Top

Published in:

Open Access 01-12-2022 | Care | Research

State-wide implementation of patient-reported outcome measures (PROMs) in specialized outpatient palliative care teams (ELSAH): A mixed-methods evaluation and implications for their sustainable use

Authors: Hannah Seipp, Jörg Haasenritter, Michaela Hach, Dorothée Becker, Dania Schütze, Jennifer Engler, Stefan Bösner, Katrin Kuss

Published in: BMC Palliative Care | Issue 1/2022

Abstract

Background

Such patient-reported outcome measures (PROMs) and patient-centered outcome measures as the Integrated Palliative Care Outcome Scale (IPOS), Phase of Illness, and IPOS Views on Care (IPOS VoC), facilitate patient-centered care and help improve quality. To ensure sustainability, implementation and usage should be adapted according to setting. When settings involve several distinct teams that differ in terms of views and working practices, it is more difficult to integrate outcome measures into daily care. The ELSAH study aimed to learn how health professionals working in specialized outpatient palliative care (SOPC) viewed the use of these outcome measures in daily care, and what they express is needed for successful sustainable, state-wide application.

Methods

We used a parallel mixed-methods design involving three focus groups (n = 14) and an online-survey based on normalization process theory (n = 76). Most participants were nurses and physicians from 19 SOPC-teams in Hesse, Germany. We used a triangulation protocol including convergence coding matrices to triangulate findings.

Results

The majority of health professionals were able to integrate the outcome measures into their working lives and said that it had become a normal part of their day-to-day work. To ensure their sustainable integration into daily care, the motivation and concerns of health professionals should be taken into consideration. Health professionals must clearly recognize how the measures help improve daily care and quality evaluation.

Conclusions

To implement the outcome measures in a number of teams, it will be necessary to take individual team characteristics into account, because they influence motivation and concerncs. Further, it will be necessary to offer opportunities for them to engage in peer support and share information with other teams. The sustainable use of outcome measures in SOPC will require continuous support within each team as well as across teams. When several distinct teams are working in the same setting, a cross-team coordination unit can help to coordinate their work efficiently.

Trial registration

German Clinical Trials Register DRKS-ID: DRKS00012421; www.germanctr.de/DRKS00012421

Available only for authorised users

Bausewein C, Daveson BA, Currow DC, Downing J, Deliens L, Radbruch L, et al. EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services - Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med. 2015;30:1–17. https://doi.org/10.1177/0269216315589898.CrossRef

Dudgeon D. The impact of measuring patient-reported outcome measures on quality of and access to palliative care. J Palliat Med. 2018;21:S76–80. https://doi.org/10.1089/jpm.2017.0447.CrossRefPubMed

van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ. How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a clinical decision support tool using a delphi design. BMC Med. 2015;13:263. https://doi.org/10.1186/s12916-015-0449-6.CrossRefPubMedPubMedCentral

Aslakson R, Dy SM, Wilson RF, Waldfogel JM, Zhang A, Isenberg SR, et al. Assessment Tools for Palliative Care. Rockville (MD): Agency for Healthcare Research and Quality (AHRQ); 2017.

Stiel S, Pastrana T, Balzer C, Elsner F, Ostgathe C, Radbruch L. Outcome assessment instruments in palliative and hospice care—a review of the literature. Support Care Cancer. 2012;20:2879–93.CrossRefPubMed

Witt J, Murtagh FEM, de Wolf-Linder S, Higginson IJ, Daveson BA. Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures: A Brief Introduction. 2014. https://www.kcl.ac.uk/cicelysaunders/attachments/Studies-OACC-Brief-Introduction-Booklet.pdf. Accessed 12 Jul 2021.

Eagar K, Watters P, Currow DC, Aoun SM, Yates P. The Australian Palliative Care Outcomes Collaboration (PCOC)–measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev. 2010;34:186–92. https://doi.org/10.1071/AH08718.CrossRefPubMed

Antunes B, Harding R, Higginson IJ. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014;28:158–75. https://doi.org/10.1177/0269216313491619.CrossRefPubMed

Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implementation Sci. 2009. https://doi.org/10.1186/1748-5908-4-50.CrossRef

10.

Leemans K, van den Block L, Vander Stichele R, Francke AL, Deliens L, Cohen J. How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation. Support Care Cancer. 2015;23:3503–11. https://doi.org/10.1007/s00520-015-2687-8.CrossRefPubMed

11.

Daveson BA, Simon ST, Benalia H, Downing J, Higginson IJ, Harding R, Bausewein C. Are we heading in the same direction? European and African doctors’ and nurses’ views and experiences regarding outcome measurement in palliative care. Palliat Med. 2012;26:242–9. https://doi.org/10.1177/0269216311409614.CrossRefPubMed

12.

Nguyen H, Butow P, Dhillon H, Sundaresan P. A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care. J Med Radiat Sci. 2021;68:186–95. https://doi.org/10.1002/jmrs.421.CrossRefPubMed

13.

Lind S, Sandberg J, Brytting T, Fürst CJ, Wallin L. Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study. Palliat Support Care. 2018;16:698–705. https://doi.org/10.1017/S1478951517001158.CrossRefPubMed

14.

Proctor E, Silmere H, Raghavan R, Hovmand P, Aarons G, Bunger A, et al. Outcomes for implementation research: Conceptual distinctions, measurement challenges, and research agenda. Adm Policy Ment Health. 2011;38:65–76. https://doi.org/10.1007/s10488-010-0319-7.CrossRefPubMed

15.

Ogden T, Fixsen DL. Implementation Science. Zeitschrift für Psychologie. 2014;222:4–11. https://doi.org/10.1027/2151-2604/a000160.CrossRef

16.

May C, Finch T. Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology. 2009;43:535–54. https://doi.org/10.1177/0038038509103208.CrossRef

17.

McEvoy R, Ballini L, Maltoni S, O’Donnell CA, Mair FS, MacFarlane A. A qualitative systematic review of studies using the normalization process theory to research implementation processes. Implement Sci. 2014;9:2. https://doi.org/10.1186/1748-5908-9-2.CrossRefPubMedPubMedCentral

18.

May CR, Cummings A, Girling M, Bracher M, Mair FS, May CM, et al. Using normalization process theory in feasibility studies and process evaluations of complex healthcare interventions: a systematic review. Implement Sci. 2018;13:80. https://doi.org/10.1186/s13012-018-0758-1.CrossRefPubMedPubMedCentral

19.

Gemeinsamer Bundesausschuss. Richtlinie des Gemeinsamen Bundesausschusses zur Verordnung von spezialisierter ambulanter Palliativversorgung: SAPV-RL; 25.06.2010.

20.

Deutsche Gesellschaft für Palliativmedizin. Nationales Hospiz- und Palliativregister: Informationen zum Nationalen Hospiz- und Palliativregister. 2019. https://www.dgpalliativmedizin.de/images/19_10_01_Informationsbrosch%C3%BCre_NHPREGISTER_V7.pdf. Accessed 5 Jul 2022.

21.

Kuss K, Seipp H, Becker D, Bösner S, Erler A, Gruber D, et al. Study protocol: evaluation of specialized outpatient palliative care in the German state of Hesse (ELSAH study) - work package I: assessing the quality of care. BMC Palliat Care. 2018;17:111–9. https://doi.org/10.1186/s12904-018-0363-8.CrossRefPubMedPubMedCentral

22.

Seipp H, Haasenritter J, Hach M, Becker D, Ulrich L-R, Schütze D, et al. How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals. Palliat Med. 2021;35:1844–55. https://doi.org/10.1177/02692163211026516.CrossRefPubMed

23.

Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Qual Saf Health Care. 1999;8:219–27. https://doi.org/10.1136/qshc.8.4.219.CrossRef

24.

Eagar K, Gordon R, Green J, Smith M. An Australian casemix classification for palliative care: lessons and policy implications of a national study. Palliat Med. 2004;18:227–33. https://doi.org/10.1191/0269216304pm876oa.CrossRefPubMed

25.

Addington-Hall J, Hunt K, Rowsell A, Heal R, Hansford P, Monroe B, Sykes N. Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher’s Index of Patient Priorities (SKIPP). BMJ Support Palliat Care. 2014;4:175–81. https://doi.org/10.1136/bmjspcare-2012-000352.CrossRefPubMed

26.

Seipp H, Haasenritter J, Hach M, Becker D, Schütze D, Engler J, et al. Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness. BMC Palliat Care. 2022;21:60. https://doi.org/10.1186/s12904-022-00944-1.CrossRefPubMedPubMedCentral

27.

Snape D, Spencer L. The foundations of qualitative research. In: Ritchie J, Lewis J, editors. Qualitative research practice: a guide for social science students and researchers. London: Sage Publications; 2003. p. 1–23.

28.

Kuckartz U. Mixed methods: methodologie, Forschungsdesigns und Analyseverfahren. Wiesbaden: Springer VS; 2014.

29.

Tariq S, Woodman J. Using mixed methods in health research. JRSM Short Rep. 2013;4:2042533313479197. https://doi.org/10.1177/2042533313479197.CrossRefPubMedPubMedCentral

30.

Levitt HM, Bamberg M, Creswell JW, Frost DM, Josselson R, Suárez-Orozco C. Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: The APA Publications and Communications Board task force report. Am Psychol. 2018;73:26–46. https://doi.org/10.1037/amp0000151.CrossRefPubMed

31.

Statistisches Bundesamt. Bevölkerung Deutschlands im Jahr 2020 erstmals seit 2011 nicht gewachsen. 21.06.2021. https://www.destatis.de/DE/Presse/Pressemitteilungen/2021/06/PD21_287_12411.html. Accessed 5 May 2022.

32.

Fachverband SAPV Hessen, Hach M. Handbuch Qualitätsmanagement in der spezialisierten ambulanten Palliativversorgung (SAPV). Frankfurt am Main: Mabuse; 2015.

33.

Cicely Saunders Institute. IPOS Views on Care. https://pos-pal.org/maix/ipos-views-on-care.php. Accessed 5 May 2022.

34.

Pohontsch NJ, Müller V, Brandner S, Karlheim C, Jünger S, Klindtworth K, et al. Gruppendiskussionen in der Versorgungsforschung – Teil 1: Einführung und Überlegungen zur Methodenwahl und Planung. [Group Discussions in Health Services Research - Part 1: Introduction and Deliberations on Selection of Method and Planning]. Gesundheitswesen 2017. https://doi.org/10.1055/s-0043-104379.

35.

Etikan I. Comparison of convenience sampling and purposive sampling. AJTAS. 2016;5:1. https://doi.org/10.11648/j.ajtas.20160501.11.CrossRef

36.

Limesurvey GmbH. LimeSurvey: An Open Source survey tool. Hamburg: LimeSurvey GmbH; 2019.

37.

Rapley T, Girling M, Mair FS, Murray E, Treweek S, McColl E, et al. Improving the normalization of complex interventions: part 1 - development of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT). BMC Med Res Methodol. 2018;18:133. https://doi.org/10.1186/s12874-018-0590-y.CrossRefPubMedPubMedCentral

38.

Finch TL, Girling M, May CR, Mair FS, Murray E, Treweek S, et al. Improving the normalization of complex interventions: part 2 - validation of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT). BMC Med Res Methodol. 2018;18:135. https://doi.org/10.1186/s12874-018-0591-x.CrossRefPubMedPubMedCentral

39.

Gillespie BM, Harbeck E, Lavin J, Gardiner T, Withers TK, Marshall AP. Using normalisation process theory to evaluate the implementation of a complex intervention to embed the surgical safety checklist. BMC Health Serv Res. 2018;18:170. https://doi.org/10.1186/s12913-018-2973-5.CrossRefPubMedPubMedCentral

40.

Hafid A, Howard M, Guenter D, Elston D, Fikree S, Gallagher E, et al. Advance care planning conversations in primary care: a quality improvement project using the Serious Illness Care Program. BMC Palliat Care. 2021;20:122. https://doi.org/10.1186/s12904-021-00817-z.CrossRefPubMedPubMedCentral

41.

Goodridge D, Rana M, Harrison EL, Rotter T, Dobson R, Groot G, et al. Assessing the implementation processes of a large-scale, multi-year quality improvement initiative: survey of health care providers. BMC Health Serv Res. 2018;18:237. https://doi.org/10.1186/s12913-018-3045-6.CrossRefPubMedPubMedCentral

42.

VERBI Software. Consult. Sozialforschung GmbH. MAXQDA 2018. Berlin; 1989 – 2019.

43.

Kuckartz U. Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung. 4th ed. Weinheim, Basel: Beltz Juventa; 2018.

44.

O’Cathain A, Murphy E, Nicholl J. Three techniques for integrating data in mixed methods studies. BMJ (Clinical Research Ed). 2010;341:c4587. https://doi.org/10.1136/bmj.c4587.CrossRefPubMed

45.

Howell D, Rosberger Z, Mayer C, Faria R, Hamel M, Snider A, et al. Personalized symptom management: a quality improvement collaborative for implementation of patient reported outcomes (PROs) in “real-world” oncology multisite practices. J Patient Rep Outcomes. 2020;4:47. https://doi.org/10.1186/s41687-020-00212-x.CrossRefPubMedPubMedCentral

46.

Pinto C, Bristowe K, Witt J, Davies JM, de Wolf-Linder S, Dawkins M, et al. Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study. Ann Palliat Med. 2018;7:S137–50. https://doi.org/10.21037/apm.2018.09.02.CrossRefPubMed

47.

Bradshaw A, Santarelli M, Mulderrig M, Khamis A, Sartain K, Boland JW, et al. Implementing person-centred outcome measures in palliative care: an exploratory qualitative study using Normalisation Process Theory to understand processes and context. Palliat Med. 2021;35:397–407. https://doi.org/10.1177/0269216320972049.CrossRefPubMed

48.

Bausewein C, Simon ST, Benalia H, Downing J, Mwangi-Powell FN, Daveson BA, et al. Implementing patient reported outcome measures (PROMs) in palliative care–users’ cry for help. Health Qual Life Outcomes. 2011;9:27. https://doi.org/10.1186/1477-7525-9-27.CrossRefPubMedPubMedCentral

49.

Radionova N, Becker G, Mayer-Steinacker R, Gencer D, Rieger MA, Preiser C. The views of physicians and nurses on the potentials of an electronic assessment system for recognizing the needs of patients in palliative care. BMC Palliat Care. 2020;19:45. https://doi.org/10.1186/s12904-020-00554-9.CrossRefPubMedPubMedCentral

50.

Hill HC, Paley J, Forbat L. Observations of professional-patient relationships: a mixed-methods study exploring whether familiarity is a condition for nurses’ provision of psychosocial support. Palliat Med. 2014;28:256–63. https://doi.org/10.1177/0269216313499960.CrossRefPubMed

51.

Bausewein C, Schildmann E, Rosenbruch J, Haberland B, Tänzler S, Ramsenthaler C. Starting from scratch: implementing outcome measurement in clinical practice. Ann Palliat Med. 2018;7:S253–61. https://doi.org/10.21037/apm.2018.06.08.CrossRefPubMed

52.

de Groot K, Triemstra M, Paans W, Francke AL. Quality criteria, instruments, and requirements for nursing documentation: a systematic review of systematic reviews. J Adv Nurs. 2019;75:1379–93. https://doi.org/10.1111/jan.13919.CrossRefPubMed

53.

Krawczyk M, Sawatzky R, Schick-Makaroff K, Stajduhar K, Öhlen J, Reimer-Kirkham S, et al. Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care. Qual Health Res. 2019;29:510–21. https://doi.org/10.1177/1049732318761366.CrossRefPubMed

54.

Bausewein C, Daveson B, Benalia H, Simon ST, Higginson IJ. Outcome measurement in palliative care: the essentials. 2011. https://www.kcl.ac.uk/cicelysaunders/attachments/Guidance-on-Outcome-Measurement-in-Palliative-Care.pdf. Accessed 5 May 2022.

55.

Schütze D, Engler F, Ploeger C, Ulrich L-R, Hach M, Seipp H, et al. Specialised outpatient paediatric palliative care team-parent collaboration: narrative interviews with parents. BMJ Support Palliat Care. 2021. https://doi.org/10.1136/bmjspcare-2020-002576.CrossRefPubMed

56.

Metz A, Albers B, Burke K, Bartley L, Louison L, Ward C, Farley A. Implementation practice in human service systems: understanding the principles and competencies of professionals who support implementation. Hum Serv Organ Manag Leadersh Gov. 2021;45:238–59. https://doi.org/10.1080/23303131.2021.1895401. CrossRef

Title: State-wide implementation of patient-reported outcome measures (PROMs) in specialized outpatient palliative care teams (ELSAH): A mixed-methods evaluation and implications for their sustainable use
Authors: Hannah Seipp
Jörg Haasenritter
Michaela Hach
Dorothée Becker
Dania Schütze
Jennifer Engler
Stefan Bösner
Katrin Kuss
Publication date: 01-12-2022
Publisher: BioMed Central
Keywords: Care
Outpatient Palliative Care
Published in: BMC Palliative Care / Issue 1/2022
Electronic ISSN: 1472-684X
DOI: https://doi.org/10.1186/s12904-022-01109-w

Keynote webinar | Spotlight on medication adherence

Springer Medicine

State-wide implementation of patient-reported outcome measures (PROMs) in specialized outpatient palliative care teams (ELSAH): A mixed-methods evaluation and implications for their sustainable use

Abstract

Background

Methods

Results

Conclusions

Trial registration

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Trial registration

Please log in to get access to this content

Other articles of this Issue 1/2022

The relationship between anticipatory grief and illness uncertainty among Chinese family caregivers of patients with advanced lung cancer: a cross-sectional study

An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study

The level of knowledge about palliative care in Iranian patients with cancer

Community prescribing trends and prevalence in the last year of life, for people who die from cancer

Interdisciplinary staff perceptions of advance care planning in long-term care homes: a qualitative study

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan