A QOL instrument was developed to measure the specific concerns of long term cancer survivors. The QOL-CS is based on previous versions of the QOL instrument developed by researchers at the City of Hope National Medical Centre (Grant, Padilla, and Ferrell). This instrument was revised over a one year pilot by Hassey-Dow and Ferrell. The revised instrument included 41 items representing the four domains of quality of life incorporating physical, psychological, social, and spiritual well being. The present study was conducted as a mail survey to the membership (n = 1,200) of the National Coalition for Cancer Survivorship with 686 subjects responding to the survey. This survey included a Demographic tool, QOL-CS and the FACT-G tool developed by Cella. Psychometric analysis, performed on 686 respondents, included measures of reliability and validity. Two measures of reliability included test-retest and internal consistency. The overall QOL-CS tool test-retest reliability was 0.89 with subscales of Physical r = 0.88, Psychological r = 0.88, Social r = 0.81, and Spiritual, r = 0.90. The second measure of reliability was computation of internal consistency using Cronbach's alpha coefficient as a measure of agreement between items and subscales. Analysis revealed an overall r = 0.93. Subscale alphas average ranged from r = 0.71 for spiritual well being, r = 0.77 for physical, r = 0.81 for social, and r = 0.89 for psychological. Several measures of validity were used to determine the extent to which the instrument measured the concept of QOL in cancer survivors. The first method of content validity was based on a panel of QOL researchers and nurses with expertise in oncology. The second measure used stepwise multiple regression to determine factors most predictive of overall QOL in cancer survivors. Seventeen variables were found to be statistically significant accounting for 91% of the variance in overall QOL. The fourth measure of validity used Pearson's correlations to estimate the relationships between the subscales of QOL-CS and the subscales of the established FACT-G tool. There was moderate to strong correlation between associated subscales including QOL-CS physical to FACT physical (r = 0.74), QOL-CS Psych to FACT Emotional (r = 0.65), QOL Social to FACT Social (r = 0.44). The overall QOL-CS correlation with the FACT-G was 0.78. Additional measures of validity included correlations of individual items of the QOL-CS tool, factor analysis, and construct validity discriminating known groups of cancer survivors. Findings demonstrated that the QOL-CS and its subscales adequately measured QOL in this growing population of cancer survivors.

Objective To describe how gender shapes the concerns and adaptations of long-term (> 5 years) colorectal cancer (CRC) survivors with ostomies. Design Qualitative study using content analysis of focus group content. Setting Member of Kaiser Permanente, residing in either Oregon, Southwest Washington State, or Northern California. Sample 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. Methods 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. 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/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. Conclusions 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.

We assessed late mortality in 854 individuals who had survived 2 or more years after autologous hematopoietic cell transplantation (HCT) for hematologic malignancies. Median age at HCT was 36.5 years, and median length of follow-up was 7.6 years. Overall survival was 68.8% ؎ 1.8% at 10 years, and the cohort was at a 13-fold increased risk for late death (standardized mortality ratio

A B S T R A C T PurposeIntestinal stomas can pose significant challenges for long-term (Ն 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 MethodsThis 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-QOLOstomy) 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 (Ͻ 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. ConclusionMen 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.

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.

Results confirmed the negative impact of a colostomy on QOL. While patients with cancer had a better overall QOL than those with benign processes, concerns were common to all colostomy patients. These results provide health care practitioners with information useful in discussing QOL concerns during pre-operation treatment decisions and post operative teaching and follow-up care.

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.

This prospective longitudinal study examined the quality of life (QOL) after hematopoietic cell transplantation (HCT) and identified risk factors of poor QOL in 312 adult autologous and allogeneic HCT patients. Physical, psychological, social, and spiritual well-being was assessed before HCT, 6 months, and 1, 2, and 3 years after HCT. For all HCT patients, physical QOL was stable from before to after HCT (P > .05); psychologic (P < .001), social (P < .001), and spiritual (P ‫؍‬ .03) QOL improved at 6 months. Study noncompleters (because of illness or death) had worse QOL. Allogeneic patients reported worse physical and psychologic wellbeing (P < .05). Older patients reported worse physical but better social wellbeing regardless of HCT type (P < .05). Two or more domains were affected by race/ethnicity, household income, and education in autologous patients, and by body mass index (BMI), decline in BMI, primary diagnosis, and chronic graftversus-host disease (GVHD) in allogeneic patients (P < .05). At 3 years, 74% of HCT patients were employed full or part time. Older autologous patients with lower pre-HCT income were less likely to work (P < .05); allogeneic patients with chronic GVHD were less likely to work (P ‫؍‬ .002). Multidisciplinary efforts to identify and support vulnerable subgroups after HCT need to be developed. (Blood. 2010;115: 2508-2519)