Table 3.
Consolidated issue list with generic survivorship issues
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 |
Issues in this list were endorsed by 30% of the survivors in at least 6 of the included cancer sites
aissues which are also included in the QLQ-C30
bissues identified in the literature
cissues identified in the survivor interviews