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1.
Cancer ; 130(4): 618-635, 2024 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-37905783

RESUMO

BACKGROUND: Cancer survivors with ostomies face complex challenges. This study compared the Ostomy Self-Management Telehealth program (OSMT) versus attention control usual care (UC). METHODS: Three academic centers randomized participants. OSMT group sessions were led by ostomy nurses and peer ostomates (three for ostomates-only, one for support persons, and one review session for both). Surveys at baseline, OSMT completion, and 6 months were primary outcome patient activation (PAM), self-efficacy (SE), City of Hope quality of life-Ostomy (COH-O), and Hospital Anxiety and Depression Scale (HADS). Surveys were scored per guidelines for those completing at least two surveys. Linear mixed effects models were used to select potential covariates for the final model and to test the impact of OSMT within each timeframe. RESULTS: A total of 90 OSMT and 101 UC fulfilled analysis criteria. Arms were well-matched but types of tumors were unevenly distributed (p = .023). The OSMT arm had a nonsignificant improvement in PAM (confidence interval [CI], -3.65 to 5.3]; 4.0 vs. 2.9) at 6 months. There were no significant differences in other surveys. There was a significant OSMT benefit for urinary tumors (four SE domains). Higher OSMT session attendance was associated with post-session improvements in five SE domains (p < .05), two COH-O domains (p < .05), and HADS anxiety (p = .01). At 6 months, there remained improvements in one SE domain (p < .05), one COH-O domain (p < .05), and HADS anxiety (p < .01). CONCLUSIONS: No clear benefit was seen for the OSMT intervention, although there may be an advantage based on type of tumor. Benefit with greater session attendance was also encouraging. PLAIN LANGUAGE SUMMARY: Cancer patients with ostomies have many challenges. We tested a telehealth curriculum compared to usual care. There are indications of benefit for the program for those that attend more sessions and those with urostomies.


Assuntos
Sobreviventes de Câncer , Neoplasias , Estomia , Telemedicina , Humanos , Qualidade de Vida , Estudos Prospectivos , Estomia/educação , Neoplasias/terapia
2.
Neurocrit Care ; 40(2): 603-611, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37498456

RESUMO

BACKGROUND: In patients with symptomatic cerebral vasospasm (CV) following aneurysmal subarachnoid hemorrhage who do not respond to medical therapy, urgent treatment escalation has been suggested to be beneficial for brain tissue at risk. In our routine clinical care setting, we implemented stellate ganglion block (SGB) as a rescue therapy with subsequent escalation to intraarterial spasmolysis (IAS) with milrinone for refractory CV. METHODS: In this retrospective analysis from 2012 to 2021, patients with CV following aneurysmal subarachnoid hemorrhage who received an SGB or IAS were identified. Patients were assessed through neurological examination and transcranial Doppler. Rescue therapy was performed in patients with mean cerebral blood flow velocity (CBFV) ≥ 120 cm/s and persistent neurological deterioration/intubation under induced hypertension. Patients were reassessed after therapy and the following day. The Glasgow Outcome Scale was assessed at discharge and 6-month follow-up. RESULTS: A total of 82 patients (mean age 50.16 years) with 184 areas treated with SGB and/or IAS met the inclusion criteria; 109 nonaffected areas were extracted as controls. The mean CBFV decrease in the middle cerebral artery on the following day was - 30.1 (± 45.2) cm/s with SGB and - 31.5 (± 45.2) cm/s with IAS. Mixed linear regression proved the significance of the treatment categories; other fixed effects (sex, age, aneurysm treatment modality [clipping or coiling], World Federation of Neurological Surgeons score, and Fisher score) were insignificant. In logistic regression, the presence of cerebral infarction on imaging before discharge from the intensive care unit (34/82) was significantly associated with unfavorable outcomes (Glasgow Outcome Scale ≤ 3) at follow-up. CONCLUSIONS: Stellate ganglion block and IAS decreased CBFV the following 24 h in patients with CV. We suggest SGB alone for patients with mild symptomatic CV (CBFV < 180 cm/s), while subsequent escalation to IAS proved to be beneficial in patients with refractory CV and severe CBFV elevation (CBFV ≥ 180 cm/s).


Assuntos
Hemorragia Subaracnóidea , Vasoespasmo Intracraniano , Humanos , Pessoa de Meia-Idade , Hemorragia Subaracnóidea/complicações , Hemorragia Subaracnóidea/terapia , Estudos Retrospectivos , Vasoespasmo Intracraniano/diagnóstico por imagem , Vasoespasmo Intracraniano/etiologia , Vasoespasmo Intracraniano/terapia , Gânglio Estrelado , Infarto Cerebral/complicações
3.
CA Cancer J Clin ; 66(5): 387-97, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-26999757

RESUMO

For some patients with low rectal cancer, ostomy (with elimination into a pouch) may be the only realistic surgical option. However, some patients have a choice between ostomy and sphincter-sparing surgery. Sphincter-sparing surgery has been preferred over ostomy because it offers preservation of normal bowel function. However, this surgery can cause incontinence and bowel dysfunction. Increasingly, it has become evident that certain patients who are eligible for sphincter-sparing surgery may not be well served by the surgery, and construction of an ostomy may be better. No validated assessment tool or decision aid has been published to help newly diagnosed patients decide between the two surgeries or to help physicians elicit long-term surgical outcomes. Furthermore, comparison of long-term outcomes and late effects after the two surgeries has not been synthesized. Therefore, this systematic review summarizes controlled studies that compared long-term survivorship outcomes between these two surgical groups. The goals are: 1) to improve understanding and shared decision-making among surgeons, oncologists, primary care providers, patients, and caregivers; 2) to increase the patient's participation in the decision; 3) to alert the primary care provider to patient challenges that could be addressed by provider attention and intervention; and 4) ultimately, to improve patients' long-term quality of life. This report includes discussion points for health care providers to use with their patients during initial discussions of ostomy and sphincter-sparing surgery as well as questions to ask during follow-up examinations to ascertain any long-term challenges facing the patient. CA Cancer J Clin 2016;66:387-397. © 2016 American Cancer Society.


Assuntos
Colectomia/psicologia , Tratamentos com Preservação do Órgão/psicologia , Estomia/psicologia , Qualidade de Vida , Neoplasias Retais/psicologia , Neoplasias Retais/cirurgia , Canal Anal , Colectomia/métodos , Humanos , Estomia/métodos , Preferência do Paciente
4.
Support Care Cancer ; 31(1): 15, 2022 Dec 14.
Artigo em Inglês | MEDLINE | ID: mdl-36513895

RESUMO

PURPOSE: An ostomy introduces to cancer survivors new demands for self-care and healthcare resource use. A curriculum that teaches ostomates self-management skills may affect survivors' use of resources. METHODS: A prospective randomized trial comparing usual care (UC) with an Ostomy Self-Management Training (OSMT) program delivered by telehealth was conducted in patients with ostomies due to cancer. The intervention occurred over 5 weeks with survey administration at baseline, program completion, and 6 months after completion. Quantitative data were analyzed using a mixed-effects logistic model to predict mean values of resource and service use. Responses to the open-ended question were coded and analyzed with directed content analysis. RESULTS: One hundred and sixty-seven subjects (89 in the OSMT arm and 78 in the UC arm) completed the questionnaire at all time points. The changes in likelihoods of emptying one's ostomy bag > 8 times/week and of incurring any out-of-pocket costs on accessories were 14% greater for the intervention group (p = .029 and p = .063, respectively). Qualitative analysis reveals among the OSMT arm an increase in the proportion of ostomy-specific comments and a decrease in the same metric among the UC arm. Common themes included learning to work with equipment, dealing with gas build-up and finding well-fitting clothing. CONCLUSIONS: There are some indications that participants in this structured telehealth program are more active in ostomy self-care. The reported ostomy self-care activities, healthcare consumables, and healthcare services reported by both groups illustrate the complexity of survivorship care following ostomy surgery. National Clinical Trial Identifier: NCT02974634.


Assuntos
Sobreviventes de Câncer , Neoplasias , Estomia , Telemedicina , Humanos , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Neoplasias/cirurgia
5.
Support Care Cancer ; 30(7): 6187-6193, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35438337

RESUMO

PURPOSE: Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies. METHODS: Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics. RESULTS: Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%). CONCLUSIONS: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.


Assuntos
Sobreviventes de Câncer , Estomia , Autogestão , Telemedicina , Humanos , Autogestão/educação , Participação dos Interessados
6.
Support Care Cancer ; 30(2): 1139-1147, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34435212

RESUMO

OBJECTIVES: An ostomy results in lifelong quality of life changes for a cancer survivor. We describe the greatest challenges reported from a randomized trial of cancer survivors with stomas (ostomies). METHODS: Cancer survivors with ostomies participating in a multi-site randomized prospective trial of an Ostomy Self-Management Telehealth (OSMT) program versus usual care (UC) were surveyed at six months post accrual. An open-ended question requested greatest challenges after ostomy surgery. Quantitative descriptive and qualitative analyses were used to examine greatest challenges reported. RESULTS: A total of 118 trial participants identified greatest challenges with 55 in the OSMT and 63 in the UC. Six conceptual domains were used to code comments-physical, psychological, social, and spiritual quality of life; ostomy-specific issues, and healthcare issues. The OSMT contributed 187 comments, and UC contributed 235 comments. Ostomy specific issues and social well-being had the most comments overall with UC contributing more comments in all domains except physical well-being. Word Clouds revealed post-operative and treatment-related issues and going out in public as the most common challenges in both groups. Word Clouds compared types of ostomies revealing bowel function challenges (colostomy group), difficulties going out in public (ileostomy group), and positive support (urostomy group). CONCLUSIONS: Fewer challenges submitted by the OSMT group provide the beginning evidence of the OSMT program impact. Dominant challenges across both groups were social well-being and ostomy care. Challenges varied by type of ostomy. Findings support long-term care and support for all cancer survivors with ostomies. TRIAL REGISTRATION: NCT02974634.


Assuntos
Sobreviventes de Câncer , Neoplasias , Estomia , Autogestão , Telemedicina , Humanos , Estudos Prospectivos , Qualidade de Vida
7.
Value Health ; 24(9): 1245-1253, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34452703

RESUMO

OBJECTIVES: Programmatic cost assessment of novel clinical interventions can inform their widespread dissemination and implementation. This study aimed to determine the programmatic costs of a telehealth Ostomy Self-Management Training (OSMT) intervention for cancer survivors using Time-Driven Activity-Based Costing (TDABC) methodology. METHODS: We demonstrated a step-by-step application of TDABC based on a process map with core OSMT intervention activities and associated procedures and determined resource use and costs, per unit procedure. We also assessed per-patient costs from a payer perspective and provided estimates of total hours and costs by personnel, activity, and procedure. RESULTS: The per-patient cost of the OSMT was $1758. Personnel time accounted for 91% of the total cost. Site supervisor and information technology technician time were the most expensive personnel resources. Telehealth technical and communication equipment accounted for 8% of the total cost. Intervention coordination and monitoring efforts represented most of the total time cost (62%), followed by the intervention delivery (35%). The procedures with the highest cost were communication via phone or virtual meetings (24%), email exchanges (18%), and telehealth session delivery (18%). CONCLUSIONS: Future efforts to replicate, disseminate, and implement the OSMT intervention should anticipate funding for nonclinical components of the intervention, including coordination and monitoring, and consider how these activities can be performed most efficiently. For institutions without established telemedicine programs, selection of videoconferencing platforms and adequate staffing for participant technical support should be considered. Our step-by-step application of TDABC serves as a case study demonstrating how interventionists can gather data on resource use and costs of intervention activities concurrently with their collection of trial data.


Assuntos
Custos e Análise de Custo , Estomia , Autogestão/economia , Autogestão/educação , Telemedicina , Humanos
8.
Aging Clin Exp Res ; 33(6): 1529-1537, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32930988

RESUMO

BACKGROUND: While sensor-based daily physical activity (DPA) gait assessment has been demonstrated to be an effective measure of physical frailty and fall-risk, the repeatability of DPA gait parameters between different days of measurement is not clear. AIMS: To evaluate test-retest reliability (repeatability) of DPA gait performance parameters, representing the quality of walking, and quantitative gait measures (e.g. number of steps) between two separate days of assessment among older adults. METHODS: DPA was acquired for 48-h from older adults (age ≥ 65 years) using a tri-axial accelerometer. Continuous walking bouts (≥ 60 s) were identified from acceleration data and used to extract gait performance parameters, including time- and frequency-domain gait parameters, representing walking speed, variability, and irregularity. To assess repeatability, intraclass correlation coefficient (ICC) was calculated using two-way mixed effects F-test models for day-1 vs. day-2 as the independent random effect. Repeatability tests were performed for all participants and also within frailty groups (non-frail and pre-frail/frail identified using Fried phenotype). RESULTS: Data was analyzed from 63 older adults (29 non-frail and 34 pre-frail/frail). Most of the time- and frequency-domain gait performance parameters showed good to excellent repeatability (ICC ≥ 0.70), while quantitative parameters, including number of steps and walking duration showed poor repeatability (ICC < 0.30). Among majority of the gait performance parameters, we observed higher repeatability among the pre-frail/frail group (ICC > 0.78) compared to non-frail individuals (0.39 < ICC < 0.55). CONCLUSION: Gait performance parameters, showed higher repeatability compared to quantitative measures. Higher repeatability among pre-frail/frail individuals may be attributed to a reduced functional capacity for performing more intense and variable physical tasks. TRIAL REGISTRATION: The clinical trial was retrospectively registered on June 18th, 2013 with ClinicalTrials.gov, identifier NCT01880229.


Assuntos
Fragilidade , Idoso , Idoso Fragilizado , Fragilidade/diagnóstico , Marcha , Avaliação Geriátrica , Humanos , Reprodutibilidade dos Testes , Caminhada
9.
J Med Internet Res ; 23(9): e26545, 2021 09 27.
Artigo em Inglês | MEDLINE | ID: mdl-34086595

RESUMO

BACKGROUND: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology-related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. OBJECTIVE: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. METHODS: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. RESULTS: A total of 97.1% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non-technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86%) completed their OSMT curriculum. TTR incidents occurred in 36.3% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. CONCLUSIONS: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. TRIAL REGISTRATION: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634.


Assuntos
Sobreviventes de Câncer , Neoplasias , Estomia , Autogestão , Telemedicina , Humanos , Tecnologia
10.
Support Care Cancer ; 28(4): 1551-1554, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31720825

RESUMO

PURPOSE: An ostomy poses significant health-related quality of life (HRQOL) issues for cancer survivors. Survivors must learn to manage pouching appliances and adjust to the psychosocial consequences of living with an ostomy. We explored, through qualitative analysis, the challenges with self-management and ostomy appliances reported by cancer survivors. METHODS: Pooled data from two studies with a question on the greatest challenge of living with an ostomy and intervention session notes were analyzed using content analysis approach. The themes were reviewed and agreed upon by the research team, and counts were tallied for each theme based on the number of times they were mentioned by participants. RESULTS: Of the 928 greatest challenge responses and session notes, a total of 106 mentions (11%) were focused on ostomy appliances, associated repercussions, and time taken for ostomy care. Eight themes emerged: bleeding, pain, leakage, skin problems/irritation/rash, wafer-related issues, materials getting under the wafer, time to care for ostomy, and solutions to clean the stoma. Challenges described included poor wafer adherence, allergic reactions to adhesives, and pain around the stoma site. These challenges resulted in anxiety related to leakage, odor, and/or skin irritation, which negatively impacted on participation in social activities and self-confidence with ostomy care. CONCLUSIONS: Cancer survivors living with an ostomy experience multiple obstacles with ostomy appliances and caring for their ostomy. Continued innovation in ostomy appliance design and technology is needed to help cancer survivors with successfully managing ostomy care.


Assuntos
Sobreviventes de Câncer/psicologia , Estomia/psicologia , Estomia/reabilitação , Neoplasias Retais/reabilitação , Humanos , Estomia/efeitos adversos , Estomia/instrumentação , Qualidade de Vida/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Neoplasias Retais/psicologia , Neoplasias Retais/cirurgia , Autogestão/métodos , Autogestão/psicologia
11.
Qual Life Res ; 29(4): 879-889, 2020 Apr.
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.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Cistectomia/economia , Cistectomia/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários/estatística & dados numéricos , Neoplasias da Bexiga Urinária/cirurgia , Adulto , Tomada de Decisões , Atenção à Saúde/economia , Etnicidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Minoritários , Medidas de Resultados Relatados pelo Paciente , Bexiga Urinária/cirurgia , Neoplasias da Bexiga Urinária/economia , Neoplasias da Bexiga Urinária/psicologia , Adulto Jovem
12.
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 , Objetivos , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Inquéritos e Questionários , Derivação Urinária/efeitos adversos , Derivação Urinária/métodos
13.
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.


Assuntos
Terapia Comportamental , Sobreviventes de Câncer/psicologia , Constipação Intestinal/dietoterapia , Dieta , Neoplasias Retais/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
14.
Psychooncology ; 27(3): 879-885, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29139176

RESUMO

OBJECTIVE: To measure incremental expenses to an oncologic surgical practice for delivering a community-based, ostomy nurse-led, small-group, behavior skills-training intervention to help bladder and colorectal cancer survivors understand and adjust to their ostomies and improve their health-related quality of life, as well as assist family caregivers to understand survivors' needs and provide appropriate supportive care. METHODS: The intervention was a 5-session group behavior skills training in ostomy self-management following the principles of the Chronic Care Model. Faculty included Wound, Ostomy, and Continence Nurses (WOCNs) using an ostomy care curriculum. A gender-matched peer-in-time buddy was assigned to each ostomy survivor. The 4-session survivor curriculum included the following: self-management practice and solving immediate ostomy concerns; social well-being; healthy lifestyle; and a booster session. The single family caregiver session was coled by a WOCN and an ostomy peer staff member and covered relevant caregiver and ostomate support issues. Each cohort required 8 weeks to complete the intervention. Nonlabor inputs included ostomy supplies, teaching materials, automobile mileage for WOCNs, mailing, and meeting space rental. Intervention personnel were employed by the University of Arizona. Labor expenses included salaries and fringe benefits. RESULTS: The total incremental expense per intervention cohort of 4 survivors was $7246 or $1812 per patient. CONCLUSIONS: A WOCN-led group self-help ostomy survivorship intervention provided affordable, effective, care to cancer survivors with ostomies.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais/cirurgia , Estomia , Educação de Pacientes como Assunto/economia , Autocuidado/economia , Autogestão/economia , Neoplasias da Bexiga Urinária/cirurgia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos
15.
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
16.
J Wound Ostomy Continence Nurs ; 45(6): 510-515, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30395126

RESUMO

PURPOSE: The purpose of this study was to describe clinical outcomes of patients with temporary ostomies in 3 Veterans Health Administration hospitals. DESIGN: Retrospective descriptive study, secondary analysis. SAMPLE AND SETTING: Veterans with temporary ostomies from 3 Veterans Health Administration hospitals who were enrolled in a previous study. The sample comprised 36 participants all were male. Their mean age was 67.05 ± 9.8 years (mean ± standard deviation). Twenty patients (55.6%) had ileostomies and 16 patients (44.4%) had colostomies. METHODS: This was a secondary analysis of data collected using medical record data. Variables examined included etiology for creation and type of ostomy, health-related quality of life, time to reversal, reasons for nonreversal, postoperative complications after reversal, and mortality in the follow-up period. RESULTS: Colorectal cancer and diverticular disease were the main reasons for temporary stoma formation. The reversal rate was 50%; the median time to reversal was 9 months in our sample; temporary ileostomies were reversed more often than temporary colostomies (P = .18). Comorbid conditions were identified as the main reason for nonreversal. Mortality was not significantly different between the reversal and nonreversal groups. No significant differences were reported with health-related quality-of-life parameters between reversal and nonreversal groups. CONCLUSIONS: This study identified that the proportion of temporary ostomies was limited to 50%. Complications during the index operation, medical comorbidities, and progression of cancer are the main reasons for nonreversal of temporary stomas. Study findings should be included in the counseling of patients who are likely to get intestinal stomas with temporary intention, and during consideration for later reversal of a stoma.


Assuntos
Estomia/métodos , Estomia/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Anastomose Cirúrgica/métodos , Neoplasias Colorretais/cirurgia , Colostomia/métodos , Colostomia/estatística & dados numéricos , Doenças Diverticulares/cirurgia , Humanos , Ileostomia/métodos , Ileostomia/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Qualidade de Vida , Estudos Retrospectivos , Inquéritos e Questionários , Estados Unidos , United States Department of Veterans Affairs/organização & administração , United States Department of Veterans Affairs/estatística & dados numéricos
17.
Ann Surg Oncol ; 24(12): 3596-3603, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28785900

RESUMO

BACKGROUND: Bowel function in long-term rectal cancer survivors with anastomosis has not been characterized adequately. We hypothesized that bowel function is associated with patient, disease, and treatment characteristics. METHODS: The cohort study included Kaiser Permanente members who were long-term (≥5 years) rectal cancer survivors with anastomosis. Bowel function was scored using the self-administered, 14-item Memorial Sloan-Kettering Cancer Center Bowel Function Index. Patient, cancer, and treatment variables were collected from the electronic medical chart. We used multiple regression to assess the relationship of patient- and treatment-related variables with the bowel function score. RESULTS: The study included 381 anastomosis patients surveyed an average 12 years after their rectal cancer surgeries. The total bowel function score averaged 53 (standard deviation, 9; range, 31-70, higher scores represent better function). Independent factors associated with worse total bowel function score included receipt of radiation therapy (yes vs. no: 5.3-unit decrement, p < 0.0001), tumor distance from the anal verge (≤6 cm vs. >6 cm: 3.2-unit decrement, p < 0.01), and history of a temporary ostomy (yes vs. no: 4.0-unit decrement, p < 0.01). One factor measured at time of survey was also associated with worse total bowel function score: ever smoking (2.3-unit decrement, p < 0.05). The regression model explained 20% of the variation in the total bowel function score. CONCLUSIONS: Low tumor location, radiation therapy, temporary ostomy during initial treatment, and history of smoking were linked with decreased long-term bowel function following an anastomosis. These results should improve decision-making about surgical options.


Assuntos
Anastomose Cirúrgica/efeitos adversos , Sobreviventes de Câncer , Efeitos Adversos de Longa Duração/etiologia , Estomia/efeitos adversos , Neoplasias Retais/cirurgia , Idoso , Estudos Transversais , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Complicações Pós-Operatórias , Prognóstico , Inquéritos e Questionários
18.
Qual Life Res ; 26(11): 3131-3142, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28677077

RESUMO

PURPOSE: Physical activity (PA) is positively associated with numerous health benefits among cancer survivors. This study examined insufficiently investigated relationships among PA, health-related quality of life (HRQOL), and bowel function (BF) in rectal cancer survivors. METHODS: RC survivors (n = 1063) ≥5 years from diagnosis in two Kaiser permanente regions were mailed a multidimensional survey to assess HRQOL and BF. PA was assessed by a modified Godin Leisure-Time Exercise Questionnaire. PA minutes were categorized into weighted categories based on guidelines: (1) not active (zero PA minutes); (2) insufficiently active (1-149 PA minutes); (3) meeting guidelines (150-299 PA minutes); and (4) above guidelines (≥300 PA minutes). Relationships of PA with HRQOL and BF were evaluated using multiple linear regression, stratified by sex and ostomy status for BF. Types of PA identified as helpful for BF and symptoms addressed were summarized. RESULTS: Response rate was 60.5%. Of 557 participants, 40% met or exceeded PA guidelines, 34% were not active, and 26% were insufficiently active. Aerobic activities, specifically walking and cycling, were most commonly reported to help BF. Higher PA was associated with better psychological wellbeing and multiple SF12 scales, worse BF scores in men with ostomies, and better BF scores in women. CONCLUSIONS: Meeting or exceeding PA guidelines was associated with higher HRQOL. Although the BF findings are exploratory, they suggest women may benefit from increased PA, whereas men with ostomies may face challenges that require more study. Identifying PA strategies that will lead to improved patient compliance and benefit are needed.


Assuntos
Sobreviventes de Câncer/psicologia , Exercício Físico/psicologia , Qualidade de Vida/psicologia , Neoplasias Retais/psicologia , Idoso , Feminino , Humanos , Masculino , Neoplasias Retais/mortalidade , Neoplasias Retais/patologia
19.
BMC Geriatr ; 17(1): 117, 2017 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-28577355

RESUMO

BACKGROUND: Numerous multidimensional assessment tools have been developed to measure frailty; however, the clinical feasibility of these tools is limited. We previously developed and validated an upper-extremity function (UEF) assessment method that incorporates wearable motion sensors. The purpose of the current study was to: 1) cross-sectionally validate the UEF method in a larger sample in comparison with the Fried index; 2) develop a UEF frailty index to predict frailty categories including non-frail, pre-frail, and frail based on UEF parameters and demographic information, using the Fried index as the gold standard; and 3) develop a UEF continuous score (points scores for each UEF parameter and a total frailty score) based on UEF parameters and demographic information, using the Fried index as the gold standard. METHODS: We performed a cross-sectional validation and index development study within the Banner Medical Center, Tucson, and Banner Sun Health Research Institute, Sun City, Arizona. Community-dwelling and outpatient older adults (≥60 years; n = 352; 132 non-frail, 175 pre-frail, and 45 frail based on Fried criteria) were recruited. For the UEF test, each participant performed a 20-s elbow flexion, within which they repetitively and rapidly flexed and extended their dominant elbow. Using elbow motion outcomes two UEF indexes were developed (categorical and score). The Fried index was measured as the gold standard. RESULTS: For the categorical index, speed of elbow flexion, elbow range of motion, elbow moment, number of flexion, speed variability and reduction within 20 s, as well as body mass index (BMI) were included as the pre-frailty/frailty predictor parameters. Results from 10-fold cross-validation showed receiver operator characteristic area under the curve of 0.77 ± 0.07 and 0.80 ± 0.12 for predicting Fried pre-frailty and frailty, respectively. UEF score (0.1 to 1.0) was developed using similar UEF parameters. CONCLUSIONS: We present an objective, sensor-based frailty assessment tool based on physical frailty features including slowness, weakness, exhaustion (muscle fatigue), and flexibility of upper-extremity movements. Within the current study, the method was validated cross-sectionally using the Fried index as the gold standard and the UEF categorical index and UEF frailty score were developed for research purposes and potentially for future clinical use.


Assuntos
Idoso Fragilizado , Fragilidade/diagnóstico , Fragilidade/fisiopatologia , Avaliação Geriátrica/métodos , Extremidade Superior/fisiopatologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Vida Independente , Masculino
20.
J Sex Med ; 13(7): 1071-9, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27318020

RESUMO

INTRODUCTION: Sexual dysfunction is a treatment sequela in survivors of rectal cancer (RC). Differences in health-related quality of life (HRQOL) can occur based on ostomy status (permanent ostomy vs anastomosis). AIM: To describe alterations in sexual function and HRQOL based on ostomy status in long-term (≥5 years) survivors of RC. METHODS: Survivors of RC with an ostomy (n = 181) or anastomosis (n = 394) were surveyed using validated HRQOL and functional status tools. We compared sexuality outcomes between the ostomy and anastomosis groups and reported differences adjusted for clinical and demographic characteristics. Qualitative data from one open-ended question on survivors' greatest challenges since their surgery were analyzed to explore sexuality, symptoms, and relationships. MAIN OUTCOME MEASURES: Whether sexually active, satisfaction with sexual activity, and select sexual dysfunction items from the Modified City of Hope Quality of Life-Colorectal. RESULTS: Survivors with a permanent ostomy were more likely to have been sexually inactive after surgery if it occurred before 2000 and experience dissatisfaction with appearance, interference with personal relationships and intimacy, and lower overall HRQOL. Female survivors of RC with an ostomy were more likely to have problems with vaginal strictures and vaginal pain after surgery that persisted at the time of the survey (≥5 years later). Radiation treatment, tumor stage, soilage of garments in bed, and higher Charlson-Deyo comorbidity scores were negatively associated with outcomes. Six qualitative themes emerged: loss of and decreased sexual activity, psychological issues with sexual activity, physical issues with sexual activity, partner rejection, ostomy interference with sexual activity, and positive experiences with sexuality. CONCLUSION: Sexual dysfunction is a common long-term sequela of RC treatment, with more problems observed in survivors with a permanent ostomy. This warrants widespread implementation of targeted interventions to manage sexual dysfunction and improve HRQOL for these survivors.


Assuntos
Estomia/psicologia , Qualidade de Vida/psicologia , Neoplasias Retais/psicologia , Comportamento Sexual/psicologia , Sobreviventes/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias Retais/cirurgia , Parceiros Sexuais/psicologia , Inquéritos e Questionários
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