PURPOSE: This study used a comparative descriptive design to compare family caregivers’ and advanced-stage cancer patients’ perceptions of patients’ multidimensional symptom experiences on presence, frequency, severity, and distress. PATIENTS AND METHODS: A convenience sample of 98 dyads, composed of advanced-stage heterogeneous cancer patients and their caregivers, completed the Memorial Symptom Assessment Scale in the home care setting on a one-time basis. This scale is a 32-item Likert-type scale for assessing the presence, frequency, severity, and distress arising from symptoms in cancer patients. RESULTS: There was confirmation of trends previously described in related studies where, for example, caregivers tend to overreport on symptom experiences. However, the degree of absolute difference between patient and caregiver responses was normally around 1 unit (on a theoretical range of 0 to 4 units). Levels of patient-caregiver agreement were better on more concrete questions related to symptom frequency, severity, and distress than on broad questions related to the presence of a symptom. Patients and caregivers achieved better levels of agreement on physical versus psychological symptoms. CONCLUSION: The findings indicated that family caregivers can provide reasonable proxy or complementary reports on patient symptom experiences of frequency, severity, and distress. However, family caregivers have greater difficulty in achieving high levels of accuracy on psychological versus physical symptoms.

Aims: To provide further evidence about the prevalence and correlates of the sense of “self-perceived burden” (SPB) to others, and to examine its association with caregiver reports of burden. Methods: The participants were 65 patients with advanced cancer and their family caregivers. Patients completed measures of SPB and family members completed a caregiver burden scale. Results: SPB was experienced at minimal to mild levels by 35% of patients, and at moderate to extreme levels by another 28%. It was correlated with some physical symptoms, but more frequently with psychological symptoms. The family members of patients who reported that SPB was a significant problem had higher scores on the caregiver burden scale than family members of other patients (p=0.048), although the overall correlation was modest. Conclusions: SPB is a common and distressing concern for many patients receiving palliative care and is associated with a number of other distressing concerns.

Next of kin (NOK) play an integral role in fostering optimal quality of life in symptomatic patients who are coping with cancer in the home setting. Often when patients in advanced stages of cancer are no longer able to meaningfully communicate their illness and symptom needs, healthcare professionals turn to NOK to provide sound estimates of patients' symptom experiences. This overview is based on 37 research studies written between 1987 and 2002 and updates an earlier overview of 13 studies on patient-NOK response comparability. The purpose is to, first, promote a better comprehension of methodologies and statistical techniques commonly employed to measure patterns of response comparability (or levels of agreement) between patient self-reports and NOK estimates on patient quality-of-life experiences of physical or symptom and emotional or psychological well-being. The second aim is to identify conditions where NOK may pose as reasonably accurate judges of patients' health-related quality of life, particularly symptom experiences arising from various diagnoses, including cancer. Third, subsequent to identifying the gaps in current research knowledge and limitations in study designs, recommendations for statistical and methodological techniques are outlined.