Background: Patient participation in goal setting is important to deliver client-centered care. In daily practice, however, patient involvement in goal setting is not optimal. Patient-specific instruments, such as the Patient Specific Complaints (PSC) instrument, can support the goal-setting process because patients can identify and rate their own problems. The aim of this study is to explore patients’ experiences with the feasibility of the PSC, in the physiotherapy goal setting. Method: We performed a qualitative study. Data were collected by observations of physiotherapy sessions (n=23) and through interviews with patients (n=23) with chronic conditions in physiotherapy practices. Data were analyzed using directed content analysis. Results: The PSC was used at different moments and in different ways. Two feasibility themes were analyzed. First was the perceived ambiguity with the process of administration: patients perceived a broad range of experiences, such as emotional and supportive, as well as feeling a type of uncomfortableness. The second was the perceived usefulness: patients found the PSC useful for themselves – to increase awareness and motivation and to inform the physiotherapist – as well as being useful for the physiotherapist – to determine appropriate treatment for their personal needs. Some patients did not perceive any usefulness and were not aware of any relation with their treatment. Patients with a more positive attitude toward questionnaires, patients with an active role, and health-literate patients appreciated the PSC and felt facilitated by it. Patients who lacked these attributes did not fully understand the PSC’s process or purpose and let the physiotherapist take the lead. Conclusion: The PSC is a feasible tool to support patient participation in the physiotherapy goal setting. However, in the daily use of the PSC, patients are not always fully involved and informed. Patients reported varied experiences related to their personal attributes and modes of administration. This means that the PSC cannot be used in the same way in every patient. It is perfectly suited to use in a dialogue manner, which makes it very suitable to improve goal setting within client-centered care.
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Introduction: Patient education is a relatively new science within the field of health care. In the past it consisted mainly of the transfer of knowledge and mostly biomedically based advice. Research has shown this to not be effective and sometimes counterproductive. As health care has moved away from applying a traditional paternalistic approach of ‘doctor knows best’ to a patient-centered care approach, patient education must be tailored to meet persons' individual needs. Purpose: The purpose of this master paper is to increase awareness of patients' health literacy levels. Health literacy is linked to literacy and entails people's knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgments and take decisions in everyday life concerning health care, disease prevention and health promotion to maintain or improve quality of life during the life course. Many patients have low health literacy skills, and have difficulty with reading, writing, numeracy, communication, and, increasingly, the use of electronic technology, which impede access to and understanding of health care information. Implications: Multiple professional organizations recommend using universal health literacy precautions to provide understandable and accessible information to all patients, regardless of their literacy or education levels. This includes avoiding medical jargon, breaking down information or instructions into small concrete steps, limiting the focus of a visit to three key points or tasks, and assessing for comprehension by using the teach back cycle. Printed information should be written at or below sixth-grade reading level. Visual aids can enhance patient understanding.
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Background: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
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Rationale, aims and objective: Primary Care Plus (PC+) focuses on the substitution of hospital-based medical care to the primary care setting without moving hospital facilities. The aim of this study was to examine whether population health and experience of care in PC+ could be maintained. Therefore, health-related quality of life (HRQoL) and experienced quality of care from a patient perspective were compared between patients referred to PC+ and to hospital-based outpatient care (HBOC). Methods: This cohort study included patients from a Dutch region, visiting PC+ or HBOC between December 2014 and April 2018. With patient questionnaires (T0, T1 and T2), the HRQoL and experience of care were measured. One-to-two nearest neighbour calliper propensity score matching (PSM) was used to control for potential selection bias. Outcomes were compared using marginal linear models and Pearson chi-square tests. Results: One thousand one hundred thirteen PC+ patients were matched to 606 HBOC patients with well-balanced baseline characteristics (SMDs <0.1). Regarding HRQoL outcomes, no significant interaction terms between time and group were found (P > .05), indicating no difference in HRQoL development between the groups over time. Regarding experienced quality of care, no differences were found between PC+ and HBOC patients. Only travel time was significantly shorter in the HBOC group (P ≤ .001). Conclusion: Results show equal effects on HRQoL outcomes over time between the groups. Regarding experienced quality of care, only differences in travel time were found. Taken as a whole, population health and quality of care were maintained with PC+ and future research should focus more on cost-related outcomes.
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Background: Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and external justification (macro level). However, a deeper understanding of implementation issues of these measures is necessary. The narrative Patient Reported Experience Measure “Dit vind ik ervan!” (English “How I feel about it!”) is used in the Dutch disability care sector, but insight into its’ current use is lacking. We aimed to provide insight into experiences with the implementation and current ways of working with “Dit vind ik ervan!” as an integrated measurement strategy. A descriptive qualitative study was done at a disability care organisation. Data were collected by nine documentations, seven observations, 11 interviews and three focus groups. We applied deductive content analysis using the Consolidated Framework for Implementation Research as a framework. Results: Our analysis revealed facilitators and barriers for the implementation of “Dit vind ik ervan!”. We found most barriers at the micro level. Professionals and clients appreciated the measure’s narrative approach, but struggled to perform it with communication vulnerable clients. Some clients, professionals and team leaders were unfamiliar with the measure’s aim and benefit. On the meso level, implementation was done top-down, and the management’s vision using the measure as an integrated measurement approach was insufficiently shared throughout the organisation. Conclusions: Our study shows that Patient Reported Experience Measures have the potential to be used as an integrated measurement strategy. Yet, we found barriers at the micro level, which might have influenced using the measurement outcomes at the meso and macro level. Tailored implementation strategies, mostly focusing on designing and preparing the implementation on themicro level, need to be developed in co-creation with all stakeholders.
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Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients’ healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients’ healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery.
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ObjectiveWe designed a Patient and Family Participation Education Program (PFEP) with the aim of fostering a positive attitude and enhancing the competencies of hospital nurses required for effective patient and family participation in care.MethodsIn a Dutch university hospital, we conducted a before-after study. The PFEP comprising three courses: family conversation, supporting shared decision-making, and health literacy. We assessed nursing attitudes using the FINC-NA questionnaire and competencies with a separate questionnaire before and three months after the program. Changes in attitudes and competencies were analyzed using regression analysis.ResultsTwenty-two nurses participated in the education group, and 58 participated as controls.After three months, the change scores for the education group were statistically significantly higher on the total attitude score (FINC-NA) compared to the control group. Moreover, in six out of twelve competencies, the education group demonstrated significantly higher scores than the control group.ConclusionThe educational program appeared effective in promoting nurses' attitudes and feelings of competencies towards patient and family-centered care.InnovationA blended education program focusing on patient and family has potential value for implementation in hospital care settings, especially for hospitals aiming to cultivate a more patient- and family-centered environment.
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Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0–1, 1–2.5 and 2.5–5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1–2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.
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Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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Background and Objective: To develop a health care value framework for physical therapy primary health care organizations including a definition. Method: A scoping review was performed. First, relevant studies were identified in 4 databases (n = 74). Independent reviewers selected eligible studies. Numerical and thematic analyses were performed to draft a preliminary framework including a definition. Next, the feasibility of the framework and definition was explored by physical therapy primary health care organization experts. Results: Numerical and thematic data on health care quality and context-specific performance resulted in a health care value framework for physical therapy primary health care organizations—including a definition of health care value, namely “to continuously attain physical therapy primary health care organization-centered outcomes in coherence with patient- and stakeholder-centered outcomes, leveraged by an organization’s capacity for change.” Conclusion: Prior literature mainly discussed health care quality and context-specific performance for primary health care organizations separately. The current study met the need for a value-based framework, feasible for physical therapy primary health care organizations, which are for a large part micro or small. It also solves the omissions of incoherent literature and existing frameworks on continuous health care quality and context-specific performance. Future research is recommended on longitudinal exploration of the HV (health care value) framework.
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