but frequently less than 35% in low and middle-income countries [1–3]. This large survival discrepancy is influenced by various factors related to availability of health-care facilities and health-care providers. For instance, in low and middle-income countries specialized oncology-hematology centers are scarce. Fewer medical specialists are available serving a larger population. Due to physician dual practices the time spent by medical specialists in public hospitals is limited. Often inexperienced doctors need to provide complicated oncological care without proper supervision. As a consequence, limited available knowledge and expertise becomes a main problem in treating oncology-hematology patients [4–6]. Oncology outreach programs between high-income countries and low or middleincome countries may help narrow these disparities of knowledge. Recently, teleeducation has widely been used and considered a breakthrough in medical education allowing consultation of individual patients. Transfer of knowledge through teleconferencing, as previously reported in a Brazilian-American and JordanianCanadian outreach program, may importantly improve patient care in low or middleincome countries [3,7–14]. Despite the international recognition and wide usage of teleconferences in outreach programs, little is known about the effectivenes of this tool. How well are the provided advices by the high-income country partner actually implemented and adhered to? The aim of this study was to evaluate adherence with teleconferences regarding childhood oncology-hematology patients between two hospitals in Indonesia and Netherlands. Both adherence with diagnostic and treatment advices were explored.
MATERIAL AND METHODS Setting The study was performed at Dr Sardjito Hospital in Yogyakarta, Indonesia and at VU University Medical Center in Amsterdam, the Netherlands. The departments of pediatric oncology at both centers have a twinning outreach program since 1992. In the past 26 years, the twinning partners have developed protocol-based therapies and multidisciplinary approach together. In addition, diagnostic facilities have been improve. Mutual site visits have been made. Training programs for doctors, nurses, and laboratory personnel have been organized. Medicines have been donated. Joined PhD programs have been conducted. Students have been exchanged. Knowledge and expertise have been started and gained at both partner sites. And a structured parental education program has been implemented [15–18]. Indonesia is a large middle-income country in Asia. It is in fact the third largest country of Asia and has a population of 258 million inhabitants. The Netherlands is a small high-income country in Europe. It has a population of 17 million inhabitants [19,20]. At Dr Sardjito Hospital, one of twenty-four academic hospitals in Indonesia, around 160-170 children are diagnosed with a malignancy per year. Four pediatric oncologists supervise the pediatric oncology department. At VU University Medical Center, one of six academic hospitals with a pediatric cancer center in the Netherlands, around 65-
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ACCEPTED MANUSCRIPT 70 children are diagnosed with a malignancy per year. Six pediatric oncologists supervise the pediatric oncology department.
Study Design This prospective descriptive study was conducted between April 1st 2014 and March 31th 2015. The aim was to evaluate the adherence with teleconferences regarding childhood oncology-hematology patients between Indonesia and Netherlands. Both adherence with diagnostic and treatment advices were explored in the medical records. The teleconferences were scheduled every week on Tuesday via Skype software. A structured standard form was designed by a panel of Dutch and Indonesian doctors and used during the teleconference study. This form was divided in three parts: A, B and C. The form facilitated the teleconference, minimized miscommunication due to the different languages spoken by the partners (Indonesian, Dutch and English), and structured the subsequent follow-up in the medical records. One day prior to the teleconference Indonesia sent the difficult cases they wanted to discuss to the Netherlands using form A by email. The selected and presented cases concerned children admitted at the Indonesian childhood oncology-hematology ward with complex diagnostic or treatment issues. Selection of cases was supervised by Indonesian pediatric oncologists. Form A described: a) Demographics (name, hospital number, date of birth, gender, distance home to hospital, type of health-insurance, hospital class at diagnosis); b) Diagnostic status of patient (physical examination, clinical diagnosis, lab, imaging, pathology (PA), consultant, conclusiveness of PA, completeness of staging, and (change of) work diagnosis during course of disease); c) Treatment status of patient (provision of treatment, treatment protocol, change of treatment protocol during course of treatment). In addition, the Indonesian team noted and subsequently specified whether they requested a consultation about diagnostics and /or treatment. After the teleconference between the Indonesian and Dutch team was held, the Dutch team sent their diagnostic and treatment evaluation and advices to Indonesian team using form B by email. Form B summarized: a) Type of teleconference (date, attendence list, person who verbally presented teleconference at Indonesian and Dutch side, and whether a technical problem was encountered); b) Diagnostic evaluation (adjustments required or not) and advice by the Netherlands (revision PA, physical examination, lab, imaging, consultant, other advice); c) Treatment evaluation (adjustments required or not) and advice by the Netherlands (consultant, change of protocol, timing of chemotherapy course, transition from curative to palliative treatment, antibiotics dosage and duration, nutrition, pain relief, transfusions, antiemetics, prevention tumor lysis syndrome, bladder protection, hygiene and living rules, other advice). One month after the teleconference had been held adherence with the Dutch advices was evaluated in the patients’ medical record using form C. In case of non-adherence, the underlying reasons for non-adherence by the Indonesian team were documented by independent researcher. Form C contained five non-adherence categories for both the diagnostic and treatment advice: a) Dutch advice (unclear/ complex/ disagreement/ insignificant/ not applicable 3
ACCEPTED MANUSCRIPT in middle-income setting); b) Health-care providers Indonesia (Doctors: forgetting/ lack of time/lack of knowledge/unavailable/refusal, Consultant: forgetting/ lack of time/lack of knowledge/unavailable/refusal; c) Facilities Indonesia (unavailable PA method, unavailable imaging device/ unavailable lab test/ waiting list); d) Parents/child (no money/ no health-insurance coverage/ refusal parents or child/ treatment abandonment/ religion/ complementary alternative treatment/ fear/ family conflict/ forgetting/ poor condition child/ patient died/ travel distance); e) Other (specify). Medical records follow-up to check the patients’ condition was performed after 3, 6 and 12 months. It was recorded whether patients had died or were alive, and whether they abandoned treatment, completed treatment or still underwent treatment. Two illustrative case reports were included to elucidate the nature of the teleconferences, the complexity of the medical issues raised, and the underlying reasons for either adherence or non-adherence with the provided diagnostic and treatment advices at the time of evaluation. Data Analysis Frequency distributions, median, means and standard deviations were assessed. Data management and analysis was performed with SPSS version 22 and microsoft Excel. RESULTS Between April 2014 and March 2015, 53 teleconferences could have taken place on Tuesday. In total, 38 teleconferences (72%) were succesfully held. The reasons why 15 teleconferences (28%) were not held were: technical problem with internet connection (n=9), public holiday in Indonesia (n=2), illness of Indonesian pediatric oncologists (n=2), public holiday in the Netherlands (n=1), and unknown (n=1) Attendance of teleconferences In Indonesia the 38 teleconferences were attended by: a pediatric oncologist (in 63% of all teleconferences), a pediatrician (in 13% of teleconferences), 3-4 residents (100% of all teleconferenes), and a fellow (47% of teleconferences). In Indonesia the teleconferences were always prepared in writing and verbally presented by a resident (100%). In the Netherlands the 38 teleconferences were attended by: a pediatric oncologist (in 100% of all teleconferences), and a pediatrician (in 5% of teleconferences). In the Netherlands the teleconferences were always verbally presented and the format was subsequently filled in by a pediatric oncologist (100%). Demographics During the 38 teleconferences, cases of 53 children had been discussed. Table 1 shows patients’ socio-demographic and clinical characteristics. The diagnosis had been made by: physical examination (91%), laboratory tests (85%), imaging (64%), pathology anatomy (44%), and a consultant (31%). The pathology results were conclusive in 26% of cases. Staging was complete in 6% of cases. In 7% of cases the diagnosis had been changed during the course of the disease. Diagnostics Indonesia requested consultation about diagnostics in 37 of the total 53 cases (70%), but according to the Dutch evaluation the diagnostics needed adjustments in 41 cases 4
ACCEPTED MANUSCRIPT (77%). Thus in 4 cases the Dutch provided diagnostic advice without receiving an Indonesian request for it. Table 2 illustrates the diagnostic advices provided by the Netherlands and whether these advices were adhered to by Indonesia. The most common diagnostic adjustments advised by the Netherlands were: laboratory tests (68%), imaging (54%), and physical examination (41%). The Dutch diagnostic advice least adhered to by Indonesia was: laboratory tests (non-adherence rate of 25%). Of the total 41 children whose diagnostics needed adjustments according to the Netherlands, the advice was not adhered to in 12 children (30%). Reasons for not following the Dutch diagnostic advice in these 12 children were: not applicable in middle-income setting (n=3, 25%) as either laboratory test (n=2) or MRI scan (n=1) was unavailable, disagreement with Dutch advice (n=2, 17%), CT scan was out of order (n=2, 17%), patient died (n=2, 17%), forgotten by Indonesian health-care providers (n=1, 8%), Mantoux test was out of stock (n=1, 8%), and poor condition of child (n=1, 8%). Treatment Of the 53 patients, 33 (62%) received treatment with either curative (n=31, 94%) or palliative (n=2, 6%) intent. A treatment protocol was used in 27 children (81%). The treatment protocol had changed during the course of treatment in 10 of these children (37%). Indonesia requested consultation about treatment in 38 of the total 53 cases (72%), but according to the Dutch evaluation the treatment needed adjustments in 40 cases (75%). Thus in 2 cases the Dutch provided treatment advice without receiving an Indonesian request for it. Table 3 illustrates the treatment advices provided by the Netherlands and whether these advices were adhered to by Indonesia. The most common cancer treatment adjustments advised by the Netherlands were: change of protocol (38%) and timing of chemotherapy course (15%). The Dutch cancer treatment advices least adhered to by Indonesia were: change of chemotherapy dosage (non-adherence rate of 50%) and transition from curative to palliative treatment (non-adherence rate of 50%). The most common supportive treatment adjustments advised by the Netherlands were: nutrition (30%) and prevention of tumor lysis syndrome (20%). The Dutch supportive treatment advice least adhered to by Indonesia was: prevention of tumor lysis syndrome (nonadherence rate of 13%). Of the total 40 children whose treatment needed adjustments according to the Netherlands, the advice was not adhered to in 9 children (22%). Reasons for not following the Dutch treatment advice in these 9 children were: poor condition of child (n=4, 44%), not applicable in middle-income setting (n=2, 22%) as pathology anatomy method was unavailable, patient died (n=2, 22%), and disagreement with Dutch advice that it does not concern a malignancy (n=1, 11%).
Follow-up Table 4 illustrates that of all 53 children discussed during the teleconferences, the diagnostics and/or treatment of 50 children (94%) needed adjustments according to
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ACCEPTED MANUSCRIPT the Netherlands. Overall, the provided Dutch diagnostics and/ or treatment advices were not adhered to in 13 children (26%). Of the 53 discussed children, the conditions of 8 children (15%) were discussed during 2-5 successive teleconferences as more complications arose. Of all 53 children discussed during the teleconferences, 24 children (45%) died. These children died; <3 months (50%), 3-6 months (33%), >6 months (17%) after the teleconference was held. In total, 29 children (55%) were alive at the time of assessment. These children abandoned treatment (38%), completed treatment (31%), or still underwent treatment (31%).
CASE REPORT 1 Boy of 13 years old, diagnosed with nasopharyngeal carcinoma, received curative treatment with chemotherapy and radiotherapy according to 2002 Nasopharynx Carcinoma Protocol (4th week) with clinical good response. Staging before start of chemotherapy was not performed, so it was not clear whether there were metastases upfront. The patient was admitted with fever, anemia, leukocytosis and trombocytosis. Physical examination showed that the patient was in a malnourished poor condition with dyspnea and decreased vesicular sounds on the right hemithorax. The Indonesian doctors suspected that there was atelectasis of the right lung caused by pleural metastasis and wanted to change curative into palliative treatment. During the teleconference, Indonesia requested consultation about diagnostics. Which diagnostic procedure could establish the diagnosis pleural metastasis? However, the Dutch oncologists disagreed with the Indonesian doctors and did not think this child had pleural metastasis. The Dutch thought that it was more likely that the patient suffered from an intercurrent infection considering the fact that there was a good clinical response to the chemotherapy given and the increased temperature of the patient. The Dutch oncologists mentioned that pleural metastasis could be excluded by a CT-thorax, but that a pneumonia was more likely. Therefore the Dutch advised to repeat C Reactive Protein, which was elevated, and perform an X-thorax, which showed atelectasis in the superior lobe and pleural effusion of the right lung. A CTthorax was performed eight days after the X-thorax because the dyspnea persisted, which showed pneumonia and pleural metastasis. Indonesia also requested consultation about treatment. Should this patient be treated by radiotherapy or with chemotherapy as part of palliative treatment? The Dutch oncologists mentioned that patients with pleural metastasis have stage IV disease and can still be cured. Therefore the Dutch advised to continue curative treatment and not change to palliative treatment. The patient also required intravenous broadspectrum antibiotics. The Indonesian doctors adhered to the Dutch treatment advice and continued curative treatment. The patient was discharged from hospital in a good condition.
CASE REPORT 2 Boy of 13 years old, diagnosed with relapsed acute lymphoblastic leukemia (ALL), received induction treatment according to ALL R3 Protocol (3rd week). Physical examination showed that the patient was in a malnourished poor condition with 6
ACCEPTED MANUSCRIPT peripheral pitting edema, dyspnea, subcostal retractions, and decreased vesicular sounds in the left lung. Laboratory tests showed hypoalbuminemia and thrombocytopenia. Chest X-ray showed massive pleural effusion and suspected left diaphragmatic eventration. The Indonesian doctors thought that the patient suffered from tuberculosis. Therefore pleural fluid was tapped and sent to the laboratory for tuberculosis and to confirm tuberculosis and secondary bacterial infection. The patient was treated with broadspectrum antibiotics and albumin transfusion. During the teleconference, Indonesia requested consultation about diagnostics. Which diagnostic procedure could establish the diagnosis left diaphragmatic eventration? However, the Dutch oncologists advised to focus on the infection. The Dutch agreed that the child may have tuberculosis and advised to wait for the pleural fluid laboratory results, to perform a Mantoux test, and to daily repeat the physical examination to check the respiratory condition of the patient. Indonesia adhered to the diagnostic advices. Eventhough Indonesia did not request consultation about treatment, the Dutch thought treatment adjustments were needed. The Dutch explained that ALL R3 protocol used for relapsed ALL patients contains PEG-polyethylene glycol-conjugated asparaginase every 2 weeks, and advised to render this medication despite the patients’ poor clinical condition as this drug does not suppress the bone marrow and the leukemia required treatment. Alternatively, if this drug would not be available at the Dr Sardjito Hospital, native L-asparaginase could also be given 3 times per week, preferably in a dose of 5000U/m2. However, Indonesia disagreed with the Dutch treatment recommendation because of the poor clinical condition of the boy and decided to give native Lasparaginase 2 times instead. Subsequently the patient suffered from an allergic reaction to this medication. The boy died 6 days after the teleconference was held. It is unclear whether the boy died of progressive leukemia, tuberculosis infection or another complication or disease.
DISCUSSION Improving the quality of care in resource limited settings through an outreach program is challenging. Recently, teleconferencing has been widely used for consultation on individual patients and is considered a breakthrough in medical education. Teleconferences between partners from high-income countries and low or middleincome countries promote two-way interactions, and facilitate learning and sharing of knowledge between the experts. Despite some technical obstacles in its implementation, tele-education is used in many medical schools and institutions across the globe and regarded as an important tool to narrow the geographical distance and disparities of knowledge. It facilitates collaboration and networking across nations, and stimulates the learning proccess in medicine [11–14,21–26]. Despite the international recognition and wide usage of teleconferences in outreach programs, little is known about the effectivenes of this tool. We evaluated adherence with childhood oncology-hematology teleconferences between Indonesia and Netherlands. During one year 38 hematology-oncology teleconferences were succesfully held. However, we also learned that 28% of teleconferences could not take place. The most common reason was a technical problem with the internet connection. Previous studies also reported that technical problems with the Skype software via
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ACCEPTED MANUSCRIPT internet were quite common at great distances. Sometimes these technical failures took a long time to be resolved leading to the interruption or even cancellation of teleconferencing sessions [22,23]. During 38 teleconferences the conditions of 53 patients were discussed. Our study showed that in 94% of presented cases, adjustments were indeed required according to the Dutch team. This finding might illustrate that still a large knowledge gap must be bridged in low or middle-income countries. For example, in the first case report the Dutch team disagreed with their Indonesian colleagues that a child with nasopharynx carcinoma required palliative instead of curative treatment. The Dutch oncologists recommended to continue curative treatment, and after treatment with broadspectrum antibiotics the child recovered and was discharged from hospital in a good clinical condition. This underlines the importance of outreach programs. Education and training of all involved professionals, residents, pediatricians, fellows and pediatric oncologists, are fundamental to improve patient care and outcomes [4]. Our study clearly illustrates the diagnostic difficulties medical teams in low and middleincome countries encounter. In 94% of the presented cases proper staging before start of treatment was not performed. Pathology results were not conclusive in 74% of cases. Yet, determining the accurate diagnosis and risk group is essential information for the treatment of a child with cancer. Inadequate diagnosis or staging may lead to the wrong treatment. In low and middle-income countries the reasons for poor diagnostics are numerous. Advanced diagnostic immune techniques may not be available, poor surgery may result in low quality biopsies, conservation of biopsies may be improper, and pathologists may lack adequate training [27,28]. Our study therefore underlines the importance for an in-depth investigation of the diagnostic problems faced at the Dr Sardjito Hospital. We found that in most cases both diagnostic and treatment adjustments were required according to the Dutch partner. When only a diagnostic adjustment was recommended, non-adherence (40%) was most common. Primarily because the diagnostic test was locally not available. In case both a diagnostic and treatment adjustment was required non-adherence occurred in 1 out of every 4 children. Non-adherence (11%) was least common if only a treatment advice was provided. Reasons for non-adherence were mainly that the advice was not regarded as applicable in a middle-income setting, disagreement with the Dutch advice and the poor condition of the children. This is clearly illustrated by the second case report in which the recommended drug by the Dutch oncologists was not available and the condition of the child with ALL was considered too poor by the Indonesian team to administer the adviced dosage of an alternative drug. A limitation of teleconferencing is that one of the participating partners cannot see the real situation, leading to advices that can be disagreed upon by the colleague treating the children [29]. The least adhered to diagnostic advices were imaging and laboratory tests. Although good childhood cancer care requires many and advanced diagnostic tests, availability of imaging facilities and laboratory tests may be restricted in low or middle-income countries [4–6,30]. The Dr Sardjito Hospital has only one MRI scan and one CT scan serving over 1000 patients leading to long waiting lists. When one of these imaging devices breaks down its repair can take a long time. Patients who can afford it, will then be referred to a private clinic. The others need to wait.
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ACCEPTED MANUSCRIPT The least adhered to treatment advices were change of chemotherapy dosage and transition from curative to palliative treatment. Taking the poor clinical condition of the children into account, the Indonesian team considered the dosage recommendations by their Dutch colleagues sometimes as inappropriate. It is well-known that when chemotherapeutic protocols fit for high-income countries are used in low or middleincome countries, this may result in excessive treatment toxicity, high mortality, and increased treatment abandonment. Therefore protocols in these settings require modification . Reasons for the non-adherence and resistance to the Dutch advice to start palliative treatment are multiple. First of all, integration of palliative care in medical delivery systems has not been established yet at the Dr Sardjito Hospital. Resources and regimens for palliation are therefore still limited. Some oncologists prefer to continue curative treatment, some state that they want to respect the choice of parents, whereas others consider palliative care too time consuming. Personal perspectives of health professionals hereby seem to determine whether a child is enabled to receive good palliative care. It has been well documented that attitude shifts are required in low and middle-income countries towards palliative and end-of-life care [31–33]. This finding certainly deserves more attention in our future collaboration. Dutch pediatric oncologists always attended and verbally presented their insights during the teleconferences, whereas at Indonesian academic institute rotating junior residents were given this duty as part of their pediatric traineeship. The Indonesian pediatric oncologists, serving larger patient populations than their Dutch colleagues, were content with the active participation of residents. Teleconferencing was regarded as a time efficient method to improve patient care. However, the Dutch pediatric oncologists would prefer to discuss complex cases in future teleconferences with the Indonesian pediatric oncologists instead. As residents only work on the pediatric oncology ward for a short period of 4 weeks, the Dutch team felt that too much time spent on explaining the basics of pediatric cancer care and that the effect of their education did not have a lasting effect. Overall, this study teaches us that the nature of outreach teleconferencing implies that the high-income partner provides advice without complete knowledge of setting and patient. As a result the high-income based advice may not always be appropriate for a resource-limited setting. Many aspects of local resources and cultural issues require diagnostic and treatment adaptatioins in low or middle-income countries. This study has some limitations. First of all, studies on adherence tend to increase adherence of the involved medical teams during the research period. In addition, our study took place at a single Indonesian hospital involving a Dutch-Indonesian outreach program and its results can therefore not be extrapolated to other outreach programs between other nations. Participants’ satisfaction with the teleconference was not evaluated. We conclude that through teleconferencing knowledge between high and low or middle-income countries can be shared to improve patient care. Provided advices should be applicable in middle-income settings. Successful teleconferencing requires that partners at both sites need to agree and be satisfied with not only their own but also their partners’ role in it. Different cultures and perspectives on work ethos need to be taken into account. Expectations at both sites therefore can best be discussed and accorded in advance. Active participation by pediatric oncologists at both partner sites is essential and therefore recommended. 9
ACCEPTED MANUSCRIPT Conflicts of interest None. ACKNOWLEDGEMENTS We are grateful for the grant received from the Noord-Zuid Programma. This foundation supports various outreach projects between the Netherlands, a highincome country on Northern hemisphere, and low or middle-income countries on Southern hemisphere.
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ACCEPTED MANUSCRIPT REFERENCES [1]
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ACCEPTED MANUSCRIPT [24] Wilimas JA, Ribeiro RC. Pediatric Hematology-Oncology Outreach for Developing Countries. Hematol Oncol Clin North Am 2001;15:775–87. [25] Haris I. Using of teleconference as a medium to establish an ‘e-global-learningsystem’: An experience of 1000guru-association on facilitates open and distance learning activities with schools in indonesia. Turkish Online J Distance Educ 2014;15:50–62. [26] Wallace JE, Lemaire JB, Ghali WA. Physician wellness: a missing quality indicator. Lancet 2009;374:1714–21. [27] Cazap E, Magrath I, Kingham TP, Elzawawy A. Structural Barriers to Diagnosis and Treatment of Cancer in Low- and Middle-Income Countries: The Urgent Need for Scaling Up. J Clin Oncol 2015;34:14-19. [28] Santiago TC, Jenkins JJ, Pedrosa F, Billups C, Quintana Y, Ribeiro RC, et al. Improving the histopathologic diagnosis of pediatric malignancies in a lowresource setting by combining focused training and telepathology strategies. Pediatr Blood Cancer 2012;59:221–5. [29] Harris SB, Leiter LA, Webster-Bogaert S, Van DM, O’Neill C. Teleconferenced educational detailing: diabetes education for primary care physicians. J Contin Educ Health Prof 2005;25:87–97. [30] Knaul F, Anderson B, Bradley C. Access to Cancer Treatment in Low-and Middle-Income Countries-An Essential Part of Global Cancer Control. Working Paper. Can. Treat. International 2010. Available from: https://ssrn.com/abstract=2055441. [31] Eke GK, Akani NA. Outcome of childhood malignancies at the university of port Harcourt teaching hospital: A call for implementation of palliative care. Afr Health Sci 2016;16:75–82. [32] Al Lamki Z. Improving Cancer Care For Children In The Developing World: Challenges And Strategies. Curr Pediatr Rev 2016. 2016;13:13-23 [33] Hannon B, Zimmermann C, Knaul FM, Powell RA, Mwangi-Powell FN, Rodin G. Provision of palliative care in low- and middle-income countries: Overcoming obstacles for effective treatment delivery. J Clin Oncol 2016;34:62–8.
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Table 1. Patients’ socio-demographic and clinical characteristics (n=53 patients) Characteristics
N
(%)
Gender Boys Girls
35 18
66% 34%
Age in years Mean ± SD Range
8.7 ± 5.4 0.4 - 17.6
Distance to hospital (n=45) <25 km 25-50km 50-100 km >100 km
3 12 23 7
7% 27% 51% 16%
Health Insurance (n=51) Yes No
48 3
94% 6%
Hospital Class (n=52) 3rd Class 2nd Class 1st Class VIP
33 8 8 3
63% 15% 15% 6%
Diagnosis Hematology tumor* Solid tumor** Brain Tumor Benign tumor*** Blood disorder**** Not confirmed*****
29 9 1 2 4 8
55% 17% 2% 4% 8% 15%
*Hematology tumor: acute lymphoblastic leukemia (n=20), acute myeloblastic leukemia (n=8), nonhodgkin lymphoma (n=1) **Solid tumor: osteosarcoma (n=2), nephroblastoma (n=1), nasopharyng carcinoma (n=1), immature teratoma (n=1), rhabdomyosarcoma (n=2), retinoblastoma (n=1), neuroblastoma (n=1). *** Benign tumor: histiocytosis (n=2) ****Blood disorder: beta thalassemia (n=1), aplastic anemia (n=1), deep vein thrombosis (n=1), Von Willebrand disease (n=1) *****Patient had no confirmed diagnosis at the time the teleconference was held
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ACCEPTED MANUSCRIPT Table 2. Diagnostic advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=41 patients)
Dutch advice*
N** (%)
Indonesian non-adherence (%)***
Laboratory test
28 (68%)
7 (25%)
Imaging
22 (54%)
7 (32%)
Physical examination
17 (41%)
1 (6%)
Revision pathology anatomy
12 (29%)
2 (17%)
Consultation with other department
12 (29%)
3 (25%)
Other
7 (17%)
0 (0%)
2 (5%)
0 (0%)
Make differential diagnosis Referral to case report literature
1 (2%)
0 (0%)
Look at different protocol
1 (2%)
0 (0%)
Family history taking
1 (2%)
0 (0%)
Do staging
1 (2%)
0 (0%)
Find focal infection
1 (2%)
0 (0%)
* Each patient could receive more than one diagnostic advice **Total number of times that this diagnostic advice was provided ***Total number of times that this diagnostic advice was not adhered to
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ACCEPTED MANUSCRIPT Table 3. Treatment advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=40 patients)
Dutch advice*
N** (%)
Indonesian non-adherence (%)***
Cancer treatment Change of protocol
15 (38%)
5 (33%)
Timing of chemotherapy course
6 (15%)
2 (33%)
Change of chemotherapy dosage
4 (10%)
2 (50%)
2 (5%)
1 (50%)
1 (2%)
0 (0%)
Transition curative to palliative treatment Transition palliative to curative treatment Supportive treatment Nutrition
12 (30%)
0 (0%)
Prevention tumor lysis syndrome
8 (20%)
1 (13%)
Antibiotics: duration
7 (17%)
0 (0%)
Pain relief
6 (15%)
0 (0%)
Transfusions
6 (15%)
0 (0%)
Consultation with other department
6 (15%)
0 (0%)
Antibiotics: dosage
5 (12%)
0 (0%)
Hygiene and living rules
2 (5%)
0 (0%)
Antiemetics
1 (2%)
0 (0%)
Physiotherapy
1 (2%)
0 (0%)
*Each patient could receive more than one treatment advice **Total number of times that this treatment advice was provided ***Total number of times that this treatment advice was not adhered to
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Table 4. Advice provided by the Dutch team, and non-adherence with advice by Indonesian team (n=53 patients)
Dutch advice
N (%)
Indonesian non-adherence (%)
No adjustment required
3 (6%)
Only diagnostic adjustment
10 (19%)
4 (40%)
Only treatment adjustment
9 (17%)
1 (11%)
Diagnostic and treatment adjustment
31 (58%)
8 (26%)
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ACCEPTED MANUSCRIPT Highlights:
Oncology outreach programs may help narrow disparities of knowledge. Through teleconferencing, knowledge can be shared to improve patient care. Active participation at both partner sites is essential and recommended. Different cultures and perspectives on work ethos need to be taken into account.