Table 2

Thematic framework of the experience of living with and beyond cancer derived from free-text responses to the PROMs survey questionnaire

ThemeCategory (n)Subcategory (n)
Experience of cancer diagnosis and treatmentPositive 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 cancerLack 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 cancerIssues 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.