Journal Article

Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness

Kliems, Harald, Flynn, Kathryn E., Svenson, Jacob, Cox, Elizabeth D., Saoji, Nikita

2018

Overview

Background Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. Our goal was to investigate whether the novel Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Family Relationships measure, developed primarily within the general pediatric population, reflects the experiences of family relationships for chronically ill children and their parents. Methods We conducted semi-structured qualitative interviews with children (aged 8–17) with common chronic conditions: asthma ( n  = 6), type 1 diabetes ( n  = 5), or sickle cell disease ( n  = 5), and separately with one of their parents ( n  = 16). Interviews were recorded, and two team members independently coded the written transcripts facilitated by Nvivo 10. The systematic content analysis used a combination of: 1) pre-specified themes corresponding to the six facets of the domain identified during measure development and reflected in the content of the items (i.e., Sense of Family; Love and Caring; Value and Acceptance; Trust, Dependability, and Support; Communication; Enjoyment), as well as 2) open-coding, allowing participants to define important concepts (i.e., disease impact). Results Family relationships were conceptualized in a similar way to the general population, as evidenced by child and parent responses to open-ended questions about family relationships and to specific probes that corresponded with the item content in the Family Relationship 8-item short form. Children spontaneously discussed the impact of their disease on family relationships less often than parents did. Although participants described how living with a chronic illness positively and negatively impacted aspects of family relationships, nearly all participants believed their responses to the PROMIS® Family Relationships items would not change if they (or their child) did not have a chronic illness. Conclusions Among a sample of families of children with one of 3 chronic illnesses, participants described family relationships in a way that was consistent with the facets of the PROMIS® Family Relationship domain. This study adds to the content validity of the measure for children with chronic illness.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Adolescent / Analysis / Anemia, Sickle Cell - psychology / Asthma / Asthma - psychology / Care and treatment / Child / Children / Children & youth / Chronic conditions / Chronic Disease / Chronic diseases / Chronic illnesses / Content analysis / Content validity / Diabetes / Diabetes mellitus / Diabetes mellitus (insulin dependent) / Diabetes Mellitus, Type 1 - psychology / Families & family life / Family interactions / Family Relations - psychology / Family relationships / Female / Humans / Illnesses / Information systems / Male / Medical care quality / Medical research / Medicine / Medicine & Public Health / Parents / Parents & parenting / Parents - psychology / Patient Reported Outcome Measures / Pediatric / Pediatrics / Population / Qualitative / Qualitative Research / Quality of Life / Quality of Life Research / Quantitative psychology / Risk factors / Sickle cell disease / Teenagers / Validity / Well being