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1. Maternal and neonatal outcomes after caesarean delivery in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

Author: Abadagan, Hippolyte, Abbas, N, Abdelatif, A Ibrahim, Abdoulaye, Traoré, Abd-rouf, A, Abduljalil, A, Abdulrahman, A, Abdurazig, S, Abokris, A, Abozaid, W, Abugassa, SOA, Abuhdema, F, Abujanah, SA, Abusamra, R, Abushnaf, A, Abusnina, SA, Abuzalout, TS, Ackermann, HM, Adamu, YB, Addanfour, A, Adeleke, DM, Adigun, TA, Adisa, AO, Adjignon, Sèhivè Valéry, Adu-Aryee, NA, Afolabi, BB, Agaba, AFX, Agaba, PKA, Aghadi, K, Agilla, H, Ahmed, B, Ahmed, El-Z, Ahmed, Al-J, Ahmed, M, Ahossi, Rene, Aji, SA, Akanyun, S, Akhideno, I, Akhter, M, Akinyemi, OA, Akkari, M, Akodjenou, Joseph, AL Samateh, AL, al Shams, ES, Alagbe-Briggs, OT, Alakkari, EA, Alalem, RB, Alashhab, M, Alatise, OI, Alatresh, A, Alayeb Alayeb, MSI, Albakosh, BA, Albert, F, Alberts, ANJD, Aldarrat, AD, Alfari, A, Alfetore, A, Algbali, M, Algddar, A, Algedar, HA, Alghafoud, IA, Alghazali, A, Alhajj, M, Alhendery Alhendery, A, Alhoty, FFH, Ali, A, Ali, YA, Alioune, Beye Seïdina, Alkassem, MA, Alkchr, MA, Alkesa, TS, Alkilani, A, Alkobty Alkobty, F, Allaye, Thomas, Alleesaib, SBM, Alli, A, Allopi, K, Allorto, NL, Almajbery, A, Almesmary, R, Almisslati, SHA, Almoraid, F, Alobeidi, H, Alomami, MA, Alphonsus, Christella S, Alqawi, OA, Alraheem, AA, Alsabri, SA, Alsayed, A, Alsellabi, B, Al-Serksi, M, Alshareef, MSA, Altagazi, AA, Aluvale, JS, Alwahedi, HW, Alzahra, EA, Alzarouk, MA, Al-Zubaidy, K, Amadou, M, Amadou, Maiga, Amanor-Boadu, Simbo D, Amer, Al-A, Amisi, BT, Amuthenu, MA, Anabah, TWA, Anani, Felix, Anderson, PGR, Andriamampionona, AGB, Andrianina, L, Anele, A, Angelin, R, Anjar, N, Antùnez, O, Antwi-Kusi, Akwasi, Anyanwu, LJC, Aribi, AA, Arowolo, OA, Arrey, O, Ashebir, Daniel Zemenfes, Assefa, SB, Assoum, Guy, Athanse, V, Athombo, JS, Atiku, M, Atito-Narh, E, Atomabe, Anatole, Attia, A, Aungraheeta, M, Aurélia, DMA, Ayandipo, OO, Ayebale, AET, Azzaidey, HMZ, Babajee, NB, Badi, HB, Badianga, EK, Baghni, RB, Bahta, MT, Bai, M, Baitchu, Y, Baloyi, AM, Bamuza, KA, Bamuza, MI, Bangure, L, Bankole, OB, Barongo, ML, Barow, MM, Basenero, Apollo, Bashiya, L, Basson, CH, Bechan, Sudha, Belhaj, S, Ben Mansour, MM, Benali, D, Benamour, ASB, Berhe, A, Bertie, JD, Bester, JJA, Bester, M, Bezuidenhout, JD, Bhagwan, K, Bhagwandass, DR, Bhat, KAP, Bhuiyan, MMZU, Biccard, Bruce M, Bigirimana, F, Bikuelo, CJ, Bilby, BE, Bingidimi, SS, Bischof, KE, Bishop, David G, Bitta, C, Bittaye, M, Biyase, Thuli, Blake, CA, Blignaut, E, Blignaut, F, BN Tanjong, BN, Bogoslovskiy, A, Boloko, PM, Boodhun, SKB, Bori, I, Boufas, F, Brand, M, Brouckaert, Nicholas T, Bruwer, JD, Buccimazza, I, Bula Bula, IM, Bulamba, Fred, Businge, BC, Bwambale, YB, Cacala, SRC, Cadersa, MA, Cairns, Chris, Carlos, F, Casey, ME, Castro, AC, Chabayanzara, ND, Chaibou, MS, Chaibva, TNO, Chakafa, NK, Chalo, C, Changfoot, C, Chari, MC, Chelbi, L, Chibanda, JT, Chifamba, HN, Chikh, N, Chikumba, E, Chimberengwa, P, Chirengwa, J, Chitungo, FM, Chiwanga, MC, Chokoe, MM, Chokwe, TM, Chrirangi, B, Christian, M, Church, B, Cisekedi, JC, Clegg-Lamptey, JN, Cloete, Estie, Coltman, Megan, Conradie, W, Constance, N, Coulibaly, Youssouf, Cronje, L, Da Silva, MA, Daddy, H, Dahim, L, Daliri, D, Dambaki, MS, Dasrath, A, Davids, JG, Davies, Gareth L, De Lange, JT, de Wet, JB, Dedekind, B, Degaulle, MA, Dehal, V, Deka, PD, Delinikaytis, S, Desalu, IS, Dewanou, Hubert, Deye, MB Moussa, Dhege, C, Diale, BSG, Dibwe, DF, Diedericks, BJS, Dippenaar, JM, Dippenaar, L, Diyoyo, MP, Djessouho, Edith, Dlamini, SN, Dodiyi-Manuel, A, Dokolwana, BA, Domoyyeri, DP, Drummond, Leanne W, du Plessis, DE, du Plessis, WM, du Preez, LJ, Dube, K, Dube, NZ, Dullab, KD, Duvenhage, R, Echem, RC, Edaigbini, SA, Egote, AK, Ehouni, A, Ekwen, G, Ekwunife, NC, El Hensheri, M, Elfaghi, IE, Elfagieh, MA, Elfallah, S, Elfiky, Mahmoud, Elgelany, S, Elghallal, AM, Elghandouri, MG, Elghazal, ZS, Elghobashy, AM, Elharati, FT, Elkhogia, Abdulaziz M, Elkhwildi, RM, Ellis, S, Elmadani, L, Elmadany, HB, Elmehdawi, H, Elmgadmi, A, Eloi, H, Elrafifi, D, Elsaadi, G, Elsaity, RB, Elshikhy, A, Eltaguri, M, Elwerfelli, A, Elyasir, IE, Elzoway, AZ, Elzufri, AM, Enendu, EO, Enicker, BC, Enwerem, EO, Esayas, R, Eshtiwi, M, Eshwehdi, AA, Esterhuizen, JL, Esterhuizen, Tonya M, Etuk, EB, Eurayet, O, Eyelade, OR, Fanjandrainy, RF, Fanou, Lionelle, Farina, Z, Fawzy, Maher, Feituri, A, Fernandes, NL, Ford, LM, Forget, Patrice, François, T, Freeman, T, Freeman, YBM, Gacii, VM, Gadi, B, Gagara, M, Gakenia, A, Gallou, PD, Gama, GGN, Gamal, MG, Gandy, YG, Ganesh, A, Gangaly, Diallo, Garcia, M, Gatheru, AP, Gaya, SSD, Gbéhadé, Oswald, Gerbel, G, Ghnain, A, Gigabhoy, R, Giles, DG, Girmaye, GT, Gitau, S, Githae, B, Gitta, Said, Gobin, Veekash, Goga, Riaz, Gomati, AAG, Gonzalez, ME, Gopall, J, Gordon, Christina Salmina, Gorelyk, O, Gova, M, Govender, K, Govender, P, Govender, S, Govindasamy, V, Green-Harris, JTK, Greenwood, MB, Grey-Johnson, SV, Grobbelaar, Mariette, Groenewald, MA, Grünewald, KK, Guegni, Ambroise, Guenane, M, Gueye, S, Guezo, Marius, Gunguwo, T, Gweder, MG, Gwila, M, Habimana, L, Hadecon, Rodrigue, Hadia, E, Hamadi, L, Hammouda, M, Hampton, MI, Hanta, R, Hardcastle, Tim C, Hariniaina, JA, Hariparsad, S, Harissou, AH, Harrichandparsad, R, Hasan, SHA, Hashmi, HB, Hayes, MP, Hdud, A, Hebli, SH, Heerah, HMSN, Hersi, S, Hery, AH, Hewitt-Smith, Adam, Hlako, TC, Hodges, SCH, Hodgson, Richard Eric, Hokoma, M, Holder, H, Holford, EB, Horugavye, E, Houston, C, Hove, M, Hugo, D, Human, CM, Hurri, H, Huwidi, O, Ibrahim, AI, Ibrahim, Traoré, Idowu, OK, Igaga, IE, Igenge, John, Ihezie, O, Ikandi, K, Ike, IAR, Ikuku, JJN, Ilbarasi, MN, Ilunga, IBB, Ilunga, JPM, Imbangu, NAV, Imessaoudene, Z, Imposo, DH, Iraya, AM, Isaacs, M, Isiguzo, M, Issoufou, A, Izquirdo, P, Jaber, A, Jaganath, UV, Jallow, CS, Jamabo, S, Jamal, ZS, Janneh, L, Jannetjies, MJ, Jasim, I, Jaworska, Megan AJ, Jay Narain, S, Jermi, K, Jimoh, R, Jithoo, S, Johnson, M, Joomye, S, Judicael, RM, Judicaël, M, Juwid, A, Jwambi, LP, Kabango, R, Kabangu, JK, Kabatoro, DK, Kabongo, AN, Kabongo, K, Kabongo, LT, Kabongo, MD, Kady, N, Kafu, S, Kaggya, M, Kaholongo, BNK, Kairuki, PCK, Kakololo, SI, Kakudji, K, Kalisa, Amina, Kalisa, R, Kalufwelu, MR, Kalume, S, Kamanda, RJ, Kangili, MK, Kanoun, H, Kapesa, Kapp, P, Karanja, JK, Karar, M, Kariuki, K, Kaseke, K, Kashuupulwa, PNK, Kasongo, KJP, Kassa, SK, Kateregga, GK, Kathrada, MIS, Katompwa, PM, Katsukunya, L, Kavuma, KAM, Khalfallah, Khamajeet, A, Khetrish, SB, Kibandwa, Kibochi, W, Kilembe, AM, Kintu, AK, Kipng'etich, B, Kiprop, B, Kissoon, VMK, Kisten, Theroshnie K, Kiwanuka, JK, Kluyts, Hyla-Louise, Knox, MEK, Koledale, AK, Koller, VL, Kolotsi, MA, Kongolo, M, Konwuoh, ND, Koperski, WJ, Koraz, MYK, Kornilov, AA, Koto, M Zach, Kransingh, Samantha, Krick, D, Kruger, S, Kruse, C, Kuhn, W, Kuhn, WP, Kukembila, AM, Kule, KL, Kumar, M, Kusel, Belinda S, Kusweje, VK, Kuteesa, KJ, Kutor, YY, Labib, MA, Laksari, M, Lanos, F, Lawal, TA, Le Manach, Yannick, Lee, C, Lekoloane, RM, Lelo, SN, Lerutla, B, Lerutla, MT, Levin, AI, Likongo, TB, Limbajee, ML, Linyama, DM, Lionnet, C, Liwani, MM, Loots, E, Lopez, A Garrido, Lubamba, CLC, Lumbala, KF, Lumbamba, AJM, Lumona, John, Lushima, RF, Luthuli, L, Luweesi, HL, Lyimo, TSK, Maakamedi, HM, Mabaso, BM, Mabina, M, Maboya, ME, Macharia, I, Macheka, AM, Machowski, AZ, Madiba, Thandinkosi E, Madsen, ASM, Madzimbamuto, Farai, Madzivhe, LJ, Mafafo, SC, Maghrabi, M, Mahamane, Diango Djibo, Maharaj, A, Maharaj, AD, Mahmud, MR, Mahoko, M, Mahomedy, NA, Mahomva, O, Mahureva, TM, Maila, RK, Maimane, DM, Maimbo, M, Maina, SN, Maiwald, Dela A, Maiyalagan, MD, Majola, N, Makgofa, N, Makhanya, V, Makhaye, WP, Makhlouf, NM, Makhoba, S, Makopa, EK, Makori, O, Makupe, Alex M, Makwela, MA, Malefo, ME, Malongwe, SM, Maluleke, DM, Maluleke, MR, Mamadou, K Touré, Mamaleka, MP, Mampangula, Y, Mamy, RM, Mananjara, MNR, Mandarry, MTM, Mangoo, DM, Manirimbere, C, Manneh, A, Mansour, A, Mansour, I, Manvinder, M, Manyere, DV, Manzini, VT, Manzombi, JK, Mapanda, PM, Marais, LC, Maranga, O, Maritz, JPB, Mariwa, FK, Masela, RS, Mashamba, MM, Mashava, Doreen M, Mashile, MV, Mashoko, E, Masia, OR, Masipa, JN, Masiyambiri, ATM, Matenchi, MW, Mathangani, W, Mathe, RC, Matola, Christopher Y, Matondo, PM, Matos-Puig, R, Matoug, FFH, Matubatuba, JT, Mavesere, HP, Mavhungu, R, Maweni, S, Mawire, CJM, Mawisa, T, Mayeza, S, Mbadi, R, Mbayabu, M, Mbewe, N, Mbombo, WD, Mbuyi, T, Mbuyi, WMS, Mbuyisa, MW, Mbwele, Bernard, Mehyaoui, RM, Menkiti, ID, Mesarieki, LVM, Metali, A, Mewanou, Serge, Mgonja, L, Mgoqo, N, Mhatu, S, Mhlari, TM, Miima, S, Milod, IM, Minani, P, Mitema, F, Mlotshwa, A, Mmasi, JE, Mniki, T, Mofikoya, BO, Mogale, JO, Mohamed, A, Mohamed, S, Mohamed, TS, Mohamed, AM, Mohamed, P, Mohammed, I, Mohammed, FAM, Mohammed, M, Mohammed, NM, Mohlala, MP, Mokretar, R, Molokoane, FM, Mongwe, KN, Montenegro, L, Montwedi, OD, Moodie, QK, Moopanar, M, Morapedi, M, Morulana, TG, Moses, VL, Mossy, P, Mostafa, H, Motilall, SR, Motloutsi, SP, Moussa, Kanté, Moutari, M, Moyo, OM, Mphephu, PE, Mrara, Busi, Msadabwe, C, Mtongwe, VM, Mubeya, FK, Muchiri, K, Mugambi, J, Muguti, GIM, Muhammad, AB, Mukama, IF, Mukenga, MM, Mukinda, FK, Mukuna, PM, Mungherera, ARW, Munlemvo, Dolly M, Munyaradzi, TW, Munyika, AA, Muriithi, JM, Muroonga, MP, Murray, R, Mushangwe, VK, Mushaninga, M, Musiba, VEM, Musowoya, JM, Mutahi, S, Mutasiigwa, MGH, Mutizira, G, Muturi, A, Muzenda, T, Mvwala, KR, Mvwama, NM, Mwale, A, Mwaluka, CN, Mwamba, JD, Mwanga, HAM, Mwangi, CM, Mwansa, S, Mwenda, V, Mwepu, IM, Mwiti, TM, Mzezewa, SZ, Nabela, L, Nabukenya, MTN, Nabulindo, SM, Naicker, K, Naidoo, D, Naidoo, L, Naidoo, LC, Naidoo, N, Naidoo, R, Naidoo, RD, Naidoo, S, Naidoo, TD, Naidu, TK, Najat, NZ, Najm, Y, Nakandungile, F, Nakangombe, P, Namata, CN, Namegabe, ES, Nansook, A, Nansubuga, NP, Nantulu, C, Nascimento, Rodrigue, Naude, GT, Nchimunya, H, Ndaie, MA, Ndarukwa, PN, Ndasi, Henry, Ndayisaba, Gabriel, Ndegwa, D, Ndikumana, R, Ndonga, Andrew KN, Ndung'u, C, Neil, MC, Nel, MS, Neluheni, EV, Nesengani, DS, Nesengani, NT, Netshimboni, LE, Ngalala, AM, Ngari, BM, Ngari, NBM, Ngatia, E, Ngcobo, GK, Ngcobo, TS, Ngorora, D, Ngouane, D, Ngugi, K, Ngumi, Zipporah WW, Nibe, Z, Ninise, E, Niyondiko, JC, Njenga, PW, Njenga, MN, Njoroge, M, Njoroge, S, Njuguna, W, Njuki, PN, Nkesha, T, Nkuebe, TN, Nkuliyingoma, NP, Nkunjana, M, Nkwabi, Ernest, Nkwine, RN, Nnaji, C, Notoane, I, Nsalamba, Shaaban, Ntlhe, LM, Ntoto, C, Ntueba, B, Nyassi, MT, Nyatela-Akinrinmade, Z, Nyawanda, HO, Nyokabi, NN, Nziene, VN, Obadiah, S, Ochieng, OJP, Odia, PK, Oduor, OEO, Ogboli-Nwasor, EO, Ogendo, SWO, Ogunbode, O, Ogundiran, TO, Ogutu, O, Ojewola, RW, Ojujo, M, Ojuka, DO, Okelo, OS, Okiya, S, Okonu, N, Olang, PR, Omigbodun, Akinyinka O, Omoding, S, Omoshoro-Jones, J, Onyango, R, Onyegbule, A, Orjiako, O, Osazuwa, MO, Oscar, Kpatinvo, Osinaike, BB, Osinowo, AO, Othin, OM, Otman, FFH, Otokwala, J, Ouanes, F, Oumar, Ongoïba, Ousseini, AO, Padayachee, S, Pahlana, SM, Pansegrouw, J, Paruk, FP, Patel, MB, Patel-Mujajati, Ushmaben, Patience, AP, Pearse, Rupert M, Pembe, JD, Pengemale, GN, Perez, N, Perez, MF Aguilera, Peter, A Mallier, Phaff, M, Pheeha, RM, Pienaar, BH, Pillay, V, Pilusa, KA, Pochana, MP, Polishchuk, O, Porrill, Owen S, Post, EF, Prosper, A, Pupyshev, M, Rabemazava, A, Rabiou, MS, Rademan, L, Rademeyer, M, Raherison, RAR, Rajah, FR, Rajcoomar, MSR, Rakhda, Z, Rakotoarijaona, AHR, Rakotoarisoa, AHN, Rakotoarison, Sylvia R, Rakotoarison, RR, Rakotoniaina, François, Ramadan, L, Ramananasoa, MLR, Rambau, M, Ramchurn, TPR, Ramilson, HE, Ramjee, Rajesh J, Ramnarain, H, Ramos, R, Rampai, TJ, Ramphal, SR, Ramsamy, T, Ramuntshi, R, Randolph, R, Randriambololona, DMA, Ras, WAP, Rasolondraibe, RAF, Rasolonjatovo, JDLC, Rautenbach, RM, Ray, S, Rayne, Sarah R, Razanakoto, FAR, Reddy, SR, Reed, Anthony R, Rian, JR, Rija, FR, Rink, B, Robelie, AT, Roberts, CA, Rocher, AGL, Rocher, S, Rodseth, Reitze N, Rois, I, Rois, W, Rokhsi, S, Roos, J, Rorke, Nicolette F, Roura, H, Rousseau, FJ, Rousseau, N, Royas, L, Roytowski, D, Rungan, Devan, Rwehumbiza, SSR, Ryabchiy, BB, Ryndine, V, Saaiman, CR, Sabwa, HK, Sadat, S, Saed, SS, Salaheddin, E, Salaou, H, Saleh, M, Salisu-Kabara, HM, Sama, Hamza Doles, Samateh, Ahmadou L, Sam-Awortwi (Jnr), W, Samuel, N, Sanduku, DK, Sani, Chaibou M, Sanyang, LN, Sarah, HN, Sarkin-Pawa, A, Sathiram, R, Saurombe, T, Schutte, H, Sebei, MP, Sedekounou, MD, Segooa, MP, Semenya, EM, Semo, BO, Sendagire, CS, Senoga, SA, Senusi, FS, Serdyn, T, Seshibe, MD, Shah, GB, Shamamba, R, Shambare, CS, Shangase, TN, Shanin, SH, Shefren, IE, Sheshe, AA, Shittu, OB, Shkirban, AS, Sholadoye, T, Shubba, A, Sigcu, N, Sihope, SE, Sikazwe, DS, Sikombe, BS, Simaga Abdoul, K, Simo, WAG, Singata, K, Singh, AS, Singh, S, Singh, Usha, Sinoamadi, V, Sipuka, N, Sithole, NLM, Sitima, S, Skinner, David Lee, Skinner, GC, Smith, OI, Smits, CAG, Sofia, MSI, Sogoba, Gaoussou, Sohoub, A, Sookun, SS, Sosinska, O, Souhe, Rosalie, Souley, G, Souleymane, Thiam, Spicer, JM, Spijkerman, Sandra, Steinhaus, H, Steyn, A, Steyn, G, Steyn, HC, Stoltenkamp, Heidi L, Stroyer, S, Swaleh, A, Swayeb, E, Szpytko, AJ, Taiwo, NA, Tarhuni, A, Tarloff, D, Tchaou, Blaise, Tchegnonsi, Charles, Tchoupa, M, Teeka, MO, Thakoor, B, Theunissen, MM, Thomas, BP, Thomas, MB, Thotharam, A, Tobiko, O, Torborg, AM, Tshisekedi, SM, Tshisola, SK, Tshitangano, R, Tshivhula, F, Tshuma, HT, Tumukunde, Janat, Tun, M, Udo, IA, Uhuebor, DI, Umeh, KU, Usenbo, AO, Uwiteyimbabazi, JdD, Van der Merwe, DJ, van der Merwe, FH, van der Walt, JE, van Dyk, Dominique, Van Dyk, JG, van Niekerk, JJS, van Wyk, S, van Zyl, HA, Veerasamy, B, Venter, PJ, Vermeulen, AJ, Villarreal, R, Visser, J, Visser, L, Voigt, M, von Rahden, Richard P, Wafa, A, Wafula, A, Wambugu, PK, Waryoba, P, Waweru, EN, Weideman, M, Wise, Robert D, Wynne, EE, Yahya, AI, Yahya, AA, Yahya, R, Yakubu, Y, Yanga, JJ, Yangazov, YM, Yousef, O, Yousef, G, Youssouf, Coulibaly, Yunus, AA, Yusuf, AS, Zeiton, AZ, Zentuti, HZ, Zepharine, Henry, Zerihun, AB, Zhou, S, Zidan, A, Zié, Sanogo Zimogo, Zinyemba, CZ, Zo, A, Zomahoun, Lidwine, Zoobei, NZ, Zoumenou, Eugene, Zubia, NZ, Bishop, David, Dyer, Robert A, Maswime, Salome, Tumukunde, Janat T, Madzimbamuto, Farai D, Ndonga, Andrew K N, Ngumi, Zipporah W W, and Mehyaoui, Ryad
Published: 2019
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2. Developing a Preliminary Conceptual Framework for Guidelines on Inclusion of Patient Reported-Outcome Measures (PROMs) in Clinical Quality Registries

Author: Ruseckaite R, Maharaj AD, Krysinska K, Dean J, and Ahern S
Subjects: quality of life, registry, outcomes, patient voice, Medicine (General), R5-920
Abstract: Rasa Ruseckaite, Ashika D Maharaj, Karolina Krysinska, Joanne Dean, Susannah Ahern Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, AustraliaCorrespondence: Rasa RuseckaiteDepartment of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria 3004, AustraliaTel +61 3 9903 0437Email rasa.ruseckaite@monash.eduPurpose: Patient-centred and value-based health-care organisations are increasingly recognising the importance of the patient perspective in the measurement and evaluation of health outcomes. This has been primarily implemented using patient-reported outcome measures (PROMs). Clinical quality registries (CQRs) are specifically designed to improve direct clinical care, benchmark health-care provision and inform health service planning and policy. Despite CQRs having incorporated the patient perspective to support the evaluation of health-care provision, no evidence-based guidelines for inclusion of PROMs in CQRs exist. This has led to substantial heterogeneity in capturing and reporting PROMs within this setting. This publication is the first in a series describing the development of evidence-informed guidelines for PROMs inclusion within CQRs in Australia.Methods: This study consisted of three components: 1) a literature review of existing evidence of guidelines, enablers, barriers, and lessons learnt of PROMs use within the CQRs setting; 2) a survey of Australian CQRs to determine current practices for PROMs use and reporting; and 3) development of a preliminary conceptual framework for PROMs inclusion in CQRs.Results: Content analysis of the literature review and survey of 66 Australian registries elicited eight categories for the conceptual framework. The framework covers eight components: rationale, setting, ethics, selection of PROMs, administration, data management, statistical methods, feedback, and reporting.Conclusion: We developed a preliminary conceptual framework, which classified findings, from both the literature and the survey, into broad categories ranging from initial development to outcome dissemination providing the structure for development of guidelines in the next phase of this project, engaging national and international leaders in health-related quality of life research, clinicians, researchers, patient advocates and consumers.Keywords: quality of life, registry, outcomes, patient voice
Published: 2019

3. Perioperative patient outcomes in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

Author: Abadagan, Hippolyte, Abbas, N, Abdelatif, A Ibrahim, Abdoulaye, Traoré, Abd-rouf, A, Abduljalil, A, Abdulrahman, A, Abdurazig, S, Abokris, A, Abozaid, W, Abugassa, SOA, Abuhdema, F, Abujanah, SA, Abusamra, R, Abushnaf, A, Abusnina, SA, Abuzalout, TS, Ackermann, HM, Adamu, YB, Addanfour, A, Adeleke, DM, Adigun, TA, Adisa, AO, Adjignon, Sèhivè Valéry, Adu-Aryee, NA, Afolabi, BB, Agaba, AFX, Agaba, PKA, Aghadi, K, Agilla, H, Ahmed, B, Ahmed, El-Z, Ahmed, Al-J, Ahmed, M, Ahossi, Rene, Aji, SA, Akanyun, S, Akhideno, I, Akhter, M, Akinyemi, OA, Akkari, M, Akodjenou, Joseph, AL Samateh, AL, al Shams, ES, Alagbe-Briggs, OT, Alakkari, EA, Alalem, RB, Alashhab, M, Alatise, OI, Alatresh, A, Alayeb Alayeb, MSI, Albakosh, BA, Albert, F, Alberts, ANJD, Aldarrat, AD, Alfari, A, Alfetore, A, Algbali, M, Algddar, A, Algedar, HA, Alghafoud, IA, Alghazali, A, Alhajj, M, Alhendery Alhendery, A, Alhoty, FFH, Ali, A, Ali, YA, Alioune, Beye Seïdina, Alkassem, MA, Alkchr, MA, Alkesa, TS, Alkilani, A, Alkobty Alkobty, F, Allaye, Thomas, Alleesaib, SBM, Alli, A, Allopi, K, Allorto, NL, Almajbery, A, Almesmary, R, Almisslati, SHA, Almoraid, F, Alobeidi, H, Alomami, MA, Alphonsus, Christella S, Alqawi, OA, Alraheem, AA, Alsabri, SA, Alsayed, A, Alsellabi, B, Al-Serksi, M, Alshareef, MSA, Altagazi, AA, Aluvale, JS, Alwahedi, HW, Alzahra, EA, Alzarouk, MA, Al-Zubaidy, K, Amadou, M, Amadou, Maiga, Amanor-Boadu, Simbo D, Amer, Al-A, Amisi, BT, Amuthenu, MA, Anabah, TWA, Anani, Felix, Anderson, PGR, Andriamampionona, AGB, Andrianina, L, Anele, A, Angelin, R, Anjar, N, Antùnez, O, Antwi-Kusi, Akwasi, Anyanwu, LJC, Aribi, AA, Arowolo, OA, Arrey, O, Ashebir, Daniel Zemenfes, Assefa, SB, Assoum, Guy, Athanse, V, Athombo, JS, Atiku, M, Atito-Narh, E, Atomabe, Anatole, Attia, A, Aungraheeta, M, Aurélia, DMA, Ayandipo, OO, Ayebale, AET, Azzaidey, HMZ, Babajee, NB, Badi, HB, Badianga, EK, Baghni, RB, Bahta, MT, Bai, M, Baitchu, Y, Baloyi, AM, Bamuza, KA, Bamuza, MI, Bangure, L, Bankole, OB, Barongo, ML, Barow, MM, Basenero, Apollo, Bashiya, L, Basson, CH, Bechan, Sudha, Belhaj, S, Ben Mansour, MM, Benali, D, Benamour, ASB, Berhe, A, Bertie, JD, Bester, JJA, Bester, M, Bezuidenhout, JD, Bhagwan, K, Bhagwandass, DR, Bhat, KAP, Bhuiyan, MMZU, Biccard, Bruce M, Bigirimana, F, Bikuelo, CJ, Bilby, BE, Bingidimi, SS, Bischof, KE, Bishop, David G, Bitta, C, Bittaye, M, Biyase, Thuli, Blake, CA, Blignaut, E, Blignaut, F, BN Tanjong, BN, Bogoslovskiy, A, Boloko, PM, Boodhun, SKB, Bori, I, Boufas, F, Brand, M, Brouckaert, Nicholas T, Bruwer, JD, Buccimazza, I, Bula Bula, IM, Bulamba, Fred, Businge, BC, Bwambale, YB, Cacala, SRC, Cadersa, MA, Cairns, Chris, Carlos, F, Casey, ME, Castro, AC, Chabayanzara, ND, Chaibou, MS, Chaibva, TNO, Chakafa, NK, Chalo, C, Changfoot, C, Chari, MC, Chelbi, L, Chibanda, JT, Chifamba, HN, Chikh, N, Chikumba, E, Chimberengwa, P, Chirengwa, J, Chitungo, FM, Chiwanga, MC, Chokoe, MM, Chokwe, TM, Chrirangi, B, Christian, M, Church, B, Cisekedi, JC, Clegg-Lamptey, JN, Cloete, Estie, Coltman, Megan, Conradie, W, Constance, N, Coulibaly, Youssouf, Cronje, L, Da Silva, MA, Daddy, H, Dahim, L, Daliri, D, Dambaki, MS, Dasrath, A, Davids, JG, Davies, Gareth L, De Lange, JT, de Wet, JB, Dedekind, B, Degaulle, MA, Dehal, V, Deka, PD, Delinikaytis, S, Desalu, IS, Dewanou, Hubert, Deye, MB Moussa, Dhege, C, Diale, BSG, Dibwe, DF, Diedericks, BJS, Dippenaar, JM, Dippenaar, L, Diyoyo, MP, Djessouho, Edith, Dlamini, SN, Dodiyi-Manuel, A, Dokolwana, BA, Domoyyeri, DP, Drummond, Leanne W, du Plessis, DE, du Plessis, WM, du Preez, LJ, Dube, K, Dube, NZ, Dullab, KD, Duvenhage, R, Echem, RC, Edaigbini, SA, Egote, AK, Ehouni, A, Ekwen, G, Ekwunife, NC, El Hensheri, M, Elfaghi, IE, Elfagieh, MA, Elfallah, S, Elfiky, Mahmoud, Elgelany, S, Elghallal, AM, Elghandouri, MG, Elghazal, ZS, Elghobashy, AM, Elharati, FT, Elkhogia, Abdulaziz M, Elkhwildi, RM, Ellis, S, Elmadani, L, Elmadany, HB, Elmehdawi, H, Elmgadmi, A, Eloi, H, Elrafifi, D, Elsaadi, G, Elsaity, RB, Elshikhy, A, Eltaguri, M, Elwerfelli, A, Elyasir, IE, Elzoway, AZ, Elzufri, AM, Enendu, EO, Enicker, BC, Enwerem, EO, Esayas, R, Eshtiwi, M, Eshwehdi, AA, Esterhuizen, JL, Esterhuizen, Tonya M, Etuk, EB, Eurayet, O, Eyelade, OR, Fanjandrainy, RF, Fanou, Lionelle, Farina, Z, Fawzy, Maher, Feituri, A, Fernandes, NL, Ford, LM, Forget, Patrice, François, T, Freeman, T, Freeman, YBM, Gacii, VM, Gadi, B, Gagara, M, Gakenia, A, Gallou, PD, Gama, GGN, Gamal, MG, Gandy, YG, Ganesh, A, Gangaly, Diallo, Garcia, M, Gatheru, AP, Gaya, SSD, Gbéhadé, Oswald, Gerbel, G, Ghnain, A, Gigabhoy, R, Giles, DG, Girmaye, GT, Gitau, S, Githae, B, Gitta, Said, Gobin, Veekash, Goga, Riaz, Gomati, AAG, Gonzalez, ME, Gopall, J, Gordon, Christina Salmina, Gorelyk, O, Gova, M, Govender, K, Govender, P, Govender, S, Govindasamy, V, Green-Harris, JTK, Greenwood, MB, Grey-Johnson, SV, Grobbelaar, Mariette, Groenewald, MA, Grünewald, KK, Guegni, Ambroise, Guenane, M, Gueye, S, Guezo, Marius, Gunguwo, T, Gweder, MG, Gwila, M, Habimana, L, Hadecon, Rodrigue, Hadia, E, Hamadi, L, Hammouda, M, Hampton, MI, Hanta, R, Hardcastle, Tim C, Hariniaina, JA, Hariparsad, S, Harissou, AH, Harrichandparsad, R, Hasan, SHA, Hashmi, HB, Hayes, MP, Hdud, A, Hebli, SH, Heerah, HMSN, Hersi, S, Hery, AH, Hewitt-Smith, Adam, Hlako, TC, Hodges, SCH, Hodgson, Richard Eric, Hokoma, M, Holder, H, Holford, EB, Horugavye, E, Houston, C, Hove, M, Hugo, D, Human, CM, Hurri, H, Huwidi, O, Ibrahim, AI, Ibrahim, Traoré, Idowu, OK, Igaga, IE, Igenge, John, Ihezie, O, Ikandi, K, Ike, IAR, Ikuku, JJN, Ilbarasi, MN, Ilunga, IBB, Ilunga, JPM, Imbangu, NAV, Imessaoudene, Z, Imposo, DH, Iraya, AM, Isaacs, M, Isiguzo, M, Issoufou, A, Izquirdo, P, Jaber, A, Jaganath, UV, Jallow, CS, Jamabo, S, Jamal, ZS, Janneh, L, Jannetjies, MJ, Jasim, I, Jaworska, Megan AJ, Jay Narain, S, Jermi, K, Jimoh, R, Jithoo, S, Johnson, M, Joomye, S, Judicael, RM, Judicaël, M, Juwid, A, Jwambi, LP, Kabango, R, Kabangu, JK, Kabatoro, DK, Kabongo, AN, Kabongo, K, Kabongo, LT, Kabongo, MD, Kady, N, Kafu, S, Kaggya, M, Kaholongo, BNK, Kairuki, PCK, Kakololo, SI, Kakudji, K, Kalisa, Amina, Kalisa, R, Kalufwelu, MR, Kalume, S, Kamanda, RJ, Kangili, MK, Kanoun, H, Kapesa, Kapp, P, Karanja, JK, Karar, M, Kariuki, K, Kaseke, K, Kashuupulwa, PNK, Kasongo, KJP, Kassa, SK, Kateregga, GK, Kathrada, MIS, Katompwa, PM, Katsukunya, L, Kavuma, KAM, Khalfallah, Khamajeet, A, Khetrish, SB, Kibandwa, Kibochi, W, Kilembe, AM, Kintu, AK, Kipng'etich, B, Kiprop, B, Kissoon, VMK, Kisten, Theroshnie K, Kiwanuka, JK, Kluyts, Hyla-Louise, Knox, MEK, Koledale, AK, Koller, VL, Kolotsi, MA, Kongolo, M, Konwuoh, ND, Koperski, WJ, Koraz, MYK, Kornilov, AA, Koto, M Zach, Kransingh, Samantha, Krick, D, Kruger, S, Kruse, C, Kuhn, W, Kuhn, WP, Kukembila, AM, Kule, KL, Kumar, M, Kusel, Belinda S, Kusweje, VK, Kuteesa, KJ, Kutor, YY, Labib, MA, Laksari, M, Lanos, F, Lawal, TA, Le Manach, Yannick, Lee, C, Lekoloane, RM, Lelo, SN, Lerutla, B, Lerutla, MT, Levin, AI, Likongo, TB, Limbajee, ML, Linyama, DM, Lionnet, C, Liwani, MM, Loots, E, Lopez, A Garrido, Lubamba, CLC, Lumbala, KF, Lumbamba, AJM, Lumona, John, Lushima, RF, Luthuli, L, Luweesi, HL, Lyimo, TSK, Maakamedi, HM, Mabaso, BM, Mabina, M, Maboya, ME, Macharia, I, Macheka, AM, Machowski, AZ, Madiba, Thandinkosi E, Madsen, ASM, Madzimbamuto, Farai, Madzivhe, LJ, Mafafo, SC, Maghrabi, M, Mahamane, Diango Djibo, Maharaj, A, Maharaj, AD, Mahmud, MR, Mahoko, M, Mahomedy, NA, Mahomva, O, Mahureva, TM, Maila, RK, Maimane, DM, Maimbo, M, Maina, SN, Maiwald, Dela A, Maiyalagan, MD, Majola, N, Makgofa, N, Makhanya, V, Makhaye, WP, Makhlouf, NM, Makhoba, S, Makopa, EK, Makori, O, Makupe, Alex M, Makwela, MA, Malefo, ME, Malongwe, SM, Maluleke, DM, Maluleke, MR, Mamadou, K Touré, Mamaleka, MP, Mampangula, Y, Mamy, RM, Mananjara, MNR, Mandarry, MTM, Mangoo, DM, Manirimbere, C, Manneh, A, Mansour, A, Mansour, I, Manvinder, M, Manyere, DV, Manzini, VT, Manzombi, JK, Mapanda, PM, Marais, LC, Maranga, O, Maritz, JPB, Mariwa, FK, Masela, RS, Mashamba, MM, Mashava, Doreen M, Mashile, MV, Mashoko, E, Masia, OR, Masipa, JN, Masiyambiri, ATM, Matenchi, MW, Mathangani, W, Mathe, RC, Matola, Christopher Y, Matondo, PM, Matos-Puig, R, Matoug, FFH, Matubatuba, JT, Mavesere, HP, Mavhungu, R, Maweni, S, Mawire, CJM, Mawisa, T, Mayeza, S, Mbadi, R, Mbayabu, M, Mbewe, N, Mbombo, WD, Mbuyi, T, Mbuyi, WMS, Mbuyisa, MW, Mbwele, Bernard, Mehyaoui, RM, Menkiti, ID, Mesarieki, LVM, Metali, A, Mewanou, Serge, Mgonja, L, Mgoqo, N, Mhatu, S, Mhlari, TM, Miima, S, Milod, IM, Minani, P, Mitema, F, Mlotshwa, A, Mmasi, JE, Mniki, T, Mofikoya, BO, Mogale, JO, Mohamed, A, Mohamed, S, Mohamed, TS, Mohamed, AM, Mohamed, P, Mohammed, I, Mohammed, FAM, Mohammed, M, Mohammed, NM, Mohlala, MP, Mokretar, R, Molokoane, FM, Mongwe, KN, Montenegro, L, Montwedi, OD, Moodie, QK, Moopanar, M, Morapedi, M, Morulana, TG, Moses, VL, Mossy, P, Mostafa, H, Motilall, SR, Motloutsi, SP, Moussa, Kanté, Moutari, M, Moyo, OM, Mphephu, PE, Mrara, Busi, Msadabwe, C, Mtongwe, VM, Mubeya, FK, Muchiri, K, Mugambi, J, Muguti, GIM, Muhammad, AB, Mukama, IF, Mukenga, MM, Mukinda, FK, Mukuna, PM, Mungherera, ARW, Munlemvo, Dolly M, Munyaradzi, TW, Munyika, AA, Muriithi, JM, Muroonga, MP, Murray, R, Mushangwe, VK, Mushaninga, M, Musiba, VEM, Musowoya, JM, Mutahi, S, Mutasiigwa, MGH, Mutizira, G, Muturi, A, Muzenda, T, Mvwala, KR, Mvwama, NM, Mwale, A, Mwaluka, CN, Mwamba, JD, Mwanga, HAM, Mwangi, CM, Mwansa, S, Mwenda, V, Mwepu, IM, Mwiti, TM, Mzezewa, SZ, Nabela, L, Nabukenya, MTN, Nabulindo, SM, Naicker, K, Naidoo, D, Naidoo, L, Naidoo, LC, Naidoo, N, Naidoo, R, Naidoo, RD, Naidoo, S, Naidoo, TD, Naidu, TK, Najat, NZ, Najm, Y, Nakandungile, F, Nakangombe, P, Namata, CN, Namegabe, ES, Nansook, A, Nansubuga, NP, Nantulu, C, Nascimento, Rodrigue, Naude, GT, Nchimunya, H, Ndaie, MA, Ndarukwa, PN, Ndasi, Henry, Ndayisaba, Gabriel, Ndegwa, D, Ndikumana, R, Ndonga, Andrew KN, Ndung'u, C, Neil, MC, Nel, MS, Neluheni, EV, Nesengani, DS, Nesengani, NT, Netshimboni, LE, Ngalala, AM, Ngari, BM, Ngari, NBM, Ngatia, E, Ngcobo, GK, Ngcobo, TS, Ngorora, D, Ngouane, D, Ngugi, K, Ngumi, Zipporah WW, Nibe, Z, Ninise, E, Niyondiko, JC, Njenga, PW, Njenga, MN, Njoroge, M, Njoroge, S, Njuguna, W, Njuki, PN, Nkesha, T, Nkuebe, TN, Nkuliyingoma, NP, Nkunjana, M, Nkwabi, Ernest, Nkwine, RN, Nnaji, C, Notoane, I, Nsalamba, Shaaban, Ntlhe, LM, Ntoto, C, Ntueba, B, Nyassi, MT, Nyatela-Akinrinmade, Z, Nyawanda, HO, Nyokabi, NN, Nziene, VN, Obadiah, S, Ochieng, OJP, Odia, PK, Oduor, OEO, Ogboli-Nwasor, EO, Ogendo, SWO, Ogunbode, O, Ogundiran, TO, Ogutu, O, Ojewola, RW, Ojujo, M, Ojuka, DO, Okelo, OS, Okiya, S, Okonu, N, Olang, PR, Omigbodun, Akinyinka O, Omoding, S, Omoshoro-Jones, J, Onyango, R, Onyegbule, A, Orjiako, O, Osazuwa, MO, Oscar, Kpatinvo, Osinaike, BB, Osinowo, AO, Othin, OM, Otman, FFH, Otokwala, J, Ouanes, F, Oumar, Ongoïba, Ousseini, AO, Padayachee, S, Pahlana, SM, Pansegrouw, J, Paruk, FP, Patel, MB, Patel, Ushmaben, Patience, AP, Pearse, Rupert M, Pembe, JD, Pengemale, GN, Perez, N, Perez, MF Aguilera, Peter, A Mallier, Phaff, M, Pheeha, RM, Pienaar, BH, Pillay, V, Pilusa, KA, Pochana, MP, Polishchuk, O, Porrill, Owen S, Post, EF, Prosper, A, Pupyshev, M, Rabemazava, A, Rabiou, MS, Rademan, L, Rademeyer, M, Raherison, RAR, Rajah, FR, Rajcoomar, MSR, Rakhda, Z, Rakotoarijaona, AHR, Rakotoarisoa, AHN, Rakotoarison, Sylvia R, Rakotoarison, RR, Ramadan, L, Ramananasoa, MLR, Rambau, M, Ramchurn, TPR, Ramilson, HE, Ramjee, Rajesh J, Ramnarain, H, Ramos, R, Rampai, TJ, Ramphal, SR, Ramsamy, T, Ramuntshi, R, Randolph, R, Randriambololona, DMA, Ras, WAP, Rasolondraibe, RAF, Rasolonjatovo, JDLC, Rautenbach, RM, Ray, S, Rayne, Sarah R, Razanakoto, FAR, Reddy, SR, Reed, Anthony R, Rian, JR, Rija, FR, Rink, B, Robelie, AT, Roberts, CA, Rocher, AGL, Rocher, S, Rodseth, Reitze N, Rois, I, Rois, W, Rokhsi, S, Roos, J, Rorke, Nicolette F, Roura, H, Rousseau, FJ, Rousseau, N, Royas, L, Roytowski, D, Rungan, Devan, Rwehumbiza, SSR, Ryabchiy, BB, Ryndine, V, Saaiman, CR, Sabwa, HK, Sadat, S, Saed, SS, Salaheddin, E, Salaou, H, Saleh, M, Salisu-Kabara, HM, Sama, Hamza Doles, Samateh, Ahmadou L, Sam-Awortwi (Jnr), W, Samuel, N, Sanduku, DK, Sani, Chaibou M, Sanyang, LN, Sarah, HN, Sarkin-Pawa, A, Sathiram, R, Saurombe, T, Schutte, H, Sebei, MP, Sedekounou, MD, Segooa, MP, Semenya, EM, Semo, BO, Sendagire, CS, Senoga, SA, Senusi, FS, Serdyn, T, Seshibe, MD, Shah, GB, Shamamba, R, Shambare, CS, Shangase, TN, Shanin, SH, Shefren, IE, Sheshe, AA, Shittu, OB, Shkirban, AS, Sholadoye, T, Shubba, A, Sigcu, N, Sihope, SE, Sikazwe, DS, Sikombe, BS, Simaga Abdoul, K, Simo, WAG, Singata, K, Singh, AS, Singh, S, Singh, Usha, Sinoamadi, V, Sipuka, N, Sithole, NLM, Sitima, S, Skinner, David Lee, Skinner, GC, Smith, OI, Smits, CAG, Sofia, MSI, Sogoba, Gaoussou, Sohoub, A, Sookun, SS, Sosinska, O, Souhe, Rosalie, Souley, G, Souleymane, Thiam, Spicer, JM, Spijkerman, Sandra, Steinhaus, H, Steyn, A, Steyn, G, Steyn, HC, Stoltenkamp, Heidi L, Stroyer, S, Swaleh, A, Swayeb, E, Szpytko, AJ, Taiwo, NA, Tarhuni, A, Tarloff, D, Tchaou, Blaise, Tchegnonsi, Charles, Tchoupa, M, Teeka, MO, Thakoor, B, Theunissen, MM, Thomas, BP, Thomas, MB, Thotharam, A, Tobiko, O, Torborg, AM, Tshisekedi, SM, Tshisola, SK, Tshitangano, R, Tshivhula, F, Tshuma, HT, Tumukunde, Janat, Tun, M, Udo, IA, Uhuebor, DI, Umeh, KU, Usenbo, AO, Uwiteyimbabazi, JdD, Van der Merwe, DJ, van der Merwe, FH, van der Walt, JE, van Dyk, Dominique, Van Dyk, JG, van Niekerk, JJS, van Wyk, S, van Zyl, HA, Veerasamy, B, Venter, PJ, Vermeulen, AJ, Villarreal, R, Visser, J, Visser, L, Voigt, M, von Rahden, Richard P, Wafa, A, Wafula, A, Wambugu, PK, Waryoba, P, Waweru, EN, Weideman, M, Wise, Robert D, Wynne, EE, Yahya, AI, Yahya, AA, Yahya, R, Yakubu, Y, Yanga, JJ, Yangazov, YM, Yousef, O, Yousef, G, Youssouf, Coulibaly, Yunus, AA, Yusuf, AS, Zeiton, AZ, Zentuti, HZ, Zepharine, Henry, Zerihun, AB, Zhou, S, Zidan, A, Zié, Sanogo Zimogo, Zinyemba, CZ, Zo, A, Zomahoun, Lidwine, Zoobei, NZ, Zoumenou, Eugene, Zubia, NZ, Madzimbamuto, Farai D, Gordon, Christina S, Tumukunde, Janat T, Manach, Yannick Le, Mehyaoui, Ryad M, Zoumeno, Eugene, Ndonga, Andrew K N, Ngumi, Zipporah W W, Patel, Ushmah P, Antwi-Kusi, Akwasi A K, and Fawzy, Maher A
Published: 2018
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4. Monitoring quality of care in hepatocellular carcinoma: A modified Delphi consensus

Author: Maharaj, AD, Lubel, J, Lam, E, Clark, PJ, Duncan, O, George, J, Jeffrey, GP, Lipton, L, Liu, H, McCaughan, G, Neo, EL, Philip, J, Strasser, SI, Stuart, K, Thompson, A, Tibballs, J, Tu, T, Wallace, MC, Wigg, A, Wood, M, Zekry, A ; https://orcid.org/0000-0002-5675-1810, Greenhill, E, Ioannou, LJ, Ahlenstiel, G, Bowers, K, Clarke, SJ, Dev, A, Fink, M, Goodwin, M, Karapetis, CS, Levy, MT, Muller, K, O'Beirne, J, Pryor, D, Seow, J, Shackel, N, Tallis, C, Butler, N, Olynyk, JK, Reed-Cox, K, Zalcberg, JR, Roberts, SK, Maharaj, AD, Lubel, J, Lam, E, Clark, PJ, Duncan, O, George, J, Jeffrey, GP, Lipton, L, Liu, H, McCaughan, G, Neo, EL, Philip, J, Strasser, SI, Stuart, K, Thompson, A, Tibballs, J, Tu, T, Wallace, MC, Wigg, A, Wood, M, Zekry, A ; https://orcid.org/0000-0002-5675-1810, Greenhill, E, Ioannou, LJ, Ahlenstiel, G, Bowers, K, Clarke, SJ, Dev, A, Fink, M, Goodwin, M, Karapetis, CS, Levy, MT, Muller, K, O'Beirne, J, Pryor, D, Seow, J, Shackel, N, Tallis, C, Butler, N, Olynyk, JK, Reed-Cox, K, Zalcberg, JR, and Roberts, SK
Abstract: Although there are several established international guidelines on the management of hepatocellular carcinoma (HCC), there is limited information detailing specific indicators of good quality care. The aim of this study was to develop a core set of quality indicators (QIs) to underpin the management of HCC. We undertook a modified, two-round, Delphi consensus study comprising a working group and experts involved in the management of HCC as well as consumer representatives. QIs were derived from an extensive review of the literature. The role of the participants was to identify the most important and measurable QIs for inclusion in an HCC clinical quality registry. From an initial 94 QIs, 40 were proposed to the participants. Of these, 23 QIs ultimately met the inclusion criteria and were included in the final set. This included (a) nine related to the initial diagnosis and staging, including timing to diagnosis, required baseline clinical and laboratory assessments, prior surveillance for HCC, diagnostic imaging and pathology, tumor staging, and multidisciplinary care; (b) thirteen related to treatment and management, including role of antiviral therapy, timing to treatment, localized ablation and locoregional therapy, surgery, transplantation, systemic therapy, method of response assessment, and supportive care; and (c) one outcome assessment related to surgical mortality. Conclusion: We identified a core set of nationally agreed measurable QIs for the diagnosis, staging, and management of HCC. The adherence to these best practice QIs may lead to system-level improvement in quality of care and, ultimately, improvement in patient outcomes, including survival.
Published: 2022

5. Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

Author: Ruseckaite, R, Maharaj, AD, Dean, J, Krysinska, K, Ackerman, IN, Brennan, AL, Busija, L, Carter, H, Earnest, A, Forrest, CB, Harris, IA, Sansoni, J, Ahern, S, Ruseckaite, R, Maharaj, AD, Dean, J, Krysinska, K, Ackerman, IN, Brennan, AL, Busija, L, Carter, H, Earnest, A, Forrest, CB, Harris, IA, Sansoni, J, and Ahern, S
Abstract: BACKGROUND: Clinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs. METHOD: An online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2. RESULTS: From 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set. CONCLUSION: This is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve hea
Published: 2022

6. Barriers and enablers to the implementation of protocol-based imaging in pancreatic cancer: A qualitative study using the theoretical domains framework

Author: Koay, EJ, Maharaj, AD, Evans, SM, Zalcberg, JR, Ioannou, LJ, Graco, M, Croagh, D, Pilgrim, CHC, Dodson, T, Goldstein, D, Philip, J, Kench, JG, Merrett, ND, Neale, RE, White, K, Evans, P, Leong, T, Green, SE, Koay, EJ, Maharaj, AD, Evans, SM, Zalcberg, JR, Ioannou, LJ, Graco, M, Croagh, D, Pilgrim, CHC, Dodson, T, Goldstein, D, Philip, J, Kench, JG, Merrett, ND, Neale, RE, White, K, Evans, P, Leong, T, and Green, SE
Abstract: BACKGROUND: Accurate pre-operative imaging plays a vital role in patient selection for surgery and in allocating stage-appropriate therapies to patients diagnosed with pancreatic cancer (PC). This study aims to: (1) understand the current diagnosis and staging practices for PC; and (2) explore the factors (barriers and enablers) that influence the use of a pancreatic protocol computed tomography (PPCT) or magnetic resonance imaging (MRI) to confirm diagnosis and/or accurately stage PC. METHODS: Semi-structured interviews were conducted with radiologists, surgeons, gastroenterologists, medical and radiation oncologists from the states of New South Wales (NSW) and Victoria, Australia. Interviews were conducted either in person or via video conferencing. All interviews were recorded, transcribed verbatim, de-identified and data were thematically coded according to the 12 domains explored within the Theoretical Domains Framework (TDF). Common belief statements were generated to compare the variation between participant responses. FINDINGS: In total, 21 clinicians (5 radiologists, 10 surgeons, 2 gastroenterologists, 4 medical and radiation oncologists) were interviewed over a four-month-period. Belief statements relevant to the TDF domains were generated. Across the 11 relevant domains, 20 themes and 30 specific beliefs were identified. All TDF domains, with the exception of social influences were identified by participants as relevant to protocol-based imaging using either a PPCT or MRI, with the domains of knowledge, skills and environmental context and resources being offered by most participants as being relevant in influencing their decisions. CONCLUSIONS: To maximise outcomes and personalise therapy it is imperative that diagnosis and staging investigations using the most appropriate imaging modalities are conducted in a timely, efficient and effective manner. The results provide an understanding of specialists' opinion and behaviour in relation to a PPCT or MRI an
Published: 2020

7. The Upper Gastrointestinal Cancer Registry (UGICR): A clinical quality registry to monitor and improve care in upper gastrointestinal cancers

Author: Maharaj, AD, Holland, JF, Scarborough, RO, Evans, SM, Ioannou, LJ, Brown, W, Croagh, DG, Pilgrim, CHC, Kench, JG, Lipton, LR, Leong, T, McNeil, JJ, Nikfarjam, M, Aly, A, Burton, PR, Cashin, PA, Chu, J, Duong, CP, Evans, P, Goldstein, D ; https://orcid.org/0000-0001-6142-3291, Haydon, A, Hii, MW, Knowles, BPF, Merrett, ND ; https://orcid.org/0000-0002-8370-0293, Michael, M, Neale, RE, Philip, J, Porter, IWT, Smith, M, Spillane, J, Tagkalidis, PP, Zalcberg, JR, Maharaj, AD, Holland, JF, Scarborough, RO, Evans, SM, Ioannou, LJ, Brown, W, Croagh, DG, Pilgrim, CHC, Kench, JG, Lipton, LR, Leong, T, McNeil, JJ, Nikfarjam, M, Aly, A, Burton, PR, Cashin, PA, Chu, J, Duong, CP, Evans, P, Goldstein, D ; https://orcid.org/0000-0001-6142-3291, Haydon, A, Hii, MW, Knowles, BPF, Merrett, ND ; https://orcid.org/0000-0002-8370-0293, Michael, M, Neale, RE, Philip, J, Porter, IWT, Smith, M, Spillane, J, Tagkalidis, PP, and Zalcberg, JR
Abstract: Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. Participants It supports four cancer modules: Pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding
Published: 2019

8. Monitoring quality of care for patients with pancreatic cancer: a modified Delphi consensus

Author: Maharaj, AD, Ioannou, L, Croagh, D, Zalcberg, J, Neale, RE, Goldstein, D ; https://orcid.org/0000-0001-6142-3291, Merrett, N ; https://orcid.org/0000-0002-8370-0293, Kench, JG, White, K, Pilgrim, CHC, Chantrill, L ; https://orcid.org/0000-0002-5790-0208, Cosman, P, Kneebone, A, Lipton, L, Nikfarjam, M, Philip, J, Sandroussi, C, Tagkalidis, P, Chye, R ; https://orcid.org/0000-0003-1506-9572, Haghighi, KS, Samra, J, Evans, SM, Maharaj, AD, Ioannou, L, Croagh, D, Zalcberg, J, Neale, RE, Goldstein, D ; https://orcid.org/0000-0001-6142-3291, Merrett, N ; https://orcid.org/0000-0002-8370-0293, Kench, JG, White, K, Pilgrim, CHC, Chantrill, L ; https://orcid.org/0000-0002-5790-0208, Cosman, P, Kneebone, A, Lipton, L, Nikfarjam, M, Philip, J, Sandroussi, C, Tagkalidis, P, Chye, R ; https://orcid.org/0000-0003-1506-9572, Haghighi, KS, Samra, J, and Evans, SM
Abstract: Background: Best practise care optimises survival and quality of life in patients with pancreatic cancer (PC), but there is evidence of variability in management and suboptimal care for some patients. Monitoring practise is necessary to underpin improvement initiatives. We aimed to develop a core set of quality indicators that measure quality of care across the disease trajectory. Methods: A modified, three-round Delphi survey was performed among experts with wide experience in PC care across three states in Australia. A total of 107 potential quality indicators were identified from the literature and divided into five areas: diagnosis and staging, surgery, other treatment, patient management and outcomes. A further six indicators were added by the panel, increasing potential quality indicators to 113. Rated on a scale of 1–9, indicators with high median importance and feasibility (score 7–9) and low disagreement (<1) were considered in the candidate set. Results: From 113 potential quality indicators, 34 indicators met the inclusion criteria and 27 (7 diagnosis and staging, 5 surgical, 4 other treatment, 5 patient management, 6 outcome) were included in the final set. Conclusions: The developed indicator set can be applied as a tool for internal quality improvement, comparative quality reporting, public reporting and research in PC care.
Published: 2019

9. Developing a Preliminary Conceptual Framework for Guidelines on Inclusion of Patient Reported-Outcome Measures (PROMs) in Clinical Quality Registries.

Author: Ruseckaite, R, Maharaj, AD, Krysinska, K, Dean, J, Ahern, S, Ruseckaite, R, Maharaj, AD, Krysinska, K, Dean, J, and Ahern, S
Abstract: PURPOSE: Patient-centred and value-based health-care organisations are increasingly recognising the importance of the patient perspective in the measurement and evaluation of health outcomes. This has been primarily implemented using patient-reported outcome measures (PROMs). Clinical quality registries (CQRs) are specifically designed to improve direct clinical care, benchmark health-care provision and inform health service planning and policy. Despite CQRs having incorporated the patient perspective to support the evaluation of health-care provision, no evidence-based guidelines for inclusion of PROMs in CQRs exist. This has led to substantial heterogeneity in capturing and reporting PROMs within this setting. This publication is the first in a series describing the development of evidence-informed guidelines for PROMs inclusion within CQRs in Australia. METHODS: This study consisted of three components: 1) a literature review of existing evidence of guidelines, enablers, barriers, and lessons learnt of PROMs use within the CQRs setting; 2) a survey of Australian CQRs to determine current practices for PROMs use and reporting; and 3) development of a preliminary conceptual framework for PROMs inclusion in CQRs. RESULTS: Content analysis of the literature review and survey of 66 Australian registries elicited eight categories for the conceptual framework. The framework covers eight components: rationale, setting, ethics, selection of PROMs, administration, data management, statistical methods, feedback, and reporting. CONCLUSION: We developed a preliminary conceptual framework, which classified findings, from both the literature and the survey, into broad categories ranging from initial development to outcome dissemination providing the structure for development of guidelines in the next phase of this project, engaging national and international leaders in health-related quality of life research, clinicians, researchers, patient advocates and consumers.
Published: 2019

10. Monitoring quality of care for patients with pancreatic cancer: a modified Delphi consensus.

Author: Maharaj AD, Ioannou L, Croagh D, Zalcberg J, Neale RE, Goldstein D, Merrett N, Kench JG, White K, Pilgrim CHC, Chantrill L, Cosman P, Kneebone A, Lipton L, Nikfarjam M, Philip J, Sandroussi C, Tagkalidis P, Chye R, Haghighi KS, Samra J, Evans SM, Maharaj AD, Ioannou L, Croagh D, Zalcberg J, Neale RE, Goldstein D, Merrett N, Kench JG, White K, Pilgrim CHC, Chantrill L, Cosman P, Kneebone A, Lipton L, Nikfarjam M, Philip J, Sandroussi C, Tagkalidis P, Chye R, Haghighi KS, Samra J, and Evans SM
Abstract: BACKGROUND:Best practise care optimises survival and quality of life in patients with pancreatic cancer (PC), but there is evidence of variability in management and suboptimal care for some patients. Monitoring practise is necessary to underpin improvement initiatives. We aimed to develop a core set of quality indicators that measure quality of care across the disease trajectory. METHODS:A modified, three-round Delphi survey was performed among experts with wide experience in PC care across three states in Australia. A total of 107 potential quality indicators were identified from the literature and divided into five areas: diagnosis and staging, surgery, other treatment, patient management and outcomes. A further six indicators were added by the panel, increasing potential quality indicators to 113. Rated on a scale of 1-9, indicators with high median importance and feasibility (score 7-9) and low disagreement (<1) were considered in the candidate set. RESULTS:From 113 potential quality indicators, 34 indicators met the inclusion criteria and 27 (7 diagnosis and staging, 5 surgical, 4 other treatment, 5 patient management, 6 outcome) were included in the final set. CONCLUSIONS:The developed indicator set can be applied as a tool for internal quality improvement, comparative quality reporting, public reporting and research in PC care.
Published: 2019

11. Perioperative patient outcomes in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

Author: Biccard, Bruce M, Madiba, Thandinkosi E, Kluyts, Hyla-Louise, Munlemvo, Dolly M, Madzimbamuto, Farai D, Basenero, Apollo, Gordon, Christina S, Youssouf, Coulibaly, Rakotoarison, Sylvia R, Gobin, Veekash, Samateh, Ahmadou L, Sani, Chaibou M, Omigbodun, Akinyinka O, Amanor-Boadu, Simbo D, Tumukunde, Janat T, Esterhuizen, Tonya M, Manach, Yannick Le, Forget, Patrice, Elkhogia, Abdulaziz M, Mehyaoui, Ryad M, Zoumeno, Eugene, Ndayisaba, Gabriel, Ndasi, Henry, Ndonga, Andrew K N, Ngumi, Zipporah W W, Patel, Ushmah P, Ashebir, Daniel Zemenfes, Antwi-Kusi, Akwasi A K, Mbwele, Bernard, Sama, Hamza Doles, Elfiky, Mahmoud, Fawzy, Maher A, Pearse, Rupert M, Abadagan, Hippolyte, Abbas, N, Abdelatif, A Ibrahim, Abdoulaye, Traoré, Abd-rouf, A, Abduljalil, A, Abdulrahman, A, Abdurazig, S, Abokris, A, Abozaid, W, Abugassa, SOA, Abuhdema, F, Abujanah, SA, Abusamra, R, Abushnaf, A, Abusnina, SA, Abuzalout, TS, Ackermann, HM, Adamu, YB, Addanfour, A, Adeleke, DM, Adigun, TA, Adisa, AO, Adjignon, Sèhivè Valéry, Adu-Aryee, NA, Afolabi, BB, Agaba, AFX, Agaba, PKA, Aghadi, K, Agilla, H, Ahmed, B, Ahmed, El-Z, Ahmed, Al-J, Ahmed, M, Ahossi, Rene, Aji, SA, Akanyun, S, Akhideno, I, Akhter, M, Akinyemi, OA, Akkari, M, Akodjenou, Joseph, AL Samateh, AL, al Shams, ES, Alagbe-Briggs, OT, Alakkari, EA, Alalem, RB, Alashhab, M, Alatise, OI, Alatresh, A, Alayeb Alayeb, MSI, Albakosh, BA, Albert, F, Alberts, ANJD, Aldarrat, AD, Alfari, A, Alfetore, A, Algbali, M, Algddar, A, Algedar, HA, Alghafoud, IA, Alghazali, A, Alhajj, M, Alhendery Alhendery, A, Alhoty, FFH, Ali, A, Ali, YA, Ali, A, Alioune, Beye Seïdina, Alkassem, MA, Alkchr, MA, Alkesa, TS, Alkilani, A, Alkobty Alkobty, F, Allaye, Thomas, Alleesaib, SBM, Alli, A, Allopi, K, Allorto, NL, Almajbery, A, Almesmary, R, Almisslati, SHA, Almoraid, F, Alobeidi, H, Alomami, MA, Alphonsus, Christella S, Alqawi, OA, Alraheem, AA, Alsabri, SA, Alsayed, A, Alsellabi, B, Al-Serksi, M, Alshareef, MSA, Altagazi, AA, Aluvale, JS, Alwahedi, HW, Alzahra, EA, Alzarouk, MA, Al-Zubaidy, K, Amadou, M, Amadou, Maiga, Amanor-Boadu, Simbo D, Amer, Al-A, Amisi, BT, Amuthenu, MA, Anabah, TWA, Anani, Felix, Anderson, PGR, Andriamampionona, AGB, Andrianina, L, Anele, A, Angelin, R, Anjar, N, Antùnez, O, Antwi-Kusi, Akwasi, Anyanwu, LJC, Aribi, AA, Arowolo, OA, Arrey, O, Ashebir, Daniel Zemenfes, Assefa, SB, Assoum, Guy, Athanse, V, Athombo, JS, Atiku, M, Atito-Narh, E, Atomabe, Anatole, Attia, A, Aungraheeta, M, Aurélia, DMA, Ayandipo, OO, Ayebale, AET, Azzaidey, HMZ, Babajee, NB, Badi, HB, Badianga, EK, Baghni, RB, Bahta, MT, Bai, M, Baitchu, Y, Baloyi, AM, Bamuza, KA, Bamuza, MI, Bangure, L, Bankole, OB, Barongo, ML, Barow, MM, Basenero, Apollo, Bashiya, L, Basson, CH, Bechan, Sudha, Belhaj, S, Ben Mansour, MM, Benali, D, Benamour, ASB, Berhe, A, Bertie, JD, Bester, JJA, Bester, M, Bezuidenhout, JD, Bhagwan, K, Bhagwandass, DR, Bhat, KAP, Bhuiyan, MMZU, Biccard, Bruce M, Bigirimana, F, Bikuelo, CJ, Bilby, BE, Bingidimi, SS, Bischof, KE, Bishop, David G, Bitta, C, Bittaye, M, Biyase, Thuli, Blake, CA, Blignaut, E, Blignaut, F, BN Tanjong, BN, Bogoslovskiy, A, Boloko, PM, Boodhun, SKB, Bori, I, Boufas, F, Brand, M, Brouckaert, Nicholas T, Bruwer, JD, Buccimazza, I, Bula Bula, IM, Bulamba, Fred, Businge, BC, Bwambale, YB, Cacala, SRC, Cadersa, MA, Cairns, Chris, Carlos, F, Casey, ME, Castro, AC, Chabayanzara, ND, Chaibou, MS, Chaibva, TNO, Chakafa, NK, Chalo, C, Changfoot, C, Chari, MC, Chelbi, L, Chibanda, JT, Chifamba, HN, Chikh, N, Chikumba, E, Chimberengwa, P, Chirengwa, J, Chitungo, FM, Chiwanga, MC, Chokoe, MM, Chokwe, TM, Chrirangi, B, Christian, M, Church, B, Cisekedi, JC, Clegg-Lamptey, JN, Cloete, Estie, Coltman, Megan, Conradie, W, Constance, N, Coulibaly, Youssouf, Cronje, L, Da Silva, MA, Daddy, H, Dahim, L, Daliri, D, Dambaki, MS, Dasrath, A, Davids, JG, Davies, Gareth L, De Lange, JT, de Wet, JB, Dedekind, B, Degaulle, MA, Dehal, V, Deka, PD, Delinikaytis, S, Desalu, IS, Dewanou, Hubert, Deye, MB Moussa, Dhege, C, Diale, BSG, Dibwe, DF, Diedericks, BJS, Dippenaar, JM, Dippenaar, L, Diyoyo, MP, Djessouho, Edith, Dlamini, SN, Dodiyi-Manuel, A, Dokolwana, BA, Domoyyeri, DP, Drummond, Leanne W, du Plessis, DE, du Plessis, WM, du Preez, LJ, Dube, K, Dube, NZ, Dullab, KD, Duvenhage, R, Echem, RC, Edaigbini, SA, Egote, AK, Ehouni, A, Ekwen, G, Ekwunife, NC, El Hensheri, M, Elfaghi, IE, Elfagieh, MA, Elfallah, S, Elfiky, Mahmoud, Elgelany, S, Elghallal, AM, Elghandouri, MG, Elghazal, ZS, Elghobashy, AM, Elharati, FT, Elkhogia, Abdulaziz M, Elkhwildi, RM, Ellis, S, Elmadani, L, Elmadany, HB, Elmehdawi, H, Elmgadmi, A, Eloi, H, Elrafifi, D, Elsaadi, G, Elsaity, RB, Elshikhy, A, Eltaguri, M, Elwerfelli, A, Elyasir, IE, Elzoway, AZ, Elzufri, AM, Enendu, EO, Enicker, BC, Enwerem, EO, Esayas, R, Eshtiwi, M, Eshwehdi, AA, Esterhuizen, JL, Esterhuizen, Tonya M, Etuk, EB, Eurayet, O, Eyelade, OR, Fanjandrainy, RF, Fanou, Lionelle, Farina, Z, Fawzy, Maher, Feituri, A, Fernandes, NL, Ford, LM, Forget, Patrice, François, T, Freeman, T, Freeman, YBM, Gacii, VM, Gadi, B, Gagara, M, Gakenia, A, Gallou, PD, Gama, GGN, Gamal, MG, Gandy, YG, Ganesh, A, Gangaly, Diallo, Garcia, M, Gatheru, AP, Gaya, SSD, Gbéhadé, Oswald, Gerbel, G, Ghnain, A, Gigabhoy, R, Giles, DG, Girmaye, GT, Gitau, S, Githae, B, Gitta, Said, Gobin, Veekash, Goga, Riaz, Gomati, AAG, Gonzalez, ME, Gopall, J, Gordon, Christina Salmina, Gorelyk, O, Gova, M, Govender, K, Govender, P, Govender, S, Govindasamy, V, Green-Harris, JTK, Greenwood, MB, Grey-Johnson, SV, Grobbelaar, Mariette, Groenewald, MA, Grünewald, KK, Guegni, Ambroise, Guenane, M, Gueye, S, Guezo, Marius, Gunguwo, T, Gweder, MG, Gwila, M, Habimana, L, Hadecon, Rodrigue, Hadia, E, Hamadi, L, Hammouda, M, Hampton, MI, Hanta, R, Hardcastle, Tim C, Hariniaina, JA, Hariparsad, S, Harissou, AH, Harrichandparsad, R, Hasan, SHA, Hashmi, HB, Hayes, MP, Hdud, A, Hebli, SH, Heerah, HMSN, Hersi, S, Hery, AH, Hewitt-Smith, Adam, Hlako, TC, Hodges, SCH, Hodgson, Richard Eric, Hokoma, M, Holder, H, Holford, EB, Horugavye, E, Houston, C, Hove, M, Hugo, D, Human, CM, Hurri, H, Huwidi, O, Ibrahim, AI, Ibrahim, Traoré, Idowu, OK, Igaga, IE, Igenge, John, Ihezie, O, Ikandi, K, Ike, IAR, Ikuku, JJN, Ilbarasi, MN, Ilunga, IBB, Ilunga, JPM, Imbangu, NAV, Imessaoudene, Z, Imposo, DH, Iraya, AM, Isaacs, M, Isiguzo, M, Issoufou, A, Izquirdo, P, Jaber, A, Jaganath, UV, Jallow, CS, Jamabo, S, Jamal, ZS, Janneh, L, Jannetjies, MJ, Jasim, I, Jaworska, Megan AJ, Jay Narain, S, Jermi, K, Jimoh, R, Jithoo, S, Johnson, M, Joomye, S, Judicael, RM, Judicaël, M, Juwid, A, Jwambi, LP, Kabango, R, Kabangu, JK, Kabatoro, DK, Kabongo, AN, Kabongo, K, Kabongo, LT, Kabongo, MD, Kady, N, Kafu, S, Kaggya, M, Kaholongo, BNK, Kairuki, PCK, Kakololo, SI, Kakudji, K, Kalisa, Amina, Kalisa, R, Kalufwelu, MR, Kalume, S, Kamanda, RJ, Kangili, MK, Kanoun, H, Kapesa, Kapp, P, Karanja, JK, Karar, M, Kariuki, K, Kaseke, K, Kashuupulwa, PNK, Kasongo, KJP, Kassa, SK, Kateregga, GK, Kathrada, MIS, Katompwa, PM, Katsukunya, L, Kavuma, KAM, Khalfallah, Khamajeet, A, Khetrish, SB, Kibandwa, Kibochi, W, Kilembe, AM, Kintu, AK, Kipng'etich, B, Kiprop, B, Kissoon, VMK, Kisten, Theroshnie K, Kiwanuka, JK, Kluyts, Hyla-Louise, Knox, MEK, Koledale, AK, Koller, VL, Kolotsi, MA, Kongolo, M, Konwuoh, ND, Koperski, WJ, Koraz, MYK, Kornilov, AA, Koto, M Zach, Kransingh, Samantha, Krick, D, Kruger, S, Kruse, C, Kuhn, W, Kuhn, WP, Kukembila, AM, Kule, KL, Kumar, M, Kusel, Belinda S, Kusweje, VK, Kuteesa, KJ, Kutor, YY, Labib, MA, Laksari, M, Lanos, F, Lawal, TA, Le Manach, Yannick, Lee, C, Lekoloane, RM, Lelo, SN, Lerutla, B, Lerutla, MT, Levin, AI, Likongo, TB, Limbajee, ML, Linyama, DM, Lionnet, C, Liwani, MM, Loots, E, Lopez, A Garrido, Lubamba, CLC, Lumbala, KF, Lumbamba, AJM, Lumona, John, Lushima, RF, Luthuli, L, Luweesi, HL, Lyimo, TSK, Maakamedi, HM, Mabaso, BM, Mabina, M, Maboya, ME, Macharia, I, Macheka, AM, Machowski, AZ, Madiba, Thandinkosi E, Madsen, ASM, Madzimbamuto, Farai, Madzivhe, LJ, Mafafo, SC, Maghrabi, M, Mahamane, Diango Djibo, Maharaj, A, Maharaj, A, Maharaj, AD, Mahmud, MR, Mahoko, M, Mahomedy, NA, Mahomva, O, Mahureva, TM, Maila, RK, Maimane, DM, Maimbo, M, Maina, SN, Maiwald, Dela A, Maiyalagan, MD, Majola, N, Makgofa, N, Makhanya, V, Makhaye, WP, Makhlouf, NM, Makhoba, S, Makopa, EK, Makori, O, Makupe, Alex M, Makwela, MA, Malefo, ME, Malongwe, SM, Maluleke, DM, Maluleke, MR, Mamadou, K Touré, Mamaleka, MP, Mampangula, Y, Mamy, RM, Mananjara, MNR, Mandarry, MTM, Mangoo, DM, Manirimbere, C, Manneh, A, Mansour, A, Mansour, I, Manvinder, M, Manyere, DV, Manzini, VT, Manzombi, JK, Mapanda, PM, Marais, LC, Maranga, O, Maritz, JPB, Mariwa, FK, Masela, RS, Mashamba, MM, Mashava, Doreen M, Mashile, MV, Mashoko, E, Masia, OR, Masipa, JN, Masiyambiri, ATM, Matenchi, MW, Mathangani, W, Mathe, RC, Matola, Christopher Y, Matondo, PM, Matos-Puig, R, Matoug, FFH, Matubatuba, JT, Mavesere, HP, Mavhungu, R, Maweni, S, Mawire, CJM, Mawisa, T, Mayeza, S, Mbadi, R, Mbayabu, M, Mbewe, N, Mbombo, WD, Mbuyi, T, Mbuyi, WMS, Mbuyisa, MW, Mbwele, Bernard, Mehyaoui, RM, Menkiti, ID, Mesarieki, LVM, Metali, A, Mewanou, Serge, Mgonja, L, Mgoqo, N, Mhatu, S, Mhlari, TM, Miima, S, Milod, IM, Minani, P, Mitema, F, Mlotshwa, A, Mmasi, JE, Mniki, T, Mofikoya, BO, Mogale, JO, Mohamed, A, Mohamed, A, Mohamed, A, Mohamed, S, Mohamed, S, Mohamed, TS, Mohamed, A, Mohamed, A, Mohamed, AM, Mohamed, P, Mohammed, I, Mohammed, FAM, Mohammed, M, Mohammed, NM, Mohlala, MP, Mokretar, R, Molokoane, FM, Mongwe, KN, Montenegro, L, Montwedi, OD, Moodie, QK, Moopanar, M, Morapedi, M, Morulana, TG, Moses, VL, Mossy, P, Mostafa, H, Motilall, SR, Motloutsi, SP, Moussa, Kanté, Moutari, M, Moyo, OM, Mphephu, PE, Mrara, Busi, Msadabwe, C, Mtongwe, VM, Mubeya, FK, Muchiri, K, Mugambi, J, Muguti, GIM, Muhammad, AB, Mukama, IF, Mukenga, MM, Mukinda, FK, Mukuna, PM, Mungherera, ARW, Munlemvo, Dolly M, Munyaradzi, TW, Munyika, AA, Muriithi, JM, Muroonga, MP, 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Abstract: There is a need to increase access to surgical treatments in African countries, but perioperative complications represent a major global health-care burden. There are few studies describing surgical outcomes in Africa.
Published: 2018
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12. Identifying Existing Guidelines, Frameworks, Checklists, and Recommendations for Implementing Patient-Reported Outcome Measures: Protocol for a Scoping Review.

Author: Jayasinghe RT, Ahern S, Maharaj AD, Romero L, and Ruseckaite R
Subjects: Humans, Research Design standards, Guidelines as Topic, Scoping Reviews As Topic, Checklist, Patient Reported Outcome Measures
Abstract: Background: Implementing patient-reported outcome measures (PROMs) to measure and evaluate health outcomes is increasing worldwide. Along with this emerging trend, it is important to identify which guidelines, frameworks, checklists, and recommendations exist, and if and how they have been used in implementing PROMs, especially in clinical quality registries (CQRs)., Objective: This review aims to identify existing publications, as well as publications that discuss the application of actual guidelines, frameworks, checklists, and recommendations on PROMs' implementation for various purposes such as clinical trials, clinical practice, and CQRs. In addition, the identified publications will be used to guide the development of a new guideline for PROMs' implementation in CQRs, which is the aim of the broader project., Methods: A literature search of the databases MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials will be conducted since the inception of the databases, in addition to using Google Scholar and gray literature to identify literature for the scoping review. Predefined inclusion and exclusion criteria will be used for all phases of screening. Existing publications of guidelines, frameworks, checklists, recommendations, and publications discussing the application of those methodologies for implementing PROMs in clinical trials, clinical practice, and CQRs will be included in the final review. Data relating to bibliographic information, aim, the purpose of PROMs use (clinical trial, practice, or registries), name of guideline, framework, checklist and recommendations, the rationale for development, and their purpose and implications will be extracted. Additionally, for publications of actual methodologies, aspects or domains of PROMs' implementation will be extracted. A narrative synthesis of included publications will be conducted., Results: The electronic database searches were completed in March 2024. Title and abstract screening, full-text screening, and data extraction will be completed in May 2024. The review is expected to be completed by the end of August 2024., Conclusions: The findings of this scoping review will provide evidence on any existing methodologies and tools for PROMs' implementation in clinical trials, clinical practice, and CQRs. It is anticipated that the publications will help us guide the development of a new guideline for PROMs' implementation in CQRs., Trial Registration: PROSPERO CRD42022366085; https://tinyurl.com/bdesk98x., International Registered Report Identifier (irrid): DERR1-10.2196/52572., (©Randi Thisakya Jayasinghe, Susannah Ahern, Ashika D Maharaj, Lorena Romero, Rasa Ruseckaite. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 21.05.2024.)
Published: 2024
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13. The use of patient reported outcome measures in oncology clinical practice across Australia and New Zealand.

Author: Maharaj AD, Roberts N, Jefford M, Ng J, Rutherford C, and Koczwara B
Subjects: Adult, Humans, New Zealand epidemiology, Australia epidemiology, New South Wales, Medical Oncology, Patient Reported Outcome Measures
Abstract: Background: While there is increasing evidence on the benefits of PROMs in cancer care, the extent of routine collection and use of PROMs in clinical cancer practice across Australia and New Zealand (ANZ) is unknown. This study examined the prevalence and characteristics of PROMs use in routine clinical cancer care in ANZ., Methods: An online survey was designed and disseminated via professional societies and organisations using a snowball sampling approach to clinical and health administration professionals managing cancer care in ANZ. A poster advertising the study was also circulated on professional social media networks via LinkedIn and Twitter inviting health professionals from ANZ to participate if they were using or intending to use PROMs in clinical cancer practice. Responders opted into the survey via the survey link., Results: From 132 survey views, 91(response rate, 69%) respondents from 56 clinical practices across ANZ agreed to participate in the survey, and of these 55 (n = 55/91, 60%) respondents reported collecting PROMs within their clinical practice. The majority of the respondents were from the State of New South Wales in Australia (n = 21/55, 38%), hospital (n = 35/55, 64%), and a public setting (n = 46/55, 83%). PROMs were collected in all cancer types (n = 21/36, 58%), in all stages of the disease (n = 31/36, 86%), in an adult population (n = 33/36, 92%), applied in English (n = 33/36, 92%), and used to facilitate communication with other reasons (27/36, 75%). A geospatial map analysis provided insights into the variation in PROMs uptake between the two countries and in certain jurisdictions within Australia. This study also highlights the limited resources for PROMs implementation, and a lack of systematic priority driven approach., Conclusion: PROM use across Australia and New Zealand seems variable and occurring predominantly in larger metropolitan centres with limited standardisation of approach and implementation. A greater focus on equitable adoption of PROMs in diverse cancer care settings is urgently needed., (© 2023. The Author(s).)
Published: 2024
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14. Monitoring quality of care in hepatocellular carcinoma: A modified Delphi consensus.

Author: Maharaj AD, Lubel J, Lam E, Clark PJ, Duncan O, George J, Jeffrey GP, Lipton L, Liu H, McCaughan G, Neo EL, Philip J, Strasser SI, Stuart K, Thompson A, Tibballs J, Tu T, Wallace MC, Wigg A, Wood M, Zekry A, Greenhill E, Ioannou LJ, Ahlenstiel G, Bowers K, Clarke SJ, Dev A, Fink M, Goodwin M, Karapetis CS, Levy MT, Muller K, O'Beirne J, Pryor D, Seow J, Shackel N, Tallis C, Butler N, Olynyk JK, Reed-Cox K, Zalcberg JR, and Roberts SK
Subjects: Humans, Delphi Technique, Quality Indicators, Health Care, Antiviral Agents, Carcinoma, Hepatocellular diagnosis, Liver Neoplasms diagnosis
Abstract: Although there are several established international guidelines on the management of hepatocellular carcinoma (HCC), there is limited information detailing specific indicators of good quality care. The aim of this study was to develop a core set of quality indicators (QIs) to underpin the management of HCC. We undertook a modified, two-round, Delphi consensus study comprising a working group and experts involved in the management of HCC as well as consumer representatives. QIs were derived from an extensive review of the literature. The role of the participants was to identify the most important and measurable QIs for inclusion in an HCC clinical quality registry. From an initial 94 QIs, 40 were proposed to the participants. Of these, 23 QIs ultimately met the inclusion criteria and were included in the final set. This included (a) nine related to the initial diagnosis and staging, including timing to diagnosis, required baseline clinical and laboratory assessments, prior surveillance for HCC, diagnostic imaging and pathology, tumor staging, and multidisciplinary care; (b) thirteen related to treatment and management, including role of antiviral therapy, timing to treatment, localized ablation and locoregional therapy, surgery, transplantation, systemic therapy, method of response assessment, and supportive care; and (c) one outcome assessment related to surgical mortality. Conclusion: We identified a core set of nationally agreed measurable QIs for the diagnosis, staging, and management of HCC. The adherence to these best practice QIs may lead to system-level improvement in quality of care and, ultimately, improvement in patient outcomes, including survival., (© 2022 The Authors. Hepatology Communications published by Wiley Periodicals LLC on behalf of American Association for the Study of Liver Diseases.)
Published: 2022
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15. Prognostic models to predict survival in patients with pancreatic cancer: a systematic review.

Author: Ioannou LJ, Maharaj AD, Zalcberg JR, Loughnan JT, Croagh DG, Pilgrim CH, Goldstein D, Kench JG, Merrett ND, Earnest A, Burmeister EA, White K, Neale RE, and Evans SM
Subjects: Humans, Prognosis, Retrospective Studies, Carcinoma, Pancreatic Ductal surgery, Pancreatic Neoplasms surgery
Abstract: Background: Pancreatic ductal adenocarcinoma (PDAC) has poor survival. Current treatments offer little likelihood of cure or long-term survival. This systematic review evaluates prognostic models predicting overall survival in patients diagnosed with PDAC., Methods: We conducted a comprehensive search of eight electronic databases from their date of inception through to December 2019. Studies that published models predicting survival in patients with PDAC were identified., Results: 3297 studies were identified; 187 full-text articles were retrieved and 54 studies of 49 unique prognostic models were included. Of these, 28 (57.1%) were conducted in patients with advanced disease, 17 (34.7%) with resectable disease, and four (8.2%) in all patients. 34 (69.4%) models were validated, and 35 (71.4%) reported model discrimination, with only five models reporting values >0.70 in both derivation and validation cohorts. Many (n = 27) had a moderate to high risk of bias and most (n = 33) were developed using retrospective data. No variables were unanimously found to be predictive of survival when included in more than one study., Conclusion: Most prognostic models were developed using retrospective data and performed poorly. Future research should validate instruments performing well locally in international cohorts and investigate other potential predictors of survival., (Copyright © 2022 International Hepato-Pancreato-Biliary Association Inc. All rights reserved.)
Published: 2022
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16. The association between quality care and outcomes for a real-world population of Australian patients diagnosed with pancreatic cancer.

Author: Maharaj AD, Evans SM, Ioannou LJ, Croagh D, Earnest A, Holland JF, Pilgrim CHC, Neale RE, Goldstein D, Kench JG, Merrett ND, White K, Burmeister EA, Evans PM, Hayes TM, Houli N, Knowles B, Leong T, Nikfarjam M, Philip J, Quinn M, Shapiro J, Smith MD, Spillane JB, Wong R, and Zalcberg JR
Subjects: Australia epidemiology, Chemotherapy, Adjuvant, Humans, Proportional Hazards Models, Pancreatic Neoplasms
Abstract: Background: This study: (i) assessed compliance with a consensus set of quality indicators (QIs) in pancreatic cancer (PC); and (ii) evaluated the association between compliance with these QIs and survival., Methods: Four years of data were collected for patients diagnosed with PC. Cox proportional hazards models were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs). A multivariable analysis tested the relationship between significant patient and hospital characteristics, patient cluster effects within hospitals and survival., Results: 1061 patients were eligible for this study. Significant association with improved survival were: (i) in the potentially resectable group having adjuvant chemotherapy administered following surgery or a reason documented (HR, 0.29; 95 CI, 0.19-0.46); (ii) in the locally advanced group included having chemotherapy ± chemoradiation, or a reason documented for not undergoing treatment (HR, 0.38; 95 CI, 0.25-0.58); and (iii) in the metastatic disease group included having documented performance status at presentation (HR, 0.65; 95 CI, 0.47-0.89), being seen by an oncologist in the absence of treatment (HR, 0.48; 95 CI, 0.31-0.77), and disease management discussed at a multidisciplinary team meeting (HR, 0.79; 95 CI, 0.64-0.96)., Conclusion: Capture of a concise data set has enabled quality of care to be assessed., (Copyright © 2021 International Hepato-Pancreato-Biliary Association Inc. Published by Elsevier Ltd. All rights reserved.)
Published: 2022
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17. Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

Author: Ruseckaite R, Maharaj AD, Dean J, Krysinska K, Ackerman IN, Brennan AL, Busija L, Carter H, Earnest A, Forrest CB, Harris IA, Sansoni J, and Ahern S
Subjects: Australia, Delphi Technique, Humans, Registries, Surveys and Questionnaires, Patient Reported Outcome Measures, Quality of Life
Abstract: Background: Clinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs., Method: An online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2., Results: From 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set., Conclusion: This is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve health outcomes and healthcare value., (© 2022. The Author(s).)
Published: 2022
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18. Barriers and enablers to the implementation of multidisciplinary team meetings: a qualitative study using the theoretical domains framework.

Author: Maharaj AD, Evans SM, Zalcberg JR, Ioannou LJ, Graco M, Croagh D, Pilgrim CHC, Dodson T, Goldstein D, Philip J, Kench JG, Merrett ND, Neale RE, White K, Evans P, Leong T, and Green SE
Subjects: Humans, Patient Care Team, Qualitative Research, Victoria, Motivation, Professional Role
Abstract: Background: Evidence-based clinical practice guidelines recommend discussion by a multidisciplinary team (MDT) to review and plan the management of patients for a variety of cancers. However, not all patients diagnosed with cancer are presented at an MDT., Objectives: (1) To identify the factors (barriers and enablers) influencing presentation of all patients to, and the perceived value of, MDT meetings in the management of patients with pancreatic cancer and; (2) to identify potential interventions that could overcome modifiable barriers and enhance enablers using the theoretical domains framework (TDF)., Methods: Semistructured interviews were conducted with radiologists, surgeons, medical and radiation oncologists, gastroenterologists, palliative care specialists and nurse specialists based in New South Wales and Victoria, Australia. Interviews were conducted either in person or via videoconferencing. All interviews were recorded, transcribed verbatim, deidentified and data were thematically coded according to the 12 domains explored within the TDF. Common belief statements were generated to compare the variation between participant responses., Results: In total, 29 specialists were interviewed over a 4-month period. Twenty-two themes and 40 belief statements relevant to all the TDF domains were generated. Key enablers influencing MDT practices included a strong organisational focus ( social/professional role and identity ), beliefs about the benefits of an MDT discussion ( beliefs about consequences ), the use of technology, for example, videoconferencing ( environmental context and resources ), the motivation to provide good quality care ( motivation and goals ) and collegiality ( social influences ). Barriers included: absence of palliative care representation ( skills ), the number of MDT meetings ( environmental context and resources ), the cumulative cost of staff time ( beliefs about consequences ), the lack of capacity to discuss all patients within the allotted time ( beliefs about capabilities ) and reduced confidence to participate in discussions ( social influences )., Conclusions: The internal and external organisational structures surrounding MDT meetings ideally need to be strengthened with the development of agreed evidence-based protocols and referral pathways, a focus on resource allocation and capabilities, and a culture that fosters widespread collaboration for all stages of pancreatic cancer., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)
Published: 2021
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19. Barriers and enablers to the implementation of protocol-based imaging in pancreatic cancer: A qualitative study using the theoretical domains framework.

Author: Maharaj AD, Evans SM, Zalcberg JR, Ioannou LJ, Graco M, Croagh D, Pilgrim CHC, Dodson T, Goldstein D, Philip J, Kench JG, Merrett ND, Neale RE, White K, Evans P, Leong T, and Green SE
Subjects: Female, Humans, Male, Neoplasm Staging, Qualitative Research, Magnetic Resonance Imaging, Pancreatic Neoplasms diagnostic imaging, Precision Medicine, Tomography, X-Ray Computed
Abstract: Background: Accurate pre-operative imaging plays a vital role in patient selection for surgery and in allocating stage-appropriate therapies to patients diagnosed with pancreatic cancer (PC). This study aims to: (1) understand the current diagnosis and staging practices for PC; and (2) explore the factors (barriers and enablers) that influence the use of a pancreatic protocol computed tomography (PPCT) or magnetic resonance imaging (MRI) to confirm diagnosis and/or accurately stage PC., Methods: Semi-structured interviews were conducted with radiologists, surgeons, gastroenterologists, medical and radiation oncologists from the states of New South Wales (NSW) and Victoria, Australia. Interviews were conducted either in person or via video conferencing. All interviews were recorded, transcribed verbatim, de-identified and data were thematically coded according to the 12 domains explored within the Theoretical Domains Framework (TDF). Common belief statements were generated to compare the variation between participant responses., Findings: In total, 21 clinicians (5 radiologists, 10 surgeons, 2 gastroenterologists, 4 medical and radiation oncologists) were interviewed over a four-month-period. Belief statements relevant to the TDF domains were generated. Across the 11 relevant domains, 20 themes and 30 specific beliefs were identified. All TDF domains, with the exception of social influences were identified by participants as relevant to protocol-based imaging using either a PPCT or MRI, with the domains of knowledge, skills and environmental context and resources being offered by most participants as being relevant in influencing their decisions., Conclusions: To maximise outcomes and personalise therapy it is imperative that diagnosis and staging investigations using the most appropriate imaging modalities are conducted in a timely, efficient and effective manner. The results provide an understanding of specialists' opinion and behaviour in relation to a PPCT or MRI and should be used to inform the design of future interventions to improve compliance with this practice., Competing Interests: The authors declare no conflict of interest.
Published: 2020
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20. Patient-reported outcome measures (PROMs) in pancreatic cancer: a systematic review.

Author: Maharaj AD, Samoborec S, Evans SM, Zalcberg J, Neale RE, Goldstein D, Merrett N, White K, Croagh D, Pilgrim CHC, Evans P, Knowles B, Leong T, Philip J, Smith M, and Ioannou L
Subjects: Humans, Pancreatic Neoplasms psychology, Predictive Value of Tests, Psychometrics, Reproducibility of Results, Pancreatic Neoplasms therapy, Patient Reported Outcome Measures
Abstract: Background: The aim of this systematic review is to examine patient-reported outcome measures (PROMs), their attributes and application in patients with pancreatic cancer (PC)., Method: A systematic literature search was undertaken of articles published to June 2018 to identify PROMs applied in primary studies in PC. Characteristics of the included studies and PROMs were described with identified scales grouped into five domains. The psychometric properties of the identified PROMs were further assessed for reliability and validity among patients with PC., Results: From 1688 studies screened, 170 were included. Almost half (48%) were conducted in patients with unresectable PC; the majority of these (68%) were evaluated in randomized controlled trials. Median questionnaire completion rates fell below 10% of the original cohort within 12 months in patients with unresectable PC compared to 75% in patients with resectable PC. Seventy PROMs were identified, 32 measuring unidimensional parameters (e.g. pain) and 35 measuring multidimensional (e.g. quality of life) constructs. Only five (7%) PROMs were disease-specific and 13 (19%) were validated in patients with PC. Fifty scales were grouped into 19 physical, 9 psychological, 6 psychiatric, 9 social and 7 other domains., Conclusion: Three multidimensional PROMs, the: (i) FACT-HEP in unresectable PC; (ii) QLQ-PAN26 (in conjunction with its core QLQ-C30 PROM) in resectable PC; and (iii) MDASI-GI are recommended as instruments to capture quality of life in patients with PC. Summarised scales and psychometric evaluation provide a framework to choose PROMs for scales not captured by the recommended PROMs., (Copyright © 2019 International Hepato-Pancreato-Biliary Association Inc. Published by Elsevier Ltd. All rights reserved.)
Published: 2020
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21. The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers.

Author: Maharaj AD, Holland JF, Scarborough RO, Evans SM, Ioannou LJ, Brown W, Croagh DG, Pilgrim CHC, Kench JG, Lipton LR, Leong T, McNeil JJ, Nikfarjam M, Aly A, Burton PR, Cashin PA, Chu J, Duong CP, Evans P, Goldstein D, Haydon A, Hii MW, Knowles BPF, Merrett ND, Michael M, Neale RE, Philip J, Porter IWT, Smith M, Spillane J, Tagkalidis PP, and Zalcberg JR
Subjects: Aged, Aged, 80 and over, Australia epidemiology, Biliary Tract Neoplasms epidemiology, Biliary Tract Neoplasms therapy, Esophageal Neoplasms epidemiology, Esophageal Neoplasms therapy, Female, Gastrointestinal Neoplasms epidemiology, Humans, Liver Neoplasms epidemiology, Liver Neoplasms therapy, Male, Middle Aged, Pancreatic Neoplasms epidemiology, Pancreatic Neoplasms therapy, Quality Improvement, Stomach Neoplasms epidemiology, Stomach Neoplasms therapy, Gastrointestinal Neoplasms therapy, Registries
Abstract: Purpose: The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia., Participants: It supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation., Findings to Date: The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile., Future Plans: The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Published: 2019
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21 results on '"Maharaj, AD"'

1. Maternal and neonatal outcomes after caesarean delivery in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

2. Developing a Preliminary Conceptual Framework for Guidelines on Inclusion of Patient Reported-Outcome Measures (PROMs) in Clinical Quality Registries

3. Perioperative patient outcomes in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

4. Monitoring quality of care in hepatocellular carcinoma: A modified Delphi consensus

5. Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

6. Barriers and enablers to the implementation of protocol-based imaging in pancreatic cancer: A qualitative study using the theoretical domains framework

7. The Upper Gastrointestinal Cancer Registry (UGICR): A clinical quality registry to monitor and improve care in upper gastrointestinal cancers

8. Monitoring quality of care for patients with pancreatic cancer: a modified Delphi consensus

9. Developing a Preliminary Conceptual Framework for Guidelines on Inclusion of Patient Reported-Outcome Measures (PROMs) in Clinical Quality Registries.

10. Monitoring quality of care for patients with pancreatic cancer: a modified Delphi consensus.

11. Perioperative patient outcomes in the African Surgical Outcomes Study: a 7-day prospective observational cohort study

12. Identifying Existing Guidelines, Frameworks, Checklists, and Recommendations for Implementing Patient-Reported Outcome Measures: Protocol for a Scoping Review.

13. The use of patient reported outcome measures in oncology clinical practice across Australia and New Zealand.

14. Monitoring quality of care in hepatocellular carcinoma: A modified Delphi consensus.

15. Prognostic models to predict survival in patients with pancreatic cancer: a systematic review.

16. The association between quality care and outcomes for a real-world population of Australian patients diagnosed with pancreatic cancer.

17. Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

18. Barriers and enablers to the implementation of multidisciplinary team meetings: a qualitative study using the theoretical domains framework.

19. Barriers and enablers to the implementation of protocol-based imaging in pancreatic cancer: A qualitative study using the theoretical domains framework.

20. Patient-reported outcome measures (PROMs) in pancreatic cancer: a systematic review.

21. The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers.

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