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      The VOICE Study: Valuing Opinions, Individual Communication and Experience: building the evidence base for undertaking Patient-Centred Family Meetings in palliative care - a mixed methods study

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          Abstract

          Background

          Despite family meetings being widely used to facilitate discussion among patients, families, and clinicians in palliative care, there is limited evidence to support their use. This study aims to assess the acceptability and feasibility of Patient-Centred Family Meetings in specialist inpatient palliative care units for patients, families, and clinicians and determine the suitability and feasibility of validated outcome measures from the patient and family perspectives.

          Methods

          The study is a mixed-methods quasi-experimental design with pre-planned Patient-Centred Family Meetings at the intervention site. The patient will set the meeting agenda a priori allowing an opportunity for their issues to be prioritised and addressed. At the control site, usual care will be maintained which may include a family meeting. Each site will recruit 20 dyads comprising a terminally ill inpatient and their nominated family member. Pre- and post-test administration of the Distress Thermometer, QUAL-EC, QUAL-E, and Patient Health Questionnaire-4 will assess patient and family distress and satisfaction with quality of life. Patient, family, and clinician interviews post-meeting will provide insights into the meeting feasibility and outcome measures. Recruitment percentages and outcome measure completion will also inform feasibility.

          Descriptive statistics will summarise pre- and post-meeting data generated by the outcome measures. SPSS will analyse the quantitative data. Grounded theory will guide the qualitative data analysis.

          Discussion

          This study will determine whether planned Patient-Centred Family Meetings are feasible and acceptable and assess the suitability and feasibility of the outcome measures. It will inform a future phase III randomised controlled trial.

          Trial registration

          Australian New Zealand Clinical Trials Registry ACTRN12616001083482 on 11 August 2016

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          Most cited references21

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          The Patient Health Questionnaire Somatic, Anxiety, and Depressive Symptom Scales: a systematic review.

          Kurt Kroenke, Robert L Spitzer, Janet B W Williams … (2010)
          Depression, anxiety and somatization are the most common mental disorders in primary care as well as medical specialty populations; each is present in at least 5-10% of patients and frequently comorbid with one another. An efficient means for measuring and monitoring all three conditions would be desirable. Evidence regarding the psychometric and pragmatic characteristics of the Patient Health Questionnaire (PHQ)-9 depression, generalized anxiety disorder (GAD)-7 anxiety and PHQ-15 somatic symptom scales are synthesized from two sources: (1) four multisite cross-sectional studies (three conducted in primary care and one in obstetric-gynecology practices) comprising 9740 patients, and (2) key studies from the literature that have studied these scales. The PHQ-9 and its abbreviated eight-item (PHQ-8) and two-item (PHQ-2) versions have good sensitivity and specificity for detecting depressive disorders. Likewise, the GAD-7 and its abbreviated two-item (GAD-2) version have good operating characteristics for detecting generalized anxiety, panic, social anxiety and post-traumatic stress disorder. The optimal cutpoint is > or = 10 on the parent scales (PHQ-9 and GAD-7) and > or = 3 on the ultra-brief versions (PHQ-2 and GAD-2). The PHQ-15 is equal or superior to other brief measures for assessing somatic symptoms and screening for somatoform disorders. Cutpoints of 5, 10 and 15 represent mild, moderate and severe symptom levels on all three scales. Sensitivity to change is well-established for the PHQ-9 and emerging albeit not yet definitive for the GAD-7 and PHQ-15. The PHQ-9, GAD-7 and PHQ-15 are brief well-validated measures for detecting and monitoring depression, anxiety and somatization. Copyright 2010. Published by Elsevier Inc.
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            The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]

            Amy Abernethy, Tania Shelby-James, Belinda S Fazekas … (2005)
            Background The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. Methods Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. Results Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70–90), with greatest disagreement at lower levels (≤40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. Conclusion The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care.
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              In search of a good death: observations of patients, families, and providers.

              Karen Steinhauser, Elizabeth Clipp, Maya McNeilly … (2000)
              Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
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                Author and article information

                Contributors
                Philippa J. Cahill: +61(0) 434077674 , philippa.cahill1@my.nd.edu.au
                Christine R. Sanderson: christinersanderson@gmail.com
                Elizabeth A. Lobb: liz.lobb@health.nsw.gov.au
                Jane L. Phillips: jane.phillips@uts.edu.au
                Journal
                Journal ID (nlm-ta): Pilot Feasibility Stud
                Journal ID (iso-abbrev): Pilot Feasibility Stud
                Title: Pilot and Feasibility Studies
                Publisher: BioMed Central (London )
                ISSN (Electronic): 2055-5784
                Publication date (Electronic): 20 February 2018
                Publication date PMC-release: 20 February 2018
                Publication date Collection: 2018
                Volume: 4
                Electronic Location Identifier: 51
                Affiliations
                [1 ]ISNI 0000 0004 0402 6494, GRID grid.266886.4, School of Medicine, , University of Notre Dame Australia, ; Darlinghurst, Australia
                [2 ]ISNI 0000 0004 1936 7611, GRID grid.117476.2, Faculty of Health, , University of Technology Sydney, ; Ultimo, Australia
                [3 ]ISNI 0000 0004 0402 6494, GRID grid.266886.4, School of Nursing, , University of Notre Dame Australia, ; Darlinghurst, Australia
                [4 ]Calvary Health Care Kogarah, Kogarah, Australia
                [5 ]ISNI 0000 0004 0402 6494, GRID grid.266886.4, School of Medicine, , University of Notre Dame Australia, ; 160 Oxford Street, Darlinghurst, NSW 2010 Australia
                Article
                Publisher ID: 225
                DOI: 10.1186/s40814-017-0225-9
                PMC ID: 5819159
                PubMed ID: 29479471
                SO-VID: 4092430d-7caa-42d3-b268-33bd078e9431
                Copyright © © The Author(s). 2018
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                Date received : 29 March 2017
                Date accepted : 21 December 2017
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000934, Department of Industry, Innovation, Science, Research and Tertiary Education, Australian Government;
                Award ID: Collaborative Research Network
                Categories
                Subject: Study Protocol
                Custom metadata
                issue-copyright-statement © The Author(s) 2018

                Keywords: palliative care,family,meeting,conference,terminal care
                Data availability:
                Keywords: palliative care, family, meeting, conference, terminal care

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