Table 6.

Challenges that patients/caregivers face as a result of having/caring for a patient with chordoma

	Patients (n = 358)		Caregivers (n = 202)
	No.	Percent	No.	Percent
Emotional health and coping
Feelings of loneliness or isolation	104	29	87	43
Difficulty coping/helping the patient cope with his/her illness	93	26	91	45
Griefa	–	–	111	55
Family conflict	34	10	46	23
Difficulty helping children or other family members cope	47	13	67	33
Difficulty talking about chordoma and how it has affected my life	64	18	43	21
Employment and finances
Change in career or reduced ability to work	118	33	63	31
Short-term disabilityb	84	24	–	–
Long-term disabilityb	119	33	–	–
Loss of employment	74	21	20	10
Financial distress (including bankruptcy or foreclosure)	59	17	39	19
Access to care and information
Denial of insurance coverage for the patient’s recommended treatment	45	13	34	17
Loss of health insuranceb	20	6	–	–
Inability to pay for the patient’s recommended treatment	28	8	20	10
Inability to pay for travel, lodging, or other treatment-related expenses	45	13	28	14
Confusion or unanswered questions about chordoma	101	28	90	45
Difficulty finding experienced physicians or treatment centers	96	27	86	43
Quality of care
Delayed diagnosis of patient	134	37	95	47
Misdiagnosis of patient	85	24	56	28
Difficulty dealing with physicians or medical staff	77	22	50	25
Patient received wrong or inappropriate care	64	18	49	24

The challenges were asked in the following questions in the survey: “Which of the following challenges have you faced as a result of your experience with chordoma?” and “Which of the following challenges have you faced in caring for someone with chordoma?”

^a Response option only available to respondents who identify themselves as caregivers of chordoma patients

^b Response option only available to respondents who identify themselves as patients