Pediatric Palliative Care Needs Assessments: From Paper Forms to Actionable Patient Care

Dear Editor:

Pediatric palliative care needs assessments have potential to serve as powerful tools to measure a family's self-perceived needs and to then foster team action to address these needs. ¹ Too often in the care of children, needs assessments either do not occur in a formalized manner or remain paper documentation without triggering patient-centric interventions. ² Patients and families are trusting their healthcare teams with their vulnerabilities and urgencies when reporting perceived needs. Our pediatric palliative care team thus prioritized revision of our needs assessments approach for quality improvement.

Our study team distributed combination check-box and open-ended needs assessment questionnaires to all pediatric patient families at time of initial palliative care consult from 2013 to 2016. Needs assessment data were then entered in the electronic medical record to enable goals of care documentation. Cumulative review of the three-year needs assessment data provides valuable, under-reported insight into the self-assessed needs of families receiving pediatric palliative care. Study population demographics are included as Table 1. Identified needs from 70 consecutive needs assessment forms completed at a free-standing children's hospital in Omaha, Nebraska, included the following:

• Education (n = 57; 81.4%) to include more information on the child's diagnoses and symptom management with 33/70 (47.1%) families requesting information on prescribed treatment and 32/70 (45.7%) families requesting information on complementary or integrative therapies.

• Quality of life (n = 53; 75.7%) to include adjusting to illness and improving patient and family quality of life.

• Home care (n = 48; 68.6%) to include caregivers and equipment in the home, transitional care facilities, and hospice services.

• Communication (n = 44; 62.9%) to include prognosis and wishes/hopes communication.

• Finances (n = 42; 60%) to include medical costs, insurance coverage, food security, utilities, and housing.

• Advanced care planning (n = 18; 25.7%) to include DNR conversations and end-of-life decision making.

• Family support (n = 17; 24.3%) to include sibling coping, grandparent care, and couples concerns.

• Spiritual (n = 17; 24.3%) to include meaning making.

• Counseling (n = 16; 22.9%) to include specific request for help with anger, depression, and anxiety.

• Transportation (n = 13; 18.6%).

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Table 1.

Participant Demographics

Characteristics	n = 70 (%)
Gender
Male (mean age 5.3 years)	36 (51.4)
Female (mean age 3.9 years)	34 (48.6)
Ethnicity
Caucasian	45 (64.3)
Hispanic	9 (13.0)
African American	5 (7.1)
>two races	7 (10.0)
Asian	1 (1.4)
American Indian	1 (1.4)
Other	2 (2.8)
Diagnostic category a
Pulmonary disease	26 (37.1)
Chromosomal abnormality	22 (31.4)
Cardiac disease	23 (32.9)
Seizure disorder	20 (28.6)
Neuromuscular/metabolic disease	12 (17.1)
Severe brain malformation	12 (17.1)
Heart failure	9 (12.9)
Cancer	7 (10.0)
Extreme prematurity	7 (10.0)
Multisystem organ failure	7 (10.0)
Nutrition format
G-Button	29 (41.4)
NG or NJ	18 (25.7)
Oral	23 (32.9)
Respiratory support
Room air	33 (47.1)
Trach w/vent	17 (24.3)
Nasal canula	9 (12.9)
Intubated	9 (12.9)
CPAP or BiPAP	2 (2.8)
Function and technology
Fully active without technology	1 (1.4)
Active with minimal technology help needed	27 (38.6)
Able to interact with environment with advanced technology	29 (41.4)
Minimal interaction with environment regardless of level of technology	13 (18.6)
Care markers
Consulted for complex medical decision making or overall goals of care	56 (80)
Intensive care setting with poor documented progress or prognosis	29 (41.4)
More than one hospital admission for same diagnosis in past 30 days	26 (37.4)
Length of hospitalization (>seven days) without biomedical improvement	26 (37.4)
Self- or parent-perceived “unacceptable” level of pain or other symptom distress in past 24 hours	12 (17.1)

a

More than one diagnostic category may apply per respondent.

NG, nasogastric; NJ, nasojejunal; CPAP, continuous positive airway pressure; BiPAP, bilevel positive airway pressure.

Our interdisciplinary pediatric palliative care team then gathered at a team retreat with intention of refining and strengthening the needs assessment form into actionable, team-accountable items. We are now working with our hospital information technology team to implement tracking follow-up interventions and outcomes for each need category. A study team member will now sit with families at time of needs assessment form completion to foster open dialogue with intention to systematically then review all new needs assessment forms at our weekly interdisciplinary meetings. In addition to parent form, we are creating a “child voice” needs assessment with developmentally appropriate forms for pediatric patients and are considering sibling and grandparent forms. Collective review of three years of cumulative needs assessment data allowed us to now target limited resources toward collectively recognized patient need priorities. Although the quantified number of recognized needs may hint at fewer families identifying certain needs (such as spirituality or counseling needs), we clinically bear witness to intense burden in these areas warranting revision of language on the prior needs assessment forms.

Our team shares this quality improvement approach with intention to encourage needs assessments as a livable, actionable approach to quality pediatric patient care. Our revised needs assessment questionnaire is available upon request by contacting the corresponding author.