Introduction: Throughout life, a patient with severe haemophilia is confronted with many treatment-related challenges. Insight into self-management and non-adherence could improve the quality of care for these patients. The aim of this study was to provide an overview of the current evidence on self-management and adherence to prophylaxis in haemophilia. Method: Based on series of studies and published literature, aspects of treatment were explored: learning and performing self-infusion, achieving self-management skills in adolescence, adherence issues and coping with haemophilia. Evidence-based and age-group-specific recommendations for haemophilia professionals were formulated. Results: Nearly, all severe haemophilia patients and parents were able to perform self-infusion and the quality level of infusion skills was acceptable. Learning self-infusion was generally initiated before the onset of puberty and full self-management was obtained 10 years later. Adherence was defined using a Delphi consensus procedure and was determined by skipping, dosing and timing of infusions. Adherence levels varied according to age, with highest levels in children (1–12 years) and the lowest among 25–40 years. Adherence to prophylaxis was acceptable (43%), yet 57% of the population struggled with prophylaxis. Qualitative research showed that the position of prophylaxis in life is the main driver of adherence. This position is influenced by acceptance and self-management skills. Regarding coping with haemophilia, the majority of patients used a problem-focused approach. Conclusion: Self-management and adherence to prophylaxis vary during the life span. Acceptance of the disease and self-management skills were important aspects that may require tailored professional support.
Background: The immunization uptake rates in Pakistan are much lower than desired. Major reasons include lack of awareness, parental forgetfulness regarding schedules, and misinformation regarding vaccines. In light of the COVID-19 pandemic and distancing measures, routine childhood immunization (RCI) coverage has been adversely affected, as caregivers avoid tertiary care hospitals or primary health centers. Innovative and cost-effective measures must be taken to understand and deal with the issue of low immunization rates. However, only a few smartphone-based interventions have been carried out in low- and middle-income countries (LMICs) to improve RCI. Objective: The primary objectives of this study are to evaluate whether a personalized mobile app can improve children’s on-time visits at 10 and 14 weeks of age for RCI as compared with standard care and to determine whether an artificial intelligence model can be incorporated into the app. Secondary objectives are to determine the perceptions and attitudes of caregivers regarding childhood vaccinations and to understand the factors that might influence the effect of a mobile phone–based app on vaccination improvement. Methods: A mixed methods randomized controlled trial was designed with intervention and control arms. The study will be conducted at the Aga Khan University Hospital vaccination center. Caregivers of newborns or infants visiting the center for their children’s 6-week vaccination will be recruited. The intervention arm will have access to a smartphone app with text, voice, video, and pictorial messages regarding RCI. This app will be developed based on the findings of the pretrial qualitative component of the study, in addition to no-show study findings, which will explore caregivers’ perceptions about RCI and a mobile phone–based app in improving RCI coverage. Results: Pretrial qualitative in-depth interviews were conducted in February 2020. Enrollment of study participants for the randomized controlled trial is in process. Study exit interviews will be conducted at the 14-week immunization visits, provided the caregivers visit the immunization facility at that time, or over the phone when the children are 18 weeks of age. Conclusions: This study will generate useful insights into the feasibility, acceptability, and usability of an Android-based smartphone app for improving RCI in Pakistan and in LMICs.
In Nederland gebruiken 65 plussers drie keer zoveel medicijnen als de gemiddelde Nederlander. Voor 75 plussers geldt dat zij vijf keer zoveel medicijnen gebruiken. In combinatie met leeftijdsgerelateerde natuurlijke veranderingen in het metabolisme, verminderde cognitie, multi-morbiditeit, verminderde nierfunctie, polyfarmacie en verminderde capaciteit tot herstel, zijn ouderen kwetsbaar voor medicatiegerelateerde problemen. Thuiszorg cliënten zijn doorgaans ouder dan 65 jaar, waardoor er vaker sprake is van polyfarmacie en verminderde cognitie. Daarom bevinden zich vooral in deze populatie cliënten, die kwetsbaar zijn voor medicatiegerelateerde problemen. Verschillende studies hebben aangetoond dat huisartsen en apothekers een bijdrage kunnen leveren aan het herkennen van medicatiegerelateerde problemen bij hun patiënten. Er is echter weinig aandacht besteed aan het vroegsignaleren van observaties die kunnen duiden op een medicatie gerelateerd probleem door thuiszorgmedewerkers. In aanvulling op de huisarts en apotheker zouden thuiszorgmedewerkers, die hun patiënten op regelmatige basis thuis bezoeken, een bijdrage kunnen leveren aan het vroegsignaleren van potentiële medicatiegerelateerde problemen. Het doel van dit proefschrift is het: 1. verkennen van de opvattingen van ouderen ten aanzien van hun medicatie en hun medicatie management capaciteit gerelateerd aan zelfmanagement vaardigheden en cognitie; 2. beschrijven van de kennis, houding en medicatie management praktijk van thuiszorgmedewerkers; 3. vaststellen of een gestandaardiseerde observatielijst leidt tot vroegsignalering van potentiële medicatiegerelateerde problemen in de thuiszorg
