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The relationship between unmet needs and distress amongst young people with cancer

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Abstract

Purpose

Most psychosocial research in cancer has been restricted to paediatric or older adult populations. This study aimed to explore psychological distress and unmet needs in adolescents and young adults (AYA) with cancer and identify predictors of distress among demographic and illness characteristics and supportive care needs.

Methods

Fifty-three patients between 16 and 30 years completed a cross-sectional survey, administered shortly after presentation to an AYA oncology service and within 4 months of diagnosis. Measures included the Beck Depression Inventory-Fast Screen (BDI-FS), State-Trait Anxiety Inventory-State Form (STAI-S) and the Supportive Care Needs Survey. Level of distress-related sypmtomatology in this population was based on previous work, whereby a cut-off score of 4 or greater was used for the BDI-FS, and one standard deviation above the sample population mean was used for the STAI-S.

Results

Prevalence of distress (25%) was lower than that found previously in AYA with cancer. Physical and daily living needs were the most frequently unmet needs overall, followed by psychological needs, health system and information needs and care and support needs. Lastly, being pre-treatment predicted increased depression and state anxiety, while having treatment post-surgery predicted reduced state anxiety. After controlling for treatment status, however, the main predictors of depression and state anxiety were physical and daily living needs and health system and information needs, respectively.

Conclusions

Lower levels of distress and unmet psychological needs were related to the few participants (17%) in this study who were pre-treatment, when distress was most likely. However, physical needs and information needs, which are almost inevitable throughout treatment and beyond, were more important predictors of distress. Further exploration must consider the psychosocial difficulties underlying this association and the needs of AYA at transitions between critical periods in their cancer journey (i.e., upon diagnosis, during treatment, etc.).

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References

  1. Australian Bureau of Statistics (2007) National Survey of Mental Health and Wellbeing: summary of results. Australian Bureau of Statistics, Canberra

    Google Scholar 

  2. Palmer L, Erickson S, Shaffer T, Koopman C, Amylon M, Steiner H (2000) Themes arising in group therapy for adolescents with cancer and their parents. International Journal of Rehabilitation and Health 5:43–54

    Article  Google Scholar 

  3. Palmer S, Mitchell A, Thompson K, Sexton M (2007) Unmet needs among adolescent cancer patients: a pilot study. Palliat Support Care 5:127–134

    Article  PubMed  Google Scholar 

  4. Thompson K, Palmer S, Dyson G (2009) Adolescents and young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs 13:207–212

    Article  PubMed  Google Scholar 

  5. Wilkinson J (2003) Young people with cancer—how should their care be organized? Eur J Cancer Care (Engl) 12:65–70

    Article  CAS  Google Scholar 

  6. Deimling GT, Kahana B, Bowman KF, Schaefer ML (2002) Cancer survivorship and psychological distress in later life. Psychooncology 11:479–494

    Article  PubMed  Google Scholar 

  7. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Supportive Care Review Group Cancer 88:226–237

    CAS  Google Scholar 

  8. Shankar S, Robison L, Jenney ME, Rockwood TH, Wu E, Feusner J, Friedman D, Kane RL, Bhatia S (2005) Health-related quality of life in young survivors of childhood cancer using the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics 115:435–442

    Article  PubMed  Google Scholar 

  9. Allen R, Newman SP, Souhami RL (1997) Anxiety and depression in adolescent cancer: findings in patients and parents at the time of diagnosis. Eur J Cancer 33:1250–1255

    Article  PubMed  CAS  Google Scholar 

  10. Hedstrom M, Ljungman G, von Essen L (2005) Perceptions of distress among adolescents recently diagnosed with cancer. J Pediatr Hematol Oncol 27:15–22

    Article  PubMed  Google Scholar 

  11. 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 

  12. Jorngarden A, Mattsson E, von Essen L (2007) Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: a prospective longitudinal study. Eur J Cancer 43:1952–1958

    Article  PubMed  Google Scholar 

  13. von Essen L, Enskar K, Kreuger A, Larsson B, Sjoden PO (2000) Self-esteem, depression and anxiety among Swedish children and adolescents on and off cancer treatment. Acta Paediatr 89:229–236

    Article  Google Scholar 

  14. Hinds PS, Billups CA, Cao X, Gattuso JS, Burghen E, West N, Rubnitz JE, Daw NC (2008) Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia. Eur J Oncol Nurs 13:156–163

    Article  PubMed  Google Scholar 

  15. Hedstrom M, Kreuger A, Ljungman G, Nygren P, von Essen L (2006) Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer. Pediatr Blood Cancer 46:773–779

    Article  PubMed  Google Scholar 

  16. Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J (2006) Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer 107:2915–2923

    Article  PubMed  Google Scholar 

  17. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A (2000) Evaluation of an instrument to assess the needs of patients with cancer. Supportive Care Review Group Cancer 88:217–225

    CAS  Google Scholar 

  18. Bonevski B, Sanson-Fisher R, Hersey P, Paul C, Foot G (2000) Assessing the perceived needs of patients attending an outpatient melanoma clinic. Journal of Psychosocial Oncology 17:101–118

    Article  Google Scholar 

  19. Zebrack B (2009) Information and service needs for young adult cancer survivors. Support Care Cancer 17:349–357

    Article  PubMed  Google Scholar 

  20. Zebrack BJ, Mills J, Weitzman TS (2007) Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv 1:137–145

    Article  PubMed  Google Scholar 

  21. American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders, fourth edition, text revision. American Psychiatric Association, Washington

    Book  Google Scholar 

  22. Beck AT, Steer RA, Brown GK (1996) Beck Depression Inventory—second edition: manual. The Psychological Corporation, San Antonio

    Google Scholar 

  23. Kumar G, Steer RA, Teitelman KB, Villacis L (2002) Effectiveness of Beck Depression Inventory-II subscales in screening for major depressive disorders in adolescent psychiatric inpatients. Assessment 9:164–170

    Article  PubMed  Google Scholar 

  24. Poole H, Bramwell R, Murphy P (2009) The utility of the Beck Depression Inventory Fast Screen (BDI-FS) in a pain clinic population. Eur J Pain 13:865–869

    Article  PubMed  Google Scholar 

  25. Goertzel L, Goertzel T (1991) Health locus of control, self-concept, and anxiety in pediatric cancer patients. Psychol Rep 68:531–540

    PubMed  CAS  Google Scholar 

  26. Spielberger CD, Gorsuch RL, Lushene R, Vagg PR, Jacobs GA (1983) State-Trait Anxiety Inventory for Adults—sampler set; manual, test, scoring key. Mind Garden, California

    Google Scholar 

  27. Krischer MM, Xu P (2008) Determinants of psychological functioning in patients undergoing radiotherapy: a descriptive study. J Psychosoc Oncol 26:1–13

    Article  PubMed  Google Scholar 

  28. Servitzoglou M, Papadatou D, Tsiantis I, Vasilatou-Kosmidis H (2008) Psychosocial functioning of young adolescent and adult survivors of childhood cancer. Support Care Cancer 16:29–36

    Article  PubMed  Google Scholar 

  29. McElduff P, Boyes A, Zucca A, Girgis A (2004) Supportive Care Needs Survey: a guide to administration, scoring and analysis. University of Newcastle, Newcastle

    Google Scholar 

  30. Cossich T, Schofield P, McLachlan SA (2004) Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res 13:1225–1233

    Article  PubMed  CAS  Google Scholar 

  31. Krefetz DG, Steer RA, Jermyn RT, Condoluci DV (2004) Screening HIV-infected patients with chronic pain for anxiety and mood disorders with the Beck Anxiety and Depression Inventory-Fast Screens for medical settings. J Clin Psychol Med Settings 11:283–289

    Article  Google Scholar 

  32. Tabachnick B, Fidell L (2001) Using multivariate statistics. Allyn & Bacon, Boston

    Google Scholar 

  33. Aranda S, Schofield P, Weih L, Yates P, Milne D, Faulkner R, Voudouris N (2005) Mapping the quality of life and unmet needs of urban women with metastatic breast cancer. Eur J Cancer Care (Engl) 14:211–222

    Article  CAS  Google Scholar 

  34. Lintz K, Moynihan C, Steginga S, Norman A, Eeles R, Huddart R, Dearnaley D, Watson M (2003) Prostate cancer patients’ support and psychological care needs: survey from a non-surgical oncology clinic. Psychooncology 12:769–783

    Article  PubMed  Google Scholar 

  35. Minstrell M, Winzenberg T, Rankin N, Hughes C, Walker J (2008) Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time. Psychooncology 17:58–65

    Article  PubMed  Google Scholar 

  36. Herzog CE (2005) Overview of sarcomas in the adolescent and young adult population. J Pediatr Hematol Oncol 27:215–218

    Article  PubMed  Google Scholar 

  37. Palmer S, Thomas D (2008) A practice framework for working with 15–25 year-old cancer patients treated within the adult health sector. onTrac@PeterMac: Victorian Adolescent & Young Adult Cancer Service, Melbourne

    Google Scholar 

  38. Chen ML, Chang HK (2004) Physical symptom profiles of depressed and nondepressed patients with cancer. Palliat Med 18:712–718

    Article  PubMed  Google Scholar 

  39. Sateia MJ, Lang BJ (2008) Sleep and cancer: recent developments. Curr Oncol Rep 10:309–318

    Article  PubMed  Google Scholar 

  40. Zaza C, Baine N (2002) Cancer pain and psychosocial factors: a critical review of the literature. J Pain Symptom Manage 24:526–542

    Article  PubMed  Google Scholar 

  41. Zebrack BJ, Zeltzer LK, Whitton J, Mertens AC, Odom L, Berkow R, Robison LL (2002) Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: a report from the Childhood Cancer Survivor Study. Pediatrics 110:42–52

    Article  PubMed  Google Scholar 

  42. Deshields TL, Tait RC, Manwaring J, Trinkaus KM, Naughton M, Hawkins J, Jeffe DB (2010) The Cancer Pain Inventory: preliminary development and validation. Psychooncology 19:684–692

    PubMed  Google Scholar 

  43. Ryan H, Schofield P, Cockburn J, Butow P, Tattersall M, Turner J, Girgis A, Bandaranayake D, Bowman D (2005) How to recognize and manage psychological distress in cancer patients. Eur J Cancer Care (Engl) 14:7–15

    Article  CAS  Google Scholar 

  44. Caplette-Gingras A, Savard J (2008) Depression in women with metastatic breast cancer: a review of the literature. Palliat Support Care 6:377–387

    Article  PubMed  Google Scholar 

  45. Reiche EM, Nunes SO, Morimoto HK (2004) Stress, depression, the immune system, and cancer. Lancet Oncol 5:617–625

    Article  PubMed  CAS  Google Scholar 

  46. Brown KW, Levy AR, Rosberger Z, Edgar L (2003) Psychological distress and cancer survival: a follow-up 10 years after diagnosis. Psychosom Med 65:636–643

    Article  PubMed  Google Scholar 

  47. Satin JR, Linden W, Phillips MJ (2009) Depression as a predictor of disease progression and mortality in cancer patients: a meta-analysis. Cancer 115:5349–5361

    Article  PubMed  Google Scholar 

  48. Soliman H, Ferrari A, Thomas D (2009) Sarcoma in the young adult population: an international view. Semin Oncol 36:227–236

    Article  PubMed  Google Scholar 

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Acknowledgements

The authors would like to acknowledge the other team members of onTrac@PeterMac, Victorian Adolescent and Young Adult Cancer Service, for their assistance with recruitment of participants and data collection. The authors would also like to thank Mrs Gaelle Dutu and Mr Carl Baravelli for their assistance with statistical analysis and Dr Felicity Sleeman for her considered feedback with this paper. Associate Professor David M. Thomas was supported by the National Health and Medical Research Council and Victorian Cancer Agency, Australia. Last, but not least, a very big thank you to the young people who participated in this study while enduring such challenging circumstances.

Conflict of Interest

The authors declare that, to the best of their knowledge, they have no conflict of interest in the authorship of this paper.

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Correspondence to Gavin J. Dyson.

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Dyson, G.J., Thompson, K., Palmer, S. et al. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer 20, 75–85 (2012). https://doi.org/10.1007/s00520-010-1059-7

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