RESUMO
BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.
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Qualidade de Vida , Doenças Reumáticas , Humanos , Masculino , Feminino , Doenças Reumáticas/psicologia , Doenças Reumáticas/epidemiologia , Estudos Transversais , Pessoa de Meia-Idade , México/epidemiologia , Adulto , Pessoalidade , Idoso , Medidas de Resultados Relatados pelo Paciente , Angústia Psicológica , Comorbidade , Índice de Gravidade de Doença , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologiaRESUMO
OBJECTIVES: To analyze the effects of Dignity Therapy (DT) on the physical, existential, and psychosocial symptoms of individuals with amyotrophic lateral sclerosis (ALS). METHODS: This is a mixed-methods case study research that used the concurrent triangulation strategy to analyze the effects of DT on 3 individuals with ALS. Data collection included 3 instances of administering validated scales to assess multiple physical symptoms, anxiety, depression, spiritual well-being, and the Patient Dignity Inventory (PDI), followed by the implementation of DT and a semi-structured interview. RESULTS: The scale results indicate that DT led to an improvement in the assessment of physical, social, emotional, spiritual, and existential symptoms according to the score results. It is worth noting that the patient with a recent diagnosis showed higher scores for anxiety and depression after DT. Regarding the PDI, the scores indicate improvements in the sense of dignity in all 3 cases, which aligns with the positive verbal reports after the implementation of DT. SIGNIFICANCE OF RESULTS: This study allowed us to analyze the effects of DT on the physical, existential, and psychosocial symptoms of individuals with ALS, suggesting the potential benefits of this approach for this group of patients. Participants reported positive effects regarding pain and fatigue, could reflect on their life trajectories, and regained their value and meaning.
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Esclerose Lateral Amiotrófica , Humanos , Esclerose Lateral Amiotrófica/psicologia , Esclerose Lateral Amiotrófica/complicações , Esclerose Lateral Amiotrófica/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Pesquisa Qualitativa , Respeito , Pessoalidade , Inquéritos e Questionários , Qualidade de Vida/psicologia , Terapia da DignidadeRESUMO
INTRODUCTION: Dignity has rarely been explored in patients with rheumatic diseases (RMDs), which contrasts with patients´ observations that dignity is a relevant area for research focus. The study's primary objective was to adapt and validate the Mexican version of the Patient Dignity Inventory (PDI-Mx) in patients with RMDs, and to estimate the proportion of patients with distress related to perceived dignity (DPD) assessed with the PDI-Mx. METHODS: This cross-sectional study was developed in 2 phases. Phase 1 consisted of pilot testing and questionnaire feasibility (n = 50 patients), PDI-Mx content validity (experts' agreement), construct validity (exploratory factor analysis), discriminant validity (Heterotrait-Monotrait correlations' rate [HTMT]), criterion validity (Spearman correlations) and PDI-Mx reliability with internal consistency (Cronbach's alpha) and test-retest (intra-class correlation coefficients [ICC]) in 220 additional outpatients (among whom 30 underwent test-retest). Phase 2 consisted of quantifying DPD (PDI-Mx cut-off ≥54.4) in 290 outpatients with RMDs. RESULTS: Overall, patients were representative of typical outpatients with RMDs from a National tertiary care level center. The 25-item PDI-Mx was found feasible, valid (experts' agreement ≥82%; a 4-factor structure accounted for 68.7% of the total variance; HTMT = 0.608; the strength of the correlations was moderate to high between the PDI-Mx, the Depression, Anxiety, and Stress scale dimensions scores, and the Health Assessment Questionnaire Disability Index score) and reliable (Cronbach's É = 0.962, ICC = 0.939 [95%CI = 0.913-0.961]). DPD was present in 78 patients (26.9%). CONCLUSIONS: The PDI-Mx questionnaire showed good psychometric properties for assessing DPD in our population. Perceived dignity in patients with RMDs might be an unrecognized source of emotional distress.
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Neoplasias , Angústia Psicológica , Doenças Reumáticas , Humanos , Respeito , Reprodutibilidade dos Testes , Estudos Transversais , Neoplasias/psicologia , Psicometria , Inquéritos e Questionários , Pacientes AmbulatoriaisRESUMO
OBJECTIVES: Dignity therapy (DT) was developed to help patients at their end of life to reframe and give meaning to their illness process. The DT question protocol focuses on personhood and important aspects of the individual's life. This study aimed to translate and culturally adapt the Dignity Therapy Question Protocol (DTQP) to Brazilian Portuguese. METHODS: This was a descriptive and methodological study, and cross-cultural adaptation process comprised 4 stages: (1) translation and synthesis of English original version protocol into Brazilian Portuguese, (2) back translation, (3) experts committee, and (4) pretest. RESULTS: The Portuguese version of the DTQP - Protocolo de Perguntas sobre Terapia da Dignidade - demonstrated a content validity index of 1 for all equivalences. The initial sample consisted of 41 participants (9 [21.9%] refused to participate and 1 [2.43%] dropped out). The pretest was applied to 30 (73.1%) participants, 15 of them were female and the mean age was 53.4 years. The final version consisted of 10 questions that were approved by the original authors who affirmed that the DTQP Brazilian Portuguese version maintained the original English characteristics. SIGNIFICANCE OF RESULTS: The Brazilian cultural adaptation of the DTQP was well understood by patients. It will be very useful in palliative care clinical practice for patients nearing end of life. The adapted version to Brazilian Portuguese will facilitate future studies using the DTQP.
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Comparação Transcultural , Respeito , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Brasil , Inquéritos e Questionários , Traduções , Morte , Reprodutibilidade dos TestesRESUMO
Lung cancer (LC) is the most frequent and deadly neoplasm in the world, and patients have shown a tendency to have more emotional distress than other cancer populations. Dignity Therapy (DT) is a brief intervention aimed to improve emotional well-being in patients facing life-threatening illness. OBJECTIVE: To analyze the effect of DT on anxiety, depression, hopelessness, emotional distress, dignity-related distress, and quality of life (QoL) in a group of Mexican patients with stage IV LC undergoing active medical treatment with baseline emotional distress. METHOD: In this preliminary pretest-posttest study, patients received three sessions of DT and were evaluated with the HADS, Distress Thermometer, Patient Dignity Inventory, single-item questions, and QLQ-30. RESULTS: In total, 24 out of 29 patients completed the intervention. Statistically significant improvements were found in anxiety, depression, emotional distress, hopelessness, and dignity-related distress with large effect sizes. Patients reported that DT helped them, increased their meaning and purpose in life, their sense of dignity, and their will to live, while it decreased their suffering. No changes were found in QoL. SIGNIFICANCE OF RESULTS: DT was well accepted and effective in improving the emotional symptoms of LC patients with distress that were undergoing medical treatment. Although more research is warranted to confirm these results, this suggests that DT can be used in the context of Latin-American patients.
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Neoplasias Pulmonares , Neoplasias , Angústia Psicológica , Ansiedade/diagnóstico , Ansiedade/etiologia , Ansiedade/terapia , Depressão/etiologia , Humanos , Neoplasias Pulmonares/complicações , Neoplasias Pulmonares/terapia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Respeito , Estresse Psicológico/diagnóstico , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Inquéritos e QuestionáriosRESUMO
Introduction: The Patient Dignity Inventory (PDI) is a reliable screening instrument for a variety of problems (physical, existential, and social) that affect the dignity of patients during their end of life. The PDI has been translated into several different languages and has been validated in different settings. As such, it is important to validate the instrument in patients with cancer in Mexico to assess dignity in this population. The aim of this study was to translate and validate the Spanish version of the PDI in Mexican patients with cancer. Methods: This is a cross-sectional study that included patients with cancer, both those enrolled and not enrolled in palliative care, at the Instituto Nacional de Cancerología in Mexico City from September 2018 to August 2019. A translation and back translation were performed to obtain the Mexican version of the PDI (PDI-Mx) instrument. Patients completed the PDI-Mx, the Hospital Anxiety and Depression Scale (HADS), and functional scales (Eastern Cooperative Oncology Group [ECOG] and Karnofsky). Psychometric properties were evaluated by determining internal consistency, exploratory and confirmatory factor analysis (CFA), and concurrent validity with the HADS. Results: We included 290 participants with cancer (145 in palliative care and 145 not enrolled in palliative care). The Cronbach's alpha of the PDI-Mx was 0.95. There was a significant correlation with the HADS (rs = 0.757, p < 0.0001). The factor analysis showed four factors that explain 64.7% of the model. The CFA presented adequate indicators, which show the adjustment of the structure that indicates a balanced and parsimonious model. Conclusions: The Mexican version of the PDI shows adequate psychometric properties in patients with cancer. We suggest the use of PDI-Mx in clinical care and research. The study was approved by the Institutional Review Board and Ethics Committee with numbers (016/063/CPI) and (CEI/1115/16) respectively.