Living Independently Fully Engaged (LIFEspan), a Nurse Practitioner (NP)-led clinic, is a unique service facilitating transition of young adults with Cerebral Palsy (CP) or Brain Injury (BI) from paediatric to adult rehabilitation. Anecdotally, clinicians reported an increase in the number of young adults with mental health concerns, specifically, anxiety and depression symptomatology.
A systematic literature review to find the prevalence of anxiety and depression in young adults with CP or BI revealed conflicting results. Many articles endorsed an increased risk for depression, anxiety and other mental health issues (i.e., psychological distress, suicidal ideation, psychosis) in children and young adults with CP or BI. 1,2,3,4,5,6,8 Yet, one study did not find an increased prevalence of mental health issues in youth with CP. 7
In 2016, a pilot study using Patient Health Questionnaire-4 (PHQ-4) in LIFEspan Service was completed. The results showed 73/133 had positive screens for anxiety or depression. In September 2017, Research Ethics Board approval was received for a study to identify the prevalence of mental health concerns in young adults with CP and BI.
Objectives:
- Describe the levels of depression, anxiety and community integration among a sample of LIFEspan patients with CP or BI
- Provide an overview of the feasibility considerations for administering PHQ-4 and Community Integration Questionnaire (CIQ) among young adults with CP or BI
- Provide an overview of the facilitators and barriers in administering PHQ-4 and CIQ among young adults with CP or BI
Methods:
Study participants were recruited from 460 current patients in LIFEspan Service between 18-55 years old, with a childhood onset disability of CP or BI.
To date, October 31, 2018, a total of 430 charts were reviewed; with 206 unique participants and 7 participants in follow up consented in the study; 30 young adults did not give consent and completed the PHQ-4 and CIQ; and 187 were ineligible due to having a moderate to severe intellectual disability. Reasons given by young adults who did not consent included: not feeling comfortable with mental health data being used for analysis and publication; or did not feel confident the study was anonymous.
The study was a cross sectional quantitative study. Data collection involved a chart review, clinic assessment; and self-assessments using PHQ-4 and CIQ.
Data collected related to the feasibility of administering the tools included completion rate, and time required to complete PHQ-4.
Comments were collected from participants to identify facilitators and barriers of using the CIQ and PHQ-4, such as, physical ability to complete the forms; or clarification questions for completing the tools.
Demographic statistics were performed including group means and frequencies counts; student t-tests and Chi squares analyses were used to examine group differences and associations between variables.
Results:
Preliminary analysis in July 2018 from 167 recruited participants showed a mean PHQ-4 of 3.188-3.258, indicating a positive screen for anxious or depressive symptomatology in young adults with CP or BI. CIQ results showed that females were more integrated in the community than males.
There was a significant difference in young adults with CP who had “little interest or pleasure in doing things everyday” at 11% in comparison to patients with BI at 3%.
40% of males versus 55 % of females experienced pain; there were no significant differences in males versus females in terms of depression scores, as measured by the PHQ-4.
CIQ and PHQ-4 were completed within the clinic appointment.
PHQ-4 and CIQ questionnaires presented some challenges, such as, young adults with quadriplegia or fine motor challenges required support to physically complete the tools; there was a desire for clients to use 0.5 rather than whole number ratings, and both the CIQ and PHQ-4 required clarification of some statements and rating scales.
Conclusion:
Mental health is a global chronic health concern.9
The PHQ-4 offered a validated, quick screening tool for anxiety and depression. Healthcare providers are able to review, interpret and provide recommendations for early intervention and treatment, when needed.
The CIQ identified the level of community integration; and led to conversations with young adults to establish goals to increase their level of community integration and independent living skills.
The preliminary study results supported the feasibility of screening for mental health and community integration.
Mental health screening is integral in chronic disease management. Patient care and quality of life may be enhanced with increased disability awareness, increased conversations about mental health and awareness of and participation in intervention and treatment.
Our intent is to publish a manuscript after the conclusion of the study in September 2019 and consider a proposal to revise the CIQ, with permission, to increase the usability of the CIQ with young adults with CP or BI.