Table 1.

Provider considerations for making treatment recommendations

Characteristics of the patient/parent/child
Demographic characteristics (age, sex, family history)‘If we're thinking about Cytoxan we're thinking about the age of the child and the toxicity.’‘The patient age group because if it's a teenager, it's even more of an issue in terms of physical appearance.’‘If they're a female, and they're young, and they're in their childbearing age, we have to take that into account, too. Even for general therapy because ACE inhibitors—could have an effect on the unborn child. Some medications can affect their fertility too.‘In pediatrics, especially we'll think about if there's a family history of nephrotic syndrome. If we believe this is a genetic form of nephrotic syndrome, we may choose not to use immunosuppressant therapy.’
Clinical characteristics (diagnosis/prognosis/disease severity, comorbidities)‘…It is easier when I have diagnostic certainty. So when a patient who is four years old presents with a classic presentation minimal change nephrotic syndrome, it's easy for me to sit down confidentially and tell the family this is what we should do. If it's a teenage boy with severe FSGS, interstitial inflammation, and chronic kidney disease, it's also an easier conversation because there aren't options. Once you get to those grey zones you sort of have to have complicated conversations where we're not sure which is the right immunosuppression.’‘There also may be different patient specific characteristics that come into play more in the considerations with adults compared to children. Comorbid conditions need to be considered when deciding what agent to choose.’‘What is the down side to using steroids? Even though they're indicated, do the down sides outweigh the benefits of therapy?’
Psychosocial and socio-economic considerations (adherence of patient/parent/child financial resources)‘We think about how compliant or adherent the family is, especially for meds that need monitoring like tacrolimus or cyclosporine.’‘Another issue that our patients encounter is the inability to pay the bills. So a major factor in deciding which drug to use in our patients is based on affordability of the drug.’
Patient preference‘Their own subjective risk assessment…Some people really don't want to be on dialysis and they're willing to risk death not to go on it…Everybody's afraid of something different. Other people don't want the cancer risks from the Cytoxan…you have to give them the different choices so they can pick and choose the path they want to go down.’‘I also worry about other side effects in general for patient preference.… some of these medications have pretty severe GI side effects, and I definitely talk to my patients about …what side effects really they're most worried about… I think there's a whole range of side effects that are different for different patients.’