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Table 3 Consolidated issue list with generic survivorship issues

From: Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire

Body Image
• feeling unattractive b, c
• feeling oldb
• feeling satisfied with your physical appearanceb, c
• feeling you could not trust your bodyb, c
Cognitive functioning
• difficulties with concentrationa,b, c
• forgetfulnessb, c
• memory problemsa,b, c
• problems with multi-taskingb, c
• difficulty gathering your thoughts (together)b, c
• ability to think (to process information) has slowed downb, c
Health behaviors
• being alert for symptoms that may signal a return of my cancerb, c
• going quickly to my GP due to having (had) cancerc
• drinking less alcohol due to having (had) cancerb, c
• listening to my body due to having (had) cancerb, c
• eating healthily due to having (had) cancerb, c
• avoiding the sun or protecting my skin due to having (had) cancerb, c
• exercising (more) due to having (had) cancerb, c
• avoiding stress in my life due to having (had) cancerb, c
• cutting down smoking due to having (had) cancer (not applicable option)b, c
• taking better care of yourself due to having (had) cancerb, c
Meaning of cancer
• other issues not related to cancer bother me more than having had cancerb, c
• cancer is a learning experienceb, c
• having (had) cancer has made me accept my own mortalityb, c
• overall quality of lifea, b, c
• being (more) emotional due to having (had) cancerb, c
• seeking a deeper meaning in having (had) cancerb
Negative outlook
• concerned with long term effects of cancer treatmentb, c
• feeling that my life has been suspended because of having (had) cancerb, c
• difficulties adapting my life to the physical consequences of having had cancerb, c
• still feeling like a cancer patientb, c
• experiencing uncertainty about the futureb, c
Positive outlook
• appreciating life (more) due to having (had) cancerb, c
• being psychologically strong(er) due to having (had) cancerb, c
• my personality has changed for the better due to having (had) cancer b, c
• having (had) cancer has given me a purpose in lifeb
• because of having (had) cancer I have reconsidered my priorities in lifeb, c
• standing up for myself (more) due to having (had) cancerb, c
• having (had) cancer has given me a reason to make changes in my lifeb, c
• willing to help others (more) due to having (had) cancerb, c
• due to having (had) cancer, being (more) understanding of what other people feelb, c
Mental health
Depression/behavioral-emotional control Health distress
• feeling depresseda, b, c
• feeling angry or frustratedb, c
• feeling stressedb, c
• mood swingsb, c
• needing psychological supportb, c
• feeling irritablea, b, c
• feeling upset about having (had) cancerb, c
• fear of recurrence or spread cancerb, c
• worried about healthb, c
• fear of dyingb, c
• fear of new cancerb, c
• fear family members will develop cancerb, c
Anxiety
• being worrieda, b, c
• feeling anxious b, c
Physical symptoms
• altered hair structureb, c
• weight gainb, c
• feeling ill or unwellb
• acid refluxb
• overall healtha, b, c
Fatigue Sleep problems
• feeling constantly tiredb, c
• needing more sleep to functionc
• feeling exhaustedb, c
• feeling tireda, b, c
• needing time to recover from normal activitiesc
• feeling weaka, b, c
• needing to take napsb
• sudden attacks of tirednessb, c
• problems falling asleepb, c
• waking up frequently at nightb, c
• trouble sleepinga,b, c
• waking up too earlyb
Physical functioning/ mobility Leg problems
• difficulty carrying something in both hands while climbing stairsb
• difficulty taking a long walka,b, c
• difficulty running fastb, c
• difficulty carrying something weighing 5 kgb, c
• difficulty hiking for 3 kmb, c
• difficulty walking up a flight of stairsb, c
• difficulty doing strenuous activities like carrying a heavy shopping bag or a suitcasea, b
• difficulty standing for a long timeb, c
• restless legsc
• swollen feet or legsb, c
Pain Skin Problems
• headachesb, c
• joint painc
• muscle painb, c
• dry and or scaly skinb, c
• thin skinb, c
Raynaud Neuropathy
• hands and/or feet sensitive to hot and coldc
• cold or pale fingers or toesb, c
• tingling in hands and/or feetb, c
Muscle problems Temperature
• muscle crampsb, c
• muscle weaknessS
• night sweatsb, c
• hot flushesb, c
• feeling coldb, c
Role functioning
• limited in recreational activitiesa,b, c
Work
• difficulties returning to work since having (had) cancerb, c
• having (had) cancer decreased work performanceb, c
• career interrupted due to cancerb, c
Feelings of belonging
Positive impact Negative impact
• family relationships are close(r) due to having (had) cancerb, c
• having (had) cancer has a positive impact on the relationship with my partnerb, c
• feeling close(r) to friends since having (had) cancerb, c
• friends and family are (more) important since having (had) cancerb, c
• feeling that others do not understand the impact of having (had) cancerb, c
• not wanting to burden family membersb, c
• worried about the impact of my cancer on my childrenb, c
Sexual problems  
• feeling guilty for not fulfilling sexual needs of partnerb
Sex-specific sexual problems Sexual frequency
• vaginal drynessb, c
• problems getting or maintaining erectionb, c
• low interest in sexb, c
• sexually active with or without intercourseb, c
• avoiding sexb
Sexual pleasure  
• difficulty becoming sexually arousedb
• feeling uneasy with sexb
• problems enjoying sexb
• problems having an orgasmb
• problems with sexual intimacyb, c
 
Sub-analyses: issues relevant to younger cancer survivors
• upset with appearance of scarb, c
• feeling angry towards bodyb, c
• feeling embarrassed about bodyb, c
• concerned about the ability to have childrenb, c
• having problems with people treating me differently because I have (had) cancerb, c
• difficulties talking about cancer b, c
• my personality has changed for the worse due to having (had) cancerb, c
• having (had) cancer has made me lose my future life plans or goalsb
• financial problems caused by problems with getting a loan, mortgage, or insuranceb, c
  1. Issues in this list were endorsed by 30% of the survivors in at least 6 of the included cancer sites
  2. aissues which are also included in the QLQ-C30
  3. bissues identified in the literature
  4. cissues identified in the survivor interviews