A Comparison between Lynch Syndrome and Sporadic Colorectal Cancer Survivors’ Satisfaction with their Healthcare Providers

This study evaluated provider satisfaction in a sample of colorectal cancer (CRC) survivors with and without Lynch syndrome (LS). Participants were case–case-matched CRC survivors with (n=75) or without (n=75) LS (mean age of 55; range: 27–93). Participants completed a mailed questionnaire assessing demographics, clinical characteristics, healthcare utilization, psychosocial variables, and provider satisfaction. LS CRC survivors reported lower provider satisfaction scores on three subscales of the Primary Care Assessment Survey: communication (78.14 vs. 83.96; P\u3c0.05), interpersonal treatment (78.58 vs. 85.30; P\u3c0.05), and knowledge of the patient (60.34 vs. 69.86; P\u3c0.01). Among LS CRC survivors, predictors for mean communication and trust subscale scores were location of treatment and socioeconomic status. Higher mean depression scores also were associated with trust, while social support predicted higher satisfaction with communication. Sporadic CRC survivor satisfaction is driven largely by age (communication, interpersonal treatment) and patient anxiety (communication), while seeing a provider more often was associated with increased satisfaction with knowledge of the patient. LS CRC survivors reported lower levels of provider satisfaction than sporadic CRC survivors. LS survivors who received care at The University of Texas MD Anderson Cancer Center, a comprehensive cancer center (CCC), reported higher satisfaction than those receiving care at other institutions. Depressive symptoms and socioeconomic status may impact provider satisfaction ratings. Exploration of other potential predictors of provider satisfaction should be examined in this population. Additionally, further research is needed to examine the potential impact of provider satisfaction on adherence to medical recommendations in LS CRC survivors, particularly those being treated outside of CCCs

Patients educating health care providers on Lynch syndrome

Objective: Lynch syndrome (LS) patients are at an elevated risk for early-onset cancers, including endometrial and colorectal (CRC). Prior research has shown a deficit in provider knowledge of LS, which may affect patient satisfaction and adherence to recommended screening and surveillance regimens. Studies suggest patients with LS may educate providers perceived as lacking LS knowledge; however, little is known about these interactions. The goal of this study is to assess patient-reported outcomes from clinical interactions where LS patients educate their providers. Methods: Participants (n=55) were asked to complete an in-depth telephone interview. Results: Out of 55 participants, approximately two-thirds (n=37) reported engaging in educational interactions. Participants reported feeling satisfied with the provider response in over half of the reported educational interactions (n=24). Participants reported changes in their patient-provider relationship ranging from improvements in their relationship to termination of services. Conclusion: Patients with LS report educating providers on their diagnosis as well as their screening and surveillance requirements. Patient-reported outcomes of these educational interactions vary based on the provider’s response to the interaction. Providers should be open and receptive to these educational interactions and follow-up on the discussion to improve patient satisfaction

Caregiver Experience During Advanced Chronic Illness and Last Year of Life

Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life

Perceptions of Forgetfulness in Adulthood

In two experiments, we examined younger and older participants\u27 appraisals of memory failures in fictitious characters portrayed as younger (in their 20\u27s to 30\u27s) or older (in their 60\u27s to 70\u27s) adults. Participants read vignettes where forgetful behavior had minor or more severe consequences for the target character (Experiment 1) or for the character and others in the social environment (Experiment 2). Participants rated potential causes of the forgetfulness and opinions concerning the target character\u27s cognitive health. In Experiment 1, an age-based double standard was observed, where both age groups rated ability as a cause of forgetting more often for older than younger characters. Ratings of forgetfulness as a sign of mental difficulty, need for memory training, and professional evaluation were also higher for older compared to younger characters. In Experiment 2, the Attribution Type by Target Age interaction effect was replicated. Ability and effort contributed to the significance of the interaction, confirming the reliability and generalizability of the age-based double standard. Forgetfulness was rated as a sign of mental difficulty more often for the older than younger characters, replicating Experiment 1. In both experiments, the consequences of the forgetting had a large impact on the attribution and opinion ratings for younger and older forgetful characters. These data suggest that people of all ages evaluate forgetful characters in light of situational outcomes as well as ageist presumptions of cognitive frailty in later life

Health-related quality of life in colorectal cancer survivors: are there differences between sporadic and hereditary patients?

Abstract Purpose To compare health-related quality of life (HRQoL) in colorectal cancer (CRC) survivors with sporadic CRC to those with hereditary cancer, specifically Lynch syndrome (LS). Methods Participants completed a mailed self-administered questionnaire that assessed, among other things, demographics, clinical characteristics, and health-related quality of life. Using a case-case design, CRC survivors with LS or sporadic cancer were matched on age, sex, race/ethnicity, cancer stage, geography, and time since diagnosis. Participants were recruited from patient registries at The University of Texas MD Anderson Cancer Center (MD Anderson) (n = 33 LS; n = 75 sporadic) and through social media (n = 42 LS). The final sample included 71 LS and 74 sporadic CRC survivors. Results For LS patients, the mean FACT-C HRQoL score was 84.8 (11.9) [Median = 86.0; Interquartile Range-17] compared to sporadic patients mean score of 85.8 (16.7) [Median = 92.0; Interquartile Range-21], which indicates high quality of life for both groups. LS patients and sporadic CRC patients had similar HRQoL mean scores across 7 different HRQoL metrics, with no significant differences between groups. Exploratory regression analyses indicate some differences in known predictors of HRQoL by group despite no bivariate differences. Conclusions HRQoL is an important component of survivorship in CRC patients. Given the clinical distinctions between LS and sporadic patients, we expected to find significant differences between these patients. However, the patients’ experiences/quality of life does not appear to illustrate such a clear dissimilarity within CRC survivors. Given the limited data in this area, larger studies, ideally with data obtained from multiple sites, is needed to better investigate the alignment between clinical determination and patient experience as well as to explore the relationship between HRQOL, treatment regimens, and health outcomes