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52. Experiences of colorectal cancer survivors in returning to primary coordinated healthcare following treatment

Author

Rutherford, Claudia, Kim, Bora, White, Kate, Ostroff, Cheri, Acret, Louise, Tracy, Marguerite, Mahadeva, Janani, Willcock, Simon M., Rutherford, Claudia, Kim, Bora, White, Kate, Ostroff, Cheri, Acret, Louise, Tracy, Marguerite, Mahadeva, Janani, and Willcock, Simon M

Subjects
primary health care, primary care, Health Policy, patient experiences, qualitative study, Public Health, Environmental and Occupational Health, colorectal cancer, survivorship care, continuity of patient care, health transition, consumer participation
Abstract

Background: Advances in screening and treatments for colorectal cancer (CRC) have improved survival rates, leading to a large population of CRC survivors. Treatment for CRC can cause long-term side-effects and functioning impairments. General practitioners (GPs) have a role in meeting survivorship care needs of this group of survivors. We explored CRC survivors’ experiences of managing the consequences of treatment in the community and their perspective on the GP’s role in post-treatment care. Methods: This was a qualitative study using an interpretive descriptive approach. Adult participants no longer actively receiving treatment for CRC were asked about: side-effects post-treatment; experiences of GP-coordinated care; perceived care gaps; and perceived GP role in post-treatment care. Thematic analysis was used for data analysis. Results: A total of 19 interviews were conducted. Participants experienced side-effects that significantly impacted their lives; many they felt ill-prepared for. Disappointment and frustration was expressed with the healthcare system when expectations about preparation for post-treatment effects were not met. The GP was considered vital in survivorship care. Participants’ unmet needs led to self-management, self-directed information seeking and sourcing referral options, leaving them feeling like their own care coordinator. Disparities in post-treatment care between metropolitan and rural participants were observed. Conclusion: There is a need for improved discharge preparation and information for GPs, and earlier recognition of concerns following CRC treatment to ensure timely management and access to services in the community, supported by system-level initiatives and appropriate interventions. Refereed/Peer-reviewed

Published
2023

55. Single-arm studies involving patient-reported outcome data in oncology: a literature review on current practice

Author

Liu, Limin, primary, Choi, Jungyeon, additional, Musoro, Jammbe Z, additional, Sauerbrei, Willi, additional, Amdal, Cecilie Delphin, additional, Alanya, Ahu, additional, Barbachano, Yolanda, additional, Cappelleri, Joseph C, additional, Falk, Ragnhild Sørum, additional, Fiero, Mallorie H, additional, Regnault, Antoine, additional, Reijneveld, Jaap C, additional, Sandin, Rickard, additional, Thomassen, Doranne, additional, Roychoudhury, Satrajit, additional, Goetghebeur, Els, additional, le Cessie, Saskia, additional, Aiyegbusi, Olalekan Lee, additional, Basch, Ethan, additional, Calvert, Melanie, additional, Campbell, Alicyn, additional, Cappelleri, Joseph, additional, Cruz Rivera, Samantha, additional, Delphin Amdal, Cecilie, additional, Fiero, Mallorie, additional, Kamalakar, Rajesh, additional, Keating, Karen, additional, Kluetz, Paul, additional, Liu, Limin, additional, Molenberghs, Geert, additional, Musoro, Jammbe, additional, Ness, David, additional, Rantell, Khadija, additional, Reijneveld, Jaap, additional, Rumpold, Gerhard, additional, Russell-Smith, Alexander, additional, Rutherford, Claudia, additional, Sail, Kavita, additional, Sasseville, Maxime, additional, Schiel, Anja, additional, Schlichting, Michael, additional, Soltys, Kathy, additional, Sorum Falk, Ragnhild, additional, Su, Yun, additional, ten Seldam, Silene, additional, and Van Lancker, Kelly, additional

Published
2023
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57. Traducción y adaptación transcultural al español del cuestionario de calidad de vida y úlceras por presión PU-QOL

Author

Vera Salmerón, Eugenio, Mota Romero, Emilio, Domínguez Nogueira, Carmen, Rutherford, Claudia, Tudela Vázquez, María Pilar, Vera Salmerón, Eugenio, Mota Romero, Emilio, Domínguez Nogueira, Carmen, Rutherford, Claudia, and Tudela Vázquez, María Pilar

Abstract

BACKGROUND // Pressure ulcers (PU) are the most prevalent of the dependency-related injuries, affecting the quality of life of the patients who suffer them. However, there are no instruments adapted to the Spanish context to evaluate this quality of life. The use of specific tools in Spanish to evaluate the quality of life perceived by patients with PUs is considered an indispensable element for healthcare decisions. The aim of this paper was to translate and culturally adapt the Pressure Ulcer Quality of Life Questionnaire (PUQOL) into Spanish for the measurement of health-related quality of life in patients with pressure ulcers. METHODS // A translation, back-translation, and pre-test method was used on the target population to obtain an adapted version of the original PU-QOL instrument. The area was Primary Care. The participants were fifteen Primary Care patients. Main steps: 1) Direct translation; 2) Synthesis and concordance of versions by an expert committee; 3) Back translation; 4) Consistency of the back translation with the author from the original questionnaire; and 5) Analysis of comprehensibility through cognitive interviews with a sample of patients. RESULTS // An instrument to measure perceived quality of life in patients with PU was obtained, composed of ten scales and eighty-three items. The scales and items of the original questionnaire were maintained. Conceptual and semantic analysis produced adjustments in wording, clarification and reformulations adapted to the Spanish context. CONCLUSIONS // We present this first phase of translation and cross-cultural adaptation of the PU-QOL questionnaire in Spanish, which could be a useful tool for decision-making on health care in patients with PUs., FUNDAMENTOS // Las úlceras por presión (UPP) son las lesiones más frecuentes de las relacionadas con la dependencia y tienen un gran impacto en la calidad de vida de quienes las sufren. Disponer de herramientas en español específicas para evaluar la calidad de vida percibida por los pacientes con UPP se considera un elemento indispensable para la toma de decisiones sobre los cuidados de salud. El objetivo de este estudio fue traducir al español y adaptar culturalmente el cuestionario Pressure Ulcer Quality of Life Questionnaire (PU-QOL) para la medición de la calidad de vida relacionada con la salud en pacientes con úlceras por presión. MÉTODOS // Se utilizó un método de traducción, retrotraducción y pretest a la población diana para obtener una versión adaptada del instrumento original PU-QOL. El emplazamiento fue la Atención Primaria. Los participantes fueron quince pacientes de Atención Primaria. Mediciones principales: 1) Traducción directa; 2) Síntesis y conciliación de las versiones por un comité de expertos; 3) Traducción inversa; 4) Conciliación de la traducción inversa con la autora del cuestionario original; y 5) Análisis de la comprensibilidad mediante entrevistas cognitivas a una muestra de pacientes. RESULTADOS // Se obtuvo un instrumento de medición de calidad de vida percibida en pacientes con UPP, compuesto por diez escalas y ochenta y tres ítems. Se mantuvieron las escalas e ítems del cuestionario original. El análisis conceptual y semántico produjo ajustes de redacción, clarificación y reformulaciones adaptadas al contexto español. CONCLUSIONES // La disponibilidad de un cuestionario en español de medición de calidad de vida percibida, como es el PU-QOL, del que presentamos esta primera fase de traducción y adaptación transcultural, podrá ser un elemento útil para la toma de decisiones sobre los cuidados en salud en pacientes con UPP.

Published
2023

60. Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-kidney Transplantation Consensus Workshop Report

Author

Ju, Angela, Josephson, Michelle A., Butt, Zeeshan, Jowsey-Gregoire, Sheila, Tan, Jane, Taylor, Quinetta, Fowler, Kevin, Dobbels, Fabienne, Caskey, Fergus, Jha, Vivekanand, Locke, Jayme, Knoll, Greg, Ahn, Curie, Hanson, Camilla S., Sautenet, Benedicte, Manera, Karine, Craig, Jonathan C., Howell, Martin, Rutherford, Claudia, Tong, Allison, Harden, Paul, Hawley, Carmel, Holdaas, Hallvard, Israni, Ajay, Jesse, Michelle, Kane, Brenna, Kanellis, John, Kiberd, Bryce, Kim, Joseph, Larsen, Chris, Leichtman, Alan, Lentine, Krista, Malone, Andrew, Mannon, Roslyn, Oberbauer, Rainer, Patzer, Rachel, Peipert, John Devin, Phan, Hai An, Poggio, Emilio, Reed, Rihannon, Scandling, John, Tang, Ignatius, Watson, Chris, Contrares, Daniel, Contreras, Patricia, Cross, Daley, Juodvalkis, Egle, Koide, Den, Koide, Jinny, Kozarewicz, Adam, Kozarewicz, Laura, Kozarewicz, Richard, Koritala, Andrea, Lisiecki, Elizabeth, Lipuma, Christine, Lyman, Margaret, Mueller, Robert, Mueller, Gloria, Noble, Larry, Nolan, Nancy, Nolan, Stephen, Thomas, Jim, Urbancyzk, Lynda, Zerante, James, and Zerante, Susan

Published
2019
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62. Development and implementation barriers of a new patient‐reported measure: The Radiation therapy‐related Inconvenience Questionnaire (RIQ).

Author

Shunmugasundaram, Chindhu, Sundaresan, Puma, White, Kate, King, Madeleine T, Milross, Chris, Rodd, Lucinda, Fuller, Matthew, and Rutherford, Claudia

Subjects
MEDICAL personnel, TEST validity, COGNITIVE interviewing, SEMI-structured interviews, QUESTIONNAIRES
Abstract

Introduction: Radiation therapy (RT) can benefit approximately 50% of cancer patients and contribute to 40% of all cancer cures, yet its utilisation in cancer is low globally. Several factors contribute to this including perceived inconvenience related to accessing and utilising RT. To quantitatively assess the latter, a new tool – the Radiation therapy‐related Inconvenience Questionnaire (RIQ) – was developed. This study aimed to pre‐test the RIQ and explore barriers and facilitators to implementing it in routine clinical practice and clinical trials. Methods: Semi‐structured cognitive interviews were conducted with patients undertaking RT, recruited via three hospitals to examine content validity, acceptability, and comprehensibility of the RIQ. Interviews identified inconsistencies, relevance, and clarity of items. Semi‐structured interviews with healthcare professionals involved in the delivery of care to individuals undertaking RT explored barriers and facilitators to routine usage. Thematic analysis was used to identify themes. Results: Patients (N = 15) identified problems in content, instructions, layout, length, and response options; consequently, 25 items were revised and eight removed, resulting in a final 29‐item questionnaire. Clinicians identified staff‐ and patient‐specific barriers to implementing RIQ in clinical practice. Perceived facilitators included the following: (a) workplace factors, (b) mode of administration, and (c) imparting knowledge. Conclusion: This study demonstrated acceptability and comprehensibility of the 29‐item RIQ amongst cancer patients undertaking RT and treating clinicians. The next phase will evaluate the RIQ's measurement properties in a larger clinical study. The barriers and facilitators identified can guide future implementation of RIQ in clinical practice and clinical trials. [ABSTRACT FROM AUTHOR]

Published
2023
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63. Patient-Reported Outcome Measures in Chemotherapy-Induced Peripheral Neurotoxicity: Defining Minimal and Clinically Important Changes

Author

Li, Tiffany, primary, Timmins, Hannah C., additional, Trinh, Terry, additional, Mizrahi, David, additional, Harrison, Michelle, additional, Horvath, Lisa G., additional, Grimison, Peter, additional, Friedlander, Michael, additional, Kiernan, Matthew C., additional, King, Madeleine T., additional, Rutherford, Claudia, additional, Goldstein, David, additional, and Park, Susanna B., additional

Published
2023
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70. 132 Treating (or Monitoring?) Low-Risk Ductal Carcinoma in Situ (DCIS): Focus Groups about Women’s Views

Author

Hersch, Jolyn, primary, Nickel, Brooke, additional, Dixon, Ann, additional, Jansen, Jesse, additional, Saunders, Christobel, additional, Houssami, Nehmat, additional, Barratt, Alexandra, additional, Spillane, Andrew, additional, Stuart, Kirsty, additional, Rutherford, Claudia, additional, Robertson, Geraldine, additional, Wylie, Liz, additional, and McCaffery, Kirsten, additional

Published
2022
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71. 135 Treating low-risk ductal carcinoma in situ (DCIS)... or not? Qualitative study of patient perspectives

Author

Hersch, Jolyn, primary, Nickel, Brooke, additional, Dixon, Ann, additional, Houssami, Nehmat, additional, Saunders, Christobel, additional, Jansen, Jesse, additional, Rutherford, Claudia, additional, Barratt, Alexandra, additional, Spillane, Andrew, additional, Wylie, Liz, additional, Stuart, Kirsty, additional, Robertson, Geraldine, additional, and McCaffery, Kirsten, additional

Published
2022
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72. Body Image Scale: Evaluation of the Psychometric Properties in Three Indian Head and Neck Cancer Language Groups

Author

Shunmugasundaram, Chindhu, Chittem, Mahati, Rutherford, Claudia, et al, ., Shunmugasundaram, Chindhu, Chittem, Mahati, Rutherford, Claudia, and et al, .

Abstract

Background: Body image is a subjective concept encompassing a person’s views and emotions about their body. Head and neck cancer (HNC) diagnosis and treatment affects several psychosocial concepts including body image. Large numbers of HNC patients are diagnosed each year in India but there are no suitable measures in regional languages to assess their body image. This study assessed the psychometric properties of the Body Image Scale (BIS), a measure suitable for clinical and research use in HNC populations, translated into Tamil, Telugu and Hindi and compared body image distress between language groups. Methods: Translated versions of BIS were completed by HNC patients recruited from three cancer centers across India one time only. Psychometric evaluation was conducted including factor analysis using principal component analysis and internal consistency reliability using Cronbach’s alpha. Patients completed the EORTC Quality of Life Questionnaire (QLQ) C-30 and EORTC QLQ HN-35 measures to enable exploration of convergent and discriminant validity. ANOVA was used to calculate difference in mean values for body image. Results: Our sample included 621 HNC patients (Tamil = 205, Telugu = 216, Hindi = 200). Factor analysis revealed a one-factor solution and Cronbach’s alpha coefficients ranged between 0.891 and 0.969 indicating good reliability. Hypothesized correlations between similar and different constructs were as expected, supporting construct validity. On the BIS, we found a statistically significant difference (F = 11.0954, P < 0.05) between means of Tamil, Telugu, and Hindi groups, with higher body image scores in Telugu (M = 12.86; SD = 7.65) and Hindi groups (M = 12.52; SD = 7.36) indicating more symptoms/body image distress, when compared to Tamil population (M = 9.28; SD = 10.04). Conclusion: The reliability and validity of the three translated Indian versions of the BIS were maintained, providing a method for assessing body image of HNC population worldwi

Published
2022

73. The use of proxies and proxy-reported measures:a report of the international society for quality of life research (ISOQOL) proxy task force

Author

Roydhouse, Jessica K., Cohen, Matthew L., Eshoj, Henrik R., Corsini, Nadia, Yucel, Emre, Rutherford, Claudia, Wac, Katarzyna, Berrocal, Allan, Lanzi, Alyssa, Nowinski, Cindy, Roberts, Natasha, Kassianos, Angelos P., Sebille, Veronique, King, Madeleine T., Mercieca-Bebber, Rebecca, Roydhouse, Jessica K., Cohen, Matthew L., Eshoj, Henrik R., Corsini, Nadia, Yucel, Emre, Rutherford, Claudia, Wac, Katarzyna, Berrocal, Allan, Lanzi, Alyssa, Nowinski, Cindy, Roberts, Natasha, Kassianos, Angelos P., Sebille, Veronique, King, Madeleine T., and Mercieca-Bebber, Rebecca

Abstract

Aims Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. Methods We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. Results The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. Discussion Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies., Aims: Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. Methods: We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. Results: The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. Discussion: Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. Systematic review registration: PROSPERO No. CRD42018103179

Published
2022

76. Decision coaching for people making healthcare decisions

Author

Jull, Janet, additional, Köpke, Sascha, additional, Smith, Maureen, additional, Carley, Meg, additional, Finderup, Jeanette, additional, Rahn, Anne C, additional, Boland, Laura, additional, Dunn, Sandra, additional, Dwyer, Andrew A, additional, Kasper, Jürgen, additional, Kienlin, Simone Maria, additional, Légaré, France, additional, Lewis, Krystina B, additional, Lyddiatt, Anne, additional, Rutherford, Claudia, additional, Zhao, Junqiang, additional, Rader, Tamara, additional, Graham, Ian D, additional, and Stacey, Dawn, additional

Published
2021
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79. Correction to: Trials with patient-reported outcomes registered on the Australian New Zealand Clinical Trials Registry (ANZCTR)

Author

Mercieca-Bebber, Rebecca, Williams, Douglas, Tait, Margaret-Ann, Roydhouse, Jessica, Busija, Lucy, Sundaram, Chindhu Shunmuga, Wilson, Michelle, Langford, Ailsa, Rutherford, Claudia, Roberts, Natasha, King, Madeleine, Vodicka, Elisabeth, Devine, Beth, and the International Society for Quality of Life Research (ISOQOL)

Published
2018
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82. ‘Give Us The Tools!’: development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension

Author

Cruz Rivera, Samantha, primary, Stephens, Richard, additional, Mercieca-Bebber, Rebecca, additional, Retzer, Ameeta, additional, Rutherford, Claudia, additional, Price, Gary, additional, Slade, Anita, additional, Aiyegbusi, Olalekan Lee, additional, Edge, Philip, additional, Roberts, Lesley, additional, Gosden, Lesley, additional, Verdi, Rav, additional, Wilson, Roger, additional, and Calvert, Melanie, additional

Published
2021
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83. Additional file 1 of Patient-reported anxiety and depression measures for use in Indian head and neck cancer populations: a psychometric evaluation

Author

Shunmugasundaram, Chindhu, Dhillon, Haryana M., Butow, Phyllis N., Sundaresan, Puma, Chittem, Mahati, Akula, Niveditha, Veeraiah, Surendran, and Rutherford, Claudia

Subjects
behavioral disciplines and activities
Abstract

Additional file 1: Supplementary Table 1. Zung’s self-rating anxiety scale items only: Principal Component analysis (EFA) with Varimax rotation (Items with a factor-loading coefficient ≥ 0.3 are retained in each factor (scale)). Supplementary Table 2. Patient Health Questionnaire-9 items only: Principal Component analysis (PCA) with Varimax rotation (Items with a factor-loading coefficient ≥ 0.3 are retained in each factor (scale)).

Published
2021
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84. The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force

Author

Roydhouse, Jessica K., Cohen, Matthew L., Eshoj, Henrik R., Corsini, Nadia, Yucel, Emre, Rutherford, Claudia, Wac, Katarzyna, Berrocal, Allan, Lanzi, Alyssa, Nowinski, Cindy, Roberts, Natasha, Kassianos, Angelos P., Sebille, Veronique, King, Madeleine T., and Mercieca-Bebber, Rebecca

Subjects
Quality of life, ddc:025.06/650, Systematic review, Proxy-reported outcomes, Outcome measures, Proxy measures
Published
2021

85. Decision coaching for people making healthcare decisions

Author

Jull, Janet, Koepke, Sascha, Smith, Maureen, Carley, Meg, Finderup, Jeanette, Rahn, Anne C., Boland, Laura, Dunn, Sandra, Dwyer, Andrew A., Kasper, Jurgen, Kienlin, Simone Maria, Legare, France, Lewis, Krystina B., Lyddiatt, Anne, Rutherford, Claudia, Zhao, Junqiang, Rader, Tamara, Graham, Ian D., Stacey, Dawn, Jull, Janet, Koepke, Sascha, Smith, Maureen, Carley, Meg, Finderup, Jeanette, Rahn, Anne C., Boland, Laura, Dunn, Sandra, Dwyer, Andrew A., Kasper, Jurgen, Kienlin, Simone Maria, Legare, France, Lewis, Krystina B., Lyddiatt, Anne, Rutherford, Claudia, Zhao, Junqiang, Rader, Tamara, Graham, Ian D., and Stacey, Dawn

Abstract

Background Decision coaching is non -directive support delivered by a healthcare provider to help patients prepare to actively participate in making a hea[th decision. 'Healthcare providers' are considered to be aEl people who are engaged in actions whose primary intent is to protect and improve health (e.g. nurses, doctors, pharmacists, social workers, health support vvorkers such as peer health workers). Little is known about the effectiveness of decision coaching. Objectives To determine the effects of decision coaching (I) for people facing healthcare decisions for themselves or a family member (P) compared to (C) usual care or evidence -based intervention only, on outcomes (0) related to preparation for decision making, decisional needs and potential adverse effects. Search methods We searched the Cochrane Library (Wiley), Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), CI NAHL (Ebsco), Nursing and Allied Health Source (ProQuest), and Web of Science from database inception to June 2021. Selection criteria We included randomised controlled trials (RCTs) where the intervention was provided to adults or children preparing to make a treatment or screening healthcare decision for themselves or a family member. Decision coaching was defined as: a) delivered individually by a healthcare provider who istrained or using a protocol; and b) providing non -directive support and preparing an adult or child to participate in a healthcare decision. Comparisons included usual care or an alternate intervention. There were no language restrictions. Data collection and analysis Two authors independently screened citations, assessed risk of bias, and extracted data on characteristics of the intervention(s) and outcomes. Any disagreements were resolved by discussion to reach consensus. We used the standardised mean difference (SMD) with 95% confidence intervals (CI) as the measures of treatment effect and, where possible, sy

Published
2021

87. Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology–Polycystic Kidney Disease (SONG-PKD) Consensus Workshop

Author

Cho, Yeoungjee, primary, Tong, Allison, additional, Craig, Jonathan C., additional, Mustafa, Reem A., additional, Chapman, Arlene, additional, Perrone, Ronald D., additional, Ahn, Curie, additional, Fowler, Kevin, additional, Torres, Vicente, additional, Gansevoort, Ron T., additional, Ong, Albert C.M., additional, Coolican, Helen, additional, Tze-Wah Kao, Juliana, additional, Harris, Tess, additional, Gutman, Talia, additional, Shen, Jenny I., additional, Viecelli, Andrea K., additional, Johnson, David W., additional, Au, Eric, additional, El-Damanawi, Ragada, additional, Logeman, Charlotte, additional, Ju, Angela, additional, Manera, Karine E., additional, Chonchol, Michel, additional, Odland, Dwight, additional, Baron, David, additional, Pei, York, additional, Sautenet, Benedicte, additional, Rastogi, Anjay, additional, Sharma, Ankit, additional, Rangan, Gopala, additional, Levin, Adeera, additional, Yu, Alan, additional, Ong, Albert, additional, Thompson, Aliza, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Viecelli, Andrea, additional, Mallett, Andrew, additional, Wang, Angela, additional, Rastog, Anjay, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Canaud, Bernard, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Hanson, Camilla, additional, Hawley, Carmel, additional, Pollock, Carol, additional, Chao, Chia-Ter, additional, Rutherford, Claudia, additional, Sumpton, Daniel, additional, Harris, David, additional, Johnson, David, additional, Wheeler, David, additional, Mekahli, Djalila, additional, O’Donoghue, Donal, additional, Peters, Dorien, additional, Oberdhan, Dorothee, additional, Balovlenkov, Elena, additional, O'Lone, Emma, additional, Tentori, Francesca, additional, Czerwiec, Frank, additional, Oskoui, Frederic Rahbari, additional, Rangan, Gopi, additional, Germino, Gregory, additional, Park, Hayne, additional, Htay, Htay, additional, Ryu, Hyunjin, additional, Norton, Jenna, additional, Shen, Jenny, additional, Gill, John, additional, Kao, Juliana, additional, Eckardt, Kai-Uwe, additional, Manera, Karine, additional, Van, Kim Linh, additional, Guay-Woodford, Lisa, additional, Krishnan, Mahesh, additional, Hogan, Marie, additional, Howell, Martin, additional, Park, Meyeon, additional, Mrug, Michal, additional, Ta, Michelle, additional, Evangelidis, Nicole, additional, Harris, Peter, additional, Tugwell, Peter, additional, Garimella, Pranav, additional, Krishnasamy, Rathika, additional, Mustafa, Reem, additional, McGee, Richard, additional, Pecoits-Filho, Roberto, additional, Gansevoort, Ron, additional, Perrone, Ronald, additional, Torra, Roser, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Bernays, Sarah, additional, Horie, Shigeo, additional, Carter, Simon, additional, Palmer, Suetonia, additional, Mendley, Susan, additional, Watnick, Terry, additional, Hiemstra, Thomas, additional, Weimbs, Thomas, additional, Jha, Vivek, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Cho, Yeoungjee, additional, Oh, Yun Kyu, additional, Clark, David, additional, McGinty-Poteet, Debra, additional, King, Elizabeth, additional, Vickers, Frances, additional, Odland, Jean, additional, Lee, Lynore, additional, Vickers, Marvin, additional, Johnston-Clark, Mary, additional, Dorsey, Robin, additional, and Baron, Zachary, additional

Published
2021
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88. Body Image Scale--Tamil Version

Author

Shunmugasundaram, Chindhu, primary, Dhillon, Haryana M., additional, Butow, Phyllis N., additional, Sundaresan, Puma, additional, and Rutherford, Claudia, additional

Published
2021
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89. Body Image Scale--Hindi Version

Author

Shunmugasundaram, Chindhu, primary, Dhillon, Haryana M., additional, Butow, Phyllis N., additional, Sundaresan, Puma, additional, and Rutherford, Claudia, additional

Published
2021
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91. Validation of a Core Patient-Reported Outcome Measure for Fatigue in Patients Receiving Hemodialysis

Author

Ju, Angela, primary, Teixeira-Pinto, Armando, additional, Tong, Allison, additional, Smith, Alice C., additional, Unruh, Mark, additional, Davison, Sara N., additional, Dapueto, Juan, additional, Dew, Mary Amanda, additional, Fluck, Richard, additional, Germain, Michael J., additional, Jassal, Sarbjit V., additional, Obrador, Gregorio T., additional, O’Donoghue, Donal, additional, Viecelli, Andrea K., additional, Strippoli, Giovanni, additional, Ruospo, Marinella, additional, Timofte, Delia, additional, Sharma, Ankit, additional, Au, Eric, additional, Howell, Martin, additional, Costa, Daniel S.J., additional, Anumudu, Samaya, additional, Craig, Jonathan C., additional, and Rutherford, Claudia, additional

Published
2020
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95. Establishing a Core Outcome Set for Peritoneal Dialysis: Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop

Author

Manera, Karine E., primary, Johnson, David W., additional, Craig, Jonathan C., additional, Shen, Jenny I., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Wang, Angela Yee-Moon, additional, Brown, Edwina A., additional, Brunier, Gillian, additional, Dong, Jie, additional, Dunning, Tony, additional, Mehrotra, Rajnish, additional, Naicker, Saraladevi, additional, Pecoits-Filho, Roberto, additional, Perl, Jeffrey, additional, Wilkie, Martin, additional, Tong, Allison, additional, Levin, Adeera, additional, Liew, Adrian, additional, Cueto Manzano, Alfonso, additional, Abu Alfa, Ali, additional, Neu, Alicia, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Figueiredo, Ana, additional, Matus, Andrea, additional, Viecelli, Andrea, additional, Ju, Angela, additional, Saxena, Anjali, additional, Sharma, Ankit, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Mendelson, Asher, additional, Kelly, Ayano, additional, Goh, Bak Leong, additional, Sautenet, Benedicte, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Robinson, Bruce, additional, Hanson, Camilla, additional, Cheung, Catherine, additional, Guha, Chandana, additional, Logeman, Charlotte, additional, Szeto, Cheuk-Chun, additional, Rutherford, Claudia, additional, Schwartz, Daniel, additional, Sumpton, Daniel, additional, Johnson, David, additional, Wheeler, David, additional, Brown, Edwina, additional, O’Lone, Emma, additional, Au, Eric, additional, Goffin, Eric, additional, Finkelstein, Fred, additional, Abraham, Georgi, additional, Germino, Greg, additional, Hurst, Helen, additional, Kawanishi, Hideki, additional, Htay, Htay, additional, Yap, Hui Kim, additional, Teitelbaum, Isaac, additional, Chen, Jenny, additional, Shen, Jenny, additional, Neumann, Joanna, additional, Bargman, Joanne, additional, Morelle, Johann, additional, Craig, Jonathan, additional, Kilonzo, Kajiru Gad, additional, Yeates, Karen, additional, Manera, Karine, additional, Azukaitis, Karolis, additional, Van, Kim Linh, additional, Dunn, Louese, additional, Krishnan, Mahesh, additional, Lambie, Mark, additional, Howell, Martin, additional, Schreiber, Martin, additional, Oliver, Matthew, additional, Sanabria, Mauricio Rafael, additional, Nataatmadja, Melissa, additional, Lichodziejewska-Niemierko, Monika, additional, Verdin, Nancy, additional, Mann, Neelam, additional, Boudville, Neil, additional, Evangelidis, Nicole, additional, Scholes-Robertson, Nicole, additional, Blake, Peter, additional, Nourse, Peter, additional, Tugwell, Peter, additional, Li, Philip Kam-Tao, additional, McGee, Richard, additional, Quinn, Robert, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Bernays, Sarah, additional, Naicker, Sarala, additional, Wilson, Scott, additional, Nessim, Sharon, additional, Teo, Sharon, additional, Carter, Simon A., additional, Davies, Simon, additional, Sweety, Soheli Ahmed, additional, Toffelmire, Ted, additional, Jassal, Vanita, additional, Jha, Vivekanand, additional, da Silva, Viviane Calice, additional, Van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Ito, Yasuhiko, additional, Kim, Yong-Lim, additional, and Butt, Zeeshan, additional

Published
2020
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98. 47 Views of healthcare professionals on issues around ductal carcinoma in situ detected through an expanded mammography screening program

Author

Hersch, Jolyn, primary, Jansen, Jesse, additional, Nickel, Brooke, additional, Rutherford, Claudia, additional, Houssami, Nehmat, additional, Barratt, Alexandra, additional, Saunders, Christobel, additional, Spillane, Andrew, additional, Stuart, Kirsty, additional, Wylie, Elizabeth, additional, Robertson, Geraldine, additional, and McCaffery, Kirsten, additional

Published
2019
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99. Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology-Kidney Transplantation Consensus Workshop Report

Author

Lentine, Krista, Malone, Andrew, Mannon, Roslyn, Oberbauer, Rainer, Patzer, Rachel, Peipert, John Devin, Phan, Hai An, Poggio, Emilio, Reed, Rihannon, Scandling, John, Tang, Ignatius, Watson, Chris, Contrares, Daniel, Contreras, Patricia, Cross, Daley, Juodvalkis, Egle, Koide, Den, Koide, Jinny, Kozarewicz, Adam, Kozarewicz, Laura, Kozarewicz, Richard, Koritala, Andrea, Lisiecki, Elizabeth, Lipuma, Christine, Lyman, Margaret, Mueller, Robert, Mueller, Gloria, Noble, Larry, Nolan, Nancy, Nolan, Stephen, Thomas, Jim, Urbancyzk, Lynda, Zerante, James, Zerante, Susan, Ju, Angela, Josephson, Michelle A., Butt, Zeeshan, Jowsey-Gregoire, Sheila, Tan, Jane, Taylor, Quinetta, Fowler, Kevin, Dobbels, Fabienne, Caskey, Fergus, Jha, Vivekanand, Locke, Jayme, Knoll, Greg, Ahn, Curie, Hanson, Camilla S., Sautenet, Benedicte, Manera, Karine, Craig, Jonathan C., Howell, Martin, Rutherford, Claudia, Tong, Allison, Harden, Paul, Hawley, Carmel, Holdaas, Hallvard, Israni, Ajay, Jesse, Michelle, Kane, Brenna, Kanellis, John, Kiberd, Bryce, Kim, Joseph, Larsen, Chris, Leichtman, Alan, MethodS in Patients-centered outcomes and HEalth ResEarch (SPHERE), Université de Tours (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques, Université de Nantes (UN)-Université de Nantes (UN), and Université de Tours-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques

Subjects
Nephrology, medicine.medical_specialty, Activities of daily living, DOMAINS, Consensus, Time Factors, medicine.medical_treatment, Health Status, [SDV]Life Sciences [q-bio], Immunology, 030230 surgery, 03 medical and health sciences, 0302 clinical medicine, Quality of life (healthcare), QUALITY-OF-LIFE, Risk Factors, Internal medicine, DIALYSIS, Activities of Daily Living, medicine, Humans, Patient Reported Outcome Measures, Intensive care medicine, Life Style, Kidney transplantation, Dialysis, Transplantation, Science & Technology, business.industry, medicine.disease, Mental health, Kidney Transplantation, 3. Good health, TRIALS, Mental Health, Treatment Outcome, Quality of Life, Kidney Failure, Chronic, 030211 gastroenterology & hepatology, Surgery, SOCIAL-PARTICIPATION, HEALTH, business, Life Sciences & Biomedicine, Immunosuppressive Agents, Kidney disease
Abstract

BACKGROUND: Kidney transplantation confers substantial survival and quality of life benefits for many patients with end-stage kidney disease compared with dialysis, but complications and side effects of immunosuppression can impair participation in daily life activities. Life participation is a critically important patient-reported outcome for kidney transplant recipients but is infrequently and inconsistently measured in trials. We convened a consensus workshop on establishing an outcome measure for life participation for use in all trials in kidney transplantation. METHODS: Twenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from 8 countries participated in 6 facilitated breakout group discussions. Transcripts were analyzed thematically. RESULTS: Four themes were identified. Returning to normality conveyed the patients' goals to fulfill their roles (ie, in their family, work, and community) and reestablish a normal lifestyle after transplant. Recognizing the diverse meaning and activities of "life" explicitly acknowledged life participation as a subjective concept that could refer to different activities (eg, employment, recreation, family duties) for each individual patient. Capturing vulnerability and fluctuations posttransplant (eg, due to complications and side-effects) distinguished between experiences in the first year posttransplant and the long-term impact of transplantation. Having a scientifically rigorous, feasible, and meaningful measure was expected to enable consistent and frequent assessment of life participation in trials in kidney transplantation. CONCLUSIONS: A feasible and validated core outcome measure for life participation is needed so that this critically important patient-reported outcome can be consistently and meaningfully assessed in trials in kidney transplantation to inform decision making and care of recipients. ispartof: TRANSPLANTATION vol:103 issue:6 pages:1199-1205 ispartof: location:United States status: published

Published
2019

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