302
Views
28
CrossRef citations to date
0
Altmetric
Original Research

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

, , &
Pages 691-701 | Published online: 27 Sep 2012

References

  • StrongMJThe syndromes of frontotemporal dysfunction in amyotrophic lateral sclerosisAmyotroph Lat Scler200896323338
  • StrongMJGraceGMFreedmanMConsensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosisAmyotroph Lateral Scler200910313114619462523
  • MillerRGJacksonCEKasarskisEJPractice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of NeurologyNeurology200973151227123319822873
  • MitsumotoHBrombergMJohnstonWPromoting excellence in end-of-life care in ALSAmyotroph Lateral Scler Other Motor Neuron Disord20056314515416183556
  • NeudertCOliverDWasnerMBorasioGDThe course of the terminal phase in patients with amyotrophic lateral sclerosisJ Neurol2001248761261611518004
  • TraynorBJCoddMBCorrBFordeCFrostEHardimanOMClinical features of amyotrophic lateral sclerosis according to the El Escorial and Airlie House diagnostic criteria: A population-based studyArch Neurol20005781171117610927797
  • LilloPMioshiEZoingMCKiernanMCHodgesJRHow common are behavioural changes in amyotrophic lateral sclerosis?Amyotroph Lateral Scler2011121455120849323
  • HardimanOKiernanMCMultidisciplinary care in motor neurone diseaseThe Motor Neurone Disease HandbookSydney, AustraliaMJA Books2007
  • TraynorBJAlexanderMCorrBFrostEHardimanOEffect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996–2000J Neurol Neurosurg Psychiatry20037491258126112933930
  • Van den BergJPKalmijnSLindemanEMultidisciplinary ALS care improves quality of life in patients with ALSNeurology20056581264126716247055
  • OliverDJTurnerMRSome difficult decisions in ALS/MNDAmyotroph Lateral Scler201011433934320550485
  • VeseySLesliePExleyCA pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditionsDysphagia200823331031618437463
  • AlbertSMWhitakerARabkinJGMedical and supportive care among people with ALS in the months before death or tracheostomyJ Pain Symptom Manage200938454655319540088
  • LemoignanJEllsCAmyotrophic lateral sclerosis and assisted ventilation: how patients decidePalliat Support Care20108220721320557668
  • WardALSanjakMDuffyKPower wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelinesArch Phys Med Rehabil201091226827220159132
  • MurphyJ“I Prefer Contact This Close”: perceptions of AAC by people with motor neurone disease and their communication partnersAugment Altern Commun2004204259271
  • BurchardiNRauprichOHechtMBeckMVollmannJDiscussing living wills. A qualitative study of a German sample of neurologists and ALS patientsJ Neurol Sci20052371–2677416009378
  • AlbertSMMurphyPLDel BeneMLRowlandLPProspective study of palliative care in ALS: choice, timing, outcomesJ Neurol Sci19991691–210811310540017
  • MunroeCASirdofskyMDKuruTAndersonEDEnd-of-life decision making in 42 patients with amyotrophic lateral sclerosisRespir Care200752899699917650354
  • AstrowABSoodJRNolanMTDecision-making in patients with advanced cancer compared with amyotrophic lateral sclerosisJ Med Ethics200834966466818757636
  • CoulterAEllinsJEffectiveness of strategies for informing, educating, and involving patientsBMJ20073357609242717615222
  • LegareFRatteSStaceyDInterventions for improving the adoption of shared decision making by healthcare professionalsCochrane Database Syst Rev20105CD00673220464744
  • NolanMTHughesMNarendraDPWhen patients lack capacity: the roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisionsJ Pain Symptom Manage200530434235316256898
  • NolanMTHughesMTKubJDevelopment and validation of the Family Decision-Making Self-Efficacy ScalePalliat Support Care20097331519788773
  • MockfordCJenkinsonCFitzpatrickRA Review: carers, MND and service provisionAmyotroph Lateral Scler20067313214116963402
  • HardimanOTraynorBJCorrBFrostEModels of care for motor neuron disease: setting standardsAmyotroph Lateral Scler Other Motor Neuron Disord20023418218512710506
  • ChiòAMontuschiACammarosanoSALS patients and caregivers communication preferences and information seeking behaviourEur J Neurol2008151556018005051
  • ChiòABorasioGDBreaking the news in amyotrophic lateral sclerosisAmyotroph Lateral Scler Other Motor Neuron Disord20045419520115799546
  • AlbertSMMurphyPLDel BeneMLRowlandLPA prospective study of preferences and actual treatment choices in ALSNeurology199953227828310430414
  • HiranoYYamazakiYEthical issues in invasive mechanical ventilation for amyotrophic lateral sclerosisNurs Ethics2010171516320089625
  • SeeberAAHijdraAVermeulenMWillemsDLDiscussions about treatment restrictions in chronic neurologic diseases: a structured reviewNeurology201278859059722351797
  • SulmasyDPHughesMTThompsonREHow would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal studyJ Am Geriatr Soc200755121981198818031490
  • AlbertSRabkinJBeneMDWish to die in end-stage ALSNeurology2005651687416009887
  • OliverDVentilation in motor neuron disease: difficult decisions in difficult circumstancesAmyotroph Lateral Scler Other Motor Neuron Disord2004516815204017
  • BélangerERodríguezCGroleauDShared decision-making in palliative care:a systematic mixed studies review using narrative synthesisPalliat Med2010253242261
  • FoleyGTimonenVHardimanOExperience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiencesAm J Hosp Palliat Care201229536236721998444
  • DybwikKNielsenEWBrinchmannBSHome mechanical ventilation and specialised health care in the community: between a rock and a hard placeBMC Health Serv Res20111111521605365
  • CarterHMcKennaCMacLeodRGreenRHealth professionals’ responses to multiple sclerosis and motor neurone diseasePalliat Med19981253833949924601
  • HugelHPihNDouganCPRigbySYoungCAIdentifying poor adaptation to a new diagnosis of motor neuron disease: a pilot study into the value of an early patient-led interviewAmyotroph Lateral Scler2010111–210410919308766
  • BrombergMBSchenkenbergTBrownellAAA survey of stress among amyotrophic lateral sclerosis care providersAmyotroph Lateral Scler201112316216721545236
  • MeloCGOliverDCan addressing death anxiety reduce health care workers’ burnout and improve patient care?J Palliat Care201127428729522372283
  • KiernanMCVucicSCheahBCAmyotrophic lateral sclerosisLancet2011377976994295521296405
  • LiamputtongPQualitative Research Methods3rd edMelbourne, AustraliaOxford University Press2009
  • EmanuelEJEmanuelLLFour models of the physician-patient relationshipJAMA199226716222122261556799
  • DegnerLFSloanJADecision making during serious illness: what role do patients really want to play?J Clin Epidemiol19924599419501432023
  • CharlesCGafniAWhelanTDecision-making in the physician-patient encounter: revisiting the shared treatment decision-making modelSoc Sci Med199949565166110452420
  • DegnerLFSloanJAVenkateshPThe Control Preferences ScaleCan J Nurs Res199729321439505581
  • O’ConnorAMOttowa decision support framework to address decisional conflict2006 Available from: http://www.ohri.ca/decisionaidAccessed July 16, 2012.
  • NolanMTKubJHughesMTFamily health care decision making and self-efficacy with patients with ALS at the end of lifePalliat Support Care20086327328018662421
  • CreswellJWResearch Design: Qualitative, Quantitative and Mixed Methods Approaches3rd edThousand Oaks, CASage Publications2009
  • BraunVClarkeCUsing thematic analysis in psychologyQual Res Psychol2006377101
  • WoolleySCMooreDHKatzJSInsight in ALS: awareness of behavioral change in patients with and without FTDAmyotroph Lateral Scler2010111–2525619714539
  • HoggKEGoldsteinLHLeighPNThe psychological impact of motor neurone diseasePsychol Med19942436256327991744
  • BrownWAMuellerPSPsychological function in individuals with amyotrophic lateral sclerosis (ALS)Psychosom Med19703221411524392415
  • HouptJLGouldBSNorrisFHJrPsychological characteristics of patients with amyotrophic lateral sclerosis (ALS)Psychosom Med1977395299303910010
  • LocockLZieblandSDumelowCBiographical disruption, abruption and repair in the context of motor neurone diseaseSociol Health Illn20093171043105819659736
  • WitgertMSalamoneARStruttAMFrontal-lobe mediated behavioral dysfunction in amyotrophic lateral sclerosisEur J Neurol201017110311019874396
  • SpathisABoothSEnd of life care in chronic obstructive pulmonary disease: in search of a good deathInt J Chron Obstruct Pulmon Dis200831112918488426
  • ClaytonJMButowPNTattersallMHWhen and how to initiate discussion about prognosis and end-of-life issues with terminally ill patientsJ Pain Symptom Manage200530213214416125028
  • BedlackRHardimanOALSUntangled (ALSU): a scientific approach to off-label treatment options for people with ALS using tweets and twittersAmyotroph Lateral Scler200910312913019455452
  • FrostJHMassagliMPWicksPHeywoodJHow the social web supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informaticsAMIA Annu Symp Proc200821722118999176
  • FrostJMassagliMPatientsLikeMe: the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary healthChron Respir Dis20096422522919858352
  • ChiòAISIS survey: an international study on the diagnostic process and its implications in amyotrophic lateral sclerosisJ Neurol1999246Suppl 3III1III510631652
  • O’BrienMRWhiteheadBJackBAMitchellJDFrom symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers – a qualitative studyAmyotroph Lateral Scler20111229710421208037
  • HugelHGrundyNRigbySYoungCAHow does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practiceAmyotroph Lateral Scler20067316116616963405
  • FoleyGTimonenVHardimanOPatients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: a reviewAmyotroph Lateral Scler2012131112421879834
  • FoleyGO’MahonyPHardimanOPerceptions of quality of life in people with ALS: effects of coping and health careAmyotroph Lateral Scler20078316416917538778
  • FoleyGThe complexity of care in amyotrophic lateral sclerosisAmyotroph Lateral Scler201112316016121294666
  • RoachARAverillAJSegerstromSCKasarskisEJThe dynamics of quality of life in ALS patients and caregiversAnn Behav Med200937219720619350337
  • FeggMJWasnerMNeudertCBorasioGDPersonal values and individual quality of life in palliative care patientsJ Pain Symptom Manage200530215415916125030
  • HughesRASinhaAHigginsonIJDownKLeighPNLiving with motor neurone disease: lives, experiences of services and suggestions for changeHealth Soc Care Community2005131647415717908
  • RodriguezKLYoungAJPatients’ and healthcare providers’ understandings of life-sustaining treatment: are perceptions of goals shared or divergent?Soc Sci Med200662112513315993530
  • BrownJBUser, carer and professional experiences of care in motor neurone diseasePrim Health Care Res Dev20034207217
  • ButowPNShared decision making in cancer careClin Psychol2005925458
  • FordSSchofieldTHopeTAre patients’ decision-making preferences being met?Health Expect200361728012603630
  • TsouAYKarlawishJMcCluskeyLXieSXLongJAPredictors of emergent feeding tubes and tracheostomies in amyotrophic lateral sclerosis (ALS)Amyotroph Lateral Scler201213331832522533463
  • McKimDAKingJWalkerKFormal ventilation patient education for ALS predicts real-life choicesAmyotroph Lateral Scler2012131596522214354
  • WoolleySCUtility of the amyotrophic lateral sclerosis cognitive behavioural screen (ALS CBS™)Neurodegen Dis Manage201116473479
  • Flaherty-CraigCBrothersAYangCSvobodaRSimmonsZDeclines in problem solving and anosognosia in amyotrophic lateral sclerosis: Application of guilford’s structure of intellect theoryCogn Behav Neurol2011241263421467921
  • BarsonFPKinsellaGJOngBMathersSEA neuropsychological investigation of dementia in motor neurone disease (MND)J Neurol Sci20001801–210711311090874
  • BolmsjöIHermerénGConflicts of interest: Experiences of close relatives of patients suffering from amyotrophic lateral sclerosisNurs Ethics200310218619812659489
  • AtkinsLBrownRGLeighPNGoldsteinLHMarital relationships in amyotrophic lateral sclerosisAmyotroph Lateral Scler201011434435020001487
  • SteinhauserKEClippECMcNeillyMChristakisNAMcIntyreLMTulskyJAIn search of a good death: observations of patients, families, and providersAnn Intern Med20001321082583210819707