JMIR Publications

ABSTRACT

Background:

Pain is one of the most common and distressing symptoms during childhood cancer treatment, yet pain management is still suboptimal in the home setting. Over the past years, there has been an increase in the amount of digital health tools that have been developed to monitor pain in this population, with the ultimate goal of improving pain management and reducing pain. However, literature about these tools’ effectiveness is scarce. Moreover, in order to successfully implement these tools in practice, identification of determinants that might slow down (‘barriers’) or facilitate (‘facilitators’) future implementation is necessary.

Objective:

We aimed to systematically identify and characterize existing digital tools for pain monitoring in children with cancer, and to assess common barriers and facilitators of implementation to serve future digital health researchers and implementers.

Methods:

A comprehensive literature search (PubMed, Cochrane, Embase, and PsycINFO) was carried out to identify published research on digital tools focusing on acute and/or chronic pain in children (0-18 y) with cancer (all diagnoses) during active treatment. Tools had to at least include a monitoring feature for one or more pain characteristic(s) (e.g. presence, severity, perceived cause interference with daily life). Based on published research on each tool, we extracted the following data: method of delivery, features, end-users and findings of each publication. Project leaders of identified tools were invited for an interview on barriers and facilitators.

Results:

Of 115 potential publications, 27 met inclusion criteria, describing 13 digital tools. Three methods of delivery were used: apps (n=11), a web-portal (n=1), and a wearable wristband (n=1). Features included: monitoring of one or more pain characteristic(s), with ‘severity’ being the most common (used in 100% of tools), providing information about pain(treatment) (38.5%), communication options (61.5%), and use of game elements (30.8%). One tool could only be used during hospitalization (7.7%), five tools were meant for an outpatient setting (38.5%), and seven tools were available for in- as well as outpatients (53.8%). Most publications focused on feasibility and acceptability, and little is still known about effectiveness. Results of interviews with project leaders (100% response rate), reveal that most barriers to implementation were identified in the organizational context (47% of barriers), with financial resources and insufficient time available mentioned most often. Most facilitators were connected to end-users (56% of facilitators), with end-user cooperation and end-user satisfaction mentioned most often.

Conclusions:

Existing digital tools for pain in children with cancer were mostly apps directed at pain severity monitoring. Preliminary results on effectiveness seem promising, yet more research is needed. Paying attention to common barriers and facilitators, especially taking into account realistic funding expectations and involving end-users during early stages of new projects, might prevent good interventions from ending up unused and decrease research waste.