Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis

Parent degree of decision preference (1: no surgery-9: surgery)

Parent's desired treatment option: Binary (1- surgery, 0- no surgery)

For parents who select surgery, the intention of treatment timing.

Parent's response to five decision-related knowledge questions, scored as total answered correctly

Measured quantitatively by the validated Acceptability of Intervention Measure for caregivers in the intervention group. The scale consists of 4 items rated on a 5-point Likert scale. A mean score is created with a higher score indicating higher acceptability.

The Dugan Physician Trust Scale is a validated 5-item survey measure to assess the participant's trust in their physician. Each item is rated on a 5-point Likert scale and one item is reverse coded before all items are summed to create a composite score. Higher scores indicate stronger trust in the physician.

Measured by the validated Feasibility of Intervention Measure. The scale consists of 4 items rated on a 5-point Likert scale. A mean score is created with a higher score indicating higher acceptability.

2 unique items on perception of risk related to decision, scored individually. Each item is rated on a 5-point Likert scale. The items will be scored individually with higher responses indicating higher perceived decision-related risk.

Decisional conflict scale and 2 unique decision conflict items (individual items scored individually). Each item is rated on a 5-point Likert scale. The items will be scored individually with higher responses indicating higher decisional conflict.

Preparation for Decision Making (PrepDM):

The PrepDM scale is a validated 10-item survey measure that evaluates the participant's perception of how helpful their clinic visit was in preparing them to make the decision. Each item is rated on a 5-point Likert scale, and scores are standardized to a 0-100 scale, with higher scores indicating greater perceived readiness for decision-making.

Qualitatively assessed via focus groups and individual interviews for caregivers in intervention group and provider participants.

Consists of 3 unique items to assess the participant's level of worry related to decision making. Each item is rated on a 5-point Likert scale. The items will be scored individually with higher responses indicating higher levels of decision-related worry.

Quantitatively via the 9-item SDM-Q-9 (parent) and SDM-Q-Doc (provider) surveys. Each item is rated on a 6-point Likert scale. The total score is standardized to a scale from 0 to 100, with higher scores indicating greater perceived involvement in decision-making.

The Decisional Self-Efficacy Scale is a validated 11-item survey measure that evaluates the participant's ability to make informed health-related decisions. Items are rated on a 5-point Likert scale and scores are standardized to a 0-100 scale, with higher scores reflecting greater decisional self-efficacy.

Compare parent self-rated top three values/preferences driving decision making with decision they chose for consistency of decision with values/preferences. Will be scored based on number of values (out of 3) that match the treatment option selected.

Measured quantitatively by the validated Appropriateness of Intervention Measure. The scale consists of 4 items rated on a 5-point Likert scale. A mean score is created with a higher score indicating higher acceptability.

Correlation between top three parent preferences and values for decision identified by parents and by providers, calculated via a kappa score.

Qualitatively assessed via focus groups and individual interviews for caregivers in intervention group and provider participants.

Qualitatively assessed via focus groups and individual interviews for caregivers in intervention group and provider participants.

Using the DEEP-SDM coding scheme on video- and audio-recorded clinical encounters

Qualitative analysis of interviews and focus groups from intervention group participants using the CFIR

5-item survey questions based on Napoles 2015 and qualitative analysis of recorded clinic visits to assess quality of interpretation. The first item assesses the type and need for interpretation, with participants selecting from 7 categories. If an interpreter was used, participants will then answer 4 additional items about the quality of interpretation for the visit. Each of these subsequent items is rated on a 5-point Likert scale (1-poor to 5-excellent). A mean composite outcome of the completed items is used to calculate overall quality.

System Usability Scale (SUS):

The SUS is a validated 10-item survey measure that evaluates the perceived usability of the intervention. Items are rated on a 5-point Likert scale and scores are calculated by converting responses to a 0-100 scale, with higher scores indicating better usability. Only parent participants assigned to the intervention group will answer this measure.

NASA Task Load Index (NASA-TLX):

The NASA-TLX is a validated measure used to assess the perceived mental workload of using the intervention. It consists of 6-items to measure 6 core dimensions: mental demand, physical demand, temporal demand, performance, effort, and frustration. Each dimension is rated on a scale from 0 to 100, and scores are combined to produce an overall workload score. Higher scores indicate greater perceived workload. Only parent participants assigned to the intervention group will answer this measure.

Metadata on tool interaction, inputs, and use

Chart review of medical records to count number of admissions for pneumonia.

Consists of 2 unique items to assess how clearly the intervention is presented. Each item is rated on a 5-point Likert scale. The items will be scored individually. Only parent participants assigned to the intervention group will answer these items.

provider free response of top three reasons for decisiion that was made

selection of top three parent preferences and values for decision making from a list of options including a free response "other" field; asked to parent/patient participants and provider participants

Qualitative analysis of quality of interpretation captured on video-recordings of clinic visits.

Chart review of medical records to assess adherence to decision made.

Chart review of patient record for changes in pain symptoms related to scoliosis. Options include: worsened, unchanged, improved, not mentioned.

Chart review of medical records to assess for presence surgical outcomes: minor complications, major complications.

Chart review of patient record for changes in sitting comfort symptoms related to scoliosis. Options include: worsened, unchanged, improved, not mentioned.

For those who undergo surgery, the days the patient spent in the ICU after surgery

For those who undergo surgery, the days the patient spent in the the hospital after surgery

For those who undergo surgery, the days the patient spent on mechanical ventilation (if not ventilated at baseline) or days spent on higher than normal mechanical ventilation settings (if ventilated at baseline).

Chart review of medical records to count number of days admitted for pneumonia.