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1.
Med Anthropol ; 39(1): 55-68, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31403821

RESUMO

Surviving colorectal cancer following ostomy surgery with an intestinal stoma presents numerous challenges to the cultural category of full adult personhood. The foremost is managing unpredictable bowel activity. The technical management of the ostomy facilitated by biomedical specialists, is essential for personhood realignment. This article focuses on how some female long-term cancer survivors manage and adapt to this new fecal habitus by mobilizing various assemblages of care - receiving care, continuing to provide particular gendered forms of care, and returning to caregiving roles. These interdependent practices of care realign personhood, or at the very least, minimize the assaults that having an ostomy presents to the cultural category of full adult personhood.

2.
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.

3.
Am J Hosp Palliat Care ; 37(1): 12-18, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31122027

RESUMO

BACKGROUND: Prospective, randomized trials are needed to determine optimal treatment approaches for palliative care problems such as malignant bowel obstruction (MBO). Randomization poses unique issues for such studies, especially with divergent treatment approaches and varying levels of equipoise. We report our experience accruing randomized patients to the Prospective Comparative Effectiveness Trial for Malignant Bowel Obstruction (SWOG S1316) study, comparing surgical and nonsurgical management of MBO. METHODS: Patients with MBO who were surgical candidates and had treatment equipoise were accrued and offered randomization to surgical or nonsurgical management. Patients choosing nonrandomization were offered prospective observation. Trial details are listed on www.clinicaltrials.gov (NCT #02270450). An accrual algorithm was developed to enhance enrollment. RESULTS: Accrual is ongoing with 176 patients enrolled. Most (89%) patients chose nonrandomization, opting for nonsurgical management. Of 25 sites that have accrued to this study, 6 enrolled patients on the randomization arm. Approximately 59% (20/34) of the randomization accrual goal has been achieved. Patient-related factors and clinician bias have been the most prevalent reasons for lack of randomization. An algorithm was developed from clinician experience to aid randomization. Using principles in this tool, repeated physician conversations discussing treatment options and goals of care, and a supportive team-approach has helped increase accrual. CONCLUSIONS: Experience gained from the S1316 study can aid future palliative care trials. Although difficult, it is possible to randomize patients to palliative studies by giving clinicians clear recommendations utilizing an algorithm of conversation, allotment of necessary time to discuss the trial, and encouragement to overcome internal bias.


Assuntos
Obstrução Intestinal/etiologia , Obstrução Intestinal/terapia , Neoplasias/complicações , Cuidados Paliativos/organização & administração , Projetos de Pesquisa , Algoritmos , Humanos , Obstrução Intestinal/cirurgia , Neoplasias/patologia , Seleção de Pacientes , Estudos Prospectivos
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.
Indian J Palliat Care ; 25(4): 556-561, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31673212

RESUMO

Background: Malayalam is the language spoken by 38.5 million people worldwide. There is no specific instrument to measure stoma-related quality of life (QOL) in Malayalam language. Aim: This study was designed to translate and validate the city of hope QOL (COH-QOL) Ostomy Questionnaire, which is a robust tool developed in English language. Materials and Methods: The instrument was translated to Malayalam, abiding by internationally accepted translation methodology. Trained interviewer (first author) administered the questionnaire to patients with stoma, who were visiting the stoma clinic. The reliability of the subscales and the total scores were established by calculating correlation coefficients. Convergent and divergent validity were evaluated by calculating Pearson's correlations of each item with its own scale and other scales. Results: Cronbach's alpha coefficients for all subscales were 0.70 or more. Similarly, split-half coefficients also were more than 0.70, which were acceptable. All subscales met the minimum acceptable standards of convergent and discriminant validity. Discriminant validity of all scores was less than convergent validity which suggests that there was no overlap between various constructs in measuring the same traits. The validation study of Malayalam translation of COH stoma questionnaire has shown that the tool is valid and reliable. Conclusion: The validation study of Malayalam translation of City of Hope Stoma questionnaire has shown the tool is valid and reliable.

6.
Eur J Cancer Care (Engl) ; 28(4): e13036, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30968987

RESUMO

OBJECTIVE: To evaluate the RE-AIM framework's effect on retention of participants and implementation outcomes of a 5-year cancer research education programme on psychosocial distress screening in cancer centres across the United States. METHODS: A one-group pre-/post-test design was used to evaluate the programme on participant retention and implementation outcomes at 6, 12 and 24 months after enrolling in the programme (baseline) and analysed using descriptive statistics. RESULTS: Seventy-two cancer centres participated in four cohorts. Participant retention was 100%. At baseline and 24 months, respectively, 52 (72%) and 64 (88%) of the cancer centres had formulated a psychosocial distress screening policy; 51 (71%) and 70 (98%) had started screening in more than one clinic/population; 15 (21%) and 45 (63%) had started auditing health records for documentation of screening. Each outcome rate improved at the cancer-centre level over the 24 months. CONCLUSION: RE-AIM can be used as a framework for cancer research education programmes. Future research is needed on the use of a randomised adaptive design to test the optimal support for implementation of quality care standards according to cancer centres' needs.


Assuntos
Institutos de Câncer , Disseminação de Informação , Neoplasias/psicologia , Feminino , Humanos , Ciência da Implementação , Masculino , Programas de Rastreamento
7.
Breast Cancer (Auckl) ; 13: 1178223419835547, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31019366

RESUMO

Purpose: The purpose of this study is to report the initial validation process for using the Dermatology Life Quality Index (DLQI) for radiodermatitis of the breast. Methods: This is an additional analysis of a study designed to report a longitudinal study in skin-related and global quality of life in women with breast radiodermatitis. A total of 40 participants completed the DLQI instrument weekly while receiving external radiotherapy of the female breast. At week 5 on treatment, 31 (78%) participants provided narrative feedback on how each DLQI item affected her life. Agreement between participant DLQI numerical ratings and narrative feedback on items was assessed. Construct validity was estimated using principal component analysis (PCA). Internal consistency of the DLQI was assessed using Cronbach alpha. Results: Percentage of agreement between participant DLQI ratings and narratives ranged from 71% to 98%. Each participant responded "no" to the work and study item leading to zero variance and removal from our analyses. Principal component analysis supported the inclusion of all of the remaining items. The DLQI with nine remaining items demonstrated moderately good internal consistency (α = .69). Conclusions: The results of our examination of the DLQI when used for breast radiodermatitis are promising. Next steps include additional larger studies among more diverse populations.

8.
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.

9.
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
10.
Asia Pac J Oncol Nurs ; 6(1): 50-56, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30599016

RESUMO

Objective: Little is known about the skin-related quality of life (QOL) among women receiving external radiotherapy (EBT) and who experience breast radiodermatitis. This pilot study aimed to describe the thoughts and experiences of women experiencing breast radiodermatitis of the breast at a comprehensive community cancer program. Methods: A printed survey was used to solicit feedback on the Dermatology Life Quality Index (DLQI) during the 5th week of EBT. An open-ended question inquired which DLQI-related issue was most important and why. A directed qualitative content analysis was conducted on the narrative responses. Results: Twenty-eight women provided a response to the "most important" question. Sixty narratives led to the identification of 35 codes and six themes during content analysis. Themes included perspectives on having radiodermatitis, sensations caused by radiodermatitis, knowledge, and preparation for radiotherapy, prevention of radiodermatitis, emotions induced by skin changes, and physical appearance of the breast skin. Conclusions: The study results provide a glimpse into the perceptions of skin-related QOL among community-dwelling women who experienced breast radiodermatitis. Some women expressed that radiodermatitis had a profound impact on their QOL while other were surprised that EBT was easy compared to chemotherapy. Our findings parallel those found in a previous study conducted in an urban setting. Results provide insight into the thoughts and needs of women undergoing breast EBT. Assessing individual differences in skin-related QOL can provide needed information for tailoring care to the unique needs of each woman. Additional studies focusing specifically on skin-related QOL are needed.

11.
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
12.
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.

13.
Clin J Oncol Nurs ; 22(3): E85-E91, 2018 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-29781464

RESUMO

BACKGROUND: Psychosocial distress screening is a quality care standard in cancer care. Screening implementation may be facilitated by an educational program that uses goals to evaluate progress over time. OBJECTIVES: This article describes the content and design of the Screening for Psychosocial Distress Program (SPDP), reports on its delivery to 36 paired participants, and evaluates its effects on distress screening activities and goals. METHODS: The SPDP used a one-group pre-/post-test design. It was delivered at 2 workshops and 10 conference calls during a two-year period. Data on screening and goal achievement were collected at 6, 12, and 24 months. Data on the quality of dyads' relationships were collected at 24 months. FINDINGS: At 24 months, all 18 dyads had begun screening. Dyads reported working effectively together and being supportive of the other member of the dyad while achieving their goals for implementing psychosocial distress screening.


Assuntos
Educação Médica/organização & administração , Neoplasias/psicologia , Enfermagem Oncológica/educação , Enfermagem Oncológica/métodos , Qualidade de Vida/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/terapia , Adulto , Currículo , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos
14.
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
15.
Eur J Oncol Nurs ; 33: 22-27, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29551173

RESUMO

PURPOSE: The purpose of this pilot study was to explore the relationship between skin-related quality of life (SR-QOL) and global quality of life (G-QOL) among women experiencing breast radiodermatitis, measure change in SR-QOL and G-QOL between the start and fifth week on radiotherapy, and examine the trend in SR-QOL and severity of radiodermatitis over time on treatment. METHODS: A descriptive longitudinal study using repeated measurements was implemented. Forty women undergoing whole breast 3-dimensional conformal radiotherapy at a comprehensive community cancer center completed the Dermatology Life Quality Index (DLQI) weekly and Quality of Life-Breast Cancer Patient Version at baseline before and at five weeks on radiotherapy. Skin toxicity was measured weekly using the Radiation Therapy Oncology Group (RTOG) Acute Radiation Morbidity Scoring Criteria-Skin scale. A Kendall's tau correlation explored the relationship between measures of SR-QOL and G-QOL. Paired t-tests measured the change in SR-QOL and G-QOL from baseline to fifth week on radiotherapy. The mean of the baseline and weekly total DLQI and RTOG scores was calculated and plotted on a graph. RESULTS: In general, SR-QOL and G-QOL were highly correlated. SR-QOL changed profoundly (p < .001) while G-QOL did not change (p = .55) between baseline and five weeks on radiotherapy. SR-QOL and radiodermatitis steadily worsened over time. CONCLUSIONS: Radiation-induced skin toxicity has a major impact on SR-QOL but not G-QOL. This study provides much-needed scientific evidence to inform a larger future study in a community setting. Recommendations for future studies include inclusion of a skin-sensitive survey of radiodermatitis; larger, more diverse community-dwelling sample.


Assuntos
Neoplasias da Mama/radioterapia , Fármacos Dermatológicos/uso terapêutico , Qualidade de Vida/psicologia , Radiodermatite/tratamento farmacológico , Radiodermatite/etiologia , Radioterapia/efeitos adversos , Adulto , Idoso , Feminino , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Projetos Piloto , Inquéritos e Questionários , Estados Unidos
16.
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
17.
Support Care Cancer ; 26(2): 529-537, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28844086

RESUMO

PURPOSE: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. METHODS: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. RESULTS: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. CONCLUSIONS: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.


Assuntos
Cuidadores/psicologia , Neoplasias Colorretais/terapia , Estomia/psicologia , Pesquisa Qualitativa , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Inquéritos e Questionários , Sobreviventes/psicologia
18.
Contemp Clin Trials ; 64: 167-172, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29051047

RESUMO

PURPOSE: An ostomy adversely affects health-related quality of life (HRQOL) in a diverse population of cancer survivors and their caregivers. Hit-or-miss ostomy care, nurse counseling, and community referral have been the primary modes of self-management education and support in the peri-operative setting. Few evidence-based, systematic ostomy self-management programs are available to ensure optimal post-operative care. This paper describes the study design of a telehealth-based Ostomy Self-management Training (OSMT) program for cancer survivors and their caregivers. METHODS: The study is a three-year, randomized trial that tests the effectiveness of the OSMT program on survivor activation, self-efficacy, and HRQOL. The intervention integrates goal setting and problem-solving approaches to enhance survivor activation and self-efficacy to carry out ostomy care. The curriculum is delivered via four group sessions administered by trained ostomy certified nurses (WOCNs) and peer ostomates. An additional session is offered to caregivers to address their needs in relation to ostomy care. Telehealth approaches through videoconferencing are used to enhance program delivery to participants in three different geographic areas across two time zones. Participants join sessions via real-time videoconferencing from their homes. CONCLUSIONS: The OSMT program has high potential to make a positive impact on the unique physical, psychological, social, and spiritual needs of cancer survivors living with a permanent ostomy. The study design, process, and telehealth approach contributes to the success of future dissemination efforts of the intervention into diverse clinical and community settings.


Assuntos
Sobreviventes de Câncer/educação , Estomia/métodos , Autogestão/educação , Telemedicina/organização & administração , Humanos , Relações Interpessoais , Saúde Mental , Enfermeiras e Enfermeiros/organização & administração , Estomia/psicologia , Qualidade de Vida , Projetos de Pesquisa , Autoeficácia
19.
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
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