Improving the Understanding and Managing of the Quality of Life of Patients With Lung Cancer With Electronic Patient-Reported Outcome Measures: Scoping Review.

BACKGROUND: Electronic patient-reported outcome measures (ePROMs) are essential to clinical practice and research. The growth of eHealth technologies has provided unprecedented opportunities to collect information systematically through ePROMs. Although they are widely used in scientific research, more evidence is needed to determine their use and implementation in daily clinical practice. For example, when diagnosed, patients with lung cancer are at an advanced stage of the disease. This entails tremendous burden because of high mortality and losses in the different dimensions of the human being. In this case, monitoring symptoms and other outcomes help improve the patient's quality of life. OBJECTIVE: ePROMs offered unprecedented opportunities to collect information systematically. Our goal was to demonstrate that ePROMs are more useful in controlling patient symptoms, lung cancer, and overall survival than their alternatives, such as nonelectronic PROMs. METHODS: This exploratory review considered articles published between 2017 and 2022 identified through searches of PubMed, Scopus, Cochrane, CINAHL, and PsycINFO. We found 5097 articles; after removing the duplicates, we reduced them to 3315. After reading the summary, we were left with 56. Finally, after applying the exclusion criteria, we reviewed 12. The 5-step framework by Arksey and O'Malley was used to refine the initial search results with the following research questions: Do ePROMs help physician-patient communication? To what extent do they improve decision-making? Are institutions and their digitization policies barriers to or facilitators of this process? and What else is needed for routine implementation? RESULTS: This review included 12 articles. We found that ePROMs are an integrative and facilitative communication tool, highlighting their importance in the relationship between palliative care and medical oncology. ePROMs help assess patient symptoms and functionality more accurately and facilitate clinical decision-making. In addition, it allows for more precise predictions of overall patient survival and the adverse effects of their treatments. The main institutional obstacles are the initial investment, which can be costly, and the data protection policy. However, enablers included better funding through the development of telemedicine, support from institutional leaders to overcome resistance to change, and transparent policies to ensure the safe and secure use of ePROMs. CONCLUSIONS: Routine collection of remote ePROMs is an effective and valuable strategy for providing real-time clinical feedback. In addition, it provides satisfaction to patients and professionals. Optimizing ePROMs in patients with lung cancer leads to a more accurate view of health outcomes and ensures quality patient follow-up. It also allows us to stratify patients based on their morbidity, creating specific follow-ups for their needs. However, data privacy and security are concerns when using ePROMs to ensure compliance with local entities. At least four barriers were identified: cost, complex programming within health systems, safety, and social and health literacy.

Facial edema as an adverse drug reaction to olanzapine in a patient with cancer receiving palliative care.

OBJECTIVE: Atypical neuroleptics such as olanzapine are indicated for the treatment of various psychiatric disorders and have been used in the palliative care setting also for several clinical indications. Peripheral and facial edema are a rare side effect of the treatment with olanzapine. We report a case of an advanced cancer patient cared receiving palliative care who developed severe facial edema after initiating a low dose of olanzapine in monotherapy. METHOD: A patient with advanced cancer who presented with severe facial edema after initiating olanzapine for the treatment of her opioid use disorder. RESULTS: After excluding other differential diagnosis for facial edema, olanzapine was discontinued with complete resolution of the edema. SIGNIFICANCE OF RESULTS: To the best of our knowledge, this is the first case reporting facial edema due to olanzapine treatment in a patient with advanced cancer. Our report will help clinicians recognize the possible role of olanzapine in cases of rapid onset of facial edema, allowing its rapid resolution.

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

OBJECTIVES: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis. METHOD: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes. RESULTS: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes". SIGNIFICANCE OF RESULTS: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.

Repeated filling of elastomeric infuser pumps for home-based subcutaneous medications: a case series.

BACKGROUND: Several medical devices have been developed for continuous subcutaneous drug infusion for home palliative care (HPC), such as elastomeric infuser pumps (EIP). There is no evidence on the repeated filling of EIP for continuous subcutaneous delivery for HPC. AIM: A clinical case series report of terminally-ill patients cared for in HPC, with repeated filling of EIPs for home-based subcutaneous medications. METHODS: A retrospective analysis of each patient's EIP-related entries in an anonymised database regarding: 1) EIP general functioning aspects; 2) clinical aspects: symptom control and local skin complications. Overall and per-patient cost-saving was also calculated. FINDINGS: A total of 10 cases were analysed (four 50-hour EIP and six 30-hour EIP). All EIPs had a mean number of refillings (standard deviation (SD), mode) of 1.6 ((0.5), 2); with 3.2 drugs on average used in each EIP ((1.4), 4). Approximate total mean (SD) usage time for both types of EIP was 87 (29) hours; and all EIP were used, on average (SD), 49 (23) hours more than its labelled duration. All EIPs showed a complete reservoir deflation between refilling. Only one patient had a minor skin complication and no symptom aggravation was observed, except for two cases with mild anxiety and agitation. Cost-saving analysis for the complete case series showed that EIP refillings saved, on average, €24 per-patient and a total of nearly €240, for both types of infuser pumps. CONCLUSION: This preliminary study suggests that refilling is safe and reduces cost. Future research on EIP refilling using controlled and systematic methodologies are warranted.

The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors.

OBJECTIVE: Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. SIGNIFICANCE OF RESULTS: Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

"Truly holistic?" Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients.

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.

Adapting the Portuguese dignity question framework for adolescents: ages 10-18.

OBJECTIVE: Dignity 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). METHOD: Five 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. RESULTS: DT'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 RESULTS: We 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.

Measuring Total Suffering and Will to Live in an Advanced Cancer Patient Using a Patient-Centered Outcome Measure: A Follow-Up Case Study.

Introduction: The concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient. Case Description: A 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores. Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.

Is it useful to ask "Está deprimido?" ("Are you depressed?") to terminally-ill Portuguese patients? Results from outpatient research.

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 patients samples of Portuguese terminally ill is necessary to find more accurate and robust properties of this brief tool.