Health Literacy In Patients With Chronic Pain

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This article first appeared in the Chronic Pain Ireland Newsletter Vol: 18 Issue 4 / December 2012

Dr Brona Fullen is a lecturer in the UCD School of Public Health, Physiotherapy and Population Science. She holds a BSc Physiotherapy (UUJ), H.Dip Healthcare (Acupuncture), UCD and PhD (UCD) degrees. She is an expert in the clinical area of pain management.

Her main research interests include the rehabilitation of patients with chronic pain, with emphasis on physical and cognitive function and sleep disturbance. She has obtained funding from the Health Research Board and the Health Service Executive for research in this area. Brona was the first Chartered Physiotherapist elected as President of the Irish Pain Society.

Statistics of chronic pain in Ireland

Chronic pain is now recognised as a disease in its own right and no longer as a symptom of an underlying cause (EFIC). Chronic pain affects 13% of the Irish population and impacts on sleep, exercise, ability to carry-out household chores, walk, maintain relationships with family and friends, and an independent lifestyle (Breivik et al 2006). The cost of chronic pain in Ireland has been estimated as €5.34 billion per year, or 2.86% of Irish GDP in 2008 (Raftery et al 2012). Chronic pain services in Ireland are generally under-resourced (Raferty et al 2012) resulting in prolonged waiting times for patients to attend pain clinics (Fullen et al 2006). Improved coordination and better management of patients is essential if the sizeable economic and personal burden of chronic pain is to be reduced

. . .

Health literacy and chronic pain

Patients with chronic pain must learn to manage their chronic condition. This includes being knowledgeable, motivated, having a positive attitude towards their health, and having effective communication skills.

However it has been found that these skills can vary greatly in patients based on their level of health literacy. Health literacy is defined as a patients’ ability to understand basic health information so they have the knowledge to understand their options and work with their healthcare professional to take better control of their health (

Health literacy can be viewed in two distinct ways: as a clinical risk factor or as a personal asset. From the health professional’s perspective, it is the notion of clinical risk factor that is relevant. If a patient does not understand the information given to them, it may impact on their compliance with recommended treatments. Ireland is regarded as having a well educated population; however nearly half of the population has low literacy skills and half of these patients having difficulty with the most basic reading tasks (OECD 1997; NALA, 2009). In terms of personal assets for patients, health literacy is a resource that allows them to understand and engage in the management of their own and their families’ illness, particularly in the management of chronic disease. Empowering patients through increasing their health literacy should be an objective of all healthcare professionals.

Factors contributing to health literacy levels

Health literacy levels in patients with chronic pain are unknown. In a recently published European-wide health literacy study, preliminary Irish results of 1000 people found that 40.3% had either inadequate or problematic health literacy (Cafferkey et al, Health literacy EU survey, personal communication). In the United States (US) 48% of the adult population lack the reading and numeracy skills required to fully understand and act on health information (Wolf 2005).

Problems with health literacy have been associated with poorer health outcomes in a number of chronic conditions: heart failure (Robinson et al 2011), asthma (Dewalt et al. 2007), and chronic obstructive pulmonary disease (Roberts et al 2008). Factors identified as contributing to inadequate health literacy include older age, chronic diseases, having English as a second language, ethnicity, reduced income, poor mental status and limited education (Robinson 2011, Macabasco 2011). The impact of health literacy in health outcomes in patients with chronic pain is unknown

. . .

Health behaviours and outcomes

Low health literacy has also been linked to undesirable health behaviours and outcomes such as poor self-management, poor communication between healthcare professionals and patients, decreased health-related knowledge, non-adherence to medication, lower reported self-esteem, patient distress and mortality (Briggs et al 2011, Mazor 2012, Ridpath 2012).

In other chronic conditions low health literacy has also been linked to an increased risk of hospital admission (Mazor 2012, Roberts et al 2008). Patients with low health literacy are at a 1.29 times higher risk of hospital admission than their counterparts with adequate health literacy (Baker et al 2002). A study investigating the relationship between asthma patients with low health literacy showed that they were significantly more likely to be hospitalised (Paashe-Orlow 2004). Similarly, patients with chronic conditions such as rheumatoid arthritis and have suboptimal health literacy had 3 times more hospital visits than those with rheumatoid arthritis and adequate health literacy (Gordon et al 2002), demonstrating that patients may have a poor understanding of their condition and how to manage it.

In addition, low health literacy is independently associated with decreased use of preventative health care services (Briggs et al 2011, Baker et al 2002) reflecting patients’ difficulty with self-management. In patients with chronic pain this may be particularly important as patients need to understand and comply with behavioural change i.e. with exercise and relaxation programmes as well as cognitive restructuring. The impact of health literacy in patients with chronic pain in terms of self-management and skills compliance is currently unknown.

. . .

Self-management for chronic diseases

Having self-management skills is particularly important for patients with chronic conditions. This includes handling health information and prescriptions, navigating healthcare settings, communicating with various health professionals and making informed decisions. This is of particular importance in patients with chronic pain where motivation and support from clinicians is seen as critical to perseverance with self-management strategies (Briggs et al 2011).

People working in the healthcare sector play an important part in improving health literacy by communicating more clearly and making information more accessible to patients, and is a basic component of most patient-healthcare professional encounters (Briggs et al 2011). However communication is frequently ineffective in patients with low health literacy. It has been found that patients with health literacy problems are unable to recall half or more than half of the information given to them during their visit with a doctor (Ong et al 1995). It has been suggested that this may be due to doctors not providing explanations to patients that are understood by all levels of health literacy (Ziegler et al 2001). If patients are to manage their chronic condition effectively, health professionals must not only ensure they deliver and communicate health information successfully, but also ensure that patients understand the information they are being given (Briggs et al 2011).

The National Adult Learning Agency has developed ‘top tips’ for health professionals to follow when communicating with patients:

    • avoid medical jargon – use plain English instead
    • use images
    • or visual aids where possible, and
    • use the ‘teach back method’ – ask the patient to repeat what you have told them in their own words to make sure they understand.

From the patients perspective they also recommend that before a visit with a healthcare provider (GP, consultant, Physiotherapist) that the patient:

    • makes a plan for the appointment i.e. makes a list of the questions they want answered, talks about their health concerns
    • asks questions during the appointment to help them understand
    • tells the GP or nurse about their day to day life, and 
    • before they leave, goes over what has been talked about and what they will do
. . .

As low health literacy can have an adverse effect on patient-healthcare provider communications and therefore on treatment compliance, patients’ prognosis and healthcare costs, it is imperative that health literacy levels are determined, and if necessary addressed by all healthcare professionals. This will allow information given to patients may be tailored to their needs to enable them to fully participate in the long-term management of their condition. In The Republic of Ireland the prevalence (Breivik et al 2005) and the cost of pain has been estimated (Fullen et al 2006, Raftery et al 2012). We next need to determine health literacy levels in patients with chronic pain to maximise care.

See References

Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees.Am J Public Health. 2002 92:8:1278-83
Breivik H, Collett B, Ventafridda V, Cohen R, Gallacher D. Survey of chronic pain in Europe: prevalence, impact on daily life, and treatment. Eur J Pain. 2006 10:4:287-333.
Briggs AM, Jordan JE, O’Sullivan PB, Buchbinder R, Burnett AF, Osborne RH, Straker LM. Individuals with chronic low back pain have greater difficulty in engaging in positive lifestyle behaviours than those without back pain: an assessment of health literacy. BMC Musculoskelet Disord. 2011 15;12:161
DeWalt, D.A., Dilling, M.H., Rosenthal, M.S., Pignone, M.P. (2007) Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr. 7:1: 25–31
Fullen B, Hurley DA, Power C, Canavan D, O’Keeffe D. The need for a national strategy for chronic pain management in Ireland. Ir J Med Sci. 2006 175:2:68-73
Gordon MM, Hampson R, Capell HA, Madhok R. Illiteracy in rheumatoid arthritis patients as determined by the Rapid Estimate of Adult Literacy in Medicine (REALM) score. Rheumatology (Oxford). 2002, 41:7:750-4
Health Literacy (accessed 15.11.2012) Macabasco-OʼConnell, A., Fry-Bowers, E, K., (2012). Knowledge and Perceptions of Health Literacy Among Nursing Professionals. Journal of Health Communication: International Perspectives, 16: 295- 307
Mazor KM, Roblin DW, Williams AE, Greene SM, Gaglio B, Field TS, Costanza ME, Han PK, Saccoccio L, Calvi J, Cove E, Cowan R. Health literacy and cancer prevention: two new instruments to assess comprehension. Patient Educ Couns. 2012 88:1:54-60
NALA (2009) NALA Policy Brief on Health Literacy in Ireland. Available at .pdf
OECD (1997) Literacy, Economy and Society. Results of the First International Adult Literacy Survey OECD. Published : OECD Publishing. Ong LM, de Haes JC, Hoos AM, Lammes FB. Doctor-patient communication: a review of the literature. Soc Sci Med. 1995 40:7:903-18
Paasche-Orlow, M, K., Parker, R, M., Gazmararian, J, A., Nielsen-Bohlman, L, T., Rudd, R, R. The prevalence of Limited Health Literacy. J of General Internal Medicine 2005, 20: 175-184
Raftery MN, Ryan P, Normand C, Murphy AW, de la Harpe D, McGuire BE. The economic cost of chronic non-cancer pain in Ireland: results from the PRIME study, part 2. J Pain. 2012 13:2:139-45
Ridpath JR, Larson EB, Greene SM.Can Integrating Health Literacy into the Patient-centered Medical Home Help us Weather the Perfect Storm? J Gen Intern Med. 2012 27:5:588-94
Roberts NJ, Ghiassi R, Partridge MR.Health literacy in COPD. Int J Chron Obstruct Pulmon Dis. 2008, 3:4:499-507
Robinson S, Moser D, Pelter MM, Nesbitt T, Paul SM, Dracup K. Assessing health literacy in heart failure patients. J Card Fail. 201117:11:887-92
Wolf MS, Davis TC, Arozullah A, Penn R, Arnold C, Sugar M, Bennett CL. Relation between literacy and HIV treatment knowledge among patients on HAART regimens. AIDS Care. 2005 17:7:863-73

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