Willingness toward psychosocial support during cancer treatment: a critical yet challenging construct in psychosocial care

Abstract

Psychosocial distress screening, mandated by the American College Surgeons’ Commission on Cancer, continues to be implemented across cancer centers nationwide. Although measuring distress is critical to identifying patients who may benefit from additional support, several studies suggest that distress screening may not actually increase patients’ utilization of psychosocial services. While various investigators have identified barriers that may impede effective implementation of distress screening, we posit that patients’ intrinsic motivation, which we term patients’ willingness, may be the biggest predictor for whether cancer patients choose to engage with psychosocial services. In this commentary, we define patient willingness towards psychosocial services as a novel construct, distinct from the intention toward a certain behavior described across pre-existing models of health behavior change. Further, we offer a critical perspective of models of intervention design that focus on acceptability and feasibility as preliminary outcomes thought to encompass the willingness construct described herein. Finally, we summarize several health service models that successfully integrate psychosocial services alongside routine oncology care. Overall, we present an innovative model that acknowledges barriers and facilitators and underscores the critical role of willingness in health behavior change. Consideration of patients’ willingness toward psychosocial care will move the field of psychosocial oncology forward in clinical practice, policy initiatives, and study design.

We argue that patient’ intrinsic motivation and willingness to engage with psychosocial support while undergoing routine cancer treatment is one of the most important, yet understudied, constructs in explaining low use of psychosocial support in oncology.

INTRODUCTION

Cancer and its associated treatment can lead to psychological distress, ranging from general distress to meeting full criteria for a mental health disorder [1]. In 2007 the International Psycho-Oncology Society established distress as the sixth vital sign [2], and in 2015 the American College of Surgeons’ Commission on Cancer mandated psychosocial distress screening in all its accredited cancer centers [3, 4]. This standard encourages that a validated instrument, such as the Distress Thermometer [5], be administered during a patients’ first course of oncologic treatment as a measure of patients’ psychosocial distress levels [6].

Despite its intention to proactively identify patients in need of psychosocial support, a growing body of literature suggests that distress screening may not actually increase the uptake of psychosocial services [7–9]. In fact, cancer patients experiencing higher levels of distress are less likely to accept psychosocial support [10–12]. Indeed, while the prevalence of heightened distress among cancer patients may be 25–50% [13–15], only a small minority actually pursue psychosocial support [16]. While estimates suggest that 68–72% of patients undergoing active treatment are aware of available psychosocial services, only 7% utilized these services and just 20% express intention to explore such services in the future [17]. Similarly, many cancer patients express interest in group interventions; however, only 8% actually participate [18]. Lastly, in adult cancer survivors, as few as 4% of patients used psychosocial services throughout treatment and just 45% discussed psychosocial support with their providers at all [19]. Although psychosocial interventions are highly effective at mitigating distress in cancer [20–22], these statistics emphasize the underutilization of such interventions [23]. Thus, connecting distress screening with appropriate evidence-based treatment remains a significant gap in the delivery of psychosocial care in oncology.

While several investigators have identified barriers to successfully implementing distress screening and in turn increasing the uptake of psychosocial services [6, 20], we posit that the aforementioned findings beg a different question: how interested are patients in receiving psychosocial support concurrent with their oncology care? Authors in this journal have also identified the significant gap between distress screening and associated referrals in oncology, arguing that changes to the administration of distress screening is not enough. Rather, these authors draw a similar conclusion that improving screening will continue to fall short as, “many patients with cancer are unwilling to accept a referral for psychosocial care and [they] believe that this is due to a mismatch between patient needs and the provision of care”. In addition to a compelling argument focused on an increased match between patients’ needs (e.g., different emotional needs) and the oncology team’s response (e.g., referral process), the authors identify patient willingness to accept a referral as critical to effective distress screening [24]. Herein, we focus on this construct of willingness, however it has also been referred to as openness towards [25], motivation [26], or readiness [16] to engage in the literature.

Partly due to the challenge of measuring willingness with patients that may not meet with psychosocial clinicians or participate in related research studies, researchers have instead used proxy measurements of willingness across their research designs or targeted individual and system-level barriers. Yet little research has examined cancer patients’ willingness and its relationship to the uptake of psychosocial services. In the following commentary, we explore how willingness is defined across various studies as well as intervention development models, discuss insights about barriers and facilitators to psychosocial care, and assert that individual willingness is perhaps the most important predictor as to whether cancer patients engage with psychosocial care.

DEFINING WILLINGNESS

Theory and measurement

Individual motivation to engage in psychosocial support is addressed across several models of health behavior change. Dominant evidence-based theories include, the Theory of Reasoned Action [27], Theory of Planned Behavior [28], the Transtheoretical Model (TTM) [16], and Theory of Self-Regulation [29], with each, broadly speaking, making the distinction between intention to conduct a behavior and follow-through. However, two contemporary models underscore how critical intrinsic motivation or willingness is to predicting health behavior. First, Gibbons et al. created the Prototype/Willingness Model, which identifies how pre-existing models fall short in addressing the non-reasoned, or rational, spontaneous instances in which “the right set of circumstances” align to increase an individual’s likelihood of conducting a behavior [30, 31]. Importantly, this model differentiates willingness from intention, which has been generally defined as a goal, or “goal state, formulated after deliberation or reasoning” (left side of Fig. 1) [30, 31]. While intention and willingness are certainly similar and highly related, several studies exploring risk behavior have all demonstrated that measuring willingness, as a distinct construct, increases the predictive validity of intention [30, 31, 33, 34].

Second, Mitche et al. [26] created the COM-B system to improve the implementation of behavior change interventions. The COM-B system of behavior change [26, 35] addresses three essential conditions: capability (C), opportunity (O), and motivation (M), all of which interact and influence the likelihood of a certain behavior. In this model, capability encompasses the individuals psychosocial and physical ability to enact the specific behavior. Opportunity considers system wide factors that may influence the likelihood of a behavior, while motivation is grounded in cognitive processes, both reflective (e.g., making plans, which overlaps significantly with intention) and automatic (e.g., desires, impulses etc), that lead to a behavior. While this model has been widely applied to behaviors such as alcohol use [36] and smoking cessation [32, 37], among others, few investigators have utilized the COM-B to assess mental-health seeking behavior. Preliminary work has applied the COM-B as an effective framework for engaging healthy males in psychosocial services [38], who typically underuse these services.

In oncology, the COM-B provided a framework that identified patients’ willingness to engage in medication re-dispensing [39], and for promoting physical activity among patients with head and neck cancer [40]. Of note, physical capability/opportunity and automatic motivation were particularly important facilitators and barriers to exercise. In considering individual motivation (or willingness) toward psychosocial support in oncology, opportunity is likely less relevant as psychosocial support is ideally offered concurrently with oncology treatment [41, 42] and, similarly, capability likely less physical exertion (meeting with a psychosocial provider requires little physical ability), but may include elements of psychological capability such as stigma (discussed under barriers below). Taken together, the motivation construct outlined by the COM-B significantly overlaps with our conceptualization of willingness and, in our assessment, remains the predominant contributor to whether patients follow-through with a psychosocial referral in oncology.

Within oncology, the distinction between patient intention and willingness may be best described by a patient example. Perhaps a patient has no intention to seek psychosocial support prior to being diagnosed with cancer. However, after diagnosis they may develop a tight knit relationship with their oncologist who encourages them to enroll in a psychosocial clinical trial. Conversely, prior to being diagnosed with cancer another patient may have the intention to explore psychosocial support in the future, however after being diagnosed with cancer they may become so overwhelmed with their circumstances that beginning a therapeutic relationship may feel too daunting. While both patients’ original intention would not have predicted their engagement with psychosocial services, their willingness in the moment (or automatic motivation [26])—and the right set of circumstances (e.g., an ongoing trial) [30]—strongly influenced their pursuit of psychosocial support. Although the aforementioned models have been widely applied to predicting health behavior outside of oncology, we propose a model that recognizes the paramount role of willingness in psychosocial oncology and situates this construct between intention and follow-through (Fig. 1).

Fig 1.

Figure presents an innovative model that acknowledges the central role of patient willingness to accept psychosocial referrals in oncology, which significantly overlaps with “motivation” in the COM-B model of behavior [32]. Large grey bars delineate general commonalities in dominant applied models of behavior change (e.g., connecting intention to follow-through). The smaller transparent bar with an asterisk designates the parallel process of patient willingness and intention as explained by the Prototype/Willingness Model, which describes how patient willingness and the “right set of circumstances” lead to a behavior, in this case following up on referral to psychosocial support [27, 33]. This figure also acknowledges barriers and facilitators and their role in influencing patients’ follow-through with psychosocial services. Other models discuss the dynamic process of intention changing over time [33]; however, we have attempted to distill this conceptualization into one epoch of time for clinical applicability, starting with distress screening on the left side of the figure.

In order to conceptualize willingness as a construct, it is worth briefly reviewing efforts towards measurement. Preliminary research in psycho-oncology led to the development of the Attitudes to Seeking Help after Cancer Scale, which utilized the Theory of Planned Behavior to assess help seeking behavior [43, 44]. This scale posits that cancer patients’ attitudes about psychosocial services are critical predictors of their intention to pursue psychosocial support. To our knowledge, this scale is one of the first validated across a range of oncologic populations [43–45]. Additionally, our team created a scale based on the TTM to capture patients’ readiness for change and confidence in psychosocial support during cancer treatment [16]. We then examined patients’ reported pros and cons of engaging in psychosocial care, finding that non-White individuals and those with multiple cancers identified greater cons of psychosocial support [46]. Interestingly, self-efficacy was not related to these demographic or treatment factors, despite being a critical factor in behavior change [47], further highlighting that we have much to learn about patient willingness. Additionally, while not validated in oncology, a brief measure of capabilities, opportunities, and motivations was validated in a population of health care professionals and a sample of individuals of low socio-economic status [48]. Taken together, two tools have been validated in oncology that highlight how important the internal processes are in patient follow-through with psychosocial services and a brief measures that captures motivation and applies contemporary models of behavior change, such as the COM-B Instrument, should be validated further. Clinicians and researchers would benefit from implementing these instruments and in turn improving our ability to capture patient willingness.

DEFINING WILLINGNESS

Differentiating willingness from models of intervention development

In research studies, much of our conceptualization of cancer patients’ willingness toward psychosocial support comes from models of intervention development where investigators measure feasibility (e.g., can this intervention be carried out?) and acceptability (e.g., how will this intervention be received by the target population?) [49]. For instance, the National Institute of Health’s (NIH) Obesity-Related Behavioral Intervention Trials model underscores the critical role of feasibility studies in optimizing interventions by assessing the target populations’ interest through measuring acceptability and adaptation [50]. Similarly, the NIH Stage Model recognizes efficacy and feasibility studies as vital to intervention design and dissemination, but include the perspective that efficacy studies should be completed in (and by) the community of interest to parallel routine care as closely as possible [51].

While incredibly important in a shared framework for intervention design, within the context of psycho-oncology, these models equate patients’ agreement to participate in a research study to willingness to seek psychosocial care. This is to say these models assume that the question, “would you be willing to participate in a study examining psychosocial support?” is synonymous with “do you want extra psychosocial support during your treatment?” To our knowledge, few investigators have measured why patients may be willing to participate in specific clinical trials, which is problematic as dropout rates are typically much higher in routine care versus during clinical trials [52, 53]. In fact, a comparison of engagement in psychosocial clinical trials and routine care demonstrated that while participants in clinical trials complete on average 12.7 sessions, in a naturalistic setting patients tend to complete less than five [52]. This highlights the vast difference between patients’ acceptability of psychosocial interventions in a research setting and their intrinsic motivation to pursue psychosocial support during routine oncology care, further highlighting the importance of increased attention to measuring patients’ willingness (possibly with the aforementioned instruments).

We identified one hallmark review that assessed cancer patients’ willingness (termed “participation and commitment”) within psychosocial clinical trials. Across 42 studies, this review agreed with our assertion that while many studies focus on intervention design, few examine the precipitating factors that influence patients’ engagement with psychosocial interventions in oncology [54]. The authors extracted several proxy measurements of patient willingness in psychosocial trials including participants’ needs, preferences, reasons to participate or decline, adherence, and satisfaction. In sum, this scoping review paralleled our call for further examination of the factors influencing participants’ willingness to engage in psychosocial services and provided potential proxy measurements that researchers may report in addition to acceptability, feasibility, and efficacy outcomes.

BARRIERS AND FACILITATORS TO WILLINGNESS AND UPTAKE OF PSYCHOSOCIAL SERVICES

Due to the challenges of measuring patients’ willingness described herein, many researchers have instead defined various facilitators that can influence cancer patients’ receptivity towards and uptake of psychosocial services. What do we know about the predictors of patients’ engagement with psychosocial services? Cancer patients who are White and have had prior discussions with a provider about psychosocial concerns were predictors of their openness towards psychosocial services [23, 55]. Similarly, past positive experiences with mental health care providers, positive attitudes about support, and a desire to improve coping also predicted patients’ engagement with psychosocial services [43, 50, 56]. Finally, patients may be more likely to accept services over the phone and by nurses [57], highlighting the importance of the mode of delivery and type of practitioner providing support. (Identified facilitators in psychosocial oncology are listed at the top of Fig. 1, with green light background).

Conversely, investigators have also measured barriers that may impede patients from pursuing psychosocial services. As we previously described, the CoC’s mandate for distress screening has not led to an increase in the uptake of psychosocial services in this population [10–12]. Why might this be? On an individual level—as we have discussed—patients’ distress levels can be a barrier to their engagement with psychosocial services, with highly distressed patients being more likely to decline psychosocial services [10–12]. Additionally, patients may desire to manage their own distress or receive support outside of an oncology setting (e.g., private therapy or family support) [43]. Further, patients’ fears, uncertainty about psychosocial services, and stigma may be prominent barriers to their willingness [10, 58]. Indeed, stigma is a significant contributor, with patients concerned about loved ones finding out or discouraging such support [10, 48]. Lastly, individual factors including older age, male sex, and being non-White are negatively related to patients’ motivation to pursuing psychosocial services [23, 59, 60]. (Identified barriers in psychosocial oncology are listed at the bottom of Fig. 1, with red stop sign background). Such individual characteristics should guide clinical approaches to increasing engagement with psychosocial support, ideally increasing relevant facilitators (e.g., discussing attitudes toward supportive services, inquiring about preferred modes of care delivery) and decreasing barriers (e.g., normalizing support as part of oncology care to decrease stigma, increasing attention to these discussions for certain demographic groups).

HEALTH SERVICE MODELS TO INCREASE UPTAKE

As highlighted in prior work, oncology teams’ motivation, capability, and opportunity to refer patients to psychosocial services may partially explain why referrals to psychosocial services remain low [61]. Therefore, comment on models to improve the integration of psychosocial services is deserved. In many ways, primary care has developed health service models to bridge the gap between medical and mental health care [62]. For instance, collocation integrates mental health and primary care providers within the same office, to streamline patient access to services, and to encourage the “warm hand-off”, in which the referring provider introduces their patient to the mental health provider [63]. This model acknowledges that reducing hospital-level barriers to psychosocial services may in turn increase patients’ willingness and uptake. Similarly, the Collaborative Care Model (CoCM) extends beyond just collocating psychosocial and medical providers in the same setting and emphasizes the importance of consistent discussion and collaboration across medical and mental health disciplines [64]. This evidenced-based model has positively impacted clinical outcomes and quality of life across a variety of non-oncologic chronic health conditions (e.g., congestive heart failure, diabetes, and asthma) [65].

Could a similar integrative model of psychosocial support be effective within the context of oncology? It is possible that these integrative models could be instrumental in oncology, especially as referral rates by oncologists—even for patients who express interest in more support—are consistently low [66]. Even including an automated statement regarding patients’ psychosocial distress levels in discharge planning documents did not increase conversation about or referrals to psychosocial services [67]. This assertion is further paralleled by work conducted by Carlson et al. [68], which identified several implementation factors that present as prominent barriers to connecting distress screening with the uptake of services. Cumulatively, these findings emphasize a major gap in communication between medical and mental health professionals within oncology and, importantly, further underscore the fact that patients’ willingness may be even more critical as it requires motivation to overcome these pre-existing barriers. Although colocation and the CoCM are not yet widely implemented in oncology, preliminary work suggests that 80–100% of oncologic providers agree that the CoCM improved clinical outcomes, patient satisfaction, and efficient access to psychosocial care [69, 70]. Improved integration of psychosocial support as standard of care in oncology may increase patients’ willingness to follow-through on referrals.

On a practice setting-level, we acknowledge that many factors including access, availability, and cost of services can influence patients’ willingness to engage with psychosocial services [71]. In the language of the PWM, patients may seek psychosocial support under the right set of circumstances [30]. As such, we stress the importance of implementing a more direct approach to connecting cancer patients with psychosocial services. For example, there is a difference between medical providers suggesting that cancer patients meet with a mental health practitioner and providers stating upfront that in order to address the psychosocial components of cancer, an initial introduction to a mental health provider will be made at their next appointment. Addressing patients’ individual motivation through an evidence-based approach, such as motivation interviewing (MI) may be effective at addressing patient willingness [72]. Within oncology, MI effectively improves lifestyle behaviors such as smoking cessation and fatigue management [73] and adherence to exercise [74, 75]. As such, MI may hold promise for clinicians to increase patients’ willingness to follow-through on psychosocial referrals but, to our knowledge, has not been rigorously tested.

CONCLUSIONS

We have asserted that patients’ willingness is a critical, yet overlooked, construct in our understanding of why distressed cancer patients do not engage in psychosocial support and that willingness may fill the gap between patient intention and follow-through in pre-existing models of health behavior change. While difficult to measure, we argue that willingness toward psychosocial support is distinct from current markers of acceptability/feasibility in a research setting and we have highlighted emerging instruments that capture this important construct. Although significant effort has been put toward service models that decrease barriers [59, 60], and preliminary work has applied models of health behavior to identifying patients’ interest in support [16, 43], much more is needed to further bridge the gap between mental health and oncology care. Just as we cannot research medical breakthroughs without considering their implementation, we too cannot assume that increased evidence of the efficacy of psychosocial interventions will lead to increased adoption. Without an agreed upon measure of willingness and increased attention to individual motivation, we fail to target novel strategies of patient engagement in psychosocial oncology and will continue to fall short of providing cancer patients with evidence-based psychosocial support.

Funding

This study was not funded by any grants.

Compliance with Ethical Standards

Conflicts of Interest: Tamar Parmet, Miryam Yusufov, William F. Pirl, Daniel D. Matlock and Timothy S. Sannes declare no conflicts of interest. Ilana M. Braun participates in research that is in small part funded through a structured research agreement between Brigham and Women’s Hospital and Cannex Scientific. Ilana M. Braun also receives an honorarium from Elimu Informatics.

Human Rights: This article does not contain any studies with human participants performed by any of the authors.

Informed Consent: This article does not involve human participants and informed consent was therefore not required.

Welfare of Animals: This article does not contain any studies with animals performed by any of the authors.