A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization

Jimena Goldstine; Kari Knox; Joke Beekman; Hanny Cobussen-Boekhorst; Alessio Conti; Mikel Gray; Gary Inglese; Amanda England; Gianna Rodriguez; Justin Stanley; Stephanie Vaughn; Susan E. Howlett; Kenneth Rockwood

doi:10.1016/j.jval.2020.10.023

A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization

Jimena Goldstine, Kari Knox, Joke Beekman, Hanny Cobussen-Boekhorst, Alessio Conti, Mikel Gray, Gary Inglese, Amanda England, Gianna Rodriguez, Justin Stanley, Stephanie Vaughn, Susan E. Howlett, Kenneth Rockwood

Producción científica: Contribución a una revista › Artículo › revisión exhaustiva

7 Citas (Scopus)

Resumen

Objectives: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. Methods: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. Results: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed “Impact on Life” goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. Conclusions: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

Idioma original	English
Páginas (desde-hasta)	413-420
Número de páginas	8
Publicación	Value in Health
Volumen	24
N.º	3
DOI	https://doi.org/10.1016/j.jval.2020.10.023
Estado	Published - mar. 2021

Nota bibliográfica

Funding Information:
Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer’s Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work.

Funding Information:
Author Contributions: Concept and design: Goldstine, Knox, Inglese, Rockwood, Acquisition of data: Goldstine, Inglese, Rockwood, Analysis and interpretation of data: Knox, Beekman, Cobussen Boekhorst, Conti, Gray, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Drafting of the manuscript: Knox, Stanley, Howlett, Rockwood, Critical revision of the paper for important intellectual content: Goldstine, Knox, Beekman, Cobussen-Boekhorst, Conti, Gray, Inglese, England, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Statistical analysis: Stanley, Rockwood, Provision of study materials or patients: Goldstine, Inglese, Rockwood, Obtaining funding: England, Rockwood, Administrative, technical, or logistic support: England, Supervision: Rockwood, Other (menu development): Beekman, Cobussen-Boekhorst, Conti, Gray, Rodriguez, Vaughn, Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer's Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work. Funding/Support: This study was funded by Hollister Incorporated. Role of the Funder/Sponsor: Hollister Incorporated participated in the conceptualization of the study and recruitment of study subjects. DGI Clinical Inc independently designed and conducted the study; collected, managed, and analyzed the data; and drafted the manuscript. Acknowledgment: The authors would like to acknowledge Eva Wallace, RN, Julie Storrie, RGN, and Paula Muter, RGN, who participated in menu development.

Publisher Copyright:
© 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research

ASJC Scopus Subject Areas

Health Policy
Public Health, Environmental and Occupational Health

PubMed: MeSH publication types

Journal Article
Research Support, Non-U.S. Gov't

ODS de las Naciones Unidas

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10.1016/j.jval.2020.10.023

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Goldstine, J., Knox, K., Beekman, J., Cobussen-Boekhorst, H., Conti, A., Gray, M., Inglese, G., England, A., Rodriguez, G., Stanley, J., Vaughn, S., Howlett, S. E., & Rockwood, K. (2021). A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization. Value in Health, 24(3), 413-420. https://doi.org/10.1016/j.jval.2020.10.023

Goldstine, J, Knox, K, Beekman, J, Cobussen-Boekhorst, H, Conti, A, Gray, M, Inglese, G, England, A, Rodriguez, G, Stanley, J, Vaughn, S, Howlett, SE & Rockwood, K 2021, 'A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization', Value in Health, vol. 24, n.º 3, pp. 413-420. https://doi.org/10.1016/j.jval.2020.10.023

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title = "A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization",

abstract = "Objectives: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. Methods: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. Results: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed “Impact on Life” goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. Conclusions: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.",

author = "Jimena Goldstine and Kari Knox and Joke Beekman and Hanny Cobussen-Boekhorst and Alessio Conti and Mikel Gray and Gary Inglese and Amanda England and Gianna Rodriguez and Justin Stanley and Stephanie Vaughn and Howlett, {Susan E.} and Kenneth Rockwood",

note = "Funding Information: Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer{\textquoteright}s Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work. Funding Information: Author Contributions: Concept and design: Goldstine, Knox, Inglese, Rockwood, Acquisition of data: Goldstine, Inglese, Rockwood, Analysis and interpretation of data: Knox, Beekman, Cobussen Boekhorst, Conti, Gray, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Drafting of the manuscript: Knox, Stanley, Howlett, Rockwood, Critical revision of the paper for important intellectual content: Goldstine, Knox, Beekman, Cobussen-Boekhorst, Conti, Gray, Inglese, England, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Statistical analysis: Stanley, Rockwood, Provision of study materials or patients: Goldstine, Inglese, Rockwood, Obtaining funding: England, Rockwood, Administrative, technical, or logistic support: England, Supervision: Rockwood, Other (menu development): Beekman, Cobussen-Boekhorst, Conti, Gray, Rodriguez, Vaughn, Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer's Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work. Funding/Support: This study was funded by Hollister Incorporated. Role of the Funder/Sponsor: Hollister Incorporated participated in the conceptualization of the study and recruitment of study subjects. DGI Clinical Inc independently designed and conducted the study; collected, managed, and analyzed the data; and drafted the manuscript. Acknowledgment: The authors would like to acknowledge Eva Wallace, RN, Julie Storrie, RGN, and Paula Muter, RGN, who participated in menu development. Publisher Copyright: {\textcopyright} 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research",

year = "2021",

month = mar,

doi = "10.1016/j.jval.2020.10.023",

language = "English",

volume = "24",

pages = "413--420",

journal = "Value in Health",

issn = "1098-3015",

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number = "3",

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T1 - A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction

T2 - Path to Individualization

AU - Goldstine, Jimena

AU - Knox, Kari

AU - Beekman, Joke

AU - Cobussen-Boekhorst, Hanny

AU - Conti, Alessio

AU - Gray, Mikel

AU - Inglese, Gary

AU - England, Amanda

AU - Rodriguez, Gianna

AU - Stanley, Justin

AU - Vaughn, Stephanie

AU - Howlett, Susan E.

AU - Rockwood, Kenneth

N1 - Funding Information: Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer’s Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work. Funding Information: Author Contributions: Concept and design: Goldstine, Knox, Inglese, Rockwood, Acquisition of data: Goldstine, Inglese, Rockwood, Analysis and interpretation of data: Knox, Beekman, Cobussen Boekhorst, Conti, Gray, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Drafting of the manuscript: Knox, Stanley, Howlett, Rockwood, Critical revision of the paper for important intellectual content: Goldstine, Knox, Beekman, Cobussen-Boekhorst, Conti, Gray, Inglese, England, Rodriguez, Stanley, Vaughn, Howlett, Rockwood, Statistical analysis: Stanley, Rockwood, Provision of study materials or patients: Goldstine, Inglese, Rockwood, Obtaining funding: England, Rockwood, Administrative, technical, or logistic support: England, Supervision: Rockwood, Other (menu development): Beekman, Cobussen-Boekhorst, Conti, Gray, Rodriguez, Vaughn, Conflict of Interest Disclosures: Dr Goldstine and Mr Inglese are employed by Hollister Incorporated. Mss Knox and England, Mr Stanley, and Drs Howlett and Rockwood are employed by DGI Clinical Inc. Mr Beekman and Drs Cobussen-Boekhorst, Conti, Gray, Rodriguez, and Vaughn reported being expert advisors to Hollister Incorporated for concept elicitation and the review of goal menu items outside the submitted work. Dr Cobussen-Boekhorst reported that her hospital received fees from Cogentix Medical and from Workgroup government outside the submitted work. Dr Rockwood reported stock ownership in DGI Clinical Inc during the conduct of the study; receiving grants from the Alzheimer's Society of Canada outside the submitted work; serving as associate director of the Canadian Consortium on Neurodegeneration and Aging for the Canadian Institutes of Health Research, and a Kathryn Allen Weldon Professor of Alzheimer Research for Dalhousie University outside the submitted work; and receiving other funding from the Nova Scotia Health Research Foundation, the Capital Health Research Fund, and the Nova Scotia Health Authority Foundation outside the submitted work. Funding/Support: This study was funded by Hollister Incorporated. Role of the Funder/Sponsor: Hollister Incorporated participated in the conceptualization of the study and recruitment of study subjects. DGI Clinical Inc independently designed and conducted the study; collected, managed, and analyzed the data; and drafted the manuscript. Acknowledgment: The authors would like to acknowledge Eva Wallace, RN, Julie Storrie, RGN, and Paula Muter, RGN, who participated in menu development. Publisher Copyright: © 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research

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Y1 - 2021/3

N2 - Objectives: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. Methods: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. Results: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed “Impact on Life” goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. Conclusions: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

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A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization

Resumen

Nota bibliográfica

ASJC Scopus Subject Areas

PubMed: MeSH publication types

ODS de las Naciones Unidas

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