The effectiveness of musculoskeletal patient education provided to people with lower levels of literacy: a systematic review Lowe, W., 1 Ballinger, C. 1 Nutbeam, D., 1 Russell, C., 1 Protheroe, J., 2 Lueddeke, J., 3 Armstrong, R., 1 Edwards, C., 1 Falzon, L., 4 McCaffery, K., 5 Adams, J., 1 1 University of Southampton, 2 University of Keele, 3 Brockenhurst College, 4 Columbia University, 5 University of Sydney. DOI: /acr.22085

Background: Musculoskeletal health and health literacy Individuals with chronic diseases who also have lower literacy levels have worse health outcomes and struggle to follow health care advice [1,2] People with MSK conditions are encouraged to be active partners in their health care and to adopt a range of self-management behaviours [3]. Active involvement in self-management generally leads to better health outcomes in chronic diseases [4] [1]Sheridan et al 2011 JHealthComm 16(S3);30-54 [2] Berkman et al 2011 Annals Int Med 155: [3] NICE. Rheumatoid Arthritis. National clinical guideline for management and treatment in adults. NICE Clinical Guideline [4] Bodenheimer et al 2002 JAMA, 288(19): p Poor and vulnerable bear unequal burden of chronic disease (Ref) Access to healthcare is inequitable (ref) Delivery of healthcare is inequitable(ref) Importance of delivering interventions to reduce disparity in health care and empower people to self manage their musculoskeletal health 2

Background: Musculoskeletal health and health literacy Many patients are not currently involved in their long term management to the degree that they would prefer [5] People with osteoarthritis are disproportionately represented in lower socioeconomic positions [6] Access, delivery and impact of healthcare is inequitable [7] [5] Ford, et al (2003) Health Expectations : p [6] Borkhoff et al (2011) Arthritis Care and Research 63:1: [7] Abel, T. (2008). J Epidemiol Community Health 62(7): e13

Background: Patient education in MSK Patient education is a central strategy to increase knowledge and understanding so as to enhance self-management skills [7] Education should support patients to become more confident in managing their condition [8]. However, education interventions can have different impact across populations. Less effective for people with lower health literacy [9] [7] Warsi et al., (2003) Arthritis and Rheumatism 48(8): p [8] The King's Fund, Perceptions of patients and professionals on rheumatoid arthritis care. 2009, The King's Fund London [9] Berkman et al., Agency for Healthcare Research and Quality 2011

Background: Patient education in MSK 5

What education interventions are effective for patients with arthritis and lower literacy? To improve health outcomes To increase access to health care To reduce disparity between different groups 6

Systematic review – method Electronic databases were searched from 1946 to May RCTs with primary interventions designed specifically for individuals with musculoskeletal conditions and lower levels of literacy were eligible for inclusion. The quality of the study was determined by assessing method of randomization, allocation concealment, creation and maintenance of comparable groups, blinding of patients and providers, control of confounding, and the validity and reliability of outcome measures. 7

Systematic review – method The quality of the study was determined by assessing method of randomization, allocation concealment, creation and maintenance of comparable groups, blinding of patients and providers, control of confounding, and the validity and reliability of outcome measures. 8

Systematic review – method Inclusion/exclusion criteria – PICO Cochrane review 2444 records identified – 2430 excluded 14 journal articles assessed for eligibility – 5 excluded 6 studies (9 citations) included in review 9

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Systematic review - results 3 clinical studies and 3 community based studies 3 clinical studies – Hill & Bird, 2003; Rudd et al, 2009; Walker et al, 2007 Compared two education interventions. Included plain English leaflets (drug use; general arthritis care) with or without access to an educator; Arthritis Research UK mind map 11

Systematic review – results 3 community studies – Darmawan, 1992; Goeppinger et al, 2007; Rana et al, Goeppinger et al., – self-management Arthritis Self Help Course(ASHC) vs Chronic disease Self Management Programme (CDSMP) Darmawan et al., & Rana et al.,– Arthritis Community Education (ACE) vs Control 12

Outcomes – knowledge Increase in knowledge but not across all groups – Walker et al., 2007; Hill & Bird, 2003; Darmawan et al., People with lower literacy significantly more anxious & depressed Poor reading leads to poor knowledge which associates with more anxiety and depression Illiteracy was correlated with a loss of knowledge which associates with being older 13

Outcomes – self-efficacy Arthritis Self Help Course and General Disease Self Management Programme 2.5 hrs) – at 4 and 12 months showed an increase in self-efficacy (Goeppinger et al., 2007) For African American participants the modest improvement in self-efficacy was not statistically significant for GDSMP Plain English leaflet and educator (2 sessions)– increase in self- efficacy in univariate analysis Rudd et al., 2009 Increase in self-efficacy not maintained in multivariate analysis Rudd et al.,

15 AuthorsOutcomeNumber of participants (final) Intervention Mean (SD) Control Mean (SD) Hill & Bird, 2003 Knowledge51(48) Pre-test 2.8 ± -3.5 Post-test 10.8 ± 2.03 Pre-test 2.57 ± 2.54 Post-test 9.90 ± 2.46 Walker et al, 2007 Knowledge175 (175) PKQ ± 9.12 Increase in knowledge 6.45 (CI 3.78 – 10) PKQ ± 7.96 Increase in knowledge 6.56 (CI ) Rudd et al, 2009 Self-eff 6/12 Self-eff 12/12 SF36 6/12 SF36 12/12 51 (49) 51 (48) 51 (49) 51 (48) 1.5; p = ; p = %; p = %; p = ; p = ; p = %; p = %; p = 0.11 Rana et al, 2010 Arthritis related illness Self-reported health 315 (315) Dichotomous variables

Discussion Methodological issues means that only moderate level evidence is demonstrated for the effectiveness of patient education for people with lower literacy People with lower levels of literacy under-represented in clinical models of patient education Patient education in MSK has the potential for increasing inequity in health outcomes 16

Discussion Effects of musculoskeletal patient education interventions are not equal for people with different levels of literacy. Trials of musculoskeletal patient education interventions do not tend to include a large proportion of people with lower levels of literacy. Strategies are required to recruit and engage people with lower levels of literacy into musculoskeletal patient education programmes. The internal validity of randomized controlled trials for musculoskeletal patient education is questioned when people with lower literacy levels are not included. 17

Reviewing the evidence: Health literacy, patient education and research Social science and education model Public health model Biomedical model

Reviewing quantitative evidence: Health literacy and RCTs Biomedical model focus on individual clinical and behaviour change and compliance Public health model focus on individual behaviour change and supportive environments Social science and education model focus on empowerment and context

Reflection on challenges Theoretical frame work is developing, complex and confusing RCT evidence still developing Recruitment bias & attrition Routine recording of baseline health literacy/educational level Outcome measures Short term outcomes for a chronic condition

Conclusion Health literacy is a relevant construct for identifying variables that may influence effectiveness of patient education interventions for people with lower levels of literacy Patient education must be tailored to different populations in order to reduce disparity Trial design must address characteristics of population with lower levels of literacy – potential confounders such as adherence, comorbidities, age, socioeconomic position – cultural context, recruitment, disease severity 21

Thank you 22