A couple of days ago, I happened to see my friend’s grandchild. The three-month old baby, the child’s mother noted, had slow wandering eye movements and did not seem to focus well.

The child had albinism- a disorder that affects colour of hair, skin and eyes.

The mother was getting jittery. Will my son be able to read, write and perform well? Will he have normal vision? Will his skin darken as he grows? Her concerns were understandable.

A day later, I was in Nagpur when my friend called me informing that his family was about to see two famous paediatricians in the town. They had already sought appointment from each of them. Although I know almost nothing about paediatrics, I chose to accompany them.

The first paediatrician ushered us in his office. Gray haired – in his mid fifties- he treated the parents with courtesy, spoke gently to each of them, inquired if they were related by blood, wrote down baby’s normal milestones of development and performed a quick neurological examination. He laid his hands on abdomen and palpated liver and spleen. His gaze lingered on baby’s eye for few seconds and he spotted mild nystagmus and blue iris.

“Do not worry,” he tried to comfort anxious parents. “I have treated many children with albinism and they have grown normally. I know a practising surgeon who has albinism. The vision will not deteriorate further,” he said. And the physical exam suggests a perfectly normal brain, he pronounced.

“The science is growing so fast- who knows we might soon see magical cure for this genetic disorder,” he showed a ray of hope, as he praised the parents for preserving baby’s cord blood. He noted their email ID and promised to return their calls and respond to their emails.

Ten minutes later, we came out of the doctor’s chamber. Although the paediatrician was kind and oozed optimism, the parents did not look happy.

We quickly moved to the second paediatrician whose fourth- floor clinic was just a five-minute drive from the nursing home we were returning from. The bald doctor, in his mid-forties meant business- he weighed the baby and measured the height, performed a quick general and neurological examination, poked his hands in the child’s belly, and tried to peep into the retina. Quickly taking off a copy of Nelson text book of Paediatrics from the sparsely populated book-shelf, he scanned few paragraphs on albinism, and said that pigment disorder apart, the child looked normal. He suggested that a dermatologist and an ophthalmologist examine the child. A few questions and one-line flat answers followed. His eyes grew impatient, signalling that our time was up and we needed to go.

My friend’s family was obviously hugely dis-satisfied. “Here is a doctor who is trying to make a diagnosis by reading a textbook,” they didn’t appreciate doctor openly admitting his ignorance. “We need to go back to Kolkata and see few experts ,” they voiced their plan.

The two consultations were great lessons for me. When people get sick, they seek doctor’s help to get rid of disease, and resolve their uncertainties. Indeed the traditional sources of information, knowledge, and advice for most patients are doctors. When doctors are consulted about a relatively rare genetic disorder, they find it difficult to acknowledge their gaps in knowledge and are unable to give evidence- based answers to patients and their relatives. They turn evasive, start patronizing, and deliver advices that lack accuracy. For busy practitioners accessing accurate sources of current information, separating wheat from chaff, judging the quality of the article, and using current best evidence in making clinical decisions about the care of individual patients can be a challenging task – more so because most doctors never receive training to do so. For busy practitioners, who are so time-challenged, it is impossible to master tips and tricks to access the current best evidence in real time environment.

I returned home and wondered if I should try an alternate approach. I picked up an electronic text book- UpToDate . Although this book is an extremely useful source of current knowledge and updates itself every four months, I couldn’t get what I wanted. “Could the five –step evidence based medicine approach generate information that is scientifically accurate and satisfying to the parents?” I asked myself. A PubMed search using an auto-complete feature in the search box to identify the most appropriate key word, “oculocutaneous albinism” generated 882 hits. Next, I decided to be more selective and chose “oculocutaneous albinism type 2” to search the published literature. Now the hits were manageable- only 119. And as I quickly eyeballed the citations on page 1, the 13th citation in the list caught my eye. The PDF of the article – thankfully free- contained enough information to answer the concerns -voiced-and unvoiced – the parents had. I emailed the article to the parents and helped them understand the disorder.

It took me only three minutes, and few mouse clicks, to reach the source of information!

A text book of Evidence-based Medicine sums up the scenario very succinctly:

“Almost every time we see a patient, we will need new information about some elements of their diagnosis, prognosis or management. Some times what we need will be self evident and the necessary information will be at our fingertips. At other times our information needs will not be so obvious, and the necessary information will be in the form of external evidence we will have to track down. For many clinicians, the efforts required to both ask questions and track down answers are so formidable that, when coupled with our very limited time for reading and keeping up to date, most of our information needs never get met“.

There is more in the medical consultations than meets the eye!