Background/Purpose

Patient satisfaction is a multidimensional concept, and is a component of quality care. Inclusion of patient experience with care is highly relevant in improving service delivery.  There have been few attempts to measure satisfaction in the pediatric tertiary care setting,  inclusive of child as well as parent assessment.  We aimed to assess child and parent perspectives on their care in a multidisciplinary pediatric rheumatology outpatient service. 

Methods

Parents and children (≥9 yrs) attending the Pediatric Rheumatology clinics over a 4 month period in 2013 at BC Children’s Hospital, Vancouver, BC, were asked to complete a anonymous questionnaire to assess satisfaction with clinical care.  The questionnaire items were addressing 3 general areas: 1) information 2) clinical care and services, 3) global impact of disease on children’s quality of life.  Separate  parent and  child questionnaires were given.  Respondents were asked to rate agreement or disagreement with item statements on a 5 point Likert scale.  There were 4 open ended questions asking most difficult issue in coping with disease, top likes and dislikes about the clinic services, and changes they would suggest in the clinic. 

Results

376 parents and 284 children completed the questionnaire, with patient diagnoses of juvenile idiopathic arthritis (146), systemic lupus, dermatomyositis or vasculitis (45), or other rheumatic disease (91).   The majority of parents (92%) and children (85%) reported general satisfaction with care received, and most also felt their questions were answered in the clinic (parents 95%; children 87%).  Although parents find written material provided in clinic helpful (80%), 40% of children do not find this information helpful. Only 22% of parents report they feel to be the best judge of whether their child requires treatment or a medication.  Positive qualities of the staff (helpful, caring, friendly) were mentioned by a large number of parents (60%) and children (68%) in open ended questions about the clinic.  Structural issues of clinic attendance (wait time,  parking,  travel)  were issues reported by many parents and children. One quarter of parents and children report having a lot of pain due to their disease.  37% of children report being unable to fully participate in activities, and 29% report difficulty in school due to their illness.  Physical restrictions, pain, and need for medications and procedures were the most frequent difficulties reported in open questions by children;  parents reported feeling helpless and concern about unknown future as major difficulties for them in coping. 

Conclusion

Children with rheumatic disease and their parents receiving care through a multidisciplinary pediatric rheumatology team expressed global satisfaction with care provided, particularly interpersonal aspects.  Families and patients had difficulties with process quality measures.  Results indicated gaps in understanding and engagement amongst children and teens, pointing towards a need to implement changes in this area.  A critical analysis of patient and family experience is a valuable tool in ensuring that the services provided are tailored to the needs of patients and families.

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« Back to 2014 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/children-and-parent-satisfaction-in-the-pediatric-rheumatology-clinic-patient-orientated-quality-service-measures/