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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