A missed opportunity for early cancer diagnosis
Author: Dr. Kusiima Joy, FETP Fellow, Uganda Cancer Institute
Mary (not real name) is a young lady who looked towards a happy motherhood when she discovered she was pregnant with Suubi (not real name). Mary’s pregnancy and delivery were all normal and smooth with no complications. Suubi achieved all her milestones as per expected timelines until at one year of age, when Mary noted that Suubi’s gait looked rather unusual. Immediately, she visited a renowned doctor specialist in caring for children and all basic tests turned out normal. Mary was reassured that Suubi was alright. Suubi was scheduled for follow up review at four years of age. How- ever, at three years, the mother noted that Suubi’s speech was a little slower than expected compared to other children of her age (in the neighborhood) and she could not hold a pencil firmly when scribbling. Mary had a bad feeling about these startle symptoms but she held onto the health workers’ reassurance. At four years of age, the mother faithfully returned to this renowned specialist for review with similar complaints. This time, the specialist not only repeated the tests conducted three years ago but also referred to another specialist who had advanced skills in children ailments. Suubi was finally diagnosed with an advanced malignancy in the brain approximately three years after initial contact with a health worker.
This story represents a significant number of cancer patients who have interacted with the health system early enough but due to health system related factors, opportunities for early cancer diagnosis were missed. These patients have finally made it to the recommended cancer treatment centers with advanced disease and they have to pay a lot of money to have a good quality end of life care (palliative care).
Early detection is the hall mark of effective successful cancer treatment, however majority of cancer patients at treatment institutions in Uganda usually present at designated treatment centers with disease in advanced stages. While it is true that patient related factors may be responsible for late diagnosis, there are health system barriers that more than often also result in late diagnosis of cancer patients even when the patients interact with a health system in time. Health worker related factors that may result into delayed cancer diagnosis include; a low index of suspicion, lack of adequate cancer knowledge ( “the eye see what it knows”), absence of cancer screening guidelines and unclear referral systems.
Early cancer diagnosis can only happen when a health worker maintains a high index of suspicion for any patients who present at their desk. A high index of suspicion can be achieved by enhancing cancer related knowledge levels among health workers. A study conducted among medical workers in Mulago National referral teaching hospital showed that only 29% of the workers were knowledgeable about the risks of a common cancer (cancer of the cervix) [1].
If a health worker in a teaching institution has such knowledge levels, what would we expect of health workers who reside in rural institutions and serve over 80 percent of the Ugandan population?
The Ugandan health system is made up of the public and private sectors. All these players need to be constantly sensitized about the increasing number of cancer cases and the importance of early diagnosis.
Cancer awareness programmes among health workers should take a bottom up approach. With such an approach, sensitization starts at the lowest health care unit and slowly moves up the tier in the health care system. The lowest healthcare units in our system include the Village Health Team (VHTs) and health workers at HCII level. VHTs are responsible for the welfare of the community. They have been involved in many integrated health programmes such as the integrated management of child hood illness, responses to the HIV AIDS response and care for orphans and vulnerable children. They have been involved in many integrated health programmes such as the integrated management of child hood illness, responses to the HIV AIDS response and care for orphans and vulnerable children.
There is need to design programmes to increase cancer awareness among this group. Knowledge of cancer among the VHTs and health workers
at HC11, will translate into increased sensitization of the family unit and timely referral to higher diagnosing units.
Cadres at the health center HCIII levels are mandated to provide basic preventive, promotive and curative care. These cadres need to be equipped with key information on the likely presentations of common malignancies. They should be given skills on how to con- duct proven screening techniques such as self-breast examination, visual inspection of the cervix. This will contribute to timely refer- ral of cancer suspects to higher units.
Increased awareness of cancer among health workers at the HCV level general and regional hospitals, will result into active screening of population at risk, improvement in specimen collection and follow up.
This bottom up approach in improving cancer diagnostic knowledge among health workers will also foster strong collaborations between specialized cancer treatment units and the lower health units. This will contribute to timely diagnosis of cancer among patients who interact with the health workers early enough.
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