A family-centered intervention for the transition to living with multiple myeloma as a chronic illness: A pilot study.

Patients with multiple myeloma and their family caregivers must master self-management tasks related not only to the disease and treatment, but also associated with transitioning to living with chronic illness. The aim of this study was to assess the feasibility, acceptability, safety, and fidelity of an intervention that had a psychoeducational approach and included a low-impact, home-based walking activity. A secondary aim was to obtain preliminary data of the effect of the intervention, as compared to an attention control group, on anxiety, activation for self-management, fatigue, depression and health-related quality of life (HRQOL). A sample of 15 adult patients with multiple myeloma and their family caregivers were randomized into either an intervention or attention-control group. The intervention was delivered to the dyad in one session and booster calls were made at 1 and 3 weeks. The control group received printed educational resources and telephone contacts. Measures were done at baseline, and 6 and 12 weeks. Descriptive statistics were used. The intervention was safe, feasible, and acceptable to patients and caregivers. Fidelity was high for the initial session, but low with booster calls. Improvement in scores for activation, fatigue, depression, anxiety, physical HRQOL, and emotional distress was seen in at least 40% of patients in the intervention group. Fewer caregivers in the intervention group showed improvement on the outcome variables. Leveraging a behavioral strategy such as walking, along with supportive and educational resources, is promising for promoting well-being within the patient/caregiver dyad. Further refinement of the intervention is needed to strengthen its efficacy for the caregiver and exploratory work is essential to understand the interpersonal supportive processes associated with the walking activity.

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.

The Accuracy of Nurses' Predictions for Clinical Outcomes in the Chronically Critically Ill.

BACKGROUND: Accurately predicting survivorship of patients in the intensive care unit is known to be difficult. Previous research has shown that nurses are more likely to recognize futile medical care than other disciplines. The purpose of this study was to describe the accuracy of nurse's predictions for survival of patients who are chronically critically ill (CCI). METHODS: Using a secondary data analysis from a longitudinal, descriptive study, we evaluated nurses' predictions for survival at admission and until ICU discharge or patient death. RESULTS: Nurses were able to more accurately predict survival of CCI patients than death and prognostication appeared to improve with prolonged ICU stays. CONCLUSION: This is the first longitudinal study that focused on nurse prognostication in a chronically critically ill patient population. Future research should explore the relationship between ICU nurse characteristics and the accuracy of survival predictions.