Top

Supportive Care in Cancer

Published in:

01-12-2023 | Research

Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach

Authors: Casey A. Walsh, Jennifer Good, Anas Ismaiel, Sarah Yarborough, Megan J. Shen

Published in: Supportive Care in Cancer | Issue 12/2023

Abstract

Purpose

Despite known benefits of planning for end-of-life, no digital tool exists to help patients with advanced cancer and their loved ones plan for death comprehensively. To address this unmet need, we developed a preliminary version of an innovative website to help patients with advanced cancer prepare for end-of-life tasks.

Methods

Guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral intervention development, patients with advanced cancer (n = 10) and their caregivers (n = 10) participated in a “Think Aloud” exercise and usability protocols to optimize the end-of-life planning website. The website was iteratively refined throughout the study in collaboration with the partnering company, Peacefully, Inc. Participants also completed the Acceptability E-Scale and System Usability Scale, with a priori benchmarks established for acceptability (scores of ≥ 24 on the Acceptability E-Scale) and usability (scores of ≥ 68 on the System Usability Scale).

Results

Patients (N = 10) and caregivers (N = 10) completed usability testing. Patients were majority female (80%), White (100%), and had a mean age of 58 years. Caregivers (N = 10) were majority male (60%), spouse/partner (90%), White (90%), and had a mean age of 59 years. For patients, a priori hypotheses were met for both acceptability (mean score of 24.7, SD = 4.35) and usability (mean score of 73.8, SD = 6.15). For caregivers, acceptability was just below the cutoff (mean score of 22.9, SD = 4.07) and usability exceeded the cutoff (mean score of 70.0, SD = 8.42). Overall, patients and caregivers reported high levels of satisfaction and found the website helpful, with specific suggestions for changes (e.g., add more information about information security, improve text legibility).

Conclusions

The findings from this study will inform modifications to optimize an innovative website to support patients with advanced cancer to prepare holistically for end-of-life tasks.

Network NCC (2023) NCCN guidelines. https://www.nccn.org/guidelines/category_1. Accessed 13 Oct 2023

Smith TJ et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30(8):880–887CrossRefPubMed

Services CfMaM (2020) Oncology Care Model (OCM) Second Annual Evaluation Report and next steps on Oncology Innovation. [cited 2023. https://innovation.cms.gov/data-and-reports/2020/cms-perspective-ocm. Accessed 13 Oct 2023

Schubart JR et al (2019) Advance care planning among patients with advanced cancer. J Oncol Pract 15(1):e65–e73CrossRefPubMed

Sudore RL et al (2018) Engaging diverse English- and Spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial. JAMA Intern Med 178(12):1616–1625CrossRefPubMedPubMedCentral

Heyland DK et al (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174(5):627–633CrossRefPubMedPubMedCentral

Steinhauser KE et al (2001) Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage 22(3):727–737CrossRefPubMed

Auriemma CL et al (2020) Completion of advance directives and documented care preferences during the coronavirus disease 2019 (COVID-19) pandemic. JAMA Netw Open 3(7):e2015762–e2015762CrossRefPubMedPubMedCentral

Payne HE et al (2015) Behavioral functionality of mobile apps in health interventions: a systematic review of the literature. JMIR mHealth uHealth 3(1):e20CrossRefPubMedPubMedCentral

10.

Czajkowski SM et al (2015) From ideas to efficacy: the ORBIT model for developing behavioral treatments for chronic diseases. Health Psychol 34(10):971–982CrossRefPubMedPubMedCentral

11.

Tariman JD et al (2011) Validation and testing of the Acceptability E-scale for web-based patient-reported outcomes in cancer care. Appl Nurs Res 24(1):53–58CrossRefPubMed

12.

Usability.gov (2023) System Usability Scale. https://www.usability.gov/how-to-and-tools/methods/system-usability-scale.html. Accessed 13 Oct 2023

13.

Lunenburg F (2011) Goal-setting theory of motivation. Int J Manag Bus Adm 15(1):1–6

14.

Pfeiffer E (1975) A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. J Am Geriatr Soc 23(10):433–441CrossRefPubMed

15.

Charlson ME et al (1987) A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 40(5):373–383CrossRefPubMed

16.

Sandelowski M (2010) What’s in a name? Qualitative description revisited. Research in Nursing & Health, 33(1):77–84

17.

Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340CrossRefPubMed

18.

Sullivan-Bolyai S, Bova C, Harper D (2005) Developing and refining interventions in persons with health disparities: the use of qualitative description. Nurs Outlook 53(3):127–133CrossRefPubMed

19.

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19(6):349–357CrossRefPubMed

20.

Bangor A, Kortum P, Miller J (2009) Determining what individual SUS scores mean: adding an adjective rating scale. J Usability Stud 4(3):114–123

21.

Brooke J (2013) SUS: a retrospective. J Usability Stud 8(2):29–40

22.

Sauro J (2011) Measuring usability with the System Usability Scale. [cited 2018 22 March]. https://measuringu.com/sus/. Accessed 13 Oct 2023

23.

Lee K et al (2023) Digital health interventions for adult patients with cancer evaluated in randomized controlled trials: scoping review. J Med Internet Res 25:e38333CrossRefPubMedPubMedCentral

24.

Resick JM et al (2020) Patient-centered and efficacious advance care planning in cancer: protocol and key design considerations for the PEACe-compare trial. Contemp Clin Trials 96:106071CrossRefPubMedPubMedCentral

25.

Sucala M et al (2021) Behavior science in the evolving world of digital health: considerations on anticipated opportunities and challenges. Transl Behav Med 11(2):495–503CrossRefPubMed

26.

Shen M (2022) How the science of grief can inform better bereavement leave in the U.S. https://medium.com/@meganjohnsonshen/how-the-science-of-grief-can-inform-better-bereavement-leave-in-the-u-s-3d7a1876ec83. Accessed 13 Oct 2023

27.

Cuadra D (2022) Why bereavement leave isn’t enough: what employees need after losing a loved one. https://www.benefitnews.com/news/employer-bereavement-policies-may-need-to-change. Accessed 13 Oct 2023

28.

Barry E (2022) How long should it take to grieve? Psychiatry has come up with an answer. https://www.nytimes.com/2022/03/18/health/prolonged-grief-disorder.html. Accessed 13 Oct 2023

29.

Falzarano F, Prigerson HG, Maciejewski PK (2021) The role of advance care planning in cancer patient and caregiver grief resolution: helpful or harmful? Cancers 13(8):1977. (Basel)

30.

Allsop MJ et al (2022) Building on sand: digital technologies for care coordination and advance care planning. BMJ Support Palliat Care 12(2):194–197CrossRefPubMed

31.

Birtwistle J et al (2022) Mapping and characterising electronic palliative care coordination systems and their intended impact: a national survey of end-of-life care commissioners. PLoS ONE 17(10):e0275991CrossRefPubMedPubMedCentral

32.

Temel JS, Petrillo LA, Greer JA (2022) Patient-centered palliative care for patients with advanced lung cancer. J Clin Oncol 40(6):626–634CrossRefPubMed

33.

Chaiviboontham S (2011) Recruitment and retention challenges in research of palliative care in patients with advanced cancer. Progress Palliat Care 19(4):185–188CrossRef

34.

McDermott E, Selman LE (2018) Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis. J Pain Symptom Manage 56(4):613–636CrossRefPubMed

Title: Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach
Authors: Casey A. Walsh
Jennifer Good
Anas Ismaiel
Sarah Yarborough
Megan J. Shen
Publication date: 01-12-2023
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 12/2023
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-023-08153-z

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 12/2023

Retrospective cohort study of CDK4/6-inhibitor-induced alopecia in breast cancer patients

Quality of life in patients with malignant spinal cord compression: a systematic review

Exploring potential anti-inflammatory effects of medicinal cannabis

Nomogram for predicting opioid-induced nausea and vomiting for cancer pain patients

Perceptions of healthcare professionals on the use of Mepitel Film for the prevention of acute radiation dermatitis in breast cancer

Cancer-related fatigue self-management: a MASCC-endorsed practice framework for healthcare professionals to optimally support cancer survivors

Keynote webinar | Spotlight on antibody–drug conjugates in cancer