Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis

Schaverien, Mark V.; Gibbons, Christopher

doi:10.1245/s10434-020-09348-y

Cited by 5 publications

(2 citation statements)

References 10 publications

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“…Patient-reported outcome measures (PROMs) are instruments designed to capture the range of HRQL concepts that can be best known by asking patients without any interpretation by a clinician or anyone else. Recent systematic reviews [ 5 , 6 ] have identified several PROMs explicitly developed for upper extremity lymphedema, including the Lymphedema Quality of Life Questionnaire (LYMQOL) [ 7 ], the Upper Limb Lymphedema 27 Questionnaire (ULL-27) [ 8 ], the Lymphedema Functioning, Disability and Health Questionnaire (Lymph-ICF) [ 9 , 10 ], and the Lymphedema Symptom Intensity and Distress Survey – Arm (LSIDS-A) [ 11 ]. A common limitation that underpins most of these PROMs is that they were developed with minimal patient input and did not follow established guidelines [ 12 , 13 ].…”

Section: Introductionmentioning

confidence: 99%

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Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module

Kaur,

Cornacchi,

Tsangaris

et al. 2024

J Patient Rep Outcomes

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Background Breast cancer-related lymphedema (BRCL) is one of the most common causes of upper extremity (UE) lymphedema in developed nations and substantially impacts health-related quality of life. To advance our understanding of the epidemiology and treatment of BRCL, rigorously developed and validated patient-reported outcome measures (PROMs) are needed. This study aimed to demonstrate the iterative content validity of a modular UE lymphedema-specific PROM called the LYMPH-Q UE module. Methods A multi-step iterative qualitative approach was used. Semi-structured interview data from in-depth qualitative interviews with adult women (18 years and older) with BCRL were used to develop the first set of the LYMPH-Q UE scales. The content validity of these scales was demonstrated with patient and clinician feedback. Over the course of cognitive debriefing interviews, additional concepts of lymphedema worry and impact on work were identified as missing from the LYMPH-Q UE module. Subsequently, two new qualitative studies (a focus group and in-depth concept elicitation interviews with patients) were conducted, and two new scales were developed to measure lymphedema worry and impact on work life and their content validity was demonstrated. Results Qualitative data from in-depth and cognitive interviews with 15 (age 40–74 years) and 16 (age 38–74 years) women with BRCL, respectively, and feedback from 12 clinical experts, were used to develop and demonstrate the content validity of six LYMPH-Q UE scales measuring symptoms, function, appearance, psychological, information, and arm sleeve. Additionally, data from in-depth interviews with 12 (age 35–72 years) women with UE lymphedema and four focus groups (n = 16 women; age 35–74 years) was used to develop and assess the content validity of two new LYMPH-Q UE scales measuring lymphedema worry and impact on work life. The content validity of the previously established six scales was also demonstrated in these subsequent qualitative studies. Conclusion The LYMPH-Q UE is a modular PROM developed using international guidelines for PROM development and can be used in clinical practice, research, and quality improvement to enhance patient-centered shared decision-making. This study’s innovative and iterative approach to content validation demonstrates that the LYMPH-Q UE is a comprehensive measure that includes important concepts relevant to patients with UE lymphedema.

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Section: Introductionmentioning

confidence: 99%

“…A common limitation that underpins most of these PROMs is that they were developed with minimal patient input and did not follow established guidelines [ 12 , 13 ]. Further, they do not capture the full range of HRQL issues that matter to women with BCRL [ 5 , 6 ].…”

Section: Introductionmentioning

confidence: 99%

Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module

Kaur,

Cornacchi,

Tsangaris

et al. 2024

J Patient Rep Outcomes

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Dutch translation and cultural adaptation of the LYMPH-Q, a new patient-reported outcome measure for breast cancer-related lymphedema

et al. 2022

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Background The LYMPH-Q Upper Extremity module is a new patient-reported outcome measure (PROM) developed to assess patient outcomes of breast cancer-related arm lymphedema (BCRL). Content for the LYMPH-Q Upper Extremity Module was developed from the extensive input of patients and experts in the field of breast surgery and breast cancer-related lymphedema. Rasch Measurement Theory analysis was used to assess psychometric properties. The aim of this study was to perform a Dutch translation and cultural adaptation of the LYMPH-Q Upper Extremity Module. Methods The translation process was performed in accordance with the guidelines of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR).The process included two forward translations, two back translations, and cognitive debriefing interviews with patients with BCRL. Results Comparison of the two forward translations showed that the translations for most items (n = 60; 88.2%) were conceptually consistent between the two translators. Translations of the remaining items were reviewed and discussed until consensus was reached. Three items in the back translation had a different meaning when compared to the original English version and required re-translation. The resultant Dutch version of the LYMPH-Q was tested in a series of cognitive debriefing interviews with seven patients and showed good content validity. Conclusions The translation and cultural adaptation process resulted in a conceptually equivalent Dutch version of the LYMPH-Q Upper Extremity Module. This new PROM can now be used in clinical practice and research settings to evaluate outcomes in patients with BCRL. Level of evidence: Not gradable

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Ensuring patient centeredness in upper extremity lymphedema research: Identifying patient-prioritized agenda and preferences

Kaur¹,

Cornacchi²,

Klassen³

et al. 2023

Journal of Plastic, Reconstructive & Aesthetic Surgery

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Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis

Cited by 5 publications

References 10 publications

Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module

Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module

Dutch translation and cultural adaptation of the LYMPH-Q, a new patient-reported outcome measure for breast cancer-related lymphedema

Ensuring patient centeredness in upper extremity lymphedema research: Identifying patient-prioritized agenda and preferences

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