Jackie Ellis

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 patients and caregivers 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.

The impact of lung cancer on patients and carers

This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.

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.

BackgroundA 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.MethodsFive 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.ResultsThe 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.DiscussionThe 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.

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 scales 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 scales 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.

Understanding the Symptom Experience of Patients with Gastrointestinal Cancers in the First Year Following Diagnosis: Findings from a Qualitative Longitudinal Study

BackgroundThe aim of the paper was to explore the experiences of people with gastrointestinal cancer within the first year following their diagnosis. The main objective was to contextualise and map the experiences of this cancer population over the first year following diagnosis to determine the indicators of change so that these patients might be supported at the most appropriate time points.MethodsA qualitative longitudinal study design using semistructured interviews was adopted for this study with a heterogeneous sample of 18 patients with gastrointestinal cancers. Interviews were conducted on four time points over the first year providing a total of 60 interview datasets.ResultsFive key themes generated from the analysis including symptoms; impact of symptoms on everyday life; return to work and survivorship; impact on sense of self, and fear and uncertainty.ConclusionsThese findings provide important insight into the process of change which occurs over the first year following diagnosis and enhances our understanding of the most appropriate time points for support.

The meaning of suffering in patients with advanced progressive cancer

Background There is a lack of research into suffering and what it means to the individual patient with advanced cancer and its importance in end of life care. Aims To explore the concept of suffering and distress by eliciting what individual patients with advanced cancer perceived as suffering and how they utilised their own resources to manage suffering. Method A qualitative study design of focused narrative interviews analysed by thematic analysis was conducted with a heterogeneous sample of 49 palliative day care patients. Results For those patients who perceived they were suffering, this study revealed a wide spectrum of definitions which could be described within the following areas; the unavoidable and avoidable suffering, physical and emotional suffering, suffering as loss and finally transformation through suffering. Conclusions These findings provide important insight that broadens and enriches our understanding into the concept of suffering and how patients utilise their resources, which may have important implications for end of life care.

Participation in a randomised controlled feasibility study of a complex intervention for the management of the Respiratory Symptom Distress Cluster in lung cancer: patient, carer and research staff views.

&NA; This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non‐pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness‐cough‐fatigue symptom cluster in lung cancer. Semi‐structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow‐up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow‐on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer.