American Journal of Kidney Diseases

Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study

Published:March 08, 2016DOI:


      In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients’ priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis.

      Study Design

      Nominal group technique.

      Setting & Participants

      Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary).


      Identification and ranking of outcomes.

      Analytical Approach

      Mean rank score (of 10) for top 10 outcomes and thematic analysis.


      82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness.


      Only English-speaking participants were eligible.


      Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.

      Index Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to American Journal of Kidney Diseases
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Gandhi G.Y.
        • Murad M.H.
        • Fujiyoshi A.
        • et al.
        Patient-important outcomes in registered diabetes trials.
        JAMA. 2008; 299: 2543-2549
        • Inrig J.K.
        • Califf R.M.
        • Tasneem A.
        • et al.
        The landscape of clinical trials in nephrology: a systematic review of
        Am J Kidney Dis. 2014; 63: 771-780
        • Yudkin J.S.
        • Lipska K.J.
        • Montori V.M.
        The idolatry of the surrogate.
        BMJ. 2011; 343: d7995
        • Chalmers I.
        • Glasziou P.
        Avoidable waste in the production and reporting of research evidence.
        Lancet. 2009; 374: 86-89
        • Chalmers I.
        • Bracken M.
        • Djulbegovic B.
        • et al.
        How to increase value and reduce waste when research priorities are set.
        Lancet. 2014; 383: 156-165
        • Fortnum D.
        • Smolonogov T.
        • Walker R.
        • Kairaitis L.
        • Pugh D.
        ‘My kidneys, my choice, decision aid': supporting shared decision making.
        J Ren Care. 2015; 41: 81-87
        • Morton R.L.
        • Tong A.
        • Howard K.
        • Snelling P.
        • Webster A.C.
        The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
        BMJ. 2010; 340: c112
        • Morton R.L.
        • Tong A.
        • Webster A.C.
        • Snelling P.
        • Howard K.
        Characteristics of dialysis important to patients and family caregivers: a mixed methods approach.
        Nephrol Dial Transplant. 2011; 26: 4038-4046
        • Tong A.
        • Crowe S.
        • Chando S.
        • et al.
        Research priorities in CKD: report of a national workshop conducted in Australia.
        Am J Kidney Dis. 2015; 66: 212-222
        • Williams G.J.
        • Tong A.
        • Manns B.
        • et al.
        Scope and consistency of outcomes reported in randomised trials of haemodialysis.
        Nephrology. 2015; 20: 7-11
        • Palmer S.C.
        • Hayen A.
        • Macaskill P.
        • et al.
        Serum levels of phosphorus, parathyroid hormone, and calcium and risks of death and cardiovascular disease in individuals with chronic kidney disease: a systematic review and meta-analysis.
        JAMA. 2011; 305: 1119-1127
        • Phrommintikul A.
        • Haas S.J.
        • Elsik M.
        • Krum H.
        Mortality and target haemoglobin concentrations in anaemic patients with chronic kidney disease treated with erythropoietin: a meta-analysis.
        Lancet. 2007; 369: 381-388
        • Howell M.
        • Tong A.
        • Wong G.
        • Craig J.C.
        • Howard K.
        Important outcomes for kidney transplant recipients: a nominal group and qualitative study.
        Am J Kidney Dis. 2012; 60: 186-196
        • Manns B.
        • Hemmelgarn B.
        • Lillie E.
        • et al.
        Setting research priorities for patients on or nearing dialysis.
        Clin J Am Soc Nephrol. 2014; 9: 1813-1821
        • Howard K.
        • Jan S.
        • Rose J.
        • et al.
        Community preferences for the allocation & donation of organs–the PAraDOx Study.
        BMC Public Health. 2011; 11: 386
        • James D.
        • Warren-Forward H.
        Research methods for formal consensus development.
        Nurse Res. 2015; 22: 35-40
        • Jones J.
        • Hunter D.
        Consensus methods for medical and health services research.
        BMJ. 1995; 311: 376-380
        • Corner J.
        • Wright D.
        • Hopkinson J.
        • Gunaratnam Y.
        • McDonald J.W.
        • Foster C.
        The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study.
        Br J Cancer. 2007; 96: 875-881
        • Pruchno R.A.
        • Lemay E.P.
        • Feild L.
        • Levinsky N.G.
        Spouse as health care proxy for dialysis patients: whose preferences matter?.
        Gerontologist. 2005; 45: 812-819
        • Pruchno R.A.
        • Lemay Jr., E.P.
        • Feild L.
        • Levinsky N.G.
        Predictors of patient treatment preferences and spouse substituted judgments: the case of dialysis continuation.
        Med Decis Making. 2006; 26: 112-121
        • Wyld M.
        • Morton R.L.
        • Hayen A.
        • Howard K.
        • Webster A.C.
        A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.
        PLoS Med. 2012; 9: e1001307
        • Curtin R.B.
        • Oberley E.T.
        • Sacksteder P.
        • Friedman A.
        Differences between employed and nonemployed dialysis patients.
        Am J Kidney Dis. 1996; 27: 533-540
        • Muehrer R.J.
        • Schatell D.
        • Witten B.
        • Gangnon R.
        • Becker B.N.
        • Hofmann R.M.
        Factors affecting employment at initiation of dialysis.
        Clin J Am Soc Nephrol. 2011; 6: 489-496
        • Sheeran P.
        • Abraham C.
        Unemployment and self-conception: a symbolic interactionist analysis.
        J Community Appl Soc Psychol. 1994; 4: 115-129
        • Tong A.
        • Manns B.
        • Hemmelgarn B.
        • et al.
        Standardised Outcomes in Nephrology - Haemodialysis (SONG-HD): study protocol for establishing a core outcome set in haemodialysis.
        Trials. 2015; 16: 364
      1. ANZDATA. Chapter 4: haemodialysis. In: ANZDATA Registry 37th Report. Adelaide, Australia: Australia and New Zealand Dialysis and Transplant Registry; 2015:1-38.

        • Canadian Institute for Health Information
        Canadian Organ Replacement Register Annual Report: Treatment of End-Stage Organ Failure, 2004 to 2013.
        CIHI, Ottawa, Canada2015
        • Kucirka L.M.
        • Grams M.E.
        • Lessler J.
        • et al.
        Association of race and age with survival among patients undergoing dialysis.
        JAMA. 2011; 306: 620-626
        • Yeates K.
        Health disparities in renal disease in Canada.
        Semin Nephrol. 2010; 30: 12-18
        • Zarkowsky D.S.
        • Arhuidese I.J.
        • Hicks C.W.
        • et al.
        Racial/ethnic disparities associated with initial hemodialysis access.
        JAMA Surg. 2015; 150: 529-536
        • Volkova N.
        • McClellan W.
        • Soucie J.M.
        • Schoolwerth A.
        Racial disparities in the prevalence of cardiovascular disease among incident end-stage renal disease patients.
        Nephrol Dial Transplant. 2006; 21: 2202-2209
        • Palmer S.C.
        • Palmer A.R.
        • Craig J.C.
        • et al.
        Home versus in-centre haemodialysis for end-stage kidney disease.
        Cochrane Database Syst Rev. 2014; 11: CD009535
        • Kraus M.
        • Burkart J.
        • Hegeman R.
        • Solomon R.
        • Coplon N.
        • Moran J.
        A comparison of center-based vs. home-based daily hemodialysis for patients with end-stage renal disease.
        Hemodial Int. 2007; 11: 468-477
        • Kirwan J.
        • Heiberg T.
        • Hewlett S.
        • et al.
        Outcomes from the Patient Perspective Workshop at OMERACT 6.
        J Rheumatol. 2003; 30: 868-872
        • Prinsen C.A.
        • Vohra S.
        • Rose M.R.
        • et al.
        Core Outcome Measures in Effectiveness Trials (COMET) initiative: protocol for an international Delphi study to achieve consensus on how to select outcome measurement instruments for outcomes included in a ‘core outcome set.'.
        Trials. 2014; 15: 247
        • Tugwell P.
        • Boers M.
        • Brooks P.
        • Simon L.
        • Strand V.
        • Idzerda L.
        OMERACT: an international initiative to improve outcome measurement in rheumatology.
        Trials. 2007; 8: 38
        • Clarke M.
        • Williamson P.
        Core outcome sets and trial registries.
        Trials. 2015; 16: 216
        • Kirwan J.R.
        • Hewlett S.
        Patient perspective: reasons and methods for measuring fatigue in rheumatoid arthritis.
        J Rheumatol. 2007; 34: 1171-1173
        • Breckenridge K.
        • Bekker H.L.
        • Gibbons E.
        • et al.
        How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.
        Nephrol Dial Transplant. 2015; 30: 1605-1614
        • Hays R.D.
        • Kallich J.D.
        • Mapes D.L.
        • Coons S.J.
        • Carter W.B.
        Development of the Kidney Disease Quality of Life (KDQOL) instrument.
        Qual Life Res. 1994; 3: 329-338
        • Hawker G.A.
        • Davis A.M.
        • French M.R.
        • et al.
        Development and preliminary psychometric testing of a new OA pain measure–an OARSI/OMERACT initiative.
        Osteoarthritis Cartilage. 2008; 16: 409-414
        • PROMIS® Validity Standards Committee on behalf of the PROMIS Network of Investigators
        PROMIS Instrument Development and Validation Scientific Standards Version 2.0.
        PROMIS, Chapel Hill, NC2012