RESUMO
The perception of facilitators and barriers to referral to pediatric palliative care (PPC) is a widely studied phenomenon, with scarce information in Latin America. OBJECTIVE: to adapt a survey on the perception of facilitators and barriers to PPC referral and evaluation. SUBJECTS AND METHOD: electronic survey with cultural adaptation with translation-retrotranslation in pediatricians and pediatric subspecialists of 3 tertiary centers in Santiago. The survey consisted of 4 sections and 51 questions, corresponding to sociodemographic data (including self-perception of spirituality and religiosity), training and clinical practice of the respondent in PPC, and facilitators and barriers to referral to PPC. RESULTS: 146 pediatricians were invited and 78 surveys were obtained (response rate: 53.4%). The median age was 42 years and 11.5 years of professional practice. The majority corresponded to pediatricians without subspecialty training (n = 34; 43.6%). Twenty-three (29.5%) of the participants received PPC training, which was perceived as insufficient in 17 (74%) cases; there were also no differences in PPC training when comparing pediatricians with or without subspecialty training. Ninety-five percent of the respondents agreed with the perceived benefit of early referral to PPC for patients with life-threatening pathologies, regardless of their diagnosis, although only 47.7% stated that they had made a referral to a PPC team. The emotional relationship with the patients and their families was perceived as a barrier by pediatricians in those subspecialists susceptible to PPC compared with those who were not (20% vs. 50%; p = 0.03). CONCLUSION: A significant deficit in PPC training was detected. There were no differences in facilitators and barriers between pediatricians and subspecialties susceptible to PPC. Specialties not accustomed to PPC-susceptible patients may be affected by emotional factors in their decisions.
Assuntos
Cuidados Paliativos , Encaminhamento e Consulta , Humanos , Criança , Adulto , PediatrasRESUMO
CONTEXT: Improving quality of death (QOD) is a key goal in palliative care (PC). To our knowledge, no instruments to measure QOD have been validated in Spanish. OBJECTIVES: The goals of this study were to validate the Spanish version of the quality of dying and death (QODD) questionnaire and to develop and validate a shortened version of this instrument by phone interview. METHODS: We enrolled caregivers (CGs) of consecutive deceased cancer patients who participated in a single PC clinic. CGs were contacted by phone between 4 and 12 weeks after patients' death and completed the Spanish QODD (QODD-ESP). A question assessing quality of life during last week of life was included. A 12-item QODD (QODD-ESP-12) was developed. Reliability, convergent validity, and construct validity were estimated for both versions. RESULTS: About 150 (50%) of 302 CGs completed the QODD-ESP. Patient's mean age (SD) was 67 (14); 71 (47%) were females, and 131 (87%) died at home. CGs' mean age (SD) was 51 (13); 128 (85%) were females. Mean QODD-ESP score was 69 (range 35-96). Kaiser-Meyer-Olkin measure of sampling adequacy was 0.322, not supporting the use of factorial analysis to assess the existence of an underlying construct. Mean QODD-ESP-12 score was 69 (range 31-97). Correlation with last week quality of life was 0.306 (P < 0.01). Confirmatory factorial analysis of QODD-ESP-12 showed that data fitted well Downey's four factors; Chi-square test = 6.32 (degrees of freedom = 60), P = 0.394 comparative fit index = 0.988; Tucker-Lewis Index = 0.987, and root mean square error of approximation = 0.016 (95% CI 0-0.052). CONCLUSION: QODD-ESP-12 is a reliable and valid instrument with good psychometric properties and can be used to assess QOD in a Spanish-speaking cancer PC population by phone interview.
