Incorporating the patient’s perspective

Lupus or systemic lupus erythematosus (SLE) is a complex, chronic autoimmune disease of the connective tissues in which the immune system attacks itself by developing antibodies leading to widespread inflammation and tissue damage.  It affects nearly every organ in the body, such skin, joints, kidneys, brain, lungs, blood vessels and membranes, and is characterized by unpredictable series of flares and remissions (Medscape, 2010).  Prevalence and incidence of lupus is 3-5 times higher among African-Americans and Hispanics than Caucasians, with women of childbearing age more affected than men (Lim & Drenkard  2008).

Like many chronic diseases, treatment for lupus is focused on symptom management, and more recently, addressing quality of life issues.  In comparing health related quality of life (HRQoL) of patients with common chronic diseases (hypertension, congestive heart failure, adult onset diabetes mellitus, myocardial infarction and depression in the US), the general health  of patients with SLE is significantly lower and affects every area in quality of life (Jolly 2005).  McElhone, Abbott, and Teh (2006) also found SLE patients had HRQoLs comparable to those with severe medical illness, such as AIDS, rheumatoid arthritis and Sjogren’s Syndrome.

Quality of life refers to an individual’s physical, emotional and social wellbeing, including their ability to function in the ordinary tasks of living. It is a personal definition and perspective, one that will vary from person to person despite similar circumstances and disease conditions.  The state of well-being is not only the absence or management of disease, but rather equilibrium between the physical and emotional states as defined by the individual.  Candace Pert is one of the first scientists to recognize that the brain and the immune system might communicate on the molecular level.  In her book, Molecules of Emotion, she explains the bi-directional communication network as “every change in the physiological state is accompanied by an appropriate change in the mental emotional state, conscious or unconscious, and conversely, every change in the mental emotional state, conscious or unconscious, is accompanied by an appropriate change in the physiological state” (Pert  1997). 

  For patients with SLE, outcomes such as fatigue, pain, return to normalcy, physical and emotional well-being are the highest priorities in achieving wellness, and degree of psychological distress was found to be the best predictor of quality of life among patients (Heller & Shadick  2007, Seawell & Danoff-Burg  2004).  By reducing stress and depression, and increasing social support, better health status could be achieved.  Adequate social support is reported to be a protective factor against premature mortality in patients with SLE (Pons-Estel, et al. 2009).

Because of the physical, social and psychological manifestations of SLE, outcome measures should not be confined to just mortality data, disease activity and damage, but include the patients’ perspective on their own health status and quality of life in order to fully understand the whole patient (McElhone, et al.  2006). 

Incorporating the patient’s perspective into the clinical picture is becoming increasingly emphasized.  In 2002, OMERACT’s (Outcome Measures in Rheumatoid Arthritis Clinical Trials) concluded their annual conference with the goal of pursuing research to incorporate the patient’s perspective into outcome assessment (Carr, Hewlett, Hughee, et al. 2003).  Interestingly, the importance of attending to quality of life concerns was addressed by Daltroy & Liang (Harvard Medical School) in 1993.  The need for education, communication, coping skills, social support, pain management, and promoting patient control and diminishing helplessness were highlighted.            Note: The painting is a self-portrait painted by a patient.              

Two studies using visual methods to address the importance of incorporating patient perspective in SLE patients are worth mentioning.  According to Büchi, et al. (2000) perception of disease is a measurable phenomenon, and the Pictorial Representation of Illness and Self Measure (PRISM) offers a quantitative method of measuring the patient’s perception of suffering caused by SLE.  The second study used drawing to understand how lupus was experienced by patients, felt and how the manifestations of the disease influenced patients’ emotions and behaviors (Nowicka 2007).  By providing patients with a sense of control in reaching their personal definition of wellness leads to better outcomes (Heller, et al.  2007).

Assessing patient reported outcomes on health related quality of life (HRQoL)  instruments is one method  is one method of corporating patients perspectives in treating the whole patient. Another useful modality is the use of arts interventions in conjunction with a generic HRQoL assessment tool.  Utilizing art as a non-invasive intervention is another novel way of promoting and incorporating the patient’s perspective in understanding and managing the physical, social and    emotional burdens of lupus.  Note…the painting is a self-portrait painted by a patient.

 

ARTS INTERVENTION

 When the arts are used in health care settings, many define and view the act of creating art as ‘art therapy.’  This needs clarification.  Art therapy is professional one-on-one counseling provided by a licensed art therapist using art materials as the mechanism to facilitate communication between patient and therapist (Malchiodi 2003).  However, the idea that creating art can be a natural healing process is believed by not only art therapists, but artists, health care professionals, and many in the general public.   For use in health care settings, creating art needs to be viewed as a non-professional experiential modality in the context of a holistic framework, whereby the process of creating art is in itself therapeutic.

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2 responses to “Incorporating the patient’s perspective

  1. Kerstin Tineo

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