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1.
J Med Internet Res ; 21(11): e15459, 2019 11 27.
Artigo em Inglês | MEDLINE | ID: mdl-31774400

RESUMO

BACKGROUND: Attending to the wide range of communication behaviors that convey empathy is an important but often underemphasized concept to reduce errors in care, improve patient satisfaction, and improve cancer patient outcomes. A virtual human (VH)-based simulation, MPathic-VR, was developed to train health care providers in empathic communication with patients and in interprofessional settings and evaluated through a randomized controlled trial. OBJECTIVE: This mixed methods study aimed to investigate the differential effects of a VH-based simulation developed to train health care providers in empathic patient-provider and interprofessional communication. METHODS: We employed a mixed methods intervention design, involving a comparison of 2 quantitative measures-MPathic-VR-calculated scores and the objective structured clinical exam (OSCE) scores-with qualitative reflections by medical students about their experiences. This paper is a secondary, focused analysis of intervention arm data from the larger trial. Students at 3 medical schools in the United States (n=206) received simulation to improve empathic communication skills. We conducted analysis of variance, thematic text analysis, and merging mixed methods analysis. RESULTS: OSCE scores were significantly improved for learners in the intervention group (mean 0.806, SD 0.201) compared with the control group (mean 0.752, SD 0.198; F1,414=6.09; P=.01). Qualitative analysis revealed 3 major positive themes for the MPathic-VR group learners: gaining useful communication skills, learning awareness of nonverbal skills in addition to verbal skills, and feeling motivated to learn more about communication. Finally, the results of the mixed methods analysis indicated that most of the variation between high, middle, and lower performers was noted about nonverbal behaviors. Medium and high OSCE scorers most often commented on the importance of nonverbal communication. Themes of motivation to learn about communication were only present in middle and high scorers. CONCLUSIONS: VHs are a promising strategy for improving empathic communication in health care. Higher performers seemed most engaged to learn, particularly nonverbal skills.


Assuntos
Competência Clínica/normas , Comunicação não Verbal/fisiologia , Treinamento por Simulação/métodos , Estudantes de Medicina/psicologia , Comunicação , Feminino , Humanos , Masculino
2.
J Med Internet Res ; 19(11): e354, 2017 11 14.
Artigo em Inglês | MEDLINE | ID: mdl-29138131

RESUMO

BACKGROUND: Symptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could. OBJECTIVE: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver. METHODS: A pooled analysis from two randomized clinical trials (NCT00214162 and NCT00365963) compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only) that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-the-curve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined. RESULTS: When severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians (P<.001). Fewer symptom reports were completed in the group of caregivers whose reports went to clinicians than in the CHESS-Only group (P<.001), perhaps because caregivers, knowing their reports might be sent to a doctor, feared they might be bothering the clinician. CONCLUSIONS: This study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress. TRIAL REGISTRATION: Clinicaltrials.gov NCT00214162; https://clinicaltrials.gov/ct2/show/NCT00214162 (Archived by WebCite at http://www.webcitation.org/6nmgdGfuD) and Clinicaltrials.gov NCT00365963; https://clinicaltrials.gov/ct2/show/NCT00365963 (Archived by WebCite at http://www.webcitation.org/6nmh0U8VP).


Assuntos
Cuidadores/psicologia , Internet/estatística & dados numéricos , Neoplasias/psicologia , Telemedicina/métodos , Adulto , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Lancet Oncol ; 16(3): e137-47, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25752564

RESUMO

Supportive care and palliative care are now recognised as critical components of global cancer control programmes. Many aspects of supportive and palliative care services are already available in some low-income and middle-income countries. Full integration of supportive and palliative care into breast cancer programmes requires a systematic, resource-stratified approach. The Breast Health Global Initiative convened three expert panels to develop resource allocation recommendations for supportive and palliative care programmes in low-income and middle-income countries. Each panel focused on a specific phase of breast cancer care: during treatment, after treatment with curative intent (survivorship), and after diagnosis with metastatic disease. The panel consensus statements were published in October, 2013. This Executive Summary combines the three panels' recommendations into a single comprehensive document covering breast cancer care from diagnosis through curative treatment into survivorship, and metastatic disease and end-of-life care. The recommendations cover physical symptom management, pain management, monitoring and documentation, psychosocial and spiritual aspects of care, health professional education, and patient, family, and caregiver education.


Assuntos
Neoplasias da Mama/terapia , Prestação Integrada de Cuidados de Saúde/normas , Países em Desenvolvimento/economia , Acessibilidade aos Serviços de Saúde/normas , Renda , Cuidados Paliativos/normas , Pobreza/economia , Qualidade da Assistência à Saúde/normas , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/economia , Neoplasias da Mama/psicologia , Consenso , Prestação Integrada de Cuidados de Saúde/economia , Feminino , Acessibilidade aos Serviços de Saúde/economia , Humanos , Cuidados Paliativos/economia , Equipe de Assistência ao Paciente/economia , Equipe de Assistência ao Paciente/normas , Qualidade da Assistência à Saúde/economia
5.
J Soc Work End Life Palliat Care ; 10(4): 356-77, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25494931

RESUMO

Challenges exist in assimilating palliative care within community-based services for nursing home eligible low-income elders with complex chronic illness as they approach the end of life (EOL). This study assessed the feasibility of a consultation model, with hospice clinicians working with three Care Wisconsin Partnership Program teams. Consults occurred primarily during team meetings and also informally and on joint patient visits and were primarily with the palliative care nurse addressing physical issues. Fifty-seven percent of consultant recommendations were implemented. Benefits of consultation were identified with focus groups of clinical staff as were opportunities and barriers to the implementation. Models of integration are proposed.


Assuntos
Doença Crônica/terapia , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Assistência de Longa Duração/organização & administração , Cuidados Paliativos/organização & administração , Pobreza , Serviço Social/organização & administração , Atitude Frente a Morte , Comportamento Cooperativo , Grupos Focais , Humanos , Vida Independente , Estudos Longitudinais , Equipe de Assistência ao Paciente , Integração de Sistemas
6.
J Clin Oncol ; 42(19): 2336-2357, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38748941

RESUMO

PURPOSE: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. METHODS: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. RESULTS: The literature search identified 52 relevant studies to inform the evidence base for this guideline. RECOMMENDATIONS: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/normas , Neoplasias/terapia , Qualidade de Vida , Oncologia/normas
7.
Cancer ; 119(9): 1744-51, 2013 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-23355273

RESUMO

BACKGROUND: In this study, the authors examined the effectiveness of an online support system (Comprehensive Health Enhancement Support System [CHESS]) versus the Internet in relieving physical symptom distress in patients with non-small cell lung cancer (NSCLC). METHODS: In total, 285 informal caregiver-patient dyads were assigned randomly to receive, for up to 25 months, standard care plus training on and access to either use of the Internet and a list of Internet sites about lung cancer (the Internet arm) or CHESS (the CHESS arm). Caregivers agreed to use CHESS or the Internet and to complete bimonthly surveys; for patients, these tasks were optional. The primary endpoint-patient symptom distress-was measured by caregiver reports using a modified Edmonton Symptom Assessment Scale. RESULTS: Caregivers in the CHESS arm consistently reported lower patient physical symptom distress than caregivers in the Internet arm. Significant differences were observed at 4 months (P = .031; Cohen d = .42) and at 6 months (P = .004; d = .61). Similar but marginally significant effects were observed at 2 months (P = .051; d = .39) and at 8 months (P = .061; d = .43). Exploratory analyses indicated that survival curves did not differ significantly between the arms (log-rank P = .172), although a survival difference in an exploratory subgroup analysis suggested an avenue for further study. CONCLUSIONS: The current results indicated that an online support system may reduce patient symptom distress. The effect on survival bears further investigation.


Assuntos
Carcinoma Pulmonar de Células não Pequenas/terapia , Internet , Neoplasias Pulmonares/terapia , Cuidados Paliativos , Adulto , Idoso , Carcinoma Pulmonar de Células não Pequenas/enfermagem , Cuidadores , Humanos , Neoplasias Pulmonares/enfermagem , Pessoa de Meia-Idade
8.
Palliat Med ; 27(2): 105-14, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23104512

RESUMO

BACKGROUND: Many international governmental and nongovernmental organizations regard unrelieved cancer pain as a significant global public health problem. Although opioids such as morphine are considered essential medicines in the provision of palliative care and for treating cancer pain, especially when the pain is severe, low- and middle-income countries often lack such medications. AIM: The primary aim of this study was to examine countries' government and health-care system influences on opioid availability for cancer pain and palliative care, as a means to identify implications for improving appropriate access to prescription opioids. DESIGN: A multivariate regression of 177 countries' consumption of opioids (in milligrams/death from cancer and AIDS) contained country-level predictor variables related to public health, including Human Development Index, palliative care infrastructure, and health system resources and expenditures. RESULTS: Results were highly explanatory (adjusted R(2) = 82%) and Human Development Index was the most predictive variable when controlling for all other factors in the statistical model (B = 11.875, confidence interval = 10.216, 13.534, p < 0.0001). CONCLUSIONS: Study findings demonstrate that a limited number of predictor variables characterizing a country's government and health-care system infrastructure can explain its opioid consumption level, with the greatest influence being very high Human Development Index. However, Human Development Index is not the most policy-relevant factor, and this finding should be reconciled against the reality that many countries with low or medium Human Development Index have succeeded in creating and sustaining a health-care system to strengthen cancer pain care and palliative care, including through the appropriate use of essential prescription opioids.


Assuntos
Analgésicos Opioides/uso terapêutico , Acessibilidade aos Serviços de Saúde , Neoplasias/complicações , Manejo da Dor/métodos , Dor/tratamento farmacológico , Cuidados Paliativos/métodos , Analgésicos Opioides/provisão & distribuição , Humanos , Análise Multivariada , Dor/etiologia , Fatores Socioeconômicos
9.
Palliat Med ; 27(6): 533-43, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22988042

RESUMO

BACKGROUND: Using available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home. AIM: To assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood. DESIGN: A pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold. SETTING/PARTICIPANTS: Dyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States. RESULTS: Caregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point. CONCLUSIONS: This study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report's timely communication of caregiving needs in symptom management to clinicians.


Assuntos
Neoplasias da Mama/psicologia , Cuidadores/psicologia , Internet , Neoplasias Pulmonares/psicologia , Cuidados Paliativos/métodos , Neoplasias da Próstata/psicologia , Adaptação Psicológica , Adulto , Afeto , Idoso , Neoplasias da Mama/enfermagem , Comunicação , Efeitos Psicossociais da Doença , Feminino , Humanos , Modelos Lineares , Neoplasias Pulmonares/enfermagem , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Neoplasias da Próstata/enfermagem , Estresse Psicológico , Estados Unidos
11.
J Health Commun ; 17(2): 125-40, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22004055

RESUMO

Numerous studies have investigated the effect of Interactive Cancer Communication Systems (ICCSs) on system users' improvements in psychosocial status. Research in this area, however, has focused mostly on cancer patients, rather than on caregivers, and on the direct effects of ICCSs on improved outcomes, rather than on the psychological mechanisms of ICCS effects. To understand the underlying mechanisms, this study examines the mediating role of perceived caregiver bonding in the relation between one ICCS (the Comprehensive Health Enhancement Support System [CHESS]) use and caregivers' coping strategies. To test the hypotheses, a secondary analysis of data was conducted on 246 caregivers of lung cancer patients. These caregivers were randomly assigned to (a) the Internet, with links to high-quality lung cancer websites, or (b) access to CHESS, which integrated information, communication, and interactive coaching tools. Findings suggest that perceived bonding has positive effects on caregivers' appraisal and problem-focused coping strategies, and it mediates the effect of ICCS on the coping strategies 6 months after the intervention has begun.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Serviços de Informação , Apego ao Objeto , Sistemas On-Line , Feminino , Humanos , Internet , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/terapia , Masculino , Apoio Social
12.
Int J Dermatol ; 61(4): 455-460, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34196998

RESUMO

BACKGROUND: Calciphylaxis is a debilitating dermatological condition associated with high rates of morbidity and mortality. Palliative care offers a multidisciplinary approach to addressing symptoms and goals of care in patients with serious medical diagnoses. Involvement of palliative services for calciphylaxis is infrequently reported in the literature. The purpose of this report is to assess rates of palliative and pain consultation for patients with calciphylaxis. METHODS: This is a comprehensive, single-institution retrospective chart review of 121 eligible patients with a diagnosis of calciphylaxis treated at Mayo Clinic in Rochester, Minnesota, from 1999 to 2016. Inclusion criteria were an indisputable diagnosis of calciphylaxis based on clinical, histopathologic, and radiographic features. One hundred twenty-one patients met inclusion criteria. RESULTS: Fifty-one patients (42%) received either a palliative (n = 15) or pain (n = 20) consultation, or both (n = 16). Patients with a palliative care consultation were younger compared with those without (mean ages 57 vs. 62 years, P = 0.046). In 104 patients (86%), psychiatric symptoms were not assessed. CONCLUSIONS: In this cohort of patients with calciphylaxis, the majority do not receive palliative and pain care consultations. Psychiatric complications are inconsistently addressed. These observations highlight practice gaps in the care of patients with calciphylaxis.


Assuntos
Calciofilaxia , Calciofilaxia/diagnóstico , Calciofilaxia/etiologia , Calciofilaxia/terapia , Humanos , Pessoa de Meia-Idade , Minnesota , Dor/complicações , Cuidados Paliativos , Estudos Retrospectivos
14.
Pain Med ; 11(3): 425-34, 2010 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-20002590

RESUMO

OBJECTIVE: Opioid analgesics are the drugs of choice for the treatment of moderate to severe acute and cancer pain. Although their role in the management of chronic pain not related to cancer is controversial, there is increasing evidence for their benefit in certain patient populations. DESIGN: A 32-item survey to assess Wisconsin physicians' knowledge, beliefs, and attitudes toward opioid analgesic use was mailed to 600 randomly selected licensed physicians, resulting in a 36% response rate. RESULTS: Half of the respondents considered diversion a moderate or severe problem in Wisconsin. A majority considered addiction to be a combination of physiological and behavioral characteristics, rather than defining it solely as a behavioral syndrome. Most physicians felt it lawful and acceptable medical practice to prescribe opioids for chronic cancer pain, but only half held this view if the pain was not related to cancer. Fewer physicians considered such prescribing as lawful and generally accepted medical practice if the patient had a history of substance abuse. About two-thirds of physicians were not concerned about being investigated for their opioid prescribing practices, but some admitted that fear of investigation led them to lower the dose prescribed, limit the number of refills, or prescribe a Schedule III or IV rather than a Schedule II opioid. CONCLUSION: Wisconsin physicians who responded to this survey held many misconceptions about the prescribing of opioids. Such views, coupled with a lack of knowledge about laws and regulations governing the prescribing of controlled substances, may result in inadequate prescribing of opioids with resultant inadequate management of pain.


Assuntos
Analgésicos Opioides/uso terapêutico , Prescrições de Medicamentos/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Dor/tratamento farmacológico , Doença Crônica , Órgãos Governamentais , Guias como Assunto , Pesquisas sobre Atenção à Saúde , Humanos , Legislação de Medicamentos , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Dor/etiologia , Dor Intratável/tratamento farmacológico , Médicos , Inquéritos e Questionários , Wisconsin/epidemiologia
15.
J Health Commun ; 15(4): 445-63, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20574881

RESUMO

Previous research has indicated that treatment staff often underestimate the informational needs of cancer patients. In this study, the authors determined the total number of information sources obtained and used to influence treatment decisions, and the clinical and demographic factors associated with the use of specific sources of information in cancer patients. Participants were identified by the statewide cancer registry and diagnosed in 2004 with breast, colorectal, lung, or prostate cancer. A self-administered mailed questionnaire elicited cancer treatments, demographics, and information sources used to make treatment decisions. Of those surveyed, 1,784 (66%) participated and responded to all questions regarding information use. Over 69% of study participants reported obtaining information from a source other than the treatment staff. Significant predictors of using additional information sources included younger age, higher income, higher education, complementary and alternative medicine (CAM) use, and reporting shared decision making (all p values <.01). Participants with a college degree were more likely to use the Internet (OR 3.7; 95% CI 1.5-9.0) and scientific research reports (OR 3.3; 95% CI 1.6-6.9) to influence treatment decisions compared with those without a high school degree. Support group use to influence treatment decisions was not associated with socioeconomic variables but did vary by cancer type and CAM use. The sources of information study participants obtained and used to influence treatment decisions varied strongly by socioeconomic and demographic variables. These findings provide a deeper understanding of the information needs of cancer patients and have implications for dissemination strategies that can minimize disparities in access to cancer information.


Assuntos
Informação de Saúde ao Consumidor/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Internet/estatística & dados numéricos , Neoplasias/terapia , Participação do Paciente , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Terapias Complementares/estatística & dados numéricos , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Sistema de Registros , Grupos de Autoajuda/estatística & dados numéricos , Fatores Socioeconômicos , Inquéritos e Questionários
16.
J Pain Symptom Manage ; 60(2): e48-e51, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32387575

RESUMO

Section 2 of the 2019 World Health Organization Model List of Essential Medicines includes opioid analgesics formulations commonly used for the control of pain and respiratory distress, as well as sedative and anxiolytic substances such as midazolam and diazepam. These medicines, essential to palliative care, are regulated under the international drug control conventions overseen by United Nations specialized agencies and treaty bodies and under national drug control laws. Those national laws and regulations directly affect bedside availability of Internationally Controlled Essential Medicines (ICEMs). The complex interaction between national regulatory systems and global supply chains (now impacted by COVID-19 pandemic) directly affects bedside availability of ICEMs and patient care. Despite decades of global civil society advocacy in the United Nations system, ICEMs have remained chronically unavailable, inaccessible, and unaffordable in low- and-middle-income countries, and there are recent reports of shortages in high-income countries as well. The most prevalent symptoms in COVID-19 are breathlessness, cough, drowsiness, anxiety, agitation, and delirium. Frequently used medicines include opioids such as morphine or fentanyl and midazolam, all of them listed as ICEMs. This paper describes the issues related to the lack of availability and limited access to ICEMs during the COVID-19 pandemic in both intensive and palliative care patients in countries of all income levels and makes recommendations for improving access.


Assuntos
Infecções por Coronavirus , Acessibilidade aos Serviços de Saúde , Pandemias , Pneumonia Viral , Analgésicos/uso terapêutico , COVID-19 , Infecções por Coronavirus/terapia , Cuidados Críticos/legislação & jurisprudência , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Humanos , Internacionalidade , Legislação de Medicamentos , Cuidados Paliativos/legislação & jurisprudência , Pneumonia Viral/terapia , Nações Unidas
17.
J Support Oncol ; 6(4): 168-74, 2008 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18491685

RESUMO

Enrolling adequate numbers of subjects to research projects that focus on the supportive needs of patients and caregivers is difficult, and this difficulty significantly impedes investigation of this important research area. We report reasons that patients or their informal caregivers declined to participate in one of two randomized, longitudinal clinical trials testing the Comprehensive Health Enhancement Support System (CHESS), a Web-based information and support scheme for people with advanced cancer and their primary informal caregivers. Patients were asked why they declined participation in these trials; their responses then were recorded and coded into themes. The leading reasons included factors related to using a computer (eg, lack of familiarity with using this technology, access to other resources), being attended to by a caregiver (eg, poor caregiver health, caregiver burden, patient doing well and not needing a caregiver), taking part in a study (eg, survey burden, privacy concerns, wording of the consent form), dealing with personal issues (eg, time commitment, timing of study, feelings of being overwhelmed, and coping styles), and lack of interest. By using eligibility criteria that largely parallel those for studies of chemotherapeutic regimens, this research project highlighted reasons why subjects decline participation in clinical trials. This information was specific to supportive care trials; it may help researchers plan recruitment strategies and enrollment targets.


Assuntos
Neoplasias/enfermagem , Participação do Paciente/psicologia , Seleção de Pacientes , Recusa de Participação , Cuidadores , Tomada de Decisões , Humanos , Internet , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Apoio Social
18.
Palliat Support Care ; 6(3): 265-72, 2008 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18662420

RESUMO

OBJECTIVES: Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers' needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory. METHODS: One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey. RESULTS: Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement. SIGNIFICANCE OF RESULTS: Although the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.


Assuntos
Cuidadores/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Adulto , Idoso , Atitude Frente a Morte , Luto , Estudos Transversais , Feminino , Cuidados Paliativos na Terminalidade da Vida , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/patologia , Neoplasias/psicologia , Apoio Social
19.
J Pain Symptom Manage ; 55(2S): S121-S134, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28801005

RESUMO

For two decades, the Pain & Policy Studies Group (PPSG), a global research program at the University of Wisconsin Carbone Cancer Center, has worked passionately to fulfill its mission of improving pain relief by achieving balanced access to opioids worldwide. PPSG's early work highlighted the conceptual framework of balance leading to the development of the seminal guidelines and criteria for evaluating opioid policy. It has collaborated at the global level with United Nations agencies to promote access to opioids and has developed a unique model of technical assistance to help national governments assess regulatory barriers to essential medicines for pain relief and amend existing or develop new legislation that facilitates appropriate and adequate opioid prescribing according to international standards. This model was initially applied in regional workshops and individual country projects and then adapted for PPSG's International Pain Policy Fellowship, which provides long-term mentoring and support for several countries simultaneously. The PPSG disseminates its work online in several ways, including an extensive Web site, news alerts, and through several social media outlets. PPSG has become the focal point for expertise on policy governing drug control and medicine and pharmacy practice related to opioid availability and pain relief.


Assuntos
Analgésicos Opioides/uso terapêutico , Controle de Medicamentos e Entorpecentes/legislação & jurisprudência , Política de Saúde , Dor/tratamento farmacológico , Acessibilidade aos Serviços de Saúde , Disparidades em Assistência à Saúde , Humanos , Internacionalidade , Neoplasias/terapia , Nações Unidas , Universidades , Wisconsin
20.
J Glob Oncol ; 4: 1-24, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-30085844

RESUMO

Purpose The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update of 2016. Methods ASCO convened a multidisciplinary, multinational panel of experts in medical oncology, family medicine, radiation oncology, hematology/oncology, palliative and/or hospice care, pain and/or symptom management, patient advocacy, public health, and health economics. Guideline development involved a systematic literature review, a modified ADAPTE process, and a formal consensus-based process with the Expert Panel and additional experts (consensus ratings group). Results The systematic review included 48 full-text publications regarding palliative care in resource-constrained settings, along with cost-effectiveness analyses; the evidence for many clinical questions was limited. These provided indirect evidence to inform the formal consensus process, which resulted in agreement of ≥ 75% (by consensus ratings group including Expert Panel). Recommendations The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for palliative care. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. Additional information is available at www.asco.org/resource-stratified-guidelines . It is the view of ASCO that health care providers and health care system decision makers should be guided by the recommendations for the highest stratum of resources available. The guideline is intended to complement but not replace local guidelines.


Assuntos
Oncologia/métodos , Oncologia/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Humanos
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