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2.
J Pain Symptom Manage ; 67(6): 544-553, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38479538

RESUMO

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Estudos Longitudinais , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Ordens quanto à Conduta (Ética Médica) , Preferência do Paciente , Doente Terminal , Cuidados Paliativos
3.
BMC Palliat Care ; 23(1): 77, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38509501

RESUMO

BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Idoso , Idoso de 80 Anos ou mais , Diretivas Antecipadas , Assistência Terminal/métodos , Preferência do Paciente , Vida Independente
4.
Arch Phys Med Rehabil ; 105(7): 1268-1274, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38369228

RESUMO

OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.


Assuntos
Ansiedade , Concussão Encefálica , Preferência do Paciente , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Adulto Jovem , Concussão Encefálica/psicologia , Concussão Encefálica/reabilitação , Concussão Encefálica/terapia , Preferência do Paciente/psicologia , Adolescente , Ansiedade/etiologia , Adaptação Psicológica , Entrevistas como Assunto , Educação de Pacientes como Assunto
5.
Rev Med Suisse ; 20(859): 259-261, 2024 Jan 31.
Artigo em Francês | MEDLINE | ID: mdl-38299958

RESUMO

To illustrate the news of 2023 in integrative medicine, the authors summarized four particularly relevant studies. The first highlights one of the foundational principles of integrative medicine, describing the importance of respecting patient preference in the choice of a therapeutic approach, promoting their «empowerment¼. The second article proposes methodological recommendations to improve the scientific value of studies assessing the efficacy and mechanisms of non-pharmacological approaches. Finally, the last two articles are randomized studies designed to either demonstrate the feasibility and effect of hypnosis in geriatrics, or evaluate the efficacy of a several combined complementary approaches for cancer-related fatigue.


Dans cette nouvelle édition consacrée aux nouveautés en médecine intégrative, les auteurs ont choisi de résumer quatre études particulièrement pertinentes parmi les articles publiés en 2023. La première souligne l'un des principes fondateurs de la médecine intégrative en décrivant l'importance du respect de la préférence du patient dans le choix d'une approche thérapeutique, favorisant leur « empowerment ¼. La deuxième propose des recommandations méthodologiques afin d'améliorer la valeur scientifique des études de l'efficacité et des mécanismes d'approches non pharmacologiques. Enfin, les deux dernières sont des études randomisées visant à démontrer, d'une part, la faisablité et l'effet de l'hypnose en gériatrie et, d'autre part, l'efficacité d'une combinaison d'approches complémentaires pour lutter contre la fatigue liée au cancer.


Assuntos
Geriatria , Hipnose , Medicina Integrativa , Humanos , Fadiga , Preferência do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto
6.
Neurourol Urodyn ; 43(4): 959-966, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38390786

RESUMO

INTRODUCTION: Third-line therapies for overactive bladder (OAB) that are currently recommended include intravesical Onabotulinumtoxin-A injections (BTX-A), percutaneous tibial nerve stimulation (PTNS), and sacral neuromodulation (SNM). The implantable tibial nerve stimulator (ITNS) is a novel therapy that is now available to patients with OAB. OBJECTIVE: The objective of this study was to analyze shifts in patient preference of third-line therapies for OAB after introducing ITNS as an option among the previously established therapies for non-neurogenic OAB. METHODS: A survey was designed and distributed via SurveyMonkey to the platform's audience of U.S. adults of age 18 and older. Screening questions were asked to include only subjects who reported symptoms of OAB. Descriptions of current AUA/SUFU guideline-approved third-line therapies (BTX-A, PTNS, and SNM) were provided, and participants were asked to rank these therapies in order of preference (stage A). Subsequently, ITNS was introduced with a description, and participants were then asked to rank their preferences amongst current guideline-approved therapies and ITNS (stage B). Absolute and relative changes in therapy preferences between stage A and stage B were calculated. Associations between ultimate therapy choice in stage B and participant characteristics were analyzed. RESULTS: A total of 485 participants completed the survey (62.5% female). The mean age was 49.1 ± 36.5 years (SD). The most common OAB symptoms reported were urgency urinary incontinence (UUI) (73.0%) and urinary urgency (68.0%). 29.2% of patients had tried medication for OAB in the past, and 8.0%-10.3% of patients were previously treated with a third-line therapy for OAB. In stage A, participants ranked their first choice of third-line therapy as follows: 28% BTX-A, 27% PTNS, and 13.8% SNM. 26.6% of participants chose no therapy, and 4.5% chose all three equally. In stage B, participants ranked their first choice as follows: 27.6% BTX-A, 19.2% PTNS, 7.8% SNM, and 19.2% ITNS. 21.9% of participants chose no therapy and 4.3% chose all four equally as their first choice. There were both absolute and relative declines in proportions of patients interested in BTX-A, SNM, and PTNS as their first choice of third-line therapy with the introduction of ITNS. Patients originally interested in PTNS in stage A had the greatest absolute change after the introduction of ITNS with 7.8% of participants opting for ITNS in stage B. Those interested in SNM in stage A had the largest relative change in interest, with 43.5% of those originally interested in SNM opting for ITNS in stage B. Finally, with the introduction of ITNS, the number of participants initially not interested in any third-line therapy declined by an absolute change of 4.7% and relative change of 17.6%. Participants experiencing concurrent stress urinary incontinence (SUI) symptoms were more likely to choose a current guideline-approved third-line therapy than ITNS or no therapy at all (p = 0.047). Those who had prior experience with third-line therapies were more likely to choose a third-line therapy other than ITNS as their ultimate choice of therapy in stage B. Of those who had chosen a guideline-approved third-line therapy in stage B (not ITNS), 13.6% had prior experience with BTX-A, 14.7% with PTNS, and 32 (11.2%) with SNM (p < 0.001, p < 0.001, p = 0.009, respectively). CONCLUSION: From our study, it appears that ITNS may attract a subset of patients who would not have otherwise pursued current guideline-approved third-line therapies for OAB. When patients are provided with descriptions of third-line OAB therapies including ITNS as an option, ITNS appears to compete with SNM and PTNS. It is possible that ITNS will provide patients with a different phenotype of neuromodulation therapy that can appeal to a niche OAB population. Given that ITNS devices have been introduced relatively recently to the market, their application will largely depend on cost and payer coverage, provider bias, and patient comorbidities. Further study is needed to understand how these factors interact with and influence patient preference of advanced OAB therapy to understand which patients will most benefit from this treatment modality.


Assuntos
Toxinas Botulínicas Tipo A , Terapia por Estimulação Elétrica , Estimulação Elétrica Nervosa Transcutânea , Bexiga Urinária Hiperativa , Adulto , Humanos , Feminino , Criança , Adolescente , Adulto Jovem , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Bexiga Urinária Hiperativa/terapia , Preferência do Paciente , Toxinas Botulínicas Tipo A/uso terapêutico , Nervo Tibial , Resultado do Tratamento
7.
J Relig Health ; 63(1): 238-256, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36807254

RESUMO

While there is high patient acceptance for clinical staff discussing issues regarding spirituality with hospital inpatients, it is not clear which staff member patients prefer for these discussions. This unique exploratory study investigated inpatient preferences regarding which staff member should raise the topic of spirituality. A cross-sectional survey was conducted with inpatients at six hospitals in Sydney, Australia (n = 897), with a subset invited to participate in qualitative interviews (n = 41). Pastoral care staff (32.9%) were the preferred staff members with whom to discuss spiritual issues, followed by doctors (22.4%). Qualitative findings indicated that individual characteristics of the staff member are more important than their role.


Assuntos
Preferência do Paciente , Espiritualidade , Humanos , Estudos Transversais , Austrália , Pacientes Internados , Hospitais
8.
Psychooncology ; 32(12): 1867-1875, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37905904

RESUMO

BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias , Assistência Terminal , Humanos , Motivação , Diretivas Antecipadas , Preferência do Paciente , Morte , Neoplasias/terapia
9.
J Cancer Res Clin Oncol ; 149(19): 17215-17222, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37792062

RESUMO

OBJECTIVE: Little is known about the quality of receiving bad news (BN) for women diagnosed with cervical neoplasia. We evaluated adherence to the SPIKES protocol in three cohorts of women with different stages of the disease and treatment modalities. PATIENTS AND METHODS: We included women with cervical cancer who underwent radical vaginal trachelectomy (RVT group, n = 110), radical hysterectomy or chemo-radiation (HE/RCT group, n = 101), and women with CIN 3 treated by loop excision (CIN group, n = 108). We asked the participants about how they received the bad news delivery in reality and how they would envision an ideal communication process based on the main items of the SPIKES protocol. The participants filled out a questionnaire with 38 items of the Marburg Breaking Bad News (MABBAN) Scale representing the six SPIKES subscales. RESULTS: Only 72% of all patients reported being satisfied with their BBN experience. The following factors were considered important by 90% of the patients: an undisturbed atmosphere, taking enough time, coherent explanation of the disease, and the possibility to ask questions. However, the reality of their experiences fell significantly short of their expectations. Asking about the patient's knowledge of the disease, addressing their concerns, allowing them to show emotions, providing clarity about the change in quality of life, informing them about alternative therapies, and involving them in further planning were also significantly lacking in the actual BBN encounters compared to the patients' preferences. The experience of RVT patients was more negative compared to the HE/RCT patients (p = 0.036). The CIN patients had an overall satisfactory impression (p < 0.0001). CONCLUSION: The process of breaking bad news in German women diagnosed with cervical neoplasia requires substantial improvement. The SPIKES protocol can be used as a guideline for enhancement but should be supplemented by incorporating a second consultation as the norm rather than the exception. Continuous monitoring and improvement of the quality of BBN is recommended for all oncologic institutions, utilizing the MABBAN questionnaire as a valuable tool.


Assuntos
Relações Médico-Paciente , Neoplasias do Colo do Útero , Humanos , Feminino , Neoplasias do Colo do Útero/terapia , Qualidade de Vida , Preferência do Paciente , Comunicação
10.
J Clin Hypertens (Greenwich) ; 25(12): 1151-1162, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37864810

RESUMO

Moxibustion has been shown to have a potential antihypertensive effect, but its applicability for the primary care of hypertension is unclear. The authors conducted a multicenter randomized controlled trial (RCT) with patient preference arms to investigate the effect, safety, cost-effectiveness, and compliance of moxibustion in community patients with hypertension. Patients with primary hypertension were enrolled from seven communities randomly or nonrandomly assigned to receive self-administered moxibustion + the original hypertensive regimen or the original hypertensive regimen alone for 6 months. The authors mainly evaluated the effects of moxibustion on hypertensive outcomes and adverse events. As a result, a total of 160 and 240 patients were recruited into the randomized and nonrandomized arms, respectively, with 87.5% completing the follow-up. At month 6, there was a significantly greater reduction in systolic blood pressure (SBP) (difference: -10.57 mmHg), a higher proportion of responders (82.2% vs. 53.7%; odds ratio 4.00), and better improvements in hypertensive symptoms and quality of life (QoL) in the moxibustion group than in the control group in the randomized population, but there was no significant between-group difference in diastolic blood pressure (DBP). The nonrandomized findings showed the same effect direction for all outcomes, except for DBP. All moxibustion-related adverse events were mild. In conclusion, moxibustion can reduce SBP and improve hypertensive symptoms and QoL in community patients with hypertension, with good safety and low cost, although its effect on DBP remains uncertain. The findings suggest that moxibustion may be an appropriate technique for community primary care of hypertension.


Assuntos
Hipertensão , Moxibustão , Humanos , Anti-Hipertensivos , Pressão Sanguínea , Hipertensão Essencial/tratamento farmacológico , Hipertensão/tratamento farmacológico , Moxibustão/efeitos adversos , Preferência do Paciente
11.
BMC Musculoskelet Disord ; 24(1): 528, 2023 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-37386480

RESUMO

BACKGROUND: Musculoskeletal pain is a major cause of physical disability, associated with huge socioeconomic burden. Patient preference for treatment is an important factor contributing to the choice of treatment strategies. However, effective measurements for evaluating the ongoing management of musculoskeletal pain are lacking. To help improve clinical decision making, it's important to estimate the current state of musculoskeletal pain management and analyze the contribution of patient treatment preference. METHODS: A nationally representative sample for the Chinese population was derived from the China Health and Retirement Longitudinal Study (CHARLS). Information on the patients' demographic characteristics, socioeconomic status, other health-related behavior, as well as history on musculoskeletal pain and treatment data were obtained. The data was used to estimate the status of musculoskeletal pain treatment in China in the year 2018. Univariate analysis and multivariate analysis were used to find the effect factors of treatment preference. XGBoost model and Shapley Additive exPlanations (SHAP) method were performed to analyze the contribution of each variable to different treatment preferences. RESULTS: Among 18,814 respondents, 10,346 respondents suffered from musculoskeletal pain. Approximately 50% of musculoskeletal pain patients preferred modern medicine, while about 20% chose traditional Chinese medicine and another 15% chose acupuncture or massage therapy. Differing preferences for musculoskeletal pain treatment was related to the respondents' gender, age, place of residence, education level, insurance status, and health-related behavior such as smoking and drinking. Compared with upper or lower limb pain, neck pain and lower back pain were more likely to make respondents choose massage therapy (P < 0.05). A greater number of pain sites was associated with an increasing preference for respondents to seek medical care for musculoskeletal pain (P < 0.05), while different pain sites did not affect treatment preference. CONCLUSION: Factors including gender, age, socioeconomic status, and health-related behavior may have potential effects on people' s choice of treatment for musculoskeletal pain. The information derived from this study may be useful for helping to inform clinical decisions for orthopedic surgeons when devising treatment strategies for musculoskeletal pain.


Assuntos
Dor Musculoesquelética , Manejo da Dor , Idoso , Humanos , Pessoa de Meia-Idade , China/epidemiologia , Estudos Longitudinais , Dor Musculoesquelética/diagnóstico , Dor Musculoesquelética/epidemiologia , Dor Musculoesquelética/etiologia , Dor Musculoesquelética/terapia , Manejo da Dor/métodos , Manejo da Dor/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos
12.
Ann Hematol ; 102(8): 2039-2049, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37227493

RESUMO

Iron chelation therapy (ICT) is the mainstay of treatment in patients with thalassemia requiring blood transfusions. This phase 2 JUPITER study evaluated patient preference between film-coated tablet (FCT) and dispersible tablet (DT) in transfusion-dependent thalassemia (TDT) or non-TDT (NTDT) patients treated with both formulations in a sequential manner. The primary endpoint was patient-reported preference for FCT over DT, while secondary outcomes included patient reported outcomes (PROs) evaluated by overall preference, and by age, thalassemia transfusion status, and previous ICT status. Out of 183 patients screened, 140 and 136 patients completed the treatment periods 1 and 2 of the core study, respectively. At week 48, the majority of patients preferred FCT over DT (90.3 vs. 7.5%; difference of percentage: 0.83 [95% confidence interval (CI), 0.75-0.89; P < 0.0001]). FCT scored better on secondary PROs and showed less severe gastrointestinal symptoms than DT, except in the change of modified Satisfaction with Iron Chelation Therapy (mSICT) preference scores, which were similar for both the formulations. Patients with TDT had stable ferritin levels, while it showed a downward trend up to week 48 in patients with NTDT on deferasirox treatment. Overall, 89.9% of patients reported ≥ 1 adverse event (AE), of which 20.3% experienced ≥ 1 serious AE. The most common treatment-emergent AEs were proteinuria, pyrexia, urine protein/creatinine ratio increase, diarrhea, upper respiratory tract infections, transaminase increase, and pharyngitis. Overall, this study reinforced the observations from the previous study by showing a distinct patient preference for FCT over DT formulation and further supported the potential benefits of life-long compliance with ICT.


Assuntos
Sobrecarga de Ferro , Talassemia , Humanos , Deferasirox , Sobrecarga de Ferro/complicações , Preferência do Paciente , Talassemia/tratamento farmacológico , Comprimidos , Ferro , Quelantes de Ferro/efeitos adversos , Benzoatos/efeitos adversos
13.
Adv Ther ; 40(2): 641-657, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36449257

RESUMO

INTRODUCTION: Information about patient preferences for the treatment of anaemia associated with chronic kidney disease (CKD) is scarce. Hence, our aim was to examine how patients with non-dialysis-dependent CKD valued attributes of alternative hypothetical anaemia treatments. METHODS: A discrete choice experiment (DCE) was conducted in adult patients who reported a clinical diagnosis of CKD-related anaemia. Treatment attributes included mode and frequency of administration, need for iron supplementation, risk of gastrointestinal side effects, risk of major cardiovascular events and impact on energy levels (as defined by the vitality section of the SF-6D health index). Logit models were used to analyse patients' preferences. RESULTS: The DCE was completed by 200 patients in four countries. Patients preferred an oral mode of administration. Patients were willing to tolerate a 5.1% (95% CI 2.0-8.3%) increase in the risk of a major cardiovascular event and an 11.7% (95% CI 5.0-18.5%) increase in the risk of gastrointestinal side effects to switch from an at-home subcutaneous injection administered once every 2 weeks to an at-home oral pill administered three times a week. Patients were willing to tolerate a 20.3% (95% CI 15.0-25.6%) increase in the risk of gastrointestinal side effects and an 8.9% (95% CI 6.1-11.7%) increase in the risk of a major cardiovascular event to transition from 'Sometimes having a lot of energy' to 'Always having a lot of energy'. CONCLUSIONS: Patients with non-dialysis-dependent CKD-related anaemia demonstrated clear treatment preferences and were willing to accept increased gastrointestinal or cardiovascular risks in exchange for more energy or an oral treatment.


Assuntos
Anemia , Doenças Cardiovasculares , Insuficiência Renal Crônica , Adulto , Humanos , Anemia/tratamento farmacológico , Anemia/etiologia , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/terapia , Ferro/uso terapêutico , Administração Oral , Preferência do Paciente , Doenças Cardiovasculares/tratamento farmacológico
14.
Neurourol Urodyn ; 42(2): 419-426, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36480150

RESUMO

INTRODUCTION: Overactive bladder (OAB) is often suboptimally addressed by behavioral or pharmacological treatments. Less than 15% of patients choose to pursue advanced OAB therapy (sacral nerve stimulation [SNS], percutaneous tibial nerve stimulation [PTNS], and bladder onabotulinum toxin type-A [BTX-A]). We seek to better understand which factors are most important to patients when choosing a third-line therapy. METHODS/MATERIALS: We developed a conjoint analysis survey that included five attributes of the third-line options for OAB (SNS, PTNS, and BTX-A). We administered the survey to new patients with urinary incontinence at two institutions. A hierarchical Bayes random effects regression analysis was used to determine the relative importance of the attributes. A choice simulator was used to model which third-line treatment options patients preferred. We followed patients to see if they pursued their predicted treatment. RESULTS: A total of 108 patients completed the study of whom 89% were women. There was representation from all age groups. The most important attributes of decision-making were the frequency of future procedures, the risk of catheterization, and the need for a device. On market simulation, SNS was the preferred treatment option (47%), followed by PTNS (29%) and BTX-A (14%). Only 10% of patients did not find any treatment option acceptable. CONCLUSIONS: Frequent follow-up, risk of catheterization, and the need for a device were the most important attributes when making a decision on third-line OAB therapy. On market simulation, SNS is the preferred treatment for all age groups though the ultimate choice in third-line therapy may be affected by external factors.


Assuntos
Terapia por Estimulação Elétrica , Estimulação Elétrica Nervosa Transcutânea , Bexiga Urinária Hiperativa , Humanos , Feminino , Masculino , Bexiga Urinária Hiperativa/tratamento farmacológico , Bexiga Urinária Hiperativa/etiologia , Preferência do Paciente , Teorema de Bayes , Terapia por Estimulação Elétrica/métodos , Nervo Tibial , Resultado do Tratamento
15.
J Relig Health ; 62(4): 2323-2340, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35918566

RESUMO

While patients value engagement concerning their spirituality as a part of holistic healthcare, there is little evidence regarding the preferred way to engage in discussions about spirituality. This study investigated inpatient preferences regarding how they would like spirituality to be raised in the hospital setting. A cross-sectional survey was conducted with inpatients at six hospitals in Sydney, Australia (n = 897), with a subset invited to participate in qualitative interviews (n = 41). There was high approval for all proposed spiritual history prompts (94.0-99.8%). In interviews, the context dictated the appropriateness of discussions. Findings indicated a high level of patient acceptability for discussing spirituality in healthcare. Further research and more detailed analysis is required and proposed to be undertaken.


Assuntos
Preferência do Paciente , Espiritualidade , Humanos , Estudos Transversais , Austrália , Pacientes Internados
16.
J Pain Symptom Manage ; 65(1): e63-e78, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36028176

RESUMO

CONTEXT: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. OBJECTIVE: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Preferência do Paciente , Comunicação , Tomada de Decisão Clínica
17.
Evid. actual. práct. ambul ; 26(3): e007088, 2023.
Artigo em Espanhol | LILACS, UNISALUD, BINACIS | ID: biblio-1515978

RESUMO

Si bien para los médicos la obesidad es una palabra técnica, para muchas personas tiene la implicaría de un largo sufrimiento en relación a su cuerpo. Históricamente, la medicina tradicional se ha comportado como una barrera en la atención a las personas con exceso de peso debido a la gordofobia y a una perspectiva reduccionista pesocentrista. Es preocupante que las ciencias y prácticas de la salud aún tengan esta mirada sobre la gordura, ya que supone un sesgo que impide que las personas sean atendidas integralmente, vulnerando sus derechos en nombre de una preocupación médica y anteponiendo el descenso de peso frente a otras necesidades de los pacientes. Este artículo, si bien intenta modestamente abrir una reflexión filosófica sobre el cuerpo, la medicina hegemónica y la enfermedad, también tiene como objetivo brindar herramientas técnicas y no técnicas para abordar la obesidad desde otro lugar. En esta primera entrega, desarrollaremos el abordaje integral de la persona con cuerpo gordo. La segunda entrega estará enfocada en los tratamientos farmacológicos, no farmacológicos y quirúrgicos de la obesidad. (AI)


Although obesity is a technical word for doctors, it implies long-term suffering in relation to their bodies for many people. Historically, traditional medicine has behaved as a barrier in caring for people with excess weight due to fatphobia and aweight-centric reductionist perspective. It is worrying that health sciences and practices still have this view of fatness, sinceit implies a bias that prevents people from being thoroughly cared for, violating their rights in the name of medical concernand putting weight loss before other patients' needs. This article modestly attempts to open a philosophical reflection about the body, hegemonic medicine, and disease, while also aiming to provide technical and non-technical tools to approach obesity. In this first part, we will explain the comprehensive approach to the person with a fat body. The second part will focus on pharmacological, non-pharmacological, and surgical treatments for obesity. (AU)


Assuntos
Humanos , Masculino , Feminino , Índice de Massa Corporal , Preconceito de Peso/psicologia , Obesidade/diagnóstico , Processo Saúde-Doença , Preferência do Paciente , Estigma Social , Preconceito de Peso/prevenção & controle , Obesidade/etiologia , Obesidade/fisiopatologia , Obesidade/epidemiologia
18.
Neurourol Urodyn ; 41(8): 1906-1913, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36104866

RESUMO

OBJECTIVE: Patients with overactive bladder (OAB) refractory to first- and second-line therapy may pursue third-line therapies, including intradetrusor onabotulinum toxin-A (BTX), peripheral tibial nerve stimulation (PTNS), and sacral neuromodulation (SNM). The factors that influence patient preference for each treatment modality have not yet been explored. This study sought to investigate the specific parameters that patients consider in choosing a third-line therapy for OAB. METHODS: Patients refractory to first- and second-line therapies for OAB were identified in our outpatient clinic and asked to watch an educational video providing information on the risks and benefits of each third-line treatment option. They were then given a questionnaire to rank their preference of therapy and select reasons for why they found each therapy favorable and unfavorable. Patients under age 18 years, non-English speakers, those with a developmental disability, and those with a diagnosis of neurogenic bladder were excluded. RESULTS: Of the 98 patients included in the study, 40 participants (40.8%) chose intradetrusor BTX injections, 34 (34.7%) chose PTNS, and 16 (16.3%) chose SNM as their first choice. Seven patients (7.1%) chose none of the offered therapies, and one patient (1.0%) chose all three therapies with equal preference. BTX was found most attractive for its long efficacy (47%); its least attractive feature was the potential need for self-catheterization due to urinary retention (54%). PTNS was found most attractive for being a nonsurgical option (32%) and having no reported significant complications (39%); its least attractive feature was need for frequent office visits (61%). SNM was found most attractive for its potential for long-term relief without frequent office visits (53%); its least attractive feature was need for an implanted device (33%). Patients opting for SNM had higher scores on Urinary Distress Inventory-6 and Incontinence Impact Questionnaire-7 questionnaires when compared to patients opting for BTX injections or PTNS (p < 0.05). 47.4% of patients eventually pursued a third-line therapy. Of those, there was a 67.6% concordance rate between the therapy patients ranked first and the therapy they eventually underwent. CONCLUSIONS: Patients with more severe OAB symptoms opt for more invasive and less time-consuming therapy with the potential for long-term relief, namely SNM. Despite thorough counseling, many patients do not progress to advanced OAB therapies. Understanding factors that influence patients' affinity toward a specific type of treatment can aid with individualized counseling on third-line OAB therapies.


Assuntos
Terapia por Estimulação Elétrica , Estimulação Elétrica Nervosa Transcutânea , Bexiga Urinaria Neurogênica , Bexiga Urinária Hiperativa , Humanos , Adolescente , Bexiga Urinária Hiperativa/tratamento farmacológico , Bexiga Urinária Hiperativa/etiologia , Preferência do Paciente , Terapia por Estimulação Elétrica/efeitos adversos , Bexiga Urinaria Neurogênica/tratamento farmacológico , Bexiga Urinaria Neurogênica/etiologia , Resultado do Tratamento
19.
Br J Nurs ; 31(15): 770-774, 2022 Aug 11.
Artigo em Inglês | MEDLINE | ID: mdl-35980916

RESUMO

BACKGROUND: Severe constipation can have a major impact on a child's quality of life and that of their families. Forming an antegrade continence enema (ACE) can be a transformational intervention to manage severe symptoms. However, operations can also have unpredictable negative consequences such as stomal stenosis or leaks from the ACE site. AIM: To investigate whether the choice of an ACE stopper can increase patient satisfaction and compliance. METHODS: A service evaluation with a standardised questionnaire was completed to assess quality of life and explore factors that have an impact on the preference for which ACE stopper was used. RESULTS: In total, 17 patients completed the evaluation of all three ACE stopper devices. At least 75% of the children improved their stooling pattern with an overall satisfaction rate of 8.5 out of 10. More patients preferred a flexible stopper but no one device was strongly preferred over the others. CONCLUSION: The study shows that an ACE has a positive impact on quality of life. With regards to the choice of ACE stopper, results show that different stoppers suit different individuals, highlighting that there is a place for a choice. This is useful information for healthcare providers who wish to improve compliance and reduce the risk of complications in this patient group.


Assuntos
Incontinência Fecal , Criança , Constipação Intestinal/terapia , Enema/métodos , Incontinência Fecal/terapia , Humanos , Preferência do Paciente , Projetos Piloto , Qualidade de Vida , Estudos Retrospectivos , Resultado do Tratamento
20.
PLoS One ; 17(8): e0272301, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35951503

RESUMO

PURPOSE: (1) To investigate the relative importance of convenience (consultation frequency and injection frequency) against treatment outcomes (visual and anatomical outcomes) and out-of-pocket medical costs via a discrete choice experiment (DCE), and (2) to investigate how patient characteristics affect patient treatment preferences. METHODS: Eligibility criteria were: (1) receiving a neovascular age-related macular degeneration (nAMD) diagnosis; (2) receiving anti-VEGF treatment; (3) being ≥21 years old, and (4) being able to speak and understand English/Mandarin. Patients were presented with eight choice tasks and asked to choose between their current treatment and two hypothetical treatments that varied by six attributes: number of clinic visits in a year, number of injections in a year, vision quality, control of swelling in retina, drug labelling and out-of-pocket cost. RESULTS: This analysis involved 180 patients. Based on latent class logistic regressions, vision quality was the most important attribute (34%) followed by cost (24%). The frequency of total clinic visits (15%) was the third most-important attribute, closely followed by labelling (12%) and control of retina swelling (11%). Injection frequency was the least important attribute (4%). CONCLUSIONS: Vision quality was the most important attribute followed by the out-of-pocket costs. Given the same outcomes, patients preferred treatment regimens which require fewer total clinic visits. In comparison, injection frequency alone did not influence patient preferences. With increasing treatment options for nAMD, understanding patients' preferences can help clinicians in selecting agents and treatment regimen most preferred for each patient, which may lead to improved long-term adherence and outcomes.


Assuntos
Degeneração Macular , Preferência do Paciente , Adulto , Inibidores da Angiogênese , Anticorpos Monoclonais/uso terapêutico , Humanos , Injeções Intravítreas , Degeneração Macular/tratamento farmacológico , Ranibizumab/uso terapêutico , Fator A de Crescimento do Endotélio Vascular/uso terapêutico , Fatores de Crescimento do Endotélio Vascular , Adulto Jovem
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