The Canadian Landscape of PaAent Reported Outcome and Experience Measures. Santana MJ, MPharm, PhD October 17, 2016, Amsterdam

Transcription

1 The Canadian Landscape of PaAent Reported Outcome and Experience Measures Santana MJ, MPharm, PhD October 17, 2016, Amsterdam

2 Canada & Netherlands: The Tulip Legacy

3 Outline Overview -- Na+onal strategy supported by Canadian Ins+tute for Health Informa+on (CIHI) PREMs PROMs Big Data ini+a+ve Examples Specific applica+ons HLTx CCO

4 NaAonal IniAaAve - CIHI CIHI is an independent, not-for-profit corpora+on funded by federal, provincial and territorial governments. It provides essen+al data on Canada's health system and the health of Canadians. The Canadian Ins+tute for Health Informa+on (CIHI) has taken a leadership role and convening stakeholders to develop standardized approaches for pa+ent reported measures

5 NaAonal IniAaAve - Challenges The diversified approaches to PROMs and PREMs in Canada across regions and jurisdic+ons The use of different data collec+on methods, +ming to administer ques+onnaires, sample size, and response rates

6 NaAonal IniAaAve - Response 1. Development of a pan-canadian acute care inpa+ent experiences survey -- the Canadian Pa+ent Experiences Repor+ng System (CPERS) to collect PREMs data for inpa+ents visits. 2. Availability of Data -- Data at CIHI are used for the Ministry reports. Researchers and the public can use the same data under a specific request. 3. Public access -- Data are publicly available without any iden+fier informa+on.

7 Pa+ent-Reported Experience Measures (PREMs) 7

8 PREMs: The Canadian Landscape 8

9 PREMs Acute InpaAent Care In 2011 CIHI led the development of a pan-canadian acute care experience survey and data collec+on system Developed the Canadian Pa+ent Experiences Survey Inpa+ent Care (CPES-IC) and Canadian Pa+ent Experiences Repor+ng System (CPERS) 9

10 Canadian PaAent Experiences Survey InpaAent Care (CPES-IC) Developed through pan-canadian collabora+on QuesAons 22 ques+ons from Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) 19 addi+onal ques+ons for the Canadian context 7 ques+ons for demographic informa+on Cogni+ve and pilot tests completed in 3 provinces, in English and French Admission and discharge experience Informa+on provided during admission and discharge Communica+on - with care providers - about medica+ons Responsiveness of staff Pain control Measurement Themes Internal coordina+on Involvement in decision-making Timeliness of tes+ng Emo+onal support Physical environment (cleanliness, quietness) Overall and outcome ra+ngs 10

11 Canadian PaAent Experiences ReporAng System (CPERS) Developed through pan-canadian collaboraaon 5 implemen+ng jurisdic+ons: Bri+sh Columbia, Alberta, Manitoba, Ontario, New Brunswick Live as of April 2015 The system collects: Pa+ents responses to the survey ques+ons Informa+on on the methods and processes used to administer the survey Administra+ve informa+on to support submissions, analysis and repor+ng 11

12 Provincial IniAaAves AB & BC Alberta Health Services (AHS) pilot tested CPES-IC, collected through a Computer-assisted Telephone Interview up to 42 days post-discharge Results are publicly reported and internally disseminated Quan+ta+ve and qualita+ve data provide prac+cal support for an effec+ve use of data for Quality Improvement

13 PaAent experience: What s next? Ongoing collabora+on with par+cipa+ng jurisdic+ons to support implementaaon Engage stakeholders in defining future priority areas (e.g., long-term care, emergency department) Explore linking to other CIHI databases (e.g., inpa+ent outcomes) Develop strategy for public reporang involving paaents and caregivers 13

14 Pa+ent-Reported Outcome Measures (PROMs) 14

15 PROMs: The Canadian Landscape Pan-Canadian program for rou+ne collec+on of PROMs does not exist Local and regional programs Predominantly for independent research projects and pa+ent registries (e.g., hip and knee replacements, renal care) Some provincial programs Alberta: hip and knee, primary care, transplanta+on Bri+sh Columbia: emergency department, inpa+ent acute, LTC Ontario: Cancer Care, CCO 15

16 PROMs: The Canadian Landscape Some naaonal iniaaaves Strategy for Pa+ent-Oriented Research (SPOR) ini+a+ve led by the Canadian Ins+tutes of Health Research (CIHR) Sta+s+cs Canada collec+ng PROMs (Health U+li+es Index - HUI) through the Canadian Community Health Survey Canadian Partnership Against Cancer 16

17 Canadian healthcare systems goals & PROMs

18 Clinical Areas of Interest

19 PROMs in Hip & Knee Replacements Approaches to PROMs collecaon and reporang vary 19

20 NaAonal ApplicaAons

21 PROMs in PROMs TransplantaAon and PREMs and in StaAsAc Canada Canada Alberta Heart and Lung Transplant Clinic University of Alberta Hospital- HUI2, HUI3 Statistics Canada Canadian Community Health Survey HUI2, HUI3

22 NaAonal ApplicaAons

23 PROMs in Heart & Lung TransplantaAon OutpaAent Clinic University of Alberta Hospital

24 Program Overview Sources: Santana, Maria J., and David Feeny, Using the Health U+li+es Index in Rou+ne Clinical Care: Process, Feasibility, and acceptability. A Randomized Controlled Trial The Pa'ent: Pa'ent-Centered Outcomes Research, Vol. 2, No. 3, September 1, 2009, pp Santana, Maria-Jose, David Feeny, Jeffrey A. Johnson, Finlay A. McAlister, Daniel Kim, Jus+n Weinkauf, and Dale C. Lien, Assessing the Use of Health-Related Quality-of-Life Measures in the Rou+ne Care of Lung-Transplant Pa+ents. Quality of Life Research, Vol. 19, No. 3, April, 2010, pp

25 HRQL scores and FEV1% pred vs. transplant +me 4 Months 6 Months 16 Months 0.00

26 PROs in Heart and Lung Tx

27 Cancer Care Ontario ipehoc Project -- hpps://

28 ipehoc Project Overview ipehoc Goal: Develop a common and sustainable pa+ent experience measurement system applicable to all jurisdic+ons in Canada Aim 1 Implement rou+ne clinical use of pa+ent-reported measurement indicators PROs: Pain (BPI), Fa+gue (CFS), Anxiety (GAD-7) and Depression (PHQ-9) Aim 2 Engage providers in the integra+on of PROs to support communica+on with pa+ents, treatment decision-making and self-management Aim 3 Evaluate impact of ipehoc measurement system on pa+ent sa+sfac+on health care provider sa+sfac+on/ team work and health care u+liza+on Aim 4 Use knowledge exchange methods to facilitate pan-canadian uptake of the ipehoc measurement system

29 ipehoc Project Overview RouAne AdministraAon of PROMs for FaAgue, Pain, Anxiety and Depression 1. Pa+ents will check into their clinics and be instructed to complete the PROM tool by a member of the care team as part of rou+ne clinical care. 2. Project sites will use electronic ESAS-r as an ini+al distress and symptom-screening tool. 3. Pain, fa+gue, anxiety and depression PROMs will be administered based on pre-determined programmed ESAS-r score cut-offs and frequency seungs. 4. The results will be printed and summarized in a report in real +me and provided to the clinicians and/or pa+ents for review during the clinic visit

30 ipehoc Project Overview PaAent Reported Outcome Measures (PROMs) Measured from the paaent s perspecave, usually via self-report surveys ipehoc PROMs will be delivered on tablets and kiosks New PROMS will measure: o Pain (BPI) o Fa+gue (CFS) o Depression (PHQ-9) o Anxiety (GAD-7) o Quality of Life single item PaAent Reported Outcomes (PROMs) in order Edmonton Symptom Assessment System (ESAS-r) PaAent Reported FuncAonal Status (PRFS) Brief Pain Inventory (BPI) Cancer FaAgue Scale (CFS) PaAent Health QuesAonnaire (PHQ-9) Generalized Anxiety Disorder (GAD-7) EmoAonal Distress Quality of Life

31 ipehoc Project Overview EvaluaAon Measures (PaAents) Used together to assess quality of care and services from the paaent s viewpoint Captures the pa+ent s perspec+ve of what happened during their health care visit (process of healthcare) Project EvaluaAon Measures Examples: Communica+on, emo+onal support, symptoms managed to a comfortable level Used to evaluate and monitor service delivery Distributed as paper surveys Ambulatory Oncology PaAent SaAsfacAon Survey (AOPSS) PaAent PercepAon of Care Survey (PPCS) PaAent Acceptability Survey (PAS)

32 The ipehoc Report Brief Pain Inventory (BPI) PROM DescripAon Trigger Frequency InterpretaAon of Scores Brief Pain Inventory (BPI) 12 Ques+ons assessing two components of pain: severity and interference with daily ac+vi+es. ESAS Pain 4 Maximum every 7 days Higher mean score indicates greater pain intensity mild (1 4) moderate (5 6) severe (7 10) High score Interference = 5 (indicates pain that interferes with func+oning)

33 The ipehoc Report Cancer FaAgue Scale (CFS) PROM DescripAon Trigger Frequency InterpretaAon of Scores Cancer Fa+gue Scale (CFS) 15 Ques+ons evalua+ng physical, cogni+ve and emo+onal components of fa+gue. Addi+onal ques+on on interference ESAS Fa+gue 4 Maximum every 30 days 15 items and 3 subscales (physical, affec+ve, and cogni+ve) High score = 18 and above

34 The ipehoc Report EmoAonal Distress (PHQ-9 and GAD-7) PROM DescripAon #of Q s Pa+ent Health Ques+onnaire (PHQ-9) Generalized Anxiety Disorder (GAD-7) Ques+ons assessing symptoms of depression and anxiety 9 7 Trigger Frequency InterpretaAon of PHQ-9 and GAD-7 Scores ESAS Depression 2 ESAS Anxiety 3 Every 21 days PHQ-9 None = 0-4 Mild = 5-9 Moderate = Moderately Severe = Severe = GAD-7 None = 0-4 Mild = 5-9 Moderate = Severe = 15-20

35 The ipehoc Report Quality of Life PROM DescripAon Trigger Frequency InterpretaAon of Scores Quality of Life 1 Ques+ons ESAS: N/A Maximum every 30 days Scale of 1-10 How would you describe your overall Quality of Life. Output will show trend over +me.

36 The ipehoc Report ISSAC ipehoc Output

37 EducaAon Clinician EducaAon Framework MODE AUDIENCE KEY MESSAGE Pre-launch Global Educa+on Targeted PRO-Best Prac+ces in Symptom Educa+on Inter-Professional Group (60 mins) Symptom Specific Educa+on (3 modules on Pain, Fa+gue, Anxiety/ Depression) Each session will be 60 mins in length) PaAent EducaAon PROs and benefits How to interpret summary report/ scores How to integrate PROs data in the clinical encounter Person-centered communica+on and pa+ent engagement Clinical decision making symptom management Guidelines Simulated case scenario -in-person Reflec+on on prac+ce Introduce PRO and ra+onal Interpreta+on of summary report/ scores Best prac+ces/guidelines in symptom management Ac+on planning/ goal seung engagement Pa+ent ac+va+on for self-management Simulated case scenario -in-person Reflec+on on prac+ce

38 PROMs and Big Data Canada collects some of the richest administra+ve health and clinical data in the world These data will be exponen+ally increased with data integra+on through the Personal Health Portals and Electronic Medical Records (EHRs) Big data is a promising source to quan+fy pa+entcentred care using PROMs

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40 PROMs pan-canadian IniAaAve: What s next? Con+nue work with stakeholders to develop collec+on and repor+ng standards (tools, survey administra+on) for priority areas Develop criteria to priori+ze addi+onal clinical areas/sectors for PROMs Provide compara+ve reports on PROMs to support clinical and health system decision-making, including informa+on for pa+ents 40

41 Conclusions Na+onal PREMs ini+a+ve Working towards a PROMs na+onal ini+a+ve Developing a repor+ng system for Na+onal QI purposes involving pa+ents and caregivers

42 Acknowledgements CIHI -Ellis Chow and her team SPOR Alberta

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