Patients, Caregivers Want Lifelong Research to Focus on Quality of Life, Study Finds

Patients, Caregivers Want Lifelong Research to Focus on Quality of Life, Study Finds

Future research should focus on studies across the lifespan of cerebral palsy patients, with emphasis on participation and quality of life measures, according to a research agenda for cerebral palsy developed by patients, caregivers, and clinicians.

The study, “Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative,” was published in Developmental Medicine and Child Neurology.

While public funding of cerebral palsy research has increased over the years, only a small percentage goes to studies of clinical interventions (19%) and cerebral palsy in adults (4%).

Also, according to an online survey, parents and caregivers of children with cerebral palsy feel that the available medical information is inadequate to guide their medical decisions regarding the child.

The involvement of patients and caregivers in the development of research agendas is crucial to guide research and improve patients’ lives. However, few efforts have been made to produce such a collaborative research agenda for cerebral palsy.

The Cerebral Palsy Research Network (CPRN) and CP NOW have developed a patient-centered research agenda, funded by the Patient-Centered Outcomes Research Institute, designed to help patients and caregivers make better-informed healthcare decisions.

The agenda’s development involved more than 200 patients, caregivers, clinicians, researchers, and advocates. Online educational webinars (275 participants) and a collaborative survey platform (201 participants) were provided to set an initial list of research priorities, and an in-person workshop (47 attendees) was conducted to allow comment and discussion in establishing the final research agenda.

This resulted in 16 top research ideas, which showed an emphasis on longitudinal studies from childhood to adulthood, lifespan issues, and assessment of participation and quality of life.

Participants also expressed the need to better understand:

The underlying mechanisms and treatment of symptoms in adults, including chronic pain, depression, and fatigue;

How pediatric interventions might influence adult outcomes;

The issues and risks of aging with cerebral palsy, and how to prevent or treat them;

Psychosocial issues related to growing up with the disease, and best practices to encourage independence in these patients.

While motor and functional improvements are usually the main therapeutic goals, this study showed that participation in family, work, and community life was key for the cerebral palsy community. Participants also expressed appreciation for the engagement between consumers and clinician researchers.

Future research should focus on the development and establishment of practices to improve participation in these patients, namely through technology.

Researchers noted that the CPRN’s community registry, which gathers data directly from patients and their caregivers, might provide a tool to study long-term data and answer the questions identified in this research agenda.

“It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community,” researchers said. “This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation.”