Parental Perceptions of the Efficacy of Methylphenidate on Health-Related Quality of Life in Survivors of Paediatric Brain Tumour
Abstract
:1. Introduction
1.1. Post Brain Tumour Late Effects
1.2. Pharmacological Intervention
1.3. Evaluation Rationale
1.4. Evaluation Aims
- Gather preliminary data on parental perception of the impact of methylphenidate on HRQoL in this population.
- Gather preliminary data on the parental acceptability of methylphenidate as an interventional medium.
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. Materials
- Pediatric Quality of Life Parent Report form (PedsQL). The PedsQL is a 23-item scale that explores four dimensions; school, emotional, physical, and social functioning. This reliable and valid multidimensional tool has frequently been used in both healthy populations and children and adolescents with cancer [22,23]. The PEDS-QL was completed by parents at baseline, at six weeks, and again at six months (± 6 weeks). Data from baseline and six months are presented in the current study.
- Experiences of Methylphenidate Treatment Questionnaire—Parent Form (EMTQ-parent form) (Appendix C). A bespoke questionnaire was designed for the study that explored parents’ views on the impact that the methylphenidate treatment had on their child’s HRQoL. Questionnaire development was informed by the Experiences of Methylphenidate Treatment Questionnaire developed for use with children. A focus group and individual consultations were held with parents prior to the development of this questionnaire. The questionnaire required parents to retrospectively reflect on their experiences of the service pre and post treatment delivery, and to evaluate the effect parents perceived that methylphenidate had on their children. Parents were provided the questionnaire at six months from the date of their child starting methylphenidate (±6 weeks).
Procedure
2.4. Data Analysis
2.4.1. Quantitative Data
2.4.2. Qualitative Data
2.5. Ethical Considerations
3. Results
3.1. Parental Perception of Effect of Methylphenidate on HRQoL
3.1.1. Quantitative Data
3.1.2. Qualitative Data
3.1.3. Physical Effects
3.1.4. Emotional Impact
3.1.5. Social Impact
3.1.6. Cognitive and Academic Impact
3.2. Parental Views on Treatment Acceptability
4. Discussion
- Gather preliminary data on parental perception of the impact of methylphenidate on HRQoL in this population.
- Gather preliminary data on the parental acceptability of methylphenidate as an interventional medium.
4.1. Parental Perception of the Impact on HRQoL
4.2. Physical Impact of Methylphenidate
4.3. Emotional and Social Function
4.4. Cognitive and Academic Function
4.5. Acceptability of Treatment
4.6. Concerns about Treatment
4.7. Strengths, Limitations and Future Directions
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Eligibility Criteria for Trial of Methylphenidate Treatment
Appendix A.1. Inclusion Criteria
- Participant has been diagnosed with a CNS tumour in the previous 10 years, counting from diagnosis date.
- Patient is aged between 6 years 0 months and 16 years 0 months at start of methylphenidate treatment.
- Has been off therapy/active treatment for CNS tumour for 12 months at the start of methylphenidate and has a likely life expectancy of > 5 years.
- No known signs of clinical or radiological tumour progression at screening for methylphenidate.
- English is the sole or primary language (enables provision of valid psychometric assessment).
- Patient and family have provided assent/consent for trial of methylphenidate.
- Neurocognitive impairment of processing speed or attention as assessed by:
- Clinically significant loss of previous function in processing speed and/or attention as shown by repeat psychometric assessment or estimate of premorbid ability.
- Discrepancy between the General Ability Index (GAI) and Cognitive Processing Index (CPI) (GAI > CPI) that is statistically significant at p = 0.05 for age.
Appendix A.2. Exclusion Criteria
- Contraindications to methylphenidate medication as per current BNF for Children (BNFC) and NICE Guideline 87:
- Family history of tic disorder
- Glaucoma (history in family from an early age)
- Current antidepressant or anxiolytic use
- Significant problems maintaining weight or previous eating disorder
- History of substance misuse
- Recent or current poorly controlled seizures.
- History of cardiac issues
- Pregnancy: whilst pregnancy and breastfeeding are not listed as contraindications in the BNFC, methylphenidate is listed as ‘Limited experience—avoid unless potential benefit outweighs risk’. Prospective patients known to be pregnant or breastfeeding at screening/registration will not be offered methylphenidate.
- Significant mental health difficulties (e.g., clinically severe depression, psychosis).
- Diagnosis of Attention Deficit/Hyperactivity Disorder or Autism Spectrum Disorder
- Full Scale Intelligence Quotient (FSIQ) of <50.
- Concerns about family ability to safely store or administer methylphenidate, or to report side effects appropriately/Concerns about familial substance misuse.
Appendix B
Appendix C. Experience of Methylphenidate Treatment Questionnaire
- What were the biggest difficulties in your child’s life before taking methylphenidate?
- How did you know when the methylphenidate started working (if it did)?
- What were the first things you noticed?
- How did you notice these things?
- Has methylphenidate had an impact on your child’s social life, and if so how?
- Has methylphenidate had an impact on your child’s independence, and if so how?
- Has methylphenidate had an impact on your child’s mood, and if so, how?
- Has methylphenidate affected your child’s confidence, and if so how?
- Has methylphenidate impacted upon your child’s school life, and if so how?
- Has methylphenidate changed anything about how you think your child feels about themselves, and if so how?
- Has methylphenidate had an impact on your child’s relationships, and if so how?
- Has methylphenidate affected your child’s fatigue levels, and if so how?
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Diagnosis | n | % | |
---|---|---|---|
Medulloblastoma | 1 | 10 | |
Ependymoma | 3 | 30 | |
Low grade glioma | 5 | 50 | |
Pineoblastoma | 1 | 10 | |
Characteristics | Mean | Standard Error (SE) | Range |
Age at Diagnosis (years) | 7.2 | 1.67 | 1–16 |
Years Since Diagnosis (years) | 5.8 | 1.12 | 1–12 |
Age Commencing MPH (years) | 13 | 0.95 | 7–17 |
Duration of Methylphenidate Treatment (months) | 6.33 | 0.27 | 4.5–7.5 |
IQ | |||
Verbal IQ (WISC IV VCI) | 94 | 3.5 | 73–114 |
Perceptual IQ (WISC IV PRI) | 95.8 | 1.7 | 88–104 |
Working Memory (WISC IV WMI) | 95 | 2.5 | 82–104 |
Processing Speed (WISC IV PSI) | 76.6 | 3.0 | 70–91 |
PedsQL Domain | Mean | SD | t (df) | p | 95% CI of the Difference | |
---|---|---|---|---|---|---|
Lower | Upper | |||||
Pre/Post Physical function | −9.99 | 17.52 | −1.80(9) | 0.11 | −22.52 | 2.54 |
Pre/Post emotional function | −11.94 | 14.32 | −2.64(9) | 0.03 * | −22.18 | −1.70 |
Pre/Post social function | −8.5 | 11.32 | −2.38(9) | 0.04 * | −16.60 | −0.40 |
Pre/Post school function | −12.25 | 12.16 | −3.19(9) | <0.01 * | −20.95 | −3.55 |
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Smith, L.; Verity, S.J. Parental Perceptions of the Efficacy of Methylphenidate on Health-Related Quality of Life in Survivors of Paediatric Brain Tumour. Psychoactives 2022, 1, 31-44. https://doi.org/10.3390/psychoactives1010004
Smith L, Verity SJ. Parental Perceptions of the Efficacy of Methylphenidate on Health-Related Quality of Life in Survivors of Paediatric Brain Tumour. Psychoactives. 2022; 1(1):31-44. https://doi.org/10.3390/psychoactives1010004
Chicago/Turabian StyleSmith, Lauren, and Sarah J. Verity. 2022. "Parental Perceptions of the Efficacy of Methylphenidate on Health-Related Quality of Life in Survivors of Paediatric Brain Tumour" Psychoactives 1, no. 1: 31-44. https://doi.org/10.3390/psychoactives1010004