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Assessing cancer-related distress in cancer patients and caregivers receiving outpatient psycho-oncological counseling

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Abstract

Purpose

The diagnosis of cancer, the symptoms of the illness and its treatment have an influence on how patients and their caregivers experience distress. However, data focusing on caregivers and their cancer-related distress in the outpatient setting is sparse. This study aimed to compare cancer-related distress of caregivers and patients and to derive implications for the system of outpatient psycho-oncological care.

Methods

One hundred thirty-eight patients and 102 caregivers receiving psycho-oncological counseling completed a standardized interview based on a self-assessment questionnaire (Questionnaire on Stress in Cancer Patients, FBK).

Results

Group comparisons for cancer-related distress revealed one statistically significant difference for the subscale ‘Fear’ of the FBK, Z = 2.308, p = .021, and d = .44. Caregivers showed higher cancer-related fear (M = 2.76, SD = 1.14) than patients (M = 2.41, SD = 1.29). There were no differences in ‘psychosomatic complaints’, ‘information deficit’, ‘restrictions in everyday life’, ‘social strains’, or the total score of the FBK.

Conclusions

Caregivers seem to experience cancer-related distress equal to or even more severely than patients themselves. Results suggest that there is a need for more low-threshold offers of outpatient psycho-oncological counseling for caregivers.

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References

  1. Aron A, Aron EN (1994) Statistics for psychology. Prentice Hall Publishers, Englewood Cliffs

    Google Scholar 

  2. Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834

    Article  PubMed  Google Scholar 

  3. Butow PN, Price MA, Bell ML, Webb PM, DeFazio A, Australian Ovarian Cancer Study G, Australian Ovarian Cancer Study Quality Of Life Study I, Friedlander M (2014) Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol 132:690–697

    Article  PubMed  Google Scholar 

  4. Chen SC, Lai YH, Liao CT, Huang BS, Lin CY, Fan KH, Chang JT (2014) Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery. Psychooncology 23:569–577

    Article  PubMed  Google Scholar 

  5. Cohen J (1988) Statistical power analysis for the behavioral sciences. Lawrence Earlbaum Associates, Hillsdale

    Google Scholar 

  6. Cui J, Song LJ, Zhou LJ, Meng H, Zhao JJ (2014) Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China. Eur J Cancer Care 23:562–569

    Article  CAS  Google Scholar 

  7. Davis-Ali SH, Chesler MA, Chesney BK (1993) Recognizing cancer as a family disease: worries and support reported by patients and spouses. Soc Work Health Care 19:45–65

    Article  CAS  PubMed  Google Scholar 

  8. Ellis J (2012) The impact of lung cancer on patients and carers. Chron Respir Dis 9:39–47

    Article  PubMed  Google Scholar 

  9. Feiten S, Friesenhahn V, Heymanns J, Kleboth K, Köppler H, Mergenthaler U, Thomalla J, van Roye C, Weide R (2013) Psychosocial distress in caregivers of patients with a metastatic solid tumor in routine care: a survey in a community based oncology group practice in Germany. Cancer Clin Oncol 2:1

    Google Scholar 

  10. Ferlay J, Soerjomataram I, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray F (2015) Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer 136:E359–E386

    Article  CAS  PubMed  Google Scholar 

  11. Frick E, Tyroller M, Panzer M (2007) Anxiety, depression and quality of life of cancer patients undergoing radiation therapy: a cross-sectional study in a community hospital outpatient centre. Eur J Cancer Care 16:130–136

    Article  CAS  Google Scholar 

  12. Friðriksdóttir N, Sævarsdóttir Þ, Halfdánardóttir SÍ, Jónsdóttir A, Magnúsdóttir H, Ólafsdóttir KL, Guðmundsdóttir G, Gunnarsdóttir S (2011) Family members of cancer patients: needs, quality of life and symptoms of anxiety and depression. Acta Oncol 50:252–258

    Article  PubMed  Google Scholar 

  13. Given BA, Given CW, Sherwood PR (2012) Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 10(2):57–64

    Article  PubMed  Google Scholar 

  14. Goren A, Gilloteau I, Lees M, DaCosta Dibonaventura M (2014) Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer 22:1637–1646

    Article  PubMed  Google Scholar 

  15. Grov EK, Dahl AA, Moum T, Fosså SD (2005) Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 16:1185–1191

    Article  CAS  PubMed  Google Scholar 

  16. Haun MW, Sklenarova H, Winkler EC, Huber J, Thomas M, Siminoff LA, Woll M, Brechtel A, Herzog W, Hartmann M (2014) Assessing patient-caregiver communication in cancer-a psychometric validation of the Cancer Communication Assessment Tool (CCAT-PF) in a German sample. Support Care Cancer 22:2473–2478

    Article  PubMed  Google Scholar 

  17. Herschbach P (2008) Screeningverfahren in der Psychoonkologie

  18. Herschbach P, Book K, Brandl T, Keller M, Marten-Mittag B (2008) The Basic Documentation for Psycho-Oncology (PO-Bado): an expert rating scale for the psychosocial experience of cancer patients. Onkologie 31:591–596

    PubMed  Google Scholar 

  19. Herschbach P, Keller M, Knight L, Brandl T, Huber B, Henrich G, Marten-Mittag B (2004) Psychological problems of cancer patients: a cancer distress screening with a cancer-specific questionnaire. Br J Cancer 91:504–511

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  20. Lutgendorf SK, Laudenslager ML (2009) Care of the caregiver: stress and dysregulation of inflammatory control in cancer caregivers. J Clin Oncol 27:2894–2895

    Article  PubMed  Google Scholar 

  21. McMullen CK, Schneider J, Altschuler A, Grant M, Hornbrook MC, Liljestrand P, Krouse RS (2014) Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies. Support Care Cancer 22:2401–2408

    Article  PubMed  PubMed Central  Google Scholar 

  22. Mehnert A, Koch U (2008) Psychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors. J Psychosom Res 64:383–391

    Article  PubMed  Google Scholar 

  23. Melin-Johansson C, Henoch I, Strang S, Browall M (2012) Living in the presence of death: an integrative literature review of relatives’ important existential concerns when caring for a severely ill family member. Open Nurs J 6:1–12

    Article  PubMed  PubMed Central  Google Scholar 

  24. Merckaert I, Libert Y, Lieutenant F, Moucheux A, Farvacques C, Slachmuylder JL, Razavi D (2013) Desire for formal psychological support among caregivers of patients with cancer: prevalence and implications for screening their needs. Psychooncology 22:1389–1395

    Article  PubMed  Google Scholar 

  25. Milbury K, Badr H, Fossella F, Pisters KM, Carmack CL (2013) Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer 21:2371–2379

    Article  PubMed  PubMed Central  Google Scholar 

  26. Moser MT, Kunzler A, Nussbeck F, Bargetzi M, Znoj HJ (2013) Higher emotional distress in female partners of cancer patients: prevalence and patient-partner interdependencies in a 3-year cohort. Psychooncology 22:2693–2701

    Article  PubMed  Google Scholar 

  27. Mosher CE, Champion VL, Hanna N, Jalal SI, Fakiris AJ, Birdas TJ, Okereke IC, Kesler KA, Einhorn LH, Given BA, Monahan PO, Ostroff JS (2013) Support service use and interest in support services among distressed family caregivers of lung cancer patients. Psychooncology 22:1549–1556

    Article  PubMed  Google Scholar 

  28. Mosher CE, Jaynes HA, Hanna N, Ostroff JS (2013) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437

    Article  PubMed  Google Scholar 

  29. Northouse L, A-l W, Given B, McCorkle R (2012) Psychosocial care for family caregivers of patients with cancer. J Clin Oncol 30(11):1227–34

    Article  PubMed  Google Scholar 

  30. Northouse LL, McCorkle R (2010) Spouse caregivers of cancer patients. In: Holland JC, Breitbart WS, Jacobsen PB, Lederberg MS, Loscalzo MJ, McCorkle R (eds) Psycho-oncology, 2nd edn. Oxford University Press, New York, pp 516–521

    Chapter  Google Scholar 

  31. Oechsle K, Goerth K, Bokemeyer C, Mehnert A (2013) Anxiety and depression in caregivers of terminally ill cancer patients: impact on their perspective of the patients’ symptom burden. J Palliat Med 16:1095–1101

    Article  PubMed  Google Scholar 

  32. Pauwels E, De Bourdeaudhuij I, Charlier C, Lechner L, Van Hoof E (2012) Psychosocial characteristics associated with breast cancer survivors’ intimate partners’ needs for information and support after primary breast cancer treatment. J Psychosoc Oncol 30:1–20

    Article  PubMed  Google Scholar 

  33. Pitceathly C, Maguire P (2003) The psychological impact of cancer on patients’ partners and other key relatives. Eur J Cancer 39:1517–1524

    Article  CAS  PubMed  Google Scholar 

  34. Price MA, Butow PN, Costa DS, King MT, Aldridge LJ, Fardell JE, DeFazio A, Webb PM (2010) Prevalence and predictors of anxiety and depression in women with invasive ovarian cancer and their caregivers. Med J Aust 193:S52–57

    PubMed  Google Scholar 

  35. Rehse B, Reuter E, Schneider B, Schwickerath J (2008) Inanspruchnahme und Akzeptanzvergleich eines psychoonkologischen Nachsorgeangebots bei von Brustkrebs betroffenen Frauen. Geburtsh Frauenheilk 68:907–914

    Article  Google Scholar 

  36. Rivera HR Jr (2009) Depression symptoms in cancer caregivers. Clin J Oncol Nurs 13:195–202

    Article  PubMed  Google Scholar 

  37. Ross S, Mosher C, Ronis-Tobin V, Hermele S, Ostroff J (2010) Psychosocial adjustment of family caregivers of head and neck cancer survivors. Support Care Cancer 18:171–178

    Article  PubMed  Google Scholar 

  38. Streiner DL, Norman GR (2008) Health measurement scales: a practical guide to their development and use. Oxford university press

  39. Utne I, Miaskowski C, Paul SM, Rustoen T (2013) Association between hope and burden reported by family caregivers of patients with advanced cancer. Support Care Cancer 21:2527–2535

    Article  PubMed  Google Scholar 

  40. van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Atienza AA, Phelan S, Finstad D, Rowland J (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology 20:44–52

    Article  PubMed  PubMed Central  Google Scholar 

  41. Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C (2013) Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho-Oncology 22:403–410

    PubMed  Google Scholar 

  42. Williams AL, McCorkle R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care 9:315–325

    Article  PubMed  Google Scholar 

  43. Zeissig SR, Singer S, Koch L, Blettner M, Arndt V (2015) Inanspruchnahme psychoonkologischer Versorgung im Krankenhaus und in Krebsberatungsstellen durch Brust-Darm- und Prostatakrebsüberlebende. Psychother Psych Med 65:177–182

    Google Scholar 

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Acknowledgments

The authors thank all patients and caregivers that participated in the study and the Berlin Cancer Society for their great cooperation.

Author information

Authors and Affiliations

  1. Charité Comprehensive Cancer Center, University of Berlin, Berlin, Germany

    Sabrina Gröpper, Anna Stickel & Ute Goerling

  2. Department of Psychology, Humboldt University of Berlin, Berlin, Germany

    Elke van der Meer

  3. Berlin School of Mind and Brain, Berlin, Germany

    Elke van der Meer

  4. Friedrich Schiller University, Jena, Germany

    Tom Landes

  5. Berliner Krebsgesellschaft e.V., Berlin, Germany

    Hubert Bucher

Authors
  1. Sabrina Gröpper
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  2. Elke van der Meer
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  3. Tom Landes
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  4. Hubert Bucher
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  5. Anna Stickel
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  6. Ute Goerling
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Corresponding author

Correspondence to Sabrina Gröpper.

Ethics declarations

A prospectively designed observational study protocol was chosen and approved by the ethics board at Charité Hospital (application number EA1/099/10). All patients and caregivers, who had an appointment at the BCS, received information about the study and were asked to participate. After written informed consent, we conducted the first assessment.

Conflict of interest

The authors wish to acknowledge the funding of this project by the Berlin Cancer Society: GOFF 200821, TAFF 201002. The authors had full access to all of the data in this study, take complete responsibility for the integrity of the data, and agree to make the data available to the journal to review, if needed.

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Gröpper, S., van der Meer, E., Landes, T. et al. Assessing cancer-related distress in cancer patients and caregivers receiving outpatient psycho-oncological counseling. Support Care Cancer 24, 2351–2357 (2016). https://doi.org/10.1007/s00520-015-3042-9

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  • DOI: https://doi.org/10.1007/s00520-015-3042-9

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