The aim of this study was to describe patients' experiences of, and preferences for, surgical wound care discharge education and how these experiences predicted their ability to self-manage their surgical wounds. A telephone survey of 270 surgical patients was conducted across two hospitals two weeks after discharge. Patients preferred verbal (n = 255, 94.8%) and written surgical wound education (n = 178, 66.2%) from medical (n = 229, 85.4%) and nursing staff (n = 211, 78.7%) at discharge. The most frequent education content that patients received was information about follow-up appointments (n = 242, 89.6%) and who to contact in the community with wound care concerns (n = 233, 86.6%). Using logistic regression, patients who perceived that they participated in surgical wound care decisions were 6.5 times more likely to state that they were able to manage their wounds at home. Also, patients who agreed that medical and/or nursing staff discussed wound pain management were 3.1 times more likely to report being able to manage their surgical wounds at home. Only 40% (107/270) of patients actively participated in wound-related decision-making during discharge education. These results uncovered patient preferences, which could be used to optimise discharge education practices. Embedding patient participation into clinical workflows may enhance patients' self-management practices once home.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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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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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: Patients with heart failure (HF) need long-term and complex care delivered by healthcare professionals in primary and secondary care. Although guidelines on optimal HF care exist, no specific description of components that are applied for optimal HF care at home exist. The objective of this review was to describe which components of HF (home) care are found in research studies addressing homecare interventions in the HF population. Methods: The Pubmed, Embase, Cinahl, and Cochrane databases were searched using HF-, homecare services-, and clinical trial-related search terms. Results: The literature search identified 703 potentially relevant publications, out of which 70 articles were included. All articles described interventions with two or more of the following components: multidisciplinary team, continuity of care and care plans, optimized treatment according to guidelines, educational and counselling of patients and caregivers, and increased accessibility to care. Most studies (n=65, 93%) tested interventions with three components or more and 20 studies (29%) used interventions including all five components. Conclusions: There a several studies on HF care at home, testing interventions with a variety in number of components. Comparing the results to current standards, aspects such as collaboration between primary care and hospital care, titration of medication, and patient education can be improved. © 2012 The European Society of Cardiology.
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Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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Abstract Background: Lifestyle interventions for severe mental illness (SMI) are known to have small to modest efect on physical health outcomes. Little attention has been given to patient-reported outcomes (PROs). Aim: To systematically review the use of PROs and their measures, and quantify the efects of lifestyle interventions in patients with SMI on these PROs. Methods: Five electronic databases were searched (PubMed/Medline, Embase, PsycINFO, CINAHL, and Web of Science) from inception until 12 November 2020 (PROSPERO: CRD42020212135). Randomised controlled trials (RCTs) evaluating the efcacy of lifestyle interventions focusing on healthy diet, physical activity, or both for patients with SMI were included. Outcomes of interest were PROs. Results: A total of 11.267 unique records were identifed from the database search, 66 full-text articles were assessed, and 36 RCTs were included, of which 21 were suitable for meta-analyses. In total, 5.907 participants were included across studies. Lifestyle interventions had no signifcant efect on quality of life (g=0.13; 95% CI=−0.02 to 0.27), with high heterogeneity (I2 =68.7%). We found a small efect on depression severity (g=0.30, 95% CI=0.00 to 0.58, I2 =65.2%) and a moderate efect on anxiety severity (g=0.56, 95% CI=0.16 to 0.95, I2 =0%). Discussion: This meta-analysis quantifes the efects of lifestyle interventions on PROs. Lifestyle interventions have no signifcant efect on quality of life, yet they could improve mental health outcomes such as depression and anxiety symptoms. Further use of patient-reported outcome measures in lifestyle research is recommended to fully capture the impact of lifestyle interventions.
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Background: Home-based exercise is an important part of physical therapy treatment for patients with low back pain. However, treatment effectiveness depends heavily on patient adherence to home-based exercise recommendations. Smartphone apps designed to support home-based exercise have the potential to support adherence to exercise recommendations and possibly improve treatment effects. A better understanding of patient perspectives regarding the use of smartphone apps to support home-based exercise during physical therapy treatment can assist physical therapists with optimal use and implementation of these apps in clinical practice. Objective: The aim of this study was to investigate patient perspectives on the acceptability, satisfaction, and performance of a smartphone app to support home-based exercise following recommendations from a physical therapist. Methods: Using an interpretivist phenomenology approach, 9 patients (4 males and 5 females; aged 20-71 years) with nonspecific low back pain recruited from 2 primary care physical therapy practices were interviewed within 2 weeks after treatment ended. An interview guide was used for the interviews to ensure that different aspects of the patients' perspectives were discussed. The Physitrack smartphone app was used to support home-based exercise as part of treatment for all patients. Data were analyzed using the "Framework Method" to assist with interpretation of the data. Results: Data analysis revealed 11 categories distributed among the 3 themes "acceptability," "satisfaction," and "performance." Patients were willing to accept the app as part of treatment when it was easy to use, when it benefited the patient, and when the physical therapist instructed the patient in its use. Satisfaction with the app was determined by users' perceived support from the app when exercising at home and the perceived increase in adherence. The video and text instructions, reminder functions, and self-monitor functions were considered the most important aspects for performance during treatment. The patients did not view the Physitrack app as a replacement for the physical therapist and relied on their therapist for instructions and support when needed. Conclusions: Patients who use an app to support home-based exercise as part of treatment are accepting of the app when it is easy to use, when it benefits the patient, and when the therapist instructs the patient in its use. Physical therapists using an app to support home-based exercise can use the findings from this study to effectively support their patients when exercising at home during treatment.
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Introduction: Patient information holds an important role in knee arthroplasty surgery regarding patients’ expectations and outcomes after surgery. The purpose of the present study was to explore the experiences and opinions of patients undergoing knee arthroplasty (KA) surgery on an information brochure provided preoperatively. Methods: A qualitative case study of 8 patients using individual semi-structured interviews was conducted to explore patients’ opinions on an information brochure in KA surgery. Results: Patients rated the brochure as good and recommended its use. Unsatisfactory information regarding wound healing, pain expectations, postoperative exercises and use of walking aids was reported. Patients stated that the table of contents was insufficient and the size of the brochure (A4-format) too large. Patients reported to have no need for additional digital sources (e.g. applications, websites). Conclusion: These opinions support the use of an information brochure. The reported opinions were used to improve the brochure. Future research should focus on the improvement of information sources by involving patients (and other users) in the development process in which the information is tailored towards patient needs.
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