Journal of Cancer Survivorship

, Volume 11, Issue 1, pp 158–165 | Cite as

Physical and psychological health in rare cancer survivors

  • Nora K. Horick
  • Adoma Manful
  • Jan Lowery
  • Susan Domchek
  • Patricia Moorman
  • Constance Griffin
  • Kala Visvanathan
  • Claudine Isaacs
  • Anita Y. Kinney
  • Dianne M. FinkelsteinEmail author



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.

Implications for Cancer Survivors

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.


Quality of life SF-12 Brief symptom survey Loneliness Rare cancer 



The authors would like to thank the Rare Cancer Genetics Registry participants and project managers, and the NIH for funding this project.

Authors’ contributions

NH, DMF data analysis, NH, AM, DMF manuscript writing, JL, SD, PM, CG, CI, AYK, DMF recruitment and development of idea and tools, KV manuscript review.

Compliance with ethical standards

Conflict of interest

The authors declare no potential conflict of interests.


NIH grants RC1 CA 144706 and R01 CA160233.


The article is dedicated to Dr. Connie Griffin who did not live to see the importance of her contributions to the Rare Cancer Genetics Registry.

Supplementary material

11764_2016_573_MOESM1_ESM.docx (56 kb)
Supplement Table 1 (DOCX 55 kb)


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Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Nora K. Horick
    • 1
  • Adoma Manful
    • 1
  • Jan Lowery
    • 2
  • Susan Domchek
    • 3
  • Patricia Moorman
    • 4
  • Constance Griffin
    • 5
  • Kala Visvanathan
    • 6
  • Claudine Isaacs
    • 7
  • Anita Y. Kinney
    • 8
  • Dianne M. Finkelstein
    • 1
    • 9
    Email author
  1. 1.Massachusetts General Hospital Biostatistics CenterBostonUSA
  2. 2.School of Public Health Department of EpidemiologyUniversity of Colorado DenverDenverUSA
  3. 3.Department of MedicineUniversity of PennsylvaniaPhiladelphiaUSA
  4. 4.Duke University Medical CenterDurhamUSA
  5. 5.The Sidney Kimmel Comprehensive Cancer Center at Johns HopkinsBaltimoreUSA
  6. 6.Department of EpidemiologyJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  7. 7.Lombardi Comprehensive Cancer CenterGeorgetown UniversityWashingtonUSA
  8. 8.Department of Internal MedicineUniversity of New MexicoAlbuquerqueUSA
  9. 9.Department of BiostatisticsHarvard TH Chan School of Public HealthBostonUSA

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