In reviewing an email of recently published articles at JAMA Surgery, I was pleased to see two pieces in particular. The first was a systematic review of quality-of-life outcomes in surgical versus non-surgical treatment for breast cancer. The other was a secondary analysis of a randomized controlled trial for appendicitis that looked at quality of life and patient satisfaction seven years after patients received either antibiotic therapy or an appendectomy.
I was glad to see these because the entire focus of both studies is on quality of life, an outcome neglected for far too long in medical research. More studies are focusing on quality of life, but still not enough. In fact, I would argue that every single study done on interventions for a medical issue should include at least some sort of secondary endpoint related to quality of life that is separate from cataloging adverse events.
The rise of research entities like the Patient-Centered Outcomes Research Institute increasingly acknowledges the relevance and importance of quality-of-life measures to medical treatment. Historically speaking, the concept is pretty new. Though the scientific method dates back to the Renaissance, it was the Age of Enlightenment when it truly began flourishing. But it focused almost exclusively on observed outcomes that could be objectively measured. That didn’t leave much room for subjective experiences, which are just as crucial to health (possibly more crucial, some would argue).
Throughout most of the 20th century, medical research focused on lab values and objective changes in observable disease progression as benchmarks of success. But how a patient feels and how their life is or isn’t improved by a treatment matters more to most people receiving the treatment.
When I searched PubMed for articles using “quality of life” in the title, the oldest one dates to 1959 — unsettlingly published in The Eugenics Review about population control. It wasn’t until 1966 that the first paper in PubMed addressed quality of life as we think of it today as a result of medical treatment. In that editorial, author J.R.E. quotes Francis Bacon — “The office of medicine is but to tune this curious harp of man’s body and reduce it to harmony” — and points out how medicine is falling short. “Almost four centuries later, in the accelerating scientific revolution that Francis Bacon fathered, medicine is doing the tuning with unprecedented skill but is having trouble with the harmony,” the editorial says.
Cancer researchers have devoted the most energy to studying quality of life, likely because it didn’t take long to realize that the harsh effects of many cancer treatments sometimes can be worse than the alternative. Over time, quality of life assessments have been developed and validated to make it easier to capture a subjective experience with objective measurements.
The rise of drugs with both dramatic therapeutic impact and substantial side effects, such as biologics for autoimmune conditions, has increased attention to quality of life in medical treatment. Big strides in women’s health, particularly for menopause, also have shone a light on the need to consider quality of life.
But other areas of medicine lag on this. For example, it’s only been in the past decade or so that the experience of a mother during pregnancy and childbirth has been taken seriously in OB-GYN research, and it remains a problem in prenatal, perinatal and postpartum care.
All this history is the reason for my being excited that a single email listing recent studies had two meaty ones about quality of life. A study does not have to focus specifically on quality of life to provide valuable insights into it. But at the least, studies looking at medical interventions should reveal awareness of its importance, again going beyond a laundry list of side effects.
If you are covering a study about treatments for a condition and it does not even touch on quality of life, ask the researcher about it during the interview. The more journalists press for data on this crucial aspect of medicine, the more likely it will become a part of the national conversation about what constitutes “effective” and beneficial medical care.