Silvia Di Leo

Psychological and Symptom Distress In Terminal Cancer Patients with Met and Unmet Needs

This study identified the needs of terminal cancer patients, investigated the factors associated with unmet needs, and assessed psychological and symptom distress associated with unsolved needs. Ninety-four patients were randomly selected from 324 patients admitted for palliative care in 13 Italian centers. Two self-administered questionnaires (the Symptom Distress Scale and the Psychological Distress Inventory) were administered to all the patients. Patients needs were identified using a semi-structured interview, aimed at exploring five areas: physiological needs, safety needs, love and belonging needs, self-esteem needs, self-fulfillment needs. A content analysis of the answers defined 11 needs, and identified patients with unmet needs. The most frequent unmet needs were symptom control (62.8%), occupational functioning (62.1%), and emotional support (51.7%). The less frequently reported needs were those related to personal care (14.6%), financial support (14.1%), and emotional closeness (13.8%). Low functional state was significantly associated with a high proportion of patients with unmet needs of personal care, information, communication, occupational functioning, and emotional closeness. Patients with unmet needs showed significantly higher psychological and symptom distress for most needs. This study provides some suggestions about the concerns that should be carefully considered during the late stage of cancer.

Expectations about and impact of the Liverpool Care Pathway for the dying patient in an Italian hospital

This study is aimed at exploring the expectations about and the impact on healthcare staff of the Liverpool Care Pathway for the dying patient (LCP) in an Italian hospital. Qualitative information was derived from four focus group (FG) meetings that were carried out separately by profession and scheduled before the beginning and after the end of the implementation process of the Italian version of LCP for hospitals (LCP-I). Interview topics concerned end-of-life care related problems and expectations about the impact of the LCP-I programme. Tape recordings of the FGs were transcribed verbatim, and transcripts analysed independently by two research psychologists using thematic analysis. Five major topics were identified: managing pain and discontinuing inappropriate treatments, communicating with patients, communicating with relatives, communicating between professionals and practical issues. As compared with those reported in the initial FGs, responses from the final FGs highlighted that physicians felt more confident with pain management and with discontinuing inappropriate treatment, and were more inclined to recognize the value of the nurses’ work. Nurses underlined advantages in using pro re nata medication, but stressed lack of personnel and time as obstacles in consistent improvement of end-of-life care. All participants seemed to acquire greater awareness of their difficulties in communication and, paradoxically, became more uncertain of their ability to liaise with dying patients and their families. LCP-I implementation may improve both knowledge about physical symptom management and professional awareness of the problems related to emotional and informative support in end-of-life care.

The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before-after cluster phase II trial of outcomes reported by family members

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain. Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital. Design: Uncontrolled before–after intervention cluster trial. Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting). Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed. Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

End‐of‐life care in Italy: personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC)

Objective: This study aims at describing the emotional and practical experience of a representative sample of Italian non‐professional caregivers when caring for a terminally ill family member and is part of the ‘Italian Survey of the Dying of Cancer’, which involved 2000 adult cancer deaths representative of the whole country.

Methodological issues in a before-after study design to evaluate the Liverpool Care Pathway for the Dying Patientin hospital:

Background: In 2006, as the first step of a 3-year research programme to assess the Liverpool Care Pathway for the Dying Patient (LCP) in hospital, the original LCP documentation was translated and piloted in four Italian hospital wards in Genoa. The primary aim was to evaluate the feasibility of LCP implementation in the Italian context. The secondary aim of the study was to evaluate the effectiveness of the LCP with an uncontrolled before–after design. Aim: The aim of the study was to discuss and critically evaluate the methodological issues in designing and interpreting the results of the before–after study design. Setting/participants: All cancer deaths which occurred in four hospital wards (three general medicine and one respiratory disease) 4 months before and 4 months after LCP implementation (2 months for the respiratory disease ward) were registered. Caregivers were interviewed after the patient’s death using the Toolkit After-Death Bereaved Family Member Interview. Results: A total of 111 cancer deaths were identified (63 before and 48 after) and 79 caregivers (71.2%) were interviewed (46 before and 33 after). The analyses on number and characteristics of the patients, interviewed caregivers, compliance and modality of assessment showed significant differences before and after. A remarkable internal correlation coefficient for all of the Toolkit scales within the four hospital wards was observed. Conclusions: This analysis confirms the high risk of selection and information bias inherent the uncontrolled before– after study design. The high internal correlation strongly suggests that clustering should be taken into account in this kind of study.

Evaluation of a screening programme for psychological distress in cancer survivors.

PurposeThis study is aimed at evaluating the feasibility of a screening procedure for psychological distress in cancer survivors.MethodsConsecutive series of 339 cancer patients from three centres were requested to fill in two questionnaires measuring psychological distress (PDI) and social support (MOSS). Psychological intervention was offered to patients with significant degree of distress.ResultsMost patients accepted to be screened (72.0%; n = 244), and a subgroup (16.0%) showed high psychological distress. A higher ratio of distressed patients was observed among those with lower social support (P = 0.017). A significant (P < 0.01) negative correlation between psychological distress and social support was observed. A psychological intervention was offered to patients with high psychological distress, but only 15.6% completed it.ConclusionsResults from this study provide both some insights into the characteristics of psychological distress and some input on issues that may arise when implementing a screening procedure for psychological distress in cancer survivors. Further research is needed to assess both the clinical significance of distress and the most appropriate tools to carry out screening procedures within the target population.

Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients

BackgroundThere is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care.MethodsPhase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24–48 h after T1 to assess its reliability (test re-test analysis).ResultsPhase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5–0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16–0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time.ConclusionsBoth the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.

‘Less ticking the boxes, more providing support’: A qualitative study on health professionals’ concerns towards the Liverpool Care of the Dying Pathway

Background: Despite being widely used, research into the effectiveness of the Liverpool Care of the Dying Pathway (LCP) and associated cases of malpractice does not match dissemination. No study exists focusing on concerns voiced by professionals. Aim: To explore the views of professionals who, during the hospital implementation of the Italian version of the Liverpool Care of the Dying Pathway (LCP-I), voiced or showed concerns towards it. Design: A qualitative study nested within the LCP-I randomized cluster trial, with semi-structured interviews analysed using thematic analysis. Setting and participants: Six nurses and five physicians from six out of the eight hospital wards who completed the LCP-I implementation were interviewed. Eligibility criteria were having taken part in all steps of the LCP-I Programme, voiced or somehow shown concerns, or failed to fully engage with the implementation process. Results: A total of 12 categories were identified, referring to four topics: the Implementation Programme, the LCP-I clinical documentation, the hospital environment and the educational and professional background of hospital healthcare staff. Issues raised by participants concerned both ‘real’ characteristics of the LCP-I and a misinterpretation of the LCP-I approach and clinical documentation. Furthermore, difficulties were reported which were not linked to the Programme but rather to end-of-life care. Conclusion: This study provides insights into the experience of professionals with negative opinions of or concerns with the LCP-I. A more comprehensive approach to professional training in palliative care is needed and may envisage the development of new interventions aimed at improving the quality of care throughout the illness trajectory.

End-of-life care: pathways and evidence.

Purpose of reviewStudies in different countries and settings of care have reported the quality of care for the dying patients as suboptimal. Care pathways have been developed with the aim of ensuring that dying patients and their family members received by health professionals the most appropriate care. This review presents and discusses the evidence supporting the effectiveness of the end-of-life care pathways. Recent findingsTwo Cochrane systematic reviews updated at June 2013 did not identify studies that met minimal criteria for inclusion. One randomized cluster trial aimed at assessing the effectiveness of the Liverpool Care Pathway in hospitalized cancer patients was subsequently published. The trial did not find a significant difference in the overall quality of care, the primary end-point, but two out of nine secondary outcomes – respect, dignity, and kindness, and control of breathlessness showed significant improvements. Afterwards, we did not find any other potentially eligible published study. SummaryThe overall amount of evidence supporting the dissemination of end-of-life care pathways is rather poor. One negative randomized trial suggests the pathways have the potential to reduce the gap between hospital and hospices. Further research is needed to understand the potential benefit of end-of-life care pathways.

The Ligurian High-School Educational Project on Palliative Care Development and Piloting of a School-Based Intervention on Bereavement and Severe Illness

This study was aimed at developing and piloting a school-based intervention on severe illness-induced bereavement through a project focused on spreading knowledge of palliative care among high school students (phases 0-II Medical Research Council Framework). The intervention entailed the screening of a topic-related movie and a classroom meeting. Eight classes from 2 high schools participated, and a before–after evaluation was used to assess intervention feasibility and impact. Valid questionnaires, including 2 open-ended questions focusing on bereavement and strategies for coping with loss, were filled in by 89% (before) and 84% (after) of the 159 students. In the after evaluation, content analysis on the “strategies” question showed that answers concerning closeness and sharing were reported more frequently. Positive feedback was collected as regards the overall experience.