Pediatr Transplantation 2015: 19: 107–117
© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12396
Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online” Korus M, Cruchley E, Stinson JN, Gold A, Anthony SJ. (2015) Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online.” Pediatr Transplant, 19: 107–117. DOI: 10.1111/petr.12396. Abstract: Adolescents with SOT demonstrate high rates of medication non-adherence and higher rates of graft loss compared to all other age groups. Self-management interventions encompass information-based material designed to achieve disease-related learning and changes in the participant’s knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self-efficacy and empowerment. Using findings from a needs assessment, an Internetbased self-management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self-management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi-structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web-based intervention is appealing to teenagers and may foster improved self-management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self-management program on adherence, self-efficacy, and transition skills.
Medication non-adherence is a significant problem for adolescents who have had an SOT in Canada (1). Although there is no clear clini-
Abbreviations: AKH, AboutKidsHealth; HRQL, healthrelated quality of life; JIA, juvenile idiopathic arthritis; SOT, solid organ transplantation.
M. Korus1, E. Cruchley2, J. N. Stinson3, A. Gold1 and S. J. Anthony1 1
Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, Toronto, ON, Canada, 2 Division of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada, 3Child Heath Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada
Key words: self management – adherence – behavior – pediatric transplantation – transplantation Moira Korus, Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada, M5G 1X8 Tel.: +416-813-5178 Fax: +416-813-5541 E-mail: [email protected] and Elizabeth Cruchley, Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada, M5G 1X8 Tel.: +416-813-7654 Fax: +416-813-6271 E-mail: [email protected] Accepted for publication 27 October 2014
cal validation of what level of non-adherence leads to poor outcome, in an overview of current literature, rates of non-adherence range from 5% to 71% in kidney transplant patients and 17–53% in liver transplant patients (2). In addition, there are reports showing disturbing rates of transplant rejection in adolescents and young adults (2, 3). Additionally, studies have 107
Korus et al.
shown a significant graft loss occurring after a patient transfers from pediatric to adult centers (4–6). In particular, a recent Canadian study showed that risk for graft loss was more than two times higher for adolescents adapting to an adult center compared to the period before adaptation (6). Adolescents with transplants are expected to assume responsibility for disease management due to their growing independence and autonomy. However, adolescents’ acceptance of and ability to implement this increasing responsibility is not always optimal, thereby often reducing the potential benefits of treatment and adversely impacting HRQL (5, 6). There is need for an acceptable and usable selfmanagement and transitional care program to guide adolescent patients toward successful transition to adult care and adoption of selfcare behaviors. Rationale for promoting self-management in SOT
Self-management can be defined as “the individual’s ability to manage the symptoms, treatment, physical and psychological consequences, and lifestyle changes inherent in living with a chronic illness” (7). Chronic illness, such as the need for an organ transplant during adolescence, has been shown to complicate life for adolescents and negatively impact aspects including physical, cognitive, emotional, social, and vocational functioning (8, 9). Self-management interventions include information-based programs as well as cognitive or behavioral strategies designed to increase knowledge, selfconfidence or self-efficacy, as well as the use of self-care behaviors. For example, in one study conducted by Last et al. (10), a cognitive behavioral therapy-based program focused on relaxation techniques, role-playing, and open communication strategies to help adolescents better understanding their own personal competencies. This program had a significant and positive impact on social competence, information seeking, relaxation, and positive thinking in both the short- and long-term. Provision of programs to promote positive health behaviors, such as adherence and self-management skills in youth with SOT, is necessary to optimize wellbeing in this population. The current status of education in the transplant population demonstrates an emphasis on educating parents who in turn filter the information and pass it on to their child or teenager. A recent consensus conference (11) identified critical milestones for the adolescent transplant patient to achieve prior to transfer to an adult 108
center which include, but are not limited to, the following: the ability to describe the original cause of the organ failure and the subsequent need for transplant; knowledge related to medication, including name, dose, function, timing, and side effects; and the capacity to provide most self-care independently. It is essential that healthcare workers provide an educational program that promotes self-management, has information specific to adolescents with SOT, and has the potential to prepare them for learning these skills. Rationale for harnessing the potential of the Internet as delivery medium
Recent statistics on Internet use in teenagers found that 87% of teenagers 12–17 yr of age use the Internet, with 51% using it on a daily basis and 31% using it to access health-related information (12). In another study (13),
© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12396
Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online” Korus M, Cruchley E, Stinson JN, Gold A, Anthony SJ. (2015) Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online.” Pediatr Transplant, 19: 107–117. DOI: 10.1111/petr.12396. Abstract: Adolescents with SOT demonstrate high rates of medication non-adherence and higher rates of graft loss compared to all other age groups. Self-management interventions encompass information-based material designed to achieve disease-related learning and changes in the participant’s knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self-efficacy and empowerment. Using findings from a needs assessment, an Internetbased self-management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self-management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi-structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web-based intervention is appealing to teenagers and may foster improved self-management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self-management program on adherence, self-efficacy, and transition skills.
Medication non-adherence is a significant problem for adolescents who have had an SOT in Canada (1). Although there is no clear clini-
Abbreviations: AKH, AboutKidsHealth; HRQL, healthrelated quality of life; JIA, juvenile idiopathic arthritis; SOT, solid organ transplantation.
M. Korus1, E. Cruchley2, J. N. Stinson3, A. Gold1 and S. J. Anthony1 1
Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, Toronto, ON, Canada, 2 Division of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada, 3Child Heath Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada
Key words: self management – adherence – behavior – pediatric transplantation – transplantation Moira Korus, Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada, M5G 1X8 Tel.: +416-813-5178 Fax: +416-813-5541 E-mail: [email protected] and Elizabeth Cruchley, Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada, M5G 1X8 Tel.: +416-813-7654 Fax: +416-813-6271 E-mail: [email protected] Accepted for publication 27 October 2014
cal validation of what level of non-adherence leads to poor outcome, in an overview of current literature, rates of non-adherence range from 5% to 71% in kidney transplant patients and 17–53% in liver transplant patients (2). In addition, there are reports showing disturbing rates of transplant rejection in adolescents and young adults (2, 3). Additionally, studies have 107
Korus et al.
shown a significant graft loss occurring after a patient transfers from pediatric to adult centers (4–6). In particular, a recent Canadian study showed that risk for graft loss was more than two times higher for adolescents adapting to an adult center compared to the period before adaptation (6). Adolescents with transplants are expected to assume responsibility for disease management due to their growing independence and autonomy. However, adolescents’ acceptance of and ability to implement this increasing responsibility is not always optimal, thereby often reducing the potential benefits of treatment and adversely impacting HRQL (5, 6). There is need for an acceptable and usable selfmanagement and transitional care program to guide adolescent patients toward successful transition to adult care and adoption of selfcare behaviors. Rationale for promoting self-management in SOT
Self-management can be defined as “the individual’s ability to manage the symptoms, treatment, physical and psychological consequences, and lifestyle changes inherent in living with a chronic illness” (7). Chronic illness, such as the need for an organ transplant during adolescence, has been shown to complicate life for adolescents and negatively impact aspects including physical, cognitive, emotional, social, and vocational functioning (8, 9). Self-management interventions include information-based programs as well as cognitive or behavioral strategies designed to increase knowledge, selfconfidence or self-efficacy, as well as the use of self-care behaviors. For example, in one study conducted by Last et al. (10), a cognitive behavioral therapy-based program focused on relaxation techniques, role-playing, and open communication strategies to help adolescents better understanding their own personal competencies. This program had a significant and positive impact on social competence, information seeking, relaxation, and positive thinking in both the short- and long-term. Provision of programs to promote positive health behaviors, such as adherence and self-management skills in youth with SOT, is necessary to optimize wellbeing in this population. The current status of education in the transplant population demonstrates an emphasis on educating parents who in turn filter the information and pass it on to their child or teenager. A recent consensus conference (11) identified critical milestones for the adolescent transplant patient to achieve prior to transfer to an adult 108
center which include, but are not limited to, the following: the ability to describe the original cause of the organ failure and the subsequent need for transplant; knowledge related to medication, including name, dose, function, timing, and side effects; and the capacity to provide most self-care independently. It is essential that healthcare workers provide an educational program that promotes self-management, has information specific to adolescents with SOT, and has the potential to prepare them for learning these skills. Rationale for harnessing the potential of the Internet as delivery medium
Recent statistics on Internet use in teenagers found that 87% of teenagers 12–17 yr of age use the Internet, with 51% using it on a daily basis and 31% using it to access health-related information (12). In another study (13),
