A Real-Time Smartphone-Based Pain Management App for Adolescents With Cancer: Establishing System Requirements and a Pain Care Algorithm Based on Literature Review, Interviews, and Consensus
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Abstract
Background: Pain is one of the most common and distressing symptoms for adolescents with cancer. Pain negatively affects adolescent quality of life, impedes cancer recovery, results in adolescent and family distress, and is associated with long-term morbidity. Pain related to cancer also represents a significant cost burden to the healthcare system and families, with pain being the most common reason for cancer patients to utilize emergency health services.
Objective: Given the prevalence of cancer pain, personal suffering involved, and costs associated with management, there is a need to improve pain treatment for adolescents with cancer in their everyday environments. In response to this need, a phased-approach is being used to develop and test a smartphone-based pain app, called PainSquad+, capable of providing adolescents with real-time pain management support. Here we describe the first phases of PainSquad+ development, the creation of the decision algorithm and system requirements that will inform the pain management advice given by the system.
Methods: A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on: (a) important pain inputs, (b) pain management advice and (c) system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain healthcare providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app.
Results: The systematic literature review established the current state of research related to non-pharmacological pediatric cancer pain management. The 2-day consensus conference established: (1) which clinically important pain inputs by adolescents would require action (pain management advice) from the app, (2) the appropriate advice the app should provide adolescents in pain and (3) the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary healthcare professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were: (1) overall endorsement of the system, (2) need for the addition of a clinical expert, (3) need to individualize the system and (4) changes to the algorithm to improve potential clinical effectiveness.
Conclusions: This study has used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility and effectiveness testing of the app with adolescents with cancer.
Objective: Given the prevalence of cancer pain, personal suffering involved, and costs associated with management, there is a need to improve pain treatment for adolescents with cancer in their everyday environments. In response to this need, a phased-approach is being used to develop and test a smartphone-based pain app, called PainSquad+, capable of providing adolescents with real-time pain management support. Here we describe the first phases of PainSquad+ development, the creation of the decision algorithm and system requirements that will inform the pain management advice given by the system.
Methods: A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on: (a) important pain inputs, (b) pain management advice and (c) system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain healthcare providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app.
Results: The systematic literature review established the current state of research related to non-pharmacological pediatric cancer pain management. The 2-day consensus conference established: (1) which clinically important pain inputs by adolescents would require action (pain management advice) from the app, (2) the appropriate advice the app should provide adolescents in pain and (3) the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary healthcare professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were: (1) overall endorsement of the system, (2) need for the addition of a clinical expert, (3) need to individualize the system and (4) changes to the algorithm to improve potential clinical effectiveness.
Conclusions: This study has used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility and effectiveness testing of the app with adolescents with cancer.
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