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1.
Am J Kidney Dis ; 72(2): 198-204, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29395483

RESUMO

BACKGROUND: This study evaluated 1-year linear trajectories of patient-reported dimensions of quality of life among patients receiving dialysis. STUDY DESIGN: Longitudinal observational study. SETTING & PARTICIPANTS: 227 patients recruited from 12 dialysis centers. FACTORS: Sociodemographic and clinical characteristics. MEASUREMENTS/OUTCOMES: Participants completed an hour-long interview monthly for 12 months. Each interview included patient-reported outcome measures of overall symptoms (Edmonton Symptom Assessment System), physical functioning (Activities of Daily Living/Instrumental Activities of Daily Living), cognitive functioning (Patient's Assessment of Own Functioning Inventory), emotional well-being (Center for Epidemiologic Studies Depression Scale, State Anxiety Inventory, and Positive and Negative Affect Schedule), and spiritual well-being (Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale). For each dimension, linear and generalized linear mixed-effects models were used. Linear trajectories of the 5 dimensions were jointly modeled as a multivariate outcome over time. RESULTS: Although dimension scores fluctuated greatly from month to month, overall symptoms, cognitive functioning, emotional well-being, and spiritual well-being improved over time. Older compared with younger participants reported higher scores across all dimensions (all P<0.05). Higher comorbidity scores were associated with worse scores in most dimensions (all P<0.01). Nonwhite participants reported better spiritual well-being compared with their white counterparts (P<0.01). Clustering analysis of dimension scores revealed 2 distinctive clusters. Cluster 1 was characterized by better scores than those of cluster 2 in nearly all dimensions at baseline and by gradual improvement over time. LIMITATIONS: Study was conducted in a single region of the United States and included mostly patients with high levels of function across the dimensions of quality of life studied. CONCLUSIONS: Multidimensional patient-reported quality of life varies widely from month to month regardless of whether overall trajectories improve or worsen over time. Additional research is needed to identify the best approaches to incorporate patient-reported outcome measures into dialysis care.


Assuntos
Cognição/fisiologia , Emoções , Exercício Físico/psicologia , Qualidade de Vida/psicologia , Diálise Renal/psicologia , Terapias Espirituais/psicologia , Atividades Cotidianas/psicologia , Estudos de Coortes , Emoções/fisiologia , Exercício Físico/fisiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Diálise Renal/tendências , Terapias Espirituais/tendências , Fatores de Tempo
2.
Palliat Med ; 31(3): 267-274, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-27272317

RESUMO

BACKGROUND: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients. AIM: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites. DESIGN: Qualitative interviews and thematic analysis. SETTING/PARTICIPANTS: 24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient's Illness Representations to Increase Trust). RESULTS: Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT's impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient's illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT's impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites. CONCLUSION: Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates' perspectives.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas/psicologia , Negro ou Afro-Americano/psicologia , Falência Renal Crônica/terapia , Procurador/psicologia , Diálise Renal/psicologia , Assistência Terminal/psicologia , População Branca/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
3.
Res Nurs Health ; 39(4): 263-76, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-27177093

RESUMO

Dysmenorrhea is highly prevalent and is the leading cause of work and school absences among women of reproductive age. However, self-management of dysmenorrhea is not well understood in the US, and little evidence is available on factors that influence dysmenorrhea self-management. Guided by the Common Sense Model, we examined women's representations of dysmenorrhea (beliefs about causes, symptoms, consequences, timeline, controllability, coherence, and emotional responses), described their dysmenorrhea self-management behaviors, and investigated the relationship between representations and self-management behaviors. We conducted a cross-sectional, web-based survey of 762 adult women who had dysmenorrhea symptoms in the last six months. Participants had varied beliefs about the causes of their dysmenorrhea symptoms, which were perceived as a normal part of life. Dysmenorrhea symptoms were reported as moderately severe, with consequences that moderately affected daily life. Women believed they understood their symptoms moderately well and perceived them as moderately controllable but them to continue through menopause. Most women did not seek professional care but rather used a variety of pharmacologic and complementary health approaches. Care-seeking and use of self-management strategies were associated with common sense beliefs about dysmenorrhea cause, consequences, timeline, and controllability. The findings may inform development and testing of self-management interventions that address dysmenorrhea representations and facilitate evidence-based management. © 2016 Wiley Periodicals, Inc.


Assuntos
Dismenorreia/psicologia , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Autocuidado/psicologia , Adulto , Estudos Transversais , Dismenorreia/prevenção & controle , Feminino , Humanos , Inquéritos e Questionários
4.
Nurs Outlook ; 64(4): 299-305, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27264454

RESUMO

Sequential multiple randomization trial (SMART) designs are experimental designs used to identify treatment strategies that maximize targeted health outcomes. SMART designs are receiving greater attention in nursing and other health disciplines to develop multicomponent interventions that are tailored to the patient's (or family caregiver's) needs and preferences. A SMART design resembles a traditional randomized controlled trial (RCT) design in that it scientifically examines intervention effects with randomization. However, the two designs address very different research inquiries. In this article, we compare traditional RCT designs and SMART designs, describe the adaptive treatment framework that underlies SMART designs and key features of SMART designs, and illustrate the application of a SMART design to develop an adaptive palliative care treatment to improve patient and caregiver outcomes.


Assuntos
Enfermagem Familiar/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Pesquisa em Enfermagem/métodos , Assistência Centrada no Paciente/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Projetos de Pesquisa , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
5.
Am J Kidney Dis ; 66(5): 813-22, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26141307

RESUMO

BACKGROUND: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. STUDY DESIGN: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. SETTING & PARTICIPANTS: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. INTERVENTION: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. PRIMARY OUTCOMES: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. SECONDARY OUTCOMES: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. PRIMARY OUTCOMES: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (ß=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (ß=-0.01; 95% CI, -0.12 to 0.10). SECONDARY OUTCOMES: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (ß=-1.13; 95% CI, -2.23 to -0.03), depression (ß=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (ß=-5.75; 95% CI, -10.9 to -0.64) than controls. LIMITATIONS: Study was conducted in a single US region. CONCLUSIONS: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisões , Falência Renal Crônica/terapia , Participação do Paciente/psicologia , Procurador/psicologia , Diálise Renal , Assistência Terminal/métodos , Adulto , Idoso , Ansiedade/psicologia , Luto , Conflito Psicológico , Depressão/psicologia , Feminino , Humanos , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente , Método Simples-Cego , Transtornos de Estresse Pós-Traumáticos/psicologia , Assistência Terminal/psicologia
6.
J Nurs Scholarsh ; 47(5): 389-96, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26219616

RESUMO

PURPOSE: In reports of end-of-life communication interventions, it is difficult to find sufficient detail about the intervention to allow replication, extension, and translation into practice. The purpose of this article is to provide details about a theory-guided advance care planning intervention, sharing the patient's illness representations to increase trust (SPIRIT), an intervention that has been shown to be efficacious for patients and their surrogates with respect to preparation for end-of-life decision making. METHODS AND DESIGN: The description of SPIRIT is based on an intervention description checklist by Conn (2012), the Intervention Taxonomy from Schulz, Czaja, McKay, Ory, and Belle (2010) and on relevant segments of Consolidated Standards of Reporting Trials. DISCUSSION: The SPIRIT intervention was developed based on sound theoretical underpinnings and pilot tested with target patient populations and racial or ethnic groups. We describe details about the intervention's theoretical basis, requisite intervener training, implementation of each intervention component, and fidelity monitoring. CLINICAL RELEVANCE: The details about the components of a theory-guided advance care planning intervention may facilitate translation of the intervention to practice settings.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal/métodos , Planejamento Antecipado de Cuidados/normas , Comunicação , Tomada de Decisões , Humanos , Relações Profissional-Paciente , Confiança
7.
Pain Manag Nurs ; 16(3): 198-210, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25439117

RESUMO

Despite available guidelines and efforts to improve pain management, pain remains prevalent in hospitals. The aim of this study was to explore whether pain management practices in a university hospital were in line with guidelines on acute, geriatric, and cancer pain. This was a descriptive, correlational, and point-prevalence study conducted at a university hospital with 282 adults, who were hospitalized for 24 hours and were alert and able to participate. Patient self-report data were collected with the American Pain Society questionnaire and pain management data were collected from medical records. Adequacy of treatment was measured with the Pain Management Index, calculated for prescribed and administered treatments. The mean age of participants was 68.9 years (SD = 17; range 18-100); 49% were women; and 72% were on medical services. Pain assessment was documented for 57% of patients, of those, 27% had pain severity documented with a standardized scale. Most patients (85%) were prescribed analgesics and multimodal therapy was prescribed for 60%. Prescribed treatment was adequate for 78% of patients, whereas 64% were administered adequate treatment. The odds of receiving adequate treatment were higher (odds ratio, 3.44; 95% confidence interval, 1.38-8.60) when pain severity was documented. Nonpharmacologic methods were used by 34% of patients. Although the majority of patients had an analgesic prescription, many did not receive adequate treatment. The use of pain severity scales was associated with the provision of more adequate pain treatment. To provide quality pain management, pain assessment needs to be improved and available treatments used to meet patient needs.


Assuntos
Manejo da Dor/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Analgésicos/uso terapêutico , Terapia Combinada/enfermagem , Feminino , Hospitalização , Hospitais Universitários , Humanos , Islândia , Masculino , Pessoa de Meia-Idade , Dor/enfermagem , Dor/prevenção & controle , Manejo da Dor/enfermagem , Medição da Dor/enfermagem , Medição da Dor/normas , Qualidade da Assistência à Saúde , Autorrelato , Adulto Jovem
8.
Res Nurs Health ; 38(3): 241-7, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25728502

RESUMO

Baseline assessments and repeated measures are an essential part of educational and psychosocial intervention trials, but merely measuring an outcome of interest can modify that outcome, either by the measurement process alone or by interacting with the intervention to strengthen or weaken the intervention effects. Assessment effects can result in biased estimates of intervention effects and may not be controlled by the usual two-group randomized controlled trial design. In this paper, we review the concept of assessment effects and other related phenomena, briefly describe study designs that estimate assessment effects separately from intervention effects and discuss their strengths and limitations, review evidence regarding the strength of assessment effects in intervention trials targeting behavior change, and discuss implications for intervention research.


Assuntos
Ensaios Clínicos Controlados como Assunto , Interpretação Estatística de Dados , Educação de Pacientes como Assunto/métodos , Ensaios Clínicos Controlados como Assunto/métodos , Comportamentos Relacionados com a Saúde , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Projetos de Pesquisa , Comportamento de Redução do Risco
9.
Pain Pract ; 15(3): 236-46, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24433333

RESUMO

BACKGROUND: Pain management is a crucial issue for patients, and patients' perception of care is an important quality outcome criterion for health care institutions. Pain remains a common problem in hospitals, with subsequent deleterious effects on well-being. OBJECTIVES: To assess the epidemiology of pain (frequency, severity, and interference), patient participation in pain treatment decisions, and patient satisfaction with care in a hospital setting. METHODS: A point-prevalence study was conducted. Data were collected with the American Pain Society Patient Outcome Questionnaire (Icelandic version). Participants (n = 308) were ≥ 18 years old, alert, and hospitalized for ≥ 24 hours. RESULTS: The response rate was 73%. The mean age of participants was 67.5 (SD = 17.4; range 18 to 100) years, and 49% were men. Pain prevalence in the past 24 hours was 83%, mean worst pain severity was 4.6 (SD = 3.1), and 35% experienced severe pain (≥ 7 on 0 to 10 scale). Moderate to severe interference with activities and sleep was experienced by 36% and 29% of patients respectively. Patient participation in decision making was weakly associated with spending less time in severe pain and better pain relief. Patient satisfaction was related to spending less time in severe pain, better pain relief, and lower pain severity (P < 0.05). CONCLUSIONS: Pain was both prevalent and severe in the hospital, but patient participation in decision making was related to better outcomes. Optimal pain management, with emphasis on patient participation in decision making, should be encouraged in an effort to improve the quality of care in hospitals.


Assuntos
Hospitalização , Manejo da Dor/normas , Dor/epidemiologia , Participação do Paciente , Satisfação do Paciente , Qualidade da Assistência à Saúde , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Humanos , Islândia/epidemiologia , Masculino , Pessoa de Meia-Idade , Medição da Dor , Prevalência , Inquéritos e Questionários , Adulto Jovem
10.
J Pain Symptom Manage ; 67(6): 571-579.e2, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38514021

RESUMO

CONTEXT: Whether a largescale disaster alters people's previous decisions about their end-of-life care is unknown. OBJECTIVES: We examined the effects of a disaster, the COVID-19 pandemic, on stability of end-of-life care preferences among dialysis patients and on patient-surrogate goals-of-care congruence. METHODS: We used a natural experimental design to examine goals-of-care preferences pre- and postexposure to the pandemic during a pragmatic trial testing SPIRIT (sharing patient's illness representations to increase trust), an evidence-based advance care planning (ACP) intervention. There were 151 patient-surrogate dyads who prior to the pandemic lockdown had completed baseline (T1) and postintervention assessments (T2) regarding their goals-of-care preferences in two end-of-life scenarios. Of those 151 dyads, 59 intervention, and 51 usual care dyads consented to be in the present study and completed the goals-of-care tool two additional times, at enrollment (T3) and six months later (T4), along with the COVID stress scale (CSS). Dyad congruence was ascertained by comparing patient and surrogate responses to the goals-of-care tool. RESULTS: There were no changes over time in the proportions of patients who chose comfort-care-only in the goals-of-care tool. The proportion of patients who chose comfort-care-only and dyad congruence were higher in SPIRIT compared to usual care, but there was no interaction between that treatment effect and exposure to the pandemic. CSS was associated with neither patients' preferences nor dyad congruence. CONCLUSIONS: The pandemic alone did not appear to influence patients' goals-of-care preferences or dyad congruence. This finding supports the stability of value-based end-of-life preferences in general, even during a disaster.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , Preferência do Paciente , Assistência Terminal , Humanos , COVID-19/psicologia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Pandemias , Adulto
11.
J Pain Symptom Manage ; 67(5): 429-440.e2, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38355069

RESUMO

CONTEXT: Reliable and valid measures are critical in accurately assessing outcomes of advance care planning interventions (ACP) for end-of-life (EOL) decision-making. OBJECTIVES: To develop measures of preparedness for EOL decision-making for patients with end-stage renal disease and their surrogates (an exemplar population). METHODS: In this 3-phase study, Phases 1 and 2 included a cross-discipline concept analysis of the preparedness construct, item generation for patient and surrogate scales (82 items), evaluation of content validity and readability, cognitive interviewing, and item reduction. In phase 3, the retained 26 patient and 25 surrogate items were administered to 426 patients and 426 surrogates during a multisite trial of an ACP intervention versus care-as-usual and evaluated internal consistency, 2-week test-retest reliability, and construct validity. RESULTS: Scales were reduced to 20 patient and 19 surrogate items during phase 3. Cronbach's alphas were 0.86 (patient) and 0.90 (surrogate). There was a strong correlation between preparedness at baseline and two weeks for both scales (r = 0.66-0.69, P < 0.001). Confirmatory factor analysis and item-response analyses suggested unidimensionality. A significant correlation was shown between patient preparedness and patient decisional conflict (r = -0.53, P < 0.001), and surrogate preparedness and surrogate decision-making confidence (r = 0.44, P < 0.001). Among those who received the ACP intervention, the effect size of change was medium: Cohen's d = 0.54, P < 0.001 for patients and d = 0.57, P < 0.001 for surrogates. CONCLUSIONS: The preparedness scales demonstrated strong psychometric properties. Future studies should examine scale performance in other populations.


Assuntos
Planejamento Antecipado de Cuidados , Falência Renal Crônica , Humanos , Tomada de Decisões , Reprodutibilidade dos Testes , Morte , Psicometria
12.
JAMA Netw Open ; 7(1): e2351511, 2024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-38289604

RESUMO

Importance: Evidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed. Objectives: To test the effectiveness of an ACP intervention to prepare patients and their surrogates for end-of-life (EOL) decision-making and to improve surrogate bereavement outcomes. Design, Setting, and Participants: This cluster randomized clinical trial, An Effectiveness-Implementation Trial of SPIRIT (Sharing Patients' Illness Representations to Increase Trust) in ESRD, was conducted from December 2017 to March 2023 and included 42 dialysis clinics in 5 US states (Georgia, New Mexico, North Carolina, Pennsylvania, and Virginia) randomized to provide intervention or usual care. Recruitment was from February 15, 2018, to January 31, 2022, and patient-surrogate dyads were followed up for 21 months (until January 17, 2023) or until patient death. Intervention: Each clinic selected 1 or 2 health care workers (eg, nurse practitioner, registered nurse, or social worker) to conduct 45- to 60-minute ACP discussions with dyads in the clinic or remotely. After March 13, 2020 (commencement of the COVID-19 emergency declaration), all discussions were conducted remotely. An ACP summary was placed in patients' medical records. Main Outcomes and Measures: The primary, 2-week preparedness outcomes were dyad congruence on EOL goals of care, patient decisional conflict, surrogate decision-making confidence, and a composite of dyad congruence and surrogate decision-making confidence. Secondary bereavement outcomes were anxiety, depression, and posttraumatic distress 3 months after patient death. To adjust for COVID-19 pandemic effects on bereavement outcomes, a variable to indicate the timing of baseline and 3-month assessment relative to the COVID-19 emergency declaration was created. Results: Of the 426 dyads enrolled, 231 were in the intervention clinics, and 195 were in the control clinics. Among all dyads, the mean (SD) patient age was 61.9 (12.7) years, and the mean (SD) surrogate age was 53.7 (15.4) years. At 2 weeks, after adjusting for baseline values, dyad congruence (odds ratio [OR], 1.61; 95% CI, 1.12-2.31; P = .001), decisional conflict scores (ß, -0.10; 95% CI, -0.13 to -0.07; P < .001), and the composite (OR, 1.57; 95% CI, 1.06-2.34; P = .03) were higher in the intervention group than in the control group. Surrogate decision-making confidence was similar between groups (ß, 0.06; 95% CI, -0.01 to 0.13; P = .12). Among 77 bereaved surrogates, after adjusting for baseline values and assessment timing, intervention group anxiety was lower than control group anxiety (ß, -1.55; 95% CI, -3.08 to -0.01; P = .05); however, depression (ß, -0.18; 95% CI, -2.09 to 1.73; P = .84) and posttraumatic distress (ß, -0.96; 95% CI, -7.39 to 5.46; P = .75) were similar. Conclusions and Relevance: In this randomized clinical trial, the ACP intervention implemented by health care workers at dialysis centers improved preparation for EOL decision-making but showed mixed effectiveness on bereavement outcomes. The ACP intervention implemented in dialysis centers may be an effective strategy to the dyad preparation for end-of-life care as opposed to the current focus on advance directives. Trial Registration: ClinicalTrials.gov Identifier: NCT03138564.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , Adulto , Humanos , Pessoa de Meia-Idade , Diálise Renal , Pandemias , Morte , Instituições de Assistência Ambulatorial , COVID-19/epidemiologia
13.
Nephrol Dial Transplant ; 28(11): 2815-23, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23901048

RESUMO

BACKGROUND: Careful patient-clinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made. METHODS: Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were examined with content analysis. In addition, informed decision-making (IDM) scores were created by summing patient responses (yes/no) to 10 questions about the decision-making. RESULTS: The mean IDM score was 4.4 (of 10; SD = 2.0); 67% scored 5 or lower. Age at the time of decision-making (r = -0.27, P = 0.006), years of education (r = 0.24, P = 0.02) and presence of a warning about progressing to end-stage kidney disease (t = 2.9, P = 0.005) were significantly associated with IDM scores. Nearly 70% said that the risks and burdens of dialysis were not mentioned at all, and only one patient recalled that the doctor offered the option of not starting dialysis. While a majority (67%) said that they felt they had no choice about starting dialysis (because the alternative would be death) or about dialysis modality, only 21.2% said that they had felt rushed to make a decision. About one-third of the patients perceived that the decision to start dialysis and modality was already made by the doctor. CONCLUSIONS: A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process.


Assuntos
Comportamento de Escolha , Tomada de Decisões , Falência Renal Crônica/terapia , Diálise Renal , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Humanos , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Prognóstico , Autocuidado , Adulto Jovem
14.
Palliat Med ; 27(8): 789-92, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23376786

RESUMO

BACKGROUND: The role played by emergency contacts can be extensive particularly for chronically seriously ill patients. If the patient's condition suddenly deteriorates, the emergency contact may be asked to make decisions that should instead fall to a designated surrogate decision-maker. AIMS: To describe a process used to help chronically seriously ill patients identify a surrogate during study enrollment and to describe whether these surrogates were the same as the documented emergency contacts. DESIGN: A descriptive cross-sectional study using eligibility assessment and baseline data from an efficacy trial. The parent trial tests the effects of an end-of-life communication intervention on patient and surrogate decision-maker outcomes, and thus, it was important to identify the surrogate. The study recruiter used a short battery of investigator-developed questions to help patients identify a surrogate. SETTING/PARTICIPANTS: Patients were 94 self-identified African Americans or Caucasians recruited from 18 outpatient dialysis centers, receiving dialysis for ≥6 months, with Charlson Comorbidity Index of ≥6 or 5 and hospitalized in the last 6 months. RESULTS: When first approached, only three patients had a designated and documented surrogate. The remaining 91 selected a surrogate during the surrogate identification process. Of the 94 surrogates who were named, only 60 (63.8%) were also listed in the medical record as the emergency contact. CONCLUSIONS: In roughly one-third of instances, the selected surrogate was not the same person listed in official medical records as the emergency contact, which may pose potential problems in medical decision-making in the absence of advance directives.


Assuntos
Planejamento Antecipado de Cuidados/tendências , Diretivas Antecipadas/tendências , Cuidados Críticos , Tomada de Decisões , Planejamento Antecipado de Cuidados/organização & administração , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
15.
Nurs Res ; 62(1): 45-9, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23114795

RESUMO

BACKGROUND: Use of composite variables is a common practice, but knowledge about what researchers should consider when creating composite variables is lacking. OBJECTIVE: The purpose of this paper was to present methods used to create composite variables with attention to advantages and disadvantages. METHODS: Methods of simple averaging, weighted averaging, and meaningful grouping to create composite variables are described briefly, and the context in which one method might be more suitable than the others is discussed. Study examples and comparisons of statistical power among these methods as well as Bonferroni correction are described. DISCUSSION: Each approach to creating composite variables has advantages and disadvantages that researchers should weigh carefully. With normally distributed data, composite variables provide the greatest increases in power when the original variables (that make up the composite variable) have similar associations with the outside outcome variable.


Assuntos
Viés , Pesquisa em Enfermagem , Projetos de Pesquisa , Análise de Variância , Humanos , Análise de Componente Principal , Valores de Referência
16.
J Clin Oncol ; 40(13): 1464-1473, 2022 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-35130043

RESUMO

PURPOSE: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL). METHODS: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study. Participants completed baseline (BL) surveys (symptom burden and controllability and QOL) before random assignment. WRITE interventions lasted 8 weeks to develop symptom management plans for three target symptoms. All women received EUC: monthly online symptom assessment with provider reports; online resources; and every 2-week e-mails. Outcomes were evaluated at 8 and 12 weeks after BL. Repeated-measures modeling with linear contrasts evaluated group by time effects on symptom burden, controllability, and QOL, controlling for key covariates. RESULTS: Participants (N = 497) reported mean age of 59.3 ± 9.2 years. At BL, 84% were receiving chemotherapy and reported a mean of 14.2 ± 4.9 concurrent symptoms, most commonly fatigue, constipation, and peripheral neuropathy. Symptom burden and QOL improved significantly over time (P < .001) for all three groups. A group by time interaction (P < .001) for symptom controllability was noted whereby both WRITE intervention groups had similar improvements from BL to 8 and 12 weeks, whereas EUC did not improve over time. CONCLUSION: Both WRITE Intervention groups showed significantly greater improvements in symptom controllability from BL to 8 and BL to 12 weeks compared with EUC. There were no significant differences between Nurse-WRITE and SD-WRITE. SD-WRITE has potential as a scalable intervention for a future implementation study.


Assuntos
Neoplasias Ovarianas , Qualidade de Vida , Idoso , Carcinoma Epitelial do Ovário , Fadiga , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/tratamento farmacológico , Cuidados Paliativos , Avaliação de Sintomas
17.
Nurs Res ; 60(1): 73-9, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21127448

RESUMO

BACKGROUND: Latent transition analysis is a method of modeling change over time in categorical variables. It has been used in the social sciences for many years, but not in nursing research. OBJECTIVE: The purposes of this study were to illustrate the utility of latent transition analysis for nursing research by presenting a case example (a secondary analysis of data from a previously conducted randomized control trial testing the effectiveness of a tailored psychoeducational intervention to decrease patient-related attitudinal barriers to cancer pain management) and to understand for whom and in what direction the tailored intervention resulted in change with respect to attitudinal barriers and pain symptoms. METHODS: The model was developed by (a) defining a class structure on the basis of individuals' barrier patterns, (b) adding demographic predictors and distal pain outcomes, and (c) modeling and testing transitions across classes. RESULTS: There were two classes of individuals: Low Barriers and High Barriers. Older, less educated individuals were more likely to be in the High Barriers class at Time 1. Individuals in either class did not have different pain outcomes at the end of the study. Of those individuals that transitioned across classes, those who received the intervention were statistically more likely to move in a favorable direction (to the Low Barriers class). Furthermore, there is evidence that some individuals in the control group had unfavorable outcomes. DISCUSSION: The results from the example provide useful information about for whom and in what direction the intervention resulted in change. Latent transition analysis is a valuable procedure for nurse researchers because it collapses large arrays of categorical data into meaningful patterns. It is a flexible modeling procedure with extensions allowing further understanding of a change process.


Assuntos
Interpretação Estatística de Dados , Estudos Longitudinais , Modelos Estatísticos , Pesquisa em Avaliação de Enfermagem/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Teorema de Bayes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Dor/etiologia , Dor/prevenção & controle , Dor/psicologia , Planejamento de Assistência ao Paciente , Educação de Pacientes como Assunto , Ensaios Clínicos Controlados Aleatórios como Assunto , Projetos de Pesquisa , Ciências Sociais , Fatores de Tempo
18.
Pain ; 162(6): 1840-1847, 2021 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-33337597

RESUMO

ABSTRACT: Patient fear of addiction is a well-documented barrier to the use of analgesic medications for cancer pain control. Over the past 2 decades in the United States, an "opioid crisis" has arisen, accompanied by risk messages delivered through news outlets, public health education, and patient-provider communication. The purpose of this study was to determine if patient-related barriers to cancer pain management-specifically, fears of addiction-and related pain outcomes (pain severity, pain interference with daily life, and adequacy of pain management) have worsened over the last 20 years. A sample of 157 outpatients with active recurrent or active metastatic cancer completed the Barriers Questionnaire-II (BQ-II) and measures of pain and analgesic use. We identified 7 comparison studies published between 2002 and 2020 that reported patient-related barriers using the BQ-II. Significant linear relationships were found between later year of publication and greater fear of addiction (harmful effect subscale score, B = 0.0350, R2 = 0.0347, F1,637 = 23.19, P < 0.0001) and between year of publication and more pain management barriers overall (total BQ-II score, B = 0.039, R2 = 0.065, F1,923 = 73.79, P < 0.0001). Relationships between BQ-II scores (harmful effect and total) and pain outcomes did not change over time. Despite worsening in patient-related barriers, the proportion of patients with adequate vs inadequate analgesic use did not differ over time. Notably, 40% of participants reported inadequate analgesic use, a statistic that has not improved in 20 years. Additional research is necessary to clarify factors contributing to changing beliefs. Findings indicate a continuing need for clinical and possibly system/policy-level interventions to support adequate cancer pain management.


Assuntos
Dor do Câncer , Neoplasias , Analgésicos/uso terapêutico , Dor do Câncer/tratamento farmacológico , Humanos , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Epidemia de Opioides , Dor/tratamento farmacológico , Dor/etiologia , Manejo da Dor
19.
Nurs Res ; 59(4): 288-94, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20467337

RESUMO

BACKGROUND: R. M. Baron and D. A. Kenny (1986) defined mediation and described how to perform statistical tests of mediation hypotheses. Their approach to testing mediation has been used extensively in the nursing literature. However, many statisticians have identified problems with the Baron and Kenny approach. PURPOSE: The aim of this paper is to critically evaluate alternative approaches to testing mediation. APPROACH: The Baron and Kenny approach and its shortcomings are briefly reviewed. A critical analysis of 17 alternate methods in three categories is then presented: (a)causal steps, (b) difference in coefficients, and (c) product of coefficients. The evaluation focuses on Type I error rate control, power, ease of computation, and versatility of use. RESULTS: Of the methods that control Type I error rate adequately, the joint significance test of [alpha] and [beta], the asymmetric distribution of products test, and the test of the products using the percentile bootstrap method are the most powerful tests of mediation. Of these three, the joint significance test of [alpha] and [beta] is superior due to its computational ease and versatility of use. DISCUSSION: Knowledge development in nursing will benefit from continued research testing mediation models. Nurse researchers could move beyond the Baron and Kenny approach to utilize more robust tests of mediation.


Assuntos
Interpretação Estatística de Dados , Modificador do Efeito Epidemiológico , Modelos Estatísticos , Pesquisa em Enfermagem/métodos , Viés , Humanos , Método de Monte Carlo , Pesquisa em Enfermagem/normas , Reprodutibilidade dos Testes , Projetos de Pesquisa , Estatísticas não Paramétricas
20.
Appl Nurs Res ; 23(2): 65-72, 2010 May.
Artigo em Inglês | MEDLINE | ID: mdl-20420992

RESUMO

The prevalence of and mortality from chronic kidney disease (CKD) are high among African Americans. Interventions to improve knowledge of the likely illness course and the benefits and risks of life-sustaining treatment at the end-of-life are needed for African Americans with CKD and their surrogate decision makers. Nineteen African Americans with stage 5 CKD and their surrogates were randomized to either patient-centered advance care planning (PC-ACP) or usual care. PC-ACP dyads showed greater improvement in congruence in end-of-life treatment preferences (p < .05) and higher perceived quality of communication (p < .05) than do control dyads, but the two groups did not differ on other primary outcomes or acceptability measures, such as perceptions of cultural appropriateness. At posttest, 80% of patients in the intervention group reported that they would choose to continue all life-sustaining treatments in a situation of a low chance of survival, whereas 28.6% of patients in the control group reported that they would make that choice. At posttest, 90% of patients in the intervention group reported that they would choose to undergo cardiopulmonary resuscitation even if the chance of surviving the attempt would be low, whereas 57% of patients in the control group reported that they would make that choice. PC-ACP can be effective in improving patient and surrogate congruence in end-of-life treatment preferences. However, the results suggest a need for further improvements in the intervention to enhance cultural appropriateness for African Americans with CKD.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Negro ou Afro-Americano , Comunicação , Falência Renal Crônica/etnologia , Assistência Centrada no Paciente/organização & administração , Assistência Terminal/psicologia , Negro ou Afro-Americano/educação , Negro ou Afro-Americano/etnologia , Negro ou Afro-Americano/estatística & dados numéricos , Atitude Frente a Saúde/etnologia , Distribuição de Qui-Quadrado , Comportamento de Escolha , Competência Cultural , Estudos de Viabilidade , Feminino , Humanos , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Pesquisa em Avaliação de Enfermagem , Educação de Pacientes como Assunto/organização & administração , Pennsylvania , Projetos Piloto , Procurador/psicologia , Diálise Renal/psicologia , Estatísticas não Paramétricas
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