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Background: Lack of adherence to Oral antineoplastic agents (OAAs) treatment has important clinical, social and economic consequences. Objective: To develop and validate a novel instrument for assessing adherence to OAAs, based on the reported experiences of people with cancer in relation to their treatment and the opinions of the healthcare professionals who care for them. Methods: We performed a multicenter validation study of a scale designed to assess adherence to OAAs. First, a steering committee developed the items for an initial scale, based on the results of a qualitative study that evaluated patients' and professionals' experiences with this treatment. We then assessed the validity and reliability of the initial scale in a sample of 268 outpatients with cancer who received their OAAs from four Spanish hospitals. Results: The mean age of the sample of 268 outpatients was 64.1 (standard deviation [SD] 12.4) years, and 47% of participants were women. With the results of this analysis, we developed the EXPAD-ANEO scale, which has 2 factors, one for beliefs and expectations and another for behavior. Both factors explain 52% of the explained common variance. Good reliability was obtained, with a McDonald's omega of 0.7 for the first factor and 0.6 for the second factor. The fit indices were optimal (Root Mean Square Error of Approximation = 0.02, Comparative Fit Index = 0.99, Tucker Lexis Index = 0.99 and Standardized Root Mean Squared Residual = 0.03), which verifies the appropriateness of the items to the model. We measured EXPAD-ANEO criterion validity against pill count, obtaining a specificity of 80%. We measured convergent validity with the Morisky-Green test and found a significant association (p < 0.001). We measured divergent validity with questions on health literacy from the 16-item European Health Literacy Survey and found no correlation (p = 0.153). Conclusion: EXPAD-ANEO is the first validated instrument for evaluating patients' experiences with and adherence to OAAs, providing valuable information that can help health professionals to establish individual strategies or collective programs for improving therapeutic results and reducing healthcare costs.
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Allogeneic hematopoietic stem cell transplantation (HSCT) represents the best therapeutic option for many patients with acute myeloid leukemia (AML). However, relapse remains the main cause of mortality after transplantation. The detection of measurable residual disease (MRD) by multiparameter flow cytometry (MFC) in AML, before and after HSCT, has been described as a powerful predictor of outcome. Nevertheless, multicenter and standardized studies are lacking. A retrospective analysis was performed, including 295 AML patients undergoing HSCT in 4 centers that worked according to recommendations from the Euroflow consortium. Among patients in complete remission (CR), MRD levels prior to transplantation significantly influenced outcomes, with overall (OS) and leukemia free survival (LFS) at 2 years of 76.7% and 67.6% for MRD-negative patients, 68.5% and 49.7% for MRD-low patients (MRD < 0.1), and 50.5% and 36.6% for MRD-high patients (MRD ≥ 0.1) (p < 0.001), respectively. MRD level did influence the outcome, irrespective of the conditioning regimen. In our patient cohort, positive MRD on day +100 after transplantation was associated with an extremely poor prognosis, with a cumulative incidence of relapse of 93.3%. In conclusion, our multicenter study confirms the prognostic value of MRD performed in accordance with standardized recommendations.
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Background: Several factors can influence adherence to orally administered antineoplastics, including fear or anxiety resulting from situations such as the COVID-19 pandemic. The aim of this study was to analyse the influence of these patients' experiences on adherence to orally administered antineoplastics. Methods: Cross-sectional study in four hospitals including >18 year old cancer patients receiving orally administered antineoplastics during the first half of 2021. Data were collected from medical records and through telephone interviews. Adherence was assessed through the prescription refill records and pill counts. Patients' fear resulting from the pandemic was assessed by means of a structured questionnaire using a 5-point Likert-type scale. Results: Our sample compr BARCELONAised 268 patients (54% men) with a mean age of 64 years (SD 12). More than 15% had experienced afraid and 5% had experienced a dangerous situation when attending hospital, 17% felt they had received less care, and 30% preferred telepharmacy. Adherence measured by pill count was 69.3% and 95.5% according to prescription refill records. Patients who had experienced fear or anxiety when attending hospital were less adherent (aOR 0.47, 95% CI 0.23−0.96, p = 0.039). Conclusion: The fear experienced by some patients has affected adherence to treatment.
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Lack of adherence constitutes one of the most important challenges in patients undergoing treatment with oral antineoplastic drugs (ANEO). Understanding cancer patients' experiences with respect to their medication is key for optimizing adherence and therapeutic results. We aimed to assess the medication experience (ME) in patients with cancer in treatment with ANEO, to describe the barriers and facilitators related to the disease and its treatment and to compare them with the healthcare professionals' perspectives. We carried out an exploratory qualitative study in the University Hospital of San Juan de Alicante, Spain. Three focus groups and two nominal group discussions were conducted with 23 onco-hematological patients treated with ANEO and 18 health professionals, respectively. The data were analyzed using content analyses and were eventually triangulated. The most impactful aspects in patients' ME were the presence of adverse effects; lack of information about treatment; beliefs, needs and expectations regarding medications; social and family support; and the relationship with the health professionals. Both patients and professionals agreed on considering the negative side effects and the information about treatment as the main barriers and facilitators of adherence, respectively, although the approaches differed between both profiles. The professionals offered a more technical vision while patients prioritized the emotional burden and motivation associated with the disease and medication. This study allowed us to understand the real-life experiences of patients being treated with ANEO and explore the factors which had an impact on adherence to treatment. This understanding enables professionals to have a positive influence on patients' behavior and provide individualized care plans. Pharmacists' assistance is relevant to support patients' adherence and self-management.
Subject(s)
Health Personnel , Motivation , Focus Groups , Humans , Medication Adherence , Qualitative Research , SpainABSTRACT
OBJECTIVES: To assess the long-term effectiveness of pirfenidone in idiopathic pulmonary fibrosis (IPF) treatment and to establish its adverse effects profile. METHODS: Retrospective observational study in patients with IPF who initiated treatment with pirfenidone between 2011 and 2016. We collected demographic variables (age, sex); date of first and last treatment; reason for discontinuation; pulmonary function measures (forced vital capacity (FVC), carbon monoxide diffusion capacity (DLCO), and 6 min walk test (6MWT)) at treatment initiation (baseline) and at 1, 2 and 3 year follow-up; adherence to pirfenidone treatment; recorded adverse effects; and mortality. RESULTS: Thirty-one patients treated with pirfenidone were included; mean±SD age was 69±8 years, 74% were men, and 59% had a smoking history. Mean baseline values were: FVC 2.43±0.66 L (61.8±12.1%); DLCO 46.1±19.4%; and 6MWT 334±125 m. Median duration of treatment was 14±13 months, and treatment was discontinued in 58% of patients. The most frequently observed adverse effects were gastrointestinal disturbances and photosensitivity. Twenty (65%) patients were evaluated at 1 year, when mean FVC was 2.41±0.86 L (64.7±20.3%); DLCO 50.8±26.8%; and 6MWT 341±139 m. At 2 years' follow-up, 11 patients (36%) who were still taking pirfenidone were evaluated. Mean FVC was 2.34±0.79 L (66.2±14.7%); DLCO 50.0±28.3%; and 6MWT 265±121 m. At 3 years, five patients were still taking the treatment. Mean FVC was 2.71±0.84 L (71.0±24.7%); DLCO 52.6±26.7%; and 6MWT 286±139 m. Nineteen per cent of patients were non-adherent to treatment. CONCLUSIONS: Pirfenidone seems to be effective for long-term control of IPF despite substantial variability in response among individual patients. The most frequent adverse effects were digestive and cutaneous, prompting in some cases a reduction in dose or even discontinuation of the treatment.