Context of care.

Participants described similar challenges but different capacities to manage them. Differences in neurotrauma provision created disparity in access from centralisation of specialist facilities which necessitated lengthy travel for those in more rural areas. High disease burden created huge demand, and concerns were raised that they did not have enough time. International comparisons were often drawn and neurotrauma in LMICs was perceived as worse, with a higher incidence per capita, and a wider spectrum of disease pathologies, than HICs.

“[…] there is a lot of patients. And there are too many things you need to give to each patient, to give attention, but you can’t. You can’t. Exactly you can’t. Because in one day outpatient follow up is 120, 150 patients. So it is very difficult to give each patient sufficient time. So you just look at the- if the patient was discharged for a short time, since a few weeks, you look at the wound, you remove the sutures, and you check if there is any problem with the medication” [G]

“Just one CT scanner for, for the city, for one city. For city or for maybe I don’t know two or three million inhabitants. So it is very difficult here.” [M]

“In my State we have neurosurgery services in the main city, the capital. In one, just one more city that, that is 250 kilometres from here. So from the place, from a city in the south of the state to the city we have 5,000 kilometres with no neurosurgical service” [J]

Despite these contextual challenges, many ‘pockets of excellence’ were also reported that were considered on par with, or exceeding, those in HICs.

“Now some of those states, […] they have an incredible programme of rehab. And the kind of rehab that would dwarf the rehab programmes that I’ve seen in the UK and the US. Because they have clearly been driving it for a long time. […] So, there are these little pockets of excellence. But the spectrum of course is a very wide one. And it’s a graded spectrum. So, you will see everything from absolutely no follow-up at all, where it’s all about survival, to situations where the follow-up and the rehab services is so good it’s on par with the best that one could see in the developed world circumstances. And then everything in between” [O]

Patient pathway.

Key milestones were described within the patient pathway and patients were understood to have numerous ongoing physical, psychological, and cognitive sequelae that warranted further investigation. However, there were obstacles in providing care, such as a sparsity and centralisation of both specialist and rehabilitative services, inequitable access to services, weak organisation of existing infrastructure, and reduced clinician availability owing to case volumes. A stark contrast was made between paediatric and adult services, whereby adult care was considered sporadic and less comprehensive.

“There’s a secondary injury that we try to prevent. There’s also the same secondary injury that leads to chronic morbidity. But of course, you can’t run a severe TBI programme without incurring morbidity in survivors. So that’s a given. And most surgical departments are very focused on the acute care, but less so focused on the chronic care. But of course, we know because of the morbidity that’s as important as the acute care. So, patients are always going to have need of occupational therapy, physiotherapy, speech therapy, neuropsychological, neuropsychiatric support.” [O]

“It differs as the injured brain is quite heterogeneous even with same severity, different patient demography and genetics, etc.” [C]

“the patient and follow-up requires multi-speciality. Not only neurosurgery, he requires physiotherapy some of the eye problems they thought he might be requiring a visit to a ophthalmology centre. Or some ear problem so he might be requiring a visit to an ENT specialist […]it’s not feasible in a day […] this is one of the most important difficulties which we face” [P]

“We should not consider traumatic brain injury as an event but as a disease process.” [H]

“The [adult] follow up is a lot more sporadic. So, they will get- they are not followed up in the long run in the neurosurgical outpatients like we do in children. But patients with particular problems will be referred to various specialties. So, whether that be rehab services like occupational therapy, physiotherapy, or neuropsychiatric, or neuropsychological follow up. So, those clinics also exist. But those clinics are generally in adult services quite overwhelmed. So, it’s only really patients who have major, major issues. But the follow up isn’t as comprehensive in adult services at all.” [O]

Healthcare economics.

Financial burden of TBI was described both in terms of direct care costs and lost employment. Despite efforts to provide charitable and state-funded care, economic inequality remained. Where private practices and health insurance schemes existed, these were often out of reach for patients. Demand for care from new and returning patients also burdened healthcare resources. Lack of clinicians, imaging, clinics, and beds were described as causes of reduced capacity that could pose hard limits on treatment beyond acute care. A ‘survival-first’ model of care was described by many, with in-depth examinations and investigations considered a ‘luxury’.

“The state hospitals, like I told you, have such huge numbers that they couldn’t even begin to think of follow-up. They treat and they send. […] [here] they have this huge number of patients who come in. They do very good work. But the moment they finish the surgery, place you on a ventilator, they send the patient away into the hospital they came from. […] So, they have no idea what happens after that. They do the immediate acute care. And then they run” [F].

“The most important reason in the finance is the cost. […] The cost is the most important thing. Lack of health insurance and the patient has to pay from his own pocket.” [E]

“I ask them, why didn’t you come earlier? [They said] ‘I don’t have money to come here.’” [G]

“Clinicians or service providers end up focusing on the bare minimum. So, it ends up being all about survival.” [O]

Stark ratios between neurosurgeons and the population were described and this overburdening wore down morale and exacerbated gaps in provision.

“And then because they are overburdened in terms of their work rate it’s easy for them to get into this vicious spiral of caring less and less […] it’s just the constant burden of disease that kind of wears them down. So, fatigue sets in. Cynicism sets in. All of that. And so, you already have reduced resources and you burn out the people who are then trying to provide those resources even more. […] Fewer people providing the services so they get dumped on and have reduced capacity, psychologically, emotionally, physically, financially.” [O]

The importance of both intra- and inter-hospital coordination, and shared responsibilities in multi-disciplinary follow-up, was highlighted.

Durations and intervals.

Several definitions of ‘long-term’ were identified, varying from the point of discharge to at least one, three- and six-months post-discharge, to time spans of six to 12 months, one year, two years, five years and lifelong. However, the most frequently reported definition was six to 12 months in adult populations.

“I think once we’ve discharged the patient from our hospital, okay, long-term can be anything just from a first follow-up to the last follow-up. […] long-term can be at least for three months. […]can be three months to any number of years. The longer it is the better it is. […] The long-term is definitely needed, the longer it is the better you know about the disease.” [P]

“So, I think unfortunately not still many people in the community of the neuro trauma care have the real concept of long-term outcomes, many people just think there is just at the end of the hospitalisation plan discharge or sometimes just one and between six months after discharge.” [I]

In contrast, long-term in a paediatric setting was described as at least four to five years and was explained as necessary to mitigate the possibility of mis-assessment of the child’s level of functioning, and to distinguish between cognitive or behavioural sequelae versus usual childhood behaviour. With respect to the intervals between outpatient appointments following discharge, there were clear similarities between settings, and often offered at one-, three- and six-month intervals, followed by annual visits.

Capacity and practice.

Despite some similarity in the timing of follow-up, many also described follow-up as ‘needs-driven’, with complex cases necessitating more tailored and extensive review. Needs-driven follow-up was also in response to the demand for care and a necessity for prompt discharge.

“Um, I think it varies between places […] I think it depends on the setup and in the patient load of the hospitals and so on […] we have clinics with many patients so if they are having like no new complaints and so on we tend to like reassure them and discharge them after six months but yeah I think it is built on the based on the settings that we have in developed countries yeah.” [A]

Many participants expressed a desire to follow-up patients in a way that would more closely reflect their theoretical understanding of long-term follow-up, but were constrained in their ability to achieve this.

Patient.

Patients were regarded almost ubiquitously as the primary beneficiary of follow-up. The heterogenous sequelae of TBI, and varying needs post-injury were acknowledged. Multiple longitudinal assessments were believed to be advantageous, providing the best chances of recovery.

“I think the long-term follow-up, the most important benefit is we know about the disease fully. How that person reacts. How the person responded. Or how the person’s brain responded to the disease fully, in a long-term way. We also know about the rehabilitation, which is required okay, for the particular disease. Okay, in terms of vocational, in terms of every aspect of the injured patient.” [P]

“to develop a proper compensation mechanism for the TBI patients to cope with the long-term sequelae, and early therapies to delay or to reduce the long-term impact among brain-injured patients by earlier initiation of appropriate management (such as cognitive rehabilitation) or medications with long-term follow-up.” [H]

“For me, the patient will get a confidence in, in his self and he will understand more about his injury and that is also will help if maybe we put on epileptic drug which will, we should remove that slowly with the check-up of each neurologists. Sometimes we use that for people that maybe are coming with seizure, with epilepsy, post-trauma. That also to help them, to help them to make a follow up on those drugs […] what can I say that I think that the benefits is not just for us it is also for the patient because always patients will, will have contact with his, with his doctor and after refer they have some things to, new happen for him.” [M]

“I just received a couple of days ago a request from a patient that I operated in 2012 for a severity TBI with a bilateral decompressive craniectomy because he needs a summary a very good summary of the whole process that we have been doing with him with this data collection because he is asking for a permit of disability for economical support from the government […] our summary will be really important. So, we never think about that type of conditions sometimes when you are doing the following of the patients and this is a case that illustrates very well the importance of this kind of follow up.” [I]

Regular follow-up identified complications early and managed sequelae as they arose, or provided the means to refer on for additional therapies, interventions or investigations. Follow-up was also seen by many as an opportunity for patient counselling, education, and both vocational and occupational support, the latter regarded by a few as one of the most important facets of long-term care; assisting the patient’s successful reintegration into home, employment, and wider society.

Physician.

Physician benefits included a means to inform resource allocation, and aid strategizing/modifying therapies (where treatment modification reduced healthcare costs this was seen as an additional patient benefit.

“And the other thing is like we can recognise the factors in long term follow up that can be minimised. The treatment protocols like if you are giving one treatment, and if you are doing one long term follow up with the patient, so the patient, we cannot through research and through long term follow up, so we follow the patient for long term so we can do research and learn many things, like treatment protocols, like what treatment is effective, which treatment is ineffective.” [E]

“with the one monthly follow-up, I’m learning more on who, where to focus our treatment on. Because we cannot treat everybody optimally. We don’t have the facilities. Do you understand? […] we need to know who did well, who did badly. And then tailor our care management so that we spend more of the resources on the ones who will do well. And recognise the ones who won’t do well early.” [F]

Personal learning, professional development, and the opportunity to enhance the patient-doctor relationship were also perceived as benefits.

State.

Successful follow-up and, where possible, reintegration into society post-injury was seen as advantageous to the state in reducing the long-term reliance on the state for disability or unemployment grants. Various parties within society were additionally seen to have a role to play in accommodating the injured patient and assisting them back into productivity.

“The state benefits because, again depends on what the state capacity is for providing disability support. If one reduces disability and improves outcome by doing a better job in the acute care scenario, as well as with rehab services, you reduce the overall burden on the state” [O]

“For example if they have traumatic brain injury and we have a patient who develops seizures or this patient lose some physical capabilities if they follow, if I give the assistance for a longer period I think that the chance of having better results in terms of rehab is bigger. So the consequence of this is that the probability of return to work is bigger if they have a closer medical assistance for a longer period.” [J]

“if you have the long-term outcomes with you, you will be in a much better position to know—encourage people to follow road safety rules, not to drink and drive, not to do this, not to do that. So, in order to make any guidelines, you need to have long-term outcomes […] all these long-term follow-ups have benefits-one is for the policymakers, one is for the patient. […] Then you can tell where you’re falling short, what do you need to improve and how much is the input required by each one of the players in the game- you know what I mean? Stakeholders. One is the system, the society, the police officers, doctors, nurses, and so on, and so forth.” [N]

Governments, state officials, insurance and legislative bodies were deemed to have a responsibility in both ensuring and providing the means for follow-up, described as ‘state buy-in’, whereby the state should contribute to the investments and resources required, including: equipment, transport services and adequate post-graduate training programmes.

Science.

Follow-up was also considered advantageous for science, where local data contributed to the international evidence base on TBI in low-resource settings.

“We can recognise the factors in long-term follow-up that can be minimised. The treatment protocols, like if you are giving one treatment […] we follow the patient for long-term so we can do research and learn many things, like treatment protocols, like what treatment is effective, which treatment is ineffective.” [E]

“most of times we need long-term follow up for mainly to try out researches and the follow up of this patient in outpatient system […] [there] is a benefit to our society because the production or scientific production is a way that we have to go through in order to improve our universities to improve our medical team. So having, having this follow up we can make science in a better way in this helps us to, to improve.” [J]

“It’s good for research because we should have data of our patients. We should save everything about them to see what we can add more in our practice or we should to improve in our practice” [M]

A few regarded research as a key driver in conducting follow-up, with trials, cohort studies and registries all facilitating the collection of reliable data, to improve local practice.

The absent patient.

Poverty was regarded as the most substantial barrier to follow-up, with many patients described as ‘financially exhausted’, their socioeconomic status largely governing their post-injury care. With the centralisation of many specialist services and lack of suitable or affordable transport options, geographical barriers prevented many from accessing outpatient services. Disability and assistance needs exacerbated perceived barriers. Participants felt that communication often broke down after discharge to the community, where patients were unable to maintain contact with their clinician, or new care providers lacked appropriate channels of communication with the neurotrauma hospital. Therefore, follow-up was seen by a few clinicians as a privilege, reflecting a lack of equal access to all that may benefit.

“the centre where I am working is a tertiary centre. And it’s in the capital city. So those patients who are outside, out of the [city], so there are for them sometimes it will be difficult for them to come. […] Because it will be very far. It takes one day to come by bus […] that will be challenging. Sometimes the patient do not come to follow up because of the distance” [B]

“In our country it is very difficult to do the following process in person face to face because due to the organisation of the system, many patients will never return after surgery or they return only in a short period of time like one or three months after surgery but then they are allocated by the insurance systems in very different places. So, most of these places never or rarely didn’t belong to the same centres that are doing the acute care so they belong to some other insurance areas and the communication is totally lost.” [I]

“Sometimes also you know like patients who have- patients have sometimes psychological problems regarding their disabilities. So they are frustrated when they come to the hospital. I have seen some sort of that patient. So they don’t come. They prefer to stay at home. Some people also go to private clinics so they have missed follow ups at outpatient clinic of [the] university hospital.” [G]

Participants also thought patients and families were not always aware of TBI sequalae and the value of follow-up to recovery. It was also these more subtle sequalae that some participants felt may be the reason a patient did not attend for follow-up. These sequelae were often thought to be psychological, behavioural or cognitive in nature, and were perceived to manifest in a patient forgetting appointments, refusing medication, or lack of willingness to cooperate with further follow-up, or a general lack of concern for their own recovery.

The recovered patient.

Participants felt patients and families may consider recovery to be complete, or complete enough, to not require further follow-up services. Some suggested that patients would be in contact if there were genuine need. Therefore, a lapse in contact was often interpreted as the patient reaching a satisfactory level of recovery.

“some of them do not come after one month if they feel that they are doing okay, they don’t come is a like a problem of culture but sometimes they don’t come and they come with complications that is a bad thing for the kind of patient we do deal with like in Africa it’s a problem of culture” [K]

“But then [the patient] starts feeling that he is well, he is performing daily activities, he’s not able to concentrate on minute activities or major functional activities. And his family members are also, “okay, okay that’s good, he is taking himself and he is going and”. They’re not concerned about the behaviour changes or the complexity of activity which he is unable to perform after head injury or so. So once that patient starts feeling that he’s better and the relatives of the patient start feeling he is better, their patient is better, okay. But then they feel there is no need to follow up.” [P]

However, concerns were raised by a few participants that patients and their families may be more focused on physical recovery and less on the more subtle sequelae such as psychological or cognitive changes that would equally affect their daily lives.

The triaged patient.

The dominant view of clinicians was that multiple instances of long-term follow-up was both needed and advantageous, yet contrasting views suggested follow-up may not be for everyone, and was dependant on the accessibility, capacities, and objectives of the care provider, and the wishes of the patient.

“I guess that a longer follow up may be, may be good in some cases but not in all cases and again I would say that it is the new era I don’t think that a formal follow up will be, could be like I guess that a longer follow up can be replaced with connecting with through the Internet or through the phone call. So I think that only in a few cases would qualify for a longer follow up” [D]

“Also to specify the period of follow up for each patient, so that I can’t exhaust myself in someone, someone who was having like mild non-surgical, small extradural haematoma, he shouldn’t come to follow up after six months. It won’t benefit anything, okay. But someone who is brain contusion and has neurological deficits, he should come to assess if he can continue on rehabilitation, if he’s improving or not. Because sometimes it takes about six months until he moves his limb. Okay? So we should weigh those who can come for follow over long time, and those who can come for follow up over short time.” [G]

“Because we cannot treat everybody optimally. We don’t have the facilities. […] So for trauma, trauma follow up is prognostication. I can look after this guy, this guy there’s no point. This one there’s a point in doing that kind of stuff.” [F]

Severe cases or patients with continuing complications were prioritised, those with no further problems were less important for follow-up.

“So, we routinely follow up severe TBI children for a period of about four to five years. So that’s run by our surgical department. But we connect with developmental services, rehab services, speech therapy, occupational therapy, physiotherapy. [long-term follow-up is for] the severe cases and the ones with moderate TBI who flag up problems. So, it all depends really on what the assessment in the early phase is.” [O]

In-person assessment.

Participants emphasised the value of in-person assessments which facilitated physical assessment and were thus considered more reliable than remote methods. However, in the context of overburdened services, assessments were often non-specific and focused on managing any further physical manifestations of injury. Due to time pressures few opportunities existed for more sensitive outcome assessment beyond a binary ‘fit and well, or not’.

“we bring them in. […] we always physically see them. We tend not to rely on remote measures in part because it’s a lot less predictable whether- if they’ve got capacity for kind of internet capacity for instance is going to be much reduced in our communities. […]in those exceptional cases we’ll try to make use of kind of remote assessment or link them in with a local hospital and then communicate with that hospital. But for the vast majority of our patients we try to get them physically in, because that’s the most reliable way of doing so. […] I think it’s hard to give you one answer across all the tools. I think that it depends on the quality of initial assessment that was done. So, the primary thing that one’s losing with online tools is your ability to physical examine a patient.” [O]

“I think it is better to see the patient like that we can make a neurological exam correctly, but in the case that we don’t have choice yes it is better to use telephone to know if, to ask some questions for the patient and to get feedback about that you know if they’re going well or not. Yeah but it is not sufficient but if we don’t have choice yes it is better to telephone them” [M]

“We see the general condition of a patent, any neurological deficiency the patient is having, okay. And we are unable to perform the full battery of tests okay which will be required to know every lobe signs, okay. So, the amount of time which one has to give on a neurosurgical patient at least on the first follow up is decreased.” [P]

“In the assessment we do, I say to you that the time is short for each patient. Once the patient comes, I look at the card of the patient. I see the initial diagnosis, what happened to him inside our department. And the last follow up. Then I ask the patient is there any new event or problem? If he says no, it’s okay, no problem. I look at the medications and I see if- I check for the medication he will go on. And I check for the medications that he should stop. That’s for a regular patient. If the patient has a problem when I ask him, I examine the patient, it’s just a crude examination. It’s not a full neurological examination. Because there is no time.” [G]

Where used, the Glasgow Outcome Scale, its Extended version, and the Modified Rankin Scale were the most common outcome measures completed during in-person assessment, providing clinical teams with a reliable record of patient outcome. Other outcomes used by some included the Karnofsky scale, Lagos Brain Disability Examination Scale, Mayo-Portland Inventory, and 36-Item Short Form Survey.

Technology-based assessment.

Despite the endorsement of in-person assessments, almost all participants felt incorporating technologies would prove useful in follow-up and many had begun to use remote technology to meet patient needs during the COVID-19 pandemic. Technology to enhance follow-up was also part of a wider desire for improved infrastructure including electronic patient records and appointment management systems.

SMS, telephone, and videoconferencing were positively appraised. However, some technologies were favoured over others, suggesting a hierarchy existed. Telephone and instant messaging were particularly favoured due to their accessibility, ability to replicate in-person assessment and suitability for those with limited education or literacy. Advantages to patients included increasing access to follow-up and reducing unnecessary travel. Burden on outpatient facilities was also thought to be reduced by dealing with concerns swiftly by remote means.

“Just get their number, get their mobile phone number. The telephoning density mobile system especially is so remarkably good, even where you think people are so down-and-out, and they have it, mobile phones.” [R]

“Yeah, one is obviously telephone and if the telephone can be added with videos, like a patient can show you different parts of their bodies or specific examination and show you whether they are able to move their limbs, these kind of things. Or if they have wound, they take a picture of it and take videos and send to you, that you can analyse it, these kind of things help.” [Q]

“Most of the time when we cannot observe a seizure we ask our patient to send us a video when the patient seizures. So many patients, many attendants do send us a video of their patients when they experiencing the seizure. So in that case we have a very good idea then what’s going on. This is something that I think that the use of WhatsApp is very good in that case.” [D]

“So, some of our patients will be travelling for four to six hours just to come to a clinic appointment with me that’s over in 15, 20 minutes, and they get back on their transport to go back. Horribly, horribly inefficient way of running an economy. So, for a relatively modest investment in online support locally, whether for each individual family, or some kind of hub, massive savings and massive reduction in inconvenience to patients.” [O]

Additional benefits included opportunities for more frequent points of patient contact, in addition to providing infrastructure for connected inter-hospital systems and providing formal outcome data that could be used in research to improve practice.

Barriers and additional considerations for follow-up.

Technology was seen by some as primarily for research and not every day clinical practice. Additional costs for personnel, infrastructure, or equipment to deliver such technology was hard to justify as was any intervention that may increase the pressure on an overburdened health service. Patient executive functioning, language and literacy were also considered barriers to effective assessment using remote means and may require reliance on proxies such as family members.

“We should utilise any technologies which will enable us to have periodical or continuous assessments without lead[ing] to a heavy toll on healthcare workers.” [H]

“I will suggest to try to have a lot of neurosurgeons like that. Maybe some of us could do like, I don’t know like a boot camp in the, in the rural town to go to try to see the patients that can just walk, to come to see this boot camp in the area. That’s maybe we should have agreed marking about our patients in the region. Like that we can try to make an organisation that yes you know this month you will go in this area to try to follow up of the TBI patients that we take care something like that” [M]

“Cost is most like, it should be done on that government sector level. There should be more hospitals, more neurosurgical training centres, and more funds allocated to research […] That should be going into each and every hospital even by the government […] there should be some sort of transportation for these patients. So if transportation is available, I think it will be much easier to follow those patients” [E]

Lastly, several secondary considerations were identified as relevant to improved long-term follow-up in LMICs. These included: improved long-term neurotrauma services, more neurosurgical training programmes, peripheral or satellite neurotrauma sites, increased personnel, improved transport infrastructure, and increased funding for local research.