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1.
Mhealth ; 9: 5, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36760786

RESUMEN

Background: The Roadmap mobile health (mHealth) app was developed to provide health-related quality of life (HRQOL) support for family caregivers of patients with cancer. Methods: Eligibility included: family caregivers (age ≥18 years) who self-reported as the primary caregiver of their pediatric patient with cancer; patients (age ≥5 years) who were receiving cancer care at the University of Michigan. Feasibility was calculated as the percentage of caregivers who logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the 120-day study duration. Feasibility and acceptability was also assessed through a Feasibility and Acceptability questionnaire and the Mobile App Rating Scale to specifically assess app-quality. Exploratory analyses were also conducted to assess HRQOL self- or parent proxy assessments and physiological data capture. Results: Between September 2020-September 2021, 100 participants (or 50 caregiver-patient dyads) consented and enrolled in the ONC Roadmap study for 120-days. Feasibility of the study was met, wherein the majority of caregivers (N=32; 65%) logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the study duration (defined a priori in the Protocol). The Feasibility and Acceptability questionnaire responses indicated that the study was feasible and acceptable with the majority (>50%) reporting Agree or Strongly Agree with positive Net Favorability [(Agree + Strongly Agree) - (Disagree + Totally Disagree)] in each of the domains (e.g., Fitbit use, ONC Roadmap use, completing longitudinal assessments, engaging in similar future study, study expectations). Improvements were seen across the majority of the mental HRQOL domains across all groups; even though underpowered, there were significant improvements in caregiver-specific aspects of HRQOL and anxiety and in depression and fatigue for children (ages 8-17 years), and a trend toward improvement in depression for children ages 8-17 years and in fatigue for adult patients. Conclusions: This study supports that mHealth technology may be a promising platform to provide HRQOL support for caregivers of pediatric patients with cancer. Importantly, the findings suggest that the study protocol was feasible, and participants were favorable to participate in future studies of this intervention alongside routine cancer care delivery.

2.
Cardiol Young ; 30(12): 1973-1975, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-33012302

RESUMEN

Lymphatic vessel dysplasia is associated with Fontan-associated protein-losing enteropathy. Extra nodal non-Hodgkin lymphomas including mucosa-associated lymphoid tissue (MALT lymphoma) are associated with lymphatic vessel dysplasia. Here, we describe the case of a 7-year-old with Fontan-associated protein-losing enteropathy who developed MALT lymphoma with a clinical course indicative of interaction between these pathologies and improvement in protein-losing enteropathy after MALT lymphoma treatment. This case suggests a pathophysiologic overlap which has implications for the management of Fontan-associated protein-losing enteropathy.


Asunto(s)
Procedimiento de Fontan , Vasos Linfáticos , Linfoma de Células B de la Zona Marginal , Enteropatías Perdedoras de Proteínas , Niño , Procedimiento de Fontan/efectos adversos , Humanos , Tejido Linfoide , Linfoma de Células B de la Zona Marginal/complicaciones , Linfoma de Células B de la Zona Marginal/diagnóstico , Linfoma de Células B de la Zona Marginal/cirugía , Membrana Mucosa , Enteropatías Perdedoras de Proteínas/diagnóstico , Enteropatías Perdedoras de Proteínas/etiología , Enteropatías Perdedoras de Proteínas/terapia
3.
JMIR Form Res ; 4(1): e17077, 2020 Jan 23.
Artículo en Inglés | MEDLINE | ID: mdl-32012037

RESUMEN

BACKGROUND: Roadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial. OBJECTIVE: This study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0. METHODS: We conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (≥18 years) of patients who had undergone HSCT. RESULTS: Most participants were female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), employed at least part time (6/10, 60%), caregivers of adult patients (7/10, 70%), and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, "NA") or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items. CONCLUSIONS: This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process-(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding-by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.49188.

4.
Int J Surg Case Rep ; 27: 176-179, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27621096

RESUMEN

INTRODUCTION: There has been a recent trend toward nonoperative management of solid organ injuries with arteriography and embolization as alternatives to surgical exploration. We examine the use of arterial embolization in the management of a post-subtotal nephrectomy urinoma in a patient with severe renal injury secondary to blunt trauma. METHODS: This case report has been reported in line with the CARE criteria [13]. PRESENTATION OF CASE: A 35-year-old female patient presented with a persistent urinoma after an incomplete nephrectomy for blunt renal trauma. Computed tomography scan of the abdomen demonstrated a 47×68×101 mm3 collection superior to the remnant of the resected right kidney. With persistence of the urinoma after placement of an 8 French drainage catheter, the patient was taken for arterial embolization of the lower renal artery for ablation of the kidney remnant. DISCUSSION: Most kidney injuries with urinoma formation are treated successfully with supportive measures, however refractory cases require intervention. Arterial embolization has been used successfully in the treatment of traumatic pseudoaneurysms, arteriovenous fistulas, and some renal tumors. In this patient, we extended the use of embolization to infarct vessels of the functioning kidney remnant as an alternative to surgery. Post-embolization the patient recovered well with permanent resolution of the urinoma and short-term side effects limited to short-lived fever and lumbar pain. CONCLUSION: Arterial embolization should be considered as an alternative to surgery in cases of persistent urinoma following renal trauma with retained remnants.

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