mPalliative Care Link: Examination of a mobile solution to palliative care coordination among Tanzanian cancer patients.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 1584-1584
Author(s):  
Mamsau Ngoma ◽  
Susan Miesfeldt ◽  
Beatrice Mushi ◽  
Robert Morse ◽  
Twalib Athumani Ngoma ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Care Coordination ◽  
Symptom Severity ◽  
Small Sample ◽  
Sub Saharan Africa ◽  
Health Concern ◽  
Care Satisfaction ◽  
Phone Contact ◽  
Over Time

1584 Background: Cancer is a growing public health concern in Tanzania (and throughout sub-Saharan Africa), with a majority of cases presenting in late stage with associated distress, ie, pain. Access to specialty palliative care (PC) is a national priority in Tanzania; however, there are limited numbers of PC specialists (hereafter, specialists). Mobile health promises to extend the reach of a limited pool of specialists through inter-professional, community-based care coordination. This work assessed the effectiveness of a smartphone-/web-based application, mobile Palliative Care Link (mPCL), to extend specialist access via shared data and communication with local health workers (LHWs). Central to mPCL is the African Palliative care Outcome Scale (POS), adapted for automated, scheduled mobile symptom assessment and response. Methods: Following consent, incurable adult cancer patients were randomized at hospital discharge from a large urban, government-supported Tanzanian cancer institute to one of two study arms—mPCL or phone-contact POS collection. Baseline sociodemographic, clinical and POS data were recorded. Twice-weekly POS responses were collected and managed via mPCL or by phone-contact with clinician study personnel for up to 4-months depending on respective study arm. Patient end-of-study care satisfaction was assessed via phone-survey. Results: Forty-nine patients per arm participated. Comparison of baseline characteristics showed a trend toward more women ( p= 0.07) and higher discharge morphine use ( p= 0.09) in the mPCL versus phone-contact groups, respectively, and significant between-group differences in cancer types ( p= 0.003). Proportion of deaths were near-equal comparing groups [26% ( n= 13) mPCL versus 28% ( n= 14) phone-contact]. Overall symptom severity was lower in the phone-contact group ( p <0.0001) and symptom severity decreased over time in both groups ( p= 0.0001); however, between-group change in overall symptoms over time did not vary ( p= 0.34). Care satisfaction was high overall in both groups with few between-groups differences, ie, greater provider response to questions and concerns in the phone-contact arm and greater provision of spiritual support in the mPCL arm. Conclusions: Higher symptom severity scores in the mPCL arm likely reflecting between-group sociodemographic/clinical differences and clinical support of phone-contact arm participants. Similar rates of care satisfaction in both groups suggest that, compared to phone-based support, mPCL may facilitate effective symptom-focused care in a more efficient and scalable manner. Study limitations include a small sample of patients from a single urban hospital and lack of a true usual care arm. Broader study of mPCL’s cost-efficiency and utility in Tanzania is needed. This work promises to close a large PC gap in under-resourced settings throughout Tanzania and other LMICs.

scholarly journals mPalliative Care Link: Examination of a Mobile Solution to Palliative Care Coordination Among Tanzanian Patients With Cancer

2021 ◽  
pp. 1306-1315
Author(s):  
Mamsau Ngoma ◽  
Beatrice Mushi ◽  
Robert S. Morse ◽  
Twalib Ngoma ◽  
Habiba Mahuna ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Coordination ◽  
Symptom Severity ◽  
Health Workers ◽  
Symptom Control ◽  
Local Health ◽  
Severity Scores ◽  
Care Satisfaction ◽  
Phone Contact ◽  
Over Time

PURPOSE Late-stage cancer patient symptom control is a national priority in Tanzania. Mobile health promises to improve the reach of a limited pool of palliative care specialists through interprofessional, community-based care coordination. This work assessed the effectiveness of a smartphone- or Web-based app, mPalliative Care Link (mPCL), to extend specialist access via shared data and communication with local health workers. Central to mPCL is the African Palliative care Outcome Scale (POS), adapted for automated mobile symptom assessment and response. METHODS Adult patients with incurable cancer were randomly assigned at hospital discharge to mPCL versus phone-contact POS collection. Sociodemographic, clinical, and POS data were obtained at baseline. Twice-weekly POS responses were collected and managed via mPCL or phone contact with clinician study personnel for up to 4 months, on the basis of study arm assignment. Patient end-of-study care satisfaction was assessed via phone survey. RESULTS Forty-nine patients per arm participated. Comparison of baseline characteristics showed an insignificant trend toward more women ( P = .07) and higher discharge morphine use ( P = .09) in the mPCL group compared with phone-contact and significant between-group differences in cancer types ( P = .003). Proportions of deaths were near equal between groups (mPCL: 27%; phone-contact: 29%). Overall symptom severity was significantly lower in the phone-contact group ( P < .0001), and symptom severity decreased over time in both groups ( P = .0001); however, between-group change in overall symptoms over time did not vary significantly ( P = .34). Care satisfaction was generally high in both groups. CONCLUSION Higher symptom severity scores in the mPCL arm likely reflect between-group sociodemographic and clinical differences and clinical support of phone-contact arm participants. Similar rates of care satisfaction in both groups suggest that mPCL may support symptom-focused care coordination in a more efficient and scalable manner than phone contact. A broader study of mPCL's cost efficiency and utility in Tanzania is needed.

The PROVIEW+ tool: Developing and validating a tool to predict risk of poor performance status and severe symptoms in cancer patients over time.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 12095-12095
Author(s):  
Hsien Seow ◽  
Rinku Sutradhar ◽  
Lisa Catherine Barbera ◽  
Peter Tanuseputro ◽  
Dawn Guthrie ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Severe Pain ◽  
Performance Status ◽  
Well Being ◽  
Assessment System ◽  
Low Performance ◽  
Performance Scale ◽  
Over Time

12095 Background: There are numerous predictive cancer tools that focus on survival. However, no tools predict risk of low performance status or severe symptoms, which are important for patient decision-making and early integration of palliative care. The aim of this study was to develop and validate a model for all cancer types that predicts the risk for having low performance status and severe symptoms. Methods: A retrospective, population-based, predictive study using linked administrative data from cancer patients from 2008-2015 in Ontario, Canada. Patients were randomly selected for model derivation (60%) and validation (40%). The derivation cohort was used to develop a multivariable logistic regression model to predict the risk of having the reported outcomes in the subsequent 6 months. Model performance was assessed using discrimination and calibration plots. The main outcome was low performance status using the Palliative Performance Scale. Secondary outcomes included severe pain, dyspnea, well-being, and depression using the Edmonton Symptom Assessment System. Outcomes were recalculated after each of 4 annual survivor marks. Results: We identified 255,494 cancer patients (57% female; median age of 64; common cancers were breast (24%) and lung (13%)). At diagnosis, the risk of having low performance status, severe pain, well-being, dyspnea, and depression in 6-months is 1%, 3%, 6%, 13% and 4%, respectively for the reference case (i.e. male, lung cancer, stage I, no symptoms). Generally these covariates increased the outcome risk by > 10% across all models: obstructive lung disease, dementia, diabetes; radiation treatment; hospital admission; high pain; depression; Palliative Performance Scale score of 60-10; issues with appetite; or homecare. Model discrimination was high across all models. Conclusions: The model accurately predicted changing cancer risk for low performance status and severe symptoms over time. Providing accurate predictions of future performance status and symptom severity can support decision-making and earlier initiation of palliative care, even alongside disease modifying therapies.

scholarly journals m-Palliative Care Link: Developing a Mobile Application to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients (Preprint)

2020 ◽  
Author(s):  
Robert S Morse ◽  
Kaley Lambden ◽  
Erin Quinn ◽  
Twalib Ngoma ◽  
Beatrice Mushi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Care Coordination ◽  
Mobile Application ◽  
Health Workers ◽  
Symptom Control ◽  
Symptom Assessment ◽  
Local Health ◽  
Community Based ◽  
Functional Prototype

BACKGROUND Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania in need of innovative community-based solutions. Mobile health technology holds promise; however, existing resources are limited and access to palliative care specialists (hereafter, specialists) is poor. A mobile platform that extends specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and symptom management can address this gap in care, particularly in low-resource settings. OBJECTIVE The aim of this study was to design and develop mobile-Palliative Care Link (mPCL), a mobile/web application to support symptom assessment and care coordination and control, with a focus on pain. METHODS A human-centered iterative design framework was used to develop the mPCL prototype for use by specialists (palliative care physicians and nurses), poor-prognosis cancer patients and their lay caregivers (patients/caregivers), and LHWs. Central to mPCL is the validated patient-focused African Palliative care Outcome Scale (POS), adapted for automated, twice-weekly collection of patient/caregiver responses, and timely review, reaction and tracking by specialists and LHWs. Prototype usability testing sessions were conducted in person in a controlled setting with 21 key informants representing target end users. Sessions consisted of direct observations and qualitative feedback on ease-of-use and recommendations for improvement. Results were used to build a usable, functional prototype for subsequent real-world testing. Early pilot testing was conducted by deploying the application among ten patients/caregivers, randomized to mPCL use versus phone-contact POS collection, and then gathering feedback from the specialists, LHWs and nurses who used mPCL to manage care. This feedback was employed to further optimize the application for a broader randomized field study to examine the application’s effectiveness in symptom control among cancer patients. RESULTS mPCL functionalities include the ability to create and update a synoptic clinical record; regular real-time symptom assessment; patient/caregiver and care team communication and care coordination; symptom-focused educational resources; and easy access to emergency contact information. Results from usability and pilot testing demonstrated that all users were able to successfully navigate the application and feedback suggests that mPCL has clinical utility. User-informed recommendations included: further improvement in navigation of the application, simplification of patient/caregiver components and language, and delineation of user roles. CONCLUSIONS We designed, built, and tested a usable, functional prototype of a mobile application supporting palliative care for cancer patients in Tanzania. mPCL is expressly designed to support coordinated care via customized interfaces supporting core users—patients/caregivers, LHWs and members of the palliative care team—and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas.

Embedding palliative care into care coordination.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 62-62
Author(s):  
Finly Zachariah ◽  
Mariela Gallo ◽  
Matthew Loscalzo ◽  
Laura E. Crocitto
Keyword(s):  
Palliative Care ◽  
Bladder Cancer ◽  
Cancer Patients ◽  
Care Coordination ◽  
Multidisciplinary Team ◽  
Average Length ◽  
Family Satisfaction ◽  
Cost Index ◽  
Average Case ◽  
Advanced Directives

62 Background: The Institute of Medicine (IOM) identified care coordination as a key strategy with potential to improve the safety and effectiveness of implemented care by deliberately organizing patient care activities and sharing information among all participants concerned. Palliative care maximizes quality of life for patient and family in serious illness and can be provided early and concurrently with curative therapies. At City of Hope National Medical Center (COH), we developed a pilot program for bladder cancer patients undergoing cystectomy to provide the benefits of care coordination and palliative care. Methods: 72 patients underwent cystectomy at COH from 2011-2013, the average case mix index was 3.51, the average length of stay (LOS) was 10.65 days, the LOS index was.92, Cost index 1.61, 30-day readmission rate 32.14%, and the most common causes for readmission were infection and dehydration. Based on comparative data, the urology service supported development of a novel pathway by a multidisciplinary team. The goals of the pathway are to facilitate navigation through the healthcare system, integrate tablet-based bio-psycho-social screening to proactively address patient and caregiver needs and goals, optimize medications to improve symptom management and recovery, empower patients with teach-back education, have anticipated interventions for likely readmission reasons, and develop effective collaboration amongst multidisciplinary providers across settings. The metrics include LOS, readmission rates, patient and family satisfaction, advanced directives on file, and cost index. Results: Hospital leadership and provider buy in was obtained, a daily rounding multidisciplinary team was created, change champions were identified, staff engagement increased, and COH and community agency staff were equipped with needed skills and support. Care model diagrams and clinical pathway orders were developed. Education materials were revised and updated. The pilot launched in April of 2014. Conclusions: We believe that a care coordination model with early integration of palliative care will improve the effectiveness of care delivered to our bladder cancer patients. A six-month retrospective review will be done to assess metric achievement.

Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy

2010 ◽  
Vol 6 (1) ◽  
pp. 46-56 ◽  
Author(s):  
Maria J. Silveira ◽  
Charles W. Given ◽  
Barbara Given ◽  
Ann Marie Rosland ◽  
John D. Piette
Keyword(s):  
Cancer Patients ◽  
Symptom Severity ◽  
Secondary Analysis ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Positive Effects ◽  
Cognitive Behavioural ◽  
Symptom Frequency ◽  
Over Time

Objective: To measure the agreement between cancer patients’ and family caregivers’ perceptions of the patients’ symptom severity, and the association between changes in caregiver accuracy and changes in outcomes. Methods: Secondary analysis of baseline and 10-week follow-up data from 142 cancer patient/caregiver dyads. Patient/caregiver agreement about symptom burden was measured for the 8 most prevalent symptoms and overall. Bivariate analyses examined the patient and caregiver characteristics associated with caregivers who were overestimators, underestimators or accurate at baseline. We tested the relationship between change in caregiver accuracy and both caregiver behaviour (e.g. use of information, hours spent caregiving) and patient outcomes (e.g. total symptom severity and frequency). Results: At baseline, caregivers overestimated the severity of 17 out of 18 symptoms; 50% predicted mean symptom severity accurately. Accuracy worsened over time for 51%, stayed the same for 36%, and improved for 13%. While not statistically significant, caregivers whose accuracy improved over time had patients who reported greater declines in: symptom severity, number of symptoms, symptom interference, total symptom frequency and depression. In addition, these caregivers experienced greater reductions in their use of information and hours helping the patient. Discussion: Caregivers typically over-estimate cancer patients’ symptom burden and accuracy does not improve over time. Improving caregiver accuracy may boost the positive effects of cognitive behavioural interventions designed to improve cancer patients’ quality of life.

The Relationship Between Symptom Severity and Caregiver Burden in Cancer Patients Under Palliative Care: A Cross-Sectional Study

2021 ◽  
pp. 082585972110457
Author(s):  
Emir Celik ◽  
Muhammed Samil Aslan ◽  
Nilay Sengul Samanci ◽  
Mehmet Karadag ◽  
Tarik Saglam ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Caregiver Burden ◽  
Symptom Severity ◽  
Well Being ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Incurable Cancer ◽  
Cross Sectional ◽  
Mean Values

Introduction Hospitalization is a stressful experience both for primary caregivers (PCs) and cancer patients alike. Although there is significant evidence that PCs of cancer patients can experience significant caregiver burden (CB), less is known about the relationships between PCs and patient symptom severity that influence CB. Methods: In this cross-sectional study, measures of the symptom severity were obtained from cancer patients. The PCs were assessed for CB. Associations between patients' symptoms and demographic characteristics and CB were investigated using multivariate analyses. Results: A total of 98 participants (patient-caregiver dyads) filled the questionnaires. According to the Zarit Burden Interview results, 65.3% of PCs had a high CB. Pain, tiredness, nausea, depression, drowsiness, well-being, and dyspnea had significantly higher mean values in those with high CB (p < .05). Financial difficulties, first-degree relationships with the patient, higher anxiety levels, and more pronounced tiredness appear to be the variables most predictive with high CB. Conclusion: In conclusion, the present study showed CB of PCs among a group of hospitalized incurable cancer patients. PCs of more symptomatic cancer patients had a higher CB, according to our findings. This emphasized the significance of palliative care. Appropriate guidance should be provided for the psychostress caused by the CB.

scholarly journals Rational and design of SATRACD study: detecting subclinical anthracycline therapy related cardiac dysfunction in low income country

2021 ◽  
Vol 21 (2) ◽  
pp. 647-654
Author(s):  
Wanzhu Zhang ◽  
Feriel Azibani ◽  
Emmy Okello ◽  
James Kayima ◽  
Victoria Walusansa ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Cancer Patients ◽  
Low Income ◽  
Cardiac Dysfunction ◽  
Cardiovascular Outcome ◽  
Sub Saharan Africa ◽  
Income Country ◽  
Health Concern ◽  
Low Income Country ◽  
Anthracycline Therapy

Background: Anthracycline therapy-related cardiac dysfunction (ATRCD) is the most notorious adverse side-effect of chemotherapy. It has become a significant cardiovascular health concern for long-term cancer survivors. With the emerging concept of subclinical ATRCD and newer diagnostictools (Speckle Tracking Echocardiography (STE) and biomarkers), detecting anthracycline cardiac toxicity at an early stage has become an important step to prevent severe cardiac dysfunction and improve the cardiovascular outcome in cancer survivors. Despite the increasing population at risk in sub-Saharan Africa (SSA), there is no contemporary data in Uganda to address the burden, pathogenesis and risk factors of subclinical ATRCD. This big gap in knowledge has led to a lack of local guidelines for monitoring and management of ATRCD. Methods: SATRACD (Detecting Subclinical Anthracycline Therapy Related Cardiac Dysfunction In Low Income Country) study is an observational prospective cohort study. Three hundred and fifty-three anthracycline naïve cancer patients will be recruited at baseline. Patients are followed up on completion of anthracycline-based chemotherapy and at 6 months after completion of anthracycline therapy. Data on demographics, cancer profile and clinical presentation will be collected at baseline. Comprehensive cardiac assessment will be performed at each visit, including electrocardiogram, conventional echo- cardiography, STE, cardiac and oxidative stress markers. We will be able to determine the incidence of subclinical and clinical ATRCD at 6 months after completion of anthracycline therapy, determine whether hypertension is a major risk factor for ATRCD, evaluate the role of conventional echocardiography parameters, and biomarkers for detecting subclinical ATRCD. Conclusion: This SATRACD study will provide contemporary data on Ugandan cancer patients who have subclinical and clinical ATRCD, help in the development of local strategies to prevent and manage ATRCD, and improve cardiovascular outcome for Ugandan cancer survivors. Keywords: SATRACD study; subclinical anthracycline therapy; cardiac dysfunction; low income country.

Feasibility and preliminary efficacy of an interactive portal for lung cancer patients.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 201-201
Author(s):  
Wim G Groen ◽  
Wilma Kuijpers ◽  
Hester SA Oldenburg ◽  
Michel W.J.M. Wouters ◽  
Neil K Aaronson ◽  
...  
Keyword(s):  
Physical Activity ◽  
Lung Cancer ◽  
Cancer Patients ◽  
Patient Activation ◽  
Small Sample ◽  
Point Scale ◽  
Lung Cancer Patients ◽  
Sf 36 ◽  
Patient Reported ◽  
Over Time

201 Background: “MijnAVL” is an interactive portal for cancer patients that includes patient education, an overview of appointments, access to the electronic medical record, patient-reported outcomes and related feedback, and tailored physical activity support. The aim of this study was to evaluate MijnAVL’s feasibility and preliminary efficacy among lung cancer patients. Methods: We included individuals currently or recently treated for lung cancer with curative intent (surgery or radiotherapy). At baseline, they completed a questionnaire on sociodemographics, expectations of MijnAVL and three effect measures: patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for 4 months. After this period, log data were collected retrospectively and participants completed questions on satisfaction and the effect measures. Results: We included 37 patients (mean age 59.6 years). The mean number of logins was 11.2 with a mean duration of 12.9 minutes. Eighty-nine percent of patients indicated that MijnAVL was easy to use and 82% was positive about using it. Many patients (69%) indicated that MijnAVL was a valuable addition to the care they received and 56% indicated that it helped them to have more control over their health. All features were frequently used and rated 7 or higher on a 10 point scale. Website user satisfaction was rated, on average, 3.9 on a 5 point scale. Patient activation decreased over time from 64.8 to 59.4 (p= 0.049), meaning patients felt less activated. For the SF-36, we found no significant changes over time. In general, levels of physical activity did not change, although vigorous physical activity tended to increase over time (from median of 0 to 360 MET-minutes per week (p= .053)). Conclusions: These results indicate that using MijnAVL is feasible in lung cancer patients. Most users indicated that MijnAVL was useful and easy to use. The efficacy of the patient portal could not be substantiated, which could be due to small sample size, the intervention itself, the (insensitivity of) outcome measures, or a combination of these. Further research is needed to find effective ways to improve and adequately measure patient empowerment in lung cancer survivors.

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