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BACKGROUND: Persons with cognitive impairment may experience difficulties with language and cognition that interfere with their ability to communicate about health-related decision making. OBJECTIVE: We developed a visual elicitation technique to facilitate conversations about preferences concerning potential future supportive care needs and explored the utility of this technique in a qualitative interview study. METHODS: We conducted 15 online interviews with persons with mild cognitive impairment and mild to moderate dementia, using storytelling and a virtual tool designed to facilitate discussion about preferences for supportive care. Interviews were transcribed verbatim and analyzed using an inductive qualitative data analysis method. We report our findings with respect to several main themes. First, we considered participants' perspectives on supportive care. Next, we examined the utility of the tool for engaging participants in conversation through two themes: cognitive and communicative processes exhibited by participants; and dialogic interactions between the interviewer and the participant. RESULTS: With respect to participants' perspectives on supportive care, common themes included considerations relating to informal caregivers such as availability and burden, and the quality of care options such as paid caregivers. Other themes, such as the importance of making decisions as a family, considerations related to facing these challenges on one's own, and the fluid nature of decision making, also emerged. Common communicative processes included not being responsive to the question and unclear responses. Common cognitive processes included uncertainty and introspection, or self-awareness, of their cognitive abilities. Last, we examined dialogic interactions between the participant and the interviewer to better understand engagement with the tool. The interviewer was active in using the visualization tool to facilitate the conversation, and participants engaged with the interface to varying degrees. Some participants expressed greater agency and involvement through suggesting images, elaborating on their or the interviewer's comments, and suggesting icon labels. CONCLUSION: This article presents a visual method to engage older adults with cognitive impairment in active dialogue about complex decisions. Though designed for a research setting, the diverse communication and participant-interviewer interaction patterns observed in this study suggest that the tool might be adapted for use in clinical or community settings.
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BACKGROUND: Little research is available to provide practical guidance to health care providers for exercise preparticipation screening and referral of patients with interstitial lung diseases (ILD), including lymphangioleiomyomatosis (LAM), to participate in remote, unsupervised exercise programs. RESEARCH QUESTION: What exercise preparticipation screening steps are essential to determine whether a patient with LAM is medically appropriate to participate in a remote, unsupervised exercise program? STUDY DESIGN AND METHODS: Sixteen experts in LAM and ILD participated in a two-round modified Delphi study, ranking their level of agreement for ten statements related to unsupervised exercise training in LAM, with an a priori definition of consensus. Additionally, 60 patients with LAM completed a survey of the perceived risks and benefits of remote exercise training in LAM. RESULTS: Seven of the 10 statements reached consensus among experts. Experts agreed that an in-person clinical exercise test is indicated to screen for exercise-induced hypoxemia and prescribe supplemental oxygen therapy as indicated prior to initiating a remote exercise program. Patients with recent pneumothorax should wait to start an exercise program for at least 4 weeks until after resolution of pneumothorax and clearance by a physician. Patients with high cardiovascular risk for event during exercise, severe resting pulmonary hypertension, or risk for falls may be more appropriate for referral to a rehabilitation center. A LAM-specific remote exercise preparticipation screening tool was developed from the consensus statements and agreed upon by the panelists. INTERPRETATION: A modified Delphi study approach was useful to develop disease-specific recommendations for safety and preparticipation screening prior to unsupervised, remotely administered exercise in LAM. The primary product of this study is a clinical decision aid for providers to use when medically screening patients prior to participation in the newly launched LAMFit remote exercise program. FUNDING: This work was funded by an Established Investigator Award (LAM0130PB07-18) to MBB from The LAM Foundation.
ABSTRACT
Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.
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Decision Making , Dementia , Humans , Caregivers , UncertaintyABSTRACT
RATIONALE: Alternatives to center-based pulmonary rehabilitation are needed to improve patient access to this important therapy. A critical challenge to overcome is how to maximize safety of unsupervised exercise for at-risk patients. We investigated if a novel remote monitoring-enabled mobile health (mHealth) program is safe, feasible, and effective for patients who experience exercise-induced hemoglobin desaturation. METHODS: An interstitial lung disease (ILD) commonly associated with pronounced exercise desaturation was investigated - the rare, female-predominant ILD lymphangioleiomyomatosis (LAM). Over a 12-week program, hemoglobin saturation (SpO2) was continuously recorded during all home exercise sessions. Intervention effects were assessed with 6-min walk test (6MWT), maximal cardiopulmonary exercise test (CPET), lower extremity computerized dynamometry, pulmonary function tests, and health-related quality of life (QoL) surveys. Safety was assessed by blood biomarkers of systemic inflammation and cardiac wall stress, and incidence of adverse events. RESULTS: Fifteen LAM patients enrolled and 14 completed the intervention, with high adherence to aerobic (87 ± 15%) and strength (87 ± 12%) training components. An innovative characterization of exercise training SpO2 revealed that while mild-to-moderate desaturation was common during home workouts, participants were able to self-adjust exercise intensity and supplemental oxygen levels to maintain recommended exercise parameters. Significant improvements included 6MWT distance (+36 ± 34 m, p = 0.003), CPET time (p = 0.04), muscular endurance (p = 0.008), QoL (p = 0.009 to 0.03), and fatigue (p = 0.001 to 0.03). Patient acceptability and satisfaction indicators were high, blood biomarkers remained stable (p > 0.05), and no study-related adverse events occurred. CONCLUSION: A remote monitoring-enabled home exercise program is a safe, feasible, and effective approach even for patients who experience exercise desaturation.
