PlatformTM, a standards-based data custodianship platform for translational medicine research.

Biomedical informatics has traditionally adopted a linear view of the informatics process (collect, store and analyse) in translational medicine (TM) studies; focusing primarily on the challenges in data integration and analysis. However, a data management challenge presents itself with the new lifecycle view of data emphasized by the recent calls for data re-use, long term data preservation, and data sharing. There is currently a lack of dedicated infrastructure focused on the 'manageability' of the data lifecycle in TM research between data collection and analysis.

Adenomyoepithelioma with ductal carcinoma in situ: a case report and review of the literature.

Adenomyoepithelioma (AME) with microglandular adenosis-like growth pattern and superimposed ductal carcinoma in situ (DCIS) was identified in a 55-year-old female after biopsy of an atypical lesion identified through routine breast screening. A literature review reveals that this association has rarely been described.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

Tuberculous paraplegia in pregnancy treated by surgery.

Tuberculous paraplegia in pregnancy is reported to be rare. Paraplegia due to tuberculosis has a good prognosis if surgical decompression and stabilisation are done early together with chemotherapy. Vaginal delivery is not contraindicated in pregnancy complicated by paraplegia, but is associated with problems related to the initiation and progression of labour.

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.

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).