RESUMEN
BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.
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Cuidadores , Cuidados Paliativos , Adulto , Humanos , Cuidadores/psicología , Personal de Salud , Transición del Hospital al Hogar , Cuidados Paliativos/métodosRESUMEN
STUDY OBJECTIVES: The aim of the Improving CPAP Adherence Program was to assess the impact of a multidimensional treatment framework based on shared decision-making, patient activation, and caregiver engagement on improving long-term positive airway pressure (PAP) adherence in patients newly diagnosed with obstructive sleep apnea. METHODS: In this pilot study, patients aged ≥ 18 years with a new obstructive sleep apnea diagnosis who qualified for PAP treatment and lived with a caregiver were randomly assigned to receive either the multidimensional treatment (intervention, n = 28) or unrelated education (control group, n = 32). All patients and their caregiver participated in a group visit. The intervention group attended 4 structured sessions: interactive education, peer coaching, hands-on experience, and a semistructured motivational interview. The control group was educated on physical activity and lifestyle only. Objective PAP adherence data were obtained at baseline (day that they received PAP machine to group visit), group visit to 3 months, and 3-6 months. RESULTS: In an age-adjusted model, the mean daily use of PAP increased significantly over the 3 time periods (P = .03). Intervention-arm participants gained a mean 1.23 hours (95% confidence interval, 0.33-2.13) in PAP mean daily use between 3 and 6 months vs those in the control arm (P = .008). We saw no difference in the percentage of PAP adherence across time between the 2 arms. CONCLUSIONS: A multifaceted patient-centered intervention with caregiver engagement improved PAP adherence vs control levels, a beneficial effect sustained for the 6 months. Our findings suggest that caregivers, with the appropriate training, can improve patients' PAP adherence by providing a socially supportive environment. CITATION: Khan NNS, Todem D, Bottu S, Badr MS, Olomu A. Impact of patient and family engagement in improving continuous positive airway pressure adherence in patients with obstructive sleep apnea: a randomized controlled trial. J Clin Sleep Med. 2022;18(1):181-191.
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Entrevista Motivacional , Apnea Obstructiva del Sueño , Adolescente , Presión de las Vías Aéreas Positiva Contínua , Humanos , Cooperación del Paciente , Proyectos Piloto , Apnea Obstructiva del Sueño/terapiaRESUMEN
Dravet syndrome (DS) is an intractable developmental and epileptic encephalopathy significantly impacting affected children and their families. A novel, one-time, adeno-associated virus (AAV)-mediated gene regulation therapy was designed to treat the underlying cause of DS, potentially improving the full spectrum of DS manifestations. To ensure the first-in-human clinical trial addresses meaningful outcomes for patients and families, we examined their perspectives, priorities, goals, and desired outcomes in the design phase through a mixed methods approach (quantitative and qualitative). We conducted a non-identifiable parent caregiver survey, shared through a patient advocacy organization (nâ¯=â¯36 parents; children age ≤6â¯years). Parents were also engaged via three group discussions (nâ¯=â¯10; children age 2-20â¯years) and optional follow-up in-depth individual interviews (nâ¯=â¯6). Qualitative data analysis followed an inductive interpretive process, and qualitative researchers conducted a thematic analysis with a narrative approach. Survey results revealed most children (94%) were diagnosed by age 1, with onset of seizures at mean age 6.2â¯months and other DS manifestations before 2â¯years. The most desired disease aspects to address with potential new disease-modifying therapies were severe seizures (ranked by 92% of caregivers) and communication issues (development, expressive, receptive; 72-83%). Qualitative results showed the need for trial outcomes that recognize the impact of DS on the whole family. Parents eventually hope for trials including children of all ages and were both excited about the potential positive impact of a one-time disease-modifying therapy and mindful of potential long-term implications. Participants reflected on the details and risks of a clinical trial design (e.g., sham procedures) and described the different factors that relate to their decision to participate in a trial. Their main aspirations were to stop neurodevelopmental stagnation, to reduce seizures, and to reduce the impact on their families' wellbeing. To our knowledge, this is the first study within a patient-oriented research framework that specifically explored parents' needs and perceptions regarding clinical trials of a potential disease-modifying therapy for children with a severe, developmental disease, such as DS.
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Epilepsias Mioclónicas , Síndromes Epilépticos , Espasmos Infantiles , Adolescente , Adulto , Cuidadores , Niño , Preescolar , Epilepsias Mioclónicas/genética , Epilepsias Mioclónicas/terapia , Humanos , Lactante , Padres , Adulto JovenRESUMEN
STUDY OBJECTIVES: The aim of this qualitative analysis was to identify obstructive sleep apnea (OSA) patients' preferences, partner experiences, barriers and facilitators to positive airway pressure (PAP) adherence, and to assess understanding of the educational content delivered and satisfaction with the multidimensionally structured intervention. METHODS: A qualitative analysis was conducted on 28 interventional arm patients with a new diagnosis of OSA. They received a one-on-two semistructured motivational interview as the last part of a 60- to 90-minute in-person educational group intervention. The 10- to 15-minute interview with the patient and caregiver was patient-centered and focused on obtaining the personal and emotional history and providing support. We also assessed understanding of the OSA training plan, their commitment to it, and their goals for it. RESULTS: We identified four themes: OSA symptom and diagnosis, using the PAP machine, perceptions about the group visit, and factors that determine adherence to PAP. Patients experienced positive, negative, or mixed emotions during the journey from symptoms of OSA to PAP adherence. CONCLUSIONS: Our findings suggest that patients' and caregivers' positive experiences of PAP could be enhanced by a patient-centered interaction and that it was important to explicitly address their fears and concerns to further enhance use of PAP. Not only could caregiver support play a role in improving PAP adherence but also the peer coaching session has the potential of providing a socially supportive environment in motivating adherence to PAP treatment.
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Presión de las Vías Aéreas Positiva Contínua/psicología , Presión de las Vías Aéreas Positiva Contínua/estadística & datos numéricos , Entrevista Motivacional/métodos , Cooperación del Paciente/psicología , Cooperación del Paciente/estadística & datos numéricos , Apnea Obstructiva del Sueño/terapia , Cuidadores/psicología , Presión de las Vías Aéreas Positiva Contínua/métodos , Estudios de Evaluación como Asunto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pacientes/psicología , Apnea Obstructiva del Sueño/psicologíaRESUMEN
INTRODUCTION: Multimorbidity increases care needs and primary care use among people with chronic diseases. The Concerto Health Program (CHP) has been developed to optimise chronic disease management in primary care services. However, in its current version, the CHP primarily targets clinicians and does not aim to answer directly patients' and their informal caregivers' needs for chronic disease management. Various studies have shown that interventions that increase patient activation level are associated with better health outcomes. Furthermore, educational tools must be adapted to patients and caregivers in terms of health literacy and usability. This project aims to develop, implement and evaluate a user-centred, multifunctional and personalised eHealth platform (CONCERTO+) to promote a more active patient role in chronic disease management and decision-making. METHODS AND ANALYSIS: This project uses a collaborative research approach, aiming at the personalisation of CHP through three phases: (1) the development of one module of an eHealth platform based on scientific evidence and user-centred design; (2) a feasibility study of CONCERTO+ through a pilot cluster randomised controlled trial where patients with chronic diseases from a primary healthcare practice will receive CONCERTO+ during 6 months and be compared to patients from a control practice receiving usual care and (3) an analysis of CONCERTO+ potential for scaling up. To do so, we will conduct two focus groups with patients and informal caregivers and individual interviews with health professionals at the two study sites, as well as health care managers, information officers and representatives of the Ministry of Health. ETHICS AND DISSEMINATION: This study received ethical approval from Ethics Committee of Université Laval. The findings will be used to inform the effectiveness of CONCERTO+ to improve management care in chronic diseases. We will disseminate findings through presentations in scientific conferences and publication in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT03628963; Pre-results.