Helping caregivers of children with differences/disorders of sex development decide on treatment
RESULTS: DST CONTENT AND FORMAT: Stakeholders identified the following as essential: providing balanced information about treatment options and associated risks and benefits, diagnostic tests (biochemical, genetic, imaging, exploration under anesthesia) and their timing, and how to interpret "i...
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| Format: | eBook |
| Language: | English |
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[Washington, D.C.]
Patient-Centered Outcomes Research Institute (PCORI)
2019, 2019
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| Series: | Final research report
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| Online Access: | |
| Collection: | National Center for Biotechnology Information - Collection details see MPG.ReNa |
| Summary: | RESULTS: DST CONTENT AND FORMAT: Stakeholders identified the following as essential: providing balanced information about treatment options and associated risks and benefits, diagnostic tests (biochemical, genetic, imaging, exploration under anesthesia) and their timing, and how to interpret "incidental" genetic findings and carrier status; interpreting relationships between test results and gender of rearing decisions; eliciting caregiver values and preferences; using personal stories; coaching caregivers in effective communication with the health care team; disclosing conflicts of interest; addressing health literacy; and delivering an internet-based DST. CLINIC COMMUNICATION: We analyzed clinic visit content using qualitative computer-assisted coding that captured discussion topics and conversational tools. BACKGROUND: Differences/disorders of sex development (DSD) encompasses congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Clinical management commonly involves irreversible procedures performed in early life where "right" treatment decisions (eg, genital surgery) do not necessarily follow from specific diagnoses. OBJECTIVES: Create a decision support tool (DST) to promote shared decision-making in DSD; assess in-clinic communication between parents and health care providers related to decision-making; characterize processes used to gather input for DST development; and summarize use. METHODS: We divided the project into 3 major phases. We did not observe substantive differences in communications before vs after DST introduction. DST USE: Few caregivers used the DST as designed during pilot testing: 12% of caregivers reviewed all content and completed decision-making exercises; 40% used portions; and 48% did not use it past initial logins at clinic. Despite direct involvement in constructing the DST and participating in a study of its utility, providers infrequently referred to the DST during clinic visits. CONCLUSIONS AND LIMITATIONS: Despite calls for an interactive web-based DST, few families used the tool as intended, and few clinicians mentioned its use during clinic encounters. Specific training in integrating the DST in the context of usual care is needed to increase its use, which, in turn, creates the opportunity to assess its value in structuring communications that reflect the shared decision-making process Overall, the most frequent topic was "medical and anatomic facts"; however, compared with all nonpsychologist providers, caregivers spent less time on these facts and more time on "psychosocial implications of the DSD and its management." "Asking questions" was a frequent communication mode used by all, with providers asking questions at twice the rate of caregivers. SURGICAL DECISION-MAKING: Applying a qualitative thematic analysis of provider-caregiver discussions, clinic-based discussions included, in descending order of frequency: "option of not doing surgery," "surgery is not urgent," "surgery is cosmetic/elective," "surgery is controversial" or "future interest of child," and "consultation with outside sources" (eg, peer support or advocacy organization). Parents and providers used ambivalence and uncertainty about interventions and potential outcomes to selectively attend to details and discount warnings. In phase 1 (DST development), we interviewed key stakeholders (ie, affected children's parents [hereafter referred to as caregivers], health care providers, patient advocacy leaders, and clinical researchers; n = 49) regarding perspectives/experiences related to DSD and decision-making to guide DST development. In phase 2 (examining family-provider communication during clinic visits), member of the research team audio-recorded caregiver-provider conversations during regular DSD clinic appointments before (n = 36 caregivers) and after (n = 25 caregivers) introducing the DST into regular clinic care. In phase 3 (identifying opportunities and barriers to DST implementation), we elicited stakeholder (n = 40) opinions regarding adequacy of DST content, format, and desirability of integration with regular practice. Data comprised written feedback and transcribed interviews and clinic visits. |
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| Physical Description: | 1 PDF file (59 pages) illustrations |