Thematic framework of the experience of living with and beyond cancer derived from free-text responses to the PROMs survey questionnaire
| Theme | Category (n) | Subcategory (n) |
|---|---|---|
| Experience of cancer diagnosis and treatment | Positive experiences (n=209) | Excellent/good general care (n=63) |
| Timely diagnosis (n=19) | ||
| Coordinated care (n=17) | ||
| Excellent/good healthcare professionals (n=115) | ||
| Negative experiences (n=81) | Diagnostic and treatment delays (n=18) | |
| Poorly coordinated treatment (n=13) | ||
| Lack of support from staff (n=12) | ||
| Appointment cancellations (n=10) | ||
| Poor explanations/patient communication (n=24) | ||
| Poor inpatient care (n=17) | ||
| Experiences of living beyond cancer | Lack of preparation by services (n=36) | Lack of information on treatment side effects (n=29) |
| Lack of information concerning possible psychological impact of cancer and treatments (n=10) | ||
| Lack of information on self-management strategies (n=5) | ||
| Experiences of aftercare services (n=83) | Positive experiences of aftercare services (n=31) | |
| Lack of aftercare/poor admin (n=35) | ||
| Support required from friends/family in the absence of aftercare (n=13) | ||
| Poor patient communication (n=13) | ||
| Lack of GP involvement (n=4) | ||
| Living with comorbidities (n=172) | ||
| On-going Physical problems (n=86) | Bowels (n=28) | |
| Urinary problems (n=19) | ||
| Cognitive problems/memory loss (n=13) | ||
| Pain (n=22) | ||
| Impotence/sex difficulties (n=30) | ||
| Fatigue (n=29) | ||
| Peripheral neuropathy (n=10) | ||
| Other physical problems (n=26) | ||
| On-going social and financial problems (n=62) | Caring responsibilities (n=17) | |
| Financial worries/benefit problems (n=34) | ||
| Impact of cancer on friends/relatives (n=14) | ||
| Lack of social services support(n=14) | ||
| On-going emotional /psychological problems (n=122) | Fear of recurrence (n=50) | |
| Genetic concerns for relatives (n=8) | ||
| Poor body image (n=14) | ||
| Depression/feeling isolated (n=34) | ||
| Anxiety (n=7) | ||
| Other psychological problems (n=15) | ||
| Coping/ self-management strategies (n=139) | Support from friends/families (n=34) | |
| Maintain ‘positive’ approach (n=41) | ||
| Adopting healthier lifestyles (n=8) | ||
| Maintaining or increasing activity (n=29) | ||
| Returning to employment (n=20) | ||
| Acceptance/live life for today (18) | ||
| Use complementary therapies (NPIs) (n=13) | ||
| Other coping strategies (n=44) | ||
| No problems experienced (n=30) | ||
| Issues unrelated to the experience of living beyond cancer | Issues related to the questionnaire structure (n=27) | |
| Miscellaneous (n=24) | ||
| Description of disease and treatment pathway (n=116) |
Note 1: Categories and subcategories are mutually exclusive, but individual participants often provided free-text comments that were divided between more than one category. Thus, numbers do not add up to 1056.
GP, general practitioner; PROM, patient-reported outcome measures.