Questionnaires About the End of Life for Cancer Patients - Is the Response Burden Acceptable?
J Pain Symptom Manage
; 67(3): 233-240, 2024 Mar.
Article
em En
| MEDLINE
| ID: mdl-38016508
ABSTRACT
CONTEXT Research about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. OBJECTIVES:
To assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables.METHODS:
In a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared.RESULTS:
A total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = -0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported.CONCLUSION:
The reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants' benefits without compromising the research quality should further influence study designs in this field.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Neoplasias
Limite:
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article