Short summary

Rheumatic musculoskeletal diseases (RMDs) cause impaired function and reduced quality of life and patients with RMDs often require multi-disciplinary team rehabilitation. Goal setting is a central part of the rehabilitation process and patients are involved in defining and setting their own goals. A prerequisite to this is to be able to understand, critically relate to and act on health information, also called health literacy.

Rationale

Rheumatic musculoskeletal diseases (RMDs) are a diverse group of diseases affecting joints and muscles. Many of the diseases are painful and limit function over time, resulting in significant disability, affecting both quality of life and life expectancy. Multi-professional team rehabilitation is considered to be valuable in patients who have complex needs because of RMDs. Rehabilitation is ultimately concerned with behavioral change, making the identification and setting of goals in close cooperation with patients a core component.

Patient involvement in shared decisions for rehabilitation and treatment is becoming increasingly important in health care. However, empirical evidence shows that patients do not feel as involved as they want to be in decisions about their treatment and care. People with low levels of health literacy have a greater risk of inequitable health outcomes. It is our hypothesis, in the context of team rehabilitation, that patients with RMDs and low levels of health literacy experience challenges in relation to goal setting, which may affect the outcome of rehabilitation. Therefore, it is important to identify patients with low levels of health literacy. Goal setting is best practice for health professionals and is an essential part of the rehabilitation process. Studies suggest that patient involvement in goal setting has a positive impact on adherence to rehabilitation, the motivation to achieve goals and improvement in function. The concept of shared decision making (SDM) implies a practice, where patients work together with health professionals to decide the best course of action. Both parties share information relevant to the process; preferences are disclosed and rehabilitation options are discussed until agreement is reached.

Patients have reported barriers in relation to participating in goal setting, including lack of knowledge in relation to goal setting and the rehabilitation process, leading to a feeling of disempowerment. Other barriers include lack of knowledge regarding what is achievable when it comes to setting goals and the feeling that the clinician is the expert and is in a better position to set goals.

A prerequisite to participate actively in decisions regarding one's health, implies that patients are able to understand, critically relate to and act on health information. This is embedded in the concept health literacy.

A growing complexity in modern health care places increasing demands on patients in terms of understanding and utilizing health information. WHO describes a "health decision making paradox" in which the increased demands on individuals to make choices for their own health are not accompanied by enough information and support to make this happen. WHO recognizes health literacy as a critical determinant of health and a vital component in decreasing inequality in health. It is therefore relevant, in relation to goals, to utilize the concept of health literacy.

Health literacy (HL) is defined by WHO as "...the cognitive and social skills that determine the motivation and ability of individuals to gain access to, understand and use the information in ways which promote and maintain good health". Among other things, HL implies being able to read and understand health information, having the ability to navigate the health care system and to be able to communicate and engage with healthcare professionals, to have insight in planned treatment and know ones rights to healthcare services.

Studies indicate a socio-economic gradient, and low HL is associated with social determinants of health such as financial deprivation and low educational level. Furthermore, limited HL is associated with poor self-assessed health, under-utilization of preventive healthcare services, poor physical and mental health and multimorbidity. Studies have shown that people with low HL have poorer adherence to treatment and that they find self-management of chronic diseases difficult. It is therefore important to identify groups of people with low levels of HL, since they have a greater risk of inequitable health outcomes, for example in the context of team rehabilitation.

When it comes to understanding and following instructions regarding health, 14.5% of Danes perceive this as difficult or very difficult. Between 14.5 and 18.3% find it difficult or very difficult to ensure, that healthcare providers understand their problems properly and feel unable to discuss their health concerns with healthcare providers. This could indicate that healthcare communication is not tailored to the needs of the patients.

HL as an important skill, when it comes to participating in SDM. HL affects the ability of the patient to clarify perceptions on goals, present own values and preferences as well as perceived barriers to options presented from health professionals. This may result in rehabilitation goals that do not represent the patients' values and preferences, due to difficulties with understanding oral or written health information, sharing health history and adhering to treatment plans.

The link between HL and the experience of participating in goal setting in rehabilitation for patients with RMD has, to the best of our knowledge, only been scarcely explored. It is our hypothesis that patients' with RMDs and low HL experience challenges in relation to SDM and goal setting.

The overall aim of this PhD study is to investigate the significance of health literacy for shared decision making in the process of setting goals and follow up on goals in multi-professional team rehabilitation for patients with RMDs. This project focuses on the patient perspectives.

Description of the cohort

Adults (>18 years of age) with reumatic musculoskeletal disorders that are referred to an inpatient rehabilitation stay at Sano Middelfart or the Danish Hospital for Rheumatic Diseases.

Data and biological material

This PhD-project comprises two qualitative and one quantitative study. Studies 1 and 3 are qualitative interview studies. Study 1 explores patients' experiences with participation in goal setting during multi-professional team rehabilitation and study 3 explores barriers and facilitators for follow up on goals. Data is analyzed based on thematic content analysis. Study 2 is a cross sectional study aiming to assess the possible association between patients' level of health literacy and their perception of participation in SDM during goal setting measured with self-reported questionnaires (The 9-item Shared Decision Making Questionnaire and Health Literacy Questionnaire).

Collaborating researchers and departments

Danish Hospital for Rheumatic Diseases

• Professor, PhD, RN Jette Primdahl
• Professor, PhD, PT Ann Bremander

Department of Physiotherapy and Occupational Therapy, Hospitals of Naestved-Slagelse-Ringsted

• Post.Doc, Quality Assurance Officer, PhD, PT Brian Clausen