Physical and psychological health in rare cancer survivors
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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.
KeywordsQuality 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.
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.
- 1.American Cancer Society. Cancer treatment & survivorship facts & figs. 2016–2017. Atlanta: American Cancer Society; 2016.Google Scholar
- 8.NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines): NCPGiON. Distress Management. 2015. NCCN.org.
- 11.Ware Jr J, Kosinski M, Turner-Bowker DM, Gandek B. How to score version 2 of the SF-12 Health Survery Lincoln, RI. Lincoln MA: Quality Metric Incorporated; 2004.Google Scholar
- 12.Maruish M, editor. User's manual for the SF-36v Health Survery. 3rd ed. Lincoln, MA: Quality Metric Incorporated; 2011.Google Scholar
- 13.Derogatis L, editor. BSI 18 brief symptom inventory 18, administration, scoring, and procedures manual. Minneapolis: NCS Pearson; 2000.Google Scholar
- 16.Le Corroller-Soriano AG, Bouhnik AD, Preau M, Malavolti L, Julian-Reynier C, Auquier P, et al. Does cancer survivors’ health-related quality of life depend on cancer type? Findings from a large French national sample 2 years after cancer diagnosis. Eur J Cancer Care (Engl). 2011;20(1):132–40. doi: 10.1111/j.1365-2354.2009.01160.x.CrossRefGoogle Scholar