Supporting older people withrheumatic and musculoskeletal diseases

in daily life

Erika Mosor & Tanja StammInstitute of Outcomes Research,

Medical University of ViennaSARAA Congress, 2019

Disclosure statement.The authors have nothing to declare.

Some numbers.

European Science Foundation, 2006; He et al., 2016; van der Heijde et al., 2018, WHO, 2018

617million 65+

in 2015

200RMDs

1.6billion 65+

in 2050

People 80+

expected to

more than triple

between 2015

and 2050

¼of the EU

population

By 2050,

130

million

with OA

worldwide

40

million

severly

disabled

Background I.

▪ Over the last years, research and innovation in rheumatic and musculoskeletal diseases has produced significant results that have positively impacted on the wellbeing of people with RMDs.

▪ Older people with RMDs often experience problems in daily life.(Backman, 2004; Gibbs, 2011; Håkansson, Dahlin‐Ivanoff & Sonn, 2006; Law, 2002; Meyer, 1977; Orem, 1985; Stamm et al., 2009; Wilcock, 2006; Wagman, Hakansson, & Bjorklund, 2012 Yerxa, 1990)

− Other chronic conditions

− Decreased physical and sensory functioning (such as poor vision and hearing)

− Problems in carrying out everyday activities

− Potential cognitive decline/impairment

− Medication side effects and/or interactions

− Loss of valued life roles

− Inactivity

− Fear of falling

− Malnutrition

− …

Background II.

▪ When looking at the clinical routine we also know, that currently used measures and

treatments may not capture all that matters to old people with RMDs.

▪ Patient Reported Outcome Measures (PROMs) capture patients’ perspectives on

how illness or care impact their health and wellbeing (Deshpande et al., 2011)

− Care planning

− Shared decision-making

− Person-centred care

− Disease management

Concept of occupational balance.

▪ Used in occupational therapy and occupational science

“… implies experiencing the right amount and variation of everyday occupations that

are meaningful, provide fulfillment, and engage people in everyday life with others.”

▪ Balance between occupations

you want to do or have to do in daily life

▪ Older people with RMDs often experience problems

in the areas of:− Self-care

− Productivity

− Leisure

− Rest and sleep

Dür et al. 2014, 2015, 2016; Gibbs & Klinger, 2011; Håkansson, et al., 2006;Stamm et al., 2007, 2009, 2011; Wilcock, 2006; Yerxa, 1990

“Multi-component” treatment provided by a multi-professional team

Assessing person’s skills,

task performance,

psychosocial and living

environmentEmpowering people

by providing interventions,

preventive strategies and

modifications

related to the person, tasks

and environment, and

educating them

Looking at the

patientusing the first

impression

Setting goals in a

collaborative way

Evaluating and

adapting interventions,

preventive strategies

and modifications

Opinion of speaker, 2019

Looking at the patient - using the first impression

▪ Use the first impression

− Patient's general appearance

− Mobility (use of any assistive device)

− Standing balance

− Sitting down in a controlled way

− Reaching the neck, the back, the toes

− Temporal and local orientation

− Reading and writing

− Getting up in a safe way

Opinion of speaker, 2019

Evidenz für sturzpräventives Arbeiten, Erika Mosor 2018

Standing up –not that easy!

Visiting Bara

Assessing person’s skills, task performance, psychosocial and living environment.

▪ Use all clinical, functional and patient-reported outcome measures that help to get “the big picture”.

▪ Inclusion of patient-reported outcome measures might help to better understand the challenges that older people with RMDs are facing.

▪ Assessing PROMs on a regular basis

▪ PROMs used in older people with RMDscould include subjective reports on:− Health status

− Quality of life

− Functioning in daily life

− Pain

− Fatigue

− Fear of falling

− …

Che et al., 2015; Coates, 2015; Hendrikx et al., 2016; Stamm et al., 2007, 2009, 2011

Setting goals in a collaborative way.

▪ The process of setting goals should be a collaborative process between the

person with RMD and the health professional(s)

Opinion of speaker, 2019

Empowering people by providing interventions, preventive strategies

and modifications related to the person, tasks and environment.

▪ Older people with RMDs need access to rheumatology services → the right care at

the right time

▪ Various targeted interventions (pharmacological AND non-pharmacological) should

focus on:

− Reducing the impact of the disease(s)

− Preventing secondary/further co-morbidities

− Maintaining independence as long as possible

− And promoting health and well-being

Burgess-Limerick et al., 2018; Cichocki et al., 2015; Clemson et al., 2004; Gibbs et al., 2012; Gillespie et al., 2012; Leland et al., 2012;

Madureira et al., 2007; Niedermann et al., 2010; Painter et al., 2012; Pighills et al., 2011; Steultjens et al., 2004; Zasadzka et al., 2015

Im persönlichen UmfeldTraining of activities of daily living and re-organizing tasks.

Cichocki et al., 2006

Cichocki et al., 2006

Im persönlichen UmfeldActivity-based falls prevention in group or individual settings.

Cichocki et al., 2006

Im persönlichen UmfeldEducation and risk management.

Cichocki et al., 2006

Im persönlichen UmfeldHome- and environment modification.

Clemson et al., 2004; Gillespie et al., 2012; Pighills, et al., 2011; Salkeld et al., 2000; Sherrington, et al., 2011

Im persönlichen UmfeldConsultation on assistive devices, supply and training.

− Consultation on assistive devices

− Supply

− Training!!!

Cichocki et al., 2006

Evaluating and adapting interventions, preventive strategies and

modifications.

▪ As an older person, the necessary daily activities, and/or the environment might

change over time, it is of great importance to evaluate the interventions, the

preventive strategies and modifications which have been made on a regular basis.

▪ If necessary, adjustments should be made subsequently.

Opinion of speaker, 2019

https://pixabay.com/de/spinage-fernglas-schauen-sp%C3%A4hen-1514261/

https://pixabay.com/de/spinage-fernglas-schauen-sp%C3%A4hen-1514261/

Thank you!Let’s keep in touch.

Institute of Outcomes Research, Medical University of Vienna, Austria

erika.mosor@meduniwien.ac.attanja.stamm@meduniwien.ac.at

Key references I.

Backman, C. L. (2004). Occupational balance: Exploring the relationships among daily occupations and their influence on well-being. Canadian Journal ofOccupational Therapy, 71(4), 202-209.

Che H, Etcheto A, Dernis E, Nataf H, Boumier P, Breuillard P. (2015). Evaluation of collected outcome measures in axial spondyloarthritis in daily-care rheumatology settings: the experience of the RHEVER network. Clin Exp Rheumatol. 33(6):851-857.

Cichocki, M., Quehenberger, V., Zeiler, M., Adamcik, T., Manousek, M., Stamm, T., & Krajic, K. (2015). Effectiveness of a low-threshold physical activity intervention in residential aged care – results of a randomized controlled trial. Clin Interv Aging, 885. doi:10.2147/cia.s79360

Clemson, L., Cumming, R. G., Kendig, H., Swann, M., Heard, R., & Taylor, K. (2004). The effectiveness of a community-based program for reducing the incidence of falls in the elderly: A randomized trial. Journal of the American Geriatrics Society, 52(9), 1487-1494.

Coates L. (2015). Outcome Measures in Psoriatic Arthritis. Rheum Dis Clin North Am. 41(4):699-710.

Deshpande, P. R., Rajan, S., Sudeepthi, B. L., & Abdul Nazir, C. P. (2011). Patient-reported outcomes: A new era in clinical research. Perspectives in Clinical Research, 2(4), 137-144. doi:10.4103/2229-3485.86879

Dür, M., Steiner, G., Fialka-Moser, V., Kautzky-Willer, A., Dejaco, C., Prodinger, B., . . . Stamm, T. A. (2014). Development of a new occupational balance-questionnaire: Incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument. Health Qual Life Outcomes, 12(45).

Dür, M., Steiner, G., Stoffer, M. A., Fialka-Moser, V., Kautzky-Willer, A., Dejaco, C., . . . Stamm, T. A. (2016). Initial evidence for the link between activities and health: Associations between a balance of activities, functioning and serum levels of cytokines and C-reactive protein. Psychoneuroendocrinology, 65, 138-148.

Dür, M., Unger, J., Stoffer, M., Drăgoi, R., Kautzky-Willer, A., Fialka-Moser, V., . . . Stamm, T. (2015). Definitions of occupational balance and their coverage by instruments. The British Journal of Occupational Therapy, 78(1), 4-15.

European Science Foundation (2006). Rheumatic Diseases – a Major Challenge for European Research and Health Care; European Science Foundation Policy Briefing, June.

Gibbs, L. B., & Klinger, L. (2011). Rest is a meaningful occupation for women with hip and knee osteoarthritis. OTJR: Occupation, Participation and Health, 31(3), 143-150.

Gillespie, L. D., Robertson, M. C., Gillespie, W. J., Sherrington, C., Gates, S., Clemson, L. M., & Lamb, S. E. (2012). Interventions for preventing falls in older people living in the community. The Cochrane Database of Systematic Reviews, 9.

Key references II.

Håkansson, C., Dahlin‐Ivanoff, S., & Sonn, U. (2006). Achieving Balance In Everyday Life. Journal of Occupational Science, 13(1), 74-82.

He, W., Goodkind, D., & Kowal, P. R. (2016). An aging world: 2015: United States Census Bureau Washington, DC.

Hendrikx J, de Jonge MJ, Fransen J, Kievit W, van Riel PL. (2016). Systematic review of patient-reported outcome measures (PROMs) for assessing disease activity in rheumatoid arthritis. RMD open. 2(2):e000202.

Leland, N. E., Elliott, S. J., O’Malley, L., & Murphy, S. L. (2012). Occupational therapy in fall prevention: Current evidence and future directions. American Journal of Occupational Therapy, 66(2), 149-160.

Madureira, M. M., Takayama, L., Gallinaro, A., Caparbo, V., Costa, R., & Pereira, R. M. (2007). Balance training program is highly effective in improving functional status and reducing the risk of falls in elderly women with osteoporosis: a randomized controlled trial. Osteoporosis International, 18(4), 419-425.

Meyer, A. (1922/1977). The philosophy of occupation therapy. Reprinted from the archives of occupational therapy, volume 1, pp. 1-10, 1922. Am J Occup Ther, 31.

Niedermann, K., Hammond, A., Forster, A., & de Bie, R. (2010). Perceived benefits and barriers to joint protection among people with rheumatoid arthritis and occupational therapists. A mixed methods study. Musculoskeletal Care, 8(3), 143-156.

Orem, D. E. (1985). A concept of self‐care for the rehabilitation client. Rehabilitation nursing, 10(3), 33-36.

Painter, J. A., Allison, L., Dhingra, P., Daughtery, J., Cogdill, K., & Trujillo, L. G. (2012). Fear of falling and its relationship with anxiety, depression, and activity engagement among community-dwelling older adults. Am J Occup Ther, 66(2), 169-176. doi:10.5014/ajot.2012.002535

Pighills, A. C., Torgerson, D. J., Sheldon, T. A., Drummond, A. E., & Bland, J. M. (2011). Environmental assessment and modification to prevent falls in older people. Journal of the American Geriatrics Society, 59(1), 26-33.

Rucker, D., Rowe, B., Johnson, J., Steiner, I., Russell, A., Hanley, D., Maksymowych, W., & Morrish, D. (2006). Educational Intervention to Reduce Falls and Fear of Falling in Patients after Fragility Fracture: Results of a Controlled Pilot Study. Preventive Medicine, 42, 4, 316-319.

Schepens, S., Ananda, S., Painter, J. A., & Murphy, S. L. (2012). Relationship between fall-related efficacy and activity engagement in community-dwelling older adults: A meta-analytic review. The American Journal of Occupational Therapy.: Official Publication of the American Occupational Therapy Association, 66(2), 137-148.

Key references III.

Sherrington, C., Tiedemann, A., Fairhall, N., Close, J. C., & Lord, S. R. (2011). Exercise to prevent falls in older adults: An updated meta-analysis and best practice recommendations. New South Wales Public Health Bulletin, 22(3-4), 78-83.

Silsupadol, P., Shumway-Cook, A., Lugade, V., van Donkelaar, P., Chou, L. S., Mayr, U., & Woollacott, M. H. (2009). Effects of single-task versus dual-task training on balance performance in older adults: A double-blind, randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 90(3), 381-387.

Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G. (2007). Concepts important to persons with systemic lupus erythematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 57(7):1287-1295.

Stamm, T. A., Lovelock, L., Stew, G., Nell, V., Smolen, J., Machold, K., . . . Sadlo, G. (2009). I have a disease but I am not ill: a narrative study of occupational balance in people with rheumatoid arthritis. OTJR, 29.

Stamm TA, Mattsson M, Mihai C, Stocker J, Binder A, Bauernfeind B. (2011). Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries. AnnRheumDis. 70(6):1074-1079.

Steultjens, E. M., Dekker, J., Bouter, L. M., van Schaardenburg, D., van Kuyk, M. A., & van den Ende, C. H. (2004). Occupational therapy for rheumatoid arthritis. Cochrane Database Syst Rev(1), CD003114. doi:10.1002/14651858.CD003114.pub2

van der Heijde, D., Daikh, D. I., Betteridge, N., Burmester, G. R., Hassett, A. L., Matteson, E. L., . . . Lakhanpal, S. (2018). Common language description of the term rheumatic and musculoskeletal diseases (RMDs) for use in communication with the lay public, healthcare providers and other stakeholders endorsed by the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR). Ann Rheum Dis, 77(6), 829-832. doi:10.1136/annrheumdis-2017-212565

Wagman, P., Håkansson, C., & Jonsson, H. (2015). Occupational Balance: A Scoping Review of Current Research and Identified Knowledge Gaps. Journal of Occupational Science, 22(2), 160-169.

Wilcock, A. A. (2006). An occupational perspective of health. Thorofare, NJ: SLACK.

Yerxa, E. J. (1990). An Introduction to Occupational Science, A Foundation for Occupational Therapy in the 21st Century. ohc Occupational Therapy in Health Care, 6(4), 1-17.

Zasadzka, E., Borowicz, A. M., Roszak, M., & Pawlaczyk, M. (2015). Assessment of the risk of falling with the use of timed up and go test in the elderly with lower extremity osteoarthritis. Clin Interv Aging, 10, 1289-1298. doi:10.2147/cia.s86001

World Health Organisation. Priority diseases and reasons for inclusion. Osteoarthritis. Available at: https://www.who.int/medicines/areas/priority_medicines/Ch6_12Osteo.pdf?ua=1 [last assessed 4th of March, 2019]

Assessments.

Pain scales: VAS and numeric rating scale (NRS)

Patient Global Assessment (PGA): VAS and numeric scale

HAQ-DI health assessment questionnaire assessing functional disability

BASFI Bath Ankylosing Spondylitis Functional Index

FACIT assessing fatique

SF36/SF-21 QoL/health status

FES-I Falls efficacy scale international - to assess fear of falling in mainly community-dwelling older population.

TUG The Timed Up and Go test is used to assess a person's mobility and requires both static and dynamic balance. It uses the time that a person takes to rise from a chair, walk three meters, turn around, walk back to the chair, and sit down. During the test, the person is expected to wear their regular footwear and use any mobility aids that they would normally require

Erika Mosor, OR Breakfast 2018