Chronic Disease Management Programmes: an adequate response to patients’ needs?
Nienke Bekkema MA
PhD student, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorPauline Boeckxstaens MD
PhD student, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Search for more papers by this authorFrançois G. Schellevis MD PhD
Professor, Department of General Practice, EMGO Institute for Health and Care Research, VU University Medical Centre, Amsterdam, the Netherlands
Head of research department, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorJan M. De Maeseneer MD PhD
Professor, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Search for more papers by this authorPeter P. Groenewegen PhD
Professor, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Director, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorNienke Bekkema MA
PhD student, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorPauline Boeckxstaens MD
PhD student, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Search for more papers by this authorFrançois G. Schellevis MD PhD
Professor, Department of General Practice, EMGO Institute for Health and Care Research, VU University Medical Centre, Amsterdam, the Netherlands
Head of research department, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorJan M. De Maeseneer MD PhD
Professor, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Search for more papers by this authorPeter P. Groenewegen PhD
Professor, Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Director, Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands
Search for more papers by this authorAbstract
Background Inspired by American examples, several European countries are now developing disease management programmes (DMPs) to improve the quality of care for patients with chronic diseases. Recently, questions have been raised whether the disease management approach is appropriate to respond to patient-defined needs.
Objective In this article we consider the responsiveness of current European DMPs to patients’ needs defined in terms of multimorbidity, functional and participation problems, and self-management.
Method Information about existing DMPs was derived from a survey among country-experts. In addition, we made use of international scientific literature.
Results Most European DMPs do not have a solid answer yet to the problem of multimorbidity. Methods of linking DMPs, building extra modules to deal with the most prevalent comorbidities and integration of case management principles are introduced. Rehabilitation, psychosocial and reintegration support are not included in all DMPs, and the involvement of the social environment of the patient is uncommon. Interventions tailored to the needs of specific social or cultural patient groups are mostly not available. Few DMPs provide access to individualized patient information to strengthen self-management, including active engagement in decision making.
Conclusion To further improve the responsiveness of DMPs to patients’ needs, we suggest to monitor ‘patient relevant outcomes’ that might be based on the ICF-model. To address the needs of patients with multimorbidity, we propose a generic comprehensive model, embedded in primary care. A goal-oriented approach provides the opportunity to prioritize goals that really matter to patients.
References
- 1 TNS Opinion & Social . Health in the European Union , Special Eurobarometer 272e . Brussels : European Commission , 2007 .
- 2 European Statistics of Income and Living Conditions . Eurostat (Statistical database of the European Union ), 2009 .
- 3 van Weel C , Schellevis FG . Comorbidity and guidelines: conflicting interests [Comment] . Lancet , 2006 ; 367 : 550 – 551 .
- 4 Caughey GE , Vitry AI , Gilbert AL , Roughead EE . Prevalence of comorbidity of chronic diseases in Australia . BMC Public Health , 2008 ; 8 : 221 .
- 5 Rijken M , van Kerkhof M , Dekker J , Schellevis FG . Comorbidity of chronic diseases. Effects of disease pairs on physical and mental functioning . Quality of Life Research , 2005 ; 14 : 45 – 55 .
- 6 Hoeymans N , Schellevis FG , Wolters I . Hoeveel mensen hebben één of meer chronische ziekten? In: Volksgezondheid Toekomst Verkenning, Nationaal Kompas Volksgezondheid. The Netherlands, Bilthoven : 2008 .
- 7 Nolte E , McKee M , Knai C ( eds ). Managing chronic conditions: an introduction to the experience in eight countries . In: Managing chronic conditions. Experience in eight countries. Observatory Studies Series no 15. European Observatory on Health Systems and Policies , 2008 .
- 8 Mold JW , Blake GH , Becker LA . Goal-oriented medical care . Family Medicine , 1991 ; 23 : 46 – 51 .
- 9 Boeckxstaens P , Bekaert S , De Sutter A , De Maeseneer J . Translational research and multimorbidity: a need for a paradigm-shift . International Public Health Journal , 2011 ; 3 : 207 – 214 .
- 10 Wagner EH , Austin BT , Von Korff M . Organizing Care for Patients with Chronic Illness . Milbank Quarterly , 1996 ; 74 : 511 – 544 .
- 11 Wagner EH , Austin BT , Davis C , Hindmarsh M , Schaefer J , Bonomi A . Improving chronic illness care: translating evidence into action . Health Affairs , 2001 ; 20 : 64 – 78 .
- 12 Bodenheimer T , Wagner EH , Grumbach K . Improving primary care for patients with chronic illness . JAMA , 2002 ; 288 : 1775 – 1779 .
- 13 Zitter M . A new paradigm in health care delivery: disease management . In : WE Todd , D Nash ( eds ) Disease Management: A Systems Approach to Improving Patient Outcomes . Chicago : American Hospital Association , 1997 : 1 – 25 .
- 14 Weingarten SR , Henning JM , Badamgarav E et al. Interventions used in disease management programmes for patients with chronic illness – which ones work? Meta-analysis of published reports British Medical Journal , 2002 ; 325 : 925 .
- 15 Faxon DP , Schwamm LH , Pasternak RC et al. Improving quality of care through disease management: principles and recommendations from the American Heart Association’s Expert Panel on Disease Management . Circulation , 2004 ; 109 : 2651 – 2654 .
- 16 DMAA: The Care Continuum Alliance . DMAA Definition of Disease Management , 2006 . Available from: http://www.dmaa.org/dm_definition.asp, accessed 24 June 2010 .
- 17
Schrijvers G
.
Disease management: a proposal for a new definition
.
International Journal of Integrated Care
,
2009
;
9
:
1
–
3
.
10.5334/ijic.301 Google Scholar
- 18 Greß S , Baan CA , Calnan M et al. Co-ordination and management of chronic conditions in Europe: the role of primary care – position paper of the European Forum for Primary Care . Quality in Primary Care , 2009 ; 17 : 75 – 86 .
- 19 Ritchie C . Health care quality and multimorbidity. The jury is still out . Medical Care , 2007 ; 45 : 477 – 479 .
- 20 Boyd CM , Darer J , Boult C , Fried LP , Boult L , Wu AW . Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases. Implications for pay for performance . JAMA , 2005 ; 294 : 716 – 724 .
- 21 De Maeseneer JM , van Driel ML , Green LA , van Weel C . The need for research in primary care . The Lancet , 2003 ; 362 : 1314 – 1319 .
- 22 Leys M . A Social Science Perspective on Care for Chronically Ill People. Relevance for Public Health and Healthcare Policy Making . Brussels : Vrije Universiteit Brussel , October 2010 .
- 23 de Klerk M . Aantal mensen met beperkingen en/of chronische ziekten. [Number of people with disability and/or chronic conditions.] In : Klerk MMY de. Rapportage gehandicapten 2000. Arbeidsmarktpositie en financiële situatie van mensen met beperkingen en/of chronische ziekten. [Report on disabled people 2000. Labour market position and financial situation of people with disability and/or chronic conditions.] The Hague : Netherlands institute for social research , 2000 .
- 24 Heijmans M , Spreeuwenberg P , Rijken M . Ontwikkelingen in de zorg voor chronisch zieken. Rapportage 2010 [Developments in chronic care. Report 2010] . Utrecht : NIVEL , 2010 .
- 25 Von Korff M , Gruman J , Schaefer J , Curry SJ , Wagner EH . Collaborative management of chronic illness . Annals of Internal Medicine , 1997 ; 127 : 1097 – 1102 .
- 26 Heijmans M , Foets M , Rijken M , Schreurs K , de Ridder D , Bensing J . Stress in chronic disease: do the perceptions of patients and their general practitioners match? British Journal of Health Psychology , 2001 ; 6 : 229 – 242 .
- 27 Lorig K . Self-management of chronic illness: a model for the future . Generations , 1993 ; 17 : 11 – 14 .
- 28 Lorig K , Holman H . Arthritis self-management studies: a twelve-year review . Health Education Quarterly , 1993 ; 20 : 17 – 28 .
- 29 Rijken M , Jones M , Heijmans M , Dixon A . Supporting self-management . In : E Nolte , M McKee ( eds ) Caring for People with Chronic Conditions. A Health System Perspective. European Observatory on Health Systems and Policies Series . Berkshire, UK : Open University Press , 2008 : 116 – 142 .
- 30 National Primary Care Research and Development Centre . WISE. Whole System Informing Self-management Engagement . NPCRDC, University of Manchester , 2008 .
- 31 Rijken M , Bekkema N . Chronic Disease Management Matrix 2010. Results of a Survey in Ten European Countries . Utrecht, The Netherlands : NIVEL , 2011 .
- 32 van Schilfgaarde R . Implementation of the ‘Standard of diabetes care’: the approach in The Netherlands . Presentation at the Health Executive Summit in Paris, May 19–21, 2010 (presentation can be downloaded from http://www.zonmw.nl, programme disease management, accessed 14 December 2010 ).
- 33 Steultjens MP , Dekker J , Bijlsma JW . Avoidance of activity and disability in patients with osteoarthritis of the knee: the mediating role of muscle strength . Rheumatoid Arthritis , 2002 ; 46 : 1784 – 1788 .
- 34 Barr VJ , Robinson S , Marin-Link B et al. The Expanded Chronic Care Model: an integration of concepts and strategies from population health promotion and the Chronic Care Model . Hospital Quarterly , 2003 ; 7 : 73 – 82 .
- 35 Jadad AR , Cabrera A , Lyons RF , Martos F , Smith R ( eds ) When People Live with Multiple Chronic Diseases: A Collaborative Approach to an Emerging Global Challenge . Granada : Escuela Andaluze de Salud Pŭblica (Andalusian School of Public Health) , 2010 .
- 36 Chen A , Brown R , Archival N , Aliotta S , Fox PD . Best Practices and Coordinated Care . Princeton, NJ : Mathematica Policy Research , 2000 .
- 37 Department of Health . Our health, our care, our say: a new direction for community services . White paper. UK department of Health, January 2006 .
- 38 National Health Service . High Quality Care for All. NHS Next Stage Review – Final Report . London : NHS , 2008 .
- 39 Damman OC , Stubbe JH , Triemstra AHM , Spreeuwenberg P , Delnoij DMJ . Comparative health care information: consumer quality index (CQI) information on differences between providers . European Journal of Public Health , 2007 ; 17 ( 2 Suppl ): 34 .
- 40 Kerssens JJ , Groenewegen PP , Sixma HJ , Boerma WGW , van der Eijk I . Exploration of patient evaluations of health care quality in 12 different European countries in relation to health system performance . European Journal of Public Health , 2003 ; 13 ( 4 Suppl ): 77 .
- 41 World Health Organization . International Classification of Functioning, Disability and Health: ICF . Geneva : WHO , 2001 .
- 42 Tinetti ME , McAvay G , Chang SS et al. Effect of chronic disease-related symptoms and impairments on universal health outcomes in older adults . Journal of the American Geriatrics Society , 2011 ; 59 : 1618 – 1627 .
- 43 Glasgow RE , Wagner EH , Schaefer J , Mahoney LD , Reid RJ , Greene SM . Development and validation of the Patient Assessment of Chronic Illness Care (PACIC) . Medical Care , 2005 ; 43 : 436 – 444 .
- 44 Aragones A , Schaefer EW , Stevens D , Gourevitch MN , Glasgow RE , Shah NR . Validation of the Spanish translation of the Patient Assessment of Chronic Illness Care survey . Preventing Chronic Disease Public Health Research, Practice and Policy , 2008 ; 5 : 1 – 10 .
- 45 Wensing M , van Lieshout J , Jung HP , Hermsen J , Rosemann T . The Patients Assessment Chronic Illness Care (PACIC) questionnaire in the Netherlands: a validation study in rural general practice . BMC Health Services Research , 2008 ; 1 : 182 .
- 46 De Maesener J , Roberts RG , Demarzo M et al. Tackling NCDs: a different approach is needed . The Lancet , 2011 ; DOI: 10.1016/S0140-6736(11)61135-5 .
- 47 World Health Organization . The World Health Report 2008. Primary Health Care Now more than ever . Geneva, Switzerland : WHO , 2008 . Available from: http://www.who.int/whr/2008/whr08_en.pdf, accessed 8 September 2011 .
- 48 May C , Montori V , Mair F . We need minimally disruptive medicine . British Medical Journal , 2009 ; 339 : 485 – 487 .