124 Background: The symptom burden faced by long-term head and neck cancer survivors could inform clinical decision making but it is not well understood. Methods: In 2016 we surveyed current enrollees of Group Health (an integrated health care delivery system in Washington State) who were aged ≥18 years when diagnosed with head and neck cancer in 2011 (n = 54). Symptoms experienced in the past 24 hours were assessed using the validated MD Anderson Symptom Inventory head and neck cancer module (MDASI-HN). Survivors were asked to report on a 10-point scale the severity of the problem at its worst (“not present” to “as bad as you can imagine”). Self-reported risk factor and demographic information were also collected. Results: Eighty percent of persons responded to the survey (n = 43) via web questionnaire (n = 12), mailed questionnaire (n = 26) or telephone interview (n = 5). One person who reported to have not been diagnosed with head and neck cancer was excluded, leaving 42 participants. Overall, 29% had no more than mild symptoms (all MDASI-HN symptoms rated <5 ), 43% had no more than moderate symptoms (all MDASI-HN symptoms rated <7 ), 57% had one or more symptoms rated as severe (at least one MDASI-HN symptom rated ≥7 ), and 45% had two or more symptoms rated as severe. The symptoms most commonly rated as severe were: dry mouth (38%), difficulty swallowing or chewing (17%), pain (17%), fatigue (17%), disturbed sleep (15%), feeling sad (15%), choking or coughing (15%), problems with tasting food (15%), problems with teeth or gums (15%), problems with mucus in the mouth or throat (12%), and feeling distressed (12%). Persons who rated one or more symptom as severe were more likely than those who did not to have had cancer recurrence (44% versus 6%), receipt of cancer treatment in the previous three years (36% versus 17%), age ≥65 years at diagnosis (63% versus 17%), non-white race (21% versus 6%), no more than high school education (33% versus 17%), current unemployment/disability/retirement (71% versus 44%), and annual household income <$100,000 (71% versus 56%). Conclusions: In the context of limited data on this topic, in this small study we found that it was not uncommon for five-year survivors of head and neck cancer to experience one or more symptoms which they rated as being a severe problem.
Post-treatment head and neck cancer survivors’ approaches to self-management: A qualitative study
