A patient perspective on shared decision making in stage I non-small cell lung cancer: a mixed methods study

BackgroundSurgery and stereotactic ablative radiotherapy (SABR) are both curative treatment options for patients with a stage I non-small cell lung cancer (NSCLC). Consequently, there is growing interest in studying the role of patients in treatment decision making. We studied how patients with stage I NSCLC perceived shared decision making (SDM) in general, and how they viewed different aspects of SDM.MethodsA sequential mixed methods design was used, consisting of qualitative interviews (N = 11), as well as a survey study (N = 76) focusing on different SDM-related aspects. Participants were interviewed to understand their own experience with treatment decision making. In the survey study, patients rated the importance of 20 aspects of shared decision making that were identified during interviews. Descriptive analysis and explorative factor analysis were performed.ResultsWe assessed six qualitative themes covering SDM aspects that were determined by patients to be important. The survey identified four SDM-related factors with sufficient internal consistency, namely (1) ‘guidance by clinician’ (α = .741), (2) ‘conduct of clinician’ (α = .774); (3) ‘preparation for treatment decision making’ (α = .864); and (4) ‘active role of patient in treatment decision making’ (α = .782). Of these, clinician guidance was rated as most important by patients (M = 3.61; SD = .44). Only 28.9 % of patients in the survey study reported that both treatment options were discussed with them.ConclusionsPatients with a stage I NSCLC found clinician guidance to be important when making treatment decisions. Nevertheless, the majority of patients reported not being offered both treatment options, which might have influenced this finding.

[1]  E. Peters,et al.  Age differences in dual information‐processing modes , 2008, Cancer.

[2]  Ellen Uiters,et al.  Health literacy of Dutch adults: a cross sectional survey , 2013, BMC Public Health.

[3]  Daniëlle R. M. Timmermans,et al.  Congruence between patients’ preferred and perceived participation in medical decision-making: a review of the literature , 2014, BMC Medical Informatics and Decision Making.

[4]  Glyn Elwyn,et al.  Implementing shared decision making in the NHS Creation of a platform of tools to provide information to doctors and patients should be the first step in giving patients choice about their treatment , say , 2010 .

[5]  M. Hendriks,et al.  Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients , 2013, BMC Cancer.

[6]  Sue Ziebland,et al.  Analysing qualitative data , 2000, BMJ : British Medical Journal.

[7]  L. Fallowfield,et al.  What oncologists believe they said and what patients believe they heard: an analysis of phase I trial discussions. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[8]  Gregory Makoul,et al.  Patient preferences for shared decisions: a systematic review. , 2012, Patient education and counseling.

[9]  M. Durand,et al.  Salzburg statement on shared decision making , 2011, BMJ : British Medical Journal.

[10]  Glyn Elwyn,et al.  The Psychometric Properties of CollaboRATE: A Fast and Frugal Patient-Reported Measure of the Shared Decision-Making Process , 2014, Journal of medical Internet research.

[11]  Paul Kline,et al.  The observation to variable ratio in factor analysis. , 1981 .

[12]  Lisa Gibbs,et al.  Generating best evidence from qualitative research: the role of data analysis , 2007, Australian and New Zealand journal of public health.

[13]  A. Neugut,et al.  Interpersonal influences and attitudes about adjuvant therapy treatment decisions among non-metastatic breast cancer patients: an examination of differences by age and race/ethnicity in the BQUAL study , 2013, Breast Cancer Research and Treatment.

[14]  D. de Ruysscher,et al.  Early and locally advanced non-small-cell lung cancer (NSCLC): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. , 2013, Annals of oncology : official journal of the European Society for Medical Oncology.

[15]  Karen R. Sepucha,et al.  Toward the 'tipping point': decision aids and informed patient choice. , 2007, Health affairs.

[16]  Dawn Stacey,et al.  Decision Making in Oncology: A Review of Patient Decision Aids to Support Patient Participation , 2008, CA: a cancer journal for clinicians.

[17]  F. Barg,et al.  Contrasting Parents' and Pediatricians' Perspectives on Shared Decision-Making in ADHD , 2011, Pediatrics.

[18]  J. Nunnally Psychometric Theory (2nd ed), New York: McGraw-Hill. , 1978 .

[19]  Leslie R. Martin,et al.  Facilitation of Patient Involvement in Care: Development and Validation of a Scale , 2001, Behavioral medicine.

[20]  Hennie Boeije,et al.  Analysis in qualitative research , 2010 .

[21]  Paul D Cleary,et al.  Psychometric Properties of the Consumer Assessment of Health Plans Study (CAHPS®) 2.0 Adult Core Survey , 2003 .

[22]  Glyn Elwyn,et al.  Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision , 2006, Health expectations : an international journal of public participation in health care and health policy.

[23]  E. Boyko,et al.  Brief questions to identify patients with inadequate health literacy. , 2004, Family medicine.

[24]  Angela Fagerlin,et al.  Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast cancer. , 2005, Health services research.

[25]  Nicholas Ladany,et al.  Consensual Qualitative Research: An Update , 2005 .

[26]  Benjamin D Smith,et al.  Future of cancer incidence in the United States: burdens upon an aging, changing nation. , 2009, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[27]  G. Caputo,et al.  Patients’ perceived involvement in care scale: , 2007, Journal of General Internal Medicine.

[28]  J. Bergh,et al.  A catalyst for change: the European cancer Patient's Bill of Rights. , 2014, The oncologist.

[29]  R. Thomson,et al.  Shared Decision Making: A Model for Clinical Practice , 2012, Journal of General Internal Medicine.

[30]  France Légaré,et al.  Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence , 2013, BMC Medical Informatics and Decision Making.

[31]  J. Wennberg,et al.  Unwarranted variations in healthcare delivery: implications for academic medical centres , 2002, BMJ : British Medical Journal.

[32]  H. Cohen,et al.  Patient and physician decision styles and breast cancer chemotherapy use in older women: Cancer and Leukemia Group B protocol 369901. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[33]  M. Faber,et al.  Commentary: the Dutch approach to unwarranted medical practice variation , 2011, BMJ : British Medical Journal.

[34]  G. Elwyn,et al.  Shared decision making: really putting patients at the centre of healthcare , 2012, BMJ : British Medical Journal.

[35]  P. Lepping,et al.  Systematic review on the prevalence of lack of capacity in medical and psychiatric settings. , 2015, Clinical medicine.

[36]  Max Dahele,et al.  Management of early-stage non-small cell lung cancer using stereotactic ablative radiotherapy: controversies, insights, and changing horizons. , 2015, Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology.

[37]  G. Elwyn,et al.  The OPTION scale: measuring the extent that clinicians involve patients in decision‐making tasks , 2005, Health expectations : an international journal of public participation in health care and health policy.

[38]  V. Entwistle,et al.  Supporting Patient Autonomy: The Importance of Clinician-patient Relationships , 2010, Journal of General Internal Medicine.

[39]  S. Ziebland,et al.  Analysing qualitative data , 2000, BMJ : British Medical Journal.

[40]  M. Lecompte,et al.  Ethnography and Qualitative Design in Educational Research , 1984 .

[41]  Rebecca L. Walker,et al.  Medical ethics needs a new view of autonomy. , 2008, The Journal of medicine and philosophy.

[42]  R. Whitley,et al.  Shared decision making in public mental health care: perspectives from consumers living with severe mental illness. , 2010, Psychiatric rehabilitation journal.

[43]  Glyn Elwyn,et al.  Consumers’ views of quality in the consultation and their relevance to ‘shared decision‐making’ approaches , 2001, Health expectations : an international journal of public participation in health care and health policy.

[44]  Peter Balter,et al.  Stereotactic ablative radiotherapy versus lobectomy for operable stage I non-small-cell lung cancer: a pooled analysis of two randomised trials. , 2015, The Lancet. Oncology.

[45]  Siamak Noorbaloochi,et al.  Validation of Screening Questions for Limited Health Literacy in a Large VA Outpatient Population , 2008, Journal of General Internal Medicine.

[46]  A. Stiggelbout,et al.  Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration , 2008, British Journal of Cancer.

[47]  J. Reijneveld,et al.  Patients' Preferences for Participation in Treatment Decision-Making at the End of Life: Qualitative Interviews with Advanced Cancer Patients , 2014, PloS one.

[48]  A. Steinsbekk,et al.  Same description, different values. How service users and providers define patient and public involvement in health care , 2013, Health expectations : an international journal of public participation in health care and health policy.

[49]  Hennie Boeije,et al.  The Contribution of Mixed Methods Research to the Field of Childhood Trauma , 2013 .

[50]  C. Cleeland,et al.  Symptom recovery after thoracic surgery: Measuring patient-reported outcomes with the MD Anderson Symptom Inventory. , 2015, The Journal of thoracic and cardiovascular surgery.

[51]  E. Smit,et al.  Differences between pulmonologists, thoracic surgeons and radiation oncologists in deciding on the treatment of stage I non-small cell lung cancer: A binary choice experiment. , 2015, Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology.

[52]  M. Oudkerk,et al.  Early and locally advanced non-small-cell lung cancer (NSCLC): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. , 2017, Annals of oncology : official journal of the European Society for Medical Oncology.

[53]  J. Somers,et al.  Multiple Paths to Just Ends: Using Narrative Interviews and Timelines to Explore Health Equity and Homelessness , 2012 .

[54]  O. Damman,et al.  Towards more patient centred healthcare: A new Consumer Quality Index instrument to assess patients' experiences with breast care. , 2009, European journal of cancer.

[55]  Martin Härter,et al.  The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. , 2010, Patient education and counseling.

[56]  R. Thomson,et al.  Decision aids for people facing health treatment or screening decisions. , 2003, The Cochrane database of systematic reviews.

[57]  D. Fitzpatrick-Lewis,et al.  "I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care. , 2010, Social science & medicine.