M. Jane Mohler

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.

Barriers to Use of Electronic Adherence Monitoring in an HIV Clinic

OBJECTIVE: To evaluate barriers to Medication Event Monitoring System (MEMS) measurement of adherence to combination antiretroviral therapy in an HIV clinic. DESIGN: Descriptive, cross-sectional study measured MEMS adherence to one antiretroviral for one month. SETTING: HIV clinic in a Veterans Affairs Medical Center. PARTICIPANTS: Sixty-four men on a stable antiretroviral treatment regimen. MAIN OUTCOME MEASURES: Decanting (removing >1 dose at a time) before and during monitoring over a 30-day observation period was used to determine the qualitative impact of MEMS on adherence. The adherence index was the proportion of prescribed doses not missed. RESULTS: Subjects were primarily white (73%) with mean CD4+ count 408 cells/mm3, log viral load 1.81 copies/mL, and duration of antiretroviral therapy 5.5 years. Twenty-seven (42%) had some decanting routine established prior to monitoring; 12 (44%) of these patients used daily decanters and 15 (56%) used weekly pillboxes. Of those who decanted prior to the study, 10 (37%) did not stop decanting during monitoring, 14 (52%) stopped decanting only the capped medication, and three (11%) stopped decanting all antiretrovirals. Other adherence strategies did not accommodate MEMS. Eight (13%) subjects said MEMS made adherence more difficult, six (9%) said MEMS was a reminder to adhere, and two (3%) mentioned both. Two subjects attributed skipped doses or time changes to the MEMS cap. The majority who refused to participate used pillboxes. CONCLUSIONS: Personal adherence strategies incompatible with MEMS are common in persons on complex treatment regimens. Although MEMS data on decanters underestimate adherence, excluding decanters erodes applicability of descriptive measures. MEMS use may have affected adherence behavior. Measures in conjunction with MEMS should include self-reported adherence and decanting assessment.

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.

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.

The Frailty Syndrome: Clinical measurements and basic underpinnings in humans and animals

Frailty is an increasingly recognized syndrome resulting in age-related decline in function and reserve across multiple physiologic systems. It presents as a hyperinflammable state, characterized by high vulnerability for adverse health outcomes, such as disability, falls, hospitalization, institutionalization, and mortality. The prevalence of Frailty Syndrome (FS) is of potentially enormous significance, as it potentially affects 20-30% of adults older than 75. Cellular and molecular basis of frailty has not been elucidated. The objective of this review is to discuss recent advances in: (i) the potential cellular and molecular basis of Frailty Syndrome, including development of new models to study it; (ii) the human and animal measures of Frailty Syndrome; and (iii) the development of objective cross-species correlates to aid the basic understanding, diagnosis, treatment and rehabilitation of Frailty Syndrome in older adults.

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.

A Mixed-Methods Evaluation of Health-Related Quality of Life for Male Veterans with and without Intestinal Stomas

PurposeIntestinal stomas have a major impact on Cases’ lives. It is essential to better understand the areas in which interventions may help to minimize the negative consequences.MethodsThis was a case-control survey study using validated instruments (City of Hope Quality of Life-Ostomy and Short Form 36 for Veterans). Cases were accrued from Veterans Affairs Medical Centers in Tucson, Indianapolis, and Los Angeles. Eligibility included a major intra-abdominal surgical procedure that led to an ostomy (cases), or a similar procedure that did not mandate a stoma (controls). Analysis included quantitative and qualitative responses.ResultsThe response rate was 48 percent (511/1063). Cases and controls had relatively similar demographic characteristics. Because of low numbers of female respondents (13 cases and 11 controls), only results for males are reported. Based on both the City of Hope Quality of Life-Ostomy and Short Form 36 for Veterans, cases reported significantly poorer scores on scales/domains reflecting psychologic and social functioning and well being. Additionally, cases reported poorer scores on Short Form 36 for Veterans scales reflecting physical functioning and significantly lower scores on multiple items in the social domain of the City of Hope Quality of Life-Ostomy compared with controls. Two-thirds of cases replied to an open-ended question on their “greatest challenge” related to their ostomy, which led to further clarification of major issues.ConclusionsMultiple health-related quality of life problems were reported by male veterans with intestinal stomas. The greatest differences between cases and controls were observed in the social and psychologic domains/scales. Findings from this study provide a greater understanding of the challenges faced by ostomates and will inform the development and evaluation of urgently needed intervention strategies.

Racial and ethnic disparities in the control of cardiovascular disease risk factors in Southwest American veterans with type 2 diabetes: the Diabetes Outcomes in Veterans Study

BackgroundRacial/ethnic disparities in cardiovascular disease complications have been observed in diabetic patients. We examined the association between race/ethnicity and cardiovascular disease risk factor control in a large cohort of insulin-treated veterans with type 2 diabetes.MethodsWe conducted a cross-sectional observational study at 3 Veterans Affairs Medical Centers in the American Southwest. Using electronic pharmacy databases, we randomly selected 338 veterans with insulin-treated type 2 diabetes. We collected medical record and patient survey data on diabetes control and management, cardiovascular disease risk factors, comorbidity, demographics, socioeconomic factors, psychological status, and health behaviors. We used analysis of variance and multivariate linear regression to determine the effect of race/ethnicity on glycemic control, insulin treatment intensity, lipid levels, and blood pressure control.ResultsThe study cohort was comprised of 72 (21.3%) Hispanic subjects (H), 35 (10.4%) African Americans (AA), and 226 (67%) non-Hispanic whites (NHW). The mean (SD) hemoglobin A1c differed significantly by race/ethnicity: NHW 7.86 (1.4)%, H 8.16 (1.6)%, AA 8.84 (2.9)%, p = 0.05. The multivariate-adjusted A1c was significantly higher for AA (+0.93%, p = 0.002) compared to NHW. Insulin doses (unit/day) also differed significantly: NHW 70.6 (48.8), H 58.4 (32.6), and AA 53.1 (36.2), p < 0.01. Multivariate-adjusted insulin doses were significantly lower for AA (-17.8 units/day, p = 0.01) and H (-10.5 units/day, p = 0.04) compared to NHW. Decrements in insulin doses were even greater among minority patients with poorly controlled diabetes (A1c ≥ 8%). The disparities in glycemic control and insulin treatment intensity could not be explained by differences in age, body mass index, oral hypoglycemic medications, socioeconomic barriers, attitudes about diabetes care, diabetes knowledge, depression, cognitive dysfunction, or social support. We found no significant racial/ethnic differences in lipid or blood pressure control.ConclusionIn our cohort, insulin-treated minority veterans, particularly AA, had poorer glycemic control and received lower doses of insulin than NHW. However, we found no differences for control of other cardiovascular disease risk factors. The diabetes treatment disparity could be due to provider behaviors and/or patient behaviors or preferences. Further research with larger sample sizes and more geographically diverse populations are needed to confirm our findings.

Inflammatory bowel disease and the elderly: a review.

Inflammatory bowel disease among the elderly is common, with growing incident and prevalence rates. Compared with younger IBD patients, genetics contribute less to the pathogenesis of older-onset IBD, with dysbiosis and dysregulation of the immune system playing a more significant role. Diagnosis may be difficult in older individuals, as multiple other common diseases can mimic IBD in this population. The clinical manifestations in older-onset IBD are distinct, and patients tend to have less of a disease trajectory. Despite multiple effective medical and surgical treatment strategies for adults with Crohns disease and ulcerative colitis, efficacy studies typically have excluded older subjects. A rapidly ageing population and increasing rates of Crohns and ulcerative colitis make the paucity of data in older adults with IBD an increasingly important clinical issue.

COMPLICATIONS AMONG COLORECTAL CANCER SURVIVORS: SF-6D PREFERENCE-WEIGHTED QUALITY OF LIFE SCORES

Background:Societal preference-weighted health-related quality of life (HRQOL) scores enable comparing multidimensional health states across diseases and treatments for research and policy. Objective:To assess the effects of living with a permanent intestinal stoma, compared with a major bowel resection, among colorectal cancer (CRC) survivors. Research Design:Cross-sectional multivariate linear regression analysis to explain preference-weighted HRQOL scores. Subjects:In all, 640 CRC survivors (≥5 years) from 3 group model health maintenance organizations; ostomates and nonostomates with colorectal resections for CRC were matched on gender, age (±5 years), time since diagnosis, and tumor site (rectum vs. colon). Measures:SF-6D scoring system was applied to Medical Outcomes Study Short Form-36 version 2 (SF-36v2); City of Hope Quality of Life-Ostomy; and Charlson-Deyo comorbidity index. Methods:Survey of CRC survivors linked to respondents’ clinical data extracted from health maintenance organization files. Results:Response rate was 52%. Ostomates and nonostomates had similar sociodemographic characteristics. Mean SF-6D score was 0.69 for ostomates, compared with 0.73 for nonostomates (P < 0.001), but other factors explained this difference. Complications of initial cancer surgery, and previous year comorbidity burden, and hospital use were negatively associated with SF-6D scores, whereas household income was positively associated. Conclusions: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.