An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure
<p><strong>Background</strong></p> Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practi...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Other Authors: | |
| Format: | Journal article |
| Language: | English |
| Published: |
Elsevier
2022
|
| _version_ | 1826308884858404864 |
|---|---|
| author | Haywood, KL Southern, C Tutton, E Swindell, P Ellard, D Pearson, NA Parsons, H Couper, K Dainty, KN Agarwal, S Perkins, GD |
| author2 | SURViVORS PROM Buddies Group |
| author_facet | SURViVORS PROM Buddies Group Haywood, KL Southern, C Tutton, E Swindell, P Ellard, D Pearson, NA Parsons, H Couper, K Dainty, KN Agarwal, S Perkins, GD |
| author_sort | Haywood, KL |
| collection | OXFORD |
| description | <p><strong>Background</strong></p>
Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM).
<p><strong>Methods</strong></p>
International guidelines have informed a two-stage, iterative, and interactive process.
<p>Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.</p>
<p>Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties.</p>
<p><strong>Discussion</strong></p>
An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.
<p><strong>Ethical approval:</strong> University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).</p> |
| first_indexed | 2024-03-07T07:25:55Z |
| format | Journal article |
| id | oxford-uuid:90a2a1b0-ae84-42e2-8e74-2fb9aa2470b4 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T07:25:55Z |
| publishDate | 2022 |
| publisher | Elsevier |
| record_format | dspace |
| spelling | oxford-uuid:90a2a1b0-ae84-42e2-8e74-2fb9aa2470b42022-11-17T16:12:24ZAn international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measureJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:90a2a1b0-ae84-42e2-8e74-2fb9aa2470b4EnglishSymplectic ElementsElsevier2022Haywood, KLSouthern, CTutton, ESwindell, PEllard, DPearson, NAParsons, HCouper, KDainty, KNAgarwal, SPerkins, GDSURViVORS PROM Buddies Group <p><strong>Background</strong></p> Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM). <p><strong>Methods</strong></p> International guidelines have informed a two-stage, iterative, and interactive process. <p>Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.</p> <p>Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties.</p> <p><strong>Discussion</strong></p> An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings. <p><strong>Ethical approval:</strong> University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).</p> |
| spellingShingle | Haywood, KL Southern, C Tutton, E Swindell, P Ellard, D Pearson, NA Parsons, H Couper, K Dainty, KN Agarwal, S Perkins, GD An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title | An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title_full | An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title_fullStr | An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title_full_unstemmed | An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title_short | An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): a protocol for developing the long-form measure |
| title_sort | international collaborative study to co produce a patient reported outcome measure of cardiac arrest survivorship and health related quality of life cashqol a protocol for developing the long form measure |
| work_keys_str_mv | AT haywoodkl aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT southernc aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT tuttone aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT swindellp aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT ellardd aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT pearsonna aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT parsonsh aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT couperk aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT daintykn aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT agarwals aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT perkinsgd aninternationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT haywoodkl internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT southernc internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT tuttone internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT swindellp internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT ellardd internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT pearsonna internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT parsonsh internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT couperk internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT daintykn internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT agarwals internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure AT perkinsgd internationalcollaborativestudytocoproduceapatientreportedoutcomemeasureofcardiacarrestsurvivorshipandhealthrelatedqualityoflifecashqolaprotocolfordevelopingthelongformmeasure |