Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers

Abstract

Part I of this two-part paper employs a comparative design to compare primary family caregivers' assessments of lung cancer patients' symptom distress with patients' own perceptions of symptom distress in the home setting. Part II describes the results of the qualitative component of this research. A convenience sample of 37 patient-family caregiver dyads completed the McCorkle and Young Symptom Distress Scale (SDS). Family caregivers' global scores were moderately correlated with patients' global scores (r = 0.71; P < 0.001). No significant differences in ratings were found for ten of the 13 symptoms assessed. Therefore, when the patient is unable to provide a self-report of symptom distress, health-care professionals may seriously consider family caregivers' assessments of patients' symptom distress to be reasonable estimates for at least ten of the 13 symptoms on the SDS.

Comfort in the last 2 weeks of life: relationship to accessing palliative care services

“…Studies have examined the accuracy of retrospective reports by proxies, comparing reports of patients prior to death with those of their relatives after death [4,10,22,27,31,33]. In studies comparing concurrent prospective (pre-death) reports by patients and their relatives, family caregivers' overall symptom distress scores have been highly correlated with patients' overall scores [32,35]. Families tend to rate symptoms more severely than patients [34,37,47] and under-report psychological distress [16,34,45].…”

“…Counter-intuitively, even patients may not be "gold standard" reporters of discomfort as they may downplay or emphasise certain symptoms, not want to complain or seek to provide the answers they think are expected [2,35,39]. The "gold standard" of comfort is an amalgam from a number of key sources including patients and people close to them.…”

Family Influences on Heart Failure Self-care and Outcomes

“…37,38 Lack of cooperation and/or concern about causing worry among family members and cardiovascular patients has been shown to lead to inaction when intervention was actually necessary. [38][39][40][41] In other chronic illnesses, discordance between patient and family members has been associated with higher levels of distress within the dyad, 42 overestimation of symptoms such as pain intensity, 43,44 and higher levels of fatigue and anger. 45 Focus group discussion with HF patients and family members regarding symptoms and approaches revealed similar perspectives between patients and family members on the most common symptoms such as dyspnea, fatigue, and emotional distress with the exception of differences in perceptions of cognitive deficits of concentration, attention, and memory.…”

Comprendre les symptômes éprouvés par les sujets atteints du cancer du poumon

“…Pour Lobchuk, Catherine Kiteley, inf., MScInf., travaille au Credit Valley Hospital de Mississauga, Ontario. Margaret I. Fitch, inf., PhD, est Krisjanson, Degner, Blood et Sloan (1997), la fatigue, la toux et la douleur atteignent les scores les plus élevés de la détresse liée aux symptômes. Afin de concevoir des interventions adaptées aux symptômes vécus par les patients atteints d'un cancer du poumon, les infirmières ont besoin de mieux comprendre comment ces symptômes sont perçus par les patients.…”