Patient-focused internet interventions in reproductive medicine: a scoping review.

BACKGROUND The Internet has revolutionized fertility care since it became a popular source of information and support for infertile patients in the last decade. The aim of this scoping review is to map (i) the main categories of patient-focused Internet interventions within fertility care, (ii) the detailed composition of the interventions and (iii) how these interventions were evaluated. METHODS A literature search used various 'Internet' and 'Infertility' search terms to identify relevant studies published up to 1 September 2011. The selected studies had to include patients facing infertility and using an infertility-related Internet intervention. We charted data regarding categories of interventions, components of interventions and evaluation methodology. We categorized the stages of research using the UK's Medical Research Council framework for evaluating complex interventions. RESULTS We included 20 studies and identified 3 educational interventions, 2 self-help interventions, 1 human-supported therapeutic intervention, 9 online support groups and 2 counselling services. Information provision, support and mental health promotion were common aims. Few interactive online components were present in the online programmes. Three studies were in the pilot phase and 17 were in the evaluation phase. CONCLUSIONS Several categories of patient-focused Internet-based interventions in fertility care are primarily applied to provide support and education and promote mental health. The interventions could be improved by using more interactive and dynamic elements as their key components. Finally, more emphasis on methodological standards for complex interventions is needed to produce more rigorous evaluations. This review shows where further development or research into patient-focused Internet interventions in fertility-care practice may be warranted.

[1]  Peter Dangerfield,et al.  Developing professionalism through the use of wikis: A study with first-year undergraduate medical students , 2010, Medical teacher.

[2]  Holly Witteman,et al.  Measuring the Impact of a Moving Target: Towards a Dynamic Framework for Evaluating Collaborative Adaptive Interactive Technologies , 2009, Journal of medical Internet research.

[3]  Ian Shrier,et al.  Should meta-analyses of interventions include observational studies in addition to randomized controlled trials? A critical examination of underlying principles. , 2007, American journal of epidemiology.

[4]  Jan P Vandenbroucke,et al.  Observational Research, Randomised Trials, and Two Views of Medical Science , 2008, PLoS medicine.

[5]  Jan Kremer,et al.  Chat about What Matters Most: An Analysis of Chat Contributions Posted to an Outpatient Fertility Website , 2008, Cyberpsychology Behav. Soc. Netw..

[6]  David E. Goodrich,et al.  An Online Community Improves Adherence in an Internet-Mediated Walking Program. Part 1: Results of a Randomized Controlled Trial , 2010, Journal of medical Internet research.

[7]  A. J. van der Beek,et al.  Effectiveness of Web-based Interventions on Patient Empowerment: A Systematic Review and Meta-analysis , 2010, Journal of medical Internet research.

[8]  Nicol Nijland,et al.  Increasing the use of e-consultation in primary care: Results of an online survey among non-users of e-consultation , 2009, Int. J. Medical Informatics.

[9]  Treatment review. , 1995, Treatment review.

[10]  C. Dedding,et al.  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. , 2011, Social science & medicine.

[11]  Rik Crutzen,et al.  Investigating Predictors of Visiting, Using, and Revisiting an Online Health-Communication Program: A Longitudinal Study , 2010, Journal of medical Internet research.

[12]  Y. Epstein,et al.  Use of the internet as the only outlet for talking about infertility. , 2002, Fertility and sterility.

[13]  Pieter F de Vries Robbé,et al.  Empowering patients undergoing in vitro fertilization by providing Internet access to medical data. , 2007, Fertility and sterility.

[14]  Pieter F de Vries Robbé,et al.  Dynamics of Internet usage during the stages of in vitro fertilization. , 2009, Fertility and sterility.

[15]  M. Swan Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking , 2009, International journal of environmental research and public health.

[16]  Sandra L Saperstein,et al.  Using the Internet for Health-Related Activities: Findings From a National Probability Sample , 2009, Journal of medical Internet research.

[17]  Huong Q. Nguyen,et al.  Internet-based patient education and support interventions: a review of evaluation studies and directions for future research , 2004, Comput. Biol. Medicine.

[18]  Tara M Cousineau,et al.  Online psychoeducational support for infertile women: a randomized controlled trial. , 2008, Human reproduction.

[19]  E. Murray,et al.  Internet Interventions for Long-Term Conditions: Patient and Caregiver Quality Criteria , 2006, Journal of medical Internet research.

[20]  Judith Bernstein,et al.  Assessing the quality of infertility resources on the World Wide Web: tools to guide clients through the maze of fact and fiction. , 2002, Journal of midwifery & women's health.

[21]  J. Powell,et al.  Primary care Health related virtual communities and electronic support groups : systematic review of the effects of online peer to peer interactions , 2004 .

[22]  Heiko Spallek,et al.  Facebook for Scientists: Requirements and Services for Optimizing How Scientific Collaborations Are Established , 2008, Journal of medical Internet research.

[23]  J. Kremer,et al.  When and why do subfertile couples discontinue their fertility care? A longitudinal cohort study in a secondary care subfertility population. , 2009, Human reproduction.

[24]  C. Uk Critical appraisal skills programme (CASP): checklists. , 2013 .

[25]  D. Altman,et al.  Assessing Risk of Bias in Included Studies , 2008 .

[26]  P. Tugwell,et al.  The Newcastle-Ottawa Scale (NOS) for Assessing the Quality of Nonrandomised Studies in Meta-Analyses , 2014 .

[27]  T. Wischmann Implications of psychosocial support in infertility – a critical appraisal , 2008, Journal of psychosomatic obstetrics and gynaecology.

[28]  France Légaré,et al.  Healthcare professionals' intentions to use wiki-based reminders to promote best practices in trauma care: a survey protocol , 2010, Implementation science : IS.

[29]  C. Abraham,et al.  Effective techniques in healthy eating and physical activity interventions: a meta-regression. , 2009, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[30]  M. Hautzinger,et al.  A new quality-of-life measure for men experiencing involuntary childlessness. , 2005, Human reproduction.

[31]  Flis Henwood,et al.  The digital divide, health information and everyday life , 2005, New Media Soc..

[32]  Carolyn Snyder,et al.  Web Site Usability: A Designer's Guide , 1997 .

[33]  D. Levac,et al.  Scoping studies: advancing the methodology , 2010, Implementation science : IS.

[34]  Jeremy C Wyatt,et al.  Evaluation of ehealth systems and services , 2004, BMJ : British Medical Journal.

[35]  J. Groopman,et al.  Untangling the Web--patients, doctors, and the Internet. , 2010, The New England journal of medicine.

[36]  O. Isupova Support through patient internet-communities: Lived experience of Russian in vitro fertilization patients , 2011, International journal of qualitative studies on health and well-being.

[37]  G. Eysenbach Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness , 2008, Journal of medical Internet research.

[38]  Y. Epstein,et al.  Assessing infertility information on the Internet: challenges and possible solutions. , 2005, Fertility and sterility.

[39]  Steve Wheeler,et al.  Wikis, blogs and podcasts: a new generation of Web-based tools for virtual collaborative clinical practice and education , 2006, BMC medical education.

[40]  L. Engelen,et al.  Definition of Health 2.0 and Medicine 2.0: A Systematic Review , 2010, Journal of medical Internet research.

[41]  R. Norman,et al.  The impact of lifestyle factors on reproductive performance in the general population and those undergoing infertility treatment: a review. , 2007, Human reproduction update.

[42]  L. Schmidt Psychosocial burden of infertility and assisted reproduction , 2006, The Lancet.

[43]  C. Pope,et al.  Qualitative methods in research on healthcare quality , 2002, Quality & safety in health care.

[44]  Herbert Davies,et al.  “Analgesic” , 1946 .

[45]  L. Kahlor,et al.  Perceptions of infertility information and support sources among female patients who access the Internet. , 2009, Fertility and sterility.

[46]  A. Azuero,et al.  Evaluation of the Fertility and Cancer Project (FCP) among young breast cancer survivors , 2010, Psycho-oncology.

[47]  L. Baker,et al.  Internet use and stigmatized illness. , 2005, Social science & medicine.

[48]  S. Toscano,et al.  The Lived Experience of Women Pregnant (Including Preconception) Post In Vitro Fertilization Through the Lens of Virtual Communities , 2009, Health care for women international.

[49]  J. Boivin,et al.  Development and preliminary validation of the fertility status awareness tool: FertiSTAT. , 2010, Human reproduction.

[50]  R. Casper,et al.  Use of the internet by infertile couples. , 2000, Fertility and sterility.

[51]  Neil Coulson,et al.  The male experience of infertility: a thematic analysis of an online infertility support group bulletin board , 2008 .

[52]  Use Of Internet In Infertility Patients , 2005 .

[53]  J. Kremer,et al.  IVF patients show three types of online behaviour. , 2008, Human reproduction.

[54]  Wolfgang Himmel,et al.  Information Needs and Visitors' Experience of an Internet Expert Forum on Infertility , 2005, Journal of medical Internet research.

[55]  Nikki M. Carroll,et al.  Recruitment to a Randomized Web-Based Nutritional Intervention Trial: Characteristics of Participants Compared to Non-Participants , 2009, Journal of medical Internet research.

[56]  A. Barak,et al.  Defining Internet-Supported Therapeutic Interventions , 2009, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[57]  James O Prochaska,et al.  Online Health Behavior and Disease Management Programs: Are We Ready for Them? Are They Ready for Us? , 2005, Journal of medical Internet research.

[58]  Cameron D. Norman,et al.  Using the internet to assist smoking prevention and cessation in schools: a randomized, controlled trial. , 2008, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[59]  Jan P Vandenbroucke,et al.  The HRT controversy: observational studies and RCTs fall in line , 2009, The Lancet.

[60]  Guidance recommends asking pregnant women about mental health , 2007, BMJ : British Medical Journal.

[61]  Alan Shiell,et al.  Complex interventions or complex systems? Implications for health economic evaluation , 2008, BMJ : British Medical Journal.

[62]  Sumaira Malik,et al.  ‘They all supported me but I felt like I suddenly didn't belong anymore’: an exploration of perceived disadvantages to online support seeking , 2010, Journal of psychosomatic obstetrics and gynaecology.

[63]  Elizabeth Murray,et al.  Development and formative evaluation of the e-Health Implementation Toolkit (e-HIT). , 2010, BMC medical informatics and decision making.

[64]  A. Jadad,et al.  What Is eHealth (3): A Systematic Review of Published Definitions , 2005, Journal of medical Internet research.

[65]  Amy S. Billing,et al.  Rural eHealth Nutrition Education for Limited-Income Families: An Iterative and User-Centered Design Approach , 2009, Journal of medical Internet research.

[66]  C. Barratt,et al.  Can the Internet widen participation in reproductive medicine education for professionals? , 2004, Human reproduction.

[67]  O. Ishihara,et al.  The International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) Revised Glossary on ART Terminology, 2009. , 2009, Human reproduction.

[68]  R. Winett,et al.  Using Internet technology to deliver a behavioral weight loss program. , 2001, JAMA.

[69]  W. Sermeus,et al.  The patients' perspective on fertility care: a systematic review. , 2010, Human reproduction update.

[70]  George Demiris,et al.  The diffusion of virtual communities in health care: concepts and challenges. , 2006, Patient education and counseling.

[71]  Keli Ryan Steuber,et al.  Relational uncertainty, partner interference, and infertility: A qualitative study of discourse within online forums , 2008 .

[72]  J. Powell,et al.  The doctor, the patient and the world-wide web: how the internet is changing healthcare. , 2003, Journal of the Royal Society of Medicine.

[73]  Ahima vIRTuAL,et al.  Health information technology. , 2010, MGMA connexion.

[74]  G. Riva,et al.  A Second Life for eHealth: Prospects for the Use of 3-D Virtual Worlds in Clinical Psychology , 2008, Journal of medical Internet research.

[75]  J. Kremer,et al.  Weaknesses, strengths and needs in fertility care according to patients. , 2010, Human reproduction.

[76]  D. Cahill,et al.  Medical education with the Internet: a pilot training programme in reproductive medicine , 2001, BJOG : an international journal of obstetrics and gynaecology.

[77]  K Ann McKibbon,et al.  Health Information Technology to Facilitate Communication Involving Health Care Providers, Caregivers, and Pediatric Patients: A Scoping Review , 2010, Journal of medical Internet research.

[78]  F. Kraaimaat,et al.  Women's emotional adjustment to IVF: a systematic review of 25 years of research. , 2007, Human reproduction update.

[79]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

[80]  M. H. van den Berg,et al.  Internet-Based Physical Activity Interventions: A Systematic Review of the Literature , 2007, Journal of medical Internet research.

[81]  T. Tulandi,et al.  Quality of fertility clinic websites. , 2005, Fertility and sterility.

[82]  M. Laurant,et al.  Process evaluation on quality improvement interventions , 2003, Quality & safety in health care.

[83]  M. Eijkemans,et al.  Why do couples drop-out from IVF treatment? A prospective cohort study. , 2008, Human reproduction.

[84]  A. Coomarasamy,et al.  Infertility information on the World Wide Web: a cross-sectional survey of quality of infertility information on the internet in the UK. , 2008, Human reproduction.

[85]  Michele Tarsilla Cochrane Handbook for Systematic Reviews of Interventions , 2010, Journal of MultiDisciplinary Evaluation.

[86]  G. Eysenbach The Law of Attrition , 2005, Journal of medical Internet research.

[87]  M. Conroy,et al.  Development of an Online Diabetes Prevention Lifestyle Intervention Coaching Protocol for Use in Primary Care Practice , 2011, The Diabetes educator.

[88]  L. Hinton,et al.  Infertility; isolation and the Internet: a qualitative interview study. , 2010, Patient education and counseling.

[89]  Sumaira Malik,et al.  Coping with infertility online: an examination of self-help mechanisms in an online infertility support group. , 2010, Patient education and counseling.

[90]  J. Boivin,et al.  Knowledge about infertility risk factors, fertility myths and illusory benefits of healthy habits in young people. , 2008, Human reproduction.

[91]  J. Hendriks,et al.  Current Internet use and preferences of IVF and ICSI patients. , 2003, Human reproduction.

[92]  H. Nagler,et al.  Male infertility on the internet: an analysis of web‐based resources , 2005, BJU international.

[93]  S. Sofaer Qualitative methods: what are they and why use them? , 1999, Health services research.

[94]  T. Tulandi,et al.  Internet use by patients seeking infertility treatment , 2003, International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics.

[95]  Alan Shiell,et al.  Complex interventions: how “out of control” can a randomised controlled trial be? , 2004, BMJ : British Medical Journal.

[96]  A. Parasuraman,et al.  Technology Readiness Index (Tri) , 2000 .

[97]  Tara M Cousineau,et al.  Psychological impact of infertility. , 2007, Best practice & research. Clinical obstetrics & gynaecology.

[98]  Boris P. Kovatchev,et al.  Examining the Added Value of Audio, Graphics, and Interactivity in an Internet Intervention for Pediatric Encopresis , 2006 .

[99]  C. Champagne,et al.  Design and Implementation of an Interactive Website to Support Long-Term Maintenance of Weight Loss , 2008, Journal of medical Internet research.

[100]  Dawen Sui,et al.  Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment , 2009, Psycho-oncology.

[101]  G D Adamson,et al.  International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) revised glossary of ART terminology, 2009. , 2009, Fertility and sterility.

[102]  T. Berger,et al.  Internet-based support for infertile patients: a randomized controlled study , 2010, Journal of Behavioral Medicine.

[103]  Sumaira Malik,et al.  Computer-mediated infertility support groups: an exploratory study of online experiences. , 2008, Patient education and counseling.

[104]  Sumaira Malik,et al.  A Comparison of Lurkers and Posters Within Infertility Online Support Groups , 2011, Computers, informatics, nursing : CIN.

[105]  Bret R. Shaw,et al.  Relevance of CONSORT reporting criteria for research on eHealth interventions. , 2010, Patient education and counseling.

[106]  Christian Köhler,et al.  Health-related searches on the Internet. , 2004, JAMA.

[107]  A. Farmer,et al.  Designing and evaluating complex interventions to improve health care , 2007, BMJ : British Medical Journal.

[108]  Henry W. W. Potts,et al.  Is E-health Progressing Faster Than E-health Researchers? , 2006, Journal of medical Internet research.

[109]  W. O'donohue,et al.  Web-based treatment for infertility-related psychological distress , 2010, Archives of Women's Mental Health.

[110]  P F de Vries Robbé,et al.  Patient-centred care: using online personal medical records in IVF practice. , 2006, Human reproduction.

[111]  Gunther Eysenbach,et al.  Stages of use: consideration, initiation, utilization, and outcomes of an internet-mediated intervention , 2010, BMC Medical Informatics Decis. Mak..

[112]  D. Knauth,et al.  Psychological distress as predictor of quality of life in men experiencing infertility: a cross-sectional survey , 2010, Reproductive health.