Describing Complexity in Palliative Home Care Through HexCom: A Cross-Sectional, Multicenter Study

Figures & data

Figure 1 HexCom form (previous page): analysis of needs.

Notes: Collects information about the Complexity observed in each domain and subdomain of Necessity, at the beginning (I) and at the end (F) of the Follow-up, with 3 complexity levels: High (H) (Refractory situation), Medium (M) (Difficult situation), Low (L) (Without Complexity), or N if it cannot be assessed. R&S: Resources & Strengths; STE: Suitability of treatment efforts; DHD: Desire to hasten death; SLD: Situation during last days of life. Interv: interveners. Soc: Social worker; Psyc: Psychologist; Vol: Volunteer; PCU: Palliative care unit; CHC: Hospital.

Figure 2 HexCom form (later page): analysis of resources and strengths.

Notes: Collects information about Resources and Strengths observed in the home and that help sustain the actual situation. It is indicated if resource determination is detected.

Abbreviation: R&S, resources and strengths.

Table 1 Main Variables: Total and per Disease Group

	Cancer	Organ Failure	Neurological Disorders	Dementia	Frailty/ Multimorbidity	Total
N(%)	511(61.4%)	168(20.1%)	47(5.6%)	78(9.3%)	26(3.1%)	832(100%)	P
Average age^a	74.5 (12.3)	85.1(8.8)	77.7(17.9)	89.5(7.8)	90.12(8.6)	78.7(13.0)	<0.001^e
Range	22–100	53–105	24–101	66–107	70–101	22–107
Female	213(41.8%)	80(47.6%)	30(63.8%)	56(71.8%)	15(57.7%)	394 (47.6%)	<0.001^f
Caretaker:							<0.001^f
Partner	253(49.9%)	49(29.3%)	11(23.4%)	17(21.8%)	3(11.5%)	333 (40.4%)
Children	181(35.7%)	77(46.1%)	23(48.9%)	46(59.0%)	19(73.1%)	346(41.9%)
Other Fam	35(6.9%)	17(10.2%)	7(14.9%)	7(9.0%)	1(3.8%)	67(8.1%)
Other	38(7.5%)	24(14.4%)	6(12.8%)	8(10.3%)	3(11.5%)	79(9.6%)
External caretaker							<0.001^f
No	385(75.6%)	94(56.0%)	21(44.7%)	40(51.3%)	14(53.8%)	554(66.9%)
Part time	82(16.1%)	42(25.0%)	18(38.3%)	20(25.6%)	9(34.6%)	171(20.7%)
24 hrs	42(8.3%)	32(19.0%)	8(17.0%)	18(23.1%)	3(11.5%)	103(12.4%)
Functional status (Barthel Index)^a	61.9(27.3)	48.3(28.9)	13.1(15.5)	6.2(12.8)	19.8(27.7)	49.8(32.4)	<0.001^e
Cognitive impairment							<0.001^f
No	419(82.2%)	113(67.3%)	18(38.3%)	0(0.0%)	14(53.8%)	566(68.3%)
Mild	46(9.0%)	21(12.5%)	9(19.1%)	1(1.3%)	6(23.1%)	83(10.0%)
Moderate	26(5.1%)	18(10.7%)	2(4.3%)	7(9.2%)	3(11.5%)	56(6.8%)
Severe	19(3.7%)	16(9.5%)	18(38.3%)	68(89.5%)	3(11.5%)	124(15.0%)
Medical diagnosis^b	C34: 123(24.1%) C18: 68(13.3%)	I50: 58(34.5%) J44: 51(30.4%)	G31: 26(55.3%) G12: 8(17.0%)	G30: 46(59.0%) G31: 25(32.1%)	R54: 12(46.2%) I70: 4(15.4%)
Dementia^c	33 (6.5%)	25(14.9%)	20(42.6%)	75(100%)	5(19.2%)	158 (19.1%)	<0.001^f
Total days^d	31(14–65)	37.5(16.25–104.00)	35(13–116.25)	37.5(9–68.5)	13.5(4.75–60.75)	33(14–74)	0.064^g
PADES visits^d	5(3–9)	5(3–10)	5(2–9.25)	4(2–7)	3(2–7.25)	5(2–9)	0.240^g
Social worker visit	337(66.7%)	120(71.9%)	37(80.4%)	49(63.6%)	13(50.0%)	556(67.7%)	0.055 ^f
Psychologist visit	135(26.7%)	17(10.3%)	11(23.9%)	8(10.7%)	2(7.7%)	173(21.2%)	<0.001^f
Complexity Score^d	51(24–201)	33(23–132)	32(22–213)	23(11.5–111)	32.5(21–122)	42(23–141)	<0.001^g

Notes: N(%): number of patients in each disease group and their percentage with respect to the total. PADES: Home care support team program. ^aMean and Standard Deviation; ^bICD-10 Code: C34: Neoplasm of lungs; C18: Neoplasm of colon; I50: Heart failure; J44: Chronic obstructive pulmonary disease; G31: Degenerative diseases of the nervous system; G12: Motor neuron disease; G30: Alzheimer’s disease; R54: Senility; I70: Atherosclerosis. ^cConcomitant dementia. ^dMedian. 25th and 75th percentiles; ^et Student test; ^fChi-square test; ^gKruskal–Wallis test.

Figure 3 Comparison of complexity scores of each disease group.

Note: The dashed line represents the median Complexity Score of all participants.

Table 2 Level of Complexity per Domain, Subdomain, and Global

Domain/Subdomain	Complexity
	Low	Moderate	High
Clinical	297(36.3%)	387(47.3%)	135(16.5%)
Physical	336(41.1%)	365(44.6%)	127 (14.3%)
Therapeutic	502(61.5%)	243(29.8%)	71(8.7%)
Psychological	415(52.3%)	279(35.2%)	99(12.5%)
Personality	594(76.4%)	130(16.7%)	53(6.8%)
Emotional	419(55.7%)	251(33.4%)	82(10.9%)
Spiritual	441(68.7%)	150(23.4%)	51(7.9%)
Meaning	420(74.5%)	105(18.6%)	39(6.9%)
Connection	530(84.1%)	73(11.6%)	27(4.3%)
Transcendence	384(73.1%)	110(21.0%)	31(5.9%)
Social/Family	257(31.4%)	364(44.4%)	198(24.2%)
Relationships	534(65.5%)	210(25.8%)	71(8.7%)
Emotional	425(52.5%)	289(35.7%)	96(11.9%)
Practical	454(55.7%)	267(32.8%)	94(11.5%)
External	420(54.6%)	254(33.0%)	95(12.4%)
Financial	668(85.3%)	82(10.5%)	33(4.2%)
Ethical	554(70.4%)	169(21.5%)	64(8.1%)
Information	601(81.5%)	91(12.3%)	45(6.1%)
STE	556(80.3%)	112(16.2%)	24(3.5%)
DHD	540(87.7%)	59(9.6%)	17(2.8%)
Death-related	313(42.2%)	272(36.7%)	156(21.1%)
Place	290(48.5%)	175(29.3%)	133(22.2%)
SLD	171(62.6%)	61(22.3%)	41(15.0%)
Grief	459(62.8%)	201(28.6%)	44(6.3%)
Global complexity	87(10.6%)	385(47.0%)	347(42.4%)

Abbreviations: STE, suitability of treatment efforts; DHD, desire to hasten death; SLD, situation during last days of life.

Table 3 Differences in Complexity Across Disease Groups: Patients with Moderate or High Complexity (N%)

Domain/Subdomain	Cancer	Organ Failure	Neurological Disorder	Dementia	Frailty/Multimorbidity	Total	P
Clinical	318 (63.0%)	121 (73.3%)^a	30 (63.8%)	36 (47.4%)^b	17 (65.4%)	522 (63.7%)	0.004
Physical	292 (57.9%)	114 (69.1%)^a	28 (59.6%)	31 (40.8%)^b	17 (65.4%)	482 (58.9%)	0.001
Therapeutic	192 (38.2%)	73 (44.2%)	17 (37.0%)	22 (28.9%)	10 (38.5%)	314 (38.5%)	0.258
Psychological	252 (50.5%)	71 (44.9%)	24 (54.5%)	22 (32.8%)^b	9 (36.0%)	378 (47.7%)	0.037
Personality	119 (24.3%)	38 (24.5%)	8 (18.6%)	14 (21.9%)	4 (16.0%)	183 (23.6%)	0.790
Emotional	224 (46.0%)	64 (43.0%)	21 (55.3%)	15 (27.3%)	9 (39.1%)	333 (44.3%)	0.055
Spiritual	149 (33.6%)	38 (29.7%)	9 (33.3%)	1 (3.7%)^b	4 (23.5%)	201 (31.3%)	0.023
Meaning	103 (26.4%)	29 (24.2%)	8 (38.1%)	1 (6.3%)	3 (17.6%)	144 (25.5%)	0.222
Connection	71 (16.2%)	24 (19.0%)	3 (11.5%)	0 (0.0%)	2 (11.8%)	100 (15.9%)	0.191
Transcendence	110 (30.5%)	20 (17.2%)^b	7 (36.8%)	0 (0.0%)^b	4 (23.5%)	141 (26.9%)	0.010
Social/Family	348 (68.9%)	121 (73.3%)	34 (72.3%)	47 (61.8%)	12 (46.2%)^b	562 (68.6%)	0.045
Relationships	172 (34.1%)	64 (39.3%)	18 (38.3%)	20 (26.7%)	7 (26.9%)	281 (34.5%)	0.323
Emotional	236 (47.0%)	80 (49.4%)	27 (58.7%)	32 (43.2%)	10 (38.5%)	385 (47.5%)	0.409
Practical	222 (44.0%)	80 (48.8%)	23 (48.9%)	28 (37.3%)	8 (32.0%)	361 (44.3%)	0.312
External	210 (44.0%)	83 (52.9%)	19 (47.5%)	28 (39.4%)	9 (37.5%)	349 (45.4%)	0.232
Financial	74 (15.2%)	25 (16.0%)	3 (7.5%)	8 (10.7%)	5 (20.0%)	115 (14.7%)	0.477
Ethical	156 (31.6%)	42 (26.3%)	14 (31.8%)	13 (20.0%)	8 (33.3%)	233 (29.6%)	0.295
Information	109 (23.0%)	16 (10.5%)^b	4 (10.5%)	4 (7.7%)^b	3 (13.6%)	136 (18.5%)	0.001
Suitability of treatment efforts	78 (18.7%)	27 (18.6%)	12 (29.3%)	12 (18.5%)	7 (29.2%)	136 (19.7%)	0.384
Desire to hasten death	50 (12.9%)	16 (12.2%)	3 (9.1%)	3 (7.0%)	4 (20.0%)	76 (12.3%)	0.618
Death	283 (61.9%)	82 (58.2%)	21 (46.7%)	28 (38.9%)^b	14 (53.8%)	428 (57.8%)	0.003
Location	215 (58.9%)^a	59 (54.1%)	10 (30.3%)^b	15 (22.7%)^b	9 (36.0%)	308 (51.5%)	0.000
Situation of last days	67 (42.7%)	18 (36.0%)	5 (29.4%)	6 (18.8%)	6 (35.3%)	102 (37.4%)	0.128
Grief	169 (38.9%)	39 (29.5%)	17 (38.6%)	14 (20.6%)^b	6 (24.0%)	245 (34.8%)	0.015

Notes: N(%): number of patients in each disease group and their percentage with respect to the total. The significant differences according to the standardized residuals for Pearson’s Chi-square test are marked in bold: ^aGreater than 1.96 (observed frequency is greater than expected); ^bLess than −1.96 (observed frequency is less than expected).

Table 4 Resources and Strengths Used to Face the End-of-Life Across Disease Groups

Domain/Subdomain	Cancer	Organ Failure	Neurological Disorders	Dementia	Frailty Multimorbidity	Total	P
Intrapersonal	410(80.1%)^a	120(71.4%)	27(57.4%)^b	32(41.0%)^b	17(63.0%)	606(72.8%)	<0.001
Strong and resilient personality	221(43.2%)^a	61(36.3%)	13(27.7%)	15(19.2%)^b	11(40.7%)	321(38.6%)	0.001
Self-decision making	327(63.9%)^a	94(56.0%)	20(42.6%)	7(9.0%)^b	10(37%)^b	458(55.0%)	<0.001
Self-emotional control	311(60.7%)^a	81(48.2%)	19(40.4%)	20(25.6%)^b	10(37%)	441(53.0%)	<0.001
Interpersonal	439(85.7%)^a	126(75.0%)^b	35(74.5%)	53(67.9%)^b	17(63.0%)^b	670(80.5%)	<0.001
Capacity to feel loved	305(59.6%)	98(58.3%)	27(57.4%)	39(50%)	15(55.6%)	484(58.2%)	0.620
Positive relationships	387(75.6%)^a	107(63.7%)	26(55.3%)^b	37(47.4%)^b	16(59.3%)	573(68.9%)	<0.001
Family & Roles: caring family environment	258(50.4%)^a	69(41.1%)	20(42.6%)	26(33.3%)^b	13(48.1%)	386(46.4%)	0.028
Transpersonal	359(70.1%)^a	111(66.1%)	21(44.7%)^b	17(21.8%)^b	16(59.2%)	524(63.0%)	<0.001
Future-focused: confident about the future	273(53.3%)^a	85(50.6%)	14(29.8%)^b	3(3.8%)^b	12(44.4%)	387(46.5%)	<0.001
Present-focused: living the here & now	263(51.4%)^a	77(45.8%)	13(27.7%)^b	14(17.9%)^b	9(33.3%)	376(45.2%)	<0.001
Religiosity and rituals	86(16.8%)	34(20.2%)	6(12.8%)	6(7.7%)	7(25.9%)	139(16.7%)	0.083
Practical	364(71.1%)	131(78%)^a	32(68.1%)	33(42.3%)^b	19(70.4%)	579(69.6%)	<0.001
Organization: organizational capacity	289(56.4%)	105(62.5%)	29(61.7%)	33(42.3%)	15(55.6%)	471(56.6%)	0.052
Capacity to entertain oneself	214(41.8%)^a	79(47.0%)^a	12(25.5%)	3(3.8%)^b	9(33.3%)	317(38.1%)	<0.001

Notes: The significant differences according to the standardized residuals for Pearson’s Chi-square test are marked in bold: ^aGreater than 1.96 (observed frequency is greater than expected); ^bLess than −1.96 (observed frequency is less than expected).