The Role of Pain in Reduced Quality of Life and Depressive Symptomology in Children With Spina Bifida

Oddson, Bruce; Clancy, Christine; McGrath, Patrick J.

doi:10.1097/01.ajp.0000210929.43192.5d

Cited by 54 publications

(54 citation statements)

References 45 publications

(45 reference statements)

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“…Parents of the 50 subjects were interviewed in person during the MM clinic using two HRQOL outcome tools: the PedsQL TM Version 4.0 [7,[24][25][26][27] parent version for young children (ages 5-7), children (ages [8][9][10][11][12], and the teen report (ages [13][14][15][16][17][18]; and the PODCI Version 2.0 [10] parent form for children (ages 2-18). Because of concerns about time and length of the instrument, 22% of the parents declined to complete the PODCI questionnaire.…”

Section: Methodsmentioning

confidence: 99%

“…Multiple studies [4,6,[15][16][17][18][19][20][21][22] have looked at quality of life for persons with MM using a variety of outcome tools for parents and for youth. Several studies have suggested an inverse relationship [18,20,22] between health-related quality of life (HRQOL) and the lesion level, whereas others report no [4,6,17] or only a partial [15] relationship between the two.…”

Section: Introductionmentioning

confidence: 99%

“…Several studies have suggested an inverse relationship [18,20,22] between health-related quality of life (HRQOL) and the lesion level, whereas others report no [4,6,17] or only a partial [15] relationship between the two. Using the Spina Bifida Health Related Quality of Life Questionnaire, Schoenmakers et al [21] found independent mobility was the most important determining factor for HRQOL.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…This tool was used by Oddson et al [18] in a study of HRQOL and depressive symptoms in children with spina bifida. Their findings showed a low HRQOL for these children compared with other chronically ill children [18]. Another common instrument that measures HRQOL is the Pediatric Outcomes Data Collection Instrument Version 2.0 (PODCI) [10], which was developed by a joint effort of the American Academy of Orthopaedic Surgeons and the Pediatric Orthopaedic Society of North America.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

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Background To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals. Questions/purposes We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups. Methods We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5-18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected. Results We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

View full text Add to dashboard Cite

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Pain among children and adults living with arthrogryposis multiplex congenita: A scoping review

Cirillo

Collins

Sawatzky

et al. 2019

American J of Med Genetics Pt C

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Clinical interventions and research have mostly focused on the orthopedic and genetic outcomes of individuals with arthrogryposis multiplex congenita (AMC), and although pain has gained recognition as an important issue experienced by individuals with AMC, it has received little attention within the AMC literature. The aims of this scoping review were to describe the pain experiences of children and adults with AMC, to identify pain assessment tools and management techniques, and document the impact of pain on participation in everyday activities among children and adults with AMC. A search of the literature was conducted in four search engines and identified a total of 89 articles. Once study eligibility was reviewed, 21 studies met the selection criteria and were included in this review. Pain appears to be more commonly experienced in adults with AMC compared with children with AMC, with individuals having undergone multiple corrective procedures self-reporting pain more often. In adult populations, musculoskeletal chronic pain is a significant problem, resulting in restrictions in activities of daily living, mobility, and participation. Researchers and clinicians must agree on the use of validated measures appropriate for evaluating pain in AMC and the use of appropriate pain management techniques to relieve pain. Pediatric studies should focus on determining how commonly pain is experienced in infants, children, and adolescents with AMC. Pain in adults with AMC should be acknowledged to offer proper client-centered interventions throughout the lifespan. K E Y W O R D S adult, arthrogryposis multiplex congenita, child, pain, participation

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Quality of life in individuals with spina bifida: A research update

Sawin

Bellin

2010

Dev Disabil Res Revs

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Quality of life (QOL) is an important concept for individuals with chronic health conditions. Measuring and supporting QOL in children, adolescents, and adults with spina bifida (SB) may be especially unique given the broad range of complex health and rehabilitative challenges they encounter. This article provides a research update on (a) conceptual and methodological considerations in measuring QOL and a related construct, health-related quality of life (HRQOL); (b) the state of the science in QOL and HRQOL for individuals with SB; and (c) gaps in the evidence and implications for future research. A synthesis of the literature was limited by the use of 17 different QOL and HRQOL instruments to measure these constructs and notable weaknesses in the most frequently used condition-specific HRQOL instrument. However, a tentative pattern of lower scores on the physical domain of HRQOL measures in individuals with SB in comparison to peers emerged, while discrepancies in emotional, social, and school domains varied by study. Recommendations for future research include using a lifespan approach to expand QOL studies to older adults with SB and focusing on intervention research to prevent or treat decreased HRQOL.

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The Role of Pain in Reduced Quality of Life and Depressive Symptomology in Children With Spina Bifida

Abstract: The unmanaged pain in children with spina bifida can have a substantial negative impact on quality of life. Better treatment and surveillance of pain and depression symptoms may significantly improve quality of life.

Cited by 54 publications

References 45 publications

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Pain among children and adults living with arthrogryposis multiplex congenita: A scoping review

Quality of life in individuals with spina bifida: A research update

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