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1. Impact of Individual, Organizational, and Technological Factors on the Implementation of an Online Portal to Support a Clinical Pathway Addressing Psycho-Oncology Care: Mixed Methods Study

Author

Masya, Lindy, Shepherd, Heather L, Butow, Phyllis, Geerligs, Liesbeth, Allison, Karen C, Dolan, Colette, Prest, Gabrielle, and Shaw, Joanne

Subjects
Medical technology, R855-855.5
Abstract

BackgroundClinical pathways (CPs) can improve patient outcomes but can be complex to implement. Technologies, such as clinical decision support (CDS) tools, can facilitate their use, but require end-user testing in clinical settings. ObjectiveThis study applied the Technology Acceptance Model to evaluate the individual, organizational, and technological contexts impacting application of a portal to facilitate a CP for anxiety and depression (the ADAPT Portal) in a metropolitan cancer service. The ADAPT Portal triggers patient screening on patient reported outcomes, alerts staff to high scores, recommends evidence-based management, and triggers review and rescreening at set intervals. MethodsQuantitative and qualitative data on portal activity, data accuracy, and health service staff perspectives were collected. Quantitative data were analyzed descriptively, and thematic analysis was applied to qualitative data. ResultsOverall, 15 (100% of those invited) health service staff agreed to be interviewed. During the pilot, 73 users (36 health service staff members and 37 patients) were registered on the ADAPT Portal. Of the 37 patients registered, 16 (43%) completed screening at least once, with seven screening positive and triaged appropriately. In total, 34 support requests were lodged, resulting in 17 portal enhancements (technical issues). Health service staff considered the ADAPT Portal easy to use and useful; however, some deemed it unnecessary or burdensome (individual issues), particularly in a busy cancer service (organizational issues). ConclusionsUser testing of a CDS to facilitate screening and assessment of anxiety and depression in cancer patients highlighted some technological issues in implementing the ADAPT CDS, resulting in 17 enhancements. Our results highlight the importance of obtaining health service staff feedback when piloting specialized CDS tools and addressing contextual factors when implementing them.

Published
2021
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2. Implementing Web-Based Therapy in Routine Mental Health Care: Systematic Review of Health Professionals’ Perspectives

Author

Davies, Fiona, Shepherd, Heather L, Beatty, Lisa, Clark, Brodie, Butow, Phyllis, and Shaw, Joanne

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

BackgroundWeb-based therapies hold great promise to increase accessibility and reduce costs of delivering mental health care; however, uptake in routine settings has been low. ObjectiveOur objective in this review was to summarize what is known about health care professionals’ perceptions of the barriers to and facilitators of the implementation of web-based psychological treatments in routine care of adults in health care settings. MethodsWe searched 5 major databases (MEDLINE, EMBASE, PsycINFO, CINAHL, and the Cochrane Library) for qualitative, quantitative, or mixed-methods studies exploring health professionals’ views on computer- or internet-based psychological treatment programs. We coded included articles for risk of bias and extracted data using a prepiloted extraction sheet. ResultsWe identified 29 eligible articles: 14 qualitative, 11 quantitative, and 4 mixed methods. We identified the following themes: patient factors, health professional factors, the therapeutic relationship, therapy factors, organizational and system factors, and models of care. Health professionals supported web-based therapies only for patients with relatively straightforward, low-risk diagnoses, strong motivation and engagement, high computer literacy and access, and low need for tailored content. They perceived flexibility with timing and location as advantages of web-based therapy, but preferred blended therapy to facilitate rapport and allow active monitoring and follow-up of patients. They emphasized the need for targeted training and organizational support to manage changed workflows. Health professionals were concerned about the confidentiality and security of client data for web-based programs, suggesting that clear and transparent protocols need to be in place to reassure health professionals before they will be willing to refer. ConclusionsWithout health professionals’ support, many people will not access web-based therapies. To increase uptake, it is important to ensure that health professionals receive education, familiarization, and training to support them in incorporating web-based therapies into their practice, and to design systems that support health professionals in this new way of working with patients and addressing their concerns. Trial RegistrationPROSPERO CRD42018100869; https://tinyurl.com/y5vaoqsk

Published
2020
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5. Mobile Health Intervention to Increase Oral Cancer Therapy Adherence in Patients With Chronic Myeloid Leukemia (The REMIND System): Clinical Feasibility and Acceptability Assessment

Author

Pereira-Salgado, Amanda, Westwood, Jennifer A, Russell, Lahiru, Ugalde, Anna, Ortlepp, Bronwen, Seymour, John F, Butow, Phyllis, Cavedon, Lawrence, Ong, Kevin, Aranda, Sanchia, Breen, Sibilah, Kirsa, Suzanne, Dunlevie, Andrew, and Schofield, Penelope

Subjects
Information technology, T58.5-58.64, Public aspects of medicine, RA1-1270
Abstract

BackgroundOptimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure. ObjectiveThe objective of this study was to develop and pilot-test the clinical feasibility and acceptability of a mobile health system (REMIND) to increase oral drug adherence and patient symptom self-management among people with CML (chronic phase). MethodsA multifaceted intervention was iteratively developed using the intervention development framework by Schofield and Chambers, consisting of defining the patient problem and iteratively refining the intervention. The clinical feasibility and acceptability were examined via patient and intervention nurse interviews, which were audiotaped, transcribed, and deductively content analyzed. ResultsThe intervention comprised 2 synergistically operating elements: (1) daily medication reminders and routine assessment of side effects with evidence-based self-care advice delivered in real time and (2) question prompt list (QPL) questions and routinely collected individual patient adherence and side effect profile data used to shape nurses’ consultations, which employed motivational interviewing to support adoption of self-management behaviors. A total of 4 consultations and daily alerts and advice were delivered over 10 weeks. In total, 58% (10/17) of patients and 2 nurses participated in the pilot study. Patients reported several benefits of the intervention: help in establishing medication routines, resolution of symptom uncertainty, increased awareness of self-care, and informed decision making. Nurses also endorsed the intervention: it assisted in establishing pill-taking routines and patients developing effective solutions to adherence challenges. ConclusionsThe REMIND system with nurse support was usable and acceptable to both patients and nurses. It has the potential to improve adherence and side-effect management and should be further evaluated.

Published
2017
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7. Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence

Author

Smith, Allan ‘Ben’, Bamgboje‐Ayodele, Adeola, Jegathees, Sharuja, Butow, Phyllis, Klein, Britt, Salter, Marj, Turner, Jane, Fardell, Joanna, Thewes, Belinda, Sharpe, Louise, Beatty, Lisa, Pearce, Alison, Beith, Jane, Costa, Daniel, Rincones, Orlando, Wu, Verena S., Garden, Frances L., Kiely, Belinda E., Lim, Karen, Morstyn, Lisa, Hanley, Brigid, Hodgkin, Rosemerry, Beattie, Annette, and Girgis, Afaf

Published
2024
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8. Association of the CHEK2 c.1100delC variant, radiotherapy, and systemic treatment with contralateral breast cancer risk and breast cancer‐specific survival

Author

Morra, Anna, Schreurs, Maartje AC, Andrulis, Irene L, Anton‐Culver, Hoda, Augustinsson, Annelie, Beckmann, Matthias W, Behrens, Sabine, Bojesen, Stig E, Bolla, Manjeet K, Brauch, Hiltrud, Broeks, Annegien, Buys, Saundra S, Camp, Nicola J, Castelao, Jose E, Cessna, Melissa H, Chang‐Claude, Jenny, Chung, Wendy K, Sahlberg, Kristine K, Børresen‐Dale, Anne‐Lise, Gram, Inger Torhild, Olsen, Karina Standahl, Engebråten, Olav, Naume, Bjørn, Geisler, Jürgen, OSBREAC, Alnæs, Grethe I Grenaker, Colonna, Sarah V, Couch, Fergus J, Cox, Angela, Cross, Simon S, Czene, Kamila, Daly, Mary B, Dennis, Joe, Devilee, Peter, Dörk, Thilo, Dunning, Alison M, Dwek, Miriam, Easton, Douglas F, Eccles, Diana M, Eriksson, Mikael, Evans, D Gareth, Fasching, Peter A, Fehm, Tanja N, Figueroa, Jonine D, Flyger, Henrik, Gabrielson, Marike, Gago‐Dominguez, Manuela, García‐Closas, Montserrat, García‐Sáenz, José A, Genkinger, Jeanine, Grassmann, Felix, Gündert, Melanie, Hahnen, Eric, Haiman, Christopher A, Hamann, Ute, Harrington, Patricia A, Hartikainen, Jaana M, Hoppe, Reiner, Hopper, John L, Houlston, Richard S, Howell, Anthony, Clarke, Christine, Marsh, Deborah, Scott, Rodney, Baxter, Robert, Yip, Desmond, Carpenter, Jane, Davis, Alison, Pathmanathan, Nirmala, Simpson, Peter, Graham, J Dinny, Sachchithananthan, Mythily, Amor, David, Andrews, Lesley, Antill, Yoland, Balleine, Rosemary, Beesley, Jonathan, Bennett, Ian, Bogwitz, Michael, Botes, Leon, Brennan, Meagan, Brown, Melissa, Buckley, Michael, Burke, Jo, Butow, Phyllis, Caldon, Liz, Campbell, Ian, Cao, Michelle, Chakrabarti, Anannya, Chauhan, Deepa, Chauhan, Manisha, Chenevix‐Trench, Georgia, Christian, Alice, Cohen, Paul, Colley, Alison, Crook, Ashley, Cui, James, Courtney, Eliza, Cummings, Margaret, and Dawson, Sarah‐Jane

Subjects
Biomedical and Clinical Sciences, Oncology and Carcinogenesis, Women's Health, Breast Cancer, Clinical Research, Prevention, Cancer, Female, Humans, Breast Neoplasms, Checkpoint Kinase 2, Genetic Predisposition to Disease, Germ-Line Mutation, Heterozygote, Proportional Hazards Models, CHEK2 c.1100delC germline genetic variant, contralateral breast cancer risk, radiotherapy, survival, systemic treatment, NBCS Collaborators, ABCTB Investigators, kConFab Investigators, Biochemistry and Cell Biology, Oncology and carcinogenesis
Abstract

BackgroundBreast cancer (BC) patients with a germline CHEK2 c.1100delC variant have an increased risk of contralateral BC (CBC) and worse BC-specific survival (BCSS) compared to non-carriers.AimTo assessed the associations of CHEK2 c.1100delC, radiotherapy, and systemic treatment with CBC risk and BCSS.MethodsAnalyses were based on 82,701 women diagnosed with a first primary invasive BC including 963 CHEK2 c.1100delC carriers; median follow-up was 9.1 years. Differential associations with treatment by CHEK2 c.1100delC status were tested by including interaction terms in a multivariable Cox regression model. A multi-state model was used for further insight into the relation between CHEK2 c.1100delC status, treatment, CBC risk and death.ResultsThere was no evidence for differential associations of therapy with CBC risk by CHEK2 c.1100delC status. The strongest association with reduced CBC risk was observed for the combination of chemotherapy and endocrine therapy [HR (95% CI): 0.66 (0.55-0.78)]. No association was observed with radiotherapy. Results from the multi-state model showed shorter BCSS for CHEK2 c.1100delC carriers versus non-carriers also after accounting for CBC occurrence [HR (95% CI): 1.30 (1.09-1.56)].ConclusionSystemic therapy was associated with reduced CBC risk irrespective of CHEK2 c.1100delC status. Moreover, CHEK2 c.1100delC carriers had shorter BCSS, which appears not to be fully explained by their CBC risk.

Published
2023

9. 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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11. An online intervention to improve oncology health professional self-efficacy in communicating with carers: Hybrid effectiveness-implementation evaluation of the eTRIO program

Author

Laidsaar-Powell, Rebekah, Giunta, Sarah, Butow, Phyllis, Turner, Sandra, Costa, Daniel, Saunders, Christobel, Koczwara, Bogda, Kay, Judy, Jefford, Michael, Schofield, Penelope, Boyle, Frances, Yates, Patsy, White, Kate, Sundaresan, Puma, Varadarajan, Suganthy, and Juraskova, Ilona

Published
2024
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17. 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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18. Long-term cost-effectiveness of a melanoma prevention program using genomic risk information compared with standard prevention advice in Australia

Author

Newson, Ainsley J., Morton, Rachael L., Kimlin, Michael, Keogh, Louise, Law, Matthew, Kirk, Judy, Dobbinson, Suzanne J., Kanetsky, Peter, Mann, Graham, Dawkins, Hugh, Savard, Jacqueline, Dunlop, Kate, Trevena, Lyndal, Jenkins, Mark, Allen, Martin, Butow, Phyllis, Wordsworth, Sarah, Lo, Serigne, Low, Cynthia, Smit, Amelia K., Espinoza, David, Cust, Anne E., Law, Chi Kin, Fernandez-Penas, Pablo, Nieweg, Omgo E., and Menzies, Alexander M.

Published
2023
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19. Cancer Risks Associated With TP53 Pathogenic Variants: Maximum Likelihood Analysis of Extended Pedigrees for Diagnosis of First Cancers Beyond the Li-Fraumeni Syndrome Spectrum

Author

Fortuno, Cristina, Feng, Bing-Jian, Carroll, Courtney, Innella, Giovanni, Kohlmann, Wendy, Lázaro, Conxi, Brunet, Joan, Feliubadaló, Lidia, Iglesias, Silvia, Menéndez, Mireia, Teulé, Alex, Ballinger, Mandy L., Thomas, David M., Campbell, Ainsley, Field, Mike, Harris, Marion, Kirk, Judy, Pachter, Nicholas, Poplawski, Nicola, Susman, Rachel, Tucker, Kathy, Wallis, Mathew, Williams, Rachel, Cops, Elisa, Goldgar, David, James, Paul A., Spurdle, Amanda B., Amor, David, Andrews, Lesley, Antill, Yoland, Balleine, Rosemary, Beesley, Jonathan, Bennett, Ian, Bogwitz, Michael, Bodek, Simon, Botes, Leon, Brennan, Meagan, Brown, Melissa, Buckley, Michael, Burke, Jo, Butow, Phyllis, Caldon, Liz, Campbell, Ian, Cao, Michelle, Chakrabarti, Anannya, Chauhan, Deepa, Chauhan, Manisha, Chenevix-Trench, Georgia, Christian, Alice, Cohen, Paul, Colley, Alison, Crook, Ashley, Cui, James, Courtney, Eliza, Cummings, Margaret, Dawson, Sarah-Jane, deFazio, Anna, Delatycki, Martin, Dickson, Rebecca, Dixon, Joanne, Edkins, Ted, Edwards, Stacey, Farshid, Gelareh, Fellows, Andrew, Fenton, Georgina, Field, Michael, Flanagan, James, Fong, Peter, Forrest, Laura, Fox, Stephen, French, Juliet, Friedlander, Michael, Gaff, Clara, Gattas, Mike, George, Peter, Greening, Sian, Harris, Marion, Hart, Stewart, Hayward, Nick, Hopper, John, Hoskins, Cass, Hunt, Clare, James, Paul, Jenkins, Mark, Kidd, Alexa, Kirk, Judy, Koehler, Jessica, Kollias, James, Lakhani, Sunil, Lawrence, Mitchell, Lee, Jason, Li, Shuai, Lindeman, Geoff, Lippey, Jocelyn, Lipton, Lara, Lobb, Liz, Loi, Sherene, Mann, Graham, Marsh, Deborah, McLachlan, Sue Anne, Meiser, Bettina, Milne, Roger, Nightingale, Sophie, OʼConnell, Shona, OʼSullivan, Sarah, Ortega, David Gallego, Pachter, Nick, Pang, Jia-Min, Pathak, Gargi, Patterson, Briony, Pearn, Amy, Phillips, Kelly, Pieper, Ellen, Ramus, Susan, Rickard, Edwina, Robinson, Bridget, Saleh, Mona, Skandarajah, Anita, Salisbury, Elizabeth, Saunders, Christobel, Saunus, Jodi, Savas, Peter, Scott, Rodney, Scott, Clare, Sexton, Adrienne, Shaw, Joanne, Shelling, Andrew, Srinivasa, Shweta, Simpson, Peter, Southey, Melissa, Spurdle, Amanda, Taylor, Jessica, Taylor, Renea, Thorne, Heather, Trainer, Alison, Tucker, Kathy, Visvader, Jane, Walker, Logan, Williams, Rachael, Winship, Ingrid, Young, Mary Ann, and Zaheed, Milita

Published
2024
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24. The impact of coding germline variants on contralateral breast cancer risk and survival

Author

Sahlberg, Kristine K., Børresen-Dale, Anne-Lise, Gram, Inger Torhild, Olsen, Karina Standahl, Engebråten, Olav, Naume, Bjørn, Geisler, Jürgen, OSBREAC, Grenaker Alnæs, Grethe I., Amor, David, Andrews, Lesley, Antill, Yoland, Balleine, Rosemary, Beesley, Jonathan, Bennett, Ian, Bogwitz, Michael, Botes, Leon, Brennan, Meagan, Brown, Melissa, Buckley, Michael, Burke, Jo, Butow, Phyllis, Caldon, Liz, Campbell, Ian, Cao, Michelle, Chakrabarti, Anannya, Chauhan, Deepa, Chauhan, Manisha, Chenevix-Trench, Georgia, Christian, Alice, Cohen, Paul, Colley, Alison, Crook, Ashley, Cui, James, Courtney, Eliza, Cummings, Margaret, Dawson, Sarah-Jane, DeFazio, Anna, Delatycki, Martin, Dickson, Rebecca, Dixon, Joanne, Edkins, Ted, Edwards, Stacey, Farshid, Gelareh, Fellows, Andrew, Fenton, Georgina, Field, Michael, Flanagan, James, Fong, Peter, Forrest, Laura, Fox, Stephen, French, Juliet, Friedlander, Michael, Gaff, Clara, Gattas, Mike, George, Peter, Greening, Sian, Harris, Marion, Hart, Stewart, Hayward, Nick, Hopper, John, Hoskins, Cass, Hunt, Clare, James, Paul, Jenkins, Mark, Kidd, Alexa, Kirk, Judy, Koehler, Jessica, Kollias, James, Lakhani, Sunil, Lawrence, Mitchell, Lee, Jason, Li, Shuai, Lindeman, Geoff, Lipton, Lara, Lobb, Liz, Loi, Sherene, Mann, Graham, Marsh, Deborah, McLachlan, Sue Anne, Meiser, Bettina, Milne, Roger, Nightingale, Sophie, O'Connell, Shona, O'Sullivan, Sarah, Ortega, David Gallego, Pachter, Nick, Pang, Jia-Min, Pathak, Gargi, Patterson, Briony, Pearn, Amy, Phillips, Kelly, Pieper, Ellen, Ramus, Susan, Rickard, Edwina, Robinson, Bridget, Saleh, Mona, Skandarajah, Anita, Salisbury, Elizabeth, Saunders, Christobel, Saunus, Jodi, Scott, Rodney, Scott, Clare, Sexton, Adrienne, Shelling, Andrew, Simpson, Peter, Southey, Melissa, Spurdle, Amanda, Taylor, Jessica, Taylor, Renea, Thorne, Heather, Trainer, Alison, Tucker, Kathy, Visvader, Jane, Walker, Logan, Williams, Rachael, Winship, Ingrid, Young, Mary Ann, Zaheed, Milita, Morra, Anna, Mavaddat, Nasim, Muranen, Taru A., Ahearn, Thomas U., Allen, Jamie, Andrulis, Irene L., Auvinen, Päivi, Becher, Heiko, Behrens, Sabine, Blomqvist, Carl, Bojesen, Stig E., Bolla, Manjeet K., Brauch, Hiltrud, Camp, Nicola J., Carvalho, Sara, Castelao, Jose E., Cessna, Melissa H., Chang-Claude, Jenny, Czene, Kamila, Decker, Brennan, Dennis, Joe, Dörk, Thilo, Dorling, Leila, Dunning, Alison M., Ekici, Arif B., Eriksson, Mikael, Evans, D. Gareth, Fasching, Peter A., Figueroa, Jonine D., Flyger, Henrik, Gago-Dominguez, Manuela, García-Closas, Montserrat, Geurts-Giele, Willemina R.R., Giles, Graham G., Guénel, Pascal, Gündert, Melanie, Hahnen, Eric, Hall, Per, Hamann, Ute, Harrington, Patricia A., He, Wei, Heikkilä, Päivi, Hooning, Maartje J., Hoppe, Reiner, Howell, Anthony, Humphreys, Keith, Jakubowska, Anna, Jung, Audrey Y., Keeman, Renske, Kristensen, Vessela N., Lubiński, Jan, Mannermaa, Arto, Manoochehri, Mehdi, Manoukian, Siranoush, Margolin, Sara, Mavroudis, Dimitrios, Milne, Roger L., Mulligan, Anna Marie, Newman, William G., Park-Simon, Tjoung-Won, Peterlongo, Paolo, Pharoah, Paul D.P., Rhenius, Valerie, Saloustros, Emmanouil, Sawyer, Elinor J., Schmutzler, Rita K., Shah, Mitul, Spurdle, Amanda B., Tomlinson, Ian, Truong, Thérèse, van Veen, Elke M., Vreeswijk, Maaike P.G., Wang, Qin, Wendt, Camilla, Yang, Xiaohong R., Nevanlinna, Heli, Devilee, Peter, Easton, Douglas F., and Schmidt, Marjanka K.

Published
2023
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43. Finding My Way-Advanced: can a web-based psychosocial intervention improve the mental quality of life for women with metastatic breast cancer vs attention-control? Study protocol of a randomised controlled trial

Author

Beatty, Lisa, Kemp, Emma, Butow, Phyllis, Girgis, Afaf, Hulbert-Williams, Nicholas, Kaambwa, Billingsley, Schofield, Penelope, Turner, Jane, Woodman, Richard, Boyle, Frances, Daly, Anthony, Jones, Amanda, Kiely, Belinda, Zdenkowski, Nicholas, and Koczwara, Bogda

Published
2022
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47. Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

Author

Juhrmann, Madeleine L, Butow, Phyllis N, Simpson, Paul, Boughey, Mark, Makeham, Meredith, and Clayton, Josephine M

Subjects
*MEDICAL protocols, *CONSENSUS (Social sciences), *PALLIATIVE treatment, *RESEARCH funding, *BENCHMARKING (Management), *MEDICAL care, *QUESTIONNAIRES, *EMERGENCY medical services, *DESCRIPTIVE statistics, *CONCEPTUAL structures, *PALLIATIVE medicine, *PARAMEDICINE, *DELPHI method
Abstract

Background: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. Aim: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. Setting/participants: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. Results: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. Conclusion: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice. [ABSTRACT FROM AUTHOR]

Published
2024
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48. From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Author

Best, Megan C, Butow, Phyllis, Savard, Jacqueline, Newson, Ainsley J, Campbell, Rachel, Vatter, Sabina, Napier, Christine E, Bartley, Nicci, Tucker, Katherine, Ballinger, Mandy L, Thomas, David M, and Project, the PiGeOn

Subjects
BIOPSY, CROSS-sectional method, TISSUES, RESEARCH funding, RESPONSIBILITY, QUESTIONNAIRES, INTERVIEWING, HEALTH policy, PRESERVATION of organs, tissues, etc., COST benefit analysis, DESCRIPTIVE statistics, THEMATIC analysis, RESEARCH methodology, CANCER patient psychology, PUBLIC administration, GENETIC testing, PATIENTS' attitudes, MOLECULAR diagnosis, CULTURAL pluralism, RULES
Abstract

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n  = 397) completed a questionnaire prior to undergoing MP (n  = 356/397). A subset (n  = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered. [ABSTRACT FROM AUTHOR]

Published
2024
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