RESUMEN
BACKGROUND: The PARADIGM consortium aimed to make patient engagement in the development and lifecycle management of medicines easier and more effective for all, with the development of new tools that fulfil robustly defined gaps where engagement is suboptimal. AIMS: To generate an inventory of gaps in patient engagement practices and process from existing global examples. METHODS: A large set of criteria for effective patient engagement previously defined via a multi-stakeholder Delphi method, were mapped under fourteen overarching themes. A gap analysis was then performed by twenty-seven reviewers against the resulting forty-six mapped criteria, on a sample of seventy initiatives from global databases. RESULTS: An inventory of gaps was identified including contextual information as to why the gaps exist. Our work identified general patterns where patient engagement was suboptimal-defined as; fragmented reporting and dissemination of patient engagement activities, and the fundamental principles defined in frameworks or guidance being poorly adhered to in actual practice. Specific gaps were identified for sixteen criteria. Additionally, it was also common to observe primary aspects of a process were addressed for a given criteria (i.e. training for roles and responsibilities) but a secondary context element was lacking (i.e. making training material accessible/understandable/meaningful to all participants). CONCLUSION: The results show that the evolution towards meaningful and systematic patient engagement is occurring, yet more importantly they provide clear directional insights to help enhance collaborative practices and co-design solutions. This targeted impact to catalyse a needs-oriented health system that integrates patient engagement at its core is essential.
Asunto(s)
Participación del Paciente , HumanosRESUMEN
AIM: To study the profile and burden of care in carers of patients with dementia who participated in the ALOIS program. A second objective was to evaluate caregiver satisfaction with the intervention, and changes in caregiver burden after participation in the program. DESIGN: Descriptive study of a specific intervention with no control group. SETTING: Primary care centers. PARTICIPANTS: Principal caregivers of patients with dementia. INTERVENTIONS: Group education sessions led by multidisciplinary teams comprising physicians, nurses and social workers. MEASURES: Caregiver profile; mean caregiver burden before and 3 months after the intervention (Caregiver Burden Interview, Zarit); caregivers' evaluation of the program. RESULTS: Participants N=245. Profile (N=173): women (83%), mean age 54.6 years (range, 26-83 years), married (82.5%), no formal education or primary school only (70.2%), housewife (54.3%), patient's daughter (58.5%). More than 60% of the caregivers received informal help, and fewer than 5% received formal help. 72.5% of the caregivers were considered overburdened at the start of the intervention, and the burden was greater in older caregivers. No differences were detected in caregiver relation to the patient, marital status or employment status of the caregiver. Participants rated the program very highly, emphasizing the opportunity to share their experiences with other caregivers and to obtain knowledge and skills that helped them provide better care. Pre- and postintervention burden of care was compared in 68 participants (54.76+/-15.16 points vs 53.02+/-12.55), and no statistically significant difference was found. CONCLUSIONS: The burden of care was high among caregivers, and increased as caregivers aged. Caregivers considered participation in the program to be highly useful. Care for caregivers should form part of care provided for patients with dementia.
