Self-reported distress in patients with ovarian cancer: is it related to disease status?

OBJECTIVE: Patients with epithelial ovarian cancer have a poor prognosis and often undergo intensive treatment. These patients are therefore at risk for experiencing distress and reduced quality of life. The aim of this study was to explore the self-reported distress severity, experienced problems, and quality of life in relation to their disease status. METHODS: This cross-sectional study was conducted in 2011 at a University Medical Center. Women with ovarian cancer (n = 273), both during and after treatment, were asked by mail to fill in self-report questionnaires. Distress was measured using with the Distress Thermometer (DT), Hospital Anxiety and Depression Scale, and Impact of Event Scale. Problems and quality of life were assessed with the problem list of the DT, and European Organization for Research and Treatment of Cancer Quality of Life C-30 and OV28. RESULTS: The questionnaire data of 104 patients were analyzed. Screening with the DT revealed distress in 32% [mean (SD), 3.1 (2.6)]. Distress was found with the Hospital Anxiety and Depression Scale in 14% [8.6 (5.9)] and with the Impact of Event Scale in 18% of the patients [17.5 (15.5)]. No significant differences were found in distress severity and self-reported problems between patients with and without recurrence. In both groups, the problems fatigue, condition, and neuropathy were most reported. Patients with distress (DT ≥ 5) experienced significantly worse functioning, more problems, and lower quality of life than patients without distress (P < 0.01). CONCLUSIONS: This study showed that disease status in patients with ovarian cancer seems to have no influence on distress, quality of life, and the problems encountered. However, distressed patients experienced more problems, with physical and emotional functioning, and had lower quality of life. The problems fatigue, physical condition, and neuropathy are the most prevailing.

Usage of a generic web-based self-management intervention for breast cancer survivors: substudy analysis of the BREATH trial.

BACKGROUND: Generic fully automated Web-based self-management interventions are upcoming, for example, for the growing number of breast cancer survivors. It is hypothesized that the use of these interventions is more individualized and that users apply a large amount of self-tailoring. However, technical usage evaluations of these types of interventions are scarce and practical guidelines are lacking. OBJECTIVE: To gain insight into meaningful usage parameters to evaluate the use of generic fully automated Web-based interventions by assessing how breast cancer survivors use a generic self-management website. Final aim is to propose practical recommendations for researchers and information and communication technology (ICT) professionals who aim to design and evaluate the use of similar Web-based interventions. METHODS: The BREAst cancer ehealTH (BREATH) intervention is a generic unguided fully automated website with stepwise weekly access and a fixed 4-month structure containing 104 intervention ingredients (ie, texts, tasks, tests, videos). By monitoring https-server requests, technical usage statistics were recorded for the intervention group of the randomized controlled trial. Observed usage was analyzed by measures of frequency, duration, and activity. Intervention adherence was defined as continuous usage, or the proportion of participants who started using the intervention and continued to log in during all four phases. By comparing observed to minimal intended usage (frequency and activity), different user groups were defined. RESULTS: Usage statistics for 4 months were collected from 70 breast cancer survivors (mean age 50.9 years). Frequency of logins/person ranged from 0 to 45, total duration/person from 0 to 2324 minutes (38.7 hours), and activity from opening none to all intervention ingredients. 31 participants continued logging in to all four phases resulting in an intervention adherence rate of 44.3% (95% CI 33.2-55.9). Nine nonusers (13%), 30 low users (43%), and 31 high users (44%) were defined. Low and high users differed significantly on frequency (P<.001), total duration (P<.001), session duration (P=.009), and activity (P<.001). High users logged in an average of 21 times, had a mean session duration of 33 minutes, and opened on average 91% of all ingredients. Signing the self-help contract (P<.001), reporting usefulness of ingredients (P=.003), overall satisfaction (P=.028), and user friendliness evaluation (P=.003) were higher in high users. User groups did not differ on age, education, and baseline distress. CONCLUSIONS: By reporting the usage of a self-management website for breast cancer survivors, the present study gained first insight into the design of usage evaluations of generic fully automated Web-based interventions. It is recommended to (1) incorporate usage statistics that reflect the amount of self-tailoring applied by users, (2) combine technical usage statistics with self-reported usefulness, and (3) use qualitative measures. Also, (4) a pilot usage evaluation should be a fixed step in the development process of novel Web-based interventions, and (5) it is essential for researchers to gain insight into the rationale of recorded and nonrecorded usage statistics. TRIAL REGISTRATION: Netherlands Trial Register (NTR): 2935; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2935 (Archived by WebCite at http://www.webcitation.org/6IkX1ADEV).

Psychometric properties of the 45-item supportive care needs survey-partners and caregivers - Dutch (SCNS-P&C45-D) in partners of patients with breast cancer.

OBJECTIVE: To test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands. METHODS: In this cross-sectional validation study, partners of patients with breast cancer were invited to complete a survey on the patient's cancer and the caregiver's level of unmet needs (SCNS-P&C45-D), psychological distress (HADS) and burden (EDIZ). RESULTS: 43% of the invited informal caregivers responded (n = 302). Flooring effects were identified for three items of the SCNS-P&C45-D,which were then deleted from further analysis. The original factor structure and loading pattern of the SCNS-P&C45-D was not replicated. Internal consistency of the SCNS-P&C45-D and all subscales' (emotional and relational needs, health care and illness related needs, practical needs, work and social needs) Cronbach's alpha coefficients exceeded 0.80, the entire measure's Cronbach's alpha is 0.98. Most SCNS-P&C45-D subscales showed moderate correlations with distress and burden from informal care which was in line with expectations based on validity. The domain 'Work and Social needs' showed a high correlation with burden from informal care. Participants reported significantly more or higher unmet needs if they were younger (25.5% vs. 20.3% in older patients, p = 0.004), if diagnosis was less than 1 year ago in one subscale (Health Care and Illness related needs; 19.5% and 18%, p = 0.029, and the total SCNS-P&C45-D; 23.2% vs. 22.4%, p = 0.018). CONCLUSIONS: The SCNS-P&C45-D is able to identify those partners of patients with breast cancer in need and those who are not.