Rachel Perry

A team approach to recruitment in hospice research: engaging patients, close people and health professionals

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

‘The ICECAP-SCM tells you more about what I’m going through’: A think-aloud study measuring quality of life among patients receiving supportive and palliative care

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

“THE ICECAP-SCM TELLS YOU MORE ABOUT WHAT I'M GOING THROUGH”—MEASURING THE QUALITY OF LIFE AMONGST PATIENTS RECEIVING SUPPORTIVE AND PALLIATIVE CARE

Introduction The ICECAP Supportive Care Measure (ICECAP-SCM) is a self-complete questionnaire developed to rate quality towards the end of life, particularly for economic evaluation. It measures a persons capability to experience a good life and death. Aim(s) and method(s) The study aimed to determine the feasibility of completing ICECAP-SCM alongside EQ-5D-5L and ICECAP-A (measures commonly used for economic evaluation). Each measure was completed by hospice patients (n=33), close persons (n=22) and healthcare professionals (HCPs n=17) in a ‘think aloud’ semi-qualitative interview. Five raters identified the frequency of error (e.g. misunderstanding, poor memory) from interview transcripts. Qualitative data were analysed using constant comparison, focusing on issues affecting response. Results Amongst patients, fewest errors were identified for ICECAP-SCM (3.9%) and the most for EQ5D-5L (9.7%). Amongst close persons there were also fewest errors in the ICECAP-SCM (4.5%) compared to ICECAP-A (5.5%) and EQ-5D-5L (5.5%). HCPs had most errors for ICECAP-SCM (6.7%) and fewest for EQ-5D-5L (3.5%). Qualitative data suggested that HCPs found EQ-5D-5L easiest to answer because it focuses on health states which could be directly observed. The ICECAP-SCM, appeared more meaningful to patients near the end of life and close persons; it was also easier to complete. Conclusion(s) This paper provides insight into the meaning of quality of life for those approaching death, those close to them and those involved in their care. Complexities in disease trajectories and adaptation to poor health make quality of end of life difficult to measure. The ICECAP-SCM captures the subtleties required and may be useful in evaluating future palliative care interventions.

Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life

Background and ObjectivesAdaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL).MethodsQualitative data from ‘thinkaloud’ interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures.ResultsData collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions.ConclusionDespite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.

37 The role of the research nurse in developing a research culture at a hospice

The National Institute of Health Research and Charities Consortium for Hospice and Community Research have stated that the goal for all hospices is to be research active and to be recruiting into portfolio studies by 2022. This poster draws on a case study from one research nurse as she sought to develop research capacity at a hospice in the West Midlands. The poster aims to highlight four key areas the innovative role covers showing how a research nurse is central to: Facilitating engagement with research at the hospice. From introducing (sceptical) staff to the range of research studies they can be involved in to the opportunities to embed research into the daily work of both the in–patient and day services Being a bridge between the often–competing pressures of clinical care and research by finding novel solutions to obstacles Empowering staff by encouraging them to be a part of research in everyday practice as well as being a resource for staff by supporting them with academic assignments producing posters for conferences and disseminating research findings through journal discussions Building future research opportunities by developing a research nurse network where ideas and good practice can be shared widely across different organisations.

The ICECAP-SCM tells you more about what I'm going through

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

The ICECAP-SCM tells you more about what I'm going through: A think aloud study measuring quality of life amongst patients receiving supportive and palliative care

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.