Your browser doesn't support javascript.
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 58
Filtrar
Mais filtros










Base de dados
Intervalo de ano de publicação
1.
J Gen Intern Med ; 35(1): 190-197, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31637639

RESUMO

BACKGROUND: Chronic pain is a prevalent health concern in the United States (US) and a frequent reason for patients to seek primary care. The challenges associated with developing effective pain management strategies can be perceived as a burden on the patient-provider relationship. OBJECTIVE: This study explored the relationship between patients' overall satisfaction with their primary care providers (PCPs) and their satisfaction with their chronic pain treatment, as well as the provider behaviors that contributed to chronic pain patients' satisfaction with their PCPs. DESIGN: Concurrent nested mixed-methods design PARTICIPANTS: 97 patients with chronic pain who were assigned to the usual care arm of the Pain Program for Active Coping and Training (PPACT) study. APPROACH: We analyzed phone interview and survey data (n = 97). Interviews assessed provider behaviors that led to patient satisfaction. Interview transcripts were analyzed based on a content analysis approach. Survey responses assessed patient satisfaction with primary care and pain services. We calculated a Pearson's correlation coefficient using five response categories. KEY RESULTS: Interviews revealed that high satisfaction with primary care was driven by five concrete PCP behaviors: (1) listening, (2) maintaining communication with patients, (3) acting as an access point to comprehensive pain care, (4) providing an honest assessment of the possibilities of pain care, and (5) taking time during consultations with patients. In surveys, participants reported higher satisfaction with their primary care services than with the pain services they received; these variables were only moderately correlated (r = 0.586). CONCLUSIONS: Results suggest that patients with chronic pain can view the relationship with their PCPs as positive, even in the face of low satisfaction with their pain treatment. The expectations that these patients held of PCPs could be met regardless of providers' ability to successfully relieve chronic pain.

2.
Urol Oncol ; 38(2): 39.e21-39.e27, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31711836

RESUMO

OBJECTIVES: To externally validate the European Organization for the Research and Treatment of Cancer (EORTC) risk calculator and National Comprehensive Cancer Network (NCCN) guidelines in a contemporary population of U.S. non-muscle-invasive bladder cancer (NMIBC) patients treated in a community-based setting and compare our findings to those from another U.S. health system. MATERIALS AND METHODS: We identified 1,491 NMIBC patients with a median follow-up of 2.1 years (recurrence) and 4.1 years (progression). We calculated NCCN risk groupings and EORTC prognostic index for recurrence and progression. We followed Royston and Altman's guidelines for the external validation of prognostic calculators. RESULTS: For predicting recurrence using the EORTC framework, Harrell's C (a measure of discrimination) was smaller in our sample (0.66) than in the European Association of Urology sample (0.61), whereas for progression, Harrell's C was larger in our sample (0.78 vs. 0.75). The EORTC calculator overestimated progression risk in the highest stratum for our sample; calibration and discrimination were adequate for all groups except the highest risk group. For NCCN risk groupings, Harrell's C was 0.54 for recurrence and 0.62 for progression, suggesting poor to fair discrimination in our sample. The NCCN framework had slightly better performance for predicting progression vs. recurrence. CONCLUSIONS: Existing NMIBC risk-stratification frameworks have acceptable accuracy to predict outcomes. However, further innovation in NMIBC care will require predictive tools with more granularity to reflect the differential risks of subgroups of NMIBC recurrence, prior treatment histories, and other prognostic variables.

3.
J Urol ; 203(1): 159-163, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31441673

RESUMO

PURPOSE: Patients who undergo cystectomy due to bladder cancer can elect an ileal conduit or a neobladder for urinary diversion. Decision regret related to this choice is an important and undesirable patient reported outcome. Our objective was to compare the severity of decision regret experienced by patients with a neobladder vs an ileal conduit. MATERIALS AND METHODS: We analyzed data from a longitudinal cohort study of patients who underwent cystectomy from 2013 to 2015. We applied multivariable linear regression to examine associations of the urinary diversion method (neobladder vs ileal conduit) with decision regret measured with the DRS (Decision Regret Scale) 6 and 18 months after cystectomy. Covariates included demographic and clinical characteristics, health care utilization and complications after cystectomy, quality of life and factors related to the decision making process, including informed and shared decision making, and goal concordance. RESULTS: Of the 192 patients in our cohort 141 received an ileal conduit and 51 received a neobladder. We observed no significant difference in the DRS score in patients with a neobladder vs an ileal conduit at 6 or 18 months (b=-1.28, 95% CI -9.07-6.53, vs b=-1.55, 95% CI -12.48-9.38). However, informed decision making was negatively related to decision regret at 6 and 18 months (b=-13.08, 95% CI -17.05--9.11, and b=-8.54, 95% CI -4.26--2.63, respectively). Quality of life was negatively associated with decision regret at 18 months (b=-5.50, 95% CI -8.95--2.03). CONCLUSIONS: Patients treated with cystectomy who were more informed about bladder reconstruction options experienced less regret independent of the method selected. Efforts to inform and prepare patients for the bladder reconstruction decision may help prevent decision regret.


Assuntos
Cistectomia , Tomada de Decisões , Neoplasias da Bexiga Urinária/cirurgia , Derivação Urinária/métodos , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Qualidade de Vida , Neoplasias da Bexiga Urinária/patologia
4.
Qual Life Res ; 2019 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-31811594

RESUMO

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

5.
Int J Drug Policy ; 74: 62-68, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31536957

RESUMO

BACKGROUND: Opioid treatment for chronic pain has garnered heightened public attention and political pressure to control a devastating public health crisis in the United States (U.S.). Resulting policy changes, together with ongoing public and political attention, have pushed health care systems and providers to lower doses or deprescribe and taper patients off opioids. However, little attention has been paid to the impact of such practice changes on patients who had relied on opioid treatment to manage their chronic pain. The aim of this article is to explore experiences with opioid-related care under aggressive tapering efforts and concomitant heightened monitoring and institutional oversight among patients with chronic pain in an integrated delivery system through in-depth interviews. METHODS: We interviewed 97 patients with chronic pain who were assigned to the usual care arm of the Pain Program for Active Coping and Training (PPACT) study. These patients had been prescribed opioids as part of their treatment regimens and taken opioids closely monitored by their health care providers. We followed the framework method for coding and analysing transcripts using NVivo 12. RESULTS: The experiences of these patients during this period of change can be understood through three interconnected themes: (1) many patients taking opioids experience debilitating physical side effects; (2) navigating opioid treatment contributes to significant emotional distress among many patients with chronic pain and; (3) the quality of patients' relationship with their primary care provider can be negatively affected by negotiations regarding long-term opioid treatment for chronic pain. CONCLUSION: We highlight the importance of utilizing communication approaches that are patient-centered and include shared decision making during the tapering and/or deprescribing processes of opioids and ensuring alternative pain treatments are available to patients with chronic pain.

6.
Perm J ; 232019.
Artigo em Inglês | MEDLINE | ID: mdl-31496500

RESUMO

BACKGROUND: Among the approximately 53,000 patients newly diagnosed with early-stage (superficial) bladder cancer each year, there is substantial variability in the progression to muscle-invasive disease. Enhancing risk stratification and risk-stratified surveillance could minimize risks and harms to patients, as well as unnecessary costs to health systems. OBJECTIVES: As a preliminary step in developing and validating a risk assessment tool for superficial bladder cancer in a population-based clinical cohort, we interviewed urologists who might use such a tool to assess need, determine potential use cases, and identify key features to include. METHODS: Using an opportunistic and purposeful sampling design, we invited 13 urologists from a variety of practice settings and with a wide range of clinical experience to take part in qualitative interviews; 9 (5 urologic oncologists and 4 general urologists) participated. RESULTS: All urologists reported using some form of risk stratification to determine surveillance schedules for patients with bladder cancer. The following use cases were endorsed by 4 or more interviewees: 1) provide evidence to guide clinical management in specific situations, 2) generate patient-facing communication aids, 3) improve documentation about recurrence/progression risk, and 4) create scheduling and callback supports to improve the quality of follow-up care. CONCLUSION: Our findings demonstrated several potential clinical-use cases for a risk calculator and clinical decision-support tool for patients with superficial bladder cancer. Clinicians stressed the potential utility of such a tool to improve patient communication, scheduling, and tracking in general urology practice.

7.
Psychooncology ; 28(11): 2233-2239, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31461197

RESUMO

OBJECTIVE: Previous research has demonstrated the importance of eliciting patients' goals and values during shared decision-making (SDM), but this does not occur in most SDM conversations. Understanding challenges to eliciting patients' goals and values is crucial. This study assessed how clinicians balanced sharing medical information and considering patients' goals and values during breast cancer surgery consultation in an integrated health care system. METHODS: We conducted interviews with clinicians (n = 6) and patients (n = 11) and conducted naturalistic, ethnographic observations of eight surgical consultations in a multidisciplinary breast cancer clinic. We analyzed the data following the template method using the qualitative software NVivo 10. RESULTS: Clinicians prioritized sharing medical information. We identified four patient factors necessary to integrate patients' values and goals into the conversation in addition to sharing medical information: ability to process large quantities of information quickly, willingness to embrace swift decision-making, ability to quickly formulate one's values, and prioritization of surgical choice as the goal of the conversation. CONCLUSIONS: We found that SDM implementation results in practices that emphasize information and choice, with less focus on patient goals and values. More research is needed to explore factors that may encourage the elicitation of patients' goals and values.

8.
Health Expect ; 22(5): 1050-1057, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31273909

RESUMO

BACKGROUND: Colorectal cancer (CRC) diagnosed at ages <50 years old (early-onset CRC) has been increasing in the United States, resulting in a growing number of early-onset CRC survivors who may face significant financial and quality of life (QOL) challenges. OBJECTIVE: Identify themes from a patient advocate discussion about the impact of CRC on financial burden and QOL among early-onset CRC survivors. METHODS: We conducted a semi-structured, stakeholder discussion among 14 early-onset CRC survivors and one caregiver who were members of an advocacy group. The discussion focused on the financial and overall QOL impacts of CRC. The meeting was recorded, transcribed and coded in ATLAS.ti, using a thematic analysis approach. RESULTS: Cancer stage at diagnosis among advocates with CRC ranged from 2 to 4; about half of the attendees had no evidence of disease, and about half were undergoing treatment. Employment (career trajectory, lost wages, health insurance/benefits, performance) emerged as the dominant theme of the financial impacts discussion. Lifestyle impacts of disease and survivorship included both emotional and physical side-effects. Diagnosis experience, missing information about CRC treatment and side-effects, financial stress and strain on relationships were the primary themes for the overall QOL impacts. CONCLUSION: Given the growing incidence of CRC in those under 50, it is particularly important for providers to be aware of these patients' financial, emotional and QOL needs, and to develop care plans that specifically address these areas of concern for early-onset CRC survivors.

9.
Cancer Causes Control ; 30(7): 747-755, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31102084

RESUMO

PURPOSE: Our objective was to describe differences in treatment patterns and survival between early-onset (< 50 years old) and late-onset colorectal cancer (CRC) patients in community-based health systems. METHODS: We used tumor registry and electronic health record data to identify and characterize patients diagnosed with adenocarcinoma of the colon or rectum from 2010 to 2014 at six US health systems in the patient outcomes to advance learning (PORTAL) network. We used logistic regression to estimate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) comparing the distribution of tumor characteristics and treatment patterns in early-onset versus late-onset CRC. Cox regression models were used to estimate adjusted hazard ratios (HRs) and CIs comparing survival between early- and late-onset CRC patients. RESULTS: There were 1,424 early-onset and 10,810 late-onset CRC cases in our analyses. Compared to late-onset CRC, early-onset CRC was significantly associated with advanced-stage disease, high-grade histology, signet ring histology, and rectal or left colon location. After adjusting for differences in tumor and patient characteristics, early-onset patients were more likely than late-onset patients to have > 12 lymph nodes examined (OR 1.60, CI 1.37-1.87), to receive systemic therapy (chemotherapy or immunotherapy) within 6 months of diagnosis (OR 2.84, CI 2.40-3.37), and to have a reduced risk of CRC-specific death (HR 0.66, CI 0.56-0.79). CONCLUSIONS: Early-onset CRC is associated with aggressive tumor characteristics, distal location, and systemic therapy use. Despite some adverse risk factors, these patients tend to have better survival than older onset patients.


Assuntos
Adenocarcinoma , Neoplasias Colorretais , Adenocarcinoma/diagnóstico , Adenocarcinoma/epidemiologia , Adenocarcinoma/terapia , Adolescente , Adulto , Idade de Início , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Sistema de Registros , Adulto Jovem
10.
J Urol ; 202(1): 83-89, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30835627

RESUMO

PURPOSE: Patient centered care aims to align treatment with patient goals, especially when treatment options have equivalent clinical outcomes. For surgeries with lasting impacts that alignment is critical. To our knowledge no psychometrically tested preference elicitation measures exist to support patients with bladder cancer treated with cystectomy, who can often choose between ileal conduit and neobladder diversions. In this study we created a scale to measure how patient goals align with each type of urinary diversion and the associated surgical outcomes. MATERIALS AND METHODS: We performed formative research through focus groups and clinician outreach to adapt a goal dissonance measure. We mailed a survey to adult Kaiser Permanente® members who underwent cystectomy for bladder cancer between January 2013 and June 2015. Eligible patients were identified through electronic health records and chart review. Surveys were mailed 5 to 7 months postoperatively. We administered our 10-item decision dissonance scale along with other decision making measures. We explored goal alignment as well as dissonance. Psychometric analysis included factor analysis, evaluation of scale scores between surgery groups and evaluation with other decision making scores. RESULTS: We identified 10 goals associated with ileal conduit or neobladder diversion. Using survey data on 215 patients our scale differentiated patient goals associated with each diversion choice. On average patients with a neobladder strongly valued neobladder aligned goals such as maintaining body integrity and volitional voiding through the urethra. Patients with an ileal conduit had neutral values on average across all goals. CONCLUSIONS: Our measure lays the foundation for a simple value elicitation approach which could facilitate shared decision making about urinary diversion choice.


Assuntos
Tomada de Decisão Clínica/métodos , Tomada de Decisões , Preferência do Paciente , Neoplasias da Bexiga Urinária/cirurgia , Derivação Urinária/psicologia , Idoso , Cistectomia/efeitos adversos , Feminino , Grupos Focais , Metas , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Inquéritos e Questionários , Derivação Urinária/efeitos adversos , Derivação Urinária/métodos
11.
Bladder Cancer ; 5(1): 51-61, 2019 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-30854413

RESUMO

Background: Bladder cancer patients who undergo cystectomy and urinary diversion face functional and quality-of-life challenges. Little is known about these patients' experiences during decision-making, surgery, and recovery, or how they vary by treatment setting. Objective: To learn about patients' experiences with treatment choice, surgical care, and recovery across health settings. Understanding patient experiences is essential to closing care gaps and developing patient-reported measures. Methods: We conducted focus groups with cystectomy patients and family caregivers at a large comprehensive health care system (N = 32 patients) and an NCI-designated comprehensive cancer center (N = 25 patients and 5 caregivers). Using standard qualitative methods, we identified themes that are not well-represented in existing research. Results: Across both systems, patients described variable experiences in decision-making about their cystectomy and urinary diversion. Some felt overwhelmed by information; others felt poorly informed. Many found self-care equipment challenging; many felt they knew little about what to expect regarding chemotherapy, recovery, and transitioning home. At times, health care personnel could not help manage patients' ostomies or catheterization equipment. Our study also contributes a grounded theoretical framework for describing meaningful domains of patient experience with cystectomy and urinary diversion. We identified a common trajectory that includes decision-making, surgery and post-operative recovery, mastery of self-care, and reintegration. Conclusions: Patients with radical cystectomy and urinary diversion report a wide variety of experiences not captured by quantitative measures. These findings demonstrate that many cystectomy patients could benefit from additional post-operative support. We offer a framework to measure patient-centered domains in future research.

14.
Urology ; 125: 222-229, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30471370

RESUMO

OBJECTIVE: To assess the relative contributions of patient and surgeon factors for predicting selection of ileal conduit (IC), neobladder (NB), or continent pouch (CP) urinary diversions (UD) for patients diagnosed with muscle-invasive/high-risk nonmuscle invasive bladder cancer. This information is needed to enhance research comparing cancer survivors' outcomes across different surgical treatment options. METHODS: Bladder cancer patients' age ≥21 years with cystectomy/UD performed from January 2010 to June 2015 in 3 Kaiser Permanente regions were included. All patient and surgeon data were obtained from electronic health records. A mixed effects logistic regression model was used treating surgeon as a random effect and region as a fixed effect. RESULTS: Of 991 eligible patients, 794 (80%) received IC. One hundred sixty-nine surgeons performed the surgeries and accounted for a sizeable proportion of the variability in patient receipt of UD (intraclass correlation coefficient = 0.26). The multilevel model with only patient factors showed good fit (area under the curve = 0.93, Hosmer-Lemeshow test P = .44), and older age, female sex, estimated glomerular filtration rate <45, 4+ comorbidity index score, and stage III/IV tumors were associated with higher odds of receiving an IC vs neobladder/continent pouch. However, including surgeon factors (annual cystectomy volume, specialty training, clinical tenure) had no association (P = .29). CONCLUSION: In this community setting, patient factors were major predictors of UD received. Surgeons also played a substantial role, yet clinical training and experience were not major predictors. Surgeon factors such as beliefs about UD options and outcomes should be explored.


Assuntos
Cistectomia , Neoplasias da Bexiga Urinária/cirurgia , Derivação Urinária , Idoso , Serviços de Saúde Comunitária , Prestação Integrada de Cuidados de Saúde , Feminino , Previsões , Humanos , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Seleção de Pacientes , Complicações Pós-Operatórias/epidemiologia , Neoplasias da Bexiga Urinária/patologia , Derivação Urinária/métodos , Derivação Urinária/estatística & dados numéricos
15.
Nutr Cancer ; 71(1): 89-99, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30572723

RESUMO

BACKGROUND: Rectal cancer (RC) survivors experience significant bowel function issues after treatment. We aimed to describe self-reported dietary and behavioral modifications among long-term (≥5 yr) RC survivors to manage bowel dysfunction. METHODS: RC survivors from Kaiser Permanente Northern California and Northwest regions completed surveys either via postage-paid return mail or telephone. Summary statistics on diet/behavioral modifications data were tabulated by proportion of responses. Modifications and frequency of bowel symptoms cited and were compared by ostomy status. RESULTS: A total of 575 respondents were included (overall response rate = 60.5%). Fruits and vegetables were troublesome for symptoms, but was also helpful in mitigating constipation, obstruction, and frequency, as well as improving predictability. Many respondents attributed red meat (17.7%), fried foods (13.9%), spicy foods (13.1%), carbonated beverages (8.0%), and sweets (7.6%) to increased diarrhea, gas, and urgency. Common behavioral modifications included controlling meal portions (50.6%), timing regularity (25.3%), and refraining from late night eating (13.8%). Permanent ostomy survivors were more likely to report symptoms of obstruction, while anastomosis survivors were more likely to report urgency. CONCLUSION: Multiple modifications were attempted by RC survivors to manage bowel symptoms. Identifying diet changes among RC survivors can improve symptom management and survivorship care.

16.
Clin Case Rep ; 6(11): 2092-2095, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30455898

RESUMO

A research study utilizing whole-genome sequence analysis for preconception carrier screening provided a genome-first detection of a severe de novo Factor VIII mutation in a woman with implications for pregnancy management and life-saving interventions of her newborn son, and a challenge to the existing paradigm regarding carrier testing.

17.
Cancer ; 124(23): 4477-4485, 2018 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-30289971

RESUMO

BACKGROUND: Multiple chronic conditions (MCC) are common among older patients with cancer; however, the exclusion of these patients from clinical trials has resulted in scarce knowledge concerning outcomes, resulting in variations in treatment. Superficial bladder cancer (SBC) disproportionately affects older adults, yet to the authors' knowledge few studies to date have examined whether treatment improves long-term survival. In the current study, the authors evaluated the association between treatment of SBC and 10-year mortality in medically complex older adults. METHODS: The authors identified 1800 older (aged ≥60 years) patients with SBC (American Joint Committee on Cancer stage ≤I) from 2 community-based health systems who received treatment (bladder instillation and/or transurethral resection) or observation. Cox proportional hazards regression was performed adjusting for age, sex, race, health system, stage of disease/grade, and MCC (≥2 baseline chronic conditions). Propensity score analysis using stabilized inverse probability of treatment weights was used to compare 10-year mortality in the 2 treatment groups with adjustment for covariates. RESULTS: Overall, 1485 patients (82.5%) and 315 patients (17.5%) received treatment and observation, respectively. In unweighted multivariable analysis, treatment was associated with a 30% reduction in death (adjusted hazard ratio [HR], 0.70; 95% confidence interval [95% CI], 0.58-0.85 [P<.01]) and MCC with a 72% increase in death (adjusted HR, 1.72; 95% CI, 1.44-2.05 [P<.01]). Weighted analysis with adjustment (doubly robust) also demonstrated a survival benefit for treatment (adjusted HR, 0.66; 95% CI, 0.52-0.84 [P<.01]). CONCLUSIONS: The results of the current study demonstrated a clinically meaningful association between cancer treatment and survival benefit in older, medically complex patients with SBC, even after adjustment for medical complexity. These data provide a foundation for future work aimed at personalizing the treatment guidance of older patients with cancer with MCC.


Assuntos
Antineoplásicos/administração & dosagem , Múltiplas Afecções Crônicas/epidemiologia , Neoplasias da Bexiga Urinária/terapia , Procedimentos Cirúrgicos Urológicos/métodos , Administração Intravesical , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/uso terapêutico , Comorbidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Sobrevida , Resultado do Tratamento
18.
Support Care Cancer ; 26(11): 3933-3939, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29845420

RESUMO

PURPOSE: Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. METHODS: We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. RESULTS: The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. CONCLUSIONS: The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.


Assuntos
Sobreviventes de Câncer , Estomia , Neoplasias Retais/reabilitação , Neoplasias Retais/cirurgia , Autocuidado , Adulto , Idoso , Idoso de 80 Anos ou mais , California/epidemiologia , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oregon/epidemiologia , Estomia/psicologia , Estomia/estatística & dados numéricos , Qualidade de Vida/psicologia , Neoplasias Retais/psicologia , Autocuidado/métodos , Autocuidado/psicologia , Autocuidado/normas , Autorrelato , Inquéritos e Questionários , Washington/epidemiologia
19.
J Genet Couns ; 27(4): 823-833, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29423569

RESUMO

Advances in technology and the promise of personalized health care are driving greater use of genome sequencing (GS) for a variety of clinical scenarios. As health systems consider adopting GS, they need to understand the impact of GS on the organization and cost of care. While research has documented a dramatic decrease in the cost of sequencing and interpreting GS, few studies have examined how GS impacts genetic counseling workloads. This study examined the time needed to provide genetic counseling for GS in the context of preconception carrier screening. Genetic counselors prospectively reported on the time spent in the results disclosure process with 107 study participants who were part of the NextGen study. We found that the median time for results disclosure was 64 min (ranged from 5 to 229 min). Preparation work was the most time-consuming activity. Qualitative data from journal entries, debrief interviews with genetic counselors, and detailed case conference notes provided information on factors influencing time for results disclosure and implications for practice. Results suggest that expanded carrier screening could require significant increases in genetic counseling time, unless we are able to generate new resources to reduce preparation work or develop other strategies such as the creation of new models to deliver this type of service.


Assuntos
Aconselhamento Genético/economia , Cuidado Pré-Concepcional , Fatores de Tempo , Adulto , Feminino , Humanos , Masculino , Gravidez
20.
Am J Med Genet A ; 176(2): 376-385, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29250907

RESUMO

As expanded genome-scale carrier screening becomes increasingly prevalent, patients will face decisions about whether to receive results about a vast number of genetic conditions. Understanding patient preferences is important to meaningfully demonstrate the ethical goal of respect and support patient autonomy. We explore one possible way to elicit preferences by sorting conditions into categories, which may support patient decision making, but the extent to which categories are helpful is unknown. In the context of a randomized trial of genome sequencing for preconception carrier screening compared to usual care (single disease carrier testing), we interviewed 41 participants who had genome sequencing about their experience using a taxonomy of conditions to select categories of results to receive. We then conducted interviews with an additional 10 participants who were not randomized to genome sequencing, asking them about the taxonomy, their reasons for selecting categories, and alternative ways of presenting information about potential results to receive. Participants in both groups found the categories helpful and valued having a meaningful opportunity to choose which results to receive, regardless of whether they opted to receive all or only certain categories of results. Additionally, participants who received usual care highlighted preparedness as a primary motivation for receiving results, and they indicated that being presented with possible reasons for receiving or declining results for each category could be helpful. Our findings can be used to develop approaches, including the use of categories, to support patient choices in expanded carrier screening. Further research should evaluate and optimize these approaches.


Assuntos
Triagem de Portadores Genéticos , Genômica , Heterozigoto , Adulto , Tomada de Decisão Clínica , Feminino , Triagem de Portadores Genéticos/métodos , Testes Genéticos/métodos , Genoma Humano , Genômica/métodos , Humanos , Masculino
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA