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Self-Cathing Experience Journal: Enhancing the Patient and Family Experience in Clean Intermittent Catheterization (CIC)
Stuart B. Bauer, M.D., Jennifer E. Holland, B.A., Ilina Rosoklija, M.P.H, Kathryn L. Johnson, B.A., Alexandra L. Bellows, B.S., Diane Manning, R.N., David R. DeMaso, M.D..
Boston Children's Hospital, Boston, MA, USA.
BACKGROUND: The Urology and Psychiatry clinical teams created the Self-Cathing Experience Journal (EJ), a novel online resource for patients and families, to address some of the issues and stigma surrounding CIC. The EJ uses patient, family, and clinician interviews to promote healthy coping strategies. The focus of the present project was to evaluate the safety, feasibility, and usefulness of the Self-Cathing EJ in enhancing patient- and family- experience with CIC. The EJ has been evaluated in previous cohorts of caregivers of patients with depression and mothers of patients with cardiac disease. This project uniquely included patients as well as caregivers in the evaluation process.
METHODS: This project was designated a quality improvement initiative by the hospital’s IRB. Families of children who perform CIC presenting to Urology clinic were asked to volunteer. Families were provided a link to the Self-Cathing EJ and asked to complete a multiple-choice survey. A two-sample t-test compared the mean satisfaction scores of patients aged 7-13 years with patients aged 14-29 years. A one-way ANOVA compared the mean satisfaction scores of caregivers of CIC patients with scores previously published on samples of mothers of patients with congenital cardiac disease and caregivers of patients with depression.
RESULTS: Of the 33 families approached, 25 participated. Survey results, which measured safety, feasibility and usefulness in patient populations, are shown in Table 1. Caregiver responses to the survey were compared with survey responses from previous cohorts of caregivers of patients with depression and mothers of patients with cardiac disease (Table 2). In addition, when asked to assess if the Self-Cathing EJ was helpful to read and see other families’ experiences, caregivers gave the EJ high ratings (mean = 5.89/7). When asked which section they found most helpful, 40% of patients listed Child Contributions whereas 60% of caregivers rated Family Contributions. When asked if they would recommend the EJ to others, all caregivers responded Yes (n=20) while 20 of 21 patients responded similarly.
CONCLUSIONS: This new web-based intervention can be a helpful clinical supplement in promoting healthy coping skills and a diminished sense of isolation in patients who are recommended to perform CIC. The Self-Cathing EJ appears to be safe, feasible, and useful to patients & families needing CIC. High satisfaction scores reported among all patients indicates that the EJ could be an effective resource and that content of the EJ is informative and meaningful to patients and families.
Table 1: Mean Rating and SDs for Satisfaction and Safety of the EJ among Patients who use CIC
|Based on a 1-7 likert scale (1= not at all, 4= moderate, 7= extremely)||Patients Surveyed (n=22)||Patients 7-13 yrs (n=10)||Patients 14-29 yrs (n=12)||p-value (patients 7-13 vs patients 14-29)|
|Overall, how satisfied are you with the Self-Cathing EJ?||5 ± 1.17||4.8 ± 1.14||5.25 ± 1.14||0.3676|
|Did you feel that the Self-Cathing EJ was hurtful?||1.15 ± 0.37||1.2 ± 0.42||1.08 ± 0.29||0.4384|
|Did the Self-Cathing EJ give you any sense that there are others facing similar issues?||6.15 ± 1.18||6 ± 1.63||6.17 ± 0.83||0.7550|
|Did you find it helpful to read about and see other families’ experiences?||6 ± 1.20||5.9 ± 1.2||5.91 ± 1.22||0.9848|
|Did the Self-Cathing EJ increase your sense of hope?||4.95 ± 1.70||4.7 ± 1.83||4.83 ± 1.75||0.8668|
Table 2: Caregiver Mean Ratings & SDs of the Self-Cathing, Cardiac, and Depression EJs
|Based on a 1-7 likert scale (1= not at all, 4= moderate, 7= extremely)||Caregivers of Patients using CIC (n=20)||Mothers of Patients with Cardiac Disease (n=40)||Caregivers of Patients with Depression (n=35)||P-value|
|Overall, how satisfied are you with the EJ?||5.55 ± 1.15||5.7 ± 1.8||5.75 ± 1.66||0.9070|
|Did you feel that the EJ was hurtful?||1.35 ± 1.35||1.2 ± 0.7||1.43 ± 1.14||0.6219|
|Did the EJ give you any sense that there are others facing similar issues?||6.21 ± 1.08||6.7 ± .7||6.44 ± 0.91||0.1103|
|Did you find it helpful to read about and see other families’ experiences?||5.89 ± 1.24||5.7 ± 1.5||6.06 ± 1.39||0.5449|
|Did the EJ increase your sense of hope?||5.11 ± 1.76||5.1 ± 1.9||5.44 ± 1.42||0.6518|
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