Table 4.

Iteration 4: Refining Rationale and Organization in the Joint Display

Joint Display of Integrated Mixed Methods Data Collection
ConstructPatient-Caregiver Mixed Methods SurveyaClinical Variables From Medical Record AbstractionRationale of Organization (Example Questions)
Quantitative QuestionsQualitative QuestionsQuantitative Clinical VariablesQualitative Clinical Variables
Role Functioning
  • 1. I can keep up with household tasks

  • 13. How would you describe your child’s level of dependence?

  • 9. What is it like caring for your child when they have fever neutropenia?

  • 2. What are the extra resources and help required to keep your family functioning during fever neutropenia episodes?

Admission characteristics:
  • Hospital LOS

  • Readmission

  • Episode characteristics

  • Was a cause of FN identified? If so, what?


Demographics:
  • Age, gender, ethnicity

Risk stratification:
  • High risk or low risk


Type of outpatient follow-up (virtual vs in-person)
Integration of data from clinical course and outcomes that may or may not impact caregiver role functioning within nuclear family (eg, Do caregivers with shorter LOS report improved role functioning?)
Emotional Functioning
  • 6. What is your overall level of concern for your child’s health and condition during this fever neutropenia episode?

  • 8. During this fever neutropenia episode, I am confident in my ability to care for my child.

  • 10. I am satisfied with the overall care my child received.

  • 12. How would you describe your child’s mood?

  • 7. How has your child’s illness emotionally affected you?

Oncologic history:
  • Primary diagnosis

  • Date of diagnosis

  • Phase of therapy

  • Disease status


Admission characteristics:
  • Hospital LOS

  • Readmission

  • Episode characteristics

  • Was a cause of FN identified? If so, what?


Demographics:
  • Age, gender, ethnicity

  • Episode characteristics

  • Was a cause of FN identified? If so, what?

Discharger/follow-up description:
  • Type of follow-up (telephone, video, clinic)

  • Who did follow-up visits (RN, NP, fellow, attending)?

  • Frequency of follow-up visits

  • RN, parent, provider concerns documented


Risk stratification:
  • High risk or low risk


Admission characteristics:
  • Hospital LOS

  • Readmission

  • PICU admission characteristics, LOS

Integration of data from clinical course and outcomes that may or may not impact caregiver and patient emotional functioning (eg, Do caregivers with a certain type of follow-up visit feel more confident in providing care?)
Cognitive Functioning
  • 16. How would you describe your child’s interest or concentration?

  • 18. How would you describe your child’s quality of sleep?

  • 19. How would you describe your child’s activity or energy level?

  • 17. How have school and work been affected by your child’s illness?

PICU admission:
  • LOS ≤3 days

  • Acute respiratory failure present

  • Need for advanced airway

  • NIPPV or HFNC?

  • Need for pressor support

PICU admission:
  • Related to FN

  • Noninfectious concern

  • Disease status

  • Evidence of shock


Risk stratification:
  • High risk or low risk

Integration of data from clinical course and outcomes that may or may not impact patient/caregiver perception of patient’s subjective measures of cognitive function (eg, Is activity level affected by persistent N/V, typhlitis, need for IV narcotics, longer length antibiotics, LOS?)
Social Functioning
  • 3. I am able to spend time with my partner

  • 4. I am able to spend time with my other children and/or family

  • 5. How did this fever neutropenia episode affect members in your family?

Admission characteristics:
  • Hospital LOS

  • Readmission

  • Episode characteristics

  • Was a cause of FN identified? If so, what?

Type of outpatient follow-up (virtual vs in-person)Integration of data from clinical course and outcomes that may or may not impact caregiver social functioning (eg, Were repeat trips back to the hospital or clinic more difficult for siblings?)
Symptom Severity
  • 14. How would you describe your child’s appetite?

  • 15. How are symptoms different when your child is at home versus in the hospital?

Persistent nausea, vomiting or C diff present?
Admission characteristics:
  • Hospital LOS

  • Readmission

  • Episode characteristics

  • Was a cause of FN identified? If so, what?

Evidence of mucositis or typhlitis?
Severe pain with IV narcotic requirement
Integration of data from clinical course and outcomes that may or may not impact subjective measures of symptom severity (eg, Do caregivers notice gastrointestinal problems impact their child’s appetite?)
Global Functioning
  • 11. What is your child’s overall happiness and well-being?

  • 20. In your opinion, what is the most important value when your child has fever neutropenia?

  • 21. Is there anything else you would like to share about caring for your child during fever neutropenia?

Admission characteristics:
  • Hospital LOS

  • Readmission

  • PICU admission, LOS


Oncologic history:
  • Primary diagnosis

  • Disease status

Risk stratification:
  • High risk or low risk


Admission characteristics:
  • Hospital LOS

  • Readmission

  • PICU LOS

Integration of data from clinical course and outcomes that may or may not impact the global perspective of care delivery (eg, Does a high-risk episode or a severe outcome impact a care-giver’s report of patient well-being?)
  • C diff = Clostridioides difficile; FN = febrile neutropenia; HFNC = high-flow nasal cannula; IV = intravenous; LOS = length of stay; NIPPV = noninvasive positive pressure ventilation; NP = nurse practitioner; N/V = nausea/vomiting; PICU = pediatric intensive care unit; RN = registered nurse.

  • a Italics denote patient (vs caregiver) was focus of the question.

  • Note: Table footnotes have been added to improve clarity and readability. They were notably absent in the original tables.