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Title: A pilot randomised controlled trial of a holistic needs assessment questionnaire in a supportive and palliative care service
Author: Ahmed, Nisar
ISNI:       0000 0004 6421 8340
Awarding Body: University of Sheffield
Current Institution: University of Sheffield
Date of Award: 2017
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Background: Studies suggest that cancer and non-cancer patients have needs (e.g. physical, psychological, religious, spiritual needs and information needs) that are not being adequately met. The review undertaken has presented a strong argument in favour of the case for a comprehensive holistic assessment of supportive and palliative care needs (Ahmed, 2010; Ahmed et al., 2014). At present, there is no widely used systematic, evidence-based, holistic approach to screening patients for supportive and palliative care needs. There is evidence to indicate a lack of studies on the clinical utility of tools (Ahmed, 2010; Ahmed et al., 2014; Ahmed et al., 2015). The Sheffield Profile for Assessment and Referral for Care (SPARC) is a multidimensional screening tool which gives a profile of needs to identify patients who may benefit from additional supportive or palliative care, regardless of diagnosis or stage of disease. Despite rigorous psychometric development, preliminary field-testing, and validation, the clinical utility of SPARC has yet to be established (Ahmed, 2010; Ahmed et al., 2014; Ahmed et al., 2015). This doctoral study was conducted within the context of a pragmatic randomised controlled trial and nested within the MRC framework for evaluating complex interventions. From reviewing the literature, it became increasingly apparent of the importance of combining quantitative and qualitative research methods approaches in the development and evaluation of complex interventions in palliative care research. This study provides an opportunity to 'test-drive' SPARC with patients that have supportive and palliative care needs. The hypothesis was that the use of a validated multidimensional holistic screening tool for supportive and palliative care needs, namely; SPARC, would lead to improved recognition of supportive and palliative care needs, and improved health care outcomes for patients (Ahmed, 2010; Ahmed et al., 2014; Ahmed et al., 2015). Aims and Objectives: The primary objective was to design and undertake a pilot study to evaluate clinical outcomes associated with the use of SPARC. The trial itself focussed primarily on outcomes, not on the processes involved in implementing the intervention. An additional element of this doctoral study and a secondary objective was to undertake a process evaluation (comprising of retrospective case note reviews, semi-structured interviews with patients and health care professionals) (Ahmed et al., 2015). Methods: This was an open, pragmatic, randomised controlled trial. Patients (n=182) referred to the palliative care service were randomised to receive SPARC at baseline (n=87) or after a period of two weeks (waiting-list control n=95). Primary outcome measure is the difference in score between Measure Yourself Concerns and Wellbeing (MYCAW) patient-nominated Concern 1 on the patient self-scoring visual analogue scale at baseline and the two-week follow-up. Secondary outcomes include difference in scores in the MYCAW, EuroQoL (EQ- 5D), and Patient Enablement Instrument (PEI) scores at Weeks 2, 4, and 6. As part of a process evaluation, case notes were reviewed at week 8, and semi-structured interviews were undertaken with a sub-group of patients and health care professionals (Ahmed et al., 2015). Results: There was a significant association between change in MYCAW score and whether the patients were in the intervention or control group X² trend = 5.51; degrees of freedom = 1; P = 0.019). A higher proportion of patients in the control group had an improvement in MYCAW score from baseline to Week 2: control (34 of 70 [48.6%]) vs. intervention (19 of 66 [28.8%]). There were no significant differences (no detectable effect) between the control and intervention groups in the scores for EQ-5D and Patient Enablement Instrument at 2, 4, or 6-week follow-up (Ahmed et al., 2015). Most patients interviewed [30/33], found SPARC either quite easy to complete, fairly straightforward, simple or had no problems in completing it. Only a small number of participants found questions on SPARC 'too sensitive or upsetting'. A crucial finding in the context of the trial was the large proportion of patients interviewed [30/33] who did not experience or report any noticeable change, or beneficial effects after completing SPARC (EAPC abstract, 2015). Most health care professionals had something positive to say about SPARC and had previous experience of using SPARC, and most were considering using it at some point in the future. A number of barriers were identified to the relief of distress highlighted by SPARC. Only 5/164=3.0% patient notes made any direct reference to SPARC. Conclusion: This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardised holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan (Ahmed et al., 2015). This is supported by review of case notes, and the interview data from patients that indicate that most patients felt that no particular action or benefit followed from the completion of SPARC (Ahmed et al., 2015). Only a few patients who had no recent contact with palliative care service and scored high for some SPARC items were recalled by the service and reassessed. Overall, participants and health care professionals considered SPARC an acceptable and relevant tool for the clinical assessment of supportive and palliative care needs (EAPC abstract, 2015). The potential negative effect of SPARC in a specialist palliative care service could be due to the failure of health care professionals to act on identified needs in a timely manner, or related to the raising of patients' expectations that are not subsequently met. The qualitative study helps in the interpretation of the outcome results, and provides useful insights into how SPARC might be used in practice. Early identification of and monitoring of symptoms is only useful if effective treatment programs or systems are in place to address identified needs, and we must consider and evaluate new methods to achieve practice change. The effective integration of SPARC into routine care and standard operating systems requires further investigation (Ahmed, 2010; Ahmed et al., 2014; Ahmed et al., 2015).
Supervisor: Noble, Bill ; Ahmedzai, Sam H. ; Collins, Karen Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available