title: Physical and psychological health in rare cancer survivors.
abstract: Registries provide a unique tool for tracking quality of life in rare cancer survivors, whose survivorship experience is less known than for common cancers. This paper reports on these outcomes in 321 patients enrolled in the Rare Cancer Genetics Registry diagnosed with rare gastrointestinal, genitourinary, gynecologic, sarcoma, head/neck, or hematologic cancers.
  
  
  
  Four outcomes were assessed, reflecting registrants' self-reported physical and mental health, psychological distress, and loneliness. Combining all patients into a single analysis, regression was used to evaluate the association between outcomes and socio-demographic and clinical factors.
  
  
  
  Median time since diagnosis was 3 years (range 0-9); 69 % were no longer in treatment. Poorer physical health was reported in registrants who were older at diagnosis, unmarried, and still in treatment. Poorer mental status was associated with younger diagnosis age and unmarried status. Psychological distress varied by cancer type and was higher among currently treated and unmarried registrants. Greater loneliness was reported in registrants with gynecological cancers, and those who were less educated or unmarried. The physical and mental health profile of rare cancer survivors is similar to what is reported for common cancers.
  
  
  
  Unmarried participants reported poorer outcomes on all measures of quality of life. Furthermore, physical and mental health were not significantly different by cancer type after adjustment for diagnosis age, whether currently in treatment and marital status. Thus, the combined analysis performed here is a useful way to analyze outcomes in less common diseases. Our findings could be valuable in guiding evaluation and intervention for issues impacting quality of life.
  
  
  
  Rare cancer survivors, particularly those without spousal support, should be monitored for challenges to the physical as well as psychological aspects of quality of life.
authors.affiliation: Massachusetts General Hospital Biostatistics Center, 50 Staniford St. Suite 560, Boston, MA, 02114, USA.
authors.forename: Nora K
authors.initials: NK
authors.lastname: Horick
authors.affiliation: Massachusetts General Hospital Biostatistics Center, 50 Staniford St. Suite 560, Boston, MA, 02114, USA.
authors.forename: Adoma
authors.initials: A
authors.lastname: Manful
authors.affiliation: School of Public Health Department of Epidemiology, University of Colorado Denver, Denver, CO, USA.
authors.forename: Jan
authors.initials: J
authors.lastname: Lowery
authors.affiliation: Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Domchek
authors.affiliation: Duke University Medical Center, Durham, NC, USA.
authors.forename: Patricia
authors.initials: P
authors.lastname: Moorman
authors.affiliation: The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA.
authors.forename: Constance
authors.initials: C
authors.lastname: Griffin
authors.affiliation: Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Kala
authors.initials: K
authors.lastname: Visvanathan
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC, USA.
authors.forename: Claudine
authors.initials: C
authors.lastname: Isaacs
authors.affiliation: Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA.
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
authors.affiliation: Massachusetts General Hospital Biostatistics Center, 50 Staniford St. Suite 560, Boston, MA, 02114, USA. dfinkelstein@mgh.harvard.edu.|Department of Biostatistics, Harvard TH Chan School of Public Health, Boston, MA, USA. dfinkelstein@mgh.harvard.edu.
authors.forename: Dianne M
authors.initials: DM
authors.lastname: Finkelstein
mesh_terms: D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008603:Mental Health / Q000639:trends*; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D035583:Rare Diseases / Q000523:psychology*; D012042:Registries; D015996:Survival Rate; D017741:Survivors / Q000523:psychology*
keywords: Brief symptom survey; Loneliness; Quality of life; Rare cancer; SF-12