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Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.
Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).
Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.
Significance of results:
The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.
The developmental/congenital disorders are a gray area between core idiopathic and core acquired epilepsies, and their inclusion under the term symptomatic epilepsy reflects the inevitably artificial nature of all classification schemes. This chapter talks about epilepsy syndromes, temporal characteristics of acquired epilepsy, and provoked epilepsies. The term 'acquired' is used to refer to symptomatic epilepsies excluding the predominately genetic or developmental causes. The main reason for considering epilepsy a symptom is that there are so many different causes, and it is therefore perhaps ironical to note that the current classifications of epilepsy pay no heed to etiology at all, focused as they are on clinical and electrographic semiology. It is clear that the distinctive natures of the underlying pathological and physiological processes underlying symptomatic epilepsy after acute brain insults are very different from those underlying idiopathic epilepsy, and so are the clinical, therapeutic, and prognostic features.
To evaluate nonpharmacologic interventions, caregivers (65 women, 38 men) and their dementia-diagnosed spouses (patients) were randomized to one of four treatment programs (cognitive stimulation, dyadic counseling, dual supportive seminar, and early-stage day care) or to a wait-list control group. Assessments occurred initially and at postintervention (3 months). Patients were evaluated on memory, verbal fluency, and problem-solving ability, and caregivers were assessed on marital interaction, emotional status, and physical health, along with stress, coping, and social support. Caregivers also completed a program evaluation. Repeated measures procedures showed that patients in the cognitive stimulation group demonstrated more improvement over time in cognitive outcomes, and caregivers decreased in depressive symptoms. Early-stage day-care and dual supportive seminar group caregivers reported a decrease in hostility and a decrease in use of negative coping strategies, respectively. Although qualitatively derived benefits differed across groups, similarities in program content reduced the potential for quantitative differentiation among the groups.
The goal of treatment for many persons with cancer is not cure but improvement or maintenance of functioning and well-being during their remaining period of life. This is particularly true for patients with advanced or metastatic cancers. Trials to produce evidence of effectiveness or for regulatory approval may include patient assessments of benefit as well as classical clinical endpoints used in oncology settings. These patient assessments of treatment benefit may or may not be related to the traditional measures of treatment success such as survival, tumor shrinkage, or time to tumor progression. For this reason, additional outcome measures to estimate benefit or risk/benefit trade-offs have been developed. Outcomes measures in this category of health assessment are referred to as patient-reported outcomes (PROs) because they are used to collect data directly from the patient.
It is increasingly recognized that the patient's perspective is unique and represents a valuable contribution to drug evaluation and treatment processes. This is particularly important when studying the effects of treatments on cancer symptoms such as pain and fatigue, outcomes not accurately measured by observers. Recent changes in the health care system have greatly empowered patients who are now considered partners rather than passive consumers. To maximize their contribution, they need to be informed about the outcomes associated with treatment. Patients are not always concerned with the same questions as treating physicians or clinical researchers.
Little is known of the needs of elderly patients with psychotic illnesses.
To measure the care needs of an epidemiologically based group of patients over the age of 65 years suffering from psychotic illness, using a standardised assessment.
All patients aged 65 years and over with a diagnosis of schizophrenia and related disorders from a defined catchment area were identified. Their health and social care needs were investigated using the Cardinal Needs Schedule.
The 1-year prevalence of schizophrenia and related disorders was 4.44 per 1000 of the population at risk. There were high levels of unmet need for many patients, including those in National Health Service (NHS) continuing-care beds.
Many needs were identified, all of which could be addressed using the existing skills of local health and social care professionals. The investigation raises serious concerns about standards of hospital and community care for elderly patients with schizophrenia. The findings may be unique, reflecting long-standing problems within a particularly hard-pressed part of the NHS. However, it is not known whether a similar situation exists in other parts of the UK.
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