ObjectiveDignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).MethodFive stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.ResultsDT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.Significance of resultsWe developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.
Objective Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. Method The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). Results Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%). Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). Significance of results There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.
Objectives:Depression is a serious psychological problem in the palliative care setting. Brief screening tools for depression are lacking and need to be brief and acceptable. This study aimed to identify the properties of the single Portuguese question “Está deprimido?” (“Are you depressed?”) to screen for depression.Methods:Retrospective study from 100 patient's medical records identifying the answers on the single Portuguese question for depression “Está deprimido?” (“Are you depressed?”) and the HADS depression sub-scale, using a score ≥11 on the latter as the gold standard for clinically significant depressive symptoms. Sensitivity, specificity, positive predictive and negative values were calculated.Results:Response rate for the single Portuguese question for depression was 100%. Prevalence of depression symptoms (HADS-d ≥ 11) was 43%. To the question “Está deprimido?” 60 patients responded “yes.” Sixteen patients who replied “no” to the single question had clinically significant depressive symptoms based on the HADS depression sub-scale. The single tool had 65.2% sensitivity, 49.2% specificity and 50.0% and 64.4% of positive predictive and negative values, respectively.Significance of results:In this first preliminary retrospective Portuguese study, the single question for depression has shown poor screening properties. Future research in larger and mixed patientś samples of Portuguese terminally ill is necessary to find more accurate and robust properties of this brief tool.
HEMOGLOBINOPATHIES IN PORTUGAL AND THE ROLE OF THE FAMILY PHYSICIAN Hemoglobinopathies are among the most common inherited diseases. Early diagnosis can reduce morbidity and mortality with prompt implementation of preventive and therapeutic measures. The family physician can perform screening tests for hemoglobinopathies to help achieve this. This article reviews the clinical and epidemiological features of the major hemoglobinopathies. Based on these characteristics, an approach is proposed for primary health care services to identify and manage the complications related to these conditions. In order to promote critical reflection on this topic, we have collected the literature on the epidemiology of these conditions in Portugal. There is only one Portuguese guideline on hemoglobinopathies. This was published in 2004 but there have been no epidemiological studies published in Portugal since the 1980s. Given the patterns of external and internal migration of the population since that time, health professionals should reflect on the need for targeted screening for hemoglobinopathies in the risk areas identified previously. We conclude that is urgent to sensitize and train family physician to address these conditions. A new study of the national epidemiology of hemoglobinopathies and possible regional variations is necessary in order to make decisions based on scientific evidence and focused on the specific needs of the population.
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