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The Value of the Patient Voice in Chronic Care Models April 5, 2019

Presentation Agenda





Background & Project Scope


Quantitative Measurement Tools

Qualitative Measurement Tools





Mixed Methods Tools


The Caregiver

Summary & Citations

Meet Our Team Fourth year community engaged learning project

Kayla Benjamin

Kate MacArthur

Priyanka Singh

Multidisciplinary academic and work backgrounds Expert guidance from Karen Unsworth and Sue Hocking

Frank Ye

Jodi Yip

The Usual Care Pathway Exercise









Registered Dietician

RN/Nurse Practitioner

Diabetes Program RN/Nurse Practitioner


Cardio Rehab Registered Dietician

Rehab Therapist


Integration and Care Redesign Exercise









Registered Dietician

RN/Nurse Practitioner

Diabetes Program RN/Nurse Practitioner


Cardio Rehab Registered Dietician

Rehab Therapist


Importance of the Patient Voice There is substantial evidence supporting the value in integrating the patient narrative into the healthcare delivery system when providing chronic care treatment.

Patient Satisfaction • Evaluated through surveys and questionnaires • Better understanding of care pathway • Patient autonomy

Enhanced Dialogue • Improved physician – patient communication • Enhanced information provided to patients • Collaboration in healthcare delivery

Treatment Adherence • Encourages questions and addresses issues sooner • Patients report better understanding of their healthcare plan

Patient Empowerment • Reduced dependence on healthcare resources • More positive beliefs about the disease and better self-management

The Project Scope K e y Ta k e a w a y s

Purpose Identify appropriate strategies to capture and assess patient and caregiver preferences with respect to a novel shared care model for chronic disease management

Impact • • •

Clinical care knowledge translation Highlight and address aspects of the care experience needing improvement Monitor performance in meeting patient experience goals in delivery of care

• • •

St Joseph’s Hospital should use a mixed methods approach (surveys and focus groups) to gather patient feedback regarding their experience of the integrated chronic care system Caregivers should be incorporated into the feedback loop because of their importance in the care delivery pathway Inclusion of the patient voice in chronic care leads to patient empowerment and improved health outcomes Many feedback measures exist but the optimal tools must be selected for specific organizations

Project Methodology 1




Comprehensive Literature Review

Synthesis of the Findings

Critical Analysis of the Results

Knowledge Translation

• Evaluated each measurement tool for its application to St. Joseph’s Hospital • Developed recommendations supported by evidence

• Compiled findings into a literature review document • Generated a presentation with a focus on promising methods for gathering patient feedback

• Defined search terms: patient or caregiver experience/ perspective/ preference/satisfaction • Searched databases: MEDLINE, EMBASE, and CINAHL

• Extracted distinct measurement tools from the literature • Divided tools into distinct categories for comparison

The Patient Experience

Presentation Title Here

Quantitative Measurement Tools

PACIC A 20-item questionnaire completed by chronic care patients. The tool measures patient perception of care and how closely their care aligns with the Chronic Care Model. May be divided into the “5A” subscales: Assess Advise Agree Assist Arrange

• Effective tool for capturing how well chronic care models have been implemented • Captures holistic aspects of patient care extending beyond the clinical setting • High internal consistency (reliability) • Traditionally high response rate due to its simplicity • Limitation is that it may not be generalizable across populations with lower health literacy

IEXPAC An 11-item questionnaire that aims to measure selfreported patient experience of integrated chronic care. Patients rank each statement on a 5-point Likert scale. Focuses on assessing interactions between patient and healthcare teams.

• Designed to measure patient experience and incorporates a broader view of care • Focuses on interactions between patients and the health care system as opposed to individual providers • Limitation is that scores reported may be influenced by the severity of a patient’s illness rather than the quality of healthcare received • Relatively new measure so it requires further study to justify validity

Presentation Title Here

Qualitative Measurement Tools

Focus Groups A diverse group of patients assembled to participate in a guided discussion typically facilitated by a moderator. Responses are recorded and transcribed for future analysis.

• Allows for patients to express feedback in their own words • In some cases, focus groups can elicit comments which can generate novel themes that researchers had not previously considered • Requires substantial resources, experienced moderator(s), and a basic level of patient literacy • Must design questions effectively to generate relevant discussions

Presentation Title Here

Mixed Methods Measurement Tools

Mixed Methods A method of conducting research involving collecting, analyzing, and integrating quantitative and qualitative methods research.

• Enables researchers to uncover aspects of the patient voice that may be neglected by one method alone • Surveys and guided discussions used in conjunction provided numerical data for statistical analysis and identified themes outside the scope of the original survey • PACIC and telephone interviews used together allow researchers to ask patients follow up questions regarding their perception of care • Substantial resource and expertise requirement

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Our Recommendation

Our Recommendation Given the synergistic effect of using mixed methods, as well as the capabilities of St. Joseph’s Hospital, our team recommends a combination solution to gather and distill the patient voice in the integrated chronic care model.


Focus Groups

Holistic Feedback

Quantitative data for the purposes of conducting statistical analysis and gathering baseline information.

Guided discussions to allow patients to open up and share their own perspectives, in the hopes of identifying new themes.

Mixed methods approach to engaging with patients and eliciting feedback in a way that can monitor current performance and inform future changes.

The Caregiver Experience

FROM16 A 16-item instrument assessing burden experience by patient family members.

Ranking System 0

Not At All


A little


A Lot

• Short mean completion time allowing for fast quantitative evaluation of impact of patient illness on family • Can be implemented in clinical situations to improve awareness of disease impact on caregivers • Valuable in facilitating discussion to gather the caregiver perspective • Important tool to assess caregiver burden

Recommendation Summary Patient Survey • A modified PACIC survey should be implemented to gather quantifiable data • Modifications include: 5A categories, tailored to health care teams, and incorporate healthcare information and communications technology

Caregiver Focus Group

• In order to monitor performance and illuminate novel themes regarding the progression of the chronic care pathway • Allow for richer holistic discussion by empowering patients to share their own opinions in a less restrictive setting

FROM16 • Caregivers are a vulnerable population and would appreciate check-ins on a regular cadence • Implement the tool during patient check-ups for clinicians to quickly look over and assess caregiver well-being • Relatively low-investment for rewarding feedback

Acknowledgements Our team would like to thank the following people and organizations for their assistance in the completion of this project. We could not have done it without you.

Schulich School of Medicine & Dentistry Sue Hocking Dr. Sarah McLean Western University Karen Unsworth

St. Joseph’s Hospital

Works Cited Aung, E., Ostini, R., Dower, J., Donald, M., Coll, J. R., Williams, G. M., & Doi, S. A. R. (2016). Patient Assessment of Chronic Illness Care (PACIC) in Type 2 Diabetes: A Longitudinal Study. Evaluations and Health Professions, 39(2), 185–203. Gugiu, P. C., Coryn, C., Clark, R., & Kuehn, A. (2009). Development and evaluation of the short version of the Patient Assessment of Chronic Illness Care instrument. Chronic Illness, 5(4), 268-276. doi:10.1177/1742395309348072 Golics, C. J., Basra, M. K., Finlay, A. Y. & Salek, S. (2014). The development and validation of the family reported outcome measure (FROM-16) to assess the impact of disease on the partner or family member. Quality of Life Research, 23, 317-326. doi: 10.1007/s11136-013-0457-y Johnston, S., Irving, H., Mill, K., Rowan, M. S., & Liddy, C. (2012). The patient’s voice: An exploratory study of the impact of a group self-management support program. BMC Family Practice, 13(1). doi:10.1186/1471-2296-13-65 Kohler, G., Sampalli, T., Ryer, A., Porter, J., Wood, L., Bedford, L., . . . Rivoire, E. (2017). Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes. International Journal of Health Policy and Management, 6(11), 661-668. doi:10.15171/ijhpm.2017.27 Mellum, J. S., Martsolf, D., Glazer, G., Martsolf, G., & Tobias, B. (2018). A mixed methods study of the experience of older adults with multimorbidity in a Care Coordination Program. International Journal of Care Coordination, 21(1-2), 36-46. doi:10.1177/2053434518762593 Mira, J. J., Nuño-Solinís, R., Guilabert-Mora, M., Solas-Gaspar, O., Fernández-Cano, P., González-Mestre, M. A., . . . Río-Cámara, M. D. (2016). Development and Validation of an Instrument for Assessing Patient Experience of Chronic Illness Care. International Journal of Integrated Care,16(3). doi:10.5334/ijic.2443 Noël, P. H., Parchman, M. L., Palmer, R. F., Romero, R. L., Leykum, L. K., Lanham, H. J., . . . Bowers, K. W. (2014). Alignment of patient and primary care practice member perspectives of chronic illness care: A cross-sectional analysis. BMC Family Practice, 15(1). doi:10.1186/1471-2296-15-57 Orozco-Beltrán, D., Toro, J. D., Galindo, M. J., Marín-Jiménez, I., Casellas, F., Fuster-Ruizdeapodaca, M. J., . . . Cea-Calvo, L. (2018). Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale. The Patient - Patient-Centered Outcomes Research. doi:10.1007/s40271-018-0345-1 Schmittdiel, J., Mosen, D. M., Glasgow, R. E., Hibbard, J., Remmers, C., & Bellows, J. (2007). Patient Assessment of Chronic Illness Care (PACIC) and Improved Patient-centered Outcomes for Chronic Conditions. Journal of General Internal Medicine, 23(1), 77-80. doi:10.1007/s11606-007-0452-5 Simonsen, N., Koponen, A. M., & Suominen, S. (2018). Patients ’ assessment of chronic illness care: a validation study among patients with type 2 diabetes in Finland. BMC Health Services Research, 18, 1–10. Tabrizi, J. S., Wilson, A. J., Coyne, E. T. & O'Rourke, P. K. (2007). Clients' perspective on service quality for type 2 diabetes in Australia. Australia and New Zealand Journal of Public Health, 31, 511-5. doi: 10.1111/j.1753-6405.2007.00134.x Thomas, J., Iyer, N. N., & Collins, W. B. (2014). Associations between Perceived Chronic Care Quality, Perceived Patient Centeredness, and Illness Representations among Persons with Diabetes. Journal For Healthcare Quality, 36(5), 50-59. doi:10.1111/jhq.12077

Appendix Slides

DTSQ Notable Mentions: Patient Tools

Questionnaire composed of eight questions scored by patients on a Likert scale from 0 (very dissatisfied) to 6 (very satisfied). Two factors are addressed, the first assessing treatment satisfaction with 6 questions while the second factor consists of two questions assessing the burden from hyper and hypoglycemia.

Specifically captures diabetes treatment satisfaction

May capture aspects of treatment beyond clinical parameters

Can be used in conjunction with multiple other questionnaires



Generic tool containing five dimensions of quality of life: mobility, self-care, usual activities, pain and discomfort, and anxiety and depression. Each dimension contains three levels - no limitations, some limitations, and severe limitations.

A tool designed to measure the general psychological wellbeing of patients. The questionnaire consists divides 12-items into three subscales: negative well-being, energy, and positive well-being. Each item is scored from 0 to 3, with possible totals ranging from 0 (worst) to 36 (best).

Can be transformed into Quality of Life Years (QALY) score for economic valuation

Useful assessment of negative well being (well-rounded tool)

Less time to completed compared to other instruments

Short length and easy to fill out which increases response rates

Can be used in conjunction with other feedback tools


Phone Survey

A 20-item scale with each item representing a diabetesrelated issue. Respondents address each item on a five-point Likert Scale (0 being ‘not a problem’ to 4 being a ‘serious problem’). Scores range from 0-80 and are converted to a 0100 standardized score, with 100 reflecting greater distress.

A series of questions or statements administered by an interviewer through conversation over the telephone. Patients are typically asked to rank statements on a numerical scale indicating their agreement or disagreement.

High internal consistency and construct validity

Patients can provide feedback in a comfortable setting

Limited by its narrow application

Opportunity for patients to clarify points of uncertainty

Potential for response bias due to the lag between care and survey

Direct Access


An alternative to the classical approach to follow up appointments and treatments for patients with chronic illness and favours patient-initiated reviews. Consists of three main components: small educational sessions, telephone line for patient messages, as well as access to an appointment with a specialist or a nurse within ten days.

In-person interviews are conducted by researchers asking open-ended questions about patients’ experiences and audiorecording responses.

Open phone helpline provides an outlet for patient questions

Effective at getting an in-depth perspective

Increased patient satisfaction by improving accessibility

Requires good patient-physician rapport to generate discussion

Steep learning curve and requires substantial resources

Carefully consider location of interview for patient comfort

WHOQOL-BREF Notable Mentions: Caregiver Tools

A questionnaire developed through the Programme on Mental Health World Health Organization Geneva used for measuring quality of life. The assessment measures four domains: physical, psychological, social relationships and environment with 26 questions.

Caregivers are a particularly vulnerable population

Provides caregiver information over the course of a patient treatment Allows for creation of quality of life profiles for each caregiver

Profile for Frank Ye

The Value of Patient Voice in Chronic Care Models  

The Value of Patient Voice in Chronic Care Models