title: Late effects in survivors of central nervous system tumors: reports by patients and proxies.
abstract: OBJECTIVE
  With the 5-year survival of patients with brain tumors increasing as treatment modalities are optimized, there are a large number of brain cancer survivors who experience long-term sequelae of their treatment. Patient-reported outcomes represent an important and often unrecorded aspect of survivorship.
  
  
  METHODS
  An Internet-based survivorship care plan tool which allowed patients or their proxies to answer a series of questions about the patient's illness course was used to collect patient-reported toxicity data for 254 individuals who had undergone treatment for brain cancer. Demographic, treatment, and side effect profiles data were reviewed.
  
  
  RESULTS
  Median age of diagnosis was 42 years, and 88% (n = 223) of the patients were Caucasian. Only 11.1% (n = 29) had previously been offered a survivorship care plan. Of the total group of brain tumor survivors, 25.4% of responders described themselves as living with metastatic disease, while 14.5% of responders were experiencing recurrence status post treatment. Late effects most commonly reported for all brain malignancy survivors using this tool were cognitive changes, fatigue, skin changes, hearing loss, weakness, and numbness. The incidence of late effects varied with age at time of treatment and length of time since treatment.
  
  
  CONCLUSIONS
  Individuals undergoing treatment for brain cancers experience a diverse array of long-term sequelae, and the majority of these patients do not have access to or familiarity with a survivorship care plan.
  
  
  CONCLUSIONS
  Patient-focused tools to evaluate these side effects and access to survivorship plans are important for comprehensive reporting of late effects as well as implementation of survivorship care plans for long-term management of these effects. Understanding the late effects that patients experience will help providers council patients regarding expectations prior to treatment, as well as management of symptoms in the survivorship phase of care.
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, 19143, USA.
authors.forename: Kelly
authors.initials: K
authors.lastname: Sloane
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, 19143, USA.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Vachani
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, 19143, USA.
authors.forename: Margaret K
authors.initials: MK
authors.lastname: Hampshire
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, 19143, USA.
authors.forename: James M
authors.initials: JM
authors.lastname: Metz
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, 19143, USA. hill@uphs.upenn.edu.|Perelman School of Medicine at the University of Pennsylvania, 3400 Civic Center Boulevard, TRC 2, Philadelphia, PA, 19104, USA. hill@uphs.upenn.edu.
authors.forename: Christine E
authors.initials: CE
authors.lastname: Hill-Kayser
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D016543:Central Nervous System Neoplasms / Q000401:mortality / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009364:Neoplasm Recurrence, Local; D015996:Survival Rate; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
keywords: Brain radiation; Brain surgery; Brain tumor; Patient-reported outcomes; Survivorship care plan