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.
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References
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
WHO Definition of Palliative Care http://www.who.int/cancer/palliative/definition/en/ Accessed 7 April 2014
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
Goldberg L (2004) Psychological issues in palliative care: depression, anxiety, agitation and delirium. Clin Fam Pract 6:441–470
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
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
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
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
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
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
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
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
Hudson PL, Zordan R, Trauer T (2011) Research priorities associated with family caregivers in palliative care: international perspectives. J Palliat Med 14:397–401
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
Calman KC (1994) Quality of life in cancer patients: an hypothesis. J Med Ethics 10:124–127
Cella DF (1996) Quality of life outcomes: measurement and validation. Oncology (Williston Park) 10(11 Suppl):233–246
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
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
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
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
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
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
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
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
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
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
WHO (2014) Process of translation and adaptation of instruments. http://www.who.int/substance_abuse/research_tools/translation/. Accessed 7 April 2014
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
Schrank B, Woppmann A, Sibitz I, Lauber C (2011) Development and validation of an integrative scale to assess hope. Health Expect 14:417–428
Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41:209–218
Creamer M, Bell R, Failla S (2003) Psychometric properties of the Impact of Event Scale-Revised. Behav Res Ther 41(12):1489–1496
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370
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
Enders CK. (2010) Applied missing data analysis, Guilford Press
Kubinger KD (2009) Psychologische Diagnostik: Theorie und Praxis psychologischen Diagnostizierens, vol. 2: Hogrefe-Verlag
Bortz J Doringer N (2006) Forschungsmethoden und Evaluation für Human- und Sozialwissenschaftler, vol. 4: Springer Verlag
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
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
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
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
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
Stajduhar KI, Davies B (2005) Variations in and factors influencing family members’ decisions for palliative home care. Palliat Med 19:21–32
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
Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 IARC Publications
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
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
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
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
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We kindly thank the staff and the family members at the cooperating centres for their support and participation.
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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
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DOI: https://doi.org/10.1007/s00520-014-2272-6