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1.  SPIRITUAL WELL-BEING IN LONG-TERM COLORECTAL CANCER SURVIVORS WITH OSTOMIES 
Psycho-oncology  2013;22(11):2513-2521.
Objective
Spiritual well-being (SpWB) is integral to health-related quality of life (HRQOL). The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We analyzed the SpWB of CRC survivors with ostomies.
Methods
Two-hundred-eight-three long-term (≥5 years) CRC survivors with permanent ostomies completed the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O) questionnaire. An open-ended question elicited respondents’ greatest challenge in living with an ostomy. We used content analysis to identify SpWB responses and develop themes. We analyzed responses on the 3-item SpWB sub-scale.
Results
Open-ended responses from 52% of participants contained SpWB content. Fifteen unique SpWB themes were identified. Sixty percent of individuals expressed positive themes such as “positive attitude”, “I am fortunate”, “appreciate life more”, and “strength through religious faith”. Negative themes, expressed by only 29% of respondents, included “struggling to cope”, “not feeling ‘normal’”, and “loss”. Fifty-five percent of respondents expressed ambivalent themes including “learning acceptance”, “an ostomy is the price for survival”, “reason to be around despite suffering”, and “continuing to cope despite challenges”. The majority (64%) had a high SpWB sub-scale score.
Conclusions
While CRC survivors with ostomies infrequently mentioned negative SpWB themes as a major challenge, ambivalent themes were common. SpWB themes often were mentioned as a source of resilience or part of the struggle to adapt to an altered body after cancer surgery. Interventions to improve the quality of life of cancer survivors should contain program elements designed to address SpWB that support personal meaning, inner peace, inter-connectedness, and belonging.
doi:10.1002/pon.3318
PMCID: PMC4105015  PMID: 23749460
cancer; oncology; spiritual well-being; ostomy; stoma; survivorship; HRQOL
2.  The validity of a behavioural multiple-mini-interview within an assessment centre for selection into specialty training 
BMC Medical Education  2014;14:169.
Background
Entry into specialty training was determined by a National Assessment Centre (NAC) approach using a combination of a behavioural Multiple-Mini-Interview (MMI) and a written Situational Judgement Test (SJT). We wanted to know if interviewers could make reliable and valid decisions about the non-cognitive characteristics of candidates with the purpose of selecting them into general practice specialty training using the MMI. Second, we explored the concurrent validity of the MMI with the SJT.
Methods
A variance components analysis estimated the reliability and sources of measurement error. Further modelling estimated the optimal configurations for future MMI iterations. We calculated the relationship of the MMI with the SJT.
Results
Data were available from 1382 candidates, 254 interviewers, six MMI questions, five alternate forms of a 50-item SJT, and 11 assessment centres. For a single MMI question and one assessor, 28% of the variance between scores was due to candidate-to-candidate variation. Interviewer subjectivity, in particular the varying views that interviewer had for particular candidates accounted for 40% of the variance in scores. The generalisability co-efficient for a six question MMI was 0.7; to achieve 0.8 would require ten questions. A disattenuated correlation with the SJT (r = 0.35), and in particular a raw score correlation with the subdomain related to clinical knowledge (r = 0.25) demonstrated evidence for construct and concurrent validity. Less than two per cent of candidates would have failed the MMI.
Conclusion
The MMI is a moderately reliable method of assessment in the context of a National Assessment Centre approach. The largest source of error relates to aspects of interviewer subjectivity, suggesting enhanced interviewer training would be beneficial. MMIs need to be sufficiently long for precise comparison for ranking purposes. In order to justify long term sustainable use of the MMI in a postgraduate assessment centre approach, more theoretical work is required to understand how written and performance based test of non-cognitive attributes can be combined, in a way that achieves acceptable generalizability, and has validity.
doi:10.1186/1472-6920-14-169
PMCID: PMC4136634  PMID: 25123968
Selection; Validity; Postgraduate training; Assessment; Multiple-mini-interview; Situational judgment test; Assessment centre; General practice
3.  Untreated Peristomal Skin Complications among Long-Term Colorectal Cancer Survivors with Ostomies: Lessons from a Study of Family Caregiving 
This ethnography of family caregiving explored why peristomal skin complications are both common and undertreated among colorectal cancer (CRC) survivors with intestinal ostomies. We sought to identify factors that hinder or facilitate prompt detection and treatment of ostomy and skin problems. We collected data through in-depth interviews with 31 cancer survivors and their family caregivers, fieldwork, structured assessments, and medical records review. We analyzed data using qualitative theme and matrix analyses. We found that survivors who received help changing the skin barrier around their stoma had fewer obstacles to detection and treatment of peristomal skin complications. Half of the survivors received unpaid help with ostomy care. All such help came from spouses. Married couples who collaborated in ostomy care reported that having assistance in placing the ostomy appliance helped with preventing leaks, detecting skin changes, and modifying ostomy care routines. Survivors who struggled to manage ostomy care independently reported more obstacles to alleviating and seeking treatment for skin problems. Nurses who encounter CRC survivors with ostomies can improve treatment of peristomal skin problems by asking patients and caregivers about ostomy care and skin problems, examining the peristomal area, and facilitating routine checkups with a wound, ostomy and continence nurse.
doi:10.1188/11.CJON.644-650
PMCID: PMC4123754  PMID: 22119975
surgical stomas; family caregivers; ethnography; colorectal neoplasms; long-term survivors
5.  Health literacy, numeracy, and interpretation of graphical breast cancer risk estimates 
Objective
Health literacy and numeracy are necessary to understand health information and to make informed medical decisions. This study explored the relationships among health literacy, numeracy, and ability to accurately interpret graphical representations of breast cancer risk.
Methods
Participants (N = 120) were recruited from the Facing Our Risk of Cancer Empowered (FORCE) membership. Health literacy and numeracy were assessed. Participants interpreted graphs depicting breast cancer risk, made hypothetical treatment decisions, and rated preference of graphs.
Results
Most participants were Caucasian (98%) and had completed at least one year of college (93%). Fifty-two percent had breast cancer, 86% had a family history of breast cancer, and 57% had a deleterious BRCA gene mutation. Mean health literacy score was 65/66; mean numeracy score was 4/6; and mean graphicacy score was 9/12. Education and numeracy were significantly associated with accurate graph interpretation (r = 0.42, p < 0.001 and r = 0.65, p < 0.001, respectively). However, after adjusting for numeracy in multivariate linear regression, education added little to the prediction of graphicacy (r2 = 0.41 versus 0.42, respectively).
Conclusion
In our highly health-literate population, numeracy was predictive of graphicacy.
Practice implications
Effective risk communication strategies should consider the impact of numeracy on graphicacy and patient understanding.
doi:10.1016/j.pec.2010.04.027
PMCID: PMC4041683  PMID: 20554149
Health literacy; Numeracy; Graphicacy; Breast cancer; Risk communication
6.  IRRIGATION PRACTICES IN LONG-TERM SURVIVORS OF COLORECTAL CANCER (CRC) WITH COLOSTOMIES 
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.
doi:10.1188/12.CJON.514-519
PMCID: PMC3951489  PMID: 23022935
Colostomy; colorectal cancer; irrigation; bowel control
7.  Development of a Chronic Care Ostomy Self Management Program 
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.
doi:10.1007/s13187-012-0433-1
PMCID: PMC3578127  PMID: 23104143
9.  Surviving Colorectal Cancer: Long-Term, Persistent Ostomy-Specific Concerns and Adaptations 
Purpose
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1097/WON.0b013e3182750143
PMCID: PMC3536890  PMID: 23222968
10.  Changes in Body Mass Index and Stoma Related Problems in the Elderly 
Journal of geriatric oncology  2012;4(1):84-89.
Objectives
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.
Results
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]).
Conclusion
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.
doi:10.1016/j.jgo.2012.10.172
PMCID: PMC3564631  PMID: 24071496
Colorectal cancer; ostomy; stoma; BMI; body mass index
11.  A Unique Interactive Cognitive Behavioral Training Program for Front Line Cancer Care Professionals 
doi:10.1007/s13187-012-0425-1
PMCID: PMC3518648  PMID: 23090589
Health professional education; Cognitive Behavioral Therapy; Cancer survivorship
12.  Management of Anorexia-Cachexia in Late Stage Lung Cancer Patients 
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.
doi:10.1097/NJH.0b013e31825f3470
PMCID: PMC3834956  PMID: 24273460
Anorexia; Cachexia; Cachexia- Anorexia Syndrome
13.  Functional status and health-related quality of life among allogeneic transplant patients at hospital discharge: a comparison of sociodemographic, disease, and treatment characteristics 
Purpose
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1007/s00520-012-1389-8
PMCID: PMC3393810  PMID: 22318502
Allogeneic transplant; Discharge status; Quality of life
14.  Nursing Role Implications for Family Caregiving 
Seminars in oncology nursing  2012;28(4):279-282.
Objective
To describe the clinical, education and research roles of professional nurses caring for family caregivers.
Data Scores
Review of literature and websites on the professional nursing role and family caregivers.
Conclusion
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.
doi:10.1016/j.soncn.2012.09.011
PMCID: PMC3651689  PMID: 23107186
Professional nursing; nursing role; family caregiving
15.  Patient-Initiated Discharge Needs of Allogeneic Transplant Patients 
Clinical journal of oncology nursing  2012;16(4):E142-E149.
doi:10.1188/12.CJON.E142-E149
PMCID: PMC3784345  PMID: 22842699
17.  Sexuality, Lung Cancer, and the Older Adult: An Unlikely Trio? 
Case Study 
Mrs. L. is a 60-year-old retired female teacher with stage IIIA squamous cell carcinoma of the lung, status postchemoradiation. She recently developed radiation pneumonitis, which was managed conservatively, and she did not require steroids. Mrs. L. has noted some progression of her underlying dyspnea. She is monitoring her oxygen saturation at home, and most of the time it is in the range of 94% to 96%. On one occasion only, her oxygen dropped to 88% and rapidly improved to the mid-90s. Her cough has improved for the past 4 to 6 weeks. She denies sputum production, congestion, or fever. Mrs. L. does not require a walker and uses a wheelchair only for long distances. She has occasional, slight dysphagia. A recent CT scan shows stable disease, and she is to return to the clinic in 2 months for restaging and possible further chemotherapy.
Mrs. L. and her husband have been married for 33 years, and they have been very close. Until recently, they have continued to be sexually active and very intimate with each other. Since Mrs. L.’s diagnosis, and during treatment, the couple have become extremely stressed and psychologically spent. The act of sexual intercourse has ceased, yet they have attempted to remain close and maintain open communication. In addition to Mrs. L.’s increasing dyspnea, she has also suffered a great deal of fatigue and depression, along with alopecia and vaginal atrophy, due to the chemotherapy and radiation treatments.
Both Mr. and Mrs. L. are very distressed over the change in their sexual lives. Mr. L. has mentioned that he now feels more like a "nursemaid" than a husband or lover. Mrs. L. has made concerted efforts to maintain intimacy with her husband, but her fatigue is profound. She has taken to sleeping in the living room, sitting up on the couch, as it relieves her dyspnea to some degree.
PMCID: PMC4093438  PMID: 25032012
18.  Educating Health Care Professionals to Provide Institutional Changes in Cancer Survivorship Care 
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.
doi:10.1007/s13187-012-0314-7
PMCID: PMC3724461  PMID: 22271583
Cancer survivorship education; Institutional change; Quality of life; Institutional survey; Institutional assessment
19.  Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small-Cell Lung Cancer 
Oncology nursing forum  2013;40(4):337-346.
Purpose/Objectives
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.
Design
Descriptive, longitudinal.
Setting
One NCI-designated comprehensive cancer center in Southern California.
Sample
A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued.
Methods
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.
Findings
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.
Conclusions
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.
doi:10.1188/13.ONF.337-346
PMCID: PMC3695406  PMID: 23803267
21.  Challenges and Strategies for Recruitment and Retention of Vulnerable Research Participants: Promoting the Benefits of Participation 
Applied Nursing Research  2010;25(2):101-107.
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.
doi:10.1016/j.apnr.2010.02.003
PMCID: PMC3029498  PMID: 20974092
22.  Reflex Immunohistochemistry and Microsatellite Instability Testing of Colorectal Tumors for Lynch Syndrome Among US Cancer Programs and Follow-Up of Abnormal Results 
Journal of Clinical Oncology  2012;30(10):1058-1063.
Purpose
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).
Results
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.
Conclusion
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.
doi:10.1200/JCO.2011.38.4719
PMCID: PMC3341150  PMID: 22355048
23.  SYMPTOMS IN CHILDREN WITH ADVANCED CANCER: CHILD AND NURSE REPORTS 
Cancer Nursing  2012;35(2):115-125.
Background
Systematic studies on the specific symptom experience in children with advanced cancer are limited.
Objective
To examine common symptoms and to explore commonly occurring symptoms over time.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1097/NCC.0b013e31821aedba
PMCID: PMC3199366  PMID: 21760496
children; advanced cancer; symptoms
24.  Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer 
Journal of genetic counseling  2011;20(3):294-307.
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.
doi:10.1007/s10897-011-9350-4
PMCID: PMC3531556  PMID: 21369831
BRCA1; BRCA2; breast cancer; decision aid; decision-making; genetic counseling; mastectomy; oophorectomy
25.  GOING WITH THE FLOW: QUALITY OF LIFE OUTCOMES OF CANCER SURVIVORS WITH URINARY DIVERSION 
Purpose
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.
Instruments
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1097/WON.0b013e3181c68e8f
PMCID: PMC3530426  PMID: 20075694

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