Delayed access to care and unmet burden of pediatric surgical disease in resource-constrained African countries

Delayed access to care and unmet burden of pediatric surgical disease in resource-constrained African countries

Accepted Manuscript Delayed access to care and unmet burden of pediatric surgical disease in resource-constrained African countries Yasmine Yousef, A...

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Accepted Manuscript Delayed access to care and unmet burden of pediatric surgical disease in resource-constrained African countries

Yasmine Yousef, Angela Lee, Frehun Ayele, Dan Poenaru PII: DOI: Reference:

S0022-3468(18)30393-2 doi:10.1016/j.jpedsurg.2018.06.018 YJPSU 58725

To appear in:

Journal of Pediatric Surgery

Received date: Revised date: Accepted date:

26 February 2018 24 April 2018 13 June 2018

Please cite this article as: Yasmine Yousef, Angela Lee, Frehun Ayele, Dan Poenaru , Delayed access to care and unmet burden of pediatric surgical disease in resourceconstrained African countries. Yjpsu (2018), doi:10.1016/j.jpedsurg.2018.06.018

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 Delayed Access to Care and Unmet Burden of Pediatric Surgical Disease in Resource-Constrained African Countries

Division of Pediatric General and Thoracic Surgery The Montreal Children's Hospital, McGill University Health Centre 1001 Decarie Blvd, Room B04.2028 Montreal, Quebec, H4A3J1 Canada

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MyungSung Christian Medical Center MyungSung Medical College PO Box 15478 Addis Ababa, Ethiopia

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1

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*co-first authors

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Corresponding author :

Yasmine Yousef MDCM, MSc (c)

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Division of Pediatric General and Thoracic Surgery

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The Montreal Children's Hospital 1001 Decarie Blvd, Room B04.2028

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Montreal, Quebec H4A 3J1

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CANADA

Phone : 514 2951394

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E-mail: [email protected]

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Yasmine Yousef1*, Angela Lee1*, Frehun Ayele2, Dan Poenaru1

ACCEPTED MANUSCRIPT Abstract Background: The purpose of this study was to estimate the unmet burden of surgically correctable congenital anomalies in African low- and middle-income countries (LMICs). Methods We conducted a chart review of children operated for cryptorchidism, isolated cleft lip,

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hypospadias, bladder exstrophy and anorectal malformation at an Ethiopian referral hospital

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between January 2012 – July 2016 and a scoping review of the literature describing the

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management of congenital anomalies in African LMICs. Procedure numbers and age at surgery were collected to estimate mean surgical delays by country and extrapolate surgical backlog. The

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unmet surgical need was derived from incidence-based disease estimates, established disability weights, and actual surgical volumes.

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Results

The chart review yielded 210 procedures in 207 patients from Ethiopia. The scoping review

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generated 42 data sets, extracted from 36 publications, encompassing: Benin, Egypt, Ghana, Ivory Coast, Kenya, Nigeria, Madagascar, Malawi, Togo, Uganda, Zambia, and Zimbabwe. The

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largest national surgical backlog was noted in Nigeria for cryptorchidism (209,260 cases) and cleft lip (4,154 cases), and Ethiopia for hypospadias (20,188 cases), bladder exstrophy (575 cases)

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and anorectal malformation (1,349 cases). Conclusion

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This data supports the need for upscaling pediatric surgical capacity in LMICs to address the significant surgical delay, surgical backlog, and unmet prevalent need.

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KEYWORDS: Pediatric surgery; Surgical delay; low-resource; global surgery

Type of Study: Retrospective study and Review Article Level of Evidence: III

Abbreviations: LMICs (low- and middle-income countries), DALYs (Disability adjusted life years)

ACCEPTED MANUSCRIPT 1.0 Introduction There exist significant inequities in access to surgical care across the globe, especially in low- and middle-income countries (LMICs)[1, 2]. Though recent publications have highlighted the importance of surgical care in national surgical plans, there has been little mention of the

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surgical care of children[3-5]. Bearing in mind that children compose up to 50% of the

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population in LMICs, addressing inequities in their surgical care is primordial [6, 7]. Congenital anomalies contribute 25-39 million disability-adjusted life years (DALYs)

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worldwide, with a staggering 94% of anomalies occurring in LMICs[8, 9]. Studies demonstrated that surgical management of curable pediatric surgical disease is economically feasible and has

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the potential to avert more than 60% of associated DALYs depending on the condition[10, 11].

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However, limited resources and inadequate health care structures coupled with a high burden of

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disease have resulted in persistently high mortality rates for pediatric surgical conditions that are otherwise treatable[12].

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Due to lack of appropriate data, assessment of the unmet surgical burden in children is

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difficult to quantify[13]. Our group has previously proposed surgical delay and consequent surgical backlog as a more intuitive measure of unmet burden of treatable surgical disease using

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DALYs[14, 15]. While those early calculations were performed using cleft lip as the marker condition, little is known about other congenital conditions with delayed access to care in lowresource settings.

This study therefore aims to estimate the surgical delay, surgical backlog, and unmet burden of disease for five key congenital anomalies in African LMICs: cryptorchidism, cleft lip, hypospadias, bladder exstrophy, and anorectal malformation. 2.0 Methods

ACCEPTED MANUSCRIPT We conducted a retrospective chart review combined with a scoping review of the age at surgery for five congenital anomalies in African LMICs; cryptorchidism, cleft lip, hypospadias, bladder exstrophy, and anorectal malformation. All data was combined to estimate surgical delay, surgical backlog, and unmet surgical burden. Retrospective chart review

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2.1

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MyungSung Christian Medical Center (MCM) is a non-governmental, non-profit hospital

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situated in Addis Ababa, Ethiopia. It is one of the few centers within Ethiopia with specialized pediatric surgical services.

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A retrospective review of all surgical procedures performed at MCM between January

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2012 – July 2016 for patients up to 18 years of age operated for one of the five chosen congenital anomalies. These conditions were chosen based on their relative prevalence at this institution and

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on the existence of an optimal operative age for each. Date of surgery, diagnosis, name of

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procedure, age at surgery and gender were extracted. For patients that had multiple surgeries for the same condition during the study period, only the patient’s earliest surgery was included.

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Ethics approval was provided by the MCM/MyungSung Medical College Research Ethics

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Committee. Scoping review

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A scoping review is a method of identifying gaps in existing literature and evidence surrounding a research area irrespective of the quality of data[16]. Unlike a systematic review, the research question is more broad, and typically synthesizes qualitative, rather than quantitative, data [17]. For this scoping review, an electronic search was conducted of five databases: AfricaWide Information (Ebsco), Embase (Ovid), Medline (Ovid), PubMed (NLM) and Web of

ACCEPTED MANUSCRIPT Science (Thomson Reuters). The search strategy was developed in collaboration with a medical librarian. The search encompassed the following terms and related variations: (1) congenital; (2) surgery; (3) LMIC within Africa; and (4) pediatrics, found as text words in the title, abstract or keyword fields, as well in the Medical Subject Headings (MesH); (5) published in all languages.

Study Selection

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2.2.1

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Animal studies were excluded. A sample of the search strategy is detailed in Appendix A.

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Studies were included if they: 1) involved medical centers in African countries considered low-income or low- and middle-income countries (as defined by the 2015 World

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Bank status) [18]; 2) focused on surgical procedures for cryptorchidism, isolated cleft lip,

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hypospadias, bladder exstrophy, and anorectal malformation; 3) included age of patients at time of surgery; 4) presented data for patients under the age of 18 separately from adult populations; 5)

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included more than five patients; and 6) were published between 1995 - 2016. Mixed adult –

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pediatric studies that separately reported the age at surgery of the children were included. Studies that presented data for more than one of the congenital anomalies previously listed were also

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included. In the case of cleft lip surgery, studies with a mean/median age at surgery between 0 –

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19 years with minimal adult outliers were also included to more accurately identify the surgical delay for this condition, which in LMICs is occasionally treated well into adult life. Studies that

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examined cleft lip both with and without palate were included only if they reported the age at surgery for isolated cleft lip separately. Publications that did not separate secondary from primary procedures for the same condition were excluded. All titles and abstracts were screened by two independent reviewers, with disagreements reviewed by a senior author. Information was extrapolated from eligible studies by a single

ACCEPTED MANUSCRIPT reviewer using a pre-specified data extraction sheet and included condition, age at surgery, and country of origin. 2.3

Calculation of Surgical Backlog, Surgical Delay, and Unmet Surgical Burden Definitions and calculation methods for surgical delay, surgical backlog, and unmet

Figure 1

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surgical burden are detailed in Figure 1. All population statistics were retrieved from the World

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Factbook 2014 edition[19](Appendix B). Disease incidence was derived from the literature[20-

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25]. Normative data regarding disability weights was used to estimate unmet surgical burden[2628] (Appendix C). The ideal age of surgery was determined from current guidelines[29-

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32](Appendix C). For conditions lacking clear recommendations, expert opinion was used[33]. If

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the ideal age was given as a range, the median value was used to calculate surgical delay. Surgical delay was calculated for all data collected from the scoping review and the retrospective

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study and stratified by condition and by country. When procedures where conducted within the

3.0 Results Retrospective Study

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3.1

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recommended period, surgical delay was considered to be zero.

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The retrospective study reviewed 210 procedures performed on 207 patients. The number of cases, median age and age range by diagnoses are found under Table 1. The mean surgical delay

Table 1

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and unmet prevalent need per condition specific to the retrospective study, are found under Ethiopia in Table 2. 3.2

Table 2

Scoping Review The scoping review identified a total of 4,355 abstracts of which 36 publications were

included (Figure 2). From these 36 publications, 43 data sets were retrieved which included 2,864 surgical procedures in 13 African countries. All included publications are detailed in Appendix D.

Figure 2

ACCEPTED MANUSCRIPT 3.3

Surgical Delay, Surgical Backlog and Unmet Surgical Burden Data was obtained from 13 African countries: Benin, Cote d’Ivoire, Egypt, Ethiopia,

Ghana, Kenya, Madagascar, Malawi, Nigeria, Togo, Uganda, Zambia and Zimbabwe. There were, however, distinct differences in study numbers across the countries: 15 of 36 included

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publications (covering four conditions) where from Egypt, while 11 (covering all conditions)

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originated from Nigeria. Data from Kenya was extracted from two studies and covered three

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congenital anomalies. All other countries had only one publication regarding one congenital anomaly. All Ethiopian data was derived solely from the retrospective study conducted at MCM

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– there no studies available.

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Egypt and Nigeria had the shortest surgical delays for cryptorchidism, hypospadias, bladder exstrophy and anorectal malformation. The extrapolated national surgical backlog and

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unmet prevalent need were greatest in Nigeria for cryptorchidism and cleft lip. Ethiopia had the

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largest surgical backlog associated with hypospadias and bladder exstrophy, due to prolonged surgical delay. Further details of the estimated mean national surgical delays as well as the

Table 3

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extrapolated national surgical backlogs are summarized in Tables 2 and 3. The backlog and Figure 3

4.0 Discussion

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unmet burden of disease data is also visualized in Figure 3 and 4.

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This is one of the first studies to quantify the surgical delays for children suffering from treatable congenital conditions on a multinational scale. As expected, surgical delay generates a significant unmet surgical burden and surgical backlog in many African LMICs. Across all conditions and populations studied, surgical delays averaged 2.1 years, with the longest delays encountered in hypospadias and cryptorchidism. These results are in keeping with a previous study comparing surgical delays between Canada and Kenya, where African children suffered

Figure 4

ACCEPTED MANUSCRIPT significant surgical delays in the management of hypospadias (17.2 months vs. 50 months; p < 0.001) and cryptorchidism (40.4 months vs 71.7 months; p < 0.001) compared to Canadian children [26]. Our findings are also consistent with other reports, and thus considered to be a true reflection of surgical delay for these conditions in African LMICs[34-36]. Neither

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cryptorchidism nor hypospadias are urgent conditions, and therefore not prioritized in a system

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where there are limited resources even for emergency cases[28, 37]. Though not life-threatening,

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such conditions can be associated with significant disability weights, and thus responsible for upwards of 75,000 DALYs per our findings[26-28]. Other congenital anomalies previously noted

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to have significant surgical delays include abdominal wall defects and cleft lip, findings mirrored

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in our current study [26].

Our study also clearly demonstrates the relationship between population size and birth rate

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on one side, and surgical delay, surgical burden and unmet need on the other. Traditionally,

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surgical delay in LMICs has been attributed to a severe shortage of health-care workers capable of treating complex congenital anomalies[1, 38-40]. Though this crisis of qualified surgical

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workforce in LMICs is a key contributing factor to surgical delay, it is not the sole cause of the

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large unmet surgical burden[41]. Unmet surgical burden and surgical backlog are also intimately related to population and birth rate, which are major hurdles in overcoming difficulties to access

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to surgical care for children[15, 33]. Of the 13 countries studied, Nigeria has the largest population in Africa and one of highest live birth rates amongst the studied countries[19], thus resulting in the largest surgical backlog and unmet prevalent need in our study for cryptorchidism and cleft-lip. Notwithstanding their high birth rates, LMICs have been shown to have an increased incidence of congenital anomalies[27, 33]. Up to 94% of congenital anomalies worldwide occur

ACCEPTED MANUSCRIPT in LMICs[8]. Explanation for these high rates are multifactorial, but include limited prenatal care and elevated rate of maternal pre-natal infections[8]. Unfortunately, there is little data on the exact incidence of index congenital surgical anomalies in LMICs[33, 41]. Efforts to establish such incidence data is currently underway through the work of many organizations aimed at

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improving surgical care for children worldwide, such as the Global Initiative for Children’s

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Surgery (GICS)[42].

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Evidently, accessibility and availability of material resources and infrastructure play a vital role in surgical delay, unmet surgical burden and surgical backlog[1, 15, 33]. Of all the

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countries studied, Egypt has the highest gross national income and, in our study, demonstrates

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some of the lowest surgical delays. Consequently, one can deduce that their infrastructure and access to material and human resources is better that of other African countries. Unsurprising,

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this same nation had the most scientific publications.

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This study has several limitations. In the first place, the data is limited to the 13 countries included. Since data is not available from other African LMICs, the median surgical backlog

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cannot be extrapolated to them. For many of the countries represented in our study, the mean

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surgical delay was calculated from values retrieved from only one publication, typically limited to one large hospital setting. Such results likely represent a single academic referral center in an

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urban milieu, treating urban children with relatively better and more timely access, often in-born in the institution itself. Such is the case for the data on anorectal malformations in Malawi and Nigeria. Despite known delays and backlogs in other areas of Nigeria, the anorectal malformation cases managed at the study center appeared to be all treated by the ideal age of surgery, thus resulting in a nil mean surgical delay and a nil extrapolated surgical backlog for the condition in those countries. Moreover, institutional studies such as ours show selection bias

ACCEPTED MANUSCRIPT against children from remote regions who have more limited access to care and therefore greater delays to surgery. Another limitation of our study lies in the estimation methodology for the surgical delay, backlog, and unmet surgical burden. These metrics hold true under the assumption that there was no or negligible mortality associated with the studied congenital

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anomalies – an assumption which is only partially correct, especially in the case of anorectal

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malformations. Moreover, the extrapolation of backlog from mean age delay at surgery assumes

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that the age of treatment at each center in a country is the same, and that patients are being selected for surgery independently of their age.

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5.0 Conclusion

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Though this study likely severely underestimates the true burden, backlog and surgical delay, it highlights the significant limitations in access to surgical care for children in several

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African LMICs using a robust scientific process. Results of this study support the need for

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scaling up pediatric surgical capacity in LMICs, in efforts to address the sizeable burden of

societies.

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Acknowledgements

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surgical disease in children and improve the care of the most vulnerable members of our

The authors wish to acknowledge Elena Guadagno from McGill University Health Center for her

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work on the search strategy and database extraction. Declaration of Conflicts of Interest The authors declared no potential conflicts of interest. Funding This study was financially supported by the Medical Class of ’65 Student Bursary from the McGill University Faculty of Medicine to Angela Lee.

ACCEPTED MANUSCRIPT Appendix A. Sample search strategy for Africa-Wide Information (EBSCO) Query

Results

S29

S27 AND S28

479

S28

TI(embryopath* or embryo-path* or congenital* or hereditar* or ((newborn* or new-born* or neonat* or neo-nat* or prematur* or pre-matur* or birth) N3 (abnormal* or anomal* or disease* or disorder* or complication* or cause* or defect* or malform* or mal-form* or irregular* or aberrati* or deviat* or deform* or syndrom* or dysplas* or inborn* or in-born*))) OR AB (embryopath* or embryo-path* or congenital* or hereditar* or ((newborn* or new-born* or neonat* or neo-nat* or prematur* or pre-matur* or birth) N3 (abnormal* or anomal* or disease* or disorder* or complication* or cause* or defect* or malform* or malform* or irregular* or aberrati* or deviat* or deform* or syndrom* or dysplas* or inborn* or in-born*))) OR KW (embryopath* or embryo-path* or congenital* or hereditar* or ((newborn* or new-born* or neonat* or neo-nat* or prematur* or prematur* or birth) N3 (abnormal* or anomal* or disease* or disorder* or complication* or cause* or defect* or malform* or mal-form* or irregular* or aberrati* or deviat* or deform* or syndrom* or dysplas* or inborn* or in-born*)))

11,043

S27

S25 NOT S26

5,586

S26

TI(animals or animal or mice or mus or mouse or murine or woodmouse or rats or rat or murinae or muridae or cottonrat or cottonrats or hamster or hamsters or cricetinae or rodentia or rodent or rodents or pigs or pig or porcine or swine or swines or piglets or piglet or boar or boars or "sus scrofa" or ferrets or ferret or polecat or polecats or "mustela putorius" or "guinea pigs" or "guinea pig" or cavia or callithrix or marmoset or marmosets or cebuella or hapale or octodon or chinchilla or chinchillas or gerbillinae or gerbil or gerbils or jird or jirds or merione or meriones or rabbits or rabbit or hares or hare or diptera or flies or fly or dipteral or drosphila or drosophilidae or cats or cat or carus or felis or nematoda or nematode or nematoda or nematode or nematodes or sipunculida or dogs or dog or canine or canines or canis or sheep or sheeps or lamb or lambs or mouflon or mouflons or ovis or goats or goat or capra or capras or rupicapra or chamois or haplorhini or monkey or monkeys or macaque or macaques or primate or primates or anthropoidea or anthropoids or saguinus or tamarin or tamarins or leontopithecus or hominidae or ape or apes or pan or paniscus or "pan paniscus" or bonobo or bonobos or troglodytes or "pan troglodytes" or gibbon or gibbons or siamang or siamangs or nomascus or symphalangus or chimpanzee or chimpanzees or prosimians or "bush baby" or prosimian or "bush babies" or galagos or galago or pongidae or gorilla or gorillas or pongo or pygmaeus or "pongo pygmaeus" or orangutans or pygmaeus or lemur or lemurs or lemuridae or horse or horses or pongo or equus or cow or cows or bull or chicken or chickens or gallus or quail or bird or birds or quails or poultry or poultries or fowl or fowls or reptile or reptilia or reptiles or snakes or snake or lizard or lizards or alligator or alligators or crocodile or crocodiles or turtle or turtles or amphibian or amphibians or amphibia or frog or frogs or bombina or salientia or toad or toads or "epidalea calamita" or salamander or salamanders or eel or eels or fish or fishes or pisces or catfish or catfishes or siluriformes or arius or heteropneustes or sheatfish or perch or perches or percidae or perca or trout or trouts or char or chars or salvelinus or "fathead minnow" or 173,397

AC

CE

PT

ED

M

AN

US

CR

IP

T

#

ACCEPTED MANUSCRIPT

US

CR

IP

T

minnow or cyprinidae or carps or carp or zebrafish or zebrafishes or goldfish or goldfishes or guppy or guppies or chub or chubs or tinca or barbels or barbus or pimephales or promelas or "poecilia reticulata" or mullet or mullets or seahorse or seahorses or "mugil curema" or "atlantic cod" or shark or sharks or catshark or anguilla or salmonid or salmonids or whitefish or whitefishes or salmon or salmons or sole or solea or "sea lamprey" or lamprey or lampreys or pumpkinseed or sunfish or sunfishes or tilapia or tilapias or turbot or turbots or flatfish or flatfishes or sciuridae or squirrel or squirrels or chipmunk or chipmunks or suslik or susliks or vole or voles or lemming or lemmings or muskrat or muskrats or lemmus or otter or otters or marten or martens or martes or weasel or badger or badgers or ermine or mink or minks or sable or sables or gulo or gulos or wolverine or wolverines or minks or mustela or llama or llamas or alpaca or alpacas or camelid or camelids or guanaco or guanacos or chiroptera or chiropteras or bat or bats or fox or foxes or iguana or iguanas or "xenopus laevis" or parakeet or parakeets or parrot or parrots or donkey or donkeys or mule or mules or zebra or zebras or shrew or shrews or bison or bisons or buffalo or buffaloes or deer or deers or bear or bears or panda or pandas or "wild hog" or "wild boar" or fitchew or fitch or beaver or beavers or jerboa or jerboas or capybara or capybaras or ovine or ewe* or chick* or slug or slugs or pigeon or pigeons or dalmation* or feline* or bovine) S20 AND S21 AND S24

S24

S22 OR S23

S23

SO (pediatr* or paediatr*)

S22

TI (newborn* or new-born* or neonat* or neo-nat* or infan* or child* or adolesc* or paediatr* or pediatr* or baby* or babies* or toddler* or kid or kids or boy* or girl* or juvenile* or teen* or youth* or pubescen* or preadolesc* or prepubesc* or preteen or tween) OR AB (newborn* or new-born* or neonat* or neo-nat* or infan* or child* or adolesc* or paediatr* or pediatr* or baby* or babies* or toddler* or kid or kids or boy* or girl* or juvenile* or teen* or youth* or pubescen* or preadolesc* or prepubesc* or preteen or tween) OR KW (newborn* or new-born* or neonat* or neo-nat* or infan* or child* or adolesc* or paediatr* or pediatr* or baby* or babies* or toddler* or kid or kids or boy* or girl* or juvenile* or teen* or youth* or pubescen* or preadolesc* or prepubesc* or preteen or tween)

267,464

S21

TI(surger* or surgic* or procedure* or operati*) OR AB(surger* or surgic* or procedure* or operati*) OR KW(surger* or surgic* or procedure* or operati*)

155,827

S20

S1 or S2 or S3 or S4 or S5 or S6 or S7 or S8 or S9 or S10 or S11 or S12 or S13 or S14 or S15 OR S16 OR S17 OR S18 OR S19

1,191,850

S19

TI (Africa AND (LMIC or LMICs or LAMIC or LAMICs or ((deprived* or underserved or transitional or poor or underdevel* or devel* or low* or less or least or under or mid* or third) N3 (countr* or nation or econom*)))) OR AB (Africa AND (LMIC or LMICs or LAMIC or LAMICs or ((deprived* or underserved or transitional or poor or underdevel* or devel* or low* or less or least or under or mid* or third) N3 (countr* or nation or econom*)))) OR KW (Africa AND (LMIC or LMICs or LAMIC or LAMICs or ((deprived* or underserved or transitional or poor or underdevel* or devel* or low* or less or least or under or mid* or third) N3 (countr* or nation or econom*)))) 24,632

5,627 271,832 22,733

AC

CE

PT

ED

M

AN

S25

ACCEPTED MANUSCRIPT

S17

TX (Sao Tome)

S16

TX (madagascar or malagasy)

S15

TX (cameroun or cameroon)

S14

TX (comoros or comores or comoro or mayotte)

S13

TX zambia

S12

TX (zimbabwe or rhodesia)

S11

TX swaziland

S10

TX (mozambique or Mocambique or mozambic)

31,024

S9

TX (morocco or ifni)

33,623

S8

TX (malawi or nyasaland)

S7

TX (lesotho or Basutoland)

S6

TX (egypt or "united arab republic")

S5

TX (katanga or zaire or congo or leopoldville)

52,505

S4

TX (chad or tchad or tshad)

18,196

S3

TX ("ubangi-shari" or Centrafrique or ((central-africa* or centrafrican or “central African”) N2 (republic or empire)))

S2

TX (West*-Africa or Benin or Dahomey or Burkina Faso or Upper Volta or Cape verde or Cabo Verde or cap-vert or cote d'ivoire or ivory coast or Cote diIvoire or Gambia or Ghana or Gold Coast or Guinea or Liberia or Mali or Mauritania or Mauretania or Niger or Nigeria or Senegal or Senegambia or Sierra Leone or Togo or Togolese or Togoland or (sudan* N1 republic))

S1

TX (East* Africa or Burundi or urundi or Djibouti or Somaliland or Eritrea or Ethiopia or Abyssinia or Kenya or Rwanda or Ruanda or Somalia or Somaliland or Sudan or Tanzania or Tanganyika or Zanzibar or Urundi or Uganda or (Somali* N1 (democratic or republic))) 309,781

3,317 28,971 30,469 3,343 31,581 110,796 11,800

23,984 15,178 131,914

7,419

AC

CE

PT

ED

M

AN

US

CR

IP

T

S18

TX (Porto-Novo or Cotonou or Kutonu or Ouagadougou or Ouaga or Bujumbura or Usumbura or Bangui or Bangi or N'Djamena or Ndjamena or Kinshasa or Asmara or Asmera or Addis Ababa or Addis Abeba or Banjul or Conakry or Bissau or Lilongwe or Bamako or Maputo or Niamey or Kigali or Freetown or Free-town or Mogadishu or Muqdisho or Maqadishu or Juba or Dodoma or Dar es Salaam or Lome or Kampala or Harare or Praia or Yaounde or Jaunde or Brazzaville or Yamoussoukro or Cairo or Accra or Nairobi or Maseru or Nouakchott or Rabat or Abuja or Moresby or Dakar or Khartoum or Mbabane or Embabane or Lusaka or Moroni or Antananarivo or Tananarive or Tana) 385,762

415,852

ACCEPTED MANUSCRIPT

Life expectancy (years) 71

32

64

Ghana

27.41

33

61

Nigeria

182.20

40

53

Kenya

46.05

35

Togo and Benin

18.18

36

Uganda

39.03

43

58

Zambia

16.21

40

60

Zimbabwe

15.60

35

57

Ivory Coast

22.70

37

52

Madagascar

24.24

34

65

Malawi

17.22

39

63

AN

M ED PT CE AC

IP

T

99.39

US

Ethiopia

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Appendix B. Population statistics used in calculation [19] Population Live birth rate Country (million) (per 1,000 people) Egypt 91.51 28

62 60

ACCEPTED MANUSCRIPT

AC

CE

PT

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Appendix C. Ideal age of surgery and disability weights used in calculations for different congenital anomalies Ideal age at surgery Disability Weights Disease incidence Condition [27] (per 10,000 live births)[20-25] [26] 1.5 Cryptorchidism 16 months 0.22 1.38 Isolated cleft lip 4 months 0.18 30 Hypospadias 1 year 0.12 0.33 Bladder exstrophy 3 days 0.92 2 Anorectal malformation 24. 5 days 0.28

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Appendix D. Distribution of associated countries and publications by congenital anomaly Title

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Author, Year CRYPTORCHIDISM

Hay et al, 2007[44]

Khairi et al, 2009[45]

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EGYPT

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Shafik et al, 2008[46]

Shehata et al, 2016[47]

CE

Zakaria et al, 2013[48]

Atawurah et al, 2011[49]

AC

GHANA

Adesanya et al, 2013[50]

NIGERIA

Intra-abdominal testis: Histological alterations and significance of biopsy Collateral circulation after spermatic vessel ligation for abdominal testis and its impact on staged laparoscopically assisted orchiopexy Hypoplastic gonadal vessels exiting the deep ring during laparoscopy for impalpable testes: When is inguinal exploration necessary? Inguinal canal dilatation: A novel technique for the repair of failed testicular descent despite hormonal treatment Staged laparoscopic traction-orchiopexy for intraabdominal testis (Shehata technique): Stretching the limits for preservation of testicular vasculature Examination under anesthesia for management of impalpable undescended testis: a traditional technique revisited Role of laparoscopy in diagnosis and management of nonpalpable testes Diagnostic value of high resolution ultrasound in localisation of the undescended testis in children. Management of undescended testes in children in Zaria, Nigeria The utility of ultrasonography in the management of undescended testis in a developing country

M AN

Abouzeid et al, 2011[43]

Ameh et al, 2000[51] Ekenze et al, 2013[52]

Number of patients

Age (years)

Age range (years)

57

4.70

0.58 – 18

90

2.50

0.75 – 4

27

4.30

0.83 – 12

26

3.60

2.20 – 6

23

2.32

1–4

545

1

0.50 – 3.67

64

4.60

1 – 15

40

4

1 – 11

36

6

1.17 – 12

49

5

1 – 14



CLEFT LIP Wu et al, 2013[34]

Burden of surgically correctable disabilities among children in the Dadaab Refugee Camp

40

6.20

NIGERIA

Adeyemo et al, 2011[53]

Blood transfusion requirements in cleft lip surgery

100

4.38

TOGO AND

De Buys Roessingh et al,

Success and failure for children born with facial clefts in

54

2.15

KENYA

0.25 – 32.50 –

Nath et al, 1996[56]

ZIMBABWE

Pham et al, 2007[57]

HYPOSPADIAS IVORY COAST

Bankole et al, 2007[58]

The proximal hypospadias treatment at the teaching hospital of Treichville (Abidjan) Modified Byars' flaps for securing skin closure in proximal and mid-penile hypospadias Comparative study between modified Koyanagi and Snodgrass techniques in management of proximal types of hypospadias Comparison between vertical preputial island onlay flap and Tubularized Incised Plate (TIP) in repair of proximal penile hypospadias Combined use of Mathieu and incised plate technique (Snodgrass technique) for repair of distal hypospadias in older children. Outcomes of hypospadias repair in older children: A prospective study Tubularised, incised plate urethroplasty for distal hypospadias Burden of surgically correctable disabilities among children in the Dadaab Refugee Camp Choosing a technique for severe hypospadias Outcomes of transurethral and suprapubic urinary diversion following hypospadias repair in children. Experience with transverse preputial island flap for repair of hypospadias in Ile-Ife, Nigeria

ED

Abouzeid et al, 2011[59]

CR IP T

ZAMBIA

Africa: a 15-year follow-up. Malnutrition in cleft lip and palate children in Uganda Paediatric plastic surgery in the University Teaching Hospital, Lusaka, Zambia: a 13-year audit Cleft deformities in Zimbabwe, Africa: socioeconomic factors, epidemiology, and surgical reconstruction

US

2012[54] Cubitt et al, 2012[55]

M AN

BENIN UGANDA

Noweir et al, 2009[61]

CE

EGYPT

PT

Elkassaby et al, 2013[60]

Salem et al, 2013[62]

AC

Ziada et al, 2011[37] Barrack et al, 2001[63]

KENYA MADAGASCAR

Wu et al, 2013[34] Arnaud et al, 2011[64]

Osifo et al, 2010[65] NIGERIA Sowande et al, 2009[66] BLADDER EXSTROPHY EGYPT Fahmy et al, 2007[67]

Ureterorectostomy as a continent urinary diversion for

131

0.35

0–1

255

0.50

0–1

21

1.86

0.42 – 18

35

3.33

0.75 – 15

47

1.58

0.50 – 4

50

2.67

0.83 – 8

82

1.75

1 – 4.17

33

6.50

6–9

61

3.49

0.50 – 12

20

3.25

1.5 – 7

26

5.80



28

4.51

1.83 – 16.5

196

2.60

0.50 – 12

51

1.80

0 – 15

11

5.50

4–7

EGYPT

El-Deibeiky et al, 2009[70] Eltayeb et al , 2010[71]

MALAWI

Wu et al, 2013[72]

Beudeker et al, 2013[73]

PT

Chirdan et al, 2008[74]

CE

Ekenze et al, 2007[75]

Lukong et al, 2011[76] Osifo et al, 2014[77]

AC

NIGERIA

CR IP T

Long-term functional evaluation of fecal continence after laparoscopic-assisted pull-through for high anorectal malformations Delayed presentation of anorectal malformations: the possible associated morbidity and mortality Burden of surgically correctable disabilities among children in the Dadaab Refugee Camp The hidden mortality of imperforate anus Colostomy for high anorectal malformation: an evaluation of morbidity and mortality in a developing country Colostomy for large bowel anomalies in children: a case controlled study Management of anorectal malformation: Changing trend over two decades in Zaria, Nigeria Outcome of primary posterior sagittal anorectoplasty of high anorectal malformation in well selected neonates

ED

KENYA

US

NIGERIA Shittu et al, 2005[69] ANORECTAL MALFORMATION

M AN

Shoukry et al, 2009[68]

complicated bladder exstrophy in children by using a modified Duhamel procedure: A case series Outcome of complete primary bladder exstrophy repair: Single-center experience Management of ectopia vesica in Ibadan: an 8-year review

51

0.02

0 – 1.17

13

0.02

0 – 1.08

15

0.50

0.25 – 0.75

20

0.29

0.01 – 14

17

1.60



46

0.07

0 – 3.25

61

0.02

0 – 0.08

76

0.04

0.01 – 0.02

295

0.02

0 – 0.03

50

0.01

0 – 0.02

ACCEPTED MANUSCRIPT References

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47. Shehata S, Shalaby R, Ismail M, Abouheba M, Elrouby A. Staged laparoscopic tractionorchiopexy for intraabdominal testis (Shehata technique): Stretching the limits for preservation of testicular vasculature. J Pediatr Surg. 2016; 51:211-5 48. Zakaria OM, Hokkam E, El Kadi KE, Al Buali WH, Zakaria HM, Daoud MY, et al. Examination under anesthesia for management of impalpable undescended testis: a traditional technique revisited. World J Surg. 2013; 37:1125-9 49. Atawurah H. Role of laparoscopy in diagnosis and management of nonpalpable testes. World J Lap Surg. 2011; 4:73 50. Adesanya OA, Ademuyiwa AO, Bode CO, Adeyomoye AA. Diagnostic value of high resolution ultrasound in localisation of the undescended testis in children. Afr J Paediatr Surg. 2013; 10:127-30 51. Ameh EA, Mbibu HN. Management of undescended testes in children in Zaria, Nigeria. East Afr Med J. 2000; 77:485-7 52. Ekenze SO, Nwankwo EP, Okere PC. The utility of ultrasonography in the management of undescended testis in a developing country. World J Surg. 2013; 37:1121-4 53. Adeyemo WL, Adeyemo TA, Ogunlewe MO, Desalu I, Ladeinde AL, Mofikoya BO, et al. Blood transfusion requirements in cleft lip surgery. Int J Pediatr Otorhinolaryngol. 2011; 75:691-4 de Buys Roessingh AS. Success and failure for children born with facial clefts in Africa: a 54. 15-year follow-up. World journal of surgery. 2012; 36:1963-9 55. Cubitt J, Hodges A, Galiwango G, Van Lierde K. Malnutrition in cleft lip and palate children in Uganda. . European Journal of Plastic Surgery. 2012; 35:273-6 56. Nath S, Jovic G. Paediatric plastic surgery in the University Teaching Hospital, Lusaka, Zambia: a 13-year audit. Br J Plast Surg. 1996; 49:290-8 57. Pham AM, Tollefson TT. Cleft deformities in Zimbabwe, Africa: socioeconomic factors, epidemiology, and surgical reconstruction. Arch Facial Plast Surg. 2007; 9:385-91 58. Bankole SR, Rose N, Blaise Y, Faustin T, Lambert V, Leonard M. The proximal hypospadias treatment at the teaching hospital of Treichville (Abidjan). Progres en urologie: journal de l'Association francaise d'urologie et de la Societe francaise d'urologie. 2007; 17:860-2 59. Abouzeid AA. Modified Byars' flaps for securing skin closure in proximal and mid-penile hypospadias. Ther Adv Urol. 2011; 3:251-6 60. Elkassaby M, Shahin M, El-Sayaad I, Arnos A. Comparative study between modified Koyanagi and Snodgrass techniques in management of proximal types of hypospadias. Journal of Taibah University Medical Sciences. 2013; 8:97-104 61. Noweir A, Eltahawy E, Kotb Y, Esmat M, Yassin M. Comparison between Vertical Preputial Island Onlay Flap and Tubularized Incised Plate (TIP) in Repair of Proximal Penile Hypospadias. Urology. 2009; 74:S97 62. Salem HK, Shelbaia A, Elnashar A. Combined use of Mathieu and incised plate technique (Snodgrass technique) for repair of distal hypospadias in older children. African Journal of Urology. 2013; 19:74-7 63. Barrack SM, Hamdun SH. Tubularised, incised plate urethroplasty for distal hypospadias. East Afr Med J. 2001; 78:327-9 64. Arnaud A, Harper L, Aulagne MB, Michel JL, Maurel A, Dobremez E, et al. Choosing a technique for severe hypospadias. Afr J Paediatr Surg. 2011; 8:286-90 65. Osifo OD, Azeez AL. Outcome of transurethral and suprapubic urinary diversion following hypospadias repair in children. Pak J Med Sci. 2010; 26:329-34 66. Sowande AO, Olajide AO, Salako AA, Olajide FO, Adejuyigbe O, Talabi AO. Experience with transverse preputial island flap for repair of hypospadias in Ile-Ife, Nigeria. Afr J Paediatr Surg. 2009; 6:40-3 67. Fahmy MA, Mansour AZ, Mazy A. Ureterorectostomy as a continent urinary diversion for complicated bladder exstrophy in children by using a modified Duhamel procedure: a case series. Int J Surg. 2007; 5:394-8

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68. Shoukry AI, Ziada AM, Morsi HA, Habib EI, Aref A, Badawy HA, et al. Outcome of complete primary bladder exstrophy repair: single-center experience. J Pediatr Urol. 2009; 5:496-9 69. Shittu OB. Management of ectopia vesica in Ibadan: an 8-year review. West Afr J Med. 2005; 24:196-9 70. El-Debeiky MS, Safan HA, Shafei IA, Kader HA, Hay SA. Long-term functional evaluation of fecal continence after laparoscopic-assisted pull-through for high anorectal malformations. Journal of Laparoendoscopic & Advanced Surgical Techniques 2009; 19:s51-s4 71. Eltayeb AA. Delayed presentation of anorectal malformations: the possible associated morbidity and mortality. Pediatr Surg Int. 2010; 26:801-6 72. Wu VK, Poenaru D. Burden of surgically correctable disabilities among children in the Dadaab Refugee Camp. World journal of surgery. 2013; 37:1536-43 73. Beudeker N, Broadis E, Borgstein E, Heij HA. The hidden mortality of imperforate anus. Afr J Paediatr Surg. 2013; 10:302-6 74. Chirdan LB, Uba FA, Ameh EA, Mshelbwala PM. Colostomy for high anorectal malformation: an evaluation of morbidity and mortality in a developing country. Pediatr Surg Int. 2008; 24:407-10 75. Ekenze SO, Agugua-Obianyo NE, Amah CC. Colostomy for large bowel anomalies in children: a case controlled study. Int J Surg. 2007; 5:273-7 76. Lukong CS, Ameh EA, Mshelbwala PM, Jabo BA, Gomna A, Akiniyi OT, et al. Management of anorectal malformation: Changing trend over two decades in Zaria, Nigeria. Afr J Paediatr Surg. 2011; 8:19-22 77. Osifo OD, Osagie TO, Udefiagbon EO. Outcome of primary posterior sagittal anorectoplasty of high anorectal malformation in well selected neonates. Niger J Clin Pract. 2014; 17:1-5

ACCEPTED MANUSCRIPT Table 1: Retrospective review population data Diagnoses

Age [years; median (range)] 2 (0.08-15) 0.67 (0.25-7) 4 (0.67-14) 3 (0.01-18) 0.96 (0.01-18)

Number of cases 33 25 45 17 90

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Cryptorchidism Cleft lip Hypospadias Bladder exstrophy Anorectal malformation

ACCEPTED MANUSCRIPT Table 2: Estimated mean national surgical delay, and extrapolated national surgical backlog and unmet prevalent by country and condition.

PT

CE

AC

12,205 76,250 23,062 209,260

2,685 16,775 5,074 46,037

T

Unmet Prevalent Need (DALYs)

M

AN

US

CR

417 1,323 4,154 167 23 94 121

ED

CRYPTORCHIDISM Egypt 0.62 Ethiopia 3.15 Ghana 3.35 Nigeria 3.72 CLEFT LIP Ethiopia 0.95 Kenya 5.95 Nigeria 4.13 Togo and Benin 1.85 Uganda 0.10 Zambia 1.05 Zimbabwe 1.61 HYPOSPADIAS Cote d'Ivoire 2.08 Egypt 1.85 Ethiopia 4.17 Kenya 3.69 Madagascar 3.51 Nigeria 1.39 BLADDER EXSTROPHY Egypt 0.99 Ethiopia 5.48 Nigeria 0.11 ANORECTAL MALFORMATION Egypt 0.31 Ethiopia 2.12 Kenya 1.53 Malawi 0 Nigeria 0

Surgical Backlog (# of cases)

IP

Mean Surgical Delay (years)

75 238 748 30 4 17 22

2,659 7,284 20,188 9,009 4,402 15,638

319 874 2,423 1,081 528 1,877

84 575 26

77 529 24

159 1,349 493 0 0

44 378 136 0 0

ACCEPTED MANUSCRIPT

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Table 3. Summary of the total number of surgical backlog cases per condition. Total surgical backlog Condition Number of countries (# of cases) Cryptorchidism 320, 777 4 Cleft lip 6, 299 8 Hypospadias 59, 180 6 Bladder exstrophy 685 3 Anorectal malformation 2, 001 5

Figure 1

Figure 2

Figure 3

Figure 4