Veterans’ Experiences of and Preferences for Patient-Centered, Measurement-Based PTSD Care

Abstract

Background:

Up to 50% of veterans drop out of trauma-focused evidence-based psychotherapies (TF-EBP) without completing treatment or recovering; evidence suggests this is in part because their posttraumatic stress disorder (PTSD) care is insufficiently patient-centered. There is also evidence that measurement-based care (MBC) for mental health should be personalized to the patient, yet this is not common practice in VA PTSD care.

Objectives:

To explore veterans’ experiences and preferences for aligning measurement-based PTSD care with their own treatment goals.

Method:

Qualitative interviews were conducted with veterans (n=15) with PTSD who had received at least 2 sessions of a TF-EBP.

Measures:

Survey on the administration of outcomes questionnaires and demographics and an interview about their most recent TF-EBP episode.

Results:

Half of veterans had symptom-focused goals and half did not; all had at least one treatment goal that was not symptom-focused. They typically met their goals about functioning and coping skills but not their symptom reduction goals. We found veterans overall were receptive to MBC but preferred patient-reported outcomes measures about functioning, wellbeing, coping skills, and understanding their trauma more than the commonly used PTSD symptom scale (the PCL-5).

Conclusions:

Many veterans in this sample disliked the PCL-5 because it reinforced their maladaptive cognitions. Such veterans might be more receptive to MBC if offered patient-report outcomes measures that better align with their functional and wellbeing goals. For many goal/outcome areas, psychometrically sound measures exist and require better implementation in PTSD care. For some areas, scale development is needed.

Posttraumatic stress disorder (PTSD) is the most prevalent mental health problem among post-9/11 military veterans.^1,2 Multiple trauma-focused evidence-based psychotherapies (TF-EBPs) are highly effective for treating PTSD.³ All TF-EBPs require the patient to think about topics individuals with PTSD avoid: the trauma that occurred and/or negative posttraumatic cognitions. Partly because of this, almost half of veterans who initiate a TF-EBP drop out before completing or fully recovering.⁴

Because TF-EBPs ask so many patients, it is crucial for patients to buy in to the treatment rationale and understand how it fits their goals.^5,6 Patient-centered care is essential for PTSD because it facilitates retention in TF-EBPs.^7,8 Patient-centered care is care for the whole person, attention to the patient’s own goals and concerns, clinician-patient collaboration and agreement on decisions, and care focused on prevention and health promotion.⁹

Research on goal-aligned PTSD care is limited. A study about veterans seeking PTSD care¹⁰ found veterans wanted to improve specific PTSD symptoms (eg, nightmares, anger), improve coping skills, and improve functioning. A study of veterans initiating a TF-EBP through the United States Department of Veterans Affairs (VA) qualitatively explored their treatment goals and perceived ability to achieve these goals.¹¹ Most of their goals were to improve PTSD symptoms, personal wellbeing and growth, and interpersonal functioning.

One aspect of PTSD care where attention to patient goals must be improved is measurement-based care (MBC). MBC is the use of patient-reported treatment outcome measures (PROMs) to monitor treatment progress and inform treatment decision-making. The VA MBC clinical model is Collect-Share-Act. ¹² Collect means clinicians collaborate with veterans to choose relevant PROMs and then administer them throughout treatment. Experts recently recommended including PROMs that assess nonsymptom indicators of wellbeing and functioning.^13–16 Clinicians Share PROM data with the veteran to ensure that their respective goals for treatment align and ensure a shared language to discuss treatment progress. Clinicians and veterans periodically discuss whether improvement toward agreed-upon target outcomes is sufficient; if not, they Act by collaboratively adjusting treatment.

The initial VA rollout of the MBC in Mental Health Initiative promoted 4 symptom-focused PROMs; the one promoted for PTSD care was the PTSD Checklist for DSM-5 (PCL-5).¹⁷ Most PROMs available through the VA electronic health records software are symptom-focused.^15,18 It is no wonder, then, that fewer than 1% of veterans with a mental health diagnosis complete validated PROMs on wellbeing or functioning, whereas 90% complete a symptom-focused PROM and ∼24% of all PROM administrations are the PCL-5.¹⁸ Thus, even when veterans set functioning or wellbeing goals, PROMs are rarely personalized to align with these goals.

It is possible to deliver MBC in a patient-centered way; brief, well-validated PROMs exist that might align with nonsymptom goals.^19,20 However, a lack of patient-centeredness has been a barrier to MBC implementation. Many VA clinicians are reluctant to implement MBC, in part due to concerns that focusing solely on symptoms is insufficiently patient-centered.^14,21 Likewise, VA leaders and researchers have repeatedly called for the use of more personalized PROMs in mental health care,^13–16,22 yet systemic barriers persist. In sum, there is a need to improve the patient-centeredness of measurement-based care, specifically for VA PTSD care.

THE PRESENT STUDY

To inform and facilitate increased goal-aligned MBC for veterans with PTSD, we interviewed veterans who had initiated TF-EBP treatment in VA outpatient mental health clinics. The purpose of this study was to explore (1) veterans’ goals for PTSD care, (2) ways their goals are incorporated into MBC, and (3) what their preferences are for PROM delivery, specifically (4) their preferences for tailoring MBC to align with their treatment goals.

METHOD

Participants

Fifteen veterans participated (Table 1). Participant eligibility criteria were as follows.

1. The veteran had the cognitive capacity to consent.

2. PTSD is a current problem in the veteran’s electronic health records.

3. The current mental health treatment plan included PTSD as a problem area.

4. The veteran had ≥2 sessions of a TF-EBP in the past 12 months through the outpatient general mental health clinic or PTSD speciality clinic at a VA medical center in the mid-south US (because treatment planning, including PROM selection, is required to be completed at session 2 of individual psychotherapy).

TABLE 1.

Participant Sociodemographics

Variable	Frequency (%)
Sex
Men	9 (60.0)
Women	6 (40.0)
Race
White/European American	7 (46.7)
Black/African American	5 (33.3)
Other	3 (20.0)
Ethnicity
Hispanic/Latino/a/x	3 (20.0)
Non-Hispanic	12 (80.0)
Rurality
Urban	5 (33.3)
Suburban	4 (26.7)
Rural or Country Person	6 (40.0)
Age (y)	Mean=48.9, SD=11.6, range=30–70s

Total n=15. Session completion was based on health records data. All other variables were self-reported. For 2 cases, demographics were imputed from the health record due to missing data. Participants self-identified sex, and none identified as transgender or nonbinary.

We purposively sampled women, non-White, Hispanic, and rural veterans, who completed >10 sessions (n=8) or who dropped out after <5 sessions (n=7), and TF-EBP cases representing as many distinct clinicians as possible.

Measures

We drew from our clinical experiences to phrase the initial semi-structured interview guide, (online Supplemental Appendix, Supplemental Digital Content 1, http://links.lww.com/MLR/C897). We adjusted the wording upon feedback from mock interviews with research colleagues, one of whom was a combat veteran. Consistent with Rapid Template Analysis^23,24 methods, the interview guide was revised after the first few interviews were analyzed. Quantitative survey questions covered demographics, TF-EBP type, PROM type, and administration frequency. TF-EBP session count and completion were obtained from health records data.

Procedure

These data are part of a larger, ongoing study where dyads of mental health clinicians and veterans with PTSD are interviewed separately about patient-centeredness of PTSD care. This study was approved by the Central Arkansas Veterans Healthcare System Institutional Review Board (IRB).

Eligible veterans were identified through the VA Corporate Data Warehouse (n=200), mailed opt-out invitation letters (n=68), and then called by telephone ≥10 days after the initial mailing (n=36). When selecting veterans to recruit from the eligible pool, we stratified by dropout rate and clinician, and purposively sampled veterans who were women, Hispanic or non-White, and rural, according to health records data. Consenting procedures, interviews, and a brief sociodemographic survey were conducted by telephone; veterans verbally consented to participate. Interviews, including the quantitative questions, lasted about 60 minutes. Participants received $60 each. Data collection ran from May 2, 2023, to February 13, 2024.

Data Analysis

Recordings were transcribed verbatim with identifying information redacted. Transcripts and interview notes were analyzed using Hamilton’s Rapid Template Analysis approach for health services research.^23,24 A priori domains were developed by 2 authors (M.C.W. and K.L.D.) based on the research questions and interview guide. Three authors (M.C.W., K.L.D., and A.J.) reviewed 3 transcripts to develop categories and additional domains for the summary templates. The primary analysts (M.C.W. and A.M.J.) reached 100% agreement by the third interview, so the remaining summaries were divided between them. The third analyst (K.L.D.) periodically reviewed their summaries and had 100% agreement with the coding of these later interviews. Interviews were continued until no new domains or new categories emerged for 3 cases in a row, resulting in a sample size of 15.

RESULTS

Quantitative

See Table 2. All participants reported completing ≥1 PROM during their most recent TF-EBP episode, and nearly all received the PCL-5. They reported only receiving symptom-based PROMs during their most recent TF-EBP episode.

TABLE 2.

Characteristics of the Current or Most Recent Episode of a TF-EBP

Variable	Frequency (%)
Most recent TF-EBP initiated
CPT	11 (73.3)
PE	1 (6.7)
CBT (for PTSD & comorbid conditions)	3 (20.0)
PCL-5 administered
At least once	14 (93.3)
Unsure (exact PROM unclear)	1 (6.7)
Frequency of PCL-5 administration
Every session	5 (33.3)
Every few sessions	3 (20.0)
Infrequently	5 (33.3)
Missing/unclear	2 (13.3
PCL-5 discussed with veteran
At least once	14 (93.3)
Unclear; at least one PROM discussed	1 (6.7)
TF-EBP sessions completed	Mean=11.6, SD=9.5, Range=2–33 sessions

Total n=15.

Session completion was based on health records data. TF-EBP type was imputed from the health record for 4 cases where the veteran did not recall the treatment name. All other variables were self-reported.

CBT indicates cognitive behavioral therapy; CPT, cognitive processing therapy; PCL-5, PTSD Check List for DSM-5; PE, prolonged exposure therapy; PTSD, posttraumatic stress disorder; TF-EBP, trauma-focused evidence-based psychotherapy.

Qualitative

All participant names are pseudonyms. We report findings from the following domains: veterans’ conceptualizations of the presenting problem, their experience of PTSD treatment goal-setting, specific treatment goals they set, goals they met, their experience with MBC/PROMs, and their preferences for MBC/PROMs.

Veterans’ Conceptualizations of the Presenting Problem

Conceptualizations were a mix of symptoms and functional problems. Amanda (rural, Black, 40s) said a main problem was being “paralyzed by overthinking.” Some conceptualizations included comorbid conditions; Mathew (suburban, White, 30s) said, “I used alcohol to cope” with PTSD. Josh (rural, Latino, 30s) described social isolation and withdrawal that he attributed to both PTSD and depression.

Goal-Setting

All but one veteran reported having discussed their treatment goals with their clinician. Most often, this occurred at the start of treatment. Some veterans who stayed in treatment reported collaboratively revising goals midway through treatment.

Veterans’ Own Goals

We asked veterans what their own PTSD treatment goals were, regardless of whether these were discussed with providers. Their goals fell into 5 categories, and all participants set goals in multiple categories. Thus, while symptom reduction was a goal for about half of the participants, it was never their only goal.

1. Many veterans in this sample reported goals pertaining to PTSD symptom reduction, usually specific symptoms. Decreased hypervigilance was a common goal. Lisa (suburban, White, 60s) wanted to be “less nervous in crowds.” Sarah (rural, Black, 40s) wanted “more sleep.”

2. Another common category was improving psychosocial functioning, particularly relationship functioning. Michael (urban, Latino, 40s) set a goal to “improve my relationship with my wife and daughter.” Danny (urban, White, 40s) set the goal “for my wife and I [to] go out to concerts and events more, … to dinner, or going out with friends.”

3. Many veterans in this sample set coping skills goals, such as being able to cope with symptoms better, respond more effectively to triggers, or learn ways to manage their worst symptoms. James (suburban, Black, 50s) set goals to “better manage PTSD” and “learn to cope with triggers.” Shonda (urban, Black, 40s) wanted to “learn how to cope.”

4. Some veterans in this sample set goals about increasing wellbeing, such as “being more patient and calm” (David, rural, White, 60s) or “regaining a sense of self-worth” (Jennifer, rural, White, 50s). Several goals encompassed both symptom reduction and improved wellbeing; Amanda (rural, Black, 40s) wanted to “be able to enjoy things again.” Danny not only wanted to attend more social events with his wife (a functional goal), but also “to feel more comfortable” at those events.

5. Some veterans in this sample set goals around making sense of trauma, or better understanding their trauma and themselves, which overlaps with wellbeing concepts of meaning-making and posttraumatic growth, and with cognitive processing as a coping skill. John (urban, White, 50s) wanted to “understand how my trauma and experiences were affecting me.”

Progress Made Toward Treatment Goals

Some veterans in the study met all their goals and most veterans at least partially met some goals. Commonly, they met functional and coping skills goals while symptom reduction and/or wellbeing goals were unmet. Michael explained that, because of therapy, “[now] I can go food shopping” for several hours, so “it takes longer for me to feel anxious or stress[ed].” Brianna made concrete functional progress, saying she is now “able to enjoy my shopping experience instead of going in … and getting out.” David shared how, before therapy, he “didn’t want to love anybody” and “didn’t want anybody to love me.” Because of therapy, he said, “I cherish my family now.” While he still sometimes socially withdraws, he viewed this improved family functioning as progress. Several veterans said the goals they set were long-term, so their intermediate progress toward those goals was a satisfactory treatment outcome.

Patient-Reported Outcomes Measures (PROMs)

See also quantitative findings and Table 2. Most veterans in this study understood that PROMs were being used to detect changes in symptoms and progress toward symptom reduction. Lisa expressed that she knows her clinician “judges how I am doing with [PROMs], but not exactly how [that works].” Many thought the PROMs were used to determine whether treatment was working; few understood that their purpose was also to facilitate treatment adjustments as needed. Those who did understand that PROMs were intended “to measure my progress and to adjust therapy” (Mathew) also reported that the clinician discussed their scores regularly.

Veteran Preferences for PROMs

Symptom-Focused PROMs

Across the sample, veterans were in favor of completing and discussing PROMs with their individual therapists, but many disliked that they were symptom-focused. Some said that, especially at the start of treatment, merely completing the PCL-5 was triggering, such that it “felt like having sandpaper being rubbed on you” (Michael). Others felt it reinforced their negative beliefs because the questions are written “from the perspective of staying stuck … let’s just see how much of a piece of crap I am” (Josh). Others felt worse after completing them because their scores were not decreasing (ie, symptoms were not improving). Veteran participants who did not have symptom-related goals said that the PCL-5 did not align with their goals or did not seem personalized to them.

Several veterans were aware that the PCL-5 was used by their health care team and/or in VA operations; feelings about its system-level use varied by veteran. Jennifer viewed the PCL-5 as ineffective for systemic improvements, saying, “they’ve been using all of these assessments on veterans day in and day out, but the veteran suicide rate hasn’t dropped.” Several believed that the PCL-5 was VA-mandated and that the clinician was not permitted to select a different PROM.

PROMs in General

Reasons veterans were in favor of MBC included that they liked reviewing progress regularly, which gave them “little wins” along the way (Michael). Some also specifically liked having their progress quantified in a way that could be compared over time.

Nonquestionnaire Outcomes

It was common for veterans in this study to view their progress in terms of self-observed cognitive or behavioral change rather than based on PROM scores. For David, getting in fewer fights was a sign of his progress. Christopher (rural, White, 50s) knew he was getting better when he had fewer suicidal thoughts. Many veterans viewed progress through their TF-EBP workbook as progress in treatment.

Preferences for PROM Topics

Most veterans we interviewed suggested multiple PROM topics they would prefer in PTSD care. Many wanted questionnaires to be about specific symptoms/clusters that were central to their goals (eg, hyperarousal). Others preferred questionnaires about functional outcomes (eg, family functioning). Some wanted PROMs addressing wellbeing or coping skills. Veterans whose goals involved better understanding themselves or the trauma preferred PROMs about the underlying causes or reasons for their symptoms. For example, James wanted a PROM that accounted for past-week stressor exposure to put symptom severity in context. Danny suggested a simple Likert-type scale for goal progress similar to “the chart where the smiley faces are for the pain” he had experienced in primary care.

DISCUSSION

Most veterans in this study had multiple goals spanning symptom reduction, functioning, building coping skills, psychological wellbeing, and/or making sense of the trauma and better understanding themselves. Despite the wide range of goals, none of the participants reported completing a questionnaire aligned with non–symptom-focused goals. This is consistent with the population-level mental health records data showing nearly all PROMs administered in VA mental health care are symptom-focused.¹⁸

Whether goals and PROMs were symptom-focused or not, veterans in this study wanted their PTSD care to be personalized. Further, the outcomes most important to them were not necessarily well-assessed in usual care, so they wanted more personalized PROMs. It appears that using more generic outcomes assessments, whether they are about symptoms, wellbeing, or another outcome, may reduce the ability to identify meaningful improvements in areas the veteran is particularly focused on. Similarly, VA mental health clinicians have voiced concerns about the utility of MBC when PROMs are too generic.¹⁴ Generally, veterans were receptive to participating in MBC, including completing questionnaires. Overall, the aspects participants liked about MBC, such as it helps them note and celebrate intermediate progress, were not specific to symptom-focused PROMs. Participants were interested in a wider variety of PROM topics that aligned with a wider variety of goals. Therefore, we situate our findings into recommendations for each goal/PROM category.

Symptom Reduction Goals and Outcomes

For about half of the participants, at least one goal involved symptom reduction, similar to prior research.^10,11 Many veterans wanted PROMs to focus on specific symptoms/clusters rather than broadly measuring PTSD. Thus, even when veterans have symptom-focused goals, more specific symptom-focused PROMs may be needed. MBC guidelines rightly specify that items and subscales should not be interpreted in isolation, unless the item or subscale has its own established psychometrics, which poses a challenge to tailoring PROMs for veterans who want to focus on specific symptoms/clusters. More research is needed to develop symptom-specific or cluster-specific scales and validate their utility as PTSD PROMs. For example, a scale of posttraumatic cognitions^25,26 has potential as a cluster-specific PROM. About half of the veterans we interviewed were frustrated by the disconnect between the PCL-5 and their own goals or anticipated outcomes of TF-EBP treatment; for such veterans, it is even more important that MBC involve nonsymptom PROMs.

Functional Improvement and Coping Skills

While no veteran reported fully meeting their symptom reduction goals, many met their goals of building coping skills or improving functioning. We had not expected this finding, that veterans we interviewed would have met functioning and coping skills goals more than symptom reduction goals. It may be that symptom scores are not dropping while veterans challenge themselves to endure increasingly difficult exposures. Michael exemplified this when he described going grocery shopping (an avoided trauma reminder) for many more hours before becoming distressed; his functioning improved while his distress did not decrease. Another reason may be that the functional goals veterans set and met were typically concrete, short-term goals (eg, attending avoided social events). Prior research corroborates that significant improvements to quality of life typically co-occur alongside decreased symptoms, even if long-term quality of life goals are not yet met.²⁷ Many veterans also experience high functioning alongside clinically significant symptoms.²⁸ It appears that participants perceived their functioning meaningfully improved before they perceived their symptoms meaningfully improved (although further improvement in both functioning and symptom reduction would likely benefit them).

Because veteran participants tended to meet functioning and coping skills goals more than symptom reduction goals, symptom measures may not capture most of their progress toward their goals (even for those veterans with symptom reduction goals). Given that veterans in our study were generally receptive to using PROMs, a focus on functional and coping skills PROMs could allow veterans and providers to observe more progress, even while symptoms persist. Increased use of functional and coping skills PROMs in PTSD care would be consistent with VA’s approach to substance use care, where the primary PROM is about healthy coping with addiction²⁹ and symptom scales are mainly used for screening.

Understanding the Trauma

While making sense of the trauma was a common goal, no veterans we interviewed mentioned wanting PROMs about this. Rather, they wanted PROMs about mechanisms underlying their symptoms. It may also be that they did not think making sense of the trauma was a PROM option; interviewers had to remind some participants they were being asked about any topic they preferred, whether or not a PROM was presently available.

Wellbeing

Like symptom reduction goals, participants’ wellbeing goals were not as fully met as their functioning and coping skills goals. This may be because some goals set at the start of treatment were imprecise, like “feel better” (David). Because some veterans described these as long-term goals and felt satisfied with their intermediate progress, there may be a need to facilitate short-term wellbeing goal-setting with veterans. Perhaps even more than for other goals, these more holistic wellbeing goals would align with PROMs that could be used across a variety of care settings.

Recommendations

Foremost, clinicians should utilize the wellbeing, coping skills, and functioning PROMs presently available in their settings. Nonsymptom PROMs may be useful for any case where symptom reduction is minimal. We recommend delivering goal-aligned, nonsymptom PROMs at least once at the start of treatment, then periodically as applicable. Veterans typically set multiple treatment goals, and it is not necessarily feasible, nor is it necessarily the veterans’ preference, to complete PROMs related to every single goal. Clinicians and veterans should collaboratively select PROMs that align with the veterans’ top priorities.

On the system level, we recommend improving the availability of functional, coping skills, and wellbeing PROMs in the software programs used by VA to support MBC. Another system-level change pertains to the possible veteran-clinician disconnect about the purpose of MBC. Few veterans in this study knew PROMs inform treatment adjustments. MBC implementation may be incomplete in the clinics where this study took place and in other similar care settings.

Future Directions

Partner-engaged research is needed to integrate goal-aligned measures into MBC software. To support the uptake and sustained use of patient-centered PROMs, there is a need to examine barriers and facilitators to the implementation of personalized, patient-centered MBC in VA PTSD care. Future studies should explore highest priority goals and short-term versus long-term goals, then which PROMs align with these goals. Prior research comparing veterans who dropped out versus completed TF-EBPs highlighted the importance of patient-centered care⁷; even so, additional research with larger samples is needed to compare PROM preferences and treatment goals by TF-EBP (in)completion. Future studies should explore what PROMs are the best fit for veterans whose goals include wanting to make sense of the trauma. Psychometric support is needed for PROMs for specific PTSD symptoms and symptom clusters. Quantitative research documenting the relevance of this study’s findings for the larger population is also needed.

Limitations

The sample was drawn from a single, predominantly rural VA medical center. Due to purposive sampling of minoritized veterans, the sample does not represent the catchment area veteran population, which is predominantly White men. Participants receiving prolonged exposure therapy were underrepresented. Findings may not generalize to the larger population of minoritized or majority-group veterans. For generalizability, further research is needed with diverse patient populations, to understand veteran experiences and preferences are in other parts of the country, in other clinical settings (eg, residential, primary care), with veterans enrolled in PE, with veterans of color, and with women and gender minorities.

SUMMARY CONCLUSION

This qualitative study explored veterans’ experiences and preferences for aligning measurement-based PTSD care with their own treatment goals. Veterans in this study had a wide range of treatment goals and met functional and coping skills goals more so than symptom reduction goals. They were generally receptive to MBC but preferred PROMs beyond the PCL-5. Further research is needed to examine the potential implementation of validated measures of functioning, coping and wellbeing PROMs that align with veterans’ goal topics.