A Journey Undertaken by Families to Access General Surgical Care for their Children at Muhimbili National Hospital, Tanzania; Prospective Observational Cohort Study

A total of 154 children with a median age at admission of 36 (IQR: 18 – 56) months participated in this study. The majority were from Coastal zone (n = 109/154, 71.2%) (Fig. 1) and male (n = 99/154, 64.3%) (Table 1). Appendix S1 details the regions-as per political divisions—the children resided in [18]. Most participants (n = 120/154, 77.9%) were referred from another health facility. Of these, 63.3% (n = 76/120) were from regional hospitals, with lack of paediatric surgery expertise being the main reason for referral (n = 106/120, 88.3%) (Fig. 1). 141 patients (92.2%) underwent elective surgery; (Fig. 2) anorectal malformation being the most common diagnosis (38/154, 24.7%). Most children had only 2 adults in their immediate family (n = 110/154, 71.4%).

Participants took a median time of 3 days (IQR: 1 – 14) to seek care from their first symptom; this varied by the zone of the patient (Fig. 3 and Appendix S2). From deciding to seek care, it took participants 1.5 h (0.5 – 3) and 4.08 h (IQR: 2 – 10) on average to reach a referring health facility and MNH for care, respectively. Only 31.1% (46/148) of participants were able to reach MNH-compared to 68.4% (80/117) who reached a referring health facility-within 2 h of deciding to seek care (Appendix S3). Travel to a referring health facility could involve rough roads and/or tarmac roads. 13 patients had to travel on rough roads, where they spent a median time of 2 h (IQR: 1.5 – 2). The medial time spent on tarmac roads was 1 h (IQR: 0.5 – 3).

A significant regression equation was found (F (2, 113) = 94.96, p < 0.0001), with an R2 of 0.627. The predicted time (hours) taken is equal to 1.061 + 0.003 (distance in km of their home from MNH) + 0.018 (distance of their referring health facility from MNH). Time taken to present to MNH increased by 0.003 h for each km their home was from MNH (p = 0.070) and 0.018 h for each km their referring health facility was from MNH (p < 0.001). The time taken from first symptom of current diagnosis to seeking care was significantly greater in those who self-referred (median: 7 days; IQR: 2 – 30) compared to those referred through a health facility (median: 2 days; IQR: 1 – 14) (p = 0.0186). A significant difference was also noted in the time to seeking care between different caregivers’ age groups (p = 0.0112) (Fig. 4 and Appendix S4). The time taken to reaching care at a referring health facility was significantly greater in those who did not travel by a motorcycle (median: 1.5 h; IQR: 0.75 – 3) compared to those who did (median: 0.5 h; IQR: 0.5 – 1.25) (p = 0.0048) and in those who used public transport (median: 2 h; IQR: 1 – 3) compared to those who did not (median: 1 h; IQR: 0.5 – 2) (p = 0.0004) (Fig. 5 and Appendix S4). The time taken to reach care at MNH was significantly greater in those who used public transport (median: 5 h; IQR: 2 – 11.5) compared to those who did not (median: 3 h; IQR: 1.5 – 5) (p = 0.0280) (Fig. 5 and Appendix S4). Appendix S5 and S6 show the original location of patients who were able to present to MNH within 2 h of deciding to seek care and the factors affecting time taken to access care.

The majority of participants were referred to MNH for elective surgery (n = 141/153, 92.2%) and had a pre-operative ASA score of 1 (n = 137/153, 89.5%). The incidence of post–operative SSI was 10.2% (15/147) (Table 2). The time taken from first symptom of current diagnosis to seeking care from a healthcare provider was significantly shorter in those who had emergency surgery (p = 0.0198) (elective surgery – median: 3 (IQR: 1 – 14) days; emergency surgery – median: 1 (IQR: 1 – 4) day. There was no significant difference in the time taken to reach care at a referring health facility between those who had emergency surgery and elective surgery (p = 0.4361) (elective surgery – median: 1.5, IQR: 0.5—3 h; emergency surgery – median: 1.25, IQR: 0.5 – 2 h). The time taken to present at MNH was significantly shorter in those who had emergency surgery (p = 0.0396) (elective surgery – median: 4.25, IQR: 2 – 11 h; emergency surgery – median: 2.75, IQR: 1 – 5 h). The median time from admission to receiving surgical care was 3 (IQR: 1 – 14) days; all emergency surgery was conducted within a day.

There was a significant difference in post-operative complications in those who underwent elective surgery compared to emergency surgery (p = 0.002). A greater proportion of children had mild (elective: n = 6/141, 4.3%; emergency: n = 1/12, 8.3%) and moderate (elective: n = 2/141, 1.4%; emergency: n = 2/12, 16.7%) post-operative complications in the emergency surgery sub-group. Individuals were significantly more likely to have a post-operative surgical site infection (SSI) if they underwent emergency surgery (p = 0.022) (Table 2).

Most participants had insurance (n = 116/154, 75.32%). Children were significantly more likely to have insurance if they were undergoing elective surgery (n = 111/141, 78.7%) over emergency surgery (n = 4/12, 33.3%) (p = 0.002). The median total out of pocket expenditure for receiving care at both referring health facility and MNH was $69.00 (Table 3). This was significantly greater among those referred through another health facility compared to those who self-referred to MNH (p = 0.0135). There was weak evidence that out-of-pocket expenditure was greater in those who did not have insurance (p = 0.0755) (insurance – median: $60.37, IQR: $17.90– $155.24; no insurance – median: $97.02, (IQR: $40.97– $232.86). Table 4 shows the relationship between self-reported socio-economic status and the various factors identified above to be significantly related to timely surgical access.

Patients travel long distances, navigate a complicated referral system, and incur significant costs in seeking and receiving paediatric surgical care. More than two-thirds of children saw a healthcare provider at a referring health facility within 2 h, but approximately a third of all children reached a tertiary hospital (MNH) within 2 h of deciding to seek care. This is still in stark contrast to other low-resource settings, where approximately four-fifths of the population are unable to access surgical care within 2 h [19]. For those who required emergency procedures, 50% reached MNH within 2 h of deciding to seek care and were more likely to have post-operative complications.

Lack of paediatric surgery expertise was the main reason that 77.9% patients were referred from other healthcare facilities. This is a reversal of the 2008 findings that self-referrals accounted for 72.5% of presentations at MNH for both surgical and non-surgical conditions [20]. Self-referral is thought to be associated with later presentation when the disease is more severe and worse prognosis. In our study, self-referring was associated with an increased time to seeking care. Similar findings have been reported in previous studies: a study in Uganda reported although 90% of participants were identified by family members to be suffering from an illness, only 14% sought medical attention immediately [21].

Existing benchmarks define paediatric surgical procedures that can be provided at various levels of healthcare based on resources, and these guide effective referral [22]. Based on these benchmarks, the majority of the referrals in our study needed tertiary level care. However, about 20.8% (32/154) of children had conditions (hernias, appendicitis and lipoma) which could have been treated at lower-level hospitals. Increased burden of managing these cases in tertiary hospitals may limit surgical care provision for both complex and common conditions [23]. If adequate resources are available, regional hospitals become the cornerstone of LMICs surgical care [23‐25].

In addition to infrastructure developments, training by local and international providers need to be prioritized [26]. This can be achieved by training multidisciplinary teams of children surgical providers [27] as well as including task-shifting and sharing [28, 29]. Defining regional hospitals as centres for providing paediatric surgery and incorporating telemedicine may leapfrog physical barriers and surgical specialist shortages. This will ensure timely access to surgical care, reduce the number of preventable referrals and overcrowding at higher-level hospitals [30]. Unit costs and the relative shares of capital costs are generally lower at primary-level hospital [31]. Effective treatment depends on all steps of a healthcare system working harmoniously, from timely seeking and reaching healthcare, appropriate triage for surgery or referral, to proper transportation for care in an adequately resourced facility for better outcomes [32]. The modern concepts of improving value in healthcare emphasize the importance of considering value across the whole patient pathway from symptoms to care and rehabilitation [33]. It was shown that surgical outcomes will remain poor in Africa unless perioperative care is improved [24]. This include the pathway to care, which is a critical and the most challenging period that may determine treatment outcomes.

Although there was a higher overall health insurance coverage (75%), those who were undergoing emergency surgery had 33.3%, which is comparable to findings of another study done on surgical patients in Northern Tanzania (45.5%) and to Tanzania’s general population (32% in 2019) [34, 35]. Patients are likely to have received their health insurance after being planned for elective surgery. This may explain the considerable out of pocket expenses among our study participants, related to both medical and non-medical expenses, and weak evidence that having health insurance protected patients from significant out of pocket expenditures. It was higher in those who were referred through another health facility. About 76.8% of Tanzanian are living below the poverty line ($3.20 per day) [36]: 65.8% and 85.5% are estimated to be at risk of catastrophic and impoverishing expenditures from seeking surgical care, well above the target of 0% by 2030 [3, 25]. It is important that paediatric surgical care is also financially accessible [37]. A median out-of-pocket expenditure of $69 for receiving surgical care in this study was considerably higher than the cost incurred for paediatric inpatient care in district hospitals in Kenya ($14.1) and Tanzania ($5.5) [37, 38]. The consequences of out-of-pocket expenditure are pushing individuals and households into poverty, most of these are in rural settings of Tanzania and other LMICs. In these settings, $69 can equate to a month’s salary for many, forming a barrier to individuals seeking care [39, 40]. An argument for deductibles and co-payments is to reduce the moral hazard of patients, but it is highly unlikely that children are considering the cost of their care when they are asking for it [41, 42]. Therefore, one method of reducing the cost burden on caregivers would be a policy of free inpatient care for all children. However, a large proportion of costs in hospitals in Tanzania is related to food [38]. MNH has a policy of free provision of food for children coming from far. Activity-based costing may be adopted and utilised in Tanzania and similar settings to reduce costs of hospital food and other direct nonmedical costs [43].

A limitation of this study is that it is based on patients who presented to MNH; we are unable to ascertain the treatment pathways for those who did not get to MNH. Future studies should consider understanding pathways to the regional hospitals. Furthermore, future studies should use qualitative methods to explore patient experiences in seeking and receiving surgical care.