Chemo assist for children mobile health application to manage chemotherapy-related symptoms in acute leukemia in Indonesia: a user-centered design approach
Tóm tắt
A mobile health (mHealth) application can encourage parents and pediatric patients to be involved in caring for their child’s health condition by providing the ability to identify and actively manage chemotherapy-related symptoms in their child. Several monitoring systems available today are diverse in features and system basis. This study aimed to develop and trial the Chemo Assist for Children (CAC) mHealth application for symptom management in children with acute lymphoblastic leukemia (ALL). In this study, the development of the CAC application went through multiple phases and methods. Study phases included: (1) development of the application’s feature based on the need assessment, (2) creation of content of application based on literature review, (3) develop prototyping of CAC, (4) expert review and feedback on the application content, (5) usability testing by targeted end-user. Based on need assessment, it was determined that parents with leukemia children were interested in symptom management of chemotherapy and preferred mobile applications. Therefore, a mHealth application was designed to include features to identify symptoms and provide recommendation strategies to manage the symptom. Usability evaluation by end-user revealed that mHealth is a valid, accessible, and appropriate application for users. The CAC mHealth application developed can meet the needs of technology users to identify symptoms and manage chemotherapy-related symptoms in children with ALL. The CAC mHealth application can accommodate data not recorded at out-of-hospital care, increase the independence of symptom management, and improve communication between parents of children with ALL and health workers.
Tài liệu tham khảo
Tomlinson D, Kline NE. Pediatric oncology nursing: advanced clinical handbook, second edition. 2nd ed. New York: Springer; 2010.
American Cancer Society. Cancer Facts & Figures 2018. Atlanta: American Cancer Society; 2018. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2018/cancer-facts-and-figures-2018.pdf.
Keene N. Childhood leukemia. In: Childhood cancer guides. 2018.
Coughtrey A, Millington A, Bennett S, Christie D, Hough R, Su MT, et al. The effectiveness of psychosocial interventions for psychological outcomes in pediatric oncology : a systematic review. J Pain Symptom Manage. 2018;55:1004–17. https://doi.org/10.1016/j.jpainsymman.2017.09.022.
Abboud MR, Ghanem K, Muwakkit S. Acute lymphoblastic leukemia in low and middleincome countries: disease characteristics and treatment results. Curr Opin Oncol. 2014;26:650–5. https://doi.org/10.1097/CCO.0000000000000125.
Yi M, Zhou L, Li A, Luo S, Wu K. Global burden and trend of acute lymphoblastic leukemia from 1990 to 2017. Aging (Albany NY). 2020;12:22869–91.
McCaffrey CN. Implementation and evaluation of the modified feeling great program for oncology children. Health Educ. 2006;106:294–308. https://doi.org/10.1108/09654280610673472.
McCann L, Maguire R, Miller M, Kearney N. Patients’ perceptions and experiences of using a mobile phone-based advanced symptom management system (ASyMS © ) to monitor and manage chemotherapy related toxicity. Eur J Cancer Care (Engl). 2009;18:156–64. https://doi.org/10.1111/j.1365-2354.2008.00938.x.
Torres V, Nunes MDR, Silva-Rodrigues FM, Bravo L, Adlard K, Secola R, et al. Frequency, severity, and distress associated with physical and psychosocial symptoms at home in children and adolescents with cancer. J Pediatr Heal Care. 2019;33:404–14. https://doi.org/10.1016/j.pedhc.2018.11.007.
Jibb LA, Stevens BJ, Nathan PC, Seto E, Cafazzo JA, Johnston DL, et al. Implementation and preliminary effectiveness of a real-time pain management smartphone app for adolescents with cancer: a multicenter pilot clinical study. Pediatr Blood Cancer. 2017;64:1–9. https://doi.org/10.1002/pbc.26554.
Chung WW, Agbayani CJG, Martinez A, Le V, Cortes H, Har K, et al. Improving children’s cancer pain management in the home setting: development and formative evaluation of a web-based program for parents. Comput Biol Med. 2018;101:146–52. https://doi.org/10.1016/j.compbiomed.2018.08.014.
Cook S, Vettese E, Soman D, Hyslop S, Kuczynski S, Spiegler B, et al. Initial development of Supportive care Assessment, Prioritization and Recommendations for Kids (SPARK), a symptom screening and management application. BMC Med Inform Decis Mak. 2019;19:1–11. https://doi.org/10.1186/s12911-018-0715-6.
Kock A-KK, Kaya RS, Müller C, Andersen B, Langer T, Ingenerf J. Design, implementation, and evaluation of a mobile application for patient empowerment and management of long-term follow-up after childhood cancer. Klin Padiatr. 2015;227:166–70. https://doi.org/10.1055/s-0035-1548840.
Bruggers CS, Baranowski S, Beseris M, Leonard R, Long D, Schulte E, et al. A prototype exercise-empowerment mobile video game for children with cancer, and its usability assessment: developing digital empowerment interventions for pediatric diseases. Front Pediatr. 2018;6:1–18. https://doi.org/10.3389/fped.2018.00069.
Tsimicalis A, Rennick J, Le May S, Stinson J, Sarkis B, Séguin K, et al. “Tell it as it is”: how sisom prompts children and parents to discuss their cancer experience. Cancer Rep. 2019;2:1–15. https://doi.org/10.1002/cnr2.1173.
World Health Organization. mHealth: new horizons for health through mobile technologies. Observatory. 2011;3:66–71. https://doi.org/10.4258/hir.2012.18.3.231.
Novrianda D, Haryanti F, Supriyadi E, Lazuardi L, Herini ES. Development and evaluation of internet-based health technology in pediatric oncology: a scoping review. Asian Pacific J Cancer Prev. 2022;23:1125–35. https://doi.org/10.31557/APJCP.2022.23.4.1125.
Neuendorf KA. Content analysis and thematic analysis-research methods for applied psychologists: design, analysis and reporting. In: Res. methods Appl. Psychol. Des. Anal. Report. New York: Routledge; 2019. p. 211–23.
Zamanzadeh V, Ghahramanian A, Rassouli M, Abbaszadeh A, Alavi-Majd H, Nikanfar A-R. Design and implementation content validity study: development of an instrument for measuring patient-centered communication. J Caring Sci. 2015;4:165–78. https://doi.org/10.15171/jcs.2015.017.
Taherdoost H. What is the best response scale for survey and questionnaire design; review of different lengths of rating scale / attitude scale / Likert scale. Int J Acad Res Manag. 2019;8:1–10.
Association of Pediatric Hematology/Oncology Nurses A. Essentials of pediatric hematology/oncology nursing: a core curriculum. 4th ed. Chicago: Association of Pediatric/Hematology Oncology Nurses; 2014.
Kurniasari FN, Harti LB, Ariestiningsih AD, Wardhani SO, Nugroho S. Buku Ajar Gizi dan Kanker. Malang: Universitas Brawijaya Press; 2017.
Ikatan Dokter Anak Indonesia. Rekomendasi Ikatan Dokter Anak Indonesia : Asuhan Nutrisi Pediatrik (Pediatric Nutrition Care). Jakarta: IDAI; 2011. https://spesialis1.ika.fk.unair.ac.id/wp-content/uploads/2017/03/Rekomendasi-IDAI-Asuhan-Nutrisi-Pediatrik.pdf.
Pan American Health Organization P. Early diagnosis of childhood cancer. Washington, D.C.: PAHO; 2014.
Flank J, Robinson PD, Holdsworth M, Phillips R, Portwine C, Gibson P, et al. Guideline for the treatment of breakthrough and the prevention of refractory chemotherapy-induced nausea and vomiting in children with cancer. Pediatr Blood Cancer. 2016;63:1144–51. https://doi.org/10.1002/pbc.25955.
Sherani F, Boston C, Mba N. Latest update on prevention of acute chemotherapy-induced nausea and vomiting in pediatric cancer patients. Curr Oncol Rep. 2019;21:89. https://doi.org/10.1007/s11912-019-0840-0.
Patel P, Robinson PD, Thackray J, Flank J, Holdsworth MT, Gibson P, et al. Guideline for the prevention of acute chemotherapy-induced nausea and vomiting in pediatric cancer patients: a focused update. Pediatr Blood Cancer. 2017;64:1–12. https://doi.org/10.1002/pbc.26542.
Dupuis LL, Boodhan S, Holdsworth M, Robinson PD, Hain R, Portwine C, et al. Guideline for the prevention of acute nausea and vomiting due to antineoplastic medication in pediatric cancer patients. Pediatr Blood Cancer. 2013;60:1073–82. https://doi.org/10.1002/pbc.24508.
Dupuis LL, Robinson PD, Boodhan S, Holdsworth M, Portwine C, Gibson P, et al. Guideline for the prevention and treatment of anticipatory nausea and vomiting due to chemotherapy in pediatric cancer patients. Pediatr Blood Cancer. 2014;61:1506–12. https://doi.org/10.1002/pbc.25063.
American Academy of Pediatrics Committee on Nutrition. Pediatric Nutrition. 8th ed. Itasca: American Academy of Pediatrics; 2019.
Lehrnbecher T, Robinson P, Fisher B, Alexander S, Ammann RA, Beauchemin M, et al. Guideline for the management of fever and neutropenia in children with cancer and hematopoietic stem-cell transplantation recipients: 2017 update. J Clin Oncol. 2017;35:2082–94. https://doi.org/10.1200/JCO.2016.71.7017.
Robinson PD, Oberoi S, Tomlinson D, Duong N, Davis H, Cataudella D, et al. Management of fatigue in children and adolescents with cancer and in paediatric recipients of haemopoietic stem-cell transplants : a clinical practice guideline. Lancet Child Adolesc Heal 2018:1–8. https://doi.org/10.1016/S2352-4642(18)30059-2.
Sung L, Robinson P, Treister N, Baggott T, Gibson P, Tissing W, et al. Guideline for the prevention of oral and oropharyngeal mucositis in children receiving treatment for cancer or undergoing haematopoietic stem cell transplantation. BMJ Support Palliat Care. 2017;7:7–16. https://doi.org/10.1136/bmjspcare-2014-000804.
Çelebioğlu A, Gürol A, Yildirim ZK, Büyükavci M. Effects of massage therapy on pain and anxiety arising from intrathecal therapy or bone marrow aspiration in children with cancer. Int J Nurs Pract. 2015;21:797–804. https://doi.org/10.1111/ijn.12298.
Thrane S. Effectiveness of integrative modalities for pain and anxiety in children and adolescents with cancer: a systematic review. J Pediatr Oncol Nurs. 2013;30:320–32. https://doi.org/10.1177/1043454213511538.Effectiveness.
Krull KR, Hardy KK, Kahalley LS, Schuitema I, Kesler SR. Neurocognitive outcomes and interventions in long-term survivors of childhood cancer. J Clin Oncol. 2018;36:2181–9. https://doi.org/10.1200/JCO.2017.76.4696.
Clarke RT, Van Den Bruel A, Bankhead C, Mitchell CD, Phillips B, Thompson MJ. Clinical presentation of childhood leukaemia: a systematic review and meta-analysis. Arch Dis Child. 2016;101:894–901. https://doi.org/10.1136/archdischild-2016-311251.
Yakin R, Syarif S, Tehuteru E. Perbandingan Kesintasan Tiga Tahun pada Anak Leukemia Limfoblastik Akut antara Protokol Pengobatan 2006 dan 2013. Indones J Cancer. 2017;11:111–7. https://doi.org/10.33371/ijoc.v11i3.515.
Hyslop S, Dupuis LL, Baggott C, Dix D, Gibson P, Kuczynski S, et al. Validation of the proxy version of symptom screening in pediatrics tool in children receiving cancer treatments. J Pain Symptom Manage. 2018;56:107–12. https://doi.org/10.1016/j.jpainsymman.2018.03.025.
Hockenberry M, Haugen M, Slaven A, Skeens M, Patton L, Montgomery K, et al. Pediatric education discharge support strategies for newly diagnosed children with cancer. Cancer Nurs. 2021;44:E520–30. https://doi.org/10.1097/NCC.0000000000000947.
Behboudi F, Pouralizadeh M, Yeganeh MR, Roushan ZA. The effect of education using a mobile application on knowledge and decision of Iranian mothers about prevention of foreign body aspiration and to relieve choking in children: a quasi-experimental study. J Pediatr Nurs. 2021. https://doi.org/10.1016/j.pedn.2021.07.007.
Aldiss S, Baggott C, Gibson F, Mobbs S, Taylor RM. A critical review of the use of technology to provide psychosocial support for children and young people with long-term conditions. J Pediatr Nurs. 2015;30:87–101. https://doi.org/10.1016/j.pedn.2014.09.014.
Zubaydi F, Saleh A, Aloul F, Sagahyroon A. Security of mobile health (mHealth) systems. In: 2015 IEEE 15th Int Conf Bioinforma Bioeng BIBE 2015. 2015. https://doi.org/10.1109/BIBE.2015.7367689.
Osei E, Mashamba-Thompson TP. Mobile health applications for disease screening and treatment support in low-and middle-income countries: a narrative review. Heliyon. 2021;7:e06639. https://doi.org/10.1016/j.heliyon.2021.e06639.