Palliative Medicine

Introduction: There is no universally accepted measurement scale to assess breathlessness in adult palliative care patients. This significantly hampers clinical practice and research into effective interventions. The aim is to systematically identify and appraise breathlessness measurement scales, which are validated for use in palliative care or which show potential for use. Methods: We undertook systematic searches of electronic databases (Cochrane databases 2005, MEDLINE 1966-2005, OLDMEDLINE 1950-1965, EMBASE 1980-2005, PsycINFO 1872-2005, AMED 1985-2005, CINAHL 1982-2005, SIGLE 1980-2005) with follow-up searches (reference lists of included papers, hand-searches of relevant journals). The basic search strategy was 'breathlessness (etc.) AND measurement (scales, validation etc.) AND palliative care/cardiac failure/respiratory disease/ neoplasm etc.', modified for each database, without language restriction. Patient-based scales with evaluations of at least two psychometric characteristics were included. Exercise-based tests were excluded. Scales were appraised with particular emphasis on construct validity and responsiveness. Results: We identified 29 scales: six to measure breathlessness severity, four to assess breathlessness descriptions, and 19 to measure functional impact of breathlessness. Severity: The Numeric Rating Scale (NRS) and modified Borg Scale have been evaluated in COPD (the NRS has also been evaluated in cancer). Both require further assessment of responsiveness and test-retest reliability over time intervals relevant to palliative care. Visual Analogue Scales have also been evaluated, but require larger sample sizes than NRS for evidence of intervention effectiveness. Descriptions: The Japanese Cancer Dyspnoea Scale (CDS) has been evaluated in patients with cancer, but requires further assessment of construct validity and responsiveness. Functional impact: The Chronic Respiratory Questionnaire dyspnoea subscale (CRQ-D) has been evaluated in chronic lung diseases and heart failure; the MND Respiratory Scale is similar. CRQ-D has face and construct validity, test-retest reliability and responsiveness, and shows promise for palliative care. Conclusion: The NRS, modified Borg, CRQ-D and CDS appear most suitable for use in palliative care, but further evaluation is required before adopting any scale as standard. This review has been registered with the Cochrane collaboration and will be published and updated as a Cochrane review. Palliative Medicine 2007; 21: 177-191

Objectives: The primary objective in this study is to determine the sensitivity and specificity of a two-item screening interview for depression versus the formal psychiatric interview, in the setting of a specialist palliative in-patient unit so that we may identify those individuals suffering from depressive disorder and therefore optimise their management in this often-complex population. Methods: A prospective sample of consecutive admissions (n = 167) consented to partake in the study, and the screening interview was asked separately to the formal psychiatric interview. Results: The two-item questionnaire, achieved a sensitivity of 90.7% (95% CI 76.9—97.0) but a lower specificity of 67.7% (95% CI 58.7—75.7). The false positive rate was 32.3% (95% CI 24.3—41.3), but the false negative rate was found to be a low 9.3% (95% CI 3.0—23.1). A subgroup analysis of individuals with a past experience of depressive illness, (n = 95), revealed that a significant number screened positive for depression by the screening test, 55.2% (16/29) compared to those with no background history of depression, 33.3% (22/66) (P = 0.045). Conclusion: The high sensitivity and low false negative rate of the two-question screening tool will aid health professionals in identifying depression in the in-patient specialist palliative care unit. Individuals, who admit to a previous experience of depressive illness, are more likely to respond positively to the two-item questionnaire than those who report no prior history of depressive illness (P = 0.045). Palliative Medicine 2007; 21: 193—198

Changes in individual quality of life (IQoL) and its correlates in patients admitted to an academic palliative care unit are reported. Correlates tested were pain, fatigue, and reconceptualization (changes in content of quality of life, a measure of adaptation). IQoL was measured with a structured interview method that derives an IQoL score from evaluations of individually nominated life areas. Twenty-nine patients were included in the study and interviewed shortly after unit admission. Sixteen patients were interviewed before discharge (more than 1 week between interviews). The results show that mean IQoL scores improved notably. Pain and IQoL correlated negatively and moderately at admission, and correlations between fatigue and pain at discharge and IQoL were negative and strong. An increasing number of changes in life areas was moderately associated with worsening IQoL. Life area's most often nominated were relationships with family members and friends, symptoms and aspects related to maintaining control. Palliative Medicine 2007; 21: 199—205

Background: Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. Aim: A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Methods: Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the Clinical Outcomes Group and by the SIGNAL score. Results: In total, 5715 persons were examined: 69% women, 87% white, 83% protestant. Ninety-four percent of studies show some positive effects of religious/spiritual beliefs on bereavement, but there was a great heterogeneity regarding included populations and outcome measurements. Conclusion: Available data do not allow for a definite answer on whether religious/spiritual beliefs effectively influence bereavement as most studies suffer from weaknesses in design and methodological flaws. Further research is needed. Recommendations for further research are given. Palliative Medicine 2007; 21: 207—217

To elucidate the research priorities of palliative care patients we conducted focus groups with day therapy and hospice in-patients with cancer with an estimated prognosis of 6 months or less. Patients were positive about taking part in this research project identifying five main priorities for future research — talking with patients; help for patients and families; oncology; symptoms; medication/treatments. Patients gave great emphasis to communication issues and little to symptom control. A patient questionnaire was created with these themes which is currently being used in five hospices across East Anglia. This paper describes the qualitative component of the study. Palliative Medicine 2007; 21: 219—225

The psychosocial strategies used by advanced cancer patients to manage anorexia are poorly described. A greater understanding of them may guide clinicians to provide appropriate interventions to patients and caregivers. Methods: Glaserian Grounded Theory was used to recruit and analyse data from two women and seven men with advanced cancer suffering from anorexia. They were interviewed about the emotional and social impact of appetite loss and the strategies that they used to compensate for reduced food intake. Results: Shifting to conscious control (overeating) was the basic social psychological process employed by participants to manage the emotional and social consequences of declining intake. Although a number of symptoms were found to contribute, nausea or the anticipation of emesis provoked by food was most commonly named as the ultimate barrier to eating. Discussion: Participants retained the motivation and ability to eat without appetite, providing the intake of food did not provoke nausea or the anticipation of emesis. Nutritional interventions must be tailored around patients' eating capabilities. Counselling and education programmes that assist family members in understanding the shift to conscious control over eating are required. Palliative Medicine 2007; 21: 227—233

Background: Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. Study aim: To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. Design: In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. Results : Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. Conclusion: Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings. Palliative Medicine 2007; 21: 235—241

The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient. Palliative Medicine 2007; 21: 243—248

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation.

Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D > 15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patient's spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19—7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09—1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15—0.81), or were sufficiently aware of the patient's thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25—0.88), they were less likely to suffer from depressive distress.

These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patient's disease experiences. This will reduce the negative caregiving impact on the caregiver's health, which in turn may prevent the development of depressive distress among family caregivers. Palliative Medicine 2007; 21: 249—257