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LIVING WITH CANCER AND THE CONSEQUENCES OF TREATMENT: Edited by Lynn Calman and Natasha Campling

Not seeing the forest for the trees: a systematic review of comprehensive distress management programs and implementation strategies

McCarter, Kristena,b,c,d,∗; Fradgley, Elizabeth A.a,b,c,d,∗; Britton, Bena,b,c,d,e; Tait, Jordana,d; Paul, Christinea,b,c,d

Author Information
Current Opinion in Supportive and Palliative Care: September 2020 - Volume 14 - Issue 3 - p 220-231
doi: 10.1097/SPC.0000000000000513
  • Open

Abstract

INTRODUCTION

Prevalence and impact of clinically significant distress for patients with cancer

Distress is an unpleasant emotional experience of a psychological, social, spiritual, and/or physical nature that interferes with the ability to cope effectively with cancer, its symptoms and treatment [1]. Approximately 52% of patients with cancer experience clinically significant distress [2]. Undetected or untreated distress in patients with cancer is associated with adverse outcomes ranging from reduced well being and quality of life (QOL [3–6]) to overall survival [7]. 

Box 1
Box 1:
no caption available

Basic components of distress screening and management pathways

Guidelines recommend distress screening and referral to supportive care services [4,8–14]. The minimum pathway components include: initial screening with a validated tool, further assessment to confirm the presence and source of distress, referral to supportive care services, and rescreening to determine referral uptake and if distress levels are unremitting or escalating.

Gaps in the current literature base

In order to impact patient outcomes and to provide guidance for services to integrate distress screening, implementation and quality improvement studies must include and evaluate the minimum components of the distress screening and management pathway and the strategies used to implement them. Pragmatic studies which utilize existing resources could provide exemplar models for implementation.

Review aims

There are numerous reviews [3,15–18], commentaries [19–22], and case-studies of distress management programs [23,24▪,25]. What none of these reviews offers is an overview of the various current approaches to implementing and reporting the minimum components of a distress screening and management program. This review seeks to answer:

Do recently published distress screening and management interventions in cancer align with basic guideline components (screening, assessment, referral, and rescreening) and provide sufficient detail on conduct and reporting to guide pragmatic integration into routine cancer care?

METHODS

A rapid review was conducted following structured review methods to retrieve studies published between January 2018 and February 2020.

Inclusion criteria

The key inclusion criterion was distress or psychosocial screening for adult patients with cancer. The criteria used to determine eligibility for full-text inclusion are described below (Table 1).

Table 1
Table 1:
Inclusion and exclusion criteria

Search strategy

Key search terms were adapted from previously published systematic reviews of distress screening interventions [15,18]. Databases included Medline, EMBase, and PsycINFO with supplementary searches conducted in Google Scholar and five relevant journals (Table 2). All searches were completed by February 11, 2020.

Table 2
Table 2:
Search terms

Study selection and data extraction

Titles and abstracts were reviewed by three of the authors (KM, JT, EF) against inclusion criteria with a random 20% sample of articles double coded. Titles and abstracts from the hand-searched journals were assessed for eligibility by a third author (EF). The full texts were double coded (KM, JT) for eligibility with discrepancies resolved by discussion and a third reviewer (EF). Full text data were extracted independently by reviewers (KM, JT, EF) using a pilot-tested form. Figure 1 details the review process.

FIGURE 1
FIGURE 1:
PRISMA flow diagram of review process.

FINDINGS

Study characteristics

Twenty-two articles were included (Table 3 ). The majority of studies came from the United States (n = 8) and included outpatients or outpatient services.

Table 3
Table 3:
Study characteristics
Table 3 (Continued)
Table 3 (Continued):
Study characteristics

Minimum guideline components

Of the 22 reviewed studies, three articles [27,28,30] audited heterogeneous distress screening and management practices of multiple services as part of environmental scans or scoping studies. Two studies [36,47] focused on evaluation of a broader training or implementation program in which screening pathways were not outlined in full. These five studies are not included in the following section which focuses on the specific practices detailed in 17 studies [26,29,31–35,37▪▪,38,39▪▪,40–46] of distress screening and referrals programs:

Initial screening to identify the presence of distress

To align with basic screening components, the first step is the use of a brief validated distress screening tool with clinically meaningful cut-points [1,10].

Validated tools

Featured in 10 studies [31–34,39▪▪,40,42–45], the National Comprehensive Cancer Network (NCCN) distress thermometer was the most commonly used screening tool. However, the cut-points used to denote the presence of distress varied (range: distress thermometer ≥ 4–6). van Nuenen et al.[45] did not establish a cut-point with all health professionals directed to discuss the results regardless of the score. Similarly, van der Meulen et al.[44] prompted nurses to discuss the screening outcomes regardless of exceeding the cut-point.

Other validated tools reported included the Edmonton Symptom Assessment System (ESAS [29,46]), the Minimal Documentation System [41], the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) coupled with a study-specific tool [35], and the Questionnaire on Stress in Cancer Patients – Revised (QSC-R10 [38]). Adaptations to existing validated tools were also described in several studies [32,35,37▪▪].

The NCCN distress thermometer is well validated and has several advantages such as brevity and simplicity. However, it does not accurately measure the severity of distress. Second, it is a single global item and does not assess many of the symptoms which contribute to distress (e.g. nausea, fatigue, pain, anxiety). Examples of more inclusive tools include the ESAS, and this form of screening would provide additional value for health professionals to monitor and intervene on a wider set of symptoms.

Timing of initial screening

Ideally, patients should be screened for distress at each clinical encounter; however, there is ongoing debate about the feasibility and utility of this approach. Regardless, early introduction of distress screening can establish baseline severity, provide an opportunity for early intervention, and normalize the ongoing procedure for patients. Several studies initiated outpatient screening before treatment started [39▪▪] or at first or second appointments [26,31,32,34,37▪▪,40,42]. However, the time point of first screen was not clearly reported or established in several studies [29,41,43–46]. For three studies focused on inpatient distress, screening occurred upon admission [33,35,38]. Although Götz et al.[33] noted that the timing of initial screening shifted upon implementation with approximately 25% being screened at least 2 days after admission.

Health professional initiating screening

Many guidelines do not specify which health professional should initiate the screening procedure [39▪▪]. However, allocation of this clinical activity to specific individuals can ensure routine integration and may impact the feasibility and timeliness of the next steps in the distress management pathway. For example, care coordinators may be ideally placed to generate and action a wide variety of supportive care referrals. Of the 17 studies, seven studies did not report or clearly describe the qualification of the individual responsible for initiating the screening [26,29,31,35,37▪▪,38,46]. For the remaining studies, the majority of screening was initiated by nurses [33,39▪▪,40,42] or nurses in combination with social workers [43] or medical assistants [32,34,41].

Secondary assessment to confirm the presence and source of distress

Given the limited information provided by brief initial screening tools and concerns about the specificity of these tools [17,48], guidelines recommend that potentially distressed patients complete a more detailed assessment with clinical interview and/or a longer psychosocial measure [1,10]. It is important to note that this assessment was seldom described or completed as a two-step linear process in health services.

Confirmation and discussion of the screening results with the patient was described by 13 of the 17 studies with many reporting who discussed the results with patients (e.g. nurses [33,39▪▪,44] and/or physicians [31,34,41,42]). In some cases, screening results may have only been discussed when patients scored above the initial screening cut-point [26,37▪▪,39▪▪]. van Nuenen et al.[45] reported that initial screening results were discussed with 76% of 398 participants; Frey Nascimento et al.[31] found 54% of 333 patients self-reported discussing psychosocial distress with their oncologist. Ploos van Amstel et al.[39▪▪] reported that the screening results and nurses’ clinical judgement was discussed at a multidisciplinary team meeting.

Referral pathway

Distress management guidelines recommend screening results with clinical assessment should be used to match patients to supportive care services according to their level of distress. This is sometimes described as triaged or tiered supportive care. This triage process should be a formalized pathway to ensure access to finite supportive care services based on need (i.e. equitable) and reduce potential clinical variation across health professionals’ experience or expertise (i.e. consistent). The referral processes that were linked to screening results were included in 10 studies (Table 4 ).

Table 4
Table 4:
Tiered referral processes
Table 4 (Continued)
Table 4 (Continued):
Tiered referral processes

Several studies referenced a referral process but did not align or report referrals according to distress levels [42–46] with many of these basing referral according to patient wish or health professional judgement. For example, Tewes et al.[41] described a process whereby patients and physicians discussed screening results during the consultation; a psycho-oncologist and an oncologist specializing in palliative medicine also reviewed the results. Patients could indicate desire for a referral to outpatient palliative care services, psycho-oncology, social work, familial care, hospital, or pastoral care. The patient's oncologist was also contacted by the palliative care team if results suggested potential benefit. van Nuenen et al.[45] followed a similar model, the ‘Screening for Distress and Referral Need’ (SDRN) process. This included administering the distress thermometer and problem checklist, discussing responses with a health professional regardless of score, referral, providing information about distress thermometer and SDRN, and information on referral options and expertise of supportive care. A referral was offered to approximately 54% of all patients.

Rescreening

It is essential to rescreen all patients for distress given the potentially escalating and evolving nature of distress over time. Rescreening is also an opportunity to prompt distressed individuals who have not yet actioned referrals or to escalate the intervention intensity for patients with increasing or unremitting distress (e.g. stepped care). Only seven of the 17 studies described a rescreening procedure [32,33,35,39▪▪,44–46]; one of which rescreened moderately or severely distressed patients again after 7 days to evaluate the intervention [33]. Of note, the frequency at which repeat screens were completed by patients decreased over time as reported by van Nuenen et al.[45].

In summary, many studies did use a validated screening tool but did not follow subsequent pathway components: secondary assessment (13/17 studies); referral pathway (10/17 studies) linked to screening results; and rescreening (7/17 studies). It is important to note that the described components were not audited for quality as part of this review.

Implementation

Nine of the 22 articles indicated that their studies included implementation of a distress screening program (e.g. ‘implemented screening processes for distress, and subsequent referral processes’) [26,29,32,34–36,37▪▪,46,47]. This was distinct from the remaining studies that solely described adherence [33], effectiveness for improving QOL [39▪▪], referral uptake [31,38], patient needs [41], patient experiences [45], feasibility [40,43,44], an audit/survey of practices [27,28,30,42] of a distress screening protocol.

The Cochrane Effective Practice and Organization of Care (EPOC) taxonomy [49] is a framework for categorizing implementation strategies. The EPOC subcategories identified within each of these studies are provided in Table 5. Of the nine studies deemed to include some description of implementation of a distress screening program, seven studies reported strategies ranging from single component through to comprehensive multicomponent interventions [26,32,35,36,37▪▪,47]. Two of the nine studies that described putting into effect a new distress screening program (i.e. implementation) did not describe use of any of these or other fundamental implementation strategies nor was there a clear description of anything that could be identified as an implementation strategy using the EPOC taxonomy [34,36].

Table 5
Table 5:
EPOC implementation strategies used in included studies

Descriptions of implementation varied greatly in regard to labelling and defining strategies which made identification of implementation strategies difficult. We identified seven of the EPOC strategies within both Fitch et al., [29] and Pearson and Melton [37▪▪] by applying the EPOC subcategory definitions. However, it was unclear which of the Fitch et al.[29] description of recommended implementation strategies were actually put into practice. Pearson and Melton [37▪▪] described a comprehensive set of strategies included within the evolving development of an oncology distress screening program that included training and materials, a working group and an iterative feedback and development process, development of a formal Oncology Distress Screening Policy and buy-in and support from clinic managers and leaders. Several studies mentioned implementation strategies but did not provide detail [26,32,34,35,46]. For example, Geske and Johnson [32] evaluated a US cancer institute's adaptation of NCCN guidelines in implementing a new administration protocol of the distress thermometer and electronic referrals within the medical record. The discussion section of the paper noted that staff were provided with their local referral rates (audit and feedback [32]). In another study, despite comparing the number of referrals before and after implementation of electronic screening for psycho-oncological treatment needs, the only applicable EPOC strategy that could be identified (Loth et al.[35]) was the ‘need-based interprofessional implementation procedure of modifications’ to the screening tool to ‘adapt it to clinical requirements’ (local consensus processes with department clinical staff).

Implementation strategies have enormous importance in the field of supportive care in cancer. However, progression of successful routine distress screening and referral programs in cancer is hindered as we are not able to fully interpret nor utilize the findings of existing studies. Researchers and clinicians are unable to determine whether studies simply did not employ an implementation strategy(s) or failed to adequately report them. Justification and evidence for selected implementation strategies were scarce.

Of the seven studies (of the nine included in this section) reporting implementation strategies, only two included any evidence-based rationale for their selections. Zebrack et al.[47] cited quality in healthcare research papers in their description of audit and feedback of results from individual institutions performance according to prescribed psychosocial screening protocols. Contrastingly, McLeod et al.[36] made clear justifications for their complex intervention, citing specific evidence-based knowledge translation research within oncology in relation to their numerous implementation strategies, including that around tailored interventions [50,51], supervision [52,53], and buy-in from cancer care leaders and stakeholders [54].

Recommendations for future research

Distress screening and management programs are recommended by national and international guidelines as a key component of comprehensive cancer care. Therefore, clinicians and policy makers should be confident in integrating this pathway into routine practice. However, there remains a lack of guidance for pragmatic implementation because of a number of issues regarding conduct and reporting of studies:

  • (1) Numerous guidelines recommend similar minimum components for distress screening and management pathways. Testing of the basic elements has been neglected and often nonsignificant results are reported. Researchers should take care to design studies that include these minimum components in order for the field to advance.
  • (2) Effective implementation interventions cannot be identified, evaluated, replicated and disseminated without a full description of their components and how they should be used. Examples of implementation strategies should therefore be clearly specified (named and defined, dose specified, the implementation outcome targeted and affected). There are several relevant reporting guidelines including Standards for Reporting Implementation Studies Statement [55], Workgroup for Intervention Development and Evaluation Research recommendations [56], and Standards for Quality Improvement Reporting Excellence [57].
  • (3) We must have successful models to guide implementation. The field of implementation science can assist our efforts. For example, multicomponent implementation interventions to improve depression or anxiety screening in primary care are more effective in improving provision of care [58–60]. Any chosen strategy/ies for implementation of distress screening and management programs in cancer care should be evidence based and justified as such.

CONCLUSION

Many recently published distress screening and management interventions in cancer do not appear to align with minimum recommended clinical guideline components nor do they provide sufficient detail on implementation to guide pragmatic integration into routine cancer care. Attention to these factors is needed in the design and reporting of future studies if we are to realize the potential benefits of these programs for patients with cancer.

Acknowledgements

This research has received support from the Hunter Cancer Research Alliance (HCRA). HCRA receives funding from the Cancer Institute NSW to operate as a Translational Cancer Research Centre in partnership with the University of Newcastle, Hunter Medical Research Institute, Hunter New England Local Health District and Calvary Mater Newcastle.

Disclosure of funding received for this work: None.

Financial support and sponsorship

No financial support specifically supported the preparation of this review. E.F. was supported by a Cancer Institute of New South Wales Early Career Fellowship. B.B. was supported by a Clinical Research Fellowship from the Hunter Cancer Research Alliance

Conflicts of interest

There are no conflicts of interest.

REFERENCES AND RECOMMENDED READING

Papers of particular interest, published within the annual period of review, have been highlighted as:

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Kristen McCarter and Elizabeth A. Fradgley are to be listed as co-first authors.

Keywords:

cancer; distress; guidelines; implementation; intervention

Copyright © 2020 The Author(s). Published by Wolters Kluwer Health, Inc.