A Web-Based Mobile App (INTERACCT App) for Adolescents Undergoing Cancer and Hematopoietic Stem Cell Transplantation Aftercare to Improve the Quality of Medical Information for Clinicians: Observational Study (Preprint)

BACKGROUND A growing number of cancer and hematopoietic stem cell transplant (HSCT) survivors require long-term follow-up with optimal communication schemes, and patients' compliance is crucial. Adolescents have various unmet needs. Regarding self-report of symptoms and health status, users of mobile apps showed enhanced compliance. Currently, HSCT aftercare at the HSCT outpatient clinic of the St. Anna Children’s Hospital in Vienna, Austria, is based on handwritten diaries, carrying various disadvantages. Recently, we developed the prototype of a web-based, self-monitoring gamified mobile app tailored for adolescents: the INTERACCT (Integrating Entertainment and Reaction Assessment into Child Cancer Therapy) app. OBJECTIVE This observational, prospective study evaluated the usability of the INTERACCT app for tracking real-time self-reported symptoms and health status data in adolescent HSCT patients and a healthy matched control group. The primary outcome of the study was the quality of the self-reported medical information. We hypothesized that the mobile app would provide superior medical information for the clinicians than would the handwritten diaries. METHODS Health data were reported via paper diary and mobile app for 5 consecutive days each. The quality of medical information was rated on a 5-point scale independently and blinded by two HSCT clinicians, and the duration of use was evaluated. A total of 52 participant questionnaires were assessed for gaming patterns and device preferences, self-efficacy, users’ satisfaction, acceptability, and suggestions for improvement of the mobile app. Interrater reliability was calculated with the intraclass correlation coefficient, based on a two-way mixed model; one-way repeated-measures analysis of variance and t tests were conducted post hoc. Descriptive methods were used for correlation with participants’ demographics. For users’ satisfaction and acceptability of the mobile app, the median and the IQR were calculated. RESULTS Data from 42 participants—15 patients and 27 healthy students—with comparable demographics were evaluated. The results of our study indicated a superiority of the quality of self-reported medical data in the INTERACCT app over traditional paper-and-pencil assessment (mobile app: 4.14 points, vs paper-based diary: 3.77 points, P=.02). The mobile app outperformed paper-and-pencil assessments mainly among the patients, in particular among patients with treatment-associated complications (mobile app: 4.43 points, vs paper-based diary: 3.73 points, P=.01). The mobile app was used significantly longer by adolescents (≥14 years: 4.57 days, vs ≤13 years: 3.14 days, P=.03) and females (4.76 days for females vs 2.95 days for males, P=.004). This corresponds with a longer duration of use among impaired patients with comorbidities. User satisfaction and acceptability ratings for the mobile app were high across all groups, but adherence to entering a large amount of data decreased over time. Based on our results, we developed a case vignette of the target group. CONCLUSIONS Our study was the first to show that the quality of patient-reported medical information submitted via the INTERACCT app embedded in a serious game is superior to that submitted via a handwritten diary. In light of these results, a refinement of the mobile app supported by a machine learning approach is planned within an international research project.

[1]  Helmut Hlavacs,et al.  Evaluation of Informative Content of Health Data Submitted Through a Mobile Serious Game , 2019, ICEC-JCSG.

[2]  L. Dupuis,et al.  Optimizing symptom control in children and adolescents with cancer , 2019, Pediatric Research.

[3]  C. Subbe,et al.  Do mHealth applications improve clinical outcomes of patients with cancer? A critical appraisal of the peer-reviewed literature , 2019, Supportive Care in Cancer.

[4]  Holly O Witteman,et al.  The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study , 2018, JMIR cancer.

[5]  M. Kamdar,et al.  A randomized controlled trial of a novel artificial-intelligence based smartphone application to optimize the management of cancer-related pain. , 2018, Journal of Clinical Oncology.

[6]  C. Peters,et al.  Long-term Effects of Myeloablative Allogeneic Hematopoietic Stem Cell Transplantation in Pediatric Patients with Acute Lymphoblastic Leukemia , 2018, Current Oncology Reports.

[7]  O. Husson,et al.  Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies. , 2018, Blood.

[8]  James W Suliburk,et al.  Mixed-Methods Analysis of Factors Impacting Use of a Postoperative mHealth App , 2017, JMIR mHealth and uHealth.

[9]  Michelle A. Fortier,et al.  Pain buddy: A novel use of m-health in the management of children's cancer pain , 2016, Comput. Biol. Medicine.

[10]  Helmut Hlavacs,et al.  Design considerations for a serious game for children after hematopoietic stem cell transplantation , 2016, Entertain. Comput..

[11]  Jennifer N Stinson,et al.  Construct validity and reliability of a real-time multidimensional smartphone app to assess pain in children and adolescents with cancer , 2015, Pain.

[12]  Kimberly M Wesley,et al.  A review of mobile applications to help adolescent and young adult cancer patients , 2015, Adolescent health, medicine and therapeutics.

[13]  J. Stinson,et al.  “There’s a Pain App for That”: Review of Patient-targeted Smartphone Applications for Pain Management , 2015, The Clinical journal of pain.

[14]  Daniel Wolff,et al.  Long-term follow-up after allogeneic stem cell transplantation. , 2015, Deutsches Arzteblatt international.

[15]  Gillian R. Hayes,et al.  Developing a model for understanding patient collection of observations of daily living: a qualitative meta-synthesis of the Project HealthDesign program , 2014, Personal and Ubiquitous Computing.

[16]  J. Varni,et al.  Health-related quality of life in pediatric patients after allogeneic SCT: development of the PedsQL Stem Cell Transplant module and results of a pilot study , 2014, Bone Marrow Transplantation.

[17]  Francisco Rebelo,et al.  A Review of Gamification for Health-Related Contexts , 2014, HCI.

[18]  Richard L Street,et al.  Feasibility of a Symptom Management Intervention for Adolescents Recovering From a Hematopoietic Stem Cell Transplant , 2013, Cancer nursing.

[19]  L. Goldberg,et al.  Health promotion for adolescent childhood leukemia survivors: Building on prevention science and ehealth , 2013, Pediatric blood & cancer.

[20]  Faith Gibson,et al.  Initial Evaluation of an Electronic Symptom Diary for Adolescents with Cancer , 2012, JMIR research protocols.

[21]  Lillian Sung,et al.  A systematic review of symptom assessment scales in children with cancer , 2012, BMC Cancer.

[22]  Stanton Newman,et al.  The Impact of Mobile Monitoring Technologies on Glycosylated Hemoglobin in Diabetes: A Systematic Review , 2012, Journal of diabetes science and technology.

[23]  Adam B Wilcox,et al.  Research Data Collection Methods: From Paper to Tablet Computers , 2012, Medical care.

[24]  J. Stinson,et al.  Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer , 2012, Journal of medical Internet research.

[25]  K. Ness,et al.  NCI, NHLBI/PBMTC First International Conference on Late Effects after Pediatric Hematopoietic Cell Transplantation: health-related quality of life, functional, and neurocognitive outcomes. , 2012, Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation.

[26]  L. Robison,et al.  Prevalence and predictors of chronic health conditions after hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study. , 2010, Blood.

[27]  J. Bensing,et al.  Compliance with momentary pain measurement using electronic diaries: A systematic review , 2009, European journal of pain.

[28]  Sarah Carolan,et al.  Electronic diaries as a tool to improve pain management: is there any evidence? , 2007, Pain medicine.

[29]  K. Ness,et al.  Impact of chronic graft-versus-host disease on the health status of hematopoietic cell transplantation survivors: a report from the Bone Marrow Transplant Survivor Study. , 2005, Blood.

[30]  S. Shiffman,et al.  Patient compliance with paper and electronic diaries. , 2003, Controlled clinical trials.

[31]  P. Rosenberg,et al.  The Second Pediatric Blood and Marrow Transplant Consortium International Consensus Conference on Late Effects after Pediatric Hematopoietic Cell Transplantation: Defining the Unique Late Effects of Children Undergoing Hematopoietic Cell Transplantation for Immune Deficiencies, Inherited Marrow Fail , 2017, Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation.

[32]  O. Dale,et al.  Despite technical problems personal digital assistants outperform pen and paper when collecting patient diary data. , 2007, Journal of clinical epidemiology.

[33]  Cancer Therapy Evaluation Program Common Terminology Criteria for Adverse Events v3.0 (CTCAE) , 2003 .