scholarly journals Development and Validation of a Multidisciplinary Mobile Care System for Patients With Advanced Gastrointestinal Cancer: Interventional Observation Study (Preprint)

2017 ◽  
Author(s):  
Ji Yeong Soh ◽  
Won Chul Cha ◽  
Dong Kyung Chang ◽  
Ji Hye Hwang ◽  
Kihyung Kim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gastric Cancer ◽  
Colon Cancer ◽  
Gastrointestinal Cancer ◽  
Response Rate ◽  
Self Monitoring ◽  
Satisfaction Rate ◽  
Cancer Group ◽  
Care System

BACKGROUND Mobile health apps have emerged as supportive tools in the management of advanced cancers. However, only a few apps have self-monitoring features, and they are not standardized and validated. OBJECTIVE This study aimed to develop and validate a multidisciplinary mobile care system with self-monitoring features that can be useful for patients with advanced gastrointestinal cancer. METHODS The development of the multidisciplinary mobile health management system was divided into 3 steps. First, the service scope was set up, and the measurement tools were standardized. Second, the service flow of the mobile care system was organized. Third, the mobile app (Life Manager) was developed. The app was developed to achieve 3 major clinical goals: support for quality of life, nutrition, and rehabilitation. Three main functional themes were developed to achieve clinical goals: a to-do list, health education, and in-app chat. Thirteen clinically oriented measures were included: the modified Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events questionnaire, Scored Patient-Generated Subjective Global Assessment (PG-SGA), distress, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, International Physical Activity Questionnaire–Short Form, Low anterior resection syndrome score, satisfaction rate, etc. To validate the system, a prospective observational study was conducted. Patients with gastric cancer or colon cancer undergoing chemotherapy were recruited. We followed the subjects for 12 weeks, and selected clinical measures were taken online and offline. RESULTS After the development process, a multidisciplinary app, the Life Manager, was launched. For evaluation, 203 patients were recruited for the study, of whom 101 (49.8%) had gastric cancer, and 102 (50.2%) were receiving palliative care. Most patients were in their fifties (35.5%), and 128 (63.1%) were male. Overall, 176 subjects (86.7%) completed the study. Among subjects who dropped out, the most common reason was the change of patient’s clinical condition (51.9%). During the study period, subjects received multiple health education sessions. For the gastric cancer group, the “general gastric cancer education” was most frequently viewed (322 times), and for the colon cancer group, the “warming-up exercise” was most viewed (340 times). Of 13 measurements taken from subjects, 9 were taken offline (response rate: 52.0% to 90.1%), and 3 were taken online (response rate: 17.6% to 57.4%). The overall satisfaction rate among subjects was favorable and ranged from 3.93 (SD 0.88) to 4.01 (SD 0.87) on the 5-point Likert scale. CONCLUSIONS A multidisciplinary mobile care system for patients with advanced gastrointestinal cancer was developed with clinically oriented measures. A prospective study was performed for its evaluation, which showed favorable satisfaction.

Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

2021 ◽  
pp. 104990912110186
Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Therapeutic Relationships ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Symptom Palliation ◽  
Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

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