Development of a patient-reported outcome questionnaire for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PRO-AA/PNH).

BACKGROUND: The introduction of new therapy modalities has significantly improved the outcome of aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) patients. However, relatively little is known about the exact disease burden of AA/PNH since standardized assessments of symptoms including health-related quality of life (HRQoL) are frequently missing or inadequately designed for this rare patient group. We aimed to develop AA/PNH-specific questionnaires for self-reporting of symptoms, which could be included in electronic platforms for data collection and patient care. METHODS: By scoping review, we extracted any reported symptoms in AA/PNH and their prevalence from the literature (Phase I). Consensus rounds with patients and medical experts were conducted to identify core symptoms reported in the literature and to add missing items (Phase II). Ultimately, AA/PNH-specific patient-reported outcome (PRO) questionnaires including the selected measures were designed (Phase III). RESULTS: AA symptoms from 62 and PNH symptoms from 45 observational studies were extracted from the literature. Twenty-four patients and seven medical experts identified 11 core symptoms including HRQoL issues after three consensus rounds. Significant differences in the symptom ranking of patients versus medical experts could be observed. Therefore, patient- as well as expert-centered PRO questionnaires in AA and PNH were created following the concepts of validated instruments. CONCLUSION: The development of symptom self-reporting questionnaires for AA and PNH was feasible and the disease-specific PRO questionnaires can now be validated within a web-based workflow in a subsequent feasibility study.

Prevalence and Correlates of Cost-Related Medication Nonadherence to Immunosuppressive Drugs After Heart Transplantation: The International Multicenter Cross-sectional Bright Study.

BACKGROUND: Cost-related medication nonadherence (CRMNA) refers to not taking medications as prescribed because of difficulties paying for them. OBJECTIVES: The aims of this study were (1) to assess the prevalence of CRMNA to immunosuppressants in heart transplant recipients internationally and (2) to determine multilevel correlates (patient, center, and healthcare system levels) of CRMNA. METHODS: Using data from the cross-sectional international BRIGHT study, applying multistaged sampling, CRMNA was assessed via 3 self-report items in 1365 patients from 36 heart transplant centers in 11 countries. Cost-related medication nonadherence was defined as any positive answer on any of the 3 items. Healthcare system-level (ie, insurance coverage, out-of-pocket expenditures) and patient-level (ie, intention, perceived financial burden, cost as a barrier, a health belief regarding medication benefits, cost-related self-efficacy, and demographic factors) CRMNA correlates were assessed. Correlates were examined using mixed logistic regression analysis. RESULTS: Across all study countries, CRMNA had an average prevalence of 2.6% (range, 0% [Switzerland/Brazil] to 9.8% [Australia]) and was positively related to being single (odds ratio, 2.29; 95% confidence interval, 1.17-4.47), perceived financial burden (odds ratio, 2.15; 95% confidence interval, 1.55-2.99), and cost as a barrier (odds ratio, 2.60; 95% confidence interval, 1.66-4.07). Four protective factors were identified: white ethnicity (odds ratio, 0.37; 95% confidence interval, 0.19-0.74), intention to adhere (odds ratio, 0.44; 95% confidence interval, 0.31-0.63), self-efficacy (odds ratio, 0.54; 95% confidence interval, 0.43-0.67), and belief about medication benefit (odds ratio, 0.70; 95% confidence interval, 0.57-0.87). Regarding variability, 81.3% was explained at the patient level; 13.8%, at the center level; and 4.8%, at the country level. CONCLUSION: In heart transplant recipients, the CRMNA prevalence varies across countries but is lower than in other chronically ill populations. Identified patient-level correlates are novel (ie, intention to adhere, cost-related barriers, and cost-related self-efficacy) and indicate patient-perceived medication cost burden.

Heart transplant centers with multidisciplinary team show a higher level of chronic illness management - Findings from the International BRIGHT Study.

OBJECTIVES: The objectives of this study were to: (1) explore the proportion of HTx centers that have a multidisciplinary team and (2) assess the relationship between multidisciplinarity and the level of chronic illness management (CIM). BACKGROUND: The International Society for Heart and Lung Transplantation (ISHLT) recommends a multidisciplinary approach in heart transplant (HTx) follow-up care but little is known regarding the proportion of HTx centers that meet this recommendation and the impact on patient care. HTx centers with a multidisciplinary team may offer higher levels of CIM, a care model that has the potential to improve outcomes after HTx. METHODS: We conducted a secondary analysis of the BRIGHT study, a cross-sectional study in 11 countries. Multidisciplinarity in the 36 HTx centers was assessed through HTx director reports and was defined as having a team that was composed of physician(s), nurse(s), and another healthcare professional (either a social worker, psychiatrist, psychologist, pharmacist, dietician, physical therapist, or occupational therapist). CIM was assessed with the Patient Assessment of Chronic Illness Care (PACIC). Multiple linear regression assessed the relationship between multidisciplinarity and the level of CIM. RESULTS: Twenty-nine (80.6%) of the HTx centers had a multidisciplinary team. Furthermore, multidisciplinarity was significantly associated with higher levels of CIM (ß = 5.2, P = 0.042). CONCLUSION: Majority of the HTx centers follows the ISHLT recommendation for a multidisciplinary approach. Multidisciplinarity was associated with CIM and point toward a structural factor that needs to be in place for moving toward CIM.

Medication non-adherence as a critical factor in the management of presumed resistant hypertension: a narrative review.

AIMS: Medication non-adherence is a crucial behavioural risk factor in hypertension management. Forty-three to 65.5% of patients with presumed resistant hypertension are non-adherent. This narrative review focuses on the definition of adherence/non-adherence, measurement of medication adherence, and the management of medication non-adherence in resistant hypertension using multilevel intervention approaches to prevent or remediate non-adherence. METHODS AND RESULTS: A review of adherence and resistant hypertension literature was conducted. Medication adherence consists of three different yet related dimensions: initiation, implementation, and discontinuation. To effectively measure medication non-adherence, a combination of direct and indirect methods is optimal. Interventions to tackle medication non-adherence must be integrated in multilevel approaches. Interventions at the patient level can combine educational/cognitive (e.g., patient education), behavioural/counselling (e.g., reducing complexity, cueing, tailoring to patient's lifestyle) and psychological/affective (e.g., social support) approaches. Improving provider competencies (e.g., reducing regimen complexity), implementing new care models inspired by principles of chronic illness management, and interventions at the healthcare system level can be combined. CONCLUSIONS: Improvement of patient outcomes in presumed resistant hypertension will only be possible if the behavioural dimensions of patient management are fully integrated at all levels.

Academic Service Partnerships: what do we learn from around the globe? A systematic literature review.

BACKGROUND: Academic Service Partnerships (ASPs) are structural linkages between universities and service entities that aim to share vision and collaboration, thereby improving patient care quality and encouraging innovation. PURPOSE: To identify structured ASPs in nursing worldwide and to describe their characteristics. METHOD: Systematic literature review of PubMed-, CINAHL-, PsycINFO-, and Embase- listed studies published up to August 31, 2010. ASPs were described in view of a predefined set of criteria. RESULTS: A total of 114 articles describing 119 ASPs were included. Of these, 85% were located in North America. The median duration of ASPs was 6 years (interquartile range, 2-6). The majority focused on education (86%) and clinical practice (50%). Community health facilities (57%) and hospitals (40%) were prime settings. Twenty-two percent of ASPs were defined by contracts, 3% were governed by bylaws, and 66% were part of strategic plans (28%). Funding sources were mentioned in 76%. However, although 66% of ASPs have been evaluated, the evaluations are generally neither consistent nor reliable. CONCLUSIONS: ASPs show variability in setup, and their development seems to be fueled by policy reports.