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Fig. 6.2 Population
data collection process
[15]
Table 6.4 Sampling strategies
Probability sampling Non-probability sampling
Simple/random Convenience
Systematic Quota
Stratied Judgment
Clustered Snowball
Identify and define the target population
Select the sampling frame
Choose the sampling method
Determine the sampling size
Collect the required data
tings where staff and nances are already limited.
However, it is important to acknowledge the
biases and pitfalls that come with non-probability
sampling. Though it may lead to larger sample
size and greater validity, it may also introduce
substantial selection bias that compromises internal validity. Efforts can be made to minimize this
bias by controlling for as many variables as possible, but consequently, the ability to randomize
will be limited.
Probability sampling can provide the best randomized and valid data, but it has potential negative effects which include an increased use of
resources and longer time while it may lead to a
smaller sample size. Ideally, a study which uses
probability sampling should obtain a large, random, and representative sample. Selection bias
also may occur with probability sampling if subjects that choose to participate differ from those
who do not, even if there is random sampling.
Probability sampling may be best to gauge the
general understanding of the problems or to be
able to further extrapolate the data, while nonprobability sampling may permit the researchers
to reach more specic conclusions and deeper
understandings.
Barriers inPopulation-Based Research
There are many barriers to collecting valid information through population-based research. Time
constraints and limited budgets may result in a
less thorough sampling strategy. In addition, there
are other barriers which may include all the 5As
as mentioned above: geographical access to
remote or displaced populations, road and weather
conditions, cultural barriers or taboos on topics of
interest, language barriers, or distrust in enumerators or of people outside of a specic group.
Many barriers can be overcome with thoughtful planning and collaboration with all the stakeholders in the project. Combining the quantitative
method development with ongoing qualitative
evaluations (expert opinions, focus group discussions, and cognitive interviewing) can also help
to overcome the barriers, as can thorough testing
of the tools prior to addressing the fully determined sample.
Pre-testing of the survey tool consists of asking
the questions or measuring the planned observations on subjects who may not necessarily be part
of the target study population. For example, one
may try an in-preparation survey on college students rather than on the elderly who are the target
study population. This assumes that if college students cannot reply to the questions, it is not likely
that the elders will be able to answer them.
After pre-testing and adjusting the tool, a
pilot-test needs to be done within the community
of interest. This is highly recommended and considered mandatory by the professionals. As indi-
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cated in the bible of survey methods: “if you
don’t have the resources to pilot-test your questionnaire or study, don’t do the study” [15].
Level 1: Population-Based Survey
Tools
World Health Organization guidelines for conducting community surveys on injuries and violence outlined important considerations for
household surveys to gain data on injuries for
2004 [16]. These focus on achieving better estimates of injury burden by looking directly at the
population where injuries occur which may not
result in hospitalization or a recorded death. In
the initial planning of a study local leadership
should be involved from the start and an ideal
timeline and target population must be identied.
The guidelines should include a checklist for the
planning of the household surveys. The WHO
Guidelines further explain the important aspects
of how to design the questionnaire, how to conduct the survey, and how to analyze the data. The
importance of quality assurance in eldwork
where the data is collected is emphasized. At this
stage, the surveyors must be trained, and each
area should have designated supervisors to manage any difculties that inevitably arise. The
guidelines also describe ethical concerns when
household surveys are conducted.
These are guidelines rather than dened rules
and should be adapted to the surgical questions
that the survey tries to answer. They provide a
strong framework for a particular topic which
requires a measured investment.
Surgeons OverSeas Assessment of Surgical
Needs (SOSAS) survey tool developed by their
research team [5] was conceived to measure the
prevalence of surgical conditions among the population in lower and middle-income settings. The
tool initially combined elements from the World
Health Organization guidelines for conducting
community surveys on injuries and violence with
demographic health surveys. It also used elements from other surveys on road trafc incidents, and from questionnaires on maternal,
congenital, neoplastic, and infectious surgically
treatable disease states. The tool was validated by
cognitive interviews of recent African immigrants in the United States and of individuals in
Sierra Leone and in the Netherlands. Categories
of the survey included demographic data, access,
cost, family history, barriers, facilitators, and past
medical history of the household.
The initial pilot study was conducted in Sierra
Leone by training local medical students to use
iPads and go to 5 clusters of 10 households and to
interview 100 people using this tool. The high
response rate and ease with which the survey was
conducted via iPad demonstrated its high usefulness. Part of the success of this initial assessment
was due to the use of local students to conduct the
door-to-door surveys and gather direct
population- level data. Later larger scale uses of
the tool were applied in Sierra Leone and then in
Nepal, Nigeria, Malawi, Mexico, and several
other nations to conduct various studies other
than surgical [7]. Further validation has been the
nding in Nepal that 94.6% of self-reported conditions were conrmed by physical examination.
The tool has been successful in characterizing the
unmet surgical needs in many different settings
and has helped researchers and surgeons to
understand the specics of the barriers and to
overcome them.
Local translators and staff are needed to ensure
that there is sensitivity to the local culture when
conducting qualitative research, such as focus
group discussions or semi-structured interviews.
Depending on the context, members from different tribes may not be comfortable speaking candidly with members of other tribes. Similarly,
tribal leaders may be disturbed if they feel their
voice is not represented. Therefore, it can be
helpful to separate groups to obtain the most candid responses. For example, interviewing a
women-only group led by a female facilitator
may be necessary to properly characterize
OBGYN needs among the local women. When
interviews are done at the population level,
Village Health Committees can be included along
with the use of a tool like the SOSAS to gain a
granular understanding of population barriers
which will unveil novel perceptions of how care
is received by the local population.
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Extrapolation is done by analysis of a proportion of a small subset of population and expanding it to the larger population of interest. This can
be done for a country or an area to estimate the
surgical needs globally and to calculate surgical
deaths that could have been prevented. It is possible to extrapolate from one population base to
another population base. Many times, the data
from countries with robust data on surgical procedures could be applied with appropriate modications to populations who have limited data
collection opportunity or expertise. This serves to
obtain a global estimation of surgical needs, as
described in the introduction of this chapter. This
can also be used in reverse, as done in a study
which estimated the surgical needs of displaced
persons by using the 21 Global Burden of Disease
data [17].
Extrapolated studies do not allow for the
unique characteristics of subjects in specic clusters. A global approach to a surgical problem also
may not allow for a granular local understanding
of the issues, nor will it lead to workable solutions. A local approach is necessary to a better
understanding of the community and in turn to
assist in improvement of a surgical program.
Level 2: Hospital Level
At the hospital level, several tools have been
developed and tested [18]. One of the basic
tools is the WHO Guidelines for Essential
Trauma Care that was developed in 2004 to outline the 11 essential trauma care services that
should be available to every injured person
worldwide [19]. These guidelines have been
used extensively in several LMICs and serve as
a useful basic tool for evaluating initial capacity [20]. To further examine trauma surgical
care and expand on the WHO Guidelines tool,
the Emergency and Critical Care tool (EaCC)
was developed and piloted in Tanzania and
Sierra Leone [21]. The EaCC tool examined 8
categories that were necessary for emergency
and critical care services: infrastructure, human
resources, training, drugs, equipment, routines,
guidelines, and support services. WHO’s
Global Initiative for Emergency and Essential
Trauma Care developed the tool in 2007 for
Situational Analysis to Assess Emergency and
Essential Surgical Care (TSAAEESC) [22].
This tool looked at four categories: infrastructure, human resources, interventions, and emergency equipment and supplies and has been
piloted in many LMICs. This assessment tool
focused on hospital capacity assessments needs
improvement and needs to be more streamlined
to be manageable.
Surgeons OverSeas (SOS) modied the
TSAAEESC tool to create the Personnel,
Infrastructure, Procedures, Equipment, and
Supplies (PIPES) tool. This tool reduced the
number of categories in the survey and simplied
the responses [12]. It was piloted in Sierra Leone
and since then has been used in many different
contexts, including local, whole country, and
multi-country assessments. PIPES allows for a
delineation of needs based on location, time, and
scope allowing for a granular assessment. The
PIPES tool has been further modied into a pediatric version, PediPIPES [23].
The Harvard Humanitarian Initiative developed a surgical capacity tool by modifying the
TSAAEESC.This tool examines eight aspects of
surgical care: access and availability, access to
human resources, infrastructure, operating room
information, procedures (removed in modication), outcomes, equipment, nongovernmental
organization (NGO) involvement, and pharmaceuticals [24]. This tool has been used in a wide
variety of contexts as well.
There have been other capacity tools to more
specically examine trauma surgical care. The
Global Trauma System Evaluation Tool
(GT-SET) was piloted in South Sudan to help
establish a military trauma system [25]. GT-SET
looks at System Leadership, Access to Care,
Initial Resuscitative Care, Acute Injury Care,
Rehabilitation, Prevention, and Education/
Research/Quality Improvement (ERQI). It goes
beyond the hospital level to look at referrals and
community-level health care. The International
Assessment of Capacity for Trauma (INTACT)
tool also examines a system for trauma surgical
care and focuses on the surgical capacity of
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healthcare facilities. It was piloted in Sierra
Leone and was compared to the PIPES assessment tool [26]. It was designed to be a simple
tool applicable to many settings and useful for
assessing trauma surgical capacity from the rst
patient contact until their discharge.
The hospital-level surgical capacity is one of
the rate-limiting steps for surgery and is a necessary target for surgical assessment. Further
assessment, reassessment, and progress reports
within a system allow for a longitudinal development of clear goals for a surgical system. While
the tools referenced above represent some of the
most cited hospital surgical capacity tools, they
do not include all. There remains a need for more
specialty tools as health systems grow in complexity and volume.
Level 3: Availability andQuality
ofSurgical Procedures
The availability and quality of surgical procedures may appear difcult to evaluate in a systematic way. Many causes can contribute to the
outcomes of surgeries, including patients’ baseline health, surgical equipment availability, and
surgeons training. Specically for countries
where there are no surgical programs, surgeons
may have been trained with equipment that is not
available to them in their home country [27, 28].
To develop strong surgical programs, improvement of this aspect of surgical assessment is necessary. If a department is large enough for a
peer-reviewed quality assurance program this
would be preferred. Through such a program,
surgical outcomes can be reviewed in a nonpunitive way and improvements suggested based
on pre-operative management of the patients,
renewal of equipment, or surgical continuing
medical education. If a department is not large
enough to form a robust quality improvement
group one must nd other options. One method is
to qualitatively observe surgical procedures and
to qualitatively interview patients as to their satisfaction. This can provide valuable insight into
the day-to-day operation of the program and
detect deciencies. A qualitative approach may
provide objective insights not previously anticipated or included in a survey. One example of
this is an ethnographic case study in Norway at
different centers where researchers qualitatively
observed surgical procedures followed by indepth interviews. This was used along with the
WHO surgical safety checklist [29]. This study
demonstrated the redundancy of certain aspects
of the WHO surgical safety checklist and its usefulness. By transferring this framework to
LMICs, researchers can gain a greater understanding of the deciencies. The advantages of
WHO safety checklist will complement its use in
the conduct of assessment studies [30]. By qualitative interviews of the local surgical teams, this
could also be used to minimize performance bias
in data collection and to standardize surgical
care.
On a quantitative level, researchers can measure veried outcomes that reect the capability
of surgical teams. This comes with advantages
and disadvantages as surgical procedures are all
different and vary by patient risk factors.
Measures such as rate of surgical site infection or
90-day mortality may be useful, but it is important to note that these measures can reect
broader issues such as medication adherence,
hospital cleanliness, and patient risk factors.
These measures can be non-specic or may
reect problems elsewhere, as in the pharmacy or
on the hospital wards, rather than being surgical
issues. It is paramount to obtain the greatest
internal validity possible when measuring these
parameters. The various non-specic data combined with more specic tools can lead to better
understanding and improvement in surgical outcomes and safety.
The success of any program is ultimately
limited by the capability and education of the
involved staff. A survey of surgeons from 22 different countries identied which procedures
require greatest surgical prociency in conditions of a disaster [31]. This shows that to have
effective implementation, there need to be effective training programs for the local surgeons.
This may focus on systematic training of one
procedure such as an inguinal hernia repair. This
was done in 16 countries over two years [32]. It
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started with an initial training assessment and
with interval prociency assessments prior to
individual surgeons being paired with regional
trainers. Technical prociency was then rated on
a scale of effectiveness. A video assessment
6months later was evaluated for technical prociency. Local trainees were given incentives to
document surgical outcomes independently.
This provides a strong framework for the successful training of surgeons and monitoring of
outcomes.
Innovative measures need to be developed
to train an adequate surgical workforce. The
training of non-physician clinicians (NPCs) to
provide perioperative and intraoperative services may offer an opportunity to ll this gap.
This has been shown to result in quality care
and improved access in sub-Saharan Africa,
where this model is widely implemented [33].
Almost half of sub- Saharan African countries
use NPCs to perform minor surgical procedures including the majority of Caesarean sections. This model can also be used to fulll
anesthetic and nursing needs. This approach
with appropriate evaluation of outcomes permits better and more rapid growth and development of high-quality surgical care which
may lead to greater access.
Level 4: Ministry ofHealth (MOH)
At the level of the MOH, it is important to note
that there are various disparities in attitudes,
including political, to organization of surgical
care within a country. To do this effectively,
assessments must be done at many different
healthcare centers in different areas, rural and
urban, to provide a more granular view of care.
To most accurately extrapolate needs and capacity in a country one must examine hospitals at the
rural community level, the district level, and the
referral center level in different large areas,
depending on the size of the country. Because of
natural time and resource constraints, it is often
impossible to evaluate every healthcare center.
Using extrapolation can help the MOH make
informed decisions about resource allocation and
management as long as racial, economic, and
political bias can be avoided.
Level 5: Global Estimations
There have been attempts to broadly estimate
surgical need globally. One study in 2010 estimated minimum surgical rate per 100,000 by
extrapolating surgical rates of countries with high
life expectancies [34]. An estimated 310 million
surgical procedures are currently performed
globally each year with most being done in North
America and in Western Europe. The study concluded that a proposed minimum rate of surgery
varies from about 3500 to 6000 per 100,000 people and that the unmet surgical need varies dramatically by region. Direct evaluation by
household sampling with physical exams in
Rwanda recently found a prevalence of surgical
need closer to 12,000 per 100,000, almost twice
the 6145 per 100,000 estimated by modeling for
East Africa [35]. To achieve more accurate broad
estimates to unravel surgical need globally, more
accurate local data collection and reporting are
needed.
Surgical need can further be assessed from the
perspective of DALYs. This has been used to
assess the lives saved, however with disabilities
rather than only patient survival. This metric
measures years lost due to death by a disease or
accident, and years lived limited by disability.
Using DALYs allows comparison of treatments
that result in death to treatments that result in disability. Looking specically at surgery, Disease
Control Priorities for Developing Countries can
estimate the DALYs lost due to surgical conditions, such as injury, malignancy, congenital disorders, etc. [36] They estimate that surgically
treatable conditions conservatively account for
11.2% of total DALYs lost globally primarily to
injuries, congenital malformations, malignancies, obstetric complications, and other surgical
conditions. While much of the research has
shifted to local needs assessments, these estimations can provide a useful framework for understanding the gaps that continue to exist in surgical
access.
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Conclusions
Surgical needs assessments can be explored by a
variety of approaches and methods. The greater
the effort that is invested at the start into the
design of a study, the better the data generated by
the tools used. It is then more likely such studies
will reect the real issues faced by a population
or by a situation and thus suggest most promising
solutions. Various tools summarized above can
provide powerful data which will lead to greater
insights and then to improvement in accessibility
and in quality of surgical care. Although there
remain many challenges, it is expected that the
readers, by following principles outlined in this
chapter, can effectively assess surgical care and
contribute to the improvements in surgical care
world wide.
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How toBuild Pediatric
https://t.me/medicina_free
Neurosurgical Capacity Practice
inLow- andMiddle-Income
Countries andHow toFocus
onTreatment ofaNeurosurgical
Disease
MarinusKoning, JanKoning, andPatriciaO’Neill
Nothing great or new can be done without enthusiasm.
– Harvey Cushing
7
Abbreviations
ANC antenatal care
ATL Advance Trauma Life Support
CIC Clean Intermittent Catheterization
DALYs disability-adjusted life years
ETV endoscopic third ventriculostomy
FA Folic Acid
FIENS Foundation for International
Education in Neurological Surgery
GAPSBiF Global Alliance for Prevention of
Spina Bida-F (F=folate)
HEW Health Extension Workers
IFGlobal International Federation for Spina
Bida and Hydrocephalus
LMICs low- and middle-income countries
Marinus Koning was deceased
M. Koning · P. O’Neill (*)
ReachAnother Foundation, Bend, OR, USA
e-mail: mkoning@reachanother.org;
poneill@reachanother.org
J. Koning
ReachAnother Foundation, Workum, The Netherlands
e-mail: jkoning@reachanother.nl
MCM Myungsung Christian Medical Center
NS Neurosurgery
NTDs neural tube defects
RAF ReachAnother Foundation
SB spina bida
SBH spina bida and hydrocephalus
VPS ventriculoperitoneal shunt
Background
Spina bida is a congenital anomaly that is
oftenused as anon-specic term to refer to neural tube defects which are the most common and
severe birth defects to affect the human nervous
system. As such, they are a signicant cause of
childhood mortality and disability-adjusted life
years (DALYs) globally. Worldwide, it is estimated that there are approximately 300,000
babies born each year with spina bida (SB) and
related defects, resulting in approximately
100,000 deaths and 8.6 million DALYs. Spina
bida and hydrocephalus (SBH), largely caused
by folic acid famine, is a major public health bur-
den, disproportionally impacting low- and
middle- income countries (LMICs). Mortality of
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023
M. A. Hardy, B. R. Hochman (eds.), Global Surgery, https://doi.org/10.1007/978-3-031-28127-3_7
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M. Koning et al.
children affected by SBH is ten-fold higher than
in non-affected children and is highest in LMICs
due to limitations in specialized medical and surgical care and, in some, folate deciency in the
diet.
There is an exceptionally high incidence of
SBH in Ethiopia. Neurosurgical capacity for
treatment is a relatively new development. Exact
quantication of the prevalence of SBH is still
debated and uncertain, but Dixon estimated that
40,000 pregnancies are affected each year with
10,500 live-born cases [1]. Until 2018, despite
knowledge that the problems with SBH were
highly signicant, there was no information
about the actual prevalence of SBH in Ethiopia.
Studies published in 2015 and 2018 by Sorri [2],
Berihu [3], and Gedafaw [4] determined that SB
occurs in 130/10,000 births in Ethiopia which is
26 times the rate seen in the USA where there is
universal folic acid food fortication. In Ethiopia
the condition contributes 4.5% to neonatal mortality and 6.8% to under age 5 mortality [1]. The
2018 ndings led to concern by theWHO, which
grew with time, but it was not until 2021 that, for
the rst time, the word ‘epidemic’was used in
the context of SB [5].
ReachAnother Foundation (RAF) was organized by the author (MK) and his brother (JK)
and started to work in Ethiopia in 2009, after MK
noted an extraordinarily high number of cases of
infant hydrocephalus. It has since been instrumental in the development of clinical services,
both for training neurosurgeons and for improving treatment of SBH. It has also become the
focal point and a critical force in development of
a national Ethiopian program for food fortication with folic acid in an effort to prevent SBH.
For many years, experience has taught that
SBH is not compatible with life in LMICs. As a
result, these newborns, and those with disability
in general, were seen as cursed by God and ways
were sought to “give the baby back to the river
god”. Even today terminating the baby by active
or passive means is considered acceptable, almost
regardless of the level of defect.
In the past,SBH has not been on a high priority list for the health care needs in Ethiopia. For
example,during a visit, the immediate need at a
regional hospital serving 750.000 people was a
water well, and an ambulance to transport women
with obstructed labor to the hospital. The
approach to health care in Ethiopia requires a different way of evaluating needs. Solutions that
seem obvious to a visitor frequently do not t the
clinical circumstance, and are not always welcomed by local or regional authorities. However,
sustained, close interaction between the interested and innovative visitor and local health care
facilities and their leaders eventually results in a
satisfactory functional solution.
The Medical Landscape in2009
To build a new surgical program requires knowledge, dedication, persistence, collaboration,
diplomacy, local health care, nancialand government support. After obtaining all this and
more, such initiatives frequently require much
time to achieve their goals.
In 2009 Ethiopia was a very different place
compared to 2022.
It was the era when infectious disease, malnutrition, and other maladies consumed the majority of already very scarce health care resourcesin
Ethiopia.
Spending on health care was $16 per person
per year (vs $8000in the US), but by 2019 this
was $26 (in 2019 dollars) [6]. There were few
physicians of any kind; 1/40.000 pop when in
2004 the Government decided to expand medical
education by opening more medical schools. It
started 13 new medical schools and, although by
2009 the results had not yet materialized, the
strategy was visible and improved markedly by
2021 as evidenced inthe Global Surgery report,
published in 2015in the Lancet [7].
Early Experience– 2009– SBH
simply was“not ontheradar”
There was no prevalence data and no reliable statistics about SBH in 2009. There was little neurosurgical experience in Ethiopia in 2009 except in
the capital city,Addis Ababa, at the Black Lion
7 How to Build Pediatric Neurosurgical Capacity Practice in Low- and Middle-Income Countries and…
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75
University Hospital where a neurosurgical training program was started as a cooperative project
between Bergen University in Norway, funded by
the Norwegian Peace Corps, and staffed with
cooperation of the World Federation for
Education in Neurological Surgery (FIENS) [8].
The program was extended to the private Korean
Myungsung Christian Medical Center (MCM).
The latter had a surgical service which consisted
of two Norwegian and three Ethiopian staff surgeons, supplemented by many rotating visiting
foreign surgeons in various specialties, including
neurosurgeons who operated daily. They also
partly supervised the newly developed neurosurgical residency training.
The Birth ofanIdea
The environment at MCM was stimulating and
cooperative. It welcomed innovation by the visiting surgeons and encouraged them to train the
MCM residents. One of the brilliant strategic
steps of the Director of MCM was the building of
a guest house along with the hospital. This
offered free accommodations and was equipped
with a wholesome Korean kitchen serving three
free meals per day. MCM attracted a worldwide
variety of visiting faculty, residents, and students
from distinguished academic centers. This stimulating environment permitted and encouraged an
exchange of experiences and ideas. Participation
in hospital and mobile clinics became an important learning experience for visiting attending
and resident surgeons. It encouraged them to better understand the surgical needs of the community within the existing cultural setting. For many,
this became a discovery phase which could be
then followed by an action plan to intervene in
planning of surgical health care delivery in decient areas such as treatment and follow-up of
children with SBH.A parade of young mothers
with babies with heads the size of watermelons
was a striking picture of profound suffering.
Knowing that successful treatment was possible,
and realizing that of the few who were operated
on, many were too late, one visiting general surgeon (MK) was stimulated to action which even-
tually led to the rst Ethiopian Pediatric
Neurosurgical Program. This program is still
expanding throughout Ethiopia as Pediatric
Neurosurgical Centers of Excellence.
Steps inEstablishing thePediatric
Neurosurgical Program
1. Feasibility of the intervention is the rst step
in the process of establishing a new surgical
program. At MCM it was obvious that drainage of the hydrocephalus could be accomplished not only by the visiting neurosurgeons,
but also by residents and general surgeons.
The skill was easily transferable and taught
successfully to the local neurosurgical residents. The obvious difculties were that transport of children with SBH was markedly
delayed because of the uninformed parents
(and some doctors) who did not think that any
help was possible. The delay was compounded
by inadequate roads and lack of ambulances
or any transportation to bring the children
urgently in a timely fashion to the specialists
at the hospital.
2. Consultation with the Government and
Regional Health Bureaus
SBH was untreatable until the start of the neurosurgery training program. Close cooperation with the neurosurgeons resulted in
appropriate surgical services to this very sick
pediatric population. Because of nancial
constraints of the Federal budget, foreign
NGO subsidies were and may still be required
to make such a program successful. Expansion
of the program to other universities has also
required this cooperation. The lesson learned
is that once collaboration is established, the
government should be asked to gradually
increase support for the patients, the hospital,
and for the staff. Developing these relationships is essential to effectively educate the
leaders and involve them in the development
process. It is also important to realize that
besides the Ministry of Health, many more
agencies are required to support proposals for
improvement of health care. Patience, collab-
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