Skip to main content

Advertisement

SpringerLink
Log in

Validation of the “Quality of Life in Life-Threatening Illness—Family Carer Version” (QOLLTI-F) in German-speaking carers of advanced cancer patients

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Background

Palliative care is a multidisciplinary approach that focuses on the improvement of quality of life (QOL) of patients as well as their families. QOL research in palliative care has so far primarily focused on patients, but interest in the QOL of their relatives is increasing. For instruments measuring QOL in relatives, data on psychometric properties are often limited, and so far, none has been available in German.

Objective

This study translates and validates the “Quality of Life in Life-Threatening Illness—Family Carer Version” (QOLLTI-F) in German-speaking carers of advanced cancer patients.

Methods

The QOLLTI-F was translated from English into German according to the World Health Organisation’s recommendations and validated in informal caregivers of terminally ill cancer patients of three Viennese hospitals. Hope was measured to assess concurrent validity; traumatic stress, anxiety, depression and subjective burden were measured to assess discriminant validity. Internal consistency, test-retest reliability and discriminative power were established. The scale’s factor structure was explored using a set of factor analyses.

Results

Of the 308 caregivers participating in the study, 42 completed the QOLLTI-F retest after a mean of 5 days. The internal consistency was α = 0.85 for the overall scale, Pearson correlation between test and retest lay at r = 0.92. As expected, a significant positive correlation was found with hope (r = 0.40) and significant negative correlations with traumatic stress (r = −0.41), depression (r = −0.51), anxiety (r = −0.52) and overall subjective burden (r = −0.55). The original seven-factor structure was not reproduced, but the scale showed a stable four-factor structure with factors capturing (1) feelings about carers’ own life, (2) professional care, (3) interaction with the patient and others and (3) carers’ outlook on life.

Conclusion

This study provides a sound translation and validation of the first QOL assessment tool for caregivers of palliative care patients in German. It also adds to the knowledge on the scale’s psychometric properties, which prove to be highly satisfactory. The QOLLTI-F may serve as an outcome measure in palliative care practice, clinical trials and epidemiological research.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM (2010) Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer 127:2893–2917

    Article  CAS  PubMed  Google Scholar 

  2. WHO Definition of Palliative Care http://www.who.int/cancer/palliative/definition/en/ Accessed 7 April 2014

  3. Costantini M, Musso M, Viterbori P, Bonci F, Del Mastro L, Garrone O, Venturini M, Morasso G (1999) Detecting psychological distress in cancer patients: validity of the Italian version of the Hospital Anxiety and Depression Scale. Support Care Cancer 7:121–127

    Article  CAS  PubMed  Google Scholar 

  4. Goldberg L (2004) Psychological issues in palliative care: depression, anxiety, agitation and delirium. Clin Fam Pract 6:441–470

    Article  Google Scholar 

  5. Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs 28:236–245

    Article  PubMed  Google Scholar 

  6. Chambers SK, Schover L, Nielsen L, Halford K, Clutton S, Gardiner RA, Dunn J, Occhipinti S (2013) Couple distress after localised prostate cancer. Support Care Cancer 21:2967–2976

    Article  PubMed  Google Scholar 

  7. Goebel S, von Harscher M, Mehdorn HM (2011) Comorbid mental disorders and psychosocial distress in patients with brain tumours and their spouses in the early treatment phase. Support Care Cancer 19:1797–1805

    Article  PubMed  Google Scholar 

  8. Hudson PL, Aranda S, Kristjanson LJ (2004) Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med 7:19–25

    Article  PubMed  Google Scholar 

  9. Grov EK, Dahl AA, Moum T, Fossa 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 

  10. Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19:1013–1025

    Article  PubMed  Google Scholar 

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

    Article  CAS  PubMed  Google Scholar 

  12. Park B, Kim SY, Shin JY, Sanson-Fisher RW, Shin DW, Cho J, Park JH (2013) Prevalence and predictors of anxiety and depression among family caregivers of cancer patients: a nationwide survey of patient-family caregiver dyads in Korea. Support Care Cancer 21:2799–2807

    Article  PubMed  Google Scholar 

  13. Hudson PL, Zordan R, Trauer T (2011) Research priorities associated with family caregivers in palliative care: international perspectives. J Palliat Med 14:397–401

    Article  PubMed  Google Scholar 

  14. Oechsle K, Goerth K, Bokemeyer C, Mehnert A (2013) Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians. Support Care Cancer 21:1955–1962

    Article  PubMed  Google Scholar 

  15. Calman KC (1994) Quality of life in cancer patients: an hypothesis. J Med Ethics 10:124–127

    Article  Google Scholar 

  16. Cella DF (1996) Quality of life outcomes: measurement and validation. Oncology (Williston Park) 10(11 Suppl):233–246

    CAS  Google Scholar 

  17. Cohen SR, Leis A (2002) What determines the quality of life of terminally ill cancer patients from their own perspective? J Palliat Care 18:48–58

    PubMed  Google Scholar 

  18. Soares A, Biasoli I, Scheliga A, Baptista RL, Brabo EP, Morais JC, Werneck GL, Spector N (2013) Association of social network and social support with health-related quality of life and fatigue in long-term survivors of Hodgkin lymphoma. Support Care Cancer 21:2153–2159

    Article  CAS  PubMed  Google Scholar 

  19. Citak E, Tulek Z (2013) Longitudinal quality of life in Turkish patients with head and neck cancer undergoing radiotherapy. Support Care Cancer 21:2171–2183

    Article  PubMed  Google Scholar 

  20. Gooden HM, White KJ (2013) Pancreatic cancer and supportive care—pancreatic exocrine insufficiency negatively impacts on quality of life. Support Care Cancer 21:1835–1841

    Article  CAS  PubMed  Google Scholar 

  21. Hung Y-C, Bauer J, Horsley P, Waterhouse M, Bashford J, Isenring E (2013) Changes in nutritional status, body composition, quality of life, and physical activity levels of cancer patients undergoing autologous peripheral blood stem cell transplantation. Support Care Cancer 21:1579–1586

    Article  PubMed  Google Scholar 

  22. Hudson PL, Trauer T, Graham S, Grande G, Ewing G, Payne S, Stajduhar KI, Thomas K (2010) A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 24:656–668

    Article  PubMed  Google Scholar 

  23. Cohen R, Leis AM, Kuhl D, Charbonneau C, Ritvo P, Ashbury FD (2006) QOLLTI-F: measuring family carer quality of life. Palliat Med 20:755–767

    Article  PubMed  Google Scholar 

  24. Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM (2003) Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manag 26:922–953

    Article  Google Scholar 

  25. Weitzner MA, Jacobsen PB, Wagner H Jr, Friedland J, Cox C (1999) The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8:55–63

    Article  CAS  PubMed  Google Scholar 

  26. Daveson BA, Alonso JP, Calanzani N, Ramsenthaler C, Gysels M, Antunes B, Moens K, Groeneveld EI, Albers G, Finetti S et al (2013) Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe. Eur J Public Health. doi:10.1093/eurpub/ckt029

    PubMed Central  PubMed  Google Scholar 

  27. WHO (2014) Process of translation and adaptation of instruments. http://www.who.int/substance_abuse/research_tools/translation/. Accessed 7 April 2014

  28. Herrmann C (1997) International experiences with the Hospital Anxiety and Depression Scale—a review of validation data and clinical results. J Psychosom Res 42:17–41

    Article  CAS  PubMed  Google Scholar 

  29. Schrank B, Woppmann A, Sibitz I, Lauber C (2011) Development and validation of an integrative scale to assess hope. Health Expect 14:417–428

    Article  PubMed  Google Scholar 

  30. Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41:209–218

    Article  CAS  PubMed  Google Scholar 

  31. Creamer M, Bell R, Failla S (2003) Psychometric properties of the Impact of Event Scale-Revised. Behav Res Ther 41(12):1489–1496

    Article  PubMed  Google Scholar 

  32. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370

    Article  CAS  PubMed  Google Scholar 

  33. Badia X, Monserrat S, Roset M, Herdman M (1999) Feasibility, validity and test-retest reliability of scaling methods for health states: the visual analogue scale and the time trade-off. Qual Life Res 8:303–310

    Article  CAS  PubMed  Google Scholar 

  34. Enders CK. (2010) Applied missing data analysis, Guilford Press

  35. Kubinger KD (2009) Psychologische Diagnostik: Theorie und Praxis psychologischen Diagnostizierens, vol. 2: Hogrefe-Verlag

  36. Bortz J Doringer N (2006) Forschungsmethoden und Evaluation für Human- und Sozialwissenschaftler, vol. 4: Springer Verlag

  37. Costello AB, Osborne JW (2005) Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Pract Assess Res Eval 10:1–9

    Google Scholar 

  38. Kim Y, Baker F, Spillers RL (2007) Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manag 34:294–304

    Article  Google Scholar 

  39. Friethriksdottir N, Saevarsdottir T, Halfdanardottir SI, Jonsdottir A, Magnusdottir H, Olafsdottir KL, Guethmundsdottir G, Gunnarsdottir 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 

  40. Song JI, Shin DW, Choi JY, Kang J, Baik YJ, Mo H, Park MH, Choi SE, Kwak JH, Kim EJ (2011) Quality of life and mental health in family caregivers of patients with terminal cancer. Support Care Cancer 19:1519–1526

    Article  PubMed  Google Scholar 

  41. Song JI, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN, Seo MJ, Hwang YH, Lim YK, Lee OK (2011) Quality of life and mental health in the bereaved family members of patients with terminal cancer. Psychooncology 21:1158–1166

    Article  PubMed  Google Scholar 

  42. Stajduhar KI, Davies B (2005) Variations in and factors influencing family members’ decisions for palliative home care. Palliat Med 19:21–32

    Article  PubMed  Google Scholar 

  43. Proot IM, Abu-Saad HH, Crebolder HF, Goldsteen M, Luker KA, Widdershoven GA (2003) Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci 17:113–121

    Article  PubMed  Google Scholar 

  44. Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 IARC Publications

  45. Schrank BBV, Tylee A, Coggins T, Rashid T, Slade M (2013) Conceptualising and measuring the well-being of people with psychosis: systematic review and narrative synthesis. Soc Sci Med 1:9–21

    Article  Google Scholar 

  46. Imayama I, Plotnikoff RC, Courneya KS, Johnson JA (2011) Determinants of quality of life in adults with type 1 and type 2 diabetes. Health Qual Life Outcome 9:115

    Article  Google Scholar 

  47. van Delft-Schreurs CC, van Bergen JJ, de Jongh MA, van de Sande P, Verhofstad MH, de Vries J (2013) Quality of life in severely injured patients depends on psychosocial factors rather than on severity or type of injury. Injury 45:320–326

    Article  PubMed  Google Scholar 

  48. Schrank BRS, Tylee A, Coggins T, Slade M (2013) From objectivity to subjectivity: conceptualisation and measurement of well-being in mental health. Neuropsych Lond 3:525–534

    Article  Google Scholar 

Download references

Acknowledgments

We kindly thank the staff and the family members at the cooperating centres for their support and participation.

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Division of Palliative Care, Department of Internal Medicine I, Medical University of Vienna, Währingergürtel 18-20, 1090, Vienna, Austria

    Sophie Schur, Eva Katharina Masel & Herbert Watzke

  2. Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria

    Alexandra Ebert-Vogel, Michaela Amering, Marie Neubauer, Ingrid Sibitz & Beate Schrank

  3. StatistikAmbulanz KG, Leobendorf, Austria

    Andrea Schrott

  4. Institute of Psychiatry, King’s College London, London, UK

    Beate Schrank

Authors
  1. Sophie Schur
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Alexandra Ebert-Vogel
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Michaela Amering
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Eva Katharina Masel
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Marie Neubauer
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Andrea Schrott
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Ingrid Sibitz
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Herbert Watzke
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Beate Schrank
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Beate Schrank.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Schur, S., Ebert-Vogel, A., Amering, M. et al. Validation of the “Quality of Life in Life-Threatening Illness—Family Carer Version” (QOLLTI-F) in German-speaking carers of advanced cancer patients. Support Care Cancer 22, 2783–2791 (2014). https://doi.org/10.1007/s00520-014-2272-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-014-2272-6

Keywords

Search

Navigation