Patient participation in patients with heart failure receiving structured home care - a prospective longitudinal study

BMC Health Services Research

Anna Strömberg¹  Kristofer Årestedt⁵  Ewa Idvall²  Tiny Jaarsma³  Lena Näsström⁴ 

[1] Department of Medical and Health Sciences, Linköping University, and Department of Cardiology, County Council of Östergötland, Linköping, Sweden;Department of Care Science, Malmö University, and Department of Intensive Care and Perioperative Medicine, Skåne University Hospital, Malmö, Sweden;Department of Social and Welfare studies, Linköping University, Norrköping, Sweden;Department of Medical and Health Sciences, Linköping University, Linköping 581 85, Sweden;Department of Medical and Health Sciences, Linköping University, Linköping, Sweden

关键词: Social support;    Self-care;    Patient participation;    Patient involvement;    Patient education;    Multi-disciplinary care;    Home care services;    Heart failure;   

Others  :  1090022
DOI  :  10.1186/s12913-014-0633-y

 received in 2014-04-23, accepted in 2014-12-03,  发布年份 2014

【 摘 要 】

Background

Patient participation is important for improving outcomes, respect for self-determination and legal aspects in care. However, how patients with heart failure view participation and which factors may be associated with participation is not known. The aim of this study was therefore to describe the influence of structured home care on patient participation over time in patients diagnosed with heart failure, and to explore factors associated with participation in care.

Methods

The study had a prospective pre-post longitudinal design evaluating the influence of structured home care on participation in patients at four different home care units. Patient participation was measured using 3 scales and 1 single item. Self-care behavior, knowledge, symptoms of depression, socio- demographic and clinical characteristics were measured to explore factors associated with patient participation. Repeated measure ANOVA was used to describe change over time, and stepwise regression analyses were used to explore factors associated with patient participation.

Results

One hundred patients receiving structured heart failure home care were included. Mean age was 82 years, 38 were women and 80 were in New York Heart Association functional class III. One aspect of participation, received information, showed a significant change over time and had increased at both six and twelve months. Better self-care behavior was associated with all four scales measuring different aspects of participation. Experiencing lower degree of symptoms of depression, having better knowledge, being of male sex, being of lower age, cohabiting and having home help services were associated with one or two of the four scales measuring different aspects of participation.

Conclusion

Patients experienced a fairly high level of satisfaction with participation in care at baseline, and there was a significant improvement over time for participation with regard to received information after being admitted to structured home care. Higher level of patient participation was consistently associated with better self-care behavior. This study shows that patient participation may need to be further focused upon, and that the association with self-care may be interesting to target in future interventions.

【 授权许可】

   
2014 Näsström et al.; licensee BioMed Central.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Sahlsten MJ, Larsson IE, Sjostrom B, Plos KA: An analysis of the concept of patient participation. Nurs Forum 2008, 43(1):2-11.
• [2]Patient Self Determination Act of 1990. Available at: http://thomas.loc.gov/cgi-bin/query/C?c101:./temp/~c101anu0Pk. Accessed December 2, 2013.
• [3]Ministry of Health and Social Affairs: Health and Medical Services Act 1982:763. In. Available at: http://www.notisum.se/rnp/sls/lag/19820763.htm. Accessed December 2, 2013; 1982.
• [4]Riegel B, Jaarsma T, Stromberg A: A middle-range theory of self-care of chronic illness. ANS Adv Nurs Sci 2012, 35(3):194-204.
• [5]Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A: Improving chronic illness care: translating evidence into action. Health Aff (Millwood) 2001, 20(6):64-78.
• [6]Go AS, Mozaffarian D, Roger VL, Benjamin EJ, Berry JD, Borden WB, Bravata DM, Dai S, Ford ES, Fox CS, Franco S, Fullerton HJ, Gillespie C, Hailpern SM, Heit JA, Howard VJ, Huffman MD, Kissela BM, Kittner SJ, Lackland DT, Lichtman JH, Lisabeth LD, Magid D, Marcus GM, Marelli A, Matchar DB, McGuire DK, Mohler ER, Moy CS, Mussolino ME, et al.: Heart disease and stroke statistics–2013 update: a report from the American Heart Association. Circulation 2013, 127(1):e6-e245.
• [7]McMurray JJ, Adamopoulos S, Anker SD, Auricchio A, Bohm M, Dickstein K, Falk V, Filippatos G, Fonseca C, Gomez-Sanchez MA, Jaarsma T, Kober L, Lip GY, Maggioni AP, Parkhomenko A, Pieske BM, Popescu BA, Ronnevik PK, Rutten FH, Schwitter J, Seferovic P, Stepinska J, Trindade PT, Voors AA, Zannad F, Zeiher A, Bax JJ, Baumgartner H, Ceconi C, Dean V, et al.: ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: the task force for the diagnosis and treatment of acute and chronic heart failure 2012 of the European society of cardiology. Developed in collaboration with the heart failure association (HFA) of the ESC. Eur J Heart Fail 2012, 14(8):803-869.
• [8]Genet N, Boerma WG, Kringos DS, Bouman A, Francke AL, Fagerstrom C, Melchiorre MG, Greco C, Deville W: Home care in Europe: a systematic literature review. BMC Health Serv Res 2011, 11:207. BioMed Central Full Text
• [9]Madigan EA: People with heart failure and home health care resource use and outcomes. J Clin Nurs 2008, 17(7B):253-259.
• [10]Blue L, Lang E, McMurray JJ, Davie AP, McDonagh TA, Murdoch DR, Petrie MC, Connolly E, Norrie J, Round CE, Ford I, Morrison CE: Randomised controlled trial of specialist nurse intervention in heart failure. BMJ 2001, 323(7315):715-718.
• [11]Stewart S, Horowitz JD: Home-based intervention in congestive heart failure: long-term implications on readmission and survival. Circulation 2002, 105(24):2861-2866.
• [12]Stewart S, Carrington MJ, Marwick TH, Davidson PM, Macdonald P, Horowitz JD, Krum H, Newton PJ, Reid C, Chan YK, Scuffham PA: Impact of home versus clinic-based management of chronic heart failure: the WHICH? (which heart failure intervention is most cost-effective & consumer friendly in reducing hospital care) multicenter, randomized trial. J Am Coll Cardiol 2012, 60(14):1239-1248.
• [13]Whitty JA, Carrington MJ, Stewart S, Holliday J, Marwick TH, Scuffham PA: Patient preferences for the delivery of disease management in chronic heart failure: a qualitative study. J Cardiovasc Nurs 2012, 27(3):201-207.
• [14]International Classification of Functioning, Disability and Health (ICF) 2001. [http://www.who.int/classifications/icf/en/. Accessed December 2, 2013].
• [15]Cahill J: Patient participation: a concept analysis. J Adv Nurs 1996, 24(3):561-571.
• [16]Eldh AC, Ekman I, Ehnfors M: A comparison of the concept of patient participation and patients’ descriptions as related to healthcare definitions. Int J Nurs Terminol Classif 2010, 21(1):21-32.
• [17]Ekdahl AW, Andersson L, Wirehn AB, Friedrichsen M: Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised? A cross-sectional survey. BMC Geriatr 2011, 11:46. BioMed Central Full Text
• [18]Sainio C, Eriksson E, Lauri S: Patient participation in decision making about care. Cancer Nurs 2001, 24(3):172-179.
• [19]Thompson AG: The meaning of patient involvement and participation in health care consultations: a taxonomy. Soc Sci Med 2007, 64(6):1297-1310.
• [20]Eldh AC, Ehnfors M, Ekman I: The phenomena of participation and non-participation in health care–experiences of patients attending a nurse-led clinic for chronic heart failure. Eur J Cardiovasc Nurs 2004, 3(3):239-246.
• [21]Nasstrom LM, Idvall EA, Stromberg AE: Heart failure patients’ descriptions of participation in structured home care. [published online ahead of print August 21, 2013].Health Expect 2013. doi:10.1111/hex.12120.
• [22]Greenfield S, Kaplan SH, Ware JE Jr, Yano EM, Frank HJ: Patients’ participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med 1988, 3(5):448-457.
• [23]Rachmani R, Levi Z, Slavachevski I, Avin M, Ravid M: Teaching patients to monitor their risk factors retards the progression of vascular complications in high-risk patients with Type 2 diabetes mellitus–a randomized prospective study. Diabet Med 2002, 19(5):385-392.
• [24]Arnetz J, Almin K, Bergström Y, Franzen Y, Nilsson H: Active patient involvement in the establishment of physical therapy goals: effects on treatment outcome and quality of care. Adv Physiother 2004, 6:50-69.
• [25]Loh A, Leonhart R, Wills CE, Simon D, Harter M: The impact of patient participation on adherence and clinical outcome in primary care of depression. Patient Educ Couns 2007, 65(1):69-78.
• [26]Evangelista LS, Shinnick MA: What do we know about adherence and self-care? J Cardiovasc Nurs 2008, 23(3):250-257.
• [27]Lee CS, Moser DK, Lennie TA, Riegel B: Event-free survival in adults with heart failure who engage in self-care management. Heart Lung 2011, 40(1):12-20.
• [28]Riegel B, Dickson VV: A situation-specific theory of heart failure self-care. J Cardiovasc Nurs 2008, 23(3):190-196.
• [29]Riegel B, Lee CS, Dickson VV: Self care in patients with chronic heart failure. Nat Rev Cardiol 2011, 8(11):644-654.
• [30]Riegel B, Vaughan Dickson V, Goldberg LR, Deatrick JA: Factors associated with the development of expertise in heart failure self-care. Nurs Res 2007, 56(4):235-243.
• [31]Stromberg A: The crucial role of patient education in heart failure. Eur J Heart Fail 2005, 7(3):363-369.
• [32]Carlson B, Riegel B, Moser DK: Self-care abilities of patients with heart failure. Heart Lung 2001, 30(5):351-359.
• [33]Patel H, Shafazand M, Schaufelberger M, Ekman I: Reasons for seeking acute care in chronic heart failure. Eur J Heart Fail 2007, 9(6–7):702-708.
• [34]van der Wal MH, Jaarsma T, Moser DK, Veeger NJ, Van Gilst WH, Van Veldhuisen DJ: Compliance in heart failure patients: the importance of knowledge and beliefs. Eur Heart J 2006, 27(4):434-440.
• [35]Adams J, Kuchibhatla M, Christopher EJ, Alexander JD, Clary GL, Cuffe MS, Califf RM, Krishnan RR, O'Connor CM, Jiang W: Association of depression and survival in patients with chronic heart failure over 12 Years. Psychosomatics 2012, 53(4):339-346.
• [36]Eastwood JA, Moser DK, Riegel BJ, Albert NM, Pressler S, Chung ML, Dunbar S, Wu JR, Lennie TA: Commonalities and differences in correlates of depressive symptoms in men and women with heart failure. Eur J Cardiovasc Nurs 2012, 11(3):356-365.
• [37]Arnetz JE, Arnetz BB: Gender differences in patient perceptions of involvement in myocardial infarction care. Eur J Cardiovasc Nurs 2009, 8(3):174-181.
• [38]Florin J, Ehrenberg A, Ehnfors M: Clinical decision-making: predictors of patient participation in nursing care. J Clin Nurs 2008, 17(21):2935-2944.
• [39]Say R, Murtagh M, Thomson R: Patients’ preference for involvement in medical decision making: a narrative review. Patient Educ Couns 2006, 60(2):102-114.
• [40]Stewart DE, Abbey SE, Shnek ZM, Irvine J, Grace SL: Gender differences in health information needs and decisional preferences in patients recovering from an acute ischemic coronary event. Psychosom Med 2004, 66(1):42-48.
• [41]Wilkinson C, Khanji M, Cotter PE, Dunne O, O'Keeffe ST: Preferences of acutely ill patients for participation in medical decision-making. Qual Saf Health Care 2008, 17(2):97-100.
• [42]Hubbard G, Kidd L, Donaghy E: Preferences for involvement in treatment decision making of patients with cancer: a review of the literature. Eur J Oncol Nurs 2008, 12(4):299-318.
• [43]Jaarsma T, Strömberg A: HOMECARE. Clinical Continuity by Integrated Care. Grant Agreement No. 222954. A description of EU-criteria/components for optimal based managment of heart failure patients 2010. In. vol. 2013. www.integratedhomecare.eu. Accessed September 13, 2013.
• [44]Charlson ME, Pompei P, Ales KL, MacKenzie CR: A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 1987, 40(5):373-383.
• [45]Arnetz JE, Hoglund AT, Arnetz BB, Winblad U: Development and evaluation of a questionnaire for measuring patient views of involvement in myocardial infarction care. Eur J Cardiovasc Nurs 2008, 7(3):229-238.
• [46]Jaarsma T, Arestedt KF, Martensson J, Dracup K, Stromberg A: The European heart failure self-care behaviour scale revised into a nine-item scale (EHFScB-9): a reliable and valid international instrument. Eur J Heart Fail 2009, 11(1):99-105.
• [47]van der Wal MH, Jaarsma T, Moser DK, Van Veldhuisen DJ: Development and testing of the Dutch heart failure knowledge scale. Eur J Cardiovasc Nurs 2005, 4(4):273-277.
• [48]Spitzer RL, Kroenke K, Williams JB: Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Primary care evaluation of mental disorders. Patient health questionnaire. JAMA 1999, 282(18):1737-1744.
• [49]Kroenke K, Spitzer RL, Williams JB: The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001, 16(9):606-613.
• [50]Hammash MH, Hall LA, Lennie TA, Heo S, Chung ML, Lee KS, Moser DK: Psychometrics of the PHQ-9 as a measure of depressive symptoms in patients with heart failure. Eur J Cardiovasc Nurs 2013, 12(5):446-453.
• [51]Weinfurt KP: Repeated measure analysis: ANOVA, MANOVA, and HLM. In Reading and Understanding MORE Multivariate Statistics. Edited by Grimm L, Yarnold PR. American Psychological Association, Washington, DC; 2000:317-361.
• [52]Miles J, Shevlin M: Applying Regression and Correlation: A Guide for Students and Researchers. Sage Publications Inc, Thousand Oaks; 2001.
• [53]Swedish Association of Local Authorities and Regions: The National Patient Survey 2012. In. http://npe.skl.se/Default.aspx. Accessed October 21, 2013.
• [54]Ashworth PD, Longmate MA, Morrison P: Patient participation: its meaning and significance in the context of caring. J Adv Nurs 1992, 17(12):1430-1439.
• [55]Boyde M, Turner C, Thompson DR, Stewart S: Educational interventions for patients with heart failure: a systematic review of randomized controlled trials. J Cardiovasc Nurs 2011, 26(4):E27-E35.
• [56]Dekker RL: Patient perspectives about depressive symptoms in heart failure: a review of the qualitative literature. J Cardiovasc Nurs 2014, 29(1):E9-E15.
• [57]Holzapfel N, Lowe B, Wild B, Schellberg D, Zugck C, Remppis A, Katus HA, Haass M, Rauch B, Junger J, Herzog W, Muller-Tasch T: Self-care and depression in patients with chronic heart failure. Heart Lung 2009, 38(5):392-397.
• [58]Tambuyzer E, Van Audenhove C: Is perceived patient involvement in mental health care associated with satisfaction and empowerment? [published online ahead of print February 21, 2013]. Health Expect 2013.
• [59]Zambroski CH, Buck H, Garrison CM, McMillan SC: Lessons from the field: challenges in accruing hospice heart failure patients to intervention research. J Cardiovasc Nurs 2014, 29(1):91-97.
• [60]Cohen J: Statsitical Power Analysis for the Behavioral Sciences. Academic press, New York; 1977.
• [61]Cohen J: Statsitical Power Analysis for the Behavioral Sciences. 2nd edition. Erlbaum, Hillsdale, NJ; 1988.
• [62]Zarrinkoub R, Wettermark B, Wandell P, Mejhert M, Szulkin R, Ljunggren G, Kahan T: The epidemiology of heart failure, based on data for 2.1 million inhabitants in Sweden. Eur J Heart Fail 2013, 15(9):995-1002.
• [63]Streiner D, Norman G: Health Measurement Scales a Practical Guide to Development and Use. 3rd edition. Oxford University Press, Oxford; 2003.
• [64]Knapp TR: Treating ordinal scales as interval scales: an attempt to resolve the controversy. Nurs Res 1990, 39(2):121-123.