A qualitative analysis identified 4 themes that could be improved upon to help with symptom management in patients with head and neck cancer.
In a qualitative analysis, investigators identified 4 themes to help improve head and neck cancer symptom management and may also serve as a guide for improved symptom monitoring.
Among the 4 themes were timely physical symptom management, information as a tool, barriers to psychosocial support, and external factors magnifying symptom burden. Investigators noted that patients had varied symptom assessment, with some feeling it inspired self-reflection and symptom detection, and others feeling disempowered, especially when their symptom scores were inconsistently reviewed or acted on.
In a population of 22 patients, 20 agreed to participate. The median age was 59.5 years, 11 patients were male, and 13 were White. Additionally, 11 patients had advanced-stage disease, with the most common disease sites being the oropharynx and oral cavity. Patients had an annual income of less than $40,000 CAD.
Patients who participated listed a number of symptoms from cancer-related symptoms such as pain, fatigue, and depressed mood to disease-specific issues such as difficulty breathing or swallowing, and mucositis. Most of the population appreciated the use of large interdisciplinary teams to manage their head and neck cancer symptoms. The majority of patients felt that their physical symptoms were properly addressed by clinicians, as well as maintaining an open line of communication and allying with practitioners during treatment. Patients also expressed getting along well with home care nurses and finding them a good source of communication.
Patients also discussed concerns over the timeliness of their physical needs being expressed. In certain cases, patients who did not receive prompt symptom management often ended up in the emergency department. It was also mentioned that the head and neck cancer nursing line—a line allowing patients to call and express urgent concerns of questions—could be improved through extended hours. Alternatively, the concerns could also be addressed by a specialized nurse navigator, a service that some patients found clunky. It was reported that the service could be improved by allowing communication through email and an online or app-based platform.
Despite some patients reporting that their physical symptoms were being managed, others felt that their care was not consistently addressed. In that regard, information needs were regarded as a notable care gap—particularly treatment and its impact on patients were important to symptom management. Patients reported feeling empowered when given adequate information about their disease and the potential impact of treatment.
Patients who did not have their information needs met reported feeling that their symptom burden was more significant. Some reported that their information needs were unmet, with patients describing clinic visits as being too brief or overwhelming in information. They also expressed frustration in a lack of head and neck cancer resources. Although some patients often turned to online forums for support and information, investigators noted that the need for more information was not universal.
After diagnosis, patients described feeling distressed and often lonely or isolated. Although open communication with one's support network helped with coping, the strategy was not viable for patients who had lost the ability to speak. It was reported that some patients relied on friends, family, faith, or community for support. Most patients reported being aware of the mental healthcare support and services that were accessible through their treatment center, although those who were interested reported that services were often difficult to access.
One notable point was the need for mental health services to be available sooner, with many reporting a desire for services to be made available prior to starting treatment. It was also made known that some patients would have prefered a reassessment of mental health needs throughout their treatment journey.
Investigators identified that distance from a patient’s treatment center and restrictions from COVID-19 were exacerbating symptom burden. Those who were a long distance from the treatment center felt it affected their physical health as well as disrupted home care, with some patients travelling several hours a day to receive care. This also introduced the possibility financial toxicity. Investigators identified an association between distance from treatment centers and emotional distress. The majority of patients reported feeling exhausted by their commutes, as well as intensified anxiety and concerns for safety.
The pandemic created additional barriers for patients who needed to attend treatments in-person. Patients often needed an additional person at appointments for support or to act as a notetaker, but most COVID policies forbade outside visitors.
Investigators identified multiple recommendations for clinicians to increase supportive care:
Noel CW, Du YJ, Baran E, et al. Enhancing outpatient symptom management in patients with head and neck cancer: a qualitative analysis. JAMA Otolaryngol Head Neck Surg. Published Online March 3, 2022. doi:10.1001/jamaoto.2021.4555