scholarly journals Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach

10.2196/21238 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e21238
Author(s):  
Hande Sungur ◽  
Nida Gizem Yılmaz ◽  
Brittany Ming Chu Chan ◽  
Maria E T C van den Muijsenbergh ◽  
Julia C M van Weert ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Patient Education ◽  
Patient Participation ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Mother Tongue ◽  
Patient Rights ◽  
Study Phase ◽  
Patients With Cancer

Background Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. Objective This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. Methods The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. Results The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool’s ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients’ rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. Conclusions Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

scholarly journals Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach (Preprint)

2020 ◽  
Author(s):  
Hande Sungur ◽  
Nida Gizem Yılmaz ◽  
Brittany Ming Chu Chan ◽  
Maria E T C van den Muijsenbergh ◽  
Julia C M van Weert ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Patient Education ◽  
Patient Participation ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Mother Tongue ◽  
Patient Rights ◽  
Ease Of Use ◽  
Patients With Cancer

BACKGROUND Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called <i>Health Communicator</i> was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. OBJECTIVE This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. METHODS The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The <i>listen</i> phase consisted of a needs assessment. The <i>plan</i> phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the <i>do</i> phase, 6 audiovisual QPLs on <i>patient rights</i>, <i>treatment</i>, <i>psychosocial support</i>, <i>lifestyle and access to health care services</i>, <i>patient preferences</i>, and <i>clinical trials</i> were created. Additionally, 5 patient education videos were created about <i>patient rights</i>, <i>psychosocial support</i>, <i>clinical trials</i>, and <i>patient-professional communication</i>. In the <i>study</i> phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the <i>act</i> phase, the oncological model was disseminated to practice. RESULTS The <i>patient rights</i> QPL was chosen most often during the pilot testing in the <i>study</i> phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool’s ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the <i>patients’ rights</i> video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. CONCLUSIONS Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

scholarly journals A Roadmap to Inform Development, Validation and Approval of Digital Mobility Outcomes: The Mobilise-D Approach

2020 ◽  
Vol 4 (1) ◽  
pp. 13-27 ◽  
Author(s):  
Lynn Rochester ◽  
Claudia Mazzà ◽  
Arne Mueller ◽  
Brian Caulfield ◽  
Marie McCarthy ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Health Care Professionals ◽  
Digital Health ◽  
Disease Status ◽  
Proximal Femoral Fracture ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Physical Mobility ◽  
High Level

Health care has had to adapt rapidly to COVID-19, and this in turn has highlighted a pressing need for tools to facilitate remote visits and monitoring. Digital health technology, including body-worn devices, offers a solution using digital outcomes to measure and monitor disease status and provide outcomes meaningful to both patients and health care professionals. Remote monitoring of physical mobility is a prime example, because mobility is among the most advanced modalities that can be assessed digitally and remotely. Loss of mobility is also an important feature of many health conditions, providing a read-out of health as well as a target for intervention. Real-world, continuous digital measures of mobility (digital mobility outcomes or DMOs) provide an opportunity for novel insights into health care conditions complementing existing mobility measures. Accepted and approved DMOs are not yet widely available. The need for large collaborative efforts to tackle the critical steps to adoption is widely recognised. Mobilise-D is an example. It is a multidisciplinary consortium of 34 institutions from academia and industry funded through the European Innovative Medicines Initiative 2 Joint Undertaking. Members of Mobilise-D are collaborating to address the critical steps for DMOs to be adopted in clinical trials and ultimately health care. To achieve this, the consortium has developed a roadmap to inform the development, validation and approval of DMOs in Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease and recovery from proximal femoral fracture. Here we aim to describe the proposed approach and provide a high-level view of the ongoing and planned work of the Mobilise-D consortium. Ultimately, Mobilise-D aims to stimulate widespread adoption of DMOs through the provision of device agnostic software, standards and robust validation in order to bring digital outcomes from concept to use in clinical trials and health care.

scholarly journals Perception of Iranian Patients with Cancer, Their Relatives, and Health Care Professionals Towards Length of Life and Quality of Life: A Local Survey

2021 ◽  
Vol In Press (In Press) ◽  
Author(s):  
Negin Nourbakhsh ◽  
Bahareh Tahani ◽  
Azadeh Moghaddas
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Survival Time ◽  
Health Care Professionals ◽  
Treatment Modalities ◽  
Cancer Center ◽  
Treatment Choices ◽  
Patients With Cancer ◽  
Length Of Life

Background: Recently, therapeutic decision-making in oncology is changed to a big challenge for both patients and involved oncologists due to an increase in available treatment modalities with a variety of benefits or adverse effects. Objectives: The current study aimed at comparing the perception of treatment priorities regarding lengthening of survival time or maintenance of the quality of life (QoL) among patients with cancer by health care professionals (HCPs). Methods: The current cross-sectional study was conducted on patients with cancer, their relatives, and healthcare professionals in the referral cancer center of Omid affiliated to Isfahan University of Medical Sciences. To identify treatment choices, priority, and related variables influencing their opinions, all participants were interviewed using a standard and valid questionnaire in Persian. The collected data were analyzed using the SPSS software version 20, and the P-value less than 0.05 was considered statistically significant. Results: A total of 299 participants, including 100 patients, 109 relatives, and 90 HCPs (74.2% nurses, 20.2% physicians, 5.6% others) participated in the study. The priority of treatment between survival time (66.1% for relatives vs. 47.9% for patients and 21.3% for HCP) and QoL (33.9% vs.52.1% and 78.7%) was significantly different between the three groups (P < 0.001). Most of the HCPs, patients, and their relatives believed that the physician is the only person who should accept the responsibility of treatment choices and process (98.9% vs. 100% and 98%, respectively; P = 0.002). Conclusions: Among the Iranian population, both the length of life and QoL were valuable; however, it was observed that patients with cancer and HCPs preferred mostly to expand the QoL, while the length of life was more valuable for relatives. Also, all patients, their relatives, and HCPs preferred to choose the physicians as the decision-makers. The results of the study can be helpful in choosing treatment regimens and designing clinical trials.

scholarly journals The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views

2019 ◽  
Vol 15 (1) ◽  
pp. 29-38 ◽  
Author(s):  
Tove E Godskesen ◽  
Suzanne Petri ◽  
Stefan Eriksson ◽  
Arja Halkoaho ◽  
Margrete Mangset ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Qualitative Study ◽  
Empirical Research ◽  
Health Care Professionals ◽  
Therapeutic Misconception ◽  
Ethical Challenges ◽  
Know How ◽  
Ethical Concerns ◽  
Clinical Cancer

We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.

Prognosticating futures and the human experience of hope

2007 ◽  
Vol 5 (3) ◽  
pp. 227-239 ◽  
Author(s):  
Sally Thorne ◽  
Valerie Oglov ◽  
Elizabeth-Anne Armstrong ◽  
T. Gregory Hislop
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Secondary Analysis ◽  
Human Experience ◽  
Clinical Encounter ◽  
Care Providers ◽  
Health Care Communication ◽  
Patients With Cancer

Objectives: Communication between health care providers and patients with cancer and other chronic diseases typically references probabilities that certain future events will or will not occur. Beyond the context of diagnostic encounters and the transmission of “bad news,” such “prognostic” communications take place in various forms throughout the illness trajectory. It is well known that such information transmitted badly can have devastating psychosocial consequences for patients and their families and, conversely, that difficult information exchanged with sensitivity can lend tremendous support. This study aimed to extend our understanding of how such communications are received and interpreted by patients, so that we might optimally apply what we know about general principles of effective communication within the particularly challenging context of predicting futures.Methods: We conducted a combined secondary analysis of two prior qualitative studies into patient perceptions of helpful and unhelpful health care communication with 200 cancer patients and 30 persons with chronic illness. These data sets offered a rich resource for comparing perceptions across a range of contextual variables, and secondary analysis focused on future-oriented interactions, including both prognostication and prediction.Results: The accounts of patients with cancer and chronic illness reveal various ways in which health care communications involving future projections interact with their human experience of hope, powerfully shaping their capacity to make sense of and live with serious illness. They include a synthesis of what patients recommend health care professionals know and understand about this challenging dynamic.Significance of results: The findings of this study offer a distinct angle of vision onto the various communications that involve future predictions, illuminating a patient perspective with the potential to inform health care communication approaches that are both informative and therapeutic. As such, the study supports a dynamic understanding of the tenuous balance between hope and honesty in the clinical encounter.

scholarly journals Pharmacy Patronage: Identifying the Roles of Nepalese Pharmacists in Tacking COVID-19

2020 ◽  
Vol 14 (suppl 1) ◽  
pp. 937-943 ◽  
Author(s):  
Asmita Priyadarshini Khatiwada ◽  
Sunil Shrestha
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Pharmaceutical Care ◽  
Health Care System ◽  
Health Care Professionals ◽  
Drug Evaluation ◽  
Pharmacy Services ◽  
The Public ◽  
New Information

Coronavirus disease (COVID-19) pandemic is one of the dire issues currently worldwide. With increasing death tolls every day and with new information regarding disease every minute, it is very important to disseminate the updated and reliable information to the public. Along with other health care professionals, the pharmacists’ role is crucial in preventing the spread and management of the disease. The involvement of pharmacists from clinical trials, drug evaluation to providing pharmaceutical care and other basic pharmacy services in the frontline in this health emergency is undeniable. This commentary focuses on the role of pharmacists in different settings of the health care system and the degree of recognition of the work in Nepal.

Links Between Perceptions and Practices in Patient Education: A Systematic Review

2019 ◽  
Vol 46 (6) ◽  
pp. 1001-1011 ◽  
Author(s):  
Sandrine Roussel ◽  
Mariane Frenay
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Patient Education ◽  
Health Care Professionals ◽  
Quality Criteria ◽  
World Health ◽  
Health Organization ◽  
The Individual ◽  
Meta Analyses

Background. Two decades after “patient education” was defined by the World Health Organization, its integration in health care practices remains a challenge. Perceptions might shed light on these implementation difficulties. This systematic review aims to investigate links between perceptions and patient education practices among health care professionals, paying particular attention to the quality of practices in order to highlight any associated perception. Method. PubMed, PsycINFO, and Scopus were searched using the following search terms: “perceptions,” “patient education,” “health care professionals,” and “professional practices.” PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used. Results. Twenty studies were included. Overall findings supported the existence of links between some perceptions and practices. Links were either correlational or “causal” (generally in a single direction: perceptions affecting practices). Four types of perceptions (perceptions of the task including patient education, perceptions about the patient, perceptions of oneself as a health care professional, and perceptions of the context) were identified as being linked with educational practices. Links can although be mediated by other factors. Results concerning links should, however, be considered with caution as practices were mostly assessed by prevalence measurements, were self-reported and concerned exclusively individual education. When analyzing the quality of practices, the two retained studies highlighted their changing nature and the central role of perceptions with respect to the individual patient. Conclusions. This literature review led us to specify the quality criteria for further research: covering the entire spectrum of patient education, operationalizing variables, exploring specific practices, measuring the quality of practices, developing designs that facilitate causation findings, and considering a bidirectional perspective.

Strategies to Maximize Patient Participation in Clinical Trials

2017 ◽  
pp. 216-221
Author(s):  
Eric H. Rubin ◽  
Mary J. Scroggins ◽  
Kirsten B. Goldberg ◽  
Julia A. Beaver
Keyword(s):  
Clinical Trials ◽  
Patient Participation ◽  
Patient Perspective ◽  
Heterogeneous Population ◽  
Patient Access ◽  
Eligibility Criteria ◽  
Enrollment Rate ◽  
Patients With Cancer ◽  
Multiple Obstacles ◽  
Oncology Drug Development

Despite considerable interest and success in oncology drug development, the minority of patients with cancer diagnoses enroll in clinical trials. Multiple obstacles account for this low enrollment rate. An improvement in patient participation in clinical trials could increase patient access to novel and potentially promising agents, provide faster trial results, and, with implementation of rational eligibility criteria, allow for a better understanding of the drug’s safety and efficacy in a heterogeneous population. We present barriers and potential solutions to maximize patient participation, including a review of the ASCO and Friends of Cancer Research (FoCR) Modernizing Eligibility Criteria Project, U.S. Food and Drug Administration (FDA) regulatory considerations, an industry perspective, and a patient perspective.

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