Table 1

Patient-reported outcome measures

NameOptionsText used in surveyAliasWords
Quality of life
Health statusNone– extreme

How are you today? (past 24 hours)howRu24 (2.6)Health status (howRu) is sometimes referred to as health-related quality of life. This was the first in the family.17
 Pain/discomfortPain or discomfortPain
 DistressFeeling low or worriedDistress
 DisabilityLimited in what you can doDisability
 DependenceRequire help from othersDependence
Personalwell-beingStrongly agree–disagreeHow are you feeling in general?PWS29 (3.7)Personal Well-being Score (PWS) is based on the Office of National Statistics ONS4. Unlike ONS4 all items are worded positively, and it has a summary score.23
 Life satisfactionI am satisfied with my lifeSatisfaction
 WorthwhileWhat I do in my life is worthwhileWorthwhile
 HappyI was happy yesterdayHappy
 Not anxiousI was NOT anxious yesterdayNotAnxious
SleepStrongly agree– disagreeThinking about your recent sleep patternSleep29 (0.9)Sleep hygiene is an important determinant of health and well-being.50
 Sleep at same timeI go to sleep at the same timeSleepTime
 Wake at same timeI wake up at the same timeWakeTime
 Wake refreshedI wake up feeling refreshedRefreshed
 Sleep wellI sleep wellSleepWell
FatigueStrongly agree–disagreeThinking about getting tiredFatigue27 (3.9)Fatigue is a common presenting complaint in primary care and can have a large impact on quality of life.51
 Energy levelI usually have enough energyEnergy
 Tire quicklyI do not tire too quicklyTireFast
 Able to concentrateI can usually concentrate wellConcentrate
 StaminaI can keep going if I need toStamina
Individual care
Health confidenceStrongly agree–disagreeHow do you feel about caring for your health?HCS38 (1.9)Health Confidence Score (HCS covers people’s confidence about looking after their own health.24
 KnowledgeI know enough about my healthKnowledge
 Self-managementI can look after my healthSelfManage
 Access to helpI can get the right help if I need itGetHelp
 Shared decisionsI am involved in decisions about meShareDecision
Self-careStrongly agree–disagree

How well do you look after yourself?SelfCare28 (4.2)Self-care, includes self-management of diet, physical activity, weight and medication.52
 Diet managementI manage my diet wellDiet
 Exercise managementI manage my physical activity wellExercise
 Weight managementI manage my weight wellWeight
 Meds managementI manage my medication wellMedsMan
Shared decisionsStrongly agree–disagree

Thinking about your planSDM28 (3.8)Shared decisions (SDM) covers patients’ involvement in clinical decisions, including their understanding of the choices and the risks and benefits of each.53
 Know benefitsI know the possible benefitsBenefits
 Know downsideI know the possible downsideDownside
 Know choicesI know that I have choicesChoices
 Fully involvedI feel fully involvedInvolved
Behaviour changeStrongly agree–disagree

Thinking about this behaviourBehaviour29 (1.0)Behaviour change covers capability, opportunity and motivation (conscious and unconscious) to change behaviour based on Michie’s COM-B model.54
 CapabilityI am able to do it (skills and tools)Capability
 OpportunityNothing prevents me from doing itOpportunity
 Conscious motiveI choose to do itMotivation
 Automatic motiveI do it without thinkingAutoMotive
AdherenceStrongly agree–disagree

Do you follow treatment instructions?Adherence32 (3.1)Adherence includes remembering to take medications, have treatment and to follow instructions, given side effects or recovery, and satisfaction.55
 RememberI remember to do itRemember
 Go on if I feel badI do not stop if I feel badTakeIfBad
 Go on if I feel betterI do not stop if I feel betterTakeIfGood
 Treatment satisfactionI am happy with my treatmentTreatSatis
Acceptance of lossStrongly agree–disagree

Have you learnt to live with what’s happened?Loss32 (0.5)Acceptance of loss covers how people cope with loss, learn to live with events, including recognition of capabilities and change, how to do things differently and to move on with life, along the lines of the grief cycle.56
 New capabilityI know what I can and cannot doCanDo
 Recognise lossI see how my life has changedRecognition
 Change activityI do things differently nowActivity
 Move onI have moved onMoveOn
Social determinantsStrongly agree–disagree

Thinking about how you liveSDOH31 (2.4)Social determinants of health impact health and care outcomes but are outside the clinical system. Education, self-esteem, housing and poverty play a major role in determining peoples’ health outcomes.57
 EducationI have had a good educationEducation
 Social statusI am valued for what I doStatus
 HousingI am happy about where I liveHousing
 Enough moneyI have enough money to copePoverty
LonelinessStrongly agree–disagree

Thinking about your friends and familyLoneliness31 (2.4)Loneliness is an important determinant of health and well-being. This measure focuses on peoples’ perception of loneliness and their social relationships in a positive way.58
 People to talk toI have people to talk toCompanion
 People to confide inI have someone I can confide inConfidant
 People to helpI have people who will help mePeopleHelp
 Do things with othersI do things with othersJoinIn
Neighbour relationshipsStrongly agree–disagree

Thinking about your neighboursNeighbours19 (3.2)Neighbour relationships, community cohesion and social capital are impacted by how well people know, trust and help each other.59
 Know each otherWe know each otherKnowNeighs
 Trust each otherWe trust each otherTrustNeighs
 Share informationWe share informationNeighsShareInfo
 Help each otherWe help each otherNeighsAssist
Personal safetyStrongly agree–disagree

Thinking about your personal safetyPersSafety30 (4.8)Personal safety covers physical safety (eg, from injury) and emotionally safety (from verbal abuse or discrimination), which may occur either inside your own home or when you go out.60
 Safe at homeI feel safe at homeSafeHome
 Respected at homeI feel respected at homeHomeRespect
 Safe outsideI feel safe outside homeSafeOut
 Respected outsideI feel respected outside homeRespectOut
Loneliness (ONS)Hardly ever–always

How often do youLonelinessONS17 (0.0)This measure is included as an alternative to loneliness (above), based on guidance from the Office of National Statistics (ONS).61
 No one to talk toHave no one to talk to?NoFriends
 Feel left outFeel left out?Isolated
 Feel aloneFeel alone?Alone
 Feel lonelyFeel lonely?Lonely
  • FKG, Flesch Kincaid Grade.