Integrating a quality of life assessment and practice support system in palliative home care

The results of this study contributed much-needed knowledge about the use of electronic quality of life (QOL) assessments in palliative homecare nursing, with the ultimate goal of improving outcomes of care for seriously ill older adults and their family caregivers who are living at home.

About the Project

Routine assessment of the perceived healthcare needs of older adults with advancing and life-limiting illnesses is necessary to ensure that patients’ and family caregivers’ concerns are visible to healthcare professionals, so that they can be effectively monitored and addressed.

These types of assessments involve asking people to respond to questions about their symptoms, their physical, psychological, social and existential/spiritual wellbeing, and their experiences with health care. Handheld electronic systems are increasingly used and recommended to facilitate such QOL assessments. However, it is often unclear how to best implement these systems to facilitate uptake in practice. In addition, there is a need for information about the potential of such systems to improve patient- and family-centered outcomes.

This project involved working with clinicians, patients and family caregivers and addressed the aforementioned issues through the integration into practice and evaluation of an innovative electronic QOL Assessment and Practice Support System (QPSS) in palliative homecare nursing.

Project Team

Principal Investigators:

Richard Sawatzky, PhD, MSc, BSc, RN — Trinity Western University

Robin Cohen, PhD, MSc, BSc — Jewish General Hospital

Co-Investigators:

Joan Bottorff, PhD — University of British Columbia

Stirling Bryan, PhD — University of British Columbia

Peter Dodek, MD, MHSc — Providence Health Care

Anne Gadermann, PhD — Providence Health Care

Gunn Grande, PhD — University of Manchester

Joakim Öhlén, PhD — Ersta Sköndal University College

Pamela Ratner, PhD, FCAHS, RN — University of British Columbia

Sheryl Reimer Kirkham, PhD — Trinity Western University

Kara Schick-Makaroff, PhD — University of Alberta

Kelli Stajduhar, PhD, MSN, BN, RN — University of Victoria

Herbert Tsang, PhD — Trinity Western University

Knowledge Users and Partners:

Sharon Baxter, MSW — Canadian Hospice Palliative Care Association

Christie Beveridge — Fraser Health Authority

Shelly Cory, MA — Canadian Virtual Hospice

Mary-Anne Johnson, MSW — Fraser Health End-of-Life Care Program

Hermia Lee — Fraser Health Authority

Barbara McLeod, RN — Fraser Health End-of-Life Care Program

Carolyn Tayler, RN, BSN, MSA, CON(C) — Fraser Health End-of-Life Care Program

James Voth — Intogrey Research and Development

Jean Warneboldt, MD, CCFP — Fraser Health End-of-Life Care Program

Project Contact: Richard Sawatzky — rick.sawatzky@twu.ca

CAT 2014-17

Key Findings for Families

Electronic tools, such as the electronic quality of life assessment and practice support system (QPSS) can help healthcare providers understand the needs of patients faced with chronic life-limiting illnesses who choose to live at home.

Older patients faced with chronic life-limiting illnesses and their family/caregivers in palliative homecare were mostly happy with the electronic tool, a QPSS to communicate their needs with their healthcare providers
Palliative homecare providers saw potential benefits of using the tool, but the actual use in their day-to-day practice was very limited mostly because of the perceived challenges to using the tool, and their need for more education and resources

The electronic QPSS can be used by clinicians to obtain important information from older adults with chronic and life-limiting illnesses and their family/caregivers about their healthcare needs and concerns.

In the context of palliative homecare, this research provides important information related to the positive perceptions of these patients and family caregivers regarding the use of the electronic system and the need for having routine QOL assessment

About This Study

Barriers and facilitators to the use of the QPSS, an electronic (tablet based) embedded with standardized QOL assessment tools, in practice were evaluated
Focus groups with clinicians, patients and family members/caregivers were conducted to generate input on the usability and integration of the QPSS in palliative homecare settings

Key Findings for Policy

Electronic systems, such as the electronic quality of life assessment and practice support system (QPSS), can help healthcare providers understand the needs of patients faced with chronic life-limiting illnesses who choose to remain in home.

Older adults who have life-limiting illnesses and their family/caregivers reported positively on the opportunity to provide information about their QOL needs and their experiences with the care they received through the use of standardized QOL assessment instruments
Educational and supportive strategies are needed to address barriers regarding the skills, attitudes and resources for homecare nurses to successfully integrate an electronic systems, such as the QPSS in clinical practice

The electronic QPSS can be used by clinicians to obtain important information from older adults who have advancing chronic and life limiting illnesses and their family caregivers regarding their healthcare needs and concerns.

This research confirms the needs of these patients and their family members/caregivers for QOL assessment in their routine care, identifies the perceived challenges of palliative homecare clinicians related to the integration of the QPSS in their routine practice and recommends educational and supportive strategies for enhancing clinical competency among clinicians pertaining to the skills, attitudes and resources

Why This Study was Needed

Increasingly, older adults who have advancing chronic and life-limiting illnesses choose to live at home, thus relying heavily on homecare nursing for their complex healthcare needs. To ensure that homecare services address their concerns and needs, it is imperative that the QOL and the healthcare experiences of this population as well as their family caregivers (FCGs) are assessed routinely and comprehensively. The use of electronic standardized assessments tools can help make these patients’ and their family caregivers’ concerns more visible to healthcare professionals. In the context of palliative homecare practice, however, such use remained largely unknown. This study examined the integration of the QPSS as practice support tools in palliative homecare practice.

Study Summary

Barriers and facilitators to the use of the QPSS in practice were evaluated
Focus groups and interviews with key stakeholders (clinicians, patients, family members/caregivers and healthcare administrators) were conducted to generate input on the usability and integration of the QPSS in routine practice
Over 80 participants, including patients and family caregivers, were assessed quantitatively by using the QPSS for their QOL. Interviews with selected patients and family members were conducted to understand their perception and experience pertaining to the use of the QPSS. The uptake of the QPSS in routine palliative homecare practice was very limited due to clinicians’ perceived challenges for integrating and needs to more education and support on the utilization of standardized QOL assessment tools
Recommendations have been made to address challenges to successful implementation of the QPSS in palliative homecare practice, including institutional environment, the local team context, the perspectives and experiences of individual clinicians using this system and the infrastructural utilization of technology in community settings

Key Findings for Researchers

The electronic quality of life assessment and practice support system (QPSS) can be used by clinicians to obtain important information from older adults and their family caregivers regarding their healthcare needs and concerns. This research provides an essential understanding of the needs of the patient and their family members/caregivers and end-users of the assessment system in the context of home-based palliative care.

Quantitative QOL assessments and qualitative interviews with patients and (family caregivers) FCGs reveal theirpositive perceptions on using the QPSS to assess their QOL routinely and to confirm their needs for integrating such electronic system in their care
The very limited uptake of the QPSS by clinicians in their routine practice identifies a number of factors that influenced successful implementation of the QPSS. These include clinicians’ perceived challenges pertaining to implementation of the QPSS and their needs to more education and support
The outcomes evaluation could not be completed as planned due to limited uptake of the QPSS by clinicians

Why This Study was Needed

Increasingly, older adults who have chronic and life-limiting illnesses choose to live at home, thus relying heavily on homecare nursing for their complex healthcare needs. To ensure this population receives the best care that addresses their needs, it is important that the QOL of these patients and family caregivers (FCGs) is routinely measured and addressed. The use of electronic standardized QOL assessment tools can help make the concerns of patients and FCGs more visible to the healthcare professionals. However, the use and effect of such electronic systems in palliative homecare remains unknown.

How This Study Addresses the Gap

Barriers and facilitators to the use of the QPSS, an electronic (tablet based) embedded with standardized QOL assessment tools, in practice were evaluated
The input of key stakeholders, including clinicians, patients, FCGs and healthcare administrators on the use of the QPSS in palliative healthcare setting were generated through focus groups and interviews
Over 80 older patients and family caregivers participated in consecutive QOL assessments for five months and provided important information pertaining to the use of the QPSS in assessing their QOL

Future Research

Focus to address challenges to successful implementation of the QPSS in palliative homecare practice, including institutional environment, the local team context, the perspectives and experiences of individual clinicians using this system and the infrastructural utilization of technology in community settings
Focus to develop clinical practice competency on the use of the QPSS. Specific components of such competency have been proposed
Focus to provide education and resources to healthcare providers in the palliative home care setting in relation to the use of standardized QOL assessment tools in practice
The findings of this study have informed a multisite randomized controlled trial to evaluate the outcomes of using the QPSS

Presentations

Presentations

Sawatzky, R., Krawczyk, M. (March 2016). Negotiating tensions in supporting clinicians to provide person-centered palliative care. University of Gothenburg Centre for Person-Centred Care (GPCC).

Laforest, E., Sawatzky, R., Schick-Makaroff, K., Stajduhar, K., Krawczyk, M., Wang, R., Hilliard, N., Neufeld, C., Lett, J., Tayler, C., Voth, J., Cohen, R. (March 2016). Desirable features of a Quality of Life Assessment and Practice Support System (QPSS) in Palliative Acute and Home Care. 21st International Congress on Palliative Care.

Sawatzky, R. (November 2015). Integrating a quality of life assessment and practice support system in palliative home care. TVN Mindmerge Victoria.

McLeod, B., Sawatzky, R. (June 2015). Enhancing the voices of palliative homecare clients and their families. Fraser Health Department of Evaluation and Research Services 10th Annual Research Week.

Webinars

CFN Webinar (November 22, 2017): Introducing electronic quality of life assessments in hospital palliative care: A micro-meso-macro framework