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Published in: BMC Cancer 1/2017

Open Access 01-12-2017 | Study protocol

Understanding why cancer patients accept or turn down psycho-oncological support: a prospective observational study including patients’ and clinicians’ perspectives on communication about distress

Authors: Diana Zwahlen, Theresa Tondorf, Sacha Rothschild, Michael T. Koller, Christoph Rochlitz, Alexander Kiss

Published in: BMC Cancer | Issue 1/2017

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Abstract

Background

International standards prioritize introducing routine emotional distress screening in cancer care to accurately identify patients who most need psycho-oncological treatment, and ensure that patients can access appropriate supportive care. However, only a moderate proportion of distressed patients accepts referrals to or uses psycho-oncological support services. Predictors and barriers to psycho-oncological support service utilization are under-studied. We know little about how patients and oncologists perceive the discussions when oncologists assess psychosocial distress with a screening instrument.
We aim to 1) assess the barriers and predictors of uptake of in-house psycho-oncological support along the distress screening pathway in cancer patients treated at a University Oncology Outpatient Clinic and, 2) determine how patients and clinicians perceive communication about psychosocial distress after screening with the Distress Thermometer.

Methods

This is a quantitative prospective observational study with qualitative aspects. We will examine medical and demographic variables, cancer patient self-reports of various psychological measures, and aspects of the patient-clinician communication as variables that potentially predict uptake of psycho-oncological support service. We will also assess the patients’ reasons for accepting or refusing psycho-oncological support services. We assess at three points in time, based on paper-and-pencil questionnaires and two patient interviews during the study period. We will monitor outcomes (psycho-oncology service uptake) four months after study entry.

Discussion

The study will improve our understanding of characteristics of patients who accept or refuse psycho-oncological support, and help us understand how patients’ and oncologists perceive communication about psychosocial distress, and referral to a psycho-oncologist. We believe this is the first study to focus on factors that affect uptake or rejection of psycho-oncological support services along the screening and referral pathway. The study 1) combines standard assessment with qualitative data collection, 2) embraces patient and oncologist perspectives, and, 3) focuses on patient-clinician communication about psychosocial issues raised by a standard screening instrument.
Our results may improve routine practices and eliminate barriers to adequate health care, and make it easier to recognize patients with high distress levels who underuse the service.
Literature
1.
go back to reference Hughes KL, Sargeant H, Hawkes AL. Acceptability of the Distress Thermometer and Problem List to community-based telephone cancer helpline operators, and to cancer patients and carers. BMC Cancer. 2011;11:46.CrossRefPubMedPubMedCentral Hughes KL, Sargeant H, Hawkes AL. Acceptability of the Distress Thermometer and Problem List to community-based telephone cancer helpline operators, and to cancer patients and carers. BMC Cancer. 2011;11:46.CrossRefPubMedPubMedCentral
2.
go back to reference Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S. Screening cancer patients’ families with the distress thermometer (DT): a validation study. Psychooncology. 2008;17:959–66.CrossRefPubMed Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S. Screening cancer patients’ families with the distress thermometer (DT): a validation study. Psychooncology. 2008;17:959–66.CrossRefPubMed
3.
go back to reference Donovan KA, Grassi L, McGinty HL, Jacobsen PB. Validation of the distress thermometer worldwide: state of the science. Psychooncology. 2014;23:241–50.CrossRefPubMed Donovan KA, Grassi L, McGinty HL, Jacobsen PB. Validation of the distress thermometer worldwide: state of the science. Psychooncology. 2014;23:241–50.CrossRefPubMed
4.
go back to reference Mitchell AJ. Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders. J Clin Oncol. 2007;25:4670–81.CrossRefPubMed Mitchell AJ. Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders. J Clin Oncol. 2007;25:4670–81.CrossRefPubMed
5.
go back to reference Dolbeault S, Bredart A, Mignot V, Hardy P, Gauvain-Piquard A, Mandereau L, et al. Screening for psychological distress in two French cancer centers: feasibility and performance of the adapted distress thermometer. Palliat Support Care. 2008;6:107–17. Dolbeault S, Bredart A, Mignot V, Hardy P, Gauvain-Piquard A, Mandereau L, et al. Screening for psychological distress in two French cancer centers: feasibility and performance of the adapted distress thermometer. Palliat Support Care. 2008;6:107–17.
6.
go back to reference National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. Distress Management v2. 2014. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. Distress Management v2. 2014.
7.
go back to reference Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Volume 18. Washington DC: The National Academies Press; 2008. Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Volume 18. Washington DC: The National Academies Press; 2008.
8.
go back to reference Pirl WF, Fann JR, Greer JA, Braun I, Deshields T, Fulcher C, et al. Recommendations for the implementation of distress screening programs in cancer centers: Report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force. Cancer. 2014;120:2946–54. Pirl WF, Fann JR, Greer JA, Braun I, Deshields T, Fulcher C, et al. Recommendations for the implementation of distress screening programs in cancer centers: Report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force. Cancer. 2014;120:2946–54.
9.
go back to reference Bultz BD, Cummings GG, Grassi L, Travado L, Hoekstra-Weebers J, Watson M. 2013 President’s plenary international psycho-oncology society: Embracing the IPOS standards as a means of enhancing comprehensive cancer care. Psychooncology. 2014;23:1073–8.CrossRefPubMed Bultz BD, Cummings GG, Grassi L, Travado L, Hoekstra-Weebers J, Watson M. 2013 President’s plenary international psycho-oncology society: Embracing the IPOS standards as a means of enhancing comprehensive cancer care. Psychooncology. 2014;23:1073–8.CrossRefPubMed
10.
go back to reference Carlson LE. Screening alone is not enough: the importance of appropriate triage, referral, and evidence-based treatment of distress and common problems. J Clin Oncol. 2013;31:3616–8.CrossRefPubMed Carlson LE. Screening alone is not enough: the importance of appropriate triage, referral, and evidence-based treatment of distress and common problems. J Clin Oncol. 2013;31:3616–8.CrossRefPubMed
12.
go back to reference Dolbeault S, Boistard B, Meuric J, Copel L, Brédart A. Screening for distress and supportive care needs during the initial phase of the care process: a qualitative description of a clinical pilot experiment in a French cancer center. Psychooncology. 2011;20:585–93.CrossRefPubMed Dolbeault S, Boistard B, Meuric J, Copel L, Brédart A. Screening for distress and supportive care needs during the initial phase of the care process: a qualitative description of a clinical pilot experiment in a French cancer center. Psychooncology. 2011;20:585–93.CrossRefPubMed
13.
go back to reference Grassi L, Rossi E, Caruso R, Nanni MG, Pedrazzi S, Sofritti S, et al. Educational intervention in cancer outpatient clinics on routine screening for emotional distress: an observational study. Psychooncology. 2011;20:669–74. Grassi L, Rossi E, Caruso R, Nanni MG, Pedrazzi S, Sofritti S, et al. Educational intervention in cancer outpatient clinics on routine screening for emotional distress: an observational study. Psychooncology. 2011;20:669–74.
14.
go back to reference Mitchell AJ, Chan M, Bhatti H, Halton M, Grassi L, Johansen C, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol. 2011;12:160–74. Mitchell AJ, Chan M, Bhatti H, Halton M, Grassi L, Johansen C, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol. 2011;12:160–74.
15.
go back to reference Waller A, Williams A, Groff SL, Bultz BD, Carlson LE. Screening for distress, the sixth vital sign: Examining self-referral in people with cancer over a one-year period. Psychooncology. 2013;22:388–95.PubMed Waller A, Williams A, Groff SL, Bultz BD, Carlson LE. Screening for distress, the sixth vital sign: Examining self-referral in people with cancer over a one-year period. Psychooncology. 2013;22:388–95.PubMed
16.
go back to reference Tuinman MA, Gazendam-Donofrio SM, Hoekstra-Weebers JE. Screening and referral for psychosocial distress in oncologic practice: use of the Distress Thermometer. Cancer. 2008;113:870–8.CrossRefPubMed Tuinman MA, Gazendam-Donofrio SM, Hoekstra-Weebers JE. Screening and referral for psychosocial distress in oncologic practice: use of the Distress Thermometer. Cancer. 2008;113:870–8.CrossRefPubMed
17.
go back to reference Söllner W, Maislinger S, König A, DeVries A, Lukas P. Providing psychosocial support for breast cancer patients based on screening for distress within a consultation - liaison service. Psychooncology. 2004;897(September):893–7. Söllner W, Maislinger S, König A, DeVries A, Lukas P. Providing psychosocial support for breast cancer patients based on screening for distress within a consultation - liaison service. Psychooncology. 2004;897(September):893–7.
18.
go back to reference Merckaert I, Libert Y, Messin S, Milani M, Slachmuylder J-L, Razavi D. Cancer patients’ desire for psychological support: prevalence and implications for screening patients’ psychological needs. Psychooncology. 2010;19:141–9.CrossRefPubMed Merckaert I, Libert Y, Messin S, Milani M, Slachmuylder J-L, Razavi D. Cancer patients’ desire for psychological support: prevalence and implications for screening patients’ psychological needs. Psychooncology. 2010;19:141–9.CrossRefPubMed
19.
go back to reference Baker-Glenn EA, Park B, Granger L, Symonds P, Mitchell AJ. Desire for psychological support in cancer patients with depression or distress: validation of a simple help question. Psychooncology. 2011;20:525–31.CrossRefPubMed Baker-Glenn EA, Park B, Granger L, Symonds P, Mitchell AJ. Desire for psychological support in cancer patients with depression or distress: validation of a simple help question. Psychooncology. 2011;20:525–31.CrossRefPubMed
20.
go back to reference Ellis J, Lin J, Walsh A, Lo C, Shepherd FA, Moore M, et al. Predictors of referral for specialized psychosocial oncology care in patients with metastatic cancer: the contributions of age, distress, and marital status. J Clin Oncol. 2009;27:699–705. Ellis J, Lin J, Walsh A, Lo C, Shepherd FA, Moore M, et al. Predictors of referral for specialized psychosocial oncology care in patients with metastatic cancer: the contributions of age, distress, and marital status. J Clin Oncol. 2009;27:699–705.
21.
go back to reference Nekolaichuk CL, Cumming C, Turner J, Yushchyshyn A, Sela R. Referral patterns and psychosocial distress in cancer patients accessing a psycho-oncology counseling service. Psychooncology. 2011;20:326–32.CrossRefPubMed Nekolaichuk CL, Cumming C, Turner J, Yushchyshyn A, Sela R. Referral patterns and psychosocial distress in cancer patients accessing a psycho-oncology counseling service. Psychooncology. 2011;20:326–32.CrossRefPubMed
22.
go back to reference Curry C, Cossich T, Matthews JP, Beresford J, McLachlan S A. Uptake of psychosocial referrals in an outpatient cancer setting: Improving service accessibility via the referral process. Support Care Cancer 2002; 10:549–555. Curry C, Cossich T, Matthews JP, Beresford J, McLachlan S A. Uptake of psychosocial referrals in an outpatient cancer setting: Improving service accessibility via the referral process. Support Care Cancer 2002; 10:549–555.
23.
go back to reference Eakin EG, Strycker LA. Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psychooncology. 2001;10(February 1999):103–13.CrossRefPubMed Eakin EG, Strycker LA. Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psychooncology. 2001;10(February 1999):103–13.CrossRefPubMed
24.
go back to reference Mehnert A, Koch U. Psychosocial care of cancer patients--international differences in definition, healthcare structures, and therapeutic approaches. Support Care Cancer. 2005;13:579–88.CrossRefPubMed Mehnert A, Koch U. Psychosocial care of cancer patients--international differences in definition, healthcare structures, and therapeutic approaches. Support Care Cancer. 2005;13:579–88.CrossRefPubMed
25.
go back to reference Jones R, Regan M, Ristevski E, Breen S. Patients’ perception of communication with clinicians during screening and discussion of cancer supportive care needs. Patient Educ Couns. 2011;85:e209–15.CrossRefPubMed Jones R, Regan M, Ristevski E, Breen S. Patients’ perception of communication with clinicians during screening and discussion of cancer supportive care needs. Patient Educ Couns. 2011;85:e209–15.CrossRefPubMed
26.
go back to reference Bultz BD, Groff SL, Fitch M, Blais MC, Howes J, Levy K, et al. Implementing screening for distress, the 6th vital sign: a Canadian strategy for changing practice. Psychooncology. 2011;20:463–9. Bultz BD, Groff SL, Fitch M, Blais MC, Howes J, Levy K, et al. Implementing screening for distress, the 6th vital sign: a Canadian strategy for changing practice. Psychooncology. 2011;20:463–9.
27.
go back to reference Dilworth S, Higgins I, Parker V, Kelly B, Turner J. Patient and health professional’s perceived barriers to the delivery of psychosocial care to adults with cancer: a systematic review. Psychooncology. 2014;23:601–12.CrossRefPubMed Dilworth S, Higgins I, Parker V, Kelly B, Turner J. Patient and health professional’s perceived barriers to the delivery of psychosocial care to adults with cancer: a systematic review. Psychooncology. 2014;23:601–12.CrossRefPubMed
28.
go back to reference Mehnert A, Müller D, Lehmann C, Koch U. Die deutsche Version des NCCN Distress-Thermometers. Zeitschrift für Psychiatr Psychol und Psychother. 2006;54:213–23. Mehnert A, Müller D, Lehmann C, Koch U. Die deutsche Version des NCCN Distress-Thermometers. Zeitschrift für Psychiatr Psychol und Psychother. 2006;54:213–23.
29.
go back to reference Herrmann C, Buss U, Snaith R. Hospital Anxiety and Depression Scale - Deutsche Version (HADS-D). Manual. Bern: Hans Huber; 1995. Herrmann C, Buss U, Snaith R. Hospital Anxiety and Depression Scale - Deutsche Version (HADS-D). Manual. Bern: Hans Huber; 1995.
30.
go back to reference Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed
31.
go back to reference Herschbach P, Berg P, Dankert A, Duran G, Engst-Hastreiter U, Waadt S, et al. Fear of progression in chronic diseases: psychometric properties of the fear of progression questionnaire. J Psychosom Res. 2005;58:505–11. Herschbach P, Berg P, Dankert A, Duran G, Engst-Hastreiter U, Waadt S, et al. Fear of progression in chronic diseases: psychometric properties of the fear of progression questionnaire. J Psychosom Res. 2005;58:505–11.
32.
go back to reference Mehnert A, Herschbach P, Berg P, Henrich G, Koch U. Progredienzangst bei Brustkrebspatientinnen - Validierung der Kurzform des Progredienzangstfragebogens PA-F-KF/ Fear of progression in breast cancer patients – validation of the short form of the Fear of Progression Questionnaire (FoP-Q-SF). Z Psychosom Med Psychother. 2006;52:274–88.PubMed Mehnert A, Herschbach P, Berg P, Henrich G, Koch U. Progredienzangst bei Brustkrebspatientinnen - Validierung der Kurzform des Progredienzangstfragebogens PA-F-KF/ Fear of progression in breast cancer patients – validation of the short form of the Fear of Progression Questionnaire (FoP-Q-SF). Z Psychosom Med Psychother. 2006;52:274–88.PubMed
33.
go back to reference Hinz A, Mehnert A, Ernst J, Herschbach P, Schulte T. Fear of progression in patients 6 months after cancer rehabilitation—a validation study of the fear of progression questionnaire FoP-Q-12. Support Care Cancer. 2015;23:1579–87.CrossRefPubMed Hinz A, Mehnert A, Ernst J, Herschbach P, Schulte T. Fear of progression in patients 6 months after cancer rehabilitation—a validation study of the fear of progression questionnaire FoP-Q-12. Support Care Cancer. 2015;23:1579–87.CrossRefPubMed
34.
go back to reference Yanez B, Pearman T, Lis CG, Beaumont JL, Cella D. The FACT-G7: A rapid version of the functional assessment of cancer therapy-general (FACT-G) for monitoring symptoms and concerns in oncology practice and research. Ann Oncol. 2013;24:1073–8.CrossRefPubMed Yanez B, Pearman T, Lis CG, Beaumont JL, Cella D. The FACT-G7: A rapid version of the functional assessment of cancer therapy-general (FACT-G) for monitoring symptoms and concerns in oncology practice and research. Ann Oncol. 2013;24:1073–8.CrossRefPubMed
35.
go back to reference Mitchell PH, Powell L, Blumenthal J, Norten J, Ironson G, Pitula CR, et al. A short social support measure for patients recovering From myocardial infarction: The ENRICHD social s. J Cardiopulm Rehabil Prev. 2003;23:398–403. Mitchell PH, Powell L, Blumenthal J, Norten J, Ironson G, Pitula CR, et al. A short social support measure for patients recovering From myocardial infarction: The ENRICHD social s. J Cardiopulm Rehabil Prev. 2003;23:398–403.
36.
go back to reference Kendel F, Spaderna H, Sieverding M, Dunkel A, Lehmkuhl E, Hetzer R, et al. Eine deutsche Adaptation des ENRICHD Social Support Inventory (ESSI). Diagnostica. 2011;57:99–106. Kendel F, Spaderna H, Sieverding M, Dunkel A, Lehmkuhl E, Hetzer R, et al. Eine deutsche Adaptation des ENRICHD Social Support Inventory (ESSI). Diagnostica. 2011;57:99–106.
37.
go back to reference Harrell Jr FE. Regression modeling strategies. 1st ed.. New York: Springer-Verlag; 2001. Harrell Jr FE. Regression modeling strategies. 1st ed.. New York: Springer-Verlag; 2001.
38.
go back to reference Steyerberg EW. Clinical prediction models. A practical approach to development, validation, and updating. New York: Springer-Verlag; 2009. Steyerberg EW. Clinical prediction models. A practical approach to development, validation, and updating. New York: Springer-Verlag; 2009.
39.
go back to reference Mayring P. Qualitative Inhaltsanalyse. Grundlagen Und Techniken. 10. Auflag. Weinheim: Beltz; 2008. Mayring P. Qualitative Inhaltsanalyse. Grundlagen Und Techniken. 10. Auflag. Weinheim: Beltz; 2008.
40.
go back to reference Clover KA, Mitchell AJ, Britton B, Carter G. Why do oncology outpatients who report emotional distress decline help? Psychooncology. 2015;24:812–8.CrossRefPubMed Clover KA, Mitchell AJ, Britton B, Carter G. Why do oncology outpatients who report emotional distress decline help? Psychooncology. 2015;24:812–8.CrossRefPubMed
41.
go back to reference Mitchell AJ, Kaar S, Coggan C, Herdman J. Acceptability of common screening methods used to detect distress and related mood disorders-preferences of cancer specialists and non-specialists. Psychooncology. 2008:226–36. Mitchell AJ, Kaar S, Coggan C, Herdman J. Acceptability of common screening methods used to detect distress and related mood disorders-preferences of cancer specialists and non-specialists. Psychooncology. 2008:226–36.
42.
go back to reference Baker P, Beesley H, Dinwoodie R, Fletcher I, Ablett J, Holcombe C, et al. ‘You’re putting thoughts into my head’: a qualitative study of the readiness of patients with breast, lung or prostate cancer to address emotional needs through the first 18 months after diagnosis. Psychooncology. 2013;22:1402–10. Baker P, Beesley H, Dinwoodie R, Fletcher I, Ablett J, Holcombe C, et al. ‘You’re putting thoughts into my head’: a qualitative study of the readiness of patients with breast, lung or prostate cancer to address emotional needs through the first 18 months after diagnosis. Psychooncology. 2013;22:1402–10.
43.
go back to reference Epstein R, Street R. Patient-centered communication in cancer care: promoting healing and reducing suffering. Bethesda: National Institutes of Health, NIH, Publication No. 07-6225. 2007. Epstein R, Street R. Patient-centered communication in cancer care: promoting healing and reducing suffering. Bethesda: National Institutes of Health, NIH, Publication No. 07-6225. 2007.
44.
go back to reference Mitchell AJ, Lord K, Slattery J, Grainger L, Symonds P. How feasible is implementation of distress screening by cancer clinicians in routine clinical care? Cancer. 2012;118:6260–9.CrossRefPubMed Mitchell AJ, Lord K, Slattery J, Grainger L, Symonds P. How feasible is implementation of distress screening by cancer clinicians in routine clinical care? Cancer. 2012;118:6260–9.CrossRefPubMed
45.
go back to reference Mosher CE, Winger JG, Hanna N, Jalal SI, Fakiris AJ, Einhorn LH, et al. Barriers to mental health service use and preferences for addressing emotional concerns among lung cancer patients. Psychooncology. 2014;23:812–9. Mosher CE, Winger JG, Hanna N, Jalal SI, Fakiris AJ, Einhorn LH, et al. Barriers to mental health service use and preferences for addressing emotional concerns among lung cancer patients. Psychooncology. 2014;23:812–9.
46.
go back to reference Neumann M, Galushko M, Karbach U, Goldblatt H, Visser A, Wirtz M, et al. Barriers to using psycho-oncology services: a qualitative research into the perspectives of users, their relatives, non-users, physicians, and nurses. Support Care Cancer. 2010;18:1147–56. Neumann M, Galushko M, Karbach U, Goldblatt H, Visser A, Wirtz M, et al. Barriers to using psycho-oncology services: a qualitative research into the perspectives of users, their relatives, non-users, physicians, and nurses. Support Care Cancer. 2010;18:1147–56.
Metadata
Title
Understanding why cancer patients accept or turn down psycho-oncological support: a prospective observational study including patients’ and clinicians’ perspectives on communication about distress
Authors
Diana Zwahlen
Theresa Tondorf
Sacha Rothschild
Michael T. Koller
Christoph Rochlitz
Alexander Kiss
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Cancer / Issue 1/2017
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-017-3362-x

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