Is screening for distress still relevant?

Implementation of screening for distress can be challenging and may be unsuccessful. Indeed, several problems may be encountered by the oncology management team that sets up the program (Donovan et al., Reference Donovan, Grassi and Deshields2020). Although screening for distress is recognized as a standard of care (Bultz et al., Reference Bultz, Watson and Loscalzo2021), experts have recently argued that the implementation of distress screening should be improved (Dekker et al., Reference Dekker, Graves and Badger2020). But how to do so remains an unanswered question. Sustainability of the distress screening practice is also a long-term challenge yet is critically important. Initial screening efforts from professionals might be impeded after some time if no clear benefits for patients are observed. In fact, a recent study revealed that sustainability might potentially be enhanced by formally integrating distress screening with existing practices and ensuring the engagement of all stakeholders (Groff et al., Reference Groff, Holroyd-Leduc and White2018).

Screening for distress implementation remains very relevant as these programs have been shown to significantly improve the general outcomes for cancer patients and healthcare systems (Bultz et al., Reference Bultz, Watson and Loscalzo2021). Being attentive to our patients’ emotional distress in cancer care and offering psychosocial care when needed has been beneficial for patients and their loved ones, as well as for the health care systems (Faller et al., Reference Faller, Schuler and Richard2013; Ng et al., Reference Ng, Gallaway and Huang2021). Although psychosocial interventions are effective, a significant proportion of distressed cancer patients do not receive these interventions, because they do not have access to it or because they decline assistance.

Screening for distress has been associated with better quality of life, lower direct and indirect costs of care, less morbidity, better satisfaction with received care, and both improved symptom management and adherence to treatment (Diplock et al., Reference Diplock, McGarragle and Mueller2019). Not addressing cancer patients with persistent distress can constitute a risk for them, as well as to their loved ones. It can also significantly alter their quality of life. Such programs are not only an effective way to better identify those patients with significant distress during their cancer trajectory, but they can also help patients access adequate comprehensive care and also facilitate patient engagement and active participation in their cancer journey (Bultz et al., Reference Bultz, Watson and Loscalzo2021). Such programs can calibrate access to psychosocial care depending on the severity and type of distress(Howell et al., Reference Howell, Keshavarz and Esplen2015).

Barriers: What makes implementation difficult?

Implementing screening for distress stimulates a change in practice, which generally involves facing challenges and using efficient strategies to overcome them (Ercolano et al., Reference Ercolano, Hoffman and Tan2018). Over the years, experts, researchers, and patients have identified barriers at multiple levels, which may be from institutions, clinicians, and even patients themselves. Knies and colleagues reported that the most common institutional barriers to screening included: lack of staff, competing demands, and staff turnover (Knies et al., Reference Knies, Jutagir and Ercolano2019). Institutions may underestimate the support and time necessary to plan such change, especially for high-capacity cancer centers where change might take some time and relies on an integrated team effort. In fact, even small pockets of resistance within front-line clinicians can prevent successful systematic implementation. Also, perceived burden has been considered to be a significant barrier for clinicians. Oncology staff have reported in the past feeling overloaded with their routine tasks and perceive this change in practice as an additional burden. Lack of training and support on psychosocial issues, the fear of inadequate response to patients’ distress, as well as the failure to offer appropriate resources and help, have been documented in healthcare professionals (Mitchell, Reference Mitchell2013; Ercolano et al., Reference Ercolano, Hoffman and Tan2018; Knies et al., Reference Knies, Jutagir and Ercolano2019; Arnold et al., Reference Arnold, Halkett and Dhillon2021). Even when distress screening becomes part of routine cancer care, some barriers persist and need to be addressed on a long-term basis in order to monitor compliance (Pereira et al., Reference Pereira, Chasen and Molloy2016).

From the point of view of patients, some might be hesitant or non-adherent with the demands of screening with multiple questionnaires. They might also be embarrassed to reveal their distress as they might think that the health system will not easily offer mental health services to address their distress. Notably, in a recent Canadian study conducted among head and neck cancer patients, usually known for high levels of distress, only 50% who screened positive for distress accepted psychosocial oncology referral (Cohen et al., Reference Cohen, Ianovski and Frenkiel2018).

Facilitators: What is next after unsuccessful implementation?

Implementation success depends upon many variables, such as accuracy of the screening method, acceptability of the practice, and high-quality follow-up care offered after screening. Adherence to the training program seems to be one of the most potent facilitators, while at the institutional level facilitators are “buy-in,” “institutional support,” and “recognition of participants’ expertise” (Knies et al., Reference Knies, Jutagir and Ercolano2019). In Canada, lessons learned from recent successful implementations revealed that key components are essential for success, including an effective change management strategy, leadership, integration, customization, project management, and program evaluation (Fitch et al., Reference Fitch, Ashbury and Nicoll2018). Jacobsen and Norton have also reported that indicator measurement and analysis of progression during the implementation process are necessary (Jacobsen and Norton, Reference Jacobsen and Norton2019).

Implementation of interdisciplinary collaboration with clinicians specialized in distress detection is an important supporting factor (Ehlers et al., Reference Ehlers, Davis and Bluethmann2019). Studies have also reported that the introduction of electronic data collection appears to be a game changer in screening for distress adherence since it is less time-consuming for patients and healthcare practitioners (Ehlers et al., Reference Ehlers, Davis and Bluethmann2019). Clinicians’ adherence to new time-saving technology is, on the other hand, not guaranteed, since adaptation to changing practice takes time and can require significant institutional technology resources, both factors under study (Butow et al., Reference Butow, Shaw and Shepherd2018). eHealth system-based screening has some limitations and is still being studied (Girgis et al., Reference Girgis, Durcinoska and Gerges2018). There is still a significant proportion of patients who are not familiar with computers and/or lack internet access (Mattsson et al., Reference Mattsson, Olsson and Carlsson2019). Other patients may fear confidentiality breeches. The participation of patients as partners has also been considered another potential innovative strategy (Rivest et al., Reference Rivest, Desbeaumes Jodoin and Leboeuf2020). Telephone-based screening seems to be a good option for distress screening (Taylor et al., Reference Taylor, Fradgley and Clinton-McHarg2020), as multiple and long online questionnaires might discourage patients using them or have limited value with patients who have limited literacy, cognitive limitations, or impaired vision.

Even with the best intentions and use of optimal implementation strategies, distress screening programs sometimes fail or remain only partially used in a cancer care settings. Some researchers have recently become interested in studying how to overcome those barriers (Fradgley et al., Reference Fradgley, Byrnes and McCarter2020). What conclusion might an institution come to when implementation is unsuccessful? Although local contexts vary, motivating healthcare professionals and other stakeholders for a second try might seem to be the best solution, even if it often appears unachievable. On the other hand, avoiding continuous quality improvement does not appear an ethically acceptable position. Patients with cancer also deserve adequate mental health care that meets the highest standards of care. Despite the growing data on effective strategies and implantation facilitators, there remains little data on what are the key measures essential for the implementation strategy and what are the best predictors of program implementation success (McCarter et al., Reference McCarter, Britton and Baker2018, Reference McCarter, Fradgley and Britton2020). All these questions remain unanswered and should warrant more research.