Distress among caregivers of phase I trial participants: A cross-sectional study

Supportive Care in Cancer

Volumn 22, Issue 12, 2014, Pages 3331-3340

  Kessler, Elizabeth R ^a,b   Moss, Angela ^f   Eckhardt, S Gail ^a,b   Laudenslager, Mark L ^a,b   Kilbourn, Kristin ^d   Mauss, Iris B ^e   Bowles, Daniel W ^a,b   Hecker, Sharon ^a,b   Fairclough, Diane L ^c   Kutner, Jean S ^a  

^a UNIVERSITY OF COLORADO SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF COLORADO CANCER CENTER   (United States)

^c Global Health and Health Disparities   (United States)

^d UNIVERSITY OF COLORADO   (United States)

^e UNIVERSITY OF CALIFORNIA   (United States)

^f UNIVERSITY OF COLORADO   (United States)

Author keywords

Caregiver; Clinical trial; Distress; Phase I

Indexed keywords

ADULT; ADVANCED CANCER; AGED; ARTICLE; CANCER PATIENT; CAREGIVER; COPING BEHAVIOR; CROSS-SECTIONAL STUDY; DISTRESS SYNDROME; EMOTIONALITY; FEMALE; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; PHASE 1 CLINICAL TRIAL; PRIORITY JOURNAL; QUALITY OF LIFE; SCREENING TEST; ADAPTIVE BEHAVIOR; CANCER STAGING; DEMOGRAPHY; DIAGNOSIS; ETIOLOGY; MENTAL STRESS; MIDDLE AGED; NEEDS ASSESSMENT; NEOPLASMS; PATHOLOGY; PHASE 1 CLINICAL TRIAL (TOPIC); PILOT STUDY; PREVENTION AND CONTROL; PSYCHOLOGICAL RATING SCALE; PSYCHOLOGY; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CLINICAL TRIALS, PHASE I AS TOPIC; CROSS-SECTIONAL STUDIES; DEMOGRAPHY; FEMALE; HUMANS; MIDDLE AGED; NEEDS ASSESSMENT; NEOPLASM STAGING; NEOPLASMS; PILOT PROJECTS; PSYCHIATRIC STATUS RATING SCALES; STRESS, PSYCHOLOGICAL; UNITED STATES;

EID: 84948384718     PISSN: 09414355     EISSN: 14337339     Source Type: Journal    
DOI: 10.1007/s00520-014-2380-3     Document Type: Article

References (62)

1. Given BA, Sherwood P, Given CW (2011) Support for caregivers of cancer patients: transition after active treatment. Cancer Epidemiol Biomarkers Prev 20(10):2015–2021. doi:10.1158/1055-9965.EPI-11-0611
2. Proot IM, Abu-Saad HH, ter Meulen RH, Goldsteen M, Spreeuwenberg C, Widdershoven GA (2004) The needs of terminally ill patients at home: directing one’s life, health and things related to beloved others. Palliat Med 18(1):53–61
3. Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 10(2):58–65, discussion 65
4. Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19(10):1013–1025. doi:10.1002/pon.1670
5. Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F (2008) Family caregivers and guilt in the context of cancer care. Psychosomatics 49(6):511–519. doi:10.1176/appi.psy.49.6.511
6. Vitaliano PP, Zhang J, Young HM, Caswell LW, Scanlan JM, Echeverria D (2009) Depressed mood mediates decline in cognitive processing speed in caregivers. Gerontologist 49(1):12–22. doi:10.1093/geront/gnp004
7. Sorensen S, Pinquart M, Duberstein P (2002) How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 42(3):356–372
8. Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25(30):4829–4834. doi:10.1200/JCO.2006.10.0909
9. Matthews BA (2003) Role and gender differences in cancer-related distress: a comparison of survivor and caregiver self-reports. Oncol Nurs Forum 30(3):493–499. doi:10.1188/03.ONF.493-499
10. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170(12):1795–1801
11. Lau DT, Berman R, Halpern L, Pickard AS, Schrauf R, Witt W (2010) Exploring factors that influence informal caregiving in medication management for home hospice patients. J Palliat Med 13(9): 1085–1090. doi:10.1089/jpm.2010.0082
12. Grov EK, Eklund ML (2008) Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home. J Adv Nurs 63(6):576–585. doi:10.1111/j.1365-2648.2008.04736.x
13. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60(5):317–339. doi:10.3322/caac.20081
14. Meropol NJ, Weinfurt KP, Burnett CB, Balshem A, Benson AB III, Castel L, Corbett S, Diefenbach M, Gaskin D, Li Y, Manne S, Marshall J, Rowland JH, Slater E, Sulmasy DP, Van Echo D, Washington S, Schulman KA (2003) Perceptions of patients and physicians regarding phase I cancer clinical trials: implications for physician-patient communication. J Clin Oncol 21(13):2589–2596. doi:10.1200/JCO.2003.10.072
15. Agrawal M, Grady C, Fairclough DL, Meropol NJ, Maynard K, Emanuel EJ (2006) Patients’ decision-making process regarding participation in phase I oncology research. J Clin Oncol 24(27): 4479–4484. doi:10.1200/JCO.2006.06.0269
16. Horstmann E, McCabe MS, Grochow L, Yamamoto S, Rubinstein L, Budd T, Shoemaker D, Emanuel EJ, Grady C (2005) Risks and benefits of phase 1 oncology trials, 1991 through 2002. N Engl J Med 352(9):895–904. doi:10.1056/NEJMsa042220
17. Nurgat ZA, Craig W, Campbell NC, Bissett JD, Cassidy J, Nicolson MC (2005) Patient motivations surrounding participation in phase I and phase II clinical trials of cancer chemotherapy. Br J Cancer 92(6): 1001–1005. doi:10.1038/sj.bjc.6602423
18. Daugherty C, Ratain MJ, Grochowski E, Stocking C, Kodish E, Mick R, Siegler M (1995) Perceptions of cancer patients and their physicians involved in phase I trials. J Clin Oncol 13(5):1062–1072
19. Finlay E, Lu HL, Henderson H, O’Dwyer PJ, Casarett DJ (2009) Do phase 1 patients have greater needs for palliative care compared with other cancer patients? Cancer 115(2):446–453. doi:10.1002/cncr.24025
20. John OP, Gross JJ (2004) Healthy and unhealthy emotion regulation: personality processes, individual differences, and life span development. J Pers 72(6):1301–1333. doi:10.1111/j.1467-6494.2004.00298.x
21. Gross JJ, John OP (2003) Individual differences in two emotion regulation processes: implications for affect, relationships, and wellbeing. J Pers Soc Psychol 85(2):348–362
22. Cohen S, Kamarck T, Mermelstein R (1983) A global measure of perceived stress. J Health Soc Behav 24(4):385–396
23. Cohen S, Williamson G (1988) Perceived stress in a probability sample of the United States. In: Spacapan S, Oskamp S (eds) The Social Psychology of Health. Sage Publishing, California, pp 31–67
24. Warson D, Clark L, Tellegen A (1988) Development and validation of brief measures of positive and negative affect: The PANAS scales. J Pers Soc Psychol 54:1063–1070
25. Spielberger C, Gorsuch R, Lushene R (1983) Manual for the State- Trait Anxiety Inventory. Consulting Psychologists Press, Inc, California
26. Radloff L (1977) The CES-D Scale: a self report depression scale for research in the general population. Appl Psych Meas 1:385–401
27. Given CW, Given B, Stommel M, Collins C, King S, Franklin S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. J Res Nurs Health 15(4):271–283
28. Grov EK, Fossa SD, Tonnessen A, Dahl AA (2006) The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology 15(6):517–527. doi:10.1002/pon.987
29. Antoni MH, Lehman JM, Kilbourn KM, Boyers AE, Culver JL, Alferi SM, Yount SE, McGregor BA, Arena PL, Harris SD, Price AA, Carver CS (2001) Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer. Health Psychol 20(1):20–32
30. Gratz K, Roemer L (2004) Multidimensional assessment of emotion regulation and dysregulation: development, factor structure, and initial validation of the difficulties in emotion regulation scale. J Psychopathol Behav Assess 26(1):41–54
31. Tarlow B, Wisniewski S, Belle S, Rubert M, Ory M, Gallagher- Thompson D (2004) Positive aspects of caregiving, contributions of the REACH project to the development of a new measure for Alzheimer’s caregiving. Res Aging 26:429–453
32. Mitchell PH, Powell L, Blumenthal J, Norten J, Ironson G, Pitula CR, Froelicher ES, Czajkowski S, Youngblood M, Huber M, Berkman LF (2003) A short social support measure for patients recovering from myocardial infarction: the ENRICHD social support inventory. J Cardpulm Rehabil 23(6):398–403
33. Carver CS (1997) You want to measure coping but your protocol’s too long: consider the brief COPE. Int J Behav Med 4(1):92–100. doi:10.1207/s15327558ijbm0401_6
34. Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. conceptual framework and item selection. Med Care 30(6):473–483
35. Beusterien KM, Steinwald B, Ware JE Jr. (1996) Usefulness of the SF-36 health survey in measuring health outcomes in the depressed elderly. J Geriatr Psychiatry Neurol 9(1):13–21
36. Ware JE Jr. (2000) SF-36 health survey update. Spine 25(24):3130–3139
37. Kim Y, Duberstein PR, Sorensen S, Larson MR (2005) Levels of depressive symptoms in spouses of people with lung cancer: effects of personality, social support, and caregiving burden. Psychosomatics 46(2):123–130. doi:10.1176/appi.psy.46.2.123
38. Kim Y, Shaffer KM, Carver CS, Cannady RS (2014) Prevalence and predictors of depressive symptoms among cancer caregivers 5 years after the relative’s cancer diagnosis. J Consult Clin Psychol 82(1):1–8. doi:10.1037/a0035116
39. Stenberg U, Cvancarova M, Ekstedt M, Olsson M, Ruland C (2014) Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment. Soc Work Health Care 53(3):289–309. doi:10.1080/00981389.2013.873518
40. Leroy T, Christophe V, Penel N, Clisant S, Antoine P (2011) Participation in randomised clinical trials is linked to emotion regulation strategies. Contemp Clin Trials 32(1):32–35. doi:10.1016/j.cct.2010.09.003
41. Pinquart M, Sorensen S (2004) Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a metaanalytic comparison. AgingMent Health 8(5):438–449. doi:10.1080/13607860410001725036
42. Mitchell AJ, Ferguson DW, Gill J, Paul J, Symonds P (2013) Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol 14(8):721–732. doi:10.1016/S1470-2045(13)70244-4
43. Boerner K, Schulz R, Horowitz A (2004) Positive aspects of caregiving and adaptation to bereavement. Psychol Aging 19(4):668–675. doi:10.1037/0882-7974.19.4.668
44. Wagner CD, Tanmoy Das L, Bigatti SM, Storniolo AM (2011) Characterizing burden, caregiving benefits, and psychological distress of husbands of breast cancer patients during treatment and beyond. Cancer Nurs 34(4):E21–30. doi:10.1097/NCC.0b013e31820251f5
45. Kim Y, Carver CS (2012) Recognizing the value and needs of the caregiver in oncology. Curr Opin Support Palliat Care 6(2):280–288. doi:10.1097/SPC.0b013e3283526999
46. Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA (1998) Cancer and caregiving: the impact on the caregiver’s health. Psychooncology 7(1):3–13. doi:10.1002/(SICI)1099-1611(199801/02)7:1<3::AID-PON320>3.0.CO;2-5
47. Kim Y, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psychooncology 15(9):795–804. doi:10.1002/pon.1013
48. 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. Psychooncology 22(2):403–410. doi:10.1002/pon.2104
49. Covinsky KE, Goldman L, Cook EF, Oye R, Desbiens N, Reding D, Fulkerson W, Connors AF Jr, Lynn J, Phillips RS (1994) The impact of serious illness on patients’ families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Jama 272(23):1839–1844
50. Simoneau TL, Mikulich-Gilbertson SK, Natvig C, Kilbourn K, Spradley J, Grzywa-Cobb R, Philips S, McSweeney P, Laudenslager ML (2013) Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psychooncology. doi:10.1002/pon.3259
51. Salmon P, Manzi F, Valori RM (1996) Measuring the meaning of life for patients with incurable cancer: the life evaluation questionnaire (LEQ). Eur J Cancer 32 (5):755–760
52. Hickey AM, Bury G, O’Boyle CA, Bradley F, O’Kelly FD, Shannon W (1996) A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 313(7048):29–33
53. 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):197–202. doi:10.1200/JOP.2012.000690
54. Lee KC, Chang WC, Chou WC, Su PJ, Hsieh CH, Chen JS, Tang ST (2013) Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients. J Palliat Med 16(6):632–637. doi:10.1089/jpm.2012.0499
55. Stoehlmacher-Williams J, Villanueva C, Foa P, Rottey S, Winquist E, Licitra L, Davidenko I, Skladowski K, Tahara M, Faivre S, Oliner K, Pan Z, Bach B, Vermorken J (2012) Safety and efficacy of panitumumab (pmab) in HPV-positive (+) and HPV-negative (−) recurrent/metastatic squamous cell carcinoma of the head and neck (R/M SCCHN): analysis of the global phase III SPECTRUM trial. J Clin Oncol 30:abst 5504
56. Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112(11 Suppl):2556–2568. doi:10.1002/cncr.23449
57. 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(3):315–325. doi:10.1017/S1478951511000265
58. Kim Y, Carver CS, Rocha-Lima C, Shaffer KM (2013) Depressive symptoms among caregivers of colorectal cancer patients during the first year since diagnosis: a longitudinal investigation. Psychooncology 22(2):362–367. doi:10.1002/pon.2100
59. Guada J, Land H, Han J (2011) An exploratory factor analysis of the burden assessment scale with a sample of African-American families. CommunityMent Health J 47(2):233–242. doi:10.1007/s10597-010-9298-0
60. Hartmann M, Bazner E, Wild B, Eisler I, Herzog W (2010) Effects of interventions involving the family in the treatment of adult patients with chronic physical diseases: a meta-analysis. Psychother Psychosom 79(3):136–148. doi:10.1159/000286958
61. Martire LM, Lustig AP, Schulz R, Miller GE, Helgeson VS (2004) Is it beneficial to involve a family member? A metaanalysis of psychosocial interventions for chronic illness. Health Psychol 23(6):599–611. doi:10.1037/0278-6133.23.6599
62. Bevans M, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Jama 307(4):398–403. doi:10.1001/jama.2012.29