BACKGROUND:
We described and compared symptom distress and quality of life among persons receiving hospice/palliative care from the perspective of patients and proxies (caregivers and nurses). We hypothesized that 1) proxy respondents would rate symptom (sx) distress higher and quality of life (QOL) lower than would patients, 2) patient and nurse assessments would be highly correlated, and 3) correlations would be higher for physical than for psychological issues.
METHODS:
A prospective cohort study in the Population-based Palliative Care Research Network (PoPCRN), provided data [Condensed Memorial Symptom Assessment Scale (MSAS, range 0-4, higher=more sx distress), McGill Quality of Life Questionnaire (MQOL, range 0-10, 0=bad, 10=good)] at hospice admission, 1 and 2 weeks, monthly, and at death or discharge. English-speaking adult patients (P) receiving care from PoPCRN sites (if able), their caregivers (C) (if available), and nurses (N) participated. We used a multivariate mixed effects model to assess the relationships between the 3 groups.
RESULTS:
86 patients from 10 hospices participated: 53% female, 60% with a cancer diagnosis, 95% non-Hispanic white, mean age 72 (range 33-100). Respondents differed on only 3 of the 10 possible sx and QOL scales/subscales (see table): 1) Nurses rated support-related QOL lower than caregivers or patients, 2) Caregivers rated physical well-being-related QOL lower than nurses or patients, and 3) Nurses rated physical sx distress lower than caregivers or patients. No differences were found for any of the other MQOL (overall, total, existential well-being, psychological, physical sx) or MSAS (global distress index, psychological) scores. Overall, nurse & patient scores appeared to be more highly correlated than were the caregiver & patient. Correlations tended to be lower for physical symptom-related QOL and higher for overall QOL (see table).
CONCLUSION:
Respondent types differed little in their ratings of sx or QOL. Where differences did exist, proxies rated both QOL and sx distress lower than did patients. The assessments of all respondents correlated only moderately across all QOL and sx distress measures. Clinicians should seek the perspectives of all involved parties when seeking to decrease sx distress and maximize QOL at the end of life. From a research perspective, these findings indicate the need to incorporate data from all available respondents when one encounters missing sx or QOL data.
| Respondent Pair | MQOL Support | MQOL Physical Well-being | MSAS Physical SX | Lowest Correlations (scale) | Highest Correlations (scale) |
| N-P | 7.62 vs. 8.55 (p=0.01) | 4.53 vs. 4.54 (p=0.97) | 1.45 vs. 1.71 (p=0.03 | 0.28 (MQOL Physical SX) | 0.61 (MQOL Global) |
| C-P | 8.47 vs. 8.55 (p=0.86) | 2.94 vs. 4.54 (p<0.01) | 1.75 vs. 1.71 (p=0.79 | 0.21 (MQOL Support) | 0.54 (MQOL Global) |
| N-C | 7.62 vs. 8.47 (p=0.02) | 4.53 vs. 2.94 (p<0.01) | 1.45 vs. 1.75 (p=0.03 | 0.14 (MQOL Physical SX) | 0.64 (MQOL Total) |
The abstract above was submitted to the Society of General Internal Medicine Conference, Spring 2003.
SYMPTOM DISTRESS AND QUALITY OF LIFE AT THE END OF LIFE: A COMPARISON OF PATIENT, CAREGIVER AND NURSE ASSESSMENTS, by JS KUTNER, D FAIRCLOUGH1, B BEATY, CT KASSNER, and JF STEINER, University of Colorado Health Sciences Center, Denver, CO.
GENERAL INFORMATION:
The Population-based Palliative Care Research Network (PoPCRN) is pleased to announce that Jean S. Kutner, MD, MSPH, co-director of PoPCRN, was recently awarded two grants, a Robert Wood Johnson Generalist Physician Faculty Scholars Award and a Paul Beeson Physician Faculty Scholars in Aging Research Award. These grants will provide four years of support to study symptoms and symptom management in the hospice setting, with the ultimate goal of gaining the knowledge necessary to decrease symptom distress and improve quality of life for terminally ill individuals. A number of studies are planned for the four year award period: 1) describing symptom incidence, prevalence, severity and distress from the perspective of hospice patients and their caregivers; 2) for selected symptoms, documenting the effectiveness of pharmacologic and non-pharmacologic symptom management strategies; and 3) implementing and documenting a continuous quality improvement approach to decreasing symptom distress. We are excited by this opportunity to directly contribute to improved quality of life for hospice patients. Sites will be contacted in July, 2000 regarding participation. Thank you to each of you who wrote letters in support of these grant applications.