Social consequences of disease-related symptoms in patients with metastatic small bowel NET: a qualitative study
Summary
Social consequences of disease-related symptoms in patients with metastatic small bowel NET: a qualitative study
Background: Neuroendocrine tumors (NET) are rare and often slowly progressive tumors. One of the most common localizations of NET in the gastro-intestinal system is the small bowel. It is known that disease-related symptoms, like flushes, dyspnea and diarrhea, can occur on a daily basis. These symptoms seem to influence the ability to perform daily-life tasks and fulfill social roles. But little is known about how patients experience and deal with these consequences in their day-to-day life.
Aim: To explore the social consequences of disease-related symptoms in patients with
a metastatic neuroendocrine tumor in the small bowel.
Method: A qualitative study, according to the grounded theory approach was performed using semi-structured face-to-face interviews, between January and June 2018 in the Netherlands. Data were analyzed independently by two researchers using the constant comparison method. Data collection and data analysis alternated.
Results: Twelve respondents (male n=5, age range 42-66 years) participated. Fatigue, diarrhea and flushes were the most prominent disease-related symptoms. Fatigue was related with limitations in day-to-day life in almost all patients. In patients who experienced diarrhea and flushes, social activities were influenced by feelings of shame. Resilience seemed to be the decisive factor in the experienced social consequences. If patients are resilient, social consequences are less experienced as a burden. Over time, the patient perspective on their lives moved from being diagnosed with NET to living with NET.
Conclusion: All patients experienced some social consequences of disease-related symptoms. The experienced burden of these consequences seems to be determined by resilience.
Recommendations: Resilience seems to be an important factor in the experienced social consequences. Several instruments can measure resilience but further research is necessary to determine whether screening resilience in NET patients adds value compared to standard care.