382
Views
50
CrossRef citations to date
0
Altmetric
Original Research

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

, , &
Pages 829-838 | Published online: 27 Nov 2012

References

  • StrongMJGraceGMFreedmanMConsensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosisAmyotroph Lateral Scler200910313114619462523
  • KiernanMCVucicSCheahBCAmyotrophic lateral sclerosisLancet2011377976994295521296405
  • 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
  • GanziniLArtificial nutrition and hydration at the end of life: ethics and evidencePalliat Support Care20064213514316903584
  • GanziniLGoyERDobschaSKOregonians’ reasons for requesting physician aid in dyingArch Intern Med2009169548949219273779
  • SmythARiedlMKimuraROlickRSieglerMEnd of life decisions in amyotrophic lateral sclerosis: a cross-cultural perspectiveJ Neurol Sci1997152Suppl 1S93S969419063
  • 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
  • McKimDAKingJWalkerKFormal ventilation patient education for ALS predicts real-life choicesAmyotroph Lateral Scler2012131596522214354
  • VeseySLesliePExleyCA pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditionsDysphagia200823331031618437463
  • AlbertSMMurphyPLDel BeneMLRowlandLPA prospective study of preferences and actual treatment choices in ALSNeurology199953227828310430414
  • BeukelmanDFagerSNordnessACommunication support for people with ALSNeurol Res Int2011201171469321603029
  • WardALSanjakMDuffyKPower wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelinesArch Phys Med Rehabil201091226827220159132
  • AstrowABSoodJRNolanMTDecision-making in patients with advanced cancer compared with amyotrophic lateral sclerosisJ Med Ethics200834966466818757636
  • AlbertSMMurphyPLDel BeneMLRowlandLPProspective study of palliative care in ALS: choice, timing, outcomesJ Neurol Sci19991691–210811310540017
  • MaessenMVeldinkJHOnwuteaka-PhilipsenBDTrends and determinants of end-of-life practices in ALS in The NetherlandsNeurology2009731295496119770471
  • MunroeCASirdofskyMDKuruTAndersonEDEnd-of-life decision making in 42 patients with amyotrophic lateral sclerosisRespir Care200752899699917650354
  • FoleyGThe complexity of care in amyotrophic lateral sclerosisAmyotroph Lateral Scler201112316016121294666
  • SimondsAKLiving and dying with respiratory failure: facilitating decision makingChron Respir Dis200411565916281669
  • CharlesCGafniAWhelanTDecision-making in the physician-patient encounter: revisiting the shared treatment decision-making modelSoc Sci Med199949565166110452420
  • BélangerERodríguezCGroleauDShared decision-making in palliative care:a systematic mixed studies review using narrative synthesisPalliat Med2010253242261
  • SpathisABoothSEnd of life care in chronic obstructive pulmonary disease: in search of a good deathInt J Chron Obstruct Pulmon Dis200831112918488426
  • MossAHCaseyPStockingCBRoosRPBrooksBRSieglerMHome ventilation for amyotrophic lateral sclerosis patients: outcomes, costs, and patient, family, and physician attitudesNeurology19934324384438437718
  • HiranoYYamazakiYEthical issues in invasive mechanical ventilation for amyotrophic lateral sclerosisNurs Ethics2010171516320089625
  • NolanMTKubJHughesMTFamily health care decision making and self-efficacy with patients with ALS at the end of lifePalliat Support Care20086327328018662421
  • SulmasyDPHughesMTThompsonREHow would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal studyJ Am Geriatr Soc200755121981198818031490
  • YoungJMMarshallCLAndersonEJAmyotrophic lateral sclerosis patients’ perspectives on use of mechanical ventilationHealth Soc Work19941942532607813963
  • WhiteheadBO’BrienMRJackBAMitchellDExperiences of dying, death and bereavement in motor neurone disease: a qualitative studyPalliat Med201226436837821712334
  • KingSJDukeMMO’ConnorBALiving with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about ‘ongoing change and adaptation’J Clin Nurs200918574575419239541
  • BurchardiNRauprichOHechtMBeckMVollmannJDiscussing living wills. A qualitative study of a German sample of neurologists and ALS patientsJ Neurol Sci20052371–2677416009378
  • HughesRASinhaAHigginsonIJDownKLeighPNLiving with motor neurone disease: lives, experiences of services and suggestions for changeHealth Soc Care Community2005131647415717908
  • FoleyGO’MahonyPHardimanOPerceptions of quality of life in people with ALS: effects of coping and health careAmyotroph Lateral Scler20078316416917538778
  • BrownJBUser, carer and professional experiences of care in motor neurone diseasePrimary Health Care Res Devel20034207217
  • RodriguezKLYoungAJPatients’ and healthcare providers’ understandings of life-sustaining treatment: are perceptions of goals shared or divergent?Soc Sci Med200662112513315993530
  • BrownJAddington-HallJHow people with motor neurone disease talk about living with their illness: a narrative studyJ Adv Nurs200862220020818394032
  • OliverDVentilation in motor neuron disease: difficult decisions in difficult circumstancesAmyotroph Lateral Scler Other Motor Neuron Disord2004516815204017
  • HogdenAGreenfieldDNugusPKiernanMCEngaging patients in decision-making in amyotrophic lateral sclerosis multidisciplinary care: the views of health professionalsPatient Prefer Adherence2012669170123055703
  • SeeberAAHijdraAVermeulenMWillemsDLDiscussions about treatment restrictions in chronic neurologic diseases: a structured reviewNeurology201278859059722351797
  • CorrBFrostETraynorBJHardimanOService provision for patients with ALS/MND: a cost-effective multidisciplinary approachJ Neurol Sci1998160Suppl 1S141S1459851665
  • HardimanOMultidisciplinary care in motor neurone diseaseKiernanMCThe Motor Neurone Disease HandbookSydney, AustraliaMJA Books2007
  • TsouAYKarlawishJMcCluskeyLXieSXLongJAPredictors of emergent feeding tubes and tracheostomies in amyotrophic lateral sclerosis (ALS)Amyotroph Lateral Scler201213331832522533463
  • 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
  • Van de VenAHDelbecqALThe nominal group as a research instrument for exploratory health studiesAm J Pub Health19726233373425011164
  • LocockLZieblandSDumelowCBiographical disruption, abruption and repair in the context of motor neurone diseaseSociol Health Illn20093171043105819659736
  • LiamputtongPQualitative Research Methods3rd edMelbourne, AustraliaOxford University Press2009
  • CedarbaumJMStamblerNMaltaEThe ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory functionJ Neurol Sci19991691–2132110540002
  • DegnerLFSloanJADecision making during serious illness: what role do patients really want to play?J Clin Epidemiol19924599419501432023
  • MurrayEPollackLWhiteMLoBClinical decision-making: patients’ preferences and experiencesPatient Educ Couns200765218919616956742
  • MurrayEPollackLWhiteMLoBClinical decision-making: physicians’ preferences and experiencesBMC Fam Pract200781017362517
  • CreswellJWResearch Design: Qualitative, Quantitative and Mixed Methods Approaches3rd edThousand Oaks, CASAGE Publications2009
  • BraunVClarkeCUsing thematic analysis in psychologyQual Res Psychol2006377101
  • MazanderaniFLocockLPowellJBeing differently the same: the mediation of identity tensions in the sharing of illness experiencesSoc Sci Med201274454655322227237
  • FeggMJWasnerMNeudertCBorasioGDPersonal values and individual quality of life in palliative care patientsJ Pain Symptom Manage200530215415916125030
  • BrownWAMuellerPSPsychological function in individuals with amyotrophic lateral sclerosis (ALS)Psychosom Med19703221411524392415
  • KrampeHBartelsCVictorsonDThe influence of personality factors on disease progression and health-related quality of life in people with ALSAmyotroph Lateral Scler2008929910718428002
  • 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
  • FoleyGTimonenVHardimanOPatients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: a reviewAmyotroph Lateral Scler2012131112421879834
  • HouptJLGouldBSNorrisFHJrPsychological characteristics of patients with amyotrophic lateral sclerosis (ALS)Psychosom Med1977395299303910010
  • 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
  • HoggKEGoldsteinLHLeighPNThe psychological impact of motor neurone diseasePsychol Med19942436256327991744
  • McCabeMPRobertsCFirthLSatisfaction with services among people with progressive neurological illnesses and their carers in AustraliaNurs Health Sci200810320921518786063
  • MatuzTBirbaumerNHautzingerMKüblerACoping with amyotrophic lateral sclerosis: an integrative viewJ Neurol Neurosurg Psychiatry201081889389820587497
  • MontelSAlbertiniLSpitzECoping strategies as related to medical and demographic data in amyotrophic lateral sclerosisActa Neurol Scand2012125213614121470190
  • YoungJMMcNicollPAgainst all odds: positive life experiences of people with advanced amyotrophic lateral sclerosisHealth Soc Work199823135439522202
  • LocockLBrownJB‘All in the same boat’? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND)Soc Sci Med20107181498150520719422
  • MockSBoernerKSense making and benefit finding among patients with amyotrophic lateral sclerosis and their primary caregiversJ Health Psychol201015111512120064890
  • NelsonNDTrailMVanJNAppelSHLaiECQuality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristicsJ Palliat Med20036341742414509487
  • JohnsonJOSulmasyDPNolanMTPatients’ experiences of being a burden on family in terminal IllnessJ Hosp Palliat Nurs20079526426919183701
  • MurphyPLAlbertSMWeberCMDel BeneMLRowlandLPImpact of spirituality and religiousness on outcomes in patients with ALSNeurology200055101581158411094123
  • BeggsKChoiMTravlosAAssessing and predicting successful tube placement outcomes in ALS patientsAmyotroph Lateral Scler2010111–220320619714540
  • MitsumotoHBrombergMJohnstonWPromoting excellence in end-of-life care in ALSAmyotroph Lateral Scler Other Motor Neuron Disord20056314515416183556
  • BedePOliverDStodartJPalliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiativesJ Neurol Neurosurg Psychiatry201182441341821297150