scholarly journals Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study (Preprint)

2019 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Patients With Cancer ◽  
Smart Watch ◽  
Smart Health

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 DERR1-10.2196/16178

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

10.2196/16178 ◽  
2019 ◽  
Vol 8 (12) ◽  
pp. e16178 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Patients With Cancer ◽  
Smart Watch ◽  
Smart Health

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

ALS caregiver quality of life and psychological implications

2018 ◽  
Author(s):  
Peggy Z. Shipley
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Physical And Mental Health ◽  
Emotional Challenges ◽  
Disease Trajectory ◽  
Caregiver Quality ◽  
High Distress

Amyotrophic lateral sclerosis (ALS) impacts greatly not only those who have the disease, but also family caregivers who provide the majority of care for their loved ones throughout the ALS disease trajectory. In the provision of this care, these family caregivers frequently experience significant threats to their own physical and mental health, and thus to their quality of life. The burden of caregiving can be high, distress is not uncommon, and support is needed to best address these issues. Despite the physical and emotional challenges faced by family caregivers, limited research has been directed at this caregiving phenomenon. The more health care providers understand the key elements of the ALS caregiving experience, the better equipped they will be to recognize the caregivers as not only co-providers of care, but as potential recipients of care to meet the unique physical and mental challenges of this caregiving population.

scholarly journals Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program

2020 ◽  
Vol 8 ◽  
Author(s):  
Paola Lago ◽  
Maria Elena Cavicchiolo ◽  
Francesca Rusalen ◽  
Franca Benini
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Health Care Providers ◽  
Cultural Beliefs ◽  
Newborn Care ◽  
Care Program ◽  
Spiritual Support ◽  
Care Providers ◽  
Perinatal Palliative Care

Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles.Recent findings: PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development.Summary: Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.

scholarly journals Application of Palliative Care in Improving the Quality of Life of Patients with Cancer Pain

2017 ◽  
Vol 07 (04) ◽  
pp. 473-480
Author(s):  
Zuyan Fan ◽  
Jinxiang Lin ◽  
Xiangwei Chen ◽  
Xiuyan Huang
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Patients With Cancer

scholarly journals Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

2019 ◽  
Vol 34 (1) ◽  
pp. 145-154 ◽  
Author(s):  
Lauren J Breen ◽  
Samar M Aoun ◽  
Moira O’Connor ◽  
Andrew R Johnson ◽  
Denise Howting
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
General Health ◽  
Comparison Group ◽  
Care Providers ◽  
Prospective Longitudinal Study ◽  
Prolonged Grief ◽  
Prospective Longitudinal

Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers. Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months). Setting/participants: Participants ( N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death. Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

Quality of life in palliative care: principles and practice

2015 ◽  
Author(s):  
Stein Kaasa ◽  
Jon Håvard Loge
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Research Question ◽  
Patient Reported Outcome ◽  
Care Providers ◽  
Sequential Approach ◽  
Patient Reported

To improve or sustain patients’ health-related quality of life (HRQOL) is the main goal of palliative care. In health care, HRQOL encompasses a range of components that are measurable and related to health, disease, illness, and medical interventions. Another term, patient-reported outcome (PRO), is used and understood as any measure that collects responses directly from the patients and measures any aspect of patients’ health status that is reported by the patients without any interpretation by health-care providers or family members. The selection of PRO-instruments (questionnaires) is recommended to follow a sequential approach. Define overall aim(s), define the research question(s), agree upon the key outcome(s), and select the appropriate set of questions/questionnaires guided by the primary and secondary outcomes. In general, it is recommended to use a HRQOL measure of generic or disease-specific character and supplement it with domain-specific measure(s) (such as measurement of fatigue, pain, anxiety, depression, etc.) reflecting the purpose(s) of the data collection.

On the road again: Patient perspectives on commuting for palliative care

2010 ◽  
Vol 8 (2) ◽  
pp. 187-195 ◽  
Author(s):  
Barbara Pesut ◽  
Carole A. Robinson ◽  
Joan L. Bottorff ◽  
Gillian Fyles ◽  
Sandra Broughton
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Well Being ◽  
Cancer Center ◽  
Care Providers ◽  
Structured Interviews ◽  
On The Road

AbstractObjective:The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.Method:The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.Results:Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.Significance of Results:Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

scholarly journals Psychological risk factors that characterize the trajectories of quality of life after a physical trauma: a longitudinal study using latent class analysis

2021 ◽  
Author(s):  
Eva Visser ◽  
Brenda Leontine Den Oudsten ◽  
Taco Gosens ◽  
Paul Lodder ◽  
Jolanda De Vries
Keyword(s):  
Quality Of Life ◽  
Latent Class Analysis ◽  
Health Care Providers ◽  
Psychological Health ◽  
Latent Class ◽  
Stress Disorder ◽  
Class Analysis ◽  
Care Providers ◽  
Physical Trauma

Abstract Background The course and corresponding characteristics of quality of life (QOL) domains in trauma population are unclear. Our aim was to identify longitudinal QOL trajectories and determine and predict the sociodemographic, clinical, and psychological characteristics of trajectory membership in physical trauma patients using a biopsychosocial approach. Methods Patients completed a questionnaire set after inclusion, and at 3, 6, 9, and 12 months follow-up. Trajectories were identified using repeated-measures latent class analysis. The trajectory characteristics were ranked using Cohen’s d effect size or phi coefficient. Results Altogether, 267 patients were included. The mean age was 54.1 (SD = 16.1), 62% were male, and the median injury severity score was 5.0 [2.0—9.0]. Four latent trajectories were found for psychological health and environment, five for physical health and social relationships, and seven trajectories were found for overall QOL and general health. The trajectories seemed to remain stable over time. For each QOL domain, the identified trajectories differed significantly in terms of anxiety, depressive symptoms, acute stress disorder, post-traumatic stress disorder, Neuroticism, trait anxiety, Extraversion, and Conscientiousness. Discussion Psychological factors characterized the trajectories during 12 months after trauma. Health care providers can use these findings to identify patients at risk for impaired QOL and offer patient-centered care to improve QOL.

Sign in / Sign up

Export Citation Format

Share Document