Introduction

Medically unexplained syndromes (MUS), also termed persistent physical symptoms, are illnesses that manifest as clusters of physical symptoms without a known biological cause, such as fibromyalgia and chronic fatigue syndrome. These conditions are not only prevalent (affecting up to 34% of patients within primary care settings), but also chronic and disabling [1]. Certain subpopulations, such as Gulf War veterans (former military service members deployed to the Persian Gulf region in 1990–1991), have particularly high rates and severity of persistent physical symptoms known as Gulf War Illness (GWI) [2]. GWI consists of the presence of chronic, medically unexplained symptoms in at least 3 of 6 symptom clusters, which include pain, fatigue, neurocognitive, respiratory, skin, and gastrointestinal domains [3].

While clinical practice guidelines recommend non-pharmaceutical, behavioral approaches to GWI management [4, 5], it is well-documented that patients with MUS (including Gulf War veterans) receive excessive medical testing and pharmacological treatment, much of which is ineffective, inefficient, and costly [6–9]. The persistence of this disease-driven approach to MUS care may be due, at least in part, to providers believing that patients with MUS want medical interventions and would reject behavioral treatment recommendations, leading providers to feel subjectively pressured to engage patients in medico-centric approaches to care [10]. However, preliminary evidence suggests that MUS patients are seeking alternatives to medical intervention. For example, one study found that patients with MUS are more likely to seek emotional support than a somatic intervention [11].

This lack of concordance between providers and MUS patients about approaches to MUS care may not only contribute to excessive medical treatments, but also poorer treatment outcomes. Illness concordance is defined as a shared understanding between patients and providers about the nature, cause, and best treatment for persistent physical symptoms. Research shows that illness concordance is a strong predictor of treatment outcomes, such as treatment adherence [12], self-management [13], and satisfaction [14, 15]. Unfortunately, there is poor concordance between patients with persistent physical symptoms and providers regarding the nature and treatment of persistent physical symptoms, and particularly among veterans with Gulf War Illness [2]. Veterans with Gulf War Illness are often dissatisfied with care [16], describing encounters with their medical providers as invalidating [17], which contributes to worse treatment outcomes [2].

Developing better patient-provider concordance when treating GWI is inherently difficult because the cause of GWI is unknown and limited medical treatment options render a disease-driven approach ineffective. A person-centered approach to care may be vital in improving concordance and implementing effective treatment. Person-centered health care is defined as care in which “individuals’ values and preferences are elicited and, once expressed, guide all aspects of their health care, supporting their realistic health and life goals [18].” Good person-centered care begins with understanding the whole person, including their life context, values, and importantly the individual’s life and treatment goals. Aligning care with the patient’s values and goals can help providers initiate a concordant treatment plan that improves functioning and quality of life, even in the face of a medical condition that is poorly understood. In other words, identifying patient goals can help providers and patients develop a shared understanding of the best approaches to address the patient’s goals, even though there is limited evidence regarding the cause and physiological underpinning of GWI.

Unfortunately, there is a lack of research on patient-generated goals among veterans with GWI. Studies examining patient goals for those with other persistent physical symptom conditions such as chronic pain and fibromyalgia have found that patients’ goals tend to focus on reducing pain/symptom intensity [19–21], with one study showing that 48% of chronic pain patients rate reducing pain intensity as their top priority [20]. Patients also report improving functioning and quality of life factors, such as physical activity and social relationships, as common treatment goals [22, 23]. However, these studies have two limitations. First, the above studies only examined treatment goals. It is important to understand both treatment and life goals as the latter reflect the “why” behind an individual’s behavior and are an essential component of person-centered care [24]. Research suggests that linking treatment goals to life goals can increase goal attainment and maintenance [25]. Second, the above studies only looked at patient goals in the context of medical encounters and pharmacological treatments, yet clinical practice guidelines encourage providers treating patients with MUS to use non-pharmaceutical, behavioral approaches. To our knowledge, there is only one study to date that specifically examined patient-generated goals within the context of a behavioral therapy among individuals with persistent physical symptoms [26]. Results of this study showed that patients undergoing cognitive-behavioral therapy for chronic pain set goals related to improving quality of life such as increasing physical activity levels, improving functional status and overall wellness, and engaging in recreational activities.

A better understanding of patient-generated goals among veterans with GWI could facilitate a person-centered approach to care. Goals reveal the patient’s targets for change, and can guide practitioners in selecting, tailoring, and implementing treatment options [26]. For example, if a patient with chronic pain has a goal of improving mobility, his provider may suggest a treatment plan that includes education on the pain cycle, pacing activity levels to minimize pain exacerbations, and referral to physical therapy. Such collaborative goal setting is related to increased patient motivation, adherence, and satisfaction with treatment across multiple patient populations and settings [27–30] and has been identified as critical in the treatment of persistent physical symptoms [31, 32].

The current study therefore aims to assess both treatment goals and life goals among veterans with GWI. We did so by asking veterans with GWI about treatment goals and life goals at the start of a randomized clinical treatment trial comparing two behavioral treatments for GWI. Our objective was to identify the most commonly endorsed goals among this population and organize these goals into a typology that can be used to both guide future research and better inform more tailored and efficacious behavioral treatments.

Materials and methods

The study assessed baseline data collected during a multi-site, randomized clinical trial comparing Problem-Solving Treatment to Health Education among veterans with Gulf War Illness (GWI) [ClinicalTrials.gov Identifier: NCT02161133]. Participants were recruited nationally through letters and flyers as well as various outreach events. Monetary compensation was provided for participation. The study was reviewed by the Veterans Affairs New Jersey Healthcare System Institutional Review Board, Canandaigua VA Medical Center Institutional Review Board, and Edith Nourse Rogers Memorial VA Hospital (now VA Bedford Health Care System) Institutional Review Board (MIRB: 01250). The study was funded by the Veterans Affairs Clinical Sciences Research and Development (VA CSR&D). All participants provided written consent to participate.

Results

Discussion

This study aimed to identify the commonly reported treatment and life goals for veterans receiving treatment for Gulf War Illness, a highly disabling medically unexplained syndrome. We found that treatment goals among this population fell into the following four themes: 1) Get better/healthier, 2) Improve quality of life, 3) Obtain validation of GWI symptoms, and 4) Don’t know/Don’t have any. We found that life goals among this population fell into the following six themes: 1) Live a fulfilling life, 2) Live a happy life, 3) Live a healthy life, 4) Be productive/financially successful, 5) Manage GWI, and 6) Don’t know/Don’t have any.

Treatment goals were largely focused on getting better/healthier (e.g., improving GWI symptoms, learning to cope with symptoms, preventing symptom progression), with 67.6% of participants endorsing at least one treatment goal to get better/healthier. These findings are largely consistent with previous research examining treatment goals among patients with chronic medical conditions, especially in a treatment-seeking sample such as this one. Similar to our sample, research has shown that treatment goals among individuals with chronic pain, arthritis, and other chronic illnesses are focused on improving physical symptoms such as pain intensity and improving functional status [26, 36, 37].

Life goals among veterans with GWI were predominantly focused on living a fulfilling life. Over half of participants reported at least one life goal related to living a fulfilling life focused on connecting to others, helping others, and finding meaning and spiritual fulfillment. Furthermore, 34.6% of participants reported at least one life goal related to enjoying life. Our findings provide a guide that may be helpful to providers when exploring goals with veterans with GWI. While each veteran’s unique goals should be assessed, these themes could be helpful for providers to keep in mind as potential areas to explore.

It is also important to note that about one fourth of veterans in our sample endorsed treatment goals related to receiving validation of their GWI symptoms. Veterans reported a desire to obtain validation from their providers that their symptoms are real, and to better understand their symptoms. This finding is not surprising considering previous literature that patients with MUS often report feeling dismissed by healthcare providers [38, 39]. However, we also found that 16.3% of veterans in our sample identified at least one life goal related to managing their symptoms of GWI. This is an interesting finding that may be suggestive of the large impact GWI symptoms have had on veteran’s lives. We believe this finding underscores the importance of incorporating validation into the treatment of GWI and building strong patient-provider alliances.

Assessing both treatment and life goals of veterans with GWI is important because doing so may aid in improving patient-provider concordance around GWI management, strengthen veteran-provider relationships, and identify patient-centered treatment objectives. While this study highlights common treatment and life goals for veterans with GWI, future research is needed to establish how to best incorporate both kinds of goals into care. One model that is already widely used within the Veteran’s Health Administration is the VA’s Whole Health Program. In this model, treatment and life goals are assessed, and treatment goals are framed as a means to ultimately achieve life goals. For example, a veteran who is presenting to treatment with a desire to reduce pain may be motivated to engage in treatment to achieve an overarching life goal of being an active and engaged father to his children. Thus, the Whole Health model may be a helpful framework to consider incorporating into the care of veterans with GWI. Our new goal typology can facilitate future research on models of care and allow for cross-study comparison of patient-generated goals among those with GWI.

There are some limitations to the current study. First, the sample was mainly comprised of white, male veterans who use the Veterans Health Administration. Our focus on goals in veterans with GWI addressed a gap in the literature; however, absent other evidence, these results should not be generalized beyond this group. Second, the use of a single question to assess treatment goals and a single question to assess life goals is a limitation. For example, we were unable to assess whether the participants understood the distinction between the questions delineating treatment and life goals or assess any relationship between these two categories of goals.

In sum, this study contributes new knowledge by identifying the common treatment and life goals among veterans with GWI. The findings revealed that veterans with GWI identify treatment goals related to getting better/improving GWI, improving quality of life, and receiving validation of their symptoms, and the large majority of veterans identify life goals related to living a fulfilling, productive, and happy life. Explicitly assessing veterans’ treatment and life goals and working towards a shared treatment goal that incorporates veteran’s overarching life goals may be beneficial to incorporate into routine clinical practice. Doing so could help promote patient-provider concordance around the course of treatment for Gulf War Illness and support a more person-centered approach to care.