Background: Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim: In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design: This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method: Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion: The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.
PurposeTo assess the experience and perceived added value of an e-Health application during the physical therapy treatment of patients with temporomandibular disorders (TMD).Materials and methodsA mixed-methods study including semi-structured interviews was performed with orofacial physical therapists (OPTs) and with TMD patients regarding their experience using an e-Health application, Physitrack. The modified telemedicine satisfaction and usefulness questionnaire and pain intensity score before and after treatment were collected from the patients.ResultsTen OPTs, of which nine actively used Physitrack, described that the e-Health application can help to provide personalised care to patients with TMD, due to the satisfying content, user-friendliness, accessibility, efficiency, and ability to motivate patients. Ten patients, of which nine ended up using Physitrack, felt that shared decision-making was very important. These patients were positive towards the application as it was clear, convenient, and efficient, it helped with reassurance and adherence to the exercises and overall increased self-efficacy. This was mostly built on their experience with exercise videos, as this feature was most used. None of the OPTs or patients used all features of Physitrack. The overall satisfaction of Physitrack based on the telemedicine satisfaction and usefulness questionnaire (TSUQ) was 20.5 ± 4.0 and all patients (100%) showed a clinically relevant reduction of TMD pain (more than 2 points and minimally 30% difference).ConclusionOPTs and patients with TMD shared the idea that exercise videos are of added value on top of usual physical therapy care for TMD complaints, which could be delivered through e-Health.
PURPOSE: To evaluate the feasibility and outcomes of a tailored, goal-directed, and exercise-based physical therapy program for patients with metastatic breast cancer (MBC).METHODS: This was an observational, uncontrolled feasibility study. The physical therapy intervention was highly tailored to the individual patient's goals, abilities, and preferences and could include functional, strength, aerobic, and relaxation exercises. Feasibility outcomes were participation rate (expected: 25%), safety, and adherence (percentage of attended sessions relative to scheduled sessions). Additional outcomes were goal attainment, self-reported physical functioning, fatigue, health-related quality of life, and patient and physical therapist satisfaction with the program.RESULTS: Fifty-five patients (estimated participation rate: 34%) were enrolled. Three patients did not start the intervention due to early disease progression. An additional 22 patients discontinued the program prematurely, mainly due to disease progression. Median intervention adherence was 90% and no major intervention-related adverse events occurred. A goal attainment score was available for 42 patients (of whom 29 had completed the program and 13 had prematurely dropped out). Twenty-two (52%) of these patients achieved their main goal fully or largely and an additional 15 patients (36%) partially. Eighty-five percent would "definitely recommend" the program to other patients with MBC. We observed a modest improvement in patient satisfaction with physical activities (Cohen's dz 0.33).CONCLUSION: The tailored intervention program was feasible in terms of uptake, safety, and outcomes and was highly valued by patients and physical therapists. However, disease progression interfered with the program, leading to substantial dropout.TRIAL REGISTRATION: NTR register: NTR6475.
