Barriers to symptom management care pathway implementation in pediatric Cancer

Most pediatric patients receiving cancer treatments experience bothersome symptoms that are poorly documented and often not treated [1, 2]. Symptom control is important as there is a strong correlation between increasing symptom burden and inferior quality of life [1]. Improving symptom control is likely to require multiple approaches including systematic symptom screening, symptom feedback to healthcare professionals and adherence to symptom management clinical practice guidelines (CPGs) [3, 4]. To address symptom screening, we developed the Symptom Screening in Pediatrics Tool (SSPedi), which measures the degree of bother for 15 symptoms considered most important by patients [5‐7]. We then developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), which is a web-based application that consists of a symptom screening component centered on SSPedi and a supportive care CPG component [8‐10].

To test whether SPARK can improve symptom control and quality of life for pediatric patients with cancer, we were awarded operating grants from the National Institutes of Health (1R01CA251112) and the Canadian Institutes of Health Research (PJT 169165) to perform a cluster randomized trial of 20 institutions in the United States. This trial will randomize 10 sites to intervention and 10 sites to control (usual care) groups. The intervention will include prompts to complete self-reported symptom screening three times weekly for 8 weeks for newly diagnosed pediatric patients with cancer (both inpatients and outpatients), symptom feedback to the primary healthcare team and adaptation of care pathways for symptom management. The care pathways will be adapted by each intervention site from generic pathways we developed using a standardized process to identify relevant CPGs [11]. Thus, intervention sites will need to adapt and implement evidenced-based care pathways. Planning of the trial started concurrent with the coronavirus disease pandemic (COVID-19) [12, 13] thus adding potential barriers.

There were limited reports on barriers to implementation of evidence-based care in pediatric oncology. For the care pathways to be successfully incorporated into routine practice, understanding implementation barriers was essential. We hypothesized that there would be barriers relevant to the planned trial including care pathway implementation, and that understanding those barriers would facilitate development of strategies to improve implementation. Thus, we circulated a survey to sites that had committed to the trial at the grant submission stage from which the 20 participating sites would be chosen. Objectives were to describe barriers to pediatric cancer symptom management care pathway implementation and the impact of the COVID-19 pandemic on clinical research evaluating their implementation.

Of the 25 sites who supported grant submission, one withdrew because of institutional resource constraints and one did not complete the survey, leaving 23 institutions included in the analysis. The survey was completed between August 5, 2020 and September 9, 2020. Table 1 describes institutional, patient and healthcare professional characteristics. Within all institutions, health care professionals create orders in the electronic health record for symptom prevention and management. The median number of new pediatric cancer patients diagnosed annually was 90 (interquartile range (IQR) 63 to 200). All institutions were described as not-for-profit. The median number of physician full time equivalents was 9 (IQR 5 to 13).

Table 2 shows the results of the inner setting measures from the CFIR. Across most constructs, at least 70% of institutions agreed that the culture, climate, leadership and resources facilitated symptom management care pathway implementation. With respect to the implementation climate construct, less than 70% of respondents agreed or strongly agreed with the following positively framed statements: “department staff gets the support they need to implement care pathways for symptom management” (57%), “department staff gets recognition for implementing care pathways for symptom management” (39%) and “implementing care pathways for symptom management is a top priority of the department” (61%). Respondents from 35% of institutions indicated that “staff members often showed signs of stress and strain”.

Table 3 shows additional barriers to implementing symptom management care pathways among respondents. The most common barriers (somewhat, a lot or extreme barrier) were as follows: lack of person-time to create care pathways and champion their use (35%), lack of interest from physicians (30%) and lack of information technology resources (26%). Severe barriers (a lot or extreme barrier) were rare and the most common was the lack of person-time to create care pathways and champion their use (9%).

Table 4 illustrates the impact of the COVID-19 pandemic on research activities at the institutions. Most sites reported no negative impact of the pandemic across research activities. The most common activities that were a lot more difficult or almost impossible were executing contracts (9%), study activation (9%) and accessing patients in person (9%).

Table 5 compares the attributes of sites who agreed that symptom management care pathway implementation was supported, recognized and prioritized vs. those who did not agree with these statements. Sites with fewer newly diagnosed cancer patients and those with fewer physician, nurse practitioner and physician assistant full time equivalents were significantly more likely to agree that their staff are supported. Sites with a larger percentage of black patients were significantly more likely to agree that their staff receives recognition for implementing symptom management care pathways and that implementation is a priority.

In this study, we found that few survey respondents anticipated challenges with care pathway implementation. However, potential barriers that were reported lay within the implementation climate construct of CFIR and were lack of support, recognition and prioritization at the participating institutions. Lack of person-time to create care pathways and champion their use, lack of physician interest, and lack of information technology were other important potential barriers reported with respect to developing and implementing symptom management care pathways. However, the COVID-19 pandemic did not appear to be perceived as a major barrier to research conduct.

We found that unfavorable implementation climate may be a potential barrier to care pathway implementation. Other studies have also identified this construct as a potential problem in program implementation [23, 24]. It is interesting that smaller sites reported receiving more support for care pathway implementation. It is possible that smaller sites are more likely to provide verbal and non-verbal support of initiatives in general and if this is true, identifying ways to provide this type of support across institutions could be important. Such support could include wide availability of research staff to address questions and provide educational materials. It may also be important to identify site champions who can provide this type of support locally. More specifically, our proposed strategy will focus on enhancing support and recognition for care pathway implementation although these elements will primarily arise extrinsic to the institution and be provided by the study team.

The finding of greater support at institutions with a greater percentage of black patients may be spurious. It also may reflect additional supports given to institutions that are minority based, such as those participating in the National Cancer Institute Community Oncology Research Program (a program aimed at sites with greater representation of racial/ethnic minorities or rural residents). We also found that lack of physician interest was a potential barrier to developing and implementing symptom management care pathways. Future qualitative research could explore reasons behind lack of interest and identify potential interventions to mitigate or address the issue.

We found that the COVID-19 pandemic was not perceived as a major barrier to research conduct. This finding is in contrast to a recent meta-analysis suggesting that trial delays and cessation were common and were a direct consequence of the pandemic [25]. Our findings may differ because the survey was distributed later in the pandemic, when many institutions had adapted to it. Further, some institutions have made distinctions based upon whether research activities are in person vs. not in person and whether they are essential vs. not essential. Given that our trial could be conducted entirely remotely, and since some could consider this type of trial essential, respondents may have anticipated fewer barriers compared with other research studies. Lastly, respondents to our survey may not have had personal experience surmounting the logistical and bureaucratic barriers to the conduct of research created by the COVID-19 pandemic and, thus, may have not fully appreciated its impact. While our findings are unique to this particular project, they offer useful insight into institutional support of research during the pandemic.

The strengths of this study include the utilization of an established framework (CFIR) in addition to study-specific items in order to identify potential barriers to care pathway implementation. This will allow important contextual elements to be evaluated for their future relationship to implementation strategies and outcomes. Another strength is the evaluation of the impact of the COVID-19 pandemic on clinical research, a timely and important question. However, the study is limited as two institutions either dropped out or did not complete the survey; they are likely to be different than the 23 institutions that did complete the survey. In addition, these questions were mainly answered by a single individual, namely the site principal investigator. While input from other colleagues could have been accessed, perspectives of other healthcare professionals at the site were not fully represented. Also, sites agreed to provide support at the grant submission stage, suggesting they believe that symptom management is important. Thus, participating sites are likely a positively biased cohort and the “typical” site may report more barriers to care pathway implementation. Finally, evaluation of characteristics of sites who agreed that their department supports, recognizes and prioritizes the implementation of symptom management care pathways vs. those who did not agree should be considered hypothesis generating.

In conclusion, respondents at pediatric oncology institutions expected few barriers to symptom management care pathway implementation at their institutions. The most commonly reported barriers to implementation were lack of support, recognition and prioritization. The COVID-19 pandemic may not be a major barrier to clinical research activities in pediatric oncology. These results were limited by being conducted at sites that have prioritized supportive care. Future work should use this information to improve care pathway implementation.