Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

Background Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction. Methods Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training. Results A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program. Conclusions Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

Evaluating the Use of Telepractice for Bottle-Feeding Assessments

There is currently limited evidence supporting the use of telepractice to conduct bottle-feeding assessments. This study aimed to investigate the inter-rater reliability of bottle-feeding assessments conducted via synchronous telepractice (real-time videoconferencing). Secondary aims were to investigate parent and clinician satisfaction. Bottle-feeding skills of 30 children (aged 1 month–2 years) were simultaneously assessed by a telepractice SP (T-SP) at a remote location and an in-person SP (IP-SP) at the family home. A purpose-designed assessment form was used to evaluate: (1) developmental level (screen only), (2) state, color, and respiration, (3) oral motor skills, (4), infant oral reflexes, (5) tongue tie (screen only), (6) non-nutritive suck, (7) bottle-feeding, (8) overall feeding skills and (9) recommendations. Results of the T-SP and IP-SP assessments were compared using agreement statistics. Parents reported perceptions of telepractice pre and post session, and also rated post-session satisfaction. The telepractice SP completed a satisfaction questionnaire post-appointment. The majority of assessment components (45/53, 85%) met the agreement criteria (≥80% exact agreement). Difficulties were noted for the assessment of palate integrity, gagging during non-nutritive suck assessment, and 6 components of the tongue tie screen. Parent and clinician satisfaction was high; SPs reported that they would offer telepractice services to 93% of families again in the future. Overall, the results demonstrated that most components of a bottle-feeding assessment could be reliably completed via synchronous telepractice in family homes. However, further research is required to improve the reliability of some intra-oral assessment components.

Mindfulness-based waiting room intervention for osteopathic manipulation patients: a pilot randomized controlled trial

Context Osteopathic manipulative treatment (OMT) and mindfulness-based interventions are both efficacious pain management strategies. Combining these two therapeutic approaches may offer added benefits to pain patients. Objectives To determine whether engaging in a mindfulness-based intervention before an OMT session improved OMT session outcomes. Methods Patients seeking OMT care from a single osteopathic physician at an integrative health clinic were recruited for this pilot randomized, controlled trial at an academic hospital. All patients scheduled for osteopathic structural evaluation and treatment with the provider from March 2019 to September 2019 were eligible and invited to participate during the reminder call before their visit. Participants were randomly assigned to listen to one of two audio recordings matched for length: (1) the history of osteopathic medicine, or (2) a guided mindfulness meditation practice. Patients completed surveys including numeric rating scales to measure mindfulness and embodied safety (a self-reported feeling that the patient’s body was in a safe place) immediately before and after listening to the audio recording. A global pain rating report along with a sensation manikin (a digital human figure silhouette overlaid with a grid of 786 “sensation” pixels) capturing both pleasant and unpleasant sensation were collected before and after the OMT session. Session satisfaction was also assessed with a single survey item. Results A total of 57 participants were enrolled in the study; however, 18 were unable to listen to the full audio recording and were excluded from further analysis. The final study sample consisted of 39 patients, with 19 (48.7%) randomized to the history audio recording and 20 (51.3%) randomized to the mindfulness recording. The mean age of patients was 57 years (standard deviation, 11.75 years); 25 (64.1%) were women and 14 (35.9%) were men. The most common primary pain location was the neck (16; 41.0%), followed by back (12; 30.8%) and joint (5; 12.8%). Twenty (51.3%) participants were cancer patients; 19 (48.8%) did not have a cancer diagnosis. Practicing mindfulness before OMT increased patients’ sense of mindful connection to (p=0.036) and safety within (p=0.026) their bodies as well as their overall session satisfaction (p=0.037). Additionally, OMT paired with either study condition (mindfulness vs. history) decreased pain (p<0.001) and increased the ratio of pleasant to unpleasant sensations reported by patients (p<0.001). Finally, regardless of experimental condition (mindfulness vs. history), increased safety within the body predicted greater pain relief (β=−0.33, p=0.035) and larger sensation ratio changes (β=0.37, p=0.030) at the OMT session’s end. Additionally, increased mindful connection to the body predicted less pain (β=−0.41, p=0.005) at the session’s end. Conclusions This study demonstrated the feasibility of integrating a mindfulness-based intervention with OMT and results suggest that having patients listen to an audio-guided mindfulness practice while waiting for their OMT session may increase their mindful connection to and safety within their bodies as well as their session satisfaction. This study also provides empirical evidence that OMT may increase the distribution of pleasant sensations reported by pain patients while decreasing the distribution of unpleasant sensations reported.

THE EFFECTS OF SIMULATION-BASED EMPATHY ENHANCEMENT PROGRAM FOR CARER OF THE ELDERLY ON COUNSELLING

Empathy of the caregiver can influence both the caregiver’s performance and the receiver’s enhanced life. The aim of this study is to examine whether Simulation-based Empathy Enhancement program for the Carer of the Elderly (SEE-C) is effective in increasing care receivers’ session satisfaction and positive emotional change. We developed SEE-C by modifying the Dementia Live(TM) program and adding with a brief mindfulness. The effect on counselling was assessed using the Session Evaluation Questionnaire (SEQ), which is self-report tool asking the client about their experience with the session just ended. A total of 100 older adults living alone were interviewed by caregivers who experienced SEE-C (n=12) and by non-experienced (n=12). Participants in this study were randomly assigned to each of the two caregiver groups, and were interviewed about demographics, health and emotional status, and lifestyle using the same protocols. Analysis of covariance was conducted, controlling variables of age of subjects and caregivers’ months of career, which were found to differ significantly between the two groups. Among the four subcategories of SEQ, the experimental group reported significantly higher scores than the control group in three subcategories of session-depth (F(1, 96)=9.647, P=.002), session-smoothness (F(1, 96)=13.699, p&lt;.001), emotion-positive (F(1, 96)=18.056, p&lt;.001), with the exception of emotion-alertness (F(1, 96)=0.366, p=.546). These results suggest that SEE-C could have a positive impact on interviewing the elderly in terms of improving the capacity of the interviewer and raising the satisfaction of the interviewee.