The Relationship of Complex Regional Pain Syndrome to Leisure Lifestyle

Executive Summary​By Peggy Harris, MS, LRT/CTRS

The purpose of this study was to examine effects of Complex Regional Pain Syndrome (CRPS) symptoms on an individual’s leisure lifestyle.  Specifically, goals of this study were to: (a) determine the quality of life of individuals with CRPS, (b) explore whether leisure participation and satisfaction changes after being diagnosed with CRPS, and (c) identify relationship of barriers to leisure participation. Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome which can affect any part of the body.  The most prominent symptom of CRPS is constant chronic pain, which can be severe and debilitating (National Institute of Neurological Disorders and Stroke, 2013). Other symptoms can include temperature changes in affected limb (may feel warmer but mostly colder), changes in skin color (turns red then bluish purple), swelling of affected limb, and changes in skin texture (shiny and thin), among others (Reflex Sympathetic Dystrophy Syndrome Association, 2012).  Fatigue and/or insomnia are also commonly reported among those with chronic pain conditions (Prefontaine & Rochette, 2013).  According to American RSDHope, the prevalence of CRPS in the U.S. is in the range of 1.5 to 3 million people, or approximately 1% to 2% of the population.  The usual onset of CRPS occurs between 30 and 40 years of age (Galer et al., 2001), however, more young people are being diagnosed.  

While little is known about the leisure of people with CRPS specifically, research indicates that leisure is significantly impacted in individuals with other conditions causing chronic pain.  For example, Liedberg and Vrethem (2009) found that 76% of individuals with polyneuropathy, caused by many different illnesses though diabetes was the most common, reported that their leisure activities were negatively affected, 68% could no longer do what they wanted to do, and 32% used all of their free time to rest.  

This study used a convenience sample via two organizations (Reflex Sympathetic Dystrophy Syndrome Association [RSDSA], and American RSDHope).  Subjects were recruited through these organizations’ email distribution lists, Facebook pages, or websites.  The inclusion criteria included having CRPS, and being at least 18 years of age. 
A 58-item questionnaire was developed to collect information on the following variables: quality of life (QOL) of individuals with CRPS, leisure participation, leisure satisfaction, leisure barriers, and demographics.  

The WHOQOL-BREF measure (The WHOQOL Group, 1997) was used to determine quality of life (QOL).  It is a 26-item 5-point Likert-type scaled test, which already had established reliability and validity for adults with and without disabilities.  The questionnaire was developed and administered using the online survey software Qualtrics.  

A total of 574 with CRPS responded.  The majority were female, white, married or with partner, had college degree, and unemployed.  The largest age category were those 18, despite a mean age of 42.6 years.  There were 44 states and eight countries/territories represented.

The results suggest that 49% of individuals with CRPS were either very dissatisfied or dissatisfied with their self-rated quality of life.  Another 31% couldn’t decide between satisfied or dissatisfied, and only 20.6% were either satisfied or very satisfied with their self-rated quality of life.  

Sleep issues due to CRPS negatively affected QOL, both active and passive leisure participation and leisure satisfaction. Furthermore, QOL was negatively affected by the reduction of passive leisure participation post diagnosis, except in the environmental domain.  Lastly, QOL was decreased due to the reduction of satisfaction with passive leisure participation post diagnosis.

Relationships were found between pain and the decrease of active and passive leisure participation and satisfaction, post diagnosis. Furthermore, there was a positive relationship between both active and passive leisure participation and leisure satisfaction.  

Satisfaction for both active and passive substantially decreased post diagnosed in comparison to before experiencing symptoms with a bigger drop for active. Barriers to active and passive leisure participation as well as leisure satisfaction post diagnosis included health-related issues (i.e., pain, depression, stress, fear), lack of knowledge of resources, transportation , architectural (inaccessible facilities, programs, buildings), financial, feeling excluded from programs, or interpersonal barriers (communication skills, etc.).

Leisure practitioners need to be aware of several things where programming for people with CRPS. First, 52% of the respondents in the study reported having little to no opportunity for leisure activities, thus leisure service providers need to provide programming for an undeserved population.  Second, they need to be aware that more young people are being diagnosed with CRPS and could possibly be entering community and therapeutic recreation programs.  Finally, leisure professionals need to find a way to provide leisure experiences for this population that will increase their quality of life without exacerbating their symptoms.

Research recommendations include viewing leisure as a coping tool for individuals with CRPS examining why do individuals with CRPS not pursue active leisure, and why satisfaction dropped in some areas and not participation.