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

Publication ,  Journal Article
Flynn, KE; Kliems, H; Saoji, N; Svenson, J; Cox, ED
Published in: Health Qual Life Outcomes
October 19, 2018

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.

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Published In

Health Qual Life Outcomes

DOI

EISSN

1477-7525

Publication Date

October 19, 2018

Volume

16

Issue

1

Start / End Page

203

Location

England

Related Subject Headings

  • Quality of Life
  • Qualitative Research
  • Patient Reported Outcome Measures
  • Parents
  • Male
  • Humans
  • Health Policy & Services
  • Female
  • Family Relations
  • Diabetes Mellitus, Type 1
 

Citation

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Flynn, K. E., Kliems, H., Saoji, N., Svenson, J., & Cox, E. D. (2018). Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness. Health Qual Life Outcomes, 16(1), 203. https://doi.org/10.1186/s12955-018-1030-8
Flynn, Kathryn E., Harald Kliems, Nikita Saoji, Jacob Svenson, and Elizabeth D. Cox. “Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness.Health Qual Life Outcomes 16, no. 1 (October 19, 2018): 203. https://doi.org/10.1186/s12955-018-1030-8.
Flynn KE, Kliems H, Saoji N, Svenson J, Cox ED. Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness. Health Qual Life Outcomes. 2018 Oct 19;16(1):203.
Flynn, Kathryn E., et al. “Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness.Health Qual Life Outcomes, vol. 16, no. 1, Oct. 2018, p. 203. Pubmed, doi:10.1186/s12955-018-1030-8.
Flynn KE, Kliems H, Saoji N, Svenson J, Cox ED. Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness. Health Qual Life Outcomes. 2018 Oct 19;16(1):203.
Journal cover image

Published In

Health Qual Life Outcomes

DOI

EISSN

1477-7525

Publication Date

October 19, 2018

Volume

16

Issue

1

Start / End Page

203

Location

England

Related Subject Headings

  • Quality of Life
  • Qualitative Research
  • Patient Reported Outcome Measures
  • Parents
  • Male
  • Humans
  • Health Policy & Services
  • Female
  • Family Relations
  • Diabetes Mellitus, Type 1