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1 Downloaded from UvA-DARE, the institutional repository of the University of Amsterdam (UvA) File ID Filename Version uvapub: Back matter final SOURCE (OR PART OF THE FOLLOWING SOURCE): Type PhD thesis Title Optimizing quality of care for patients with ALS and their family caregivers Author(s) H.W.J. Creemers Faculty AMC-UvA Year 2016 FULL BIBLIOGRAPHIC DETAILS: Copyright It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content licence (like Creative Commons). UvA-DARE is a service provided by the library of the University of Amsterdam ( (pagedate: )
2 Dankwoord DANKWOORD Dit proefschri is tot stand gekomen dankzij de inspanningen en ondersteuning van AMC, VUmc en UMCU collega s. Allen daarvoor heel erg bedankt. Dit onderzoeksproject is opgezet voor pa ënten met ALS en hun belangrijkste mantelzorgers. Alle pa ënten en mantelzorgers die deelnamen aan de onderzoeken bedank ik voor de jd en energie die ze hebben besteed aan het invullen van de vragenlijsten en de gesprekken met de onderzoekers en de zorgcoaches. Leonard van den Berg bedank ik voor het verkrijgen van de subsidie in het kader van het ZonMw project Pallia eve zorg, waardoor het zorgcoach onderzoek mogelijk werd. Frans Nollet en Leonard van den Berg boden mij de kans om dit onderzoekstraject te doorlopen, hartelijk dank daarvoor. Leonard van den Berg, Frans Nollet, Jan Veldink en Anita Beelen als projectgroep leden bedank ik voor hun essen ële bijdrage aan de opzet en de uitwerking van de onderzoeken. Tineke Abma, Minne Bakker en Karin Schipper bedank ik voor de uitvoering van het kwalita eve onderzoek. De wetenschappelijke publica es waren niet tot stand gekomen zonder de construc eve, inhoudelijke bijdrage van alle mede auteurs: Frans Nollet, Leonard van den Berg, Jan Veldink, Anita Beelen, Hepke Grupstra, Tineke Abma, Minne Bakker, Karen Schipper en Sandra de Morée. Speciaal bedank ik Anita Beelen voor haar s mulerende, opbouwende, al jd posi eve en waar nodig ook vermanende commentaar op alles wat in de afgelopen jaren op mijn onderzoekspad kwam. Tot slot bedank ik Jeanne, Jort, Thomas, Ludo en Leandra, die me kri sch en soms verbaasd bleven volgen, een s mulans voor mij waren en, indien nodig, ervoor zorgden dat ik weer even rela veerde. D 153
3 154
4 CURRICULUM VITAE / PORT FOLIO Curriculum Vitae Huub Creemers was born in Venray, the Netherlands, on the 23 rd of November, In 1975 Huub graduated from secondary school (VWO Atheneum) at the Boschveld College in Venray. In 1980 Huub started his bachelor study on Occupa onal Therapy at the Occupa onal Therapy College in Weesp, the Netherlands. A er gradua ng as an occupa onal therapist in 1984 Huub worked as an occupa onal therapist in a rehabilita on center, a public hospital and the Academic Medical Center (AMC) in Amsterdam. Between 1994 and 2003 Huub worked as a rehabilita on advisor for several rehabilita on consul ng and sales companies. Since February 2003 Huub is employed as occupa onal therapist at the Department of Rehabilita on of the AMC where he par cipates in the mul disciplinary rehabilita on team that supports pa ents with ALS. In 2005 Huub started his master study Evidence Based Prac ce at the University of Amsterdam. A er gradua on in 2008 Huub started his PhD project on op mizing quality of care for pa ents with Amyotrophic Lateral Sclerosis (ALS) and their informal caregivers. Besides patent care and research, Huub performs substan ve suppor ve ac vi es for the Netherlands ALS Center that was established in November The Netherlands ALS Center is a center of exper se for care, research and educa on on ALS, PSMA and PLS. It is a collabora on between the Departments of Neurology and Rehabilita on of the University Medical Center Utrecht (UMCU) and the AMC Amsterdam. Huub lives with Jeanne Arts, together they are parents of Jort, Thomas, Ludo and Leandra. CV /P 155
5 Por olio PhD student: Huub Creemers PhD period: January 2008 December 2015 PhD supervisors: Prof. dr. F. Nollet Prof. dr. L.H. van den Berg 1. PHD TRAINING Year Workload (Hours / ECTS) GENERAL COURSES Basic course Prac cal Biosta s cs. AMC Graduate School for Medical / 1.2 Sciences, UVA Amsterdam Scien fic Wri ng in English for Publica on. AMC Graduate School for / 1.5 Medical Sciences, UVA Amsterdam Basic Course in Legisla on and Organiza on for Clinical Researchers / 1.1 AMC Graduate School for Medical Sciences, UVA Amsterdam Basic Course Qualita ve Health Research. AMC Graduate School for / 1.9 Medical Sciences, UVA Amsterdam Oral Presenta on in English. AMC Graduate School for Medical / 0.9 Sciences, UVA Amsterdam Advanced Topics in Biosta s cs. AMC Graduate School for Medical / 2.1 Sciences, UVA Amsterdam SPECIFIC COURSES AL(le)S uit de kast. Landelijk Mul disciplinair Symposium ALS Centrum / 0.2 Nederland. Ede AMC Spinoza Master Class Gordon Gya. Meaningful change in quality / 0.1 of life scores: can it be assessed in pa ents with amyotrophic lateral sclerosis? Department of Medical Psychology, AMC Amsterdam The future today. Symposium on technology innova ons in the care for pa ents with neuromuscular diseases. The Dutch Neuromuscular Disease Organisa on. Veldhoven / jaar ALS Centrum; van na onaal naar mondiaal. Landelijk / 0.2 Mul disciplinair Symposium ALS Centrum Nederland. Utrecht Congress Recent developments in policy, field and research on Dutch / 0.2 Health care legisla on. Julius Center UMC Utrecht Workshops Mo va onal Interviewing. Amsterdam School of Health / 0.6 Professions. Amsterdam PRESENTATIONS The effec veness of case management in the treatment of pa ents with Amyotrophic Lateral Sclerosis (ALS) and their caregivers. Revalida e Advies Centra Neuromusculaire Aandoeningen Spierziekten Nederland. Baarn. [oral] Onderzoek ALS Hulpmiddelen. ALS Centrum Nederland. UMC Utrecht [oral] 156
6 De meerwaarde van intensieve zorg coaching in de behandeling en begeleiding van pa ënten met Amyotrofische Laterale Sclerose (ALS). Projectleidersbijeenkomst Programma Pallia eve Zorg ZonMw. Den Haag. [oral] Een zorgcoach voor mensen met ALS. Landelijke Wetenschappelijke bijeenkomst ALS Centrum Nederland. UMC Utrecht. [oral] Zorgcoach onderzoek Revalida e Advies Centra Neuromusculaire Aandoeningen Spierziekten Nederland. Baarn. [oral] De meerwaarde van intensieve zorg coaching in de behandeling en begeleiding van pa ënten met Amyotrofische Laterale Sclerose (ALS). 2 e Na onaal Congres Pallia eve Zorg. ZonMw sessie Programma Pallia eve Zorg. Lunteren. [oral] To improve living with ALS/MND: the provision of assis ve devices and environmental adapta ons. 19 th Interna onal Symposium on ALS/ MND. Birmingham, United Kingdom. [poster] Zorgcoach onderzoek. Research bespreking Afdeling Revalida e. AMC Amsterdam. [oral] De ALS Zorgcoach; een meerwaarde in de ALS zorg?. Regionale Refereerbijeenkomsten Revalida eafdelingen regio Noord-Holland. AMC Amsterdam. [oral] De ALS Zorgcoach; een meerwaarde in de ALS zorg?. S ch ng Revalida e Ziekenhuizen Noord-Holland. Medisch Centrum Alkmaar. [oral] De ALS Zorgcoach; een meerwaarde in de ALS zorg?. Afdeling Neurologie UMCG. UMC Groningen. [oral] Zorgcoach onderzoek. Research bespreking Afdeling Revalida e. AMC Amsterdam. [oral] De meerwaarde van intensieve zorg coaching van pa ënten met Amyotrofische Laterale Sclerose (ALS). Projectleidersbijeenkomst Pallia eve Zorg ZonMw. Den Haag. [oral] De meerwaarde van intensieve zorg coaching van pa ënten met Amyotrofische Laterale Sclerose (ALS). 3 e Na onaal congres Pallia eve Zorg. ZonMw sessie Programma Pallia eve Zorg. Lunteren. [oral] Zorgcoach onderzoek. Revalida e Advies Centra Neuromusculaire Aandoeningen Spierziekten Nederland. Baarn. [oral] Het zorgcoach onderzoek. Landelijke Wetenschappelijke bijeenkomst ALS Centrum Nederland. RadboudUMC. Nijmegen. [oral] Het zorgcoach onderzoek. Research bespreking Afdeling Revalida e AMC. Amsterdam. [oral] Pa ents and Caregivers Perspec ve on Case Management in ALS Care. 22 nd Interna onal Symposium on ALS/MND in Sydney, Australia. [poster] A Randomized Controlled Trial on the Effect of Case Management on Pa ents Quality of Life and Caregiver burden in ALS. 22 nd Interna onal Symposium on ALS/MND in Sydney, Australia. [poster] / / / / / / / / / / / 0.5 De meerwaarde van intensieve zorg coaching in de behandeling en begeleiding van pa ënten met Amyotrofische Laterale Sclerose (ALS). Projectleidersbijeenkomst Programma Pallia eve Zorg ZonMw. Utrecht. [oral] CV /P 157
7 De meerwaarde van intensieve zorg coaching in de behandeling en begeleiding van pa ënten met Amyotrofische Laterale Sclerose (ALS). Presenta e eindrapportage ZonMw. Utrecht. [oral] Does case management improve quality of ALS care in the Netherlands?. Annual Congress 2012 of the Netherlands Society of Physical and Rehabilita on Medicine in Noordwijkerhout, the Netherlands. [oral] Het zorgcoach onderzoek. Research bespreking Afdeling Revalida e AMC Amsterdam. [oral] De meerwaarde van intensieve zorg coaching in de behandeling en begeleiding van pa ënten met Amyotrofische Laterale Sclerose (ALS). Spierziektecongres door Spierziekten Nederland en het Beatrix Spierfonds. Veldhoven. [poster] Zorgcoaching; ervaringen van pa ënten met ALS en hun mantelzorgers. Spierziektecongres door Spierziekten Nederland en het Beatrix Spierfonds. Veldhoven. [poster] Case management as an adjunct to mul disciplinary ALS care in the Netherlands; a mixed methods approach. Wetenschappelijke bijeenkomst ALS Centrum Nederland, AMC Amsterdam. [oral] Het zorgcoach onderzoek Bijeenkomst Landelijke Werkgroep nurse prac oners NMA, UMC Utrecht. [oral] Case management as an adjunct to mul disciplinary care for ALS pa ents and their primary caregivers in the Netherlands: no effect on quality of life or caregiver strain. 23 rd Interna onal Symposium on ALS/ MND Symposium in Chicago, USA. [oral] Mul disciplinaire ALS Zorg; kan het beter?. Landelijk mul disciplinair symposium ALS Centrum Nederland. Utrecht. [oral] Ervaringen van mensen met ALS, hun naasten en professionals met de zorgcoach. Spierziektecongres door Spierziekten Nederland en het Beatrix Spierfond. Veldhoven. [poster] Zorgcoaching bij ALS Regionale Refereeravonden Revalida egeneeskunde. AMC Amsterdam. [oral] Overbelas ng van mantelzorgers van mensen met ALS. Spierziektecongres door Spierziekten Nederland en het Beatrix Spierfonds. Veldhoven. [poster] / / / / 0.5 Prognos c factors for the course of func onal status of pa ents with / 0.5 ALS: a systema c review. 25 th Interna onal Symposium on ALS/MND in Brussels, Belgium. [poster] Factors related to caregiver strain in ALS. Research bespreking Afdeling Revalida e AMC Amsterdam. [oral] Overbelas ng van mantelzorgers met ALS. Major Donor Dag ALS Centrum Nederland en S ch ng ALS Centrum Nederland. UMC Utrecht. [oral] Overbelas ng van mantelzorgers met ALS. Open Dag ALS Centrum Nederland. UMC Utrecht. [oral] (INTER-)NATIONAL CONFERENCES 19 th Interna onal Symposium on ALS/MND in Birmingham, United Kingdom / / / /
8 6 st Annual Allied Professionals Forum on ALS/MND in Birmingham, / 0.2 United Kingdom. 21 st Interna onal Symposium on ALS/MND in Orlando, USA / th Annual Allied Professionals Forum on ALS/MND in Orlando, USA / nd Interna onal Symposium on ALS/MND in Sydney, Australia / th Annual Allied Professionals Forum on ALS/MND in Sydney, Australia / rd Interna onal Symposium on ALS/MND in Chicago, USA / th Annual Allied Professionals Forum on ALS/MND in Chicago, USA / th Interna onal Symposium on ALS/MND in Brussels, Belgium / th Annual Allied Professionals Forum on ALS/MND in Brussels, / 0.2 Belgium. 2 nd European polio conference, June 25 27, 2014, Amsterdam, the / 0.9 Netherlands. OTHER Deelname ZonMw project De pa ënt als informa edrager / 0.2 Spierziekten Nederland. Baarn. AMC Spinoza Master Class Gordon Gya. Meaningful change in quality / 0.7 of life scores: can it be assessed in pa ents with amyotrophic lateral sclerosis? Department of Medical Psychology, AMC Amsterdam. [oral] Deelname ALS Kennispla orm ALS Centrum Nederland en S ch ng ALS Centrum Nederland. UMC Utrecht. De ervaringen met mantelzorg jdens het zorgcoach onderzoek. Bijdrage Contact op Maat t.b.v. leden met ALS/HSP/PSMA/PLS van Spierziekten Nederland. Project zorgcoach bij ALS. Bijdrage Contact op Maat t.b.v. leden met ALS/HSP/PSMA/PLS van Spierziekten Nederland. Deelname Onderzoek Netwerk Ergotherapie voor de regio Amsterdam (ONE-Amsterdam) periode Amsterdam. Pa ents, caregivers and professionals perspec ves on case management in ALS. 24 th Interna onal Symposium on ALS/MND in Milan, Italy. [poster] Factors related to strain experienced by caregivers of pa ents with ALS. 9 th World congress of the Interna onal Society of Physical and Rehabilita on Medicine. June Berlin, Germany. [poster] Belas ng van mantelzorgers van mensen met ALS. Spierziektecongres door Spierziekten Nederland en het Beatrix Spierfonds, september Veldhoven. [poster] / / / / / / / 0.2 CV /P 159
9 List of publica ons 160
10 List of publica ons LIST OF PUBLICATIONS / PEER REVIEWED JOURNALS 1. The provision of assis ve devices and home adapta ons to pa ents with ALS in the Netherlands: pa ents perspec ves. Creemers H, Beelen A, Grupstra H, Nollet F, van den Berg LH. Amyotroph Lateral Scler Frontotemporal Degener Sep;15(5-6): This is the authors accepted manuscript of an ar cle published as the version of record in Amyotrophic Lateral Sclerosis and Frontotemporal Degenera on The final publica on is available at the Taylor & Francis Group via h p://dx.doi.org/ / Cluster RCT of case management on pa ents quality of life and caregiver strain in ALS. Creemers H, Veldink JH, Grupstra H, Nollet F, Beelen A, van den Berg LH. Neurology Jan 7;82(1): The final publica on is available at Wolters Kluwer Health via h p:// org/content/82/1/23.full.pdf+html 3. Need and value of case management in mul disciplinary ALS care: A qualita ve study on the perspec ves of pa ents, spousal caregivers and professionals. Bakker M, Creemers H, Schipper K, Beelen A, Grupstra H, Nollet F, Abma T. Amyotroph Lateral Scler Frontotemporal Degener Jun;16(3-4): This is the authors accepted manuscript of an ar cle published as the version of record in Amyotrophic Lateral Sclerosis and Frontotemporal Degenera on The final publica on is available at the Taylor & Francis Group via h p://dx.doi.org/ / Prognos c factors for the course of func onal status of pa ents with ALS: a systema c review. Creemers H, Grupstra H, Nollet F, van den Berg LH, Beelen A. Prognos c factors for the course of func onal status of pa ents with ALS: a systema c review. J Neurol Jun;262(6): The final publica on is available at Springer via h p://dx.doi.org/ /s Factors related to caregiver strain in ALS: a longitudinal study. Creemers H, de Morée S, Veldink JH, Nollet N, van den Berg LH, Anita Beelen. J Neurol Neurosurg Psychiatry Sep 4. doi: /jnnp [Epub ahead of print] The final publica on is available at the BMJ Publishing Group Ltd via h p://jnnp.bmj. com/content/early/2015/09/04/jnnp L 161
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