"Ariadne's Thread": Psycho-educational Empowerment Intervention for Patients with Metastatic Breast Cancer.

"Ariadne's thread" is a psycho-educational intervention designed by the Breast Unit and the Clinical Psychology Unit of an Italian Comprehensive Cancer Center and aims to promote empowerment in patients with metastatic breast cancer. It consists of 8 online meetings led by a psycho-oncologist in which informative sessions by patients' referring physicians alternate with moments of stress management techniques. This study aims to investigate (1) the feasibility of the "Ariadne's thread" pilot intervention and (2) the satisfaction and perceived benefits of the pilot intervention. We used a mixed method approach in which (1) it was detected: the number of acceptance to the single session of the intervention by both patients and professionals, the number of help requests by patients, and the number of change of date requests by professionals; (2) semi-structured interviews were conducted with the professionals who participated in the intervention; (3) 2 focus groups were conducted with patients, and (4) a questionnaire was submitted to each of them. The intervention is sustainable from the perspective of the organization, professionals, and patients. In particular, the patients declared perceiving benefits in many aspects: improved relationships with doctors, acceptance of their illness, learning of a relaxation technique, possibility to look at the world with trust and hope, etc. The questionnaires show an improvement in empowerment and satisfaction as a result of the intervention. "Ariadne's thread" is a psycho-educational intervention that effectively addresses the needs of patients with MBC. It can be applied to other contexts (1) if it has been confirmed that similar needs exist or (2) if it can be modified to accommodate other needs.

Cancer-related fatigue and depression: a monocentric, prospective, cross-sectional study in advanced solid tumors.

BACKGROUND: Cancer-related fatigue (CRF) is common in patients with advanced solid tumors and several risk factors are described. The possible role of depression is reported by clinicians despite the association with CRF being unclear. MATERIAL AND METHODS: In this monocentric, cross-sectional, prospective study we recruited patients with advanced solid tumors who were hospitalized at Fondazione IRCCS Istituto Nazionale dei Tumori of Milan. The primary objective was to assess the correlation between CRF and depression. Secondary objectives were the estimation of CRF and depression prevalence and the identification of associated clinical risk factors. CRF and depression were evaluated through the Functional Assessment of Cancer Therapy-Fatigue subscale and the Zung Self Depression Scale (ZSDS) questionnaires. The Cochran-Armitage trend test was used to demonstrate the primary hypothesis. Univariate and multivariate logistic regression models were used to investigate the impact of clinical variables. RESULTS: A total of 136 patients were enrolled. The primary analysis found a linear correlation (P < 0.0001) between CRF and depression. The prevalence of CRF and of moderate to severe depressive symptoms was 43.5% and 29.2%, respectively. In univariate analysis, patients with poor Eastern Cooperative Oncology Group performance status (ECOG PS), anemia, distress, pain, and receiving oncological treatment were at a significantly higher risk for CRF, whereas poor ECOG PS, pain, and distress were risk factors for depression. In multivariate analysis, high levels of ZSDS were confirmed to be correlated to CRF: odds ratio of 3.86 [95% confidence interval (CI) 0.98-15.20) and 11.20 (95% CI 2.35-53.36) for ZSDS of 50-59 and 60-100, respectively (P value for trend 0.002). Moreover, the ECOG PS score was confirmed to be significantly associated with CRF (OR 7.20; 95% CI 1.73-29.96; P = 0.007). CONCLUSIONS: Our data suggest a strong correlation between CRF and depression in patients with advanced solid tumors. Further investigations are needed to better understand this relationship and if depressive disorder therapeutic strategies could also impact on CRF.

Development of the Functional Assessment of Chronic Illness Therapy - Liver Transplant (FACT-LT) Scale.

Background: This study aims to propose an initial development of the FACT-Liver Transplant (FACT-LT) scale to assess the major physical and emotional concerns of patients before and after Orthotopic Liver transplant (OLT) due to acute and chronic liver failure and hepatocellular carcinoma. Methods: The FACT-LT was developed in two phases. In Phase I, items were generated: 1) through interviews with 10 OLT experts and 15 candidates for or recipients of both oncological and non-oncological OLT which identified relevant topics; 2) from the FACIT item bank. In Phase II, a questionnaire to assess item frequency, applicability, and comprehension was administered to 20 OLT experts and, to assess item difficulty, embarrassment and content irrelevance, to 30 transplant recipients or candidate patients (15 oncological, 15 non-oncological). Results: In Phase I, 44 items were formulated/reviewed, and 30 items were maintained. All the healthcare professionals interviewed rejected the recommendation to develop two different modules for cancer and non-cancer patients. In Phase II, the majority of the experts and patients expressed an overall satisfaction with the questionnaire, indicating that the items were relevant, comprehensible and not embarrassing (range 75% - 99%). The first version of the FACT-LT includes 28 items defining four QOL domains: 5 items relating to Physical Well-Being, 8 to Functional Well-Being, 13 to Emotional Well-Being, and 2 to Social/Family Well-Being. Conclusion: The preliminary results obtained were promising; however further studies are needed, in order to proceed with a FACT-LT validation process.

Re-activating life skills in cancer patients through expressive-creative workshops: A qualitative exploratory study.

BACKGROUND: Cancer strongly impacts on patients' lives, undermining their life skills. This research aimed to explore the perception of efficacy of participants in a series of expressive-creative workshops (ArtLab) designed to reactivate life skills in cancer patients. METHODS: Quotations of two semi-structured focus groups with ten participants in ArtLab (Mean Age = 59; SD = 11.19) enrolled at [Fondazione IRCCS Istituto Nazionale dei Tumori] have been analyzed through a priori (top-down) thematic analysis which allowed us to identify life skills provided by WHO 1948: Emotional, Relational and Cognitive. RESULTS: Thematic analysis showed ArtLab program's effectiveness, especially regarding Emotional and Relational life skills. Cognitive skills, instead, seemed to be only partially expressed. Sub-themes articulation for each life skill has been discussed. CONCLUSION: This study provides encouraging results with respect to the effectiveness of expressive-creative group workshops among cancer patients.

Fear of cancer recurrence in haematological cancer patients: exploring socio-demographic, psychological, existential and disease-related factors.

PURPOSE: This study aims to explore the relation between the dimension of fear of cancer recurrence (FCR) in haematological cancer patients relapse-free for at least 2 years and socio-demographic, related to the disease, psychological and existential factors. METHODS: A sample of 75 haematological cancer patients agreed to participate in the study through a self-reported online questionnaire (51.9% males). A total of 70.1% had a low recurrence risk. The questionnaire included socio-demographic (gender, age, civil status, level of education and number of children), related to the disease (diagnosis, therapeutic line and years since diagnosis), psychological (anxiety and depression), existential (purpose in life; PIL) factors and Fear of Cancer Recurrence Concerns Inventory (FCRI). Simple and multiple linear regressions were conducted for the analyses, and we performed some preliminary analysis on the reliability of the FCRI. FINDINGS: A total of 53.3% of participants showed clinical levels of FCR on the severity dimension, which was higher than found in previous research in other cancer patients. The coping strategies, triggers, severity and psychological distress dimensions showed higher mean values. Women, patients with indolent non-Hodgkin lymphomas, years since diagnosis, anxiety and purpose in life are significantly related to one or more dimensions of FCRI. IMPLICATIONS: It is important that the clinicians have at their disposal multiple possibilities to help patients cope with haematological cancer. If future research will confirm the results of this study, the negative correlation between FCR and PIL can suggest indications for planning interventions based on a salutogenic approach.

Emotive and cognitive processes in cancer patients: linguistic profiles of post-traumatic growth.

Starting from the challenge offered by the authors of the post-traumatic growth (PTG) construct (Tedeschi & Calhoun, ), this paper aims to explore the existence of different linguistic profiles of cognitive and emotional processes in PTG narratives. The autobiographical narratives of 40 cancer patients were analysed for both PTG and linguistic indicators of emotions and cognitive processes. PTG was operationalised as the presence of redemption sequences (McAdams, ). The emotional and cognitive linguistic indicators were analysed by the LIWC program (Pennebaker & Francis, ). All the narratives included PTG (M = 3.55, SD = 1.91). Three clusters of linguistic profiles were retained (60%-79% of variance explained): "disengagement", "assimilative" and "accommodative". These clusters differed significantly by PTG (F = 9.70, p < .000, η2  = .34). Given the limitations of the study, the results highlight the importance of the linguistic approach to a deeper understanding of PTG and to tailored pathways of its promotion.

The psychological impact of breast and ovarian cancer preventive options in BRCA1 and BRCA2 mutation carriers.

This study was performed to describe the impact of preventive options on the psychological condition of BRCA1/BRCA2 carriers. A sample of 52 cancer-affected (C-A) and 27 cancer-unaffected (C-UN) women were enrolled after gene test disclosure (T0). Psychological evaluations were performed at T0 and 15 months later (T1). The surgical options were more likely to be chosen in C-A women (62%), although a consistent proportion of C-UN women (30%) also opt for these preventive measures. At the baseline, both samples had average anxiety and depression scores below the cut-off value, restrained average cancer worry scores and a risk perception consistent with the risk percentage provided during genetic counselling. The longitudinal results indicated no clinically meaningful variations in the anxiety and depression scores in either of the two samples. Statistically significant reductions in cancer-risk perception emerged in women who chose surgery in both C-A and C-UN women. In BRCA1/BRCA2 mutation carriers, surveillance does not influence their initial psychological condition, whereas prophylactic surgery has a significant impact in reducing the perceived risk and worry about getting sick. C-A and C-UN women have to be considered as two separate populations of BRCA mutation carriers requiring personalized approaches to risk management.

End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition.

The aim of the present study is to describe end-of-life preferences of advanced cancer patients willing to talk about death issues. Eighty-eight advanced cancer patients were interviewed through End of Life Preferences Interview (ELPI), a 23-item interview covering a wide range of end-of-life care issues. Most interviewed subjects were home care patients and their median survival after ELPI administration was 69 days. In total, 100% of responders expressed the will to receive some kind of information on the disease process and/or the treatments proposed. Approximately 77% declared to be willing to talk about what it is important at the end of life in case of worsening of their conditions and 31% prefer to be left alone in difficult moments. Approximately 67% choose home as the preferred place of death and 63% think it is preferable to die in a state of unconsciousness induced by drugs. About half of responders declare to believe in any kind of life after death and 40% consider very important to find any meaning at the end of life. ELPI can be a useful instrument to adapt the model of care to the specific needs and values of each patient.

Italian validation of the Purpose In Life (PIL) test and the Seeking Of Noetic Goals (SONG) test in a population of cancer patients.

OBJECTIVE: The first instruments developed to evaluate specific logotherapeutic dimensions were the Purpose In Life (PIL) and the Seeking Of Noetic Goals (SONG) tests, designed to reflect Frankl's concepts of, respectively, meaning in life attainment and will to meaning. This study aims to perform the Italian cultural adaptation and the psychometric validation of the PIL and SONG questionnaires. METHODS: We administered the PIL and SONG, culturally adapted into the Italian language, to 266 cancer patients. The psychometric validation appraised construct validity, internal consistency, test-retest reliability, known-group validity, and convergent validity of the two questionnaires with respect to one another. RESULTS: The factorial analysis indicates that the original single-factor solution can be maintained for both instruments (proportion of variance explained by the first factor 77% and 71% for the PIL and SONG, respectively). The results show excellent internal consistency (Cronbach's alpha of 0.91 for the PIL and 0.90 for the SONG) and test-retest reliability (intraclass correlation coefficient of 0.92 for the PIL and 0.81 for the SONG). As expected, males, believers, patients nearer to the diagnosis, and patients not undergoing psychological therapy have higher PIL and lower SONG scores, while expectations for age were not confirmed. The average level for the PIL was 107.3, while for the SONG, it was 66.1, and a negative correlation (-0.47) between PIL and SONG scores indicates good convergent validity of the two instruments. CONCLUSION: Italian versions of the PIL and SONG are adequate and reliable self-report instruments for evaluating purpose in life and the motivation to find purpose for cancer patient populations.

The Gap between Tobacco Treatment Guidelines, Health Service Organization, and Clinical Practice in Comprehensive Cancer Centres.

Smoking cessation is necessary to reach a higher quality of life, and, for a cancer patient, it represents an important step in improving the outcome of both prognosis and therapy. Being a cancer patient addicted to nicotine may be a critical situation. We conducted a survey to monitor how many comprehensive cancer centres in Italy have an outpatient smoker clinic and which kinds of resources are available. We also inquired about inpatient services offering psychological and pharmacological support for smoking cessation, reduction, or care of acute nicotine withdrawal symptoms. What we have witnessed is a significant gap between guidelines and services. Oncologists and cancer nurses are overscheduled, with insufficient time to engage in discussion on a problem that they do not consider directly related to cancer treatment. Furthermore, smoking habits and limited training in tobacco dependence and treatment act as an important barrier and lead to the undervaluation of smokers' needs.

An information aid for newly diagnosed multiple sclerosis patients improves disease knowledge and satisfaction with care.

BACKGROUND: Patients report information deficits in the period surrounding diagnosis of multiple sclerosis (MS). We assessed the effectiveness of an add-on information aid for newly diagnosed MS patients. METHODS: We randomly assigned 120 newly diagnosed MS patients from five Italian centres to diagnosis disclosure (current practice at the centre) or current practice plus information aid (ISRCTN81072971). The information aid consisted of a personal interview with a physician using a navigable compact disc and a take-home booklet. The primary composite endpoint was score in the highest tertile of MS knowledge and satisfaction with care questionnaires. Other endpoints were safety; treatment adherence; extra contacts/consultations; switching of care centre; and changes in Hospital Anxiety and Depression Scale and Control Preference Scale scores. RESULTS: At 1 month, 30/60 intervention and 8/60 control patients achieved the primary endpoint (odds ratio [OR] 6.5, 95% CI 2.6-16.0; p < 0.001; number needed to treat [NNT] 3). Figures at 6 months were 26/60 intervention and 11/60 control patients (OR 3.4, 95% CI 1.5-7.8; p = 0.04; NNT 4). There were no adverse events. No significant treatment effects were seen on secondary outcomes. CONCLUSION: The information aid was safe and significantly associated with attainment of the primary outcome at 1 and 6 months.

The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients.

There are few studies on patient knowledge in multiple sclerosis (MS), and only two published questionnaires. The objective of this article was to develop and validate the MS Knowledge Questionnaire (MSKQ), a self-assessed instrument for newly diagnosed MS patients. Thirty multiple-choice statements, conceived to test MS knowledge, were produced by a multidisciplinary panel and pre-tested on three MS patients, resulting in an intermediate 26-item version. This was tested on 54 MS patients for internal consistency, content and construct validity (validation sample I). The final (25-item) MSKQ was a primary outcome measure in the SIMS-Trial on an information aid to newly diagnosed MS patients. Postal responses of SIMS-Trial participants to the MSKQ a month after intervention (validation sample II) were analysed. Median MSKQ scores in validation samples I and II were, respectively, 18 (range 9-23) and 17 (range 3-24). Acceptability, internal consistency (Kuder-Richardson-20 formula 0.76) and content validity were good. Educational attainment and receiving the information aid were the main independent predictors of MS knowledge. Other predictors were female sex (positive association) and disease duration (negative association). In conclusion, the MSKQ has good clinimetric properties and is sensitive to an educational intervention. We propose the MSKQ as a brief instrument for clinical practice and research.

Communicating the diagnosis of multiple sclerosis - a qualitative study.

Studies on communicating the diagnosis of multiple sclerosis (MS) are few, and all reveal communication and information deficits. We explored the personal experience of diagnosis communication of people with MS and health professionals, using a qualitative methodology. Data were obtained from two sets of focus group meetings (FGM) with people with MS (total 23; 16 females; age range: 23-70) and one FGMs with health professionals (four neurologists, three psychologists, two nurses). The methods of framework analysis were applied to meeting transcripts to identify key topics and categories. The experience of communicating/receiving an MS diagnosis was highly varied; all patients reported the moment as powerfully evocative and unforgettable. Very poor levels of support and information were sometimes given. Although diagnosis communication had improved in more recent experience, all felt it should be further improved with appropriate setting (privacy, no interruptions, sufficient time), information tailored to the individual, and continuity of care. Such improvements imply a more meaningful patientneurologist relationship, and also structural and organisational changes.

Assessing delirium in cancer patients: the Italian versions of the Delirium Rating Scale and the Memorial Delirium Assessment Scale.

To validate the Italian versions of the Delirium Rating Scale (DRS) and the Memorial Delirium Assessment Scale (MDAS), 105 cancer patients consecutively referred for neurological or psychiatric consultation for mental status change were evaluated using the Confusion Assessment Method (CAM), the DRS, the MDAS, and the Mini-Mental State Examination (MMSE). According to the CAM criteria and clinical examination, 66 patients were delirious, and 39 received diagnoses other than delirium. The DRS and the MDAS scores significantly distinguished delirious from non-delirious patients. The MDAS and the DRS were mutually correlated. When using the proposed cut-off scores for the two scales, the MDAS had higher specificity (94%) but lower sensitivity (68%) than the DRS (sensitivity = 95%, specificity = 61% for DRS cut-off 10; sensitivity = 80%, specificity = 76%, DRS cut-off 12). The MMSE showed high sensitivity (96%) and very low specificity (38%). Exploratory factor analysis of the DRS and the MDAS suggested a three-factor and two-factor structure, respectively. Both instruments in their Italian version proved to be useful for the assessment of delirium among cancer patients. Further research is needed to examine the use of the DRS and the MDAS in other clinical contexts.

Assessment of hospitalised cancer patients' needs by the Needs Evaluation Questionnaire.

BACKGROUND: Cancer disease modifies the order and the nature of needs connected with the state of health. The aim of this study was to evaluate the informative, psychological, social and practical needs of hospitalised cancer patients by means of the Needs Evaluation Questionnaire (NEQ), an instrument designed concisely for the convenience of patients and medical staff. PATIENTS AND METHODS: Different samples of consecutive hospitalised cancer patients were involved in the various phases of designing the instrument: 30 patients for items identification, 101 patients for completeness and acceptability evaluation, 423 patients for construct validity and prevalence of needs; content and reliability analysis were performed on 2 subsamples of, respectively, 60 and 88 of the patients from the last sample. RESULTS: The validation analysis showed rather good reliability, structure validity and internal consistency of the questionnaire. The prevalence analysis showed that the most common needs were: 'more information about my future conditions' (74%); 'more information about my diagnosis' (56%); 'more information about the exams I am undergoing' (52%); 'more explanations on treatments' (51%); 'to have a better dialogue with clinicians' (57%); 'better services from the hospital' (bathrooms, meals, cleaning) (56%). CONCLUSIONS: The NEQ, self-completed by patients, has proven to be a useful clinical tool for obtaining a systematic and undistorted overview of the principal needs with respect to the state of health of patients. This instrument, which can also be administered by persons not belonging to the health care system such as volunteers, and inserted into the patients' hospital charts, could be used by the medical staff to identify the real needs of patients at an early stage.

Assessing psychological distress in cancer patients: validation of a self-administered questionnaire.

BACKGROUND: Screening for psychological distress in cancer patients is important, considering the high prevalence of psychiatric disorders responsive to treatment. The aim of this study is to test the psychometric properties of the Psychological Distress Inventory (PDI), a 13-item self-administered questionnaire developed to measure psychological distress in cancer patients. PATIENTS AND METHODS: The PDI was tested in three samples of 434 cancer patients. In the first sample (n = 102) it was administered with the State Trait Anxiety Inventory (STAI) and with the Eysenck Personality Questionnaire (EPQ). Its validity as a screening method for psychiatric disorders was evaluated through a clinical interview in the second sample (n = 107). The third sample (n = 225) provided information on the ability of the PDI to discriminate among patients in different clinical phases of disease and allowed an estimate of the prevalence of psychiatric disorders in these groups of patients. RESULTS: A 0.88 alpha coefficient was obtained in the whole study sample. The correlations with the STAI scales were > 0.70. A positive correlation with neuroticism (r = 0.59) and a negative correlation with extroversion (r = -0.34) was observed. In the second sample, 67 patients (62.6%) received a psychiatric diagnosis according to the ICD-X criteria. The mean PDI scores were significantly lower for the 40 patients with no psychiatric diagnosis (mean 24.5) as compared with the 49 patients with adjustment disorders (mean 36.4) and with the 12 patients with depressive disorders (mean 40.8). The area under curve, estimated through a Receiver-Operating Characteristics analysis, was 0.88. A cut-off of 29 was associated with a 75% sensitivity and a 85% specificity. In the third sample, the lowest PDI scores were in patients with no evidence of disease (mean 24.7, 95% CL 23.0-26.4) as compared to patients undergoing antineoplastic treatment (mean 30.9, 95% CL 28.9-32.9) and to patients under palliative therapy (mean 36.0, 95% CL 34.0-37.9). The estimated prevalence of patients with psychiatric disorders in these three groups were respectively 5.0, 56.6 and 98.8%. CONCLUSIONS: Our results suggest that the PDI is a reliable and valid tool for measuring psychological distress in cancer patients and to detect psychiatric disorders through a screening procedure.

Genetic counselling: communication and psychosocial aspects.

The results of genetic research have a remarkable role in medicine progress. At the same time the issues of prevention, individual attitudes and behaviour have acquired more importance, not only in relation to the illness but also regarding one's health. For these reasons is important to consider this field of study and intervention as an area to face, not only from the medical point of view but also from ethical and psychological ones. If we agree on the importance of a global approach to this problem, psychosocial support, which is often considered a parallel intervention, becomes a component of genetic counselling: the focal point of the intervention becomes the person, and not only the problem. The literature of the last years is rich of studies that have deepened these themes. Some studies have been analysed and reported but it is not easy to individualise a common patrimony of knowledge. Some aspects as information, communication, risk perception and psychological consequences are presented and discussed in this paper.