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1.
J Thorac Dis ; 16(6): 3844-3853, 2024 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-38983144

RESUMO

Background: Surgical resection is the primary treatment for early-stage lung cancer, but little is known about the outcomes that truly matter to patients. This aim of our study was to identify the aspects of postoperative outcomes that matter most to patients undergoing lung cancer surgery and explore the influence of clinical and demographic factors on their importance ratings. Methods: We performed a cross-sectional study of patients undergoing lung resection for non-small cell lung cancer at our institution from November 2021 to May 2022. Patients were surveyed using a self-developed questionnaire and the European Organisation for Research and Treatment of Cancer core health-related quality of life questionnaire (EORTC QLQ-C30) prior to surgery. Ordinal logistic regression was performed to determine associations between individual patient factors and outcome importance ratings. Results: Forty patients completed the survey during the study period. Patients prioritized oncologic outcomes, with 95% rating R0 resection and cancer recurrence as "very important". Other important factors included overall survival (90%), postoperative complications (e.g., myocardial infarction: 92.5%, infection: 87.5%), and the need for reoperation (82.5%). Health-related quality of life factors, such as chronic pain (77.5%) and the ability to return to normal physical and exercise levels (75%), were also highly valued. Certain patient clinical and demographic factors demonstrated significant associations with importance placed on certain outcomes. Preoperative health-related quality of life scores did not influence outcome importance ratings. Conclusions: This study provides insights into the outcomes that matter most to patients undergoing lung cancer surgery. Oncologic outcomes and postoperative complications were prioritized, while scar-related factors were less important. Patient preferences varied based on demographic and clinical factors. Understanding these preferences can enhance shared decision-making and improve patient-centered care in thoracic surgical oncology.

2.
Health Expect ; 27(4): e14143, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38992907

RESUMO

BACKGROUND: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. AIM: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. METHODS: We elicited patient perspectives by showing a provider-facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient-facing SDM tool. RESULTS: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient-facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient-provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. CONCLUSION: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. PATIENT OR PUBLIC CONTRIBUTION: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.


Assuntos
Tomada de Decisão Compartilhada , Detecção Precoce de Câncer , Grupos Focais , Neoplasias Pulmonares , Participação do Paciente , Pesquisa Qualitativa , Humanos , Neoplasias Pulmonares/diagnóstico , Detecção Precoce de Câncer/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso
3.
Health Psychol Behav Med ; 12(1): 2371134, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38979393

RESUMO

Background: Differences of Sex Development (DSD) are congenital conditions where the chromosomal, gonadal and anatomical sex characteristics do not strictly belong to male or female categories, or that belong to both at the same time. Surgical interventions for individuals with DSD remain controversial, among affected individuals, caregivers, and health-care providers. A lack of evidence in support of, for deferring, or for avoiding surgery complicates the decision-making process. This study explores Norwegian health-care professionals' (HCPs) perspectives on decision-making in DSD-related surgeries and the dilemmas they are facing in this process. Methods: Focus group interviews with 14 HCPs integrated into or collaborating with multidisciplinary DSD teams were analyzed using reflexive thematic analysis. Results: Two overarching dilemmas shed light on the intricate considerations and challenges that HCPs encounter when guiding affected individuals and caregivers through surgical decision-making processes in the context of DSD. The first theme describes how shared decision-making was found to be influenced by fear of stigma and balancing the interplay between concepts of normality, personal experiences and external expectations when navigating the child's and caregivers' needs. The second theme illuminated dilemmas due to a lack of evidence-based practice. The core concepts within each theme were the dilemmas health-care professionals face during consultations with caregivers and affected individuals. Conclusion: HCPs were aware of the controversies with DSD-related surgeries. However, they struggled to reconcile knowledge with parents' wishes for surgery and faced dilemmas making decisions in the best interests of the child. This study draws attention to the benefits of increased knowledge on the consequences of performing or withholding surgery as well as incorporating tools enabling shared decision-making between HCPs and affected individuals/caregivers.


DSD-related surgeries are controversial and subject to debate.Health-care professionals grapple with dilemmas during shared decision-making, as revealed in focus group interviews.Health-care professionals were concerned that parents' and affected individuals' fear of stigmatization would influence the shared decision-making process. Lack of evidence-based knowledge on practice, left health care professionals without clear guidelines on how to navigate decision-making.

4.
J Formos Med Assoc ; 2024 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-38977388

RESUMO

PURPOSE: In the health-care system within hospitals, Taiwanese patients usually play the role of passively cooperating with health-care professionals. Therefore, patients rarely make their own treatment decisions. This study evaluated the level of patient education and patient satisfaction in relation to empowerment level in Taiwan. METHODS: A cross-sectional survey by a self-administered structured questionnaire was carried out with 618 inpatients from the four hospitals. Statistical analyses were then conducted. Analysis of covariance and post-hoc comparison was used to compare differences between the level of patient empowerment, age, and education as covariates in the model. RESULTS: This study found that 21.2% and 35.6% of participants were highly empowered and well empowered, respectively. Years of education is a significant covariate in the counselling domain of patient education. Even after controlling for age and education level, the counselling, answer question and justifying action, providing information scores remain significant for all levels after adjusting for the effects of degree of patient empowerment. Patients with higher empowerment also having more-sufficient patient education, indicating a tendency toward higher patient satisfaction. Patient education and counselling practices in Taiwan's clinical practice could be improved to enhance patient empowerment and ensure health-care systems are person-centred. CONCLUSIONS: To move more toward highly patient empowerment, we suggest that health-care professionals advocate a patient-empowerment approach and to provide more counselling related to patients' illnesses and possible treatments.

6.
J Law Med ; 31(2): 324-342, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38963248

RESUMO

Before providing any form of medical treatment, medical practitioners are generally required to discharge their duty to warn. It is argued in this article that the duty to warn, at least as it relates to frail and elderly patients, requires the principles of shared decision-making to be adopted. Doing so will ensure a comprehensive biopsychosocial understanding of the patient and assist in identifying material risks that may not be readily apparent. Such risks include risks that threaten the patient's values, preferences, treatment aims and long-term outcomes. Once such risks are identified, in discharging the duty to warn, they should be contextualised in a manner that makes clear how that risk will manifest in that particular patient. These risks should then also be synthesised within the context of their other medical issues and longer-term interests. Finally, it is suggested that the traditional consent process may need restructuring.


Assuntos
Responsabilidade pela Informação , Consentimento Livre e Esclarecido , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Responsabilidade pela Informação/legislação & jurisprudência , Idoso , Austrália , Tomada de Decisão Compartilhada
7.
BJOG ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965793

RESUMO

BACKGROUND: Approximately 50% women who give birth after obstetric anal sphincter injury (OASI) develop anal incontinence (AI) over their lifetime. OBJECTIVE: To evaluate current evidence for a protective benefit of planned caesarean section (CS) to prevent AI after OASI. SEARCH STRATEGY: MEDLINE/PubMed, Embase 1974-2024, CINAHL and Cochrane to 7 February 2024 (PROSPERO CRD42022372442). SELECTION CRITERIA: All studies reporting outcomes after OASI and a subsequent birth, by any mode. DATA COLLECTION AND ANALYSIS: Eighty-six of 2646 screened studies met inclusion criteria, with nine studies suitable to meta-analyse the primary outcome of 'adjusted AI' after OASI and subsequent birth. Subgroups: short-term AI, long-term AI, AI in asymptomatic women. SECONDARY OUTCOMES: total AI, quality of life, satisfaction/regret, solid/liquid/flatal incontinence, faecal urgency, AI in women with and without subsequent birth, change in AI pre- to post- subsequent birth. MAIN RESULTS: There was no evidence of a difference in adjusted AI after subsequent vaginal birth compared with CS after OASI across all time periods (OR = 0.92, 95% CI 0.72-1.20; 9 studies, 2104 participants, I2 = 0% p = 0.58), for subgroup analyses or secondary outcomes. There was no evidence of a difference in AI in women with or without subsequent birth (OR = 1.00 95% CI 0.65-1.54; 10 studies, 970 participants, I2 = 35% p = 0.99), or pre- to post- subsequent birth (OR = 0.79 95% CI 0.51-1.25; 13 studies, 5496 participants, I2 = 73% p = 0.31). CONCLUSIONS: Due to low evidence quality, we are unable to determine whether planned caesarean is protective against AI after OASI. Higher quality evidence is required to guide personalised decision-making for asymptomatic women and to determine the effect of subsequent birth mode on long-term AI outcomes.

8.
PEC Innov ; 4: 100300, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38974934

RESUMO

Objective: To improve sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer, we evaluated real-world experiences and identified ways to optimize decision aid content and future implementation. Methods: Semi-structured interviews with patients and medical oncologists addressed two main subjects: user experience and decision aid content. Content analysis was applied. Fifteen experts discussed the results and devised improvements based on experience and literature review. Results: Thirteen users were interviewed. They confirmed the relevance of the decision aid for shared decision making. Areas for improvement of content concerned; 1) outdated and missing information, 2) an imbalance in presentation of treatment benefits and harms, and 3) medical oncologists' expressed preference for a more center-specific or patient individualized decision aid, presenting a selection of the guideline recommended treatment options. Key points for improvement of implementation were better alignment within the care pathway, and clear instruction to users. Conclusion: We identified relevant opportunities for improvement of an existing decision aid and developed an updated version and accompanying implementation strategy accordingly. Innovation: This paper outlines an approach for continued decision aid and implementation strategy development which will add to sustainability. Implementation success of the improved decision aid is currently being studied in a multi-center mixed-methods implementation study.

9.
J Am Heart Assoc ; : e032568, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38989822

RESUMO

BACKGROUND: Shared decision-making (SDM) has the potential to improve hypertension care quality and equity. However, research lacks diverse representation and evidence about how race and ethnicity affect SDM. Therefore, this study aims to explore SDM in the context of hypertension management. METHODS AND RESULTS: Explanatory sequential mixed-methods design was used. Quantitative data were sourced at baseline and 12-month follow up from RICH LIFE (Reducing Inequities in Care of Hypertension: Lifestyle Improvement for Everyone) participants (n=1212) with hypertension. Qualitative data were collected from semistructured individual interviews, at 12-month follow-up, with participants (n=36) selected based on their SDM scores and blood pressure outcome. Patients were cross- categorized based on high or low SDM scores and systolic blood pressure reduction of ≥10 or <10 mm Hg. Multinomial logistic regression analysis showed that predictors of SDM scores and blood pressure outcome were race and ethnicity (relative risk ratio [RRR], 1.64; P=0.029), age (RRR, 1.03; P=0.002), educational level (RRR, 1.87; P=0.016), patient activation (RRR, 0.98; P<0.001; RRR, 0.99; P=0.039), and hypertension knowledge (RRR, 2.2; P<0.001; and RRR, 1.57; P=0.045). Qualitative and mixed-methods findings highlight that provider-patient communication and relationship influenced SDM, being emphasized both as facilitators and barriers. Other facilitators were patients' understanding of hypertension; clinicians' interest in the patient, and clinicians' personality and attitudes; and barriers included perceived lack of compassion, relationship hierarchy, and time constraints. CONCLUSIONS: Participants with different SDM scores and blood pressure outcomes varied in determinants of decision and descriptions of contextual factors influencing SDM. Results provide actionable information, are novel, and expand our understanding of factors influencing SDM in hypertension.

10.
Front Transplant ; 3: 1421154, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38993756

RESUMO

For some patients who have lost the lower part of an arm, hand transplant offers the possibility of receiving a new limb with varying degrees of sensation and function. This procedure, Vascularized Composite Allotransplantation (VCA), is demanding for patients and their care community and comes with significant risks. As a high-stakes decision, patients interested in VCA are subject to extensive clinical evaluation and eligibility decision making. Patients and their care community must also decide if hand transplant (versus other approaches including rehabilitative therapies with or without prosthesis) is right for them. This decision making is often confusing and practically and emotionally fraught. It is complicated in four ways: by the numerous beneficial and harmful potential effects of hand transplant or other options, the number of people affected by VCA and the diverse or conflicting positions that they may hold, the practical demands and limitations of the patient's life situation, and the existential significance of limb loss and transplant for the patient's being. Patients need support in working through these treatment determining issues. Evaluation does not provide this support. Shared decision making (SDM) is a method of care that helps patients think, talk, and feel their way through to the right course of action for them. However, traditional models of SDM that focus on weighing possible beneficial and harmful effects of treatments are ill-equipped to tackle the heterogeneous issues of VCA. A recent model, Purposeful SDM extends the range of troubling issues that SDM can help support beyond opposing effects, to include conflicting positions, life situations, and existential being. In this paper we explore the pertinence of these issues in VCA, methods of SDM that each require of clinicians, the benefits of supporting patients with the breadth of issues in their unique problematic situations, implications for outcomes and practice, and extend the theory of the Purposeful SDM model itself based on the issues present in hand transplant decision making.

11.
BMC Cancer ; 24(1): 831, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38992616

RESUMO

BACKGROUND: Listening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery. METHODS: Two online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals. RESULTS: Twenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely 'mild to moderate side effects' (13.4%), 'long-term risks' (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization. CONCLUSION: Treatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes.


Assuntos
Leucemia Linfocítica Crônica de Células B , Preferência do Paciente , Humanos , Leucemia Linfocítica Crônica de Células B/terapia , Leucemia Linfocítica Crônica de Células B/psicologia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Austrália , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Adulto , Objetivos
12.
Patient Prefer Adherence ; 18: 1311-1321, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38947871

RESUMO

Purpose: To explore 1) the level of shared decision-making (SDM) participation in intraocular lens (IOL) selection in cataract patients and the factors that influence this participation and 2) the relationships between preparation for decision-making (PrepDM)and the level of SDM participation and satisfaction with the decision (SWD). Provide guidance for improving SDM in ophthalmology. Patients and Methods: 176 cataract patients were asked to complete the PrepDM scale, the 9-item Shared Decision Making Questionnaire (SDM-Q-9) and the SWD instrument in IOL decision-making process. Multiple linear regression was used to analyze the influencing factors of the level of SDM. The Process program and bootstrap sampling method was used to test whether the level of participation in SDM was a mediating variable among the three. Results: The SDM-Q-9 median score was 77.78 (IQR 31.11-88.89). Patients with a history of surgery in the operative eye (P=0.022) or PrepDM <60 points (P<0.001) had lower SDM-Q-9 scores than patients with no history of surgery in the operative eye or PrepDM ≥60 points. Patients with an education level lower than primary school had lower SDM-Q-9 scores than patients with other education levels (P<0.05). The PrepDM of cataract patients was positively correlated with the level of SDM (r=0.768, P<0.001) and with the SWD (r=0.727, P<0.001), and the level of SDM was positively correlated with the SWD (r=0.856, P<0.001). The level of SDM fully mediated PrepDM and SDW, with a mediating effect value of 0.128 and a mediating effect of 86.66% of the total effect. Conclusion: The SDM of cataract patients involved in IOL selection was in the upper middle range. Education, history of surgery in the operated eye, and PrepDM were factors that influenced the level of SDM. The level of participation in SDM fully mediated the relationship between PrepDM and SWD.

13.
Int Ophthalmol ; 44(1): 298, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951286

RESUMO

BACKGROUND: Despite cataract surgery being a safe procedure with a low incidence of perioperative complications rates, poor knowledge, concerns about the effectiveness of treatment and cost-benefit analysis of the procedure significantly hinder cataract surgery uptake rates in Africa. This study describes the effect of a decision aid on knowledge and decision conflict on cataract patients in Africa. METHODS AND ANALYSIS: 120 patients with cataracts reporting to a tertiary hospital in Ghana were randomly assigned to receive a decision aid containing information on the possible outcomes of cataract surgery or a control booklet containing general knowledge about cataracts without information about cataract surgery. The primary outcome measured was the effect of the decision aid on their knowledge of cataract surgery. A score greater than 6/12 (50%) was deemed adequate knowledge. The secondary outcome was the decision conflict experienced by the participants assessed using the Decision Conflict Scale. RESULTS: Compared to the control group, the participants in the intervention group scored higher marks across all sections of the questionnaire (2.92 vs 2.7, p = 0.042 in section "Background"; 2.62 vs 1.77, p < 0.001 in section "Materials"; 1.87 vs 1.55, p = 0.03 in section "Results"). The average total score was higher in the intervention group than in the control (36.7% difference; p < 0.001). Participants in the intervention group also demonstrated lower decision conflict scores than those in the control group (13.00 vs 37.17; p < 0.001). CONCLUSION: The decision aid increased knowledge of cataract surgery and reduced decision conflict among patients in a developing country.


Assuntos
Extração de Catarata , Técnicas de Apoio para a Decisão , Países em Desenvolvimento , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Extração de Catarata/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Gana/epidemiologia , Catarata , Inquéritos e Questionários , Pesquisa Qualitativa , Adulto , Tomada de Decisões , Educação de Pacientes como Assunto/métodos
14.
Andrology ; 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38973317

RESUMO

The promising results achieved in male hormonal contraceptive trials over the last decades suggest that new male contraceptives could hit the market soon. In shared decision-making counseling, couples and their healthcare provider collaborate to make decisions about contraception choices. This model of contraceptive counseling could aid men in taking responsibility for contraception and women in trusting their partners in family planning. The shared decision-making process in contraceptive counseling requires partners to provide input on their preferences, values, and desires, while healthcare professionals share medical knowledge and evidence-based information.It has been proven that this method leads to higher adherence and satisfaction. To ensure that contraceptive counseling is inclusive, fair, and supportive of different reproductive experiences and needs, it is crucial to incorporate the Reproductive Justice Framework into counseling.

15.
Breast ; 77: 103764, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38970983

RESUMO

BACKGROUND: Ductal carcinoma in situ (DCIS) can progress to invasive breast cancer (IBC), but often never will. As we cannot predict accurately which DCIS-lesions will or will not progress to IBC, almost all women with DCIS undergo breast-conserving surgery supplemented with radiotherapy, or even mastectomy. In some countries, endocrine treatment is prescribed as well. This implies many women with non-progressive DCIS undergo overtreatment. To reduce this, the LORD patient preference trial (LORD-PPT) tests whether mammographic active surveillance (AS) is safe by giving women with low-risk DCIS a choice between treatment and AS. For this, sufficient knowledge about DCIS is crucial. Therefore, we assessed women's DCIS knowledge in association with socio-demographic and clinical characteristics. METHODS: LORD-PPT participants (N = 376) completed a questionnaire assessing socio-demographic and clinical characteristics, risk perception, treatment choice and DCIS knowledge after being informed about their diagnosis and treatment options. RESULTS: 66 % of participants had poor knowledge (i.e., answered ≤3 out of 7 knowledge items correctly). Most incorrect answers involved overestimating the safety of AS and misunderstanding of DCIS prognostic risks. Overall, women with higher DCIS knowledge score perceived their risk of developing IBC as being somewhat higher than women with poorer knowledge (p = 0.049). Women with better DCIS knowledge more often chose surgery whilst most women with poorer knowledge chose active surveillance (p = 0.049). DISCUSSION: Our findings show that there is room for improvement of information provision to patients. Decision support tools for patients and clinicians could help to stimulate effective shared decision-making about DCIS management.

16.
Hematology ; 29(1): 2375177, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38975804

RESUMO

ABSTRACTImmune thrombocytopenia (ITP), an autoimmune disease characterized by low platelet counts and increased bleeding risk, can impair health-related quality of life (HRQoL), impacting patients' daily lives and mental health. A number of patient-reported outcome (PRO) measures (both generic and specific to ITP) can be used to understand the impact of ITP on HRQoL and generate evidence to guide disease management. As well-developed PRO tools could help in HRQoL assessment, their optimization could help to solidify a patient-centric approach to ITP management. Shared decision-making is a collaborative process between a patient and their healthcare professional in making decisions about care. Treatment decisions based on this shared process between physician and patient are recommended by clinical guidelines. The goal of this narrative review is to discuss treatment decisions with regards to patient-centric ITP management, with a focus on the impact of PRO measures and the process of shared decision-making in practice.


Assuntos
Tomada de Decisão Compartilhada , Assistência Centrada no Paciente , Púrpura Trombocitopênica Idiopática , Qualidade de Vida , Humanos , Púrpura Trombocitopênica Idiopática/terapia , Púrpura Trombocitopênica Idiopática/psicologia
17.
Artigo em Inglês | MEDLINE | ID: mdl-38906215

RESUMO

OBJECTIVES: Despite increased access to contraceptive methods (CM), the US still has the highest rate of adolescent pregnancy among industrialized nations, and adolescents from historically marginalized groups are disproportionately affected. In this study, we sought to (1) understand if differences in CM usage were associated with differential percentages of new pregnancies among adolescents and young adult patients attending a family planning (FP) clinic at an urban community practice and (2) identify areas of improvement in our FP counseling. METHODS: Mixed-methods study design consisting of (1) a 12-month retrospective chart review and (2) a self-answered cross-sectional survey of FP patients. Chi-square, Fisher's exact tests, and risk ratio were performed to analyze the percentage of new pregnancies according to CM usage. RESULTS: The percentage of new pregnancies was 11 among our FP patients (N=555) during this study period. As anticipated, pregnancy was associated with no CM use, CM discontinuation, and, interestingly, multiple CM changes (p<0.001). The probability of no-pregnancy significantly decreased among patients on no method, who discontinued their CM or made multiple CM changes compared to those with continuous CM use. There was no association between the percentage of new pregnancies and any particular CM type. CONCLUSION: Despite adequate access to FP patient services and high patient satisfaction levels, our findings indicate a need to adopt a more patient-centered approach in our FP counseling that addresses patient's reproductive life plans, preferences, and method side effects to increase CM uptake and satisfaction and decrease frequency of CM changes which is associated with increased risk of mistimed pregnancy during method switching.

18.
Urol Pract ; 11(4): 717-725, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38899681

RESUMO

INTRODUCTION: Patient preference assessment is key to high-quality decision-making in men with prostate cancer. We aimed to determine if "phenotypes" could be identified among men with prostate cancer, with each phenotype representing a cohort with a distinct combination of preferences. We wished to learn if there was an association between phenotype and treatment selection. METHODS: A prospective cohort of men with prostate cancer received a pre-visit decision aid. This software used conjoint analysis to quantify relative patient preferences for treatment-associated survival, quality of life outcomes, and recovery time. We collected patient clinical data, physician recommendation for active treatment or surveillance, and treatments received. Preferences were analyzed using latent class analysis to identify distinct classes of preference phenotypes. We compared patient characteristics and treatment choice across phenotypes, both univariately and in a multivariable logistic regression. RESULTS: In 250 men who used the decision aid as part of routine care, latent class analysis revealed 3 phenotypic classes. Men in Class 1 had the highest concerns around recovery time and the lowest value on improving lifespan. Men in Class 2 had relatively evenly distributed concerns. Men in Class 3 had the lowest concerns around recovery time and risk of surgical complications. On multivariate analysis, treatment choice was not associated with preference-based phenotype. Only physician recommendation was associated with choice of active treatment. CONCLUSIONS: We identified the existence of 3 patient preference-based phenotypes in men with prostate cancer. Each phenotype had a unique combination of trade-offs when considering competing treatment outcomes. These phenotypes were not associated with treatment. Physician recommendation was the only factor determining treatment choice.


Assuntos
Preferência do Paciente , Fenótipo , Neoplasias da Próstata , Masculino , Humanos , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/terapia , Neoplasias da Próstata/patologia , Idoso , Estudos Prospectivos , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Técnicas de Apoio para a Decisão
19.
BMC Nurs ; 23(1): 401, 2024 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-38886702

RESUMO

BACKGROUND: Nursing care for older women represent a challenge worldwide due to its characteristics. When communication is impaired between primary care nurses and older women living alone, an imbalance in power relations occurs. The main objective of this study is to analyse the power relations between older women and primary care nurses in situations of active listening, shared decision-making and participation in care. METHODS: We developed a qualitative study in southern Spain using a discursive and gender approach. We used purposeful sampling to interview older women who lived alone and received home nursing care. Simultaneously, we conducted focus groups with primary care nurses who provided home care to older women. A linguistic analysis of the transcripts was carried out. RESULTS: Nine semi-structured face-to-face interviews were conducted with older women who lived alone and two face-to-face focus groups with four primary care nurses in each. The discourse of the participants demonstrated an imbalance in power relations. Influenced by work overload, active listening was considered a privilege in primary care nurses´ discourse. Regarding shared decision-making, older women´s discourses revealed "mirages" of real situations where they thought they were deciding. Participation in care was difficult since older women saw themselves as a nuisance in nurses´ presence, and primary care nurses did not facilitate older women's engagement. Older women weren´t considered when organising home visits and had interiorised a subordinated feeling. Similarly, a strict sense of identity made primary care nurses feel powerful in their relationships with older women. CONCLUSIONS: The discourse of older women represented them as victims of a hostile panorama whilst they were sometimes satisfied with the deficient care received. The discourse of primary care nurses used more discursive strategies to represent themselves as professionals committed to caring. However, it also revealed deficiencies in care, discriminatory elements, and feelings of being limited by their working conditions. Active listening to older women and engagement in decision-making readjust empower the older women. Attending to the needs and concerns of primary care nurses could recalibrate the power imbalance between them and healthcare organisations.

20.
BMC Med ; 22(1): 248, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38886762

RESUMO

BACKGROUND: Most women use medication during pregnancy. Pregnancy-induced changes in physiology may require antenatal dose alterations. Yet, evidence-based doses in pregnancy are missing. Given historically limited data, pharmacokinetic models may inform pregnancy-adjusted doses. However, implementing model-informed doses in clinical practice requires support from relevant stakeholders. PURPOSE: To explore the perceived barriers and facilitators for model-informed antenatal doses among healthcare practitioners (HCPs) and pregnant women. METHODS: Online focus groups and interviews were held among healthcare practitioners (HCPs) and pregnant women from eight countries across Europe, Africa and Asia. Purposive sampling was used to identify pregnant women plus HCPs across various specialties prescribing or providing advice on medication to pregnant women. Perceived barriers and facilitators for implementing model-informed doses in pregnancy were identified and categorised using a hybrid thematic analysis. RESULTS: Fifty HCPs and 11 pregnant women participated in 12 focus groups and 16 interviews between January 2022 and March 2023. HCPs worked in the Netherlands (n = 32), the UK (n = 7), South Africa (n = 5), Uganda (n = 4), Kenya, Cameroon, India and Vietnam (n = 1 each). All pregnant women resided in the Netherlands. Barriers and facilitators identified by HCPs spanned 14 categories across four domains whereas pregnant women described barriers and facilitators spanning nine categories within the same domains. Most participants found current antenatal dosing information inadequate and regarded model-informed doses in pregnancy as a valuable and for some, much-needed addition to antenatal care. Although willingness-to-follow model-informed antenatal doses was high across both groups, several barriers for implementation were identified. HCPs underlined the need for transparent model validation and endorsement of the methodology by recognised institutions. Foetal safety was deemed a critical knowledge gap by both groups. HCPs' information needs and preferred features for model-informed doses in pregnancy varied. Several pregnant women expressed a desire to access information and partake in decisions on antenatal dosing. CONCLUSIONS: Given the perceived limitations of current pharmacotherapy for pregnant women and foetuses, model-informed dosing in pregnancy was seen as a promising means to enhance antenatal care by pregnant women and healthcare practitioners.


Assuntos
Grupos Focais , Pessoal de Saúde , Gestantes , Pesquisa Qualitativa , Humanos , Feminino , Gravidez , Adulto , Cuidado Pré-Natal , África , Ásia , Europa (Continente) , Uganda
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