The Manchester cough in lung cancer scale: the development and preliminary validation of a new assessment tool.

CONTEXT: Cough is a common distressing symptom in lung cancer patients. Its assessment is hampered by the lack of a validated scale to measure the complex cough experience in this population. OBJECTIVES: To describe the development and preliminary validation of a scale to measure cough in lung cancer patients. METHODS: In the first phase, collection of qualitative data from patient interviews, a review of literature, and identification of noncancer cough scales resulted in the development of a pool of 30 items. This item pool was tested for appropriateness of content and breadth of coverage with 18 patients with lung cancer and 25 health care professionals. The second phase was the operationalization/phrasing of items. The final phase was the scale's field testing with 139 patients, 49 of whom repeated the assessment after one week. RESULTS: The first phase led to the deletion of several items and the addition of four, resulting in a final scale for field testing of 21 items. In the field testing, the scale was decreased to 10 items, eliminating items on psychometric grounds. The final scale's Cronbach alpha (internal consistency) was 0.86, item to total correlations ranged from 0.40 to 0.76, and test-retest reliability was high (intraclass correlation=0.83). CONCLUSION: We have developed a promising tool to assess cough in lung cancer, but this needs validation, and future studies should determine whether this is a sensitive and responsive tool. A fully validated tool can be used in the clinical assessment of cough in cancer patients, and as a unidimensional impact scale in the measurement of cough as an outcome in intervention studies.

Considerations in developing and delivering a nonpharmacological intervention for symptom management in lung cancer: the views of patients and informal caregivers.

CONTEXT: Few studies consider patient's and caregiver's preferences when developing nonpharmacological interventions. This is important to develop acceptable and accessible nonpharmacological interventions for patients with cancer. OBJECTIVES: The objective of this study was to identify the views of patients with lung cancer and their informal caregivers on the desirable components of a novel nonpharmacological intervention for the management of the symptom cluster of cough, breathlessness, and fatigue, and their needs and preferences regarding uptake and delivery of the intervention. METHODS: This study was qualitative in orientation, using semistructured interviews and framework analysis to elicit the views of 37 patients with lung cancer and 23 caregivers regarding the issues that were perceived to be important regarding the development and delivery of a nonpharmacological intervention. RESULTS: A number of key issues were identified that carried important implications for patient participation and adherence to the intervention, including the perceived relevance of potential techniques; appreciable benefits in the short term; convenience; variation in patient preferences; timing of the intervention; venue; caregiver involvement; the provider of the intervention, and contact with other patients. CONCLUSION: The data from this study have provided insight into the key issues that are likely to influence the development, uptake, and delivery of a nonpharmacological intervention to help manage the respiratory symptom cluster of cough, breathlessness, and fatigue. It is crucial that these findings are considered when developing and modeling a nonpharmacological symptom management intervention.

Applying Best-Worst scaling methodology to establish delivery preferences of a symptom supportive care intervention in patients with lung cancer.

BACKGROUND: Delivering a non-pharmacological symptom management intervention in patients with lung cancer is often challenging due to difficulties with recruitment, high attrition rates, high symptom burden, and other methodological problems. The aim of the present study was to elicit quantitative estimates of utility (benefit) associated with different attribute levels (delivery options) of a symptom management intervention in lung cancer patients. METHODS: An application of Best-Worst scaling methodology was used. Effects (attributes) tested included the location of the intervention (home or hospital), type of trainer (health professional or trained volunteer), caregiver involvement or not, and intervention delivered individually or in groups of patients. Participants were asked to evaluate and compare their preferences (utilities) towards the different attribute levels within scenarios and select the pair of attribute levels that they consider to be furthest apart. RESULTS: Eighty-seven patients with lung cancer participated. The most important preferences for an intervention included the location (being delivered at home) and delivered by a health care professional. The least important preference was the involvement of a caregiver. Gender had an effect on preferences, with females being less inclined than men to prefer to receive an intervention in the home than the hospital and less inclined than men to have no other patients present. Furthermore, older participants and those in advanced stages of their disease were less inclined to have no other patients present compared to younger participants and those with earlier stages of disease, respectively. CONCLUSION: Considering patient preferences is an important step in developing feasible, patient-centred, appropriate and methodologically rigorous interventions and this study provided indications of such patient preferences.

Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals.

BACKGROUND: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention. METHODS: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach. RESULTS: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short. DISCUSSION: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient's homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.

How well trained are clergy in care of the dying patient and bereavement support?

Although comparatively few people have regular contact with a church or spiritual leader, during times of terminal illness or bereavement, clergy are expected to be available and able to provide support. This study was carried out to determine the perceptions of clergy on the training they had received in supporting the dying patient and the bereaved. A sample of clergy working in the diocese of Sheffield was sent a questionnaire to assess what skills and knowledge clergy believed they had in this area, together with areas where they would wish for further training. The questionnaire was developed with input from hospital, hospice, and academic chaplains, and palliative care consultants. A subsidiary questionnaire was sent to clergy training colleges to evaluate the teaching offered. There was a trend across all denominations that those who had trained more recently were more likely to have received relevant training. Most clergy believed that they possessed adequate liturgical skills, but 13% felt they possessed none or little skill in pastoral care of the dying. Seventy-one percent indicated that they would like further training in pastoral care of the dying and 66.3% desired training in care of the bereaved. Of the 50% of training colleges that responded, the number of hours of training on pastoral care of the dying ranged from 6 to 36 hours (median 23 hours and mean 25 hours) and only 26% believed that their training in pastoral support skills was comprehensive. This study suggests that care of the dying and the bereaved is identified by clergy as an area in need of further training by the majority of clergy and should be part of the core curriculum within clergy training colleges and late training programs.

A prospective study of the roles, responsibilities and stresses of chaplains working within a hospice.

Spiritual care is an integral part of palliative care and if asked, most members of a palliative care team would state they address spiritual issues. The majority of hospices have support from a chaplain. This study was to determine the roles of chaplains within hospices and to look at their levels of stress. A questionnaire containing both open and closed questions was sent to chaplains working within hospices in the UK. The questionnaire enquired about number of sessions, specific roles of chaplain, whether they were members of the multidisciplinary team and their sources of internal support. Stress was measured on a 10-point Likert scale and the GHQ12. One hundred and fifteen questionnaires were returned, with a 72% response rate. The majority (62%) defined their denomination as Church of England and Free Church (24%); 71% of respondents had parish commitments in addition to their hospice role. Roles were predominantly defined as spiritual care of patients and staff (95%) and bereavement support of relatives (76%) and 75% regularly attended the multidisciplinary meetings. Senior medical and nursing staff and other chaplains were perceived as providing most support. Median Likert score for stressfulness was 5, and 23% scored at or above the threshold on the GHQ12 for identifiable psychological morbidity. Clear role definition was associated with less perceived stress whereas the provision of bereavement support was associated with statistically significant increased perceived stress. The role of a chaplain within a hospice is varied and this study suggests that the provision of training and formal support is to be recommended.

Consultation by the United Kingdom to South Africa to develop human diversity teaching.

This paper describes consultation provided by the University of Leicester to the Medical University of Southern Africa (Medunsa) funded through British Council and the Department for International Development to develop a course addressing issues of diversity at Medunsa. The aims of the link were essentially for Leicester to provide support and guidance on the development of aspecific module. This inevitably included the provision of training in key areas such as teaching skills and evaluation of teaching. This paper focuses on the potential difficulties of such a link, which included cultural differences, issues of hierarchy and student influence. The project outcomes have been the development of a coherent module on human diversity which is assessed in such a way as to support the development of student writing skills, increased staff teaching skills and a joint conference to disseminate the learning that has taken place from the project.