PARENTS PREFER ACTIVE AND COLLABORATIVE PARTICIPATION IN DECISION REGARDING THEIR CHILD WITH MEDICAL COMPLEXITY

Purpose: To describe the opinions of parents with children with complex medical needs with respect to decision making preferences for different types of medical decisions.

Methods: From 11/1/2013 and 8/1/2014 we administered a mail survey to parents of patients ≤18 years with medical complexity seen for a well visit in ≤ 2 years at a large, hospital-based clinic. The survey utilized a validated pediatric control preferences scale that asks parents to choose the level of participation in medical decisions grouped into 3 categories: active, collaborative and passive.  We asked about four hypothetical decisions: general medical decisions about starting a medication, a minor illness decision, a major illness decisions and a major elective procedure decision.  We gathered parent information regarding income, education, primary language and race, and demographics and clinical characteristics on the children.

Results: Our response rate was 32% (304/955).  The median age of the children was 7.4 years and 86% had one or more complex chronic conditions.  80% of respondents completed the survey in English, and 74% were the biologic mother.  Among all hypothetical decisions parents expressed an overwhelming preference for an active and collaborative decision making style with only 8-24% expressing a passive style.  Parents described the following as very important to decision making:  facts about risks/benefits (99%), trust in the doctor (97%), their own decision making experience (80%), trying to be a “good parent” (66%), intuition (49%), and spiritual or religious beliefs (44%).  For the elective surgical procedure a passive decision making preference was associated with a high school education or less (p< 0.001), primary language of Spanish (p< 0.001) and African American race (p< 0.01).  Parent income and patient age were not associated with any decision making preference.

Parent Control Preference for Medical Decisions
	Active	Collaborative	Passive
General Medical Decision	50%	38%	12%
Mild Illness:  Ear Infection	41%	40%	19%
Severe Illness: Hospital Admission	30%	47%	23%
Elective Surgical Decision	59%	33%	8%

Conclusions: Because parents of children with complexity want to participate in medical decision-making, especially elective surgical decisions, effort to support shared decision making, such as decision aids, are needed.  Educational and racial/ethnic associations with passive decision making style represent challenges to the success of decision making interventions.