Quality of life (QOL) is a multidimensional concept that includes an individual’s subjective evaluation of all aspects of their life – physical, mental, emotional, social and even philosophical and spiritual. The last two are my personal incorporations into the definition since this is what human beings become when faced with adversity.
Thankfully, the entity of a Vestibular Schwannoma is benign one, but unfortunately in a ‘malignant’ location of the head. Patients with small tumours can sometimes have exasperating tinnitus and those with larger ones, disabling ataxia. Some people with tiny tumours have the apprehensive option of watchful waiting, while others with giant masses have no choice but an operation. Surgery includes encountering vital cranial nerves, blood vessels and the brain stem in the vicinity of the tumour. If any of these vital structures are disturbed, the event can damage QOL.
Hence, QOL becomes a moving target from one individual to another and more so at different time points in people’s life. It varies with age, sex, character, socio-economic status, job satisfaction, the nature of our relationships and our willingness to accept our situation and make the most of it.
I’d like to tell the story of Paul Kalanithi, a brilliant neurosurgeon. While in his final years of residency at Stanford and fielding job offers from several major universities, he was suddenly diagnosed with metastatic lung cancer. In a single moment of recognition, everything he had imagined for himself and his wife evaporated, and a new future had to be imagined. For him, exemplary QOL transgressed from the desire of achieving academic excellence and stepping onto center-stage, to being able to hold his newly born daughter’s hand to whom he dedicated the heart-wrenching story of his life. In his book titled "When Breath Becomes Air", the quest for 3-year-old is what makes his life more meaningful. It’s a book of two halves: the first is about becoming a doctor and saving a life, the second about becoming a patient and facing death. I encourage you to read it.
Fortunately, in acoustic schwannomas death is a rarity, almost never seen in this era of modern medicine. Our strategy of treatment has evolved significantly over the last 3 decades, ranging from the enthusiasm of complete removal, which is often fraught with facial disfiguration and hearing loss, to the current philosophy of tailoring the operation to such an extent so as to minimise the tumour size. The latter strategy enables preservation of these nerves, leaving the remnant behind for radiosurgery to control.
What has also evolved is patients’ involvement in decision-making of their care and their willingness to participate in research allowing doctors to gain a better understanding of their overall condition. Several studies have shown that the perception of an outcome by the patients often differs from that of the physician and hence Quality of Life (QOL) studies are needed to assess the effect of treatment as defined by the patient. Answering uncomplicated questions on standardised global health tools such as the Short Form 36 (SF-36) and the Glasgow Benefit Inventory (GBI) can do this. Studying patients QOL, both before and after treatment, or even while watchful waiting gives insight into the holistic effects of observation or surgery and not just a simplified account of the ‘audio-facial’ morbidity that this tumour is associated with.
We conducted a prospective study in 100 patients who underwent surgery for large and giant tumours. The interesting finding was that these patients scored lower on all the QOL domains compared with the normative population. This finding was corroborated by another study which showed that the SF-36 scores of vestibular schwannoma patients at diagnosis were significantly lower compared not only with scores of healthy controls, but also with those of patients with head and neck cancer, benign prostate hypertrophy, or chronic obstructive pulmonary disease and deaf patients. Thus, it is prudent to use each patient as his or her own control to determine QOL outcome after surgery. If the normative population scores are used to determine the outcome of surgery, the benefits of surgery will be underestimated.
The results of our study showed an improvement in health-related QOL compared with preoperative status in all cases, with 63%–85% of patients showing a clinically important difference in various domains at one year. A second follow-up evaluation was performed at two years and showed sustained improvement in SF-36 scores. In some domains, there was a further improvement beyond the first follow-up. On the GBI, 87% of patients reported improvement, 1% felt no change and 12% of patients reported deterioration.
In conclusion, the QOL is more important than life itself. There is no passion for being found in settling for a life that is less than the one you are capable of living. Our happiness is enriched by the essence of our thoughts, so let’s have positive ones. Our well-being is enhanced by the nature of our actions, so let’s have kind ones. Let us fill each and every waking moment with enthusiasm, affection, and gratitude. Like Abraham Lincoln once said, ‘it’s not the years in your life but the life on your years that makes all the difference.