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1.
Child Abuse Negl ; : 107037, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39261260

RESUMO

Research focused on understanding the experiences of individuals with sexual attractions to children and their pursuit of sexual fulfilment faces notable limitations, primarily stemming from ethical and legal challenges, and pervasive social stigma. This review paper explores these challenges and outlines the connections between sexual fulfilment, treatment goals and overall wellbeing. We consider the importance of sexual satisfaction in promoting mental and physical health, and its potential role in reducing the risk of sexually abusive behaviors. Recognizing that promoting healthier and more fulfilling lives extends beyond risk mitigation, the paper highlights future research avenues such as exploring the conceptualization and achievement of sexual satisfaction. In examining alternative perspectives, including the potential risk enhancement associated with achieving sexual fulfilment, we also argue the need for an evidence-based approach and robust research agenda to inform and guide interventions. Through these considerations, the paper aims to encourage a more informed and compassionate understanding of sexual fulfilment for people with sexual attractions to children.

2.
Adv Ther ; 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39249592

RESUMO

This article summarises key themes from a symposium held during the recent European Respiratory Society congress, which took place in Vienna, Austria, 7-11 September 2024. The symposium was sponsored by GSK and entitled 'Striving for disease stability in COPD: Giving patients more of their best days'. During the session, the speakers (MeiLan Han, Lowie Vanfleteren and Dave Singh) highlighted the specific challenges of chronic obstructive pulmonary disease (COPD), such as its unpredictable and unstable nature, with additional insights provided from patients with COPD in the form of video interviews. The faculty discussed whether treatment standards and goals should be more ambitious to provide all patients the stability and predictability they deserve and the opportunity to do more while living with COPD.

3.
Adv Ther ; 41(9): 3598-3614, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39052152

RESUMO

INTRODUCTION: Understanding the patient journey of hepatocellular carcinoma (HCC) may inform future clinical decision-making and enhance the patient experience. The objectives of this study were to explore the patient experience of HCC in relation to treatment options, treatment decision-making and treatment goals throughout the disease journey. This study also aimed to determine the symptoms and impacts of HCC across early, intermediate and advanced HCC. METHODS: Semi-structured 60-min interviews were conducted with n = 50 patients with HCC and n = 12 healthcare professionals (HCPs) with experience of treating patients with HCC. Interview data were analyzed using directed content analysis techniques with a hybrid inductive and deductive approach. An assessment of conceptual saturation was conducted for patients' symptom experience. RESULTS: Patients described treatment decisions as mostly HCP-led. In this study, surgery/resection was the most frequently offered treatment option across the HCC journey, and most patients were satisfied with the treatment options presented to them. Overall, patients described extending their overall survival (OS) and preserving quality of life (QoL) as their most important treatment goals, with patients diagnosed with advanced/unresectable HCC prioritizing QoL. HCPs also prioritized OS and progression-free survival (PFS) though reported that QoL became more important as HCC progressed. Patients experienced various symptoms across the HCC journey including fatigue, nausea, appetite loss, diarrhea and pain. CONCLUSION: Overall, HCPs and patients collaborate throughout the treatment journey regarding treatment decisions and shared treatment goals. OS is critically important to patients and HCPs, though treatment goals may change depending on various clinical factors.


Liver cancer is the third leading cause of cancer death worldwide. Very few studies have directly explored how patients experience liver cancer and its treatment. This research was performed to understand the patient experience of liver cancer including treatment decisions and goals, communication dynamics between patients and their treating doctors, the types of treatment offered to patients and symptoms that patients experience while living with liver cancer. Patients and doctors were interviewed to understand their experience of living with and treating liver cancer. Overall, patients and doctors work together to decide on treatment. Patients generally trusted their doctor's knowledge and expertise when selecting the best treatment(s) for them. Treatment decisions are mostly based on how far along the cancer has progressed. Patients described living longer and maintaining a good quality of life as their most important treatment goals, as well as avoiding liver cancer returning or worsening. Doctors identified that patients living longer, time without worsening of liver cancer and managing side effects as important treatment goals.


Assuntos
Carcinoma Hepatocelular , Neoplasias Hepáticas , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Carcinoma Hepatocelular/terapia , Carcinoma Hepatocelular/psicologia , Neoplasias Hepáticas/terapia , Neoplasias Hepáticas/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Idoso de 80 Anos ou mais , Satisfação do Paciente
4.
Haemophilia ; 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38986684

RESUMO

BACKGROUND: Treatment options for people with haemophilia are evolving at a rapid pace and a range of prophylactic treatment options using various technologies are currently available, each with their own distinct safety and efficacy profile. TREATMENT GOALS: The access to replacement therapy and prophylaxis has driven a dramatic reduction in mortality and resultant increase in life expectancy. Beyond this, the abolition of bleeds and preservation of joint health represent the expected, but rarely attained, goals of haemophilia treatment and care. These outcomes also do not address the complexity of health-related quality of life impacted by haemophilia and its treatment. CONCLUSION: Capitalizing on the major potential of therapeutic innovations, 'Normalization' of haemostasis, as a concept, should include the aspiration of enabling individuals to live as normal a life as possible, free from haemophilia-imposed limitations. To achieve this-being supported by the data reviewed in this manuscript-the concept of haemostatic and life Normalization needs to be explored and debated within the wider multidisciplinary teams and haemophilia community.

5.
Sex Abuse ; : 10790632241268465, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39049563

RESUMO

The provision of effective mental health services to individuals attracted to children is rapidly expanding. However, these services have not yet been integrated into general mental healthcare systems and are mainly offered by organizations that predominantly provide services to child sexual abuse perpetrators. Little is known about the perspective, treatment goals, and approaches employed by prevention-specialist mental health professionals when working with clients attracted to children. To address this gap, we used purposive sampling to recruit 10 practitioners who had experience of working in prevention settings with clients attracted to children. After conducting semi-structured interviews and analyzing data through interpretative phenomenological analysis, we identified three main themes and four subthemes within the data. While most participants believed that attraction to minors is unmodifiable or doubted the possibility of modifiability, this belief did not necessarily manifest in their practice. Participants stressed the importance of finding safe alternatives for clients and highlighted the significance of accessing evidence-based information on alternative sexual outlets, such as sex dolls. One overarching theme that emerged across all themes and within participants' accounts was the concern of escalation, indicating a fear that pedophilic fantasies or alternative sexual outlets such as sex dolls could potentially lead to sexual offenses. The findings shed light on the approach of prevention-specialist mental health professionals in working with clients attracted to children and may be used to inform future intervention plans to facilitate service provision to this population.

6.
Expert Rev Respir Med ; 18(7): 457-468, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39044348

RESUMO

INTRODUCTION: In the management of chronic obstructive pulmonary disease (COPD), inhalation therapy plays a pivotal role. However, clinicians often face the dilemma of choosing between single and multiple inhaler therapies for their patients. This choice is critical because it can affect treatment efficacy, patient adherence, and overall disease management. AREAS COVERED: This article examines the advantages and factors to be taken into consideration when selecting between single and multiple inhaler therapies for COPD. EXPERT OPINION: Both single and multiple inhaler therapies must be considered in COPD management. While single inhaler therapy offers simplicity and convenience, multiple inhaler therapy provides greater flexibility and customization. Clinicians must carefully evaluate individual patient needs and preferences to determine the most appropriate inhaler therapy regimen. Through personalized treatment approaches and shared decision-making, clinicians can optimize COPD management and improve patient well-being. Nevertheless, further research is required to compare the effectiveness of single versus multiple inhaler strategies through rigorous clinical trials, free from industry bias, to determine the optimal inhaler strategy. Smart inhaler technology appears to have the potential to enhance adherence and personalized management, but the relative merits of smart inhalers in single inhaler regimens versus multiple inhaler regimens remain to be determined.


Assuntos
Broncodilatadores , Adesão à Medicação , Nebulizadores e Vaporizadores , Doença Pulmonar Obstrutiva Crônica , Humanos , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Administração por Inalação , Broncodilatadores/administração & dosagem , Resultado do Tratamento , Desenho de Equipamento
7.
Hastings Cent Rep ; 54(3): 11-14, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38842906

RESUMO

For more than sixty years, surgeons have used bioethical strategies to promote patient self-determination, many of these now collectively described as "informed consent." Yet the core framework-understanding, risks, benefits, and alternatives-fails to support patients in deliberation about treatment. We find that surgeons translate this framework into an overly complicated technical explanation of disease and treatment and an overly simplified narrative that surgery will "fix" the problem. They omit critical information about the goals and downsides of surgery and present untenable options as a matter of patient choice. We propose a novel framework called "better conversations." Herein, surgeons provide context about clinical norms, establish the goals of surgery, and comprehensively delineate the downsides of surgery to generate a deliberative space for patients to consider whether surgery is right for them. This paradigm shift meets the standards for informed consent, supports deliberation, and allows patients to anticipate and prepare for the experience of treatment.


Assuntos
Consentimento Livre e Esclarecido , Relações Médico-Paciente , Humanos , Consentimento Livre e Esclarecido/ética , Relações Médico-Paciente/ética , Comunicação , Autonomia Pessoal , Procedimentos Cirúrgicos Operatórios/ética , Tomada de Decisões/ética
8.
J Geriatr Oncol ; 15(6): 101811, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38896950

RESUMO

INTRODUCTION: Selecting the appropriate treatment for older patients with non-muscle invasive (NMIBC) or muscle-invasive bladder cancer (MIBC) is challenging due to smoking-related comorbidities, treatment toxicity, and an increased risk of adverse health outcomes. Considering patient preferences prior to treatment is therefore crucial. Here, we aimed to identify the health outcome priorities of older patients with high-risk NMIBC (HR-NMIBC) or MIBC. MATERIALS AND METHODS: Patients aged 70 years or older or at risk for frailty, diagnosed with HR-NMIBC or MIBC without distant metastases, were referred for a comprehensive geriatric assessment (CGA). The CGA consisted of an interview, physical examination, and several tests to examine physical, cognitive, functional, and social status. Quality of life was assessed using EQ5D and EORTC QLQ-C30 questionnaires. Health outcome priorities were discussed using the Outcome Prioritization Tool (OPT) and associations between health outcome priorities and CGA-determinants and quality of life were studied. RESULTS: Of 146 patients (14 HR-NMIBC, 132 MIBC), OPT data was available for 139. Life extension was most often prioritized (44%), closely followed by preserving independence (40%). Reducing pain (7%) and other symptoms (9%) were less often prioritized. Patients prioritizing life extension had fewer musculoskeletal problems than patients prioritizing reducing pain or other symptoms (p = 0.02). Patients at risk of or suffering from malnutrition more frequently selected reducing pain or other symptoms as their health outcome priority (p = 0.004). For all other CGA-determinants and quality of life, there were no significant differences between groups based on health outcome priorities. DISCUSSION: In older patients with HR-NMIBC and MIBC, life extension and preserving independence are the most common health outcomes priorities. CGA-determinants and quality of life are generally not associated with the prioritization of health outcomes. As health outcome priorities cannot be predicted by CGA-determinants or quality of life, it is crucial to discuss health outcome priorities with patients to promote shared decision-making.


Assuntos
Avaliação Geriátrica , Qualidade de Vida , Neoplasias da Bexiga Urinária , Humanos , Neoplasias da Bexiga Urinária/terapia , Idoso , Masculino , Feminino , Idoso de 80 Anos ou mais , Preferência do Paciente , Fragilidade , Prioridades em Saúde
9.
Australas J Dermatol ; 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38741474

RESUMO

BACKGROUND: Treatment goals have been established in Australia to facilitate the management of adults with moderate to severe psoriasis. The Australasian College of Dermatologists sought to determine if and how these adult treatment goals could be modified to accommodate the needs of paediatric and adolescent patients. METHODS: A modified Delphi approach was used. Comprehensive literature review and guideline evaluation resulted in the development of statements and other questions to establish current clinical practices. Two rounds of anonymous voting were undertaken, with a collaborative meeting held in between to discuss areas of discordance. Overall, consensus was defined as achievement of ≥75% agreement in the range 7-9 on a 9-point scale (1 strongly disagree; 9 strongly agree). RESULTS: Consensus was achieved on 23/29 statements in round 1 and 17/18 statements in round 2. There was a high level of concordance with treatment criteria in the adult setting. The limitations of applying assessment tools developed for use in adult patients to the paediatric setting were highlighted. Treatment targets in the paediatric setting should include objective metrics for disease severity and psychological impact on the patients and their family, and be based on validated, age-appropriate tools. CONCLUSION: While the assessment, classification and management of moderate to severe psoriasis in paediatric patients aligns with metrics established for adults, it is vital that nuances in the transition from childhood to adolescence be taken into account. Future research should focus on psoriasis severity assessment scales specific to the paediatric setting.

10.
Allergy Asthma Clin Immunol ; 20(1): 31, 2024 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-38637825

RESUMO

BACKGROUND: Since the last guidance was published by the Canadian Thoracic Society, there have been several advances in the clinical management of severe asthma. To gain a better understanding of the current standards of care and treatment patterns of patients, the CASCADE practice reflective program was established to conduct a real-world analysis of severe asthma management among specialists in Canada with a goal of identifying areas of opportunity to enhance patient management and outcomes. METHODS: The CASCADE program was a two-part practice reflective and assessment program delivered through an on-line portal for selected specialists (Respirologists and Allergists) in Canada. The program consisted of a one-time overview survey of physician practice to establish overall practice parameters, followed by a review of at least 5 severe asthma patients to establish the current landscape of severe asthma management. RESULTS: The program collected practice overview surveys from 78 specialists (52 Respirologists, 24 Allergists, and 2 General practice physicians with an interest in respiratory disease) in 8 provinces. Practices included a variety of types in both large metropolitan centres and smaller regional settings. There were 503 patients reviewed and included in the program. Most (65%) patients were currently using a biologic treatment, 30% were biologic naive, and 5% had used a biologic treatment in the past. Most patients (53%) were reported to have mixed allergic and eosinophilic phenotypes, despite a perception that allergic, eosinophilic and mixed phenotypes were evenly balanced in the physician practice. Overall, patients currently treated with biologic agents had parameters suggesting higher control and were more satisfied with treatment. However, there was less than optimal treatment satisfaction for more than half of all patients, particularly for those patients not treated with a biologic agent. CONCLUSIONS: Phenotyping is hampered by poor availability for several assessments, and the full range of treatments are not currently fully utilized, partly due to physician familiarity with the agents and partly due to prescribing restrictions. Even when treated with biologic agents, patient satisfaction can still be improved.

11.
Dermatol Ther (Heidelb) ; 14(4): 933-952, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38521874

RESUMO

INTRODUCTION: The National Psoriasis Foundation (NPF) recommends evaluating patient response to treatment at week 12, with a target response of ≤ 1% body surface area (BSA) affected by plaque psoriasis and an acceptable response of BSA ≤ 3% or ≥ 75% improvement. This post hoc analysis compared the achievement of NPF target and acceptable responses for ixekizumab (IXE) versus other biologics. METHODS: Outcomes were evaluated at week 12 for patients with moderate-to-severe plaque psoriasis from four head-to-head randomized clinical trials (RCTs; UNCOVER-2, UNCOVER-3, IXORA-R, and IXORA-S) and one real-world prospective observational study (Psoriasis Study of Health Outcomes; PSoHO). RCT patients were treated with IXE or etanercept (ETN; UNCOVER-2/3), guselkumab (GUS; IXORA-R), or ustekinumab (UST; IXORA-S). PSoHO patients were treated with anti-interleukin (IL)-17A biologics (IXE, secukinumab, SEC) and other approved biologics for the treatment of plaque psoriasis. Patients with missing outcomes were imputed as non-responder imputation. For RCT data, statistical comparisons between treatment groups were performed using Fisher's exact test with no multiplicity adjustments. For real-world data, adjusted comparative analyses were performed using frequentist model averaging (FMA) and reported as odds ratio (OR). RESULTS: Across the four head-to-head clinical trials analyzed, significantly higher proportions of patients achieved target and acceptable responses at week 12 with IXE versus ETN, GUS, or UST. Likewise, the proportion of PSoHO patients achieving target and acceptable response at week 12 was higher with IXE compared with other individual biologics. Adjusted comparative analyses showed that IXE had significantly greater odds of target and acceptable response at week 12 versus SEC, GUS, risankizumab (RIS), adalimumab (ADA), UST, and tildrakizumab (TILD) and numerically greater odds of target and acceptable response at week 12 versus brodalumab (BROD). CONCLUSION: Across both clinical studies and real-world settings, more patients treated with IXE achieved NPF target and acceptable responses at week 12 compared with those treated with other biologics. TRIAL REGISTRATION: UNCOVER-2 (NCT01597245); UNCOVER-3 (NCT01646177); IXORA-R (NCT03573323); IXORA-S (NCT02561806); PSoHO (EUPAS24207).

12.
J Fluency Disord ; 80: 106040, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38493582

RESUMO

A clinical, evidence-based model to inform clients and their parents about the nature of stuttering is indispensable for the field. In this paper, we propose the Erasmus Clinical Model of Stuttering 2.0 for children who stutter and their parents, and adult clients. It provides an up-to-date, clinical model summary of current insights into the genetic, neurological, motoric, linguistic, sensory, temperamental, psychological and social factors (be it causal, eliciting, or maintaining) related to stuttering. First a review is presented of current insights in these factors, and of six scientific theories or models that have inspired the development of our current clinical model. Following this, we will propose the model, which has proven to be useful in clinical practice. The proposed Erasmus Clinical Model of Stuttering visualizes the onset and course of stuttering, and includes scales for stuttering severity and impact, to be completed by the (parent of) the person who stutters. The pathway of the model towards stuttering onset is based on predisposing and mediating factors. In most children with an onset of stuttering, stuttering is transient, but if stuttering continues, its severity and impact vary widely. The model includes the circle of Engel (1977), which visualizes unique interactions of relevant biological, psychological, and social factors that determine the speaker's experience of stuttering severity and its impact. Discussing these factors and their interaction with an individual client can feed into therapeutic targets. The model is supplemented by a lifeline casus.


Assuntos
Gagueira , Gagueira/etiologia , Gagueira/fisiopatologia , Humanos , Criança , Adulto , Pais/psicologia , Modelos Psicológicos
13.
Clin Psychol Psychother ; 31(1): e2948, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38343344

RESUMO

This study investigated the effectiveness of brief individual experiential schema therapy (ST) in 12 adult outpatients with cluster C personality disorders (PD) using randomised multiple baseline design. Waitlist period was followed by five explorative sessions, 18 experiential ST sessions, two treatment follow-up (FU) booster sessions and a 6-month FU assessment. Overall well-being (ORS), behavioural treatment goals and negative core beliefs were assessed 60-91 times, global symptomatic distress (BSI) six times. PD severity (SCID-5-PD) was pre-post-analysed. Randomisation and non-parametric tests showed large significant effects (d = 1.08-2.38, r = .53-.66) on all outcomes at treatment-FU and 6-month FU assessment. This is the first study providing preliminary evidence of effectiveness of brief individual experiential ST for patients with cluster C PD, tentatively challenging the common tenet that long treatment duration is required. Due to limitations, replication is recommended.


Assuntos
Terapia Cognitivo-Comportamental , Psicoterapia de Grupo , Adulto , Humanos , Pacientes Ambulatoriais , Terapia do Esquema , Transtornos da Personalidade/terapia , Resultado do Tratamento
15.
Expert Opin Biol Ther ; 23(12): 1307-1315, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38108300

RESUMO

BACKGROUND: Tralokinumab is a human monoclonal antibody targeting interleukin-13 that is approved for the treatment of moderate-severe atopic dermatitis. Studies analyzing the efficacy and safety of tralokinumab in a real-world setting are scarce. RESEARCH DESIGN AND METHODS: A European, multicentric, real-world, retrospective cohort study was defined to assess the effectiveness and safeness profile of tralokinumab, investigating the achievement of pre-specified treatment goals; and to detect potential differences in terms of effectiveness and safeness across some selected patient subcohorts. RESULTS: A total of 194 adult patients were included in this study. A significant improvement in physician-assessed disease severity was detected at each follow-up visit as compared with baseline and similar trend was observed for patient-reported outcomes and quality of life. No meaningful difference in effectiveness was found when considering patient age (<65 versus ≥65 years), neither dissecting patient cohort in dupilumab-naive vs dupilumab-treated subjects. Among tralokinumab-treated patients, 88% achieved at least one currently identified real-world therapeutic goal at week 16. CONCLUSIONS: This retrospective multicenter study confirmed the effectiveness and safeness of tralokinumab throughout 32 weeks of observation, showing the achievement of therapeutic goals identified in both trial and real-world settings in a large proportion of tralokinumab-treated patients.


Assuntos
Dermatite Atópica , Adulto , Humanos , Idoso , Dermatite Atópica/diagnóstico , Dermatite Atópica/tratamento farmacológico , Estudos Retrospectivos , Objetivos , Estudos de Coortes , Qualidade de Vida , Resultado do Tratamento , Anticorpos Monoclonais/efeitos adversos , Índice de Gravidade de Doença , Método Duplo-Cego
16.
Toxins (Basel) ; 15(12)2023 11 29.
Artigo em Inglês | MEDLINE | ID: mdl-38133180

RESUMO

The objective of this article is to introduce the GO-FAST Tool (developed by the Toxnet group) to clinicians working in the field of neurological rehabilitation, specifically post-stroke spasticity management. The concepts utilized in the Tool and described in this article can be broadly grouped into five topics: the principles of patient-centred goal-setting; an algorithm for setting SMART (specific, measurable, attainable, realistic, and timed) treatment goals; goal-related target muscles and botulinum toxin type A dose determinants; goal attainment follow-up, scoring, and interpretation; and the multimodal approach to spasticity management. The Tool can enhance clinical practice by providing guided assistance with goal-setting and target muscle selection for botulinum toxin type A treatment. It also provides support with the follow-up evaluation of goal attainment and calculation of treatment success. The Tool is designed to be used by clinicians with varying levels of expertise in the field of neurological rehabilitation and post-stroke spasticity management, from those who are new to the field to those with many years of experience. A case study is presented in the Results Section of the article to illustrate the utility of the Tool in setting SMART treatment goals in the management of patients with post-stroke spasticity.


Assuntos
Toxinas Botulínicas Tipo A , Fármacos Neuromusculares , Acidente Vascular Cerebral , Humanos , Toxinas Botulínicas Tipo A/uso terapêutico , Fármacos Neuromusculares/uso terapêutico , Objetivos , Extremidade Superior , Espasticidade Muscular/tratamento farmacológico , Espasticidade Muscular/reabilitação , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/tratamento farmacológico , Resultado do Tratamento , Músculos
17.
Patient Prefer Adherence ; 17: 1825-1843, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37525842

RESUMO

Purpose: To better understand what is most important to people living with human immunodeficiency virus (PLWH) when choosing their treatment. We assessed how PLWH trade off the potential risks and benefits of oral and long acting injectable (LAI) treatments. Participants and Methods: Firstly, in-depth interviews were conducted with 11 PLWH to develop a holistic understanding of experiences and determine attributes that contribute to treatment decision-making. Secondly, a discrete choice experiment (DCE) was used to understand the treatment preferences for PLWH with n = 99 PLWH aged 18 years or over with a diagnosis of human immunodeficiency virus (HIV) and who were currently using anti-retroviral therapy (ART). Study participants were presented with 12 scenarios and asked to select their preferred treatment among two hypothetical injectable treatment alternatives, "injection 1" and "injection 2" and their current oral ART treatment. The DCE data were modelled using a latent class model (LCM). Results: The model revealed significant heterogeneity in preferences for treatment attributes among study participants. Two segments/classes of PLWH were identified. The first segment expressed a strong preference for their current oral treatment; the second segment showed strong preference for the injection treatment and for it to be administered in a GP clinic. Overall, out-of-pocket cost was the most important attribute for participants. One-third of PLWH were willing to switch to an LAI. Conclusion: Not all PLWH valued the same treatment attributes equally. Overall, out-of-pocket costs for treatments were considered by respondents as the most determining factor in making treatment choices. Results have important implications for healthcare policy and will serve to better inform patients and stakeholders involved in the treatment decision-making process about the treatment preferences of PLWH. Clinicians are encouraged to consider shared decision-making to establish the treatment course that best aligns with PLWH's treatment goals.

18.
Australas J Dermatol ; 64(4): 476-487, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37501636

RESUMO

BACKGROUND: Over the last decade, the treatment landscape for moderate-severe psoriasis has rapidly evolved. The Australasian College of Dermatologists sought to review and update previously published treatment goals for moderate-severe psoriasis. METHODS: A modified Delphi approach was used. Comprehensive literature review and guideline evaluation resulted in the development of statements and other questions to establish current clinical practices. Two rounds of anonymous voting were undertaken, with a collaborative meeting held in between to discuss areas of discordance. Overall, consensus was defined as achievement of ≥75% agreement in the range 7-9 on a 9-point scale (1 strongly disagree; 9 strongly agree). RESULTS: Consensus was achieved on 26/29 statements in round 1 and a further 20 statements in round 2. There was strong agreement to expanding the classification/definition of psoriasis severity by including a choice of metrics, incorporating quality of life measures, and widening the scope of high-impact sites. Consensus was also reached on revised treatment response criteria, which were then incorporated into a new treatment algorithm. There was discordance with the current requirement to undertake a trial with established systemic agents before accessing targeted therapy. CONCLUSION: The ability of new targeted treatment options to change the narrative in psoriasis patient care can only be properly realised if challenges to timely and equitable access are addressed. The proposed framework for the assessment, classification and management of moderate-severe psoriasis aligns with international recommendations. Its adoption into Australian clinical practice is hoped to improve treatment outcomes and patients' satisfaction with their care.


Assuntos
Psoríase , Qualidade de Vida , Humanos , Adulto , Objetivos , Austrália , Psoríase/tratamento farmacológico , Resultado do Tratamento , Técnica Delphi
19.
Patient Prefer Adherence ; 17: 1335-1345, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37284248

RESUMO

Introduction: Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking. Objective: Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology. Patients and Methods: In an open survey of n = 50 patients, potential benefits of therapy from the patient's perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization. Results: N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach's alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = -0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001). Conclusion: The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.

20.
J Dual Diagn ; 19(2-3): 166-176, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37347718

RESUMO

OBJECTIVE: Abstinence has been the primary treatment goal for alcohol and other drug (AOD) users attending withdrawal treatment. However, other outcomes including harm reduction have also been identified. This observational study aimed to describe participants' goals and reasons for seeking inpatient withdrawal treatment and compare the needs of clients with comorbid mental health problems and those without. METHODS: Participants completed questionnaires at intake and discharge. Questionnaires assessed reasons for entering withdrawal treatment, goals, comorbidity, and perceived help received. RESULTS: The sample comprised 1746 participants (69.4% male). Participants endorsed diverse reasons for entering withdrawal treatment. The most and least endorsed reasons were "stop using" (97.9%) and "legal reasons" (43.1%). Comorbidity groups varied significantly in their endorsement of reasons for mental health, physical health, harm reduction, financial, and legal. CONCLUSION: AOD users enter withdrawal treatment with a variety of reasons and goals including harm reduction. Variations in rates of endorsement highlight the importance of identifying individual needs dependent on mental health comorbidity.


Assuntos
Objetivos , Pacientes Internados , Humanos , Masculino , Feminino , Consumo de Bebidas Alcoólicas , Hospitalização , Transtorno da Personalidade Antissocial
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