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1.
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
2.
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.

3.
Cancer Epidemiol Biomarkers Prev ; 28(5): 996-999, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30967418

RESUMO

BACKGROUND: Relatively little is known about factors associated with long-term survival (LTS) following a diagnosis of ovarian cancer. METHODS: We conducted a retrospective study of high-grade serous ovarian cancer (HGSOC) to explore predictors of LTS (defined as ≥7 years of survival) using electronic medical record data from a network of integrated health care systems. Multivariable logistic regression with forward selection was used to compare characteristics of women who survived ≥7 years after diagnosis (n = 148) to those who died within 7 years of diagnosis (n = 494). RESULTS: Our final model included study site, age, stage at diagnosis, CA-125, comorbidity score, receipt of chemotherapy, BMI, and four separate comorbid conditions: weight loss, depression, hypothyroidism, and liver disease. Of these, only younger age, lower stage, and depression were statistically significantly associated with LTS. CONCLUSIONS: We did not identify any new characteristics associated with HGSOC survival. IMPACT: Prognosis of ovarian cancer generally remains poor. Large, pooled studies of ovarian cancer are needed to identify characteristics that may improve survival.

4.
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
5.
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
6.
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.

7.
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
8.
Perm J ; 22: 17-022, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29236653

RESUMO

CONTEXT: Rectal cancer and its treatment impair survivors' productivity. OBJECTIVE: To assess determinants of market and nonmarket employment, job search, volunteering, and homemaking among survivors five years or longer after diagnosis. DESIGN: We mailed questionnaires to 1063 survivors who were members of Kaiser Permanente (Northern California, Northwest) during 2010 and 2011. MAIN OUTCOME MEASURES: Productive activities, functional health status, and bowel management at the time of the survey. RESULTS: Response rate was 60.5% (577/953). Higher comorbidity burdens were associated with lower productivity for men and women rectal cancer survivors. Productive survivors were younger and had lower disease stage and age at diagnosis, higher household income and educational attainment, and fewer comorbidity burdens and workplace adjustments than did nonproductive survivors (p < 0.05 each; 2-sided). Productive rectal cancer survivors were evenly split by sex. CONCLUSION: Staying productive is associated with better mental health for rectal cancer survivors. Rectal cancer survivors with multiple chronic conditions, higher disease stage, lower productive activities, and older age need better access to medical care and closer monitoring of the quality of their care, including self-care. To capture the full extent of the involvement of survivors in all types of productive activities, research should routinely include measures of employment, searching for employment, homemaking, and volunteering. Counting market and nonmarket productive activities is innovative and recognizes the continuum of contributions survivors make to families and society. Health care systems should routinely monitor rectal cancer survivors' medical care access, comorbidities, health-related quality of life, and productive activities.


Assuntos
Atividades Cotidianas , Sobreviventes de Câncer/estatística & dados numéricos , Emprego/estatística & dados numéricos , Qualidade de Vida , Neoplasias Retais , Adulto , Idoso , California , Nível de Saúde , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Fatores de Risco , Sobrevivência , Voluntários/estatística & dados numéricos
9.
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
11.
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/psicologia , Qualidade de Vida/psicologia , Neoplasias Retais/psicologia , Idoso , Feminino , Humanos , Masculino , Neoplasias Retais/mortalidade , Neoplasias Retais/patologia
12.
Perm J ; 21: 16-011, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28241904

RESUMO

CONTEXT: Cancer patients' participation in social, recreational, and civic activities is strongly associated with quality of life (QOL), but these activities are not well integrated into cancer survivorship research or interventions. OBJECTIVE: Test the hypothesis that for long-term (≥ 5 years) survivors of rectal cancer, clinical factors (type of surgery and bowel function) are associated with long-term participation in activities and that participation in activities is associated with long-term QOL. DESIGN: Observational study with longitudinal and cross-sectional components. MAIN OUTCOME MEASURES: Participation in activities and QOL. Tumor registry records were used to identify patients and obtain clinical data; surveys assessed participation and QOL. Using general linear models, we analyzed participation in activities in relation to type of surgery and bowel function after adjustment for potential confounders. We analyzed overall QOL relative to participation in activities after adjustment. RESULTS: A total of 567 rectal cancer survivors completed a mailed questionnaire. Overall response rate was 61%. The type of operation (p < 0.0001), receipt of radiation therapy (p = 0.002), and bowel function (p < 0.0001) were associated with participation in activities. Participation in activities was the strongest predictor of QOL (p < 0.0001), explaining 20% of the variance (R2) in QOL, with all other variables together accounting for another 18% of the variance. CONCLUSION: The importance of participation in activities on rectal cancer survivors' QOL is underappreciated. We recommend revising QOL instruments used in cancer care and research to include questions about participation in activities. Interventions should address maintenance of preferred activities and adoption of new, fulfilling activities.


Assuntos
Defecação , Qualidade de Vida , Recreação , Neoplasias Retais/cirurgia , Reto/cirurgia , Participação Social , Sobreviventes , Idoso , Canal Anal/cirurgia , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino , Estomia , Neoplasias Retais/complicações , Inquéritos e Questionários
13.
Dis Colon Rectum ; 59(11): 1019-1027, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27749476

RESUMO

BACKGROUND: Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. OBJECTIVE: The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. DESIGN: This was an observational study with a cross-sectional survey. SETTINGS: The study included members of Kaiser Permanente Northern California and Northwest health plans. PATIENTS: A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. MAIN OUTCOME MEASURES: The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. RESULTS: The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p < 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). LIMITATIONS: Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare-eligible population), and non-English-speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. CONCLUSIONS: Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).


Assuntos
Colectomia , Efeitos Adversos de Longa Duração , Estomia , Qualidade de Vida , Neoplasias Retais , Sobreviventes/psicologia , Idoso , Idoso de 80 Anos ou mais , Colectomia/efeitos adversos , Colectomia/métodos , Colectomia/psicologia , Estudos Transversais , Feminino , Inquéritos Epidemiológicos , Humanos , Efeitos Adversos de Longa Duração/etiologia , Efeitos Adversos de Longa Duração/psicologia , Masculino , Pessoa de Meia-Idade , Estomia/métodos , Estomia/psicologia , Preferência do Paciente/estatística & dados numéricos , Neoplasias Retais/psicologia , Neoplasias Retais/cirurgia , Estados Unidos
14.
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
15.
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
16.
Psychooncology ; 25(11): 1350-1356, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-26365584

RESUMO

OBJECTIVES: Types of surgery for rectal cancer (RC), including permanent ostomy (PO) or temporary ostomy followed by anastomosis (TO) or initial anastomosis (AN), can affect psychological and financial well-being during active treatment. However, these relationships have not been well studied among long-term survivors (≥5 years post-diagnosis). METHODS: A mailed survey with 576 long-term RC survivors who were members of Kaiser Permanente was conducted in 2010-2011. Prevalence of current depression was ascertained using a score of ≤45.6 on the Short Form-12 version 2 mental component summary. Perceived financial burden was assessed using a Likert scale ranging from 0 (none) to 10 (severe). Regression analyses were used to measure associations after adjustment for covariates. RESULTS: The overall prevalence of depression was 24% among RC survivors with the highest prevalence among those with a history of PO (31%). The adjusted odds of depression among TO and AN survivors were lower than that among PO survivors, 0.42 (CI95% 0.20-0.89) and 0.59 (CI95% 0.37-0.93), respectively. Twenty-two percent perceived moderate-to-high current financial burden (≥4 points). PO survivors also reported higher mean financial burden than AN survivors (2.6 vs. 1.6, respectively; p = 0.002), but perceived burden comparably to TO survivors (2.3). Self-reported depression was associated with higher perceived financial burden (p < 0.001); surgical procedure history did not modify this relationship. CONCLUSIONS: Depression was reported frequently among these long-term RC survivors, particularly among PO survivors. Depression was associated with greater perception of financial burden. Screening for depression and assessing financial well-being might improve care among long-term RC survivors.Copyright © 2015 John Wiley & Sons, Ltd.


Assuntos
Sobreviventes de Câncer/psicologia , Depressão/psicologia , Qualidade de Vida/psicologia , Neoplasias Retais/economia , Neoplasias Retais/psicologia , Adulto , Idoso , Efeitos Psicossociais da Doença , Depressão/economia , Feminino , Acesso aos Serviços de Saúde/economia , Humanos , Masculino , Pessoa de Meia-Idade , Estomia/psicologia , Autorrelato
17.
Paediatr Perinat Epidemiol ; 29(6): 562-6, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26367856

RESUMO

BACKGROUND: Birth certificate data overestimate national preterm births because a high percentage of last menstrual period (LMP) dates have errors. Study goals were to determine: (i) To what extent errors in transfer of birthweight and LMP date from medical records to birth certificates contribute to implausibly high birthweight-for-gestational-age births; (ii) What percentage of implausible births would be resolved if the clinical estimate (CE) from birth certificates were used instead of LMP-based gestational age, and with what degree of certainty; and (iii) Of those not resolved, what percentage had a medical explanation. METHODS: Medical records and birth certificates for all singleton infants with implausibly high birthweight-for-gestational-age based on LMP delivered in the Kaiser Permanente Northwest system in Oregon during 1998-2007 were examined. Percentages of implausible records resolved under various scenarios were calculated. RESULTS: A total of 100 births with implausibly high birthweight-for-gestational age combinations were identified. When LMP date and birthweight from medical records were used instead of from birth certificates, 31% of births with implausible combinations were resolved. Substituting the CE on the birth certificate for the LMP date resolved 92%. Of the latter, the clinician's gestational age estimate in the medical record was obtained in early pregnancy in 72%. Five of the eight births with unresolved implausible combinations were to mothers with diabetes; the remaining three had no documented medical explanation. CONCLUSIONS: In this study, use of the birth certificate CE rather than the LMP resulted in a clinically reliable reclassification for the majority of implausible birthweight-for-gestational age deliveries.


Assuntos
Declaração de Nascimento , Peso ao Nascer , Idade Gestacional , Criança Pós-Termo , Registros Médicos , Nascimento Prematuro/epidemiologia , Adulto , Feminino , Humanos , Recém-Nascido , Doenças do Recém-Nascido , Masculino , Oregon/epidemiologia , Gravidez , Resultado da Gravidez
18.
Ann Surg Oncol ; 22(13): 4317-24, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26159443

RESUMO

BACKGROUND: Bowel dysfunction is a known complication of colorectal cancer (CRC) surgery. Poor bowel control has a detrimental impact on survivors' health-related quality of life (HRQOL). This analysis describes the dietary and behavioral adjustments used by CRC survivors to manage bowel dysfunction and compares adjustments used by survivors with permanent ostomy to those with anastomosis. METHODS: This mixed-methods analysis included pooled data from several studies that assessed HRQOL in CRC survivors. In all studies, CRC survivors with or without permanent ostomies (N = 856) were surveyed using the City of Hope Quality of Life Colorectal Cancer tool. Dietary adjustments were compared by ostomy status and by overall HRQOL score (high vs. low). Qualitative data from 13 focus groups and 30 interviews were analyzed to explore specific strategies used by survivors to manage bowel dysfunction. RESULTS: CRC survivors made substantial, permanent dietary, and behavioral adjustments after surgery, regardless of ostomy status. Survivors who took longer after surgery to become comfortable with their diet or regain their appetite were more likely to report worse HRQOL. Adjustments to control bowel function were divided into four major strategies: dietary adjustments, behavioral adjustments, exercise, and medication use. CONCLUSIONS: CRC survivors struggled with unpredictable bowel function and may fail to find a set of management strategies to achieve regularity. Understanding the myriad adjustments used by CRC survivors may lead to evidence-based interventions to foster positive adjustments after surgery and through long-term survivorship.


Assuntos
Neoplasias Colorretais/complicações , Dieta , Gastroenteropatias/prevenção & controle , Estomia/efeitos adversos , Complicações Pós-Operatórias , Qualidade de Vida , Sobreviventes/psicologia , Idoso , Neoplasias Colorretais/cirurgia , Gerenciamento Clínico , Feminino , Grupos Focais , Seguimentos , Gastroenteropatias/etiologia , Gastroenteropatias/psicologia , Humanos , Masculino , Estadiamento de Neoplasias , Prognóstico , Inquéritos e Questionários , Taxa de Sobrevida
19.
Qual Life Res ; 23(10): 2831-40, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24890826

RESUMO

PURPOSE: Examination of reliability and validity of a specialized health-related quality of life questionnaire for rectal cancer (RC) survivors (≥5 years post-diagnosis). METHODS: We mailed 1,063 Kaiser Permanente (KP) RC survivors (313 ostomy and 750 anastomosis) a questionnaire containing the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O), SF-12v2, Duke-UNC Functional Social Support Questionnaire (FSSQ), and Memorial Sloan-Kettering Cancer Center Bowel Function Index (BFI). We adapted certain BFI items for use by subjects with intestinal ostomies. We evaluated reliability for all instruments with inter-item correlations and Cronbach's alpha. We assessed construct validity only for the BFI in the ostomy group, because such use has not been reported. RESULTS: The overall response rate was 60.5 % (577 respondents/953 eligible). Compared with non-responders, participants were on average 2 years younger and more likely non-Hispanic white, resided in educationally non-deprived areas, and had KP membership through a group. The mCOH-QOL-O, SF-12, and FSSQ were found to be highly reliable for RC survivors. In the ostomy group, BFI Urgency/Soilage and Dietary subscales were found to be reliable, but Frequency was not. Factor analysis supported the construct of Urgency/Soilage and Dietary subscales in the ostomy group, although one item had a moderate correlation with all three factors. The BFI also demonstrated good concurrent validity with other instruments in the ostomy group. CONCLUSIONS: With possible exception of the BFI Frequency subscale in populations with ostomies, components of our survey can be used for the entire population of RC survivors, no matter whether they received anastomosis or ostomy.


Assuntos
Estomia/psicologia , Qualidade de Vida , Neoplasias Retais/mortalidade , Sobreviventes/psicologia , Adulto , Idoso , Anastomose Cirúrgica/psicologia , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários
20.
Matern Child Health J ; 17(6): 1016-24, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22855007

RESUMO

The objective of the study was to assess if small- and large-for gestational age term infants have greater health care utilization during the first year of life. The sample included 28,215 singleton term infants (37-42 weeks) without major birth defects delivered from 1998 through 2007 and continuously enrolled at Kaiser Permanente Northwest for 12 months after delivery. Birth weight for gestational age was categorized into 3 levels: <10th percentile (SGA), 10-90th percentile (AGA), >90th percentile (LGA). Length of delivery hospitalization, re-hospitalizations and sick/emergency room visits were obtained from electronic records. Logistic regression models estimated associations between birth weight category and re-hospitalization. Generalized linear models estimated adjusted mean number of sick/emergency visits. Among term infants, 6.2 % were SGA and 13.9 % were LGA. Of infants born by cesarean section, SGA infants had 2.7 higher odds [95 % 1.9, 3.8] than AGA infants of staying ≥5 nights during the delivery hospitalization; of those born vaginally, SGA infants had 1.5 higher adjusted odds [95 % 1.1, 2.1] of staying ≥4 nights. LGA compared to AGA infants had higher odds of re-hospitalization within 2 weeks of delivery [OR 1.25, 95 % CI 0.99, 1.58] and of a length of stay ≥4 days during that hospitalization [OR 2.6, 95 % CI 1.3, 5.0]. The adjusted mean number of sick/emergency room visits was slightly higher in SGA (7.8) than AGA (7.5) infants (P < .05). Term infants born SGA or LGA had greater health care utilization than their counterparts, although the increase in utilization beyond the initial delivery hospitalization was small.


Assuntos
Serviços de Saúde da Criança/estatística & dados numéricos , Macrossomia Fetal , Recém-Nascido Pequeno para a Idade Gestacional , Adolescente , Adulto , Parto Obstétrico/métodos , Feminino , Seguimentos , Idade Gestacional , Humanos , Lactente , Recém-Nascido , Tempo de Internação/estatística & dados numéricos , Tempo de Internação/tendências , Modelos Logísticos , Masculino , Medicaid , Oregon , Gravidez , Resultado da Gravidez , Fatores Socioeconômicos , Fatores de Tempo , Estados Unidos , Washington , Adulto Jovem
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