Health-related quality of life and mental health of adolescents with cerebral palsy in rural Bangladesh

Rosalie Power; Mohammad Muhit; Eamin Heanoy; Tasneem Karim; Nadia Badawi; Rahena Akhter; Gulam Khandaker

doi:10.1371/journal.pone.0217675

Health-related quality of life and mental health of adolescents with cerebral palsy in rural Bangladesh

PLoS One. 2019 Jun 11;14(6):e0217675. doi: 10.1371/journal.pone.0217675. eCollection 2019.

Authors

Rosalie Power^{1

2}, Mohammad Muhit^{2

3}, Eamin Heanoy^{2

3}, Tasneem Karim^{2

3}, Nadia Badawi^{1

4}, Rahena Akhter⁵, Gulam Khandaker^{1

2

3

6}

Affiliations

¹ Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
² Asian Institute of Disability and Development (AIDD), University of South Asia, Dhaka, Bangladesh.
³ CSF Global, Dhaka, Bangladesh.
⁴ Cerebral Palsy Alliance Research Institute, University of Sydney, Sydney, New South Wales, Australia.
⁵ Faculty of Dentistry, University of Sydney, Sydney, New South Wales, Australia.
⁶ Public Health Unit, Central Queensland Hospital and Health Service, Rockhampton, Queensland, Australia.

Abstract

Aim: To assess the health-related quality of life (HRQoL) and mental health of adolescents with cerebral palsy (CP) in rural Bangladesh.

Methods: Case-control study of adolescents with CP (10 to ≤18-years) and age and sex matched controls without disability. Primary caregivers were included for proxy report. HRQoL was measured with Bengali versions CP Quality of Life-Teens (CPQoL-Teens) and KIDSCREEN-27. Mental health was measured with Strengths and Difficulties Questionnaire (SDQ).

Results: 154 cases and 173 controls matched on age and sex participated (mean age 15.1 (1.6) and 14.9 (1.6) respectively; female n = 48, n = 55 respectively, p>0.05). CPQoL-Teens was administered to adolescents with CP only; mean outcomes ranged from 38.5 (27.4) to 71.5 (16.1) and 'feelings about functioning' was poorest domain for both self- and proxy-report groups. KIDSCREEN-27 was administered to adolescents with CP and controls; adolescents with CP mean outcomes ranged from 25.9 (12.2) to 48.7 (10.56) and were significantly poorer than controls, mean difference 4.3 (95% CI 0.7 to 7.8) to 16.7 (95% CI 14.5 to 18.5), p<0.05. 'Peers and social support' was poorest domain for all groups. In regards to mental health, adolescents with CP reported significantly poorer mean SDQ than peers without disability, mean difference 0.7 (95% CI 0.3 to 1.1) to 7.8 (95% CI 6.7 to 8.9), p<0.05; and were for self-report 7.8 (95% CI 2.6 to 23.0) and proxy-report 12.0 (95% CI 6.9 to 20.9) times more likely to report 'probable' range 'total difficulties' score. Individual item analysis of CPQoL-Teens and KIDSCREEN-27 identified unique areas of concern for adolescents with CP related to pain, friendships, physical activity and energy, what may happen later in life, and feelings about having CP. Financial resources were of concern for both cases and controls.

Interpretation: Adolescents with CP in rural Bangladesh are at high risk of poor HRQoL and mental health problems. Effort to reduce the disparity between adolescents with CP and those without disability should consider wellbeing holistically and target dimensions including physical, psychological and social wellbeing. Specific interventions to alleviate modifiable aspects of HRQoL including pain, social isolation, and physical in-activity are recommended.

Publication types

Clinical Trial
Multicenter Study
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Bangladesh / epidemiology
Case-Control Studies
Child
Delivery of Health Care
Female
Humans
Male
Mental Health*
Paralysis / epidemiology
Paralysis / physiopathology*
Paralysis / therapy
Quality of Life*
Registries*
Rural Population*
Surveys and Questionnaires*

Grants and funding

This study has been supported by the Cerebral Palsy Alliance Research Foundation Australia (Project Grant CDG6416; RP is supported by the Career Development Grant CDG04117). The study sponsor played no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication.