Quality of life of persons living with HIV and congruence with surrogate decision-makers.

PURPOSE: Physicians and caregivers rate patient quality of life (QOL) lower than patients rate their own QOL. This study investigated discrepancies between self-assessments of patient QOL by adults with HIV and their surrogate decision-makers. METHODS: We collected baseline data from 223 adult dyads in the FAmily-CEntered (FACE) Advance Care Planning (ACP) clinical trial, consisting of HIV positive patients and their chosen surrogates. Participants independently completed the Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). We used Wilcoxon Signed-Rank Test to assess differences in overall patient-surrogate means. We used Prevalence Adjusted Bias Adjusted Kappa (PABAK) statistics to assess dyadic agreement, with surrogate HIV status and cohabitation status as grouping variables. RESULTS: Patients were 56.1% male, 86.1% Black/African-American, aged 22-77 (mean = 50.83, SD = ± 12.33). Surrogates were 43.8% male, 84.1% Black/African-American, aged 18-82 (mean = 49.73, SD = ± 14.22). 46.2% of surrogates lived with the patient. 64.6% of surrogates reported negative HIV status. Surrogates were more likely to state patients were ill, p = 0.032. Among patient-surrogate dyads, most QOL assessments showed poor (0.00-0.39) or fair (0.40-0.59) agreement and agreement tended to be even poorer among patient-surrogate dyads where the surrogate had a shared HIV diagnosis. CONCLUSIONS: QOL discrepancies are said to arise from healthy surrogates overestimating the effects of chronic illness. In this novel assessment, many surrogates had a shared HIV diagnosis, without increased agreement. These findings highlight the challenge of accurately assessing patient QOL by surrogates, even when there is a shared HIV diagnosis. Improved communication is needed between patients and surrogates about the patients' representation of illness. National Clinical Trial Number: NCT01775436.

The relationship between chronic musculoskeletal pain, anxiety and mindfulness: Adjustments to the Fear-Avoidance Model of Chronic Pain.

BACKGROUND AND PURPOSE: The Fear-Avoidance Model of Chronic Pain proposed by Vlaeyen and Linton states individuals enter a cycle of chronic pain due to predisposing psychological factors, such as negative affectivity, negative appraisal or anxiety sensitivity. They do not, however, address the closely related concept of anxious rumination. Although Vlaeyen and Linton suggest cognitive-behavioral treatment methods for chronic pain patients who exhibit pain-related fear, they do not consider mindfulness treatments. This cross-sectional study investigated the relationship between chronic musculoskeletal pain (CMP), ruminative anxiety and mindfulness to determine if (1) ruminative anxiety is a risk factor for developing chronic pain and (2) mindfulness is a potential treatment for breaking the cycle of chronic pain. METHODS: Middle-aged adults ages 35-50 years (N=201) with self-reported CMP were recruited online. Participants completed standardized questionnaires assessing elements of chronic pain, anxiety, and mindfulness. RESULTS: Ruminative anxiety was positively correlated with pain catastrophizing, pain-related fear and avoidance, pain interference, and pain severity but negatively correlated with mindfulness. High ruminative anxiety level predicted significantly higher elements of chronic pain and significantly lower level of mindfulness. Mindfulness significantly predicted variance (R2) in chronic pain and anxiety outcomes. Pain severity, ruminative anxiety, pain catastrophizing, pain-related fear and avoidance, and mindfulness significantly predicted 70.0% of the variance in pain interference, with pain severity, ruminative anxiety and mindfulness being unique predictors. CONCLUSIONS: The present study provides insight into the strength and direction of the relationships between ruminative anxiety, mindfulness and chronic pain in a CMP population, demonstrating the unique associations between specific mindfulness factors and chronic pain elements. IMPLICATIONS: It is possible that ruminative anxiety and mindfulness should be added into the Fear-Avoidance Model of Chronic Pain, with ruminative anxiety as a psychological vulnerability and mindfulness as an effective treatment strategy that breaks the cycle of chronic pain. This updated Fear-Avoidance Model should be explored further to determine the specific mechanism of mindfulness on chronic pain and anxiety and which of the five facets of mindfulness are most important to clinical improvements. This could help clinicians develop individualized mindfulness treatment plans for chronic pain patients.

Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT.

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14-20years old with cancer and their family decision maker (≥18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes.