RESUMO
Importance: Undertreated cancer pain is a major public health concern among older adults in rural communities. Interventions to improve pain management among this vulnerable population are needed. Objective: To test the feasibility, acceptability, and changes in pain outcomes from exposure to an adapted intervention, Cancer Health Empowerment for Living without Pain (CA-HELP), to improve patients' communication about pain to their clinicians. Design, Setting, and Participants: Older adults with cancer (aged ≥65 years) who were residing in a noninstitutional rural setting and receiving outpatient care at a rural-based clinic in Tennessee were enrolled in the study, in which everyone received the intervention, in May 2022. All patients were given assessments at baseline and 1 week after intervention. Mean score differences were analyzed using 1-tailed paired sample t tests (α = .05). Data were analyzed in June 2022. Exposure: The adapted version of CA-HELP included an 18-page patient-facing workbook and a 30-minute telephone coaching call with a registered nurse to coach patients on pain education and communication techniques to discuss pain with their medical team. Main Outcomes and Measures: Feasibility was examined through accrual and completion rates. Acceptability was measured by helpfulness, difficulty, and satisfaction with the intervention. Changes in outcomes were measured using mean score differences from pre-post assessments of pain self-management, self-efficacy for communicating with clinicians about pain, patient-reported pain, and misconceptions about pain. Results: Among the 30 total participants, the mean (SD) age was 73.0 (5.1) years; 17 participants (56.7%) were female, 5 (16.7%) were Black or African American, 30 (100%) were non-Hispanic or non-Latino, 24 (80.0%) were White, 16 (53.3%) had less than a high school education, and 15 (50.0%) reported income less than $21â¯000 per year. Based on accrual and completion rates of 100%, this intervention was highly feasible. Fidelity rates for delivering intervention components (100%) and communication competence (27 participants [90%]) were also high. Regarding acceptability, all patients rated the intervention as helpful, with the majority (24 participants [80%]) rating it as "very helpful." Most patients rated the intervention as "not at all difficult" (27 participants [90%]), enjoyed participating (21 participants [70%]), and reported being "very satisfied" (25 participants [83.3%]). Pre-post changes in outcomes suggested significant improvements in pain self-management and self-efficacy for communicating with clinicians about pain, as well as significant reductions in patient-reported pain and pain misconceptions. Conclusions and Relevance: In this case-series study of CA-HELP, results suggested the adapted version of CA-HELP was feasible and acceptable and showed changes in pain-related outcome measures among older adults with cancer in a rural setting.
Assuntos
Neoplasias , Manejo da Dor , População Rural , Autogestão , Humanos , Idoso , Feminino , Masculino , Autogestão/métodos , População Rural/estatística & dados numéricos , Manejo da Dor/métodos , Neoplasias/complicações , Neoplasias/psicologia , Neoplasias/terapia , Dor do Câncer/terapia , Dor do Câncer/psicologia , Tennessee , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Educação de Pacientes como Assunto/métodosRESUMO
BACKGROUND: Few clinical trials include a detailed protocol for stakeholder engagement in the design and execution of the clinical trial. Deliver-EE is a pragmatic clinical trial to assess how different types of home-delivered meals can affect older adults' health and well-being. We present the protocol for stakeholder engagement in this national, multi-site trial and initial findings from our efforts. METHODS: Twenty-nine participants were recruited to two stakeholder advisory panels. The "Lived Experience Perspectives" panel is defined as the clients, caregivers, and meal delivery drivers with first-hand knowledge and lived experiences with meal delivery. The "System Perspectives" panel is defined as representatives from the larger financial, clinical, regulatory, and operational environments in which meal delivery to homebound older adults operate. Together, these two groups holistically represent interested parties that coordinate the interdependent elements of meal delivery to homebound older adults in order to: 1) inform our understanding of what matters most to older adults, their families, and the larger health and social care systems; 2) provide strategies to overcome challenges conducting the study; 3) enhance dissemination and uptake of study findings; and 4) identify opportunities for future research. RESULTS: Although stakeholder partners share a common goal of using home-delivered meals as a method to improve outcomes for homebound older adults, individuals have different goals for participating as advisors in this research. CONCLUSIONS: Understanding what individual stakeholders hope to gain from their participation is critical in designing an effective engagement protocol and critical for meaningful and rigorous stakeholder engagement in clinical trials.
Assuntos
Pacientes Domiciliares , Refeições , Participação dos Interessados , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Cuidadores , Pesquisa Comparativa da Efetividade , Serviços de Alimentação/organização & administração , Serviços de Assistência Domiciliar/organização & administração , Vida Independente , Projetos de PesquisaRESUMO
Background and Objectives: Among the older adult population living in the rural United States, undertreated cancer pain is very common. The need for interventions targeting pain management communication between older adults with cancer in rural communities and their doctors outpaces the current evidence base. Adaptation of existing pain interventions may improve the speed at which clinicians can respond to pain in this vulnerable population. Research Design and Methods: The Cancer Health Empowerment for Living without Pain (Ca-HELP) is an evidence-based communication tool that coaches patients to communicate about pain by asking questions, making requests, and signaling distress to their physicians in order to achieve improved pain control. Guided by the Method for Program Adaptation through Community Engagement (M-PACE) model, which utilizes detailed stakeholder feedback to guide the adaptation of an intervention for an appropriate target audience, we proactively adapted the Ca-HELP and its delivery for use among geriatric cancer patients living in rural settings using qualitative feedback from patients, informal caregivers, and providers as a planned step in a multiphase pilot study. Results: All stakeholders agreed that the Ca-HELP was a promising candidate intervention to improve pain among older adults with cancer. They suggested modifications to the delivery, context, and content of the intervention. A multidisciplinary team of nurse leaders and researchers evaluated stakeholder feedback and recommendations before determining which adaptations were made. Adaptations were cataloged and reported using the Framework for Reporting Adaptations and Modifications-Enhanced model. Discussion and Implications: Our multistakeholder team proactively modified the Ca-HELP intervention tool using end-user feedback with a goal to optimize fit for use by older adults with cancer in rural settings without compromising the active ingredients. Documenting and reporting modifications to interventions are critical to their implementation and will lay the groundwork for further testing of the efficacy of the adapted Ca-HELP intervention.