Background: Pain is a common symptom in childhood cancer. Since children spend more time at home, families are increasingly responsible for pain management. This study aimed at assessing pain at home.
Purpose This study assessed adherence to, feasibility of, and barriers and facilitators of implementation of an app developed to monitor and follow-up with pain in children with cancer at home. Methods Children (8–18 years) receiving cancer treatment (all diagnoses) or their parents (of children aged 0–7 years) used the KLIK Pain Monitor app for 3 weeks. Pain was assessed twice daily using an 11-point numeric rating scale (NRS-11) (ranging from 0 to 10). Healthcare professionals (HCP’s) from the hospital’s Pediatric Pain Service were instructed to follow-up with clinically significant pain scores (≥ 4) within 120 min (scores 4–6) or 30 min (scores 7–10). Adherence, feasibility, and implementation outcomes were assessed using questionnaires, app log data, and interviews. Results Twenty-seven children (M age = 7.3 years, 51.8% male) and six HCP’s participated. Sixty-three percent (N = 17) of families used the app on a daily basis during three weeks, and 18.5% (N = 5) reported pain scores twice daily during that time (family adherence). Twelve out of 27 children (44.4%) reported a clinically significant pain score at least once. In 70% (14/20) of clinically significant pain scores, HCP’s followed-up with families within the set timeframe (HCP adherence). Outcomes reveal feasibility for the majority of app functions (i.e., positive evaluation by ≥ 70% families/HCP’s), and non-feasible aspects could be resolved. Identified barriers and facilitators were used to improve future implementation efforts. Conclusion Use of the KLIK Pain Monitor app seems feasible. Future research will determine its effectiveness in reducing pain in children with cancer at home.
Background: Many significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and whether appraisals of threat and loss, and passive coping mediate this relationship. Methods: Significant others (n = 228) of persons with SCI or ABI completed questionnaires shortly after admission to first inpatient rehabilitation after onset of the condition. The questionnaire included measures to assess psychological distress (Hospital Anxiety and Depression Scale), resilience (Connor-Davidson Resilience Scale-10), appraisals (Appraisals of Life Events scale, threat and loss) and passive coping (Utrecht Coping List). The PROCESS tool was used to test the presence of mediation. Confounding and differences between SCI and ABI were investigated. Results: High levels of psychological distress among significant others were found (34-41%). Fifty-five percent of the variance in psychological distress was explained by the relationship between resilience and psychological distress. This relationship was mediated by appraisals of threat and loss, and passive coping. The relationship between resilience and psychological distress was similar in the SCI and ABI groups. Conclusions: The results of our study indicate that appraisals of threat and loss and passive coping are mediating factors in the relationship between resilience and psychological distress. It seems useful to investigate if interventions focussing on psychological factors like resilience, appraisal and coping are effective to prevent or reduce psychological distress among significant others of persons with SCI or ABI.
Purpose We aimed to systematically identify and characterize existing digital health tools for pain monitoring in children with cancer, and to assess common barriers and facilitators of implementation. Methods A comprehensive literature search (PubMed, Cochrane, Embase, and PsycINFO) was carried out to identify published research on mobile apps and wearable devices focusing on acute and/or chronic pain in children (0–18 years) 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). Project leaders of identified tools were invited for an interview on barriers and facilitators. Results Of 121 potential publications, 33 met inclusion criteria, describing 14 tools. Two methods of delivery were used: apps (n=13), and a wearable wristband (n=1). Most publications focused on feasibility and acceptability. 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 factors that facilitated implementation related 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 and little is still known about their effectiveness. 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 evidence based interventions from ending up unused.
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.
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