Creation of a colostomy in colorectal (CRC) cancer patients results in a loss of control over bowel evacuation. The only way to re-establish some control is through irrigation, a procedure that involves instilling fluid into the bowel to allow for gas and fecal output. This article reports on irrigation practices of participants in a large, multi-site, multi-investigator study of health-related quality of life (HR-QOL) in long term CRC survivors. Questions about irrigation practices were identified in open-ended questions within a large HR-QOL survey and in focus groups of men and women with high and low HR-QOL. Descriptive data on survivors were combined with content analysis of irrigation knowledge and practices. Patient education and use of irrigation in the United States has decreased over the years, with no clear identification of why this change in practice has occurred. Those respondents who used irrigation had their surgery longer ago, and spent more time in colostomy care than those that did not irrigate. Reasons for the decrease in colostomy irrigation are unreported and present priorities for needed research.
Colostomy; colorectal cancer; irrigation; bowel control
Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self Management Program, which was informed by (1) evidence on published quality of life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies.
The purpose of this paper is to describe persistent ostomy-specific concerns and adaptations in long-term (> 5 years) colorectal cancer survivors with ostomies.
Subjects and Settings
Thirty three colorectal cancer survivors who participated in eight gender- and health related Quality of life (HRQOL) stratified focus groups and 130 colorectal cancer survivors who provided written comments to two open-ended questions on ostomy location and pouch problems participated in the study. Data were collected on health maintenance organization members in Oregon, southwestern Washington and northern California.
Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focus groups were recorded, transcribed and analyzed using content analysis. Written content from the open-ended questions was derived from a mailed questionnaire on health related quality of life in survivors with ostomies and analyzed using content analysis.
Discussions related to persistent ostomy-related issues more than 5 years after formation were common. Persistent ostomy-related issues were focused on clothing restrictions and adaptations, dietary concerns, issues related to ostomy equipment and self-care, and the constant need to find solutions to adjust and re-adjust to living with an ostomy.
Ostomy-specific concerns persist 5 years and more for long-term colorectal cancer survivors after initial ostomy formation. Adaptations tend to be individualized and based on trial and error. Findings underscore the need to develop long-term support mechanisms that survivors can access to promote better coping and adjustment to living with an ostomy.
Weight gain can cause retraction of an intestinal stoma, possibly resulting in difficulty with wafer and pouch fit, daily care challenges, and discomfort. This cross-sectional study examined the association between body mass index (BMI) and ostomy-related problems among long-term (>5 years post-diagnosis) colorectal cancer (CRC) survivors.
Materials and Methods
CRC survivors from three Kaiser Permanente Regions completed a mailed survey. The response rate for those with an ostomy was 53% (283/529). Questions included stoma-related problems and time to conduct daily ostomy care. Poisson regression evaluated associations between report of problems and change in BMI. Our analysis sample included 235 survivors.
Sample was 76% ≥65 years of age. Since their surgeries, BMI remained stable in 44% (ST), decreased in 20% (DE), and increased in 35% (IN) of survivors. Compared to ST, male IN (RR 2.15 [1.09–4.25]) and female DE (RR 5.06 [1.26–25.0]) were more likely to spend more than 30 minutes per day on stoma care. IN (vs. ST) were more likely to report interference with clothing (RR 1.51 [1.06–2.17]) and other stoma-related problems (RR 2.32 [1.30–4.14]). Survivors who were obese at time of survey were more likely to report interference with clothing (RR 1.88 [1.38–2.56]) and other stoma-related problems (RR 1.68 [1.07–2.65]).
A change in BMI is associated with ostomy-related problems among long-term CRC survivors. Equipment and care practices may need to be adapted for changes in abdominal shape. Health care providers should caution that a significant increase or decrease in BMI may cause ostomy-related problems.
Colorectal cancer; ostomy; stoma; BMI; body mass index
Health professional education; Cognitive Behavioral Therapy; Cancer survivorship
Nutritional deficiencies are experienced by most adults with advanced lung cancer during the course of their disease and treatment. Well-nourished individuals tolerate cancer treatment with less morbidity, mortality, and increased response to treatment as compared to those who are malnourished. Novel anti-cancer therapies cause many deficits that impact nutritional and functional status during the treatment process. Nutritional deficits include weight loss, malnutrition, and anorexia-cachexia. Anorexia-Cachexia is complex, not well understood and seen in many solid tumors in late stage disease. Assessing adequate nutrition is one of the most challenging problems for nurses, their patients and patient's families. The purpose of this review is to define and describe cancer anorexia-cachexia in late stage lung cancer, through case presentation, and to describe palliative strategies for prevention, assessment, and management in the palliative care setting. Early assessment for nutritional imbalances must be done regularly with re-evaluation for intervention effectiveness and should continue throughout the illness trajectory. Management of adverse effects of cancer and cancer-related treatment is critical to improving quality of life. Palliative care and hospice nurses play a critical role in early assessment, education and prevention to support nutritional needs for patients and their families.
Anorexia; Cachexia; Cachexia- Anorexia Syndrome
The purpose of this paper is to report the findings of a study of hematopoietic cell transplant patients, describing the needs of allogeneic transplant patients at the time of discharge in regard to their functional status, quality of life (QOL), and caregiver information and comparing these needs across a number of sociodemographic, disease, and treatment characteristics. The findings of this study are part of a larger mixed-methods study, representing one data time point of the larger study.
This paper will discuss the baseline data collected at the time of discharge for 282 allogeneic transplant patients, which include sociodemographic data combined with disease, treatment, functional status, and QOL data to present a comprehensive portrait of the transplant patient at discharge.
Mean age was 48 years, males represented 52%, and 22% of the patients were Hispanic. The majority of the patients had acute leukemia (55%), were diagnosed within the last 3 years, and had matched unrelated (52%) transplants. The time from transplant to discharge averaged 30 days. Mean scores for QOL (scale = 1–10, with 10 = best QOL) included a low score of 5.7 for both psychological and social well-being, 6.3 for overall QOL, and 7.1 for both physical and spiritual well-being. Males had significantly higher QOL than females, as did non-Hispanics. Patients with Hodgkin’s disease had significantly lower overall QOL scores.
Our results highlight the physical, psychological, social, and spiritual challenges which present for patients and their caregivers at the time of hospital discharge following allogeneic transplant.
Allogeneic transplant; Discharge status; Quality of life
To describe the clinical, education and research roles of professional nurses caring for family caregivers.
Review of literature and websites on the professional nursing role and family caregivers.
The growing number of family caregivers of cancer patients need education and support. The professional oncology nurse is best suited to assess, teach and support these family caregivers, as well as contribute to the evidence-base of these areas of practice.
Implications for Nursing Practice
Professional nurses caring for oncology patients need to expand their role to include additional support and education of family caregivers.
Professional nursing; nursing role; family caregiving
The Institute of Medicine (IOM) 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition (In M. Hewitt, S. Greenfield and E. Stovall (Eds.), (pp. 9–186). Washington DC: The National Academies Press, 2006) identifies the key components of care that contribute to quality of life for the cancer survivor. As cancer survivorship care becomes an important part of quality cancer care oncology professionals need education to prepare themselves to provide this care. Survivorship care requires a varied approach depending on the survivor population, treatment regimens and care settings. The goal of this program was to encourage institutional changes that would integrate survivorship care into participating centers. An NCI-funded educational program: Survivorship Education for Quality Cancer Care provided multidiscipline two-person teams an opportunity to gain this important knowledge using a goal-directed, team approach. Educational programs were funded for yearly courses from 2006 to 2009. Survivorship care curriculum was developed using the Quality of Life Model as the core around the IOM recommendations. Baseline data was collected for all participants. Teams were followed-up at 6, 12 and 18 months postcourse for goal achievement and institutional evaluations. Comparison data from baseline to 18 months provided information on the 204 multidiscipline teams that participated over 4 years. Teams attended including administrators, social workers, nurse practitioners, registered nurses, physicians and others. Participating centers included primarily community cancer centers and academic centers followed by pediatric centers, ambulatory/physician offices and free standing cancer centers. Statistically significant changes at p=<0.05 levels were seen by 12 months postcourse related to the effectiveness, receptiveness and comfort of survivorship care in participant settings. Institutional assessments found improvement in seven domains of care that related to institutional change. This course provided education to participants that led to significant changes in survivorship care in their settings.
Cancer survivorship education; Institutional change; Quality of life; Institutional survey; Institutional assessment
Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.
One NCI-designated comprehensive cancer center in Southern California.
A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued.
All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables.
Main Research Variables
Caregiver burden, skills preparedness, psychological distress, and QOL.
Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score.
Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time.
Implications for Nursing
Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.
The purpose of this paper is to describe recruitment and retention of vulnerable hematopoetic cell transplant patients participating in a longitudinal intervention study. Utilizing Swanson’s Theory of Caring Model nurse researchers facilitated patients’ visualization of how study participation could enable them to share their experience and further clinical insights.
Immunohistochemistry (IHC) for MLH1, MSH2, MSH6, and PMS2 protein expression and microsatellite instability (MSI) are well-established tools to screen for Lynch syndrome (LS). Although many cancer centers have adopted these tools as reflex LS screening after a colorectal cancer diagnosis, the standard of care has not been established, and no formal studies have described this practice in the United States. The purpose of this study was to describe prevalent practices regarding IHC/MSI reflex testing for LS in the United States and the subsequent follow-up of abnormal results.
Materials and Methods
A 12-item survey was developed after interdisciplinary expert input. A letter of invitation, survey, and online-survey option were sent to a contact at each cancer program. A modified Dillman strategy was used to maximize the response rate. The sample included 39 National Cancer Institute–designated Comprehensive Cancer Centers (NCI-CCCs), 50 randomly selected American College of Surgeons–accredited Community Hospital Comprehensive Cancer Programs (COMPs), and 50 Community Hospital Cancer Programs (CHCPs).
The overall response rate was 50%. Seventy-one percent of NCI-CCCs, 36% of COMPs, and 15% of CHCPs were conducting reflex IHC/MSI for LS; 48% of the programs used IHC, 14% of the programs used MSI, and 38% of the programs used both IHC and MSI. One program used a presurgical information packet, four programs offered an opt-out option, and none of the programs required written consent.
Although most NCI-CCCs use reflex IHC/MSI to screen for LS, this practice is not well-adopted by community hospitals. These findings may indicate an emerging standard of care and diffusion from NCI-CCC to community cancer programs. Our findings also described an important trend away from requiring written patient consent for screening.
Systematic studies on the specific symptom experience in children with advanced cancer are limited.
To examine common symptoms and to explore commonly occurring symptoms over time.
A prospective and longitudinal study design was used. Data were collected at 10 data points from 60 children over a 5-month period. Children ranged from 6 to 17 years old, spoke English or Spanish, were diagnosed with advanced cancer, and were receiving health care in one of four Southern California hospitals. Nurses documentation of symptoms were examined.
Sample: Children 52% 6–12 years and 48% 13–17 years; 42% female, 58% male; 55% Latino and 30% Caucasian. Pain, nausea, drowsiness and energy loss were reported by children in over 50% of the interviews. Children’s and nurses’ reports of symptoms were similar except children reported significantly more frequency and intensity of pain.
Children with advanced cancer were able to report and describe their symptoms. There were few differences by gender, age, and ethnicity.
Implications for Practice
It is important that children’s symptoms are clearly communicated to nurses and these study findings may be used to anticipate and manage the symptoms experienced by children with advanced cancer.
children; advanced cancer; symptoms
BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA’s decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
BRCA1; BRCA2; breast cancer; decision aid; decision-making; genetic counseling; mastectomy; oophorectomy
The purpose of this descriptive study is to describe health related quality of life (HRQOL) concerns among cancer patients with continent and incontinent urinary diversions (UD).
Subjects and Settings
Study participants were accrued from members of the California United Ostomy Association and two cancer centers in Southern California.
The City of Hope HRQOL-Ostomy Questionnaire (COHHRQOL-O) is a modified HRQOL measurement tool based on the original work done over a number of years by Grant and colleagues.
The COHHRQOL-O was mailed to 2890 individuals. Of the 1600 returns there were 307 responses from patients with UD indicating they had a UD and a diagnosis that clearly indicated cancer.
The majority of respondents were diagnosed with bladder cancer and the average time since surgery was 9.5 years. While most patients reported being sexually active prior to UD less than 27% resumed sexual activity after surgery. Over 75% of patients also reported difficulty in adjusting to their UD with the majority reporting difficulty with urine leakage. Those who were incontinent reported a range of bothersome issues, such as skin problems around the UD, difficulties in managing UD care, fear of recurrence, financial worries, family distress, and uncertainty about the future.
The results of this study add to our understanding of how patients adjust to a UD and what problems and issues can occur, even years after the initial surgery. Mastering UD care is best done under guidance of a WOC nurse and access to WOC nurse is essential when problems occur.
Hematopoietic cell transplant patients are among the most vulnerable and acutely ill cancer populations (Bevans, Mitchell, & Marden, 2008). The responsibility of caring for the daily physical and psychosocial needs of these patients after transplant is placed mostly on family caregivers(Williams, 2007). The purpose of this descriptive correlational research study was to describe caregiving experiences of 56 caregivers of HCT patients 3–12 months following transplant.
Methods & Sample
Patients and caregivers were recruited from two west coast regional transplant programs in the United States. Variables studied were: relationship quality, rewards of caregiving, predictability, role strain, patient function, caregiving activities, and caregiver quality of life (QOL).
Results indicated that all areas of role strain are significantly negatively correlated with caregiver's QOL. Predictability was negatively associated with problem solving and emotional strain indicating that as the level of predictability of the situation decreases, caregiver strain and problem solving increase. Predictability was positively correlated to caregiver QOL indicating that as the situation is more predictable caregiver QOL increases. Emotional strain, problem-solving strain, and usual care strain were significantly positively related, indicating that emotional strain and problem solving strain increased together. As usual care strain increased, so did problem-solving strain and emotional strain.
Suggestions for interventions include assessing and responding to caregiver issues such as emotional strain, problem-solving strain, usual care strain, unpredictability, and QOL. Examples of caregiver-focused interventions include providing timely appropriate information about these caregiver concerns including elements that make the caregiving situation predictable, and incorporating best practices for preventing and minimizing
HCT Transplant; Caregivers; Predictability; Role Strain; Quality of Life
Societal preference-weighted health-related quality of life (HRQOL) scores enable comparing multi-dimensional health states across diseases and treatments for research and policy.
To assess the effects of living with a permanent intestinal stoma, compared to a major bowel resection, among colorectal cancer (CRC) survivors.
Cross-sectional multivariate linear regression analysis to explain preference-weighted HRQOL scores.
Six-hundred-forty CRC survivors (≥5 years) from three group-model HMOs; ostomates and non-ostomates with colorectal resections for CRC were matched on gender, age (±5 years), time since diagnosis, and tumor site (rectum vs. colon).
SF-6D scoring system applied to Medical Outcomes Study Short Form-36 version 2 (SF-36v2); City of Hope Quality of Life-Ostomy (mCOH-QOL-O); Charlson-Deyo comorbidity index.
Survey of CRC survivors linked to respondents’ clinical data extracted from HMO files.
Response rate was 52%. Ostomates and non-ostomates had similar sociodemographic characteristics. Mean SF-6D score was 0.69 for ostomates, compared to 0.73 for non-ostomates (p <.001), but other factors explained this difference. Complications of initial cancer surgery, and prior-year comorbidity burden and hospital use were negatively associated with SF-6D scores, while household income was positively associated.
CRC survivors’ SF-6D scores were not associated with living with a permanent ostomy after other factors were taken into account. Surgical complications, comorbidities, and metastatic disease lowered the preference-weighted HRQOL of CRC survivors with and without ostomies. Further research to understand and reduce late complications from CRC surgeries as well as associated depression is warranted.
colorectal cancer; survivorship; HRQOL; stomas; ostomies; utilities
Informal caregivers (IC) for medically fragile hematopoietic cell transplant (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient’s IC. Assessment of HCT caregiver quality of life and health status is critical to implementation of timely intervention and support.
A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of hematopoietic cell transplant patients. These studies were summarized within the caregiver concepts of quality of life, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research.
Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on Education, Psychosocial Support, and Self Care.
Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses needs of ICs of hematopoietic cell transplant patients. Testing of these interventions and additional areas of research are identified.
Implications for Practice
Beginning descriptive evidence provides the basis for interventions for ICs of hematopoietic cell transplant patients. These interventions support caregiver quality of life and role implementation depending on individual caregivers’ resources and needs. Further evaluation and clinical research is needed.
IC; hematopoietic cell transplant; hematologic cancers; quality of life
To describe how gender shapes the concerns and adaptations of long-term (> 5 years) colorectal cancer (CRC) survivors with ostomies.
Qualitative study using content analysis of focus group content.
Member of Kaiser Permanente, residing in either Oregon, Southwest Washington State, or Northern California.
Four female and four male focus groups selected from quantitative survey participants with health-related quality of life (HRQOL) scores in the highest or lowest quartile.
Eight focus groups, discussed challenges of living with an ostomy. Content was recorded, transcribed, and analyzed using directive and summative content analysis.
Main Research Variables
HRQOL domains of physical, psychological, social and spiritual well being.
All groups reported avoiding foods that cause gas or rapid transit, and discussed how limiting the amount of food eaten controlled the output. All groups discussed physical activities, getting support from friends and family, and the importance of being resilient. Both genders identified challenges with sexuality/intimacy. Coping and adjustment difficulties were discussed by women with men only discussing these issues to a small extent. Difficulties with sleep were primarily identified by Low HRQOL women. Problems with body image and depression were discussed only by Low HRQOL women.
Common issues included diet management, physical activity, social support and sexuality. Women with low HRQOL discussed problems with depression, body image, and sleep.
Implications for Nursing
Application of these gender-based differences can inform educational interventions for CRC survivors with ostomies.
Ostomy; Colorectal Cancer; Quality of Life; Gender; Focus Groups
Psychological issues following Hematopoietic Cell Transplantation (HCT) are unfortunately common. Literature specific to the transplant experience for the needs of adolescents and young adults (AYA) is lacking. The purpose of this article is to 1) describe the allogeneic transplant experience for AYA transplant patients during the first year following transplantation including demographic and treatment characteristics, 2) present AYA data obtained during and following a six-part post transplant discharge study, 3) illustrate typical AYA experiences using case studies and 4) propose AYA intervention strategies within Erickson’s Stages of Psychosocial Development. A Quality of Life (QOL) model provided both the research conceptual framework, and the content analysis framework for the qualitative research. Themes that emerged within each domain were the following: sexuality/fertility, fatigue, depression/poor coping/habits, adherence issues, use of technology, dependency issues, changes in roles/relationships, issues with school/education, financial issues, family problems/issues, miscellaneous, religion/spirituality, fear of future, uncertainty, life, death, more life appreciation. These data guide us for providing targeted interventions for the needs of this AYA population. This paper has presented literature and developmental theory, qualitative and qualitative data from an intervention study, and clinical cases in order to propose a developmental treatment model for AYA transplant patients. A coordinated and multidisciplinary approach is needed for the HCT patient who is an AYA.
Among long-term (≥5 years) colorectal cancer survivors with permanent ostomy or anastomosis, we compared the incidence of medical and surgical complications and examined the relationship of complications with health-related quality of life.
The incidence and effects of complications on long-term health-related quality of life among colorectal cancer survivors are not adequately understood.
Participants (284 ostomy/395 anastomosis) were long-term colorectal cancer survivors enrolled in an integrated health plan. Health-related quality of life was assessed via mailed survey questionnaire in 2002–2005. Information on colorectal cancer, surgery, co-morbidities, and complications was obtained from computerized data and analyzed using survival analysis and logistic regression.
Ostomy and anastomosis survivors were followed an average 12.1 and 11.2 years, respectively. Within 30 days of surgery, 19% of ostomy and 10% of anastomosis survivors experienced complications (p<0.01). From 31 days on, the percentages were 69% and 67% (after adjustment, p<0.001). Bleeding and post-operative infection were common early complications. Common long-term complications included hernia, urinary retention, hemorrhage, skin conditions, and intestinal obstruction. Ostomy was associated with long-term fistula (odds ratio 5.4; 95% CI 1.4–21.2), and among ostomy survivors, fistula was associated with reduced health-related quality of life (p<0.05).
Complication rates remain high despite recent advances in surgical treatment methods. Survivors with ostomy have more complications early in their survivorship period, but complications among anastomosis survivors catch up after 20 years, when the two groups have convergent complication rates. Among colorectal cancer survivors with ostomy, fistula has especially important implications for health-related quality of life.