Journal of pain and symptom management, Jan 2008, vol. 35, no. 1

Family caregivers' assessment of symptoms in patients with advanced cancer: concordance with patients and factors affecting accuracy.

Journal of pain and symptom management, Jan 2008 (epub: 05 Nov 2007), vol. 35, no. 1, p. 70-82,

McPherson-Christine-J, Wilson-Keith-G, Lobchuk-Michelle-M, Brajtman- Susan.
Author affiliation
School of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, Canada. christine.mcpherson@uottawa.ca.
Abstract
The purposes of the study were to examine the concordance between patients' and family caregivers' assessments of patients' symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. Sixty-six patients with advanced cancer receiving palliative care, and their primary, informal caregivers assessed patients' symptoms using the Memorial Symptom Assessment Scale (MSAS). Levels of agreement for individual symptoms ranged from poor to excellent (interclass correlation coefficient 0.07-0.75). Analysis of the group means using paired t-tests revealed significant differences for the MSAS subscales (psychological, physical, and general distress index), and for four of the 12 physical symptoms and five of the six psychological symptoms. The magnitude of the observed differences indicated a small to moderate bias for caregivers to overestimate, which was more marked for psychological than for physical symptoms. A number of factors associated with the caregiver (particularly the emotional state, the burden of providing care, and male gender) and the patient (the perception of being a burden to others) were significantly correlated with levels of disparity on some measures. The findings are consistent with the growing body of literature on the validity of proxy respondents' assessments of patients' symptoms.


Clinical and demographic characteristics help explain variations in pain at the end of life.

Journal of pain and symptom management, Jan 2008 vol. 35, no. 1, p. 10-9

Strassels-Scott-A, Blough-David-K, Veenstra-David-L, Hazlet-Thomas-K, Sullivan-Sean-D.
Author affiliation
Division of Pharmacy Practice, University of Texas at Austin College of Pharmacy, Austin, Texas, USA. scotts1@mail.utexas.edu.
Abstract
The natural history of pain at the end of life is not well understood. The purpose of this study was to estimate the association between clinical and demographic characteristics and pain in persons who received hospice care in the United States. Data for this study were obtained from a national provider of hospice pharmacy services and included information about the hospice and person receiving hospice care, including geographic location, primary diagnoses, pain intensity, and opioid analgesic use. The data were collected from 2000 to 2004. Worst pain intensity during the previous 24 hours was assessed by the hospice nurse using a 0-10 numeric rating scale (0=none, 10=worst) at an average of 4.1 times per person during hospice care. Regression models were constructed to explain last and average pain scores using data from persons with at least two pain intensity scores. Hospice services were provided to 51,578 persons with at least two pain intensity scores. Of this cohort, 52% were female, 87.5% were Caucasian, and 66.4% had a primary diagnosis of cancer. The mean age at discharge or death was 73.8 years. Patient characteristics accounted for nearly one-third and nearly one-half of the variability in last and average pain scores, respectively. Severe pain on admission and frequency of pain reports were associated with less intense pain. Clinical and demographic characteristics contributed to identifying persons who had severe pain during their hospice admission. These data contribute to understanding pain in persons at the end of life.


Family members' perceived needs for bereavement follow-up.

Journal of pain and symptom management, Jan 2008 vol. 35, no. 1, p. 58-69,
Milberg-Anna, Olsson-Eva-Carin, Jakobsson-Maria, Olsson-Maria, Friedrichsen-Maria.
Author affiliation
Department of Social and Welfare Studies, Linkoeping University, Linkoeping, Sweden. anna.milberg@isv.liu.se.
Abstract
Palliative care does not end with the death of the patient, and many palliative care services offer specific follow-up services for the bereaved. The aims of this study were to quantitate perceived bereavement needs and to qualitatively describe these needs. The study design was cross-sectional and targeted family members three to nine months after the patient's death. Two hundred and forty-eight family members responded (response rate 66%) to a postal questionnaire with Likert-type and open-ended questions. The responses to the open-ended items were analyzed with manifest content analysis, and the quantitative part was analyzed with descriptive statistics. The analysis showed that about half of the family members expressed a need for bereavement follow-up. A majority favored a personal meeting, preferably in their own home, with the staff member who had had the most contact with the patient and the family. The family members wanted to talk about what had happened during the palliative phase (e.g., if the patient had suffered or not), and also about their present situation, their feelings of loneliness, and the future. The follow-up procedure made the family member experience a feeling of being recognized as a person with their own needs and was also valuable with regard to the family members' feelings of guilt. The findings are discussed in relation to narrative theory, meaning- based coping, and the dual process model of coping with bereavement, and designing follow-up procedures.