Explaining needs for rehabilitation in patients with bone sarcoma and a megaprosthesis: a qualitative, grounded theory study.

PURPOSE: To explain the needs for rehabilitation of patients with bone sarcoma before and after surgical resection and reconstruction with megaprosthesis. MATERIALS AND METHODS: We performed a qualitative study following constructivist grounded theory principles. We purposefully recruited rich cases. Data were collected using semi-structured interviews and analyzed with grounded theory data-analysis. Initial, focused, and theoretical coding were first performed independently by two authors and followed by discussion in consensus meetings with all authors. Ultimately, a conceptual model was created. RESULTS: Thirteen participants were interviewed between March and May 2023. Seven theoretical codes were found. The first is the need to achieve a new normal, being able to function with their medical history and megaprosthesis in a new normal life. Two key values patients needed were being understood and being prepared. Four important conditions that patients needed were: optimal conditions for rehabilitation, a trustworthy physical therapist, a clear closure from rehabilitation, and access to expertise in the hospital. The core category was achieving a new normal. CONCLUSIONS: Patients with bone sarcoma need rehabilitation to achieve a new normal life. With the understanding of needs regarding rehabilitation now gained, the care for patients with bone sarcoma should be better tailored.

Bone sarcoma is a life threatening, disabling disease requiring intensive medical treatment.The goal of rehabilitation should be to help patients achieve a new normal.Rehabilitation professionals will need to acquire the additional knowledge and relevant skills to treat patients.Rehabilitation professionals should prepare the patients by providing clear and uniform information about their rehabilitation.

One-year evaluation of people recovering from COVID-19 receiving allied primary healthcare: A nationwide prospective cohort study.

BACKGROUND: A Dutch nationwide prospective cohort study was initiated to investigate recovery trajectories of people recovering from coronavirus disease 2019 (COVID-19) and costs of treatment by primary care allied health professionals. OBJECTIVES: The study described recovery trajectories over a period of 12 months and associated baseline characteristics of participants recovering from COVID-19 who visited a primary care allied health professional. It also aimed to provide insight into the associated healthcare and societal costs. METHODS: Participants completed participant-reported standardized outcomes on participation, health-related quality of life, fatigue, physical functioning, and costs at baseline (ie, start of the treatment), 3, 6, 9 and 12 months. RESULTS: A total of 1451 participants (64 % women, 76 % mild/moderate severity) with a mean (SD) age of 49 (12) years were included. Linear mixed models showed significant and clinically relevant improvements over time in all outcome measures between baseline and 12 months. Between 6 and 12 months, we found significant but not clinically relevant improvements in most outcome measures. Having a worse baseline score was the only baseline factor that was consistently associated with greater improvement over time on that outcome. Total allied healthcare costs (mean €1921; SEM €48) made up about 3% of total societal costs (mean €64,584; SEM €3149) for the average participant in the cohort. CONCLUSIONS: The health status of participants recovering from COVID-19 who visited an allied health professional improved significantly over a 12-month follow-up period, but nearly the improvement occurred between baseline and 6 months. Most participants still reported severe impairments in their daily lives, and generated substantial societal costs. These issues, combined with the fact that baseline characteristics explained little of the variance in recovery over time, underscore the importance of continued attention for the management of people recovering from COVID-19. TRIAL REGISTRATION: clinicaltrials.gov (NCT04735744).

A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

INTRODUCTION: We present a relationship-centred shared-decision-making (RCSDM) process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro-decisions and involve multiple practitioners, care partners and patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. METHODS: To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disability and person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. FINDINGS: Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro-decision moments (initiation, response and closure). DISCUSSION: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. PATIENT OR PUBLIC CONTRIBUTION: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Evaluating patient participation in value-based healthcare: Current state and lessons learned.

INTRODUCTION: Value-based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. METHODS: This mixed-methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. RESULTS: Thirty-eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. CONCLUSION: The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. PATIENT AND PUBLIC CONTRIBUTION: Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article.

Patients' Needs Regarding Work-Focused Healthcare: A Qualitative Evidence Synthesis.

PURPOSE: To identify, appraise, and synthesize qualitative research evidence exploring patients' needs regarding work-focused healthcare. METHODS: A systematic review was conducted in accordance with the PRISMA statement guidelines to identify studies reporting patients' needs regarding work-focused healthcare. Four databases (MEDLINE, Embase, PsychInfo and Web of Science) were systematically searched from January 2000 until May 2023 and screened in duplicate by pairs of two reviewers. Inclusion criteria were qualitative data collection method, and patients' perspectives regarding healthcare focusing on work when experiencing work-related problems due to chronic medical conditions. Data extraction and synthesis was executed by means of an inductive thematic analysis approach. The quality of the included studies was assessed using the CASP Qualitative Study checklist. Confidence in the review findings was assessed through the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach. RESULTS: Out of 23,677 records, 97 qualitative studies were included. Needs regarding four main themes were identified: (1) Substantive guidance, which comprises the specific content of work-focused healthcare; (2) Clear and continuous process, which comprises clarification and optimization of the work-focused healthcare process; (3) Supportive attitude and behavior, which comprises a positive and supportive attitude and behavior from professionals towards the patients; and (4) Tailored approach, which comprises the delivery of tailored care to the individuals' needs. 17 subthemes were identified. CONCLUSION: The broader insight in patients' needs in work-focused healthcare can help (occupational) healthcare professionals adopt a more patient-centred approach in practice.

Patient-Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation.

BACKGROUND: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient-led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi-CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi-CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi-CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi-CI programme development process and its impact on professional CI rehabilitation and research. METHODS: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. RESULTS: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. CONCLUSION: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. PATIENT OR PUBLIC CONTRIBUTION: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.

Losing, regaining, and continuing to build self-confidence - a qualitative, phenomenological study of being physically active with a type B aortic dissection.

PURPOSE: To gain a comprehensive understanding of experiences related to being physically active in participants with an uncomplicated type B aortic dissection. MATERIALS AND METHODS: We performed a qualitative, phenomenological study. First-person accounts of adults, who at least one year ago had an uncomplicated type B aortic dissection, were collected using semi-structured interviews. The audio recordings of the interviews were transcribed verbatim and analyzed with interpretative phenomenological analysis. RESULTS: We collected, in total, 644 min interview data from 14 participants. Three patterns were interpreted: losing self-confidence, regaining self-confidence, and continuing to build self-confidence. Experiencing symptoms when pushing limits, challenges with energy management, and side effects of medication caused loss of self-confidence. Changes in identity, reaching milestones that reflect improvement, and support from others and tools helped participants regain self-confidence. To continuing to build self-confidence, participants indicated they needed success experiences and activities make life worth living. CONCLUSIONS: Self-confidence in adults with an uncomplicated type B aortic dissection changes immediately after the diagnosis of the aortic dissection. Rehabilitation professionals can support adults regaining and continuing to build self-confidence, aiming for the perfect balance between blood pressure regulation, quality of life, and being physically active.Implications for rehabilitationRehabilitation professionals should support regaining and continuing to build self-confidence related to being physically active in adults with type B aortic dissection in the early stages of recovery and beyond.Adults with an uncomplicated type B aortic dissection want rehabilitation professionals to tell them primarily what is possible (recommendations) rather than what is not allowed (rules).Rehabilitation professionals should help adults with an uncomplicated type B aortic dissection to explore, push and, ultimately, accept limits related to exercise tolerance.

The effectiveness of a protocol without routine radiographs for follow-up of adolescent idiopathic scoliosis patients (CURVE): a study protocol.

BACKGROUND AND PURPOSE: Current follow-up protocols for adolescent idiopathic scoliosis (AIS) are based on consensus and consist of regular full-spine radiographs to monitor curve progression and surgical complications. Consensus exists to avoid inappropriate use of radiographs in children. It is unknown whether a standard radiologic follow-up (S-FU) approach is necessary or if a patient-empowered follow-up (PE-FU) approach can reduce the number of radiographs without treatment consequences. METHODS AND ANALYSES: A nationwide multicenter pragmatic randomized preference trial was designed for 3 follow-up subgroups (pre-treatment, post-brace, post-surgery) to compare PE-FU and S-FU. 812 patients with AIS (age 10-18 years) will be included in the randomized trial or preference cohorts. Primary outcome is the proportion of radiographs with a treatment consequence for each subgroup. Secondary outcomes consist of the proportion of patients with delayed initiation of treatment due to non-routine radiographic follow-up, radiation exposure, societal costs, positive predictive value, and interrelation of clinical assessment, quality of life, and parameters for initiation of treatment during follow-up. Outcomes will be analyzed using linear mixed-effects models, adjusted for relevant baseline covariates, and are based on intention-to-treat principle. Study summary: (i) a national, multicenter pragmatic randomized trial addressing the optimal frequency of radiographic follow-up in patients with AIS; (ii) first study that includes patient-empowered follow-up; (iii) an inclusive study with 3 follow-up subgroups and few exclusion criteria representative for clinical reality; (iv) preference cohorts alongside to amplify generalizability; (v) first study conducting an economic evaluation comparing both follow-up approaches.

The association of physical activity and sedentary behaviour with low back pain disability trajectories: A prospective cohort study.

BACKGROUND: Multiple factors influence the recovery process of low back pain (LBP). The identification and increased knowledge of risk factors might contribute to a better understanding of the course of LBP. OBJECTIVES: To investigate the association of habitual physical activity (PA) and sedentary behaviour (SB), measured at baseline, with disability trajectories in adults with LBP. METHODS: A prospective cohort study where habitual PA levels were measured using the Short QUestionnaire to ASsess Health enhancing physical activity (SQUASH), SB was calculated as average sedentary hours per day, and LBP disability using the Oswestry Disability Index (ODI). Participants completed the questionnaires at one and a half, three, six, and twelve months. Linear mixed models were estimated to describe the association of habitual PA levels SB measured at baseline with disability trajectories. Other predictors were gender, education level, age, pain, number of previous episodes of LBP, and duration of LBP. RESULTS: Habitual SB measured at baseline in adults (n = 347) with LBP were not associated with disability trajectories. For PA, participants with one metabolic equivalent of task (MET) hour per day above average recovered 0.04 [95% CI 0.004 to 0.076] points on the ODI per month faster than participants with an average amount of MET hours per day. CONCLUSIONS: Habitual SB was not associated with LBP disability trajectories over a one-year follow-up. High levels of habitual PA at baseline were associated with improved recovery in LBP disability trajectory, but the finding is not clinically relevant.

Towards person-centred work-focused healthcare for people with cardiovascular disease: a qualitative exploration of patients' experiences and needs.

PURPOSE: To explore the experiences and needs concerning work-focused healthcare of patients experiencing problems with work participation due to cardiovascular disease based on all facets of person-centred care. METHODS: Nineteen patients who experienced or continue to experience problems with work participation due to cardiovascular disease participated in semi-structured interviews preceded by preparatory written assignments. The transcripts were analysed by means of directed qualitative content analysis. Adapted principles of the Picker Institute for Person-Centred Care provided a template for the analysis. RESULTS: 28 experiences and needs emerged and were grouped into the eight principles for person-centred work-focused healthcare. Randomly presenting one theme for each of the eight principles, the themes included: (1) frequent encounters with occupational healthcare professionals; (2) substantive work-related advice; (3) transparency in communication; (4) support for family; (5) information provision on the work-focused healthcare process; (6) personal control during the process; (7) empathy for the personal situation; and (8) tailored work-focused support. CONCLUSIONS: The identified experiences and needs for work-focused healthcare of patients experiencing problems with work participation due to cardiovascular disease clearly indicate the need to improve the delivery of person-centred work-focused healthcare to better meet the individual needs of patients.

Provided work-focused healthcare services do not always align with the patient's needs when experiencing disease-related sick leave, potentially impacting their ability to stay in or return to work.This overview of patients' experiences and needs for work-focused healthcare may provide professionals with better insight into the patients' needs and aids to adapt the healthcare provision to these needs.When professionals target the patient's needs, it may facilitate better provision of person-centred work-focused healthcare.

Developing and testing a reflection method for implementation of the informal care guideline in community nursing: Design-based research.

AIM: To develop a reflection method for community nurses and certified nursing assistants to support the implementation of the Dutch Informal Care guideline in daily care. DESIGN: Design-based research. METHODS: A design group and four test groups of community nurses and nursing assistants were formed to develop a reflection method that aligns with the needs and preferences of its end-users. The design and test group meetings were video recorded. The video data were iteratively discussed and analysed thematically to adapt and refine the method and to identify its key features. RESULTS: A final reflection method was developed. Five main themes were identified from the analysis: the group, reflective triggers, knowledge about the guidelines, the coach and preconditions. The themes are linked to nine key features representing the building blocks of the reflection method. The key features are group size, participants with different (educational) backgrounds, pairs of participants, expressing thoughts, video feedback, reflection game, making the connection with the guideline, coaching as a process facilitator and meeting organizational and contextual conditions for implementation. CONCLUSION: An evidence- and practice-based reflection method for community nurses and certified nursing assistants is developed to support the implementation. By involving community nurses and certified nursing assistants, the method closely matches their needs and preferences. Critical elements of the reflection method are a game element, video feedback and working in pairs in a group of participants from different (educational) backgrounds. Guidance is needed to make the transfer from theory to practice. IMPACT: A reflection method for community nurses and certified nursing assistants was developed to enhance care work according to guideline recommendations, aiming to improve the care provided by informal caregivers. REPORT METHOD: The COREQ guideline was used. PATIENT OR PUBLIC CONTRIBUTION: This reflection method was developed in close collaboration with all stakeholders during the entire study.

The association of the STarT Back Screening Tool and type of leg pain with low back pain disability trajectories: a prospective cohort study.

BACKGROUND: Multiple factors influence the recovery process of low back pain (LBP). The identification and increased knowledge of prognostic factors might contribute to a better understanding of the course of LBP. The purpose of this study is to investigate the association of the STarT Back Screening Tool (SBST) risk score and the type of leg pain (non-radiating LBP, referred non-radicular, and radicular radiating leg pain) with the disability trajectory (at baseline, the slope, and recovery at one year) in adults with low back pain. METHODS: This is a prospective cohort study in 347 patients with low back pain who sought physiotherapy care at three primary care practices in the Netherlands. Linear mixed models were estimated to describe the association of the SBST risk score and the type of leg pain with disability at baseline, the slope in the disability trajectory, and at twelve months follow-up. RESULTS: A medium/high risk score on the SBST is associated with higher baseline disability scores on the Oswestry Disability Index (ODI), faster initial recovery, and still a higher disability ODI score at 12 months follow-up. Non-radicular referred and radicular radiating leg pain were associated with worse baseline disability ODI scores in LBP. This association was not present for the initial recovery or at the 12 months follow-up. CONCLUSION: The SBST is associated with the LBP recovery trajectory. The SBST might be a useful tool to predict the disability trajectory in a heterogeneous group of people with low back pain in primary care and might, therefore, be recommended in future clinical practice guidelines. The type of leg pain was not associated with the recovery trajectory of LBP. Future research might focus on evaluating different types of leg pain. TRIAL REGISTRATION: Clinicaltrials.gov: 109,643.

Towards a better understanding of our patients. A qualitative study about how patients and their physiotherapists perceive the recovery of shoulder problems.

OBJECTIVE: To investigate how people with shoulder problems and their physiotherapists perceive the recovery of shoulder problems. METHOD: We performed a qualitative study using semi-structured interviews with patients and their physiotherapists. Nine pairs of patients and physiotherapists (n = 18) were recruited. The transcribed interviews were analyzed in a consecutive multistep iterative process using a conventional content analysis. RESULTS: Analysis of the interviews resulted in three major themes: 'What do I expect from my recovery?', 'Am I recovering?' and 'When do I consider myself recovered?' The patients and physiotherapists talked similarly about the importance of and interdependency between these themes. Central to these three themes are the analysis of the cause of shoulder problems and the experience of uncertainty. Our analyses suggest that there are conceptual differences in how patients and physiotherapists formulate their expectations about recovery, observe the recovering process, and conceptualize when someone may be considered recovered. Different interpretations by the patients of the information provided by the physical therapists appeared to fuel these differences. CONCLUSION: Our results show that the concept of recovery is defined by patients and physiotherapists in three distinct themes. Within these themes the patients and physiotherapists differ substantially in their conceptualization of the recovery. IMPACT STATEMENT: This insight in the concept of recovery can help patients and physiotherapists better understand each other, enhance the alignment of ideas about the care process, and support making decisions together. Physiotherapists should be aware that patients might interpret their words, explanations, and expectations substantially different.

Using feedback on patient health outcomes to improve orthopaedic physical therapist practice: a quality improvement study.

OBJECTIVE: Measuring health outcomes plays an important role in patient-centred healthcare. When aggregated across patients, outcomes can provide data for quality improvement (QI). However, most physical therapists are not familiar with QI methods based on patient outcomes. This mixed-methods study aimed to develop and evaluate a QI programme in outpatient physical therapy care based on routinely collected health outcomes of patients with low-back pain and neck pain. METHODS: The QI programme was conducted by three teams of 5-6 physical therapists from outpatient settings. Plan-do-study-act cycles were used based on team-selected goals. Monthly feedback reports of process and outcomes of care, including pre-post treatment changes in Oswestry Disability Index (ODI) and Neck Disability Index (NDI), guided the QI efforts. Primary outcomes were pre-QI and post-QI changes in knowledge and attitudes towards outcome measures through a survey, and administered and self-reported compliance with using the ODI and NDI. Semistructured interviews and a focus group were conducted to evaluate the perceived value of the programme. RESULTS: Post-QI, the survey showed improvements in two items related to the role of patients and implementation of outcome measures. Registered pre-QI and post-QI completion rates were high at intake (ODI:91% pre, 88% post; NDI:75% pre, 84% post), while completion rates at discharge improved post-QI (ODI:14% pre, 66% post; NDI: 32% pre, 50% post). Perceived benefits of the QI programme included clinician and institutional accountability to processes and strategies aimed at continuous improvement in patient care. An important facilitator for programme participation was autonomy in project selection and development, while a main barrier was the time required to set up the QI project. CONCLUSION: A QI programme based on the feedback of routinely collected health outcomes of patients with low back pain and neck pain was feasible and well accepted by three pilot teams of physical therapists.

Nurturing the Seeds of Participation: Unveiling the Foundational Path for Understanding Aging in Place Barriers and Facilitators From the Perspective of Older Adults Using Mixed Methods and Translational Science.

Participation in society is a cornerstone for quality of life, active aging, and aging in place. While the majority of older adults prefer aging in place, health and financial challenges can hinder this vision. Conducted in suburban South Jersey, this study utilized mixed methods, including surveys and interviews with older adult participants. Surveys indicated that satisfaction with participation in the community is influenced by functional ability, healthcare service availability, and information access. Interviewees identified suggestions to overcome barriers (e.g., improve access to community and address ageism). Combined results provide a theory of change which suggests older adults' empowerment in community participation hinges on home living support, participation options aligning with ability and interest, and accessible information on community events. This person-centered planning approach emphasizes the importance of older adult and stakeholder participation in foundational community planning, offering translational foundational tools for evidence-based strategies to engage them in future community action plans (CAPs).

Management of non-compressible torso hemorrhage of the abdomen in civilian and military austere environments: a scoping review.

Background: Non-compressible abdominal hemorrhage (NCAH) is the leading cause of potentially preventable deaths in both civilian and military austere environments, and an improvement in mortality due to this problem has not been demonstrated during the past quarter century. Several innovations have been developed to control hemorrhage closer to the point of injury. Objective: This review assessed NCAH interventions in civilian and military settings, focusing on austere environments. It identified innovations, effectiveness, and knowledge gaps for future research. Methodology: The Joanna Briggs Institute for Evidence Synthesis methodology guided this scoping review to completion. Studies evaluating NCAH with human participants in civilian and military austere environments that were eligible for inclusion were limited to English language studies published between December 1990 and January 2023. The PCC (Participant, Concept, Context) framework was used for data synthesis. Deductive and inductive thematic analyses were used to assess the literature that met inclusion criteria, identify patterns/themes to address the research questions and identify common themes within the literature. A stakeholder consultation was conducted to review and provide expert perspectives and opinions on the results of the deductive and inductive thematic analyses. Results: The literature search identified 868 articles; 26 articles met the inclusion criteria. Textual narrative analysis of the 26 articles resulted in the literature addressing four main categories: NCAH, penetrating abdominal trauma, resuscitative endovascular balloon occlusion of the aorta (REBOA), and ResQFoam. The deductive thematic analysis aimed to answer three research questions. Research question 1 addressed the effectiveness of REBOA, damage control resuscitation, and damage control surgery in managing NCAH in austere environments. No effectiveness studies were found on this topic. Research question 2 identified three knowledge gaps in NCAH management in austere environments. The analysis identified early hemorrhage control, prehospital provider decision-making ability, and REBOA implementation as knowledge gaps in NCAH. Research question 3 identified five innovations that may affect the management of NCAH in the future: transport of patients, advanced resuscitative care, expert consultation, REBOA implementation, and self-expanding foam implementation. The inductive thematic analysis resulted in four recurrent themes from the literature: prehospital care, decision-making, hemorrhage control, and mortality in NCAH. During the stakeholders' consultation, the results of the deductive and inductive thematic analyses were reviewed and agreed on by the stakeholders. Special emphasis and discussion were given to prehospital management, expert opinions in the prehospital environment, decision-making in the prehospital environment, transport and resuscitation in the prehospital setting, REBOA, alternative discussion for research, and research gaps. Conclusion: NCAH is still a significant cause of preventable death in both military and civilian austere environments, even with ongoing research and interventions aimed at extending survival in such conditions. This scoping review has identified several potential concepts that could reduce the mortality associated with a preventable cause of death due to hemorrhage in austere environments.

Evaluating the implementation of personalised outcomes forecasts to optimise supervised exercise therapy in patients with intermittent claudication in the Netherlands: a multimethods study.

BACKGROUND: To support the optimisation of supervised exercise therapy (SET) in patients with intermittent claudication, we developed personalised outcomes forecasts (POFs), which visualise estimated walking distance and quality of life for individual patients. The POFs may enable healthcare professionals, such as physical and exercise therapists, to improve shared decision-making and patient outcomes. OBJECTIVES: To assess differences in patient outcomes (functional walking distance, maximal walking distance and health-related quality of life) and the level of shared decision-making before and after the implementation of POFs in the conservative treatment of patients with intermittent claudication. METHODS: An interrupted time series design was used to compare preimplementation and postimplementation differences on patient outcomes. Using routinely collected data, differences from baseline to 6 months were compared between patients before and patients after the implementation. To compare levels of shared decision-making, we conducted observations of initial consults within a sample of physical or exercise therapists both before and after the implementation. Audiorecords of observations were scored on shared decision-making using the OPTION-5 instrument. RESULTS: Differences in improvements between patients with whom POFs were discussed (n=317) and patients before the implementation of POFs (n=721) did not reach statistical significance for both functional walking distance (experimental vs. control=+23%, p=0.11) and maximal walking distance (experimental vs. control=+21%, p=0.08). For health-related quality of life, the POFs-informed patients showed a statistically significant greater improvement of 4% (p=0.04). Increased levels of shared decision-making were observed in postimplementation consults (n=20) when compared with preimplementation consults (n=36), as the median OPTION-5 total score showed a statistically significant increase from 45 to 55 points (p=0.01). CONCLUSIONS: Integrating POFs into daily practice of SET for patients with intermittent claudication could assist in improving health-related quality of life and enhancing patient involvement. Using POFs did not result in statistically significant different improvements between groups on walking distances. TRIAL REGISTRATION NUMBER: NL8838.

Best practice recommendations for speech-language pathology in children with neuromuscular disorders: A Delphi-based consensus study.

PURPOSE: Speech-language pathology (SLP) is considered an essential intervention due to the high prevalence of dysphagia and dysarthria in paediatric neuromuscular disorders (pNMD). Evidence-based guidelines for SLP in pNMD are missing and children could be deprived the best of care. This study aimed to achieve consensus and present best practice recommendations on SLP intervention in pNMD. METHOD: A modified Delphi technique was used with a panel of experienced Dutch speech-language pathologists. In two online survey rounds and a face-to-face consensus meeting, the SLP experts proposed intervention items for cases of four types of pNMD (congenital myopathy, Duchenne muscular dystrophy, myotonic dystrophy type 1, and spinal muscular atrophy type 2), covering symptoms of dysphagia, dysarthria, drooling, and oral hygiene problems. They rated the level of agreement. RESULT: Intervention items that achieved consensus were incorporated into best practice recommendations. These recommendations cover six core intervention components (wait and see, explanation and advice, training and treatment, aids and adjustments, referral to other disciplines, and monitoring) suitable for the described symptoms. CONCLUSION: Insight into treatment options is essential to facilitate speech-language pathologists in clinical decision-making. The current study led to best practice recommendations for speech-language pathologists working within the field of pNMD.

Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review.

INTRODUCTION: Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. METHODS: PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. RESULTS: We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. CONCLUSION: Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.