In the early hours of the morning in the Cardiac Intensive Care Unit (CICU), a mother worries about her sleeping child’s raspy, irregular breathing. She then looks at the machine he’s hooked up to – a machine that monitors his heartbeat – to make sure he’s doing okay. It doesn’t allay her fears and she counts the hours till a nurse provides her with an update about her child’s progress. He’s stable, she’s relieved but only momentarily. That’s because her son may never have a carefree childhood s"I am excited to join a committee whose vision aligns with something I truly believe in - the integration of patient reported outcomes and value-based care in healthcare planning."
Dr Laila Ladak, Assistant Professor Research, SONAM and the department of Paediatrics, AKU
ince he would require constant follow-ups throughout his life.
“That is the reality of children with congenital heart disease (CHD),” says Dr Laila Ladak, an alumna of Aga Khan University’s School of Nursing and Midwifery (SONAM) as she speaks about her doctoral research on the quality of life of CHD patients after surgery.
CHD refers to birth defects in the structure of the heart that makes the child vulnerable to various physical, emotional, psychological and physiological problems as they grow and could impact their health related quality of life.”
“Chronic diseases like CHD require life-long care,” Dr Ladak adds. “Unfortunately, the issues related to accessibility, availability, affordability and lack of health literacy in Pakistan lead to delays in diagnosis and treatment. Many families whose children are undergoing treatment, are unable to attend post-surgery follow-ups due to financial constraints or the challenge of travelling long distances.”
Dr Ladak picked up these insights while working as an intensive care nurse, an experience which led to her pursuing a PhD on the experience of patients and their families post-surgery.
Recently, Dr Ladak has been invited to join a global expert group spearheaded by the International Consortium for Health Outcomes Measurement (ICHOM) in Washington, DC. The group comprises of twenty members; including representatives from North America, Canada, Europe, Australia and New Zealand, and now South Asia. The group is developing a set of standards for CHD following a value-based healthcare model that not only involves professionals and researchers, but also CHD patients and their parents in the overall process.
“I am excited to join a committee whose vision aligns with something I truly believe in - the integration of patient reported outcomes and value-based care in healthcare planning,” she says. Dr Ladak is the first and only nurse expert on this group from low and middle-income countries (LMIC). She feels this is an excellent opportunity for her to work towards democratising healthcare for patients and making them key stakeholders in decision making, rather than being the passive recipients.
“There is huge gap in healthcare delivery between tertiary care hospitals and rural communities. You can’t get treatment for CHD outside of major cities and those living in rural areas won’t seek treatment unless they are engaged and feel in control of their child’s treatment. I was also interested to explore how we as health care professionals can play our role to bridge this gap to empower the patients and their families and improve their health related quality of life”, she adds.
Dr Ladak has recently returned to her alma mater after completing her PhD in Nursing from the University of Sydney, Australia where she also serves as an honorary faculty.