Time toxicity and shared decision-making in cerebral palsy.

Area of Science:

• Healthcare research
• Disability studies
• Patient-centered outcomes

Background:

• Shared decision-making between clinicians and families is common in healthcare.
• Time-related burdens, or "time toxicity," are increasingly recognized in oncology but often ignored in other fields, like cerebral palsy research.
• The impact of unaddressed time-related burdens on individuals with disabilities is largely unknown.

Purpose of the Study:

• To introduce and advocate for the inclusion of "time toxicity" as a critical outcome measure in healthcare for people with disabilities.
• To build upon existing research in oncology to adapt the concept of time toxicity for a broader patient population.
• To highlight the potential profound effects of time-related burdens that are currently unaccounted for in disability research.

Main Methods:

• This study is conceptual, building upon existing literature from oncology.
• It proposes applying the "time toxicity" framework to individuals with disabilities who frequently interact with the healthcare system.
• Qualitative or quantitative research methods would be needed to formally assess time toxicity in this population.

Main Results:

• Currently, time-related burdens are not systematically measured as an outcome in disability healthcare, particularly for conditions like cerebral palsy.
• The lack of measurement suggests a potential gap in understanding the full impact of healthcare interventions on patients' lives.
• The concept of "time toxicity" offers a novel lens to evaluate patient experience and burden.

Conclusions:

• Time toxicity is a significant, yet understudied, factor in the healthcare experiences of people with disabilities.
• Integrating time toxicity into outcome measures can lead to more comprehensive and patient-centered care plans.
• Further research is needed to quantify and address time-related burdens in disability healthcare.