RESUMEN
OBJECTIVES: Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools. METHODS: The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool. RESULTS: Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified "family relationships," "global pain," and "family roles and accomplishments" as being of most importance to patients. SIGNIFICANCE OF RESULTS: The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient-caregiver and patient-HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.
RESUMEN
BACKGROUND: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. METHODS: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. RESULTS: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60-80 years old). The interviewed elderly strongly felt that the ESEU's summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU´s summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 "strongly disagree"-7 "strongly agree". According to the experts' evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. CONCLUSIONS: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.