Ann Caress

Patterns of Access to Community Palliative Care Services: A Literature Review

Policies state that access to palliative care should be provided according to principles of equity. Such principles would include the absence of disparities in access to health care that are systematically associated with social advantage. A review of the literature a decade ago identified that patients with different characteristics used community palliative care services in variable ways that appeared inequitable. The objective of this literature review was to review recent literature to identify whether such variability remains. Searching included the use of electronic databases, scrutinizing bibliographies, and hand searching journals. Articles were included if they were published after 1997 (the date of the previous review) up to the beginning of 2008, and if they reported any data that investigated the characteristics of adult patients in relation to their relative utilization of community palliative care services, with reference to a comparator population. Forty-eight studies met the inclusion criteria. Patients still access community palliative care services in variable ways. Those who are older, male, from ethnic minority populations, not married, without a home carer, are socioeconomically disadvantaged, and who do not have cancer are all less likely to access community palliative care services. These studies do not identify the reasons for such variable access, or whether such variability is warranted with reference to clinical need or other factors. Studies tend to focus on access to specialist palliative care services without looking at the complexities of service use. Studies need to move beyond description of utilization patterns, and examine whether such patterns are inequitable, and what is happening in the referral or other processes that may result in such patterns.

Case studies: A research strategy appropriate for palliative care?

Selecting an appropriate research strategy is key to ensuring that research questions are addressed in a way which has value and is congruent with the overall topic, questions and purpose of the research. This paper will argue that there are situations when a case study strategy is appropriate to use in palliative care research. These include: when complex situations need to be addressed; when context is central to the study; when multiple perspectives need to be recognized; when the design needs to be flexible; when the research needs to be congruent with clinical practice; when there is no strong theory to which to appeal; and when other methodologies could be difficult to conduct. Using case study strategies rigorously and appropriately can contribute to knowledge in a way which is sensitive to the complex, context-dependent and multiprofessional nature of palliative care.

Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts:

The Gold Standards Framework (GSF) has been widely adopted within UK general practices, yet there is little understanding of its impact on the provision of community palliative care services. This study presents data on the anticipation and adoption of the GSF within three Primary Care Trusts in North West England. Forty-seven interviews were conducted with generalist and specialist palliative and primary care professionals. Important aspects of the GSF identified were the patient register, communication and out-of-hours protocols. Positive benefits to professionals included improved communication between professionals and appropriate anticipatory prescribing. Negative aspects included increased nursing workload and the possibility of fewer or later visits for patients. Many respondents believed that the GSF needed local champions to be sustainable. Slow or incomplete adoption was reported. The GSF was recognised as important because it facilitated changes to previously difficult aspects of work between professionals, but few respondents reported direct benefits to patient care.

Development, dimensions, reliability and validity of the novel Manchester COPD fatigue scale

Introduction: Fatigue is a prominent symptom in chronic obstructive pulmonary disease (COPD) and it has distinctive features; however, there is a need for a robust scale to measure fatigue in COPD. Methods: At baseline, 122 patients with COPD (forced expiratory volume in 1 s (FEV1) 52%, women 38%, mean age 66 years) completed a pilot fatigue scale covering a pool of 57 items and underwent a range of tests, including indicators of mood and a short general fatigue questionnaire. All patients responded to the 57-item scale and it was readministered to a subset of 30 patients. The pilot scale was first subjected to constructive validated shortening steps and then to a principal components analysis. Results: The Manchester COPD fatigue scale (MCFS) consists of 27 items, loading into three dimensions: physical, cognitive and psychosocial fatigue. Internal consistency (Cronbach’s α = 0.97) and test–retest repeatability (r = 0.97, p<0.001) were tested. It had significant convergent validity, correlating with the FACIT (Functional Assessment of Chronic Illness Therapy) fatigue scale and the fatigue in Borg scale at baseline and after a 6 minute walk distance (6MWD) test (r = −0.81, 0.53 and 0.63, respectively, p<0.001). Its scores were associated with BODE, SGRQ (St George’s Respiratory Questionnaire) and MRC (Medical Research Council) dyspnoea scores (r = 0.46, 0.8 and 0.51, respectively, p<0.001). The scale demonstrated meaningful discriminating ability; patients who walked <350 m in a 6MWD test as well as depressed patients (⩾16 scores in the Center for Epidemiologic Study on Depression (CES-D) scale) had nearly twice as high fatigue scores as those who walked ⩾350 m or were not depressed (p<0.001). Conclusion: The MCFS provides a simple, reliable and valid measurement of total and dimensional fatigue in moderate stable COPD.

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.

An integrative review of systematic reviews related to the management of breathlessness in respiratory illnesses.

BackgroundBreathlessness is a debilitating and distressing symptom in a wide variety of diseases and still a difficult symptom to manage. An integrative review of systematic reviews of non-pharmacological and pharmacological interventions for breathlessness in non-malignant disease was undertaken to identify the current state of clinical understanding of the management of breathlessness and highlight promising interventions that merit further investigation.MethodsSystematic reviews were identified via electronic databases between July 2007 and September 2009. Reviews were included within the study if they reported research on adult participants using either a measure of breathlessness or some other measure of respiratory symptoms.ResultsIn total 219 systematic reviews were identified and 153 included within the final review, of these 59 addressed non-pharmacological interventions and 94 addressed pharmacological interventions. The reviews covered in excess of 2000 trials. The majority of systematic reviews were conducted on interventions for asthma and COPD, and mainly focussed upon a small number of pharmacological interventions such as corticosteroids and bronchodilators, including beta-agonists. In contrast, other conditions involving breathlessness have received little or no attention and studies continue to focus upon pharmacological approaches. Moreover, although there are a number of non-pharmacological studies that have shown some promise, particularly for COPD, their conclusions are limited by a lack of good quality evidence from RCTs, small sample sizes and limited replication.ConclusionsMore research should focus in the future on the management of breathlessness in respiratory diseases other than asthma and COPD. In addition, pharmacological treatments do not completely manage breathlessness and have an added burden of side effects. It is therefore important to focus more research on promising non-pharmacological interventions.

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 implementation and evaluation of a community rehabilitation team: a case study.

Purpose: In the UK, intermediate care schemes have been implemented with short-term funding, targeted at reducing pressures on hospitals/nursing homes. Many have lacked a reliable evidence-base and there are few publications on one form of intermediate care, the community rehabilitation team (CRT). This study was conducted to establish whether one specific CRT should gain recurrent funding. Methods: This qualitative case study took a multi-method, multi-perspective approach. Data sources included: three focus groups and 40 semi-structured interviews with patients, carers and health services/local authority/CRT staff, document review, and field notes. The resulting data were analysed thematically. Results: The CRT was designed without sufficient reference to reliable evidence and consultation with local health/social services, and implemented against a background of cultural divides between and within these services. It was also hampered by an ambitious remit and premature attempts at outcome evaluation. Patients/carers were satisfied with interventions, functional gains and social aspects of input but there was no reliable evidence of cost-effectiveness. Conclusions: The study highlighted problems related to service implementation, which exposed flaws within current policy of providing short-term funding for schemes that must demonstrate cost-effectiveness quickly in order to gain recurrent funding.

Nurses feelings of 'ownership' of palliative care patients: findings from a qualitative case study

Abstract Background: Partnership working between nurses and other health care professionals is encouraged, as is the building of professional relationships with patients and carers. It is suggested these relationships may give nurses control and a sense of ownership of patients; this may affect otherwise valued aspects of teamwork. Issues of ownership were explored in a study of referrals within community palliative care services. Subjects and Methods: Influences on referrals were studied within three primary care organisations using a qualitative case study strategy (incorporating interviews, observations and documentary analysis). Framework analysis techniques were used to facilitate within case analysis and cross case pattern matching. Results: Forty-seven interviews were conducted with a range of generalist and specialist palliative care professionals (nurses, doctors, allied health professionals), and 10 interviews with patients. Nurses in particular discussed concepts of ownership of patients. This had positive and negative effects: restricting access to a range of services, but promoting personal continuity of care. Doctors described responsibilities towards patients, which could complicate teamwork with competing feelings of responsibility and ownership from different team members. Discussion: Issues of ownership had an impact on the way nurses conducted their work, motivated by desires to both provide personal continuity to patients and to use knowledge about patients to enhance functional authority within the team. Understanding how these issues impact on care provision is essential when working towards best quality care.