Treatment goals
confusion, memory loss, anxiety, pain
A total of 262 Veterans (98%) reported their treatment goals at the start of a randomized clinical treatment trial. Five participants’ responses were not coded due to being intentionally skipped or left blank. There was a mean of 1.42 codes per participant. Four overarching thematic categories emerged: 1) Get better/healthier, 2) Improve quality of life, 3) Obtain validation of GWI symptoms, and 4) Don’t know/Don’t have any.The most prevalent treatment goal theme was to get better/healthier (n = 198, 51.1% of 387 responses, 67.6% of participants). There were four subcategories, or codes, within this theme. These included general goals to get better (e.g., "to be well again”, “I want to get better”; n = 39), as well as specific symptom reduction goals such as improving the physical, emotional, and cognitive symptoms of GWI (e.g., “to get as much relief from the symptoms as possible,” “get rid of my pain,” “improve my energy levels,” “reduce or eliminate the confusion and muddled thinking, and control my anxiety”; n = 87). Additional codes within this theme included prevention of symptom progression/coping with symptoms (e.g., “to prevent memory loss,” “halt the illness”, “learn new coping skills I might not know about”; n = 47), and goals to find and engage in effective treatments for GWI (e.g., “learn about new therapies and treatments for GWI”; “get the best out of my appointments”; n = 25).Participants also endorsed treatment goals to improve quality of life (n = 112, 28.9% of 387 responses, 34.4% of participants). In contrast to responses within the get better/healthier theme, responses falling within this theme capture goals that are more focused on improving quality of life and functioning beyond physical health or symptoms specific to GWI. Goals grouped in this theme included improving general quality of life (e.g., “I would like to have the best quality of life that can be obtained,” “to gain some kind of quality of life”; n = 31) followed by improving lifestyle factors (e.g., “to have a healthier lifestyle,” “better sleep,” “diet and exercise”; n = 24), and goals to help others (e.g., “pass on knowledge learned from the study to my fellow vets,” “to help out other veterans”; n = 21) and connect with others socially (e.g., “to socialize, I like people,” “spend quality time with my family and friends”; n = 16). Additional quality of life goals included existential/spiritual goals (e.g., “to try to find a purpose in life,” “to be a better person”; n = 15), and financial/vocational goals (e.g., “work and provide for my family”; n = 5).A slightly smaller portion of participants stated that at least one of their treatment goals was to receive validation for the GWI symptoms (n = 66, 17.1% of 387 responses, 24.8% of participants). There were two subcategories, or codes, within this theme. The first code captured a goal to explicitly receive validation from the government or healthcare providers (e.g., “get the VA to admit that I have it”; n = 5). The second included goals to obtain an explanation for their symptoms (e.g., “figure out why I have symptoms”, “try and understand my GWI”; n = 61). The authors categorized these responses under the validation theme because as a historically contested condition, obtaining an explanation for why GWI developed (e.g., potential exposures to hazardous substances during military service) and understanding the nature of GWI (e.g., symptoms are real, GWI is a real condition) can be extremely validating for veterans with GWI.Few participants stated that they don’t know/don’t have any specific treatment goals (n = 11, 2.8% of 387 responses, 4.2% of participants).