Cerebral Palsy and Quality of Life: Patients and their Families - Essay Example

?RUNNING HEADER: Cerebral Palsy and Quality of Life Cerebral Palsy and Quality of Life: Patients and their Families BY YOU YOUR SCHOOL INFO HERE HERE ABSTRACT Cerebral Palsy impacts between 1.2 and 2.5 per 1000 children who are of school age, with prevalence varying from country to country. Quality of life (QOL) is significantly impacted when children struggle with symptoms of Cerebral Palsy, impacting their independence (autonomy) and the struggles with daily living impact family members charged with the responsibility for caring for these children. The analyzed research study involved a sample of 27 patients struggling with Cerebral Palsy utilizing the Lifestyle Assessment Questionnaire. 11.1% of patients described severe effects related to quality of life, 25.9% reported moderate impact on QOL, and 37% reported mild impact on QOL. Findings indicated that the variety of care and quality of care have the most predictable impact on QOL. Cerebral Palsy and Quality of Life: Patients and their Families Introduction The complex combination of physical problems and emotional issues associated with Cerebral Palsy oftentimes reduce the quality of life of children suffering from this disease. Caregivers that are charged with taking responsibility for children with Cerebral Palsy are often burdened with a variety of sociological and psychological challenges such as dealing with recurring sleep disorders (Newman, O’Regan & Hensey, 2006) and impaired communication with others in the social environment. As such, it is important to determine how the severity of symptoms associated with the disease impacts quality of life for the child and their familial caregivers. The differences in QOL between care systems in developed countries and non-developed countries is an especially important variable in determining quality of life, making it important to study how to improve or sustain quality of care for children suffering with Cerebral Palsy to improve QOL worldwide. Literature Review Symptoms of Cerebral Palsy are oftentimes very severe, including a hardening of the musculature (spasticity), weakened motor controls that include, but are not limited to, standing, locomotion (the ability to move about freely and autonomously), and even emotional problems (Davis, 1997). Having to deal with the complexities of physical symptoms combined with emotional disturbances often places significant stress on parents and other caregivers (Mihaylov, Jarvis, Colver & Beresford, 2004). This can radically decrease the quality of life for not only the child, but the familial dynamic. Children suffering from Cerebral Palsy often experience intense pain coupled with fatigue with even more severe symptoms including permanent vision loss (Hirsh, Gallegos, Gertz, Engel & Jensen, 2010). All of these symptoms prevent the child from achieving self-care, which is an autonomous method of performing common lifestyle activities such as bathing, eating and even dressing oneself, demanding that the child seek alternative care methods that include professional assistance or even more reliance on family members to perform these activities. Again, the burden of attempting to provide care dramatically impacts the quality of life, especially for caregivers. Unfortunately, in most instances, Cerebral Palsy is a progressive disease, meaning that the quality of life for the individual becomes increasingly less positive as the full range of their disabilities absolutely prevents self-care well into adulthood assuming that the child maintains a reasonable life span. Quality of life is also impaired for both the child and family members due to the high financial costs of providing care to the child. Research indicates that it costs, on average, $43,431 per year to provide care to children suffering from this disease (Cerebral Palsy Alliance 2012). Only approximately 33 percent of these costs are absorbed by the Federal government in the form of welfare programs or other supplementary care provision. This could have serious implications for children not only in developed countries where per capita incomes are much higher than the rest of the globe, but in developing countries where such costs would be absolutely impossible to provide while still attempting to ensure higher quality of life for the child suffering from Cerebral Palsy. This is why special emphasis should be placed on the financial condition of the family when seeking external care providers as loss of economic resources contribute highly to quality of life deprivation. Objectives of the Study Because children suffering from Cerebral Palsy have significant difficulties communicating and describing to others their emotional states, psychological researchers must rely on the caregiver for important information to measure how quality of life is impacted for the victim of the disease. The objective of the study under analysis is to redefine the terminology currently referred to as health-related quality of life (HRQL) to create a new assessment instrument for measuring QOL that is “disease-specific” to better measure quality of life for the child and the family members charged with their care (Yee Lim & Wong, 2009, p.27). By utilizing a self-reporting questionnaire, the objective is to assist in understanding how quality of life is impacted with individuals maintaining mild, moderate and severe instances of Cerebral Palsy. Hypotheses / Theory There are no hypotheses being tested in this particular study, as the authors acknowledge limited research data availability highlighting quality of life for children with Cerebral Palsy in Malaysia, the country of focus in the study. By acknowledging such limitations, the authors are proposing a new example to measure the differences in quality of life between childhood Cerebral Palsy patients in developed and non-developed countries. As such, there is no frame of reference by which to develop an appropriate theory or hypothesis about QOL when comparing Cerebral Palsy patients in the United Kingdom versus Malaysia. There is simply not enough data to develop an appropriate theory, opening the doors for an innovative research design. Research Methodology Twenty seven participants were selected for the study, 13 of which were male and 14 female. Age demographics ranged from three years, eight months to 10 years, eleven months. All respondents in the study were outpatient releases from The Pediatric Rehabilitation Center of the University of Malaysia Medical Center in Malaysia. At least one of the parents serving as caregivers for the youths were recruited to complete the Lifestyle Assessment Questionnaire – Cerebral Palsy (LAQ-CP), a questionnaire developed to evaluate the holistic impact of disability within children suffering from Cerebral Palsy (Yee Lim & Wong, 2009, pp.27-28). The LAQ-CP consisted of 46 different questions, with some questions modified to be relevant to local Malaysian characteristics. Using a manual that contained scoring measurements for the LAQ-CP, ranking scores from zero through four, to determine a final result that ranged from zero to 100%. Under the LAQ-CP scoring manual, a child that maintained a top score of 100% were suffering from the maximum disability recognized when suffering from Cerebral Palsy. Therefore, the study was quantitative in nature, allowing the researchers to measure quality of life statistically. Analysis The LAQ-CP scoring manual provided the tools by which to measure quality of life, where 70% representative of severe impact of the disease. Results were coded utilizing Microsoft Excel performing a t-test, significance test, and regression analysis to create statistical computations (Yee Lim & Wong, p.28). Results Only three participants indicated a score above 70 percent or higher, illustrating severe impact on quality of life. Moderately impacted respondents totaled seven patients, while mildly impacted patients represented 37 percent of the sample (10 patients). The median score, average, was 44 for the entire sample. Reporting on the LAQ-CP questionnaire indicated that the top quality of life issues facing the children suffering from the disease were the clinical burden of care, lack of physical autonomy, and economic burden. Conclusion The results of the study were not overly surprising since Malaysia maintains a high lack of services to care for patients with disabilities in this less-developed nation. Financial concerns and the burden of clinical care would be expected outcomes of the research in a region with a less developed medical care infrastructure and limited access to rehabilitation services. Compared to the United Kingdom which provides 90 percent of clinical care to individuals with disabilities (Yee Lim & Wong), Malaysian sufferers must rely on the extended family members to fill the gaps in service disparity that exists in the country. The researchers also indicate that there is a great deal of social apathy about the problem, which probably contributed to other reported quality of life issues that included social integration and schooling problems (Yee Lim & Wong). The objectives in this case were competently fulfilled, as now society has an understanding of the primary and secondary concerns about QOL in Malaysia, which was an under-represented cross-section of childhood Cerebral Palsy sufferers. Opinion The role of caregivers in developed and under-developed countries and their own quality of life when working with children suffering from the disease is important to understand the quality of care that sufferers are receiving. When family members are stressed or financially-burdened, it will definitely impact the level of care that Cerebral Palsy childhood victims receive. By understanding the most important factors that are impacting quality of life, it can assist medical practitioners and sociologists in foreign nations to begin developing the most important care-giving systems required to improve QOL. It is likely that countries such as Malaysia are unaware of where to begin when attempting to build higher quality care systems and government unsure where to invest resources (primarily) to achieve better care systems for the children. The only limitation to this study was that the researchers did not provide statistics from similar inventories (or the LAQ-CP) gained from participants in the United Kingdom. If statistics had been provided from other studies in developed countries, it could have better shown the differences between Malaysian sufferers and sufferers in such countries as the UK to help medicine and psychologists develop better systems of care in the proper order of priority. Future research should compile secondary research findings on the LAQ-CP or other similar inventories to show the public and psychologists how differences exist in developed versus less-developed countries. However, the strength of the study is that it measured lesser-known national origins to inform the public about the attitudes and concerns of family members in charge of providing care, perhaps raising public interest and empathy about the problem to coerce foreign governments to devote more resources to research and medical development. References Cerebral Palsy Alliance. (2012). Annual Report 2012. Retrieved April 6, 2013 from http://www.cerebralpalsy.org.au/__data/assets/pdf_file/0020/25751/Annual-Report- 2012.pdf Davis, Deborah W. (1997). Review of Cerebral Palsy, Part II: Identification and Intervention, Neonatal Network, 16(4), pp.19-25. Hirsh, A.T., Gallegos, J.C., Gertz, K.J., Engel, J.M. & Jensen, M.P. (2010). Symptom Burden in Individuals with Cerebral Palsy, Journal of Rehabilitation Research & Development, 47(9), pp.863-875. Mihaylov, S.L., Jarvis, S.N., Colver, A.F. & Beresford, B. (2004). Identification and Description of Environmental Factors that Influence Participation of Children with Cerebral Palsy, Developmental Medicine and Child Neurology, 46(5), pp.299-303. Newman, Christopher J., O’Regan, Myra & Hensey, Owen. (2006). Sleep Disorders in Children with Cerebral Palsy, Developmental Medicine and Child Neurology, 48(7), pp.564-580. Yee Lim, Melisa S. & Wong, Chee P. (2009). Impact of Cerebral Palsy on the Quality of Life in Patients and their Families, Neurology Asia, 14, pp.27-33. Retrieved April 4, 2013 from http://neurology-asia.org/articles/20091_027.pdf Impact of cerebral palsy on the quality of life in patients and their families 1Melisa Seer Yee Lim MBBS (Malaya), 2Chee Piau Wong MRCPCH PhD 1Department of Pediatrics, University Malaya, Kuala Lumpur; 2School of Medicine and Health Sciences, Monash University, Petaling Jaya, Malaysia Abstract Measuring QOL is a field that is gaining interest among researchers worldwide. This is a prospective, descriptive study that aimed to look at the impact of health-related quality of life (HRQL) of cerebral palsy in the lives of patients and their families. Methods: Patients attending the Paediatric Rehabilitation Clinic at University of Malaya Medical Centre were interviewed prospectively using the Lifestyle Assessment Questionnaire – Cerebral Palsy. Results: A total of 27 patients were interviewed. Three (11.1%) patients reported severely affected quality of life. Seven (25.9%) patients reported moderately affected quality of life and 10 (37%) reported mildly affected quality of life. The worst score of 76 were reported in 2 patients. The best score of 11 was reported in one patient. Conclusion: The impairment and disability due to cerebral palsy is likely to be similar in both developing and developed countries. However, the quality and type of care received by patients are likely to determine the resultant handicap and the implication on the quality of life Neurology Asia 2009; 14 : 27 – 33 Address correspondence to: Associate Professor Wong Chee Piau, Ph.D. (UK), School of Medicine and Health Sciences, Monash University, Jalan Lagoon Selatan, Bandar Sunway, Petaling Jaya 46150, Malaysia INTRODUCTION Cerebral palsy1 is one of the most common chronic disabling condition of childhood.2-4 A prevalence of 1.2 to 2.5 per 1000 school age children has been quoted, but the rates vary from country to country and also within countries.2-6 Traditional research often focused on the reduction or relieve of disabilities associated with this condition. However disabilities affect significantly on the children’s independence; and consequently on the lives of their caregivers. Traditional clinical researches are therefore not suitable to measure the impact of disability in cerebral palsy; which are better measured with other tools for example health status or quality of life (QOL).7-9 The measurement of QOL in children lags behind that of adults. In addition very few of these measurement are appropriate for children with developmental disabilities.10 Cerebral palsy can have a tremendous impact on the child’s capacity to carry out activities of daily living (ADL); hence the impact on the QOL of the child and also his family. Various theoretical models of disability and chronic illness have been developed specifically for children with disabilities especially for children with cerebral palsy.7,9,11-12 The terminology ‘health-related quality of life’ (HRQL) refers to the health aspect of QOL, excluding issues like religious beliefs and practices.13 The common challenge faced by researchers in the field of cerebral palsy is the inability of most children to communicate themselves thus, the need to rely on the caregiver for information regarding this aspect of health care.13 The measures developed aimed to capture the interaction between the child’s condition, developmental stage and his social and cultural settings which give rise to disadvantages or handicaps, as classified under The International Classification of Impairments, Disabilities, and Handicaps (ICIDH).14 HRQL assessment tools are divided into 2 types, either generic or diseasespecific. In this case, a disease-specific tool would be more appropriate in measuring the morbidity faced by the children and the impact of it on the family members. METHODS This is a prospective descriptive study of outpatients from the Paediatric Rehabilitation Clinic of University Malaya Medical Center diagnosed clinically to have cerebral palsy. Only patients whose ages ranged from 3 to 10 years old were included. Either one of the parents was interviewed anonymously using the Lifestyle Assessment Questionnaire-Cerebral Palsy (LAQCP), a disease-specific type of questionnaire that Neurology Asia June 2009 28 was developed for the purpose of evaluating impact of disability in children with cerebral palsy.16 Mackie et al developed this questionnaire specifically for use in the North of England Collaborative Cerebral Palsy Survey in order to specifically capture the impact of impairment and disability on children with cerebral palsy and on their families.17 This questionnaire has been shown to be a reliable tool in measuring the disadvantages experienced by children with cerebral palsy in North England.7 The LAQ-CP is a 46-item questionnaire, organized into six dimensions through the application of multidimensional scaling.7,16 Dimensions are named to reflect elements of the ICIDH classification with some modifications to reflect the experiences of the children and their families. The impact of the child’s problems on the family emerges as an important issue. Some of the questions in the questionnaire were modified to suit local context. Each response to the items in the questionnaire was assigned a score from 0-4 using a scoring system as described in the LAQ-CP manual. Conversion of these raw scores into a final standard score, known as Lifestyle Assessment Score (LAS) is detailed in the manual. The LAS is expressed as a percentage score out of 100. A maximally disadvantaged child scores 100%. Using the descriptions of the score in the manual, an arbitrary classification of the quality of life according to the LAS Score was created as follows: Good (70%). Statistical analysis of data was done using Microsoft Excel. The t-test, the significance test and correlation/regression analysis were used for statistical calculations. p values 70 2 1 3 Mean score 47.15 42.79 44.89 Std. Dev. 20.37 18.78 19.31 Median score 50 44 44 Groups compared: Males and Females (t-test value 0.5786); Males and overall (t-test value 0.3406); Females and overall (t-test value 0.3334), all p-value>0.05 the paediatric population. An array of services like health visitor, home help, social worker, community nurse and voluntary services are available to assist the parents or caregivers of children with cerebral palsy. In addition various non-governmental organizations are set up to provide local support to these children and their families. For example, Scope, a non governmental organization in England and Wales focuses on people with cerebral palsy.18 The services provided include assistance in daily living, education and work, just to name a few. Professional respite care is also available for the carers to allow them to take a break from the daily chores of taking care of the children. In Malaysia, there is lack of these services for patients with disability, e.g. cerebral palsy or to their parents or carers. This is probably due to lack of awareness and complicated by limited resources. Limited resources e.g. money and skilled manpower are the main problems faced by our government in providing satisfactory healthcare to these people. Consequently, the response has always been managing the disabilities and complication as they arise rather than minimizing or preventing disability. In addition these services provided are confined mainly to tertiary and major general hospitals and 31 are not readily accessible to all who require it. The extended family system in Malaysia is crucial in filling these service vacuums. In this study, 5 out of 27 of the families had crucial support for help if the need arises. Lack of awareness and apathy among the public are also contributing factors in why disabled children received little support from the public. The financial burden borne by the families of patients is also not adequately addressed locally. Figure 2: Dimensional breakdown of LAS for each individual patient Figure 3: LAS and age for overall group LAS Neurology Asia June 2009 32 The Welfare Department subsidizes certain orthoptic equipments and supports like standing frame, orthoses and wheelchair etc, which may be necessary in helping them attain functional use of their limbs and bodies. However, there are other needs which are not addressed. For example, travel expenditure for hospital, rehabilitation and clinic attendances, modification of the house to allow greater mobility and also access to crucial amenities. In UK, child with cerebral palsy and other disabilities receive various disability related allowances to lessen the financial burden.18 In conclusion, the LAQ-CP questionnaire used in this study has proved to be useful in recording the quality of life in patients with cerebral palsy in Malaysia. This study has highlighted several differences in the management of cerebral palsy between Malaysia, a developing nation and United Kingdom, a developed nation. Time constraint has limited this to a descriptive study. With adequate sample, further study can be done to look at the dynamics of this condition and their influence in the QoL, for example, the relationship between the type of cerebral palsy and QoL. Figure 4: LAS and age for female group Figure 5: LAS and age for male group LAS LAS 33 ACKNOWLEDGEMENTS We would like to acknowledge Miss Teoh Soh Lan’s valuable help in procuring the LAQ-CP manual, without which, this study would not be possible. We also owe special thanks to the doctors, nurses and staffs of the Paediatric Rehabilitation Clinic of University Malaya Medical Centre for their help and advice throughout the period of this study. REFERENCES 1. Lissauer T, Clayden G. Illustrated textbook of Paediatrics. 2nd ed. St Louis: Mosby, 2001. 2. Pharoah POD, Platt MJ, Cooke T. The changing epidemiology of cerebral palsy. Arch Dis Child Fetal Neonatal Ed 1996; 75:F169-73. 3. Hagberg B, Hagberg G, Olow I. The changing panorama of cerebral palsy in Sweden.VI. Prevalence and origin during the birth year period 1983-1986. Acta Paediatr Scand 1993; 82:387-93 4. Kavcic P, Perat MV. Prevalence of cerebral palsy in Slovenia: birth years 1981 to 1990. Dev Med Child Neurol 1998; 40:459-63 5. Nelson KB, Swaiman KF, Russman BS. Cerebral palsy. In: Swaiman KF, ed: Pediatric neurology: principles and practice. 2nd ed. St Louis:Mosby, 1994. 6. Badawi N, Watson L, Petterson B, et al. What constitutes cerebral palsy? Dev Med Child Neurol 1998; 40: 520-27. 7. Mackie PC, Jessen, Jarvis SN. The lifestyle assessment questionnaire: an instrument to measure the impact of disability of the lives of children with cerebral palsy and their families. Child Care Health Dev 1998; 24(6): 473-86 8. McCarthy ML, Silberstein CE, Atkins EA, Harryman SE, Sponseller PD, Hadley-Miller NA. Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 2002; 44: 468-76 9. Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler- Spira DJ. Health-related quality of life and functional outcomes measures for children with cerebral palsy. Dev Med Child Neurol 2001; 43: 601-8 10. Berzon RA, Simeon GP, Simpson RL, Donnelly MA, Tilson HH. The quality of life bibliography and indexes: 1993 update. Qual Life Res 1993; 4(1): 53-74 11. Bjornson KF, McLaughlin JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol 2001; 8(5): 183-93 12. Msall ME, DiGaudio Rogers BT, et al. The Functional Independence Measure for Children (WeeFIM): Conceptual basis and pilot use in children with developmental disabilities. Clin Pediatr 1994; 33(7): 421-30 13. McLaughlin JF, Bjornson KF. Quality of life and developmental disabilities (editorial). Dev Med Child Neurol 1998; 40: 435 14. International Classification of Impairments, Disabilities and Handicap: a manual of classification relating to the consequences of disease. Geneva: World Health Organisation, 1980. 15. Guyatt GH, Naylor CD, Juniper E, Heyland D, Jaeschke R, Cook D. How to use articles about healthrelated quality of life. JAMA 1997; 277:1232-7 16. Mackie PC, Jessen EC, Jarvis SN. The lifestyle assessment questionnaire (LAQ-CP) manual. Newcastle upon Tyne: North of England Collaborative Cerebral Palsy Survey, 1998. 17. Mackie PC, Jessen EC, Jarvis SN. Creating a measure of impact of childhood disability: statistical methodology. Public Health 2002; 116(2): 95-101 18. www.scope.org.uk 19. Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health & Quality of Life Outcomes 2007;5:43. 20. Young B, Rice H, Dixon-Woods M, Colver AF. Parkinson KN. A qualitative study of the healthrelated quality of life of disabled children. Dev Med Child Neurol 2007; 49(9):660-5. 21. Varni JW, Burwinkle TM, Sherman SA, et al. Healthrelated quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol 2005; 47(9):592-7. 22. Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Archives of Physical Medicine & Rehabilitation 2005; 86(5):940-5. THIS STUDY AVAILABLE AT: http://neurology-asia.org/articles/20091_027.pdf Read More