An Ideal Intervention for Cancer-Related Fatigue: Qualitative Findings from Patients, Community Partners, and Healthcare Providers
Abstract
:1. Introduction
2. Methods
2.1. Participants
2.2. Protocol
2.3. Measures
2.4. Analyses
Qualitative Analyses
3. Results
3.1. Participants
3.2. Themes
3.2.1. Theme 1: “It Takes a Village”
Provider, Timing, and Location of the Intervention
Desired Components of an Intervention
3.2.2. Theme 2: “This Will Not Be Easy”
Patient Barriers
3.3. Systems Barriers
4. Discussion
5. Limitations
6. Conclusions and Future Directions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Berger, A.M.; Mooney, K.; Alvarez-Perez, A.; Breitbart, W.S.; Carpenter, K.M.; Cella, D.; Cleeland, C.; Dotan, E.; Eisenberger, M.A.; Escalante, C.P.; et al. Cancer-related fatigue, version 2.2015. J. Natl. Compr. Cancer Netw. 2015, 13, 1012–1039. [Google Scholar] [CrossRef]
- Hall, A.; Campbell, H.S.; Sanson-Fisher, R.; Lynagh, M.; D’Este, C.; Burkhalter, R.; Carey, M. Unmet needs of Australian and Canadian haematological cancer survivors: A cross-sectional international comparative study. Psycho-oncology 2013, 22, 2032–2038. [Google Scholar] [CrossRef]
- Wang, X.S.; Zhao, F.; Fisch, M.J.; O’Mara, A.M.; Cella, D.; Mendoza, T.R.; Cleeland, C.S. Prevalence and characteristics of moderate to severe fatigue: A multicenter study in cancer patients and survivors. Cancer 2014, 120, 425–432. [Google Scholar] [CrossRef]
- Al Maqbali, M.; Al Sinani, M.; Al Naamani, Z.; Al Badi, K.; Tanash, M.I. Prevalence of fatigue in patients with cancer: A systematic review and meta-analysis. J. Pain Symptom Manag. 2021, 61, 167–189.e14. [Google Scholar] [CrossRef]
- Jones, J.M.; Olson, K.; Catton, P.; Catton, C.N.; Fleshner, N.E.; Krzyzanowska, M.K.; McCready, D.R.; Wong, R.K.S.; Jiang, H.; Howell, D. Cancer-related fatigue and associated disability in posttreatment cancer survivors. J. Cancer Surviv. 2016, 10, 51–61. [Google Scholar] [CrossRef]
- Jones, J.M.; Howell, D.; Longo, C.; Olson, K.; Bedard, P.; Amir, E.; Zheng, S.; Chow, B.; Avery, L. The association of cancer-related fatigue on the social, vocational and healthcare-related dimensions of cancer survivorship. J. Cancer Surviv. 2023. [Google Scholar] [CrossRef]
- Howell, D.; Hack, T.F.; Oliver, T.K.; Chulak, T.; Mayo, S.; Aubin, M.; Chasen, M.; Earle, C.C.; Friedman, A.J.; Green, E.; et al. A Pan Canadian Practice Guideline for Screening, Assessment, and Management of Cancer-Related Fatigue in Adults; Canadian Partnership Against Cancer (Cancer Journey Advisory Group) and the Canadian Association of Psychosocial Oncology: Toronto, ON, Canada, 2015. [Google Scholar] [CrossRef]
- Fabi, A.; Bhargava, R.; Fatigoni, S.; Guglielmo, M.; Horneber, M.; Roila, F.; Weis, J.; Jordan, K.; Ripamonti, C.I.; ESMO Guidelines Committee. Cancer-related fatigue: ESMO Clinical Practice Guidelines for diagnosis and treatment. Ann. Oncol. 2020, 31, 713–723. [Google Scholar] [CrossRef]
- Pearson, E.J.; Morris, M.E.; McKinstry, C.E. Cancer-related fatigue: A survey of health practitioner knowledge and practice. Support. Care Cancer 2015, 23, 3521–3529. [Google Scholar] [CrossRef]
- Jones, G.; Gollish, M.; Trudel, G.; Rutkowski, N.; Brunet, J.; Lebel, S. A perfect storm and patient-provider breakdown in communication: Two mechanisms underlying practice gaps in cancer-related fatigue guidelines implementation. Support. Care Cancer 2021, 29, 1873–1881. [Google Scholar] [CrossRef]
- James, S.; Wright, P.; Scarlett, C.; Young, T.; Jamal, H.; Verma, R. Cancer-related fatigue: Results from patient experience surveys undertaken in a UK regional cancer centre. Support. Care Cancer 2015, 23, 2089–2095. [Google Scholar] [CrossRef]
- Pearson, E.J.M.; Morris, M.E.; McKinstry, C.E. Cancer related fatigue: Implementing guidelines for optimal management. BMC Health Serv. Res. 2017, 17, 496. [Google Scholar] [CrossRef] [PubMed]
- Agbejule, O.A.; Hart, N.H.; Ekberg, S.; Chan, R.J. Development of a self-management support practice framework for addressing cancer-related fatigue: A modified Delphi study. J. Cancer Surviv. 2023, 18, 972–982. [Google Scholar] [CrossRef] [PubMed]
- Hilarius, D.L.; Kloeg, P.H.; van der Wall, E.; Komen, M.; Gundy, C.M.; Aaronson, N.K. Cancer-related fatigue: Clinical practice versus practice guidelines. Support. Care Cancer 2011, 19, 531–538. [Google Scholar] [CrossRef] [PubMed]
- Schmidt, M.E.; Bergbold, S.; Hermann, S.; Steindorf, K. Knowledge, perceptions, and management of cancer-related fatigue: The patients’ perspective. Support. Care Cancer 2021, 29, 2063–2071. [Google Scholar] [CrossRef] [PubMed]
- Berger, A.M.; Mitchell, S.A.; Jacobsen, P.B.; Pirl, W.F. Screening, evaluation, and management of cancer-related fatigue: Ready for implementation to practice? CA Cancer J. Clin. 2015, 65, 190–211. [Google Scholar] [CrossRef] [PubMed]
- Graham, I.D.; Logan, J.; Harrison, M.B.; Straus, S.E.; Tetroe, J.; Caswell, W.; Robinson, N. Lost in knowledge translation: Time for a map? J. Contin. Educ. Health Prof. 2006, 26, 13–24. [Google Scholar] [CrossRef] [PubMed]
- Straus, S.; Tetroe, J.; Graham, I.D. Knowledge Translation in Health Care: Moving from Evidence to Practice; John Wiley & Sons: Hoboken, NJ, USA, 2013. [Google Scholar]
- Creswell, J.W.; Poth, C.N. Qualitative Inquiry and Research Design: Choosing among Five Approaches; Sage Publications: Thousand Oaks, CA, USA, 2016. [Google Scholar]
- NVivo Qualitative Data Analysis Software; QSR International Pty Ltd.: Burlington, MA, USA, 2018.
- O’Brien, B.C.; Harris, I.B.; Beckman, T.J.; Reed, D.A.; Cook, D.A. Standards for reporting qualitative research: A synthesis of recommendations. Acad. Med. 2014, 89, 1245–1251. [Google Scholar] [CrossRef] [PubMed]
- Olmos-Vega, F.M.; Stalmeijer, R.E.; Varpio, L.; Kahlke, R. A practical guide to reflexivity in qualitative research: AMEE Guide No. 149. Med. Teach. 2023, 45, 241–251. [Google Scholar] [CrossRef] [PubMed]
- Frechette, J.; Bitzas, V.; Aubry, M.; Kilpatrick, K.; Lavoie-Tremblay, M. Capturing lived experience: Methodological considerations for interpretive phenomenological inquiry. Int. J. Qual. Methods 2020, 19, 1609406920907254. [Google Scholar] [CrossRef]
- Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006, 3, 77–101. [Google Scholar] [CrossRef]
- Carter, N.; Bryant-Lukosius, D.; DiCenso, A.; Blythe, J.; Neville, A.J. The use of triangulation in qualitative research. Oncol. Nurs. Forum 2014, 41, 545–547. [Google Scholar] [CrossRef] [PubMed]
- Pearson, E.J.; Denehy, L.; Edbrooke, L. Identifying strategies for implementing a clinical guideline for cancer-related fatigue: A qualitative study. BMC Health Serv. Res. 2023, 23, 395. [Google Scholar] [CrossRef] [PubMed]
- Spring, B.; Stump, T.; Penedo, F.; Pfammatter, A.F.; Robinson, J.K. Toward a health-promoting system for cancer survivors: Patient and provider multiple behavior change. Health Psychol. 2019, 38, 840–850. [Google Scholar] [CrossRef]
- Beenhakker, L.; Witteveen, A.; Wijlens, K.A.E.; Siemerink, E.J.M.; van der Lee, M.L.; Bode, C.; Siesling, S.; Vollenbroek-Hutten, M.M.R. Patient preference attributes in eHealth interventions for cancer-related fatigue: A scoping review. Eur. J. Cancer Care 2022, 31, e13754. [Google Scholar] [CrossRef] [PubMed]
- McDonough, M.H.; Beselt, L.J.; Kronlund, L.J.; Albinati, N.K.; Daun, J.T.; Trudeau, M.S.; Wong, J.B.; Culos-Reed, S.N.; Bridel, W. Social support and physical activity for cancer survivors: A qualitative review and meta-study. J. Cancer Surviv. 2021, 15, 713–728. [Google Scholar] [CrossRef] [PubMed]
- Harrington, S.E.; Fisher, M.I.; Lee, J.Q.; Cohn, J.; Malone, D. Knowledge regarding cancer-related fatigue: A survey of physical therapists and individuals diagnosed with cancer. Physiother. Theory Pr. 2023, 39, 1964–1973. [Google Scholar] [CrossRef] [PubMed]
- Cancer Care Ontario. How to Manage Your Fatigue—Version 2. 2016. Available online: https://www.cancercareontario.ca/en/system/files_force/symptoms/ManageFatigue.pdf (accessed on 17 July 2024).
- Alberta Health Services. How to Manage Cancer-Related Fatigue. 2023. Available online: https://www.albertahealthservices.ca/assets/info/cca/if-cca-managing-cancer-related-fatigue.pdf (accessed on 17 July 2024).
- Eastern Health. Managing Cancer Related Fatigue for People Affected by Cancer. 2018. Available online: https://cancercare.easternhealth.ca/wp-content/uploads/sites/2/2018/01/BR_Managing-Cancer-Related-Fatigue.pdf (accessed on 17 July 2024).
- Cancer Council Victoria. Understanding Fatigue and Cancer. 2023. Available online: https://www.cancervic.org.au/downloads/Fatigue_and_cancer_easy_read_2022.pdf (accessed on 17 July 2024).
- American Cancer Society. Fatigue and Weakness. 2020. Available online: https://www.cancer.org/cancer/managing-cancer/side-effects/fatigue/what-is-cancer-related-fatigue.html#:~:text=The%20fatigue%20felt%20by%20people,while%20but%20then%20comes%20back (accessed on 17 July 2024).
- National Cancer Institute. Fatigue (PDQ)-Patient Version. 2021. Available online: https://www.cancer.gov/about-cancer/treatment/side-effects/fatigue/fatigue-hp-pdq#_1 (accessed on 17 July 2024).
- Corbett, T.K.; Groarke, A.; Devane, D.; Carr, E.; Walsh, J.C.; McGuire, B.E. The effectiveness of psychological interventions for fatigue in cancer survivors: Systematic review of randomised controlled trials. Syst. Rev. 2019, 8, 324. [Google Scholar] [CrossRef] [PubMed]
- Haussmann, A.; Schmidt, M.E.; Illmann, M.L.; Schröter, M.; Hielscher, T.; Cramer, H.; Maatouk, I.; Horneber, M.; Steindorf, K. Meta-analysis of randomized controlled trials on yoga, psychosocial, and mindfulness-based interventions for cancer-related fatigue: What intervention characteristics are related to higher efficacy? Cancers 2022, 14, 2016. [Google Scholar] [CrossRef]
- Chan, R.J.; Milch, V.E.; Crawford-Williams, F.; Agbejule, O.A.; Joseph, R.; Johal, J.; Dick, N.; Wallen, M.P.; Ratcliffe, J.; Agarwal, A.; et al. Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature. CA Cancer J. Clin. 2023, 73, 565–589. [Google Scholar] [CrossRef]
Patients | ||
---|---|---|
Mean (M) | SD | |
Age | 55.56 | 10.30 |
Time since diagnosis (years) | 5.31 | 2.55 |
Time since treatment completion (years) | 3.13 | 1.92 |
N (%) | ||
Gender | ||
Man | 7 (43.8%) | |
Women | 9 (56.3%) | |
Language | ||
English | 6 (37.5%) | |
French | 10 (62.5%) | |
Employment | ||
Full-time | 3 (18.8%) | |
Part-time | 3 (18.8%) | |
No | 10 (62.5%) | |
Born in Canada | ||
Yes | 16 (100%) | |
Ethnicity | ||
Caucasian/White | 16 (100%) | |
Diagnosis | ||
Prostate | 2 (12.5%) | |
Breast | 8 (50%) | |
Colorectal | 1 (6.3%) | |
Stomach | 1 (6.3%) | |
Multiple | 3 (18.8%) | |
Colon | 1 (6.3%) | |
Chemotherapy | ||
Yes | 8 (50%) | |
Radiation | ||
Yes | 10 (62.5%) | |
Surgery | ||
Yes | 10 (62.5%) | |
Income (CAD $) | ||
<40,000 | 4 (25%) | |
40,000–59,999 | 2 (12.5%) | |
60,00–79,999 | 1 (6.3%) | |
80,000–99,999 | 1 (6.3%) | |
100,000–150,000 | 6 (37.5%) | |
>150,000 | 1 (6.3%) | |
Do not know | 1 (6.3%) | |
Healthcare Providers | ||
M | SD | |
Age | 42.06 | 9.75 |
Work experience (years) | 11.05 | 8.21 |
N (%) | ||
Gender | ||
Man | 5 (15.6%) | |
Women | 27 (84.4%) | |
Title | ||
Radiation technician | 10 (31.3%) | |
Registered nurse | 10 (31.3%) | |
Social worker | 4 (12.5%) | |
Psychologist | 2 (6.3%) | |
Radiation oncologist | 2 (6.3%) | |
Dietician | 1 (3.1%) | |
Surgeon | 1 (3.1%) | |
Palliative care physician | 1 (3.1%) | |
Physiotherapist | 1 (3.1%) | |
Community Support Providers | ||
M | SD | |
Age | 43.86 | 11.20 |
Work experience (years) | 3.93 | 3.13 |
N (%) | ||
Gender | ||
Man | 2 (14.3%) | |
Women | 12 (85.7%) | |
Title | ||
Cancer coach | 7 (50%) | |
Hypnotherapist | 1 (7.1%) | |
Natural Chinese medicine | 1 (7.1%) | |
Registered massage therapist | 1 (7.1%) | |
Naturopathic doctor | 1 (7.1%) | |
Yoga therapist | 1 (7.1%) | |
Manager | 1 (7.1%) | |
Research fellow | 1 (7.1%) |
Theme | Subtheme | Quote |
---|---|---|
Provider, Timing, and Location of the Intervention | Anywhere | “It’s not one or the other [referring to community or hospital] …I think it could be in any location, but I think it’s that education piece…”—CSP “Accessible, for everybody.”—Patient |
Anyone and everyone, early and frequently | “I think if it was something that was part of their regular medical practice.”—CSP “I think the doctors and everybody that we need to see in the medical field. They need to be more aware of how fatigue affects us. I think they take it too lightly… it’s a ball floating and no one really grabs it.”—Patient | |
Desired Components of an Intervention | Peer support | “Maybe there’s an opportunity to have like a peer-to-peer advocacy group, [for] people who have lived with fatigue, and are living with it…”—Patient “If I had talked to other people dealing with the fatigue maybe I wouldn’t be so anxious and stressed and feeling like what’s happening to me…”—Patient |
Education on CrF | “I think that intervention or education as we’ve brought up is a huge piece of reassurance around what they’re coping with, and then to have the intervention—it should be holistic, it should talk about all the different things they can do, you know exercise, nutrition. How stress, how brain fog, how all these things impact their energy levels and what they can do about that.”—CSP | |
Physical activity | “If we could offer like an exercise class, that’s very basic, you could get a bunch of people and do it together.”—HCP | |
Mind–body | “The neat thing about mindfulness is that I think it’s a strategy that could be multi-modal. Like it could cover other aspects of difficulty with cancer too. But I think in terms of fatigue it is a useful intervention.”–CSP | |
Interdisciplinary care | “From my point of view, I just want to mention too that having a little bit of a better interdisciplinary team.”—HCP | |
Coordination of care | “A resource person, capable of, as I said earlier, sensitivity, being able to situate, being able to listen...”—Patient | |
Patient Barriers | Accessibility | “I find that there’s a lot of resources but there’s no follow through to get to them…especially a patient coming from a rural setting.”—HCP |
Online literacy | “A lot of them are older. So webinars might be a challenge for them.”—CSP “…those of us that are older and our patients are even older, we can’t just google the problem and solve it or go to a YouTube video.”—HCP | |
Information overload | “I personally try to tailor my techniques and everything to their education level like use simpler words, shorter sentences, etc. But sometimes it’s just too much for them, and then you give them a piece of paper and then it’s just too much and overwhelming.”—HCP | |
Patient variability | “Because we can recommend everything until we’re blue in the face but if the patient doesn’t want to do it... or if they’re not interested or if it’s not what they like…”—HCP “There’ll be people who are perhaps shy and don’t want to work in a group and will individually go online.”—CSP | |
Systems Barriers | Cost | “I understand it from a financial perspective, we just can’t keep everything here at the hospital and we tell the patient what they can do. And we hope that they do it. But in some cases, they won’t unless they’re being guided to do it.”—HCP “I just worry that in a hospital system an [intervention for CrF] will be seen as something that is non-essential and will get moved out very quickly.”—HCP “There’s what 300 cancer charities, we’re all fighting over donor dollars…”—CSP |
Lack of knowledge | “Fatigue was such a profound symptom for patients later on. So, I think health care provider education or lack of is a barrier.”—HCP | |
System inefficiencies | “We have to refer patients for many things, and I know sometimes people say that process isn’t complicated. But when there are 10 or 20 things to refer for, the simpler it is the more likely we are to think about it and use it.”—HCP “We work really hard to partner but there is a challenge in that…we know oncologists say to their patients, they’re not allowed to refer directly to any specific organization.”—CSP | |
Time constraints | “Well, not just that I think it’s more time to figure things out. It’s time with a person. You know, we don’t have time…”—HCP |
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Share and Cite
Rutkowski, N.A.; Jones, G.; Brunet, J.; Lebel, S. An Ideal Intervention for Cancer-Related Fatigue: Qualitative Findings from Patients, Community Partners, and Healthcare Providers. Curr. Oncol. 2024, 31, 4357-4368. https://doi.org/10.3390/curroncol31080325
Rutkowski NA, Jones G, Brunet J, Lebel S. An Ideal Intervention for Cancer-Related Fatigue: Qualitative Findings from Patients, Community Partners, and Healthcare Providers. Current Oncology. 2024; 31(8):4357-4368. https://doi.org/10.3390/curroncol31080325
Chicago/Turabian StyleRutkowski, Nicole Anna, Georden Jones, Jennifer Brunet, and Sophie Lebel. 2024. "An Ideal Intervention for Cancer-Related Fatigue: Qualitative Findings from Patients, Community Partners, and Healthcare Providers" Current Oncology 31, no. 8: 4357-4368. https://doi.org/10.3390/curroncol31080325