Experiences from a door-to-door screening programme for developmental delay and motor impairment in Cuenca, Ecuador: A methodological study

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Reliable epidemiological data is crucial for addressing this issue, but in Ecuador, official data are limited, and fragmented health and education systems hinder effective early identification. To address this issue, an epidemiological door-to-door household survey was carried out in Cuenca, Ecuador. This paper presents a methodological review, reflecting on the challenges and lessons learned when implementing epidemiological research in a socially and economically vulnerable population. Methods The original study was a cross-sectional, descriptive survey conducted between September 2022 and March 2023 across 134 city blocks. Although designed to estimate the prevalence of developmental delay (ages 2–59 months) and motor impairment (ages 5–12 years), high attrition prevented valid prevalence estimates. The research team undertook a structured reflective analysis of the study process, to identify the causes of the high degree of participant loss to follow-up and to assess the strengths and weaknesses of the study’s methodology. Results The analysis revealed a critical weakness in the original study's design. A six-month delay between the initial screening (stage 1) and subsequent diagnostic assessments (stages 2 and 3) combined with the high mobility of the study population, was a primary driver of the 31–60% attrition between stages. Other significant challenges included: a lack of treatment pathways for participants, limited institutional support post-agreement, and the initially undeveloped soft skills of the student researchers. Strengths included reaching many unregistered children with disabilities, effective household mapping, strong inter-institutional collaboration to initiate the project, and valuable experiential learning for medical students. Recommendations arising from the review highlight the need for concurrent implementation of study stages, stronger preparatory community engagement, provision of treatment within the study protocol, and clear definition of institutional responsibilities. Conclusions This study underscores the importance of aligning methodological design with sociocultural realities. Future projects should develop community trust, secure robust institutional commitments, and integrate clear treatment into the research protocol to ensure participant retention and provide tangible community benefits. In addition to informing future research design, these findings illustrate how community-based projects can also serve as beneficial training experiences for health professionals. Developmental delay Motor impairment. Community-based screening Door-to-door surveys Childhood disability Neurodevelopment Epidemiological methods Health equity Ecuador Medical education Background The WHO Global report on health equity for persons with disabilities highlights that many children with disabilities live in precarious conditions and face social exclusion around the world ( 1 ). Ecuador has laws that protect the rights of children with disabilities, but the state does not have comprehensive programmes in place for care, education ( 2 ), or health ( 3 ) that guarantee children with disabilities a good quality of life. The absence of reliable statistical data hinders appropriate registration and results in the exclusion of these children from national policy priorities ( 4 ) Ecuador is a country where 28% of the population lives in income poverty (defined as earning less than US $ 91.43 per month), and 12.7% lives in extreme poverty (less than US $ 51.53 per month) ( 5 ). According to the 2022 VIII Population Census and VII Housing Census, 7% of the total Ecuadorian population experiences some form of functional difficulty (disability), including 4.5% of children aged 0 to 12 years. However, the census also reports that 13.5% of mothers surveyed stated that they did not know whether their children had any functional difficulties ( 6 ), possibly because a condition had not yet been diagnosed, or because parents did not recognise or accept the presence of the disability ( 4 , 7 ). The United Nations, through the 2030 Agenda for Sustainable Development Goals (SDGs), emphasises in Goal 17 (targets 18 and 19) the need to increase the availability of data and indicators by enhancing statistical capacity to measure progress in sustainable development and to strengthen national monitoring mechanisms ( 8 ). To this end, three levels of data collection on persons with disabilities (PWDs) are proposed: 1). Multi-purpose population-level data collection to include questions on disability. 2). Population-level data collection with a specific focus on disability: screening studies and disability surveys. 3). Specialized individual-level data collection, such as clinical diagnoses, to identify care or support needs or to evaluate treatment and intervention outcomes ( 9 ). Conducting population-level studies is costly and often lacks state funding. This opens the potential for partnerships between healthcare institutions and universities to improve data collection, service delivery, and professional training in the disability sector through collaborative research initiatives ( 10 – 14 ). In this context, an inter-institutional agreement was signed between the Ministry of Public Health (MSP) and the University of Cuenca to implement a descriptive epidemiological research project with three main objectives: 1). To estimate the prevalence of developmental delay in children aged 2 to 59 months and the prevalence of motor impairment in children aged 5 to 12 years in Cuenca, Ecuador. 2). To clinically assess developmental delay and motor impairment in children diagnosed with Global developmental delay (GDD), Autism spectrum disorder (ASD), hearing loss, cerebral palsy (CP), and neuromuscular diseases such as Duchenne muscular dystrophy (DMD). 3). To determine whether these children were already receiving care in rehabilitation centres. The research was conducted in the catchment area of Health Centre No. 1, Pumapungo. According to Ecuador’s Comprehensive Health Care Model (Modelo de Atención Integral en Salud, MAIS), primary healthcare units conduct extramural activities, including “active house-to-house searches,” to register and provide services to children with malnutrition, pregnant women, elderly individuals, and people with chronic diseases ( 15 ). However, the MSP does not currently implement any national programme for the early detection of developmental delays and/or disabilities in children ( 3 ). Previously, multidisciplinary neurodevelopmental teams, composed of students and academic staff from the Faculty of Medical Sciences specialising in speech therapy, physiotherapy, and early stimulation, were deployed to work in public health centres. However, the rehabilitation services that the university teams could offer were insufficient to meet the number of children with GDD and/or disabilities. To estimate the public resources required for comprehensive child disability care, it is essential to present epidemiological data to support the allocation of appropriate government funding. For this reason, the research project, “Prevalence of developmental delay and motor impairment in children aged 2 months to 12 years based on a door-to-door household survey” was launched. Although the research was carefully designed and implemented, its objectives were not fully achieved because a substantial proportion of participants were lost to follow-up. Nevertheless, the research team considers this investigation highly valuable — both for the children who had previously gone undiagnosed and for those who had been confined at home and unregistered for care, and for the medical students who gained exposure and experience working within communities. This study also demonstrates the potential of inter-institutional collaboration between ministries of health and universities for both research and service delivery. For these reasons, this methodological study ( 16 , 17 ) aims to identify the strengths of the research design, analyse the challenges encountered during implementation that led to case loss over the course of the study, and provide recommendations to inform future research in similar contexts. Research Summary "Prevalence of developmental delay and motor impairment in children aged 2 months to 12 years based on a door-to-door household survey" This was a cross-sectional, descriptive epidemiological study based on door-to-door household surveys ( 14 , 18 ) conducted between September 2022 and March 2023, during the COVID-19 pandemic. The study received ethical approval from a human research ethics committee. Convenience sampling was undertaken to identify children who were homebound, hidden, or otherwise excluded from official censuses, including undocumented migrant populations ( 12 ). To evaluate the representativeness of the study area (an urban sector of Cuenca) its Living Conditions Index (LCI) was compared with the citywide average. The LCI is a composite indicator developed by Daniel Orellana Vintimilla et. al (2017) that combines measures of housing quality, access to education, and access to healthcare. LCI values range from 0 to 1, and the study area had an LCI of 0.81; higher than the city’s mean LCI of 0.67 by 0.6 standard deviations ( 19 ) ( 20 ). The study area contained housing, public and private hospitals, clinics, commercial establishments, and 15 educational institutions. A distinguishing feature of this sector—and Cuenca more broadly—is the relocation of middle- and upper-income families from these city centre sectors to less densely populated suburban areas. The families who have departed often rent their former central residences to businesses or convert them into conventillos —multi-family dwellings—resulting in overcrowded conditions ( 21 , 22 ). The research team conducted fieldwork across 134 city blocks, surveying 2,996 households and identifying 1,341 children aged between two months and twelve years ( 20 ). The research project was structured in three stages, each incorporating recommended best practices for this type of investigation ( 12 , 23 , 24 ). Stage one involved the identification of “suspected cases of developmental delay” and “suspected motor impairment”, carried out by two academic supervisors and 15 final-year undergraduate medical students undertaking their paediatrics rotation. For children aged 2 to 59 months, screening followed the 2017 guidelines of the Integrated Management of Childhood Illnesses (IMCI) ( 25 , 26 ). For those aged 5 to 12 years, two standardized screening questions were applied ( 27 – 29 ): 1). "Does the child show delays in movement compared with peers in any of the following: getting up from the floor, sitting, standing, walking, or running?". 2). "Does the child fall frequently?". An affirmative response to either question classified the case as “suspected motor impairment”. These questions aimed to detect mobility disorders such as cerebral palsy, neuromuscular diseases (e.g., Duchenne muscular dystrophy) ( 30 – 32 ), and other genetic or infectious etiologies ( 33 , 34 ). Stage two consisted of diagnostic confirmation. Children aged 2 to 59 months with suspected developmental delay were assessed by early intervention professionals using the Battelle Developmental Inventory ( 35 , 36 ) to confirm specific or global developmental delay ( 37 – 39 ). Children aged 5 to 12 years with suspected motor impairment underwent neurological assessment and were categorized as having upper motor neuron syndrome (UMNS), lower motor neuron dyndrome (LMNS), or an indeterminate condition. Stage three involved differential diagnosis by specialists in genetics, audiology, and paediatric neurology. The demographic data collected included age, sex, school attendance, and use of rehabilitation services. Informed consent was obtained from a parent or caregiver at each stage of the assessment. Following diagnosis, written summary reports were delivered directly to the child's primary caregiver. The first stage of screening lasted six months. Owing to financial constraints, stages two and three were conducted subsequently, as concurrent implementation would have significantly increased costs. These stages took place at an assessment centre established within the Faculty of Medical Sciences at the University of Cuenca, located 200–500 metres from participants’ homes. Appointments were scheduled with caregivers by telephone and could be rescheduled up to three times. The option of a home visit was offered. A child was classified as “lost to follow-up” if informed consent was not signed for subsequent stages, or if the child was not evaluated after three missed appointments and the caregiver was unavailable at home. Of the 1,341 children identified in the study area, 703 (52.4%) were evaluated. Among them, 234 (33.29%) were aged 2 to 59 months, and 469 (66.71%) were aged 5 to 12 years. The sex distribution was balanced. Most children (76.7%) were enrolled in an educational institution. In stage one, 93 of the 234 children aged 2 to 59 months (40%) were classified as having suspected developmental delay, while four (2%) were lost to follow-up. In stages two and three the attrition rate exceeded 60%. Among those assessed, one case of epilepsy, three children with dysmorphic features (suggestive of genetic syndromes), and five with abnormal neurological findings were identified. No children presented with hearing loss. Among the 469 children aged 5 to 12 years, 22 (4.7%) were suspected of having motor impairment. The attrition rates of the various specialist evaluations in stages two and three ranged from 31–60%. The diagnoses included three cases of UMNS, one with Dravet syndrome, and eight children with indeterminate neurological conditions. Six children presented with dysmorphic features. No hearing impairment was reported. Owing to the high attrition rates in stages two and three, only the prevalence of suspected developmental delay and suspected motor impairment from stage 1 could be estimated. At 40% and 4.7% respectively, both values were high. None of the children with confirmed conditions were receiving rehabilitation services at the time of evaluation. Methodology A detailed research report was initially developed. This was followed by a qualitative, reflective analysis undertaken by the research team to inform the development of this paper. The objective was to evaluate the implementation of the study, focusing on identifying its strengths, challenges—particularly those contributing to loss to follow-up—and recommendations for future research in similar contexts ( 40 – 43 ). Results Data collection Strengths A map of the study area was developed, detailing the total number of commercial establishments, healthcare facilities, educational institutions, and residential dwellings (20). This mapping facilitated systematic, door-to-door visits during which the numberd of households, families, and children were recorded. Visits were scheduled according to the availability of the families. Where informed consent had been provided by the mother, multiple attempts were made to complete the child’s developmental assessment. A total of 703 children between 2 months and 12 years of age were evaluated, allowing for the identification of suspected developmental delay and motor impairment, and offering the opportunity for subsequent confirmatory diagnostic assessment. Twelve children aged 5 to 12 years were identified as having motor disabilities and were not receiving healthcare or education at the time of evaluation. Children with suspected developmental delay or motor impairment were referred to a rehabilitation centre for further care. Challenges A total of 52.4% of parents signed the informed consent form. Stages two and three were initiated only after the completion of stage one, which lasted six months. This delay contributed to substantial loss to follow-up, as many families, predominantly migrants and informal workers, tended to vacate their rented dwellings within three to five months due to financial constraints. Consequently, it many cases it became impossible to conduct the second and third stages of assessment. Furthermore, despite multiple attempts to arrange and rearrange appointments, families often failed to attend the scheduled appointments for follow-up evaluations. Because a convenience sample was used (using an area familiar to the researchers from previous studies), the prevalence for the entire city could not be estimated. Adverse housing conditions, heavy traffic, and environmental noise interfered with the implementation of the assessment protocols in the field. The considerable number of children to evaluate combined with having only two health professionals in the field meant that medical students often evaluated the children without the presence of a health professional for guidance. Diagnostic testing was not available for children who presented with dysmorphic features and suspected chromosomal or monogenic syndromes. This limitation fell short of family expectations, and some families chose to withdraw from the study because of this, which made it impossible to estimate the prevalence of these specific conditions. Recommendations Begin with a robust community dissemination strategy outlining the objectives, significance, and stakeholders of the research. This approach helps build trust and foster motivation among families. Publicise the assessment schedules in advance and ensure flexibility in adapting research timelines to accommodate the specific needs and constraints of the target population. Initial screening and follow-up evaluations should be implemented concurrently to reduce loss to follow-up. If the study objective is to estimate city-wide prevalence, several clusters should be selected probabilistically (e.g., 30 blocks with probability proportional to size) and households should be sampled within each cluster. However, if the aim is to identify the maximum number of children with disabilities who remain confined to the home and are excluded from formal services, the original convenience sampling approach should be maintained, as travel between survey locations is minimized, allowing researchers to visit more homes in the same period of time. Prepare students and teachers to administer the diagnostic tools in the full range of field conditions they are expected to encounter and how to adjust for these. In addition to presurvey training, it would be valuable to employ enough health professionals so that they can accompany students during door-to-door screenings at regular intervals to provide support, guidance, and feedback. The MSP and university agreement Strengths The implementation of the study was supported by an inter-institutional agreement, which facilitated collaboration between governmental and academic sectors. University teachers and students who engaged in data collection were provided with official Ministry of Health identification badges, which reinforced the initiative’s legitimacy and created trust with participating families. The research was integrated within an official programme of the Ecuadorian government, ensuring administrative support and alignment with national health and education priorities. Challenges Institutional engagement from both the MSP and the university was limited after the initial agreement phase. The University of Cuenca did not provide facilities to carry out the evaluation, which hampered the study’s implementation. The researchers experienced numerous instances of “red tape”, both from the university and health ministry, while obtaining permissions to carry out the investigation’s activities. The professionals at the health centres were occupied with their existing clinical work, which restricted their ability to accompany students during door-to-door visits, and no alteration in their schedules was made. This also meant that when children with disabilities were discovered, and referrals were made to the health centre, it was difficult for these new patients to be seen as the doctors already had full workloads. Recommendations It is essential to clearly delineate the responsibilities of institutional stakeholders to streamline research processes and reduce procedural delays. Furthermore, community-based child health monitoring, and early identification of neurodevelopmental disorders and developmental delays, should be emphasized as strategic priorities within integrated service delivery models and medical academic curricula. During the agreement stage, secure commitments from governmental health bodies that health professionals will maintain appointment slots open for the patients that will be discovered through the investigation program, to ensure the patients can begin treatment quickly after initial detection. The research team Strengths Academic staff with expertise in child neurodevelopment and community-based healthcare guided students during field activities, fostering professional accountability. The survey area was designed to be geographically accessible for both students and faculty. The research coordinating team and academic supervisors addressed operational issues in a timely manner. Supervisors, students, and health professionals demonstrated expertise in the administration of diagnostic instruments across each of the study stages. The tasks conducted were embedded within the students’ medical curriculum. The programme promoted the development of professional competencies in the students, such as building authentic relationships with families, recognising social determinants of child health, and engaging meaningfully with community-based institutions. Evaluators consistently adhered to ethical standards and employed developmentally appropriate, child-sensitive communication during interactions with children and caregivers. Challenges Initially, some students perceived the community-based component as having limited relevance to their clinical training. However, as the study progressed, most acknowledged the educational and professional value of the experience. A small number of students experienced emotional fatigue, a lack of empathy towards participants, or difficulty managing distress during fieldwork. In certain cases, this affected the confidence of families participating in the assessments. A few students expressed apprehension when entering households they perceived as potentially unsafe. Recommendations Affective and psychological support should be made available to both students and academic staff engaged in community-based data collection. This would strengthen their skills in empathetic communication. It is also important to conduct prior risk assessments of the study area and to implement discreet, context-sensitive safeguarding measures to protect the wellbeing of both research personnel and participating families. The children's families Strengths The empathy and trust established by the research team facilitated the participation of 52% of families in the screening and evaluation process. The child’s mother or primary caregiver received a written report detailing the results, which was personally delivered by a supervising academic. Children who were diagnosed and were not attending any childcare or health facility at the time of assessment were referred to appropriate services for therapeutic intervention. Challenges The study area, characterized by an urban area with a mix of commercial and residential buildings, had a highly mobile population, with families frequently relocating every 3 to 5 months. This context made it difficult to identify community leaders to support research activities. For many families, securing an income through informal employment took precedence over remaining at home for evaluation appointments. Additionally, some families perceived the study as an initiative intended for institutional benefit rather than community welfare. Negative responses from caregivers—including denial, scepticism, and distress—in response to suspected developmental delays may have contributed to loss to follow-up. Families of children identified with suspected developmental delay or suspected motor impairment expressed expectations that extended beyond diagnostic screening. Many inquired about referrals for rehabilitation, genetic testing, specialist consultations, and personalized treatment plans. However, as the research protocol did not include clinical interventions, several families experienced disappointment and subsequently declined to participate in further study phases. In cases requiring therapeutic services, referrals were issued to public rehabilitation centres. These centres, often situated at significant distances from the families’ homes and with limited opening hours, posed substantial barriers to access. Recommendations Before carrying out the survey, undertake a sociocultural assessment to identify community leaders that could facilitate community engagement with research initiatives. Prepare an integrated referral and care system for children identified with neurodevelopmental difficulties, ensuring prompt access to diagnostic confirmation and early intervention services. Communication with caregivers should be empathetic, culturally sensitive, and comprehensive, providing not only diagnostic clarity but also guidance on available resources. It is essential to offer sustained emotional support to families navigating the implications of developmental disorders, acknowledging the psychological and social dimensions of these experiences. If the ministry of health is unable to guarantee dedicated treatment slots for new patients discovered through the door-to-door program, it may be possible to utilise health science students to provide regular, flexible, home visits to deliver treatment. Discussion We assessed a large number of children, determining the prevalence of those with a probability of disability, and finding children with disabilities who were homebound and not receiving any care. This in itself is seen as one success of the investigation. While we discovered many children with undiagnosed disabilities and developmental delays, many children were lost to follow-up. Why were cases lost at stages 2 and 3? Primarily, the large time gap between the initial screening and the later stages meant that many families had moved away and could not be contacted. The delay was caused by financial constraints that required the team to first identify all cases of children with potential developmental delay before proceeding to hire professionals for stages 2 and 3. This approach ensured that the exact number of professionals needed were employed, avoiding unnecessary expenditures. Amin Bredan ( 44 ), noted similar issues, describing in his editorial how financial constraints cause difficulties in achieving the objectives of a project and suggesting adjustments such as simplifying the objectives of the study, or collaborating with international partners with greater access to resources. Other areas that impacted the study’s execution were the underdeveloped soft skills of the students ( 10 , 45 ), the limited ongoing support of the institutions ( 46 ), and the feelings of the children's families towards the study ( 47 ). The weakness in the soft skills of the student-researchers, and their subsequent development during the study, corresponds with the research by Palakshappa – 2022 ( 11 ), Naali- 2021 ( 45 ) and Ampofo et al. 2024 ( 46 ), Rimando et al. 2015 ( 43 ), and Bittner and Kempchen- 2024 ( 48 ) that highlight the benefits for medical students to participate in community-based education. The authors demonstrate how community-based work can be an integral component of medical students' training, enhancing students' understanding of the social determinants of health, increasing their willingness to work in rural areas, and strengthening their commitment to public health and social responsibility. In addition, the community-based work developed the students’ autonomy and initiative, research skills, application of knowledge, interpersonal skills, confidence, and ability to deal with complex problems. The variable level of support we received from institutions contrasts with the successful experience of inter-institutional cooperation in a case study by Cech and Alvarado ( 49 ) of work also done in Ecuador. Their research presents a positive model of community-based rehabilitation, achieved through a strong partnership between the non-governmental organization ‘Causes for Change International’ (CCI), the local government, several universities, and the state health service. This partnership demonstrated the ability to gather essential information on community needs, develop services for and with the community, and to effectively evaluate the effectiveness of its interventions. Through implementing their programmes over many years, the NGO gained the trust of communities and local governments, empowered local groups, and developed the leadership skills of local people. A specific example of collaboration within this project was the involvement of health science students from the University of Milagro and Dominican University in a school for children with disabilities, applying their education in areas such as social work, physiotherapy, and occupational therapy. Two key differences surface between the work of CCI and our own study that explain the success they had in contrast to the difficulties we faced. Above all was the length of time that CCI work with their communities. Our study had a data collection period of 6 months, with discussions with the ministry of health happening for a period of two months beforehand. While, by the time of writing the case study, CCI had worked in some communities for 20 years. A second factor, albeit linked, was the repeated lack of treatment offered to our study participants for the diagnoses given in door-to-door health surveys over time, with our study being merely the latest of these. This contributed significantly to the high rates of refusal to participate and loss to follow-up. In contrast, CCI existed to provide treatments. The continued provision of medical, dental and audiology services, wheelchairs, crutches, and hearing aids, amongst other interventions, would have developed strong trust in the organization to provide further benefits to the communities in the future and increase community willingness to participate. Despite not improving the relationship between the university and the Ministry of Health directly from this project, from the example of CCI, we have confidence that continued collaborations over a larger time span will lead to a strengthening of the partnership. While a rigorous selection of screening tools was carried out, researchers were trained to evaluate subjects thoroughly, and the data was meticulously reviewed for any errors, the affection, perception, fears, and trust of the families were not addressed. The diagnosis of disability does not only depend on the use of validated tools but also on providing the empathy and support families require during the process. Mfutso-Bengo et al., 2008 ( 47 ) reported that among the reasons for people refusing to participate in health research were: lack of benefits from the study, vague informed consent procedures, fear of strangers, previous negative experiences of research, and the researchers’ lack of cultural sensitivity. During the initial door-to-door screening, we estimate that previous negative experiences of research impacted the high refusal rate of parents to enter into the study initially. Then, during the study itself, we encountered many cases where the lack of benefits offered (of treatment after diagnosis) deterred families from continuing through the process, and some issues with unclear informed consent, where parents believed treatment would be provided, and so were left disappointed and withdrew midway through the study. Dwarakanathan et al.’s 2018 commentary article about the challenges when conducting community-based research ( 12 ) highlights the same reasons for refusal; previous negative experiences, lack of perceived benefits, and poor informed consent procedures, amongst others. Mfutso-Bengo et al. recommended ensuring a robust and understandable informed consent process, building long-term trusting and credible relationships with the community, having strong interpersonal skills, having transparency about compensation and support, and obtaining collaboration with community leaders and local authorities. Research by Pearson et al, 2020 ( 50 ) reports that parents feel frustrated when diagnoses do not translate into tangible improvements in their children's quality of life, and when researchers collect data promising to introduce public policies and projects but then do not return and nothing changes in the community. Heslon et al, 2024 ( 51 ) highlights the need for a systematic, comprehensive, and standardized approach to care services for children with neurodevelopmental disorders and their families. The delay in offering second and third stage evaluations to the children identified with "suspected developmental delay" in our study caused families to return to their position of disbelief and not respond to the call for stages 2 and 3. This leads to an interesting consideration when carrying out medical research in developing countries. In developed countries, where the access to medical attention is better, the discovery of an illness or disability through a research project provides high value to the study participant (or parent of), encouraging initial participation and continued engagement. Where there is a lack of access to treatments, any discovery of illnesses or disabilities may not benefit the participant, and therefore there is little incentive to participate. As experienced in our research, when this lack of treatment access has occurred several times—different researchers entering communities, collecting data, then leaving—populations can become disillusioned, impacting the research projects that follow. It is therefore a recommendation from this study that, where treatment for the health condition being investigated would be difficult to obtain elsewhere, the research project should have funding allocated for treatment within the study programme. When this is provided, participation rates should be high, and the willingness to participate in future medical research should also be bolstered. Conclusions This methodological study illustrates both the promise and the complexity of implementing door-to-door screening for identifying developmental delay and motor impairment among children in underserved urban settings in a developing country. Despite its limitations, the project achieved one of its most critical goals: the identification of children with previously undiagnosed disabilities who were not receiving any form of intervention. This confirms that many children with neurodevelopmental disorders remain hidden from the healthcare and education systems in Ecuador. Key findings highlight that while screening at scale is feasible through academic–health system partnerships, substantial loss to follow-up during diagnostic and referral stages undermines the ability to collect comprehensive epidemiological data. This was primarily due to delays between stages, high population mobility, and the absence of guaranteed access to treatment services—factors that are especially pronounced in contexts of socioeconomic vulnerability. The study underlines several strategic recommendations for future implementation: concurrent evaluation stages to minimise attrition, clear institutional responsibilities, integration of treatment or referral pathways into the research protocol, and proactive community engagement with attention to psychosocial barriers such as denial, mistrust, and previous negative experiences with healthcare or research. The participation of medical students in this research not only helped gather essential data but also demonstrated the transformative value of community-based education in shaping empathetic, socially engaged health professionals. However, the students’ learning journey also highlighted the need for more robust preparation and emotional support in such settings. Ultimately, this study reaffirms the necessity for sustained, well-resourced, and trust-based collaborations between universities, health ministries, and communities. For early identification efforts to be effective and ethical in low-resource settings, they must be coupled with timely access to services and a genuine commitment to improving the lives of children with disabilities—not merely documenting their existence. Abbreviations ASD: Autism spectrum disorder CP: Cerebral palsy DMD: Duchenne muscular dystrophy GDD: Global developmental delay IMCI: Integrated Management of Childhood Illness INEC: National Institute of Statistics and Census (Ecuador) LCI: Living Conditions Index LMNS: Lower motor neuron syndrome MAIS: Modelo de Atención Integral en Salud (Comprehensive Health Care Model) MSP: Ministry of Public Health (Ecuador) PWDs: Persons with Disabilities SDGs: Sustainable development goals UMNS: Upper motor neuron syndrome Declarations Ethics approval and consent to participate The research project was approved by the Human Research Ethics Committee of the Catholic University of Cuenca under code CEISH-UCACUE-081. The inter-institutional collaboration between the Ministry of Public Health and the University of Cuenca was formalized in an agreement signed by both parties. The research was conducted in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from the parents or legal guardians of all participants. Clinical trial number Not applicable. Consent for publication Not applicable. Availability of data and materials The dataset supporting the conclusions of this article is available in the CEDIA Dataverse repository, https://doi.org/10.48661/PIUR7N [20]. Competing interests The authors declare that they have no competing interests Funding This work was funded PTC Therapeutics S.A. and Fundación Huiracocha Tutivén. Authors' contributions MLHT designed and conducted the research, coordinated the data collection, analyzed and interpreted the data, and drafted the manuscript. GN was responsible for data recording and quality assurance, data analysis and interpretation, and co-wrote the manuscript. JT, DV, MMB, MMD, and XB contributed substantially to data collection and fieldwork implementation. All authors read and approved the final manuscript. Acknowledgements We would like to thank the health and education professionals who contributed to the data collection process, the students who participated in gathering the information, and the parents and their children whose trust made this research possible. References Global report on health equity for persons with disabilities [Internet]. Geneva: World Health Organization; 2022 [cited 2024 Aug 16]. Available from: https://reliefweb.int/report/world/global-report-health-equity-persons-disabilities-enarruzh Jimenez AS, Quinto NMM, Yambo MLC, Mendez KV. Inclusion educativa de estudiantes con discapacidades en escuelas publicas ecuatorianas. 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Available from: https://www.ecuadorencifras.gob.ec/documentos/web-inec/POBREZA/2024/Diciembre/202412_Boletin_pobreza.pdf Instituto Nacional de Estadistica y Censos. Resultados provinciales [Internet]. Quito: INEC; 2022 [cited 2024 Aug 29]. Available from: https://www.censoecuador.gob.ec/ecuadormap/ Asa GA, Fauk NK, Mwanri L, Ward PR. Understanding barriers to the access to healthcare and rehabilitation services: a qualitative study with mothers or female caregivers of children with a disability in Indonesia. Int J Environ Res Public Health. 2021;18(21):11546; doi:10.3390/ijerph182111546. United Nations. Transforming our world: the 2030 agenda for sustainable development [Internet]. New York: UN; 2015 [cited 2024 Aug 16]. Available from: https://sdgs.un.org/sites/default/files/publications/21252030%20Agenda%20for%20Sustainable%20Development%20web.pdf UNICEF. Producing disability-inclusive data: why it matters and what it takes [Internet]. New York: UNICEF; 2020 Jul [cited 2024 Jul 29]. Available from: https://data.unicef.org/resources/producing-disability-inclusive-data-why-it-matters-and-what-it-takes/ Woollard RF. A better understanding of the relationship between a medical school, its students and the communities which it serves. Med Teach. 2022;44(11):1192-3; doi: 10.1080/0142159X.2022.2114581. Palakshappa D, Denizard-Thompson N, Puccinelli-Ortega N, Brooks A, Damman A, Miller DP Jr. The experiences of community organizations partnering with a medical school to improve students’ understanding of the social determinants of health: a qualitative study. Med Teach. 2022;44(11):1260-7; doi: 10.1080/0142159X.2022.2056007. Dwarakanathan V, Kumar A, Nongkynrih B, Kant S, Gupta S. Challenges in the conduct of community-based research. Natl Med J India. 2018;31(6):366; doi: 10.4103/0970-258X.262911. Germani ACCG, Cahu FGDM, Miranda FES, Gomes FGDL, Grangeiro PM, Schmitt ACB, et al. Health promotion to people with disabilities: case report from two university extension projects. Res Soc Dev. 2022;11(1):e56111124956; doi: 10.33448/rsd-v11i1.24956. Paneth N. The contribution of epidemiology to the understanding of neurodevelopmental disabilities. Dev Med Child Neurol. 2023;65(12):1551-6; doi: 10.1111/dmcn.15633. Ministerio de Salud Publica. Manual del modelo de atencion integral de salud – MAIS [Internet]. Quito: Ministerio de Salud Pública; 2013 [cited 2024 Jul 29]. Available from: https://dspace.uniandes.edu.ec/handle/123456789/12194 Mbuagbaw L, Lawson DO, Puljak L, Allison DB, Thabane L. A tutorial on methodological studies: the what, when, how and why. BMC Med Res Methodol. 2020;20(1):226; doi: 10.1186/s12874-020-01107-7. Lawson DO, Puljak L, Pieper D, Schandelmaier S, Collins GS, Brignardello-Petersen R, et al. Reporting of methodological studies in health research: a protocol for the development of the MethodologIcal STudy reportIng Checklist (MISTIC). BMJ Open. 2020;10(12):e040478; doi: 10.1136/bmjopen-2020-040478 Silman AJ, Macfarlane GJ, Macfarlane T. Epidemiological studies: a practical guide. 3rd ed. Oxford: Oxford University Press; 2018; doi: 10.1093/med/9780198814726.001.0001 Orellana D, Quezada A, Andrade S, Ochoa-Avilés A. Metodología para definición de conglomerados de muestreo espacial en el entorno urbano basados en caminabilidad y factores socioeconómicos. In: V Congreso REDU; October 2017; Cuenca, Ecuador. Huiracocha-Tutiven L, Newell G, Tipan-Barros J. Replication data for: experiences from a door-to-door screening programme for developmental delay and motor impairment in Cuenca, Ecuador: a methodological study [Internet]. Cuenca: CEDIA; 2025 [cited 2025 Aug 20]. Available from: https://indata.cedia.edu.ec/dataset.xhtml?persistentId=doi:10.48661/PIUR7N Pauta Calle FV. Housing and urban renewal in historic centers: A case study on Cuenca (Ecuador). Estoa. 2019;8(15):115-31; doi: 10.18537/est.v008.n015.a10. Pacheco Avilés DI, Sarmiento Sánchez XA. El conventillo como tipologia de vivienda en el centro historico de Cuenca [undergraduate thesis on the Internet]. Cuenca: Universidad de Cuenca; 2015 [cited 2025 Apr 15]. Available from: http://dspace.ucuenca.edu.ec/handle/123456789/22315 Fondo de Naciones Unidas para la Infancia. ECDI2020: indice de desarrollo de la primera infancia. Instrucciones para los entrevistadores. New York: UNICEF; 2020. UNICEF. Collecting data on early childhood development in household surveys [Internet]. New York: UNICEF; 2024 [cited 2024 Jul 24]. Available from: https://data.unicef.org/resources/collecting-data-on-early-childhood-development-in-household-surveys/ Figueiras AC, Neves de Souza IC, Rios VG, Benguigui Y. Manual para la vigilancia del desarrollo infantil (0-6 anos) en el contexto de AIEPI. 2nd ed. [Internet]. Washington (DC): Pan American Health Organization; 2011. (OPS/FCH/HL/11.4E) [cited 2025 Apr 15]. Available from: https://www.paho.org/es/documentos/manual-para-vigilancia-desarrollo-infantil-0-6-anos-contexto-aiepi-segunda-edicion-2011 Lliguisaca Segarra MA, Mariño Arias AF. Validación del instrumento de AIEPI que evalúa el desarrollo psicomotor en niños y niñas de 2 a 60 meses de edad que asisten a las instituciones infantiles del área urbana del cantón Cuenca. 2008-2009 [undergraduate thesis on the Internet]. Cuenca: Universidad de Cuenca; 2010 [cited 2022 Aug 26]. Available from: http://dspace.ucuenca.edu.ec/handle/123456789/3754 Araújo A, Fortes C, Nardes F, Jorge E, Raskin S. The role of the pediatrician in suspected neuromuscular diseases in childhood. Resid Pediatr. 2023;13(4):1-11; doi: 10.25060/residpediatr-2023.v13n4-901. Sadowska M, Sarecka-Hujar B, Kopyta I. Cerebral palsy: current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatr Dis Treat. 2020;16:1505-18; doi: 10.2147/NDT.S235165. Dan B, Rosenbaum P, Carr L, Gough M, Coughlan J, Nweke N. Proposed updated description of cerebral palsy. Dev Med Child Neurol. 2025;67(6):1-10; doi: 10.1111/dmcn.16274. David LK, Vidona WB, David LK, Vidona WB. A review study of Cerebral palsy as a motor disability syndrome in children. World J Adv Res Rev. 2021;12(1):112-6; doi: 10.30574/wjarr.2021.12.1.0418. Chikkannaiah M, Reyes I. New diagnostic and therapeutic modalities in neuromuscular disorders in children. Curr Probl Pediatr Adolesc Health Care 2021;51(7):101033. Duan DS, Goemans N, Takeda S, Mercuri E, Aartsma-Rus A. Duchenne muscular dystrophy. Nat Rev Dis Primer [Internet]. 2021;7(1) [cited 2022 Sep 7]. Available from: https://hdl.handle.net/1887/3212853 Meyns P, Van Den Bogaart M, Theunissen K, Van Der Krogt MM, Ortibus E, Desloovere K. Editorial: Motor control of gait and the underlying neural network in pediatric neurology. Front Hum Neurosci. 2019;13:226; doi: 10.3389/fnhum.2019.00226. Trabacca A, Ferrante C, Oliva MC, Fanizza I, Gallo I, De Rinaldis M. Update on inherited pediatric motor neuron diseases: clinical features and outcome. Genes. 2024;15(10):1346; doi: 10.3390/genes15101346. Nweborg J, Stock J, Wnek L, Cruz López V, González Criado M. Battelle. Inventario de Desarrollo [Internet]. 4th ed. Madrid: TEA ediciones; 2011 [cited 2022 Sep 7]. Available from: https://www.hogrefe-tea.com/recursos/Ejemplos/Battelle-Manual-Extracto.pdf Sanz López Y, Guijarro Granados T, Sánchez Vázquez V. Inventario de Desarrollo Battelle como instrumento de ayuda diagnóstica en el autismo. Rev Asoc Esp Neuropsiquiatría. 2007;27(2):31-45; doi:10.4321/S0211-57352007000200004. Mithyantha R, Kneen R, McCann E, Gladstone M. Current evidence-based recommendations on investigating children with global developmental delay. Arch Dis Child. 2017;102(11):1071-6; doi: 10.1136/archdischild-2016-311271. Klaehn RLP. DC:0-5 TM: Diagnostic classification of mental health and developmental disorders of infancy and early childhood: Book Review. Primera. Vol. 39. Washington, DC: Zero to Three; 2016; doi: 10.1002/imhj.21714. Aldosari A, Aldosari T. Comprehensive evaluation of the child with global developmental delays or intellectual disability. Clin Exp Pediatr. 2024;67(9):435-46; doi: 10.3345/cep.2023.01697. Aiyub A, Novitayani S, Marthoenis M. Challenges of data collection for research in a developing country. In: Proceedings of the Aceh International Nursing Conference–AINC 2018. p. 164-9; doi: 10.5220/0008396001640169. Khan MB, Nausheen S, Hussain I, Hackett K, Zehra K, Feroze K, et al. Conducting household surveys on reproductive health in urban settings: lessons from Karachi, Pakistan. BMC Med Res Methodol. 2021;21(1):38; doi: 10.1186/s12874-021-01216-x. Sarma SK. Data collection in organizational research: experiences from field. Int J Rural Manag. 2015;11(1):75-81; doi: 10.1177/097300521556938. Rimando M, Brace A, Namageyo-Funa A, Parr TL, Sealy D, Davis TL, et al. Data collection challenges and recommendations for early career researchers. Qual Rep. 2015; 20(12), 2025-2036; doi: 10.46743/2160-3715/2015.2428. Bredan A. Conducting publishable research under conditions of severely limited resources. Libyan J Med. 2020;15(1):1688126; doi: 10.1080/19932820.2019.1688126. Naali R. Medical Students’ Perception of Community-Based Education Research and Services (COBERS) In Mbarara University of Science and Technology. SJHR-Africa. 2021;2(3), 14; doi: 10.51168/sjhrafrica.v2i3.24. Ampofo GD, Osarfo J, Tagbor HK. Medical students’ perceptions of a community-engaged learning approach to community health in Ghana: the Students’ Community Engagement Programme (SCEP). BMC Med Educ. 2024;24(1):1400: doi: 10.1186/s12909-024-06409-8. Mfutso-Bengo J, Masiye F, Molyneux M, Ndebele P, Chilungo A. Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area. Malawi Med J. 2008;20(2):57-63. Bittner J, Kempchen J. Exploring Students’ Feelings in the Initial Phase of a Community-Based Research Service-Learning Course: A Qualitative Approach Using Content Analysis. Int J High Educ Pedagog. 2024;5(3):1-20; doi: 10.33422/ijhep.v5i3.749. Cech DJ, Alvarado ZJ. Collaborating with communities and higher education to address the health-care needs of individuals with disabilities in Ecuador. Front Public Health. 2017;5:91; doi:10.3389/fpubh.2017.00091. Pearson T, Wagner S, Schmidt G. Parental perspective: Factors that played a role in facilitating or impeding the parents’ understanding of their child’s developmental diagnostic assessment. Child Care Health Dev. 2020;46(3):320-6; doi: 10.1111/cch.12751. Heslon K, Hanson JH, Ogourtsova T. Mental health in children with disabilities and their families: red flags, services’ impact, facilitators, barriers, and proposed solutions. Front Rehabil Sci. 2024;5:1347412; doi: 10.3389/fresc.2024.1347412. Table Table 1. Challenges and recommendations from the door-to-door survey in Cuenca, Ecuador Challenges Recommendations Data collection Not all families signed the consent form for the evaluation. Strengthen public trust in the research initiative beforehand to enhance participation and reduce loss to follow-up. Evaluation environment was not ideal due to housing conditions and noise. Prepare teachers and students to apply assessment tools effectively in resource-limited or difficult field conditions. Parents and their children didn’t attend follow-up evaluation appointments of stages two and three because of the large gap between their stage one evaluation and the start of stages two and three. Implement stages concurrently, as staggered execution contributed to reduced attendance at follow-up evaluations Medical students often evaluated the children without the presence of health professionals. Ensure enough professionals are employed so that they can accompany students during door-to-door screenings at regular intervals to provide advice and feedback. MSP and University Agreement Limited engagement from the Ministry of Public Health and the University During the agreement stage, clearly define responsibilities of the institutional authorities – any provision of staff, facilities, etc. Health centre professionals were unable to accompany the students in the field as agreed due to their ongoing workloads at the health centres Explore the possibility of utilising medical and nursing students to assume some of the workload of the health centre staff (for example, recording medical histories) to create time for the professionals to support the students in the field work. Health centre doctors were unable to attend to the additional patients detected through the investigation program. During the agreement stage, secure agreement that the doctors at the health centres will maintain appointment slots open for patients that are discovered through the investigation program. Research team Students had doubts of their competence in evaluating patients Assign experienced professionals to mentor and shadow students during their initial door-to-door visits, helping to build their confidence and provide real-time guidance and reassurance. Some students were afraid of working in the area and of entering the buildings to perform the evaluations, which lead to decreased empathy with families Pair students with seasoned healthcare workers during the first few door-to-door visits to help them navigate the environment safely and ease their anxiety. Children's families Difficulty in finding a community leader to animate participation in a population that moves to new accommodation every 3 to 5 months. Dedicate time before the commencement of the evaluations to identify and link with community leaders. Parents prioritized work over making time for their children's evaluations Ensure that the professional team can accommodate the working schedules of the parents Encourage the parents to take time off from work to bring their children for evaluations Lack of belief of some families in the benefits of the research. Explain the benefits of obtaining early diagnosis for the development of their child Present to the parents an example of the report they will receive at the end of the project and explain how it can be used to obtain further treatment Feelings of denial by some parents to accept their child's diagnosis. Employ a psychologist on the team to provide psychological support to families with children who are diagnosed with a disability. Higher family expectations of treatment than the research could offer them. Set clear expectations with families about the research scope and its treatment limitations The centres their children had been referred to during previous government programs were often too far away, with inconvenient opening hours, leading some parents to feel unmotivated to go through another evaluation process, given their low expectation of receiving treatment. Explore the possibility of utilising health science students to provide regular, flexible-hours, home visits to deliver treatment. Additional Declarations No competing interests reported. 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Ecuador has laws that protect the rights of children with disabilities, but the state does not have comprehensive programmes in place for care, education (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), or health (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) that guarantee children with disabilities a good quality of life. The absence of reliable statistical data hinders appropriate registration and results in the exclusion of these children from national policy priorities (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eEcuador is a country where 28% of the population lives in income poverty (defined as earning less than US\u003cspan\u003e$\u003c/span\u003e91.43 per month), and 12.7% lives in extreme poverty (less than US\u003cspan\u003e$\u003c/span\u003e51.53 per month) (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). According to the 2022 VIII Population Census and VII Housing Census, 7% of the total Ecuadorian population experiences some form of functional difficulty (disability), including 4.5% of children aged 0 to 12 years. However, the census also reports that 13.5% of mothers surveyed stated that they did not know whether their children had any functional difficulties (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e), possibly because a condition had not yet been diagnosed, or because parents did not recognise or accept the presence of the disability (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe United Nations, through the 2030 Agenda for Sustainable Development Goals (SDGs), emphasises in Goal 17 (targets 18 and 19) the need to increase the availability of data and indicators by enhancing statistical capacity to measure progress in sustainable development and to strengthen national monitoring mechanisms (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). To this end, three levels of data collection on persons with disabilities (PWDs) are proposed: 1). Multi-purpose population-level data collection to include questions on disability. 2). Population-level data collection with a specific focus on disability: screening studies and disability surveys. 3). Specialized individual-level data collection, such as clinical diagnoses, to identify care or support needs or to evaluate treatment and intervention outcomes (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eConducting population-level studies is costly and often lacks state funding. This opens the potential for partnerships between healthcare institutions and universities to improve data collection, service delivery, and professional training in the disability sector through collaborative research initiatives (\u003cspan additionalcitationids=\"CR11 CR12 CR13\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e In this context, an inter-institutional agreement was signed between the Ministry of Public Health (MSP) and the University of Cuenca to implement a descriptive epidemiological research project with three main objectives: 1). To estimate the prevalence of developmental delay in children aged 2 to 59 months and the prevalence of motor impairment in children aged 5 to 12 years in Cuenca, Ecuador. 2). To clinically assess developmental delay and motor impairment in children diagnosed with Global developmental delay (GDD), Autism spectrum disorder (ASD), hearing loss, cerebral palsy (CP), and neuromuscular diseases such as Duchenne muscular dystrophy (DMD). 3). To determine whether these children were already receiving care in rehabilitation centres. The research was conducted in the catchment area of Health Centre No. 1, Pumapungo.\u003c/p\u003e\u003cp\u003eAccording to Ecuador\u0026rsquo;s Comprehensive Health Care Model (Modelo de Atenci\u0026oacute;n Integral en Salud, MAIS), primary healthcare units conduct extramural activities, including \u0026ldquo;active house-to-house searches,\u0026rdquo; to register and provide services to children with malnutrition, pregnant women, elderly individuals, and people with chronic diseases (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). However, the MSP does not currently implement any national programme for the early detection of developmental delays and/or disabilities in children (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e\u003cp\u003ePreviously, multidisciplinary neurodevelopmental teams, composed of students and academic staff from the Faculty of Medical Sciences specialising in speech therapy, physiotherapy, and early stimulation, were deployed to work in public health centres. However, the rehabilitation services that the university teams could offer were insufficient to meet the number of children with GDD and/or disabilities.\u003c/p\u003e\u003cp\u003eTo estimate the public resources required for comprehensive child disability care, it is essential to present epidemiological data to support the allocation of appropriate government funding. For this reason, the research project, \u0026ldquo;Prevalence of developmental delay and motor impairment in children aged 2 months to 12 years based on a door-to-door household survey\u0026rdquo; was launched.\u003c/p\u003e\u003cp\u003eAlthough the research was carefully designed and implemented, its objectives were not fully achieved because a substantial proportion of participants were lost to follow-up. Nevertheless, the research team considers this investigation highly valuable \u0026mdash; both for the children who had previously gone undiagnosed and for those who had been confined at home and unregistered for care, and for the medical students who gained exposure and experience working within communities. This study also demonstrates the potential of inter-institutional collaboration between ministries of health and universities for both research and service delivery. For these reasons, this methodological study (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) aims to identify the strengths of the research design, analyse the challenges encountered during implementation that led to case loss over the course of the study, and provide recommendations to inform future research in similar contexts.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eResearch Summary\u003c/strong\u003e\u003cp\u003e\"Prevalence of developmental delay and motor impairment in children aged 2 months to 12 years based on a door-to-door household survey\"\u003c/p\u003e\u003c/p\u003e\u003cp\u003eThis was a cross-sectional, descriptive epidemiological study based on door-to-door household surveys (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) conducted between September 2022 and March 2023, during the COVID-19 pandemic. The study received ethical approval from a human research ethics committee.\u003c/p\u003e\u003cp\u003eConvenience sampling was undertaken to identify children who were homebound, hidden, or otherwise excluded from official censuses, including undocumented migrant populations (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). To evaluate the representativeness of the study area (an urban sector of Cuenca) its Living Conditions Index (LCI) was compared with the citywide average. The LCI is a composite indicator developed by Daniel Orellana Vintimilla et. al (2017) that combines measures of housing quality, access to education, and access to healthcare. LCI values range from 0 to 1, and the study area had an LCI of 0.81; higher than the city\u0026rsquo;s mean LCI of 0.67 by 0.6 standard deviations (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e) (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe study area contained housing, public and private hospitals, clinics, commercial establishments, and 15 educational institutions. A distinguishing feature of this sector\u0026mdash;and Cuenca more broadly\u0026mdash;is the relocation of middle- and upper-income families from these city centre sectors to less densely populated suburban areas. The families who have departed often rent their former central residences to businesses or convert them into \u003cem\u003econventillos\u003c/em\u003e\u0026mdash;multi-family dwellings\u0026mdash;resulting in overcrowded conditions (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe research team conducted fieldwork across 134 city blocks, surveying 2,996 households and identifying 1,341 children aged between two months and twelve years (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe research project was structured in three stages, each incorporating recommended best practices for this type of investigation (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Stage one involved the identification of \u0026ldquo;suspected cases of developmental delay\u0026rdquo; and \u0026ldquo;suspected motor impairment\u0026rdquo;, carried out by two academic supervisors and 15 final-year undergraduate medical students undertaking their paediatrics rotation. For children aged 2 to 59 months, screening followed the 2017 guidelines of the Integrated Management of Childhood Illnesses (IMCI) (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). For those aged 5 to 12 years, two standardized screening questions were applied (\u003cspan additionalcitationids=\"CR28\" citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e): 1). \"Does the child show delays in movement compared with peers in any of the following: getting up from the floor, sitting, standing, walking, or running?\". 2). \"Does the child fall frequently?\". An affirmative response to either question classified the case as \u0026ldquo;suspected motor impairment\u0026rdquo;. These questions aimed to detect mobility disorders such as cerebral palsy, neuromuscular diseases (e.g., Duchenne muscular dystrophy) (\u003cspan additionalcitationids=\"CR31\" citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e), and other genetic or infectious etiologies (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eStage two consisted of diagnostic confirmation. Children aged 2 to 59 months with suspected developmental delay were assessed by early intervention professionals using the Battelle Developmental Inventory (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e) to confirm specific or global developmental delay (\u003cspan additionalcitationids=\"CR38\" citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). Children aged 5 to 12 years with suspected motor impairment underwent neurological assessment and were categorized as having upper motor neuron syndrome (UMNS), lower motor neuron dyndrome (LMNS), or an indeterminate condition. Stage three involved differential diagnosis by specialists in genetics, audiology, and paediatric neurology.\u003c/p\u003e\u003cp\u003eThe demographic data collected included age, sex, school attendance, and use of rehabilitation services. Informed consent was obtained from a parent or caregiver at each stage of the assessment. Following diagnosis, written summary reports were delivered directly to the child's primary caregiver.\u003c/p\u003e\u003cp\u003eThe first stage of screening lasted six months. Owing to financial constraints, stages two and three were conducted subsequently, as concurrent implementation would have significantly increased costs. These stages took place at an assessment centre established within the Faculty of Medical Sciences at the University of Cuenca, located 200\u0026ndash;500 metres from participants\u0026rsquo; homes. Appointments were scheduled with caregivers by telephone and could be rescheduled up to three times. The option of a home visit was offered. A child was classified as \u0026ldquo;lost to follow-up\u0026rdquo; if informed consent was not signed for subsequent stages, or if the child was not evaluated after three missed appointments and the caregiver was unavailable at home.\u003c/p\u003e\u003cp\u003eOf the 1,341 children identified in the study area, 703 (52.4%) were evaluated. Among them, 234 (33.29%) were aged 2 to 59 months, and 469 (66.71%) were aged 5 to 12 years. The sex distribution was balanced. Most children (76.7%) were enrolled in an educational institution.\u003c/p\u003e\u003cp\u003eIn stage one, 93 of the 234 children aged 2 to 59 months (40%) were classified as having suspected developmental delay, while four (2%) were lost to follow-up. In stages two and three the attrition rate exceeded 60%. Among those assessed, one case of epilepsy, three children with dysmorphic features (suggestive of genetic syndromes), and five with abnormal neurological findings were identified. No children presented with hearing loss.\u003c/p\u003e\u003cp\u003eAmong the 469 children aged 5 to 12 years, 22 (4.7%) were suspected of having motor impairment. The attrition rates of the various specialist evaluations in stages two and three ranged from 31\u0026ndash;60%. The diagnoses included three cases of UMNS, one with Dravet syndrome, and eight children with indeterminate neurological conditions. Six children presented with dysmorphic features. No hearing impairment was reported.\u003c/p\u003e\u003cp\u003eOwing to the high attrition rates in stages two and three, only the prevalence of suspected developmental delay and suspected motor impairment from stage 1 could be estimated. At 40% and 4.7% respectively, both values were high. None of the children with confirmed conditions were receiving rehabilitation services at the time of evaluation.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eA detailed research report was initially developed. This was followed by a qualitative, reflective analysis undertaken by the research team to inform the development of this paper. The objective was to evaluate the implementation of the study, focusing on identifying its strengths, challenges\u0026mdash;particularly those contributing to loss to follow-up\u0026mdash;and recommendations for future research in similar contexts (\u003cspan additionalcitationids=\"CR41 CR42\" citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e).\u003c/p\u003e"},{"header":"Results","content":"\u003ch3\u003eData collection\u003c/h3\u003e\n\u003ch4\u003eStrengths\u003c/h4\u003e\n\u003cp\u003eA map of the study area was developed, detailing the total number of commercial establishments, healthcare facilities, educational institutions, and residential dwellings (20). This mapping facilitated systematic, door-to-door visits during which the numberd of households, families, and children were recorded. Visits were scheduled according to the availability of the families. Where informed consent had been provided by the mother, multiple attempts were made to complete the child’s developmental assessment.\u003c/p\u003e\n\u003cp\u003eA total of 703 children between 2 months and 12 years of age were evaluated, allowing for the identification of suspected developmental delay and motor impairment, and offering the opportunity for subsequent confirmatory diagnostic assessment. Twelve children aged 5 to 12 years were identified as having motor disabilities and were not receiving healthcare or education at the time of evaluation. Children with suspected developmental delay or motor impairment were referred to a rehabilitation centre for further care.\u003c/p\u003e\n\u003ch4\u003eChallenges\u003c/h4\u003e\n\u003cp\u003eA total of 52.4% of parents signed the informed consent form. Stages two and three were initiated only after the completion of stage one, which lasted six months. This delay contributed to substantial loss to follow-up, as many families, predominantly migrants and informal workers, tended to vacate their rented dwellings within three to five months due to financial constraints. Consequently, it many cases it became impossible to conduct the second and third stages of assessment. Furthermore, despite multiple attempts to arrange and rearrange appointments, families often failed to attend the scheduled appointments for follow-up evaluations.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBecause a convenience sample was used (using an area familiar to the researchers from previous studies), the prevalence for the entire city could not be estimated.\u003c/p\u003e\n\u003cp\u003eAdverse housing conditions, heavy traffic, and environmental noise interfered with the implementation of the assessment protocols in the field.\u003c/p\u003e\n\u003cp\u003eThe considerable number of children to evaluate combined with having only two health professionals in the field meant that medical students often evaluated the children without the presence of a health professional for guidance.\u003c/p\u003e\n\u003cp\u003eDiagnostic testing was not available for children who presented with dysmorphic features and suspected chromosomal or monogenic syndromes. This limitation fell short of family expectations, and some families chose to withdraw from the study because of this, which made it impossible to estimate the prevalence of these specific conditions.\u0026nbsp;\u003c/p\u003e\n\u003ch4\u003eRecommendations\u003c/h4\u003e\n\u003cp\u003eBegin with a robust community dissemination strategy outlining the objectives, significance, and stakeholders of the research. This approach helps build trust and foster motivation among families. Publicise the assessment schedules in advance and ensure flexibility in adapting research timelines to accommodate the specific needs and constraints of the target population. Initial screening and follow-up evaluations should be implemented concurrently to reduce loss to follow-up.\u003c/p\u003e\n\u003cp\u003eIf the study objective is to estimate city-wide prevalence, several clusters should be selected probabilistically (e.g., 30 blocks with probability proportional to size) and households should be sampled within each cluster. However, if the aim is to identify the maximum number of children with disabilities who remain confined to the home and are excluded from formal services, the original convenience sampling approach should be maintained, as travel between survey locations is minimized, allowing researchers to visit more homes in the same period of time.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePrepare students and teachers to administer the diagnostic tools in the full range of field conditions they are expected to encounter and how to adjust for these.\u003c/p\u003e\n\u003cp\u003eIn addition to presurvey training, it would be valuable to employ enough health professionals so that they can accompany students during door-to-door screenings at regular intervals to provide support, guidance, and feedback.\u003c/p\u003e\n\u003ch3\u003eThe MSP and university agreement\u003c/h3\u003e\n\u003ch4\u003eStrengths\u003c/h4\u003e\n\u003cp\u003eThe implementation of the study was supported by an inter-institutional agreement, which facilitated collaboration between governmental and academic sectors. University teachers and students who engaged in data collection were provided with official Ministry of Health identification badges, which reinforced the initiative’s legitimacy and created trust with participating families. The research was integrated within an official programme of the Ecuadorian government, ensuring administrative support and alignment with national health and education priorities.\u003c/p\u003e\n\u003ch4\u003eChallenges\u003c/h4\u003e\n\u003cp\u003eInstitutional engagement from both the MSP and the university was limited after the initial agreement phase. The University of Cuenca did not provide facilities to carry out the evaluation, which hampered the study’s implementation. The researchers experienced numerous instances of “red tape”, both from the university and health ministry, while obtaining permissions to carry out the investigation’s activities.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe professionals at the health centres were occupied with their existing clinical work, which restricted their ability to accompany students during door-to-door visits, and no alteration in their schedules was made. This also meant that when children with disabilities were discovered, and referrals were made to the health centre, it was difficult for these new patients to be seen as the doctors already had full workloads.\u003c/p\u003e\n\u003ch4\u003eRecommendations\u003c/h4\u003e\n\u003cp\u003eIt is essential to clearly delineate the responsibilities of institutional stakeholders to streamline research processes and reduce procedural delays. Furthermore, community-based child health monitoring, and early identification of neurodevelopmental disorders and developmental delays, should be emphasized as strategic priorities within integrated service delivery models and medical academic curricula.\u003c/p\u003e\n\u003cp\u003eDuring the agreement stage, secure commitments from governmental health bodies that health professionals will maintain appointment slots open for the patients that will be discovered through the investigation program, to ensure the patients can begin treatment quickly after initial detection.\u003c/p\u003e\n\u003ch3\u003eThe research team\u003c/h3\u003e\n\u003ch4\u003eStrengths\u003c/h4\u003e\n\u003cp\u003eAcademic staff with expertise in child neurodevelopment and community-based healthcare guided students during field activities, fostering professional accountability. The survey area was designed to be geographically accessible for both students and faculty. The research coordinating team and academic supervisors addressed operational issues in a timely manner. Supervisors, students, and health professionals demonstrated expertise in the administration of diagnostic instruments across each of the study stages.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe tasks conducted were embedded within the students’ medical curriculum. The programme promoted the development of professional competencies in the students, such as building authentic relationships with families, recognising social determinants of child health, and engaging meaningfully with community-based institutions. Evaluators consistently adhered to ethical standards and employed developmentally appropriate, child-sensitive communication during interactions with children and caregivers.\u003c/p\u003e\n\u003ch4\u003eChallenges\u003c/h4\u003e\n\u003cp\u003eInitially, some students perceived the community-based component as having limited relevance to their clinical training. However, as the study progressed, most acknowledged the educational and professional value of the experience. A small number of students experienced emotional fatigue, a lack of empathy towards participants, or difficulty managing distress during fieldwork. In certain cases, this affected the confidence of families participating in the assessments. A few students expressed apprehension when entering households they perceived as potentially unsafe.\u0026nbsp;\u003c/p\u003e\n\u003ch4\u003eRecommendations\u003c/h4\u003e\n\u003cp\u003eAffective and psychological support should be made available to both students and academic staff engaged in community-based data collection. This would strengthen their skills in empathetic communication. It is also important to conduct prior risk assessments of the study area and to implement discreet, context-sensitive safeguarding measures to protect the wellbeing of both research personnel and participating families.\u003c/p\u003e\n\u003ch3\u003eThe children's families\u003c/h3\u003e\n\u003ch4\u003eStrengths\u003c/h4\u003e\n\u003cp\u003eThe empathy and trust established by the research team facilitated the participation of 52% of families in the screening and evaluation process. The child’s mother or primary caregiver received a written report detailing the results, which was personally delivered by a supervising academic. Children who were diagnosed and were not attending any childcare or health facility at the time of assessment were referred to appropriate services for therapeutic intervention.\u003c/p\u003e\n\u003ch4\u003eChallenges\u003c/h4\u003e\n\u003cp\u003eThe study area, characterized by an urban area with a mix of commercial and residential buildings, had a highly mobile population, with families frequently relocating every 3 to 5 months. This context made it difficult to identify community leaders to support research activities. For many families, securing an income through informal employment took precedence over remaining at home for evaluation appointments. Additionally, some families perceived the study as an initiative intended for institutional benefit rather than community welfare. Negative responses from caregivers—including denial, scepticism, and distress—in response to suspected developmental delays may have contributed to loss to follow-up.\u003c/p\u003e\n\u003cp\u003eFamilies of children identified with suspected developmental delay or suspected motor impairment expressed expectations that extended beyond diagnostic screening. Many inquired about referrals for rehabilitation, genetic testing, specialist consultations, and personalized treatment plans. However, as the research protocol did not include clinical interventions, several families experienced disappointment and subsequently declined to participate in further study phases. In cases requiring therapeutic services, referrals were issued to public rehabilitation centres. These centres, often situated at significant distances from the families’ homes and with limited opening hours, posed substantial barriers to access.\u003c/p\u003e\n\u003ch4\u003eRecommendations\u003c/h4\u003e\n\u003cp\u003eBefore carrying out the survey, undertake a sociocultural assessment to identify community leaders that could facilitate community engagement with research initiatives. Prepare an integrated referral and care system for children identified with neurodevelopmental difficulties, ensuring prompt access to diagnostic confirmation and early intervention services. Communication with caregivers should be empathetic, culturally sensitive, and comprehensive, providing not only diagnostic clarity but also guidance on available resources. It is essential to offer sustained emotional support to families navigating the implications of developmental disorders, acknowledging the psychological and social dimensions of these experiences.\u003c/p\u003e\n\u003cp\u003eIf the ministry of health is unable to guarantee dedicated treatment slots for new patients discovered through the door-to-door program, it may be possible to utilise health science students to provide regular, flexible, home visits to deliver treatment.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e We assessed a large number of children, determining the prevalence of those with a probability of disability, and finding children with disabilities who were homebound and not receiving any care. This in itself is seen as one success of the investigation.\u003c/p\u003e\u003cp\u003eWhile we discovered many children with undiagnosed disabilities and developmental delays, many children were lost to follow-up. Why were cases lost at stages 2 and 3? Primarily, the large time gap between the initial screening and the later stages meant that many families had moved away and could not be contacted. The delay was caused by financial constraints that required the team to first identify all cases of children with potential developmental delay before proceeding to hire professionals for stages 2 and 3. This approach ensured that the exact number of professionals needed were employed, avoiding unnecessary expenditures. Amin Bredan (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e), noted similar issues, describing in his editorial how financial constraints cause difficulties in achieving the objectives of a project and suggesting adjustments such as simplifying the objectives of the study, or collaborating with international partners with greater access to resources.\u003c/p\u003e\u003cp\u003eOther areas that impacted the study\u0026rsquo;s execution were the underdeveloped soft skills of the students (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e), the limited ongoing support of the institutions (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e), and the feelings of the children's families towards the study (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe weakness in the soft skills of the student-researchers, and their subsequent development during the study, corresponds with the research by Palakshappa \u0026ndash; 2022 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), Naali- 2021 (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) and Ampofo et al. 2024 (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e), Rimando et al. 2015 (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e), and Bittner and Kempchen- 2024 (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e) that highlight the benefits for medical students to participate in community-based education. The authors demonstrate how community-based work can be an integral component of medical students' training, enhancing students' understanding of the social determinants of health, increasing their willingness to work in rural areas, and strengthening their commitment to public health and social responsibility. In addition, the community-based work developed the students\u0026rsquo; autonomy and initiative, research skills, application of knowledge, interpersonal skills, confidence, and ability to deal with complex problems.\u003c/p\u003e\u003cp\u003eThe variable level of support we received from institutions contrasts with the successful experience of inter-institutional cooperation in a case study by Cech and Alvarado (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e) of work also done in Ecuador. Their research presents a positive model of community-based rehabilitation, achieved through a strong partnership between the non-governmental organization \u0026lsquo;Causes for Change International\u0026rsquo; (CCI), the local government, several universities, and the state health service. This partnership demonstrated the ability to gather essential information on community needs, develop services for and with the community, and to effectively evaluate the effectiveness of its interventions. Through implementing their programmes over many years, the NGO gained the trust of communities and local governments, empowered local groups, and developed the leadership skills of local people. A specific example of collaboration within this project was the involvement of health science students from the University of Milagro and Dominican University in a school for children with disabilities, applying their education in areas such as social work, physiotherapy, and occupational therapy.\u003c/p\u003e\u003cp\u003eTwo key differences surface between the work of CCI and our own study that explain the success they had in contrast to the difficulties we faced. Above all was the length of time that CCI work with their communities. Our study had a data collection period of 6 months, with discussions with the ministry of health happening for a period of two months beforehand. While, by the time of writing the case study, CCI had worked in some communities for 20 years. A second factor, albeit linked, was the repeated lack of treatment offered to our study participants for the diagnoses given in door-to-door health surveys over time, with our study being merely the latest of these. This contributed significantly to the high rates of refusal to participate and loss to follow-up. In contrast, CCI existed to provide treatments. The continued provision of medical, dental and audiology services, wheelchairs, crutches, and hearing aids, amongst other interventions, would have developed strong trust in the organization to provide further benefits to the communities in the future and increase community willingness to participate.\u003c/p\u003e\u003cp\u003eDespite not improving the relationship between the university and the Ministry of Health directly from this project, from the example of CCI, we have confidence that continued collaborations over a larger time span will lead to a strengthening of the partnership.\u003c/p\u003e\u003cp\u003eWhile a rigorous selection of screening tools was carried out, researchers were trained to evaluate subjects thoroughly, and the data was meticulously reviewed for any errors, the affection, perception, fears, and trust of the families were not addressed. The diagnosis of disability does not only depend on the use of validated tools but also on providing the empathy and support families require during the process. Mfutso-Bengo et al., 2008 (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e) reported that among the reasons for people refusing to participate in health research were: lack of benefits from the study, vague informed consent procedures, fear of strangers, previous negative experiences of research, and the researchers\u0026rsquo; lack of cultural sensitivity.\u003c/p\u003e\u003cp\u003e During the initial door-to-door screening, we estimate that previous negative experiences of research impacted the high refusal rate of parents to enter into the study initially. Then, during the study itself, we encountered many cases where the lack of benefits offered (of treatment after diagnosis) deterred families from continuing through the process, and some issues with unclear informed consent, where parents believed treatment would be provided, and so were left disappointed and withdrew midway through the study. Dwarakanathan et al.\u0026rsquo;s 2018 commentary article about the challenges when conducting community-based research (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) highlights the same reasons for refusal; previous negative experiences, lack of perceived benefits, and poor informed consent procedures, amongst others. Mfutso-Bengo et al. recommended ensuring a robust and understandable informed consent process, building long-term trusting and credible relationships with the community, having strong interpersonal skills, having transparency about compensation and support, and obtaining collaboration with community leaders and local authorities.\u003c/p\u003e\u003cp\u003eResearch by Pearson et al, 2020 (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e) reports that parents feel frustrated when diagnoses do not translate into tangible improvements in their children's quality of life, and when researchers collect data promising to introduce public policies and projects but then do not return and nothing changes in the community. Heslon et al, 2024 (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e) highlights the need for a systematic, comprehensive, and standardized approach to care services for children with neurodevelopmental disorders and their families. The delay in offering second and third stage evaluations to the children identified with \"suspected developmental delay\" in our study caused families to return to their position of disbelief and not respond to the call for stages 2 and 3.\u003c/p\u003e\u003cp\u003eThis leads to an interesting consideration when carrying out medical research in developing countries. In developed countries, where the access to medical attention is better, the discovery of an illness or disability through a research project provides high value to the study participant (or parent of), encouraging initial participation and continued engagement. Where there is a lack of access to treatments, any discovery of illnesses or disabilities may not benefit the participant, and therefore there is little incentive to participate. As experienced in our research, when this lack of treatment access has occurred several times\u0026mdash;different researchers entering communities, collecting data, then leaving\u0026mdash;populations can become disillusioned, impacting the research projects that follow. It is therefore a recommendation from this study that, where treatment for the health condition being investigated would be difficult to obtain elsewhere, the research project should have funding allocated for treatment within the study programme. When this is provided, participation rates should be high, and the willingness to participate in future medical research should also be bolstered.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThis methodological study illustrates both the promise and the complexity of implementing door-to-door screening for identifying developmental delay and motor impairment among children in underserved urban settings in a developing country. Despite its limitations, the project achieved one of its most critical goals: the identification of children with previously undiagnosed disabilities who were not receiving any form of intervention. This confirms that many children with neurodevelopmental disorders remain hidden from the healthcare and education systems in Ecuador.\u003c/p\u003e\u003cp\u003eKey findings highlight that while screening at scale is feasible through academic\u0026ndash;health system partnerships, substantial loss to follow-up during diagnostic and referral stages undermines the ability to collect comprehensive epidemiological data. This was primarily due to delays between stages, high population mobility, and the absence of guaranteed access to treatment services\u0026mdash;factors that are especially pronounced in contexts of socioeconomic vulnerability.\u003c/p\u003e\u003cp\u003eThe study underlines several strategic recommendations for future implementation: concurrent evaluation stages to minimise attrition, clear institutional responsibilities, integration of treatment or referral pathways into the research protocol, and proactive community engagement with attention to psychosocial barriers such as denial, mistrust, and previous negative experiences with healthcare or research.\u003c/p\u003e\u003cp\u003eThe participation of medical students in this research not only helped gather essential data but also demonstrated the transformative value of community-based education in shaping empathetic, socially engaged health professionals. However, the students\u0026rsquo; learning journey also highlighted the need for more robust preparation and emotional support in such settings.\u003c/p\u003e\u003cp\u003eUltimately, this study reaffirms the necessity for sustained, well-resourced, and trust-based collaborations between universities, health ministries, and communities. For early identification efforts to be effective and ethical in low-resource settings, they must be coupled with timely access to services and a genuine commitment to improving the lives of children with disabilities\u0026mdash;not merely documenting their existence.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eASD: Autism spectrum disorder\u003c/p\u003e\n\u003cp\u003eCP: Cerebral palsy\u003c/p\u003e\n\u003cp\u003eDMD: Duchenne muscular dystrophy\u003c/p\u003e\n\u003cp\u003eGDD: Global developmental delay\u003c/p\u003e\n\u003cp\u003eIMCI: Integrated Management of Childhood Illness\u003c/p\u003e\n\u003cp\u003eINEC: National Institute of Statistics and Census (Ecuador)\u003c/p\u003e\n\u003cp\u003eLCI: Living Conditions Index\u003c/p\u003e\n\u003cp\u003eLMNS: Lower motor neuron syndrome\u003c/p\u003e\n\u003cp\u003eMAIS: Modelo de Atenci\u0026oacute;n Integral en Salud (Comprehensive Health Care Model)\u003c/p\u003e\n\u003cp\u003eMSP: Ministry of Public Health (Ecuador)\u003c/p\u003e\n\u003cp\u003ePWDs: Persons with Disabilities\u003c/p\u003e\n\u003cp\u003eSDGs: Sustainable development goals\u003c/p\u003e\n\u003cp\u003eUMNS: Upper motor neuron syndrome\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch3\u003eEthics approval and consent to participate\u003c/h3\u003e\n\u003cp\u003eThe research project was approved by the Human Research Ethics Committee of the Catholic University of Cuenca under code CEISH-UCACUE-081. The inter-institutional collaboration between the Ministry of Public Health and the University of Cuenca was formalized in an agreement signed by both parties. The research was conducted in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from the parents or legal guardians of all participants.\u003c/p\u003e\n\u003ch3\u003eClinical trial number\u003c/h3\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003ch3\u003eConsent for publication\u003c/h3\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003ch3\u003eAvailability of data and materials\u003c/h3\u003e\n\u003cp\u003eThe dataset supporting the conclusions of this article is available in the CEDIA Dataverse repository, https://doi.org/10.48661/PIUR7N [20].\u003c/p\u003e\n\u003ch3\u003eCompeting interests\u003c/h3\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003ch3\u003eFunding\u003c/h3\u003e\n\u003cp\u003eThis work was funded PTC Therapeutics S.A. and Fundaci\u0026oacute;n Huiracocha Tutiv\u0026eacute;n.\u003c/p\u003e\n\u003ch3\u003eAuthors\u0026apos; contributions\u003c/h3\u003e\n\u003cp\u003eMLHT designed and conducted the research, coordinated the data collection, analyzed and interpreted the data, and drafted the manuscript. GN was responsible for data recording and quality assurance, data analysis and interpretation, and co-wrote the manuscript. JT, DV, MMB, MMD, and XB contributed substantially to data collection and fieldwork implementation. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003ch3\u003eAcknowledgements\u003c/h3\u003e\n\u003cp\u003eWe would like to thank the health and education professionals who contributed to the data collection process, the students who participated in gathering the information, and the parents and their children whose trust made this research possible.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eGlobal report on health equity for persons with disabilities [Internet]. Geneva: World Health Organization; 2022 [cited 2024 Aug 16]. Available from: https://reliefweb.int/report/world/global-report-health-equity-persons-disabilities-enarruzh\u003c/li\u003e\n\u003cli\u003eJimenez AS, Quinto NMM, Yambo MLC, Mendez KV. 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Parental perspective: Factors that played a role in facilitating or impeding the parents\u0026rsquo; understanding of their child\u0026rsquo;s developmental diagnostic assessment. Child Care Health Dev. 2020;46(3):320-6; doi: 10.1111/cch.12751.\u003c/li\u003e\n\u003cli\u003eHeslon K, Hanson JH, Ogourtsova T. Mental health in children with disabilities and their families: red flags, services\u0026rsquo; impact, facilitators, barriers, and proposed solutions. Front Rehabil Sci. 2024;5:1347412; doi: 10.3389/fresc.2024.1347412.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Table","content":"\u003cp\u003e\u003cstrong\u003eTable 1. Challenges and recommendations from the door-to-door survey in Cuenca, Ecuador\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" class=\"fr-table-selection-hover\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eChallenges\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRecommendations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eData collection\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eNot all families signed the consent form for the evaluation.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eStrengthen public trust in the research initiative beforehand to enhance participation and reduce loss to follow-up.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eEvaluation environment was not ideal due to housing conditions and noise.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003ePrepare teachers and students to apply assessment tools effectively in resource-limited or difficult field conditions.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eParents and their children didn\u0026rsquo;t attend follow-up evaluation appointments of stages two and three because of the large gap between their stage one evaluation and the start of stages two and three.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eImplement stages concurrently, as staggered execution contributed to reduced attendance at follow-up evaluations\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eMedical students often evaluated the children without the presence of health professionals.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eEnsure enough professionals are employed so that they can accompany students during door-to-door screenings at regular intervals to provide advice and feedback.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMSP and University Agreement\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eLimited engagement from the Ministry of Public Health and the University\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eDuring the agreement stage, clearly define responsibilities of the institutional authorities \u0026ndash; any provision of staff, facilities, etc.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eHealth centre professionals were unable to accompany the students in the field as agreed due to their ongoing workloads at the health centres\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eExplore the possibility of utilising medical and nursing students to assume some of the workload of the health centre staff (for example, recording medical histories) to create time for the professionals to support the students in the field work.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eHealth centre doctors were unable to attend to the additional patients detected through the investigation program.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eDuring the agreement stage, secure agreement that the doctors at the health centres will maintain appointment slots open for patients that are discovered through the investigation program.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eResearch team\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eStudents had doubts of their competence in evaluating patients\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eAssign experienced professionals to mentor and shadow students during their initial door-to-door visits, helping to build their confidence and provide real-time guidance and reassurance.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eSome students were afraid of working in the area and of entering the buildings to perform the evaluations, which lead to decreased empathy with families\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003ePair students with seasoned healthcare workers during the first few door-to-door visits to help them navigate the environment safely and ease their anxiety.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eChildren\u0026apos;s families\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eDifficulty in finding a community leader to animate participation in a population that moves to new accommodation every 3 to 5 months.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eDedicate time before the commencement of the evaluations to identify and link with community leaders.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eParents prioritized work over making time for their children\u0026apos;s evaluations\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eEnsure that the professional team can accommodate the working schedules of the parents\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eEncourage the parents to take time off from work to bring their children for evaluations\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eLack of belief of some families in the benefits of the research.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eExplain the benefits of obtaining early diagnosis for the development of their child\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003ePresent to the parents an example of the report they will receive at the end of the project and explain how it can be used to obtain further treatment\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eFeelings of denial by some parents to accept their child\u0026apos;s diagnosis.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eEmploy a psychologist on the team to provide psychological support to families with children who are diagnosed with a disability.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eHigher family expectations of treatment than the research could offer them.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eSet clear expectations with families about the research scope and its treatment limitations\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eThe centres their children had been referred to during previous government programs were often too far away, with inconvenient opening hours, leading some parents to feel unmotivated to go through another evaluation process, given their low expectation of receiving treatment.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 463px;\"\u003e\n \u003cul\u003e\n \u003cli\u003eExplore the possibility of utilising health science students to provide regular, flexible-hours, home visits to deliver treatment.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-research-methodology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmrm","sideBox":"Learn more about [BMC Medical Research Methodology](http://bmcmedresmethodol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmrm/default.aspx","title":"BMC Medical Research Methodology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Developmental delay, Motor impairment. Community-based screening, Door-to-door surveys, Childhood disability, Neurodevelopment, Epidemiological methods, Health equity, Ecuador, Medical education","lastPublishedDoi":"10.21203/rs.3.rs-7473183/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7473183/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eChildren with neurodevelopmental disorders in low-resource urban settings often remain undiagnosed and excluded from care. Reliable epidemiological data is crucial for addressing this issue, but in Ecuador, official data are limited, and fragmented health and education systems hinder effective early identification. To address this issue, an epidemiological door-to-door household survey was carried out in Cuenca, Ecuador. This paper presents a methodological review, reflecting on the challenges and lessons learned when implementing epidemiological research in a socially and economically vulnerable population.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eThe original study was a cross-sectional, descriptive survey conducted between September 2022 and March 2023 across 134 city blocks. Although designed to estimate the prevalence of developmental delay (ages 2\u0026ndash;59 months) and motor impairment (ages 5\u0026ndash;12 years), high attrition prevented valid prevalence estimates. The research team undertook a structured reflective analysis of the study process, to identify the causes of the high degree of participant loss to follow-up and to assess the strengths and weaknesses of the study\u0026rsquo;s methodology.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eThe analysis revealed a critical weakness in the original study's design. A six-month delay between the initial screening (stage 1) and subsequent diagnostic assessments (stages 2 and 3) combined with the high mobility of the study population, was a primary driver of the 31\u0026ndash;60% attrition between stages. Other significant challenges included: a lack of treatment pathways for participants, limited institutional support post-agreement, and the initially undeveloped soft skills of the student researchers. Strengths included reaching many unregistered children with disabilities, effective household mapping, strong inter-institutional collaboration to initiate the project, and valuable experiential learning for medical students. Recommendations arising from the review highlight the need for concurrent implementation of study stages, stronger preparatory community engagement, provision of treatment within the study protocol, and clear definition of institutional responsibilities.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eThis study underscores the importance of aligning methodological design with sociocultural realities. Future projects should develop community trust, secure robust institutional commitments, and integrate clear treatment into the research protocol to ensure participant retention and provide tangible community benefits. In addition to informing future research design, these findings illustrate how community-based projects can also serve as beneficial training experiences for health professionals.\u003c/p\u003e","manuscriptTitle":"Experiences from a door-to-door screening programme for developmental delay and motor impairment in Cuenca, Ecuador: A methodological study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-09 15:27:10","doi":"10.21203/rs.3.rs-7473183/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-10-23T12:26:03+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-22T13:58:33+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-15T23:36:37+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"87362373495203535631834567420831270991","date":"2025-10-01T13:07:14+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"120418488986598535452251678479149107165","date":"2025-10-01T11:07:12+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-25T06:53:55+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-09-09T15:48:25+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-06T13:44:06+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-06T13:43:54+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Research Methodology","date":"2025-08-27T15:32:07+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-research-methodology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmrm","sideBox":"Learn more about [BMC Medical Research Methodology](http://bmcmedresmethodol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmrm/default.aspx","title":"BMC Medical Research Methodology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"36210812-d838-40d9-b3b3-62873c0c2a56","owner":[],"postedDate":"September 9th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-04-20T16:05:55+00:00","versionOfRecord":{"articleIdentity":"rs-7473183","link":"https://doi.org/10.1186/s12874-026-02837-w","journal":{"identity":"bmc-medical-research-methodology","isVorOnly":false,"title":"BMC Medical Research Methodology"},"publishedOn":"2026-04-15 15:58:54","publishedOnDateReadable":"April 15th, 2026"},"versionCreatedAt":"2025-09-09 15:27:10","video":"","vorDoi":"10.1186/s12874-026-02837-w","vorDoiUrl":"https://doi.org/10.1186/s12874-026-02837-w","workflowStages":[]},"version":"v1","identity":"rs-7473183","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7473183","identity":"rs-7473183","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}