Date Published: June 11, 2019
Publisher: Public Library of Science
Author(s): Rosalie Power, Mohammad Muhit, Eamin Heanoy, Tasneem Karim, Nadia Badawi, Rahena Akhter, Gulam Khandaker, Andrea Martinuzzi.
To assess the health-related quality of life (HRQoL) and mental health of adolescents with cerebral palsy (CP) in rural Bangladesh.
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).
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. 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.
Cerebral palsy (CP) refers to a group of disorders affecting a person’s ability to move that is caused by damage to the developing brain either during pregnancy or shortly after birth . CP is considered to be one of the major causes of childhood disability. Globally, there is an estimated 17 million people living with CP of which prevalence is thought to be five to ten times higher in low and middle-income countries (LMICs) like Bangladesh . Bangladesh is the eight most populous country in the world and has a large adolescent population constituting nearly one-fifth of the country’s total population . A recent population-based study in Bangladesh reported the prevalence of CP to be 3.4 per 1,000 children ; equating to more than 90,000 adolescents with CP. 68.2% of the children with CP in Bangladesh were unable to walk and more than half had cognitive or speech impairments. Moreover, rates of epilepsy, visual and hearing impairment were above international norms [4, 5]. CP, is a lifelong condition that in contexts where disability is viewed as non-normative and ‘able-bodies’ are favoured has potential to negatively affect health-related quality of life (HRQoL) and mental health.
To the best of our knowledge, our study is one of the first studies from LMICs which looked at the HRQoL and mental health of adolescents with CP from a population-based sample and compared that with age and sex matched controls. Moreover, we have used multi-respondent assessment and utilised both general population (KDSCREEN) and CP-specific tools (CPQoL) for measuring HRQoL. We found that the HRQoL of adolescents with CP was significantly poorer than for age and sex matched peers without disability. Analysis of HRQoL dimensions revealed that ‘feelings about functioning’ for CPQoL-Teens and ‘peers and social support’, followed closely by ‘physical wellbeing’ for KIDSCREEN-27 were the poorest dimensions overall for adolescents with CP. Highest scores, indicating better HRQoL, were observed in ‘social wellbeing’ for CPQoL-Teens and ‘psychological wellbeing’ for KIDSCREEN-27. In regards to mental health, adolescents with CP reported significantly poorer outcomes than controls on all dimensions. The dimensions ‘hyperactivity’ and ‘emotional’ problems were poorest overall and ‘conduct problems’ was highest overall for adolescents with CP.
This study represents our first understanding of the HRQoL and mental health of adolescents with CP from rural Bangladesh and can provide guidance on priority areas for resource allocation and intervention. Our findings identified areas of concern for adolescents with CP in regards to HRQoL and mental health and that outcomes were significantly poorer than for age and sex matched peers without disability. High proportions of adolescents with CP reported having a lot of pain, and concerns about friendships, physical activity and energy, what may happen later in life, and feelings about having CP. Intervention to reduce disparity in HRQoL and mental health is required and resources should be targeted to improve physical, psychological, and social wellbeing to enhance long-term HRQoL and mental health of adolescents with CP in LMICs like Bangladesh. Specific interventions to alleviate modifiable aspects of HRQoL including pain, social isolation, and physical in-activity are recommended.