Post-Cures Act: Implications for Nurse Practitioners

The Cures Act of April 2021, gives the public full and immediate access to their medical records in 8 different categories, with 2 exemptions: civil and criminal suits and administrative actions and psychotherapy session notes. There is language prohibiting an individual or organization from blocking this access. This article examines how this legislation impacts nurse practitioners building on and expanding their relationship with their patients and how critical it is that patients become full participating members in their care. The level of patient engagement and their activation as partners are critical for patients to fully benefit from this increased access. Obstacles to increasing patient engagement include low health and computer literacy of patients, providers not encouraging their patients to become active in their care, system-related barriers, such as the organization having other priorities than increasing patient engagement, and community factors to include media that do not address cultural aspects. Nurse practitioners need to continue to maintain a positive, respectful, and supportive milieu in which the patient, the family, and health care team function in a partnership, one in which there is shared decision making with the patient at the center, encouragement of portal usage, and dealing with health and computer literacy and any other barriers to developing this partnership.<br />(c) 2022 Elsevier Inc. All rights reserved.

The Patient Activation Measure (PAM) and the pandemic: Predictors of patient activation among Australian health consumers during the COVID-19 pandemic.

BACKGROUND: Preventative healthcare is crucial for improving individual patient outcomes and is integral to sustainable health systems. The effectiveness of prevention programs is enhanced by activated populations who are capable of managing their own health and are proactive to keep themselves well. However, little is known about the level of activation among people drawn from general populations. We used the Patient Activation Measure (PAM) to address this knowledge gap. METHODS: A representative, population-based survey of Australian adults was conducted in October 2021 during the Delta strain outbreak of the COVID-19 pandemic. Comprehensive demographic information was collected, and the participants completed the Kessler-6 psychological distress scale (K6) and PAM. Multinomial and binomial logistic regression analyses were performed to determine the effect of demographic factors on PAM scores, which are categorised into four levels: 1-participants disengaged with their health; 2-becoming aware of how to manage their health; 3-acting on their health; and 4-engaging with preventative healthcare and advocating for themselves. RESULTS: Of 5100 participants, 7.8% scored at PAM level 1; 13.7% level 2, 45.3% level 3, and 33.2% level 4. The mean score was 66.1, corresponding to PAM level 3. More than half of the participants (59.2%) reported having one or more chronic conditions. Respondents aged 18 to 24 years old were twice as likely to score PAM level 1 compared with people aged 25-44 (p < .001) or people aged over 65 years (p < .05). Speaking a language other than English at home was significantly associated with having low PAM (p < .05). Greater psychological distress scores (K6) were significantly predictive of low PAM scores (p < .001). CONCLUSION: Overall, Australian adults showed high levels of patient activation in 2021. People with lower incomes, of younger age, and those experiencing psychological distress were more likely to have low activation. Understanding the level of activation enables targeting sociodemographic groups for extra support to increase the capacity to engage in prevention activities. Conducted during the COVID-19 pandemic, our study provides a baseline for comparison as we move out of the pandemic and associated restrictions and lockdowns. PATIENT OR PUBLIC CONTRIBUTION: The study and survey questions were co-designed with consumer researchers from the Consumers Health Forum of Australia (CHF) as equal partners. Researchers from CHF were involved in the analysis of data and production of all publications using data from the consumer sentiment survey.

Accessible Care with High Patient Satisfaction: Telemedicine Use in Sickle Cell Disease.

Background: The COVID-19 pandemic necessitated a rapid transition to telemedicine, providing a critical opportunity to study telemedicine satisfaction and usability in patients with sickle cell disease (SCD). Methods: A cross-sectional survey was completed by 99 adult SCD patients who participated in at least one telemedicine visit between March and July 2020. Telemedicine satisfaction and usability were assessed with the Telemedicine Satisfaction Questionnaire (TSQ) and System Usability Scale (SUS), respectively. Preference for video visits was assessed with a 1-10 rating scale, with 10 indicating the highest preference. Measures of anxiety, depression, and patient activation were also assessed. Linear and logistic regressions were performed to evaluate for socioeconomic and psychosocial correlates of telemedicine satisfaction, usability, and preference. Results: Participants were 72% women, with a mean age of 39 years. The median (interquartile range [IQR]) TSQ was 56 (52-64) out of 70, indicating high satisfaction. The median (IQR) SUS was 72.5 (62.5-82.5) out of 100, indicating above average usability. Participants tended to prefer video visits for regular care (median [IQR] rating of 7 [5-9]) but not for management of acute pain (median [IQR] rating of 4 [2-8]). Neither satisfaction nor usability was associated with age or mental health. Telemedicine usability was positively associated with having private insurance compared with public insurance. Higher scores on both satisfaction and usability were associated with higher patient activation. Conclusions: Adults with SCD report good usability and high satisfaction with telemedicine, across multiple demographic groups. Therefore, telemedicine has valuable potential to improve access to high-quality care for these patients.

Optimizing the use of patients' individual outcome information - Development and usability tests of a Chronic Kidney Disease dashboard.

BACKGROUND: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making (SDM). These outcomes can be presented over time in a clear way by the means of dashboarding. We aimed to systematically develop a Chronic Kidney Disease (CKD) dashboard designed to support consultations, test its usability and explore conditions for optimal use in practice. METHODS: For development a participatory approach with patients and healthcare professionals (HCPs) from three hospitals was used. Working groups and patient focus groups were conducted to identify needs and inform the dashboard's design. Usability was tested in patient interviews. A focus group with HCPs was held to identify conditions for optimal use of the dashboard in daily practice. RESULTS: A dashboard was developed for CKD patients stage 3b-4 visualizing both clinical and patient-reported outcomes over time for use during consultations and accessible for patients at home. Both HCPs and patients indicated that the dashboard can: motivate patients in their treatment by providing feedback on outcomes over time; improve consultation conversations by enhanced preparation of both HCPs and patients; better inform patients, thereby facilitating shared decision making. HCPs and patients both stated that setting a topic agenda for the consultation together is important in effectively discussing the dashboard during consultations. Moreover, the dashboard should not dominate the conversation. Lastly, findings of the usability tests provided design requirements for optimal user-friendliness and clarity. CONCLUSIONS: Dashboarding can be a valuable way of reporting individual outcome information to patients and their clinicians as findings suggest it may stimulate patient activation and facilitate decision making. Co-creation with patients and HCPs was essential for successful development of the dashboard. Gained knowledge from the co-creation process can inform others wishing to develop similar digital tools for use in clinical practice.

Health Consumer Engagement, Enablement, and Empowerment in Smartphone-Enabled Home-Based Diagnostic Testing for Viral Infections: Mixed Methods Study.

BACKGROUND: Health consumers are increasingly taking a more substantial role in decision-making and self-care regarding their health. A range of digital technologies is available for laypeople to find, share, and generate health-related information that supports their health care processes. There is also innovation and interest in home testing enabled by smartphone technology (smartphone-supported home testing [smart HT]). However, few studies have focused on the process from initial engagement to acting on the test results, which involves multiple decisions. OBJECTIVE: This study aimed to identify and model the key factors leading to health consumers' engagement and enablement associated with smart HT. We also explored multiple levels of health care choices resulting from health consumer empowerment and activation from smart HT use. Understanding the factors and choices associated with engagement, enablement, empowerment, and activation helps both research and practice to support the intended and optimal use of smart HT. METHODS: This study reports the findings from 2 phases of a more extensive pilot study of smart HT for viral infection. In these 2 phases, we used mixed methods (semistructured interviews and surveys) to shed light on the situated complexities of health consumers making autonomous decisions to engage with, perform, and act on smart HT, supporting the diagnostic aspects of their health care. Interview (n=31) and survey (n=282) participants underwent smart HT testing for influenza in earlier pilot phases. The survey also extended the viral infection context to include questions related to potential smart HT use for SARS-CoV-2 diagnosis. RESULTS: Our resulting model revealed the smart HT engagement and enablement factors, as well as choices resulting from empowerment and activation. The model included factors leading to engagement, specifically various intrinsic and extrinsic influences. Moreover, the model included various enablement factors, including the quality of smart HT and the personal capacity to perform smart HT. The model also explores various choices resulting from empowerment and activation from the perspectives of various stakeholders (public vs private) and concerning different levels of impact (personal vs distant). CONCLUSIONS: The findings provide insight into the nuanced and complex ways health consumers make decisions to engage with and perform smart HT and how they may react to positive results in terms of public-private and personal-distant dimensions. Moreover, the study illuminates the role that providers and smart HT sources can play to better support digitally engaged health consumers in the smart HT decision process.

Worsening pain and quality of life for spine surgery patients during the COVID-19 pandemic: Roles of psychological distress and patient activation.

BACKGROUND: Public health measures during the COVID-19 pandemic have disrupted access to basic resources (income, food, housing, healthcare). The effects may impact patients differently based on socioeconomic status (SES), pre-existing psychological distress, and patient activation (knowledge, skills, and motivation to manage healthcare). We examined changes in access to basic resources and in pain and health-related quality of life (HRQoL) during the pandemic and determined how pre-existing psychological distress and patient activation are associated with exacerbation or mitigation of effects on pain and HRQoL. METHODS: This cross-sectional study assessed 431 patients in a longitudinal-outcomes registry who underwent or scheduled spine surgery at our institution and were surveyed about COVID-19 effects on accessing basic resources. We assessed pain (numeric rating scale) and HRQoL (PROMIS 29-Item Profile). Information on preoperative SES, psychological distress, patient activation, pain, and HRQoL was collected previously. We compared access to basic resources by SES. We compared changes from pre-COVID-19 to COVID-19 assessments of pain and HRQoL and proportions of patients reporting worsened pain and HRQoL stratified by psychological distress. We analyzed associations between patient activation and negative effects on HRQoL using multivariable linear regression. Alpha=0.05. RESULTS: Respondents reported minor disruptions in accessing basic resources (no difference by SES) but significant worsening of back (p=.027) and leg pain (p=.013) and HRQoL (physical function, fatigue, p<0.001; satisfaction with participation in social roles, p=0.048) during COVID-19. Psychological distress was associated with clinically relevant worsening of back, pain, leg pain, and physical function all, (p<0.05). High patient activation was associated with less impairment of physical function (p=0.03). CONCLUSION: Patients with pre-existing psychological distress experienced greater worsening of pain and HRQoL. High patient activation appeared to mitigate worsening of physical function. Providers should screen for psychological distress and patient activation and enhance supports to manage pain and maintain HRQoL in at-risk patients.Level of Evidence: III.

Changes in patient activation following cardiac rehabilitation using the Active+me digital healthcare platform during the COVID-19 pandemic: a cohort evaluation.

BACKGROUND: Restrictions on face-to-face contact, due to COVID-19, led to a rapid adoption of technology to remotely deliver cardiac rehabilitation (CR). Some technologies, including Active+me, were used without knowing their benefits. We assessed changes in patient activation measure (PAM) in patients participating in routine CR, using Active+me. We also investigated changes in PAM among low, moderate, and high risk patients, changes in cardiovascular risk factors, and explored patient and healthcare professional experiences of using Active+me. METHODS: Patients received standard CR education and an exercise prescription. Active+me was used to monitor patient health, progress towards goals, and provide additional lifestyle support. Patients accessed Active+me through a smart-device application which synchronised to telemetry enabled scales, blood pressure monitors, pulse oximeter, and activity trackers. Changes in PAM score following CR were calculated. Sub-group analysis was conducted on patients at high, moderate, and low risk of exercise induced cardiovascular events. Qualitative interviews explored the acceptability of Active+me. RESULTS: Forty-six patients were recruited (Age: 60.4 ± 10.9 years; BMI: 27.9 ± 5.0 kg.m2; 78.3% male). PAM scores increased from 65.5 (range: 51.0 to 100.0) to 70.2 (range: 40.7 to 100.0; P = 0.039). PAM scores of high risk patients increased from 61.9 (range: 53.0 to 91.0) to 75.0 (range: 58.1 to 100.0; P = 0.044). The PAM scores of moderate and low risk patients did not change. Resting systolic blood pressure decreased from 125 mmHg (95% CI: 120 to 130 mmHg) to 119 mmHg (95% CI: 115 to 122 mmHg; P = 0.023) and waist circumference measurements decreased from 92.8 cm (95% CI: 82.6 to 102.9 cm) to 85.3 cm (95% CI 79.1 to 96.2 cm; P = 0.026). Self-reported physical activity levels increased from 1557.5 MET-minutes (range: 245.0 to 5355.0 MET-minutes) to 3363.2 MET-minutes (range: 105.0 to 12,360.0 MET-minutes; P < 0.001). Active+me was acceptable to patients and healthcare professionals. CONCLUSION: Participation in standard CR, with Active+me, is associated with increased patient skill, knowledge, and confidence to manage their condition. Active+me may be an appropriate platform to support CR delivery when patients cannot be seen face-to-face. TRIAL REGISTRATION: As this was not a clinical trial, the study was not registered in a trial registry.

A survey study of adults with chronic conditions: Examining the correlation between patient activation and health locus of control.

OBJECTIVES: This study aimed to examine (1) the association between patient activation (PA), health locus of control (HLOC), sociodemographic and clinical factors, and (2) the effect of HLOC dimensions, sociodemographic and clinical factors on PA. METHODS: Three hundred U.S. adults, with at least one chronic condition (CC) were recruited through Amazon Mechanical Turk and completed an online survey which included sociodemographic questions, the Patient Activation Measure® - 10, and the Multidimensional Locus of Control (MHLC) - Form B. Statistical analyses, including descriptive, correlation, and multiple linear regression, were conducted using IBM SPSS v25. RESULTS: Of the 300 participants, more than half were male (66.3%), White (70.7%), with at least a college degree (76.0%), and employed full-time (79.0%). The average PA score was 68.8 ± 14.5. Multiple linear regression indicated that participants who reported they were Black, retired, with a greater number of CCs, and with higher scores in Chance MHLC had higher PA, while participants with higher scores in Internal MHLC, were unemployed and reported to have been affected by COVID-19-related worry or fear to manage their CC, had lower PA. DISCUSSION: HLOC dimensions should be addressed concurrently with PA for patients with CCs, thus adding to a more patient-centered clinical approach.

The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial.

BACKGROUND: Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary). METHODS: This study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort ( http://www.spinsclero.com/en/cohort ) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited. DISCUSSION: The SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge. TRIAL REGISTRATION: ClinicalTrials.gov NCT04246528 . Registered on 27 January 2020.

The predictive value of patient, therapist, and in-session ratings of motivational factors early in remote cognitive behavioural therapy for severe health anxiety.

OBJECTIVES: Remote psychotherapy and the prevalence of Severe Health Anxiety (SHA) are both growing as a result of the COVID-19 pandemic. Remotely delivered Cognitive Behavioural Therapy (rCBT) for SHA is evidenced as effective, but many who seek help do not benefit. Motivational processes can influence outcomes, but it is unclear what assessment methods offer the best clinical utility in rCBT for SHA. DESIGN: This study compared the predictive validity of patient, therapist and in-session ratings of motivational factors taken at session two of rCBT for SHA among high healthcare users experiencing multimorbidity. METHODS: Motivational factors were assessed for 56 participants who attended at least two sessions of CBT for SHA delivered via video-conferencing or telephone. Following session two, therapists and patients completed online assessments of patient motivation. Two trained observers also rated motivational factors and therapeutic alliance from in-session interactions using session two recordings and transcripts. Multilevel modelling was used to predict health anxiety and a range of secondary health outcomes from motivation assessments. RESULTS: Where patients were more actively engaged in discussion of positive changes during session two, greater outcome improvements ensued in health anxiety and all secondary outcomes. Conversely, larger proportions of session two spent describing problems predicted poorer outcomes. Therapist and patient assessments of motivation did not predict health anxiety, but therapist assessments of client confidence and motivation predicted all secondary outcomes. CONCLUSIONS: Motivation remains an important process in CBT when delivered remotely, and motivational factors may predict outcomes more consistently from in-session interactions, compared to self-reports.

COVID-19 social distancing: negative effects on people with Parkinson disease and their associations with confidence for self-management.

BACKGROUND: The purpose of this study was to describe the effects of COVID-19 social distancing on the function, health, and well-being of people with Parkinson disease (PD), and test the association of these effects with patients' activation levels, i.e., their skills and confidence in managing their health. METHODS: Community-dwelling individuals with PD answered an anonymous web-based survey. Part 1 included 27 multiple-choice questions regarding changes in function, health, medical care, and well-being. Part 2 consisted of the Patient Activation Measure, which enquired about skills and confidence in managing one's health. RESULTS: Respondents (N = 142) reported decreases in various function (24.8%-37.3%), health (33.8%-43%), and well-being (26.1%-47.1%) domains. Rehabilitation ceased for 61.2%. Among those reporting a worsening of health, 67.8% associated this with the cessation of rehabilitative treatments or decrease in physical activity. Patients' activation levels were inversely correlated with increased assistance for activities of daily living, increased tiredness, worsening symptoms, and lack of support from family and friends. CONCLUSIONS: Social distancing had a major negative impact on the health and function of people with PD. PRACTICAL IMPLICATIONS: Supporting people with PD skills and confidence in managing health may preserve their physical and mental health during this period of dramatic changes in life's circumstances.

The Impact of the COVID-19 Pandemic on Self-Reported Management of Chronic Conditions.

Chronic conditions (CCs) management during the COVID-19 pandemic and the impact of the pandemic on patient activation (PA) and health locus of control (HLOC) remain unknown. This cross-sectional online survey study examined the role of COVID-19 pandemic-related worry or fear in PA and HLOC among patients with CCs. Individuals with CCs (n = 300) were recruited through MTurk Amazon. The questionnaire included sociodemographic questions, the Patient Activation Measure, and the Multidimensional Health Locus of Control-Form B. Out of the 300 participants, 9.7% were diagnosed with COVID-19, and 7.3% were hospitalized. Patients with cancer, chronic kidney disease, chronic obstructive pulmonary disease, drug abuse/substance abuse, and stroke reported significant difficulties in managing their CCs due to worry or fear because of COVID-19. More than half of the sample (45.7%) reported COVID-19-related worry or fear about managing their CCs, and these patients had lower PA and lower external HLOC compared to patients not affected by COVID-19-related worry or fear. Health professionals should provide more support for patients facing difficulties in managing their CCs during the COVID-19 pandemic.

Predicting outcomes and sudden gains from initial in-session interactions during remote cognitive-behavioural therapy for severe health anxiety.

There has been a dramatic increase in remote psychotherapy since the onset of the COVID-19 crisis. There is also expected to be an increase in mental health problems in the wake of the COVID-19 pandemic. An increase in severe health anxiety (SHA) is particularly anticipated, for which cognitive-behavioural therapy (CBT) is a frontline treatment. However, it is unclear what interaction types are associated with outcome-improvement in remote-CBT (rCBT) for SHA. This study aimed to identify interaction types that predict outcomes and sudden gains in rCBT for SHA using initial therapy session content. Forty-eight participants in rCBT for SHA had interactions at their first sessions categorized and rated in terms of patient activation: an individual's confidence and ability to manage their health. Multilevel modelling assessed whether early interaction types predicted session-by-session wellbeing. For participants experiencing sudden gains (n = 12) interactions at the session directly prior to the gain were similarly categorized and rated. The scores were then compared with ratings for the preceding session. A smaller proportion of early sessions was taken up with problem descriptions among those with greater outcome improvements. There was also a significant reduction in the proportion of the session spent describing problems in the session directly prior to a sudden gain, as compared with the previous session. Conversely, clients with better outcomes made more positive evaluations of themselves and therapy, noticed more positive changes and made more contributions to structuring interactions at initial sessions. Specific early interaction types predict session-by-session outcomes and precede sudden gains in rCBT for SHA.