A parent–science partnership to improve postsurgical pain management in young children: Co-development and usability testing of the Achy Penguin smartphone-based app

References

• Fortier MA , MacLaren JE , Martin SR , Perret-Karimi D , Kain ZN. Pediatric pain after ambulatory surgery: where’s the medication? Pediatrics. 2009;124(4):e588–e595. doi:10.1542/peds.2008-3529.
   Google Scholar
• Dorkham MC , Chalkiadis GA , von Ungern Sternberg BS , Davidson AJ. Effective postoperative pain management in children after ambulatory surgery, with a focus on tonsillectomy: barriers and possible solutions. Paediatr Anaesth. 2014;24(3):239–48. doi:10.1111/pan.12327.
   Google Scholar
• Williams G , Bell G , Buys J , Moriarty T , Patel A , Sunderland R , Shepherd L , Brooks P , Polhill S , Bosenberg A. The prevalence of pain at home and its consequences in children following two types of short stay surgery: a multicenter observational cohort study. Bosenberg A, ed. Pediatr Anesth. 2015;25(12):1254–63. doi:10.1111/pan.12749.
   Google Scholar
• Power NM , Howard RF , Wade AM , Franck LS . Pain and behaviour changes in children following surgery. Arch Dis Child. 2012;97(10):879–84. doi:10.1136/archdischild-2011-301378.
   Google Scholar
• Birnie KA , Chambers CT , Fernandez CV , Forgeron PA , Latimer MA , McGrath PJ , Cummings EA , Finley GA . Hospitalized children continue to report undertreated and preventable pain. Pain Res Manag. 2014;19(4):198–204. doi:10.1155/2014/614784.
   Google Scholar
• Sadhasivam S , Chidambaran V , Olbrecht VA , Costandi A , Clay S , Prows CA , Zhang X , Martin LJ . Opioid-related adverse effects in children undergoing surgery: unequal burden on younger girls with higher doses of opioids. Pain Med. 2015;16(5):985–97. doi:10.1111/pme.12660.
   Google Scholar
• Chan JY-C , von Baeyer CL . Cognitive developmental influences on the ability of preschool-aged children to self-report their pain intensity. Pain. 2016;157(5):997–1001. doi:10.1097/j.pain.0000000000000476.
   Google Scholar
• Williams G , Howard RF , Liossi C . Persistent postsurgical pain in children and young people: prediction, prevention, and management. PAIN Rep. 2017;2(5):e616. doi:10.1097/PR9.0000000000000616.
   Google Scholar
• Davidson F , Snow S , Hayden JA , Chorney J . Psychological interventions in managing postoperative pain in children: a systematic review. Pain. 2016;157(9):1872–86. doi:10.1097/j.pain.0000000000000636.
   Google Scholar
• Stinson JN , Jibb LA , Nguyen C , Nathan PC , Maloney AM , Dupuis LL , Gerstle JT , Alman B , Hopyan S , Strahlendorf C , et al. Development and testing of a multidimensional iPhone pain assessment application for adolescents with cancer. J Med Internet Res. 2013;15(3):e51. doi:10.2196/jmir.2350.
   Google Scholar
• Stinson JN , Jibb LA , Nguyen C , Nathan PC , Maloney AM , Dupuis LL , Gerstle JT , Hopyan S , Alman BA , Strahlendorf C , et al. Construct validity and reliability of a real-time multidimensional smartphone app to assess pain in children and adolescents with cancer. Pain. 2015;156(12):2607–15. doi:10.1097/j.pain.0000000000000385.
   Google Scholar
• Chou R , Gordon DB , de Leon-Casasola OA , Rosenberg JM, Bickler S, Brennan T, Carter T, Cassidy CL, Chittenden EH, Degenhardt E, et al. Management of postoperative pain: a clinical practice guideline from the American pain society, the American society of regional anesthesia and pain medicine, and the American society of anesthesiologists’ committee on regional anesthesia, executive committee, and administrative council. J Pain. 2016;17(2):131–57. doi:10.1016/j.jpain.2015.12.008.
   Google Scholar
• Lalloo C , Shah U , Birnie KA , Davies-Chalmers C , Rivera J , Stinson J , Campbell F . Commercially available smartphone apps to support postoperative pain self-management: scoping review. JMIR MHealth UHealth. 2017;5(10):e162. doi:10.2196/mhealth.8230.
   Google Scholar
• de la Vega R , Miró J . mHealth: a strategic field without a Solid Scientific Soul. A systematic review of pain-related apps. Mendelson JE, ed. PLoS One. 2014;9(7):e101312. doi:10.1371/journal.pone.0101312.
   Google Scholar
• Lalloo C , Jibb LA , Rivera J , Agarwal A , Stinson JN . “There’s a Pain App for That”: review of patient-targeted smartphone applications for pain management. Clin J Pain. 2015;31(6):557–63. doi:10.1097/AJP.0000000000000171.
   Google Scholar
• Cravero JP , Fanciullo GJ , McHugo GJ , Baird JC . The validity of the Computer Face Scale for measuring pediatric pain and mood. Lonnqvist P-A, ed. Pediatr Anesth. 2013;23(2):156–61. doi:10.1111/pan.12036.
   Google Scholar
• Gulur P , Rodi SW , Washington TA , Cravero JP , Fanciullo GJ , McHugo GJ , Baird JC . Computer face scale for measuring pediatric pain and mood. J Pain. 2009;10(2):173–79. doi:10.1016/j.jpain.2008.08.005.
   Google Scholar
• Gupta N , Naegeli AN , Turner-Bowker DM , Flood EM , Heath LE , Mays SM , Dampier C . Cognitive testing of an electronic version of the faces pain scale-revised with pediatric and adolescent sickle cell patients. Patient - Patient-Centered Outcomes Res. 2016;9(5):433–43. doi:10.1007/s40271-016-0166-z.
   Google Scholar
• Sun T , West N , Ansermino JM , Montgomery CJ , Myers D , Dunsmuir D , Lauder GR , von Baeyer CL , Lonnqvist P-A . A smartphone version of the Faces Pain Scale-Revised and the Color Analog Scale for postoperative pain assessment in children. Lonnqvist P-A, ed. Pediatr Anesth. 2015;25(12):1264–73. doi:10.1111/pan.12790.
   Google Scholar
• Wood C , von Baeyer CL , Falinower S , Moyse D , Annequin D , Legout V . Electronic and paper versions of a faces pain intensity scale: concordance and preference in hospitalized children. BMC Pediatr. 2011;11(1). doi:10.1186/1471-2431-11-87.
   Google Scholar
• Emmott AS , West N , Zhou G , Dunsmuir D , Montgomery CJ , Lauder GR , von Baeyer CL . Validity of simplified versus standard self-report measures of pain intensity in preschool-aged children undergoing venipuncture. J Pain. 2017;18(5):564–73. doi:10.1016/j.jpain.2016.12.015.
   Google Scholar
• Institute of Digital Media and Child Development Working Group on Games for Health; Baranowski T , Blumberg F , Buday R, DeSmet A, Fiellin LE, Green CS, Kato PM, Lu AS, Maloney AE, Mellecker R, et al. Games for health for children—current status and needed research. Games Health J. 2016;5(1):1–12. doi:10.1089/g4h.2015.0026.
   Google Scholar
• Lieberman DA , Fisk MC , Biely E . Digital games for young children ages three to six: from research to design. Comput Sch. 2009;26(4):299–313. doi:10.1080/07380560903360178.
   Google Scholar
• von Baeyer CL , Lin V , Seidman LC , Tsao JC , Zeltzer LK . Pain charts (body maps or manikins) in assessment of the location of pediatric pain. Pain Manag. 2011;1(1):61–68. doi:10.2217/pmt.10.2.
   Google Scholar
• Hicks CL , von Baeyer CL , Spafford PA , van Korlaar I , Goodenough B . The Faces Pain Scale-Revised: toward a common metric in pediatric pain measurement. Pain. 2001;93(173):183. doi:10.1016/S0304-3959(01)00314-1.
   Google Scholar
• von Baeyer CL , Chambers CT , Forsyth SJ , Eisen S , Parker JA . Developmental data supporting simplification of self-report pain scales for preschool-age children. J Pain. 2013;14(10):1116–21. doi:10.1016/j.jpain.2013.04.008.
   Google Scholar
• Stinson JN , Lalloo C , Harris L , Isaac L , Campbell F , Brown S , Ruskin D , Gordon A , Galonski M , Pink LR , et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014;19(5):257–65. doi:10.1155/2014/935278.
   Google Scholar
• Molich RA . Critique of “How to specify the participant group size for usability studies: a practitioner’s guide” by macefield. J Usability Stud. 2010;5:124–28.
   Google Scholar
• Macefield R . How to specify the participant group size for usability studies: a practitioner’s guide. J Usability Stud. 2009;5:34–45.
   Google Scholar
• Jibb LA , Cafazzo JA , Nathan PC , Seto E , Stevens BJ , Nguyen C , Stinson JN . Development of a mHealth real-time pain self-management app for adolescents with cancer: an iterative usability testing study. J Pediatr Oncol Nurs. 2017;34(4):283–94. doi:10.1177/1043454217697022.
   Google Scholar
• Kushniruk AW , Patel VL . Cognitive and usability engineering methods for the evaluation of clinical information systems. J Biomed Inform. 2004;37(1):56–76. doi:10.1016/j.jbi.2004.01.003.
   Google Scholar
• Snodgrass A , Coyne R . Models, metaphors and the hermeneutics of designing. Des Issues. 1992;9(1):56. doi:10.2307/1511599.
   Google Scholar
• Kushniruk A . Evaluation in the design of health information systems: application of approaches emerging from usability engineering. Comput Biol Med. 2002;32:141–49.
   Google Scholar
• Sandelowski M . Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–40. doi:10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G.
   Google Scholar
• von Baeyer CL , Jaaniste T , Vo HLT , Brunsdon G , Lao H-C , Champion GD . Systematic review of self-report measures of pain intensity in 3- and 4-year-old children: bridging a period of rapid cognitive development. J Pain. 2017;18(9):1017–26. doi:10.1016/j.jpain.2017.03.005.
   Google Scholar
• Gates A , Shave K , Featherstone R , Buckreus K , Ali S , Scott SD , Hartling L . Procedural pain: systematic review of parent experiences and information needs. Clin Pediatr (Phila). 2018;57(6):672–88. doi:10.1177/0009922817733694.
   Google Scholar
• Amirav I , Vandall-Walker V , Rasiah J , Saunders L . Patient and researcher engagement in health research: a parent’s perspective. Pediatrics. 2017;140(3):e20164127. doi:10.1542/peds.2016-4127.
   Google Scholar
• Curran JA , Bishop A , Chorney J , MacEachern L , Mackay R . Partnering with parents to advance child health research. Healthc Manage Forum. 2018;31(2):45–50. doi:10.1177/0840470417744568.
   Google Scholar
• Politi MC , Jones KM , Philpott SE . The role of patient engagement in addressing parents’ perceptions about immunizations. JAMA. 2017;318(3):237. doi:10.1001/jama.2017.7168.
   Google Scholar
• Shen S , Kar D-T , Beesley L , Karmali A , Williams L , Tanel N , McPherson AC . How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2017;20(4):543–54. doi:10.1111/hex.12490.
   Google Scholar
• Wittmeier KDM , Klassen TP , Sibley KM . Implementation science in pediatric health care: advances and opportunities. JAMA Pediatr. 2015;169(4):307. doi:10.1001/jamapediatrics.2015.8.
   Google Scholar
• Frank L , Forsythe L , Ellis L , Schrandt S , Sheridan S , Gerson J , Konopka K , Daugherty S . Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Qual Life Res. 2015;24(5):1033–41. doi:10.1007/s11136-014-0893-3.
   Google Scholar
• Canadian Institutes of Health Research . Patient engagement. Canadian Institutes of Health Research; 2014. www.cihr-irsc.gc.ca/e/45851.html.
   Google Scholar
• National Institutes for Health Research . Patient and public involvement. INVOLVE; 2018. www.invo.org.uk/posttypejargon/patient-and-public-involvement/.
   Google Scholar
• McCurdie T , Taneva S , Casselman M , Yeung M, McDaniel C, Ho W, Cafazzo J. mHealth consumer apps: the case for user-centered design. Biomed Instrum Technol. 2012;46(s2):49–56. doi:10.2345/0899-8205-46.s2.49.
   Google Scholar
• Schnall R , Rojas M , Bakken S , Brown W , Carballo-Dieguez A , Carry M , Gelaude D , Mosley JP , Travers J . A user-centered model for designing consumer mobile health (mHealth) applications (apps). J Biomed Inform. 2016;60:243–51. doi:10.1016/j.jbi.2016.02.002.
   Google Scholar
• Manafò E , Petermann L , Vandall-Walker V , Mason-Lai P , Thompson Coon J . Patient and public engagement in priority setting: A systematic rapid review of the literature. Thompson Coon J, ed. PLoS One. 2018;13(3):e0193579. doi:10.1371/journal.pone.0193579.
   Google Scholar
• Proctor EK , Landsverk J , Aarons G , Chambers D , Glisson C , Mittman B . Implementation research in mental health services: an emerging science with conceptual, methodological, and training challenges. Adm Policy Ment Health Ment Health Serv Res. 2009;36(1):24–34. doi:10.1007/s10488-008-0197-4.
   Google Scholar
• Canadian Paediatric Society, Digital Health Task Force, Ottawa, Ontario; Ponti M , Bélanger S , Grimes R, Heard J, Johnson M, Moreau E, Norris M, Shaw A, Stanwick R, Van Lankveld J, et al. Screen time and young children: promoting health and development in a digital world. Paediatr Child Health. 2017;22(8):461–68. doi:10.1093/pch/pxx123.
   Google Scholar