A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity
ContextIndividuals treated for pediatric craniopharyngioma, a rare, grade 1 brain tumor, frequently develop hypothalamic obesity, a complication often recalcitrant to intervention. Although hypothalamic obesity is known to adversely impact quality of life, less is known about how caregivers and pati...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-05-01
|
| Series: | Frontiers in Endocrinology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fendo.2022.876770/full |
| _version_ | 1811305380605591552 |
|---|---|
| author | Meghan Craven Julia H. Crowley Lucas Chiang Cassie Kline Fatema Malbari Matthew C. Hocking Matthew C. Hocking Shana E. McCormack |
| author_facet | Meghan Craven Julia H. Crowley Lucas Chiang Cassie Kline Fatema Malbari Matthew C. Hocking Matthew C. Hocking Shana E. McCormack |
| author_sort | Meghan Craven |
| collection | DOAJ |
| description | ContextIndividuals treated for pediatric craniopharyngioma, a rare, grade 1 brain tumor, frequently develop hypothalamic obesity, a complication often recalcitrant to intervention. Although hypothalamic obesity is known to adversely impact quality of life, less is known about how caregivers and patients experience this condition.ObjectiveOur goal was to examine the approaches that families take towards weight management and the impact on social function in individuals with craniopharyngioma and obesity. Individuals with craniopharyngioma without obesity were included as a comparison.Subjects and MethodsAdult caregivers of children <18y with craniopharyngioma completed a web-based survey posted by a patient advocacy organization between February and July 2020. Questions related to the child’s diagnosis, medications, lifestyle modifications, and social function along with research priorities. Descriptive statistics were generated. Linear regression was used to assess the independent effects of obesity and other covariates on social function.ResultsOf 106 respondents, 60 (57%) reported their child had obesity at the time of survey completion. In contrast, only 6 (5.7%) had obesity prior to craniopharyngioma diagnosis. A majority (92%) of those with obesity had tried limiting calories or carbohydrates; 31% and 69% found these helpful, respectively. Thirty-eight percent had tried weight loss medications (stimulants, metformin, GLP1R-agonists, and topiramate) and 48% found at least one helpful. Both stimulant and anti-depressant use were reported more frequently with obesity. An index (T-score) reflecting social function was lower in the cohort than a population reference, 41 (SD 11) vs. 50 (SD 10), p<0.001. In a linear model, both older age and obesity were independently associated with greater social impairment. Ninety-four percent of respondents caring for a child with obesity (and 79% of all respondents) identified “improving treatments and prevention for hypothalamic obesity” as a key research priority.ConclusionsOnly a minority of individuals with hypothalamic obesity had trialed medication, even though many reported that lifestyle modification was inadequate. Furthermore, social function was significantly impaired overall in survivors compared to a reference cohort, and even more so in individuals with obesity. These findings highlight the opportunity to improve social functioning as an additional potential benefit of improved treatments for hypothalamic obesity. |
| first_indexed | 2024-04-13T08:24:21Z |
| format | Article |
| id | doaj.art-309c55f371ea4e828dbd0be4be0d21f8 |
| institution | Directory Open Access Journal |
| issn | 1664-2392 |
| language | English |
| last_indexed | 2024-04-13T08:24:21Z |
| publishDate | 2022-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Endocrinology |
| spelling | doaj.art-309c55f371ea4e828dbd0be4be0d21f82022-12-22T02:54:31ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922022-05-011310.3389/fendo.2022.876770876770A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic ObesityMeghan Craven0Julia H. Crowley1Lucas Chiang2Cassie Kline3Fatema Malbari4Matthew C. Hocking5Matthew C. Hocking6Shana E. McCormack7Division of Endocrinology and Diabetes, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of Endocrinology and Diabetes, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of Endocrinology and Diabetes, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of Oncology, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of Neurology and Developmental Neurosciences, Department of Pediatrics, Texas Children’s Hospital, Houston, TX, United StatesDivision of Oncology, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDepartment of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of Endocrinology and Diabetes, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesContextIndividuals treated for pediatric craniopharyngioma, a rare, grade 1 brain tumor, frequently develop hypothalamic obesity, a complication often recalcitrant to intervention. Although hypothalamic obesity is known to adversely impact quality of life, less is known about how caregivers and patients experience this condition.ObjectiveOur goal was to examine the approaches that families take towards weight management and the impact on social function in individuals with craniopharyngioma and obesity. Individuals with craniopharyngioma without obesity were included as a comparison.Subjects and MethodsAdult caregivers of children <18y with craniopharyngioma completed a web-based survey posted by a patient advocacy organization between February and July 2020. Questions related to the child’s diagnosis, medications, lifestyle modifications, and social function along with research priorities. Descriptive statistics were generated. Linear regression was used to assess the independent effects of obesity and other covariates on social function.ResultsOf 106 respondents, 60 (57%) reported their child had obesity at the time of survey completion. In contrast, only 6 (5.7%) had obesity prior to craniopharyngioma diagnosis. A majority (92%) of those with obesity had tried limiting calories or carbohydrates; 31% and 69% found these helpful, respectively. Thirty-eight percent had tried weight loss medications (stimulants, metformin, GLP1R-agonists, and topiramate) and 48% found at least one helpful. Both stimulant and anti-depressant use were reported more frequently with obesity. An index (T-score) reflecting social function was lower in the cohort than a population reference, 41 (SD 11) vs. 50 (SD 10), p<0.001. In a linear model, both older age and obesity were independently associated with greater social impairment. Ninety-four percent of respondents caring for a child with obesity (and 79% of all respondents) identified “improving treatments and prevention for hypothalamic obesity” as a key research priority.ConclusionsOnly a minority of individuals with hypothalamic obesity had trialed medication, even though many reported that lifestyle modification was inadequate. Furthermore, social function was significantly impaired overall in survivors compared to a reference cohort, and even more so in individuals with obesity. These findings highlight the opportunity to improve social functioning as an additional potential benefit of improved treatments for hypothalamic obesity.https://www.frontiersin.org/articles/10.3389/fendo.2022.876770/fullhypothalamic obesitypediatric craniopharyngiomasocial functionbrain tumorhypopituitarism |
| spellingShingle | Meghan Craven Julia H. Crowley Lucas Chiang Cassie Kline Fatema Malbari Matthew C. Hocking Matthew C. Hocking Shana E. McCormack A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity Frontiers in Endocrinology hypothalamic obesity pediatric craniopharyngioma social function brain tumor hypopituitarism |
| title | A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity |
| title_full | A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity |
| title_fullStr | A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity |
| title_full_unstemmed | A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity |
| title_short | A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity |
| title_sort | survey of patient relevant outcomes in pediatric craniopharyngioma focus on hypothalamic obesity |
| topic | hypothalamic obesity pediatric craniopharyngioma social function brain tumor hypopituitarism |
| url | https://www.frontiersin.org/articles/10.3389/fendo.2022.876770/full |
| work_keys_str_mv | AT meghancraven asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT juliahcrowley asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT lucaschiang asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT cassiekline asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT fatemamalbari asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT matthewchocking asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT matthewchocking asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT shanaemccormack asurveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT meghancraven surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT juliahcrowley surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT lucaschiang surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT cassiekline surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT fatemamalbari surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT matthewchocking surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT matthewchocking surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity AT shanaemccormack surveyofpatientrelevantoutcomesinpediatriccraniopharyngiomafocusonhypothalamicobesity |