Hsien Seow1,2, Daryl Bainbridge1, Deanna Bryant3, Dawn Guthrie4, Sara Urowitz3, Victoria Zwicker3, Denise Marshall5. 1. 1 Department of Oncology, McMaster University , Hamilton, Ontario, Canada . 2. 2 Escarpment Cancer Research Institute , Hamilton, Ontario, Canada . 3. 3 Cancer Care Ontario , Toronto, Ontario, Canada . 4. 4 Departments of Kinesiology and Physical Education and Health Sciences, Wilfrid Laurier University , Waterloo, Ontario, Canada . 5. 5 Department of Family Medicine, McMaster University , Hamilton, Ontario, Canada .
Abstract
OBJECTIVE: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life. METHODS: We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada. RESULTS: In total, 330 surveys were completed (overall response rate of 13%, regional rates ranged from 4% to 83%). There was less than 5% missing data. Most patients received care from multiple settings in the last three months of life, including 60% for which a hospital stay was reported. The overall mean of the 19 FAMCARE-2 items was 1.7 (SD 0.7), with 72% of ratings as 1 very satisfied to 2 satisfied. On VOICES-SF items, 6% of respondents rated "all end-of-life services" as fair or poor, 24% as good, and 70% as excellent or outstanding, with variation depending on care site rated. 13% of caregivers reported that pain management was fair or poor in the last week of life. CONCLUSIONS: This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.
OBJECTIVE: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life. METHODS: We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada. RESULTS: In total, 330 surveys were completed (overall response rate of 13%, regional rates ranged from 4% to 83%). There was less than 5% missing data. Most patients received care from multiple settings in the last three months of life, including 60% for which a hospital stay was reported. The overall mean of the 19 FAMCARE-2 items was 1.7 (SD 0.7), with 72% of ratings as 1 very satisfied to 2 satisfied. On VOICES-SF items, 6% of respondents rated "all end-of-life services" as fair or poor, 24% as good, and 70% as excellent or outstanding, with variation depending on care site rated. 13% of caregivers reported that pain management was fair or poor in the last week of life. CONCLUSIONS: This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.
Authors: Dawn M Guthrie; Nicole Williams; Cheryl Beach; Emma Buzath; Joachim Cohen; Anja Declercq; Kathryn Fisher; Brant E Fries; Donna Goodridge; Kirsten Hermans; John P Hirdes; Hsien Seow; Maria Silveira; Aynharan Sinnarajah; Susan Stevens; Peter Tanuseputro; Deanne Taylor; Christina Vadeboncoeur; Tracy Lyn Wityk Martin Journal: PLoS One Date: 2022-04-07 Impact factor: 3.240