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1.
Pediatr Blood Cancer ; 71(9): e31142, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38896013

RESUMEN

RATIONALE: Acute chest syndrome (ACS) often develops during hospitalizations for sickle cell disease (SCD) vaso-occlusive episodes and may be triggered by a combination of chest wall splinting, opioid use, hypoventilation, and atelectasis. In 2017, Boston Medical Center's general pediatric inpatient unit instituted the novel use of bi-level positive airway pressure (BiPAP) as "supportive non-invasive ventilation for ACS prevention" (SNAP) to prevent ACS and respiratory decompensation. OBJECTIVE: The goals of this qualitative study were to identify perceived benefits, harms, facilitators, and barriers to use of SNAP. METHODS: We conducted semi-structured key informant interviews at three sites with different levels of SNAP implementation (Site 1: extensive implementation; Site 2: limited implementation; Site 3: not yet implemented) regarding experiences with and/or perceptions of SNAP. Interviews and coding were guided by the Promoting Action on Research Implementation in Health Services (PARiHS) framework. RESULTS: Thirty-four participants (physicians, nurses, respiratory therapists, child life specialists, psychologists, youth with SCD, and parents) completed interviews. Major themes included: (i) participants perceive BiPAP as effective at preventing ACS, and for those with medically stable ACS, for preventing respiratory decompensation. (ii) BiPAP use is appropriate on the general pediatric inpatient unit for medically stable patients with SCD. (iii) Improving the patient experience is the most important factor to optimize acceptance of BiPAP by patients and families. CONCLUSION/FUTURE DIRECTIONS: SNAP is perceived as effective and appropriate for hospitalized pediatric patients with SCD. Improving the patient experience is the biggest challenge. These data will inform a future protocol for a multicenter hybrid effectiveness/implementation trial of SNAP.


Asunto(s)
Síndrome Torácico Agudo , Anemia de Células Falciformes , Ventilación no Invasiva , Padres , Humanos , Anemia de Células Falciformes/terapia , Anemia de Células Falciformes/complicaciones , Niño , Síndrome Torácico Agudo/prevención & control , Síndrome Torácico Agudo/etiología , Síndrome Torácico Agudo/terapia , Padres/psicología , Masculino , Femenino , Ventilación no Invasiva/métodos , Adolescente , Grupo de Atención al Paciente , Investigación Cualitativa , Hospitalización , Preescolar , Adulto , Niño Hospitalizado , Pronóstico
2.
JMIR Form Res ; 8: e50465, 2024 Feb 09.
Artículo en Inglés | MEDLINE | ID: mdl-38335012

RESUMEN

BACKGROUND: Tobacco smoking is an important risk factor for disease, but inaccurate smoking history data in the electronic medical record (EMR) limits the reach of lung cancer screening (LCS) and tobacco cessation interventions. Patient-generated health data is a novel approach to documenting smoking history; however, the comparative effectiveness of different approaches is unclear. OBJECTIVE: We designed a quality improvement intervention to evaluate the effectiveness of portal questionnaires compared to SMS text message-based surveys, to compare message frames, and to evaluate the completeness of patient-generated smoking histories. METHODS: We randomly assigned patients aged between 50 and 80 years with a history of tobacco use who identified English as a preferred language and have never undergone LCS to receive an EMR portal questionnaire or a text survey. The portal questionnaire used a "helpfulness" message, while the text survey tested frame types informed by behavior economics ("gain," "loss," and "helpfulness") and nudge messaging. The primary outcome was the response rate for each modality and framing type. Completeness and consistency with documented structured smoking data were also evaluated. RESULTS: Participants were more likely to respond to the text survey (191/1000, 19.1%) compared to the portal questionnaire (35/504, 6.9%). Across all text survey rounds, patients were less responsive to the "helpfulness" frame compared with the "gain" frame (odds ratio [OR] 0.29, 95% CI 0.09-0.91; P<.05) and "loss" frame (OR 0.32, 95% CI 11.8-99.4; P<.05). Compared to the structured data in the EMR, the patient-generated data were significantly more likely to be complete enough to determine LCS eligibility both compared to the portal questionnaire (OR 34.2, 95% CI 3.8-11.1; P<.05) and to the text survey (OR 6.8, 95% CI 3.8-11.1; P<.05). CONCLUSIONS: We found that an approach using patient-generated data is a feasible way to engage patients and collect complete smoking histories. Patients are likely to respond to a text survey using "gain" or "loss" framing to report detailed smoking histories. Optimizing an SMS text message approach to collect medical information has implications for preventative and follow-up clinical care beyond smoking histories, LCS, and smoking cessation therapy.

3.
J Patient Exp ; 10: 23743735231171564, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37151607

RESUMEN

Care transitions after hospitalization require communication across care teams, patients, and caregivers. As part of a quality improvement initiative, we conducted qualitative interviews with a diverse group of 53 patients who were recently discharged from a hospitalization within a safety net hospital to explore how patient preferences were included in the hospital discharge process and differences in the hospital discharge experience by race/ethnicity. Four themes emerged from participants regarding desired characteristics of interactions with the discharge team: (1) to feel heard, (2) inclusion in decision-making, (3) to be adequately prepared to care for themselves at home through bedside teaching, (4) and to have a clear and updated discharge timeline. Additionally, participants identified patient-level factors the discharge planning team should consider, including the social context, family involvement, health literacy, and linguistic barriers. Lastly, participants identified provider characteristics, such as a caring and empathetic bedside manner, that they found valuable in the discharge process. Our findings highlight the need for shared decision-making in the discharge planning process to improve both patient safety and satisfaction.

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