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Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study.

ABSTRACT: BACKGROUND:An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology ("Smart Health") has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain. OBJECTIVE:This study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers). METHODS:This descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content. RESULTS:Recruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021. CONCLUSIONS:BESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/16178.

SUBMITTER: LeBaron V

PROVIDER: S-EPMC6928698 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study.

LeBaron Virginia V Hayes James J Gordon Kate K Alam Ridwan R Homdee Nutta N Martinez Yudel Y Ogunjirin Emmanuel E Thomas Tanya T Jones Randy R Blackhall Leslie L Lach John J

JMIR research protocols 20191209 12

<h4>Background</h4>An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology ("Smart Health") has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain.<h4>Objective</h4>This stud ...[more]

PMID: 31815679

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Project description:BackgroundDistressing cancer pain remains a serious symptom management issue for patients and family caregivers, particularly within home settings. Technology can support home-based cancer symptom management but must consider the experience of patients and family caregivers, as well as the broader environmental context.ObjectiveThis study aimed to test the feasibility and acceptability of a smart health sensing system-Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C)-that was designed to support the monitoring and management of cancer pain in the home setting.MethodsDyads of patients with cancer and their primary family caregivers were recruited from an outpatient palliative care clinic at an academic medical center. BESI-C was deployed in each dyad home for approximately 2 weeks. Data were collected via environmental sensors to assess the home context (eg, light and temperature); Bluetooth beacons to help localize dyad positions; and smart watches worn by both patients and caregivers, equipped with heart rate monitors, accelerometers, and a custom app to deliver ecological momentary assessments (EMAs). EMAs enabled dyads to record and characterize pain events from both their own and their partners' perspectives. Sensor data streams were integrated to describe and explore the context of cancer pain events. Feasibility was assessed both technically and procedurally. Acceptability was assessed using postdeployment surveys and structured interviews with participants.ResultsOverall, 5 deployments (n=10 participants; 5 patient and family caregiver dyads) were completed, and 283 unique pain events were recorded. Using our "BESI-C Performance Scoring Instrument," the overall technical feasibility score for deployments was 86.4 out of 100. Procedural feasibility challenges included the rurality of dyads, smart watch battery life and EMA reliability, and the length of time required for deployment installation. Postdeployment acceptability Likert surveys (1=strongly disagree; 5=strongly agree) found that dyads disagreed that BESI-C was a burden (1.7 out of 5) or compromised their privacy (1.9 out of 5) and agreed that the system collected helpful information to better manage cancer pain (4.6 out of 5). Participants also expressed an interest in seeing their own individual data (4.4 out of 5) and strongly agreed that it is important that data collected by BESI-C are shared with their respective partners (4.8 out of 5) and health care providers (4.8 out of 5). Qualitative feedback from participants suggested that BESI-C positively improved patient-caregiver communication regarding pain management. Importantly, we demonstrated proof of concept that seriously ill patients with cancer and their caregivers will mark pain events in real time using a smart watch.ConclusionsIt is feasible to deploy BESI-C, and dyads find the system acceptable. By leveraging human-centered design and the integration of heterogenous environmental, physiological, and behavioral data, the BESI-C system offers an innovative approach to monitor cancer pain, mitigate the escalation of pain and distress, and improve symptom management self-efficacy.International registered report identifier (irrid)RR2-10.2196/16178.

Project description:BackgroundLow back pain (LBP) and knee osteoarthritis (OA) are major contributors to disability worldwide. These conditions result in a significant burden at both individual and societal levels. Engagement in regular physical activity and exercise programs are known to improve physical function in both chronic LBP and knee OA populations. For people residing in rural areas, musculoskeletal conditions are often more frequent and disabling compared to urban populations, which could be the result of reduced access to appropriate health services and resources in rural settings. EHealth is an innovative solution to help provide equitable access to treatment for people with musculoskeletal pain living in rural settings.Methods/designWe will conduct a randomised clinical trial investigating the effects of an eHealth intervention compared to usual care, for people with chronic non-specific LBP or knee OA in rural Australia. We will recruit 156 participants with non-specific chronic LBP or knee OA. Following the completion of baseline questionnaires, participants will be randomly allocated to either the eHealth intervention group, involving a tailored physical activity and progressive resistance exercise program remotely delivered by a physiotherapist (n = 78), or usual care (n = 78) involving referral to a range of care practices in the community. Outcomes will be measured at baseline, 3 and 6 months post-randomisation. The primary outcome will be physical function assessed by the Patient-Specific Functional Scale (PSFS). Secondary outcomes include pain intensity, physical activity levels, activity limitations, quality of life, pain coping. We will also collect process evaluation data such as recruitment rate, attendance and adherence, follow-up rate, participants' opinions and any barriers encountered throughout the trial.DiscussionThe findings from this trial will establish the effectiveness of eHealth-delivered interventions that are known to be beneficial for people with LBP and knee OA when delivered in person. As a result, this trial will help to inform health care policy and clinical practice in Australia and beyond for those living in non-urban areas.Trial registrationThis study was prospectively registered on the Australian New Zealand Clinical Trials Registry ( ACTRN12618001494224 ) registered 09.05.2018.

Project description:BackgroundOne of the greatest barriers found by physical therapy treating individuals with Parkinson's disease (PD) is the adherence to treatment, associated with the lack of motivation to remain active. Therefore, there is a need to change the look given to physical therapy and for the individual, seeking the centralization of the therapy in their preferences. This study aims to present the EMPOWER-PD, a protocol based on individual preferences and its design for feasibility.MethodA 12-week pilot for a randomized clinical trial will assess the feasibility and preliminary effectiveness of the EMPOWER-PD and make comparisons with conventional physical therapy (CPh). Both protocols consist of mobility and locomotion training, and aim at improving motor and non-motor symptoms through different approaches. The EMPOWER-PD aims to provide a source of motivation and empowerment of health through the self-knowledge of the individual's abilities and limitations, in a protocol that addresses individual preferences. The CPh is based only on physiotherapist decisions, not addressing the individual's preferences or motivation/empowerment. The target recruitment will be 24 PD individuals, between stages I and III of Hoehn and Yahr (HY), who will be recruited from Brazilian Parkinson's disease Rehabilitation Initiative (BPaRkI) with allocation ratio 1:1. A computerized block randomization procedure will be implemented by a blinded researcher with the participants blinded to group assignment. The sessions will be conducted in a group setting, twice a week, during 60 min for 8 weeks, followed by 4 weeks of follow-up. The primary outcomes will be the feasibility data (adherence, recruitment rate, and safety). The secondary outcomes will assess the preliminary efficacy on qualitative assessment about individual's motivation/empowerment and quantitative motor outcomes (Timed Up and Go and Dynamic Gait Index) and non-motor symptoms (6-min walk test and Fatigue Severity Scale). The recommendation to have 6-12 participants per group will be adopted based on the qualitative analysis to the sample size.DiscussionThis study will provide important insights about the physical therapy approach in PD individuals. The EMPOWER-PD is innovative because (1) it proposes an intervention that includes an individual-centered approach with motor control principles; (2) it aims to provide a source of motivation and empowerment of health; (3) assesses the individual in a global view considering motor and non-motor symptoms, using both, qualitative and quantitative metrics.Trial registrationRBR-7ZBXQ5.

Project description:AimTo evaluate the feasibility of the Carer Matters holistic hospital-to-home framework for family caregivers of people with dementia.BackgroundFamily caregivers of persons with dementia face a unique blend of stressors, from behavioural management to navigating the healthcare system. It is important to provide support and assistance to help caregivers cope to enable a sustained capacity for caregiving. This led to our establishment of Carer Matters, the first holistic caregiver-centric hospital-to-home framework of support for caregivers of persons with dementia in Singapore.MethodsA multimethod study design will be used. We will assess the programme's feasibility and effectiveness using a Theory of Change approach, with findings synthesized using the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework. Our study will involve six inpatient wards of a 1700-bedded acute care hospital over 12 months. Qualitative data will be obtained from interviews of stakeholders-caregivers, healthcare professionals, hospital leaders and community leaders. Quantitative data will be collected from programme logs, surveys and evaluation forms that capture self-reported levels of mastery, anxiety, burden, and depression. Funding has been approved by the Geriatric Education and Research Institute (GERI) Intramural Project Grant (GERI Ref: GERI1626) on May 2020 for this study (£103,659), to be conducted from December 2020 to June 2022.DiscussionThe stresses faced by caregivers of persons with dementia are wide and complex, necessitating a multi-faceted caregiver-oriented solution to provide sustained support, empower better management and continued capacity to care. Our study would provide insights on the feasibility and effectiveness of a caregiver-centric support programme stretching from the hospital into the community.ImpactThese findings will provide a blueprint on how to implement a hospital-to-home patient-caregiver framework and provide policymakers, clinicians, and advocacy groups with critical insights on the potential patient-caregiver-healthcare system outcomes that can be derived.

Project description:Background and Objectives:The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes. Research Design and Methods:The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months. Results:FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers. Discussion and Implications:This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.

Project description:BackgroundEndometriosis (where endometrial-like tissue is found outside the uterus) affects ~ 176 million women worldwide and can lead to debilitating pelvic pain. Three subtypes of endometriosis exist, with ~ 80% of women having superficial peritoneal endometriosis (SPE). Endometriosis is diagnosed by laparoscopy and, if SPE is found, gynaecologists usually remove it surgically. However, many women get limited pain relief from surgical removal of SPE. We plan to undertake a future large trial where women who have only SPE found at initial laparoscopy are randomly allocated to have surgical removal (excision or ablation) of SPE, or not. Ultimately, we want to determine whether surgical removal improves overall symptoms and quality of life, or whether surgery is of no benefit, exacerbates symptoms, or even causes harm. The primary objective of this feasibility study is to determine what proportion of women with suspected SPE undergoing diagnostic laparoscopy will agree to randomisation. The secondary objectives are to determine if there are differences in key prognostic parameters between eligible women that agree to be randomised and those that decline; how many women having laparoscopy for investigation of chronic pelvic pain are eligible for the trial; the range of treatment effects and variability in outcomes and the most acceptable methods of recruitment, randomisation and assessment tools.MethodsWe will recruit up to 90 women with suspected SPE undergoing diagnostic laparoscopy over a 9-month recruitment period in four Scottish hospitals and randomise them 1:1 to either diagnostic laparoscopy alone (with a sham port to achieve blinding of the allocation) or surgical removal of endometriosis. Baseline characteristics, e.g. age, index of social deprivation, ethnicity, and intensity/duration of pain will be collected. Participants will be followed up by online questionnaires assessing pain, physical and emotional function at baseline, 3 months, 6 months and 12 months.DiscussionRecruitment to a randomised controlled trial to assess the effectiveness of surgery for endometriosis may be challenging because of preconceived ideas about treatment success amongst patients and clinicians. We have designed this study to assess feasibility of recruitment and to inform the design of our future definitive trial.Trial registrationClincicalTrials.gov, NCT04081532 STATUS: Recruiting.

Project description:BackgroundInadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input.ObjectiveThis study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system.MethodsThis was a descriptive pilot study using a multimethod approach. Dyads of patients with cancer and difficult pain and their primary family caregivers were recruited from an outpatient oncology clinic. The participant interviews consisted of (1) open-ended questions to explore the overall experience of cancer pain at home, (2) ranking of variables on a Likert-type scale (0, no impact; 5, most impact) that may influence cancer pain at home, and (3) feedback regarding BESI-C system prototypes. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed using SPSS; basic descriptive statistics and independent sample t tests were run.ResultsOur sample (n=22; 10 patient-caregiver dyads and 2 patients) uniformly described the experience of managing cancer pain at home as stressful and difficult. Key themes included (1) unpredictability of pain episodes; (2) impact of pain on daily life, especially the negative impact on sleep, activity, and social interactions; and (3) concerns regarding medications. Overall, taking pain medication was rated as the category with the highest impact on a patient's pain (=4.79), followed by the categories of wellness (=3.60; sleep quality and quantity, physical activity, mood and oral intake) and interaction (=2.69; busyness of home, social or interpersonal interactions, physical closeness or proximity to others, and emotional closeness and connection to others). The category related to environmental factors (temperature, humidity, noise, and light) was rated with the lowest overall impact (=2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and reported a preference for using a wearable sensor (smart watch) to capture data related to the abrupt onset of difficult cancer pain.ConclusionsSmart health systems to support cancer pain management should (1) account for the experience of both the patient and the caregiver, (2) prioritize passive monitoring of physiological and environmental variables to reduce burden, and (3) include functionality that can monitor and track medication intake and efficacy; wellness variables, such as sleep quality and quantity, physical activity, mood, and oral intake; and levels of social interaction and engagement. Systems must consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms.

Project description:BackgroundTele-mentorship is considered to offer a solution to training and providing professional assistance at a distance. Tele-mentoring is a method in which a mentor interactively guides a mentee at a different geographic location in real time using a technological communication device. During a healthcare procedure, tele-mentoring can support a medical expert, remote from the treatment site, to guide a less-experienced practitioner at a different geographic location. Augmented Reality (AR) technology has been incorporated in tele-mentoring systems in healthcare environments globally. However, evidence is absent about the usability of AR technology in tele-mentoring clinical healthcare professionals in managing clinical scenarios.AimThis study aims to evaluate the usability of Augmented Reality (AR) technology in tele-mentorship for managing clinical scenarios.MethodsThis study uses a quasi-experimental design. Four experienced health professionals and a minimum of twelve novice health practitioners will be recruited for the roles of mentors and mentees, respectively. In the experiment, each mentee wearing the AR headset performs a maximum of four different clinical scenarios in a simulated learning environment. A mentor who stays in a separate room and uses a laptop will provide the mentee remote instruction and guidance following the standard protocols for the treatment proposed for each scenario. The scenarios of Acute Coronary Syndrome, Acute Myocardial Infarction, Pneumonia Severe Reaction to Antibiotics, and Hypoglycaemic Emergency are selected, and the corresponding clinical management protocols developed. Outcome measures include the mentors and mentees' perception of the AR's usability, mentorship effectiveness, and the mentees' self-confidence and skill performance.EthicsThe protocol was approved by the Tasmania Health and Medical Human Research Ethics Committee (Project ID: 23343). The complete pre-registration of our study can be found at https://osf.io/q8c3u/.

Dataset Information

Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study.

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Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study.

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