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Assessment of palliative care cancer patients’ most important concerns

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Abstract

Aims

Patients in the palliative care setting have a number of concerns not necessarily connected to their medical problems, such as spiritual and relationship issues. When these problems are not properly assessed and addressed, they may become a significant source of distress for patients and families. The aims of the present study were to assess the concerns of patients attending a palliative care clinic, to examine physicians’ ratings of patient concerns, to access the concordance between patients’ and physicians’ ratings, and to assess the association between patients’ concerns and their level of distress.

Methods

We evaluated 137 patients attending a symptom control and palliative care clinic. Patients completed the Concerns Checklist, Hospital Anxiety and Depression Scale, and Cancer Behavior Inventory at the beginning of their visit. The Concerns Checklist was completed by the patient’s clinic physician immediately after the visit and was used to estimate how accurate the physician was in identifying patients’ concerns. We examined the correlation between the total number of patient concerns and their levels of anxiety, mood disturbance, and self-efficacy.

Results

Patients were most concerned about loss of function, the future, and caring for themselves. Concordance between physician and patient rating of concerns was poor (all kappas, 0.26 or lower). Higher levels of patient concerns were associated with greater anxiety (r = 0.52) and depressive symptoms (r = 0.40) and lower self-efficacy (r = −0.37).

Conclusions

There was generally poor concordance between patients reporting of their concerns and physicians reporting of the patients’ concerns. In addition, patients’ with more concerns also had higher levels of anxiety and depressive symptoms. Thus, it is important to find strategies to more accurately identify patients’ concerns, so that they can be adequately addressed.

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References

  1. [No authors listed] (1998) Approaching death: improving care at the end of life—a report of the Institute of Medicine. Health Serv Res 33:1–3

  2. [No authors listed] (1998) Cancer care during the last phase of life. J Clin Oncol 16:1986–1996

    Google Scholar 

  3. [No authors listed] (2004) NIH State-of-the-Science Conference Statement on improving end-of-life care. NIH Consens State Sci Statements 21:1–26

  4. Allenby A, Matthews J, Beresford J, McLachlan SA (2002) The application of computer touch-screen technology in screening for psychosocial distress in an ambulatory oncology setting. Eur J Cancer Care (Engl) 11:245–253

    Article  CAS  Google Scholar 

  5. Barczak P, Kane N, Andrews S, Congdon AM, Clay JC, Betts T (1988) Patterns of psychiatric morbidity in a genito-urinary clinic. A validation of the Hospital Anxiety Depression scale (HAD). Br J Psychiatry 152:698–700

    Article  PubMed  CAS  Google Scholar 

  6. Boberg EW, Gustafson DH, Hawkins RP, Offord KP, Koch C, Wen KY, Kreutz K, Salner A (2003) Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Educ Couns 49:233–242

    Article  PubMed  Google Scholar 

  7. Brown R, Butow PN, Boyer MJ, Tattersall MH (1999) Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking. Br J Cancer 80:242–248

    Article  PubMed  CAS  Google Scholar 

  8. Bruera E, Michaud M, Vigano A, Neumann CM, Watanabe S, Hanson J (2001) Multidisciplinary symptom control clinic in a cancer center: a retrospective study. Support Care Cancer 9:162–168

    Article  PubMed  CAS  Google Scholar 

  9. Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S (2001) Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 19:2883–2885

    PubMed  CAS  Google Scholar 

  10. Bruera E, Willey JS, Palmer JL, Rosales M (2002) Treatment decisions for breast carcinoma: patient preferences and physician perceptions. Cancer 94:2076–2080

    Article  PubMed  Google Scholar 

  11. Cella D (1998) Factors influencing quality of life in cancer patients: anemia and fatigue. Semin Oncol 25:43–46

    PubMed  CAS  Google Scholar 

  12. Cull A, Fry A, Rush R, Steel CM (2001) Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic. Br J Cancer 84:594–599

    Article  PubMed  CAS  Google Scholar 

  13. Detmar SB, Aaronson NK (1998) Quality of life assessment in daily clinical oncology practice: a feasibility study. Eur J Cancer 34:1181–1186

    Article  PubMed  CAS  Google Scholar 

  14. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK (2002) Health-related quality-of-life assessments and patient–physician communication: a randomized controlled trial. JAMA 288:3027–3034

    Article  PubMed  Google Scholar 

  15. Foley KM (2005) Improving palliative care for cancer: a national and international perspective. Gynecol Oncol 99:S213–214

    Article  PubMed  Google Scholar 

  16. Greisinger AJ, Lorimor RJ, Aday LA, Winn RJ, Baile WF (1997) Terminally ill cancer patients. Their most important concerns. Cancer Pract 5:147–154

    PubMed  CAS  Google Scholar 

  17. Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH (2007) Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage 34:190–200

    Article  PubMed  Google Scholar 

  18. Harrison J, Maguire P, Pitceathly C (1995) Confiding in crisis: gender differences in pattern of confiding among cancer patients. Soc Sci Med 41:1255–1260

    Article  PubMed  CAS  Google Scholar 

  19. Heaven CM, Maguire P (1998) The relationship between patients’ concerns and psychological distress in a hospice setting. Psychooncology 7:502–507

    Article  PubMed  CAS  Google Scholar 

  20. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174:627–633

    PubMed  Google Scholar 

  21. Johnston M, Pollard B, Hennessey P (2000) Construct validation of the hospital anxiety and depression scale with clinical populations. J Psychosom Res 48:579–584

    Article  PubMed  CAS  Google Scholar 

  22. Kahn SB, Houts PS, Harding SP (1992) Quality of life and patients with cancer: a comparative study of patient versus physician perceptions and its implications for cancer education. J Cancer Educ 7:241–249

    Article  PubMed  CAS  Google Scholar 

  23. Kerr J, Engel J, Schlesinger-Raab A, Sauer H, Holzel D (2003) Communciation, quality of life and age: results of a 5-year prospective study in breast cancer patients. Ann Oncol 14:421–427

    Article  PubMed  CAS  Google Scholar 

  24. Knobel H, Loge JH, Brenne E, Fayers P, Hjermstad MJ, Kaasa S (2003) The validity of EORTC QLQ-C30 fatigue scale in advanced cancer patients and cancer survivors. Palliat Med 17:664–672

    PubMed  Google Scholar 

  25. Kutner JS, Steiner JF, Corbett KK, Jahnigen DW, Barton PL (1999) Information needs in terminal illness. Soc Sci Med 48:1341–1352

    Article  PubMed  CAS  Google Scholar 

  26. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174

    Article  PubMed  CAS  Google Scholar 

  27. Le T, Leis A, Pahwa P, Wright K, Ali K, Reeder B (2003) Quality-of-life issues in patients with ovarian cancer and their caregivers: a review. Obstet Gynecol Surv 58:749–758

    Article  PubMed  CAS  Google Scholar 

  28. Lidstone V, Butters E, Seed PT, Sinnott C, Beynon T, Richards M (2003) Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliat Med 17:588–595

    Article  PubMed  CAS  Google Scholar 

  29. Maguire P (2002) Improving the recognition of concerns and affective disorders in cancer patients. Ann Oncol 13(Suppl 4):177–181

    PubMed  Google Scholar 

  30. Merluzzi TV, Martinez Sanchez MA (1997) Assessment of self-efficacy and coping with cancer: development and validation of the cancer behavior inventory. Health Psychol 16:163–170

    Article  PubMed  CAS  Google Scholar 

  31. Merluzzi TV, Nairn RC, Hegde K, Martinez Sanchez MA, Dunn L (2001) Self-efficacy for coping with cancer: revision of the Cancer Behavior Inventory (version 2.0). Psychooncology 10:206–217

    Article  PubMed  CAS  Google Scholar 

  32. Moorey S, Greer S, Watson M, Gorman C, Rowden L, Tunmore R, Robertson B, Bliss J (1991) The factor structure and factor stability of the hospital anxiety and depression scale in patients with cancer [see comments]. Comment in:Br J Psychiatry. 1991 Aug; 159:298. Br J Psychiatry 158:255–259

    Article  PubMed  CAS  Google Scholar 

  33. Nekolaichuk CL, Bruera E, Spachynski K, MacEachern T, Hanson J, Maguire TO (1999) A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med 13:311–323

    Article  PubMed  CAS  Google Scholar 

  34. Osoba D (1999) What has been learned from measuring health-related quality of life in clinical oncology. Eur J Cancer 35:1565–1570

    Article  PubMed  CAS  Google Scholar 

  35. Parle M, Jones B, Maguire P (1996) Maladaptive coping and affective disorders among cancer patients. Psychol Med 26:735–744

    Article  PubMed  CAS  Google Scholar 

  36. Passik SD, Kirsh KL, 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. J Pain Symptom Manage 24:481–493

    Article  PubMed  Google Scholar 

  37. Penson DF, Litwin MS, Aaronson NK (2003) Health related quality of life in men with prostate cancer. J Urol 169:1653–1661

    Article  PubMed  Google Scholar 

  38. Podmore EJ, Bingham LC, Roberts KM, Selby PJ, Wright P, Velikova G (2009) Routine assessment of social difficulties in cancer patients: are we opening Pandora’s box? Support Care Cancer 17:1425–1432

    Article  PubMed  Google Scholar 

  39. Sharpe M, Strong V, Allen K, Rush R, Postma K, Tulloh A, Maguire P, House A, Ramirez A, Cull A (2004) Major depression in outpatients attending a regional cancer centre: screening and unmet treatment needs. Br J Cancer 90:314–320

    Article  PubMed  CAS  Google Scholar 

  40. Smith AB, Selby PJ, Velikova G, Stark D, Wright EP, Gould A, Cull A (2002) Factor analysis of the Hospital Anxiety and Depression Scale from a large cancer population. Psychol Psychother: Theor Res Pract 75:165–176

    Article  Google Scholar 

  41. Snyder CF, Dy SM, Hendricks DE, Brahmer JR, Carducci MA, Wolff AC, Wu AW (2007) Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Support Care Cancer 15:1075–1085

    Article  PubMed  Google Scholar 

  42. Soothill K, Morris SM, Harman J, Francis B, Thomas C, McIllmurray MB (2001) The significant unmet needs of cancer patients: probing psychosocial concerns. Support Care Cancer 9:597–605

    Article  PubMed  CAS  Google Scholar 

  43. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284:2476–2482

    Article  PubMed  CAS  Google Scholar 

  44. Strasser F, Sweeney C, Willey J, Benisch-Tolley S, Palmer JL, Bruera E (2004) Impact of a half-day multidisciplinary symptom control and palliative care outpatient clinic in a comprehensive cancer center on recommendations, symptom intensity, and patient satisfaction: a retrospective descriptive study. J Pain Symptom Manage 27:481–491

    Article  PubMed  Google Scholar 

  45. Velikova G, Awad N, Coles-Gale R, Wright EP, Brown JM, Selby PJ (2008) The clinical value of quality of life assessment in oncology practice—a qualitative study of patient and physician views. Psychooncology 17:690–698

    Article  PubMed  Google Scholar 

  46. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ (2004) Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 22:714–724

    Article  PubMed  Google Scholar 

  47. Velikova G, Brown JM, Smith AB, Selby PJ (2002) Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology. Br J Cancer 86:51–59

    Article  PubMed  CAS  Google Scholar 

  48. Vickery CW, Blazeby JM, Conroy T, Johnson CD, Alderson D (2000) Development of an EORTC module to improve quality of life assessment in patients with gastric cancer. Br J Surg 87:362–373

    Article  Google Scholar 

  49. Wright EP, Selby PJ, Crawford M, Gillibrand A, Johnston C, Perren TJ, Rush R, Smith A, Velikova G, Watson K, Gould A, Cull A (2003) Feasibility and compliance of automated measurement of quality of life in oncology practice. J Clin Oncol 21:374–382

    Article  PubMed  CAS  Google Scholar 

  50. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S (2001) The prevalence of psychological distress by cancer site. Psychooncology 10:19–28

    Article  PubMed  CAS  Google Scholar 

  51. Zabora J, BrintzenhofeSzoc K, Jacobsen P, Curbow B, Piantadosi S, Hooker C, Owens A, Derogatis L (2001) A new psychosocial screening instrument for use with cancer patients. Psychosomatics 42:241–246

    Article  PubMed  CAS  Google Scholar 

  52. Zigmond A, Snaith R (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370

    Article  PubMed  CAS  Google Scholar 

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Correspondence to Walter F. Baile.

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Baile, W.F., Palmer, J.L., Bruera, E. et al. Assessment of palliative care cancer patients’ most important concerns. Support Care Cancer 19, 475–481 (2011). https://doi.org/10.1007/s00520-010-0839-4

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  • DOI: https://doi.org/10.1007/s00520-010-0839-4

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