Quality of life and mental health in emerging adults with cerebral palsy compared to the general population

Schmidt, Silke; Markwart, Henriette; Rapp, Marion; Guyard, Audrey; Arnaud, Catherine; Fauconnier, J.; Thyen, Ute; Hahm, Stefanie; Bagazgoïtia, Nicolas Vidart d’Egurbide; Muehlan, Holger

doi:10.1186/s12955-022-01961-7

Cited by 7 publications

(6 citation statements)

References 65 publications

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“…Satisfaction with healthcare was moderate to good and almost consistently higher for the sample of young adults with CP as compared with data of young adults sampled from the general population. Likewise, in a recent study from our research group, we also found better quality of life for the environmental domain in young adults with CP as compared to reference values for young adults from a sample of the general population ( 37 ). The Transition Collaborative Group in UK used a different approach measuring satisfaction with healthcare: the Mind the Gap scale measures the difference or “gap” between a young person’s ideal service and the service they have received.…”

Section: Discussionsupporting

confidence: 77%

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study

Muehlan,

Alvarelhao,

Arnaud

et al. 2024

Front. Med.

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BackgroundYoung people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare.MethodsWithin a European multicenter observational study, 357 young adults with cerebral palsy aged 19–28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study.ResultsWe identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality.ConclusionYoung adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.

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Section: Discussionsupporting

confidence: 77%

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study

Muehlan,

Alvarelhao,

Arnaud

et al. 2024

Front. Med.

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“…Contrary to these research studies, Schmidt et al ( 20 ) found general equal levels of mental health in young and adult patients with CP when compared to healthy controls. They suggested the occurrence of a “disability paradox” that showed the higher capacity of patients to tolerate and adapt to adversity better than healthy people.…”

Section: Introductionmentioning

confidence: 81%

Psychiatric symptoms in adult patients with cerebral palsy: A cohort study

Pizzighello

Uliana²,

Michielotto³

et al. 2022

Front. Neurol.

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BackgroundPatients with cerebral palsy (CP) have an increased risk of developing mental health disorders.AimsThis paper is aimed to investigate the occurrence of psychiatric symptoms in adults with CP and to explore the relation between clinical and psychosocial variables.Methods and proceduresWe included 199 adults with a diagnosis of CP. The chi-square and the Mann-Whitney U tests were used to compare clinical and psychosocial variables, the level of perceived disability, and the type of observed parental style in patients with and without psychiatric symptoms. Logistic regression analysis was used to identify variables that could predict the occurrence of mental health disorders.Outcome and resultsAnxiety and psychosis were the most represented disorders. Age, living status, assumption of drugs, motor, manual, and global impairment were significantly different between patients with and without psychiatric symptoms. Similarly, a different parental style was observed between the two groups. Logistic regression indicated that living status, prescribed drugs, parental style, and the perceived disability in getting along with others predicted the occurrence of psychiatric symptoms.Conclusions and implicationsResults suggest that patients with and without psychiatric symptoms have different clinical and psychosocial characteristics. Some variables should be considered as potentially affecting the mental health of patients with CP.

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“…Depression is an ongoing MH concern in the pediatric CP population, with some studies reporting higher rates than in general populations . Factors such as pain, family functioning, fatigue, and the impact of the COVID-19 pandemic contribute to depression and anxiety for many individuals .…”

Section: Discussionmentioning

confidence: 99%

Mental Health Diagnoses Risk Among Children and Young Adults With Cerebral Palsy, Chronic Conditions, or Typical Development

Bhatnagar,

Mitelpunkt,

Rizzo

et al. 2024

JAMA Netw Open

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ImportanceMental health (MH) issues in children with cerebral palsy (CP) are poorly understood compared with other pediatric populations.ObjectiveTo examine MH diagnosis code assignment among children and young adults with CP and compare with typically developing (TD) and chronic condition (CC) pediatric populations.Design, Setting, and ParticipantsThis case-control study used International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes to create a CP case set and CC and TD control sets using electronic health record data of children and young adults from a large tertiary care children’s hospital in the midwestern United States between 2010 and 2022. Case-control matching was performed to control for demographic factors. Data were analyzed from June to December 2023.ExposuresAll MH diagnosis codes were mapped to ICD-10-CM and categorized using Clinical Classifications Software Refined (CCSR).Main Outcomes and MeasuresThe incidence rates of MH CCSR categories were calculated. Descriptive and comparative statistics were used to evaluate the significance and odds associated with factors.ResultsData from 216 794 individuals (mean [SD] baseline age, 4.3 [5.1] years; 118 562 [55%] male) were analyzed, including 3544 individuals with CP, 142 160 individuals with CC, and 71 080 TD individuals. The CP cohort spread across Gross Motor Function Classification System (GMFCS) levels I (981 individuals [28%]), II (645 individuals [18%]), III (346 individuals [10%]), IV (502 individuals [14%]), and V (618 individuals [17%]). Rates varied significantly for anxiety (824 individuals with CP [23%]; 25 877 individuals with CC [9%]; 6274 individuals with TD [18%]), attention-deficit/hyperactivity disorder (534 individuals with CP [15%]; 22 426 individuals with CC [9%]; 6311 individuals with TD [16%]); conduct or impulse disorder (504 individuals with CP [14%]; 13 209 individuals with CC [5%]; 3715 individuals with TD [9%]), trauma or stress disorders (343 individuals with CP [10%]; 18 229 individuals with CC [8%]; 5329 individuals with TD [13%]), obsessive-compulsive disorder (251 individuals with CP [7%]; 3795 individuals with CC [1%]; 659 individuals with TD [3%]), depression (108 individuals with CP [3%]; 12 224 individuals with CC [5%]; 4007 individuals with TD [9%]), mood disorders (74 individuals with CP [2%]; 4355 individuals with CC [2%]; 1181 individuals with TD [3%]), and suicidal ideation (72 individuals with CP [2%]; 7422 individuals with CC [5%]; 3513 individuals with TD [5%]). There was significant variation in odds of MH diagnoses by GMFCS level (I-II vs III-V: odds ratio [OR], 1.23; 95% CI, 1.09-1.40; P = .001). Among individuals with CP, males were more likely than females to have diagnosis codes for conduct or impulse disorders (OR, 1.41; 95% CI, 1.16-1.73) and attention-deficit/hyperactivity disorder (OR, 1.41 [95% CI, 1.15-1.73]). Black individuals, compared with White individuals, were more likely to have diagnoses for obsessive-compulsive disorder (OR, 1.57 [95% CI, 1.14-2.16]), other mood disorders (OR, 1.85 [95% CI, 1.01-3.38]), and trauma or stress disorders (OR, 1.94 [95% CI, 1.44-2.63]). Odds for trauma or stress disorders were elevated for individuals who identified as other races compared with White individuals (OR, 2.80 [95% CI, 2.03-3.87]).Conclusions and RelevanceIn this case-control study of children and young adults with CP and matched comparisons, anxiety and conduct or impulse diagnoses were higher in individuals with CP. The lower diagnosis rates of depression and suicidal ideation may indicate underdiagnosis among individuals with CP. There is likely a need for assessment tools that are more suitable for children with CP.

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Quality of life and mental health in emerging adults with cerebral palsy compared to the general population

Cited by 7 publications

References 65 publications

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study

Psychiatric symptoms in adult patients with cerebral palsy: A cohort study

Mental Health Diagnoses Risk Among Children and Young Adults With Cerebral Palsy, Chronic Conditions, or Typical Development

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