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1.
Disabil Rehabil ; : 1-15, 2024 Sep 27.
Article in English | MEDLINE | ID: mdl-39334550

ABSTRACT

PURPOSE: This study aims to overcome the challenges experienced in the regional development and implementation of home-based stroke rehabilitation (HBSR) and to understand the change process needed. MATERIALS AND METHODS: Using participatory action research (PAR), participants and researchers collaboratively produced knowledge and took action to improve the offered HBSR. Different methods for data generation and analysis were used, depending on the aim of the PAR phase and the participants' stages of change. The Consolidated Framework for Implementation Research (CFIR) was used to select implementation strategies and to evaluate the implementation process. RESULTS: Developing and implementing HBSR resulted in multiple products that promoted the implementation of a regional stroke network and affiliated work arrangements. Work arrangements were embodied in a stroke care pathway, follow-up tool, and expertise requirements. Evaluating the PAR process identified participants being able to take the lead, being facilitated by others, and making progress visible, as implementation facilitators. Collaborating within a primary care project can be challenging but is considered essential and has a positive impact on multiple levels. Also, the implementation of HBSR calls for multiple implementation strategies reflecting multiple CFIR constructs. CONCLUSION: This study highlights the complexity and achievements of developing and implementing HBSR using PAR.


When developing home-based stroke rehabilitation, important topics concern: interprofessional collaboration, follow-up care, professional expertise, attention to the social network and "invisible consequences" of stroke, case management, and supporting self-management.When developing a regional stroke network, viewpoints and work arrangements should be documented, for example through a stroke care pathway, and a tool for follow-up care. This can overcome the challenges experienced regarding interprofessional collaboration while delivering home-based stroke rehabilitation.When implementing a complex intervention such as home-based stroke rehabilitation, participatory action research can be used to empower professionals and to facilitate the development of practical solutions to experienced implementation problems in the community.When developing home-based stroke rehabilitation and/or executing participatory action research, facilitation by a person with an overview of the project is important to guide the knowledge transformation process.

2.
Health Expect ; 27(1): e13945, 2024 02.
Article in English | MEDLINE | ID: mdl-39102682

ABSTRACT

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.


Subject(s)
Patient Participation , Humans , Netherlands , Surveys and Questionnaires , Interviews as Topic , Male , Female , Patient Care Team , Value-Based Health Care
3.
Ann Phys Rehabil Med ; 67(7): 101874, 2024 Aug 21.
Article in English | MEDLINE | ID: mdl-39173549

ABSTRACT

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).

4.
Disabil Rehabil ; : 1-13, 2024 Aug 24.
Article in English | MEDLINE | ID: mdl-39180336

ABSTRACT

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.

5.
Disabil Rehabil ; : 1-8, 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38967799

ABSTRACT

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.

6.
Health Expect ; 27(4): e14133, 2024 08.
Article in English | MEDLINE | ID: mdl-38988044

ABSTRACT

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.


Subject(s)
Cochlear Implants , Humans , Music , Program Development , Patient Participation , Hearing Loss/rehabilitation , Music Therapy , Program Evaluation
7.
J Occup Rehabil ; 2024 Jul 25.
Article in English | MEDLINE | ID: mdl-39052178

ABSTRACT

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.

8.
Acta Orthop ; 95: 298-306, 2024 06 17.
Article in English | MEDLINE | ID: mdl-38888063

ABSTRACT

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.


Subject(s)
Radiography , Scoliosis , Adolescent , Child , Female , Humans , Male , Follow-Up Studies , Radiography/economics , Scoliosis/diagnostic imaging , Randomized Controlled Trials as Topic
9.
Disabil Rehabil ; : 1-13, 2024 Apr 27.
Article in English | MEDLINE | ID: mdl-38676465

ABSTRACT

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.

10.
BMJ Open Qual ; 13(1)2024 03 01.
Article in English | MEDLINE | ID: mdl-38429061

ABSTRACT

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.


Subject(s)
Low Back Pain , Orthopedics , Physical Therapists , Humans , Neck Pain/therapy , Quality Improvement , Feedback , Low Back Pain/therapy , Outcome Assessment, Health Care
11.
BMC Musculoskelet Disord ; 25(1): 193, 2024 Mar 04.
Article in English | MEDLINE | ID: mdl-38439000

ABSTRACT

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.


Subject(s)
Low Back Pain , Adult , Humans , Low Back Pain/diagnosis , Leg , Prospective Studies , Linear Models , Netherlands/epidemiology
12.
BMJ Open Qual ; 13(1)2024 02 20.
Article in English | MEDLINE | ID: mdl-38378615

ABSTRACT

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.


Subject(s)
Intermittent Claudication , Quality of Life , Humans , Intermittent Claudication/therapy , Netherlands , Walking , Exercise Therapy/methods
13.
J Appl Gerontol ; 43(7): 881-898, 2024 07.
Article in English | MEDLINE | ID: mdl-38298083

ABSTRACT

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).


Subject(s)
Community Participation , Independent Living , Humans , Aged , Male , Female , Aged, 80 and over , Surveys and Questionnaires , Quality of Life , Aging , Interviews as Topic , Translational Research, Biomedical , Social Participation , Middle Aged , Health Services Accessibility
15.
Int J Speech Lang Pathol ; 26(1): 45-58, 2024 Feb.
Article in English | MEDLINE | ID: mdl-36896919

ABSTRACT

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.


Subject(s)
Deglutition Disorders , Speech-Language Pathology , Humans , Child , Dysarthria/therapy , Speech-Language Pathology/methods , Deglutition Disorders/etiology , Deglutition Disorders/therapy , Deglutition Disorders/diagnosis , Surveys and Questionnaires , Speech Therapy/methods
16.
Health Policy ; 138: 104946, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38000333

ABSTRACT

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.


Subject(s)
Patient Participation , Quality of Health Care , Humans , Policy Making
17.
JMIR Public Health Surveill ; 9: e44155, 2023 Oct 20.
Article in English | MEDLINE | ID: mdl-37862083

ABSTRACT

BACKGROUND: Patients recovering from COVID-19 often experience persistent problems in their daily activities related to limitations in physical, nutritional, cognitive, and mental functioning. To date, it is unknown what treatment is needed to support patients in their recovery from COVID-19. OBJECTIVE: This study aimed to evaluate the primary allied health care of patients recovering from COVID-19 at 6-month follow-up and to explore which baseline characteristics are associated with changes in the scores of outcomes between baseline and 6-month follow-up. METHODS: This Dutch nationwide prospective cohort study evaluated the recovery of patients receiving primary allied health care (ie, dietitians, exercise therapists, occupational therapists, physical therapists, and speech and language therapists) after COVID-19. All treatments offered by primary allied health professionals in daily practice were part of usual care. Patient-reported outcome measures on participation, health-related quality of life, fatigue, physical functioning, and psychological well-being were assessed at baseline and at 3- and 6-month follow-up. Linear mixed model analyses were used to evaluate recovery over time, and uni- and multivariable linear regression analyses were used to examine the association between baseline characteristics and recovery. RESULTS: A total of 1451 adult patients recovering from COVID-19 and receiving treatment from 1 or more primary allied health professionals were included. For participation (Utrecht Scale for Evaluation of Rehabilitation-Participation range 0-100), estimated mean differences of at least 2.3 points were observed at all time points. For the health-related quality of life (EuroQol Visual Analog Scale, range 0-100), the mean increase was 12.3 (95% CI 11.1-13.6) points at 6 months. Significant improvements were found for fatigue (Fatigue Severity Scale, range 1-7): the mean decrease was -0.7 (95% CI -0.8 to -0.6) points at 6 months. However, severe fatigue was reported by 742/929 (79.9%) patients after 6 months. For physical functioning (Patient-Reported Outcomes Measurement Information System-Physical Function Short Form 10b, range 13.8-61.3), the mean increase was 5.9 (95% CI 5.9-6.4) points at 6 months. Mean differences of -0.8 (95% CI -1.0 to -0.5) points for anxiety (Hospital Anxiety and Depression Scale range 0-21) and -1.6 (95% CI -1.8 to -1.3) points for depression were found after 6 months. A worse baseline score, hospital admission, and male sex were associated with greater improvement between baseline and 6-month follow-up, whereas age, the BMI, comorbidities, and smoking status were not associated with mean changes in any outcome measures. CONCLUSIONS: Patients recovering from COVID-19 who receive primary allied health care make progress in recovery but still experience many limitations in their daily activities after 6 months. Our findings provide reference values to health care providers and health care policy makers regarding what to expect from the recovery of patients who receive health care from 1 or more primary allied health professionals. TRIAL REGISTRATION: ClinicalTrials.gov NCT04735744; https://tinyurl.com/3vf337pn. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2340/jrm.v54.2506.


Subject(s)
COVID-19 , Quality of Life , Adult , Humans , Male , Delivery of Health Care , Fatigue , Prospective Studies , Female
18.
BMC Public Health ; 23(1): 1765, 2023 09 11.
Article in English | MEDLINE | ID: mdl-37697261

ABSTRACT

BACKGROUND: People living with cardiovascular diseases (CVD) often experience work participation problems. Good work-focused healthcare, defined as the received advice, treatment, and guidance focusing on work participation, can support the patient and work place. However, experiences with work-focused healthcare are generally not always positive which is a barrier for work participation. Therefore, the objective of this study is to gain insight into the work-focused healthcare journey from the perspective of patients with work participation problems due to CVD, to understand their experiences and needs, and to derive opportunities for improving work-focused healthcare service at a system level. METHODS: Semi-structured interviews, preceded by preparatory assignments, were conducted with 17 patients who experience(d) work participation problems due to CVD. The patient experience journey map (PEJM) approach was used to visualize the patients' work-focused healthcare journey, including experiences and needs over time and place, from which opportunities to improve work-focused healthcare from the patient's perspective were derived. RESULTS: An aggregated PEJM consisting of six phases was composed and graphically mapped. The first phase, working, represents a period in which CVD health problems and subsequent functional limitations occur. The next two phases, short- and long-term sick leave, represent a period of full sick leave. The last three phases, start-, partial-, and full vocational reintegration, focus on the process of return to work that takes place ranging from a few months up to several years after sick-listing. For each phase the touchpoints, timespan, stakeholders, activities, experiences and needs from the perspective of the patients were identified. Finally, for better work-focused healthcare nine opportunities for improvement were derived from the PEJM, e.g. emphasize the need for work adjustment prior to the medical intervention, provide more personalized advice on handling work limitations, and putting more compelling pressure on the employer to create suitable work positions for their employees. DISCUSSION/CONCLUSION: This paper contributes insights to provide a more patient-centered work-focused healthcare trajectory for patients employed in paid jobs when living with CVD. The PEJM provides an understanding of the patients' perspectives throughout their work-focused healthcare journey and highlights opportunities for improvement towards a better suited and seamless patient journey, Although this research was conducted within the Dutch healthcare system, it can be assumed that the findings on integrated work-focused healthcare are largly transferable to other healthcare systems.


Subject(s)
Cardiovascular Diseases , Humans , Cardiovascular Diseases/therapy , Health Facilities , Ethnicity , Delivery of Health Care , Patient Outcome Assessment
19.
PLoS One ; 18(7): e0288511, 2023.
Article in English | MEDLINE | ID: mdl-37523366

ABSTRACT

INTRODUCTION: Shared decision-making is the cornerstone of patient-centered care. However, evidence suggests that the application of shared decision-making in physical therapy practice is limited. To elicit shared decision-making and thereby potentially improve patient outcomes for patients with intermittent claudication, we developed a decision support system. This decision support system provides personalized outcomes forecasts that visualize the estimated walking distance of an individual patient. We hypothesize that personalized outcomes forecasts can support physical therapists in personalizing care to the needs and priorities of the individual patient to improve therapy outcomes. RESEARCH OBJECTIVES: The primary aim is to evaluate the impact of personalized outcomes forecasts for patients with intermittent claudication to optimize personalized treatment. Second, this study aims to evaluate the process of implementation. METHODS: This study uses a prospective interrupted time series (ITS) design. Participating physical therapists are divided into four clusters. Every month of the study period, a new cluster will be invited to begin using the decision support system. We aim to include data of 11,250 newly referred patients for physical therapy treatment. All therapists associated with a network of specialized therapists (Chronic CareNet) and patients treated by these therapists are eligible to participate. The decision support system, called the KomPas, makes use of personalized outcomes forecasts, which visualize the estimated outcome of supervised exercise therapy for an individual patient with intermittent claudication. Personalized outcomes forecasts are developed using a neighbors-based approach that selects patients similar to the index patient (a.k.a. neighbors) from a large database. Outcomes to evaluate impact of implementation are patients' functional and maximal walking distance, quality of life and shared decision-making. Process evaluation will be measured in terms of utilization efficacy, including the outcomes dropout rate and reasons to (not) use the personalized outcomes forecasts. Data will be routinely collected through two online systems: the Chronic CareNet Quality system, and the website logs of the decision support system. Additionally, observations and semi-structured interviews will be conducted with a small subset of therapists. ETHICS: Formal medical ethical approval by the Medical Research Ethics Committees United 'MEC-U' was not required for this study under Dutch law (reference number 2020-6250).


Subject(s)
Intermittent Claudication , Physical Therapists , Humans , Intermittent Claudication/therapy , Prospective Studies , Quality of Life , Interrupted Time Series Analysis , Exercise Therapy/methods , Walking
20.
JSES Int ; 7(4): 592-600, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37426912

ABSTRACT

After resection of tumors in the proximal humerus, orthopedic oncologic surgeons are able to restore the shoulder function of patients with reverse shoulder megaprosthesis. Information about expected postoperative physical functioning is required to guide patient expectations, identify abnormal recovery, and set treatment goals. The aim was to provide an overview of functional outcomes after reverse shoulder megaprosthesis in patients after proximal humerus resection. This systematic review searched studies in MEDLINE, CINAHL, and Embase up to March 2022. Data on performance-based and patient-reported functional outcomes were extracted using standardized data extraction files. A meta-analysis with random effects model was performed to estimate outcomes after 2-year follow-up. The search identified 1089 studies. Nine studies were included in the qualitative analysis and six in the meta-analysis. Forward flexion range of motion (ROM) after 2 years was 105 degrees (95% Confidence Interval [CI]: 88-122, n = 59), abduction ROM 105 degrees (95% CI: 96-115, n = 29), and external rotation ROM 26 degrees (95% CI: 1-51, n = 48). The mean American Shoulder and Elbow Surgeons score after 2 years was 67 points (95% CI: 48-86, n = 42), mean Constant-Murley-Score 63 (95% CI: 62-64, n = 36), and mean Musculoskeletal Tumor Society score 78 (95% CI: 66-91, n = 56). The meta-analysis shows acceptable functional outcomes 2 years after reverse shoulder megaprosthesis. However, outcomes may well differ between patients as reflected by the CIs. Further research should focus on modifiable factors associated with impaired functional outcomes.

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