| Literature DB >> 28284185 |
M Duncan1, J Deane2, P D White1, D Ridge3, R Roylance4, A Korszun1, T Chalder5, K S Bhui1, M A Thaha6, L Bourke7.
Abstract
BACKGROUND: Approximately one third of cancer survivors in the United Kingdom face ongoing and debilitating psychological and physical symptoms related to poor quality of life. Very little is known about current post-cancer treatment services.Entities:
Keywords: Cancer; Follow-up; NHS; Post-treatment; Quality of Life; Survey
Mesh:
Year: 2017 PMID: 28284185 PMCID: PMC5346235 DOI: 10.1186/s12885-017-3172-1
Source DB: PubMed Journal: BMC Cancer ISSN: 1471-2407 Impact factor: 4.430
Respondent characteristics
| Country of service | England | 83% [231] |
| Scotland | 9% [26] | |
| Wales | 4% [12] | |
| Northern Ireland | 3% [9] | |
| Profession | Othera | 33% [89] |
| Medical Oncologists | 30% [82] | |
| Clinical Nurse Specialists | 20% [54] | |
| Clinical Oncologists | 7% [20] | |
| Surgeon | 6% [16] | |
| Medical Oncology trainee | 3% [9] | |
| Psychologist | 0% [1] | |
| Cancer specialty◊ | Breast | 49% [129] |
| Colorectal | 23% [61] | |
| Lung | 23% [59] | |
| Other (please specify)b | 23% [59] | |
| Gynaecological | 22% [58] | |
| Urological | 22% [58] | |
| Upper gastro-intestinal | 17% [45] | |
| Head and neck | 13% [33] | |
| Sarcoma | 13% [33] | |
| Hepatobiliary system | 11% [28] | |
| Dermatology | 9% [23] | |
| Lymphoma | 8% [22] | |
| Central Nervous System | 8% [22] | |
| Multiple Myeloma | 8% [20] | |
| Leukaemia | 5% [14] | |
| Institution◊ | Cancer centre | 52% [115] |
| Teaching hospital | 29% [64] | |
| District hospital | 24% [53] | |
| General hospital | 19% [43] | |
| Other (please specify)c | 4% [8] | |
| Community facility | 1% [2] | |
| Primary care | 1% [2] | |
| Years practising in cancer care | 26+ years | 19% [49] |
| 16–20 years | 23% [59] | |
| 11–15 years | 24% [64] | |
| 21–25 years | 13% [35] | |
| 6–10 years | 13% [33] | |
| 0–5 years | 8% [22] |
aOther answers included: radiographer (49%), nurse (12%), research nurses (9%), radiotherapists (6%), centre managers (5%), lay person (3%), survivorship leads (3%), advanced nurse practitioners (2%), dosimetrists (1%), occupational therapists (1%), physiotherapists (1%), radiologists (1%), and research coordinator (1%)
bOther answers included: melanoma, primary cancer, all tumour sites, testicular, paediatric, and geriatric
cOther answers included: private hospitals, information and support services
◊Multiple options available to respond and will add up to over 100%
Elements of post-cancer treatment addressed in aftercare
| Aspects of living beyond cancer addressed | |||
|---|---|---|---|
| % of HCP responding Frequently/Always | % of HCP responding Occasionally | % of HCP responding Rarely/Never | |
| Fatigue | 84% [115] | 10% [13] | 7% [9] |
| Fear of recurrence | 83% [113] | 13% [18] | 4% [6] |
| Anxiety | 82% [112] | 15% [21] | 3% [4] |
| Depression/low mood | 78% [107] | 19% [26] | 3% [4] |
| Menopausal symptoms if applicable | 76% [102] | 12% [16] | 12% [16] |
| Financial problems | 72% [99] | 24% [33] | 4% [5] |
| Body image problems | 72% [98] | 21% [29] | 7% [10] |
| Long-term medical complications of treatment | 72% [98] | 20% [27] | 8% [11] |
| Changes in physical capacity | 68% [93] | 24% [33] | 7% [10] |
| Osteoporosis | 66% [89] | 20% [27] | 15% [20] |
| Other emotional reactions (e.g. guilt, shame, anger) | 65% [87] | 28% [37] | 7% [10] |
| Fear of death | 63% [86] | 28% [38] | 9% [12] |
| Weight changes | 56% [77] | 34% [46] | 10% [14] |
| Social problems | 55% [75] | 34% [47] | 11% [15] |
| Low self esteem | 53% [72] | 31% [42] | 16% [21] |
| Sexual difficulties | 48% [66] | 34% [47] | 18% [24] |
| Changes in cognitive capacity | 45% [62] | 34% [47] | 21% [28] |
| Vocational/occupational problems | 37% [51] | 42% [57] | 21% [29] |
| Spiritual needs | 36% [48] | 35% [47] | 30% [40] |
Note: figures in square parentheses are absolute numbers of responders
HCP’s views of needs of those living with and beyond cancer
| Very important or important | Moderately important | Unimportant or of little importance | |
|---|---|---|---|
| Fear of recurrence | 95% [174] | 4% [7] | 1% [2] |
| Fatigue | 94% [172] | 5% [9] | 1% [2] |
| Anxiety | 89% [163] | 10% [18] | 1% [2] |
| Changes in physical capacity | 89% [163] | 10% [19] | 1% [1] |
| Depression/low mood | 88% [161] | 11% [20] | 1% [2] |
| Long-term medical complications of treatment | 85% [156] | 11% [20] | 4% [7] |
| Body image problems | 83% [152] | 15% [27] | 2% [4] |
| Fear of death | 81% [149] | 16% [30] | 2% [4] |
| Financial problems | 81% [148] | 16% [30] | 3% [5] |
| Menopausal symptoms if applicable | 79% [145] | 17% [31] | 4% [7] |
| Sexual difficulties | 79% [144] | 18% [32] | 4% [7] |
| Changes in cognitive capacity | 77% [143] | 21% [38] | 3% [5] |
| Other emotional reactions (eg. guilt, shame, anger) | 75% [138] | 19% [35] | 6% [10] |
| Social problems | 73% [134] | 21% [39] | 6% [10] |
| Weight changes | 73% [133] | 25% [45] | 3% [5] |
| Vocational/occupational problems | 72% [131] | 20% [37] | 8% [15] |
| Osteoporosis | 67% [122] | 28% [51] | 6% [10] |
| Low self esteem | 66% [118] | 28% [52] | 6% [10] |
| Spiritual needs | 58% [106] | 28% [51] | 14% [26] |
Note: figures in square parentheses are absolute numbers of responders
HCPs reports of Interventions offered in aftercare
| Frequently/Always | Occasionally | Rarely/Never | Don’t know | |
|---|---|---|---|---|
| Interventions offered | ||||
| Dietary advice or support | 72% [105] | 19% [28] | 5% [7] | 4% [6] |
| Medical assessment | 69% [100] | 21% [30] | 10% [14] | 1% [2] |
| Exercise therapy or advice | 65% [95] | 18% [26] | 11% [16] | 6% [9] |
| One off assessment at the end of treatment | 62% [91] | 12% [18] | 17% [24] | 9% [13] |
| Counselling | 61% [89] | 30% [44] | 6% [9] | 3% [4] |
| Peer Support | 57% [83] | 25% [36] | 8% [12] | 10% [15] |
| Family counselling/therapy | 23% [34] | 37% [54] | 28% [41] | 12% [17] |
| Mindfulness training | 21% [30] | 20% [29] | 31% [45] | 29% [42] |
| Vocational rehabilitation/return to work programme | 20% [29] | 19% | 32% [47] | 30% [43] |
| Cognitive behavioural therapy | 16% [24] | 40% [59] | 25% [36] | 19% [27] |
| Acceptance and commitment therapy | 9% [10] | 10% [14] | 34% [49] | 50% [73] |
Delivery of the interventions delivered in after care
|
| ||
| Individual support facilitated by health care professionals | 76% [100] | |
| Group support facilitated by healthcare professional | 74% [97] | |
| Group peer support | 65% [85] | |
| Individual peer support | 17% [22] | |
| None of the above (please specify)a | 5% [7] | |
|
| 1 | 28% [36] |
| 2 | 18% [23] | |
| 3 | 17% [22] | |
| 4 | 10% [13] | |
| 5 | 13% [17] | |
| More than 5 (please specify number)b | 15% [20] | |
|
| Less than 30mins | 21% [27] |
| 30 min – 1 h | 53% [69] | |
| 1 – 2 h | 18% [24] | |
| 2 h + | 9% [11] | |
|
| Once | 6% [8] |
| Weekly | 22% [28] | |
| Fortnightly | 6% [7] | |
| Monthly | 10% [13] | |
| Intermittently | 33% [42] | |
| Not applicable | 12% [15] | |
| Less often (please specify) | 11% [14] | |
|
| Face-to-face | 95% [121] |
| Telephone | 37% [47] | |
| Other (please specify) | 8% [10] | |
| Web based | 2% [2] | |
| Skype/Facetime | 0.0% [0] | |
Note: figures in square parentheses are absolute numbers of responders
aOther answers included: in response to need, none known, signposting to 3rd sector services
bOther answers ranged from 0 to 99, median = 7.5
◊multiple options were available for response and will add to above 100%
Demographics of free text respondents
|
| England | 81% [110] |
| Scotland | 9% [12] | |
| Northern Ireland | 4% [5] | |
| Wales | 2% [3] | |
|
| Medical Oncologists | 35% [48] |
| Othera | 29% [40] | |
| Clinical Nurse Specialists | 18% [24] | |
| Clinical Oncologists | 9% [12] | |
| Surgeon | 6% [8] | |
| Medical Oncology trainee | 3% [4] | |
| Psychologist | 0% [0] | |
|
| Breast | 48% [65] |
| Other (please specify)b | 25% [34] | |
| Urological | 24% [32] | |
| Lung | 22% [30] | |
| Gynaecological | 21% [29] | |
| Colorectal | 21% [28] | |
| Upper Gastro-intestinal | 15% [20] | |
| Sarcoma | 12% [16] | |
| Hepatobiliary Nervous System | 10% [13] | |
| Head and Neck | 9% [12] | |
| Dermatology | 7% [10] | |
| Lymphoma | 7% [9] | |
| Multiple Myeloma | 6% [8] | |
| Central Nervous System | 5% [7] | |
| Leukaemia | 3% [4] | |
|
| Cancer Centre | 52% [70] |
| District Hospital | 24% [33] | |
| Teaching Hospital | 24% [33] | |
| General Hospital | 21% [29] | |
| Other (please specify)c | 4% [5] | |
| Primary Care | 2% [2] | |
| Community Facility | 2% [2] | |
|
| 26+ years | 19% [26] |
| 11–15 years | 26% [35] | |
| 16–20 years | 27% [36] | |
| 6–10 years | 14% [19] | |
| 21–25 years | 12% [16] | |
| 0–5 years | 3% [4] |
aOther answers included: radiographer, research nurse, radiotherapists, survivorship lead (project manager), occupational therapist
bOther answers included: across all cancers, adolescents and young adults, all radiotherapy, testicular
cOther answers included: private hospitals, information and support services
◊Multiple options available to respond and will add up to over 100%