Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

Karin Oechsle, Anneke Ullrich, Gabriella Marx, Gesine Benze, Julia Heine, Lisa-Marie Dickel, Youyou Zhang, Feline Wowretzko, Kim Nikola Wendt, Friedemann Nauck, Carsten Bokemeyer, Corinna Bergelt, Karin Oechsle, Anneke Ullrich, Gabriella Marx, Gesine Benze, Julia Heine, Lisa-Marie Dickel, Youyou Zhang, Feline Wowretzko, Kim Nikola Wendt, Friedemann Nauck, Carsten Bokemeyer, Corinna Bergelt

Abstract

Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.

Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.

Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.

Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

Keywords: Anxiety; Cancer; Depression; Distress; Family caregiver; Palliative care; Regression analysis.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Study recruiting process and sample development

References

    1. World Health Organisation . National Cancer Control Programmes: policies and managerial guidelines. 2. Geneva: WHO; 2002.
    1. Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011;6:CD007617.
    1. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14:864–869. doi: 10.1089/jpm.2010.0413.
    1. Williams AL, McCorkle R. Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care. 2011;9:315–325. doi: 10.1017/S1478951511000265.
    1. Rosenberger C, Höcker A, Cartus M, Schulz-Kindermann F, Härter M, Mehnert A. Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol. 2012;62:185–194. doi: 10.1055/s-0032-1304994.
    1. Fujinami R, Sun V, Zachariah F, Uman G, Grant M, Ferrell B. Family caregivers’ distress levels related to quality of life, burden, and preparedness. Psychooncology. 2015;24:54–62. doi: 10.1002/pon.3562.
    1. Halkett GK, Lobb EA, Shaw T, Sinclair MM, Miller L, Hovey E, Nowak AK. Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma. Support Care Cancer. 2017;25:887–893. doi: 10.1007/s00520-016-3478-6.
    1. Areia NP, Fonseca G, Major S, Relvas AP. Psychological morbidity in family caregivers of people living with terminal cancer: prevalence and predictors. Palliat Support Care. 2018;26:1–8.
    1. Zwahlen D, Hagenbuch N, Jenewein J, Carley MI, Buchi S. Adopting a family approach to theory and practice: measuring distress in cancer patient-partner dyads with the distress thermometer. Psychooncology. 2011;20:394–403. doi: 10.1002/pon.1744.
    1. Götze H, Brähler E, Gansera L, Schnabel A, Köhler N. Exhaustion and overload of family caregivers of palliative cancer patients. Psychother Psychosom Med Psychol. 2015;65:66–72.
    1. Carolan CM, Smith A, Forbat L. Conceptualising psychological distress in families in palliative care: findings from a systematic review. Palliat Med. 2015;29:605–632. doi: 10.1177/0269216315575680.
    1. Rumpold T, Schur S, Amering M, Kirchheiner K, Masel EK, Watzke H, Schrank B. Informal caregivers of advanced-stage cancer patients: every second is at risk for psychiatric morbidity. Support Care Cancer. 2016;24:1975–1982. doi: 10.1007/s00520-015-2987-z.
    1. Oechsle K, Goerth K, Bokemeyer C, Mehnert A. Anxiety and depression in caregivers of terminally ill cancer patients: impact on their perspective of the patients’ symptom burden. J Palliat Med. 2013;16:1095–1101. doi: 10.1089/jpm.2013.0038.
    1. Götze H, Brähler E, Gansera L, Schnabel A, Gottschalk-Fleischer A, Köhler N. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death. Eur J Cancer Care (Engl) 2018;27:e12606. doi: 10.1111/ecc.12606.
    1. Nielsen MK, Neergaard MA, Jensen AB, Bro F, Guldin MB. Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study. Support Care Cancer. 2016;24:3057–3067.
    1. Nipp RD, El-Jawahri A, Fishbein JN, Gallagher ER, Stagl JM, Park ER, Jackson VA, Pirl WF, Greer JA, Temel JS. Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol. 2016;27:1607–1612. doi: 10.1093/annonc/mdw205.
    1. Jacobs JM, Shaffer KM, Nipp RD, Fishbein JN, MacDonald J, El-Jawahri A, Pirl WF, Jackson VA, Park ER, Temel JS, Greer JA. Distress is interdependent in patients and caregivers with newly diagnosed incurable cancers. Ann Behav Med. 2017;51:519–531. doi: 10.1007/s12160-017-9875-3.
    1. Dionne-Odom JN, Demark-Wahnefried W, Taylor RA, Rocque GB, Azuero A, Acemgil A, Martin MY, Astin M, Ejem D, Kvale E, Heaton K, Pisu M, Partridge EE, Bakitas MA. The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer. 2017;25:2437–2444. doi: 10.1007/s00520-017-3650-7.
    1. Hwang IC, Kim YS, Lee YJ, Choi YS, Hwang SW, Kim HM, Koh SJ. Factors associated with caregivers’ resilience in a terminal cancer care setting. Am J Hosp Palliat Care. 2018;35:677–683. doi: 10.1177/1049909117741110.
    1. Paek MS, Nightingale CL, Tooze JA, Milliron BJ, Weaver KE, Sterba KR. Contextual and stress process factors associated with head and neck cancer caregivers’ physical and psychological well-being. Eur J Cancer Care. 2018;27:e12833. doi: 10.1111/ecc.12833.
    1. Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16:31. doi: 10.1186/s12904-017-0206-z.
    1. National Comprehensive Cancer Center Network (NCCN) Distress management clinical practice guidelines. J Natl Compr Canc Net. 2003;1:344–374. doi: 10.6004/jnccn.2003.0031.
    1. Mehnert A, Müller D, Lehmann C, Koch U. The German version of the NCCN distress thermometer: validation of a screening instrument for assessmnet of psychosocial distress in cancer patients. Z Psychiat Psych Psychother. 2006;54:213–223.
    1. Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S. Screening cancer patients’ families with the distress thermometer (DT): a validation study. Psycho-Oncology. 2008;17:959–966. doi: 10.1002/pon.1320.
    1. Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Int Med. 2006;166:1092–1097. doi: 10.1001/archinte.166.10.1092.
    1. Löwe B, Decker O, Müller S, Brähler E, Schellberg D, Herzog W, Herzberg PY. Validation and standardization of the generalized anxiety disorder screener (GAD-7) in the general population. Med Care. 2008;46:266–274. doi: 10.1097/MLR.0b013e318160d093.
    1. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Int Med. 2001;16:606–613. doi: 10.1046/j.1525-1497.2001.016009606.x.
    1. Kocalevent R-D, Hinz A, Bräher E. Standardization of the depression screener patient health questionnaire (PHQ-9) in the general population. Gen Hosp Psychiat. 2013;35:551–555. doi: 10.1016/j.genhosppsych.2013.04.006.
    1. Aoun S, Bird S, Kristjanson LJ, Currow D. Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care. Palliat Med. 2010;24:674–681. doi: 10.1177/0269216310373166.
    1. Sewtz C, Muscheites W, Kriesen U, Grosse-Thie C, Kragl B, Panse J, Aoun S, Cella D, Junghanss C. Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting-German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal. Ann Palliat Med. 2018;7:420–6.
    1. Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999;8:219–227. doi: 10.1136/qshc.8.4.219.
    1. Bausewein C, Fegg M, Radbruch L, Nauck F, von Mackensen S, Borasio GD, Higginson IJ. Validation and clinical application of the German version of the palliative care outcome scale. J Pain Manage. 2005;30:51–62.
    1. Murtagh Fliss EM, Ramsenthaler Christina, Firth Alice, Groeneveld Esther I, Lovell Natasha, Simon Steffen T, Denzel Johannes, Guo Ping, Bernhardt Florian, Schildmann Eva, van Oorschot Birgitt, Hodiamont Farina, Streitwieser Sabine, Higginson Irene J, Bausewein Claudia. A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) Palliative Medicine. 2019;33(8):1045–1057. doi: 10.1177/0269216319854264.
    1. Winkler J, Stolzenberg H. Social class index in the Federal Health Survey. [Article in German]. Gesundheitswesen. 1999;61:S178–83.
    1. Winkler J, Stolzenberg H. Adjustment of the social class index for use in the German health interview and examination survey for children and adolescents (KiGGS) 2003/2006. Wismar: Hochschule Wismar; 2009.
    1. Schenk L., Bau A.-M., Borde T., Butler J., Lampert T., Neuhauser H., Razum O., Weilandt C. Mindestindikatorensatz zur Erfassung des Migrationsstatus. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 2006;49(9):853–860. doi: 10.1007/s00103-006-0018-4.
    1. Dalgard OS, Bjørk S, Tambs K. Social support, negative life events and mental health. Br J Psychiatry. 1995;166(1):29–34. doi: 10.1192/bjp.166.1.29.
    1. Meltzer H. Developing common instruments for health surveys. In: Nosikov A, Gudex C, editors. EUROHIS: Development of a common instrument for mental health. Amsterdam: IOS Press; 2003.
    1. Kilpeläinen K, Aromaa A, the ECHIM project, editors. European Health Indicators: Development and Initial Implementation. Final report of the ECHIM project. Helsinki: National Public Health Institute; 2008.
    1. Spatuzzi R, Giulietti MV, Ricciuti M, Merico F, Meloni C, Fabbietti P, Ottaviani M, Violani C, Cormio C, Vespa A. Quality of life and burden in family caregivers of patients with advanced cancer in active treatment settings and hospice care: a comparative study. Death Stud. 2017;41:276–283. doi: 10.1080/07481187.2016.1273277.
    1. Washington Karla T., Wilkes Chelsey M., Rakes Christopher R., Otten Sheila J., Parker Oliver Debra, Demiris George. Relationships among Symptom Management Burden, Coping Responses, and Caregiver Psychological Distress at End of Life. Journal of Palliative Medicine. 2018;21(9):1234–1241. doi: 10.1089/jpm.2017.0584.
    1. Grande Gunn, Rowland Christine, van den Berg Bernard, Hanratty Barbara. Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey. Palliative Medicine. 2018;32(10):1605–1614. doi: 10.1177/0269216318793286.
    1. Kobayakawa M, Ogawa A, Konno M, Kurata A, Hamano J, Morita T, Kizawa Y, Tsuneto S, Shima Y, Aoyama M, Miyashita M. Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-care setting: a nation-wide survey from the perspective of bereaved family members in Japan. J Psychosom Res. 2017;103:127–132. doi: 10.1016/j.jpsychores.2017.10.012.
    1. Kim HH, Kim SY, Kim JM, Kim SW, Shin IS, Shim HJ, Hwang JE, Chung IJ, Yoon JS. Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients. Palliat Support Care. 2016;14:5–12. doi: 10.1017/S1478951515000073.
    1. Applebaum AJ, Farran CJ, Marziliano AM, Pasternak AR, Breitbart W. Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers. Palliat Support Care. 2014;12:139–148. doi: 10.1017/S1478951513000084.
    1. Dionne-Odom JN, Applebaum AJ, Ornstein KA, Azuero A, Warren PP, Taylor RA, Rocque GB, Kvale EA, Demark-Wahnefried W, Pisu M, Partridge EE, Martin MY, Bakitas MA. Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology. 2018;27:969–976. doi: 10.1002/pon.4603.
    1. Badr H, Smith CB, Goldstein NE, Gomez JE, Redd WH. Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: results of a randomized pilot trial. Cancer. 2015;121:150–158. doi: 10.1002/cncr.29009.
    1. Hudson P, Trauer T, Kelly B, O’Connor M, Thomas K, Summers M, Zordan R, White V. Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial. Psychooncology. 2013;22:1987–1993. doi: 10.1002/pon.3242.
    1. Hudson P, Trauer T, Kelly B, O’Connor M, Thomas K, Zordan R, Summers M. Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial. Psychooncology. 2015;24:19–24. doi: 10.1002/pon.3610.
    1. Lapid MI, Atherton PJ, Kung S, Sloan JA, Shahi V, Clark MM, Rummans TA. Cancer caregiver quality of life: need for targeted intervention. Psychooncology. 2016;25:1400–1407. doi: 10.1002/pon.3960.
    1. McMillan SC, Small BJ, Weitzner M, Schonwetter R, Tittle M, Moody L, Haley WE. Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer. 2006;106:214–222. doi: 10.1002/cncr.21567.
    1. Holm M, Årestedt K, Carlander I, Fürst CJ, Wengström Y, Öhlen J, Alvariza A. Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care - results from a randomized control trial. Psychooncology. 2016;25:795–802. doi: 10.1002/pon.4004.
    1. Dionne-Odom JN, Azuero A, Lyons KD, Hull JG, Tosteson T, Li Z, Li Z, Frost J, Dragnev KH, Akyar I, Hegel MT, Bakitas MA. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33:1446–1452. doi: 10.1200/JCO.2014.58.7824.
    1. Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28:4013–4017. doi: 10.1200/JCO.2010.29.5618.

Source: PubMed

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