Investigators have created a new questionnaire to assess the psychosocial and economic impact of juvenile idiopathic arthritis (JIA) on caregivers of children with the disease.
The new tool was described in the study, “Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers,” published in the journal Pediatric Rheumatology.
JIA comprises a group of chronic inflammatory conditions in children that affect their joints, causing swelling, stiffness, limited mobility, and pain.
The primary caregivers — usually the parents — of children with JIA play a key role in providing social, financial, and emotional support. They also are responsible for ensuring that children comply with their prescribed treatments, monitoring disease progression, and reporting any changes to their child’s physicians.
“Some instruments have been created to measure burden, anxiety, depression or quality of life of caregivers, however, those have not been designed for JIA,” the investigators said.
Specifically, none of these assessments addresses the social, emotional, economic, and physical aspects of providing care for JIA children — all frequently affected areas in caregivers — in a single questionnaire.
To address this gap, researchers in Mexico created a specific questionnaire to evaluate the psychosocial and economic impact that JIA poses on the primary caregivers of children with the disease.
First, the investigators searched the literature using three online databases — Medline, ProQuest, and Scopus — for published studies reporting caregivers’ experiences. This was followed by interviews of 15-20 minutes with 15 primary caregivers of children with JIA to identify topics that should be included in the new questionnaire.
After searching the literature, the researchers found 38 studies reporting the experiences of primary caregivers of children with chronic disorders, which hit on various issues.
A subsequent analysis of the interviews identified nine primary topics of interest: economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease.
The investigators then combined these topics to create the new questionnaire. The first version contained 56 items, which were ultimately expanded to 62.
The final version was divided into five domains: impact of the disease, knowledge of the disease, alternative medicine, future, and religion. The questionnaire was then validated in a study involving 32 primary carers of children with JIA. Most caregivers (93%) were women, with a median age of 37.
One week after completing the questionnaire for the first time, half of the participants were asked to complete it a second time to assess its reliability. Caregivers also were asked to complete four additional surveys to evaluate their quality of life, coping, the disease’s socioeconomic impact, and depression.
The results revealed that more than half (56%) of the caregivers felt sad at the time of diagnosis, and almost all (90%) had depression.
In addition, 63% of the carers said that JIA had a direct impact on their financial situation. A total of 72% felt anxiety about the future, and 37% felt their family relationships had changed as a result of the disease.
Subsequent statistical analyses found inconsistencies with the validity of the questionnaire. As a result, 11 items were eliminated, three relocated, six altered, and 39 summarized.
Following those changes, the researchers originated the final version of the “Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire” (CAREGIVERS questionnaire).
The final questionnaire comprised 28 items, divided into eight domains: disease impact, social impact, economic and working impact, family impact, impact on caregiver-patient relationship, impact on couple relationship, impact on spirituality/religion/personal beliefs, and impact on social networks.
“The CAREGIVERS questionnaire [has] shown a good understanding among participants, reliability and consistency to measure the psychosocial and economic impact on primary caregivers of patients with JIA,” the researchers said. “It represents the first step to establish a program of research into demands of caregivers and becomes an effort to improve their conditions.”
The researchers said the questionnaire is “comprehensive, relevant and practical … to administer.”
“It is necessary to complete the external validation of the instrument in further studies,” they said.