When misdiagnosis means a twenty hour journey to and from a major hospital

When misdiagnosis means a twenty hour journey to and from a major hospital

When mis diagnosis means in a twenty hour journey to and from a major hospital: ‘inappropriate referral’

By: Dr.Sabrina Kitaka

We were completing a 6 hour ward round on a hot Thursday morning at the Infectious Diseases Ward at the Mulago National Referral Hospital. The temperatures were scorching and literally everybody including the 4th year junior clerks, the 5th year senior clerks, the 1st and 3rd year residents of paediatrics and family medicine, the nursing staff and the intern doctors, nurses and the pharmacist as well as the paediatricians were exhausted and possibly hypoglycemic. We had reviewed babies with complications of malaria, tuberculosis, and a few with tetanus, and some with complex heart lesions.


The tradition of our major ward round is to review all the critically ill and complicated patients on the ward and discuss the  details of further management. As I was leaving for my next assignment that day, a timid nursing assistant requested me to review a new admission. This was a three days old baby who had been referred from a far away regional hospital with a diagnosis of a ‘meningomyelocoel’.The parents had been on the bus the whole night and had travelled for more than 10 hours!! I recalled the whole team so that we could review the baby, as I thought this would be a great teaching opportunity.


As I walked towards the baby’s crib, I kept on thinking to myself how I was going to have to consult neurosurgery, and transfer the baby from the medical ward. I was also thinking about the complications of the ‘meningomyelocoel': hydrocephalus, infection, and what I was going to explain to the parents. On reviewing the baby, I smiled with relief, because it was a simple cephalohematoma! 


The baby was in a good general condition with no other complications. Both parents were well, and extremely relived after I explained to them exactly what was going on. A blood work up done revealed normal values. The parents were more than pleased to hear the news, and prepared to travel back another 10 hours so that the father could enjoy his last paternity leave day (in Uganda the official paternity leave is 4 days).


 A cephalohematoma is a traumatic subperiosteal haematoma that occurs underneath the skin, in the periosteum of the infant's skull bone. (See photo above.) A cephalohematoma does not pose any risk to the brain cells, but it causes unnecessary pooling of the blood from damaged blood vessels between the skull and inner layers of the skin.If the bleeding is massive,it can become infected,or can cause hypovolemia and shock as well as severe anemia.


Diagnosis: No laboratory studies usually are necessary. Vitamin C deficiency has been reported to possibly be associated with development of cephalohematomas. Skull x-ray or CT scanning is used if neurological symptoms appear.


Usual management is mainly observation. Phototherapy may be necessary if blood accumulation is significant leading to jaundice. Rarely anaemia can develop needing blood transfusion. Aspiration to remove accumulated blood is not recommended because of the risk of infection and abscess formation. The presence of a bleeding disorder should be considered but is rare. Skull radiography or CT scanning is also used if concomitant depressed skull fracture is a possibility. It may take weeks and months to resolve and disappear completely.


Lessons learned: The inappropriate referral in this case was a complete inconvenience for the family, and placed the family at risk for a 20 hours bus ride.The inappropriate referral  was time consuming for the team at our teaching hospital. A study by Kyruus in 2014 highlights how “clinically inappropriate physician referrals” can lead to poor patient care and costly inefficiencies. Nearly 20 million times a year in the United States patients are sent to a doctor who is not the right match for their specific condition. This is one of many key statistics in the new physician referrals survey conducted by Kyruus, that highlights the massive issues in the doctor-patient referral system.


Why does this matter? “Clinically inappropriate” referrals can lead to poorer health outcomes for patients, increased hospital re-admissions, ineffective use of doctors’ time and unnecessary patient costs, generating billions of dollars in avoidable spending across the entire U.S. healthcare system. A similar study needs to be conducted in Eastern Africa and costed to assess the value of ‘inappropriate referrals’. One of the common problems reported by Sridhayan Mahalingam et al in secondary care is the “inappropriateness” of referrals to various specialist clinics from primary care. This can result in the inefficient use of resources and the financial burden associated with this. Furthermore, it can also lead to poorer relationships at the primary-secondary care interface and reduced patient satisfaction.



Muniini K. Mulera
7 years ago
As you have pointed out, Sabrina, misdiagnosis and inappropriate referral is a universal problem. Of course it is always better to refer a patient than to attempt to manage a problem while you lack the knowledge, tools or experience. In this particular case, a common error that the inexperienced person makes is to stick a needle into the swelling either for diagnostic purposes or for drainage in the hope of effecting a cure. Such interventions frequently lead to infections, converting a generally harmless condition into a potentially fatal one. So we should be thankful that the good doctor did not do engage in cowboy medicine.

That said, in a society where parents face severe financial challenges, a referral from a district or regional hospital to far away Kampala, Nairobi, Dar es Salaam and so on, can be a most harrowing experience. Fear of the big city is real for many people. (Incidentally, here in the Toronto area, many folks are scared to be referred to hospitals in the downtown area. Some have never ventured into the big city.)

So your article is very important and should be of interest not only to health care professionals, but also to policy makers and the general public. It raises three key questions:

1. Why was the referring doctor unable to make the correct diagnosis of this common condition?
2. Why did the doctor not have a consultant pediatrician at the regional health centre?
3. Why do all such cases have to be referred to the University Teaching Hospital in faraway Kampala?

I see a number of opportunities for improvement:

1. Education, education! Continuing Professional Development opportunities need to be availed to all health care providers. Mobile education clinics would utilise the limited expertise to cover most of the country. Here I have in mind a program where Dr. Sabrina Kitaka and her team are funded to provide workshops for multidisciplinary attendees at regional hospitals. Physicians, clinical officers, nurses and other colleagues would be provided with funding to attend these workshops.

2. Once organised and properly funded, these workshops would be mandatory for all members of the health care team. Documentary evidence of attendance would be a mandatory requirement for annual renewal of licence to practice. The details and required number of workshops would be determined by the various regulatory agencies.

3. In addition to the workshops, cyber-learning opportunities should be developed at every Health Centre IV and above. It is an inexpensive intervention that yields high dividends for the patients and their families.

4. Scaling up of efforts to recruit specialists at every district and regional hospital should be one of the priorities of the health care program. Notwithstanding the shortage of such specialists, one can expect improved availability if they are adequately paid and provided with the facilities they need to do their work.

5. Privileged sons and daughters of a given community should consider ways they can support health care access in their place of birth or upbringing. For example, a group of us from Mparo, Kigezi are working with our Canadian friends to support the community’s effort to improve maternal and child health. Mahali Salama Uganda (Safe Place Uganda) is the organization through which we hope to work in partnership with the community to advance the capabilities at Mparo Health Centre IV. I know others who are doing likewise elsewhere. However, imagine if we all did this in our respective communities all over East Africa! We do not have to be on the ground to make a difference.

Thank you again, Sabrina. I do hope that more and more East African health professionals will learn about this Fireplace and benefit from your expertise. Please continue to share your real-life experiences on the ground.

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