380
Views
7
CrossRef citations to date
0
Altmetric
Original Articles

The unique burden of rare cancer caregiving: caregivers of patients with Erdheim–Chester disease

, , , , , , , , , & show all
Pages 1406-1417 | Received 06 Sep 2019, Accepted 14 Jan 2020, Published online: 24 Feb 2020

References

  • Applebaum A. Isolated, invisible, and in-need: there should be no ‘I’ in caregiver. Pall Supp Care. 2015;13(3):415–416.
  • Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016;122(13):1987–1995.
  • Braun M, Mikulincer M, Rydall A, et al. Hidden morbidity in cancer: spouse caregivers. JCO. 2007;25(30):4829–4834.
  • Askari A. Current psycho-pathological issues among partners of cancer patients. J Psychosom Res. 2012;7(1):77.
  • Hudson PL, Thomas K, Trauer T, et al. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manag. 2011;41(3):522–534.
  • Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6):1105–1117.
  • Girgis A, Lambert S, Johnson C, et al. Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review. JOP. 2013;9(4):197–202.
  • Adelman RD, Tmanova LL, Delgado D, et al. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–1060.
  • Litzelman K, Yabroff KR. How are spousal depressed mood, distress, and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample. Cancer Epidemiol Biomarkers Prev. 2015;24(6):969–977.
  • Zahid MA, Ohaeri JU. Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia. BMC Psychiatry. 2010;10:71.
  • Adams LS, Miller JL, Grady PA. The spectrum of caregiving in palliative care for serious, advanced, rare diseases: key issues and research directions. J Palliat Med. 2016;19(7):698–705.
  • Loggers ET, Prigerson HG. The end-of-life experience of patients with rare cancers and their caregivers. Rare Tumors. 2014;6(1):24–27.
  • DeSantis CE, Kramer JL, Jemal A. The burden of rare cancers in the United States. CA Cancer J Clin. 2017;67(4):261–272.
  • Gatta G, van der Zwan JM, Casali PG, et al. Rare cancers are not so rare: the rare cancer burden in Europe. Eur J Cancer. 2011;47(17):2493–2511.
  • Pelentsov LJ, Laws TA, Esterman AJ. The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil Health J. 2015;8(4):475–491.
  • Applebaum AJ, Kryza-Lacombe M, Buthorn J, et al. Existential distress among caregivers of patients with brain tumors: a review of the literature. Neuro-Oncol Practice. 2016;3(4):232–244.
  • Stewart M, Shaffer S, Murphy B, et al. Characterizing the high disease burden of transthyretin amyloidosis for patients and caregivers. Neurol Ther. 2018;7(2):349–364.
  • Foster J. Insider research with family members who have a member living with rare cancer. Int J Qual Methods. 2009;8(4):16–26.
  • Diamond EL, Dagna L, Hyman DM, et al. Consensus guidelines for the diagnosis and clinical management of Erdheim-Chester disease. Blood. 2014;124(4):483–492.
  • Diamond EL, Reiner AS, Buthorn JJ, et al. A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease. Blood Adv. 2019;3(7):934–938.
  • Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients’ families. SUPPORT investigators. Study to understand prognoses and preferences for outcomes and risks of treatment. JAMA. 1994;272(23):1839–1844.
  • Novak M, Guest C. Application of a multidimensional caregiver burden inventory. The Gerontologist. 1989;29(6):798–803.
  • Given CW, Given B, Stommel M, et al. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–283.
  • Grov EK, Fossa SD, Tonnessen A, et al. The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho-oncology. 2006;15(6):517–527.
  • Hodgkinson K, Butow P, Hobbs KM, et al. Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors’ Partners Unmet Needs measure (CaSPUN). Psycho-oncology. 2007;16(9):805–813.
  • Cohen SR, Sawatzky R, Russell LB, et al. Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-revised. Palliat Med. 2017;31(2):120–129.
  • Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–370.
  • Carroll BT, Kathol RG, Noyes R, Jr, et al. Screening for depression and anxiety in cancer patients using the Hospital Anxiety and Depression Scale. Gen Hosp Psychiatry. 1993;15(2):69–74.
  • Gough K, Hudson P. Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients. J Pain Symptom Manag. 2009;37(5):797–806.
  • Erlingsson C, Brysiewicz P. A hands-on guide to doing content analysis. Afr J Emerg Med. 2017;7(3):93–99.
  • Dworkin SL. Sample size policy for qualitative studies using in-depth interviews. Arch Sex Behav. 2012;41(6):1319–1320.
  • Lynch K, Frost M, Chokshi S, et al. The effects of buprenorphine depot implants on patient sleep and quality of life: findings from a mixed-methods pilot trial. Addict Res Theory. 2019:1–8.
  • Hunt GGL, Kent EE, L W-R. Cancer Caregiving in the U.S.: An Intense, Episodic, and Challenging Care Experience. National Alliance for Caregiving. Cancer Support Community, and National Cancer Institute. 2016.
  • Balfe M, Butow P, O'Sullivan E, et al. The financial impact of head and neck cancer caregiving: a qualitative study. Psycho‐oncology. 2016;25(12):1441–1447.
  • Dobrof J, Ebenstein H. Family caregiver self-identification: implications for healthcare and social service professionals. Generations. 2003;27(4):33–38.
  • Eifert EK, Adams R, Dudley W, et al. Family caregiver identity: a literature review. Am J Health Educ. 2015;46(6):357–367.
  • AAoR P. AARP Caregiver Identification Study. In: Kutner G, ed. 2001. Available from: https://assets.aarp.org/rgcenter/post-import/caregiver.pdf
  • Molassiotis A, Wilson B, Blair S, et al. Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psychooncology. 2011;20(1):88–97.
  • Johansen S, Cvancarova M, Ruland C. The effect of cancer patients’ and their family caregivers’ physical and emotional symptoms on caregiver burden. Cancer Nurs. 2018;41(2):91–99.
  • Applebaum AJ, Panjwani AA, Buda K, et al. Emotion regulation therapy for cancer caregivers-an open trial of a mechanism-targeted approach to addressing caregiver distress. Transl Behav Med. 2018.
  • McCorkle R, Yost LS, Jepson C, et al. A cancer experience: relationship of patient psychosocial responses to care‐giver burden over time. Psycho‐Oncology. 1993;2(1):21–32.
  • Applebaum AJ, Buda KL, Schofield E, et al. Exploring the cancer caregiver’s journey through web-based meaning-centered psychotherapy. Psychooncology. 2018;27(3):847–856.
  • Lambert S, Girgis A, Descallar J, et al. Trajectories of mental and physical functioning among spouse caregivers of cancer survivors over the first five years following the diagnosis. Patient Educ Counsel. 2017;100(6):1213–1221.
  • Applebaum AJ, Farran CJ, Marziliano AM, et al. Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers. Pall Supp Care. 2014;12(2):139–148.
  • Applebaum AJ, Kulikowski JR, Breitbart W. Meaning-centered psychotherapy for cancer caregivers (MCP-C): rationale and overview. Pall Supp Care. 2015;13(6):1631–1641.
  • Horick NK, Muzikansky A, Gutierrez HL, et al. Physical symptoms in long-term survivors of rare cancer. J Cancer Surviv. 2018;12(6):835–842.
  • Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. JCO. 2010;28(7):1203–1208.
  • Estrada-Veras JI, O’Brien KJ, Boyd LC, et al. The clinical spectrum of Erdheim-Chester disease: an observational cohort study. Blood Adv. 2017;1(6):357–366.
  • Cohen-Aubart F, Emile JF, Carrat F, et al. Phenotypes and survival in Erdheim-Chester disease: results from a 165-patient cohort. Am J Hematol. 2018;93(5):E114–E117.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.