Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study)

Georgina L. Jones, Katharina Vogt, Frances Darby, Neda Mahmoodi, Jane Hughes, Diana Greenfield, Jonathan Skull, Sheila Lane, Grete Brauten‐Smith, Daniel Yeomanson, Nadine Ellissa Baskind, Galina Velikova, John Snowden, Jacqui Gath, Tonia Campbell, Bob Phillips, Hilary L. Bekker

Research output: Contribution to journalMeeting Abstract

Abstract

Background/Purpose: We report our experiences of developing a fertility preservation (FP) patient decision aid as part of the Cancer, Fertility and Me study. The purpose of this decision aid was to better support teenage and adult women (aged 16 years +) and diagnosed with any cancer in the UK, to make FP choices.

Methods and analysis: A prospective mixed‐method study was adopted. The research involved developing the decision aid (stage 1), user (alpha) testing the decision aid to gather feedback on its content and format from patients, cancer and fertility healthcare professionals (HCPs) and other key stakeholders (stage 2), and finally, field (beta) testing the resource to evaluate its acceptability when integrated into cancer care pathways around cancer diagnosis (stage 3).

Results: In stage 1, evidence syntheses of women's decision‐making needs, the existing open access FP resources and current clinical guidelines were undertaken. In stage 2, seven patients, ten HCPs, and nine key stakeholders completed a questionnaire and an additional telephone interview. Stage 3 is currently underway. So far, 23 women have been recruited and completed questionnaires and in‐depth interviews. Recruitment has been extended to fertility services due to the challenges of recruiting in oncology services.

Conclusions: Differences in opinion on the preferred content and format of the decision aid between patients and HCPs made tool development more challenging than anticipated. Whilst more resources to support FP decision‐making are desired by cancer patients, substantial work is needed to ensure they are used and integrated into routine oncology practice.
Original languageEnglish
Article number374/2
Pages (from-to)45
Number of pages1
JournalPsycho-Oncology
Volume27
Issue numberS3
Early online date24 Oct 2018
DOIs
Publication statusPublished - Oct 2018
Externally publishedYes
Event20th World Congress of Psycho-Oncology - Hong Kong, Hong Kong
Duration: 29 Oct 20182 Nov 2018
Conference number: 20

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Fertility Preservation
Decision Support Techniques
Fertility
Neoplasms
Delivery of Health Care
Interviews
Prospective Studies
Guidelines
Research

Cite this

L. Jones, Georgina ; Vogt, Katharina ; Darby, Frances ; Mahmoodi, Neda ; Hughes, Jane ; Greenfield, Diana ; Skull, Jonathan ; Lane, Sheila ; Brauten‐Smith, Grete ; Yeomanson, Daniel ; Ellissa Baskind, Nadine ; Velikova, Galina ; Snowden, John ; Gath, Jacqui ; Campbell, Tonia ; Phillips, Bob ; L. Bekker, Hilary . / Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study). In: Psycho-Oncology. 2018 ; Vol. 27, No. S3. pp. 45.
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title = "Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study)",
abstract = "Background/Purpose: We report our experiences of developing a fertility preservation (FP) patient decision aid as part of the Cancer, Fertility and Me study. The purpose of this decision aid was to better support teenage and adult women (aged 16 years +) and diagnosed with any cancer in the UK, to make FP choices.Methods and analysis: A prospective mixed‐method study was adopted. The research involved developing the decision aid (stage 1), user (alpha) testing the decision aid to gather feedback on its content and format from patients, cancer and fertility healthcare professionals (HCPs) and other key stakeholders (stage 2), and finally, field (beta) testing the resource to evaluate its acceptability when integrated into cancer care pathways around cancer diagnosis (stage 3).Results: In stage 1, evidence syntheses of women's decision‐making needs, the existing open access FP resources and current clinical guidelines were undertaken. In stage 2, seven patients, ten HCPs, and nine key stakeholders completed a questionnaire and an additional telephone interview. Stage 3 is currently underway. So far, 23 women have been recruited and completed questionnaires and in‐depth interviews. Recruitment has been extended to fertility services due to the challenges of recruiting in oncology services.Conclusions: Differences in opinion on the preferred content and format of the decision aid between patients and HCPs made tool development more challenging than anticipated. Whilst more resources to support FP decision‐making are desired by cancer patients, substantial work is needed to ensure they are used and integrated into routine oncology practice.",
author = "{L. Jones}, Georgina and Katharina Vogt and Frances Darby and Neda Mahmoodi and Jane Hughes and Diana Greenfield and Jonathan Skull and Sheila Lane and Grete Brauten‐Smith and Daniel Yeomanson and {Ellissa Baskind}, Nadine and Galina Velikova and John Snowden and Jacqui Gath and Tonia Campbell and Bob Phillips and {L. Bekker}, Hilary",
year = "2018",
month = "10",
doi = "10.1002/pon.4877",
language = "English",
volume = "27",
pages = "45",
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L. Jones, G, Vogt, K, Darby, F, Mahmoodi, N, Hughes, J, Greenfield, D, Skull, J, Lane, S, Brauten‐Smith, G, Yeomanson, D, Ellissa Baskind, N, Velikova, G, Snowden, J, Gath, J, Campbell, T, Phillips, B & L. Bekker, H 2018, 'Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study)', Psycho-Oncology, vol. 27, no. S3, 374/2, pp. 45. https://doi.org/10.1002/pon.4877

Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study). / L. Jones, Georgina ; Vogt, Katharina; Darby, Frances ; Mahmoodi, Neda ; Hughes, Jane ; Greenfield, Diana ; Skull, Jonathan ; Lane, Sheila ; Brauten‐Smith, Grete ; Yeomanson, Daniel ; Ellissa Baskind, Nadine ; Velikova, Galina ; Snowden, John ; Gath, Jacqui ; Campbell, Tonia ; Phillips, Bob ; L. Bekker, Hilary .

In: Psycho-Oncology, Vol. 27, No. S3, 374/2, 10.2018, p. 45.

Research output: Contribution to journalMeeting Abstract

TY - JOUR

T1 - Experience of developing and evaluating a fertility preservation patient decision aid for teenage and adult women with cancer for use in oncology settings, UK (The Cancer, Fertility and Me study)

AU - L. Jones, Georgina

AU - Vogt, Katharina

AU - Darby, Frances

AU - Mahmoodi, Neda

AU - Hughes, Jane

AU - Greenfield, Diana

AU - Skull, Jonathan

AU - Lane, Sheila

AU - Brauten‐Smith, Grete

AU - Yeomanson, Daniel

AU - Ellissa Baskind, Nadine

AU - Velikova, Galina

AU - Snowden, John

AU - Gath, Jacqui

AU - Campbell, Tonia

AU - Phillips, Bob

AU - L. Bekker, Hilary

PY - 2018/10

Y1 - 2018/10

N2 - Background/Purpose: We report our experiences of developing a fertility preservation (FP) patient decision aid as part of the Cancer, Fertility and Me study. The purpose of this decision aid was to better support teenage and adult women (aged 16 years +) and diagnosed with any cancer in the UK, to make FP choices.Methods and analysis: A prospective mixed‐method study was adopted. The research involved developing the decision aid (stage 1), user (alpha) testing the decision aid to gather feedback on its content and format from patients, cancer and fertility healthcare professionals (HCPs) and other key stakeholders (stage 2), and finally, field (beta) testing the resource to evaluate its acceptability when integrated into cancer care pathways around cancer diagnosis (stage 3).Results: In stage 1, evidence syntheses of women's decision‐making needs, the existing open access FP resources and current clinical guidelines were undertaken. In stage 2, seven patients, ten HCPs, and nine key stakeholders completed a questionnaire and an additional telephone interview. Stage 3 is currently underway. So far, 23 women have been recruited and completed questionnaires and in‐depth interviews. Recruitment has been extended to fertility services due to the challenges of recruiting in oncology services.Conclusions: Differences in opinion on the preferred content and format of the decision aid between patients and HCPs made tool development more challenging than anticipated. Whilst more resources to support FP decision‐making are desired by cancer patients, substantial work is needed to ensure they are used and integrated into routine oncology practice.

AB - Background/Purpose: We report our experiences of developing a fertility preservation (FP) patient decision aid as part of the Cancer, Fertility and Me study. The purpose of this decision aid was to better support teenage and adult women (aged 16 years +) and diagnosed with any cancer in the UK, to make FP choices.Methods and analysis: A prospective mixed‐method study was adopted. The research involved developing the decision aid (stage 1), user (alpha) testing the decision aid to gather feedback on its content and format from patients, cancer and fertility healthcare professionals (HCPs) and other key stakeholders (stage 2), and finally, field (beta) testing the resource to evaluate its acceptability when integrated into cancer care pathways around cancer diagnosis (stage 3).Results: In stage 1, evidence syntheses of women's decision‐making needs, the existing open access FP resources and current clinical guidelines were undertaken. In stage 2, seven patients, ten HCPs, and nine key stakeholders completed a questionnaire and an additional telephone interview. Stage 3 is currently underway. So far, 23 women have been recruited and completed questionnaires and in‐depth interviews. Recruitment has been extended to fertility services due to the challenges of recruiting in oncology services.Conclusions: Differences in opinion on the preferred content and format of the decision aid between patients and HCPs made tool development more challenging than anticipated. Whilst more resources to support FP decision‐making are desired by cancer patients, substantial work is needed to ensure they are used and integrated into routine oncology practice.

U2 - 10.1002/pon.4877

DO - 10.1002/pon.4877

M3 - Meeting Abstract

VL - 27

SP - 45

JO - Psycho-Oncology

JF - Psycho-Oncology

SN - 1057-9249

IS - S3

M1 - 374/2

ER -