Family caregivers and guilt in the context of cancer care.

BACKGROUND: Guilt as a key emotional phenomenon in the cancer-caregiving experience is an understudied issue. OBJECTIVE: The purpose of this study is to identify demographic characteristics of cancer caregivers and care-related stress factors that are associated with their feelings of caregiver guilt, as well as to explore the effect of caregiver guilt on their adjustment outcomes. METHOD: A total of 739 caregivers of cancer survivors completed a survey (66.7% response rate), of which 635 provided complete data for the measures in this study. RESULTS: Hierarchical regression analyses revealed that certain caregiver demographics (i.e., younger age, adult offspring, employed) and care-related stress factors (i.e., greater impact on schedule, less perceived caregiving competence, poorer overall health of the care-recipient) were significantly related to caregiver guilt. Higher levels of psychological distress and poorer mental, social, and physical functioning were significantly associated with caregiver guilt, above and beyond the variance accounted for by the covariates. CONCLUSION: Results suggest that caregiver guilt compromises the psychosocial and somatic adjustment of cancer caregivers. Guilt may be a cardinal feature of the caregiving experience, and to fully understand the implications of this complex phenomenon, more research is needed.

Colorectal cancer screening among midwestern community-based residents: indicators of success.

Screening reduces the rate of death and morbidity resulting from CRC. Although CRC screening rates are low relative to other cancer screening tests, rates appear to be increasing: In 2004, 57% of adults > or =50 years reported up-to-date CRC screening test use; 14 states and Washington DC showed rates in excess of 60%. Identification of indicators of success and challenges remaining are important for universal goal achievement. The purpose of this study was to identify system and individual-level indicators of up-to-date CRC screening in a geographic area that reports higher uptake rates. Random-digit-dialing methods were used to survey a population-based community sample (N = 1033) of Midwestern adults ages 50 to 79 for CRC screening uptake in spring 2005. Adjusted odds ratio estimates were obtained using multivariate logistic regression. In total, about 62.6% of the sample reported up-to-date CRC screening. Compliant attitudes toward physicians' screening recommendations were important indicators for up-to-date CRC screening; other individual-level psychosocial factors included beliefs about testing responsibility and testing safety. Non-current CRC screening was linked with testing anxiety and lack of perceived need for healthy people to test. System-level indicators associated with up-to-date CRC screening included reliance on physicians as the primary source for health information, family/personal history of bowel disease, regular physician visits, and participation in other cancer screening tests, controlling for age. Although population-based studies generally emphasize health system-level factors, individual-level attitudes such as feelings of responsibility to screen and adherence to physicians' screening recommendations are important contributors to up-to-date CRC screening patterns.

The skin cancer index: clinical responsiveness and predictors of quality of life.

OBJECTIVE: To establish the clinical responsiveness of the Skin Cancer Index (SCI), a new disease-specific quality of life (QOL) instrument, and to assess demographic and clinical factors which impact QOL in patients with nonmelanoma skin cancer (NMSC). STUDY DESIGN: Prospective study of 183 patients with NMSC of the face and neck referred to a tertiary care Mohs surgery clinic. METHODS: The SCI is a 15 item, validated, disease-specific QOL instrument with 3 distinct subscales, Emotion, Social, and Appearance. Higher scores reflect better QOL. The SCI and the Dermatology Life Quality Index (DLQI), a general dermatology instrument, was administered at initial consultation and 4 months after surgical treatment. Multivariate analysis was conducted to assess demographic and clinical factors predictive of QOL for both instruments. RESULTS: The SCI total score and all three subscale scores increased with treatment, demonstrating strong evidence of responsiveness over time (P < .001) in contrast with the DLQI (P = .46). Predictors of poorer QOL for the SCI included female sex and cancers located on the lip. Patients who demonstrated greatest improvement in QOL with treatment included those who were younger (<50 yr) and had lower reported household income. Also, first time NMSC patients and those patients who underwent less extensive reconstructions demonstrated greater improvements in QOL. CONCLUSION: The SCI is a sensitive and responsive QOL instrument for patients with NMSC. Distinct demographic and clinical variables that impact QOL have been demonstrated using this multidimensional, disease-specific instrument.

Objective risk, subjective risk, and colorectal cancer screening among a clinic sample.

Among cancers, colorectal (CRC) is the third most incident and the second most lethal. Although screening for the disease has been shown to be effective in reducing morbidity and mortality, screening rates remain low. Risk of disease has been shown to increase screening uptake, but different types of risk may influence intent to screen, screening in a timely manner, or participating in screening at all. A cross-sectional design was used to select a diverse sample of CRC asymptomatic patients 50 or more years of age (N=104) visiting one of three Midwestern medical clinics. Results showed a positive relationship between receipt of CRC screening and planning to screen for CRC in the future. Objective risk factors (personal/family history and having a primary care physician) were associated with CRC screening uptake and screening within the time intervals recommended by professional screening guidelines, but subjective risk did not obtain significance for screening participation. Both objective (primary care physician) and subjective risk (long-term comparative risk, knowledge) were associated with future plans to screen. Findings suggest that CRC screening behaviors may be differentially influenced by type of risk.

Validation of a quality-of-life instrument for patients with nonmelanoma skin cancer.

OBJECTIVE: To validate a disease-specific quality-of-life instrument--the Skin Cancer Index--intended to measure quality-of-life issues relevant to patients with nonmelanoma skin cancer. METHODS: Internal reliability, convergent and divergent validity with existing scales, and factor analyses were performed in a cross-sectional study of 211 patients presenting with cervicofacial nonmelanoma skin cancer to a dermatologic surgery clinic. RESULTS: Factor analyses of the Skin Cancer Index confirmed a multidimensional scale with 3 distinct subscales-emotional, social, and appearance. Excellent internal validity of the 3 subscales was demonstrated. Substantial evidence was observed for convergent validity with the Dermatology Life Quality Index, Rosenberg Self-Esteem Scale, Lerman's Cancer Worry Scale, and Medical Outcomes Survey Short-Form 12 domains for vitality, emotion, social function, and mental health. CONCLUSIONS: These findings validate a new disease-specific quality-of-life instrument for patients with cervicofacial nonmelanoma skin cancer. Studies on the responsiveness of the Skin Cancer Index to clinical intervention are currently under way.

Development of the facial skin care index: a health-related outcomes index for skin cancer patients.

BACKGROUND: Existing health-related quality-of-life (HRQOL) tools do not appear to capture patients' specific skin cancer concerns. OBJECTIVE: To describe the conceptual foundation, item generation, reduction process, and reliability testing for the Facial Skin Cancer Index (FSCI), a HRQOL outcomes tool for skin cancer researchers and clinicians. METHODS: Participants in Phases I to III consisted of adult patients (N=134) diagnosed with biopsy-proven nonmelanoma cervicofacial skin cancer. Data were collected via self-report surveys and clinical records. RESULTS: Seventy-one distinct items were generated in Phase I and rated for their importance by an independent sample during Phase II; 36 items representing six theoretical HRQOL domains were retained. Test-retest I results indicated that four subscales showed adequate reliability coefficients (alpha=0.60 to 0.91). Twenty-six items remained for test-retest II. Results indicated excellent internal consistency for emotional, social, appearance, and modified financial/work subscales (range 0.79 to 0.95); test-retest correlation coefficients were consistent across time (range 0.81 to 0.97; lifestyle omitted). CONCLUSION: Pretesting afforded the opportunity to select items that optimally met our a priori conceptual and psychometric criteria for high data quality. Phase IV testing (validity and sensitivity before surgery and 4 months after Mohs micrographic surgery) for the 20-item FSCI is under way.

Creation of a quality of life instrument for nonmelanoma skin cancer patients.

OBJECTIVE: Malignancies of the skin are the most common cancers among humans. The cervicofacial region is most affected by cutaneous malignancies, with approximately 80% of nonmelanoma skin cancers (NMSC) occurring in the head and neck. Treatment of cervicofacial skin cancers also is more likely to result in significant patient morbidity, because of the functional and cosmetic importance of this region. Unlike other malignancies, skin cancer has not been well investigated in terms of patient quality of life (QOL) assessment. Furthermore, no validated disease-specific QOL instrument currently exists for skin cancer. The aim of this study was to construct a new QOL instrument, The Facial Skin Cancer Index (FSCI), that captures the relevant QOL issues for NMSC patients. STUDY DESIGN: Cross-sectional study of patients presenting to a dermatologic surgery clinic with NMSC of the head and neck. METHODS: For stage I, item generation, a sample of 20 patients with cervicofacial NMSC and six health care providers specializing in the care of NMSC patients completed semistructured interviews. For stage II, item reduction, a second sample (n = 52) of NMSC patients rated the items in terms of their importance for QOL among skin cancer patients. Domains of the FSCI were evaluated in terms of data quality, item variability, internal consistency, and range and skewness of scale score on aggregation and floor and ceiling effects. RESULTS: A total of 71 distinct items were generated in stage I. After using the outlined item reduction techniques in stage II, the FSCI was reduced from 71 to 36 items, representing 6 domains. With the exception of Physical Functioning (alpha = 0.63) that suggested adequate reliability, all subscale scores showed excellent reliability coefficients, with Cronbach's alpha ranging from 0.78 (Lifestyle) to 0.87 (Social/Family). CONCLUSIONS: A new disease-specific QOL instrument for patients with NMSC of the head and neck has been created. Validation studies are currently underway. Future directions will include sensitivity analysis to determine whether the FSCI is sensitive to change over time among patients undergoing treatment for NMSC.

Colorectal cancer screening behavior and health insurance status (United States).

OBJECTIVE: The purpose of this study was to examine the association between health insurance status and CRC screening behavior among a diverse sample of ambulatory patients. METHODS: Cross-sectional, retrospective study. Quota sampling techniques were used to recruit 52 insured/uninsured patients > or =age 50 from three Midwestern medical clinics (N=104). Data were collected by interviewer-administered CRC screening questionnaires. RESULTS: Thirty-nine percent of the sample was in compliance with CRC testing guidelines. Insured compared to uninsured participants were significantly more likely to have ever completed any testing (77% versus 33%), and were more likely to have undertaken testing according to current US guidelines (62% versus 17%), all ps < 0.001. Insured participants also were significantly more likely than the uninsured to know about, receive physician recommendation to screen, and profess future intent to screen, ps < 0.001. Fewer uninsured participants were tested for routine reasons compared to insured participants. Significant group differences did not emerge on future preference for a particular screening methodology, if testing costs were equal. CONCLUSIONS: Results suggest that CRC screening depends, in part, on health insurance status. Increasing insurance coverage or resources for low-cost, accurate tests may facilitate future screening.

Oncology professionals and patient requests for cancer support services.

OBJECTIVE: To examine the kinds of psychosocial support services that cancer patients most often request across a multidisciplinary sample of currently practicing U.S. oncological health care professionals (OHCPs) representative of a typical cancer care team. PARTICIPANTS: Primary data collection. A randomly selected sample of 1,180 OHCPs (44% physicians, 24% nurses, 32% social workers) who were active members of their respective oncological associations completed a brief four-page mailed survey during the spring of 2001. METHODS: Cross-sectional, descriptive study. Descriptive statistics were computed for all study variables. ANOVA procedures were used to examine demographic difference between respondents and non-respondents. Frequencies were calculated for patient inquires for cancer support services inquiries, and logistic regression was used to evaluate professional group differences on inquiries. Chi-square statistics were used to test for significant differences between professional groups. RESULTS: Approximately 94% of OHCPs were asked about cancer-related support services by their patients. Quantitative data indicated that information and education about cancer (72%), support groups (65%), and hospice referral (52%) were paramount among patient concerns. Qualitatively, comments about transportation, lodging during treatment, and alternative medicine reflected the general sentiment that basic needs and opportunities for options may still be unmet. Patient inquiries for services varied significantly by professional group (p<.001). CONCLUSION: This information reflects the need for a multidisciplinary perspective and will be useful for planning patient-based cancer education and support initiatives, refining existing programs, and targeting materials to specific oncological professionals.

Skin cancer and quality of life: assessment with the Dermatology Life Quality Index.

BACKGROUND: Quality of life (QOL) has been identified as an important outcome in cancer research, yet the most common malignancy among humans, nonmelanoma skin cancer (NMSC), has been poorly studied in this regard. OBJECTIVE: To determine whether change occurred in the QOL of NMSC patients after surgery using a general, validated dermatology QOL instrument: the Dermatology Life Quality Index (DLQI). METHODS: A prospective study was conducted on 121 consecutive patients referred to a dermatologic Mohs surgery clinic with NMSC of the head and neck. QOL assessment was performed using the DLQI before (n=121) and after surgical treatment at 4 months (n=101). RESULTS: QOL scores demonstrated little handicap at initial diagnosis. The total DLQI scores showed little change over time, but an item analysis revealed that 2 of the 10 items demonstrated statistically significant change over time, with QOL improving after treatment-decreased painfulness/itchiness/soreness and less necessity to use concealing clothing. CONCLUSIONS: General dermatology QOL instruments demonstrated minimal handicap at initial diagnosis and little change after treatment of NMSC. Although the associations were modest, improvement in some aspects of well-being after treatment of NMSC was demonstrated. A more disease-specific instrument may be necessary to study this disease process further.

Quality of life and sun-protective behavior in patients with skin cancer.

OBJECTIVES: To determine whether change occurred in the general quality of life (QOL) of nonmelanoma skin cancer (NMSC) patients following surgery, to identify variables associated with patients' change in QOL, and to assess the impact of the disease and treatment on sun-protective behaviors and cigarette smoking. DESIGN: Longitudinal prospective study of 121 consecutive patients referred to a dermatologic Mohs surgery clinic with NMSC of the head and neck. INTERVENTIONS: Quality-of-life, smoking habit, and sun-protective behavior assessments were performed before treatment (N=121) and after surgical treatment at 1 (n=105) and 4 (n=101) months. Quality-of-life measures included the Medical Outcomes Study 36-Item Short-Form Health Survey and the Functional Assessment of Cancer Therapy-General. RESULTS: Overall, general QOL measures demonstrated little change over time. Only the mental (Medical Outcomes Study 36-Item Short-Form Health Survey) and emotional (Functional Assessment of Cancer Therapy-General) domains of QOL showed statistically significant change over time. A 2-way interaction showing effects for age and time on emotional well-being was modified by a 3-way interaction that depended on employment status. Emotional well-being scores for younger employed NMSC patients increased over time compared with scores among younger unemployed patients. In addition, many patients adopted greater use of sun-protective behaviors at 4 months following surgery. No change in cigarette smoking status was evidenced. CONCLUSIONS: Use of sun-protective behaviors increases after treatment. General QOL instruments demonstrate little change following treatment of NMSC. Although the associations are modest, improvements in emotional and mental health well-being following treatment of NMSC were demonstrated, especially for those younger than 65 years and employed. A disease-specific instrument may be necessary to further study this disease process.

Role and gender differences in cancer-related distress: a comparison of survivor and caregiver self-reports.

PURPOSE/OBJECTIVES: To examine role and gender differences on measures of psychological distress as a consequence of dealing with cancer. DESIGN: Cross-sectional, descriptive, quantitative analyses of retrospective survey data. SETTING: A large, nonprofit, volunteer-based cancer organization. The sample was recruited through an online cancer survivor's network (61%), a rural event (24%), and hospital registries (15%). SAMPLE: Convenience sample of 135 cancer survivors matched to their family caregivers (N = 270). METHODS: Dyads (i.e., survivors and family caregivers) completed matched questionnaires requesting demographic and medical information and measures of cancer-related distress. MAIN RESEARCH VARIABLES: Role (i.e., survivor or caregiver), gender, and psychological distress. FINDINGS: Caregiver means on overall psychological distress were significantly higher than those shown for survivors. Caregiver scores were significantly higher on distress for diagnosis and fear of cancer recurrence. Females scored higher than male caregivers on cancer-related anxiety, future uncertainties, fear of recurrence, and future diagnostic tests. Gender differences were not found for survivor distress. CONCLUSIONS: Results suggest a need for gender-specific, dyad-tailored cancer support services. IMPLICATIONS FOR NURSING: As expert caregivers, nurses can provide valuable assistance with the caregiving process that may decrease distress during the family's cancer experience and adaptation period.

Quality of life assessment in nonmelanoma cervicofacial skin cancer.

OBJECTIVES/HYPOTHESIS: Health-related quality of life (QOL) assessment of patients with nonmelanoma skin cancer is poorly understood. The objectives of the study were to determine the general QOL of patients with cervicofacial skin cancer and to identify patient, clinical, and preventive behavior variables associated with patients' QOL. STUDY DESIGN: Cross-sectional study of 121 consecutive patients (65 female and 56 male patients) presenting to a dermatological Mohs surgery clinic with nonmelanoma skin cancer of the head and neck. METHODS: Quality of life assessment was performed before counseling or treatment. Measures included the Medical Outcomes Study Short Form 36-item Health Survey (SF-36) and the Functional Assessment of Cancer Therapy-General (FACT-G). RESULTS: Both instruments demonstrated good internal consistency as measured by Cronbach's alpha (SF-36, alpha = 0.45-0.91; FACT-G, alpha = 0.61-0.90). The SF-36 scores were similar to historical norms. Bivariate analysis indicated significant correlation coefficients between QOL and patients' coexisting illnesses and medical risk factors. Sun-protective behaviors were associated with better QOL. The relationship appeared to be minimally influenced by patients' sociodemographic characteristics and disease-related variables (size, location, extent). CONCLUSIONS: Sun-protective behaviors were positively associated with certain QOL subscale scores in the population in the study. General QOL instruments demonstrated minimal impact of nonmelanoma skin cancer on patients at initial diagnosis. However, general measures may not be sensitive to the impact of nonmelanoma skin cancer. The development of a more disease-specific instrument may be necessary to evaluate this disease process.

Health status and life satisfaction among breast cancer survivor peer support volunteers.

Two measures of health-related quality of life (HRQOL), the Medical Outcomes Survey Short Form 36 (SF-36) and the Satisfaction with Life Domains Scale for Cancer (SLDS-C), were compared to examine the relationship between health status and life satisfaction among breast cancer survivors (BCSs). A total of 586 BCSs, all of whom were volunteers in peer support programs, met inclusion criteria and completed the self-report measures. Significant correlation coefficients were shown between life satisfaction and measures of health status. SF-36 scores were significantly higher for physical functioning, emotional well-being, and vitality subscales compared to population norms. BCSs expressed greatest dissatisfaction with their sexual ability, physical strength, and bodies in general. Small age differences were found. Results suggest that incorporating multiple measures of HRQOL contribute to the understanding and measurement of the effects of cancer on perceived health status and life satisfaction.

Healthcare professionals' awareness of cancer support services.

PURPOSE: This study was conducted to provide baseline information about the awareness, attitude, and willingness of oncology healthcare providers (HCPs) to recommend quality-of-life cancer education and support services to their patients. DESCRIPTION OF STUDY: A brief survey questionnaire was mailed to a random sample of 2000 physicians, nurses, and social workers who were active members of their respective oncology associations. RESULTS: A total of 1241 questionnaires were returned (62% reply rate), resulting in a final sample of 1180 HCPs (61% response rate). Among HCPs who referred patients to cancer organizations, the American Cancer Society (ACS; 83%), the National Cancer Institute (NCI; 55%), and the Leukemia and Lymphoma Society ([formerly Leukemia Society of America] 42%) ranked at the top. More than 70% of HCPs indicated that they had heard about specific ACS programs and services or the NCI information hotline. Less than 60% of HCPs recommended or thought these same services were helpful to patients. Awareness, referrals, and attitudes toward cancer support services among HCPs were significantly related (P <.001). Qualitative comments qualified quantitative results. CLINICAL IMPLICATIONS: Although a surprising number of HCPs were aware of support services, fewer recommended or reported satisfaction with these services. HCPs' referrals and attitudes toward cancer psychosocial support services may be improved by assembling a concise directory of locally available resources, directing this information to HCPs who refer directly to cancer organizations, improving collaboration between agencies, increasing staff support, and targeting particular services in specific areas of the country for program monitoring and development.