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1.
J Am Med Dir Assoc ; 25(11): 105234, 2024 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-39222661

RESUMEN

In decision making for cancer treatment, information is crucial for patients and health care professionals. Although conversations about treatment decisions take place in hospitals, many patients also appreciate the insights of their general practitioner (GP). GPs indicated that, in order to have meaningful conversations about treatment decisions with their patients, they need additional information about treatment options and considerations, such as expected benefits and side effects. In this practice innovation, we developed and implemented a new written communication format from medical specialists to GPs, aimed at providing accurate treatment information to facilitate GPs in supporting patients with cancer in decision-making. The new format added 3 specific headings to standard letters in the electronic patient files (EPFs): (1) treatment options, (2) treatment considerations, and (3) treatment intent. This innovation was implemented in a large university hospital in the Netherlands between 2020 and 2021. We performed a process evaluation of the implementation using the RE-AIM model, based on assessment of written communication obtained from patients' EPFs, and telephonic interviews with specialists and GPs. In the Netherlands, all inhabitants are registered with a GP, who acts as a gatekeeper to specialist care, and has a comprehensive overview of a patient's history, based on digital communication with hospitals after referral for specialist care. EPFs are used to generate digital letters to communicate between medical specialists in a hospital and GPs outside the hospital. Incorporating new headings in the communication format in the EPF successfully encouraged medical specialists to share such information when used appropriately. Treatment options, considerations, and treatment intent were stated more often in the new format compared with the old format. GPs appreciated the new format, highlighting the value of including treatment considerations, which enhanced their comprehension of the medical specialist's thought processes. Recognition of the problem and motivation for improvement facilitated the implementation. Specialists stated the format to be time-efficient compared with the old format; however, technical improvements could make it easier to use. Automaticity to use of the old format, inadequate information, and technical issues were a barrier for implementation. In summary, a straightforward innovation can improve communication between medical specialists and GPs and promote the role of the GPs in decision making for cancer treatment.

2.
Cureus ; 16(8): e66825, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39280530

RESUMEN

Background Breast-conserving surgery (BCS) can make breast cancer treatment less disfiguring and more aesthetically acceptable for women. However, very few patients in India chose to undergo BCS surgery despite eligibility. Therefore, this study aims to explore the factors influencing the surgical choice in the treatment of breast cancer in India. Materials and methods This prospective study was conducted at a tertiary care hospital in Central India. Women having stage I/ II breast cancer diagnosis with a tumor size <5 cm were considered. A detailed self-designed questionnaire was used. A chi-square test with a significance level (p-value <0.05) was applied. Results Out of 40 females, 80% (n = 32) chose modified radical mastectomy (MRM), whereas 20% (n = 8) opted for BCS. The primary motivations to undergo MRM included concern about cancer recurrence (30%, n = 12), desire to avoid the adverse effects of radiation therapy (25%, n = 10), and fear of radiation therapy (20%, n = 8). Surgeons play a dominant role in determining surgical options, with 80% of MRM cases following the surgeon's recommendation. A significant association was observed between surgical options, education, economic status, locality, and family history (p<0.001). Changes in decision-making regarding the type of surgery after admission to the hospital were significant (p<0.001) after counseling. Conclusions The choice between breast conservation and mastectomy is influenced by sociodemographic factors, personal views, and surgeons' recommendations. Thus, these factors must be considered in preoperative counseling to help patients make informed choices.

3.
J Surg Res ; 303: 32-39, 2024 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-39288517

RESUMEN

INTRODUCTION: Intraductal papillary mucinous neoplasms (IPMNs) are pancreatic premalignant lesions frequently detected incidentally. Choosing between surgery and surveillance for IPMNs is rooted in uncertainty. We characterized patient preferences in IPMN management, and examined associations with patients' uncertainty profiles (risk perception, risk attitude, and uncertainty tolerance). METHODS: We conducted a cross-sectional survey drawn from a national opt-in panel. We simulated an encounter following an incidental computed tomography scan finding of an IPMN with a 5% cancer risk. We elicited participants' preferred treatment (surgery versus surveillance). Participant cancer risk perception, risk attitude (risk seeking versus risk averse), and uncertainty tolerance (comfort with the unknown) were determined using validated measures. Multivariate regression models assessed for independent predictors of treatment preference and risk perception. RESULTS: The sample included 520 participants, ages 40-70, racially representative of the US population. Participants preferred surveillance (n = 331, 64%) over surgery (n = 189, 36%). Patients were significantly more likely to prefer surgery as their cancer risk perception increased (absolute difference = 12% from 1.0 standard deviation below to 1.0 standard deviation above the mean, 95% CI 3.5-20.2). Treatment preference was not significantly associated with risk attitude (P = 0.068) or uncertainty tolerance (P = 0.755). However, initial cancer risk perception was significantly associated with both uncertainty tolerance (P = 0.013) and baseline cancer anxiety (risk perception 16.4% versus 65%, not worried at all versus extremely worried, P < 0.001). CONCLUSIONS: Patient preference varies widely for IPMN and is significantly associated with cancer risk perception, which is, in turn, significantly associated with uncertainty tolerance and cancer anxiety. These findings argue for the preference-sensitive nature of IPMN treatment decisions.

4.
Patient Educ Couns ; 130: 108418, 2024 Sep 11.
Artículo en Inglés | MEDLINE | ID: mdl-39288559

RESUMEN

OBJECTIVE: To assess stakeholders' perspectives on integrating personalized risk scores (PRS) into left ventricular assist device (LVAD) implantation decisions and how these perspectives might impact shared decision making (SDM). METHODS: We conducted 40 in-depth interviews with physicians, nurse coordinators, patients, and caregivers about integrating PRS into LVAD implantation decisions. A codebook was developed to identify thematic patterns, and quotations were consolidated for analysis. We used Thematic Content Analysis in MAXQDA software to identify themes by abstracting relevant quotes. RESULTS: Clinicians had varying preferences regarding PRS integration into LVAD decision making, while patients and caregivers preferred real-time discussions about PRS with their physicians. Physicians voiced concerns about time constraints and suggested delegating PRS discussions to advanced practice providers or nurse coordinators. CONCLUSIONS: Integrating PRS information into LVAD decision aids presents both opportunities and challenges for SDM. Given variable preferences among clinicians and patients, clinicians should elicit patients' desired role in the decision-making process. Addressing time constraints and ensuring patient-centered care will be crucial for optimizing SDM. Practice implications Clinicians should elicit patient preferences for PRS information disclosure and address challenges, such as time constraints and delegation of PRS discussions to other team members.

5.
Healthcare (Basel) ; 12(17)2024 Aug 27.
Artículo en Inglés | MEDLINE | ID: mdl-39273733

RESUMEN

Shared decision-making (SDM) is an essential component of patient-centered healthcare and disease management. However, the association of SDM with healthcare resource utilization and patient-reported outcomes among multimorbid individuals is not well understood. This study sought to evaluate the association of SDM with healthcare resource utilization and patient-reported outcomes among United States (US) adults with multimorbidity. Data were collected from the 2020 Medical Expenditure Panel Survey (MEPS) for this cross-sectional study. Eligible participants were US adults with two or more comorbidities. The predictor variable was SDM (optimal versus not optimal). The outcome variables were healthcare resource utilization and patient-reported outcomes. Logistic regression models, adjusted for demographic characteristics, assessed associations with SDM for each healthcare resource utilization and patient-reported outcome variable. The analysis maintained the complex survey data and was weighted to produce nationally representative estimates. Individuals who reported optimal SDM in adjusted analyses utilized more healthcare resources compared to those who reported not optimal SDM. Individuals with optimal SDM had more than one outpatient visit (odds ratio OR = 1.23, 95% CI = 1.03-1.47), emergency room visit (OR = 1.55, 95% CI = 1.17-2.06), and inpatient discharge (OR = 1.44, 95% CI = 1.05-1.96). Additionally, these individuals had higher odds of reporting limitations in their ability to work or engage in other activities due to their physical health in the past four weeks (OR = 1.27, 95% CI = 1.01-1.60). This study indicated evidence of increased healthcare resource utilization among patients who participate in SDM with their providers, which should be explored in future studies.

7.
Chron Respir Dis ; 21: 14799731241238428, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39254860

RESUMEN

OBJECTIVES: Shared Decision Making (SDM) has potential to support Pulmonary Rehabilitation (PR) decision-making when patients are offered a menu of centre- and home-based options. This study sought to evaluate the feasibility and acceptability of a three-component PR SDM intervention for individuals with Chronic Obstructive Pulmonary Disease (COPD) and PR healthcare professionals. METHODS: Participants were recruited from Dec 2021-Sep 2022. Healthcare professionals attended decision coaching training and used the consultation prompt during consultations. Individuals received the Patient Decision Aid (PtDA) at PR referral. Outcomes included recruitment capability, data completeness, intervention fidelity, and acceptability. Questionnaires assessed patient activation and decisional conflict pre and post-PR. Consultations were assessed using Observer OPTION-5. Optional interviews/focus groups were conducted. RESULTS: 13% of individuals [n = 31, 32% female, mean (SD) age 71.19 (7.50), median (IQR) MRC dyspnoea 3.50 (1.75)] and 100 % of healthcare professionals (n = 9, 78% female) were recruited. 28 (90.32%) of individuals completed all questionnaires. SDM was present in all consultations [standardised scores were mean (SD) = 36.97 (21.40)]. Six healthcare professionals and five individuals were interviewed. All felt consultations using the PtDA minimised healthcare professionals' bias of centre-based PR, increased individuals' self-awareness of their health, prompted consideration of how to improve it, and increased involvement in decision-making. DISCUSSION: Results indicate the study processes and SDM intervention is feasible and acceptable and can be delivered with fidelity when integrated into the PR pathway.


Asunto(s)
Toma de Decisiones Conjunta , Estudios de Factibilidad , Participación del Paciente , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Enfermedad Pulmonar Obstructiva Crónica/rehabilitación , Enfermedad Pulmonar Obstructiva Crónica/psicología , Femenino , Masculino , Anciano , Participación del Paciente/métodos , Persona de Mediana Edad , Técnicas de Apoyo para la Decisión , Encuestas y Cuestionarios , Grupos Focales
8.
World Psychiatry ; 23(3): 364-386, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39279422

RESUMEN

Psychiatry shares most ethical issues with other branches of medicine, but also faces special challenges. The Code of Ethics of the World Psychiatric Association offers guidance, but many mental health care professionals are unaware of it and the principles it supports. Furthermore, following codes of ethics is not always sufficient to address ethical dilemmas arising from possible clashes among their principles, and from continuing changes in knowledge, culture, attitudes, and socio-economic context. In this paper, we identify topics that pose difficult ethical challenges in contemporary psychiatry; that may have a significant impact on clinical practice, education and research activities; and that may require revision of the profession's codes of ethics. These include: the relationships between human rights and mental health care, research and training; human rights and mental health legislation; digital psychiatry; early intervention in psychiatry; end-of-life decisions by people with mental health conditions; conflicts of interests in clinical practice, training and research; and the role of people with lived experience and family/informal supporters in shaping the agenda of mental health care, policy, research and training. For each topic, we highlight the ethical concerns, suggest strategies to address them, call attention to the risks that these strategies entail, and highlight the gaps to be narrowed by further research. We conclude that, in order to effectively address current ethical challenges in psychiatry, we need to rethink policies, services, training, attitudes, research methods and codes of ethics, with the concurrent input of a range of stakeholders, open minded discussions, new models of care, and an adequate organizational capacity to roll-out the implementation across routine clinical care contexts, training and research.

9.
JSES Int ; 8(5): 926-931, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39280156

RESUMEN

Background: To determine differences in functional outcomes, return to work, and complications, in operatively vs. nonoperatively treated diaphyseal humeral shaft fractures. Methods: 150 patients who presented to our center with a diaphyseal humeral shaft fracture (Orthopedic Trauma Association type 12) treated by open reduction internal fixation or closed reduction with bracing were retrospectively reviewed. Data collected included patient demographics, injury information, surgical details, and employment data. Clinical, radiographic, and patient-reported functional outcomes were recorded at routine standard-of-care follow-ups. Complications were recorded. Outcomes were analyzed using standard statistical methods and compared. Results: 150 patients with a mean 24.4 months of follow-up (12 to 60 months) were included for analysis. 83 (55.3%) patients were treated with nonoperative care in a functional brace. The rest were treated surgically. The mean time to healing did not differ between the cohorts (P > .05). Patients treated operatively recovered faster with regards to functional elbow range of motion by 6 weeks (P = .039), were more likely to be back at work by 8 weeks after injury (P = .001), and demonstrated earlier mean time to return-to-daily activities (P = .005). Incidence of nonunion was higher in the nonoperative cohort (10.84% vs. 0%, P = .031). Three (4.5%) patients in the operative group developed iatrogenic, postoperative nerve palsy. Two patients in the operative group (4%) had a superficial surgical site infection. Conclusion: More patients treated surgically had functional range of motion by 6 weeks. Functional gains should be weighed by the patient and surgeon against risk of surgery, nonunion, nerve injury, and infection when considering various treatment options to better accommodate patients' needs.

10.
Res Sq ; 2024 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-39257975

RESUMEN

Background: There is a lack of evidence on the importance of pain or other aspects of clinical care in the overall patient experience and patient-centered outcomes in cesarean delivery. The purpose of this study was to discover patient priorities in cesarean delivery anesthesia experience, to compare patient and provider perspectives, and to explore attitudes on shared decision-making around anesthesia choices for cesarean delivery. Methods: Patients with recent cesarean deliveries and clinical care providers were approached using a purposeful sampling strategy for this prospective observational qualitative study. Patients were included if they were in the hospital within 72 hours of a cesarean delivery (scheduled or unscheduled), spoke English fluently, and had term gestation. Providers were included if they currently provide regular clinical care to patients having cesarean deliveries and have at least 3 years of practice experience. Semi-structured interviews were conducted using an interview guide. Interview transcripts were independently coded by three coders and qualitatively analyzed for major themes until thematic saturation was achieved. Results: A total of 42 participants (20 patients and 22 providers) completed interviews. Five major themes emerged reflecting patient attitudes and beliefs toward cesarean delivery experience: 1) effective communication, education, and respect; 2) emotional support by care team; 3) intraoperative pain or discomfort; 4) varying acceptability around pain therapies; 5) stigma surrounding cesarean delivery. Five major themes emerged reflecting provider attitudes and beliefs toward cesarean delivery priorities: 1) complexity of pain responses; 2) multiple pain control strategies; 3) effective communication during emergency cesarean delivery; 4) patient psychological well-being during cesarean delivery; 5) barriers to observing the patients' birth plans. Conclusions: Patients and providers alike prioritize pain management, psychological well-being, and effective communication during cesarean delivery experiences. Patients emphasize relationships and trust in their cesarean experience, while clinicians emphasize clinical complexities and physical treatments. Our results guide future research in patient perspectives in cesarean deliveries.

11.
Front Public Health ; 12: 1452440, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39267640

RESUMEN

Background: The spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data. Methods: This perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain. Results: The proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients' answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants' PROMs data are fed back into the PDA, thus "closing the circle" between the decision-making process and patient-reported data collection.During the first 14 months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (n = 6) was 36.15 of 45 points. Conclusion: Various obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.


Asunto(s)
Toma de Decisiones Conjunta , Participación del Paciente , Medición de Resultados Informados por el Paciente , Humanos , España , Femenino , Masculino , Persona de Mediana Edad
12.
Implement Sci Commun ; 5(1): 97, 2024 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-39267183

RESUMEN

BACKGROUND: Hip fracture surgery under general or spinal anesthesia is a common procedure for older adults in the United States (US). Although spinal or general anesthesia can be appropriate for many patients, and the choice between anesthesia types is preference-sensitive, shared decision-making is not consistently used by anesthesiologists counseling patients on anesthesia for this procedure. We designed an Option Grid™-style conversation aid, My Anesthesia Choice─Hip Fracture, to promote shared decision making in this interaction. This study will refine the aid and evaluate its implementation and effectiveness in clinical practice. METHODS: The study will be conducted over 2 phases: qualitative interviews with relevant clinicians and patients to refine the aid, followed by a stepped wedge cluster randomized trial of the intervention at 6 settings in the US. Primary outcomes will include the percentage of eligible patients who receive the intervention (intervention reach) and the change in quality of patient/clinician communication (intervention effectiveness). Secondary outcomes addressing other RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) domains will also be collected. Outcomes will be compared between baseline data and an active implementation period and then compared between the active implementation period and a sustainment period. Implementation strategies are guided by three constructs from the Practical, Robust Implementation and Sustainability Model (PRISM): intervention, recipients, and implementation and sustainability infrastructure. DISCUSSION: This is a novel, large-scale trial evaluating and implementing a shared decision-making conversation aid for anesthesia choices. Strong buy-in from site leads and expert advisors will support both the success of implementation and the future dissemination of results and the intervention. Results from this study will inform the broader implementation of this aid for patients with hip fractures and can lead to the development and implementation of similar conversation aids for other anesthesia choices. TRIAL REGISTRATION: ClinicalTrials.gov, NCT06438640.

13.
Isr J Health Policy Res ; 13(1): 45, 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39256820

RESUMEN

BACKGROUND: The term end-stage renal disease (ESRD) refers to the final stage of chronic kidney disease. Not all ESRD patients are suitable for dialysis treatment, which despite its advantages, is not without risks. Shared nephrologist-patient decision-making could be beneficial at this stage, yet little is known about such practices in Israel. This study aimed at examining the practice of shared decision-making (SDM) between nephrologists and ESRD patients in Israel, while exploring related conflicts, ethical dilemmas, and considerations. METHODS: The descriptive-quantitative approach applied in this study included a validated questionnaire for nephrologists, based on Emanual and Emanual (1992). The survey, which was distributed via social-media platforms and snowball sampling, was completed by 169 nephrologists. Data analysis included t-tests for independent samples, f-tests for analysis of variance, and t-tests and f-tests for independence. Descriptive analysis examined attitudes towards SDM in end-of-life care for ESRD patients. RESULTS: The findings show that the research sample did not include nephrologists who typically act according to the paternalistic decision-making style. Rather, 53% of the respondents were found to act in line with the informative decision-making style, while 47% act according to the interpretive decision-making style. Almost 70% of all respondents reported their discussing quality-of-life with patients; 63.4% provide prognostic assessments; 61.5% inquire about the patient's desired place of death; 58.6% ask about advance directives or power-of-attorney; and 57.4% inquire about cultural and religious beliefs in end-of-life treatment. Additionally, informative nephrologists tend to promote the patients' autonomy over their health (P < 0.001); they are also in favor of conservative treatment, compared to paternalistic and interpretive nephrologists, and use less invasive methods than other nephrologists (P = 0.02). CONCLUSIONS: Nephrologists in Israel only partially pursue an SDM model, which has the potential to improve quality-of-care for ESRD patients and their families. SDM programs should be developed and implemented for increasing such practices among nephrologists, thereby expanding the possibilities for providing conservative care at end-of-life.


Asunto(s)
Toma de Decisiones Conjunta , Fallo Renal Crónico , Nefrólogos , Cuidado Terminal , Humanos , Fallo Renal Crónico/terapia , Fallo Renal Crónico/psicología , Cuidado Terminal/métodos , Cuidado Terminal/psicología , Masculino , Femenino , Encuestas y Cuestionarios , Israel , Nefrólogos/psicología , Persona de Mediana Edad , Adulto , Actitud del Personal de Salud , Toma de Decisiones
14.
J Food Allergy ; 6(1): 26-31, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39257603

RESUMEN

Anaphylaxis is a systemic allergic reaction that may be severe and life-threatening. With more than a dozen anaphylaxis definitions proposed over the past several decades and several diagnostic criteria in circulation, there is a need for a multinational consensus definition to simplify management across specialties. Anaphylaxis diagnostic criteria are more alike than they are different, and approaches of the National Institute of Allergy and Infectious Disease, World Allergy Organization, and Brighton Collaborative help to add granularity and perspective to patient management. Anaphylaxis occurs across a spectrum of severity within populations, although, among individual patients, there is some evidence to suggest more consistency for an individual allergen. Still, severity is influenced by a number of factors that demonstrate variability: factors that relate to allergen triggers, patient characteristics, and treatments received. Severity of anaphylaxis impacts management, and recent guidelines provide approaches that consider individual factors to inform both strong and conditional recommendations. Conditional recommendations serve as navigational signals for shared decision-making when patient expertise is leveraged to inform individual preferences and values together with clinician expertise in anaphylaxis management to provide patient care bespoke to each patient. As novel approaches to both prevention and treatment of anaphylaxis emerge, an understanding of the significance of strong and conditional recommendations becomes critical to providing individualized and appropriate care for patients at risk for anaphylaxis.

15.
JMIR Hum Factors ; 11: e55852, 2024 Sep 03.
Artículo en Inglés | MEDLINE | ID: mdl-39226546

RESUMEN

BACKGROUND: Stroke may lead to various disabilities, and a structured follow-up visit is strongly recommended within a few months after an event. To facilitate this visit, the digital previsit tool "Strokehealth" was developed for patients to fill out in advance. The concept Strokehälsa (or Strokehealth) was initially developed in-house as a Windows application, later incorporated in 1177.se. OBJECTIVE: The study's primary objective was to use a patient satisfaction survey to evaluate the digital previsit tool Strokehealth when used before a follow-up visit, with a focus on feasibility and relevance from the perspective of people with stroke. Our secondary objective was to explore the extent to which the previsit tool identified stroke-related health problems. METHODS: Between November 2020 and June 2021, a web-based survey was sent to patients who were scheduled for a follow-up visit after discharge from a stroke unit and had recently filled in the previsit tool. The survey covered demographic characteristics, internet habits, and satisfaction rated using 5 response options. Descriptive statistics were used to present data from both the previsit tool and the survey. We also compared the characteristics of those who completed the previsit tool and those who did not, using nonparametric statistics. Free-text responses were thematically analyzed. RESULTS: All patients filling out the previsit tool (80/171; age: median 67, range 32-91 years) were community-dwelling. Most had experienced a mild stroke and reported a median of 2 stroke-related health problems (range 0-8), and they were significantly younger than nonresponders (P<.001). The survey evaluating the previsit tool was completed by 73% (58/80; 39 men). The majority (48/58, 83%) reported using the internet daily. Most respondents (56/58, 97%) were either satisfied (n=15) or very satisfied (n=41) with how well the previsit tool captured their health problems. The highest level of dissatisfaction was related to the response options in Strokehealth (n=5). Based on the free-text answers to the survey, we developed 4 themes. First, Strokehealth was perceived to provide a structure that ensured that issues would be emphasized and considered. Second, user-friendliness and accessibility were viewed as acceptable, although respondents suggested improvements. Third, participants raised awareness about being approached digitally for communication and highlighted the importance of how to be approached. Fourth, their experiences with Strokehealth were influenced by their perceptions of the explanatory texts, the response options, and the possibility of elaborating on their answers in free text. CONCLUSIONS: People with stroke considered the freely available previsit tool Strokehealth feasible for preparing in advance for a follow-up visit. Despite high satisfaction with how well the tool captured their health problems, participants indicated that additional free-text responses and revised information could enhance usability. Improvements need to be considered in parallel with qualitative data to ensure that the tool meets patient needs. TRIAL REGISTRATION: Researchweb 275135; https://www.researchweb.org/is/vgr/project/275135.


Asunto(s)
Satisfacción del Paciente , Accidente Cerebrovascular , Humanos , Masculino , Femenino , Persona de Mediana Edad , Encuestas y Cuestionarios , Anciano , Adulto , Anciano de 80 o más Años
16.
Int J Nurs Stud Adv ; 7: 100231, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-39221228

RESUMEN

Background: Kidney failure is associated with a high disease burden and high mortality rates. National and international guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but implementation of these conversations within kidney services varies. We developed the DESIRE (ShareD dEciSIon-making for patients with kidney failuRE to improve end-of-life care) intervention from our studies investigating multiple decision maker needs and experiences of end-of-life care in kidney services. The DESIRE intervention's three components are a training programme for health professionals, a patient decision aid, and a kidney service consultation held to facilitate shared decision-making conversations about planning end-of-life care. Objectives: To assess the feasibility and acceptability of integrating the DESIRE intervention within kidney services. Design: A pilot study using a multicentre randomised controlled design. Setting: Four Danish nephrology departments. Participants: Patients with kidney failure who were 75 years of age or above, their relatives, and health professionals. Methods: Patients were randomised to either the intervention or usual care. Feasibility data regarding delivering the intervention, the trial design, and outcome measures were collected through questionnaires and audio recordings at four points in time: before, during, post, and 3 months after the intervention. Acceptability data were collected through semi-structured interviews with patients and relatives, as well as a focus group with health professionals post the intervention. Results: Twenty-seven patients out of the 32 planned were randomised either to the intervention (n= 14) or usual care (n= 13). In addition, four relatives and 12 health professionals participated. Follow-up was completed by 81 % (n= 22) of patient participants. We found that both feasibility and acceptability data suggested health professionals improved their decision support and shared decision-making skills via the training. Patient and relative participants experienced the intervention as supporting a shared decision-making process; from audio recordings, we showed health professionals were able to support proactively decision-making about end-of-life care within these consultations. All stakeholders perceived the intervention to be effective in promoting shared decision-making and relevant for supporting end-of-life care planning. Conclusions: Participant feedback indicated that the DESIRE intervention can be integrated into practice to support patients, relatives, and health professionals in planning end-of-life care alongside the management of worsening kidney failure. Minimising exhaustion and enhancing engagement with the intervention should be a focus for subsequent refinement of the intervention. Registration: The study has been registered at ClinicalTrials.gov with the identifier: NCT05842772. Date of first recruitment: March 20, 2023.

17.
Cureus ; 16(8): e66007, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39221336

RESUMEN

Transparency in healthcare organizations is essential for creating a culture of patient-centered care where patients are respected, informed, and actively engaged in their health and well-being. Organizational transparency is a crucial element in healthcare, enhancing patient safety and quality improvement. Transparency involves open communication about healthcare organizations' performance, outcomes, and processes, leading to improved accountability, trust, and patient engagement. Transparent organizations prioritize patient-centered care, involving patients in decision-making and fostering shared mental models between healthcare providers and patients. Psychological safety is vital for organizational transparency. Patient safety reporting systems play a key role in transparency, allowing anonymous reporting of safety concerns and incidents. These systems facilitate early risk identification, continuous improvement, and compliance with regulatory requirements. Transparency in reporting encourages a culture of openness, learning from near misses, and addressing systemic issues and human errors. It aligns with ethical principles, potentially mitigating legal challenges. This review synthesizes key themes, including the importance of patient-centered care, the role of psychological safety in fostering transparency, and the effectiveness of patient safety reporting systems.

18.
Scand J Caring Sci ; 2024 Sep 03.
Artículo en Inglés | MEDLINE | ID: mdl-39223999

RESUMEN

BACKGROUND: The incidence of chronic disease is increasing worldwide which, in turn, increases the demand for healthcare services. To meet these demands, healthcare systems are adapting their services in order to reduce treatment costs and ensure coherence for patients with multiple diseases. One form of adaptation is shared outpatient consultations between internal medical specialties. However, little is known about how patients interact with multiple clinicians in shared consultations. AIM: This project aimed to explore how patients with diabetes and chronic kidney disease interact with multiple clinicians in a shared outpatient setting. RESEARCH METHODS: We performed a qualitative ethnographic study, combining focused participant observations with informal field interviews. We included 17 participants, nine males and eight females with a mean age of 67.3 in the project. The data analysis was guided by Braun and Clarke's reflexive thematic analysis and Arthur Kleinman's theory of illness and disease. RESULTS: We found one over-arching theme: 'A consultation which encompassed both illness and disease' and four subthemes: (1) 'The medical focal point' pertained to the focus on physiological measurements in dialogue between patients and clinicians. (2) 'The possibility of negotiations' illustrated how decisions about dialysis and pharmacological treatment were based on negotiations. (3) 'Speaking different languages' displayed how patients used alternative illness-based explanations whereas clinicians tended to use biomedical language. (4) 'Perceptions of everyday life' concerned what patients considered was best for them when managing their illness and everyday lives. CONCLUSION: Patients present information on how they balance life with physiological and psychosocial challenges. When clinicians employ a biomedical perspective, opportunities to gain information on patients' illness behaviours or cues to negotiate are missed. Patients prioritise functioning on a daily level over following treatment regimes. These findings are tenuous and require verification in similar studies in similar settings. SHORT PHRASES: Shared Outpatient Clinic, Patient-clinician interactions.

19.
Neurourol Urodyn ; 2024 Sep 05.
Artículo en Inglés | MEDLINE | ID: mdl-39234766

RESUMEN

INTRODUCTION: Making a treatment decision for female stress urinary incontinence (SUI) can be challenging for patients and healthcare providers. Dutch guidelines advise to counsel both pelvic floor muscle therapy and midurethral sling surgery as primary treatment options in uncomplicated moderate to severe cases. The use of a patient decision aid (PDA) can support decision-making, reduce decisional conflict and decisional regret, and increase knowledge. The aim of this study was to develop and evaluate an online PDA for females (SUI). METHODS: This mixed-methods study was performed in consecutive stages by a multidisciplinary working group. PDA design was based on the International Patient Decision Aids Standards (IPDAS) and on outcomes of needs assessments amongst patients and healthcare providers. Content was based on Dutch guidelines, targeted literature searches and patient information from the Dutch scientific society for gynecology. The concept version was evaluated by patients, patients' advocates, and healthcare providers. RESULTS: Using the nominal group technique, the working group established the design and format of the PDA. Fifty-six out of 58 applicable items of the IPDAS were met. The PDA contains information on the condition, advice on lifestyle adaptations, and describes surgical and nonsurgical treatment options. The option grid contains comparisons of the primary treatment options. Furthermore, value clarification exercises and narratives were included. Acceptability and usability evaluation of the concept version was performed by 15 healthcare providers, three patients, and two patients' advocates. Comments were processed in the working group, resulting in the final version of the PDA, which was supported by all assessors. CONCLUSION: Our multidisciplinary working group developed an online PDA for women with moderate to severe SUI including conservative and surgical treatment options, based on IPDAS criteria, guidelines, scientific evidence, and needs assessments from patients and healthcare providers. This PDA is supported by patients, healthcare providers, scientific societies, and the Dutch patients' association. The next step is to evaluate and implement this PDA in daily practice. TRIAL REGISTRATION: ID 2014-308.

20.
J Gen Intern Med ; 2024 Sep 04.
Artículo en Inglés | MEDLINE | ID: mdl-39230806

RESUMEN

BACKGROUND: Decision aids (DAs), compared to no DAs, help improve the key aspects of shared decision-making, including increased knowledge, discussion frequency, and reduction in decisional conflict. However, systematic reviews have reported varied conclusions on screening uptake, and which DAs are superior to alternative forms in shared decision-making for cancer screening has not been comprehensively reviewed. METHODS: An overview of systematic reviews was performed. Multiple databases were searched up to December 31, 2023, for systematic reviews of randomized controlled trials (RCTs) and non-randomized comparative studies (NRCSs) of any size that assessed a decision aid aimed to facilitate cancer-screening decision making communications. Dual screening of abstracts and full-text reports, dual data extraction and quality assessment, and qualitative synthesis were performed. RESULTS: The 22 eligible publications included 24 reviews on cancer screening DAs for a single specific cancer (8, 8, 7, and 1 on prostate, breast, colorectal, and lung cancer, respectively) and three reviews on multiple aggregate cancers. Individual reviews were based on different primary study designs (92 RCTs and 37 NRCSs); each study was infrequently cited (median citation count 2; range 1-9). Although the DAs had variable formats and delivery methods, the reviews generally focused on use and non-use comparisons. DAs decreased the intention or actual uptake for prostate and breast cancer screening, but increased it for colorectal cancer screening. DAs were associated with increased knowledge, well-informed choice, and reduced decisional conflict, regardless of cancer type. Only four reviews on comparative effectiveness between alternative formats of DAs (based on 14 RCTs and 2 NRCSs) failed to conclude on the specific format that was superior to others. DISCUSSION: DAs improve cancer screening shared decision-making by boosting cancer screening knowledge and informed choice and lowering decisional conflict and may facilitate preference-based, individualized screening participation. Comparative data on different cancer screening DAs are limited. SYSTEMATIC REVIEW REGISTRATION: PROSPERO, CRD42021235957.

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