Original Article
The first step in ensuring patient-centred quality of care: ask the patient
A. Zucca MMSc,
R. Sanson-Fisher PhD,
A. Waller PhD,
M. Carey DPsych,
D. Boadle FRACP,
Corresponding Author
A. Zucca MMSc
PhD Candidate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Correspondence address: Alison Zucca, Priority Research Centre for Health Behaviour, University of Newcastle, Level 4, Hunter Medical Research Institute, Callaghan, NSW 2308, Australia (e-mail: [email protected]).Search for more papers by this authorR. Sanson-Fisher PhD
Laureate Professor of Health Behaviour
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorA. Waller PhD
Research Associate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorM. Carey DPsych
Senior Research Associate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorD. Boadle FRACP
Staff Specialist in Medical Oncology
Department of Medical Oncology, Royal Hobart Hospital, Hobart, TAS, Australia
Search for more papers by this authorA. Zucca MMSc,
R. Sanson-Fisher PhD,
A. Waller PhD,
M. Carey DPsych,
D. Boadle FRACP,
Corresponding Author
A. Zucca MMSc
PhD Candidate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Correspondence address: Alison Zucca, Priority Research Centre for Health Behaviour, University of Newcastle, Level 4, Hunter Medical Research Institute, Callaghan, NSW 2308, Australia (e-mail: [email protected]).Search for more papers by this authorR. Sanson-Fisher PhD
Laureate Professor of Health Behaviour
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorA. Waller PhD
Research Associate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorM. Carey DPsych
Senior Research Associate
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Level 4, Hunter Medical Research Institute, Callaghan, NSW, Australia
Search for more papers by this authorD. Boadle FRACP
Staff Specialist in Medical Oncology
Department of Medical Oncology, Royal Hobart Hospital, Hobart, TAS, Australia
Search for more papers by this authorAbstract
Health providers may not be aware of their patients' needs or preferences, and patients reluctant to raise their concerns. Consequently, the first step in ensuring quality of care is to ask the patient about the care that they would like. A cross-sectional sample of 244 medical oncology outpatients were surveyed about provider-asking behaviours across six dimensions of patient-centred care defined by the Institute of Medicine. Specifically, were patients asked by clinic staff at the treatment centre about their physical and emotional symptoms, information needs to enable decision-making, preferences for involvement in decision-making, involvement of family and friends, and appointment scheduling. Patients were significantly (Cochran's χ2 (9) = 122.541, P < 0.001) less likely to be asked about emotional symptoms (35% infrequently asked), preferences for the involvement of family and friends (25% infrequently asked), and preferences for involvement in medical decision-making (23% infrequently asked). Only a minority of patients were infrequently asked about their treatment-related information needs (8%), physical symptoms (13% pain, 14% fatigue) and preferences for appointment scheduling (13%). Younger age, not Australian born and greater educational qualifications were associated with being infrequently asked. Improvements to care delivery can be made if clinic staff were to more regularly elicit patient's emotional symptoms, and their preferences for the involvement of family/friends and participation in medical decision-making.
References
- Ahmed F., Burt J. & Roland M. (2014) Measuring patient experience: concepts and methods. In: The Patient-Patient-Centered Outcomes Research 7, 235–241.
10.1007/s40271-014-0060-5 Google Scholar
- Anderson K.O., Richman S.P., Hurley J., Palos G., Valero V., Mendoza T.R., Gning I. & Cleeland C.S. (2002) Cancer pain management among underserved minority outpatients. Cancer 94, 2295–2304.
- Anderson K.O., Green C.R. & Payne R. (2009) Racial and ethnic disparities in pain: causes and consequences of unequal care. The Journal of Pain 10, 1187–1204.
- Barlési F., Boyer L., Doddoli C., Antoniotti S., Thomas P. & Auquier P. (2005) The place of patient satisfaction in quality assessment of lung cancer thoracic surgery. Chest Journal 128, 3475–3481.
- Basch E., Prestrud A.A., Hesketh P.J., Kris M.G., Feyer P.C., Somerfield M.R., Chesney M., Clark-Snow R.A., Flaherty A.M. & Freundlich B. (2011) Antiemetics: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology 29, 4189–4198.
- Bidstrup P.E., Johansen C. & Mitchell A.J. (2011) Screening for cancer-related distress: summary of evidence from tools to programmes. Acta Oncologica 50, 194–204.
- Blayney D.W., Severson J., Martin J., Kadlubek P., Ruane T. & Harrison K. (2012) Michigan oncology practices showed varying adherence rates to practice guidelines, but quality interventions improved care. Health Affairs 31, 718–728.
- Bower J.E., Bak K., Berger A., Breitbart W., Escalante C.P., Ganz P.A., Schnipper H.H., Lacchetti C., Ligibel J.A. & Lyman G.H. (2014) Screening, assessment, and management of fatigue in adult survivors of cancer: an American Society of Clinical Oncology Clinical Practice Guideline adaptation. Journal of Clinical Oncology 32, 1840–1850.
- Boyes A., Girgis A. & Lecathelinais C. (2009) Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). Journal of Evaluation in Clinical Practice 15, 602–606.
- Boyes A.W., Girgis A., D'Este C. & Zucca A.C. (2012) Prevalence and correlates of cancer survivors' supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer 12, 150.
- Brédart A., Sultan S. & Regnault A. (2010) Patient satisfaction instruments for cancer clinical research or practice. Expert Review of Pharmacoeconomics and Outcomes Research 10, 129–141.
- Brown R., Butow P., Wilson-Genderson M., Bernhard J., Ribi K. & Juraskova I. (2012) Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. Journal of Clinical Oncology 30, 857–862.
- Bruera E., Sweeney C., Calder K., Palmer L. & Benisch-Tolley S. (2001) Patient preferences versus physician perceptions of treatment decisions in cancer care. Journal of Clinical Oncology 19, 2883–2885.
- Bultz B.D. & Carlson L.E. (2006) Emotional distress: the sixth vital sign-future directions in cancer care. Psycho-Oncology 15, 93–95.
- Butow P., Bell M., Goldstein D., Sze M., Aldridge L., Abdo S., Mikhail M., Dong S., Iedema R. & Ashgari R. (2011) Grappling with cultural differences: communication between oncologists and immigrant cancer patients with and without interpreters. Patient Education and Counseling 84, 398–405.
- Carroll J.K., Humiston S.G., Meldrum S.C., Salamone C.M., Jean-Pierre P., Epstein R.M. & Fiscella K. (2010) Patients' experiences with navigation for cancer care. Patient Education and Counseling 80, 241–247.
- Chassin M.R., Loeb J.M., Schmaltz S.P. & Wachter R.M. (2010) Accountability measures—using measurement to promote quality improvement. New England Journal of Medicine 363, 683–688.
- Coulter A. (2006) Can patients assess the quality of health care? Patients' surveys should ask about real experiences of medical care. British Medical Journal 333, 1.
- Denis L., Joniau S., Bossi A., Baskin-Bey E. & Fitzpatrick J.M. (2012) PCA: prostate cancer, patient-centred approach or both? BJU International 110, 16–22.
- Detmar S., Aaronson N., Wever L., Muller M. & Schornagel J. (2000) How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology 18, 3295–3301.
- Edlund M.J., Young A.S., Kung F.Y., Sherbourne C.D. & Wells K.B. (2003) Does satisfaction reflect the technical quality of mental health care? Health Services Research 38, 631–645.
- Epstein R. & Street R., Jr. (2007) Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, Bethesda, MD, USA. NIH Publication No. 07-6225.
- Fenton J.J., Jerant A.F., Bertakis K.D. & Franks P. (2012) The cost of satisfaction: a national study of patient satisfaction, health care utilization, expenditures, and mortality. Archives of Internal Medicine 172, 405–411.
- Fiscella K., Franks P., Gold M.R. & Clancy C.M. (2000) Inequality in quality: addressing socioeconomic, racial, and ethnic disparities in health care. JAMA 283, 2579–2584.
- Ford R.C., Bach S.A. & Fottler M.D. (1997) Methods of measuring patient satisfaction in health care organizations. Health Care Management Review 22, 74–89.
- Fowler F.J., Gallagher P.M., Bynum J.P. & Barry M.J. (2012) Decision-making process reported by Medicare patients who had coronary artery stenting or surgery for prostate cancer. Journal of General Internal Medicine 27, 911–916.
- Green A.R., Tan-McGrory A., Cervantes M.C. & Betancourt J.R. (2010a) Leveraging quality improvement to achieve equity in health care. Joint Commission Journal on Quality and Patient Safety 36, 435–442.
10.1016/S1553-7250(10)36065-X Google Scholar
- Green E., Zwaal C., Beals C., Fitzgerald B., Harle I., Jones J., Tsui J., Volpe J., Yoshimoto D. & Wiernikowski J. (2010b) Cancer-related pain management: a report of evidence-based recommendations to guide practice. The Clinical Journal of Pain 26, 449.
- Greenland S. (1989) Modeling and variable selection in epidemiologic analysis. American Journal of Public Health 79, 340–349.
- Gunnarsdottir S., Serlin R.C. & Ward S. (2005) Patient-related barriers to pain management: the Icelandic Barriers Questionnaire II. Journal of Pain and Symptom Management 29, 273–285.
- Hall A., Lynagh M., Bryant J. & Sanson-Fisher R. (2013) Supportive care needs of hematological cancer survivors: a critical review of the literature. Critical Reviews in Oncology/Hematology 88, 102–116.
- Harrison J., Young J., Price M., Butow P. & Solomon M. (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Supportive Care in Cancer 17, 1117–1128.
- Hawley S.T., Lantz P.M., Janz N.K., Salem B., Morrow M., Schwartz K., Liu L. & Katz S.J. (2007) Factors associated with patient involvement in surgical treatment decision making for breast cancer. Patient Education and Counseling 65, 387–395.
- Institute of Medicine (IOM) (2001) Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press, Washington, DC, USA.
- Jacobsen P.B., Shibata D., Siegel E.M., Lee J.H., Fulp W.J., Alemany C., Abesada-Terk G., Brown R., Cartwright T. & Faig D. (2011) Evaluating the quality of psychosocial care in outpatient medical oncology settings using performance indicators. Psycho-Oncology 20, 1221–1227.
- Jakobsson S., Ekman T. & Ahlberg K. (2008) Components that influence assessment and management of cancer-related symptoms: an interdisciplinary perspective. Oncology Nursing Forum 35, 691–698.
- Jerant A., Fenton J.J., Bertakis K.D. & Franks P. (2014) Satisfaction with health care providers and preventive care adherence: a national study. Medical Care 52, 78–85.
- Keating N.L., Weeks J.C., Borbas C. & Guadagnoli E. (2003) Treatment of early stage breast cancer: do surgeons and patients agree regarding whether treatment alternatives were discussed? Breast Cancer Research and Treatment 79, 225–231.
- Keller M., Sommerfeldt S., Fischer C., Knight L., Riesbeck M., Löwe B., Herfarth C. & Lehnert T. (2004) Recognition of distress and psychiatric morbidity in cancer patients: a multi-method approach. Annals of Oncology 15, 1243–1249.
- Kravitz R.L. (1996) Patients' expectations for medical care: an expanded formulation based on review of the literature. Medical Care Research and Review 53, 3–27.
- Legare F., Ratte S., Gravel K. & Graham I.D. (2008) Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals' perceptions. Patient Education and Counseling 73, 526–535.
- Lis C.G., Rodeghier M. & Gupta D. (2009) Distribution and determinants of patient satisfaction in oncology: a review of the literature. Patient Preference and Adherence 3, 287.
- Mazor K.M., Gaglio B., Nekhlyudov L., Alexander G.L., Stark A., Hornbrook M.C., Walsh K., Boggs J., Lemay C.A. & Firneno C. (2013) Assessing patient-centered communication in cancer care: stakeholder perspectives. Journal of Oncology Practice 9, e186–e193.
- McLaughlin L.A. & Braun K.L. (1998) Asian and Pacific Islander cultural values: considerations for health care decision making. Health and Social Work 23, 116–126.
- McNeill J., Reynolds J. & Ney M. (2007) Unequal quality of cancer pain management: disparity in perceived control and proposed solutions. Oncology Nursing Forum 34, 1121–1128.
- Meijer A., Roseman M., Delisle V.C., Milette K., Levis B., Syamchandra A., Stefanek M.E., Stewart D.E., de Jonge P., Coyne J.C. & Thombs B.D. (2013) Effects of screening for psychological distress on patient outcomes in cancer: a systematic review. Journal of Psychosomatic Research 75, 1–17.
- Obeidat R., Homish G. & Lally R. (2013) Shared decision making among individuals with cancer in non-western cultures: a literature review. Oncology Nursing Forum 40, 454–463.
- Okamoto I., Wright D. & Foster C. (2012) Impact of cancer on everyday life: a systematic appraisal of the research evidence. Health Expectations 15, 97–111.
- Oldenmenger W.H., Sillevis Smitt P.A.E., van Dooren S., Stoter G. & van der Rijt C.C.D. (2009) A systematic review on barriers hindering adequate cancer pain management and interventions to reduce them: a critical appraisal. European Journal of Cancer 45, 1370–1380.
- Passik S.D., Kirsh K.L., Donaghy K., Holtsclaw E., Theobald D., Cella D. & Breitbart W. (2002) Patient-related barriers to fatigue communication: initial validation of the fatigue management barriers questionnaire. Journal of Pain and Symptom Management 24, 481–493.
- Peck B.M. (2011) Age-related differences in doctor-patient interaction and patient satisfaction. Current Gerontology and Geriatrics Research 2011, 1–10.
10.1155/2011/137492 Google Scholar
- Rogers M.S. & Todd C. (2010) Can cancer patients influence the pain agenda in oncology outpatient consultations? Journal of Pain and Symptom Management 39, 268–282.
- Say R., Murtagh M. & Thomson R. (2006) Patients' preference for involvement in medical decision making: a narrative review. Patient Education and Counseling 60, 102–114.
- van Scheppingen C., Schroevers M.J., Smink A., van der Linden Y.M., Mul V.E., Langendijk J.A., Coyne J.C. & Sanderman R. (2011) Does screening for distress efficiently uncover meetable unmet needs in cancer patients? Psycho-Oncology 20, 655–663.
- Schofield P., Carey M., Bonevski B. & Sanson-Fisher R. (2006) Barriers to the provision of evidence-based psychosocial care in oncology. Psycho-Oncology 15, 863–872.
- Schubart J.R., Toran L., Whitehead M., Levi B.H. & Green M.J. (2013) Informed decision making in advance care planning: concordance of patient self-reported diagnosis with physician diagnosis. Supportive Care in Cancer 21, 637–641.
- Shields C.G., Coker C.J., Poulsen S.S., Doyle J.M., Fiscella K., Epstein R.M. & Griggs J.J. (2009) Patient-centered communication and prognosis discus-sions with cancer patients. Patient Education and Counseling 77, 437–442.
- Sitzia J. & Wood N. (1997) Patient satisfaction: a review of issues and concepts. Social Science and Medicine 45, 1829–1843.
- Sofaer S. & Firminger K. (2005) Patient perceptions of the quality of health services. Annual Review of Public Health 26, 513–559.
- Stone P., Richardson A., Ream E., Smith A., Kerr D. & Kearney N. (2000) Cancer-related fatigue: inevitable, unimportant and untreatable? Results of a multi-centre patient survey. Annals of Oncology 11, 971–975.
- Street J., Richard L., Gordon H.S., Ward M.M., Krupat E. & Kravitz R.L. (2005) Patient participation in medical consultations: why some patients are more involved than others. Medical Care 43, 960–969.
- Tariman J.D., Berry D.L., Cochrane B., Doorenbos A. & Schepp K. (2010) Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Annals of Oncology 21, 1145–1151.
- Taylor S., Harley C., Campbell L.J., Bingham L., Podmore E.J., Newsham A.C., Selby P.J., Brown J.M. & Velikova G. (2011) Discussion of emotional and social impact of cancer during outpatient oncology consultations. Psycho-Oncology 20, 242–251.
- Thompson A.G. & Suñol R. (1995) Expectations as determinants of patient satisfaction: concepts, theory and evidence. International Journal for Quality in Health Care 7, 127–141.
- Turner J., Zapart S., Pedersen K., Rankin N., Luxford K. & Fletcher J. (2005) Clinical practice guidelines for the psychosocial care of adults with cancer. Psycho-Oncology 14, 159–173.
- Velikova G., Wright P., Smith A.B., Stark D., Perren T., Brown J. & Selby P. (2001) Self-reported quality of life of individual cancer patients: concordance of results with disease course and medical records. Journal of Clinical Oncology 19, 2064–2073.
- Vingerhoets E., Wensing M. & Grol R. (2001) Feedback of patients' evaluations of general practice care: a randomised trial. Quality in Health Care 10, 224–228.
- Wessels H., de Graeff A., Wynia K., de Heus M., Kruitwagen C.L., Teunissen S.C. & Voest E.E. (2010) Are health care professionals able to judge cancer patients' health care preferences correctly? A cross-sectional study. BMC Health Services Research 10, 198.
- Wolff J.L. & Roter D.L. (2011) Family presence in routine medical visits: a meta-analytical review. Social Science and Medicine 72, 823–831.
- Yates P.M., Edwards H.E., Nash R.E., Walsh A.M., Fentiman B.J., Skerman H.M. & Najman J.M. (2002) Barriers to effective cancer pain management: a survey of hospitalized cancer patients in Australia. Journal of Pain and Symptom Management 23, 393–405.
- Zikmund-Fisher B.J., Couper M.P. & Fagerlin A. (2012) Disparities in patient reports of communications to inform decision making in the DECISIONS survey. Patient Education and Counseling 87, 198–205.
- Zucca A.C., Sanson-Fisher R., Waller A. & Carey M. (2014) Patient-centred care: making cancer treatment centres accountable. Supportive Care in Cancer 22, 1989–1997; doi: 10.1007/s00520-014-2221-4.
- Zucca A., Sanson-Fisher R., Waller A., Carey M., Fradgley E. & Regan T. (2015) Medical oncology patients: are they offered help and does it provide relief?. Journal of Pain and Symptom Management 50, 436–444.
