Robert S. Krouse

Health-Related Quality of Life Among Long-Term Rectal Cancer Survivors With an Ostomy: Manifestations by Sex

PURPOSE Intestinal stomas can pose significant challenges for long-term (> or = 5 years) rectal cancer (RC) survivors. Specifying common challenges and sociodemographic or clinical differences will further the development of tailored interventions to improve health-related quality of life (HRQOL). PATIENTS AND METHODS This was a matched cross-sectional study of long-term RC survivors conducted in three Kaiser Permanente regions. The mailed questionnaire included the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-Ostomy) and Medical Outcomes Study 36-Item Short-Form Health Survey, version 2 (SF-36v2). Groups surveyed were permanent ostomates (cases) and those who did not require an ostomy (controls). RC survivors were matched on sex, age, and time since diagnosis. Comparisons between groups used regression analysis with adjustment for age, comorbidity score, history of radiation therapy, income, and work status. RESULTS Response rate was 54% (491 of 909). Cases and controls had similar demographic characteristics. On the basis of the mCOH-QOL-Ostomy, both male and female cases had significantly worse social well-being compared with controls, while only female cases reported significantly worse overall HRQOL and psychological well-being. For younger females (< age 75 years), ostomy had a greater impact on physical well-being compared with older females. Based on the SF-36v2, statistically significant and meaningful differences between female cases and controls were observed for seven of the eight scales and on the physical and mental component summary scores. CONCLUSION Men and women report a different profile of challenges, suggesting the need for targeted or sex-specific interventions to improve HRQOL in this population. This may include focus on physical HRQOL for female ostomy survivors younger than age 75.

Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy.

PURPOSE The purpose of this study is to describe demographic, clinical, and quality-of-life variables related to ostomy complications (skin irritation, leakage, and difficulty adjusting to an ostomy) in a veteran population in the United States. DESIGN The original study employed a descriptive crosssectional study using a mixed method design. This secondary analysis used the quantitative data collected. SAMPLE AND SETTING Two hundred thirty-nine veterans with intestinal ostomies from 3 Veterans Administration hospitals participated in the study. METHODS Instruments used for this investigation included the City of Hope Quality of Life: Ostomy Instrument. Demographic and medical history data were collected from the survey, the Veterans Administration health information system, and the Tumor Registry database. A self-administered survey questionnaire (mCOH-QOL-Ostomy) was mailed to each participant. RESULTS The severity of skin irritation, problems with leakage, and difficulty adjusting were significantly related to demographic, clinical, and quality-of-life domains. Univariate analyses showed that age, income, employment, preoperative care (stoma site marking and education), having a partner, ostomy type, reason for ostomy, time since surgery, total quality-of-life scores and scores on all 4 domains of quality of life were related to the severity of these ostomy complications. Age was inversely related to severity of all 3 ostomy complications (skin irritation, leakage, and difficulty adjusting). Having an ileostomy, rather than a colostomy, was associated with higher severity of skin irritation. Having had the stoma site marked preoperatively was associated with less difficulty adjusting to an ostomy, and having had preoperative ostomy education was associated with less severe problems with skin irritation and leakage. Severity of each ostomy complication predicted total quality-of-life scores. Difficulty adjusting to the ostomy was related to all 4 quality-of-life domains (physical, psychological, social, and spiritual). CONCLUSIONS This study found important relationships between demographic and clinical factors and ostomy complications. Skin problems, leakage, and difficulty adjusting predicted total quality of life scores and domains. Establishing relationships among ostomy complications and demographic, clinical factors, and quality of life can enhance identification of patients at risk for the development of complications and is an important first step in identifying the development of effective interventions to reduce the negative impact of complications for people with ostomies. Further study of predictors and outcomes of ostomy complications is needed to improve care.

Clinicopathologic Predictors of Sentinel Lymph Node Metastasis in Thin Melanoma

PURPOSE Indications for sentinel lymph node biopsy (SLNB) for thin melanoma are continually evolving. We present a large multi-institutional study to determine factors predictive of sentinel lymph node (SLN) metastasis in thin melanoma. PATIENTS AND METHODS Retrospective review of the Sentinel Lymph Node Working Group database from 1994 to 2012 identified 1,250 patients who had an SLNB and thin melanomas (≤ 1 mm). Clinicopathologic characteristics were correlated with SLN status and outcome. RESULTS SLN metastases were detected in 65 (5.2%) of 1,250 patients. On univariable analysis, rates of Breslow thickness ≥ 0.75 mm, Clark level ≥ IV, ulceration, and absence of regression differed significantly between positive and negative SLN groups (all P < .05). These four variables and mitotic rate were used in multivariable analysis, which demonstrated that Breslow thickness ≥ 0.75 mm (P = .03), Clark level ≥ IV (P = .05), and ulceration (P = .01) significantly predicted SLN metastasis with 6.3%, 7.0%, and 11.6% of the patients with these respective characteristics having SLN disease. Melanomas < 0.75 mm had positive SLN rates of < 5% regardless of Clark level and ulceration status. Median follow-up was 2.6 years. Melanoma-specific survival was significantly worse for patients with positive versus negative SLNs (P = .001). CONCLUSION Breslow thickness ≥ 0.75 mm, Clark level ≥ IV, and ulceration significantly predict SLN disease in thin melanoma. Most SLN metastases (86.2%) occur in melanomas ≥ 0.75 mm, with 6.3% of these patients having SLN disease, whereas in melanomas < 0.75 mm, SLN metastasis rates are < 5%. By using a 5% metastasis risk threshold, SLNB is indicated for melanomas ≥ 0.75 mm, but further study is needed to define indications for SLNB in melanomas < 0.75 mm.

Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire

Purpose: Ostomies may be performed for bowel or urinary diversion, and occur in both cancer and non-cancer patients. Impact on physical, psychological, social and spiritual well-being is not unexpected, but has been minimally described in the literature. The City of Hope Quality of Life (COH-QOL)-Ostomy Questionnaire is an adult patient self-report instrument designed to assess quality of life. This report focuses on the revision and psychometric testing of this questionnaire. Patients and methods: The revised COH-QOL-Ostomy Questionnaire involved in-depth patient interviews and expert panel review. The format consisted of a 13-item disease and demographic section, a 34-item forced-choice section, and a 41-item linear analogue scaled section. A mailed survey to California members of the United Ostomy Association resulted in a 62% response rate (n = 1513). Factor analysis was conducted to refine the instrument. Construct validity involved testing a number of hypotheses identifying contrasting groups. Results: Factor analysis confirmed the conceptual framework. Reliability of subscales ranged from 0.77 to 0.90. The questionnaire discriminated between subpopulations with specific concerns. Conclusions: Overall, the analyses provide evidence for the validity and reliability of the COH-QOL-Ostomy Questionnaire as a comprehensive, multidimensional self-report questionnaire for measuring quality of life in patients with intestinal ostomies.

Indications and use of palliative surgery-results of society of surgical oncology survey

Background: Despite increasing attention to end-of-life care in oncology, palliative surgery (PS) remains poorly defined. A survey to test the definition, assess the extent of use, and evaluate attitudes and goals of surgeons regarding PS was devised.Methods: A survey of Society of Surgical Oncology (SSO) members.Results: 419 SSO members completed a 110-item survey. Surgeons estimated 21% of their cancer surgeries as palliative in nature. Forty-three percent of respondents felt PS was best defined based on pre-operative intent, 27% based on post-operative factors, and 30% on patient prognosis. Only 43% considered estimated patient survival time an important factor in defining PS, and 22% considered 5-year survival rate important. The vast majority (95%) considered tumor still evident following surgery in a patient with poor prognosis constituted PS. Most surgeons felt PS could be procedures due to generalized illness related to cancer (80%) or related to cancer treatment complications (76%). Patient symptom relief and pain relief were identified as the two most important goals in PS, with increased survival the least important.Conclusion: PS is a major portion of surgical oncology practice. Quality-of-life parameters, not patient survival, were identified as the most important goals of PS.

Gender Differences in Quality of Life Among Long-Term Colorectal Cancer Survivors With Ostomies

PURPOSE/OBJECTIVES To describe how gender shapes the concerns and adaptations of long-term (i.e., more than five years) colorectal cancer survivors with ostomies. DESIGN Qualitative study using content analysis of focus group content. SETTING Oregon, southwestern Washington, and northern California. SAMPLE Four female and four male focus groups (N = 33) selected from 282 quantitative survey participants with health-related quality-of-life (HRQOL) scores in the highest or lowest quartile. METHODS Eight focus groups discussed the 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. FINDINGS 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 and intimacy. Coping and adjustment difficulties mostly were discussed by women, with men only discussing these issues to a small extent. Difficulties with sleep primarily were identified by women with low HRQOL. Problems with body image and depression were discussed only by women with low HRQOL. CONCLUSIONS Common issues included diet management, physical activity, social support, and sexuality. Although both genders identified challenges, women described more specific psychological and social issues than men. IMPLICATIONS FOR NURSING Application of these gender-based differences can inform educational interventions for colorectal cancer survivors with ostomies.

Functional protein pathway activation mapping of the progression of normal skin to squamous cell carcinoma.

Reverse phase protein microarray analysis was used to identify cell signaling derangements in squamous cell carcinoma (SCC) compared with actinic keratosis (AK) and upper inner arm (UIA). We analyzed two independent tissue sets with isolation and enrichment of epithelial cells by laser capture microdissection. Set 1 served as a pilot and a means to identify protein pathway activation alterations that could be further validated in a second independent set. Set 1 was comprised of 4 AK, 13 SCC, and 20 UIA. Set 2 included 15 AK, 9 SCCs, and 20 UIAs. Activation of 51 signaling proteins, known to be involved in tumorigenesis, were assessed for set 1 and showed that the MEK–ERK [mitogen-activated protein (MAP)/extracellular signal-regulated (ERK; MEK)] pathway was activated in SCC compared with AK and UIA, and that epidermal growth factor receptor (EGFR) and mTOR pathways were aberrantly activated in SCC. Unsupervised two-way hierarchical clustering revealed that AK and UIA shared a common signaling network activation architecture while SCC was dramatically different. Statistical analysis found that prosurvival signaling through phosphorylation of ASK and 4EBP1 as well as increased Bax and Bak expression was higher in AK compared with UIA. We expanded pathway network activation mapping in set 2 to 101 key signaling proteins, which corroborated activation of MEK–ERK, EGFR, and mTOR pathways through discovery of a number of upstream and downstream signaling molecules within these pathways to conclude that SCC is indeed a pathway activation–driven disease. Pathway activation mapping of SCC compared with AK revealed several interconnected networks that could be targeted with drug therapy for potential chemoprevention and therapeutic applications. Cancer Prev Res; 5(3); 403–13. ©2012 AACR.

The Health-Related Quality of Life in Long-Term Colorectal Cancer Survivors Study: objectives, methods and patient sample

ABSTRACT Objectives: The objective of this paper is to describe the complex mixed-methods design of a study conducted to assess health-related quality of life (HRQOL) outcomes and ostomy-related obstacles and adjustments among long-term (>5 years) colorectal cancer (CRC) survivors with ostomies (cases) and without ostomies (controls). In addition, details are provided regarding the study sample and the psychometric properties of the quantitative data collection measures used. Subsequent manuscripts will present the study findings. Research design and methods: The study design involved a cross-sectional mail survey for collecting quantitative data and focus groups for collecting qualitative data. The study subjects were individuals identified as long-term CRC survivors within a community-based health maintenance organizations enrolled population. Focus groups comprised of cases were conducted. The groups were divided by gender and HRQOL high and low quartile contrasts (based on the mail survey data). Main outcome measures: The modified City of Hope Quality of Life (mCOH-QOL)-Ostomy and SF-36v2 questionnaires were used in the mail survey. An abridged version of the mCOH-QOL-Ostomy was used for the control subjects. Focus groups explored ostomy-related barriers to self-care, adaptation methods/skills, and advice for others with an ostomy. Results: The survey response rate was 52% (679/1308) and 34 subjects participated in focus groups. The internal consistency reliability estimates for the mCOH-QOL-Ostomy and SF-36v2 questionnaires were very acceptable for group comparisons. In addition, evidence supports the construct validity of the abridged version of the mCOH-QOL-Ostomy. Study limitations include potential non-response bias and limited minority participation. Conclusions: We were able to successfully recruit long-term CRC survivors into this study and the psychometric properties of the quantitative measures used were quite acceptable. Mixed-methods designs, such as the one used in this study, may be useful in identification and further elucidation of common problems, coping strategies, and HRQOL outcomes among long-term cancer survivors.

Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations.

PURPOSE The purpose of this article was 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 8 gender- and health-related quality of life stratified focus groups and 130 colorectal cancer survivors who provided written comments to 2 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 focu s 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 readjust 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.

Sexual health and quality of life among male veterans with intestinal ostomies.

Purpose: This secondary analysis was conducted to expand our understanding of the challenges men with ostomies face regarding intimate relationships and sexual functioning. We examined quantitative and qualitative data to examine sexual functioning, intimate relationships, and health-related quality of life (HR-QOL) among military veterans who are living with an intestinal stoma. Setting: Three Veterans Health Administration sites. Sample: Four hundred eighty-one male veterans. Methods: Case-control, mixed-methods design; cases were those who had ostomies for at least 2 months, and controls had a similar major intestinal surgical procedure that did not result in an ostomy. Quantitative and qualitative data on sexual functioning, relationships, and other dimensions of HR-QOL were collected using the modified City of Hope Quality of Life-Ostomy questionnaire. Results: The overall response rate was 49%. Prevalence of erectile dysfunction was significantly higher among ostomates compared with controls (P < .001). Although a greater proportion of veterans with ostomies reported being sexually active before surgery compared with controls (P < .001), the proportion of men who had resumed sexual activity after surgery is significantly lower among the ostomy group (P = .015). Compared with veterans with ostomies who did not resume sexual activity after surgery, those who were sexually active reported a higher total HR-QOL score and higher scores on all 4 modified City of Hope Quality of Life-Ostomy dimensions (psychological, social, physical, and spiritual well-being). Veterans with ostomies who had resumed sexual activity after their ostomy also reported that their ostomy had caused significantly less interference with social activities, less isolation, less interference with their personal relationships, and less interference with their ability to be intimate. These men also reported less difficulty adjusting to the ostomy. Results of qualitative analyses showed that problems with intimacy and sexual function are among the greatest challenges faced by ostomates. Conclusion: Presence of an ostomy was associated with lower rates of sexual activity and higher erectile dysfunction. The lower rates of sexual activity and sexual satisfaction were related to the social and psychological dimensions of HR-QOL among men with ostomies. Interventions to address sexual concerns of male ostomates and their partners may prevent decrements to HR-QOL for these patients. Implications for Practice: Results of the study have implications for the clinical nurse specialist role in supporting and educating patients with ostomies to minimize the negative impact of an intestinal ostomy on sexual health and HR-QOL. Implications also relate to the need to educate current and future nurses about the importance of assessing sexual health.