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01-10-2016 | Original Article

Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors

Authors: Devesh V. Oberoi, Vicki White, Michael Jefford, Graham G. Giles, Damien Bolton, Ian Davis, Ingrid Winship, H. Miles Prince, Jeremy Millar, Simon Harrison, Anne Kay, David Hill

Published in: Supportive Care in Cancer | Issue 10/2016

Abstract

Purpose

This study aims to examine the unmet needs and psychological distress (anxiety and depression) in family caregivers of renal cell carcinoma survivors.

Methods

A cross-sectional study design was used. Unmet needs were assessed with the Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C) questionnaire, and psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) in a telephone survey of 196 caregivers of renal cell carcinoma (RCC) survivors. Chi-square tests examined bivariate relationships, and multivariate logistic regression examined the associations between anxiety and depression and of unmet needs with caregivers’ experience of patients’ care, time spent caregiving, caregivers’ demographic characteristics and patients’ disease stage.

Results

Sixty-four percent of caregivers had at least one low, moderate or high unmet need, with 53 % reporting at least three needs and 29 % reporting 10 or more unmet needs (median 2, range 0–38). Elevated anxiety (HADS-A > 8) and depression (HADS-D > 8) were found in 29 and 11 % of the sample, respectively. Psychological and emotional needs were associated with advanced cancer stage (stages 3 and 4) (OR 3.07, 95 % CI 1.35–6.76) and with experience of care during surgery (OR 0.87, 95 % CI 0.78–0.99). Healthcare service needs were associated with time spent caregiving, with caregivers spending >1 h/day in the past week having three times higher odds (OR 3.44, 95 % CI 1.52–7.72) than those not spending any time. Odds of experiencing information needs were lower in caregivers who were in a relationship (OR 0.20, 95 % CI 0.04–0.83). Elevated anxiety (OR 1.59, 95 % CI 1.09–2.33) and depression (OR 2.02, 95 % CI 1.08–3.79) were associated with unmet information needs. Depression was also associated with experiences of care during treatment (OR 0.69, 95 % CI 0.49–0.96).

Conclusion

RCC caregivers’ unmet information needs are associated with elevated anxiety and depression. Improved experiences of cancer care are associated with lower odds of unmet needs and elevated depression in RCC caregivers.

Segrin C, Badger T, Dorros S, Meek P, Lopez A (2007) Interdependent anxiety and psychological distress in women with breast cancer and their partners. Psychooncology 16(7):634–643CrossRefPubMed

Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25(30):4829–4834CrossRefPubMed

Bevans M, Sternberg E (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4):398–403CrossRefPubMedPubMedCentral

Schulz RBS (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215–2219CrossRefPubMed

Lambert SD, Girgis A, Lecathelinais C, Stacey F (2013) Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer 21(1):75–85CrossRefPubMed

Girgis A, Lambert S, Lecathelinais C (2011) The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psychooncology 20(4):387–393CrossRefPubMed

Girgis A, Lambert S, Johnson C, Waller A, Currow D (2013) Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review. J Oncol Pract 9(4):197–202CrossRefPubMed

Girgis A, Lambert S, McElduff P, Bonevski B, Lecathelinais C, Boyes A et al (2013) Some things change, some things stay the same: a longitudinal analysis of cancer caregivers’ unmet supportive care needs. Psychooncology 22(7):1557–1564CrossRefPubMed

Soothill K, Morris SM, Thomas C, Harman JC, Francis B, McIllmurray MB (2003) The universal, situational, and personal needs of cancer patients and their main carer. Eur J Oncol Nurs 7(1):5–13CrossRefPubMed

10.

Hodgkinson K, Butow P, Hobbs KM, Hunt GE, Lo SK, Wain G (2007) Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors’ Partners Unmet Needs measure (CaSPUN). Psychooncology 16(9):805–813CrossRefPubMed

11.

Kim Y, Kashy DA, Spillers RL, Evans TV (2010) Needs assessment of family caregivers of cancer survivors: three cohorts comparison. Psychooncology 19(6):573–582CrossRefPubMed

12.

Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors. Cancer 112(S11):2556–2568CrossRefPubMed

13.

Morasso G, Capelli M, Viterbori P, Di Leo S, Alberisio A, Costantini M et al (1999) Psychological and symptom distress in terminal cancer patients with met and unmet needs. J Pain Symptom Manag 17(6):402–409CrossRef

14.

Sharpe L, Butow P, Smith C, McConnell D, Clarke S (2005) The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psychooncology 14(2):102–114CrossRefPubMed

15.

Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manag 17(6):418–428CrossRef

16.

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

17.

Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C et al (2012) The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2(3):224–230

18.

Coristine M, Crooks D, Grunfield E, Stonebridge C, Christie A (2003) Caregiving for women with advanced breast cancer. Psychooncology 12(7):709–719CrossRefPubMed

19.

Hodgkinson K, Butow P, Hunt GE, Wyse R, Hobbs KM, Wain G (2007) Life after cancer: couples’ and partners’ psychological adjustment and supportive care needs. Support Care Cancer 15(4):405–415CrossRefPubMed

20.

Mason TM (2005) Information needs of wives of men following prostatectomy. Oncol Nurs Forum 32(3):557–563

21.

Department of Health (2008) Psycho-oncology model of care. Department of Health, Western Australia, Perth

22.

Australian Institute of Health and Welfare (2012) Cancer survival and prevalence in Australia: period estimates from 1982 to 2010. Australian Institute of Health and Welfare, Canberra

23.

Australian Institute of Health and Welfare (2014) Cancer in Australia: an overview in 2014. Australian Institute of Health and Welfare, Canberra

24.

Ljungberg B, Hanbury DC, Kuczyk MA, Merseburger AS, Mulders PF, Patard J-J et al (2007) Renal cell carcinoma guideline. Eur Urol 51(6):1502–1510CrossRefPubMed

25.

Ljungberg B, Cowan NC, Hanbury DC, Hora M, Kuczyk MA, Merseburger AS et al (2010) EAU guidelines on renal cell carcinoma: the 2010 update. Eur Urol 58(3):398–406CrossRefPubMed

26.

Albqami N, Janetschek G (2006) Indications and contraindications for the use of laparoscopic surgery for renal cell carcinoma. Nat Rev Urol 3(1):32–37

27.

Permpongkosol S, Chan DY, Link RE, Sroka M, Allaf M, Varkarakis I et al (2005) Long-term survival analysis after laparoscopic radical nephrectomy. J Urol 174(4):1222–1225CrossRefPubMed

28.

Bibby H, White V, Jefford M, Bolton D, Davis IB, Millar J et al (2015) Prevalence and predictors of anxiety among Australian adults with kidney cancer. 12th Behavioural Research in Cancer Control Conference; 12–15 May; Sydney, Australia

29.

Yabroff KR, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115(S18):4362–4373CrossRefPubMed

30.

Australian Bureau of Statistics (2015) Australian demographic statistics, Mar 2015. Australian Bureau of Statistics, Canberra

31.

Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370CrossRefPubMed

32.

Sánchez‐López MP, Limiñana‐Gras RM, Colodro‐Conde L, Cuéllar‐Flores I (2015) Use of the Hospital Anxiety and Depression Scale in Spanish caregivers. Scand J Caring Sci

33.

Gough K, Hudson P (2009) Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients. J Pain Symptom Manag 37(5):797–806CrossRef

34.

Clinton-McHarg T, Carey M, Sanson-Fisher R, Tzelepis F, Bryant J, Williamson A (2014) Anxiety and depression among haematological cancer patients attending treatment centres: prevalence and predictors. J Affect Disord 165:176–181CrossRefPubMed

35.

Carey M, Ieropoli S, White V (2009) The PROSPECT program (Patient responses: an ongoing survey of people experiencing cancer treatment). Pilot Study. Melbourne, Australia: Centre for Behavioural Research in Cancer, The Cancer Council Victoria, Prepared for: CanNET Victoria

36.

Bursac Z, Gauss CH, Williams DK, Hosmer DW (2008) Purposeful selection of variables in logistic regression. Source Code Biol Med 3(1):1–8CrossRef

37.

Hosmer DW, Lemeshow S (2000) Applied logistic regression. Wiley, New YorkCrossRef

38.

Green SB (1991) How many subjects does it take to do a regression analysis. Multivar Behav Res 26(3):499–510CrossRef

39.

Price MA, Butow PN, Costa DS, King MT, Aldridge LJ, Fardell JE et al (2010) Prevalence and predictors of anxiety and depression in women with invasive ovarian cancer and their caregivers. Med J Aust 193(5):S52PubMed

40.

Crawford J, Henry J, Crombie C, Taylor E (2001) Normative data for the HADS from a large non‐clinical sample. Br J Clin Psychol 40(4):429–434CrossRefPubMed

41.

Hwang SS, Chang VT, Alejandro Y, Osenenko P, Davis C, Cogswell J et al (2003) Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center. Palliat Support Care 1(04):319–329CrossRefPubMed

42.

Janda M, Steginga S, Dunn J, Langbecker D, Walker D, Eakin E (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Educ Couns 71(2):251–258CrossRefPubMed

43.

Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psychooncology 20(1):88–97CrossRefPubMed

44.

Lund L, Ross L, Petersen MA, Groenvold M (2014) Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey. Ann Oncol 14(1):1

45.

Ugalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study. Support Care Cancer 20(6):1175–1181CrossRefPubMed

Title: Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors
Authors: Devesh V. Oberoi
Vicki White
Michael Jefford
Graham G. Giles
Damien Bolton
Ian Davis
Ingrid Winship
H. Miles Prince
Jeremy Millar
Simon Harrison
Anne Kay
David Hill
Publication date: 01-10-2016
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 10/2016
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-016-3245-8

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