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1. Protocol for the Development and Initial Validation of the COG-IMPACT Tool: A Purpose-Built Unmet Needs Assessment for Cancer-Related Cognitive Impairment.

Author

Haywood, Darren, OConnor, Moira, Baughman, Frank, Chan, Alexandre, Chan, Raymond, Dauer, Evan, Dhillon, Haryana, Henneghan, Ashley, Lawrence, Blake, Lustberg, Maryam, Vardy, Janette, Rossell, Susan, and Hart, Nicolas

Subjects
cancer fog, cancer survivors, cancer-related cognitive impairment, challenges, health professionals, measure development, mixed methods, qualitative, quality of life, unmet needs
Abstract

(1) Background: A significant proportion of cancer survivors report experiencing a cognitive fog that affects their ability to think coherently and quickly, and reason with clarity. This has been referred to as cancer-related cognitive impairment (CRCI). CRCI has extensive impacts on the daily lives of people living with or beyond cancer, including occupational, social, and psychological functioning. Oncology health professionals report feeling under-resourced to effectively assess the needs of an individual with CRCI and then provide optimal care and referral. (2) Methods: The objective of this project is to develop and provide an initial validation of the first purpose-built unmet needs assessment for CRCI: the Unmet Needs Assessment of Cancer-Related Cognitive Impairment Impact (COG-IMPACT). We will use a multiple-stage, co-design, mixed-methods approach to develop and provide an initial validation of the COG-IMPACT. (3) Results: The primary anticipated result of this research is the production of the COG-IMPACT, the first purpose-built unmet needs assessment for CRCI. The assessment could be used by health professionals to understand the unmet needs and facilitate optimal care and referral for cancer survivors, by survivors to elucidate their supportive needs and advocate for their care, and by researchers to examine the correlates of unmet needs relating to CRCI, as well as how best to support people with CRCI.

Published
2024

4. Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study

Author

Marthick, Michael, Janssen, Anna, Cheema, Birinder S, Alison, Jennifer, Shaw, Tim, and Dhillon, Haryana

Subjects
Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282
Abstract

BackgroundDigital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. ObjectiveThis study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. MethodsParticipants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. ResultsA total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. ConclusionsParticipants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging. International Registered Report Identifier (IRRID)RR2-10.2196/9586

Published
2019
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13. I Don't Believe It, But I'd Better Do Something About It: Patient Experiences of Online Heart Age Risk Calculators

Author

Bonner, Carissa, Jansen, Jesse, Newell, Ben R, Irwig, Les, Glasziou, Paul, Doust, Jenny, Dhillon, Haryana, and McCaffery, Kirsten

Subjects
Computer applications to medicine. Medical informatics, R858-859.7, Public aspects of medicine, RA1-1270
Abstract

BackgroundHealth risk calculators are widely available on the Internet, including cardiovascular disease (CVD) risk calculators that estimate the probability of a heart attack, stroke, or death over a 5- or 10-year period. Some calculators convert this probability to “heart age”, where a heart age older than current age indicates modifiable risk factors. These calculators may impact patient decision making about CVD risk management with or without clinician involvement, but little is known about how patients use them. Previous studies have not investigated patient understanding of heart age compared to 5-year percentage risk, or the best way to present heart age. ObjectiveThis study aimed to investigate patient experiences and understanding of online heart age calculators that use different verbal, numerical, and graphical formats, based on 5- and 10-year Framingham risk equations used in clinical practice guidelines around the world. MethodsGeneral practitioners in New South Wales, Australia, recruited 26 patients with CVD/lifestyle risk factors who were not taking cholesterol or blood pressure-lowering medication in 2012. Participants were asked to “think aloud” while using two heart age calculators in random order, with semi-structured interviews before and after. Transcribed audio recordings were coded and a framework analysis method was used. ResultsRisk factor questions were often misinterpreted, reducing the accuracy of the calculators. Participants perceived older heart age as confronting and younger heart age as positive but unrealistic. Unexpected or contradictory results (eg, low percentage risk but older heart age) led participants to question the credibility of the calculators. Reasons to discredit the results included the absence of relevant lifestyle questions and impact of corporate sponsorship. However, the calculators prompted participants to consider lifestyle changes irrespective of whether they received younger, same, or older heart age results. ConclusionsOnline heart age calculators can be misunderstood and disregarded if they produce unexpected or contradictory results, but they may still motivate lifestyle changes. Future research should investigate both the benefits and harms of communicating risk in this way, and how to increase the reliability and credibility of online health risk calculators.

Published
2014
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15. Impact of Cognitive Rehabilitation on Cognitive and Functional Outcomes in Adult Cancer Survivors: A Systematic Review

Author

Nakamura, Zev M., Ali, Nadeen T., Crouch, Adele, Dhillon, Haryana, Federico, Angela, Gates, Priscilla, Grech, Lisa, Kesler, Shelli R., Ledbetter, Leila, Mantovani, Elisa, Mayo, Samantha, Ng, Ding Quan, Pembroke, Lorna, Pike, Kerryn E., Tamburin, Stefano, Tan, Chia Jie, Toh, Yi Long, Yang, Yesol, Von Ah, Diane, and Allen, Deborah H.

Published
2024
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16. Virtual multimodal hub for patients undergoing major gastrointestinal cancer surgery (PRIORITY-CONNECT 2 Pilot) - A pilot randomised type I hybrid effectiveness-implementation trial

Author

Steffens, Daniel, Koh, Cherry, Smith, Allan, Mohan, Helen, Carey, Sharon, Smith, Stephen, Poulton, Thomas, Patton, Vicki, White, Kate, Laranjo, Liliana, Dieng, Mbathio, Liu, Xiaoqiu, Denehy, Linda, Wilson, Kate, Allman-Farinelli, Margaret, Butow, Phyllis, Riedel, Bernhard, Morton, Rachael L., Hassett, Leanne, Li, Qiang, Delbaere, Kim, Hutchings, Owen, Martin, Olivia, Dhillon, Haryana, Shailer, Briana, Beardsworth, Gaynor, Salter, Marine, Cherry, Kathryn, Rubie, Freya, Reece, Lauren, Chan, Aveline, Shahab, Rihan, Dwyer, Olivia, Pring, Kaylene, Cunningham, Derek, Sheehan, Kym, Iori, Gino, Johnander, Rika, Cole, Ruby, Hirst, Nicholas, and Solomon, Michael

Published
2024
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17. International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care

Author

Signorelli, Christina, Høeg, Beverley Lim, Asuzu, Chioma, Centeno, Isabel, Estapé, Tania, Fisher, Peter, Lam, Wendy, Levkovich, Inbar, Manne, Sharon, Miles, Anne, Mullen, Louise, Nekhlyudov, Larissa, Sade, Cristina, Shaw, Joanne, Singleton, Anna, Travado, Luzia, Tsuchiya, Miyako, Lemmen, Jesse, Li, Jie, Jefford, Michael, Altman, Shiri, Anang, Reginald, Asuzu, Chioma, Barrera, Maru, Basen-Engquist, Karen, Bidstrup, Pernille, Bilodeau, Karine, Centeno, Isabel, Christodoulidou, Stephanie, Cirila, Andreja, Cohee, Andrea, Csaba Dégi, László, Dhillon, Haryana, Duijts, Saskia, Estapé, Tania, Fisher, Peter, Foster, Claire, Fournier, Valentyn, Gitonga, Isaiah, Goswami, Savita, Ha, Lauren, Hack, Tom, Heathcote, Lauren, Howard, Fuchsia, Hulbert-Williams, Nicholas, Jacobsen, Paul, Jefford, Michael, Kassianos, Angelos, Koczwara, Bogda, Lam, Wendy, Lasebikan, Victor, Lebel, Sophie, Lemmen, Jesse, Leslie, Monica, Levkovich, Inbar, Li, Jie, Lim Høeg, Beverley, Liu, Xiaohong, Luigjes, Yvonne, Manne, Sharon, Martinez Tyson, Dinorah, Mazariego, Carolyn, Miles, Anne, Mirov, Yurii, Mullen, Louise, Nandakumar, Devi, Larissa Nekhlyudo, Ray Nascimento, Odiyo, Philip, Ortolan, Paula, Reshetova, Maria, Ruble, Kathy, Sade, Cristina, Shaw, Joanne, Signorelli, Christina, Singleton, Anna, Smith, Ben, Smrdel, Škufca, Taylor, Carolyn, Travado, Luzia, Tsuchiya, Miyako, Turner, Jane, Veeraiah, Surendran, Wells, Elizabeth, Xu, Lei, and Zhang, Anao

Published
2024
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18. Clinical Trial Protocol for PRIMARY2: A Multicentre, Phase 3, Randomised Controlled Trial Investigating the Additive Diagnostic Value of [68Ga]Ga-PSMA-11 Positron Emission Tomography/Computed Tomography in Men with Negative or Equivocal Multiparametric Magnetic Resonance Imaging for the Diagnosis of Clinically Significant Prostate Cancer

Author

Buteau, James P., Moon, Daniel, Fahey, Michael T., Roberts, Matthew J., Thompson, James, Murphy, Declan G., Papa, Nathan, Mitchell, Catherine, De Abreu Lourenco, Richard, Dhillon, Haryana M., Kasivisvanathan, Veeru, Francis, Roslyn J., Stricker, Phillip, Agrawal, Shihka, O'Brien, Jonathan, McVey, Aoife, Sharma, Gaurav, Levy, Sidney, Ayati, Narjess, Nguyen, Andrew, Lee, Su-Faye, Pattison, David A., Sivaratnam, Dinesh, Frydenberg, Mark, Du, Yang, Titus, Jehan, Lee, Sze-Ting, Ischia, Joseph, Jack, Greg, Hofman, Michael S., and Emmett, Louise

Published
2024
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19. Effect of core versus enhanced implementation strategies on adherence to a clinical pathway for managing anxiety and depression in cancer patients in routine care: a cluster randomised controlled trial

Author

Butow, Phyllis, Faris, Mona M., Shaw, Joanne, Kelly, Patrick, He, Sharon, Harris, Marnie, Cuddy, Jessica, Masya, Lindy, Geerligs, Liesbeth, Kelly, Brian, Girgis, Afaf, Rankin, Nicole, Beale, Philip, Hack, Thomas F., Kirsten, Laura, Dhillon, Haryana, Grimison, Peter, Viney, Rosalie, Clayton, Josephine M., Schlub, Timothy, and Shepherd, Heather L.

Published
2023
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38. A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress.

Author

Halkett, Georgia K B, McDougall, Emma, Berg, Melissa, Clarke, Jenny, Dhillon, Haryana M, Lobb, Elizabeth, Phillips, Jane L, Hudson, Peter, Faris, Mona M, Campbell, Rachel, Shaw, Joanne, Coyne, Elisabeth, Kelly, Brian, Ownsworth, Tamara, Legge, Dianne M, and Nowak, Anna K

Subjects
MEDICAL specialties & specialists, BRAIN tumors, PSYCHOLOGICAL distress, CAREGIVERS, LIFE insurance
Abstract

Background Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support. Objectives To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial. Methods Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively. Results Four highly distressed carers were identified (N  = 98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered. Conclusions Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management. [ABSTRACT FROM AUTHOR]

Published
2024
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39. Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.

Author

Faris, Mona M, Dhillon, Haryana M, Campbell, Rachel, Halkett, Georgia K B, Miller, Annie, Chan, Raymond J, Haydon, Helen M, Sansom-Daly, Ursula M, Koh, Eng-Siew, Ownsworth, Tamara, Nowak, Anna K, Kelly, Brian, Leonard, Robyn, Pike, Kerryn E, Legge, Dianne M, Pinkham, Mark B, Agar, Meera R, Group, BRAINS Program, and Shaw, Joanne

Subjects
GLIOMAS, MEDICAL care, BRAIN tumors
Abstract

Background We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. Methods We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. Results Overall, 13% (n = 5) were categorized as no need , 23% (n = 27) low need , and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. Conclusions Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery. [ABSTRACT FROM AUTHOR]

Published
2024
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46. Web-based cognitive rehabilitation intervention for cancer-related cognitive impairment following chemotherapy for aggressive lymphoma: protocol for a randomised pilot trial

Author

Gates, Priscilla, primary, Green, Heather J, additional, Gough, Karla, additional, Dhillon, Haryana, additional, Vardy, Janette L, additional, Dickinson, Michael, additional, Guarnera, Jade, additional, Krishnasamy, Meinir, additional, Livingston, Patricia M, additional, White, Victoria, additional, Ugalde, Anna, additional, and Caeyenberghs, Karen, additional

Published
2024
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47. Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study

Author

Schilstra, Clarissa E, primary, Ellis, Sarah J, additional, Cohen, Jennifer, additional, Gall, Alana, additional, Diaz, Abbey, additional, Clarke, Kristina, additional, Dumlao, Gadiel, additional, Chard, Jennifer, additional, Cumming, Therese M, additional, Davis, Esther, additional, Dhillon, Haryana, additional, Burns, Mary Anne, additional, Docking, Kimberley, additional, Koh, Eng-Siew, additional, O'Reilly, Josephine, additional, Sansom-Daly, Ursula M, additional, Shaw, Joanne, additional, Speers, Nicole, additional, Taylor, Natalie, additional, Warne, Anthea, additional, and Fardell, Joanna E, additional

Published
2024
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