Summary
Introduction
No tools exist to help children with spina bifida (SB) describe their incontinence
concerns and to help their providers account for them when evaluating management success.
Our aim was to understand patients’, parents’, and clinicians’ preferences about how
a SB continence goal-selection tool (MyGoal-C) should look and function, and to create
a tool prototype.
Methods
We used a qualitative research approach integrated with human-centered design methods.
We recruited children with SB (8-17 years old), parents (>=18 years old) of children
with SB (8-17 years old) in clinic and online, and urology healthcare providers at
our institution. We surveyed children and parents, and conducted parent and provider
Zoom-based prototyping sessions to iteratively design the app. Design researchers
analyzed online activities using affinity diagramming, group analysis and modeling
activities. Provider sessions were analyzed with qualitative thematic analysis based
on grounded theory. Recruitment continued until saturation was reached.
Results
Thirteen children with SB participated (median age: 10 years old, 4 female, 9 shunted,
10 using bladder catheterizations). Thirty-seven parents participated (33 mothers,
median age: 43 years old). Children and parents unanimously recommended an app and
their comments generated 6 major theme domains: goal-setting process, in-app content,
working toward goals, urology provider check-in, app customization, and using big
data to improve future functionality. Twenty-one of the parents participated in 3
prototyping sessions with 6 breakout groups. The remaining 16 parents and 13 children
then completed the Prototype Testing Survey, leading to a refined prototype and a
visual flow map of the app experience (Figure). Feedback from 11 urology healthcare providers (7 female, 6 advanced practice providers)
generated 8 themes: patient engagement/autonomy, clearly displaying results, integration
into clinic workflow, not increasing clinical staff burden, potential clinician bias,
parental involvement, limitations of the app, and future app adaptation. These cumulative
data allowed for a construction of a final app prototype.
Conclusions
Children with SB and parents preferred an app to help them set and track continence
goals. All stakeholders, including urology providers, offered complementary and mutually
reinforcing feedback to guide the creation of an app prototype that would ultimately
be integrated into a clinic visit.
Keywords
Abbreviations:
UI (urinary incontinence), FI (fecal incontinence), SB (spina bifida), SDM (shared decision making), HRQOL (health-related quality of life), RJ (Research Jam)To read this article in full you will need to make a payment
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References
- Continence in patients with spina bifida: long term results.Arch Dis Child. 1994; 70: 107-110https://doi.org/10.1136/adc.70.2.107
- A case of base rate bias, or are adolescents at a higher risk of developing complications after catheterizable urinary channel surgery?.J Pediatr Urol. 2017; https://doi.org/10.1016/j.jpurol.2016.12.002
- Reviewing definitions of urinary continence in the contemporary spina bifida literature: A call for clarity.J Pediatr Urol. 2013; 9: 567-574https://doi.org/10.1016/j.jpurol.2013.02.006
- Quality of life in individuals with spina bifida: A research update.Dev Disabil Res Rev. 2010; 16: 47-59https://doi.org/10.1002/ddrr.96
- A patient- and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issues.J Pediatr Urol. 2022; https://doi.org/10.1016/j.jpurol.2022.10.027
- Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida.Cent European J Urol. 2017; 70: 306-313https://doi.org/10.5173/ceju.2017.1195
- Quality of Life Assessment in Spina Bifida for Children (QUALAS-C): Development and Validation of a Novel Health-related Quality of Life Instrument.Urology. 2016; 87: 178-184https://doi.org/10.1016/j.urology.2015.09.027
- Patient engagement in research: a systematic review.BMC Health Serv Res. 2014; 14: 89https://doi.org/10.1186/1472-6963-14-89
Sanematsu H, Wiehe S. Learning to look: design in health services research. Touchpoint 2014.
Sanematsu H, Wiehe S. How do you do? Design research methods and the “hows” of community based participatory research. Insight 2: Engaging the Health Humanities 2013.
- 53. Fun with Facebook: The Impact of Focus Groups on the Development of Awareness Campaigns for Adolescent Health.Journal of Adolescent Health. 2011; 48: S44-S45https://doi.org/10.1016/j.jadohealth.2010.11.099
- What Is Human Centred Design?.The Design Journal. 2014; 17: 606-623https://doi.org/10.2752/175630614X14056185480186
Glaser BG, Strauss AL. The Discovery of Grounded Theory. Routledge; 2017. https://doi.org/10.4324/9780203793206.
- A new methodology for formulating ill-structured problems.Omega (Westport). 1994; 22: 627-645https://doi.org/10.1016/0305-0483(94)90053-1
Kolko J. Exposing the Magic of Design: A Practitioner’s Guide to the Methods & Theory of Synthesis. New York: Oxford University Press; 2011.
- Adaptive Path’s Guide to Experience Mapping.San Francisco. 2013;
Service RW. Book Review: Corbin, J., & Strauss, A. (2008). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory (3rd ed.). Thousand Oaks, CA: Sage. Organ Res Methods 2009;12:614–617. https://doi.org/10.1177/1094428108324514.
John Creswell. Qualitative Inquiry and Research Design. 3rd ed. Los Angeles: Sage Publications; 2013.
- Mental Health Mobile Apps for Preadolescents and Adolescents: A Systematic Review.J Med Internet Res. 2017; 19: e176https://doi.org/10.2196/jmir.7332
- Symptoms and daily experiences reported by children with cancer using a game-based app.J Pediatr Nurs. 2022; 65: 33-43https://doi.org/10.1016/j.pedn.2022.04.013
- Effectiveness of a Multifaceted Intervention for Prevention of Obesity in Primary School Children in China.JAMA Pediatr. 2022; 176e214375https://doi.org/10.1001/jamapediatrics.2021.4375
- Study protocol of a randomized controlled trial to test the effect of a smartphone application on oral-health behavior and oral hygiene in adolescents with fixed orthodontic appliances.BMC Oral Health. 2018; 18: 19https://doi.org/10.1186/s12903-018-0475-9
- Adolescent Health Promotion Interventions Using Well-Care Visits and a Smartphone Cognitive Behavioral Therapy App: Randomized Controlled Trial.JMIR Mhealth Uhealth. 2022; 10e34154https://doi.org/10.2196/34154
- iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease.Contemp Clin Trials. 2018; 74: 88-96https://doi.org/10.1016/j.cct.2018.10.006
- Quantifying usability: an evaluation of a diabetes mHealth system on effectiveness, efficiency, and satisfaction metrics with associated user characteristics.Journal of the American Medical Informatics Association. 2016; 23: 5-11https://doi.org/10.1093/jamia/ocv099
Article info
Publication history
Accepted:
March 10,
2023
Received in revised form:
March 9,
2023
Received:
December 10,
2022
Publication stage
In Press Journal Pre-ProofFootnotes
☆Internal review board approval: 1707207063.
Identification
Copyright
© 2023 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
