Eliciting individual preferences about death: development of the End-of-Life Preferences Interview.

The capability to make decisions about one's own dying and death is commonly considered a necessary component of a good death, but difficulties in communicating about imminent death have been documented. This paper attempts to describe the process of constructing an instrument to elicit individual preferences concerning dying, while respecting the patient's awareness, and to verify its applicability in a palliative care setting. The development of the End-of-Life Preferences Interview (ELPI) was performed through (a) a literature search aimed at identifying relevant issues; (b) examination by a panel of experts in the field of palliative care of the items generated; and (c) pretesting of feasibility on all eligible consecutive patients referred to three centers of palliative care during a two-month period. The final version of the ELPI consisted of two parts: The first level explores preferences about issues regarding the caregiving process, and the second level focuses on preparation for death. Each of the two parts is introduced by key questions aimed at allowing the patient to decide whether and when to stop exploring such sensitive matters. Among the 49 eligible patients (41%), the interview was proposed to only 13 of them (27%), and only one of them refused. The reasons for such a low compliance of physicians in proposing the ELPI were evaluated by a semi-structured interview and are herein discussed. The use of the ELPI in clinical practice can favor the passage to a greater consideration of the self-determination of the patient at the end of life, with due consideration of his or her cultural and emotional needs.

Predicting survival in terminal cancer patients: clinical observation or quality-of-life evaluation?

INTRODUCTION: This study compares the relative prognostic power of clinical variables and quality-of-life (QoL) measures in a population of terminal cancer patients. METHODS: A prospective cohort study in 58 Italian Palliative Care Units. Of the 601 randomly selected terminal cancer patients, 574 were followed until death in order to compare clinical and QoL variables (using the Therapy Impact Questionnaire (TIQ) as predictors of survival, and assess whether their combined implementation makes prediction more accurate. RESULTS: The clinical variables most strongly associated with survival were dyspnoea, cachexia, Katz's ADL, oliguria, dysphagia, dehydration, liver and acute kidney failure and delirium (hazard ratios (HR) ranging from 2.10 to 3.01). Only the first four kept their strength once introduced in the Cox model (HRs ranging from 1.95 to 2.22). In the TIQ primary scale the strongest predictors were physical wellbeing, fatigue, functional status and cognitive status (HRs ranging from 1.42 to 1.71), but only fatigue showed an independent prognostic relevance (90% of selection). In the TIQ global scales, the Physical Symptom Index showed a stronger association with survival (HR 1.71) than the Therapy Impact Index (HR 1.47). The former marginally improved the prognostic power of the model when added to clinical variables. Internal validation confirmed that the results were not spurious. CONCLUSIONS: In terminal cancer patients, clinical variables are better predictors of survival than QoL. The large residual variability not accounted for by the model (approximately 70%) suggests that survival is also influenced by factors unlikely to be identified in a survey.

A Wireless Health Outcomes Monitoring System (WHOMS): development and field testing with cancer patients using mobile phones.

BACKGROUND: Health-Related Quality of Life assessment is widely used in clinical research, but rarely in clinical practice. Barriers including practical difficulties administering printed questionnaires have limited their use. Telehealth technology could reduce these barriers and encourage better doctor-patient interaction regarding patient symptoms and quality-of-life monitoring. The aim of this study was to develop a new system for transmitting patients' self-reported outcomes using mobile phones or the internet, and to test whether patients can and will use the system via a mobile phone. METHODS: We have developed a prototype of a Wireless Health Outcomes Monitoring System, which allows structured questionnaires to be sent to the patient by their medical management team. The patients' answers are directly sent to an authorised website immediately accessible by the medical team, and are displayed in a graphic format that highlights the patient's state of health. In the present study, 97 cancer inpatients were asked to complete a ten-item questionnaire. The questionnaire was delivered by display on a mobile phone, and was answered by the patients using the mobile phone keypad. RESULTS: Of the 97 patients, 56 (58%) attempted the questionnaire, and all of these 56 completed it. Only 6% of the total number of questions were left unanswered by patients. Forty-one (42%) patients refused to participate, mostly due to their lack of familiarity with mobile phone use. Compared with those who completed the questionnaire, patients who refused to participate were older, had fewer years of education and were less familiar with new communications technology (mobile phone calls, mobile phone SMS, internet, email). CONCLUSION: More than half of the patients self-completed the questionnaire using the mobile phone. This proportion may increase with the use of multichannel communications which can be incorporated into the system. The proportion may also increase if the patient's partner and/or family were able to assist the patient with using the technology. These preliminary results encourage further studies to identify specific diseases or circumstances where this system could be useful in patients' distance monitoring. Such a system is likely to detect patient suffering earlier, and to activate a well-timed intervention.

Cancer patients' needs during hospitalisation: a quantitative and qualitative study.

BACKGROUND: The evaluation of cancer patients needs, especially during that delicate period when they are hospitalized, allows the identification of those areas of care that require to be improved. Aims of the study were to evaluate the needs in cancer inpatients and to improve the understanding of the meanings of the needs expressed. METHODS: The study was conducted during a "sample day", with all the cancer patients involved having been hospitalized at the Istituto Nazionale Tumori of Milan (INT) for at least 48 hours beforehand. The study was carried out using quantitative and qualitative methodologies. The quantitative part of the study consisted in making use of the Needs Evaluation Questionnaire (NEQ), a standardized questionnaire administered by the INT Psychology Unit members, supported by a group of volunteers from the Milan section of the Italian League Against Cancer. The aim of the qualitative part of the study, by semi-structured interviews conducted with a small sample of 8 hospitalized patients, was to improve our understanding of the meanings, implications of the needs directly described from the point of view of the patients. Such an approach determines the reasons and conditions of the dissatisfaction in the patient, and provides additional information for the planning of improvement interventions. RESULTS: Of the 224 eligible patients, 182 (81%) completed the questionnaire. Four of the top five needs expressed by 40% or more of the responders concerned information needs (diagnosis, future conditions, dialogue with doctors, economic-insurance solutions related to the disease). Only one of the 5 was concerned with improved "hotel" services (bathrooms, meals, cleanliness). Qualitative analysis showed that the most expressed need (to receive more information on their future conditions) has the meaning to know how their future life will be affected more than to know his/her actual prognosis. CONCLUSIONS: Some of the needs which emerged from this investigation could be immediately satisfied (the need for psychological support, the need for economic aid, the need for spiritual support), while others will have to be faced in the longer term; for example, the presence of a high percentage of needs in patient-physician relationships and/or information-communication issues, could be resolved by setting up structured introductory training courses for all clinicians in the institution. On the other hand, the needs related to the living infrastructure (bathrooms, meals, etc.) could encourage the Institution to improve its services.

Candidates for liver transplantation for cancer: physical, psychological, and social conditions.

BACKGROUND: There is little knowledge of the psychological and social conditions of candidates for liver transplantation and the meaning that these patients attribute to those conditions. METHODS: The research has been conducted with quantitative and qualitative methods. For the quantitative study, 80 patients were assessed with four evaluation instruments: the Interdisciplinary Group for Cancer Care Evaluation in Italy (GIVIO) questionnaire for quality of life, the Needs Evaluation Questionnaire (NEQ) for psychosocial needs, the Minnesota Multiphasic Personality Inventory (MMPI) personality test, and a questionnaire for the family's reactions to the illness. The qualitative evaluation was conducted to better understand the meaning of the transplantation as expressed by the patients, the integration of the new organ, and the symbolic relationship with the donor with particular attention to the different levels of patients' awareness. RESULTS: The quantitative evaluation showed a good level of quality of life assessed by GIVIO and a low prevalence in the personality disorder scales detected by the MMPI. The patients' needs assessed by NEQ showed a high need of information about the future conditions (77%) followed by the need for more explanation of examinations (49%) and treatments (50%). The qualitative study identified and analyzed two opposite groups of five patients each: those who did not recognize and did not express any emotional experience and those who recognized and expressed a particularly intense emotional experience. CONCLUSION: The psychosocial condition of transplant candidates with liver cancer is characterized by an impact that is more psychological than physical. The qualitative analysis performed allows the hypothesis that the patient's level of awareness is an important indicator to predict the type of adaptation after transplantation.

Semantic descriptors of pain.

Eighty-five patients suffering from advanced cancer pain were asked to attribute a 'definite value' to 5 key words describing pain by rating them on a visual analogue scale (VAS). The score which the patient attributed to each key word was then correlated with 9 variables obtained through patient monitoring files (sex, age, educational background, financial situation, integrated pain score, number of concomitant symptoms, hours of sleep and standing, performance status). The visual analogue rating of pain description was not related to the variables examined. However, important correlations were found: the higher the degree of pain, the higher the concomitant symptoms, and the greater reduction in hours of sleep and standing.