Journal of pain and symptom management
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J Pain Symptom Manage · Dec 2009
Breast cancer survivors' experiences of lymphedema-related symptoms.
As a serious chronic condition from breast cancer treatment, lymphedema or a syndrome of persistent swelling and symptoms is caused by chronic accumulation of lymph fluid in the interstitial spaces of the affected limb or surrounding areas. Although significant prevalence of ongoing multiple symptoms has been reported, little is known about how survivors with lymphedema perceive and respond to lymphedema-related symptoms in their daily lives. ⋯ Findings suggest that symptom distress may encompass temporal, situational, and attributive dimensions. Prospective studies are needed to examine lymphedema-related symptom distress in terms of these dimensions so that more specific interventions can be developed to target distress occurring in each dimension.
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J Pain Symptom Manage · Dec 2009
Mental health outcomes of family members of Oregonians who request physician aid in dying.
Oregon legalized physician aid in dying over 10 years ago but little is known about the effects of this choice on family members' mental health. We surveyed 95 family members of decedent Oregonians who had explicitly requested aid in dying, including 59 whose loved one received a lethal prescription and 36 whose loved one died by lethal ingestion. For comparison purposes, family members of Oregonians who died of cancer or amyotrophic lateral sclerosis also were surveyed. ⋯ Comparing family members of those who requested aid in dying to those who did not revealed no differences in primary mental health outcomes of depression, grief, or mental health services use. Family members of Oregonians who requested aid in dying felt more prepared and accepting of the death than comparison family members. In summary, pursuit of aid in dying does not have negative effects on surviving family members and may be associated with greater preparation and acceptance of death.
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J Pain Symptom Manage · Dec 2009
ReviewA framework for assessing quality indicators for cancer care at the end of life.
Patients with advanced cancer often do not receive high-quality pain and symptom management or support with coordination of care, communication, and decision making. Implementing quality indicators that are reflective of the scope of care, feasible to implement, and supported by evidence might help to identify areas and settings most in need of improvement. However, recent reviews and policy initiatives identified only a few indicators that met these criteria. ⋯ Domains include the structure and processes of care; the physical, psychiatric, psychosocial, spiritual, and cultural aspects of care; as well as the care of the imminently dying, ethical and legal issues, and the delivery of care. Evaluation criteria include importance; scientific acceptability, including validity, evidence to improve outcomes, reliability, responsiveness, and variability; usability; and feasibility, including ready data sources. By using this conceptual framework, indicator developers, researchers, and policymakers can refine and implement indicator sets to effectively evaluate and improve care at the end of life.
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J Pain Symptom Manage · Dec 2009
Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis.
Cystic fibrosis (CF) has been transformed from a fatal diagnosis in infancy to a chronic disease of children and young adults. Symptom patterns and disease burden in CF may be shifting to reflect the relatively healthier, older population with the disease. Self-management of symptoms is a hallmark of chronic illness, and yet we do not have a good understanding of how CF patients monitor or manage their symptoms. ⋯ A variety of pharmacological and nonpharmacological treatments were used to manage symptoms. Pain and dyspnea are more common than suspected and a wide variety of pharmacological and nonpharmacological measures are used to treat symptoms. Cough is difficult to assess, but disturbed sleep may be an indicator of cough severity and an important symptom to consider when evaluating the overall burden of illness in those with CF.