Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria—a pilot study (ePRO-AA-PNH)

Baenziger, Silas; Weisshaar, Kimmo; Arokoski, Reetta; Gerull, Sabine; Halter, Joerg; Rovó, Alicia; Bargetzi, Mario; Goede, Jeroen S; Senft, Yuliya; Valenta, Sabine; Passweg, Jakob; Drexler, Beatrice

doi:10.1007/s00277-022-05012-5

Cited by 3 publications

(2 citation statements)

References 35 publications

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Section: Introductionmentioning

confidence: 99%

“…Although some studies explore interventions to improve patient medication compliance, the status of medication implementation, medication persistence, and related factors are unclear, which is not conducive to the substantive progress of interventions. 7,8 As demonstrated by multiple studies, medication adherence is a common but complex individual behavior faced by patients with chronic medical problems related to multiple factors. [9][10][11] When it comes to aplastic anemia patients, the oral medications mentioned, like androgens, often show significant side effects, such as severe acne, local skin reactions, mood swings, or sexual arousal.…”

Section: Introductionmentioning

confidence: 99%

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Perspective and Experience of Patients with Aplastic Anemia on Medication Adherence

Li,

Wu,

Shen

et al. 2023

PPA

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Background Drug treatment is critical for patients with aplastic anemia, and medication adherence directly impacts the therapeutic effect. Poor medication adherence is common among patients with chronic diseases. However, knowledge of the perceptions and experiences of patients with aplastic anemia regarding taking prescribed medicines is limited. Objective To gain insights into the perceptions and experiences of patients with aplastic anemia regarding taking prescribed medicines. Methods A descriptive qualitative design was used. Fifteen patients with aplastic anemia were recruited from the hematology department. Individual semi-structured interviews were conducted. The data were analyzed using the thematic analysis method and conceptualized using the Health Belief Model. Results Five themes emerged: the perceived threat of aplastic anemia, perceived benefits and barriers of taking prescribed medicines, cues to action, self-efficacy, and modifying factors. While patients’ knowledge was limited, they acknowledged the threat of aplastic anemia and the necessity of drug treatments, but they also encountered some barriers in practice. The desire for health and healthcare providers’ opinions were the main clues to medication adherence. The expectation of the future and the sense of self-competency made participants adopt good behavior. Discussions This study provided new perspectives on the medication adherence of patients with aplastic anemia, which may be valuable in clinical work and research. Further interventions should be developed for intentional and unintentional non-compliance. Future research can start with developing professional assessment tools addressing the influence of cognition and emotion on compliance.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Perspective and Experience of Patients with Aplastic Anemia on Medication Adherence

Li,

Wu,

Shen

et al. 2023

PPA

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Application of Intelligent Management Model Based on Electronic Patient-Reported Outcome During Immunotherapy in Patients with Gastric Cancer: A Single-Center Retrospective Study

Li,

2024

Br J Hosp Med

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Aims/Background Gastric cancer is the third leading cause of cancer-related death worldwide, which seriously affects the health of patients. Immunotherapy is a commonly used clinical treatment for gastric cancer, but the adverse events caused by it seriously affect the prognosis of patients. Therefore, it is necessary to control and manage the disease risk of patients during immunotherapy. To explore the effect of applying an intelligent management model based on electronic patient-reported outcome (ePRO) in patients with gastric cancer during immunotherapy. Methods The clinical data of 184 gastric cancer patients receiving immunotherapy in The Fourth Hospital of Hebei Medical University from September 2021 to September 2023 were retrospectively analyzed. Ninety patients receiving ePRO-based intelligent management were selected, and 85 patients were included in the observation group after excluding 5 patients. For the reference group, 94 patients receiving common case management were selected, with 90 patients being included after excluding 4 patients. After 6 months of follow-up, the nutritional status score, quality of life, treatment compliance and adverse events were compared between the two groups. Results No significant difference was detected in nutritional status and World Health Organization Quality of Life-BREF (WHOQOL-BREF) scores of the patients before discharge (p > 0.05). After 2 months of follow-up, compared with the reference group, the observation group had a higher proportion of patients in grade A and grade B, which was not statistically significant (p > 0.05), and significantly higher physiological and psychological scores (p < 0.001), but showed no meaningful differences in other fields (p > 0.05). After 4 months of follow-up, the nutritional status in the observation group was significantly improved (p < 0.05), and the subjects displayed higher WHOQOL-BREF scores (p < 0.05) than those in the reference group. No significant difference in the incidence of adverse events was detected (p > 0.05). After 6 months of follow-up, the treatment compliance of the observation group was 83.53%, which was significantly higher than that of the reference group (70.00%; p < 0.05). Conclusion The intelligent management model based on ePRO is conducive to improving the nutritional status of patients with gastric cancer during immunotherapy, as well as enhancing their quality of life and treatment compliance, making it worthy of clinical application.

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Real-World Study of US Adults with Paroxysmal Nocturnal Hemoglobinuria Treated with Pegcetacoplan

Mulherin,

Shenoy,

Arnett

et al. 2024

Hematology Reports

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Background: Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, acquired, life-threatening disease characterized by complement-mediated hemolysis. OPERA is the first US longitudinal real-world study on C3 inhibitor therapy, known as pegcetacoplan. Methods: OPERA enrolled US patients with PNH, age ≥18, who were prescribed pegcetacoplan, and data were collected from routine care. Hemoglobin was reported by patients during regular follow-up (censored from transfusions). The Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue (0–52 score) and Patient-Reported Outcomes Measurement Information System scale for Cognitive Function Abilities (PROMIS-CF; 23.27–67.09 t-score) were completed electronically (low score = negative outcome). Patients self-reported incidence of healthcare resource utilization (HCRU). Results: By January 2024, 70 patients (mean age 44.6 years; 57.1% female) reported up to 9 months of pegcetacoplan treatment, with a median [IQR] follow-up of 6.6 [3.8] months. The latest reported hemoglobin levels improved by a mean (SD) of 2.6 (1.9) g/dL from baseline. At 3, 6 and 9 months, patients reported clinically meaningful improvements (≥5 points) in FACIT-F (53.3–69.0%) and (≥2 points) PROMIS-CF (46.7–55.2%). Patients reported a <10% incidence rate per person month of all HCRU events. Conclusions: This first longitudinal real-world US study indicates a positive trend in Hb, fatigue, and cognition with limited HCRU during pegcetacoplan treatment in adults with PNH.

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Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria—a pilot study (ePRO-AA-PNH)

Cited by 3 publications

References 35 publications

Perspective and Experience of Patients with Aplastic Anemia on Medication Adherence

Perspective and Experience of Patients with Aplastic Anemia on Medication Adherence

Application of Intelligent Management Model Based on Electronic Patient-Reported Outcome During Immunotherapy in Patients with Gastric Cancer: A Single-Center Retrospective Study

Real-World Study of US Adults with Paroxysmal Nocturnal Hemoglobinuria Treated with Pegcetacoplan

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