A Comparison of the Request Process and Outcomes in Adult and Pediatric Organ Donation.

BACKGROUND AND OBJECTIVES: Although existing studies suggest that factors affecting families' decisions regarding pediatric organ donation mirror those for adult patients, health professionals working in this area maintain that pediatric and adult decision-makers differ in significant ways. This study compared the request process, experiences, and authorization decisions between family decision-makers (FDMs) of adult and pediatric donors and nondonors. METHODS: Perceptions of the donation request were collected via telephone interviews with 1601 FDMs approached by staff from 9 US organ procurement organizations (OPOs). Authorization regarding donation (ie, authorized/refused) was obtained from FDM reports and verified by using OPO records. Tests of association were used to estimate differences between FDMs of adult and pediatric patients. A logistic regression analysis was conducted to identify variables predicting FDM authorization. RESULTS: FDMs of children were significantly more likely to authorize donation than were FDMs of adults (89.7% vs 83.2%; χ(2) = 6.2, P = .01). Differences were found between pediatric and adult families' initial feelings toward donation, donation-related topics discussed, communication behaviors and techniques used, perceptions of the request, and receipt and preference of grief information. The likelihood of FDM authorization increased with the number of topics discussed and communication skills employed during requests. Authorization was not predicted by patient age (ie, adult versus pediatric). CONCLUSIONS: FDMs of children are willing to donate and experience no more psychological distress from the request for donation than do FDMs of adults. Communication emerged as a critical factor of family authorization, reinforcing its importance in requests for donation.

Influences of patient sociodemographics on cancer information received through the first 9 months of treatment.

This study evaluates the amount and change of information cancer patients report receiving related to disease, diagnostic tests, treatments, physical care, and psychosocial resources over 9 months of treatment. Information received by newly diagnosed, stages II-IV cancer patients receiving treatment (N = 139) at baseline, 4, and 9 months is examined through a two-stage latent growth model. Each information-received category was modeled with latent variables of intercept and slope. Random intercept and slope factors are then regressed on multiple sociodemographic covariates. The mean amount of information received does not change over time, but significant inter-individual variability was observed. Age (younger) and marital status (married) are significantly associated with a higher total amount of information received while education (less) and race (African-American) are significantly associated with slower declines of information received over time. While the mean amount of information cancer patients receive is relatively constant over the course of treatment for the first 9 months, the level and rate of information received is somewhat varied based on patient characteristics. Healthcare professionals need to be aware of the varying amounts of information received by patients and ensure that the amount is consistent with the patient's individual needs.

The value of an educational video before consultation with a radiation oncologist.

This study aims to assess the efficacy of a radiation therapy (RT) education video for patients referred for treatment. The investigators produced a 23-min guide to radiation therapy DVD, combining didactic material and patient narratives. Patients (n=32) had not yet received their initial consultation. Baseline awareness about cancer and treatment was assessed by surveys including the rapid estimate of adult literacy in medicine. Knowledge about RT was assessed before and after viewing the video with a separate 21 question survey. Differences in benefit for sociodemographic subgroups including age, gender, ethnicity, income, education, and health literacy level were explored. Baseline assessments identified 78 % of patients regardless of sociodemographic status had "little" to "no" basic knowledge of RT. The mean number of correct responses in the 21 question survey assessing how RT works improved from 9.8 to 11.1 after watching the video (p<0.0001; 95 % CI: 1.3-3.0), a statistically significant benefit that was present among all sociodemographic subgroups, but more prominent among those with a greater than high school education (p=0.002). Patient satisfaction with the video was high. Knowledge among cancer patients regarding RT is poor, regardless of sociodemographic factors. This pilot study demonstrates the utility of a brief video to universally improve patient awareness about RT. While patients may ultimately learn about RT during their course of treatment, we advocate for any tools that can improve patient knowledge at the time of initial consultation as this is typically the time they are asked to acknowledge informed consent for treatment.

Cancer patients' information needs the first nine months after diagnosis.

OBJECTIVE: Cancer patients' information needs about disease, diagnostic tests, treatments, physical care, and psychosocial resources during treatment are examined. METHODS: Information needs of newly diagnosed, Stages II-IV cancer patients receiving treatment (N=138) were studied over nine months. Information needs were assessed using The Toronto Informational Needs Questionnaire (TINQ). There are five subscales for the TINQ: disease, diagnostic tests, treatment, physical and psychosocial. Health literacy and amount of information wanted were also measured. A repeated measures, univariate two-level model for longitudinal data was analyzed. Separate models for each subscale were constructed and covariates were examined simultaneously for associations with information needs. Models were estimated using FIML. RESULTS: Although significant reduction of needs was observed over time, total information needs remained high throughout. Gender (women), age (younger), race (African American), education (lesser), and marital status (married) were significantly associated with higher information needs over time. Cancer type and stage were not significantly associated. CONCLUSION: Cancer patients' information needs decrease yet remain high over time. Patients' information needs are highest near diagnosis and change throughout the course of their treatment. PRACTICE IMPLICATIONS: As patients obtain and understand information, they will continue to need information in new areas relevant to their care.