This work has also been published in Guo et al.92
Workstream 4 (testing the casemix classification) was planned to meet objective 5: to test this person-centred palliative care casemix classification in terms of its ability to predict resource use in the last year of life, and to better understand transitions between services in order to improve care.
Aim
Our aim was to test the palliative care casemix classification developed in workstream 3 in terms of its ability to predict resource use for patients receiving episodes of specialist palliative care, and to explore the experience of transitions between care settings for those receiving specialist palliative care.
Methods
Design
We designed a multicentre prospective cohort study, following patients during episodes of specialist palliative care, with a qualitative nested component (interviews with a subsample of participants to better understand the experience of transitions between care settings).
Definitions
We defined both an episode of care and the setting of care as in Workstream 3: development of the casemix classification, Definitions.
Population and settings
Patients were recruited from 12 organisations providing specialist palliative care services in England, comprising three hospital advisory services, eight inpatient hospice services and five community-based services (some organisations provided more than one setting of care). Sites were selected for diversity in terms of participant age, ethnic background, service size, proportion of cancer/non-cancer patients and urban–rural balance
Inclusion/exclusion criteria
The inclusion criteria comprised adult patients aged ≥ 18 years who were able to consent and receiving specialist palliative care at any of the participating sites. The exclusion criteria were patients aged < 18 years and those unable to consent.
Data collection and primary outcome
Data were collected from patient participants and clinicians between December 2016 and May 2018. Collected data included demographic and clinical variables, episode start and end dates, casemix variables as required for the casemix classification developed in workstream 3, and data on patient-level and other costs of providing specialist palliative care. All participants received the usual specialist palliative care at that site, including a multidisciplinary team with specialist training delivering holistic care focused on physical and psychological symptom management, social/family support, planning ahead around priorities and preferences, and care into the dying phase including post-death care of the family, where relevant. Details of the measures used are presented in Appendix 1.
Palliative Phase of Illness was assessed daily for people receiving inpatient (hospital or inpatient unit) care and at every contact for those receiving community-based care. Each change in Phase of Illness (or end of episode) triggered the collection of the AKPS, IPOS or PCPSS and Barthel Index score. All staff involved in patient care recorded the time spent delivering care to patient participants at a patient level using the staff activity matrix.
We also collected data from participating sites on the costs of delivering their services, plus patient-level resource use data, as in workstream 3.
A subsample of participants who had experienced at least two transitions between care settings were invited for interview. A purposive sampling approach was used to include participants from a range of age groups, sex, diagnoses, types of transitions in either direction and geographical areas.
Data handling
Quantitative data were collected prospectively at each site, recorded on an electronic database, cleaned and checked. Checked data were transferred to statistical software (Stata SE V.12) for analysis. Qualitative data were recorded, transcribed verbatim and handled using NVivo version 12.
Analysis
For the quantitative data, the casemix classes developed in Workstream 3 were applied to predict costs for episodes of care and this was contrasted with the actual costs captured for each episode of care. For the qualitative data we adopted a similar approach to Pinnock et al.’s qualitative study,93 undertaking a thematic94 and narrative analysis of interviews, exploring how perspectives on transitions evolve over time, with detailed attention to patient and family perspectives on their experience of care in each setting and during transitions, including their experience of interventions that potentially influenced changes in settings of care.
Ethics
The trial registration number is ISRCTN90752212. Written or oral witnessed consent was taken and documented for each participant, and continuing consent was confirmed at follow-up. Ethics approval was received from Bromley REC on 5 September 2016 (REC Reference: 16/LO/1021, IRAS Project ID: 204926).
Quantitative results
Subject characteristics
A total of 309 patients were recruited, providing data on 751 episodes of specialist palliative care. Of these participants, 309 contributed one episode of care, 177 (57%) contributed a second episode of care and 119 (39%) contributed a third episode of care. Only 63 (20%) participants contributed four or more episodes of care. Demographic and clinical characteristics for the 309 participants are reported in Table 5. Just over three-quarters (76%) of participants had cancer, but we were able to recruit one-fifth with a range of different non-cancer conditions.
| Characteristic | n (%) |
|---|---|
| Socio-demographic details a | |
| Age | |
| Mean (SD) | 66.9 (13.15) |
| Median (range) | 68 (18–96) |
| < 65 years | 117 (37.9) |
| ≥ 65 years | 183 (59.2) |
| Missing or prefer not to say | 9 (2.9) |
| Sex | |
| Male | 134 (43.4) |
| Female | 170 (55.0) |
| Missing or prefer not to say | 5 (1.6) |
| Ethnicity | |
| White | 265 (85.8) |
| Black African or Black Caribbean | 9 (2.9) |
| Asian | 8 (2.6) |
| Mixed ethnic background | 9 (2.9) |
| Other | 11 (3.6) |
| Missing or prefer not to say | 7 (2.2) |
| Marital status | |
| Married or partner | 165 (53.4) |
| Separated or divorced | 43 (13.9) |
| Widowed | 46 (14.9) |
| Single | 46 (14.9) |
| Missing or prefer not to say | 9 (2.9) |
| Living alone | |
| Yes | 107 (34.6) |
| No | 191 (61.8) |
| Missing or prefer not to say | 11 (3.6) |
| Interpreter neededb | |
| Yes | 2 (0.6) |
| No | 302 (97.8) |
| Missing | 5 (1.6) |
| Primary diagnosis b | |
| Cancer | 237 (76.7) |
| Lip, oral cavity and pharynx | 1 (0.3) |
| Digestive organs | 55 (17.8) |
| Liver and biliary | 8 (2.6) |
| Pancreas | 10 (3.2) |
| Respiratory and intrathoracic | 46 (14.9) |
| Bone, skin and mesothelial | 11 (3.6) |
| Breast | 28 (9.1) |
| Female genital organs | 16 (5.1) |
| Male genital organs including prostate | 25 (8.1) |
| Urinary tract | 11 (3.6) |
| Brain, eye and other central nervous system | 4 (1.3) |
| Unknown primary | 7 (2.3) |
| Lymphoid and haematopoietic | 15 (4.8) |
| Independent multiple sites | 0 (0.0) |
| Non-cancer | 59 (19.1) |
| HIV/AIDS | 1 (0.3) |
| Motor neurone disease/ALS | 11 (3.6) |
| Dementia including Alzheimer’s | 0 (0.0) |
| Neurological (excluding MND) | 8 (2.6) |
| Diabetes mellitus | 0 (0.0) |
| Heart failure | 5 (1.6) |
| Stroke, infarction or haemorrhagic | 0 (0.0) |
| Other heart or circulatory | 0 (0.0) |
| Chronic respiratory including COPD | 28 (9.1) |
| Liver failure or chronic liver disease | 1 (0.3) |
| Renal failure | 1 (0.3) |
| All other or multiple non-cancer conditions | 4 (1.3) |
| Missing | 13 (4.2) |
Episode characteristics
Details of the episodes of care are reported in Table 6. Seventy-seven episodes of care (10% of all episodes) occurred at sites not participating in the study; although we had endeavoured to include all specialist palliative care sites in each geographical area, inevitably some episodes of care (especially in hospital) were outside of our C-CHANGE sites. Tables 7 and 8 report the duration of episodes of care, by setting and by episode number, respectively. As expected, the median duration of episode was shortest for hospital advisory episodes (10 days) and longest for community episodes (26 days). Note that the absence of the dying Phase of Illness strongly affects these data; those first seen in the dying phase had the shortest length of stay yet are effectively excluded from these data because of the requirement for consent.
| Episode of care | Setting, n | Total, n | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Community | Hospice inpatient | Hospital inpatient (advisory) | Non-C-CHANGE site: communitya | Non-C-CHANGE site: hospice inpatienta | Non-C-CHANGE site: hospital inpatient (advisory)a | Other | Unknown | ||
| 1st | 136 | 64 | 107 | 2 | 309 | ||||
| 2nd | 88 | 33 | 13 | 13 | 1 | 25 | 2 | 2 | 177 |
| 3rd | 40 | 43 | 19 | 2 | 1 | 12 | 1 | 1 | 119 |
| 4th | 21 | 24 | 4 | 2 | 10 | 2 | 63 | ||
| 5th | 13 | 12 | 4 | 5 | 34 | ||||
| 6th | 10 | 8 | 2 | 2 | 22 | ||||
| 7th | 5 | 4 | 2 | 11 | |||||
| 8th | 2 | 4 | 2 | 8 | |||||
| 9th | 3 | 2 | 5 | ||||||
| 10th | 1 | 1 | |||||||
| 11th | 1 | 1 | |||||||
| 12th | 1 | 1 | |||||||
| Total | 319 | 195 | 152 | 19 | 2 | 56 | 5 | 5 | 751 |
| Duration of episode of care (days)a | ||||
|---|---|---|---|---|
| Community | Hospice inpatient | Hospital inpatient (advisory) | All settings | |
| Mean (SD) | 52.67 (67.17) | 25.31 (29.07) | 18.38 (29.18) | 36.48 (53.84) |
| Median (range) | 26 (1–365) | 15.5 (1–168) | 10 (1–250) | 17 (1–365) |
| Missing, n | 24 | 3 | 4 | 35b |
| Duration of episode of care (days)a | ||||
|---|---|---|---|---|
| Episode 1 (n = 307) | Episode 2 (n = 134) | Episode 3 (n = 102) | All (n = 543) | |
| Mean (SD) | 41.18 (56.73) | 34.86 (55.74) | 28.24 (39.76) | 36.48 (53.84) |
| Median (range) | 20 (1–304) | 15 (1–365) | 16 (1–250) | 17 (1–365) |
| Missing, n | 23 | 3 | 9 | 35 |
Casemix variables
Details of the casemix variables are reported in Table 9. Apart from the dying Phase of Illness, the casemix variables extended across the full range of categories or scores.
| Episode characteristics | Episodes, n (%)a |
|---|---|
| Setting of care | |
| Hospital advisory | 139 (25.6) |
| Inpatient hospice | 140 (25.8) |
| Community | 264 (48.6) |
| Total | 543 (100.0) |
| Palliative Phase of Illness at episode start | |
| Stable | 193 (35.6) |
| Unstable | 195 (35.9) |
| Deteriorating | 148 (27.2) |
| Dying | 0 (0.0) |
| Missing | 7 (1.3) |
| AKPS score at episode start | |
| Mean (SD) [range] | 53.5 (14.4) [20–90] |
| 0–50 | 260 (47.9) |
| 60–100 | 271 (49.8) |
| Missing | 12 (2.3) |
| Modified Barthel Index score at episode start | |
| Mean (SD) [range] | 15.00 (5.2) [1–20] |
| Missing | 16 (2.9) |
| PCPSS at episode start | |
| Pain | |
| Mean score (SD) [range] | 1.52 (1.06) [0–3] |
| Absent | 118 (21.8) |
| Mild | 140 (25.7) |
| Moderate | 162 (29.8) |
| Severe | 118 (21.8) |
| Missing | 5 (0.9) |
| Other physical symptoms | |
| Mean score (SD) [range] | 1.03 (0.63) [0–3] |
| Absent | 83 (15.2) |
| Mild | 358 (66.0) |
| Moderate | 80 (14.7) |
| Severe | 12 (2.2) |
| Missing | 10 (1.9) |
| Psychological symptoms | |
| Mean score (SD) [range] | 1.62 (0.88) [0–3] |
| Absent | 49 (9.0) |
| Mild | 186 (34.3) |
| Moderate | 186 (34.3) |
| Severe | 91 (16.7) |
| Missing | 31 (5.7) |
| Family concerns | |
| Mean score (SD) [range] | 2.03 (0.99) [0–3] |
| Absent | 53 (9.8) |
| Mild | 70 (12.9) |
| Moderate | 169 (31.1) |
| Severe | 192 (35.3) |
| Missing | 59 (10.9) |
Actual and predicted costs per day
Table 10 presents the actual costs per day, whereas Table 11 compares the predicted class costs with the actual costs per day. The actual cost of inpatient hospice care are consistently higher than the predicted class cost, perhaps because of the 2-year interval between the collection of costs for workstreams 3 and 4 (no uplift was applied) or possibly because of improvements in the application of our costing methodology (the same costing methodology was used in both workstreams, but the teams were more familiar with how to apply it).
| Setting of care | n | % |
|---|---|---|
| Hospital advisory | 139 | 25.6 |
| Inpatient hospice | 140 | 25.8 |
| Community | 264 | 48.6 |
| Total | 543 | 100.0 |
| Mean (SD) | Median | |
| Hospital advisory | ||
| Cost per day (£)a | 50.83 (10.88) | 51.45 (38.17–57.84) |
| Length of episode (days) | 18.38 (29.18) | 10 (5.5–15) |
| Inpatient hospice | ||
| Cost per day (£)a | 602.02 (257.73) | 699.61 (536.90–772.66) |
| Length of episode (days) | 25.31 (29.07) | 15.5 (7.75–24.25) |
| Community | ||
| Cost per day (£)a | 34.56 (8.22) | 32.83 (25.75–40.79) |
| Length of episode (days) | 52.67 (67.17) | 26 (23–207) |
| Class | Living situation | Pain | Functional status | Palliative phase of illness | Family distress | Physical symptoms other than pain | Psychological symptoms | Sex | Predicted class cost (£) | Actual cost (£), median |
|---|---|---|---|---|---|---|---|---|---|---|
| Classes for hospital advisory episodes of care | ||||||||||
| A | Lives alone | – | – | – | – | – | – | – | 85 | 86.44 (75.99–88.94) |
| B | Does not live alone | Absent or mild | – | Unstable or dying | – | – | – | – | 75 | 76.87 (70.99–86.33) |
| C | Does not live alone | Absent or mild | AKPS ≥ 40% | Stable or deteriorating | – | – | – | – | 60 | 62.12 (53.79–73.61) |
| D | Does not live alone | Absent or mild | AKPS ≤ 30% | Stable or deteriorating | – | – | – | – | 74 | 78.22 (70.72–84.51) |
| E | Does not live alone | Moderate or severe | – | – | – | – | – | Female | 95 | 96.55 (89.68–98.44) |
| F | Does not live alone | Moderate or severe | – | Stable, deteriorating or dying | – | – | – | Male | 76 | 74.47 (69.01–80.37) |
| G | Does not live alone | Moderate or severe | – | Unstable | – | – | – | Male | 80 | 81.55 (69.87–89.99) |
| Classes for inpatient hospice episodes of care | ||||||||||
| A | – | Absent, mild or moderate | – | – | Absent or mild | – | – | – | 496 | 597.18 (531.80–642.03) |
| B | – | Absent, mild or moderate | – | – | Moderate or severe | – | Absent or mild | – | 648 | – |
| C | – | Absent, mild or moderate | – | – | Moderate or severe | – | Moderate or severe | – | 965 | 1003.67 (931.49–1088.67) |
| D | – | Severe | – | Unstable or deteriorating | – | – | – | – | 657 | 757.07 (710.46–823.62) |
| E | – | Severe | – | Stable or dying | – | Absent, mild or moderate | – | – | 214 | 351.34 (279.67–386.68) |
| F | – | Severe | – | Stable or dying | – | Severe | – | – | 624 | – |
| Classes for community episodes of care | ||||||||||
| A | – | – | – | Stable | Absent or mild | – | – | – | 20 | 24.80 (21.76–30.56) |
| B | – | – | – | Stable | Moderate or severe | – | – | – | 24 | 25.82 (24.88–28.96) |
| C | – | – | AKPS ≤ 20% | Unstable, deteriorating or dying | – | – | – | – | 56 | – |
| D | – | – | AKPS ≥ 30% | Unstable, deteriorating or dying | – | Absent or mild | – | – | 27 | 29.57 (27.92–31.33) |
| E | – | – | AKPS ≥ 30% | Unstable, deteriorating or dying | Absent or mild | Moderate or severe | – | – | 27 | 26.90 (25.66–28.92) |
| F | – | – | AKPS ≥ 30% | Unstable, deteriorating or dying | Moderate or severe | Moderate or severe | – | – | 40 | 40.17 (38.67–41.67) |
Qualitative results
A total of 20 interviews with 26 participants were conducted. Participants’ ages ranged from 36 to 91 years (mean 68 years). Of these 20 interviews, 14 were conducted with patients and family caregivers separately and six jointly.
Four main themes and various subthemes were identified from the data analysis.
Theme 1: uncertainty about the new care setting
Lack of information about the new setting of care and patients’ uncertainty regarding their discharge plan predominated in interviews.
Many participants commented on the ‘bad’ timing of a transition in care setting (e.g. emergency admissions during out of hours) and uncertainty around access to care.
Participants highlighted the fact that clear and effective communication is as important as the quality of care delivered; receiving the right information in the right place at the right time helped them to gain a better understanding of their health status and care plan, which reduced their anxiety and worries.
Theme 2: biographical disruption
Sense of identity was considered important but participants felt that transitions often compromised one’s sense of self, which linked to an inevitable loss of control and independence.
Theme 3: importance of continuity of care
Both family and patients praised clinicians who provided continuity and got to know them as individuals. They appreciated not having to retell their stories and recognised the difference in care when staff knew them and their stories.
Participants highlighted the importance of the correct and timely transfer of patient information, medical notes and medication prescriptions; when things were disjointed, patients and their families felt unsafe and that lack of continuity could lead to medical mistakes.
Theme 4: need for emotional and practical support
Family members often act as advocates in the healthcare setting and the majority of participants specified a great need for support from family and friends not only in practical matters, such as arranging transport or coordinating care, but also in the emotional aspect of transitions in care.