Moving towards patient-centredness in fertility care: how is it achieved?

Main Article Content

Johanna WM Aarts
Marjan J Faber
Willianne LDM Nelen
Jan AM Kremer

Abstract

Fertility care mainly focuses on pregnancy rates and complications as measures for quality of care. However, high-quality fertility care should not only be effective and safe, but also patient-centred. Because of the substantial emotional and physical burden of being infertile and fertility treatments, patients benefit from care that is tailored to their individual needs. Patient-centredness takes into account what in care is important to patients. However, healthcare professionals do not always acknowledge and recognize the importance of patient-centredness as a dimension of quality of care of its own right. The last few years a series of qualitative and quantitative research explored what patient-centred fertility care encompasses according to patients, how it can be measured and where improvement is needed. Analysis determined that there are ten domains of patient-centredness: accessibility; information; communication; respect for patients’ values; continuity and transition of care; patient involvement; and competence.  Averagely, patients experienced ‘communication’ the most positively, ‘accessibility’ the least. This paper shows that in fertility care professionals are becoming increasingly aware of the relevance and need for patient-centred care. Through focus groups and the development of a measurement instrument we also know what is encompasses and what aspects need improvement. The challenge we are now facing is to achieve patient-centred care by designing and implementing interventions to improve this important dimension of quality of care.

Article Details

Section
Contributions to the advancement of person-centered care
Author Biographies

Johanna WM Aarts, Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre

MD, PhD student reproductive medicineDepartment of Obstetrics and Gynaecology

Marjan J Faber, Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB, Nijmegen, The Netherlands

PhD

Willianne LDM Nelen, Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB, Nijmegen, The Netherlands

MD, PhD

Jan AM Kremer, Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB, Nijmegen, The Netherlands

MD, PhDProfessor in reproductive medicine

References

Bensing, J. (2000). Bridging the gap. The separate worlds of evidence-based medicine and patient-centered medicine. Pat Educ Couns 39, 17-25.

Berwick DM. What ‘patient-centered’ should mean: Confessions of an extremist. Health Aff (Millwood) 2009;28: w555-65.

Clark, J. (2008). The narrative in patient-centred care. Br J Gen Pract 58, 896.

Glas, R. (1996). The patient-physician relationship. JAMA focuses on the center of medicine. J Am Med Assoc 275, 147-148.

Corrigan JM, Donaldson MS, Kohn LT, Maguire SK, Pike KC. Crossing the Quality Chas. A New Health System for the 21st Century. Washington, DC: Institute of Medicine, National Academy of Sciences, National Academy Press, 2001.

Bauman, A., Fardy, H., Harris, P. (2003). Getting it right: why bother with patient-centred care? MJA 179, 253-256.

Mead, N., Bower P. (2000). Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 51, 1087-1110.

Frampton, S., Guastello, S., Brady, C., Hale, M., Horowitz, S., Bennett, S., et al. (2008). Patient-centered care improvement guide. Report. Picker institute.

Bengoa, R., Kawar, R., Key, P., Leatherman, S., Massoud, R., Saturno, P. Quality of care: A process for making strategic choices in health systems. Geneva: World Health Organization, WHO press.

Patwardhan, A., Patwardhan, P. (2009). Are consumer surveys valuable as a service improvement tool in health services? A critical appraisal. Int J Health Care Qual Assur 22, 670-685.

Glasper, A. (2010). Does patient experience correlate to experiences of NHS staff. BJN 19, 386-387.

Stewart, M., Brown, J., Donner, A., McWhinney, I., Oates, J., Weston, W., Jordan, J. (2000). The impact of patient-centered care on outcomes. J Fam Pract 49, 796-804.

Epstein, R., Fiscella, K., Lessers, C., Stange, K. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs 29, 1489-1495.

Schmidt, L., Holstein, B., Boivin, J., Tjornhoj-Thomsen, T., Blaabjerg, J., Hald, F., Rasmussen, P., Nyboe Andersen, A. (2003). High ratings of satisfaction with fertilty treatment are common: findings from the Copenhagen Multi-centre Psychosocial Infertility (COMPI) Research Programma. Hum Reprod 18, 2638-2646.

Mourad, S., Hermens, R., Cox-Witbraad, T., Grol, R., Nelen, W., Kremer, J. (2009). Information provision in fertility care: a call for improvement. Hum Reprod 1: 1-7.

Van Empel, I., Nelen, W., Hermens, R., Kremer, J. (2008). Coming soon to your clinic:

high-quality ART. Hum Reprod 23: 1242-1245.

Zegers-Hochschild, F., Adamson, G., de Mouzon, J., Ishihara, O., Mansour, R., Nygren, K., Sullivan, E., van der Poel, S. (2009). The International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) revised glossary on ART terminology, 2009. Hum Reprod 11, 2683-2687.

Boivin, J., Bunting, L., Collins, J., Nygren, K. (2007). International estimates of infertility prevalence and treatment-seeking: potential need and demand for infertility medical care. Hum Reprod 22, 1506-1512.

Nachtigall, R. (2009). International disparities in access to infertility services. Fertil Steril 85, 871-875.

Van Asselt, K., Hinloopen, R., Silvius, A., Van der Linden, P., Van Oppen, C., Van Balen, J. (2010). [NHG Standaard Subfertiliteit]. Huisarts Wet 4, 203-214.

Verberg, M., Eijkemans, M., Heijnen, E., Broekmans, F., de Klerk, C., Fauser, B., Macklon, N. (2008). Why do couples drop-out from IVF treatment? A prospective cohort study. Hum Reprod 23, 2050-2055.

Schmidt, L. (2006). Psychosocial burden of infertility and assisted reproduction. Lancet 367, 379-380.

Verhaak, C., Smeenk J., Evers, A., Kremer, J., Kraaimaat, F., Braat, D. (2007). Women’s emotional adjustment to IVF: a systematic review of 25 years of research. Hum Reprod Update 13, 27-36.

Hammarberg, K., Astbury, J., Baker, H. (2001). Women’s experience of IVF: a follow-up study. Hum Reprod 16, 374-383.

Kjaer, T., Jensen, A., Dalton, S., Johansen, C., Schmiedel, S., Kjaer, S. (2011). Suicide in Danish women evaluated for fertility problems. Hum Reprod 26, 2401-2407.

Boivin, J., Takefman, J., Braverman, (2011). A. The Fertility Quality of Life (FertiQoL) Tool: development and general psychometric properties. Hum Reprod 26, 2084-91.

Chachamovich, J., Chachamovich, E., Ezer, H., Fleck, M., Knauth, D., Passos, E. (2010). Investigating quality of life and health-related quality of life in infertility: a systematic review. J Psychosom Obstet Gynaecol 31, 101-10.

Peterson, B., Gold, L., Feingold, T. (2007). The experiences and influence of infertility: considerations for couple counsellors. The family journal 15, 251-257.

Coeffin-Driol C, Giami A. (2004). L'impact de l'infertilitité et de ses traitements sur la vie sexuelle et la relation de couple: revue de la literature. Gynecol Obstet Fertil 32, 624-637.

Brandes, M., Hamilton, C., de Bruin, J., Nelen, W., Kremer, J. (2010). The relative contribution of IVF to the total ongoing pregnancy rate in a subfertile cohort. Hum Reprod 25, 118-126.

Collins, J., Steirteghem, A. (2004). Overall prognosis with current treatment of infertility. Hum Reprod Update 10, 309-316.

Nyboe Andersen, A., Goossens, V., Ferraretti, A., Bhattacharya, S., Felberbaum, R., de Mouzon, J., et al. (2008). Assisted reproductive technology in Europe, 2004: Results generated from European Registers by ESHRE. Hum Reprod 23, 756-771.

Brandes, M., Van der Steen, J., Bokdam, S., Hamilton, C., De Bruin, J., Nelen, W., Kremer, J. (2009). When and why do subfertile couples discontinue their fertility care? A longitudinal cohort study in a secondary care subfertility population. Hum Reprod 24, 3127-3135.

Smeenk, J., Verhaak, C., Stolwijk, A., Kremer, J., Braat, D. (2004). Reasons for dropout in an in vitro fertilization/intracytoplasmic sperm injection program. Fertil Steril 81, 262-268.

Domar, A. (2004). Impact of psychological factors on dropout rates in insured infertility patients. Fertil Steril 81: 271-273.

Olivius, C., Friden, B., Borg, G., Bergh, C. (2004). Why do couples discontinue in vitro fertilization treatment? A cohort study. Fertil Steril 81: 258-261.

Malik, S., Coulson, N. (2008). The male experience of infertility: a thematic analysis of an online infertility support group bulletin board. J Reprod Infant Psychol 26, 18-30.

Ombelet, W. (2009). Reproductive healthcare systems should include accessible infertility diagnosis and treatment: an important challenge for resource-poor countries. Int J Gynaecol Obstet 106, 168-171.

Van Empel, I., Dancet, E., Koolman, X., Nelen, W., Stolk, E., Sermeus, W., D’Hooghe, T., Kremer, J. (2011). Physicians underestimate the importance of patient-centredness to patients: a discrete choice experiment in fertility care. Hum Reprod 26, 584-593.

Marcus, H., Marcus, D., Marcus, S. (2005). How doe infertile couples choose their IVF centers? An Internet-based survey. Fertil Steril 83, 779-781.

Hendrix, M., Pavlova, M., Nieuwenhuijze, M., Severens A., Nijhuis, J. (2010). Differences in preferences for obstetrics care between nulliparae and their partners in the Netherlands: a discrete choice experiment. J Psychosom Obstet Gynaecol 31, 243-251.

Robertson, R., Burge, P. (2011). The impact of patient choice of provider on equity: analysis of a patient survey. J Health Serv Res Policy 16 Suppl, 22-28.

Kuper, A., Reeves, S., Levinson, W. (2008). An introduction to reading and appraising qualitative research on healthcare quality. BMJ 337, a288.

Wensing, M., Elwyn, G. (2003). Methods for incorporating patients’ views in health care. BMJ 326, 877-879.

Adams, S. (2011). Sourcing the crowd for health services improvement: The reflexive patient and “share-your-experience” websites. Soc Sci Med 72, 1069-1076.

Nyboe Andersen, A., Goossens, V., Bhattacharya, S., Ferraretti, A., Kupka, M., de Mouzon, J., et al. (2009). Assisted reproductive technology and intra uterine inseminations in Europe, 2005: results generated from European registers by ESHRE: ESHRE. The European IVF Monitoring Programme (EIM), for the European Society of Human Reproduction and Embryology (ESHRE). Hum Reprod 24, 1267-1287.

Min, J., Breheny, S., MacLachlan, V., Healy, D. (2004). What is the most relevant standard of success in assisted reproduction? The singleton, term gestation, live birth rate per cycle initiated: the BESST endpoint for assisted reproduction. Hum Reprod 19, 3-7.

Aarts, J., Faber, M., van Empel, I., Scheenjes, E., Nelen, W., Kremer, J. Professionals’ perceptions of their patients’ experiences. (2011). Hum Reprod 26, 1119-1127.

Malin, M., Hemminki, E., Raikkonen, O., Sihvo, S., Perala, ML. (2001). What do women want? Women’s experienes of infertility treatment. Soc Sci Med 53, 123-133.

Souter, V., Penney, G., Hopton, J., Templeteon, A. (1998). Patient satisfaction with the management of infertility. Hum Reprod 13, 1831-1836.

Redshaw, M., Hockley, C., Davidson, L. (2007). A qualitative study of the experiences of treatment for infertility among women who successfully became pregnant. Hum Reprod 22, 295-304.

Mourad, S., Nelen, W., Akkermans, R., Vollebergh, J., Grol, R., Hermens, R., Kremer, J. (2009). Determinants of patients’ experiences and satisfaction with fertility care. Fertil Steril

Van Empel, I., Nelen, W., Tepe, E., van Laarhoven, E., Verhaak, C., Kremer, J. (2010). Weaknesses, strengths and needs in fertility care according to patients. Hum Reprod 25, 142-149.

Haagen, E., Hermens, R., Nelen, W., Braat, D., Kremer, J., Grol, R. (2008). Subfertile couples’ negative experiences with intrauterine insemination care. Fertil Steril 89, 809-816.

Dancet, E., Nelen, W., Sermeus, W., De Leeuw, L., Kremer, J., D’Hooghe, T. (2010). The patients’ perspective on fertility care: a systematic review. Hum Reprod Update, 1-21.

van Peperstraten, A., Nelen, W., Hermens, R., Jansen, L., Scheenjes, E., Braat, D., Grol, R., Kremer, J. (2008). Why don’t we perform elective single embryo transfer? A qualitative study among IVF patients and professionals. Hum Reprod 23, 2036-2042.

Dancet, E., Van Empel, I., Rober, P., Nelen, W., Kremer, J., D’Hooghe, T. (2011). Patient-centred fertility care: A qualitative study to listen to the patient’s voice in Dutch speaking Europe. Human Reprod 26, 827-833.

Delnoij, D. (2009). Measuring patient experiences in Europe: what can we learn from the experiences in the USA and England? Eur J Public Health 18, 354-356.

Damman, O., Hendriks, M., Sixma H. (2009). Towards more patient centred healthcare: A new Consumer Quality Index instrument to assess patients’ experiences with breast care. Eur J Cancer 45, 1569-1577.

Elwyn, G., Buetow, S., Hibbard, J., et al. (2007). Measuring quality through performance. Respecting the subjective: quality measurement from the patient’s perspective. BMJ 17, 1021-1022.

Van Empel, I., Aarts, J., Cohlen, B., Huppelschoten, D., Laven, J., Nelen, W., Kremer, J. (2010). Measuring patient centredness, the neglected outcome measure in fertility care: a random multicentre validation study. Hum Reprod 25, 2516-2526.

Coulter, A., Ellins, J. (2006). Patient-focused interventions. A review of the evidence. 1st edn. The Health Foundation and Picker Institute Europe, London, UK.

Van Peperstraten, A., Nelen, W., Grol, R., Zielhuis, G., Adang, E., Stalmeier, P., Hermens, R., Kremer, J. (2010). The effect of a multifaceted empowerment strategy on decision making about the number of embryos transferred in in vitro fertilisation: a randomised controlled trial. BMJ 78, 124-129.

Huyghe, E., Martinetti, P., Sui, D., Schover, L. (2009). Banking on fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment. Psychooncology 18, 1011-1014.

Eysenbach, G., Jadad, A. (2001). Evidence-based patient choice and consumer health informatics in the Internet age. J Med Internet Res 3, e19.

Tuil, W., Verhaak, C., Braat, D., de Vries Robbé, P., Kremer, J. (2007). Empowering patients undergoing in vitro fertilization by providing Internet access to medical data. Fertil Steril 88, 361-368.

Van Empel, I., Hermens, R., Akkermans, R., Hollander, K., Nelen, W., Kremer, J. (2011). Organizational determinants of patient-centred fertility care: a multilevel analysis. Fertil Steril 95, 513-519.

Baker, T., Gustafson, D., Shaw, B., Hawkins, R., Pingree, S., Roberts, L., Strecher, V. (2010). Relevance of CONSORT reporting criteria for research on eHealth interventions. Pat Educ Couns 81S, S77-S86.

Powell , J., Darvell, M., Gray J. (2003). The doctor, the patient and the world-wide web: how the Internet is changing healthcare. J R Soc Med 96, 74-76.

Dedding, C., van Doorn, R., Winkler, L., Reis, R. (2011). How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients. Soc Sci Med 72, 49-53.

Eysenbach, G. (2008). Medicine 2.0: Social networking, collaboration, participation, apomediation, and openness. J Med Internet Res 10, e22.

Shirky, C. (2009). Here comes everybody. The power organizing without organizations. Penguin books.

Aarts, J., Van den Haak, P., Nelen, W., Tuil, W., Faber, M., Kremer, J. (2011). Patient-focused Internet interventions in reproductive medicine: a scoping review. Hum Reprod Update. In press.

Swan, M. (2009). Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health 6, 492-525.

Demiris, G. (2006). The diffusion of virtual communities in health care: concepts and challenges. Pat Educ Couns 62, 178-188.

Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., Stern, A. (2004). Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 328, 1166-1171.

Van Uden-Kraan, C., Drossaert, C., Taal, E., Seydel, E., Van de Laar, M. (2009). Participation in online patient support groups endorses patients’ empowerment. Pat Educ Couns 74, 61-69.