A health outcome of interest to me is understanding quality of life and health outcomes among adults with congenital urologic diseases. We know very little about adults living with congenital urologic diseases because these patients did not previously live long enough. Now that their healthcare has improved, we have a new population of young adults who are living with congenital urologic diseases and this population is very poorly studied. We are working towards understanding the needs and lives of these individuals.
1) One structural determinant is occupation. Many of these adults are unemployed because they are unable to work or have trouble finding work. This greatly affects their quality of life – without a job they are supported by their families and often live at home. Those who are able to work have a chance at living independently and these jobs give people a sense of belonging to a workforce, a set of individuals outside of their family members with whom they can make meaningful relationships, and a sense of purpose given that they are able to be productive members of society. These aspects could greatly affect their quality of life and it will be important for us to understand the role of occupation on quality of life in these individuals.
One intermediary determinant is psychosocial circumstances. These individuals often require social support from their families and their health outcomes and quality of life is greatly tied to their social support, for better or worse. Their psychological wellbeing is impacted by their level of social support as well. Of course, these are key players that affect quality of life in these individuals.
Another intermediary determinant is the health system. Many of these individuals rely on Medicaid for their care given that they are considered disabled. Many also receive state funding and this is typically only in place until they reach a certain age. At that point some of these patients experience a loss of coverage and even with Medicaid have lots of difficulty with access to care – either finding a physician who will take their insurance or just finding a physician who will take care of their very complex medical issues. This access to the health system and the ability of these patients to be seen within the health system itself has a potentially large impact on their healthcare outcomes and their quality of life as well.
2) Socioeconomic factors earlier in the lifecourse could absolutely affect these patients’ quality of life. Growing up, these patients’ health outcomes and quality of life is often tied to their family. If they have a family with good social support, access to healthcare, higher income, etc, then they are often able to get better treatment for their condition. In addition, if they have family members with time and resources to advocate for them, this can mean the patient receiving better education in school, participation in extra-curricular activities, etc. All of these factors are very relevant to their downstream quality of life as adults, as these aspects in childhood will have laid a foundation for how much they are able to be independent, productive members of society in adulthood.