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1.
PLoS Med ; 16(5): e1002800, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31067237

RESUMO

BACKGROUND: Treatment decision-making regarding immunosuppressive therapy is challenging for individuals with lupus. We assessed the effectiveness of a decision aid for immunosuppressive therapy in lupus nephritis. METHODS AND FINDINGS: In a United States multicenter, open-label, randomized controlled trial (RCT), adult women with lupus nephritis, mostly from racial/ethnic minority backgrounds with low socioeconomic status (SES), seen in in- or outpatient settings, were randomized to an individualized, culturally tailored, computerized decision aid versus American College of Rheumatology (ACR) lupus pamphlet (1:1 ratio), using computer-generated randomization. We hypothesized that the co-primary outcomes of decisional conflict and informed choice regarding immunosuppressive medications would improve more in the decision aid group. Of 301 randomized women, 298 were analyzed; 47% were African-American, 26% Hispanic, and 15% white. Mean age (standard deviation [SD]) was 37 (12) years, 57% had annual income of <$40,000, and 36% had a high school education or less. Compared with the provision of the ACR lupus pamphlet (n = 147), participants randomized to the decision aid (n = 151) had (1) a clinically meaningful and statistically significant reduction in decisional conflict, 21.8 (standard error [SE], 2.5) versus 12.7 (SE, 2.0; p = 0.005) and (2) no difference in informed choice in the main analysis, 41% versus 31% (p = 0.08), but clinically meaningful and statistically significant difference in sensitivity analysis (net values for immunosuppressives positive [in favor] versus negative [against]), 50% versus 35% (p = 0.006). Unresolved decisional conflict was lower in the decision aid versus pamphlet groups, 22% versus 44% (p < 0.001). Significantly more patients in the decision aid versus pamphlet group rated information to be excellent for understanding lupus nephritis (49% versus 33%), risk factors (43% versus 27%), medication options (50% versus 33%; p ≤ 0.003 for all); and the ease of use of materials was higher in the decision aid versus pamphlet groups (51% versus 38%; p = 0.006). Key study limitations were the exclusion of men, short follow-up, and the lack of clinical outcomes, including medication adherence. CONCLUSIONS: An individualized decision aid was more effective than usual care in reducing decisional conflict for choice of immunosuppressive medications in women with lupus nephritis. TRIAL REGISTRATION: Clinicaltrials.gov, NCT02319525.

2.
J Pain Symptom Manage ; 58(1): 56-64, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30878299

RESUMO

CONTEXT/OBJECTIVES: We sought to characterize patterns of social support types (i.e., emotional, informational, appraisal, and instrumental) within the caregiver/spouse, family, and spiritual/religious contexts for patients diagnosed with cancer. METHODS: Focus groups were conducted with mixed groups of patients with cancer and caregiver/family members at a Midwestern comprehensive cancer center. Participants completed brief demographic questionnaires. Focus groups were moderated using semistructured interviews. The 90-minute discussions were audio-recorded, transcribed, and uploaded into NVivo for analysis using a deductive approach based on four social support types and the constant comparative method. RESULTS: Four focus groups were conducted (n = 25). The average age was 58.4 years (SD = 15.1, range 26.0-76.0). Patient participants reported different malignancy types, including breast, gynecologic, skin, oral, and Non-Hodgkin's lymphoma. Participants acknowledged changes within their social network across the cancer journey. Overall, the caregiver/spouse fulfilled all types of social support. Spirituality/religion was often discussed as a form of appraisal social support. Fellow survivors were sources of informational support. Across groups, nondirective/emotional support was most frequently mentioned. CONCLUSION: Cancer is a unique experience, and understanding the importance of social support, including types of social support needed from different contexts to best meet the needs of the patient, may promote optimal, patient-centered care across the cancer trajectory.

3.
J Rheumatol ; 46(9): 1198-1201, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30877212

RESUMO

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV). METHODS: An international Delphi exercise conducted among investigators identified items considered important to measure active disease. In parallel, qualitative research with patients was conducted, including interviews and focus groups. RESULTS: Next steps prioritized by the group for LVV include (1) defining disease states (remission, flare, and patient-acceptable symptom state) and (2) selection of patient-reported outcome tools. CONCLUSION: The ultimate goal is to develop an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV.

4.
J Cancer Educ ; 2019 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-30772927

RESUMO

The purpose of the current study was to characterize the experiences of cancer patients and their caregiver/family members around their relationship with their oncologist, health care team, and the hospital environment. Participants were recruited from The Ohio State University Comprehensive Cancer Center. Participant sociodemographic factors were assessed. Focus groups were moderated and recorded by two members of the research team using a semi-structured interview format. The audio recordings were transcribed and uploaded to NViVO 11 for analyses. Four focus groups were conducted with 25 participants. The mean age of participants was 58.4 years (SD = 15.1, range 26.0-76.0). Participants who were identified as patients (84%) reported different malignancy types including breast (56%), gynecologic (16%), skin (6%) oral (6%), and non-Hodgkin's lymphoma (6%). Three major themes that emerged around the patient-oncologist relationship, include (1) choosing a physician and health care location, (2) relationship with the physician, health care team, and hospital environment; and (3) patient engagement and decision-making. Subthemes highlighted the importance of the flexible communication behaviors and trustworthiness of the oncologist, and the impact of other health care team members. Patients also reported the desire to be engaged in making treatment-related decisions and to include the caregiver/spouse in all stages of cancer care. Understanding the experience of cancer patients in a relationship with their oncologist in the context of the health care team and health care environment will be an important area of future research to provide optimal, tailored patient-centered cancer care.

5.
J Rheumatol ; 2019 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-30709963

RESUMO

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials. METHODS: A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements. RESULTS: OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains. CONCLUSION: A revised core domain set will undergo further consensus-building.

6.
Curr Opin Rheumatol ; 31(2): 125-131, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30624283

RESUMO

PURPOSE OF REVIEW: The current review highlights the growing number of available methods used to measure patient preferences and discusses how this impacts preference research in rheumatology. Spurred by the growing role of preferences in regulatory decisions and drug development, researchers have begun applying preference methods to study questions beyond the clinical context. We explore these trends, provide case studies highlighting changes in measuring patient preferences, compare strengths and weaknesses of common stated-preference methods, and discuss considerations for the future use of these methods. RECENT FINDINGS: Early literature on patient preferences often mimicked clinical practice, asking whether treatment A is better or worse than treatment B for a patient. Early applications of patient preference methods in rheumatology aimed to value different attributes of treatments, but remained focused on informing clinical questions. Spurred by interest in preferences by regulatory agencies and patient-centeredness throughout the product lifecycle, there are now a wide array of methods available to measure preference. SUMMARY: Although these different preference methods have strengths and weaknesses, they serve to highlight the broad number of questions that could help rheumatology beyond the clinical context. Researchers in rheumatology now have the opportunity to better serve diverse stakeholders by considering how these methods could aid in clinical trial design, regulatory policy, and other elements of the medical product life cycle.

7.
Eur J Cancer Care (Engl) ; 28(3): e12981, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30561074

RESUMO

INTRODUCTION: The patient-physician relationship is a critical component of patient-centred health care. The patient-oncologist relationship is particularly important due to the uncertainties that surround treatment of cancer. The goal of the current review was to summarise current methodological approaches to studying the relationship between cancer patients and oncologists. METHODS: A systematic review using PsychInfo, Ebsco, PubMed and Google Scholar was performed using combinations and variations of the MESH terms: "relationship," "doctor-patient," and "oncology." The included studies explicitly measured the "relationship" as an independent or dependent variable. Data were extracted and analysed. RESULTS: The 13 studies included in the review were published from 2004 to 2018. There was little agreement between studies on the definition of the patient-oncologist relationship. Trust was most frequently measured, but methods varied. Most studies evaluated the patient perspective (n = 10). The few studies that considered the oncologist perspective did not measure their perception of the relationship. CONCLUSIONS: The current review demonstrates that current approaches used to assess the patient-oncologist relationship are inconsistent. These differences may limit our understanding of patient needs in current research and practice. Future research should focus on the use of a relational lens as a theoretical framework to assess the patient-oncologist relationship.

8.
Support Care Cancer ; 2018 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-30267167

RESUMO

PURPOSE: To explore the reciprocal process of decisional conflict within the patient-physician dyad, and its relationship with patient general health and patient-perceived physician helpfulness. Among the subset of participants who were in a committed relationship, we examined the congruence in reciprocal processes between patient-spouse/caregiver and patient-physician dyads. METHODS: An online retrospective survey of cancer patients was conducted in the USA. The reciprocal process of decisional conflict within the patient-physician dyad was measured using the Decisional Conflict Scale (DCS). The Perception of Spousal Reciprocity Scale (POSRS) was used to measure reciprocity in the patient-spouse/caregiver dyad. RESULTS: The final analytic cohort consisted of 116 participants. The average age of participants was 58.4 years, the majority were female (66.7%), and the most common diagnosis was breast cancer (27.9%). Participants who perceived their physician as more helpful were more likely to report lower levels of decisional conflict on the DCS total scale and subscales (r range = 0.24-0.46, p < 0.05). Higher scores on the PSORS were associated with lower levels of decisional conflict (r = - 0.37, p < 0.01). Participants not in a relationship had higher levels of decisional conflict about their treatment decisions (M = 21.69) than participants in a relationship (M = 9.69, t(26.95) = - 2.26, p = 0.032). DISCUSSION: Physicians are an important resource for both the patient and caregiver during the cancer journey. Understanding reciprocal processes within the patient-physician relationship related to patient-centered care and including the caregiver in the medical decision-making process can decrease the threat of decisional conflict and subsequent adverse outcomes.

9.
Artigo em Inglês | MEDLINE | ID: mdl-30156761

RESUMO

OBJECTIVE: To evaluate how demographics, health literacy, numeracy, and patient activation are related to transition readiness in adolescent and young adult (AYA) patients, and to describe how parent/guardian (PG) performance on these metrics predicts AYA transition readiness. METHODS: In this single center, cross-sectional study, consecutive English-speaking AYA age 17 to 21 years and PGs were recruited from outpatient rheumatology clinics. Participants completed the following self-reported instruments: demographic questionnaire, Short Test of Fundamental Health Literacy (sTOFHLA), Objective Numeracy Scale (ONS), Subjective Numeracy Scale (SNS), Symbolic-number Mapping (SMap), Patient Activation Measure (PAM), and Transition Readiness Assessment Questionnaire (TRAQ; AYA only). RESULTS: Participants included 91 AYA, of whom 64 of 91 (70%) had juvenile idiopathic arthritis (JIA), and 54 PG. Mean TRAQ score was 4.0 (SD ± 0.65), correlating with "I am starting to do this" stage of change. Most participants (98%) had adequate health literacy. Multivariable regression analysis showed that AYA female gender, older age, and higher patient activation significantly predicted higher TRAQ scores (p < 0.05). No PG characteristics were linked to higher AYA TRAQ scores. CONCLUSIONS: Transition readiness in AYA patients as measured by TRAQ is associated with female gender, older age, and higher patient activation. Though gender and age are non-modifiable, interventions to boost patient activation represent a promising opportunity to improve transition readiness and outcomes. This article is protected by copyright. All rights reserved.

10.
Trials ; 19(1): 204, 2018 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-29587864

RESUMO

BACKGROUND: Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a reduction in disease flares and the risk of re-fracture in osteoporosis, and the slowing of disease progression in RA. However, medication adherence remains suboptimal, as treatment regimens can be complex and difficult to continue long term. Many trials have been conducted to improve adherence to medication. Core domains, which are the outcomes of most relevance to patients and clinicians, are a pivotal component of any trial. These core domains should be measured consistently, so that all relevant trials can be combined in systematic reviews and meta-analyses to reach conclusions that are more valid. Failure to do this severely limits the potential for trial-based evidence to inform decisions on how to support medication adherence. The Outcome Measures in Rheumatology (OMERACT) - Interventions for Medication Adherence study by the OMERACT-Adherence Group aims to develop a core domain set for interventions that aim to support medication adherence in rheumatology. METHODS/DESIGN: This OMERACT-Adherence study has five phases: (1) a systematic review to identify outcome domains that have been reported in interventions focused on supporting medication adherence in rheumatology; (2) semi-structured stakeholder interviews with patients and caregivers to determine their views on the core domains; (3) focus groups using the nominal group technique with patients and caregivers to identify and rank domains that are relevant to them, including the reasons for their choices; (4) an international three-round modified Delphi survey involving patients with diverse rheumatic conditions, caregivers, health professionals, researchers and other stakeholders to develop a preliminary core domain set; and (5) a stakeholder workshop with OMERACT members to review, vote on and reach a consensus on the core domain set for interventions to support medication adherence in rheumatology. DISCUSSION: Establishing a core domain set to be reported in all intervention studies undertaken to support patients with medication adherence will enhance the relevance and the impact of these results and improve the lives of people with rheumatic conditions.

11.
J Rheumatol ; 44(10): 1544-1550, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28765239

RESUMO

OBJECTIVE: The aim of this Outcome Measures in Rheumatology (OMERACT) Working Group was to determine the core set of outcome domains and subdomains for measuring the effectiveness of shared decision-making (SDM) interventions in rheumatology clinical trials. METHODS: Following the OMERACT Filter 2.0, and based on a previous literature review of SDM outcome domains and a nominal group process at OMERACT 2014, (1) an online Delphi survey was conducted to gather feedback on the draft core set and refine its domains and subdomains, and (2) a workshop was held at the OMERACT 2016 meeting to gain consensus on the draft core set. RESULTS: A total of 170 participants completed Round 1 of the Delphi survey, and 116 completed Round 2. Respondents came from 29 countries, with 49% being patients/caregivers. Results showed that 14 out of the 17 subdomains within the 7 domains exceeded the 70% criterion (endorsement ranged from 83% to 100% of respondents). At OMERACT 2016, only 8% of the 96 attendees were patients/caregivers. Despite initial votes of support in breakout groups, there was insufficient comfort about the conceptualization of these 7 domains and 17 subdomains for these to be endorsed at OMERACT 2016 (endorsement ranged from 17% to 68% of participants). CONCLUSION: Differences between the Delphi survey and consensus meeting may be explained by the manner in which the outcomes were presented, variations in participant characteristics, and the context of voting. Further efforts are needed to address the limited understanding of SDM and its outcomes among OMERACT participants.


Assuntos
Tomada de Decisões , Doenças Reumáticas/terapia , Reumatologia , Consenso , Gerenciamento Clínico , Humanos
12.
J Rheumatol ; 44(11): 1750-1753, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28365574

RESUMO

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group has been working toward developing a data-driven core set of outcome measures for use in clinical trials of Behçet's syndrome [Behçet disease (BD)]. This paper summarizes the group's work through OMERACT 2016, discussions during the meeting, and the future research agenda. METHODS: Qualitative patient interviews were conducted among 20 patients with BD who have different types of organ involvement. A 3-round Delphi among BD experts and patients was initiated to identify domains, subdomains, and outcomes to be assessed in clinical trials of BD. The results of these studies were discussed during OMERACT 2016 and next steps were planned. RESULTS: Patients' perspectives and priorities were identified through qualitative interviews that identified candidate domains and subdomains for inclusion in the Delphi and characterized some shortcomings of the currently used patient-reported outcomes in BD. The first round of the Delphi was completed and several domains or subdomains were endorsed by the experts and/or the patients. Because many more items were endorsed than would be feasible to assess during a clinical trial, rating and ranking of items by physicians and patients was planned as a next critical step. The challenges of assessing specific organ system involvement was also discussed. CONCLUSION: The OMERACT Behçet Syndrome Working Group research program will identify core domains for assessment in BD with the goal of developing a core set of outcome measures for use in all trials of BD with the option to incorporate additional outcomes for specific organ involvement.


Assuntos
Síndrome de Behçet/terapia , Avaliação de Resultados (Cuidados de Saúde) , Adulto , Síndrome de Behçet/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença
13.
Clin J Am Soc Nephrol ; 12(5): 825-835, 2017 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-27821390

RESUMO

SLE is a chronic inflammatory disease that affects the kidneys in about 50% of patients. Lupus nephritis is a major risk factor for overall morbidity and mortality in SLE, and despite potent anti-inflammatory and immunosuppressive therapies still ends in CKD or ESRD for too many patients. This review highlights recent updates in our understanding of disease epidemiology, genetics, pathogenesis, and treatment in an effort to establish a framework for lupus nephritis management that is patient-specific and oriented toward maintaining long-term kidney function in patients with lupus.


Assuntos
Falência Renal Crônica , Rim , Nefrite Lúpica , Biópsia , Progressão da Doença , Predisposição Genética para Doença , Humanos , Rim/patologia , Rim/fisiopatologia , Falência Renal Crônica/epidemiologia , Nefrite Lúpica/epidemiologia , Nefrite Lúpica/genética , Nefrite Lúpica/fisiopatologia , Nefrite Lúpica/terapia , Fenótipo , Valor Preditivo dos Testes , Prognóstico , Fatores de Risco
15.
J Rheumatol ; 42(12): 2465-9, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26077399

RESUMO

OBJECTIVE: The rarity of large vessel vasculitis (LVV) is a major factor limiting randomized controlled trials in LVV, resulting in treatment choices in these diseases that are guided mainly by observational studies and expert opinion. Further complicating trials in LVV is the absence of validated and meaningful outcome measures. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group initiated the Large Vessel Vasculitis task force in 2009 to develop data-driven, validated outcome tools for clinical investigation in LVV. This report summarizes the progress that has been made on a disease activity assessment tool and patient-reported outcomes in LVV as well as the group's research agenda. METHODS: The OMERACT LVV task force brought an international group of investigators and patient research partners together to work collaboratively on developing outcome tools. The group initially focused on disease activity assessment tools in LVV. Following a systematic literature review, an international Delphi exercise was conducted to obtain expert opinion on principles and domains for disease assessment. The OMERACT vasculitis working group's LVV task force is also conducting qualitative research with patients, including interviews, focus groups, and engaging patients as research partners, all to ensure that the approach to disease assessment includes measures of patients' perspectives and that patients have input into the research agenda and process. RESULTS: The preliminary results of both the Delphi exercise and the qualitative interviews were discussed at the OMERACT 12 (2014) meeting and the completion of the analyses will produce an initial set of domains and instruments to form the basis of next steps in the research agenda. CONCLUSION: The research agenda continues to evolve, with the ultimate goal of developing an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV.


Assuntos
Arterite de Células Gigantes/terapia , Avaliação de Resultados (Cuidados de Saúde) , Pesquisa Qualitativa , Arterite de Takayasu/terapia , Conferências de Consenso como Assunto , Técnica Delfos , Feminino , Grupos Focais , Arterite de Células Gigantes/diagnóstico por imagem , Humanos , Masculino , Guias de Prática Clínica como Assunto , Radiografia , Índice de Gravidade de Doença , Arterite de Takayasu/diagnóstico por imagem , Vasculite/diagnóstico por imagem , Vasculite/epidemiologia , Vasculite/terapia
16.
Pain Med ; 14 Suppl 1: S3-10, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24373108

RESUMO

OBJECTIVE: Non-steroidal anti-inflammatory drugs (NSAIDs) are some of the most commonly used medications due to their well-known analgesic, anti-inflammatory, and antipyretic actions. Due to their known benefits and inherent risks, there have been multiple guidelines from national professional societies that suggest appropriate use to provide both maximum benefit and mitigate risk of adverse events, particularly in older individuals. DESIGN: A literature search was undertaken using PubMed and search terms including pain, aging, treatment, non-steroidal anti-inflammatory drugs, arthritis, older patient, and guidelines. Practice guideline reviews were conducted from the following sources: American Geriatric Society, American College of Rheumatology, and the European League Against Rheumatism suggesting the appropriate and safer use of NSAIDs, along with references to guidelines product by Osteoarthritis Research International, the American Gastroenterological Association. CONCLUSIONS: Literature-based and professional society guidelines provides clinicians with means optimize efficacy and safety of NSAIDs in clinical practice. Summary recommendations are provided in this review.


Assuntos
Anti-Inflamatórios não Esteroides/uso terapêutico , Anti-Inflamatórios não Esteroides/efeitos adversos , Anti-Inflamatórios não Esteroides/farmacologia , Dor Crônica/tratamento farmacológico , Interações de Medicamentos , Gastroenteropatias/induzido quimicamente , Gota/tratamento farmacológico , Guias como Assunto , Cardiopatias/induzido quimicamente , Humanos , Nefropatias/induzido quimicamente , Dor Musculoesquelética/tratamento farmacológico , Osteoartrite/tratamento farmacológico
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